Kate Conklin - Triathlete on Fire

Collicky baby....collicky mommy

2011-06-23T12:38:00.003-04:00

"I get really upset seeing my friends who are mums crying because they feel like they're not good enough. Clever, confident, kind young women all going, 'I'm ruining my child's life."

There are a lot of scary things that can happen to a woman in the delivery of a baby that they don't tell you about.... Luke came out of me like a tornado.... and his aftermath was horrible!!! 6 months of pure agony, pain, suffering, not being able to sit down, incontinence, and doctors that don't seem to care. Lots of freaky stuff happened as well... apparently breast feeding was a no no for me and I had to stop after 3 months or I would have permanent damage and my body would never heal. I don't know if it is was because I had EM or not, but my wound would not heal and breast feeding didn't help!!! So here I was, in extreme pain, wearing "diapers", not being able to sit down, and to boot... HAD AN EXTREMELY COLLICKY BABY. Luke cried practically 24/7..... I felt like the worst mom in the world. I tried EVERYTHING THEY SAID TO DO FOR COLLICKY BABIES...BUT HE JUST SCREAMED AND SCREAMED. Maybe he picked up on me being in pain.???? but I was screaming on the inside. I felt so alone!!!! WHy couldn't I just have a normal delivery?? Why am I still having problems????? Doctors wouldn't help me... THEY REFERRED ME TO A PSYCHOLOGIST AGAIN.... WHICH I HATE!!! Just like when I first got diagnosed with EM.... IM IN PAIN PEOPLE...WHY DO I NEED A SHRINK???

I needed help with Luke but had no one to help me... had a fear of taking him to a support group because all the other babies would sleep and be fine...but Luke would scream. I was trapped! the weather was horrible, and we both were trapped....AND COLLICKY. I cried all the time as well... felt horrible that I couldn't do everything a mother was supposed to do, horrible that I couldn't help Luke.... couldn't get any sleep... was I a horrible mother????

I read the "happiest baby on the block " book about collicky babies and it helped explain a lot!!! Poor little Luke too smart and too sensitive for his own good and so they cry. Once we got the jumperoo and he could jump for hours and burn off some energy...he was fine! Now he laughs and plays and rolls and giggles.... Turns out he was just like mommy and needs to exercise!!! He is going to be a super athlete!!!!!

Post partum depression.... yes I had it! but whether it was only because I was in extreme pain with no apparent help or hope for the future??? I never had any thoughts of hurting luke or any thoughts about not trying to help him.... but I did want to die. Went through all the stages of grief and misery like before. Just wanted out! and I had no one to talk to ...no one going through anything similar to what I was going through.... ONCE AGAIN... FREAK OF NATURE.

Finally found a PT therapist who does miracles for women with babies...and she explained what happened and why i was in so much pain... Luke tore through all my organs and girly parts and nerves down there and takes FOREVER TO HEAL. IF you think about how many nerve endings are there.... NO WONDER. Anyhoo, finally found a doctor ready to help. She is a UROGYN and does surgeries. So 6 months after LUKE I FINALLY HAD SURGERY TO REPAIR damage and it worked!!! FINALLY I have hope again... got cleared to run, swim, bike... resume normal life!!! IT seemed like forever ago since I could do the things I wanted to do. No longer trapped inside with a screaming infant. Started taking Luke for long walks....then small runs... and he finally stopped being as collicky as wel!!

so if you happen to have a nightmare delivery like mine and a tornado aftermath... don't stop searching until you get help! There are lots of doctors to ignore you, and not treat you, but hopefully there will be 1 that will!!! I know I will get crap for posting this... but felt like people should know that labor is not always a wonderful thing and there are possible life long side effects... I guess the "mind erasing" drug that makes mothers want to have more kids never worked on me. I will never forget this!! But, having my surgery requires me to have a C section if i ever get pregnant again... so who knows?

but if you have a collicky baby... read that book!!! at least it makes you feel like you are not alone and YOU ARE NOT A HORRIBLE MOTHER. You just have an interesting baby that is passionate and trust me...they will turn out to be a super happy baby ....and NEVER BORING. Luke never just stared at his hands... never sat there and stared into space...he was too busy punching, kicking, and trying to do things. Kind of like me!!!!!!!!!!!!!! So time to spit out my pacifier and get back into life!

Welcome to the world my miracle baby

2010-12-06T16:07:00.008-05:00

"A baby will make love stronger, days shorter, nights longer, bankroll smaller, home happier, clothes shabbier, the past forgotten, and the future worth living for. "

When my baby finally came into this world, it was a miracle. When I think about all the obstacles and EM related troubles he had to fight, he really is a miracle. Once again, EM tried to take away something from me and luckily it did not succeed. Once again, I had to go through what seemed like a horrible nightmare! I remember thinking in labor, why oh why can't I have just one thing that is easy? Guess that is not my fate, but my baby makes it all worthwhile in the end. But, I don't wish my labor on anyone...

Erythromelalgia is such a strange and horrible disorder that keeps finding ways of trying to kill me with pain and suffering and no one knows much about it!! I went from being super pregnant lady wth really low blood pressure to severe preeclamptic in 1 week. I went in for my 36 week pregnancy checkup and my blood pressure was 145/93 and I thought that was strange because my normal pregnancy BP is 100-110/50-60 ish range and that is after walking/running 30 blocks to the docs office. They checked my BP again when I left the doctors office just in case it was a fluke but it was still the same. Hummmpfffh. ? So, I went home and looked up preeclampsia and there it was staring me in the face. There is a correlation between preeclampsia and "blood vessel" disorders!!!!!!!!!!!!!!! and when I was reading all the side effects, I realized I had most of them!@ ???? The doctors office didn't seemed concerned earlier, but I instantly was. Something just didn't feel right. I was having this sharp pain under my right ribs which I thought was weird... I had a nightmare that it was the placenta detatching but I didn't mention it to the doctor because everytime I mentioned something I was experiencing he would just say to me thats normal. I also was having swelling in the face, eyelids and hands. I thought all swelling was normal, but I guess face/eyes and hands to my extent, was NOT NORMAL. I had actually made a joke to a friend earlier in the week that even my eyelds were swollen. SO NOT FUNNY NOW. THen during Thanksgiving, as I was cleaning, my hand swelled up like a baseball mitt and wouldn't go down!!! until after a while and cold water. This is the tricky bit.... EM makes you swell up. So how am I supposed to know the difference between normal pregnancy, EM and preeclamptic swelling?????????? not to mention this past week, I was getting horrible migraine type headaches with the aura and the bright lights. I should have known it was different because I haven't had migraines in many years really, and these ones, the aura and bright lights would stick around with the head ache pain, and previously would go away. Sunday morning, I get 6 calls from my doctor frantically asking me to come in to his office for another BP/urine test. I guess he hadn't realized my BP had stayed up during the checkup. SO Dan and I go in and once again, BP is 147/96 ish and I had +1 proteins in urine... all signs of mild preeclampsia. My doctor then orders us to the hospital for monitoring... SIGH... NOT AGAIN!@!!!@@@##$$@!@ I hate going to the hospital to be monitored. BLECH> I am so glad I ate something this time around...but i wish it was more than just a cream cheese bagel, because I wouldn't be eating for 3 days!!! Should have pigged out on everything!!!!!!!!!!!!!

We get to the hospital and I get hooked up to machines again... yay me. They come and do the urine and lab tests and my BP gets taken every few minutes...but the time I am out of the hospital I think they measured my BP 1000 times at least!!! They decide with all my symptoms to keep me overnight for hospitalization. My BP hit 154/110 as the highest, but it didn't stay that high the whole time, it hovered around 140/90's which is mild preeclampsia. The doctors didn't seem too concerned but they just wanted to keep me to be safe. I thought for sure they would send me home the next morning and was annoyed that I was in the hospital AGAIN...

but it turned out to be extremely lucky that I was in the hospital because if I had gone home, something terrible could have happened. The doctors did their rounds and labs, and next thing I know I am getting induced because I went from mild Preeclampsia to SEVERE preeclampsia overnight... This is where I got scared, would this kill me? would this kill my baby? The only way to stop preeclampsia is to deliver the baby but what if it was too late? STUPID EM!!! Why?????? Please baby, be ok. So they started the Pitocin drip and Magnesium (I HATE THIS STUFF) and my doctor said it was go time... but I knew I was in for A LONG LONG LONG LABOR. I'm going to call my doctor OB1... :) put this balloon contraption inside that helps get you dilated faster... once you push it out then it helps speed things along. Several hours later, I FINALLY PUSHED OUT THE BALLOON... along with the mucous plug... ew... but then I started throwing up. I threw up so many times, it was horrible!! They kept telling me it was a good sign and I kept wanting to punch them in the face... how can throwing up be good?? I hit 6 cm dilated and STAYED THERE FOR what seemed like an eternity!!!! apparently magnesium for blood pressure slows labor down and pitocin speeds it up, so you have to find a balance. They broke my water which was kind of funny because I had a high amount of fluid and I was gushing like niagara falls!!!!!!!!!!!!!! Literally, it was all over the place!! :)

Right about now my epidural falls out... ??????????????????? The anethisiologist tech actually said, "how does that even happen?" This is where it got UGLY. I started to feel excruciating pain and they wouldn't give me another@@!! They kept denying it was out and tried other drugs and none of them worked!! The tech kept telling me that the epidural would not take away the "PRESSURE" FEELING...just the pain... and I was getting mad because I WAS IN PAIN!! At one point she actually pushed me with her finger and asked me what that felt like... ???? PAIN YOU IDIOT. I know the difference between pressure and pain...and THIS WAS PAIN!!!!!!!!!!!!! How about I punch you in the face and you tell me if it is just pressure??? I will admit, I had turned into the dreaded "b-tch" and I didn't feel bad about it at the time. Every time a contraction hit, I would scream bloody murder! It literally felt like someone sawing me in half. I was getting really upset at the nurse who kept trying to tell me to push.... how the hell can I push with this pain? I know what you might be thinking.... I must be a wuss.... BUT ON THE CONTRARY... I live through extreme pain. I didn't even feel my ruptured appendix until it was almost too late. ? So when I say it hurts...IT BLOODY HURTS. Turns out there is a reason for my pain...see below. Finally, the anesthisiologist comes back in. He decides to put another one in after I begged him to just kill me. THANK GOD. They are wonderful things... don't judge me. I didn't want an epidural at first, but I had no choice and there was no way he was coming out without one.

Finally, I was 10 cm dilated and it was time to push! 18 hours later!!!!!!!!!!!!!!!!!!! Once the epidural was back in, I was fine and ready to push. The pushing wasn't that bad because all I felt was pressure.... (haha) but after Luke came out. The doc said I was hemmoraging and couldn't stop the bleeding and was frantically stitching me up. He looked like a mad scientist. This is the bit where it all went wrong for me. But, Luke Benjamin, was perfect. It was scary because he wasn't crying at first like they are supposed to. It was because the drugs I was on affected him and made him very sleepy. He finally cried and looked so cute and I got to hold him. I was still out of it because of the drugs... but all that mattered was that he was ok. I will spare you the horrid details, but I ended up with a gazillion stitches and he left a lot of damage to my insides that I am still recovering from. I had to stay an extra night in the monitoring room, but the next night we paid for a private room. IT WAS TOTALLY WORTH IT!! The food was excellent and I didn't have to share the room with anyone else.

Luke Benjamin Hacking was born on November 30, 2010 at 6:38 am. He weighed 6 lbs 2 ozs and was 20 1/2 inches long. He was born 4 weeks early and really skinny!!!!! He ended up with jaundice and had to stay an extra night under the tanning lights. He also lost almost 1 lb partially because of the magnesium, and he was tongue tied.... (another blog post). Poor little man! But we finally got to take him home.

Are we there yet??????

2010-11-22T19:07:00.002-05:00

I hate hearing: "Your little guy looks fully cooked." Is he a Thanksgiving Turkey??????!!!!

Speaking of Thanksgiving.... my belly button has turned from an innie to an outie, and Dan and I think that means the baby is done. :P The button is similar to the pop up turkey timer and when pops out.... HE IS DONE. PLEASE???? It is also funny how the pregnancy sites describe how big your baby is week to week by using food references. ? Starts out small like your baby is a bean, and then a lemon, a grapefruit, and then gets bigger to an eggplant, melon, etc. The worst bit is now when they now say my baby is the size of a small roasted piece of meat. ? HE IS NOT FOOD ????? Very disturbing! Who comes up with this crap??? and why use food we eat? I did find a "man " site that uses manly non food items to describe the baby which seems more preferable to me. Will never look at a Thanksgiving Turkey the same from now on.

All I have to say, is that I am just miserable... MISERABLE. Whoever those pregnant ladies are that say pregnancy is amazing and they love it, ARE EITHER CRAZY, ON DRUGS, or have completely forgotten just how horrible the last month is... I have heartburn that I swear is going to burn through my chest and throat every night. And the worst bit is, you can't really take anything strong enough to help!! TUMS DON'T WORK WORTH A CRAP. I thought that right now I would be able to eat whatever I want, but I can't... it burns, burns, burns... and the burps are insane! Lets just say that I am paying Dan back for all his manly noises he makes... haha! BETTER OUT THAN IN. :) I have been getting migraines as well, back pain, stomach pain, rib pain... swelling up like a huge red tomato, and I can't find a comfy way to sleep!!!! ARG !!! WAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAA!!!
*&^)*&%^%#$@$#@%$*&^)%*&^_(*)*()(*)*&&%^%#%#!!!!!!!!!!!!!

every night I wake up crying/screaming/begging for mercy. Is it December yet? Please baby, GET OUT! I LOVE YOU, BUT TIME TO GET OUT!! I've tried bribing him, soft talking him, forcefully telling him to get out... and i finally have settled on reverse psychology. Figured if he is like me, telling him he can't do something might work? The problem is, all that stop labor drama and drugs... might have actually stopped him!!!!????? the doc says I will probably be late now and need to be induced. He is lucky he didn't get a broken nose for that joke. What if he won't come out now???? what if he missed his window and now will have to be out by c section. CRY CRY CRY!!!!

so no matter what people say... PREGNANCY IN 3RD TRIMESTER is not fun... period. All you do is wait and wait and wait, and groan, and be miserable, waiting for the day baby makes an appearance. I will need some serious brainwashing drugs/hormones to want to have baby number 2... !!!!!!!!!!!!!!!!!!!!

feel like the puppet from the off broadway show Avenue Q: Kate monster!!!!! SINGING "SUCKS TO BE ME.... SUCKA SUCKA SUCKA SUCKA SUCKA SUCKA... SUCKS TO BE ME!!!!!!!!!!!!"

MY UTERUS IS WHERE???????????????????

2010-11-07T17:25:00.007-05:00

~ The breasts go first, and then the waist and then the butt. Nobody ever tells you that you get a butt when you get pregnant. Then the arms and the face!!! Why does the baby need a fat butt/legs/arms and face??? ~

Last year at this time I had just completed Ironman Florida!!! A baby was never even considered, thought about, or even dreamed about. I had already signed up for certain races, planned on racing others. I went from one extreme to the other! From uber athlete to uber pregnant. :) When I found out I was pregnant, I was determined to keep exercising and would have kept competing if they let me. :) Being pregnant is highly restrictive and some activities were limited from the get go. The first activities to go were mountain biking, rock climbing, scrambling, roller coaster riding :P, sky diving, scuba diving and anything where I could fall down and hurt the baby. :( I am a person who loves the adventure and trying new things, and I definetely don't like being told what I can't do. haha! We went to Jamaica around 12 weeks, and didn't get to scuba dive, swim with dolphins, etc etc. It was the first place where I found out they don't let pregnant women do anything!!! Lots of people have their opinions on what you can or cannot do, and they are not even your doctor! They are not shy either and will tell you things like, " you are killing the baby" if you do that. DRIVES ME NUTS! They also have opinions on how much you should weight, and what you should look like... I would never go up to someone and say, " you are way too big/fat... stop eating so much" or " you look like shit!" Its crazy to me.

Sometimes, I feel like my doctor is perfect for me because he has never told me I absolutely can't do anything. :) For example, when I first found out I was preggo, I asked him if I could still run like I used to... he said yes, and i said trail running for 6 hours several times a week? and he said yes, just nothing technical where I could fall down easy. I remember thinking that was strange that my doc said I could still run 100 miles a week. The next appt I saw him, he asked me if I was able to still run as much as I want, and I laughed and said, NO... way too tired/sick to run that much. He smiled and said that he figured I wouldn't be able to, but better to let me decide than tell me I couldn't. OH SO TRUE! And I was happy to read about Kara Goucher, Paula Radcliff, and Deana Kastor, all top marathon runners, talk about running while pregnant, and how tired they were, etc etc! So, I will write about my experiences, and tips for running while pregnant!

Running:
Just until recently, I was a member of the third trimester running club!! :) Everyone said I wouldn't be able to run in the 3rd trimester, but I love to prove them wrong... But there are some items that I needed to be able to accomplish this. First, a pair of shoes, without shoe laces that you can just slip on!!! Trust me, you don't want to be running and have to stop and try to tie your shoes with a huge belly! Luckily, being a triathlete, I have a pair of Zoot shoes, so when I had to buy a bigger pair while preggo since your feet swell up, I bought these shoes! These shoes are awesome!! super light, and not thick so EM doesn't freak out.. I can't run in sandals while pregnant, because my ankles are so unstable, and stressed because of the extra weight, but these shoes are perfect. My feet are have been the worst bit of running and some days the pain in the bottom of my feet make it too painful to run. Maybe its the extra 30 lbs ???

Another item I needed was a "belly band" and/or maternity support belt. These things are a must to keep the bouncing to a minimum and minimize back pain. I started out with the normal belly band from Pea in the pod, and then the Amon exercising band as I got bigger...

These things really helped!!!! then some days when I needed even more support I used this maternity belt, which is supposed to be the most popular belt for runners!

another necessity is to figure out where to pee if needed!! All the bouncing and moving around along with the pregnancy pressure on your bladder...makes you want to pee your pants!! still wanting to find anti chaffe diapers to wear while running.. :) haha...

You also need maternity support bra for running, and maternity athletic clothes. I love the Born Fit maternity skort ! and Destination Maternity has a Reebok for maternity section that is awesome!@@ I know some people say just to buy big sizes of normal clothes, but they make you look like a cow! The maternity clothes fit your preggo body which is less chaffing, more comfy while exercising, and make you look great and PREGNANT and not fat. I guess it is up to you regarding clothes.

But running in your 3rd trimester can lead to very strange looks from people... guys usually think its cool, probably cause they admire a girl trying to keep weight and/or get back to normal weight after pregnancy, but some girls are just mean. I'm not hurting the baby in any way, and I actually think he loves it. My doctor gave me to ok to keep running all the way up to due date (until prelabor scare see below) and so as long as it felt ok, I decided I was going to keep doing it. Don't get me wrong, you do run a lot slower, and you take walking breaks a lot... sometimes its like the Ironman shuffle where you run for 5 min and walk for 1... and don't get me started at trying to run up a hill while preggo, doesn't happen for me!! just have to make sure you don't get too out of breath, dizzy or over heated.

and if at all possible, and you have a pool , after running... jump in one!!! I was in Tampa and I was running in the heat and got overheated, so i just jumped in fully clothed!! HEAVEN.

2 weeks ago, baby Z decided he wanted to try to come out early and I needed stop labor drugs. I was on complete bed rest for 1 week, and now I'm on light activity such as walking/swimming and maybe next week at week 35, after all tests on baby weight etc are fine.. doc said i could try running again... don't know if i will be able to ? or if i will be too big, but water running/swimming is still great! anything but bed rest!!!!!!!! so if you see a whale running... its probably ME! :)

30 weeks 3D!!

2010-10-18T18:20:00.006-04:00

~ It is said that the present is pregnant with the future ~

What a fantastic weekend! I got to see baby Z in 3D and had my baby shower in Rhode Island! We had our normal OB Doctor 30 week appointment on Thursday prior and found out the baby is weighing 3.5 lbs. :) He is getting bigger, and stronger, and he loves to kick/punch the crap out of mommy. He is a Baby Ninja, and like the ninja assassin movie, he has his "weapon" which is his umbillical cord with a knife on the edge that he loves to swing around. :P They say to have 10 kicks per hour and Ninja does about 10 kicks in 30 seconds !!! I don't know what he is doing in there, especially at 2 am, but it is an insane amount of kicks, punches, head butts, whatever he can use!! Maybe he is doing an Ironman??? or maybe he is UFC attacking me from the inside....

We drove up to R.I. Saturday morning and went to our 3D / 4D scan and baby is so cute!! He started out in his normal protective fight stance with his hands/arms in front of his face, but eventually lowered them occasionally...probably to punch me. :) I was telling the tech about how he loves to be cheeky monkey and he gave us this adorable smirk!! He knows he is a cheeky monkey!!! :)

I love it when baby opens his eyes!! felt like he was looking at me and saying hi mommy! I wish I could see him everyday! I won't get to see him until he is born now... and that is scary in itself! :P Daddy Dan and I kept arguing about who the baby looks like, but it is really
hard to tell right now... but of course if he is cute, he looks like me... giggle! :) He is def. active like his mommy!!! I bet he comes out running/swimming/swinging .

I can't believe he is almost here! A couple times in the night I wake up Dan yelling at him that I want to be induced!!!!! Whoever said pregnancy is great... was either lying or insane. It is so uncomfortable now!!!!! I hope baby comes out earlier than later. I told the OB doctor that I wanted a TRANSPLANT..... transplant baby to Dan for the last few weeks.. wouldn't that be cool?? haha. Joking aside, I wonder what baby is going to be like?

~Love is all fun and games until someone loses n eye or gets pregnant ~

BABY MOON

2010-10-04T20:20:00.005-04:00

"I just wanted a back rub"

We went for our baby moon to Florida for 8 days. You might be wondering, baby moon??? A baby moon is your last vacation before the baby is born. I personally think it is where you go on the beach in a bikini and show your "moon" aka baby belly to the world. :) I guess it is supposed to be a celebration similar to a honeymoon, but without the ability to drink champagne..

We normally would have gone to the Carribean or other island, but to be safe, we decided on Florida. The doctor said it would be the better option. It actually turned out to be the better option with the hurricanes and storms throughout the Carribean. We had also thought about Miami, but that was hit just as bad. We went to Tampa for a few days to see friends, and Sea World, Sarasota for a few, and Clearwater as well. It only rained a few times and it was sunny and 88 -90. I saw that NY had rubbish weather while we were gone, and rubbish weather when we got back so I was tempted to tell Jet Blue that I was going into Labor just so I could stay in Florida and have the baby here. :) :) :) They key to having baby moon is to make sure you are still able to fly. Most domestic airlines will let you fly up to 32 weeks, and International are 28-30, but both have the option to not let you fly if they feel you are at risk. Cruises are worse where they don't let you cruise in your 3rd trimester, but I suppose that is because they are farther away from shore in case of emergency.

Traveling in 3rd trimester:

Must have a pillow, wedge, boppy, something to shove behind your back because the airplane seats are horrible for pregos! Unless of course you are flying first class/business class and have reclining seats. But for the rest of us in the back, get that pillow! I used a boppy wedge and it helped a lot...it is still uncomfy, but you are in the 3rd tri, when is it comfy????
Be aware your feet are going to swell up like tomatoes and your calves are going to ache. Not to mention if you have sciatica like I do, sitting in those seats for 3 hours is torture. So get up occasionally and go pee, you know you are going to have to go anyway! The trick is fitting your whalish self into the bathroom. And of course walking down the aisle when someone insists on trying to squeeze by you at the same time!! They just don't get that we can't "suck" it in!! If you are lucky they will let you cut in line to pee though, which is a bonus. I also got double scooby snacks as well!: chips and cookies :) There are a few perks to being preggo, so might as well enjoy it!
you have to have a lounge chair for the beach/pool. There is no laying flat on concrete or sand, and def. no laying on your belly. If you do manage, my hats off to you. Dan did offer to hollow out the sand for the baby belly to see if it would work, but luckily we had access to lounge chair on beach. It still gives you a funny tan lines when you cant lay on tummy, but you make do and lay on side. The sun feels wonderful and the ocean/pool feels AMAZING! I could live in water right now if I had a raft and a floating fridge.
Bring lots of sunscreen... you have more coverage needed now with extra belly skin.. haha. Oh and if you need help, get Dan or significant other to help rub lotion on legs and feet since it is harder to reach, and your legs/feet ache anyway so a rub is always nice. :)

Don't forget your camera!! You can get some cool shots of the belly if you can get used to everyone staring at you. Some probably think that I shouldn't be in a bikini, but flaunt that belly! The only problem is, you have to see all the skinny chics in their bikinis showing off their skinny legs, bum, and tiny waist. It can give you a complex! Just make sure your partner knows that crazy psycho pregasaurus lady will come out if he stares at them in any way and he won't want that! He should know by 3rd tri , that pregnant ladies can be crazy!!
Just try to enjoy yourself!!! Yes it may not be as much "fun" as if you are not pregnant. You can't scuba dive, jetski, ride roller coasters, drink alcohol, etc etc. But you can still have fun! You can always get a pregnancy massage and most hotels with spas have this option. Enjoy the sun, water, food, ICE CREAM... don't forget the ice cream.
and spend that last quality alone time with your partner before baby comes! and take care of yourself. Take walks with him on the beach, take a drive to another beach and see the sunset, do whatever you want to do. Yes, it may be uncomfy, but you can't beat the views!

"People are giving birth underwater now. They say it's less traumatic for the baby because it's in water. But certainly more traumatic for the other people in the pool. "

IT'S A BIRD...IT'S A PLANE.. ITS A BABY ??????????

2010-06-25T10:20:00.008-04:00

"A grand adventure is about to begin." -- Winnie the Pooh

As I look back at my life, I sometimes wonder where and who I would be if I didn't have EM. I've been through a lot of pain and struggle and sometimes feel it is a miracle that I am even still here let alone do the things that I do. I remember 6 years ago getting the diagnosis, thinking my life is over... I never thought I would be where I am now. I have done a lot of things that have been really hard for me to do... running, Ironman, etc... now I have my biggest challenge yet, PREGNANCY.

I have had 2 unplanned pregnancies and miscarriages 5 and 8 years ago, and I just chaulked it up to the poor baby didn't stand a chance with EM. Maybe my body wasn't able to have kids? The doctor said I would probably need help getting pregnant in the future... But, maybe I shouldn't bring a child into this world with the risk of EM? All these thoughts have been running through my mind for years... and now it is real. I pray that my baby doesn't end up with EM. It is a scary thought for a mother to bring a child into so much pain. You want the best for your baby, and EM is not it. I pray that if the baby does end with EM, at least the baby will have me to teach 'em how to live with it. As painful as EM is, at least it is not a death sentence. Maybe, the baby will find a cure for EM some day. :) I guess we will have to wait and see. Either way, my baby is a miracle. Even through birth control pills, EM drugs, running like a crazy woman for 2 months training for my 50 miler not knowing I'm preggers, and falling off a cliff during my race. My baby was meant to be! and sounds like he/she takes after mommy.... DETERMINED TO BE ALIVE AND VERY STUBBORN. :) YAY BABY!

Right when I found out I was pregnant, I had to get off of Amitriptyline which can cause birth defects in rats and possibly humans. It is funny to think back on my doctor's "weaning " off it schedule, but it wasn't funny at the time!! Apparently, you can't go cold turkey and quit it because it can cause seizures, death, and possibly problems with the baby... so he says " Day 1, 50%, Day 2: 25%, Day 3: 25%, Day 4: Zero!!! It made me so sick!! my feet were horrible, I couldn't sleep... IT WAS A NIGHTMARE! But I had to keep reminding myself that it was best for the baby. During the 2nd and 3rd month, I had horrible "morning sickness". Don't know why they call it morning, when it was 24/7.. it was worse at night, and I just lay in bed trying not to puke. I couldn't run either, partially because of my torn tendon, but mainly because if I thought about running, I would puke! If I read my ultra running magazines, I would puke! Anything green would make me puke as well, especially asparagus.. blech. I could smell if someone had eaten it and it made me puke. The worst bit was car/subway/motion sickness.. I threw up on the subway on the way to the OB doc and it was so embarrasing!! At least when I hit the 2nd trimester, it went away!!!

I was super nervous going to the first trimester screening scan at the hospital where they try and determine spina bifida, and down syndrome. My baby wouldn't cooperate at all and it took 2 days for him to finally be in the right position. And baby was fine!! YAY BABY!

Cravings: CHEESE, CHEESE, WHOLE BLOCKS OF CHEESE

2nd Trimester

Yay No sickness, and I was able to run again! Ankles were swollen and painful, feet swelled, stomach starting to stretch, hard time sleeping, and EXTREMELY HOT. My cats normally shed in the summer, this year, they are furrier than the winter!! Dan says because it is so bloody freezing in here... but i don't care! A prego girl with EM is going to be HOT. I just tell him " I dont care if you turn into Frosty the Snowman." :)

ITS A BOY!

Week 17 we go to a Ultrasound place in R.I. with my parents, Nana, Dan and my aunt! It was still too early for 3D, but we wanted to know the sex of the baby. I knew he was a boy, but I think my family wanted a girl because they don't have any girl grandkids. But, Dan says that his family only has boys too, so it was pretty certain to be a boy. Of course he wouldn't show us his bits... until I gave him chocolate. SO the joke is : Baby will flash for chocolate. :)

Week 20 we went back to the hospital for the Anatomy scan where they look at all parts of the baby...and everything looks normal! YAY BABY! I love looking at him ...he is so cute!!

week 23 we went back and had a 3D and 4D pictures and video done... he is starting to look like a baby now and less alien like.

week 26 went in for blood glucose 2 hour test, and that orange drink is horrible@! the 2 hour wait wasn't fun either, and my glucose turned out normal. YAY can still eat chocolate.

I know it has been a while since blogging, but I will try to keep up with during these last few months with my details and hopes and fears.

Cravings: WATERMELON, LOTS OF IT ...EVEN with cheese. :) and Peanut Butter

"Everything grows rounder and wider and weirder, and I sit here in the middle of it all and wonder who in the world you will turn out to be."

"If you have never failed... you have never lived"

2010-05-08T16:59:00.004-04:00

"No matter how well you know the course, no matter how well you may have done in a given race in the past, you never know for certain what lies ahead on the day you stand at the starting line waiting to test yourself once again. If you did know, it would not be a test; and there would be no reason for being there."

Today, I attempted to race the North Face Endurance Challenge Bear Mountain 50 miler. I was doing good until I fell off a cliff. Yes a rock cliff, at least 20-25 feet. They say when falling you see your life flash before your eyes... I saw no such thing. Maybe because I didn't fall very far? haha.. Although, I remember thinking: this is it. I landed on my left foot on a rock and then fell into a bush. I lay there for what seemed like an eternity. Was I dead? Was I paralyzed? I just lay there not moving, not able to call out for help.. I remember thinking this is nice. Floating there, not feeling anything. I might have passed out, I have no idea? I think I must have hit my head.. see later. Then all of a sudden I heard this voice, my voice? who knows? The voice said very loudly: GET UP! GET UP NOW! so i managed to pull myself to my feet. I had a few cuts on my left leg, but the rain managed to wash the blood off. My foot though... my injured foot.. the poor foot that I tore the tendon in February that threatened this race in the first place, OW. I was doing so well too! So how did this happen?

I started off the run in the dark at 5:15 am. I have no night vision whatsoever. The optoneurologist from Mayo said that because of Erythromelalgia, my blood vessels that don't dilate/constrict properly/adjust to change makes in really hard for me to see at night with bright lights shining in my eyes.. My eyes just can't adjust. I'm running along with my head lamp, praying that i don't fall. I'm holding a decent pace for me. My coach told me to start off slow and then go slower... Sometimes, its embarrasing. I AM SLOW. I don't think someone with EM is supposed to run. Hell, they said I couldn't walk... but no means yes to me. I am determined to run, whatever it takes. But, I need to be more accepting with myself. I may be slow, but I try as hard as I can and that is all that matters. So, I'm running along at 11-12 min mile pace... pretty good for trail at Bear mtn. I hit the first aid station at mile 4 ish at around 48 minutes. Good . I was a right on pace. They give you 14 hours to finish, and I know I slow down a lot, so I wanted to run the first half in 6 hours to give me plenty of time to slow down, or hit the really hard technical bits. At mile 5 ish, I fell on my left leg. Great! had a small cut on my left knee that was bleeding, but I felt a twinge in my injured foot. Who knows if this had a helping hand for the big fall/injury? Then I fall again, and again. Humpf. I ended up falling 4 times before mile 16. Guess it just wasn't my day???? I'm still holding good pace. Run run run. Then it starts to rain....

Somewhere around mile 17-18, It started raining cats and dogs... monsooning on me right when I was climbing these huge rocks/cliffs/whatever you call them. Most of the time, I LOVE running on these huge rocks because they have such great grip... much better than stupid leaves. EXCEPT FOR WHEN ITS POURING! in combination with some huge wind gusts, down I go. I felt like humpty dumpty. I never recovered from this fall. Unfortunetly, there was no one around, no one to see me fall, and no way for them to help. Thank goodness, I could walk. So I stumble along, crying, trying to make it to mile 20.7 aid station. I kept going and going and going... mile 21, where is the aid station? Mile 22... wtf? BLEEP BLEEP (*_&(*^*)&$&%#^@@@@@@@!!!!im looking at my watch and all of sudden i'm approaching the cut off time ? how long was I out/laying there? I was on track to hit mile 20.7 at 5 hours.. and now it is 540? FINALLY, AND I MEAN BLOODY H-LL.. i see the parking lot, I see Dan, my coach Dennis, and Susie. I'm crying and hobbling, wondering.. can I go on?

"You hear about how runnin' ultras is all mental; well, I sure wish
it'd hurry up and get mental, 'cause it's feelin' awfully physical
right now."

I talked to Dan/Dennis/awesome NF aussie dude, and decided (dumbly I might add ) but with a possible brain injury/ shock.. and I'M STUBBORN. Hindsight, I would have stopped... but I thought maybe i could run it out. :P Did I say I'm stubborn?? The problem is, the next aid station is 7 miles away@!@@!!! I was doing semi-good holding 11-12 min mile pace on the fire road. My foot was tender, and then about 3 miles into it, really sharp shooting pain starting at my foot and all the way up my tendon, leg. To make things worse, I started throwing up. Didn't even slow me down. All I could think about, was making the next cut off time and never giving up. I threw up 6 times, and then started hallucination rats of all things. What happened to the big fluffly Ironman bunny?? I much prefer the bunny who cusses versus RATS WHO ARE MEAN. I had lots of conversation with these mean things. They told me I sucked, wouldn't finish, wouldn't ever finish a 50 miler because I suck. I told them to shut up and stop being so mean or I'll feed them to my big kitty cats, and they said that my cats couldn't eat them because they suck like their momma. Didn't occur to me until later, hours later, that maybe I did hit my head... vomiting, hallucinating, head hurting. duh... at some point I miss a turn probably cause I was busy talking to rats, and these 2 dudes in front of me who also missed it. Ended going 1 mile or so out of the way. Guess I needed a bigger challenge ???? Cause when I saw the sign I missed, I must have been out of my mind. :P

anyhoo... I'm hobbling along, now with rats and annoying REAL bugs who decide to try and eat my face off. Hoping I can even get to the aid station. One guy tells me we have to climb this huge ridge called Breakneck Ridge... ( fabulous ) and then even worse.. climb down!! I have no stability in my ankle and it hurts like bloody hell .. HOW AM I GOING TO GET DOWN?????????????????? Then what seems like forever, I see someone walking towards me, and guess who it is??????????????????? DAN!!!!!!!!!!!!!!! Please make him be real! PLEASE! and he was! unless I came home with a doppleganger... haha YAY! He had to help me down this frickin steep thing because otherwise i would have superman'd it down... and it didn't look nice to slide down on my bum either. YAY! The aid station!!!!!!!!!!! yay! I managed to make it to mile 30 before giving in. Could I have continued on? maybe, but doing permanent damage and possibly preventing me from running for 1 year + if I completely tear the tendon. And at that rate, I would need a miracle to make it to the second hard cut off at mile 34. I COULD BARELY WALK let alone run. SIGH. I tried really hard to "stand up to reality and DENY IT". I begged, pleaded, YOU DON'T EXIST, YOU DON'T EXIST. But unfortunetly, my reality/injury did exist unlike the rats.

I hate DNFing, I HATE IT. I feel like a quitter. I feel I didn't try hard enough, that I wasn't strong enough. I don't like to admit that I am not a "normal girl", that I have EM that makes it hard enough to even run let alone fall off a cliff and still keep going. I HATE EXCUSES. But, I am smart enough to know and to listen to my body. Run through pain not injury. So I live to hopefully run again someday. Hopefully, sooner than later. I will do a 50 miler again. I WILL NOT SURRENDER. It took me twice to finish an Ironman. I never do anything the easy way, I always have to push through multiple obstacles, but I think that is what makes the "victory" sweeter. SO, when I am able to finish that 50 miler, its going to feel so good! and hopefully, what I learned today, will help me improve.

AND MAYBE NEXT TIME I FALL OFF A CLIFF, I will make sure to land on those bloody rats!

"Far away, there in the sunshine, are my highest aspirations. I may
not reach them, but I can look up and see their beauty, believe in
them, and try to follow where they may lead."

Where are your feet??

2010-03-12T18:51:00.004-05:00

"Endurance training is exactly like turning a Styrofoam cup inside out. So long as you take it slowly you'll be able to do it. Try to rush things and "rip"....you'll tear the cup. You are the cup."

On my last snowy run, I injured myself. The doctor doesn't know if it was 1 ankle twist, or the cumulation of snowy trail run in shoes and yak trax, but I partially torn the Perroneal Tendon in my left foot. I tried running the Wednesday after my birthday, but the pain was too much.

I went to the first podiatrist who gave me xrays and some unwanted advice. She said that I horribly abuse my feet. She lectured me of the dangers of wearing flip flops and how it causes bunions and have no support. She yelled at me for not slathering my feet in lotion and wearing socks overnight to keep them soft. She stared at the horrible blisters all over my feet, and the multiple bruises/blood under my toenails and the eventual loss of several nails. She went on and on about the "perfect foot" and how I need to wear socks and lace up shoes at all times, orthodicts, etc etc. She finally said that I should have listened to the doctor in the first place , when he said I would be in a wheelchair and never run again. ?? She asked me why I run ? and why I didn't listen to the doctor and how doctors know best. I told her that Doctors don't know "me" and how much determination and inner strength it took me just to be able to run and I thought of this quote and smiled at her.

"People ask why I run. I say, If you have to ask, you will never understand. It is something only those select few know. Those who put themselves through pain, but know, deep down, how good it really feels. "

I looked down at my feet in an outrage. THOSE ARE MY FEET! MY EM FEET! I am proud of my feet... they have been through a lot. They have been severely burning for 6 years, swelled up 4 times their size, and yet through all that EM pain, they have not only survived, but thrived. How dare you lecture me on feet!!!! especially when you have no idea what EM is. I wear flip flops out of necessity, I can't slather them in lotion and put socks on them, and I sure as hell cant confine them in the heat in socks and shoes all the time!! I felt like a victim needed to be heard. I may never have "perfect feet", I may lose some toe nails, and have swollen feet with bruised nails, but they are IRONMAN FEET. My feet have taken me to fulfilling my dreams, and my feet are strong. I huffed and I puffed and I marched out of that office with my limp and a soft cast that I knew i couldnt keep on any longer and a moon boot. I got home and cried. How do you have the right to stomp on my dreams? I have done the best I could with the crap given to me. I'm sorry but since having EM, I have not been concerned about the damage done by wearing sandals year round. I have not been concerned with striving for the perfect foot. What kind of life would that be? She must have a very boring life. I just couldn't believe she would tell me to stay in a wheelchair.?? its not like my injury was so severe that I couldnt run/walk again....and even if it was, I would try anyway. So I listened to the important small bit and decided to get a 2nd opinion...this time from a doc that actually runs . :)

The second doctor I went to was thankfully, drastically different. He too didn't know about EM, but he was fascinated by it and told me he would research it before my next visit. He said I was an ENIGMA.... haha. He gave me an ultrasound and examined my feet. He pushed and prodded and pulled and none of it hurt? He was suprised when he looked at the ultrasound and saw a tear in my tendon. He pushed/pulled at my foot to see if it hurt like most patients with that injury and it still didnt. Once again, the EM pain is too strong for me to feel the smaller pain of a torn tendon. The only time it really hurts was full bodyweight. He actually listened to me and didnt put me in a cast. :P I ordered this really cool ankle brace that you can run in. :P He told me no running/weight bearing activity for 2 weeks. I needed to rest it and no physical therapy either. He said that because I can't feel when I'm hurting my tendon so while it is torn, REST REST REST. He did say I could bike, swim, and water run as long as I could stand it... Funny because you can't tell an Ironwoman like me I can bike/swim/water run as much as I want to.... He probably should have given me a limit... wink wink. Anyhoo, I was upset about no running. I tried to remember when I couldnt run and the 4 years I dreamed of running. Its only another 2 weeks... sigh. I wondered how much running fitness I will lose, and I wondered about the 50 mile race I have planned and if I could still do it. I wondered where I went wrong...The doctor said to me that he is the last person who will tell me I can't run. He used to run until he blew out his knee so he knows what it is like. He says " You live to run another day" LOVE IT!!! finally a doc that gets it.

"There is no failure, only feedback."

The first week it hurt to walk even with the brace...partly because my left toe was killing me!! and for some reason my uninjured right foot was in a horrible flare all week......the weather? I am just thankful for the bike trainer Dan bought for me! It didnt hurt at all to ride my bike indoors with a brace. So I pedaled and pedaled for miles. As good as it felt to still be able to bike... indoor biking isnt the same. But, luckily there was a huge snow storm so I didn't miss being outside. :) and Barbara, miracle worker, came to see me and give me a lymphatic drainage massage. Suprisingly my feet healed and my infected/burned toe healed so I didnt lose it!! yay! I did lose the 2 nails, but that doesn't really bother me... maybe now I am anti perfect foot anyway? I'm such a rebel!! what do they say?

"If you haven't lost any toe nails, then you haven't run long enough?" *giggle* I've been told that some ultrarunners permanently remove their toes, but I'm not that crazy... ouch. I started to think about the approach I took to trail running... Pedal to the Metal, all out approach, not thinking about what could go wrong, and if I could get hurt. In mountain biking, I've learned that the slower you go, the more likely you are to fall... so maybe taking that approach with trail running was wrong?? haha... just hurled myself along the trail/snow...trying to keep up, having fun...and twisting my ankle so many times I lost count. and now being injured I have to start from the beginning again and figure out what I need to do differently this time around.

"Sometimes when you walk through a maze you have to go back to where you started to get to where you want to go."

So basically, I've learned I have no idea where my feet are. May sound strange, but its the truth. The "good" doc said I have absolutely no proprioception whatsoever. He did some tests and it was pathetic really. I knew this already from training with the North Face group when we close our eyes and do drills and I couldn't do it. He and I suspect its because of EM> my nerves have been on fire and in such pain for so many years now that I can't feel when I twist my ankle or feel when I hurt it. AND I have no idea when I'm putting my feet in a dangerous position on the trail because I spend so much time, "ignoring"/not listening to pain in my feet. Sigh... once again , stupid EM pain, and my strength in handling it, HAS HURT ME. How did it get to this? So far, EM pain has almost killed me for not feeling a ruptured appendix, not feeling a massive infection in my tooth leading to sepsis, not feeling a dislocated shoulder/elbow, and not feeling burns, and tears in tendons, and kidney infections. Makes me wonder, what else have I not felt????????????? Would I even feel it if my head was screwed on backwards???? How do I stop this? I've gotten good at running/biking/swimming with extreme pain. How do I go back to feeling every little baby pain. Is it even possible? or is it permanent nerve pain? Basically I have to completely start over and try to feel every senstion, including the extreme EM pain again. SIGH. Not sure I want to.

"The path to our destination is not always a straight one. We go down the wrong road, we get lost, we turn back. Maybe it doesn't matter which road we embark on. Maybe what matters is that we embark in the first place. "

On a strange note: I have now developed Raynaud's Phenomenon in my left foot. Maybe the injury has caused it temporarily? or permanently? The doctor said my left foot was in a complete vasoconstriction and may have helped cause the toe problems because of frost bite. WTF???????? I just keep getting weirder and weirder. He says for now, I have to keep my left foot warm and wear socks and boots in freezing weather.. ??? HOW AM I SUPPOSED TO DO THAT????? when my right foot still has EM and can't tolerate... the shoe/sandal situation baffles me. Whatever the reason, Raynauds is quite nice compared to EM. I don't feel the burning horrible searing pain, it turns white instead of red and doesnt swell up at all. Supposedly, Raynauds patients feel a cold prickly pain sensation but I dont feel it. Maybe I should injure my other foot????? no seriously. WHen I told the doctor that he looked at me like I was insane. But EM patients know exactly what I am talking about. I read in the forums all the time how EM people are desperate enough to try ANYTHING to get rid of EM. Some EM people get EM from injuries and is not genetic and they want to try reinjuring themselves to make it go away. One of the first known case of EM asked for both leg amputations and got it done thinking it would help him but of course it didnt. Pain will make people do funny things. So don't judge me when I joke that I should injure my other foot. You really have no idea unless you have EM. I wonder if it is just temporary? and why my right foot has gone crazy with EM lately. I look strange with 1 snow white foot and 1 freakish burning red foot. I also wonder why I didnt feel my right toe nail pain, and yet I felt the left toe pain like crazy. ? Maybe I'll figure out this EM thing someday. Maybe I will finally know the reason I came down with EM and how to trick it back into constriction? Maybe I will finally find the inbetween and get back to normal. My Raynauds foot feels the most "normal" it has felt in a long time... not to diminish Raynauds pain, but for me, I'll take it anyday...just wish it would be balanced.

So here I go again... doing my proprioception drills, trying to come aware of my feet and what is good for them and what is bad. This time I will be better than before, prepared, humbled, ready to be taught. The doc said I could run on last Wednesday, and I did... AND IT WAS AWESOME. On Friday, it was a miserable rainy day and I ran... and LOVED IT. And next week I can start trail running again. This may have slowed me down, but it can never stop me. NEVER STOP ME. So to all the EM, Raynauds, and Pain disorder people: lets stand up to the naysayers, to the ones who try and stop us, and the ones that call us freaks, to the ones that tell us to give it up and stay in a wheelchair. We need to stand up to the Doctors that think they have the right to take our hope away. They can try but they will not trample, we are strong, we will never give up. We will not let doctors tell us what we can't or cannot do based on their negatively and something they don't understand. I am the only one that can tell myself I can't do something, and I don't have to listen.

HAPPY TRAILS!

"I don't run away from a challenge because I am afraid. I run toward it because the only way to escape fear is to trample it beneath my feet."

Erythromelalgia Running Rebel

2010-02-16T13:05:00.008-05:00

"Life is short….running makes it seem longer."

Yesterday was my birthday, and I did something amazing. It might not have been as far as others, or as fast, but just as challenging. I ran 5 hours on a snowy trail, with shoes and socks, and yak traks on. Yes, I repeat.... SHOES, SOCKS AND YAK TRAKS. It has been 6 long years of running in sandals, and I can't remember the last time I wore socks while running. It has been something I have dreamed about since being first diagnosed with EM. I thought shoes, boots, and socks would never be again. I remember the first year with EM, I could wear flip flops in the snow and it would feel so good because of the intense heat pain. I couldnt even wear shoes in the winter back then. I have done all my races since then in sandals... and now 6 years later, I did something I never thought I would do again. Run in socks and shoes!! Finally, after years of burning pain, years of convincing my mind that I wasn't dying and that pain is not going to kill me, I found that in freezing weather, I can FINALLY wear shoes. Only someone with EM would know what that feels like. It has been a long hard road where I have tried to wear shoes and socks and failed. The burning pain has always been too much. Each year I have gotten better at dealing with the pain. Each year closer to being "normal" and to stop people staring at me and making fun of me of wearing flip flops in the winter. Just this year I started wearing trail shoes while running in the freezing cold.... AND I LOVE IT! Its like Im defying the doctors, defying the people who said I would never walk again, never wear shoes and socks, and be in such extreme pain that I would never have a normal life and never accomplish my dreams..

look at me!!!! I'm not only in shoes and socks... i'm in yak trax!!! clamps that go around the shoes to give traction in the slippery snow. At first I looked at the yak trax like they were torture machines. I feared my attempt to run up to 41 miles in the snowey trails would be too much pain I could bear. Not because I am afraid of pain, but because EM would prevent me from finishing again.

I went to the sports store with Dan on Saturday. I bought SOCKS!! I don't know what the new socks are like these days to prevent blisters and to protect trail runners from the elements. I felt like it was the first time I had ever bought socks and felt proud of myself. One more step in the battle against EM and its limitations. I have met some amazing people from the North Face Running group, and they gave me tips of the best trail gear. I bought trail shoes from Innov8 !!
Well, Dan bought them for me as part of my birthday pressie. I HAVE RUNNING SHOES. The only other running shoes I have are my zoot tri shoes which I won in Cadence Challenge 2 years ago.. I have run in them on the streets this winter when it is below freezing, but with no socks. It feels so good to get running shoes for my birthday!!! I know it sounds weird, but any shoe, boot, sock I wear, its a luxury for me... something I didnt think possible. !!! yippee! slowly but surely. I feel like an EM rebel. ;)

I have been running in Harriman, Bear mountain with some trail running friends and I love it! I love it more than running on the road...it feels like I'm free and its so much more challenging. They are so fast and cat like when they run. Maybe I can be like them some day, but now I 'll settle for finishing! I signed up for the 50 mile Bear Mountain run in May. Lots of people think I'm crazy for doing it.. but why not? something new for me to try. And if I fail, I will try again tomorrow.

So, I find out about this organized run from Croton Dam in Westchester all the way to Manhattan on the Old Croton Aqueduct Trail. And it was on my birthday!! What a cool way to start a new year! ? I'm not a morning person and yet I get up at 5 am on my birthday to go run possibly 41 miles in the snow!!! I knew I wasn't going to finish the 41 miles considering my longest trail run was 15 miles, but I wanted to go at least 20. We take the train up to Croton Harmon and we run north about 3 miles to get to the dam.

The OCA trail is hard to follow because its not completely straight through anymore... you cross streets and have to find the trail again. We got lost the first 3 miles... haha But we just ran a little longer than planned. ?

Its hard to run in snow, I twist my ankle a lot, some uneven footing. I try to keep up, I'm not used to running in socks, shoes and yaks. The longest I have run on the trail is 3 and a half hours. My goal is to go at least 4. We wind around, run behind, run through, run over, run into, and have fun. And I managed to not fall down this time!!! woohoo. Susie and I run most of it together and we take pictures during the run partly because its fun, we bored and we want to document it.

about halfway, we stop at a gas station to refuel. I got some water, some super coke, and Susie and I split a bagel. It was the worst bagel ever...stale, dry, old, but it tasted great! Its amazing what you think is good when you are hungry. The coke gives me a very short surge. Wished it lasted longer! My back hurts from carrying the pack, my legs hurt, and my feet are killing me. Right here is where I noticed a strong toe pain, but managed to ignore most of it. At mile 20, I was getting slower and slower. Feels like every marathon I do, slow and painful anything more than 20. It is clear I wasn't going to make 41, but I made it to 20! We kept running and running and running and running. Susie and I hit mile 25 and we make an assessment. It is 3 miles to go to Yonkers. Her foot/ankle is killing her, and I am tired and don't want to run alone and get lost. So we bail at 5 hours. I limp to the train station, wanting really badly to take off my shoes and socks, but realize if I do, they wont go back on again. We wait for the train to arrive and I sit down proud. I went longer than I thought I could do and am excited for future runs where I get faster, stronger, and can run longer.

I get home from my run finally. Dan had a bubble bath ready for me and was cooking me a great bday dinner, and presents and cake! Yummy. I look at my feet and realized the casualties of this shoe war. I am losing at least 3-4 toenails.! I forgot what it is like wearing shoes and jamming toes into the front and I can't help but think the yak traks also made it worse. My feet swelled up like normal and have horrible toe pain because of it. But I look at my horrible looking toes and a battle wound and wear them with pride. Today in the fight against EM, Kate won, and is ok dealing with the war wounds.

I will attempt that run again, and will finish the 41 miles. The key is to figure out what you can do now and what has to wait for later. I could have ran longer, I could have made 30 at least, and possibly more, but I would have been wrecked. I hadn't trained enough for 41 miles and didn't want to destroy myself and possibly injure myself beyond repair. No excuses, just acceptance that I live to run another day. :P So here I am, rebelling against EM limits, running and playing, in shoes and socks, and doing things they said I couldnt do. :) What a great birthday.

"Whatever. There are no tricks. Run because you have to. Run because you love it. Run because you want to be fast. Run because you want to be skinny. Run to find some quiet time. Run to sweat. Run to eat. Run hear your heart pound in your ears. Run because you're a runner. Run because you gotta keep the streak. Run because you don't know why the hell you're running. Run because you fought with your partner. Run because your job is shitty. Run because you got no money. Run for the sunrise. Run for a race. Run because it's impossible. Run because it's easy. Run instead of doing the laundry. Run instead of watching TV. Run because no one else understands. Run because the cool kids do it. Run because you're tired of talking. run for numbers. Run for feel. Run to prove something. Run because it fucking hurts. Or don't run. If you got something better to do." - Jeff Edmonds

The Butterfly Effect

2010-01-24T11:57:00.009-05:00

"Just when the caterpillar thought it's life was over, it became a butterfly"

WWW.BURNINGBRIGHT.ORG

I am creating a new website for Erythromelalgia sufferers at http://www.burningbright.org/. The website is a place for sufferers who want to make their voice be heard, who want to help in creating awareness for EM, and for those who want a hopeful place where their dreams can also come true. This is a site to go along with the EM site at burningfeet, but where their focus is on finding a cure, which is great and hopefully will find a cure, our site is for the sufferers themselves. Eventually, am forming a foundation as well which will try to raise money to help EM sufferers accomplish their dreams, pay for alternative treatments where insurance doesn't cover, and help them be proactive in raising awareness. A cure may not happen in our lifetimes, but we have a chance to make it happen by creating awareness and exposure, and I want a website that encourages people to do this. I have always wanted to do this, been planning on doing this, but have yet to do it until now. I feel it is the right time for it, and even though I have no idea how I will get this all done and no idea how long this will take, but I have decided to do it now.... Eventually our website will have essay contests/videos of sufferers finding different ways to create awareness. We will hopefully have funding to help.

I received an email/comment from someone who I know call my friend, Ashley, who saw my ESPN video and has motivated her and she will be helping me on this quest. I urge any EM sufferer who wants to help get involved! After my ESPN video, and even now, I get emails and comments from sufferers who want help now and like me, are tired of waiting for a cure. I have found that waiting for something that may never happen is depressing, but once you take a step to help it happen, it makes a world of difference. So, I hope that you continue to support TEA in their quest for a cure, and also join us in our fight for our disorder. At Burningbright.org, we are figting for a right to exist. We are tired of being invisible, we have a right to feel our pain, and still live and do amazing things with EM. We don't want to stay in wheelchairs and indoors no longer. We are tired of being dismissed by doctors and crazy, drug addicts, or inable to be helped. We will find different ways of being heard. We are incredibly strong survivors of a debiliating disorder.

Someone once told me that one person can't make a difference, so why bother. I am here to prove that one person can make a difference!! And one person on a website, who is joined by another, and another, and another, and multiplied to show, that yes 1 person can make a difference, and yes, collectively, we can change the world. So if you want to help make this world a better place for EM sufferers, then visit http://www.burningbright.org/ and stand up with us. It is called the Butterfly effect.

"Something as small as the flutter of a butterfly's wings, can ultimately cause a typhoon halfway around the world."

IRONMAN FLORIDA RACE REPORT

2009-11-17T14:15:00.009-05:00

"They told me it was impossible.... I told them it was inevitable!"

I arrived in Panama CIty on Wednesday. Thoughts of last years failed Kentucky Ironman event came into my mind. In 2008, I attempted Kentucky and passed out on the run at mile 6. I have a pain disorder that causes burning pain all over and heat makes it worse. And of course it was really hot that year. On the bike I ended up getting heat stroke and severe cramps where I couldnt ride my bike up hills and ended up biking in 8 hours!!! :( then spent 45 minutes in the medical tent before being cleared to attempt to run. I walked for about 6 miles before I hallucinating a big tall bunny rabbit cursing at me, and then passed out. :( I was devasted!!! and now those fears were coming back! Kept telling myself I trained better and was more prepared, but you just dont know. Ever since I was first diagnosed with EM and laid in bed for a year because of the pain, I decided I wanted to be an Ironman. It took me almost 4.5 years to even be able to run and I have to bike and run in sandals because of the pain. But I was determined to risk it all and try again. :)

went to check in which was insane! Friday did the normal bike/transition stuff and tried to go to bed early.

WOke up at 3 am completely bright eyed and bushy tailed. Actually got out of bed at 4:15ish to eat my PB & Honey sandwhich and wake up. Advantage at staying at Boardwalk hotel in the not so nice section is that it is right outside my door!! Went down at 5 am, got bodymarked and dropped off food/liquid and stuff, and then went back upstairs!! :) awesome.

Went down to the beach at around 630 and hopped in the water and then headed over to the start section. Saw Kristin there and we were both looking for our guys. Found mine and decided to be as far right as I could but close to the front. Was getting really scared looking at all of these people. I see crazy people!!!! :)

SWIM:

When the gun went off we all tried to run in and I remember thinking bring on the UFC swim! I thought that being so far right I wouldn't get battered as much, but I still did! I didn't mind the "normal" hits/kicks and slaps, but the purposeful grabs pissed me off. One person actually grabbed my feet to try and pull me back, but that brought out my inner breastroker and managed to whip my frogs legs and really kick them. They didnt try again. Somehow, after the first buoy I ended up directly by the buoys and not far right!? ugh... I ended up in a group of mainly red capped men and only a couple women. One guy actually managed to grap my rubber boob...? still dont know how he managed that/? and I swear someone bit my foot.. The first lap was stupid! By the time i got to the turnaround my watch said 32 minutes... and i needed a break from the constant pounding so I walked the sand bar bit... should have ran/swam it or something because it took me over 5 minutes to start swimming again..haha! I ended up passing a girl with a hot pink cap and thought that I wanted one like that!!! didnt realize right away that it was a pro woman. The second lap was actually worse?!? i was still surrounded and getting pounded. I got elbowed pretty bad in the quad that hurt for half of the lap! At this point it was kind of funny... a UFC fight with actual headbutts, elbows, and knees... got hit with everything possible! :) i think someone actually picked up the sting ray and hit me with it. :) Boy I was glad to get out of that swim or "fight". I was disappointed with the 1:09, but considering... it was the best I could do at the time. And I didn't have that choking/panic attack like normal and I didnt throw up 7 times like at R.I.! :)

thoughts:

1:09.38

-dunno? Join a club and get back to my college swim and turbo blast around the course? Couldnt have gone farther right, so I guess I would start in the same place, but just train more swimming...

-and remember its all in the elbows...they are way worse than fists/hands...

-and maybe get a black eye so I could look purty in my swim picture instead of just dazed...ok not really but my swim pic was bad!

Transition:

walked around like a deer in headlights.. didnt know which way was up/down/backwards. Was happy I didnt do another lap out of habit. Wetsuit stripper had to tell me to sit down because he couldnt pull it off with me standing! haha :) no, really? Saw Dan, gave him a super salty smooch, had to grab my own bag and ran into the change tent. Threw on my arm warmers which I wished I didnt, put on my bike jersey, and blew my salty nose, and managed to go out the right side of the tent. Still dazed, and grabbed Poodle and got ready to ride. Yay bike yay! now that horrible beating is over it couldnt get much worse, could it? but that is the failure of imagination. :)

Thoughts:

9:13

-do some brain training and practice getting beaten up and walk around !?
-cant believe it took me 9 minutes? hmmmmmmm.. must be those darn arm warmers!! they are evil when wet.

BIKE:

Think everyone and their great grandma passed me in a peleton!! !no really... trying to figure out where it went wrong, but decided it was the whole bike!!! lots of little things that just multiplied. My time wasnt as bad as it could of been, but i felt HORRIBLE.

I started out at 22 mph and kept holding myself back...back to 20-21 thought that this was going to be fun if I can hold this!!! ?! I know I can hold at least 20 mph because of my long bikes, so I thought I was doing great@! What do they say: If you feel good in an Ultra... dont worry, you'll get over it. :) I noticed that a few of my gels that i taped on had fallen off already and some of my nutrition out of my "shopping basket" aka bento box was gone as well@?? dont know what happened, but must have been in the hand off and maybe it was torn off. HUMPF. Not a good sign. I know that with my hypoglycemia that I can really get messed up and bonk like crazy with little changes. And I noticed my quads were really cramped up right from the get go. Don't know why?? But after 5 miles it was clear that this wasnt going to be as fun as I thought. Little did I know that my legs were going to get worse and I was going to do a world record bonk. I was constantly getting passed by people, was surprised at how many were drafting? It wasnt that hard to avoid it. I think people just used it as an excuse to go faster? I saw the official nail a few people in the first 20 miles or so. At least some got busted, but it seemed random. I just told myself that it was Karma and if they can cheat and live with themselves so be it. When we passed the bridge and turned right it was clear I was in trouble. There was a strong headwind and it seemed to just go uphill the whole way?!! not a large hill but with that wind it made it pretty ridiculous. My legs were still cramped and I tried the thermalytes which normally help but didnt. The wind was getting on my nervevs!! I knew we didnt turn until around mile 50 and I was annoyed. Wind wind WIND... FInally I hit Special needs so I could get some more nutrition that i was used to, and IT WAS RUINED. The only thing still good was my cold coke wrapped up with ice and foil... COKE LOVE IT!!!! but everything else was melted and mushed together and couldnt eat it. THe potato chips I packed were gone and I really wanted the salt!! OH crap I thought. Guess I will have to do with the gels and the stuff at the aid station, but I do so much better with real food. Gels affect my sugar too much when eaten alone... I saw Dan at mile 60 and it brightened my spirit...even though I knew I was way off target. So this is when bonkarama hit. When we turned on that camp road and the bump bump bump bumpy road and back into wind, I was crying and screaming at the wind like it would help. THe bananas, gels and power bars werent helping. I tried to tell myself to suck it up, but until I get my blood sugar back up, pep talks wouldnt help. AM I dead yet? can you just kill me ? I am never doing an Ironman again!!! haha

thump thump, bump bump.... my bike sounded like it was falling apart. :) I just wanted to get onto that smooooooooooooooooooth road that they just repaved. WHen I finally hit that, I was happy because I knew once I turned back onto that hill it was only 12 milesish left!!

So i sucked it up and just biked the best I could with my screaming legs and unwilling body and managed to get up that hill/bridge thingy and tried anything I could to keep busy and not get upset. When we turned back onto the beach road into that wind, I actually started laughing... of course.. wouldnt be an Ironman without that extra wind. At least my spirits were up? Just couldnt wait to get off the bike.. kept asking myself are we there yet? just to bug myself. finally reached the transition area!!! woohoo!! and it hit me that my bike wasnt as bad as it could have been because I have 9 hours to do the marathon. That thought was awesome because I am a slow shuffler, but even I can finish if i can keep moving!!! maybe just maybe??????????????

Thoughts:

6:37

-everything? choose better nutrition that wont mush/melt, and put all food in bento box or pockets so they dont fall out.
-Get a leg transplant... :) my boyfriend has super biking legs.
-train in a wind tunnel or invent warp speed on my bike
-seriously, more bike training? practice with wind? somehow learn to control hypoglycemia in race conditions..try to simulate nerves/jitters and the effects of food needs ? practice makes perfect?

Transition:

15:24

changed into my run kit and had to explain that those sandals are my running shoes! :) then went up to my room at the Boardwalk hotel, did some horizontal jogging to get warmed up for real jogging and managed a little nappy too.... ;) ok not really, but don't know what I did with the 15 minutes? everything was moving snail speed anyways, guess my mind was in super slow motion as well.

Running:

6:36

started out walking around the corver, seeing Dan and talking to him for probably about 15 min. Guess i needed even more rest??? felt stiff as a board but hopefull. Tried running and it wasnt too bad?? had a stomach ache/cramp that didnt go away until mile 3, so I ran for a bit, walked for a bit. When I ran I was going around 11 min mile pace which is about normal for a brick. Walked at every aid station and drank coke...love coke!! the aid stations were fun and loved the guys in bikinis.. Saw Kristin at around mile 5...she looked strong! yay Kristin. Hit the park and ran around it yay... only 3 more to go. Saw the motivational section and my message was "suck it up princess" nice... thanks dan. :P

it was starting to get dark at mile 10 and I saw some people with glow thingys but I never saw any to get? I guess they have then at mile 13? i had slowed down a little bit at around 12 min mile pace... wasnt happy about it but there was nothing I could do. Then i saw chicken broth... hmmmmmmmm. Tried it, not the biggest fan but it was salty. Always followed it up with coke though. Bad aftertaste! hit almost halfway and saw Dan... boy that felt good to see him... Im halfway through my marathon!! and i still have lots of time. :) He said there were glow thingys right around the corner.. hit the turnaround and picked up special needs. Looked around and there were no more glow sticks!! i saw kids running around with handfuls of them... wtf/? one approached me and i said hey were did you get those? and he looked at me and said I dont know and I asked if I could have one and he said yes.. Boy did I feel bad taking "candy" from a kid. Wont make that mistake again! will get my own. made it to the park...my pace fell even further. THe park sucked! WIth my disorder I can't see in the dark and my eyes cant adjust to bright lights in the dark and I just cant see! So this part was very scary and thoughts of stepping in a big pot hole and falling and breaking my leg or something came to mind. I felt so alone!!! just one foot in front of the other... i FINALLY made it out the other side!! 5 more miles..kept shuffling/walking. 4 more miles... can i make it??? right around 3 miles left I think? I saw a guy right on the side of the road and he was in a bikini/thong and posing like a male model. I blinked and I swear his eyes were following me, and I asked him "aren't you cold in that" ?? and then i realized, that it was a cardboard cut out!!! haha... a few people behind me laughed as well... at least i can make someone laugh with my blonde moments. :)
then i came up on two miles left!!!!! i LOVE THAT SIGN! MILE 24. 2 more long miles, but I can make it!! I wanted to come in under 15 hours and if i hold pace ill make it! I can't believe this??? Im going to do this!!! the thoughts of me laying in that bed, wishing I was dead and almost killing myself flashed in front of me. Struggling for years just to walk, and bike and just even be able to run.. seeing that Ironman Kona program on tv that saved my life. And now Im going to be an IRONMAN>.. 1 mile left!!!! and then I heard the music and the noise and saw the bright lights... i started running... so fast... not wanted to fail now, I ran so fast... faster than i ever have ( ok prob not) but it sure felt so fast. People were high fiving me, cheering me on.. and i turned that corner and saw the finishers chute.. and i ran over it screaming!!! Kate Conklin, yes you, get over here, you are an Ironman!!!! Mike Reiley finally saw me as an Ironman. I CANT BELIEVE IT!! i got my picture taken and stuffed my face with food and wanted to sit down so bad. I was in shock and wondering why I wasnt crying? everytime i imagined it in my head i cried, but there were no tears. Still in shock. Hugged and kissed Dan, poor guy, must have been ironsweaty. Got back to the hotel somehow and I couldnt sleep. I didnt cry the next day or the next, but when we made it to Disney World, the place dreams come true... i balled my eyes out. my dream came true!! i know its cheesy, but it did!! :)

I am finally an Ironman!!!!

this is to all the doctors and people who told me I wouldnt walk again let alone do an Ironman. How do you like me now???? :)

Night of Ironman: N

ever doing another one
Day 1 after IM: No, not doing another one, but never say never
Day 2 after IM: I dunno, maybe?
Day 3 after IM: which one should I do?
Day 4 after IM: which one which one??
Day 5 after IM: cant wait to my next one!!! haha

"I firmly believe that any man's finest hour, the greatest fulfillment of all that he holds dear, is that moment when he has worked his heart out in a good cause and lies exhausted on the field of battle -- victorious."

IRONMAN FLORIDA TRACKING@!!!!

2009-11-03T12:27:00.002-05:00

I can't believe it is here again!! Here is a link to track me on Saturday:

http://ironman.com/events/ironman/florida/?show=tracker&y=2009

the actual tracking of 2009 won't be available until raceday. My race number/bib number is #2405!!!

Im so nervous and excited. Thoughts and fears from last years failed attempt keep coming up and I keep trying to convince myself that Im ready!! I trained hard and trained long and did everything I could to get ready...now its just going to come down to a little luck, hope, and determination.

Just so you know whether I am having a really good day or a horrible day these are my estimated times:

SWIM:
GOOD = 1:15 AND BELOW
JUST FINISH: 1:20+

BIKE:
GOOD = 6:30 AND UNDER
JUST FINISH 7:00+

RUN:
GOOD= 6:00 AND UNDER
JUST FINISH = 6:00 + ALL THE WAY TO TOTAL ALLOTED TIME OF 17 HOURS OR MIDNIGHT CUT OFF.

Please let me be brave in the attempt.

"Each day I live
I want to be
A day to give
The best of me
I'm only one
But not alone
My finest day
Is yet unknown

I broke my heart
Fought every gain
To taste the sweet
I face the pain
I rise and fall
Yet through it all
This much remains

I want one moment in time
When I'm more than I thought I could be
When all of my dreams are a heartbeat away
And the answers are all up to me
Give me one moment in time
When I'm racing with destiny
Then in that one moment of time
I will feel
I will feel eternity"

Haleakala Volcano "House of the Sun"

2009-10-01T17:01:00.014-04:00

"You have not tasted success until you have succeeded at something you truly thought not possible."

Stretching across east Maui, Haleakala National Park is home to Haleakala Crater, an active, but not currently erupting volcano, and Maui's highest peak. Rising over 10,000 feet above sea level, Haleakala's graceful slopes can be seen from just about any point on the island. Haleakala means "House of the sun" in Hawaiian, and legend has it that the demigod Maui lassoed the sun itself from its summit to slow the sun's journey across the skies. There are plenty of bike tours DOWN THE VOLCANO, but didnt see one for going up!.> why not? :)

What can I say? I can't believe I actually did it!!??? If I woke up tomorrow with my head on backwards... I wouldn't be more surprised than I am now. It's not because I'm a negative person, quite opposite... It is because of past experience of climbing hills. Just ask Dan, I can barely ride up small hills without extreme pain, whining and shortness of breathe... so the real question is, if I am horrible on hills, WHY DID I EVEN ATTEMPT TO BIKE UP a 10,000 foot volcano????????????

thats me at the start..... and i was very nervous and hoped that my little grasshopper legs would be good today. don'task me why I wanted to do it in the first place. I get these wild ideas and don't know how to turn them off!! haha... anyhoo, I woke up with extreme jitters.... i look over the map and I count all the switchbacks. I think that if I could make it to the Park Headquarters at 7000 feet that would be awesome!! The summit is 10,000 feet and the likelihood of me making it was slim to none. Dan said if I biked to the top a pig would fly. I shared that belief!!!! The only "mountain" ive climbed on my bike is Bear Mountain and thats only 6 miles up and 1,284 ft tall.... haha. I just looked up that elevation and I remember that I used to think that was hard to climb... doesnt that say enough of my climbing abilities??

I start climbing on my bike and the weather was cool, and cloudy, seemed perfect that I woudn't have to battle heat. The first 10 minutes were hard!! Normally it takes me 30 minutes to get warm and I never start on a hill!! It felt like my heart was going to jump out of my chest. So I stopped for 1 minute to let it go back down. Decided that was my new plan.... every few switchbacks, I would take a breather. I told Dan and his dad who were in the van that I wanted to do at least 1 hour if not 2 so I couldn't stop less than that. After 40 minutes I started to get in a groove. I was at 4000 feet and they had open cow fields and these cows just started to cross the road in front of me and I giggled....they were so cute! I thought that maybe this was cow heaven where they can roam in the clouds. Then I thought if I had to pee they would see the 'moon' and jump over me.. ;) I called and they were eating breakfast at this lodge and told them to buy me some coke because I was having fun... FUN????!!??? I was actually having fun. I never have fun on hills. Everytime I passed a new elevation sign, it made me happy. I reached 5000 feet and groaned. I only have 2 more thousand to get to the park entrance, and than 5k to the summit. So, I just jammed to my ipod and stopped thinking about how much farther, and focused on how far I've gone. Just make it to the next 1000. I passed more cows, and started to pass through the clouds and that was so cool!! I was biking above clouds and it was an amazing feeling. One funny bit was when all these speeding bikers who come flying down the volcano, some look like they are having fun, and others, look scared to death! I saw all these adds for biking down the volcano, but none for going up??? WHY NOT?????? i cant be the only daft one who wants to climb. I decided mine was more fun, or maybe it was the change in altitude. ? It was a strange thing for me to admit that I would rather bike UP instead of down... weird!!! But i didnt want to squeeze the brakes all the way down, especially on a bike that I dont know.

I kept going up all the switchbacks that seem to go on forever, hoping that i would get a little downhill or flat to get some relief, but there were all UPS. Dan says to me all the time, "it is all downhill..................... except for the uphills".. yeah...right. :)

I passed the sign for 6500 feet!! I was so close to the entrance...i can make it!! so i keep going and going and going.... The scenery was changing again and the pine trees and luckily i had my ipod because i would have sung christmas songs...blech!

So I see the sign and Dan is there with his camera.. I made it to 7,000!! Higher than I have been on my bike... but it doesnt seem enough? why? oh why? Im tired!!!! Then 1 dude was coming down on his bike. He biked to the top and he was on his way down. He says the rest of the way is the worst!! And then he said something that stuck in my head... "You did good getting this far" .... excuse me?? For some reason it seemed like he didnt think i could make it and i should just stop!!!! Screw that, I can go a little more. I decided i was going to try for 8000 feet. What is the worst that could happen?? Dan gives me the ice cold coke..... COKE... mmmmmmmmm. so i continue on... and the coke gave me a huge surge!! or maybe it was the lack of oxygen gettin to me or the fact that i am going further than i thought i would??

The only problem is IT WAS GETTING REALLY HARD. Was climbing more elevation in smaller amount of switchbacks... It seemed like it was getting really steep and my legs were getting jelloie. I wondered if i could make it any further? Then I slowly creep up on 8000 feet!! whew! i made it! it was like XMAS where you keep getting presents except you have to work to get. All this time I thought it was like biking to heaven, but was starting to think it was hell with a pretty package until you get to the volcano bit which is hell in disguise. I was beginning to think that maybe i did die or was in a coma..how else can you explain me geting to 8000 feet??? Dan told me that I only had 1 switchback before 9000 feet, and it was way longer!!! It seemed to go on forever and i climbed 1000 feet in this supposed switchback. Stupid switchback...(*&Q@(#!@@!!@@@! now that is the climbing girl that i know!! grumpy/

then I reach 9000...woohoo!! Im starting to really feel lighthead, uncoordinated, and find it hard to breathe. I hallucinated to and thought i saw a cow on the ledge jumping off to commit suicide but it was just a big brown rock or a poop or something..haha. i felt like i was drunk trying to bike in a straight line.

Then i passed the lookout at 9300 and kept going to 9700 feet where the visitor center #2 is...why its not at the summit I dont know. That means I only have 300 huge feet to the summit! could i make it? i feel like i could collapse and die from emphasema. I just cant breathe and it makes me really happy i never smoked.

the last 300 hundred feet was the hardest! I couldn't breathe and my legs just didnt want to move. My body was screaming STOP and my mind was saying never!

Puff puff, wheeze wheeze,and i huff and Ipuff and i couldnt blow any house down. Where is that flying pig??????????? BECAUSE I JUST SUMMITTED!!! I JUST BIKED UP 10,000 FEET!!!!!////?????????????? Holy cow!! yay!!!!!!!!!! The sign that says to walk slowly at this elevation cracks me up!!!!! surprised i didnt see a pig.. felt high as a kite!

I could just roll around on the crater laughing if i had the energy. Im shaking, and shaking and can barely stand up... ha ha ha. That is the coolest thing i have done on my bike.... possibly the coolest thing i have ever done... that and run the marathon with EM. It took me 4 hours to bike to the top. 4 hours of pure torturous climbing. Thought it would never end.... but the most surprising part... was that I enjoyed it!! ???especially the finishing bit...haha. Today, during Kate versus big hill....... KATE WON. Haleakala volcano, the house of the sun, will always have a special place in my heart. Kind of fitting that its the 'house of the sun'.

Maybe, just maybe, the Ironman will be possible now? That sometimes, when the odds are completely against you, and no one, not even yourself, fully believe that its possible, and then a miracle happens. When all your hard work and hopes and determination seem to come together. Maybe? all my training and pain, and horrible bike rides and painful runs and heartache of last years IM attempt will make it possible? i know its the journey not the end that makes it worth it, and I have enjoyed it, most of it at least. but it still would be nice to step across that finish line. And maybe that is why i did this crazy bike the volcano thing, to have some confidence to bring to the Ironman? who knows, but im glad i did!!! in 35 days, I will try the IM again... can't wait!

"Once you have tasted flight, you will forever walk the earth with your eyes turned skyward, for there you have been, and there you will always long to return."

Hawaii fun

2009-09-29T20:05:00.007-04:00

"Our truest life is when we are in dreams awake"

It was always a dream of mine to go to Hawaii. And now it came true! It really it a magical place and every island was differen and special in its own way.

We started off with our nice extremely long flight to Oahu and with the 6 hour time change... my feet were killing me! I was not a happy camper because of the pain. As we drove through Honolulu I was not impressed...not what I imagined Hawaii to be?? Then we arrived at Waikiki Beach and there were so many fancy stores that I thought we were in NY still with palm trees and a beach. It is just as crowded with tourists as NYC. ? The next day we spent on the beach, and I enjoyed open water swimming and drinking fufu drinks with pineapple and cherries. On Sunday I went running to Diamondhead mountain/crater, and it was so beautiful! I loved the fact that it was right by the shore and there were lots of people out running. I decided if I were to live on this island, this is where I would be.

After a few days, we were on our way to Kauai. This island is what I imagined Hawaii to be. It was lush and beautiful and not commercialized as Oahu. We stayed at the Sheraton and the beach was beautiful. The first time I went swimming, the swells were huge, and I got caught in this riptide that was pulling me out to sea or into the rocks. I will admit, I was scared, but just did I what Iwas supposed to and not try to fight the current, and somehow managed back in. The next day I went swimming and it was more gentle and I saw Tommie the turtle. I swam with him for a bit and decided I could get used to it. I rented the first bike and it was a Raleigh road bike, nothing special and named it smurf. I woke up early and bike 20 miles to the start of the Waimea Canyon. The Canyon was 10 miles up and close to 4000 feet, and then continued on another 8 miles to the very top. Biking in Kauai was interesting and not exactly the safest thing. I was surprised at how many wild roosters there were? thought they were going to poke out my eyeballs. I make it to the bottom of the canyon and I was already hot... this was not going to be fun climbing this thing! Luckily Dan and his dad had the van and could pick me up if needed. Once you get to the canyon, its beautiful. It is the grand canyon of Hawaii. They had this coconut stand and had dried sweet coconut and coconut taffy candy. Dan's dad said they looked like maggots and slugs, but they tasted really good!
The next day we had a crazy adventure. First, Dan's dad and I went up in the sky in a microflight plane. A cross between hang gliding and engine flying. Dan's dad was petrified because of the extreme wind, but I thought it was great fun!

After flying, we all went on this water rafting trip that we had to hold on or be tossed out of the boat! It was crazy. It would have been more fun if I hadnt just had appendix surgery and it was starting to ache. We did see some wild dolphins!! they were so cute!!!

Lets just say after 5 hours of being bouced around on a raft and rope burns on my hands, I was ready to be off. Been on all sorts of boats, and that was insane!

The next day we fly to Kona. I was really excited to go there because of the volcano, the devastation from lava (similar to my life and EM)...haha, and of course where the Ironman World Championship is. When we were driving to the hotel, we drove on the queen K highway (bike route) and there were black billy goats!!!!!! I LOVE THEM...they were so cute! BILLY came out to see me on my bike rides. Ialso got a kick out of the donkey crossing sign, but never saw a donkey. :(

they had a nice calm beach there and places to snorkel. I did lots of swim training there and could see fish and coral.

I rented bike #2 which was a cannondale road bike that was too big for me and had a lay back seat which means the front bit pointed up, and it was very owie!!!!!!But I road south on the queen k for 3 hours the first day. The second day Iwent 60 miles up north and ended up going over this mountain range and it was hard!!!! but maybe im getting better at hills?????? I called this bike, Mr Ed. I got a kick out of biking by all the white rock messages in the lava.

i also did some running and there was this black lava path to run/walk on. It was very hot and desolate during the rides and runs though.

At the marriot in kona they had this amazing pool called the infinity pool and it made you feel like you could just swim off the edge of the world.

I wish I had a pool like this i could swim in every day!!!

We drove to the Ironman swim start and finish just so I could see it. Maybe some day I will race it. I just have a feeling I will someday. I will be back!!

we went on this night scuba dive to see Manta Rays!!! It was scary to me to descend in the dark...what if you get lost, or run out of air and cant find your buddy, what if a shark gets you? when you get to the bottom of the ocean with your torch and the manta rays swimming above you, its an incredible experience that i will never forget. I wish i could have had some pictures but you would need an expensive camera to get one that was good. The boat ride was nice too because we saw the sunset.

we drove up the active volcano park and saw the black sand beach which was weird. The strangest bit was the closer i got to the volcano, the hotter my feet burned!!!?? It was very sharp and must have a connection with the goddess Pele and the burning lava. Guess i have my own inner volcano.
It was awesome to see the lava and wished we could have seen the actual lava, but it was a long walk and it was pouring and my feet were killing me!!!

said our goodbyes to kona and left for our last island.... Maui

Maui was beautiful as well.

The ocean was amazing and so clear. Tommie must have swam there, because he was there!!! :) It was like swimming in an aquarium.

I biked up North over these insane cliffs in the rain and it was incredibly slippery . I can't believe I am doing all this climbing on my bike?????????? see later post about Haleakala Volcano bike ride. :) I love it!

I had so much fun in hawaii, and so many more pictures but would take forever to upload... :) didnt want to go home!!!!!!!!!!!!!!!!!!!!!!!!!! I would love to go back someday, and if you ever have a chance to go, you should do it.

"if you aren't living on the edge, you are taking up too much room"

Easy breezy, lemon squeezy

2009-09-07T18:59:00.003-04:00

"Act as if it were impossible to fail and it will be"

On Saturday, Dan and I biked 100 miles to Bear Mountain and back. It has been a year since we have done it, and I did much better than last year!! The further you get out of Manhattan, the hillier it seems to get... especially Bear Mountain... haha but it is called a mountain for a reason!!! dan is a much better hill climber than me, and sometimes it gets annoying when I get to the top, and I'm out of breath, and he just gives me a smile... arg! or when we are climbing and I yell at him "where is the freaking top?????!@@#!! this is stupid, it goes on forever...@#$$^^&#@@!!!!! and he says that we are almost there, and I mumble @@@!#$^^&&^&#$!!!!!!**&!@! you suck. :) I feel bad that I am so slow compared to him, but its not from lack of trying. I also feel bad for cursing at him sometimes that Im not even sure he hears, but he can climb hills like its a fricken walk in the park!!! its so not fair! So i told him after the next big hill to stop and take a picture of me.

Here I come, smiling for some reason?? Maybe im smiling at how ridiculous i must seem to him... all my cursing and whining... and yet, I dragged him on this ride in the first place!!???? I must be insane.

Usually at least once and up to 10 times, I wonder why the frick i am doing this... and why I dont just stop and take up knitting or something...

then I think of the 1 reason why I am....

and the fact that I hate knitting and couldnt do it anyways because of manual dexterity problems, but nevermind...

so I say to myself, again, to suck it up princess!

there I am passing by sticking my tongue out as i pass... the one thing I am good at on a hill... haha

do these shorts make my butt look fast????

there I go where he can see my ass in front of him for once on a climb.. :)

do they have an Ironman race that is all downhill???? I guess Florida has the flattest course.... kick ass!! so why am I on hills??????????? why/???/ haha.. I hate riding my bike!!!!! sometimes.. on a hill...

Poor Poodle. She is getting some new tires when I get back from Hawaii...did I mention Hawaii??? Going to hawaii on Friday!!

I think the French Poodle likes climbing hills like I do ....she is hand made in France, and curses at me in french I dont wanna shift gears so my chain will fall off or make an annoying clunking/clicking noise that I have translated to: i hate you woman!! why are you riding me???

guess it is love all around!

I think only someone with EM could truly understand what it feels like.... they say that climbing hills is mainly mental... but even if I truly believed I was a "lance armstrong" type climer, I would still suck!! I can't seem to get enough air, and sometimes you can hear the wheezing in my lungs, and I can physically feel the constriction in my lungs and my legs aren't getting any air and I just want to curse and scream at the bloody hill.... but like always, my scream gets lost in a paper cup, and Dan tells me to suck it up princess... : ) it sounds weird for him to tell me that for some reason.... think the version in my head doesnt have a British accent!! haha... :)

he doesnt even look like he broke a sweat!!???? haha/..... but this amazing climbing machine has climbed the fricking French Alps... ... much different than good ole Nebraska!/? the only mountain in NE is the brownie ice cream sundae mountain that I devoured with immense pleasure for once.

but I did it! and minus a few cursing sessions, I didnt bonk or cry or want to ride my bike off the road.

The scenery there is just beautiful, there are lakes around the mountain, and we ride by the water several times. We stopped briefly at the lake where I ate a PB & honey sandwich and some potato chips for the salt. We are definetely not in Nebraska anymore ToTo. Sometimes, I wish they had a path like they have in Omaha, where you can ride for 100 miles on a flat, no car, bike path that is almost empty and nothing like the west side path where you almost crash into some idiot. And no one seems to notice that there are other people on this path, but that is a whole other story.

mmmmmmmmmmm COKE! seriously, nothing better that a nice cold coke for a pick me up at mile 75. :) i should be an ad for them! :)

But, I guess this will help me? Can an EM girl get better at climbing? Can my determination beat genetics?? I have at least 2 more century rides left and i am curious to see if I can improve. SO stay tuned for:

KATE VS. HILLS round 2 and 3 :)

And maybe this struggle will help me in the IM where Im sure I am going to struggle. So tonight, maybe I will lay in bed, imagining I have the polka dot jersey because I am an incredible climber or that I won a billion dollars and changed my legs to super climbing things and see if it helps?? One can only hope..... oh and for the race i need to learn how to pee in my shorts on the bike as well.. maybe when Im passing Dan on a downhill?????? haha! Just kidding... or am i?

"You can't really be strong until you see a funny side to things."

Might as well be playing Tiddly-Winks

2009-08-26T17:26:00.003-04:00

"Don't be stupid, you can't do that."
"Yes I can, anything is possible."
"We told you that you couldn't do it."
"At least I tried, you bastards."

Had a surprising last 2 days of training. ? Yesterday, I rode for 4 hours 45 minutes, with a 45 minute brick immediately following. The bike started out painful, just plotted along and an hour into the ride, I GOT A FLAT!!! are you kidding me? thats about right. Figures, I am by myself trying to ride long. Ok Princess, lets fix this b*tch. So i pull out the whatchamacallits and the widgets and gadget thingymabobbys and try. I got the wheel off ok, and i couldnt get the tire off!!!! I try and I try, and its not that Im a wimp, I just don't have the manual dexterity in my hands. When you have had extreme pain in your hands for many years, your hands dont work quite right. I can't open jars, and I cant seem to take the tire off the rim!! several cyclists ask the polite, are you ok as they zip on by. I am determined to do this myself !!!! arg !! Just another thing to remind me I have EM> But i need to do this if it happens in my race again. Last time it took me over 20 minutes to fix it. So finally, ridiculously finally, I got it off! I put the new tube in and put the tire back on , and used my CO2 cartridge because I forgot my pump.. haha I put the wheel back on the bike, got on my bike, went about 10 feet and almost crashed into a truck because my wheel locked up. Got off the bike, and my brake was snagged in my tire and the tire looked like it was going to burst with the bulging tube. Ah f)Q*&$0!@#@!%@#Y^$^ ... so, I have to do it ALL OVER AGAIN. .. still with no pump. Luckily my guardian angel for the day, stops and helps me align the stubborn tube and he has a pump!! He finishes it for me and heads back on his way.. what a great guy! he actually gave me an extra CO2 cartridge and some advice to carry a pump...! hope he has some great karma coming his way. Im still slightly embarrassed with my flat changing ability... and get back on my merry way and go into a small town to their bike shop and get a new tube and stuff cause with my luck, ill get another flat. The funny thing is, I feel great now.. new confidence and new excitement for my ride... then as i was riding along, a manure truck drove by, and a pile of sh*t flew off the truck and hit me smack in the face... @*&@%#*&@*&@$ it was so gross I had to throw up a little. Made me feel I was back in Nebraska. Kept going and laughing.. what a bike this has turned out to be! and the GWB south was closed, so to get back to Manhattan, you have to carry your bike up and down a gazillion stairs... with jello legs and cleats!!!!!!!! Finished my 4:45 somehow..completely exhausted and wondering how im going to run. So I put on my sandals, grabbed a bite of chocolate, and some salty baked lays.... yum and went running. Trotted along and I actually had a great run???? huh//? kept expecting a pig to fly by.... does a guy walking his pot belly pig count?/ Stopped myself at 45 minutes which was 15 minutes longer than my plan... and i remembered i was supposed to run 2:20 the next day. Got back and stuffed my face... was soooooooooooooooooooooooo hungry.

Today I ran my 2:20. It was long and slow and felt tired from the day before. Think it must be manure week because on the path were 10 cops on horses poooooing all over the bike/run path!! so once again had to smell it. Made me slightly irritated. If the cops make people curb and clean up after their dogs, they should have to curb/clean after their horse!!!!!! The last hour was better than the first though, but I was glad to stroll home. Impressed with myself, and totally exhausted, laid down for a nice lng nap. One week closer to my Ironman, and another week where Kate battled EM.....and this week: KATE WON ! :)

"To be a cyclist is to be a student of pain....at cycling's core lies pain, hard and bitter as the pit inside a juicy peach. It doesn't matter if you're sprinting for an Olympic medal, a town sign, a trailhead, or the rest stop with the homemade brownies. If you never confront pain, you're missing the essence of the sport. Without pain, there's no adversity. Without adversity, no challenge. Without challenge, no improvement. No improvement, no sense of accomplishment and no deep-down joy. Might as well be playing Tiddly-Winks."

If all else fails... stop using all else!

2009-08-18T20:52:00.002-04:00

"There is no telling how many miles you will have to run while chasing a dream"

Well it has been 2 weeks since my surgery, and I'm finally able to do things. I still have pain, but it is an uncomfortable pain versus stabbing shooting pain, and I'm used to being uncomfortable because of EM. What I've learned since the surgery, is that I love my ab muscles... and I miss using them. You dont realize how much you use them until you cant....and i use mine all the time!

I went riding for 50 miles on Sunday, and I did pretty well considering... the hills felt like i was going to die, and the last 20 -30 minutes, I was spent and it was so hot out, my insides felt like they were cooking! and my back seized up because I cant use my abs so my back aches all the time. I finally know what my clients feel like when they come in with no abs and back pain..... DO ABS!!!! seriously.. ... seriously

I went running for 25 minutes yesterday with my stomach "brace" or "keep stuff in wrap" and today i ran/walked 45 minutes. I was quite surprised that my cardiovascular system was awesome and wanted to run for 2hours, but I forced myself to stop. I guess water running last week helped! Sometimes, I really am in awe of myself and my body. Somehow, I am like a chamileon, adapting to bad/painful situations and making them work for me?? Sometimes i still dont know how i even get up in the morning with EM, let alone run, bike and swim. If I think about it, 2 weeks ago, I almost died!!! 4-5hours away from death, with major surgery, and I am ready to train... frustrated that I cant go as fast, or as hard. My doctor put me in my place though... :) be lucky i am still here....haha .. awesome!

So here i stil am, doing the best I can everyday... slowly building back up. Some days, I get tired of having to start over... just when i seem to be doing good, something happens.. SOMETHING ALWAYS HAPPENS and knocks me down... and yet... another thing always happens; i get back up. But that is life I guess. And by some miracle, if I can finish the Ironman...it will be worth it!!!!

"If one dream should fall and break into a thousand pieces, never be afraid to pick one of those pieces up and begin again."

Stands with a Fist

2009-08-06T10:02:00.008-04:00

"I get knocked down...but i get up again... you're never going to keep me down"

I just got home from the hospital... I'm still in a lot of pain, I can't do anything myself. I need help standing, sitting, going to the bathroom, and showering. It all started Sunday night... Sunday was a horrible day. It rained hard all day long and I was really pissed that I couldnt go for my 90 mile bike ride... Hindsight, I was damn lucky to not have ridden with a ruptured appednix....In the afternoon, i started to feel what I thought was strong stomach cramps...maybe from food poisoning or stomach flu or something. It was very uncomfy, and I figured I would wake up in the middle of the night on the toilet. Sunday night though, i couldn't sleep very well... it was getting very uncomfortable... i couldn't find a happy place. It was a very long night. i kept pushing on my stomach, still thinking the food poisoning theory, in hopes to push out the gas/poo bacteria. normally that helps, but this was different. Monday morning, I tried to eat breakfast and drink some water, and in a few minutes, I threw up. I couldn't even keep down water! I knew this wasnt a good sign, but i didn't think anything different. As the day went on, the pain in my right abdomen was started to get really really strong. Soon, I couldn't stop crying from the pain. Dan came home around 4 to take me to the doctor. Hindsight, should have just went to the ER. Guess that is the problem with something new, you seem to always relate it to something you have had before. We get to the doctor, and im crying in pain, and the nurse took 1 look at me and put me in a cab to go straight to the ER.

We get to the er and after what seem to be forever, 30 min or so, they sent me straight to the back. Next thing I knew im in an exam room and they are ruling all the easy stuff out. They gave me a girlie exam, which was not fun because of the extreme pain in my abdomen, but everything there was fine. So they move me to another room and hook me up to IV and make me drink this nasty contrast drink to get ready for a cat scan. Another 2 hours pass of pure agony!!! The morphine I got didnt seem to do much, just pass through my system and at this time, Im in pure agony. It is funny, because most pain i dont feel because it is not stronger than EM pain, but this was sharp excruciating pain in one area and I'm beginning to think there is something really really wrong.

finally... FINALLY, they give me a cat scan, and you can always tell when you have something bad when they put things into motion fast...by the time i got back to the room, they had already put an order in for no food/drink etc....which is fine because i couldnt drink anyways.... then the surgeon comes down to tell me that I have an appendicitus and they are going to operate tonight. Great! so we wait and wait and wait and wait...and finally get moved upstairs where they start to prep me. Turns out that its not the simple snatch and grab appendix removal, it has perforated/ruptured and was leaking nasty toxins and bacteria into my abdominal region. I knew that was bad because that can make you septic and kill you. I was still in a ton of pain and finally instead of morphine that wasnt working they gave me dilaudid...which is stronger and AWESOME. Im not a normal fan of pain meds... I havent taken them since I first got diagnosed with EM. I didnt like the way they make me feel, but this stuff was awesome. FINALLY i felt a little relief and the best bit was the goofy happy feeling. Makes me wish I had this stuff when i was first diagnosed, because I was out of it completely. This stuff is dangerous though and highly addictive, and is similar to herion... when they first injected it in, I thought i was going to die because it made it very hard to breathe... but after that, an uncaring feeling set in... giggle. The surgeon told me that if I had waited another 4 - 5 hours, I could have been dead.

Finally at 330 am or so, the knock me out... I will admit I was actually scared. I didnt get scared until they told me it was perforated and started asking me if i had a will etc etc... I woke up screaming and crying hysterically... i woke up too early...and they were still trying to pull out the tube out of my mouth and the pain killers didnt start to work yet. The nurse was yelling to me to hold on, it will be better soon... but i was scared! i remember talking to the nurse while she kept giving me the happy shot. the surgeon said that it was worse than expected and the appendix was green and black and seeping nasty bacteria and toxins all over my body and they had to pull out the intestines and stuff to drain the nasty stuff... and the bad stuff had leaked and pooled in my cervix!!!! ewwwwwwwwwwwwwwwwwwwwwwwww... find out later I had a 40% chance of not surviving..but for me that is great odds because I have em and that is a 1 /gazillion chance of getting that! The surgeon said that my appendix had been inflamed for at least a week and wondered why I didnt feel it.... and he said I probably only felt it when it perforated and ruptured... guess that is the problem with EM... you dont feel the pain until it matches or exceeds em pain in 1 location. guess I am very lucky to have gone to the ER. So, if you ever feel like this.... GO TO THE ER!!!!!

they sent me to my room and my first roomate was horrible!!!!!!!!!! she kept screaming things as loud as she could like "NURSE NURSE NURSE NURSE NURSE, HELP HELP HELP, COME IN, COME IN, COME IN, WHERE ARE MY SHOES/ WHERE ARE MY SHOES?' i tried to be polite and tell her to push her call button, but she was determined..and she didnt need any help. She was yelling at me telling me i stole her shoes, and every nurse that went by. I couldnt sleep and she never stopped. felt bad for the nurse and for myself. FINALLY, the moved me out of that horrible room to a room in the corner with a view...it was quite nice. then they had another roomie come in who was very naughty....she had a 5 hour back surgery and like me they told her she cant drink or eat until they tell her, but she was begging for it from everyone,.... she didnt care if it made her throw up and pop her stitches... they eventually moved her out by the nurses station to watch her. Guess i was good enough to stay at the end.... peace and quite again... then that night the shit hit the fan again... for some reason I started screaming in pain because of the sharp stabbing in my gut...... i thought something was wrong again... I WAS SO HOT AND felt sure I was going to spontaneous combust. Poor dan! The night nurse didnt like me and kept trying to give me percocet which makes me violently puke and that didnt sound like fun... the surgeon came and explained that they really did a number on my insides to save me so this pain is to be expected and I can have dilaudid as much as I want... THANK GOD... they explained that since I was an athlete, my body just metablizes the morphine so quickly that it doesnt help very much.....so they hooked me up with dilaudid and finally felt relief again. I started to sing MELLOW YELLOW and was talking gibberish to Dan , but at least i seemed happy.... it hurt to laugh though so i kept telling Dan to not make me laugh... i woke up that morning groggy and wanting to go home...they bring me a nasty breakfast but the surgeon came and said i can go home around 2... yay.

i had to use this lung tool and breathe in and out to make sure i don't get pneumonia or something... dan said it was like a video game, i thought it was more like torture.

Dan came and I was booted out of the hospital....yay. Im still in a lot of pain and was a little scared at getting sent home because we dont have a mechanical bed. We went to duane reed pharmacy to get my prescription and finally..... i fart... ;) oh it felt good!!!! i havent been able to do it since monday morning and it was awesome! Sorry if that is too much info, but that is one of the side effects of an appendicitis. So dan was making fun of me and doing a walking fart dance and I was trying hard not to laugh.. FInally I get home and think now what? I cant do anything on my own... it hurts to sit down and dan has to lift me and help me... THIS SUCKS! I want to swim and bike and run and do yoga...i cant even lift my own legs!!! I had a little relapse that night but each day it has slowly gotten better... I am depressed now as i worry about my upcoming ironman. Will i still be able to do it/?//? when can i train? how come it still hurts so much> I am usually good with pain!! they must have really done a number on my gut for it to still hurt. but I am still hopefull, and very thankful that I am still here. I didn't come this far in life to die now by an appendicitis... i dont want my own body killing me!!! I hope that it will get better and I will train soon. I wonder why 6-7% of people have this and why it happened to me? Dont I have enough trouble in life? cant i catch a break? guess not! it could have been worse! and at least i have only 1 appendix... I HOPE! It just goes to show that nothing is ever promised to you...not even if you work hard, live a good life, and try to help others... nothing is ever promised... so if you read this, be thankful... you never know when your body will turn on you... you might get EM or your appendix might burst, but all you can do is try your best no matter what happens. And maybe, I will come back stronger after this..

so here I stand.... with a fist! refusing to give up...

I want to know if you can live with failure.......yours and mine....and still stand at the edge of the lake and shout to the silver of the full moon, "Yes."...

"Never Use your Face as a Brake"

2009-07-24T11:02:00.005-04:00

"Faster, faster, faster, until the thrill of speed overcomes the fear of death. "

On Wednesday, I crashed my bike on a sharp technical downhill and rammed into the barracade and then the concrete. It was really slippery and my brakes locked up and then it was too late. It happened so fast and my face hit the concrete and then rolled over slammed my shoulder and then whipped my head back and hit the back of my head hard on the concrete. I know I hit it hard because I saw white flash and then black. I was still clipped in to my bike and i lay there with gatorade dumping all over me. Probably was out for a couple seconds, but for a moment there I thought...this could be it. There is nothing worse than the realization that you are crashing... I had been having a great ride for 3 hours and was about to make it home to do a brick run. A couple of bikers helped me up and wanted to call for an ambulance. Apparently my face was really scary. I had blood gushing down my face and neck. Not only was i sweaty, but with EM, my wounds dont close if they are dilated and thus, blood down my face. I managed to fix my bike and had to ride it back 20 minutes or so. I had lots of horrified looks, and a kid was crying cause he saw all the blood. My left shoulder was dislocated and managed to pop it back in again... like usual.. and my knee was hit, but my face and head/neck was the worse!!!! I somehow managed to make it back home.

"Everybody's got a plan until they get hit." Mike tyson

The strangest thing is actually have my pain visible for people to see. They see my face and they cringe, say oh are you alright? or ouch... they actually see my pain????? The next day I woke up in a lot more pain. My neck is still hurting from whiplash, actually had a bad headache which i don't get anymore because normally head ache pain isnt greater than EM pain. My knee hurt, and my cheek throbbed! and you can see it!! i wish people could see EM pain, what would they do? maybe then people would realize how much pain we are in? I guess it would be scary to see people walking around daily on fire... ;) But it gets old being invisible. At one point my eye closed up and i could barely see out of it, my eye was completely bloodshot and i couldnt smile or chew food on the left side of my face... haha.

Today I got back on the horse and rode 75 miles with Dan. There were bits that I was absolutely petrified at which i've never been before. I was extra jumpy and nervous and of course it started RAINING ON ME which is deja vu. I hope I return to normal. I still cant turn my head... did I really mess up my neck? I know I hit the ground hard, but patience isn't my virture. I would have figured it would be better by now, but guess my body doesnt heal... Anyhoo, I finished my ride and am proud that I am biking more and hopefully I will be able to do the Ironman. :)

On a different note, my parents came to NY over the weekend and we did a little sightseeing! We went on a boat tour and on the intrepid ship... and out to eat where they were in shock at the prices for a simple meal and beer. :) But it was fun because I haven't had anybody come out to visit me and sightsee with me. My aunt came out with me before i lived here but we didnt have much time to sightsee because i was interviewing, but it was still fun. So it was a fun weekend and now I'm exhausted! it is hard work sightseeing all day! and then biking ... :) Will hopefully sleep well tonight! ;) Ride on...

"When your bow is broken and your last arrow spent, then shoot, shoot with your whole heart."

Beer, it's like Powerade only Better!!!

2009-07-19T17:47:00.002-04:00

"Sweat dries, blood clots, bones heal. Suck it up."

Alright, everyone... i'm done whinging.. haha.. I got some much needed sleep, a new Ironman training plan, and some new motivation and determination. Back to being me!!! :) I usually don't blog when I'm depressed, but after last race i decided to blog and show people how i feel. I'm not super girl every day! :P

So, I've got my new perspective. I'm going to ride my bike... and ride some more, and then still ride. I probably wont get any faster up a hill... dont think my EM genetics will let me. But, I can change my mental attitude towards a hill. Yes it hurts, hurts like bloody hell for me!!! But, this is Ironman, its meant to hurt. If it doesnt hurt, you are not doing it right! so, as I said to myself today as I rode my bike .... " SUCK IT UP PRINCESS!" :) The only good part of a hill... is the DOWNHILL... I'm really good on a downhill and i cant figure it out ? I fly by people that just passed me uphill, and on the flats im pretty good... Dan says I should train in the mountains...haha I did pretty good on my bike, I didn't bonk. I need practice getting used to the hill pain. I've also decided to blog more often. Just to show more of my training, not just races. I know i'm going to have hard days, but I should have a good day once and a while. Just do what I always do, take one day at a time. Hills , hills and more hills... Just had a killer meal of steak and hashbrowns at home... it tasted so good!!

Do you ever wonder why they have beer at the end of a race??? or during mile 20 of the marathon? I'm sorry, but on mile 20 of a marathon, I dont want to get sloshed and I dont like running through puddles of beer that smells like piss or men who maybe just pee at this time... but in sandals... ITS GROSS!!! But a beer at the end of the race can be nice...if it is cold! I think after my ironman Im going to get sloshed in celebration! that is if I finish. Probably wont take much since I'm such a lightweight. Will have to catch up to Dan who says while im racing he is just gonna lay out on the beach and drink beer!!!! :) 3 months + to go...

"On the mountains of truth you can never climb in vain: either you will reach a point higher up today, or you will be training your powers so that you will be able to climb higher tomorrow."

One can never consent to creep when one feels an impulse to soar.

2009-07-13T08:32:00.006-04:00

"My candle burns at both its ends; It will not last the night; But oh, my foes, and oh, my friends -- It gives a lovely light."

I somehow managed to finish the Half Ironman race. I almost quit so many times i lost count. It seems nothing is ever easy for me and nothing is ever done without having to give it my all. I am a lot slower than i was last year. In both the marathon and half ironman i was 1 hour slower! I have more injuries, sciatic nerve pain, etc etc and it makes me think my body is not cut out for this...and my mind is tired of having to bear all this pain. And yet here I am, standing before you, ready to take on the Full Ironman once again.

The race started like any other race. Wake up super early in the morning, go to the start, the nerves kick in... doubts... will I be strong today? will I finish? Will I make it? Dan and I arrive at the start and the announcer chirps in that there is a delay because of the strong wind and current have moved all the buoys and they need time to arrange them back in line for the race....hmmmmmmmmm... maybe that should have been an omen?????? Not to mention ITS BLOODY freezing outside and the wind is whipping and the water looks dark and menacing. Then the announcer says that the race director and referree says that the water condition is so bad that if you prefer you can opt out of the swim and just do a duathlon.... ??????? That is when you know the water conditions must be bad if they are ok with you skipping the swim ... NOW THAT SHOULD HAVE BEEN A BIGGER OMEN FOR ME... but im stubborn. I refuse to quit. I thought to myself I couldnt live with myself if I skip the swim.

The day before I went paddling in the water, and it was freezing!!!!!!!!!!! now add super wind and super swells and total constriction of my lungs together and what do you get? a drowning EM girl. I don't get it! I used to be such an amazing swimmer. And once I get in the water, I can't get any air in. I felt like I was at the bottom of the ocean scuba diving again without any air. The cold water must have frozen my lungs again because I thought I was going to die. And it wasnt just me. People were getting thrown all over each other because of the waves...the buoys were all messed up and no one knew where to go and it was total chaos. I looked around for a canoe and couldnt find any of them.

"The chief cause of dissapointment and failure is trading what you want the most for what you want at the moment"

I needed help and there was no one to help me. The waves kept smashing me, i still couldnt get any air in. I thought that I was going to die right there. i dont want to die here... i didnt come this far to die here! Damn it... this sucks. I HATE THIS! why cant i just breathe? I was getting very angry at my lungs... open up! Then the puking starts. Apparently my throat was also malfunctioning and i got water in my lungs, and I started puking and trying to stay afloat. *sigh* I threw up 3 times and then i just didnt care anymore. I just wanted to lay there and not move. For a split second, I almost just gave up. then the fight in me kicked in again... Thank GOD. I swam back and still wasnt getting much air, and my lungs were making a weird sound. I finally made it back to the swim finish. I come out of the water, and stumbled, crying, over to Dan and told him i dont know if i can go on anymore. I was debating my options in my head, and I notice the quit option is popping up more than normal these days and it is getting louder.

Still being stubborn, I decided to just try biking and if i cant bike then ill quit. On the bike I threw up twice...had water flowing out my nose and my throat and my lungs were aching. THis sucks I thought to myself! I kept pedalling trying to salvage my race, but there was nothing left.

I contine to bike, trying to go as fast as I can. Then I see a girl go down, sprawled on the ground not moving. The realization hits me again that that could be me. There was so much road rage at this race. So many angry drivers yelling at us to get off the road. I just couldnt believe all the rage. Somehow I manage to finish the bike... alot slower than last year, but I managed it. I had a lot of time to think and feel sorry for myself on the bike. I once again wished I was a normal girl, with normal race difficulties or normal race strategies. I wished I could be off my bike, I wished I could be pain free..... kept on wishing for things I know wont come true. I just want to be part of this world. I want to be an Ironwoman. I want to do things normal people do.

I wanna be where the people are
I wanna see, wanna see them dancin'
Walking around on those - what do you call 'em?
Oh - feet!

Flippin' your fins, you don't get too far
Legs are required for jumping, dancing
Strolling along down a - what's that word again?
Street

Up where they walk, up where they run

Up where they stay all day in the sun

Wanderin' free - wish I could be

Part of that world

I finish the bike and saw Dan. Once again I feel the urge to quit. I debated again what my options were.... Im not a quitter, but it was very tempting.

"You may not think you have what it takes to persist in your efforts for long periods of time. Yet all you must do is persist for just a moment, and then another moment, and then another."

My legs just didnt want to move anymore, my lungs hurt, my whole body just wanted to lay down and die. But, I decided to try running 1 lap. Maybe if I can do 1 lap, I can do 2 ? So off I trot, up the stupid steep hill at the beginning. Not once did I feel good on the run. I dont even recall feeling good at all doing the whole race....except maybe when i finished ! haha...

'It does not matter how slowly you go so long as you do not stop.'

I manage to run 1 lap and I see Dan and he tells me that my nana and Norma are right around the corner waiting for me. That sealed the deal. There was no way I'm not finishing this race now. Come on body, quit your bitching and just keep going. I may be slow, but it doesnt matter...just keep putting 1 foot in front of the other. It made me feel so good to see Nana and Norma and Dan cheering for me, that I wanted to make them proud. So I hobbled that last 6 miles... shuffled, trotted, walked... everything except crawled. haha! So I come up on the finish... I see Dan and tears start in my eyes... I can finish! I can't believe I can finish today! then i hobbled over the finish line and Nana, Norma, and Dan were there!! THat was such a horrible race, and I may have had my doubts, and my quitting moments, but when it came down to it, i didn't quit. I FINISHeD!!!!!!!!

It started out wrong in the swim and just kept being one big struggle just to cross the finish line. I kept having to make that choice, to quit or not to quit... I finished and i know i should be happy with just finishing that horrible race, but its not the same as it used to be. I used to find pride and happiness for sticking through it and not quitting and finishing something that seemed impossible at the time. But something has changed. I'm tired. I'm tired of having fight through so much pain. I'm not meaning to whine or make excuses or seem weak, but I'm tired of having to not quit when most people would quit. But once you learn to quit it can become a habit...and im scared that if i quit in a race, i will quit in life.

'Its the possibility that when you're dead, you might still go on hurting that bothers me."

and the after race depression has already sunk in. I think after a race like that, it reminds me I am not a normal girl. It reminds me I have EM, and I have to struggle more than the average person just to get out of bed. I don't like that reminder. I just want to be free from pain and have a race where i dont have to go through bloody hell just to finish. Why do I do this to myself? Why can't I just quit the race if I am having a horrible time and the pain is unbearable? What am I trying to prove? Why do I have to prove to myself that Im not a quitter? People ask me why do i do this to myself and if it is even worth? WHY? I guess because I am alive... I am not screaming in bed... I did not kill myself and I refuse to let EM dictate my life.

so I stand here once again, exhausted.... but proud. Proud that I didn't give in even though no one would have blamed me if I did. Once again, I finished.

And the fact is, I'm scared. I'm scared that my time is up. I'm scared I'm going to end up back where I started, in bed, not being able to do stuff I want to do. I'm scared that this is it. My time has run out and I dont want to end up confined in bed. I want to be free. I want to live my life the way I want. I can't go back there. But what I have found....is that you can have all the determination in the world, all the guts, and heart you can possibly have, but sometimes...its not enough. Sometimes you can't make your body do things it can't. I just want to be free from pain. One of these days, Im just not going to have any fight left. i won't be able to help anyone anymore. I wish I could find a cure,, but I just want to make a difference. I also want to love myself and take care of myself. I'm sure my story isn't over yet. I'm sure I will find a different way to help or maybe its time to start a new chapter of my life. I'm just going to continue on my way and I'm sure it will find me, just like love found me.

I think my Full Ironman in Florida in November, might be my last long distance triathlon race. I need to find a new goal. I am going to need a miracle to be able to finish an Ironman! I need to train for it, find a way to work through those horrible days. Something, I need to find something, do something different. And give it one last shot. Hopefully , for one day , if I can complete the Ironman, I will be free. But, for now, I continue to fight, and keep going on towards my dream. And i hope that what I'm doing, helps you to keep going and not give up. Yes, life hurts, and FIRE TAKES NO HOLIDAY, but, the chance of achieving your dreams is worth it. You will have bad days, but the good ones when you have them, ARE REALLY REALLY GOOD. And since we have really really hellish days, then we can appreciate it more than the average person. So, maybe I shouldn't strive to be a normal girl anymore. A normal girl does not have what I have. I may have my extreme limitations, but I have more guts and heart than the normal girl.

I have Erythromelalgia, and I am extraordinary. :)

and you are too. There are not many people in this world quite like us, we just have to show them. So burn bright EM sufferers, burn bright.

"I feel like there is no need for conversation
Some questions are better left without a reason
And I would rather reveal myself than my situation
Now and then I consider, my hesitation

The more the light shines through me

I pretend to close my eyes

The more the dark consumes me

I pretend I'm burning, burning bright"

You will be known by the tracks you leave behind

2009-07-04T14:18:00.004-04:00

"Your vision will become clear only when you look into your heart. Who looks outside, dreams. Who looks inside, awakens"

Happy Fourth of July! As I watched the hot dog eating contest where they compete and shove 68 hot dogs in his mouth in 10 minutes, I think about my half ironman race approaching. I watch them as they shove hot dog and bun in their mouth so fast they make me want to throw up and i think how horrible I would be at this competition. They probably think the same about me and why would I be crazy enough to do a half ironman let alone a full Ironman in November. At least their competition is over in 10 minutes and not 6 hours! haha... So here I am full circle, about to do the Amica Providence Ironman 70.3 next Sunday the 12th. I doubt I will be as fast as I was last year, with an injured sciatic nerve, and not as much training. As I struggle with my sciatic nerve injury, I wondered if this was the "permanent nerve damage" the neurologist was telling me about. But I try not to think about the far off future, and try not to think about living with EM for 10, 20 , or 30 more years...sometimes i'm not sure I will be able to. I get scared of the thought when and if my body gives in. So I will do this half ironman as training for my full ironman in November. I hope I can finish that this year. And then maybe it will be time to switch venues. My EM pain stricken body is not meant for running long distances, especially not in sandals. But there are plenty of other races and other goals for me to do. But, I havent given up on my dream to do the ironman.

I just moved in with my boyfriend Dan and he is getting along better than I expected with my 2 big kitty cats. They seem to like him and they love their new place on the 14th floor. I still think my cats are my angels who were there for me when I got sick when I lost so much. I have to thank Dan for letting them in. They are big creatures who he calls the polar bear and little lion. :) I never imagined I would be here and that I would be this happy. When you spend some much time in the dark and gloomy, the bright light can be blinding at times. When you get used to pain and misery, you can't help but think when is it going to be taken away again.

"In dreams and in love there are no impossibilities"

I have found my new fun passion and that is travelling. In May, Dan took me to Antigua for 10 days. I love the sun and the ocean. I have been to 3 new places on my passport so far: St. Lucia, Bahamas and Antigua...and in September we are going to HAWAII!!!!!! I've always wanted to go to Hawaii... ever since I was younger. I'm so excited!

Antigua was so much fun! We went on a speed boat tour around the whole island. We snorkelled with sting rays, saw an Eagle ray and a turtle. Floated around on my favorite raft "baby blue" that I still miss today. We saw this entertainer who danced and breathed fire. I thought that was so cool! I want to do that, I bet I could do that very well since I basically live in fire. I might as well get paid for it too! haha.. Maybe Ill do that for charity after my Ironman. :)

I love scuba diving and had a rather frightening experience in the water this time. We reached 60 feet under the water and all of a sudden, I was out of air ?? I looked at my gage and it said 0 !!! How can it be 0? I started out with 3000 ? i was totally confused and somewhat out of it because it had been at least 1 minute or so before I realized I was spasming for air. So I look for my buddy Dan, he was at least 10 feet or so below me and you can't just swim down without equalizing. By the time I reach Dan I was apparently stupid and instead of signalling him that i was out of air, I showed him my gage!!!!!!!!!!!!! He just tapped on it because he must of thought my gage was broken... duh. I then panicked and made the signal need air so he gave me his alternate regulator to share air and we ascended. Tiny the scuba guide must think im an idiot.. apparently I didnt turn my air all the way on!! and when we reached 60 feet i couldnt breathe out of it anymore. I didn't have air down there for 3 minutes and it was a long 3 minutes. What if I had passed out before I reached Dan? i am so thankful I used to be a swimmer and can hold my breath for a long time and that I am used to convulsing underwater without air, so it could have been worse? I remember thinking that I didnt come this far in life just to die now. I figured EM would kill me eventually or I would spontaneous combust because of the heat. I guess you never know when or how its going to happen. You never know when everything you love will be taken from you, so you might as well enjoy it while you have it and cherish it. Basically, to live like you are dying. So, you might see me in a race, or out there on vacation, sticking out my tongue, or acting silly, but I will be living and having the time of my life, and I wouldn't change this for anything. Yes, I may have EM, but I am way more alive than I used to be. :)

"Try as much as possible to be wholly alive, with all your might, and when you laugh, laugh like hell and when you get angry, get good and angry. Try to be alive. You will be dead soon enough.”

Things are only impossible until they are not

2009-04-29T21:35:00.011-04:00

"To describe the agony of a marathon to someone who's never run it is like trying to explain color to someone who was born blind."

I woke up this morning from a really long sleep, still in amazement that i was able to finish the marathon! So many things went wrong, and yet i still managed the 26.2 miles. It all started on Wednesday night before we left for California. I don't know exactly what I did, but all of a sudden i had excruciating pain shooting down my left leg and up my spine. I couldnt even stand on my leg!/? and i couldnt walk and I was really worried. Partly because for me to feel pain it has to be bad and partly because the marathon was so close. Apparently I hurt my sciatic nerve and all night and the next day it ached and had to limp around. I went and got a sports/deep tissue massage to see if it helped and it did seem to help a little, but probably not enough to complete the race. It was scary to me that I was so close and might not be able to run. I hate quitting, I hate not finishing, and it doesn't matter if it is injury related, I DON'T LIKE IT. So we leave for CA, and I prayed and hoped it would get better. On Friday, we drive the course and maybe it wasnt a good idea, or maybe it was. Either way, IT WAS VERY HILLY and that 2 mile hill seemed to go on for miles. There were lots of other hills as well and it was disappointing because there were no place for spectators to watch and Dan couldnt come to the start with me either. It was going to be a very lonely run tomorrow I thought to myself.

I woke up sunday morning at 330 am to get ready for the race and i wondered if I was going to be strong enough today. I boarded the shuttle at 415 am and sat in the bus for the hour ride to the start. It was in the 40's that morning and i was in my shorts and tank top and sandals. I bought one of those race wraps for 5 bucks that was white and was a long sleeve wrappy thing that i figured i would throw away fairly quickly in the morning. We all get pushed onto the course and stood in line waiting to start. I was told the day before that we only had 6 hours to finish the race, and it was 6 hours from the gun start, not chip time...which was highly annoying to me being a slower runner. Last year I ran my marathon under 5 hours, and they said to add 30 minutes to your best run time because of the hard hilly course... so i was looking at close to the 6 hours with a hurt leg, and irritated sciatic nerve@!

Hills, hills, and more hills!

While I was waiting to start I heard lots of people commenting on my sandals as usual. Some called me stupid, some said i was brave, some were mean, and some were curious. I gladly shared my story with whoever I could. Finally the gun goes off and I start running. Supposedly the first 5 miles are the easiest. My body was having a hard time moving! I had horrible shin splints, Im assuming from standing there for so long in shorts. i also had a hard time running on all the twists and turns, the road was always at a slant and IT IS REALLY HARD TO RUN IN SANDALS ON A STEEP SLANT!!!!!!!!!!!! my feet were scraping the ground and my ankles were killing me... why oh why did i pick this hilly twisty turny race? I had a long time to think about that same question during the race. About 10 years ago, when i ran my first marathon, afterwards i decided to never run one again, haha...who knew? But back then when i was searching through the races, I stumbled on the big sur one. i don't know why i remembered that race, but I decided that I wanted to run that race because it was supposed to be the prettiest race in N. America. For some reason, it stuck in my head, and 10 years later, i signed up to do this race. i imagined a beautiful course, running over the bridgest, looking at the ocean... THEY SHOULD HAVE MENTIONED THE HARDEST COURSE AS WELL. I look at my watch at mile 2, 18 minutes, that is a 9 min mile pace which is a good start. Last year i ran that pace until mile 12 before I bonked, so i vowed to fuel myself better this time... mile 3, I was slowing down and my sciatic nerve was starting to fire. WHAT AM I GOING TO DO? HOW THE HELL AM I GOING TO FINISH 26 MILES WHEN IM IN PAIN AT MILE 3? it gets worse mile 4, and mile 5 I almost quit. I could only run/shuffle for a few minutes before having to walk. It seemed grim and hopeless. I didn't come this far to quit at mile 5! I started to tear up as I realized I couldn't finish. Why must I always have to run with so much pain? Why do I insist on doing this to myself when it hurts so much/ Determintation and inner strength can only go so far when the body is not able. I made a choice. Ill be damned if i quit now... i vowed to make it up hurricane point..the 2 mile uphill climb at mile 10. If i could make it up that, i could at least say I tried. Now the problem was, how do i make it to mile 10 when I'm only at mile 5 with pain?? So, I tried different running styles, I tried swinging my hips and overexaggerating my hips and for some reason, it helped? so for the next few miles I run up hills, past cows that made me feel like I was NE again, and walked occasionally to rest my leg. Once we got by the ocean on highway 1, the wind picked up like crazy, and of course, IT WAS AGAINST US. Im sure i looked odd running like i did, but i always look odd running anyways. Mile 8 and then mile 9, and then I start running down the hill that precedes the dreaded 2 mile hill. I look up as i start the hill, and for some reason, it wasnt so bad. I guess if i can run with the sciatic nerve pain, and em pain, that the hill pain didnt phase me. I get to mile 11 and I was getting tired..the wind was picking up and getting stronger as I got closer to the top. No wonder they call it hurricane point.. at one point, i was leaning into the wind, laughing, because it seemed like i was getting pushed backwards.. YOU HAVE GOT TO BE KIDDING ME.. it was funny. I finally got to the top. I saw people running with others getting their picture taken, celebrating together, and at that point, I felt so alone. No one to share this experience, no loved ones able to watch, just me, alone and in horrible pain like normal. I keep running. Ok, I made it halfway, time to reassess. I looked at my watch...if i do make it, its going to be close to the 6 hours. THe rules of the course were that if you didnt make it to mile 22 by 5 hours, they would pull you off the course in buses. And if you didn't finish by 6, the same , and you couldn't finish officially. I'm super glad I had a Garmin Forerunner on that i borrowed. It tells you the pace you are running/walking at. I was starting to feel the effects of running differently in my hips and the nerve was shooting fire up and down both legs and spine. I was really amazed i was still running at all. Mile 15, mile 16, mile 17... it was taking forever, and the pain was building. I finally hit mile 20... only 6 more to go. i knew it was going to take everythiing to make it in under 6 hours. I hit mile 22 at 4:48 or so... just barely under the cut off. i saw the buses ready . All i knew is that i didnt want to be on that bus. i was shuffling/walking/running at this point.

"Do you think when an animals are being chased by something when it gets a tired it stops. Hell no. Be that dumb animal when you run and don't stop until you've crossed the finish line."

Each mile seemed to take FOREVER. At mile 24, I saw Dan. It made me cry... he must have walked down from the finish. They werent supposed to let people...only let them walk a little bit from the finish. BUt i guess it didnt matter for the slow runners like me. He walks with me a bit, motivating me to finish... i look at my watch. Im 1.2 miles from the finish and i only have less than 15 min. It might seem easy for a normal runner, a fast runner, but for me, with the pain at its highest... it seemed mean. But, i started running. I felt like forrest gump, but they were yelling... RUN FOREST GIMP RUN... so i was runnan... and i managed a 11 min mile pace that last bit. Dont ask me how, or where that came from. But, I FINISHED!!!!!!!!!!!!!! one of the hardest race yet, and i finished?? I still cant believe it! WOOHOOOOOOO!!!! 5:56... haha. Nothing like cutting it close!

i met some cool people on the run. At mile 20, I ran a bit with , who had just did Ironman china the week before. He might know pain at this point, because i can only imagine me not being able to walk for a week after the IM let alone running a marathon. He said he recognized me from TV, ESPN. Another runner recognized me from the Florida championship on NBC. It made me happy that people watched the shows and actually remembered me! Maybe on my wild adventures I can help someone and perhaps find a cure by the right person reading my story.

Anyway, i walked through the finishers tent, got my cool medal, and my free beer. I didn't really drink it because it sounded gross, but i figured i'd get one for kicks. all i wanted was the chocolate chip cookie in the car waiting for me. YUM! When i sat down in the car.... i felt relief. FINALLY AFTER 6 HOURS ... That shower felt awesome! I looked down at my feet and saw the huge blister on my right foot. Hmmmmmm... that is going to feel good in the morning! just like last year, i had a hard time sitting down, and standing up, and basically walking.

"Marathoning is like cutting yourself unexpectedly. You dip into the pain so gradually that the damage is done before you are aware of it. Unfortunately, when awareness comes, it is excruciating."

We drove to san fran to go sight seeing. We went to the Irish bar right next to the hotel and i got my traditional BIG JUICY CHEESEBURGER! and a sundae from Ghiradelli Square...YUMmmmmmmmmmmmmmmmm!

We went to alcatraz, golden gate bridge, and bus tours. It was very hilly there too! I'm tired of hills!!!!!!! But i got to ride on the trolley up the huge alcatraz hill...haha Dan

the next 2 days we went sight seeing around San fran. I couldnt barely walk, so i hobbled and my huge blister became a huge blood blister, and that hurt so bad to even walk on it. I guess thats the price to pay. It still hurts today, but San Fran was cool.

but strangely enough, this motivates me for the IM in November. I'm going to train really hard, especially on the bike. Because its going to take a miracle to do a marathon after 112 miles. But, if i could finish that marathon with all that pain, and actually hobble over the finish when i thought it was impossible to finish... maybe just maybe, i can do an ironman.

"What is it? A different way of seeing things? An obsession with form, technique, and precision? Is it power, pure and simple? What is it that makes a champion? Maybe, it's just the absolute refusal to be anything but."

What should I be but just what I am

2009-04-23T08:20:00.006-04:00

MARATHON IN A FEW DAYS!!!!!!!!!! YIKES

It has been 1 year since my last marathon and frankly...I didn't plan on racing a marathon again. I had planned on doing my Ironman last year then moving on to another, different sort of race. But here I am full circle, doing one again. They say that

"You have to forget your last marathon before you try another. Your mind can't know what's coming."

The problem is, I haven't forgotten, I can never forget that horrible additional pain. I still have nightmares about it, and dreams of so much more pain than I am already in, getting so much worse that I just burst into flames one day, or go crazy and can't handle it anymore. But here I go again... knowing how bad its going to hurt, knowing how hard I'm going to have to push myself just to be able to finish. I will admit it scares me! But, if I let pain win...even just 1 time, and not do a race in fear of the pain, then it will keep on winning and I will not accomplish anything. I will just go back to laying in bed and screaming....and that sounds so much worse!!!!!!! I have to focus on why I am doing this ...and I'm doing this not only for me, but for all EM sufferers out there... maybe in one of these crazy races, I will get attention to the right person who can find a cure. maybe I can inspire one other person to do something they are afraid of. Who knows? All I know is that I will not let the fear of pain win.

You can’t fear pain. Pain is to be expected. It is not a bad or negative thing. You almost need to embrace it, and then learn to deal with the feeling.

ok so Big Sur marathon here i come!!! I signed up for this race, partly because before I was diagnosed with EM, I looked through a marathon book and decided someday I would do the Big Sur marathon..the book said it was one of the prettiest race in the US and for some reason I wanted to do that one. I didn't know at the time, that I had put it on my pre sick "list" , and now it is my mission to do all the things on that list even with EM. Its kinda funny that I chose this race.... ITS SUPER HILLY!!!!!!!!the book should of said it may be the prettiest but its also the hilliest! Mile 11 to mile 13 or so...IS A 2 MILE HILL... the race directors say there are 4 false summits that you hit and think you are done, but youre not.. haha... its kind of like my life. :) Just when you think the pain is so bad and couldn't get any worse...IT CAN! :) oh well, i am trying to think of it as just a hill.. its not impossible, just slower. I will do the best I can and hope i can make it up that hill. People without EM just can't comprehend what this means... It hurts to walk up a hill, climb stairs, anything that burns the legs and pools all the blood in the legs, takes away O2 and blood from the brain/heart/lungs...and literally feels like i'm dying...and now i can enjoy this MARATHON ON SUPER BIG HILLS... am i crazy??????????? I must be... I must of picked this race to torture myself, or maybe scare EM into submission.. haha

they say that the pretty parts of the course will distract you from the pain of running the hills... haha... i'm sure i will be cursing at the pretty parts when i get there. :P at least i will have Dan to cheer me on at the finish. It is really lonely during the race and know there isn't anyone to see you. It is always nice during the half ironmans, to see him cheering me on mid race. It makes me less lonely, to focus on finishing instead of the pain. But the way the course is set up, I will probably not see him to the finish. so it might be 5+ hours of horrible pain all by myself. I don't have the ESPN crew talking to me, making me laugh, etc. It will just be me, and the pain. May the running gods have mercy on me. Hopefully it will be a sunny cool day, with no pouring rain and ice like last year. all i can ask of myself is to do the best I can. So ready or not, here i come. And maybe, just maybe, if i can finish this race, I can make a difference.

Henceforth, I whimper no more, postpone no more, need nothing. Strong and content, I travel the open HILLY 26.2 mile road.

"[Scientific testing] can't determine how the mind will tolerate pain in a race. Sometimes, I say, "Today I can die.'"

NBC !! etc...

2009-03-18T19:35:00.009-04:00

Hi Everyone,

I know it has been a while since posting a blog...but i needed a break and was a little lost on what to do next. I took some time to myself, and took some fantastic vacations with Dan. I just figured what I wanted to do would come to me... and it did.

First of all:

I will be in the NBC broadcast of Ironman World Championship 70.3 NBC Sunday
April 12, 2009, 4:30 - 6:00 p.m. EST

Then April 26, I will be running the Big Sur Marathon in California. I didn't think i would want to run or feel the need to run another marathon. Been there, done that! But, since I will be attempting the Ironman Florida in November 2009, I felt I should do another one. The big sur race is supposed to be one of the prettiest marathons in the US because you run on the ocean and across bridges and stuff... maybe it will be a distraction from the pain? especially since I dont have the ESPN crew following me around keeping me entertained. And Dan has never been to San Francisco before so we will go there after the race... This way Dan can see where I escaped from Alcatraz a long time ago. haha :P

SO, what have I been up to these past few months?? I have been putting together my bucket list... to be listed in a later post.

In December, Dan took me to St. Lucia for 10 days. It is part of my bucket list to go to all of the Caribbean Islands and sunny beach places :). So, I had to get my passport for the first time! :) I loved it there...I wanted to stay there! We stayed at the Sandals Resort, which I highly recommend! Also, I got certified as a Scuba Diver! There was speculation on whether or not I could even scuba dive because of EM and the blood vessels not working properly. The problem with Scuba is that you have to be able to equalize or it will cause permanent ear damage... so can someone with defective blood vessels equalize????? the answer is YES!!! I love scuba diving! I will add pictures soon. :) I felt at home in the ocean with the fish. And Dan loves scuba diving with me because I CANT TALK UNDER WATER...haha! Although, I did try and got very frustrated with stupid hand signals. It was also strange that I got very cold in the water! maybe because im usually so hot?? Anyhoo, I loved it there! One of the best times in my life.

Then in January we went to the Bahamas for a short 4 night trip where we stayed at the Riu. Bahamas was more like Florida, but I think i didnt like it as much because it was too short! :P
We went Scuba diving there too but the water was way colder, probably because it was January! And there was no Southern Comfort there which was highly upsetting...haha so we drank Blue Ocean instead and that was quite nice! and it turns your tongue blue.. so that is 2 islands down, lots more to go!

to be cont....

Sports Illustrated!!

2008-11-26T15:50:00.000-05:00

Check me out online and on newstands Dec. 1,

http://sportsillustrated.cnn.com/scorecard/faces/2008/12/01/

"Live life fully while you're here. Experience everything. Take care of yourself and your friends. Have fun, be crazy, be weird. Go out and screw up! You're going to anyway, so you might as well enjoy the process. Take the opportunity to learn from your mistakes: find the cause of your problem and eliminate it. Don't try to be perfect; just be an excellent example of being human."

World Championship Ironman 70.3 FINISHER!!! :)

2008-11-12T17:07:00.014-05:00

"Most of the important things in the world have been accomplished by people who have kept on trying when there seemed to be no hope at all.

Yes, that would be me... the EM girl in sandals, with a broken foot, finishing the Foster Grant IRONMAN World Championship 70.3 !!! I finished in 6:25 ! Started 35 minutes behind the pros, and was 25 minutes slower than Rhode Island..... But to tell you the truth, I was surprised I even finished the run with a broken foot! I was second to last in my age group, but hey, someone has to finish last... might as well be me! I kind of figured that much because I was the only one in my age group to not "qualify" for the race, so I was racing against the best of the best! :) I did the best I could, and the run was extra painful this time, BUT I LOVE FLORIDA!! Wish I could come back again next year, but what chance do I have to qualify?

We arrive in Florida on Thursday, we rented a car and stayed at the Host Hotel in Clearwater. That turns out to be great because the start and finish, expo, and media interviews were all held there!!! The beaches in Clearwater were gorgeous.. white sand, clean, crystal waters. Much better than swimming in the Ohio River, or the Hudson!!!! ew!

Thursday night I had an interview for the Official NBC broadcast of the event.. and guess who were the camera men??????????????????????? THE TEXAS CREW THAT FILMED FOR ESPN !!! I LOVE THOSE GUYS! Jeff, Chris, and Terry were all there and it was great to see them again! They also followed me around the race on a motorcycle part of the way, and it was a great deja vu for me. Hope to see them at some other race in the future! :) You guys still rock! Can't wait to tell Scott from ESPN.

Friday night I had an interview for the Ironman 70.3 news crew to be shown locally and in Omaha, and New York. Genevieve was awesome! Made me feel less nervous! :) I did stumble my lines a little when asked to say: "Foster Grant Ironman World Championship 70.3" .. felt like a girl on Americas Next Top Model that can't her lines down, and they say cut, and take 53 or something.. haha Genevieve and her colleague Lisa have also been pitching my story elsewhere... I MIGHT BE IN SPORTS ILLUSTRATED!!! AND RUNNERS WORLD!!! How cool would that be?? Any chance to raise awareness for EM is awesome! :)

Thanks everyone for giving me these great opportunities!!!

Back to the race... Saturday morning I get to the start and Im pretty nervous right now partly because of the anticipation of pain... partly because I'm racing with the best!

Something funny, I was supposed to race with a baby blue race swim cap, but since I was being followed by media, they gave me an orange swim cap so they can follow me with a helicopter...haha and my bike was racked next to other media and pros!!! haha :)

I stand there at the start line, happy to be there, and excited to be a part of the race. We start the race, and I go into the water, scared I was going to have a choking fit like I always have had in the past cold ocean swims... but I finally found the trick! use a longjohn wetsuit instead of a full one. The full one makes my body hot, and the shock of the cold water on my face and lungs makes it constrict and I cant breathe because I can't handle the change in temperature... but with the sleeveless wetsuit, it made my arms chilly and it wasnt such a shock of temperature!! :) :) yay! I had a good swim and hoped it was a sign of a good race to come. :)

The bike was interesting to me! So many cheaters!!!!!!!!!!!! There were groups of peletons left and right passing me and annoying me. Supposedly its a draft illegal race, but it seemed there were only a couple of us not in a group of 15-20! ???? There were penalty tents with no one in them, and no one seemed to pay any attention to the rules. Is it common knowledge that they dont care about drafting?? Maybe I should have jumped on with them and gone faster. I could have gone faster drafting with 10 others... ??? BUT HOW CAN THEY CONVINCE THEMSELVES THEY ARE NOT CHEATERS? What do they tell themselves? Anyway, I could have gone faster, but I did it all on my own, and I got a flat tire!!!!! So not fair! I am rubbish at changing them, especially the zipp wheels... I think maybe I dont have the finger, wrist, strength and dexterity? I was glad to get off my bike anyway...tired of being blown by. I saw Dan at the end of the bike, and that made me happy to see a friendly face before I start the dreaded run . I kept telling myself that it is just pain, and the extra pain from the broken foot wouldnt be that bad in comparison. ? haha

So, as I go into transition they had a camera following me through, and then as I ran out there was the crew on the motorcycle ( pic above)... it made me happy to see them again. My foot hurt but I hobbled on and managed to run, although i had horrible stomach cramps... after 6 miles, my left leg, hamstring and glute started to seize up.. Must be because I was favoring my right foot.. The cramps in my legs were bad, and caused knee pain, but I just kept on moving. I didn't have any expectations of getting a PR, so I just did the best I could. Thank you to the anonymous people who put messages on the digital screen when you ran by. I don't now who did it, but it was nice to see it! The first time through, it said " You are a winner," and the second time through it said "You're awesome".. haha :) I think its a cool idea to let people leave you messages..makes the run less lonely. Back in the pack was lonely on this race, but at least it was Florida! One girl said to me... "the longer you are out here, the better tan you get"... haha! Don't now if I agree because my trisuit leaves a nasty tan line. :P One camera guy asked me why am I still smiling... and i replied in Kate fashion:

"I am trying to make my smile muscles hurt as much as the rest of me! " :)

So as I run in to the finish, I tear up because I am finishing when I wasnt sure I would... and I was finishing a World Championship! :)

I still can't believe I was there! We stayed a few days extra to soak up some sun and get a tan and went to the Number one beach in the U.S.... I love the sun and didnt want to come back to the cold and dreary...not to mention reality. :)

"Courage, it would seem, is nothing less than the power to overcome danger, misfortune, fear, injustice, while continuing to affirm inwardly that life with all its sorrows is good; that everything is meaningful even if in a sense beyond our understanding; and that there is always tomorrow."

and you might come out finishing a World Championship!!!! haha

NBC !! and other news :)

2008-11-05T09:17:00.003-05:00

"Give light, and the darkness will disappear of itself."

I received an email from the NBC producer of the World Championship broadcast, and he wants to interview me for the show!! How cool is that? So Thursday afternoon I have an interview with them and Im so excited about it! NBC!!!!!!!!

I also have the local media Inspiring Athletes interview Friday morning for local news and Omaha local news! I'm actually on the Ironman website! :

http://ironman.com/events/ironman70.3/worldchampionship70.3/clearwater2008/foster-grant-ironman-world-championship-70.3-inspiring-athletes.

So here I go, testing myself again, embracing my pain and try to make it work for me in the race. Hope and pray that I can finish, that I will be able to stand the pain again, hope that I can do the best I can. Life is funny to me.... I seem to either be in extreme misery, or extreme happiness... and all these good things that are happening to me, all the help I am doing for my disorder, all the friends I have met with EM, I get another chance to help... maybe in my small way I will help find a cure, help people live with this extreme pain, help them to not give up even though it seems there is no hope. But I cant help that fear that its all going to come crashing down... It seems that this is my path.. that it is possible to leave your mark on the world, no matter how small it is... one person can make a difference! It is a domino effect, like the pay it forward principle.. turn your path to helping people with a positive attitude, and then positive things will happen to you. Look at what is happening to me?? It still blows me away.. so look for me at the race, I may come in last place, but I will be smiling. :)

“Live. More than your neighbors. Unleash yourself upon the world and go places. Go now. Giggle. No. Laugh. And bark at the moon like the wild dog that you are. Understand that this is not a dress rehearsal. This is it. Your life. Face your fears and live your dreams and take it all in. Yes, every chance you get. Come close. And by all means, whatever you do, get it on film.”

Defying Gravity

2008-10-29T17:39:00.008-04:00

"Something has changed within me

Something is not the same
I'm through with playing by the rules
Of someone else's game
Too late for second-guessing
Too late to go back to sleep
It's time to trust my instincts
Close my eyes and leap"

In one week and a day I head to Clearwater Florida for the World Championship... still can't believe Im going!! Am I ready? Not exactly...I have a stress fracture in my right foot that hurts to run but Im still going to attempt it. I just got an email from the media rep and they want me to do a 10 minute interview on Friday that they will show pre and post race on tv!!! Another amazing opportunity to raise awareness for EM! I will do my best and hope it reaches lots of people. I can't believe I am getting another chance! :) I would have to admit that I'm scared to race at the World Championship among the top triathletes in the world. There is a very good chance that I might come in last. But does that really matter? Before I got sick I hated to lose.. always wanted to be faster and better. But what is the definition of "losing" or coming in "last"? Just by being at the race I am a winner... a fast person actually said to me that only losers would say that... and that the only thing that matters is first place, the rest are losers, haha... But he has a lot to learn. Some day he will get older and slower and not win anymore...Maybe he will get injured, or sick like me... what then? Not everyone can win races, not everyone has the genetics to be super fast and not have to fight to even be able to compete. All I want is the chance to compete, and to have fun with it... if its no longer fun, then why do it? So even if I cross last, I will do my best to have fun and enjoy the experience.. I am actually going to race at a World Championship??? Who knew??? haha...

On a different note, Dan surprised with me with Wicked Tickets for our 6 months!!! It was a complete surprise and it takes a lot to surprise me without me figuring it out...haha. Anyways there were several parts of the show that I loved...if you dont want to know bits of the show dont read this paragraph and skip to the next one.. :) When Alpheba the supposed wicked witch used her magic to help her sister in the wheelchair walk again... it brought me back to when I was in bed and got back out of bed and started to get my life back. Maybe some magic was used on me? Sometimes I feel like the outcast where lots of people don't understand me and my disorder, and try to dismiss my pain... I loved the movie because the Wicked witch wasnt actually wicked, but she stood up for what she believed in !! I loved the Defying Gravity song that I have quoted in this blog... and my favorite song,

"I'm not that girl" which seems to define my life, where the guy I love usually loves another girl.

"Ev'ry so often we long to steal To the land of what-might-have-been But that doesn't soften the ache we feel When reality sets back in ...Don't dream too far, Don't lose sight of who you are, Don't remember that rush of joy, He could be that boy, I'm not that girl"

Sometimes after I go after a dream or pretend I'm girl without EM, I am brought back down to reality... Some dreams may be out of reach for me... but doesnt mean I cant try... ? Why can't I get the happily ever after dream? Just because I have lofty dreams of being pain free or perhaps unrealistic dreams of a happy ending, doesn't mean it doesn't hurt to not be able to reach them.

For Halloween, I had planned on being a Firewoman... putting out fires because I thought that would be appropriate...the problem is, I shopped for it on Halloween Day... haha! I couldn't find the fire extinguished part of the costume... maybe that is ironic and appropriate!! I so far make a lousy fire extinguisher girl... so, instead I embraced my fire and became the fire starter. Made my own costume and I was unique! There was no one else like me in the loads of people we saw on Halloween!!! :) We went to the Halloween Parade which was crazy packed but fun!!

"I'm through accepting limits

'Cuz someone says they're so

Some things I cannot change

But 'till I try, I'll never know

Too long I've been afraid of Losing love -

I guess I have lost

Well, if that's love

It comes at much too high a cost"

THE INVISIBLE HUMAN TORCH

2008-09-23T20:38:00.003-04:00

"Life is like a snake crawling out of its own dead skin."

I have been invited to the Ford World Ironman 70.3 in Clearwater Florida on November 8th!!!!!!!! I would be racing the best of the best because normally the only way to go is to qualify by winning a race. It is a once in a lifetime opportunity for me! I would give me another chance to tell my story and raise awareness for EM! Now here is the kicker, I need to raise some money to be able to go! Does anyone have any ideas on how ? Or any suggestions? I guess if it is meant to be, there will be a way.

I have received a lot of emails from EM sufferers curious in my qwest to battle the heat in bikram yoga. So it has been 10 days for me. Have I gotten any better at dealing with the extreme heat?? Not yet, every class makes me either want to pass out, puke, or bursting into a huge fireball! IT IS SO HOT AND IT HURTS SO BAD. Do you know how hard it is to relax enough to do a yoga pose in heat? I just want to run away instead of hold these positions.. so why you ask me? Because I can! I have gotten better at some of the poses... I feel amazing when I am done, partly because of the inner strength it takes to even do yoga in a 110- 120 degree room for 90 minutes... I can feel a difference in my body, in my posture, in my flexibility. It will be a slow process, but Im still trying. I have gotten a little better at breathing through my nose like Im supposed to and not hypervenililate! I am happy with my progress so far, and will see if I have any more improvements by the end of 30 days. I have been taking my temperature before and after class to see. Before class, my average temperature is 96 degrees - 97... which is my normal body temperature. 10 min after class, my temperature has been averaging 102 !!!!!!!! The third day when I actually did puke , it was 103.5! I do my best to take the temperature at the same time before and after but I have no idea if the normal persons temperature rises 6 degrees. So, my whole plan is to see if my temperature after 30 days will rise less or not. The first week it was closer to 102, or mid 102s, this week was lower 102 and actually had 1 das of 101. I doubt this is healthy for me to have my temperature rise so high, but I have increased my water, and feel great an hour or so after class. Can I get used to this???? I have noticed a difference in my perception of how hot I am... haha... I'm not going to lie though, it hurts! But I am determined to do my own trials of battling the heat. They have a 30 day consecutive challenge that I want to build up to and do! I may be crazy, but I want to try... :) I feel like I can breathe fire now... but if I can do this, maybe it will lead to a more official trial or doctor trial, or maybe it will just be a personal gain for myself. But, I refuse to let EM dictate my life for me...I dont want to be afraid of heat anymore... So turn up the heat baby! Its time to burn!! I must be insane!

“A fire-breathing dragon lives in my garage and she is invisible.”

________________________________________________________________

MISSION IMPOSSIBLE!

2008-09-12T16:12:00.002-04:00

"No wonder experience is the best teacher. It has to teach us things we don’t want to learn. "

If you havent seen my ESPN piece online, please look it up and vote on it!! The more people that vote and give it a high rating ( dont vote if you dont like it please ....haha) the more people will watch it and maybe we can get it on the highest voted ones, with all the football stories on there... Lets puts something different on that list! Vote! Its free! :)

I am sorry for my delay in blogging and responding to everyone. I have received 345 emails now and I am trying to answer them all! Those of you who have responded, thank you. It made the whole Ironman experience easier to deal with and to find myself again. I will admit I was lost for a bit. I felt this insane need to attempt another Ironman right away. I was panicky, ancy, and slightly depressed. Here is something I have been striving for for 5 years plus, and now it is over and I didn't achieve it. For a bit, it was the only thing keeping me alive. So I freaked and started searching for a race, anything, to make me feel like me again. But in the madness, I found peace. I really just took some deep deep breaths and let myself feel all the emotions and not make any plans. I realized why I was so panicked...I had to look at the future! frankly, it is scary to imagine myself growing old with this pain. What next? I asked myself.

and here is what I came up with. I might be a bit masochistic in my goals, but I always strive to better myself and take on any challenge that scares the crap out of me!!!

1. Learn more about EM and sodium loss. It was one of the biggest reasons why I didnt finish. I have to take in way more sodium than the average person, so I need to practice.

2. Attack my biggest demon: HEAT. I decided on Bikram Yoga which is practiced in 110 degree room for 90 minutes!!! I am going to do it for 30 days to see if I can build up my heat/pain tolerance, or if I am just rubbish at heat and no way to make it better. I am on day number 2!! The first day I thought I was going to catch on fire. It was the Ironman deja vu, where I didnt know if I was going to puke or pass out. It was so hard to breathe and to stay upright. I could feel every cell in my body wanted to explode and/or run out of the room.... but when I was done, I felt soooooooooooooo good. day number 2 was just as bad!!!!!!!!!!!!! I have 10 panick attacks or so in those 90 minutes, and it is really hard to stretch and relax against being burned alive. The instructor said, Kate, relax your face, relax your body, let out all the tension... !!! You try jumping into a fire pit, and relax your face muscles!!! haha... I am determined to finish this experiment. Can a girl with EM, win against the fire demon...

3. Conquer the stairs and climbing hill issue... Climbing stairs for me is horrible!! it as just as bad as climbing a hill on my bike. My body just can't seem to handle it! Dan lives on the 14th floor in his building, so once a day, Im going to climb those flights to see if I can lower my time, and build up the burning stair tolerance.

4. Relax with the Ironman. Choose one in 2009 so you can learn more about your body and what extra it will take. I am thinking about Ironman UK because it is cool... :) and or if I can get in, Ironman Florida, Ironman Arizona... and if I get extremely lucky, win the lotto and go to Ironman Kona.. haha.. I will be an Ironwoman some day.... but I am ok with myself as I am, and where I am now. :)

on my list of goals:
a. Escape from Alcatraz triathlon... haha
b. Empire State building race where you climb 35 floors or so.
c. IRONMAN!! of course
d. some long ocean swim
e. Xterra triathlon

still building the list... if you have any challenging and weird races to suggest, Im all ears!

I am so glad to be me again! The happy, determined, hopeful girl ready to tackle the world!!

"Blessings are placed within our reach, but they are not placed within our hands. "

ESPN VIDEO!

2008-09-05T12:35:00.000-04:00

http://sports.espn.go.com/broadband/video/videopage?videoId=3569726

check out my espn feature online!!!

:)

"Today I gave it my all.... and what I would have kept, I lost forever."

2008-09-01T10:01:00.005-04:00

I have so much to say, and so many amazing responses from people who have sent me a message after seeing ESPN feature. I will respond to all of you and talk more about my journey when I arrive home later. Just to read all the responses made me cry and wish I could have finished. But nothing is ever promised to you... just because you want something so bad, doesn't make it automatically happen! You have to try and keep trying to achieve your goals... its never easy, and if it is, its not worth as much as if you really have to suffer to get something. And I live to fight another day. I still haven't given up, and will never surrender. Maybe someday soon I will be an Ironwoman, and maybe I will never be able to... but what matters most, is that I tried and I know I tried my best and thats all counts.

"Better to aspire to Greatness and fail, than to not challenge one's self at all, and succeed."

What do you do when you give it your all, and its not enough? If someone could have finished on pure determination alone it would have been me.

I pleaded, begged, yelled at, cursed, consoled, soothed, negotiated, and tried so hard to beat my body into submission. WHY????????? WHY CANT YOU STOP CRAMPING UP, WHY CAN'T YOU JUST DO THIS? PLEASE GOD PLEASE I WANT TO FINISH. I ran into problems at mile 50 on the bike. With the extreme heat, I lost all my salt... I was covered in white salt crystals and there was no way for my EM body to replace the salt no matter how much I took in. My whole body went into a huge charlie horse cramp... I got to a point where I couldn't even climb a hill because it would cause so much cramping. I hallucinated, I cried, and I kept going. The medical car stopped to see if I was ok, and every time I passed an ambulance I wanted so bad to stop. I saw so many people stopping that couldn't go anymore and they were normal!! I just couldn't go anymore. I thought I was dying on the bike. It was so hot and I could feel myself cooking on the inside. And the way EM works, the hotter you get, the more heat you produce, and even hotter you get. I just have no way to cool myself down and the bike course was hilly! WHen you can't bike, you walk.. and embarrassing but I walked some of the hills... but I refused to quit! I wanted to, but I didnt know how? I am not a quitter, and I don't know how to be? I told myself if I puke, I would stop. I got so nauseated, and delirious, I couldn't breathe, I couldn't think straight...and I was sure I was going into heat stroke. At one point, I was shivering and shaking, I'm assuming from heat exhaustion... and then I stopped sweating. I hadn't peed since the start of the race, and all my dreams of finishing were slipping away. When plan A doesn't work, you move to plan B, and so on and so on until I got to the plan: DON'T DIE. As I bike into what seemed like my death in hell, the question I pondered was, is completing the ironman worth my life??? When I woke up that morning when I was going to kill myself, and decided to do the IM, I secretly planned on doing the IM or dying in it...that no matter what, I would finish. I thought that if I died in the IM, at least I died in battle and not by my own hand. But something has changed in me, I don't want to die anymore... But I still didn't know how to stop on the bike even though they said I should. I pedalled on, and coasted as much as I can, my legs were so painful cramping that I couldn't pedal... I went from 19 mph, and down and down until 10 mph..!!! I got hit by a SUV's side view mirror while it was going at least 40ish and it smacked into my kidneys.... and it all went downhill from there, I also managed to get hit by another cyclist when I had been stopped on the side of the road for 5 min!!! Still dont know how that happened, but with the heat, it didn't surprise me. I reached mile 70 and I didn't think I could finish. The devil is laughing at me somewhere... that I even dared to try this IM in Kentucky in AUGUST@! Not to mention I had severe food poisoning at the beginning of the week and couldn't keep any liquids down, or food! THat couldn't have helped my IM situation. I pedalled on, and slowly as anything I had in me was leaving... It took everything I had, all my body had, all my determination, guts, anger, tried to finish... I just have to finish the bike... I AM NOT A QUITTER! But I wanted to prove them all wrong... I can't take it if they are right... and by some miracle, I strolled in on my bike at mile 112.... went into the changing tent.... and then the medical tent. They shoved potato chips and gatorade in me and said if I can get some salt maybe I can finish. We had a 17 hour + cutoff time so maybe if I can run I can finish. I stayed in the medical tent for 45 minutes before I finally stopped cramping enough to walk. SO I walked, and Dan was even willing to walk it with me!!!! More on that later. :) I tried, against all medical odds, against all of my body's tiredness, I looked at my watch, 20 min mile walk pace is not enough to make cutoff.... tried to run, wasn't going to happen, kept trying, kept trying.... at mile 6 on the run, my body had enough. I puked, and hallucinated again and saw a rabbit wiggle its ears at me, and I almost passed out. Saw the pretty stars and the tunnel and for a split second, thought I was dying and crossing over to the other side... and then the calm. I gave it everything I had, but it wasn't enough. There was no way for me to make the cutoff time... and I knew I couldn't do another step. I cried knowing I will have a DNF next to my name, but............. I do not have a DNF on my gravestone!

If you never try, you will never know how far you can go. Just because I didn't finish, doesn't mean I cant do an IM, just means if there is a next one I will do a cool weather one. But, maybe my body can't do one... BUT I TRIED. I WAS SO BRAVE to even step on that start line, knowing the extreme pain I was in for, knowing how hot is was going to be, knowing I might not finish and would need a miracle. Some days, pro's can't finish, normal people dont finish, and today, I couldn't finish.. but look at how far I had come!!!!

more pics to come..... this is me, wondering what the heck I was doing trying to an IRONMAN IN KENTUCKY IN AUGUST!!!!???????????????!????????? AT 5 ish in the morning, waiting for my doom...

will write more later.....tbc

Every man dies, but not every man truly lives

2008-08-28T13:27:00.002-04:00

Do not be dismayed at how long the journey will take. Instead, be thankful and enthusiastic about the one particular step you can take right now.

This is my last post before the Ironman. Sometimes it feels like I should write this blog as a will. haha :) I had a dream that right before the finish line I caught on fire and died right before I crossed. Maybe in a sense the dream is true. Im not just doing this to finish the race, but to prove I am still alive. EM tried to take all my dreams away, and I want them back!

My ESPN feature is going to be shown this Sunday at 11 am and 11 pm and Monday Morning on regular ESPN sportscenter. Kind of fitting to show it during the race actually!! Hopefully I will finish in time to see the 11 pm showing. :)

"There will come a point in the race, when you alone will need to decide. You will need to make a choice. Do you really want it? You will need to decide."

I will admit it.... IM SCARED OUT OF MY MIND... the thought of the unbearable pain Im going to have to endure for up to 17 hours blows my mind. But really, what else is new? I'm in pain constantly, whats a little more?? So on Sunday, from time to time, think of me, and maybe the Ironman angels will look after me and help me along.

All I can do, is do my best.... and hope my best is good enough.

future Ironwoman,
Kate

What we have is based upon moment-to-moment choices of what we do. In each of those moments we choose.We either take a risk and move toward what we want, or we play it safe and choose comfort. Most of the people, most of the time, choose comfort. In the end, people either have excuses or experiences; reasons or results; buts or brilliance.They either have what they wanted or they have a detailed list of all the rational reasons why not.

5 days and counting!

2008-08-25T16:05:00.004-04:00

"Excellence is trying more than others think is smart, risking more than others think is safe, dreaming more than others think is practical, and expecting more than what others think is possible."

Gasp! As I sit here, thinking, pondering, worrying, hoping... I decided to look up the water conditions of the IRONMAN in the Ohio River... How bad could it be? Its not the HUDSON !??

There have been reports of toxic algea, huge man eating catfish, sewer runnoff, and pirannas !! ?? haha They just pulled out this catfish last weekend!!! :) I don't care about catfish, ride em cowgirl! Lots of this stuff is athletes trying to scare us and intimidate us... I'm not worried about the swim... as much as the run!

By TIM PARADIS, AP Business Writer, 25 August 2008 LOUISVILLE, KY - The US Department of Wildlife and Fisheries has recenty reported the Ohio River is now home to a dangerous non-indiginous species of piranha. It is believed that the piranha were dumped out of someone's home aquarium and rapidly reproduced in the warm waters of the Ohio River during the summer months.A piranha is a member of a family of omnivorous freshwater fish which normally live in South American rivers. They are known for their sharp teeth and an aggressive appetite for meat. However, despite the negative media publicity, piranhas are not generally violent and have been known to be domesticated in home and office fish tanks.

The recent findings pose a special concern for the Loisiville area of the Ohio River becuase of the upcoming Ford Ironman competition to be held there next Sunday where participants will swim 2.4 miles in the Ohio River.

haha yeah right!!!! I may be blonde, but not that naive...or am i?? doesn't matter!!! If a big catfish tries to swallow me, Ill ride it bareback to the end of the swim...i am not worried about the toxic scum, because my body is probably more toxic than it is!!! since we dont really know where the disorder comes from...maybe its a cure??? haha...and as far as the pirannas which looks to be a hoax anyways... im meaner than a piranna if it tries to get in my way...and its bite will probably tickle me... !!! It reminds of me when I was a young girl, my first open water swim in a lake, and when I dove in, there were lots of fish biting my toes and trying to tag along for the ride! Someone had thrown in pretzels in my lane and apparently my toes looked good! haha

another picture of me sick from before... but hopeful and serious in thought.... which isn't very often if you know me!! at least the serious part...haha :) I just got a bad case of food poisoning and spent most of the night throwing up!!! Not good for my Ironman! Hopefully, my fever, and pukey puke will go away soon! Still hopeful...

"Life is not a matter of being dealt good cards, but of being able to play a poor hand well. "

To Be or Not to Be...that is the question...

2008-08-19T14:04:00.003-04:00

"Whenever you find the whole world against you, just turn around and lead the world."

I can't believe I have an IRONMAN in 11 days!!!???!!! There has been so many negative things in my life these past couple weeks that are trying to prevent me from doing the IRONMAN!! It makes me wonder if maybe it wasn't meant to be or something... and it even has me questioning if I can even do an IRONMAN. But then I think of all the crap I have been through over the past 5 years!!!

Barbara, who gives me those wonderful massages gave me this quote...

"Throw your heart over the fence..... and your horse will follow"..

which translates to... do the IRONMAN... and the solutions to your finances, negative problems will follow..
I have been waiting, training, hoping, dreaming for this ever since I first got diagnosed with EM! This is my chance to prove to everyone, my parents, the mayo doctors, my ex, the negative people in my life, and to all the people who told me it was impossible......and most of all .... to myself... that I can do it.... that I'm not a quitter! That I have literally been through hell and back and yet I'm still here. I AM A FIGHTER! EM may have taken so many things from me, but it can't take away ME... it can't kill my dreams! It can't have me..... I HAVE ERYTHROMELALGIA...BUT IT DOES NOT HAVE ME!!!

so when I approach that finish line... when all my struggles, hardships, pain, loss, despair, depression, hopelessness, and all my misery converge on that one line.... where that one line represents something so important to me.... life ... MY LIFE! I AM STILL ALIVE...AND I'M EXTRAORDINARY! I faced my fears, I conquered my demons, I am a winner... I may come in last place, but I'm so much more than that. I took something impossible and made it happen!!! This IRONMAN gave me my hope back, this IRONMAN gave me a reason to live and to help people... so when I cross that finish line... maybe just maybe.... I will be a normal girl...without EM, just trying to exist... to not be invisible...to not have an invisible disorder...to be loved for who I am, to be respected for doing something amazing, that maybe I will I will show people that I AM STILL HERE... and maybe... just maybe... I will be an IRONWOMAN ..... and someday if I ever have children, they will read my story and be proud...that I have a horrifying disorder that robs you of life...and yet show them how to live...to never give up, never stop hoping, and if you want something to go after it... no matter how impossible it may seem, you might surprise yourself. Its never to late to go after your dreams... ITS NEVER TOO LATE!!!

I am so much more than ERYTHROMELALGIA.... I AM SO MUCH MORE THAN THE EXCRUCIATING BURNING PAIN.... and I am proud to be me... and when I die, I will stand before my maker, proud, with no regrets...

I am Katherine A. Conklin, and I WAS HERE!!!!!!!!!!

"I will not last forever. But I am damn well going to know I have been here." George Sheehan.

There was never a genius without a tincture of madness.

2008-07-28T17:42:00.004-04:00

Life should NOT be a journey to the grave with the intention of arriving safely in an attractive and well preserved body, but rather to skid in sideways at the last minute, champagne in one hand, strawberries in the other, body thoroughly used up, totally worn out and screaming "WOO HOO - That was Fun!”

SAVE THE DATE!!! MY ESPN FEATURE HAS BEEN BUMPED DUE TO BRETT FARVE GETTING TRADED! Will know after the weekend when it will be on...but it has to be on before the IRONMAN August 31!!

Oh the joys of having Erythromelalgia.... I DISLOCATED MY ELBOW and DON'T KNOW HOW!! I apparently didn't feel it when it happened which means the injury wasn't enough pain to register on Kate's pain meter! It wasn't until it was swollen really big, bright red, and couldn't straighten my arm till I noticed something was wrong. FUN FUN! So the doctor popped it back into place, and laughed at me.... not really funny, but laughing is good! :) :) Laugh it up! I always seem to have strange injuries and freaky incidents happen to me... Keeps life interesting! He said that is the danger of having "double jointed" elbows and my disorder of only feeling extreme pain.... This will in no way affect my IRONMAN. The swelling is all gone, and just feel a little pain when I straighten my arm all the way. No worries!! Its just pain! :) The story of my life! haha.. As the Monty Pythons would say: "Always look on the bright side of death... doodoododdodobeedobedo..."

My guy Dan has gone home to the UK for 2 weeks and I miss him already! If you are reading this... get your butt back here asap!! I know you can hear me all the way over there.... and you know I have a big enough mouth and the pipes to scream at you from here!!!!!!!!!! Seriously...

Ironman is getting closer and closer!!! Below is a great poem/quote that I find to be true with my life! When you start something positive, other positive things will come to you...

Begin it Now
Until one is committed, there is hesitancy, the chance to draw back, always ineffectiveness. Concerning all acts of initiative (and creation), there is one elementary truth, the ignorance of which kills countless ideas and splendid plans:
That the moment one definitely commits oneself, then Providence moves too.

All sorts of things occur to help one that would never otherwise have occurred. A whole stream of events issues from the decision, raising in one's favour all manner of unforeseen incidents and meetings and material assistance, which no man could have dreamed would have come his way.
Whatever you can do, or dream you can, begin it.
Boldness has Genius, Power and Magic in it.
Begin it now.
- Goethe

5:59:19!!!!!! I NEED A SEATBELT FOR THAT KIND OF RIDE!

2008-07-14T13:26:00.022-04:00

"It's a great thing when you realize you still have the ability to surprise yourself"I JUST DID A HALF IRONMAN IN 5:59:19 !!!!!!!!!!!!!!!!!!!!! Can you believe it??? This whole weekend was an amazing experience for me. I was the motivational speaker for 2 events, and the race called out my courage once again, my tears, my pain, and my blood. I will do my best to describe everything that happened and include pictures to help tell my story. I am living proof that dreams come true and if you want something bad enough, you can achieve it. I think hell froze over for 1 day and that day was yesterday. Because I just did a very respectable time for a normal girl!!! I got 24th in my age group out of 69! I got a top 10 bike time as well. Not bad for a girl with Em and not bad for a girl in sandals!

On Friday morning, my aunt calls me to tell me I made the Front Page of the Providence Journal Newspaper! Once again Carolyn from the Journal wrote a very well written story about me, the race, and my struggle with EM.. THANK YOU CAROLYN!! I will post a link to it later...

Friday night starts out with the IRONMAN 70.3 welcome dinner where I am the motivational speaker. I was so excited to be able to share my story with everyone. Deb from Eident Sports that I met during the Marathon was there and she gave me this opportunity and helped with Media attention again. Deb, you are so awesome! Thank you again!

Here is a picture of me, Deb, and Mark the weather reporter from local NBC news who was also doing the race as well. We talked about the shark report at one of the beaches, the jellyfish incidents, and really made the NE girl want to go in the ocean! Those that know me, know that I am a freak attractor, so if a shark was to attack, then it would attack me. I prepared myself to walk out of the ocean with a jelly fish on my head, and a shark swallowing my leg just to have me shake both off and keep going! haha!

Here is a picture of me and Todd Saunders, from Eident Sports, who had contacted me after the marathon so I made sure to have my aunt take a reluctant picture of him to put him in my blog. :) He read my blog and passed it on to several people, and I couldn't have done all of this without people like him and Deb, and so many people that want to help!! Thanks Todd!!! and thanks to everyone with Eident, Amica, and Ironman !!!

I also met some fantastic people from Amica, who helped me get VIP passes and who sponsored the Ironman. They did such a great job at the race! Thanks for helping me and for spreading awareness for EM!

I met Susanne Navas, to the right, who is an amazing person. She is writing a book and has a clothing line and she gave me a tshirt!!! Check her out on her blog: http://trismilepacing.blogspot.com/ She also did the race and cheered me on during the run portion. I am so glad to have met her. She has a similar attitude to me to love yourself and to always have a smile on your face!! Some people come into your life for a reason, and I hope we can keep in touch!!

On Saturday morning I was given the opportunity to speak to a medical group who was having their annual convention. Established in 1939, American Medical Technologists (AMT) is a 40,000 member non-profit certifying agency for medical technologists, medical and dental assistants, medical lab technicians, phlebotomists, and other allied health professionals. This national convention in Providence will be AMT's 70th annual Educational Program and National Meeting. We expect attendance to be about 300-350 persons from all over the U.S. and some from overseas as well.

I spoke at their "Breakfast of Champions" and was thrilled to be able to share my story with medical professionals from around the country. Any chance to pass on EM in the medical profession is such an important thing in bringing awareness. I met some amazing people there and they gave me a huge welcome and were glad to have heard my story. Thank you so much for your support! Some of them were teachers and said they were going to have their students do a paper on EM. Thank you from the bottom of my heart.

Its funny when I tell people that I used to be shy. I would go blank when I would go up to a podium. I didn't talk much as a kid either. Now I guess I am making up for it. haha!! I have so much passion for what I am doing, that the words flow from my heart and soul. I love life and I love what I'm doing and want to spread my message to everyone! Be who you are... Do what you love..... Make a difference... CHANGE THE WORLD.

After the wonderful breakfast, I pick up Dan from the train station! He actually came to my race to cheer me on!!! How cool is that??? So I drag him along with me to check in, and to turn in our run gear, and to check in my bike at the beach!! I gave him a quick tour of R.I. on our way...haha

After bike drop off we went down the beach to see the boats. We met my aunt, uncle, and Nana for dinner at Champlins on the beach where my family has always gone. I never lived in R.I. but when my dad was stationed in MA when I was a little kid, we would come to R.I. and get chowder and clam cakes and that was my prerace dinner!!! and some Gregs Death by Chocolate cake.... dont care if that is not traditional pre race dinner, but IT WORKED FOR ME!!! haha.. I LOVE THE BEACH.... so different than Nebraska!!!! haha...

In Providence, some nights they have what is called Water Fire. They have these fire pits in the river where they light them occasionally and is supposed to be pretty. I was told it was to be lit, but was very disappointed that it wasnt. I was intrigued to see the fire in the water, because that is how I feel when I swim. I am drawn to fire now...maybe to try and understand it... or maybe because I feel like I am a walking fire ball. So I found a picture online below... Someday I will burn as bright and as beautiful as this!!!!

"Accept the challenges, so that you may feel the exhilaration of Victory"

I decide to get in the ocean and go for a small warm up swim to try and prevent the drowning of the cold water constricting my lungs... It felt good to my feet because the wetsuit is SO HOT.... i hate it! it takes me a few minutes to be able to put my face under... I was hoping that it would help in my race. I was trying to wake up my body since I had to get up at 330 am to drive and get to the start by 5 am even though my heat didnt start until 630. Oh the wonderful part of any race.... the beforehand... when you wonder how you will do today. Will I finish? Will this be the day my body finally gives in and can't take it anymore??? Will I be able to push against the extreme pain to keep going? Will I let everyone down? Will I let myself down? Will I be the strong person I know I am? Will I be the girl with EM? Will I .... live ?

Why, oh why didn't I take the blue pill?... haha! i love the movie Matrix...But that is how I felt during the swim! Here we go again... choking, drowning, struggling, crying, puking, gasping. It felt like deja vu from the BlackBear half IM. Sometimes I feel tired, and I feel fragile. It is hard enough to endure the daily pain of EM and yet why do I keep testing myself and adding more pain? Why can't I just have 1 race where everything seems to go well and I'm not going against all odds. Why can't I be fast and do a time where people would respect that time and not give me that look? The answer of course is always going to be: I HAVE ERYTHROMELALGIA... my path in life is not meant to be easy. It will always be a struggle for me. It will always involve ridiculous amounts of agonizing pain. The swim portion was horrible!

It must be the wetsuit causing extreme heat and the freezing cold temperatures hitting my face and causing my lungs to constrict. I couldn't breathe again, and the waves were more like swells and they kept crashing into my face. I still don't understand why I have such a hard time at the beginning of these swims. I can't get any air into my lungs! ??? They just don't seem to work and I almost quit again. I wished for a shark to come and swallow me whole, or for a big whale to eat me alive and then spit me back out at the finish line. I hope for Ironman Kentucky that the water will be warm enough so I don't even need a wetsuit and maybe I will have an easier time? or maybe I should swim in a sleeveless ? Something has to change because that is two times in a row this has happened and I even got in the water early to try and get used to the water and that didn't help. My worst swim time ever: 37 minutes!!! blech that is embarrasing! But for a second there I thought I was going to just sink to the bottom and drown. Wouldn't be such a bad way to die. Finally I get out of the water and out of that horrible wetsuit. :)

I get on my bike and prepare myself for a horribly hilly bike ride. I start out and I am passing people left and right. I am actually in my big ring by choice this time. I couldn't figure out why and how I am passing people... not just passing...flying by them like they are standing still ??? Weird. I kept waiting for these huge hills from the bike profile and some other competitors. The first half of the race was basically all uphill... in fact basically to mile 46 or so. The one problem of doing a point to point race instead of a loop... no guarantee of a downhill!!! The first 5 miles I did in 14 minutes... the first 20 miles: 54 minutes!!!! ????!!! That is faster than 20 mph ... on hills!!? The funny thing is... I either have great days or I have horrible days. Not much in between ! BUT TODAY I HAD A FANTASTIC BIKE DAY. My legs were strong, my body strong. The hills burned like usual, but for some reason today, I could really push the pace. Compared to the stupid black bear race were I did the bike portion from hell in 4 hours, this time I did it in 2:40:28, plus 5 minutes of transition... !! 1 hour and 15 minutes faster than last time! What a difference an unbroken bike makes! :) haha! I ended up 10th on the bike. Dan said he didn't expect to see me at transition so quickly..... NEITHER DID I! THAT BIKE ROCKED! It felt short...like I could go forever.. To Maggie in Pink, nothing personal, but when I tried to pass you and you purposely blocked me and I almost crashed..... I hunted you down and when I passed you...it was an awesome feeling! woohoo! To the girl who I tried to pass and kept saying on your left and you kept schooching left, and almost crashed.... when someone says on your left...doesnt mean pull left! haha! The roads were absolutely horrid! I needed a seat belt for this kind of ride!!!! OR A FULL SUSPENSION ON MY TRI BIKE... pot holes all over the place, especially the last mile...rattle rattle rattle.. I know I am not alone in that complaint. It is a miracle I didn't get a flat. It is a miracle I didn't get 20 flats... but for once... I had a great race for a normal girl....and that makes me so proud that all my hard work, all my tears and blood, and all my agonizing pain and struggle... finally paid off. I work really hard, I push through so much pain, and finally it works out right. :)

I still can't believe I went that fast on hills!!! I don't think Dan or my friends can believe it either! I know I had it in me... I know I can bike faster than I have been doing... and I finally proved it! YAY!

now the run... I dropped 30 minutes off my time from Black Bear. I ran it in 2:28...slow for most peoples standards.. but considering the heat! the huge notorious College hill that should be called the WALL.. that we had to run up TWICE!!!!! FRANKLY THAT WAS JUST MEAN... it was a half of mile from transition and then you hit it... straight up a wall.. shuffle shuffle shuffle.. just plain mean. :) But I thought to myself, IF IT IS HURTING ME, IT HAS TO BE KILLING THEM!!! :) I had cramps in my stomach the whole first lap and finally the second lap it went away. I was looking at my time and it dawned on me that if I push it, I can break 6 hours... ARE YOU KIDDING ME WITH THAT???? SERIOUSLY??? HOW DID THAT HAPPEN???? hmmmmmm so I kept trotting on... It was so hot, but the water sponges helped a little... the extreme bursts of wind somewhat helped and somewhat hindered. Going down that wall was not fun for me in sandals!!! You don't have anything to stop your feet from ramming into the ground or to even keep your sandals on!!! Oh how fun it is to run in sandals!!! NOT... On my second lap, I started to cramp up but I kept looking at my watch and trying to do the math... Is this possible?? I had no bandaids on my feet and I could feel the stickiness of the blood on the bottom of my feet and in between my toes... Deja vu from the marathon! But, I barely noticed the extra pain... maybe I have gotten used to it??? Or maybe I am going to hurt during the IRONMAN!!! I had lots of spectators cheering me on, some even knew who I was! There was a guy at the turnaround on the other end that was awesome!!! You rock! He said I was awesome and cheered me on. There was a lady in a black shirt who hooted and hollered for me each time I passed her and that is how you should cheer!!! Kate style!! Dan finaly saw me run.... I saw him at the turnaround...and I am not a pretty runner!!!! haha! But I dont care! I had to sprint it home.. sprint for me at that time was more like limping fast...but I did it!!! I DID IT!!! WOOOOHOOO! I BROKE 6 HOURS!!!!! I CAN'T BELIEVE THAT! I ACTUALLY DID GOOD AT A RACE!! I finally showed myself how strong I really am, and that no matter how bad it hurts, that I can push through...and on some rare days, I can be as fast as a normal girl... And on July 13, 2008 I finished a Half Ironman in 5:59!!!!! and I am so proud! I finished 24/69!!!!

CONKLIN, KATE 28/10/24 00:37:06 02:45:41 02:28:51 05:59:18

"It is not the critic who counts: not the man who points out how the strong man stumbles or where the doer of deeds could have done better. The credit belongs to the man who is actually in the arena, whose face is marred by dust and sweat and blood, who strives valiantly, who errs and comes up short again and again, because there is no effort without error or shortcoming, but who knows the great enthusiasms, the great devotions, who spends himself for a worthy cause; who, at the best, knows, in the end, the triumph of high achievement, and who, at the worst, if he fails, at least he fails while daring greatly, so that his place shall never be with those cold and timid souls who knew neither victory nor defeat."

I didn't know I was lost...until I was found

2008-07-05T15:11:00.009-04:00

"Pain is to pleasure as disco is to punk. You need to live through one to fully appreciate the other."

A picture of all of us on our bike tour! Some were serious riders, others were serious about doing anything else than biking! haha.... Hence the nature of a Winery Bike Tour... you attract some of both! :) It was a great group and we had lots of fun!

Here is a picture of me, Pablo my friend the bike tour guide, and my guy Dan. :)

We went on a wine bike tour up in the finger lakes at Skanateles, NY which is a 5 hour road trip from NYC. Dan and I rented a car for a fun road trip! Are we nearly there yet??????? was a huge theme of the trip. Why does the trip there always go faster than the trip back???? haha... Anyway, Dan took apart the bikes and managed to fit them in a car. I need a bike manual for dummies! My french bike has an attitude as well. It b*tches and moans, drops it chains all the times, refuses to brake, clunks and just doesn't like to climb hills either! What an attitude!

We finally get to the bed and breakfast from h-ll! The lady that ran it was mean and very strict. I could tell that she hated me from the get go.... she needs a sense of humor! This is a fun trip not a prison! I still managed to laugh up a storm and shocked her socks off Im sure...ha ha ha

“Fire is never a gentle master"

Oh I have found out for sure that Kate and alcohol do not mix! I had one drink and tried to bike and I thought I was going to die! I swore then and there I would never drink again. My legs hurt so bad!!! I need to look into this oxygen deprivation theory and EM. But here is a horrible pic of Kate and 1 drink: you think I laugh a lot now, just see me after one drink! Giggle and nonstop chatter! Here is a lesson for all: DON'T DRINK AND BIKE... NOT EVEN 1 GLASS. You will end up hurting yourself! or laughing hysterically!
I did have lots of fun on the downhills........weeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeee. Speedracer Kate! I loved it! I went so fast that I even chipped my tooth because of it! I thought I was going to get a speeding ticket from the cop as I went flying past him at the speed of light... haha Do they have Ironmans that are entirely downhill?????????????? ha ha ya right!

We were the only 2 people to make it to the Americana Winery, the best winery in the area, and I tasted several wines and some fudge! I'm not a huge wine drinker, it makes me very hot, but it was very good and the fudge was even better! I love it! Everyone else didn't make it as far as we did, because Americana Winery was far from where we parked and they were too busy wine tasting at the closer ones! There was also a cherry picking festival there, and we tried our hand and picking the cherries. The only ones that weren't picked over were the sour ones, so we didn't get any sweet ones because of the bugs...ew.... not a big bug fan! Especially caterpillars! I need Dan as a human shield for those!

sorry, I know I told you Dan that I wouldn't put up lots of pictures of you on the blog... but I cant help it! You look so good in these pics... I on the otherhand look horrible with a helmet on! On Saturday we did a horribly hilly mean bike ride on Route 2. The only 2 people to finish the 75 miles of pure torture was a guy named Ronnie, and my guy Dan! Dan is an amazing climber.... I wish I could keep up with him.

I have such a hard time on the hills or I should say UPHILLS. I don't understand why? I need to find out the oxygen theory of EM and see if that helps me understand. It makes sense that I am not getting enough oxygen because of the constriction and dilation of the arteries. The last huge hill that I climbed I blacked out because I was too stubborn to stop. Dan was with me and kept saying to stop and get your breath back. I was weezing and gasping, but my lungs weren't working!! It must be like people with no lung function feel! I just couldn't get any air.. and I kept pushing...and pushing....determined to keep going no matter how bad I felt. It was ridiculous!! Why must I always have to push through extreme pain?? These hills seem to go on for miles!

“We EM sufferers all live in a house on fire, no fire department to call; no way out, just the upstairs window to look out of while the fire burns the house down with us trapped, locked in it"
I kept pushing and gasping , I saw stars, and eventually a tunnel... and then blackness. Luckily I put my foot down so I didn't fall off my bike. I felt like I had just sucked in fire and was trying to breathe! I am too stubborn sometimes to admit that I can't do something!!! Why??? Why can't I do this? I don't want EM, I don't want this pain! I want to do things that normal people do. It makes me so upset! I just want one race where I do good at and not have to triumph over huge unbelievable amounts of pain! Is that too much to ask for? I always have to sacrifice myself for the greater good.... but it makes me tired.... and scared for the Ironman!

Can my EM burning body do an IRONMAN????? All I need is an O2 mask and motor on my bike and I would be set!!!! SERIOUSLY!! haha... We know what would happen if I carried around an O2 tank and my hot EM body would definitely start a spark... and whoooooooosh I would burn bright for sure.

“Among the notable things about fire is that it also requires oxygen to burn - exactly like its enemy, life. Thereby are life and flames so often compared."

In Dreams and in Love there are no Impossibilities!

2008-06-19T10:49:00.009-04:00

The vote is in and I didn't not win the grand prize trip to Ironman Lake Placid. I will admit, it hurt for a bit. Whenever you hope for something, and you don't get it, it can be disappointing. That is what life is all about. You can't control everything in life, and you can't protect yourself by not hoping or dreaming. You will miss out on so many things! And you are never going to win if you don't try! So Ironman Kentucky here I come. Apparently I am to battle the devil again and see if I can do an IRONMAN in extreme heat in AUGUST in Kentucky!!!! Anyone with EM knows what this means for me... but I am up for the challenge!

"Sometimes there's so much beauty in the world I feel like I can't take it, like my heart's going to cave in."

I have talked a lot about the physical pain from Erythromelalgia, but I haven't talked much about emotional pain. I know I have touched on suicide, but there are other aspects of emotional pain. I have found that when one is in extreme pain like I am, it makes me sensitive to other pain and anguish. Being in extreme physical pain also allows me to feel incredible pleasure, so it would make sense that the emotional spectrum has also been increased. I feel horrible and absolute despair, and incredible happiness as well. It has increased all aspects of my life. Instead of grays, I see incredible bright hues and pitch blackness as well.

I have so much love burning in my veins that had been going to waste. I find myself loving all my amazing friends and able to give out love..... but it is hard for me to let love in. I had frozen my heart to protect it from the blazing fire. Friendship love is so much deeper than it used to be before I got sick. I used to have a lot of shallow friends or "sunshine" friends that I lost when I got EM. But now, I have so many amazing friends that I love and will always have a place in my heart... But I had frozen my heart to romantic love.

When you are in such horrible pain, any extra pain such as mental anguish just makes it hurt so much more, and susceptible to insane amounts of aching. I am more vulnerable to extreme feelings than the average person. Some days the pain is too much to bear, and I feel like my heart will be shattered into a million pieces and beyond repair.

If I let a man love me, and he hurts me like has been done so many times before, it scares me. I have been cheated on before, and emotionally abused... and the thought of that happening with EM scares me! I have such a passionate heart and some can take advantage of it and try to stifle me ... I want to find a man that loves me for who I am, and loves me even though I have EM. I want a man that doesn't compare me negatively to some other girl, and who doesn't purposely make me jealous. I don't want to have to fight over a man, its too complicated, I want a man that would feel like its no contest between any other girl... a man that loves me as much as I love him. Isn't that what everyone wants?? But how can i find it if my heart is hiding and I run away from any man that I could possibly love? Yes I have EM, by why should I let my heart be cremated?? Pain is just pain, and pain caused by love hurts so much..... BUT IT FEELS SO GOOD TOO.

I didn't realize what I had done until I almost pushed a man away. I almost lost out because of my scared frozen heart. But what I had done instead of protecting myself, I was really missing out on a whole other amazing spectrum of feelings. I am seeing a guy now that makes me so incredibly happy!! I walk down the street with a huge smile on my face. Who knows what the future holds, but its not about that, its about the present... its right now. He has shown me a different perspective... from the top of the world...ok the top of the rock:

Its different to look from the top down. Central park looks so beautiful and peaceful.

EM makes you look at the world from the dark firey hole below where all the bright colors look so far away. When you look from the top down, it is scary, because you realize how far you can fall down. But, I have been at the very bottom and when you are there, you can only go up and things can only get better! So as I have been climbing up out of the hole, each step is prettier and amazing and I feel my heart aching from all the beauty in this world that I have never noticed before. Before the pain, I was always in a hurry... now I want it to slow down! Sometimes I feel like I don't have enough time left in this life to enjoy it all. I feel like I'm going to miss out and I don't want to!

"Sometimes your nearness takes my breath away; and all the things I want to say can find no voice. Then, in silence, I can only hope my eyes will speak my heart."

So I'm going to melt my frozen heart and open myself up. There may be more hurt, and there may be more love... but I'm not going to be afraid of it anymore... I don't want to miss out. I have taken a leap of faith so many times, and it hasn't let me down. I am ready for what ever happens with open arms...not just the physical, mental, but the emotional as well. I have so much love to give and you never know when you might not have the chance anymore.

Now the question is...will all this scare him away????? haha!

"The best and most beautiful things in the world cannot be seen or even touched. They must be felt with the heart."--Helen Keller

"From nothing comes nothing. Better to have pain than paralysis!"

2008-06-13T19:19:00.009-04:00

The secret of success is learning how to use pain and pleasure instead of having pain and pleasure use you. If you do that, you're in control of your life. If you don't, life controls you."

ESPN came again this morning to do some more taping for the feature! They are such a fun bunch! They totally crack me up! I'm going to miss those guys. If you guys are reading this: YOU ROCK! You better keep in touch with me! :)

They taped some more of my bashful feet... It is still weird because my feet are one of the most vulnerable parts of my body and when you tape them it feels like you are taping my pain and I feel naked! I know that sounds weird but it is true for me. That is why it is hard for me to let anyone touch my feet as well.... it doesn't hurts more, in fact it can feel amazing because of all the heightened sensation, but really you are touching my heart and soul. There are only a few people in this world that I would let touch my feet. So if you do ever touch my feet...count yourself lucky...because you just touched my soul.

( and please no soul vs sole jokes) haha! But lucky for me, not too many people want to touch feet. :)

People have requested some more shots of my feet ...? Funny thing is...wherever I go somewhere new, or finish something hard, I take a picture of my feet! These are my feet!! This is where the pain hurts the most, where I am most vulnerable... my feet have been through a lot! People with feet fetishes might not want to page down through my blog... no pretty feet pics!

This is from Nebraska in a few feet of snow. I could walk around barefoot all day in the snow! It would feel so good! But not recommended because I could lose my toes to frostbite...
This is my feet at the purple sand beach in Big Sur California! It was actually cold that day! But my feet loved the cold ocean!

Here is a shot of my feet all swollen with EM! The reason why it is on a green background because the first Christmas after being diagnosed with EM, I made a Christmas Card with this picture... my parents didn't think it was funny!! BUT I DID! This is a bloody shot of my feet after the above picture where my feet swelled and pushed out my toenails that cut into my skin.
I felt bad for the ESPN camera guys... wonder how often they follow someone walking and running where they just focus on feet??????? There was one point when the producer said to do a "stoic" shot...haha!! My feet refused ! haha but he wanted one of my face.

Definition of stoic: "one apparently or professedly indifferent to pleasure or pain

That was interesting for me. I had such a hard time! My lips and my smile muscles were quivering and shaking uncontrollably because I wanted to smile and laugh so bad it hurt! I told him that I would need to laugh for at least 10 minutes staight after that torture. Hmmm Im not sure I'm the best person for stoic... I feel both pleasure and pain at the same time almost all of the time. In fact the more pain I am in...the more I laugh. It is probably a fine line between the two similar to love and hate. If you are indifferent towards someone, you don't have any feeling whatsoever for them....and that is when you are really over someone such as your ex when you don't care anymore. If you still hate them, then you still have feelings for them. But in regards to indifference to pleasure and pain... I have intense feeling for both of them... I think the only way someone can truly be stoic is if they have given up on life or depressed or dead.

Stoicism is school of philosophy founded by Zeno, who taught that people should be free from passion, unmoved by joy or grief, and submit without complaint to unavoidable necessity. WHY WOULD YOU WANT TO LIVE LIKE THIS??????

Here is a shot of me at one of my lowest points... when I didn't want to be alive... 2005

this is me being content and starting to love myself for who I am and accepting EM 2006

This is me with the I don't care what you say, Im going to do an IRONMAN... you might not be able to see it but I have a red splotchy face, and I've got the kiss my EM butt look! I used to do Muay Thai Kickboxing, so don't mess with me!! haha! 2007

I love to feel it all! I find now since have EM, I feel so much more. I feel every sensation in all parts of my body and I know where every part of my body is... I feel every sensation at least 100 times more than I used to before EM. I feel so much pain, and I feel so much pleasure and I love it all!!! Sometimes I feel that I am the luckiest girl in the world because I feel so many amazing things that most people don't even feel a fraction of. Why would you want to live without passion??????? You might as well be dead! So wake up and find something that makes you feel alive!!!!! So i'm going to live my life as a anti-stoic !!! who else wants to join me???

HEAT SEEKING MISSILE

2008-06-06T10:51:00.014-04:00

"Set your life on fire. Seek those who fan your flames."~Rumi

Oh the heat wave has hit New York City! What makes it even worse is that my AC doesn't work very well!!!! It is so hard to sleep when you are hot with EM! I kept taking cool showers and laying under the fan which would only work for a little bit. I can feel my blood boiling and my brain sizzling... This is your brain..... this is your brain with Erythromelalgia in temperatures over 90 degrees..... ANY QUESTIONS????

When I got up this morning I was crying and in such misery that it was hard to go to work... at least work has ac! But it hurt to just move. My big kitty is dying along with me and he just lays on the ground flat and cries. I opened the fridge this morning and he tried to climb in it! If I could fit in the fridge I would sleep in it! I would just have to make sure that it is not sealed. haha! Although I can think of worse ways to die... Its on really hot days like today that I feel the most depressed. It says its 98 degrees with humidity and tomorrow is supposed to be hot too! Yippee!

So after my Monday spin class, I decided to try and conquer the heat demon... I went running for 2 hours in this heat!!! I was running like a bunny with its tail on fire... it was so bloody hot I thought I was going to spontaneous combust!! BUT I DID IT!! Take that heat demon... you are not the boss of me!!! although you can bring me to my knees and make me cry.. but I have to get used to this in case the Ironman is this hot!! So PLEASE TAKE MERCY ON ME and vote for me so I can go to Lake Placid instead of Kentucky in August!!!!! haha. I also went biking on Saturday during this extreme heat for a few hours with some friends. It was great until I overheated at the very end. I need to figure out how to control this!

I have been thinking lately about what I would look like to a thermal imaging camera that measures heat... I wonder if there is a study to see what an EM person looks like in infared versus a normal person??? I bet we would look BRIGHT RED there too!!

Firefighters use it to detect flames that have not been put out... I bet they would hose me down if they saw me in the heat detecting camera! The military has put it to use too in their missiles and night fights too... Missiles which use infrared seeking are often referred to as "heat-seekers", since infrared (IR) is just below the visible spectrum of light in frequency and is radiated strongly by hot bodies. Many objects such as people, vehicle engines and aircraft generate and retain heat, and as such, are especially visible in the infra-red wavelengths of light compared to objects in the background. So in other words... I should look out for missiles coming my way!
In case there is an attack on earth from aliens who hunt by detecting heat... EM people would be the first to get eaten...... but on a good note: if there is an ice age that freezes everything... we would be set with our own personal heaters! Maybe there will be a benefit to having EM someday... ? You never know!

I have tried several alternative medicines/therapies to try and help with the pain... One that I am trying currently gives me what I call the "inner chill" and I LOVE IT! It is only temporary so far, but it makes me cold on the inside which I haven't felt for a long time! Yes, my skin might get cold in the winter, but I'm always burning on the inside, on my feet, hands, face... but after a LYMPHATIC DRAINAGE MASSAGE... I get the inner chill for a few hours afterwards! I LOVE IT! I COULD GET ADDICTED TO IT! A great massage therapist named Barbara has been working on me using this technique. It is a gentle form of massage which stimulates the body’s lymphatic system, allowing it to naturally circulate fluids and increase the body’s metabolism and immune system. The lymphatic system can become blocked, causing fluids and toxins to build up with chronic pain. She says it can be used with people that are in chronic pain and help drain out the pain metabolites that are left in our bodies. I don't know why it gives me the chills.... and frankly, I DONT CARE! I love it and wish it could last forever... It is not like a traditional massage with heat, oil or pressure or anything. I don't know if it is just helpful for me? or maybe others with EM? It doesn't get rid of the pain entirely but it chills me out! I LOVE IT! THANK YOU BARBARA!

I have tried acupuncture.....ITS NOT FOR ME.... the needle pricks didn't bother me pain wise, but the holes in my dialated feet did! As you know from a below post, the little pricks turned into huge bleeding holes in my feet and I would wake up with my feet soaked in blood and they wouldnt heal! I hope it worked for someone else, but it was a nightmare for me! I tried acupressure but since insurance didn't cover it, it was too expensive for no real apparent result.

I have experienced a lot of hair loss. My hair would come out in chunks! But as long as I get enough vitamin D from the sun, the hair loss has gone down. It still seems like a bit.... like a cat sheding, but much better than before. So any kind of vitamin D seems to help me!

I used to have a problem where I couldn't sweat! It was so hard to try and work out if I couldn't sweat because my body couldn't cool itself... but since I have been exercising, I have gotten my sweat back and it is huge! I sweat way more than a normal person does, maybe because I am hotter than a normal person??? But, I also sweat A TON OF SALT! I am guessing it has something to do with the sodium receiver channel gene, but when I exercise, I have to make sure I take in a ton of electrolytes such as salt, and potassium or I will get charlie horse cramps!
(warning bodily functions discussion below) and yes, I have tried a colonic or

hydrocolontherapy... supposedly toxins can build up in your intestines and cause all sorts of body problems and systems... so I figured... what do I have to lose??? EXCEPT POO... it was highly uncomfy but a very expensive way to go to the bathroom. I tried it for several sessions to make sure it didn't help the pain, but it didnt. No real surprise since I am able to go to the bathroom by myself. haha! But I thought it would be worth a shot???!?!? You would be surprised at what you would try for a little pain relief!!!! This was the only thing that happened after:

haha!

I am sure that some day I will spontaneous combust and burst into this bright beautiful fire that everyone can see. Until then, I will just keep pushing myself to the limits, trying new experiences, feeling everything along the way. There will be lots and lots of pain, and lots and lots of happiness. There will be sorrow, and joy, defeat, and strength. But, I am ready for it with open arms... ready for all life has to offer. And if the devil is trying to kill me with his heat... then bring it!!! I can fight fire with fire and love! Feel it, feel all of it, not just the joy, FEEL ALL OF IT EVEN IF IT HURTS.. because that is what sets you free. Maybe someday hell will freeze over because of me!!!!

Going to go crawl into my freezer now to get ready for 100 degrees tomorrow!

I need to do a rain dance... but unfortunetely all I have is a fire dance...

"If you ever catch on fire, try to avoid seeing yourself in the mirror, because I bet that's what really throws you into a panic. " ~Jack Handey

If you are going through hell.... keep going because....

2008-06-01T20:52:00.006-04:00

YOU MIGHT COME OUT THE OTHER SIDE A HALF IRONWOMAN!!!

"To truly laugh, you must be able to take your pain and play with it." Charlie Chaplin

and boy was I laughing! When you hear all the crap that happened to me during the race, you will be laughing too! Once again, it was ridiculous... this time technical issues. I will start from the beginning but I am not telling my story as an excuse...but to share my experience. I almost quit 10 times or so, and if I had quit then they would be excuses... but I am not a quitter!!!!!! There were 23 people that did not finish... and I AM PROUD TO NOT HAVE DNF NEXT TO MY NAME...

somewhere in the mountains there is a bear laughing at me... Whether it is Bear mountain, or Black Bear Half Ironman....He challenged me... tested me... called out my courage... and dared me...grrrrrrrrrrrrrrrrr! But now we have an understanding. He put me to the test, and I did it!

My Half Ironman time was: 7:44:15 and I was last in my age group!!! BUT I DONT CARE! I still can't believe I finished this race...

It all started back in NYC where I had rental car problems that almost prevented me from even going to the race.. and hotel/camping issues. I will not bore you with these details... but I should have taken it as a sign TO STAY HOME OR TURN AROUND AND GO BACK HOME!!!!!!

I arrive at the race early in the morning and I was heat 8 and my heat didnt start until after 8 am!!! I put my wetsuit on WAY TOO EARLY... a wetsuit is an EM sufferer ENEMY... it was so hot it was ridiculous! then finally we got in the water and started our heat.... When I get in the water and put my head under... IT WAS FREEZING COLD and it constricted all the arteries/veins to my lungs and I literally could not breathe... I laid on my back and gasped for air but it just wasnt working. I laid there for 8 minutes or so thinking for sure I was going to drown. I AM A GOOD SWIMMER! I USUALLY COME OUT OF THE WATER FIRST! This was the first swim race that I have ever wanted to quit. I almost quit right there... it was horrible... then to make matters worse: I THREW UP 3 TIMES...not sure why..maybe I inhaled lake water? I was struggling just to breathe and stay afloat...if it wasnt for the buoyancy from the wetsuit you might have found me at the bottom of the lake... I laid on my back thinking that this is what emphasema must feel like... glad I don't smoke! I kind of expected to drown and all I could think about was how I wish I did not have EM so this wouldnt happen to me. EM sufferers know what even a slight temperature change will do.... Finally.... I look at my watch and 10 minutes has gone by and my lungs started to work... but then I STARTED TO OVER HEAT... THE COLD TRIGGERED A HUGE HEAT PRODUCTION and then I had trouble breathing once again this time due to a panic attack from being on fire... HOT SO HOT!

Finally, I finished the swim....never been so glad to step on land... i looked at my watch and it said 35 minutes and I was surprised about that cause I figured I would be at least 45...so if you subtract the 10 minutes... I would have had a kickass swim time like normal. At this point I had a bad feeling...then when I came to transition... MY BIKE WAS ON THE GROUND DERAILER SIDE DOWN... MY SEAT WAS BENT AND TWISTED TO A SIDE.... and I'm thinking... great... what else is wrong with my bike??? so i managed to fix the seat and took a really long transition to do it...

So I get on the course and it felt like I was pushing through mud and I look down and IM IN THE BIG FRONT GEAR... so i try to shift down because this bike course IS VERY VERY VERY HILLY.... AND I CANT SHIFT DOWN!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! CLUNK CLUNK CLICK CLICK CLUNK I CANT SHIFT DOWN FROM MY LARGE HEAVY RING THAT YOU USE DURING THE DOWNHILLS OR FLATS... NOT STEEP LONG HILLS LIKE THIS COURSE.......

ARE YOU KIDDING ME WITH THIS???????????? SERIOUSLY???????????? HAHA! I GUESS I NEEDED AN EXTRA CHALLENGE??!?!??!?!?!? for those that don't bike and have no idea what that means.. if you were to ask anyone on that course if they could/would bike that course in big gear and they would say NO FRICKIN WAY!! it could make a grown man cry! Not to mention...I HAVE EM AND CLIMBING HILLS BURNS!!!!! AND NOW I HAVE TO DO IT ON HIGH GEAR WHICH IS REALLY HARD TO DO AND AN EXTRA KICK/BURN TO THE LEGS.... I try to manually do it and couldn't do it....I am no bike mechanic... ? humpphhhfhfffff.. so what do I do??? at this point I was laughing hysterically.... do I quit?? do i attempt to try??? I think most people at this point would probably quit... and most athletes that win races would probably quit because I had to give up and idea of a reasonable time... So I told myself to try and make 1 out of the 2 loops and if you can't do it, at any time you can quit.... I saw a couple people quit on the first loop, and lots and lots of people moaning at how hard this course was... AND I DID THE WHOLE THING IN MY BIG HORRIBLE GEAR!!!!!!!!!!!!!!!!!!!!! I DID IT!!! I CAN'T BELIEVE I JUST DID THAT.... there were huge hills... unbelievable hills and torture hills... but there were FAST DOWNHILLS... dont know why I am so good at downhills???? I fly by people on the downhills...I felt like speed racer!!! weeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeee! I LOVED IT! people were commenting me on the downhill... "girl, dont you have any fear???"" UH NO!!! WEEEEEEEEEEEEEEEEEEEEEEEEE! THAT WAS SO MUCH FUN.... I WAS PASSING CARS ON SOME OF THE DOWNHILLS IN A 45 MPH ROAD... the guy at the beginning was warning us about the downhills how we could easily do 50 mph or more... AND I WAS DOING IT..... WOW THAT WAS AWESOME! You can call me Speedyracer Kate!! then everyone would comment how horrible i was at climbing and when I would tell them my gears were broken, they would curse and say no way they would do it... haha!!!
my bike time was 1 hour slower than what I was expecting/wanting to do. 3:58 ... BLECH THAT IS EMBARRASSING! but hey.... I did it! Woohoo!! There was a really really steep hill during the last part of the bike....the guy was yelling at me to gear down gear down.... its a huge hill girl, you are not gonna make it in your big gear! haha! duh...really???? I managed to get most of the way up .. there were a few girls walking their bike... but at the top... YES I HAD TO WALK MY BIKE... and I HATED IT... i could have done it in small gear, I could have done it in big gear and fried my legs...but I still have to run 13 miles!

So I finished the bike... man was I glad to be off the bike!!! I took my time at transition because it really didnt matter at this point... it was more important to make sure I get enough fuel in because I knew I was going to out for longer than 7 hours... so I casually ate my PEANUT M & MS... LOVE IT! and a cliff bar and a banana... made sure to grab some cliff blocks and gels for the run, and to put on more sunscreen!! Crispy critter!

I started running and I was surprised at how good the run felt. I knew I was going slow but it was easier than I imagined it would be. So I trot along at a 11 min mile pace or so and made sure to drink lots of water... IT WAS OVER 80 DEGREES WITH A HIGH % HUMIDITY! we went through the woods and the first lap I did ok... after the woods we came up on a dam that we ran over... IT WAS SO BEAUTIFUL... i started crying at this point... what if I had quit? I would have missed out !

the picture does not do the beauty justice....yes I brought my camera with me... why not? Its not like I was going to win... the first lap I felt good and semi smooth.... no complaints except it was so hot...and everyone was on their second lap already which is cruel.. because you run all the way to the finish before you have to do your second lap and so many people were done!! haha!

the second lap was an oven... My head felt like the guy in the cheesy movie GHOSTRIDER... and my feet felt like they were walking on fire... but Im used to it!!?!?! at least the bandaids were sticking from the combo of liquid bandaid,

superglue and bandaids..and it didnt rain! second lap through the woods I kept expecting to see a serial killer with an axe or a bear to maul me.. I hallucinated a little bit and thought a branch was a snake.. or maybe it was wishful thinking? death by snake? the second lap of the dam wasnt as good as the first...a lot of the volunteers were packed up and leaving and the water /heed stations were running out... and there was a part where we run on the dry side which was horribly hot!!! at mile 10 on the run is where I bonked... or maybe it was the fact I had been out in the heat for over 7 hours... but my body was ok with a walk. IT WAS OK BECAUSE I KNEW I WAS GOING TO FINISH... the last mile I sucked it up and ran... ran as fast as my poor EM body could go... run time: 2:57.... about the same time as the last half of my marathon! at least I'm consistent? haha! as I run through the chute I was crying.... they were teardrops of HAPPINESS.. I JUST WENT THROUGH PURE HELL TO FINISH THIS RACE.....IN SANDALS....
AND WITH ERYTHROMELALGIA...

this race was completely up to me... I did not have any family or friends or ESPN.. haha... no one to motivate myself and to cheer me on.... all I had was me, and the hopes and messages from the EM sufferers who have contacted me and my wonderful clients rooting for me in spirit. Thank you for everyone for cheering for me...and for voting for me! I will post the race photos up when they come in... Here is a shot that i took of myself right after the finish where I could barely hold up the camera...

Nice and pretty...lets see how you look after 7 hours and 44 min in the heat??? I was half laughing and half crying... does this scare me for the Ironman??? NO IN FACT IT MAKES ME MORE CONFIDENT... I went through a race from hell...where so many things just went so wrong...and many times I could have quit.. but I didn't! I DIDN'T QUIT.. EVEN WHEN IT SEEMED TO BE HOPELESS TO FINISH... I FINISHED... :) this kind of race truly shows your character...and I know I am one tough cookie after this! So Ironman here I come! It reminds me of life..how things don't always turn out the way you want.. but its what you make of it. What is that saying??? WHEN LIFE GIVES YOU LEMONS.... MAKE A LEMON FRESH COOL FOOT SOAK! :) ok that is a Kate saying...haha

I may not be fast... and I might have been the slowest in my age group...but I hope I can show how tough a EM sufferer is...how much of a fighter we really are just to even live. Never underestimate someone with EM.. don't tell them they can't do something... don't give up hope on them. WE ARE SO STRONG... WE ARE SURVIVORS...

those are my feet... AND THEY JUST DID A HALF IRONMAN! I LOVE THEM!

I am like giant boiler. Once the fire is lighted under me, there is no limit to the power I can generate.

"If we did the things we are capable of, we would astound ourselves!"

2008-05-27T18:31:00.008-04:00

"If children have the ability to ignore all odds and percentages, then maybe we can all learn from them. When you think about it, what other choice is there but to hope? We have two options, medically and emotionally: give up, or Fight Like Hell"

I don't know about you, but I'm going to fight like hell!!!!!
So, I have a half Ironman race called the Black Bear Half Ironman coming up this Sunday, June 1 !!!! After the disaster bike ride Saturday, it makes me very nervous to do this race. I have looked at the bike elevation and read the race reports saying how hilly the bike ride is, and I will admit, IM SCARED!

For example, this is the elevation profile of part of the path I would do my long bike rides on IN NEBRASKA:

Don't let the peaks confuse you, if you look at the numbers to the left you can see there is only a max difference of around 20 feet of climbing... which translates to PANCAKE FLAT. And since it is only 11 miles it makes the peaks look steeper than they are. Still Flat.

and the race of 56 miles profile of Half Ironman is :

as you can see by looking at the numbers on the left: there is a 300 foot difference and a lot longer climbs as well. Most of the race reports mentioned how hilly this course is and being from Nebraska aka flat... it should be fun for me! HILLS GLORIOUS HILLS. I know all of you experienced climbers/riders out there are probably laughing at me right now... but EM sufferers know what I mean. IT IS HARD TO CLIMB WITH EM. Just climbing stairs alone is frighteningly painful... and the bike is like putting your legs on a kabob and barbequeing them... Kate's leg kabobs anyone??? They are well done !! Caliente! This is what I feel like I am riding on when I climb a hill: Lets see how fast you can ride in this??? IT BURNS!

At least it is only a 13 mile run afterwards??!?!?!?! shouldn't be too bad compared to the marathon. Another trick is going to find a way to keep the bandaids on my feet through the swim and bike for the run.... somehow I doubt they will stick through that! I don't know if I should try to stick them on before the run because my feet will be sweaty from the bike... hmmm... Hopefully bandaids will sponsor me...haha... and design a Kate Proof bandaid that is heavy duty. :)

I just have to make sure I eat enough so I don't bonk. I don't like crying Kate... happy Kate is so much more fun! woohoo!!! I've never been to the Poconos Mountains before and I'm sure its going to be a beautiful race. And I'm sure its going to rain.... haha! Even better! maybe for safety I should have these bike attachments in case it doesnt rain:

WHAT A LOVELY WAY TO BURN.... LOOK OUT MOUNTAINS HERE I COME!!!! I just hope I don't cause any forest fires up there!!!! haha!

"The trick is not how much pain you feel, but how much joy you feel. Any idiot can feel pain. Life is full of excuses to feel pain, excuses not to live, excuses, excuses, excuses."

Pinnochio Girl

2008-05-24T19:16:00.011-04:00

"Your training partner's name is pain. You start out trying to ignore him. Can't do it. You attempt to reason with him. No way. You try to strike a bargain. Hah. You plead. You say "Please stop, please go away. I promise never ever to do this again if you just leave me alone." But he won't. Pain only climbs off if you do. Then you're beaten. "

I biked to the top of Bear Mountain today! And I'm not very happy about it right now. It is a total of around 120 miles for me. I should have stayed in bed this morning! I met up with 2 guys who were riding with me and who are faster than me. My legs felt very sluggish and hard time going up small hills. I just couldn't keep up with them on the hills... should have took that as a sign! We get about half way there and one of my buddies says to me Katie... don't think you can make it to Bear Mtn today, go another day... but I insist... i wanna go ! blech! He ends up meeting up with his normal group of riders and turns back... I should have too!!!! But, Dan and I keep going.. I did pretty good until we got to the mountain. Hill is also a 4 letter word!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! or should I say mountain!??!! I AM FROM NEBRASKA... enough said. It wasn't a huge steep hill but it was long! and I bonked in the middle!! I b*tched and moaned a little bit.... are we there yet????????????????????????

finally we reach the top.... Halleluah... !!! I CLIMBED MY FIRST MOUNTAIN ON MY BIKE! it may not be too tall, but I did it!!! I just started riding last year! For a girl from NE, with EM.... I was pretty proud. A little wary about doing that whiteface mountain race in a couple weeks.. hmm.

My left hand has started to malfunction at this point... its kinda funny but kinda not, I can still feel the pain in my hand, but I can't feel it being touched, or make it move properly..why can't it just go fully numb??? thats not fair!! haha! .not to mention my front brake had been rubbing the whole way and now DIDN'T WORK!!!!! HMMM...lets go down a mountain with only half your brakes!!! and one hand not working, dead legs and 54 miles left.... waaaaaaaaaaa

Yes that is a cementary on the way back, and yes I felt like I could crawl in a hole and die. It is a beautiful cemetary and I thought that would be a good place to be buried. When you :bonk" or hit the wall, is when your inner demons come out. I used to be obsessed with death. I would pray every day for God to just kill me. Some days I would think about it all day. Some days it was the only way for me to get through the night was to think I could kill myself in the morning. Death was a solace to me. Please God, why me? What did I do to deserve this? I must have been a sh*thole person in my past life to deserve this?? WHY? WHY GOD HAVE YOU ABANDONED ME? WHY CAN'T YOU HEAR MY PRAYERS? HOW CAN I LIVE WITH THIS HORRIBLE PAIN? Some days I actually thought I had died and was sent to hell. I am burning in hell every second of every day. So much for my happy ending. When i hit my lowest point, when I was living without hope... it is a heart wrenching place to be. That is when I decided to kill myself. I wasn't pretending or crying out for help... I WANTED TO BE DEAD.. So I had to figure out a way to make sure I died and not be able to saved. So death by overdose...not an option. I didn't have a gun, and I didn't want to slit my wrists because that too can be saved. I wanted to kill myself in a way that people would wonder why would she kill herself like that??? there must be a reason why someone would do that to themselves. I used to think about what they would write on my tombstone: Halleluah, what took so long????? or who was she?? How lucky are the dead.

"Confront the dark parts of yourself, and work to banish them with illumination and forgiveness.Your willingness to wrestle with your demons will cause your angels to sing. Use the pain as fuel, as a reminder of your strength."

I started crying at this point. What if everyone is right? What if I can't do an Ironman? What if I can't do this??? you dont understand what this means to me. I wasn't just riding this distance for today. I can't just quit today and be ok.. if I quit today, they are right! I can't take it if they are right. Please don't take away my hope from me. I can't go back there. I just can't. If you take away my hopes and dreams, you might as well just kill me. You see, the same day I woke up and was going to kill myself, is the same day I decided I wanted to do an Ironman. Don't you get it???? IT SAVED MY LIFE. I wanted to help people with EM. I wanted to show them there is hope and a reason to live. But if i quit now?? what am I saying to them and what am I saying to myself??? So I kept going, crying, going painfully slow. I will give Dan credit for riding painfully slow with me and putting up with my crying. Happy Kate was nowhere to be found today on this ride. He saw the EM girl, the girl in extreme pain, whose hope is dangling from a tiny shread. He saw the girl that not too many people see. He saw the girl with Erythromelalgia.

I HAVE ERYTHROMELALGIA... and it hurts so bad! I felt so hot...like a car overheated and the engine light came on and which just blew up. I am tired. I felt like Pinocchio...

I WANT TO BE A REAL GIRL...

I want to be a girl without EM. I want to do the things normal girls can do. I want a day without pain. I want to have a normal relationship with someone where pain doesn't interere.

I am tired of having to explain to people why today I am slow... why some days I hurt more... why it HURTS LIKE BLOODY H*LL TO CLIMB HILLS WITH EM... IT BURNS SO FRICKING BAD TO CLIMB A MOUNTAIN WITH EM!!! I can see it in their eyes... why is she so slow today? What happened? What is wrong with her? I know they get tired of going slow or waiting for me. Why did she take so long to run a marathon? WHY DO I EVEN FEEL THE NEED TO HAVE TO EXPLAIN MYSELF???????? I HAVE EM... I don't want to have it...but i do. and that is why I do the crazy things I do...

so I decide to keep biking... its ridiculous how slow i was going...once again.. riding on pure determination and will. I know it only goes so far.. but I did it. I have never been so happy to see the George Washington Bridge: I love it! I could kiss it!!

then we cross over the bridge! MANHATTAN I LOVE IT!!!!!!

I biked to the mountain and up the mountain and back!!! "First there was a mountain, then there is no mountain...then there is... " Thanks Donavon.

Once again I wrestled my inner demons... a normal person would have given up at that point. A normal person would have called her friend to come get her. A normal person wouldn't have made it feeling the way that I did. A normal person would have cried bloody murder and never ride again if they felt the pain I did.

SO I AM HAPPY I AM NOT A NORMAL PERSON! I HAVE MORE HEART AND MORE DETERMINATION THAN A NORMAL PERSON. I FEEL MORE PAIN AND I FEEL MORE LOVE. I ENJOY LIFE MORE THAN A NORMAL PERSON!!!!! I AM SLOW AND I AM NOT A QUITTER!!! I BIKED A MOUNTAIN!!!!... in more ways than one!!

So one day, in the future, I will die... only God knows when... but when I do, you can cremate me which would be a good ending for a fire starter such as myself... and you can put on my tombstone:

"Some people chase their dreams. Kate hunted her's down and beat them mercilessly into submission. "

haha!!!!!!!!!!! ready or not... ironman here I come! That's gonna hurt!

Take it on! Eat it! Suck it up! Spit, swallow, choke or thrive! If you can do it, so can I.

The greater your capacity to feel the pain, the greater your capacity to love.

2008-05-22T10:12:00.004-04:00

“People are afraid of themselves, of their own reality; their feelings most of all. People are taught that pain is evil and dangerous. Pain is meant to wake us up. People try to hide their pain. But they're wrong. Pain is something to carry, like a radio. You feel your strength in the experience of pain. It's all in how you carry it. That's what matters. Pain is a feeling. Your feelings are a part of you. Your own reality. If you feel ashamed of them, and hide them, you're letting society destroy your reality. YOU SHOULD STAND UP FOR YOUR RIGHT TO FEEL YOUR PAIN"

Pain…. Is a four letter word! :) But what is pain really? Everyone has a different response to it and everyone has different pain thresholds. So why do some people cry over a broken fingernail pain, and others can have surgery without any anesthesia? How can some people live with the pain and others become addicted to pain killers to try to get rid of it? I have been talking to a Buddhist Monk about pain, and I find it very interesting! He is fascinated by my EM pain and how the Yale Research Group says it’s the “model for all pain”. I talk to him about how I deal with my pain and how I embrace the pain instead of fighting it. He tells me their ways about life and suffering and meditation. He tells me I have embraced my Buddhahood. He told me once, that I hold dear to my heart and it was,

“You have found your hero Katie, and your hero is you.”

Some people ask me how I feel when someone complains to me about having a headache and if I feel they are stupid. I don’t think that at all. Everyone has pain, and everyone has the right to feel their pain. I may have more pain that most people, but it doesn’t make their pain any less real. Just don’t tell me my pain doesn’t exist, and don’t invalidate it. Just because my disorder doesn’t kill you, doesn’t make it any less painful than cancer, just different. In a way, my extreme pain allows me to connect with other people in pain. I know what it is like to suffer, and I know how much of a toll it takes on your body when you have chronic pain. Do you know how hard it is just to live with pain let alone on trying to work? Or trying to focus on bills ? on dating or being a relationship? My ex boyfriend and I would fight about the air conditioning and heating temperature control… it was stupid to me… my pain can be made worse by heat and I have trouble sleeping in a room higher than 70 degrees. I am having trouble dating with EM I can’t imagine if I was married and what it does to a spouse. I just wish people were more understanding and forgiving. My strength is also my curse… I may laugh and seem like a normal person but I have EM. I have days where it hurts to open my eyes and I just want to lay in bed and die. I may not look like I’m in pain… BUT I AM! I AM IN PAIN! PLEASE BELIEVE ME! I may do triathlons, and marathons, but I don’t recover as fast. I have limitations even though I don’t like to admit them…haha

WE EXIST, AND THIS IS OUR PAIN AND ITS HORRIBLE!! We are living your worst nightmare every second of every day. I know I speak for most EM sufferers out there, BUT WE ARE TIRED OF BEING INVISIBLE…

Another part of Erythromelalgia is cardiovascular as if the pain isn’t enough. Our blood vessels do not dilate and constrict properly. Most of time, I am over dilated and that causes the flushing or turning bright red. Sometimes my face will be blotchy and striped.. Sometimes like after the marathon you could see all the veins and arteries in my legs and it was freaky! My feet swell up to 3 times the normal size especially when I run. Another problem is when you get a small scratch, it will turn out to be huge because of the over dilation and a simple scratch from mountain biking yesterday turned into this:

it is just a tiny thin scratch that I barely noticed last night....it took laying down and getting dilated to make it look like a huge scratch that might need stitches! but when I put a cold compress on it it shrinks back down... I was a brat I could scare a bunch of people with dilated wounds... what would work say if I showed up like this??? haha! Seriously, though, its a tiny scratch from a branch to the face. But, I thought it would be a good demo of what happens to our tiny wounds and what could happen to large wounds. So do you think this is going to stop me from mountain biking??? NO WAY! haha!

My poor parents and family have to deal with not only me having EM but my curiosity and passion for life, breaking boundaries, exploring, and pushing myself to my limits and making new ones!!!!. haha! I'm not scared to live.. and I'm not scared to die.. I'm scared of doing nothing. I am scared of pain making a black hole in my heart.. but its not going to happen! I don't let pain define who I am, I am finding new ways to define pain.... AND IT'S BEAUTIFUL!

"Many of us spend our whole lives running from feeling with the mistaken belief that you cannot bear the pain. But you have already borne the pain. What you have not done is feel all you are beyond the pain."

Pain is life -- the sharper, the more evidence of life!

2008-05-21T16:44:00.003-04:00

If you don't feel extremely self-confident right now, ask yourself what you are doing to test yourself. By facing a difficult challenge, you can prove to yourself how special you are. Even if you don't succeed, the act of facing a fear or trying to climb an especially tall mountain alone will go a long way toward making you see that you are capable of doing just about anything. In fact, you are capable of doing more than most! Dig down deep and wake up some of your slumbering ambitions.

I tried the mountain biking thing again... That still scares the crap out of me!! BUT I am a little bit better! I jumped over a few more branches/logs and did a long climb. I did a rock garden, and managed to do a fly over the handle bar stunt and land in some mud! It rained a lot yesterday and started to rain when we started out. Why is it always raining whenever I am outside? I'm beginning to see a theme here. Apparently I don't have enough challenges, so mother nature decides to test me with rain. It is funny to mountain bike in the mud because your back wheel has a mind of its own. That is why I ended up in the mud! Must be what pigs feel like.... squeal squeal.. THAT WAS FUN!!! My riding buddy says to me, "Katie, you have a couple screws loose in your head"... haha! Thats ok! I've been accused of having a lot of head injuries. :) :) I did go down this rock downhill section that I couldn't do last time!! I ended up going down and over this surprise ramp(rain drainage pipe) and had a huge liftoff!!! WEEEEEEEEEEEEEEEEEEEEEEEEEE! I came 2 inches from hitting a tree in the face... But I did it! I did it!

Mountain biking is like life to me. It is a lot of mental and guts. You have to attack the climbs... and really push it if you are to make it up without walking the bike. You have rocks, branches, logs, gravel, mud, everything getting in the way and yet you have to go for it if you want to make it! GO GO GO GO come on, up the hill... go to the left to avoid the huge rock, swing right to avoid the log, duck under the fallen tree, jump over the tree root, and yet pedal faster and faster, cause if you slow down you are not going to be able to make it to the top of the hill! come on! grrrrrrrrrrrrrrrrr.... if you stare at the boulder, you will hit the boulder, stare at the path you want to go...don't let anything distract you..keep looking ahead and find a path you want to go. You know you can do this! You have come so far.. this is nothing compared to EM pain... don't slow down! Don't let your fear win... come on come on... just a little farther... if you choose a path that is hard, so be it, if path is chosen for you, so be it... but ATTACK IT... AND GO ! GO NOW! THERE MIGHT NOT BE A NEXT TIME...HAVE FUN WITH IT! CHALLENGE YOURSELF! THERE MIGHT NOT BE A TOMORROW! GO ! GO NOW! DON'T WAIT... RIDE IT LIKE THIS IS YOUR LAST RIDE AND YOU ONLY HAVE ONE MORE CHANCE. ENJOY IT LIKE ITS YOUR LAST. LIVE EACH DAY LIKE ITS YOUR LAST. WHAT ARE YOU WAITING FOR?????GO ! GO NOW! LAUGH OUT LOUD, LAUGH UNCONTROLLABLY, LOVE, SMILE, EMBRACE LIFE! SPREAD LOVE AND JOY TO EVERYONE YOU MEET. THIS MIGHT BE YOUR LAST CHANCE TO LIVE.

I'M STILL ALIVE!!!!!!!!!!!

ARE YOU???????

You can only live once, but if you do it right, once is enough!!!!!!!

Adversity cause some men to break; others to break records.

2008-05-17T08:48:00.006-04:00

"Damn it, Bones, you're a doctor. You know that pain and guilt can't be taken away with a wave of a magic wand. They're the things we carry with us, the things that make us who we are. If we lose them, we lose ourselves. I don't want my pain taken away! I need my pain! " Captain Kirk

Hmmmm do I need my pain??? Maybe I do now... I didn't at first! When I first got sick some people would tell me, "pain is your friend", and it would make me so mad! WHO WANTS A FRIEND LIKE THAT??? THAT TORTURES YOU AND IS NEVER ENDING!!?? I used to think that anyone who said that obviously has never had any severe pain....or they have horrible friends!! haha! But if I had the chance to go back in time and change it, I wouldn't change a thing. Not only have I lived with this horrible pain disorder, look what I am doing with it! It gives me confidence that I never had before. Believe it or not, I used to be shy and quiet... haha! Now people just can't shut me up or stop me from laughing! Some people ask me if I'm afraid that I will look like a dork on national tv, that I'll look fat, or stupid, or sound funny... That stuff doesn't even cross my mind! Who cares? Its not about me. First of all, I AM A DORK! haha... and I don't care! i am not hiding anything...this is who I am! and I am a super dork who is not perfect, but at the same time, I am the first to laugh at myself when I do something idiotic! But what I look like on TV doesn't matter to me. What is important is spreading awareness of EM. Laughter is just one way that I deal with the pain.

da da da da.... its Super Kate in sandals.... using her super powers to spread awareness for EM by running through lava, biking over volcanos, swimming through acid, and fighting fire with laughter!!!

see told you.... haha

Lots of people have asked me about how much hope I have for a cure in my lifetime. Yes that would be so fantastic! Especially if what they say is true that if they can find a cure for EM they can find a cure for all pain disorders! That would be millions of people without pain!! How great would that be??? What would it be like to wake up one morning and not have any pain? What would that feel like? I used to think about that all the time when I first got sick. Every night I would lay in bed, maybe I will wake up with no pain tomorrow! Maybe this new drug will work and take the pain away. Maybe it will disappear as fast as it came on... Maybe maybe maybe maybe..... But all that does it keep you in limbo, waisting time thinking about what could be, what may happen. BUT WHAT IF IT DOESN'T??? THEN YOU JUST SIT THERE WAITING FOR SOMETHING THAT MAY NOT HAPPEN.... I try not to think about it. I don't like to think to the far off future because the thought of being 80 years old with this pain for that long scares me! So instead of waiting for something that may not happen, do something now. The pain is constant and never ending, the only thing that can change is you.

Lots of people ask me what the turning point was for me... and I've thought long and hard about this. The answer is that I ACCEPTED IT. I accept the fact that I have Erythromelalgia and it is who I am. It is a part of me! Take it or leave it. I HAVE ERYTHROMELALGIA... I have excruciating pain all over my body every second of every day... but it does not have me! If you try to fight EM you going to lose.... its an opponent that never stops, never tires, has no mercy, and very strong... DONT FIGHT IT... DONT FIGHT IT, USE IT! Use it to your advantage.. you can't change the pain, you can't stop it, so use it! I use it to motivate me... it will not control my life... I make it a challenge... lets see what I can do with this pain. Everyone tells me I can't do anything, but lets see!

ITS KIND OF FUN TO DO THE IMPOSSIBLE!!!!

"Pain. Love it, hate it, get angry at it. Breathe it with every breath, feel it with every step and use it. It lets you know you are still alive, more alive than most people will be in their whole lives." – Strauss

Another turning point was my attitude. Instead of looking at everything I lost, I look at what I've gained!!. I thought I had lost almost everything!! I lost my friends, my dream job, my hope, exercise, my love, my life, my future! But, I didn't really lose anything. The friends I lost weren't really my friends at all. You really find out who your true friends are when you get sick. The job I lost, wasn't really my dream job. Yes I used to be a CPA, and everyone asks me how I cope with losing such a promising career in comparison to what I do now. But I love being a Personal Trainer! I get to help people! I get to move around all day! I get to do something I love as my job! I HAVE MY DREAM JOB NOW! The CPA was my past self but it is no longer my path in life. As far as my life and future goes.... I am so much happier than I used to be! I am not afraid of things anymore... I have more patience now, I LAUGH ALL THE TIME! I am living my dreams and if something comes along and takes things from me.... THEY CAN'T TAKE AWAY ME... WOOHOO! My life is not over cause I have EM, my life has just begun!

One of my favorite quotes my sister gave me when I first got sick!

"Just when the caterpillar thought its world was over, it became a butterfly"

One thing that has been bothering me is the Cadence Kona Challenge Voting that is happening right now. Basically the way it works, is that everyone can pick 1 guy and 1 girl to receive a full paid trip to IRONMAN LAKE PLACID... in hopes of QUALIFYING FOR THE CHAMPIONSHIP IN KONA. I will be honest, I am not fast enough right now to win my age group to be able to "qualify" for KONA. I wish I was! But I just want to finish the IRONMAN and that would be a huge accomplishment with EM!! So, when you vote, dont vote for me if you expect me to win or qualify for Kona, VOTE for me if you share my dream of helping others, and raising awareness. i want to show the world that it is possible to achieve your dreams even against all odds! When I first got sick, I happened to turn on the Kona Ironman on TV and I saw so many people doing the IRONMAN despite disabilities, obstacles, with heart warming stories. I hope I can inspire people in the same way. I thank everyone who does an IRONMAN, knowing they will not win, but doing it for themselves, for others, for disorders. Thank you for not giving up, and for believing in yourself and for tackling the grueling IRONMAN knowing that it will take you a lot longer to finish than the pros. Thank you for being so inspiring! I may never make it to KONA, but I am going to do an IRONMAN anyway regardless of location. For people like me, it doesn't matter where you do it, or whether or not you win your age group... what matters is that you do it and finish it against all odds.... and I can't wait! Ooooooooooooooooooh its gonna hurt! :) :)

"God did not make me fast...he just gave me an immense capacity to suffer!"

ESPN CONTINUED....MARATHON AFTERSHOCK

2008-05-14T08:46:00.003-04:00

"You must be the change you wish to see in the world." -Mahatma Ghandi

Monday and Tuesday ESPN came to New York City to tape me doing various things~! On Monday, Steve Cyphers and fantastic interviewer for ESPN, interviewed me! Then after the interview, they followed me to Cadence where they taped me swimming in the endless pool! I still love the endless pool... then they taped me doing a field test on the bike! woohoo!

Then on Tuesday, they came to work and taped me teaching a Spin class and training 1 client! The spin class was awesome! Everyone had so much energy and I loved it! Thank you so much for everyone coming, it means a lot to me! Then I trained my client Kira. I put her through a heavy round on the jump machine aka Kate's torture machine... I love that thing! My clients love it when they are done.. haha. Also other various exercises and she did awesome! thank you KIRA! YOU ROCK! I LOVE MY JOB!! :)

I still can't believe ESPN is doing a feature on me!! I don't know when it is actually coming out, they said maybe July. I just hope i did a good job at describing and showing ERYTHROMELALGIA and showing how hard it is to deal with EM. What if I didn't? What if I could have done better and said something better? I just hope people can see and learn about EM and see that it is possible to live with pain and be happy! I did the best that I could! I am so thankful that I had this chance to tell my story and to tell people about EM! I wonder if the ESPN crew has had enough of me hooting and hollering yet?? haha! They got a huge dose of it yesterday in SPIN class! :) My client told the producer that he should train with me.. and the producer said that he knows and has seen enough of Kate that he knows that he would not want to train with me.... haha~ I'm going to take that as a compliment! Come on you know that it would be fun... especially for me! :) He hasn't caught the Kate virus yet to know that pushing yourself to the limits and through pain IS FUN@!!! *giggle*

It has been over a week since the marathon and I will admit the first few days after was hard! I knew I was hurt when I was trying to walk to the car after the race... I tried to sit in the car and got charlie horse cramps in both feet and my whole legs!! OWIE!! Then I needed help to climb the 4 or so stair to my Nana's house... and I couldnt even sit on the ground when I desperately wanted to! haha! But the worst was taking a shower.... OUCH!! I TRIED TO BITE MY TONGUE but I couldn't stop screaming bloody murder when the water hit my feet.... My poor mom asked if someone was in there killing me!~ No but it felt like it... :) Then I had to hop on the train back to NY so I could teach my spin class at 7 am on Monday... I couldn't find a sub!!!! I get off the train hobbling with my suitcase and bag and took a cab home!!! haha! But I knew I was going to have trouble climbing the stairs, so my friend helped me lug them upstairs.. and I pulled on the railing slowly. I crashed in bed and woke up at 530 am still in the same position as when I fell asleep and my whole body was cramped up! Trying to climb out of bed hurt, arg! The worst part was taking over 10 minutes to get down my 4 flights of stairs!!! I had to brace myself against the wall and railing... cause I couldnt sit down to scoot down on my butt! I managed to teach my spin class pretty good...but climbing out of the saddle didn't work. One person in class asked me that since I ran a marathon yesterday that I would take it easy on them today..... uh...... hmmm....... lemme think.... did you run a marathon yesterday? no? so NO... turn up the resistance.. haha! Come on you know its fun and you didnt get up early on a Monday morning to come to an easy class! My fellow trainers were making fun of me walking around like a zombie. I just couldn't work very much those first few days because I kept running out of energy quickly and wanted to pass out on the ground. But I had to teach spinning every day after the marathon...AND I SO NEEDED A BREAK!

Not to mention I ended up with a nasty infection in my foot and a 102 degree fever, and anyone with EM knows how bad it hurts to have a fever with this disorder! So they gave me some shots in the butt.... and the doctor asked me, did you know you have glass and rocks embedded in your foot???? Why didn't you notice them when you running...? You woud think I would notice glass? But must not have been that much pain cause I didnt notice... Doc said if I hadnt come in on Friday and waited till Monday I would have been in serious trouble... so for the IRONMAN< take some days off! and go to the doctor right after the race!!! :) You should have seen my foot! I'll spare you the pics that make me want to puke!

It was kinda funny after the race and the first thing people would ask me is: What was your time??? Who cares about time? I proudly would tell them 4:52:50 but time means nothing to me right now!! I FINISHED I FINISHED I FINISHED WITH THIS HORRIBLE DISORDER!!wooohooo! I used to be caught up with time... when I swam in high school, college, it was all about time. When I did any kind of race it was about time.... Do you know how freeing it is to not worry about time anymore?????????????????????????? You can enjoy the race more, you can have fun with it.. you can laugh at yourself when you are not going as fast as you normally do... ITS FUN NOW! I AM HAVING SO MUCH FUN NOW! I laugh all the time, and its not just a little chuckle, its rolling on the floor laughing!!! I LOVE IT! I have a couple friends that their mindset is that they don't want to do the race if they can't win. ???? I don't understand that? You are never going to win if you don't try. If I had that mindset I would not be here right now! It shouldn't be about winning... yes its fun to win, but if you aren't going to do a race for fear of failure, that is ridiculous! Don't be afraid to fail... who cares??? Try it, have fun with it, you never know if tomorrow you won't be able to do anything anymore. ENJOY IT WHILE YOU CAN! If you are so caught up with winning or trying to beat someone, than you can't really enjoy the race... So my awesome friend tells me about this mountain biking race on Sunday.... uh.. haha! sure why not? I will be dead last but having a blast! That scares the crap out of me... but that would be so cool to do it! I have not done that before, so why not?? IM GOING TO DO IT! SO if you hear an unstoppable laughter echoing through the woods and hills... then you will know its me!! haha...

Difficult times have helped me to understand better than before, how infinitely rich and beautiful life is in every way, and that so many things that one goes worrying about are of no importance whatsoever.

"they told me it was impossible, I told them it was inevitable"

2008-05-05T20:08:00.001-04:00

A marathon is 20 miles of hope, followed by 6 miles of truth

I DID IT!!!!!!!!!!!!!!! I RAN A MARATHON!!!!!!!!!!!! 4:52:50 OF PURE PAIN! I can't believe I did that! I will do my best to describe my whole amazing experience. I felt all ranges of emotion from hope, nervousness, excitement, despair, happiness, and amazement. I felt excruciating pain, endorphins, weakness, strength, inner determination, pure gut wrenching will.

It started Friday morning when I arrived in Providence, Rhode Island for my 11 am interview with Barbara Morse Silva from NBC Channel 10. She interviewed me and taped me running and I did my best to describe what it was like to have EM. You can watch it below at this link. Thank you to Barbara Morse Silva for giving EM some coverage on TV!!
http://www.turnto10.com/northeast/jar/health___fitness.html

I also met with John Howell from The Warwick Beacon, who interviewed me and my 92 year old Nana who is an amazing lady! He took our picture and wrote down a lot of notes and the article will come out in Tuesdays Beacon. http://warwickonline.com/warwickonline/index.php?option=com_content&task=view&id=37033&Itemid=0

At the end of the race, I was interviewed by Carolyn Thornton a Journal Sports Writer for
The Providence Journal. She interviewed and taped me and typed up this article!
http://www.projo.com/running/content/projo_20080505_conklin.ce3edeea.html

I was also interviewed by Cox Local Channel 3. I will let you know later when I get details about this showing.

Before I describe the marathon I want to give some thanks. I want to thank Deb Weinreich, Director of PR for Eident Sports Marketing. She really pushed for the local media attention for me and EM and I want her to know that I really appreciate all the work she did for me!!

I also want to give a shout out to all the volunteers and spectators at the marathon. A special shout out to the guy in the Chef's hat, you were awesome! To Katie, who ran with me for a while, and to my other male running buddy who talked to me when I hurt really bad! Thank you! I want to thank the volunteer who had the ruffles potato chips (which i dont normally even like) but the salt was FANTASTIC RIGHT THEN... you are awesome! I want to thank the volunteers who yelled out" Its the girl in sandals! Go sandal girl go! I want to thank the girl with the sign that read " FEET DON'T FAIL ME NOW! " You have no idea how that helped me at mile 24 ish. To the family with the kids handing out the Sports Beans, thank you thank you thank you!!!

and of course: the ESPN CREW!!!! I will leave out their names for their privacy... I am so thankful that you gave me this opportunity to tell my story and share my marathon experience with me! You guys all rock! You cracked me up, gave me encouragement, the guys on the motorcycle ..haha you were so awesome! I loved watching you go painfully slow on the motorcycle, taping my hurting feet in sandals, and giving me that huge smile and encouragement even when it was going realllllllllll slowwwwwwwwwww. I loved how the driver would always say "go katie go" And the camera guy gave me the opportunity to describe exactly how much pain I was in, and I still managed to laugh! And at mile 23 when you said to me: "What would you tell your clients right now" really was perfect. You couldn't have said it better! I replied NEVER EVER GIVE UP! In my mind something clicked: suck it up, its just pain, its just pain, its just pain. NO MERCY KATIE! Oh and thank you for taping me eating the potato chips and enjoying the salt. .. and thank you for putting up with my laughter and hoot and hollering throughout the whole race!!! HAHA! I can never thank you enough, and words cannot express. To the guy on rollerblades, who will also remain nameless, you were amazing! How you managed to skate bent over with the camera between your legs taping me run without falling down is amazing to me. I know you said you weren't very good on blades, but you did not fall down once! Thank you for your skating entertainment and a little bit of comical relief because those 2 miles on the bike path were agony for me! Seriously, THANK YOU!
To the camera guy remaining nameless at the start, thank you for giving me some distraction watching you tape me in the pouring rain and soft hail balls waiting for the start. I got a kick out of you tape me from all sorts of angles, it was rough weather out there, but I appreciate it! Thank you for driving around the course, fighting the traffic and runners all to shoot me. THANK YOU! and of course to the ESPN Producer who made this all possible. I hope you know how much this meant to me and how much it means to all EM sufferers!

FROM THE BOTTOM OF MY HEART, THANK YOU!

now to the marathon:

I woke up Sunday morning at 5:30 am and laid in bed enjoying the moment. Today, I am running a marathon... 26 miles... I woke up with this peace and quiet. I wasn't as nervous as I thought I was going to be. I thought I would feel like I would puke or something. But I felt calm. This is where I was supposed to be. Enjoy this moment because it will never happen again. Right here, right now. I am ready. I arrived at the race start around 8:10 am and met up with the ESPN crew... IT WAS POURING RAIN. I didn't really care... I was ready to run, rain or shine. I had one camera man standing by me at the start. Taping me being nervous waiting for the start which was of course delayed. He taped my feet alot, which I will have to admit strange to me. My feet feel the most pain. You never know how much you use your feet until they are hurt. THOSE ARE MY FEET... AND I LOVE THEM! I tallied how many people would ask me if I was really going to run in sandals: 17 at the start. Some were very friendly... the guy with the Chef's hat.. you were awesome! I love it! There was a really nice girl who is doing the 50 states marathon challenge and I chatted with her for a while! She was super nice! I was starting to get very nervous at this point. When it started soft hailing on us or whatever you call it, it made me laugh hysterically! I AM RUNNING IN SANDALS, ARE YOU KIDDING ME WITH THIS??? haha!
Then we start! We start running and I'm feeling very strong... I could feel my running mechanics have changed because my feet are slipping around in the sandals, and I had to run differently to keep them on my feet!!! My shins were hurting because of this.. but I just ignored it. The first few miles I was running at an easy 9 minute pace. I WAS TOTALLY SURPRISED OF THIS... I felt so strong and so good. I can't believe I am running a marathon!! Mile 4: 36 minutes, mile 6: 54 minutes, mile 10 1:30.... right on pace!! I CANT BELIEVE IT??? IT SEEMED EASY??!!!?? I made the biggest mistake though... I didn't eat or take in enough calories... which would lead to my BIG BONK. I started to notice huge charlie horses in my quads...? my quads? why are they cramping??? I decided it was because of the rain making it hard to run normally in my sandals (if that is considered normal) haha... ok kate, relax against the pain, relax your quads... RELAX... I started to slow down, and I took in some gels and some energy drink... BUT IT WAS TOO LATE.. mile 15 I knew something horrible was coming because my arms were losing circulation and I could feel all the blood going to my legs and feet starting to swell. I took off the sleeves because they were so hot at this point even though they were wet from the rain. I want people to know what happens to us when we start to get really hot. It is similar to a panic attack when you cant breathe and your heart races and all you want to do and can do is try to stop the attack and stop what is causing it. Mile 17 started to bonk... at this time we went on the bike path, and the rollerblade guy made it a little better since I could watch him try to record me and skate at the same time. But this trail WAS AMAZING TO ME... it was so beautiful.. right on the water with this gorgeous lighthouse. It made me teary eyed because I WAS HERE AND I WAS ALIVE. i will repeat that... I AM STILL ALIVE doing something that so many people told me I would never do again. !! What if I had killed myself 4 years ago.. i would be missing out on this! IT WAS SUCH A BEAUTIFUL FEELING to be running right then. IT HURT SO INCREDIBLY BAD AT THIS POINT.. and yet it was so beautiful. At the end of the train the producer, camera guys, and motorcycle guys were all there, and I laughed because I was starting to go very slow at this point.
I am going to try and describe the pain at this moment and how it felt. I learned so much about myself when I reached this point. I WILL ADMIT...IT HURT REAL BAD.. like someone had literally dumped gasoline on me and set me on fire... and I was trying to run when every part of my body wanted to STOP DROP AND ROLL... I know it is hard for people to imagine that.. but that is what it felt like. It took so much to even step forward. Every inch of my body burned.. imagine a time when you burned yourself real bad and how bad that hurt... now take that burn multiply it by 1000 and imagine it everywhere... then try to run. Your bodys natural response is to try and stop the pain any way it can, and I really had to dig deep to keep going. I don't know how I was able to even move. I had to really focus on each individual step and IT HURT SO BAD... COMPLETE AND UTTER AGONY. I don't think most people understand and know what this pain feels like. All I can say is that for the first year I pretty much laid in bed screaming because of the pain. Oh God did that hurt. But at the same time I felt SO ALIVE. It got to a point when I couldn't even shuffle anymore... My body was fighting my mind. Keep running, just try ... at one point it hurt so freaking bad I started to laugh uncontrollably... ouch... it was funny to me how bad it hurt. Not to mention I could feel the blood soaking my foot and sticking my toes together on my right foot because of a huge blister/wound on my foot. It took me a while to be able to get used to that pain. Any wound on my foot brings attention to the other pain and it took probably 1-2 miles to get used to it and be able to run on it. At this moment, feeling DESPAIR, that I might have to walk the remaining 7 miles. It never occured to me to quit. Quitting was never an option. I did not fight so hard to stay alive, and fight for 4 years to be able to run again to quit now. The camera guys asked me I thought I would just walk the rest. I replied with a no. So I attempted to run again... OUCH OUCH OUCH, I laughed again and walked... a little bit went by: ok try again... OH GOD OUCH... mercy mercy.. there was none. So I walked a bit more, then I shuffled, walk, limped, shuffled... had a buddy who kept telling me to walk some then run... frankly i was totally bonked at this time, but I still managed to smile and laugh. WHY AND HOW??? Because I was there at that moment in time.... pushing myself to my limits, after a few miles of shuffling/limping, I all of a sudden got a 2nd wind. Maybe it was the combo of potato chips, sport beans, gels and energy drink FINALLY KICKED IN... or maybe it was my music urging me to. All the things i tell my clients and my spinning class, I was telling myself. So, I started running again... yay... at one point I felt strong again.. granted I was running downhill.. At that moment in time, I felt like I was flying... I was in so much pain, yet so much alive. I can't describe the feeling but it felt amazing. If I can run with this much pain, I CAN DO ANYTHING. I still can't believe I was able to move with that pain! I found out how much inner strength and determination I have because that was incredible. Throughout the whole race I was cheering people on, hooting and hollering Kate style, smile, laughing, giggling, and doing my best to motivate people even through the pain. You find a lot about yourself at times of extreme pain..

"There is advantage in the wisdom won from pain" -- Aeschylus

When I hit mile 24 I was running again and I could have kissed that sign! 2.2 miles left... I'm going to make it! It still cracked me up that I was running with the pain, bleeding feet, and the espn filming me at the same time... still funny to me. Mile 25... so close kate, every inch of my body was trying to lay down and curl up in a ball..no keep running... please dont stop. you are so close!!! Then we started to run downtown and I could hear the music. FYI cobble stone in sandals not that nice at this point... haha.. Then real close to the finish I saw my dad standing there, who normally does not show a lot of emotion, raised his left hand Kate style and let out a woohoo!!!! I CAN'T EXPRESS HOW MUCH THAT MEANT TO ME... He was taping me on film and I was totally crying... At this moment all the emotions started to flow through me... pure happiness, pure sadness, and self pride. Look what I just did!! They told me I could never run again. So many people told me I couldn't do this... AND I DID IT! The last stretch home I told myself what I tell my spin class: FINISH STRONG ALL THE WAY TO THE END... YOU WOULD BE SURPRISED AT HOW SOME RACES ARE WON THE LAST FEW MINUTES OF THE RACE. PRETEND THERE ARE CAMERAS THERE TAPING YOU.(in this case there actually were there haha).. YOU DONT WANT TO BE CAUGHT STROLLING ACROSS THE FINISH... RUN IT GIRL... RUN IT. YOU DESERVE THIS, YOU WORKED SO HARD FOR THIS... 4 WHOLE YEARS TO BE ABLE TO RUN... ENJOY THIS MOMENT. You may never get it again. When I crossed that line, all the pain, and the sorrow, despair, hard daily struggle, made it worth it! I JUST RAN A MARATHON IN SANDALS WITH THIS HORRIFYING DISORDER!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

This is to my family: Nana I love you so much! It meant a lot to me to see you at the finish line holding up the sign! Thank you for always being there for me. I know we have talked a lot about pain and hanging in there. I hope if I live to be 92, Im just as amazing as you!
Aunt Norma: Thank you for being my biggest fan! Thank you for all the late night calls and talks and always being there for me. I don't think I could ever express how much you helped me during those horrible horrible nights when I couldn't sleep and just wanted to die. You have always encouraged me, and let me be the person I am. You never questioned why I do the things that I do. Thank you for going out of your way to make the EM tshirts for me! Thank you for listening to all my crazy chatter! I love you so much! and to Tim : thank you for being at the finish line wearing the EM shirt! and thank you for being the best Card partner ever!
to my Parents: I know you don't understand why I do the things I do. I know you are worried about me and don't want me to hurt myself... but I hope that I made you proud during the race. I hope turned out the way you wanted me to. I know it has been hard on you with me being sick. I know how worried about me you were when I first got sick and you were scared that I was going to kill myself every night. You don't have to worry about that anymore. This is why I do the things I do...why I put myself through so much agony... so I can help others out there, to show them there is a way to live with this pain...to show them they are not alone in their suffering. I don't want to live without hope ever again... and I want to show them there is hope! Thank you so much for driving up to the race to be at the finish. It meant a lot to me and I can't ever thank you enough for all of your help. I just hope I made you proud. I love you!

This is to all the negative people who told me I couldn't do it. To you-know-who who told me there was no way I could do a marathon and who would rather die than watch me race: THIS IS TO YOU... HOW DO YOU LIKE ME NOW????????????????/ This is to the person who told me that "ONE PERSON CAN'T MAKE A DIFFERENCE".. you are so wrong! so very wrong! One person can make a difference!!!! and I'm proof of that! Lots of people kept saying: why do this if it causes so much pain... why do it? They just don't get it. LOOK WHAT I DID WITH SUCH A HORRIBLE DISORDER... I took something so ugly and turned it into something good. If I can just help one person , help one person and give them hope back, then the pain is worth it! So many times when people are in pain, the pain eats at them, changes their personality and makes them bitter. I never want to be a bitter person. I don't want my disorder to control me. I dont want this horrible pain to rule my life.. I FINALLY FOUND MYSELF... AND THIS IS ME.. HAPPY SMILEY GIRL WHO ENJOYS LIFE, and always pushing my limits, and enjoying each and every minute even the extreme pain. BECAUSE I AM ALIVE! I AM ALIVE! I HAVE ERYTHROMELALGIA, BUT ERYTHROMELALGIA DOES NOT HAVE ME!!!!!

I AM ALIVE!!!!!!

To all of the EM sufferers out there, and to everyone that has lost hope... don't despair! don't give up! Don't let the pain win and control your life. You can still do the things you have always wanted to do.. it may take awhile to achieve it, you may have to find a modification to help you. Try to enjoy life... find something that makes you happy. Lets make this invisible fire burn bright! Lets find ways to spread awareness. LET'S GET LOUD! LET'S BURN BRIGHT! Lets show the world what EM sufferers can do! because if we can live with this horrible pain disorder... WE CAN DO ANYTHING!!! What do you want to do??????

onwards and upwards for me... IRONMAN here I come... with better nutrition, and lots and lots of hearty laughter... haha WOOHOO!

Life, to me, is a series of false limits and my challenge as an athlete is to explore those limits."—Lance Armstrong

"When you were born the world rejoiced and you cried. Live your life so when you die the world cries and you rejoice."

ALL OR NOTHING

2008-05-01T12:51:00.000-04:00

"The best race pace is a suicide pace, and Sunday looks like a good day to die."

I can't believe its here! i leave tomorrow morning for the race! Oh and FYI, I did bring my running sandals and heart rate monitor home from work! haha ... No need for deja vu when it comes to that. Im freaking out a little bit! ACK! I can't believe I have come this far... ready to do a marathon. I probably wont be able to blog again until after the race.

Have you heard of the song Handlebars by Flobots?? Its a good song:

Look at me, Look at me
Driving and I won't stop
And it feels so good to be
Alive and on top
My reach is global
My tower secure
My cause is noble
My power is pure

Its pretty much a song about self confidence and how good it is to believe alive and you can do anything you want to.

"There will come a point in the race, when you alone will need to decide. You will need to make a choice. Do you really want it? You will need to decide."

I will end with lyrics from EMINEM "Till I Collapse" because I feel it is going to be appropriate for my marathon... haha

'Cause sometimes you feel tired,
feel weak, and when you feel weak,
you feel like you wanna just give up.
But you gotta search within you,
gotta find that inner strength and
just pull that shit out of you and
get that motivation to not give up
and not be a quitter,
no matter how bad you wanna
just fall flat on your face and collapse.

Until the roof comes off
Until my legs give out from underneath me
I will not fall, I will stand tall,
Feels like no one could beat me.

WOOOHOOOOOOOOOOOOOOOOOOOOOOOO!!!! IM SO EXCITED!!!!!

marathon nerves

2008-04-28T17:38:00.000-04:00

"I have spread my dreams beneath your feet. Tread softly because you tread on my dreams." W.B. Yeats

I am getting nervous and excited about my marathon this coming Sunday!! ACK! and its supposed to rain!! At least it wont be hot?? But slippery sandal running isn't much fun either... but rain or shine, 26.2 miles here I come. I will admit the anticipation of excruciating pain makes me a little scared, but the ability to bring awarenss to EM helps me deal with it. I just hope I can be a good representation for the world to see our disorder. I know I can do it. I believe, I believe, I believe! Yes its going to hurt, hurt real bad, but what else is new? I am used to it! I will not let it stop me! I will face my fears and follow my dream! I don't care if everyone thinks I'm slow!

"Fear is probably the thing that limits performance more than anything - the fear of not doing well, of what people will say. You've got to acknowledge those fears, then release them." --Mark Allen

woohoooooooooooooooooo!!!!!!!!!!!!!!!!!!!!

"Get a bicycle. You will not regret it if you live." ~Mark Twain

2008-04-25T17:53:00.000-04:00

"You're biggest challenge isn't someone else. It's the ache in your lungs and the burning in your legs, and the voice in your head that yells 'CAN'T', but you don't listen. You just push harder. And then you hear that voice whisper, "can" and you discover that the person you thought you were is no match for the one you really are."

I went mountain biking today and it was SO INCREDIBLY HARD.... There were very very big rocks, and branches and sharp turns and trees and insane uphill climbs. The thing about mtbing is you don't have any time to relax or think about anything except watch out for that boulder... It was so technical and scary!!! You have to be in control of your bike and at the same time let it go... if you are too tense and scared you will fall down, if you let it go too fast, you will fall down. Lets just say I did fall down alot but I am so determined to get better at it. I will admit I was quite scared. I have an phobia of crashing, but I decided to face my fears and try it. I did do some crazy parts, and I did try to jump up on this bridge but didn't quite make it. Once I let go and loosened up I did much better! I'm sure my riding buddy find it quite comical to watch a girl from Nebraska go mountain biking... haha He sure did laugh a lot, but so did I. What is that quote? Something about if a
"If a KATE falls in the middle of the woods and nobody was around to hear it does it make a sound? and the answer is YES , im sure everyone within a 10 mile radius could hear my squeals of delight, my cries of pain , and my uncontrollable laughter. i am so determined to get better at that... i want to jump on logs, over bridges and boulders, it feels like you are flying. It will def make me feel more comfy on my tri bike! Weeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeee! I can't believe I just did that!!!!! Who knew?

"All creatures who have ever walked have wished that they might fly. With highwheelers a flesh and blood man can hitch wings to his feet. "

"I'm not a passenger. I am the ride"

2008-04-19T12:46:00.000-04:00

“Live. More than your neighbors. Unleash yourself upon the world and go places. Go now. Giggle. No. Laugh. And bark at the moon like the wild dog that you are. Understand that this is not a dress rehearsal. This is it. Your life. Face your fears and live your dreams and take it all in. Yes, every chance you get. Come close.”

I love my life!! I can't believe I'm actually living my dreams... I still wake up and lay in bed thinking about the day I almost killed myself and all the amazing experiences I would have missed out on... And now I may have the opportunity to help save someone else and show then to not give up...yes you may be in extreme pain and things may seem they will not get any better... but it will! Hold on... the pain will be useful to you someday... My marathon is May 4th in Providence, and my story is going to be on tv@!!!!!!!!!!!!??????????!!! I am so thankful and proud to be able to put my disorder on tv... yes I will be running slow in sandals with a bright red face, but I run for all of us with EM and everyone who is sick > it doesnt matter if I come in dead last on national tv... Im doing the best I can with what i got.. and im going to love every minute of it, BECAUSE IM STILL ALIVE! and i'm thankful for every single day, every day I run, bike or swim... I have been through so many horrible, painful, heart wrenching days and nights without hope, alone, scared of growing old with this pain... but I kept going, kept trying, refusing to give in.. refusing to let EM get the best of me. THANK YOU THANK YOU THANK YOU!

Some days I feel so alone... no one to share these amazing experiences with, no one to understand how badly I hurt, how incredibly painul it is to run, to bike, to swim, to get out of bed each day. I try so hard not to show how much it hurts, but sometimes its hard to hide...there is only a few of us that know what the EM pain is like, and you cant really explain it to people... just how badly it hurts... and just the fact that i am even running at all is amazing to me... but they dont know... they think im slow.. lets see how fast you can run with this pain??????/ how fast can you bike??? I had to let go of my pride a long time ago... yes IM A SLOW RUNNER.... but I can bet that I enjoy it so much more than you... SO look out world, here I come!

I had the most amazing bike rides this past week. I have done some crazy biking!!! Lots of hill repeats, trying to keep up with semi -pro , pro, and fast cyclists... and Im doing pretty darn good for a girl from flat NE and with a pain disorder... I feel so free when Im flying down a hill, when Im climbing, just biking alone gives me some escape... When I bike and when I run, my disability disappears and I'm free. and that is why I do what I do... and if it is my destiny to do this alone, then so be it. I am not afraid anymore. Because if I can live with EM, I CAN DO ANYTHING! and so can you...

"I HAVE ERYTHROMELALGIA, BUT ERYTHROMELALGIA DOES NOT HAVE ME!"

i'm not a tomboy, i'm just better than you ;p

2008-04-06T17:57:00.000-04:00

"Hard things are put in our way, not to stop us, but to call out our courage and strength."

i did my half marathon this morning ~ 2:03. Considering all the stuff that happened this morning, that is pretty good!! Late last night I was arranging my stuff for the race and realized i grabbed the wrong bag at work, and my RUNNING SANDALS, HEART RATE MONITOR AND other stuff i needed for the race was at work and no way to get it before the race... ACK!@#!%#@^%#$% So i had a choice to make, do i try to run it in sandals that werent meant for running/ or do i use it as an excuse to not run the race. My legs are still so sore and tired, it was threatening to rain and anyone who runs in sandals knows that rain and sandals are not best friends!! it makes it even more slippery to run it. Not to mention that my hip is still bothering me especially during the crappy weather, and do i risk hurting my hip again so close to the marathon? Well the answer to ALL OF THESE NEGATIVE QUESTIONS WAS; to shut up and quit your wining, grab your non running sandals and do it. i have been through so many things, and i am not about to let something like that stop me. My non running sandals are to from now on known as 'cheese grater sandals' ... see below.

The race starts and THOUSANDS OF WOMEN are squished into one lane around central park like cows being rounded up... it was horrible... why do walkers insist of starting at the beg of the race when they should be in the back// it took me 6 min to even get to the start of the race, and then 3 -5 min to even run. So my first mile was 12 min!!!anyway, i was averaging 9 min mile pace which is great for me especially in those sandals... I was 57 min at the half way point and was cruising...it felt so good... until mile 7 when the bottoms of my feet had finally been grated to a bloody sole... owie and my poor tired legs started to charlie and i just kept on running. It is strange that before i got sick i would have been so upset at myself for getting tired and not being able to keep the speed, but now, i was just happy to keep running... i could have stopped, no one would blame me if i stopped.... MY FEET HURT SO BAD IN THOSE HORRIBLE SANDALS.... i hate those things... haha the last 3 miles were pretty painful just because i had pushed the pace so much the first lap... the hazard of not having a heart rate monitor on to see how hard you are going and slow down. the last mile i ended up doing an 8 min mile sprint home and my legs were screaming at me... I know i could have broke 2 hours if it wasnt for that 3 min cattle walk at the beginning... but who cares!!!! I DID IT even in non running sandals and i loved every minute of it.... marathon in one month!! i guess i would rather have all of that stupid blonde kate moments during this rate versus the marathon. LESSONS LEARNED; MAKE SURE YOU HAVE RUNNING SANDALS AND HR MONITOR BEFORE ITS TOO LATE... haha duh

“Obstacles don’t have to stop you. If you run into a wall, don’t turn around and give up. Figure out how to climb it, go through it, or work around it.”- Michael Jordan

Alternate universe

2008-04-04T16:28:00.000-04:00

"God has given me the ability. The rest is up to me. Believe. Believe. Believe."

Wow I had an amazing week! I still can't believe all of these great things are happening to me. It just goes to show that following your dreams, breaking through barriers, fighting all obstacles, and if you tough it out you can make it! There are so many horrible things that have happened to me, so many tears that I have cried, so much agony that I go through every day just to live, and yet I am happier than I have ever been.

Lots of hard work pays off. I am getting my own spin class in a couple weeks!! I guess there has been lots of positive feedback about my class, that the director said I earned my own class. :) :) I am really busy at work, and I love every minute of it! I love helping people and it just goes to show that one person can make a difference!

I did an amazing workout on Tuesday: I did 2 1/2 hours of hard biking then 1 1/2 hour run with a friend of mine around central park! Yikes were my legs tired. I didn't mean for it to happen... but I was needed as a sub. The run was fantastic! We dropped 5 minutes off of our time and my legs were fried.

Last weekend, I ran 3 1/2 hours!!!!!!!!!!!!!!!!!!!!! I ran over Queensboro bridge and all over the place and the funny thing was, the last 1 1'/2 was the best part. It only took 2 hours to get warmed up??!?!?!?!?!?! Either way, this means I can do my marathon next month!! yaya!!

On Sunday, I have my Half Marathon Race around Central Park. Its not gonna be pretty... my legs are so tired! I have been having charlie horses throughout my whole legs, and even glutes! I know it has something to do with our defective gene being the sodium receiver channel and my electrolyte balance. I do sweat A LOT OF SALT, and I need to make sure to take electrolyte pills. But, either way...half marathon here I come! Wish me luck!

"Being your best is not so much about overcoming the barriers other people place in front of you as it is about overcoming the barriers we place in front of ourselves. It has nothing to do with how many times you win or lose. It has no relation to where you finish in a race or whether you break world records. But it does have everything to do with having the vision to dream, the courage to recover from adversity and the determination never to be shifted from your goals."

GO GO GADGET LEGS

2008-03-28T18:28:00.000-04:00

"I will not last forever. But I am damn well going to know I have been here." George Sheehan.

Wow it has been an insane leg workout week for me. Several spinning instructors were either out of town and/or needed a sub this week, and I have also been running this week like a crazy person trying to get ready for my marathon coming up. Can we say OWIE??????? BUT, HEY, I WILL ADMIT... I LOVE THE BURN. Everytime I climb the subway stairs, or the 4 flight staircase to my apartment, everytime I show a leg exercise to a client... my legs are screaming at me for mercy. For example, Today I took the Bricks class at the Sports Club LA that Andreas teaches which is an 1 1/2, then they needed a sub for the 12:15 spin class that I taught. !! This was after a whole week of owie leg workouts... haha..
This weekend I am biking 3 hours or so OUTSIDE (YAY) and running for 3 hours OUTSIDE YAY.

COME ON GO GO GADGET LEGS.... Don't fail me now.

Kate Invasion

2008-03-09T16:40:00.000-04:00

"Feelin great because the light's on me
Celebrating the things that everyone told me
Would never happen but God has put his hands on me
And aint a man alive could ever take it from me"

I finally got some sleep last night, and it felt soooooooooooo goooooooooood. I have to make sure I am getting enough sleep! I have been so busy with crazy work hours and training that I haven't taken any time for myself and for sleep. Sleep is HIGHLY UNDERATED... at least for me. My body doesn't seem to bounce back like it used to before I was sick. I really kick my butt last week in training. I have been doing A LOT OF RUNNING AND BIKING. I have also been teaching Spinning at my gym and they are not used to the Kate invasion yet.

What is the Kate invasion you ask? It is my freakish positive attitude, unquenchable thirst for more, unwavering determination, and extreme giddy like Im on crack mixed with laughing gas happy go lucky passion and excitement for everything at all times of every day. :) Look out New York City cause Im on fire! Some of the spinners looked at me like I was insane, some cursed at me, and some did their best to ignore me. WHY OH WHY IS THIS INSANE GIRL TEACHING MY SPIN CLASS TODAY, I will not smile and I will not like it. They will see, they will like it and they will smile while they do it.. haha... But really, I am not changing who I am just because I am in a city where lots of people scowl and frown all day. I am me and I LOVE EXERCISING, and Im going to continue to hoot and hollar during my spinning class and kick your butt at the same time. So who is up for the challenge? My best friend Karen from Nebraska calls it the good virus. Anyone who works out with me will start exercising like a crazy person and love doing it. I guess I have a knack for motivating people? Who is next to be infected with Kates good virus?

"I run so I do not lose the me I was yesterday or the me I might be tomorrow. "

It is getting oh so close to my marathon. I am doing the Providence Marathon on May 4. I am getting more scared! How bad is that going to hurt? How much more pain can I take? What is my maximum amount of pain that I can take before I can't take any more. Everyone has a Maximum pain threshold and mine is already sky high, how much more can I take? I guess we will find out! So anyone else doing a marathon coming up, just think, it could always be worse, you could be me with your feet on fire in sandals trying to run. :) :) but at least I will be smiling! :)

"let us strip off every weight that slows us down, .....And let us run with endurance the race that God has set before us. "