Pinnochio Girl

"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 108 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.

“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!

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.

"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

"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.

PLEASE VOTE! LETS GET LOUD!

It is time for the voting to determine which 2 of us from the Cadence Kona Challenge wins a trip to IRONMAN Lake Placid! Please vote for me. I am doing the IRONMAN not only for myself but for all of the Erythromelalgia sufferers out there! Please help me spread awareness for EM and to show the world that an EM sufferer in sandals is going to do an IRONMAN.

Please send an email to triathletemagcontest@gmail.com with my name (CONKLIN). Cadence is sending 2 of us with an all expense trip to race Lake Placid this year for a chance to qualify for KONA. Only 2 of the 6 of us get a chance to go!

Come on everyone! Lets get loud! Lets spread awareness any way we can! Lets give voice to all the EM people who suffer in silence and undiagnosed.

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

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

"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

"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

"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. "