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October 29, 2013

Posted on by Carrie Siubutt

Countdown continues..Thank you to a special guy in my life!

Today’s blog is dedicated to someone who always has been able to make me smile even at the saddest moments…Dr.T has been a believer in me and has always been supporting me in my choices.  He tried for years to get me to pursue DBS and I refused..Dr.T gave tried to give me medicine and I said with an attitude, “absolutely not, I have a Stanford MBA and will not fall asleep in meetings” and he smiled.  Dr. T never stopped believing in me and the day I walked into his office and can I do brain surgery in two weeks, again he smiled.  Dr. T has always let me come to my own conclusions, never questioned me when I said to him I just don’t feel right…he always responded then something must be wrong.  Dr. T has been so amazing on this journey with me, I owe you so much…there is not enough money in the world to repay you! Dr.T we will run a race together even if it’s just a 10K.  Dr. T thank you so much for believing in me and helping me always get to the right decisions…and always fitting me in, because I like to remind you that I really never want to see you 🙂

I also want to thank every doctor or nurse who have helped me along the way…thanks to Joan, Dr. Malhado Chang, Dr. Alterman, Tyler, my Chicago team, Irene and Bob two of the world’s best anesthesiologists…and everyone along the way. There is not one nurse I can’t thank for taking care of me in post op…There is not one person that doesn’t laugh at my jokes as they wheel me off and there is never anyone when I hop on operating table that gets upset when I ask to go to the bathroom (happens every time) just as I am about to go to sleep.  I know this journey will continue with on going battery changes and potentially broken wires…so I owe everyone that touches me on those surgical days a big thanks!  you always make my day…And those who know me too well.,.surgery days are when I am my calmest…when I know I have to surrender to the people that know best!  This picture and this smile sums it up best…Thank you to all the medical staff that show me love and attention on days when I am most scared!  This run would never happen without each and everyone of you!

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October 28, 2013

Posted on by Carrie Siubutt

Blessed, Lucky, 6 more days to go

Wow…first of all I had 109 hits today on my blog so all of you reading this today…THANK YOU!!

I want to write today’s blog as a thank you to my parents.  I have so many people I want to thank who have been on this journey with me but the two that are most important to me are mom and dad.  As parents you have been through so much with me and thank you doesn’t even do it justice.  Since I got sick at 11, you did everything to help diagnose this mystery disease…from seeing specialists and coming up with zero answers you never gave up.  Mom, you stayed up with me on countless nights holding me while the disease had me so tense and uncomfortable and just gave me your unconditional love.  You stood by me when I refused to take medicine because “mommy I don’t want to throw up”.  You never discouraged my from trying out for the drill team – you encouraged me and I did it!  You never once discouraged me from doing things, if anything it was always find a way, and I did..you never said, you have Dystonia you can’t…

I wanted to go to UNC and you made it happen.  I wanted to work on Wall Street and you said go for it!  I wanted to go to Stanford and you never doubted I wouldn’t be able to do it.  You never made me feel like i was disabled or that Dystonia held me back…You let me cry when the disease got worse…You were supportive when I still didn’t want to take medicine…You weren’t surprised when I called 2 weeks before and said yup I am going to have brain surgery or for dad the weekend before…Mom, you didn’t think twice about coming to take care of me.  Mom, you came to my little NYC apartment and said first things first we need a vomit bucket 🙂  I remember seeing you as they rolled me into the OR and smiling at me letting me know all was going to be okay.  I remember crying when you left me after the second surgery because I was so scared wondering if I idid the right thing and you looked back at me and said I know you are going to be okay.

And here we are 7 years later…you have seen me run, you have seen me flourish into the person I am today.  This retirement couldn’t have happened without your unconditional love and support.  As much as I have heated discussions with you both (also know as fights) you are two of the kindest people I know and I am happy to call you my parents.  When I run this weekend there will be no point on the course I won’t think about you…I love you mom and dad!

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Please don’t forget to donate…

http://dystonia.donorshops.com/product/sanfranhalfmarathon/runcarrierun.php

 

October 27, 2013

Posted on by Carrie Siubutt

Part Duex…

So today’s run and weather matched my sentiment, cold and dreary…I am starting to feel very sad about the end of my half marathon career.  But as I told someone today, as one door closes another one opens.  I never really set out on this journey to do 5 half marathons.  So in today’s cold, windy run, I started thinking how did this all begin…

2002- ” I still daydream about running a marathon and hope that one day they will find a cure for Dystonia.  What matters most? I want to win this fight.  I want to destroy this monster that has attacked my body.  And if I don’t so be it.” My Stanford Essay – not knowing what the future will hold…

2002 – 2005 – Dystonia worsens…

2006 – Deep Brain Stimulation and first 10K

2007-2008 – Multiple 5Ks and 10Ks

2009 – I decided I was going to run my version of a marathon (because I would never do a full!)  – 2 half marathons with a break in between – Thanks to Liz for Nashville and thanks to Heather for Chicago

2010 – 2 Battery changes and lots of life changes and about 4 stress fractures

2011 – Midnight 5K race, fractured metatarsal, failing battery, another surgery and the Chicago Marathon (as I write this, did that really happen)

2012 – 2 10Ks and many runs in Crissy Field – goal to do a half marathon in November- Battery started failing again, walking with a cane

1/1/2013 – today : Battery replacement, wire change, 2 completed half marathons with a PR on October 20th.

Today’s run – hard, taxing, sad, getting ready for the last, the one that will be the most memorable, running over the GG bridge – one of the prettiest sights in the world, friends, medal, hugs…

When I set out on this journey, I would have never believed the ups and downs of DBS.  I have done more than most have…Running 3 half marathons in one year – seriously a miracle…So this week will be bittersweet…It may be foggy and it may be cold but next Sunday it will be sunny in my heart and soul – I have to say I am truly lucky to have had the luck to spread the word that people who are disabled or crippled can be athletes too…This is me..Carrie – an athlete true to form and as I start my taper week, with knee pains and toe pains (and am aggressively icing)…I am getting very sad and can’t help but cry everyday but on the other hand, I am truly happy that I took that leap of faith to listen to Dr.T and Suzie and fight my Dystonia with DBS.  This year has been a roller coaster for me, but the lesson I truly learned in all of this, is that I want to take care of me and be able to run for the next 50 years!  

To everyone that has been inspired.  Thank you, you have inspired me as well!

 

October 27, 2013

Posted on by Carrie Siubutt

Stanford Business School…Friendships made forever…

I was fortunate enough to meet some of the best people when I went to business school…and little known secret when I went to school here I was so frustrated – frustrated because I couldn’t ski, hike or do trail runs…but the kindness of these strangers never made me feel less about myself.  Someone always didn’t like one of those activities and stayed behind with me.  What also was an awkward painful part of myself, everyone made the handicapped parking pass – the VIP pass.  They were always rebranding my Dystonia and instead of making me feel any more handicapped or any less worthy to be their friends made me less conscious and quite frankly – cool!  Don’t give me wrong, there were some assholes.  But when I learned that knowledge is power, I would explain why I limped or why I got upset when you used the word “retarded” and then people would change their point of view.  So I used my time at the GSB to be an influencer, to use my skills to influence people to become better.

So here we are 10+ years later and from not being able to walk far to crossing a half marathon finish line.  I am truly excited to be retiring from this journey in the city where I met some of my best friends!!! See you all at the finish line!!!!

It is truly my honor to have you there!

The countdown begins….

October 24, 2013

Posted on by Carrie Siubutt

Mixed emotions..Retirement…

This week has been really, really tough.  I have been exhausted beyond belief.  I have been in bed early every night since the half.  I realize now why I am retiring.  Running these half marathons are really, really tough.  I think the Nike Half was hard because I was by myself.  Because I had to think of every step by myself.  Usually when I run with a buddy, I can pace myself with visual cues from them running next to me…and this for those of you that don’t know, running with Dystonia for me has been particularly challenging.  I think of every step, I make sure I don’t introvert on my right foot…it’s a process and one that takes me about close to three hours.  I ran last night and I can tell my body wasn’t happy.  I am running literally on fumes.  I am trying to take it easy for my next one in less than nine days but it I have to say it is best I stop running these long distances.  I was so conflicted about it on Sunday, I really started to go down the path that I don’t need to stop, why now? I am in the best shape of my life and can do more…but then Monday rolled around and I remembered why….I want to be able to run forever so why jeapordize it by wearing myself out now?  It is what is best.  I don’t need to run 3 half marathons a year to prove I am a rockstar…I just need to be fit, strong and healthy…and that can be done in a healthy manner…but I will be honest I cry every morning thinking this will be my last half marathon…I have made a vow to not cry when I run across the bridge but be happy I had this realization before my dystonia got worse….

On the other hand, I am very excited for the race because my friend John is flying from NYC to run with me.  He had always said he wanted to run a half with me…that was his dream.  What an honor for a friend to say that!  Then one day I get an email saying – kiddo we are doing this!  John has been on this journey with me for 11 years, he has seen me go through many cycles of sadness as my Dystonia progressed…he doesn’t even know this but when the disease got worse, he gave me a book – “When Bad things Happen to Good People” and I have slept with that book next to me for the last 11 years.  John you are completing my dream to run with my bud JJ!  I am gearing up for a finale I am sure I won’t believe…my friends Carolyne and Heather, have teamed up with my sister to make this course fun along the way…I can only imagine the mayhem along the course and I will laugh the entire way…

…and to Suzie, this run is for us!  I know running has always been something you loved as a little girl.  Running with daddy as I stayed at home and read a book.  I realized 6 weeks ago these running legs have been yours and mine…You have inspired me to be the runner that you were meant to be and your courage to go through all life has given you and still be able to smile.  I thank you for always giving me advice when I feel like my batteries are failing or when I just don’t feel well.  I am excited to see you at the finish line…I am excited you get to finally see me run it has been one of my dreams to give you a big hug at the finish line!

To mom, dad and all my friends, you are all amazing, without any of you in my life, I would not be the person I am today…Thank you everyone for alway believing in me..more to come as I rest up for my finale…I’ll leave you all with one of my favorite moments!

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October 20, 2013

Posted on by Carrie Siubutt

I finished.

I finished strong.  I finished in pain.  I wheezed the last mile.  I was tired.  And for that whole last mile I listened to Journey’s Don’t Stop Believin…I never stopped.   I kept on hearing the line “some will win, some will lose” and I was going to win.  I was going to run through the pain.  For about 2 minutes I actually couldn’t breathe…I was going so hard I had to do this.  I had to do this for me.  I never stopped believing.  The tears started at 7:15 and ended at around 10:30…Different points or places I ran by brought tears of sadness and joy to me.  It was cathartic for so many reasons.

I would feel the blisters on my toes and then I would hear Imagine Dragons – “On top of the world” and that’s how I felt.  Sitting on my couch with blisters, a strained muscle and sore lungs, I would do it all over again.  I did this one for me.  When “that’s what friends are for” someone special texted and said – “go carrie go”… I couldn’t have imagined a more perfect race.  The end was a bit chaotic and I was slightly overwhelmed and out of sorts with the crowd but amongst the 30,000 people I held my head high.  I wear my medal today with extreme pride…And as amazing as this race is/was…it also reminded me that my last one is coming up…At mile 8, I started thinking why I am giving this up I am so quick now…and then I decided me like MJ, retire on top…shine, win my all-star medal and bow out…I want to walk forever, I want to keep on running so why push fate, why push my robotics…so for 13.1 miles today, I smiled, I hi-fived anyone that put their hand out there, and I thanked every cop and every sign maker for making this one of the most memorable races.

I have to admit I was going to wait a day to write this but I want to capture every single raw emotion I feel right now.  To that hill I was so afraid of …I ran you!  For that sneaky pain at mile 10, I never stopped; despite the fact you caught me by surprise.  The calf cramps you weren’t going to stop me.  And DYSTONIA you sure weren’t going to sneak up on me today.  In fact you motivated me to prove that I just had to put the work in.  Keep my head on straight and one foot in front of the other.  For a split second I remembered San Diego  and the 3:09 that I finished in and today to get to 2:50…I am not sure what else to say other than – Amazing.

I am truly a finisher.  And I have to say when I crossed that line, the only person I wanted to hear was proud of me was ME…so Ms. Siu Butt, you killed it today on the course, your fastest race yet, you smiled and you amazed yourself and your family and friends.  Thanks for a good race!  It may be your first and last half marathon by yourself but it was everything you have always dreamed about…Miracles come true and you never gave up!  Simply amazing and I am proud!

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October 18, 2013

Posted on by Carrie Siubutt

Dear Carrie-

It is here…You are less than 40 hours away from your solo half marathon.  You acknowledge the fear of doing this alone but you also acknowledge the work you put in to be here today.
You set a goal to lose 25 pounds by the Nike Half…You lost 23.  You worked hard on losing those 23 lbs, you changed your diet, you cut your drinking by half and the results show.  At girls’ weekend several weeks ago, everyone was shocked and said- where are you? look at those legs!  You hadn’t noticed the change other than your clothes being bigger but others did and you never gave up!
Life is funny, remember how sad you were when you didn’t get in the Medtronic race.  Looking back, that race wasn’t meant to be…this one is.  You have always wanted to run it and you got in…be happy for that.
So it is race weekend.  You are completely nervous, but you are running in the city where you found yourself, where you fell in love, where you found your best job ever, where you found some of your favorite running and hiking spots – Crissy field, Marin, GG park.  Think back to Tough Mudder when you were so afraid of the hills and that stranger said – “You are bigger than those hills everyday” – channel that feeling.  You have been through so much this year and every time you thought you couldn’t go one more step or one more day your friends and family made sure to get you over the hills.  The hills, will go away, the flats will come…this is no different from life.  You learned this year that sometimes when you reach that hill, you have to believe in yourself not have others believe in you.
You believe in you today.  Pace yourself, smile when Flo Rida comes on your headphones, laugh at the hills, take a moment and high five a spectator, look cute (I know you will) and smile at the finish line…You worked hard for this.  You trained for this.  Remember accapella tunes, butt wiggles, friends knowing you can do it.  Nothing can stop you. Mom, Dad and Suzie are proud of you.  You have done more athletically than most of your friends have, and YOU have Dystonia.  You are your best cheerleader in this race. Be present in the race, soak up the energy, this race was meant to be part of your life’s journey, so enjoy it.  You are a bad ass, people look up to you, be the amazing person you are.
Remember as someone once told you, you inspire people and make them do miraculous things!  Another friend also reminded you – you are many little sick girls’ hero, so you don’t need somebody to run next to you because you did all the work week after week.  Bruno Mars reminded me today – I am amazing just the way I am!
I am rooting for you!  See you at the finish line and you aren’t finishing last 🙂 Also remember there is a Tiffany’s necklace at the end!  Work it girl!  Surrender to the hills on miles 6-8, keep putting one foot in front of the other, don’t give up.  You went through many highs and lows this year and look where you are today!  You are bigger than those hills and you are simply AMAZING!
You deserve Sunday and all its glory!  And when you cry, those are tears of joy, of being proud, of being YOU!
Smile!
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October 13, 2013

Posted on by Carrie Siubutt

Keep smiling, keep shining…

SO we are one week away from race day and for all those of you that have raced with me….knows how i get race week and esp race day…I am getting those butterflies already for so many reasons, the hills, the fact that I am racing by myself but I am going to think about the song – that’s what friends are for….my friend Heather will be coming out to cheer for me and those of you that have nothing to do at 8am at the finish line, come cheer for me…but all kidding aside these last 3 weeks are the 3 weeks for me to smile, for me to shine and for me to lean on my friends and just surrender to race day, surrender to the crowd, surrender to my inner strength…

But more than that, I surrendered myself to fate on April 4, 2006 and if anyone had ever told me I would be one of the lucky 30,000 to get chosen for the Nike race, I wouldn’t have believed it…so I surrender myself to what race day will bring me, and I do know I will keep smiling, keep shining….

here is the link to the video…http://www.youtube.com/watch?v=xGbnua2kSa8

October 7th…

Posted on by Carrie Siubutt

Life beyond running..

You never know what life is going to bring you some days.  I had the opportunity to go away with 20 of my female classmates and came out stronger due to the experience.  My friend Maria, looked over and said Carrie do you want to go paddleboarding and I said sure, why not.  I didn’t think twice about dystonia or the balance that I would need or that you are navigating a board in the sea, I just said yes…Four of us went to a cute town in Capitola and it was a perfect day!  We went around 4pm and my friends went on the board and then it was my turn.  

As I tried and fell in the water, I started to say “I can’t….”and was cut short by Tim my instructor…He said Carrie, I have vertigo, don’t let whatever it is hold you back.  You can’t miss out on this beautiful experience. So I said you are right, tried again and fell and then decided let’s do it Carrie’s way…and I did…dropped on my knees and paddleboarded on my knees…I am so glad Tim told me to try…and oh by the way on your knees is pretty difficult as well…

But what I saw words can’t describe….the sun setting on the water, an octopus swimming to my left, a 4 foot sea otter jumping out of the water right next to me and seals bopping around me all the way…I thought to myself – this is life. I will remember this moment, this complete tranquility, and I always remember I can do anything I put my mind to!  I am so glad I tried, it was such an amazing experience…as we came in Tim asked do you want to try again? Without even thinking, I said yes, and I got up and I did it!  It was so amazing…

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I want to thank my friends for believing in me – Maria, Olivia, Gillian – you gave me a gift no one can ever take away from me. I love this adventure you gave me, the gift of feeling so amazing and so one with the ocean – without even knowing this, this experience profoundly changed my life.  Thank you for giving me such a gift!

…and I dedicate this blog to someone I knew whose life was taken too early, Alissa you left us too early…the sunset that I saw over the water was your spirit going to heaven, you were so wonderful and beautiful, your smile will never be forgotten!