MARCH 28, 2011

Posted on by Carrie Siubutt

Friends. Excel Spreadsheets. Laughter. Ocular Migraines

I have to say this week is a little like reliving the week prior to surgery five years ago…FIVE!! I can’t believe it.  This week’s post is about the importance of friendships and how the strength of  girlfriends and friends really can take you through the journey of life.

At this point 5 years ago, my mind was made up…I was a week away from surgery.  I remember that this day (or maybe tomorrow) I had my first ocular migraine, even though at that point I thought I was going blind.  I remember laughing in my cube thinking great in 6 days, i am going to shave my head, have two holes drilled in my skull and now I am going blind too…I remember breathing and after an hour of doing work with one eye open it went away…because I just started thinking relax, it is going to be fine you won’t be alone…

and i wasn’t alone…I have many to thank….

Melissa – I still saved the spreadsheet…

Melissa, I will never ever forget this spreadsheet, it was the spreadsheet of when people could visit…Gillian – the Flinstones vitamins are still one to be laughed at and I remember you were my first walk…sorry if I scared you as I almost fainted in Barnes and Nobles..Delaney and Ellen – you were fabulous in WINY!!!

I have to give special thanks to Ilana, Gabrielle, Liz, Joyti and Heather…you were all so amazing with all the help prior to surgery.  Keeping me sane, keeping my spirits up and as much as I know you all thought I was crazy for doing this; you were all supportive knowing that I was trapped in a body that I had no control of…yet always saying what limp?

Without my friends and the spreadsheet going around, I don’t think I would have been able to go in as strong as I did to brain surgery…I remember I had a dinner Friday before the surgery with many friends..the Last Supper – I called it…I remember I called it that not because I thought bad things were going to happen at surgery…but because I wanted it to be my last dinner with friends where I could barely walk and fall over myself…

Fast forward 5 years later…and as I did yoga yesterday and lay in shavasana I started to cry, not really sure why..I just did.  I remembered that little girl at age 11 whose foot was so contorted that she couldn’t sleep.  My foot so violently spasming that I had to call my mother to hold me all night as I tried to fight something over taking my body and crying…today, that little girl runs for every boy or girl who has a night like I did at age 11.

Thank you to all my amazing friends who supported me and nursed me back to health and cheer me on everyday!



MARCH 22, 2011

Posted on by Carrie Siubutt

Sisters, Dystonia, Love, Adoration, Learning to Accept

Today is my sister’s birthday.  As I chronicle and remember 5 years ago when I made the decision to have brain surgery, Suzie was a major factor.  We were the closest of the sisters…then Dystonia came in and attacked my body and then 3 years later literally destroyed my sister’s essence of who she was.  I tell my mom all the time you couldn’t have two more different children…I failed ballet class, Suzie held the fastest mile at age 10…Dystonia barely affected my laziness; Dystonia destroyed my sister’s hope of running a marathon.  Dystonia barely attacked my body; Dystonia ravaged Suzie’s.

Fast forward and Suzie opted for DBS 8 years ago..at that point still unclear how crazy the surgery was or the risks…it was a last resort for my little suz; she needed some form of relief..botox, medicines, none of them worked and more and more her life was one of a wheelchair…she opted to go for it and take the risk, why not?  She was already living a life in a wheelchair, could it get any worse.  She paved the way for many others…she became a walking billboard for why everyone should do DBS..she changes her battery every year, she has had at least 3-5 brain surgeries but would tell you DBS saved her life….

Here we are 8 years later, she just changed her battery last week and is celebrating her birthday….I asked her last week to nominate for the Medtronic Global Heroes program and this was her reason why I should be a Global Hero…To Suzie, you are my hero and a hero to many others, I love you!

“Carrie has always been someone that I looked up to not just because she is my big sister, but for her courage and strength in facing adversity and putting a positive spin on life. I watched Carrie show symptoms of dystonia and wonder why this was happening to her. Never did I think that 3 years later I would follow in her footsteps.

I underwent DBS before she did because my symptoms were a lot worse than hers. After 3 years of trying to convince her that deep brain stimulation would change her life, she finally took that leap of faith with the support of her doctors, friends, and family. Within months of getting “turned on” she had set a goal that she wanted to run a marathon as she had always dreamed of doing, but never thought it would happen. Her first half-marathon she ran for herself and her second half-marathon she ran for me. That was her version of a full marathon for 2009.

Carrie has inspired me to train to run/walk in my first 5k in December 2011. She has inspired and touched many around the world. She is not only my hero, but a hero to many that she has never seen or met. Her blog has shown many that Dystonia doesn’t define a person, but it makes you the person that you are and strive to be. She has also shown that you can do anything you put your mind and heart to.”

MARCH 16, 2011

Posted on by Carrie Siubutt

Research.  Donations.  Medtronic. 5 years old

I have to write this post today because I had a little surprise.  Medtronic featured me as one of their “victory” stories.  I am so honored and pleased.  I never receive emails as such and to be considered a victory is quite a little honor for me.  I have come such a long way.  When I 11 years old and the doctor told me we don’t know what you have…and then looked at my parents and said maybe it is in her head, I thought I would never have the opportunities I do today.  I had the resolve to keep my head down and just succeed at something – school.  I learned how to build a wall around my heart – don’t get your feelings hurt be people looking or staring  I always told myself.  You are smart prove it in school, college, get into Stanford and then kick butt in your career; who cares what they think…they are not as smart as me….

Fast forward 25 years later, 25, and the situation has changed.  I have Dystonia.  I had Deep Brain Stimulation – DBS.  I had my batteries changed once and I know I have many more to come. Without people that have donated money along the way, doctors who have dedicated their lives to movement disorder research and foundations that work effortlessly to help find cures, my world would be so different today.  Researchers that sit in labs all day working on different permeations to help find cures and alleviate symptoms until that cure is found, thank you.  Medtronic – Thank you.

I am learning how to tear those walls down in my heart.  No one is staring anymore because of a limp.  And to those lucky patients, hang in there.  I know the feeling.  After 5 years of this transition, everyday is still new to me.  I still get incredibly frustrated in the gym when  I can’t touch my toes and still fall because I have awful balance.  Or emotionally still can’t see the person that everyone else does because I forget what it is like to not be stared at on the street.  Acknowledge the bad days, grieve them and then look in the mirror, look at your scars, remind yourself you are a survivor, smile and always remember tomorrow is a new day!

Here is the link on the Medtronic website….

http://www.medtronicdbs.com/dystonia/patients/gallery/carrie/index.htm

MARCH 9, 2011

Posted on by Carrie Siubutt

DBS. Brain Surgery. 5 years ago. friends. ocular migraines

5 years ago, I walked into the doctor’s office and said I am ready.  Ready for what was his response…I said for you to drill two holes in my head and drop some wires…let’s just do it.  What I didn’t say – was a friend didnt live life and decided to take her own.  I wasn’t going to let that happen to me.  No matter how the cards turned out.  I had an option to be a cripple, be a freak or try to have the DBS procedure.  This was one very near and dear to my family.  My sister ended up having multiple brain surgeries and it took a toll on my family.  Quite frankly, I didn’t tell my dad until 2 days before that i was going to have 2 wholes drilled in my head and who knows what fate will bring me.  The road was not an easy one.  Friends trying to convince me they didnt see a limp, it wasn’t that bad and did I want to risk paralysis.  What they missed what the alternative, I was living in a body that I didn’t know, one that I know had more potential and one that I knew could change lives.

DBS worked for me.  I love my battery changes.  I love my scars.  I love that I can say I broke my foot RUNNING.  I love that I finally got to wear heels.  But more than that, I love that I can use my good fortune to spread the Dystonia cause with every smile and every race.  As I reflect upon my journey 5 years ago, when i swore I was going blind because I got an ocular migraine because I was so scared or because the thought of being bald embarrassed some of my friends – I can truly say I would do this again.  By no means was it an easy journey but it was worth it.

I would love to give so many shout outs to friends that were on the journey with me and think that will have to wait for the next post.  This one is about me making the decision to roll the dice and let fate take its course.   I love that I took the jump and sometimes we all make excuses why things shouldn’t happen but sometimes you just have to live life and make it happen….

February 28, 2011

Posted on by Carrie Siubutt

new month.  regroup. less stubborn. friends

This broken foot has been harder than I thought it would be.  It is healing and I need to stop being stubborn.  I swam this weekend, I rode, all at an easy pace yet enough to sweat.  I started to tear up on my ride that I wont get 26.2 this year, then I remembered October 9th…the woman from behind that reminded me that I am bigger than this hill.

Life is a series of rolling hills – there are amazing moments and there are moments when you have to pick yourself and rebuild.  I am on a climb right now.  I just need to remember to rebuild myself stronger.

Just recently I was telling a friend, I am planning to run a marathon later this year.  His response was Carrie – remember what happened last time you pushed yourself…That one statement was quite profound – because in my head i heard myself say yup I broke my foot and pushed my body too hard and ended up with minor tremors.  So the motivation I spent all weekend thinking about was why?  Is it because I was trapped in a body for 30 years? is it because i have something to prove? is it because I just want to run for all those that can’t?  Is it because 5 years ago today I decided to have brain surgery?  I don’t really know, what I do know is that I need to do 26.2 miles, not for a time but to remember how lucky I am to be able to afford the opportunity to run.

I know everyone asks these questions because they care.  The ones closest to me have seen my through my tremors, helped me fill out paperwork when I can’t even hold a pen…and these questions are because they don’t want me to damage myself…I get it.  On the eve of turning 5 this year, I am learning to listen to my friends and my body, DBS isn’t magic and the disease can still be deteriorating.  I have stop fighting to prove to people I can run…I have dystonia, I decided 5 years ago to have brain surgery and my life has changed ever since..

 

February 21, 2010

Posted on by Carrie Siubutt

I am disabled.  I have a rare disease called Dystonia. I am LUCKY.

I am disabled. It has taken my 24 years for me to say this.  I have spent my entire life as I know it making up every excuse in the world why I had a limp or walked funny.  Today this changed.  Rick Staab, founded Tyler’s Hope and presented the team at UF – Shands a check for $1M to fund further research.  My family and I know this hospital all too well my sister Suzie has been and out of this hospital for multiple brain surgeries and battery replacements.  Today it dawned on me how lucky I was.  Without the help of so many foundations – DMRF, Bauchmann Strauss, Tyler’s Hope to name a few, I could be in a wheelchair today living a life in wheels.  Instead, I am always training or putting on a fancy pair of heels because as I told Dr. T the week before surgery – “if this thing works I will always have the cutest shoes” (much to my parent’s dismay).

I am lucky. I have an amazing foundation.  I have an amazing life. I have been fortunate to attend 2 amazing educational institutions, work at amazing companies, travel the world and most importantly have amazing friends and family.  I have parents that have always supported in me in things that most thought I couldn’t do.  I have a beautiful sister though struck with much worse Dystonia than me supports me every step of the way in my endeavors.  I have amazing friends – I always remember they day when one of them said what limp? as i could barely finish walking a NY block in less than 30 min.

I have Dystonia.  I am thankful to everyone who has ever supported Dystonia research.  Thank you, without your donations I would never be able to think of running a marathon.  When I cross a finish line, those are tears of joy.  Most don’t realize that every run whether a 5k or 26.2 means I have to think of every step.  Running is a gift for me, a gift most thought I would never have.  Thank you to all the donors and families that make running for me possible!  Tears are in my eyes as I write this, but those too are tears of joy!

February 19, 2011

Posted on by Carrie Siubutt

sunshine.  boot. inspiration. positivity. inner child

Life is full of so many ups and downs and appreciating what everyday gives you – a ray of sunshine, a random smile, the ability to help others.  As kids we always think life is not about fear – we did what we want when we wanted.  As adults we believe in the rules and play by the books.  Sometimes you need to go back to your inner child and remember to giggle and work with your limitations.

I remember when I was 11 and realized something was “wrong”.  I was misdiagnosed for years and lost the ability to write with my right hand so guess what I did – I learned how to write with my left hand.  So simple. So easy.  Today I would make every excuse why that would be a bad idea and talk myself out of trying something new.  I am trying to go back to my inner child to rediscover the word – creativity and imagination.

I got permission to take the boot off and try and ride the bike…of course I want to go all out and am trying to channel my inner child and have a flat course be fun, be exciting and work with what I have.  So I am taking this small gift to be able to ride and swim and be excited, realize it is a small step towards running again!  I am learning that I put these ridiculous goals on myself sometimes.  A friend of mine said to me yesterday – do you know how much you inspire me? how much I love your positivity?  Historically, I would have made many excuses as to why I am not an inspiration but instead yesterday I said thanks!

Find your inner child, look for the rainbow, work with your limitations.  Yes there will be “hard days” but those days test you, try your strength.  Be strong, recognize the impact you make on others and ALWAYS, ALWAYS laugh and smile everyday!

 

February 9, 2011

Posted on by Carrie Siubutt

When I first started doing races, I didn’t understand why people did them. I thought it was boring. But give it a try. If you’re new to the sport, or maybe even an infrequent runner, try it. Once you do it and finish a race, there’s such a feeling of self-accomplishment—that’s really been one thing I’ve taken away from doing running events. Because it’s just you, and you have just yourself to credit for doing what you did. It’s always a great feeling afterward, because you know you did it all yourself.

Mike Bettes, Meteorologist, The Weather Channel

I saw this quote the other day and it resonated with me…The last week has been an emotional roller coaster as some of my closest friends are concerned about me running 26.2 miles..The marathon is more than just my own ego or me wanting to prove to everyone that I can do it.  I understand the risks that come with training.  But I made a promise to myself this is not about time or proving anything.  This is about me finishing 26.2 miles and completing a dream for me and the 300,000 people affected with Dystonia.  Dystonia is not a reason to not work out or not try to achieve goals, it is just the way you go about defining and setting those goals.

The Doctor’s today did a segment about dystonia and dbs…I warn you the video is not for the faint of heart…but it is a great resource for those that would like to learn more about Deep Brain Stimulation.  As Alex says in the segment it is not a cure, but it is a way for people who suffer from Dystonia get a reprieve to allow them to function as best as possible in society!

http://www.thedoctorstv.com/videolib/init/3562

I hope that I can use my running and my passion for life to help raise awareness for this disease and help raise money to fund continuing research and to help find a way to cure Dystonia!

February 2, 2011

Posted on by Carrie Siubutt

Snow.  Dreams.  Go Big.  One.

Today when I woke up the entire city was blanketed with snow.  As I looked outside the window and saw the flakes falling, I felt as though I was looking into a snow globe and as the winds gusted and the flakes swirled, I kept on dreaming about what I wanted to do this year.

I wanted one, one big race….



and so it happened…I decided that this will be the year that I cry after 26.2 miles…and it begins…Chi-town, this is my homecoming, I will be ready for you on October 9th!

January 23, 2011

Posted on by Carrie Siubutt

Remembering, learning and still believing.

Ahhh the broken foot – there seems to be no improvement with this foot.  After almost three weeks in this boot it still hurts as much as it did on the day it happened.  I woke up slightly sad about it.  Not running or cycling is making me nuts and putting a lot of pressure on my right leg.  Yes, I am still training and doing pilates,  but I feel as though I am getting further not closer to my goal.  Yet within the hour of that feeling a friend wrote me and said – hope the foot is healing but  if anyone I know is going to get this marathon done is you 🙂 .   As she wrote running is a mental game and if i know of anyone that has this its you!

Life is funny that way, within an hour of feeling sorry for myself a random friend wrote me and said “You got this!”  She is right – I have this!  I have lived always believing in myself whether it was getting into summer camp, college or business school. I  have always believed I could beat all obstacles.  I am a fighter, I work hard, and I truly believe in myself.  The broken foot may be a setback, but this too shall pass!

Believing in myself, taking care of myself, surrounding myself with an amazing cheering squad and laughing everyday, those are the keys to my happiness and success! Oh and I always shoot for the moon and run to the stars 🙂