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 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!