August 5, 2014

28 years later…

Tonight marks a significant night in my Dystonia journey.  I went to a dystonia support group, you heard it my secret is out!  Not that much to my surprise I teared up a little as I said my intro…My name is Carrie and I have had Dystonia for 28 years…that’s right 28 and not only that, 1 brain surgery, 4 battery changes, 1 wire replacement, 1 marathon and 5 half marathons later, I am here to share my story, to change those “I can’ts” to the I can!  So again to my surprise I had all these Dystonia patients come up to me and say you are amazing, your spirit is so infectious as you smile about this disease and I said I choose to use myself as a billboard of positivity and hope.  

So tonight was a reality check, when times get tough, I can go for a RUN, when times get real tough I can go for a LONG RUN!  I am one of the lucky ones as the surgeon at the forum said you are one of those star cases!  I am so thankful and grateful for everything I have and I am so glad I can use my words to create a powerful message.

ps #funfact – botox was created for Dystonia patients first, then they realized it can take away wrinkles!


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