November 30, 2013


I had a way longer drive than I expected in the car today and my mind started to wander and finally it came back to here…my blog…I was thinking what lessons did I learn this month?  As most people know I always like to reflect about lessons learned and many come to mind but first and foremost – I am amazing.  I am awesome.  That simple.  I learned that lesson a little bit of the hard way but I get it now….

So November has been interesting I felt like I went from hero to zero..I started out the first weekend with a bang running my last and final half marathon and killing it in 2 hours and 40 min and all the while I was running and enjoying every minute I kept on thinking please don’t let what I think is going to happen next happen….by 1pm, I felt that tremor in my right pinky and by 10pm that night full on tremor and completely twisted…And from that day on it kept on getting worse my worse nightmare…Slurring, eye issues and then finally the cane..but after a doctor’s visit I can say I am back to 90%…I am okay with that…I still wake up in the morning with tremors and try to shake them off as much as possible and still have a slight issue with the left but if 90% better is all I get then I am going to be grateful for that.

What did I learn?  If I can digress for a second…I am not a fan when people say “Dystonia sucks” ; it actually makes me sad.  I think of my dystonia as a gift and a little curse every now and then.  I have been able to take a disease which I got at an early age and with the miracle of science been given the gift of running.  I have so enjoyed running for those that can’t…or at least that was the point of this journey.  Little did I realize I would inspire those that can…I have friends from near and far that have said thank you for inspiring me to run my first 5K and someone even ran their first marathon after I ran Chicago.   So Dystonia, has been my gift that I give endlessly and around this world to try something whether disabled or abled…

The curse has been that I have tempted the DBS science once too many times, marathons, tough mudders…but I have learned all too well now that I am human too and that sometimes your disease can beat out the science…so why tempt fate?  Even this morning I was happy with my little run albeit a little slow and a little limpy on the left side but I didn’t give up…I set a 3 mile goal and I made it…Secret – I was so scared, it was my first run since the half marathon and I didn’t know if my legs were going to be able to do it…So I too suffer ups and downs, but it doesn’t “suck”…it’s part of my life’s journey.

I often forget how far I have come and the night before my doctor’s appointment on the plane ride down; I watched this video to remind myself that DBS has been more than just a success it was nothing short of a miracle.  I remember tears streaming down my face thinking did I screw it up? Did I push the stimulators too far…and luckily I know now I still have another chance.  So what did I learn?  I learned that I am amazing, that I took a frown and turned it upside down…Don’t give me wrong, I did throw myself a little siu pity party for a little, but I am realizing now that this is me – Carrie – I have black hair, a great sense of humor and Dystonia…wait you haven’t heard of that? how long do you have 🙂

And to my little sister who teaches me more and more about Dystonia everyday; good luck on Thursday and I know your battery change is going to go well!


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