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Staying positive

Staying positive through everything has been the hardest part of this journey. It’s been harder than the pain, the trips to Boston and Albany, the surgeries, the appointments and the therapies. When you deal with something for so long, you start to change the way you think. Being negative was making me depressed and anxious because I kept having thoughts I was never going to have my hand back. 
At the end of May I had surgery to fix all the tendons that were damaged from being contracted for so long. I was expecting an immediate fix and it didn’t happen. It’s been 6 weeks since that surgery and I still can’t bend my fingers. I got the pins out this morning and was told my hand is in spasm in the opposite direction now, making my fingers hyperextended. I now have two different kinds of braces to wear to prevent them from hyperextending and many exercises to do several times a day. Lately I’ve been wondering if my hand will ever be normal again and some days I question whether or not I should have gone through with the surgery. 
I’m sick of Dystonia. I’m sick of the problems with my hand. I’m sick of doctors and I’m sick of people identifying me only by my Dystonia symptoms. Yes, I have a medical condition but it does not define who I am. 
One of the things that I’m most annoyed with is that if my broken DBS was fixed in the fall of 2017, my hand wouldn’t be like it is right now and I 100% believe that is the doctors fault in Boston. I’m hoping my story will help others fight for what needs to be done and hopefully I can get more people to go see my neurologist and neurosurgeon in Albany. 
So here I am, still fighting and staying positive and I thank you all for standing by my side through all of it, especially Jim. You have been my rock, my shoulder to cry on and my best friend and amazing fiancé to have fun with and laugh with every single day. Most days I forget about my hand because I have you by my side reminding me that everything will be ok. 
I’ll get through it just like everything else and hopefully soon will be “normal” again. 

Whatever normal may be...

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