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Running Against The Wind

I have never been like everyone else. I am girly, I guess, but I love four wheelers and fast cars.  I enjoying dressing up but I'd rather be in jeans and a tshirt.  I hate high heels.  I love spicy foods.  I don't like to relax, I like to always be on the go. 
When it comes to my medical history, nothing has ever been typical or normal.  Everything I have is something no one has seen before.  When I dislocated my shoulders, the ER doctor had to read a book on how to put it back in because it was dislocated in the back not the front.  When I was little I had headaches all the time and no one could figure out why, it felt like there were marbles in my head.  No shoulder surgery was easy, and everything I ever had done, there was a complication.  When I had my tonsils out I got really sick, lost 15 lbs., my throat started bleeding about a week later and I ended up in the ER.  When it comes to my dystonia, once again its not typical or normal... not that dystonia is normal to begin with.
I have been having a lot of problems over the last month. Within the last couple weeks, my hand and foot curled in.  I immediately called my neurologist to get me in but he was on vacation so he gave me the name of someone else to help me.
On Monday, I drove to Dartmouth to see a new neurologist.  He changed my settings to a "typical" dystonia setting, hoping for some relief.  What I didn't understand was I am not "typical" and these kinds of treatments never work for me.  He said him and every doctor there had never seen settings like mine.  As the day went on, my hand and foot got worse.  By yesterday morning, my neck was so stiff I could barely turn my head.  Each day it has been getting a little worse. 
The next plan is to go back tomorrow to have the settings changed back to where they were when I went there.  I am hoping they will change it a little more so that I can have some kind of relief.  The pain is just unbearable. 

Hailey had a great 7th birthday and is really enjoying first grade.  She had her physical yesterday and is very healthy! She is a very happy little girl.

As far as Cody goes, he will be going in on October 16th with a vascular surgeon and ENT to move his carotid artery and have a pharyngeal flap.  He is very much like me and likes to do things his own way.  Nothing is ever easy with us!  Send us lots of love & prayers to get through these next few weeks! <3 br="">

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