Thursday, June 4, 2009

Dystonia Awareness Week June 1-7

Hi all- it's Dystonia Awareness week. I am busy trying to share my story with others. If you are reading this, thanks for your interest in learning more.

Update on me: I was denied the disability. Of course, the decision was made in late January 2009 and I just found out last week. They never notified me. I had to call them. Good news is that I had a good reason so that I can go ahead with the appeal process. I will be filing that tomorrow. Plus, I have retained a lawyer that was recommended by the SD Dystonia group. FYI, 60-70% of all disability cases are denied the first go around. My doctors are confident I will get it.

The botox is wearing off and I am becoming increasingly in more pain. My left hand middle finger is really throbbing and curling. I am due for botox the first part of July. Typical stuff. I'm back to dropping more stuff again. I've been having more difficulty with walking again and even getting spasms in my back again. Have been considering a cane for support. Going to talk to my dr this month about that.

Depression has crept in more. It's been a very busy time and frustrating. It seems like the busier I get, the more stress it puts on my body and the more I want to just shut down. I have to find a middle ground on this.

More later...

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