The video

http://www.youtube.com/watch?v=lJlUDCDaBUg

Here it is ... now everyone can see what this thing called Dystonia is for me.

I dropped off my SS appeal on Monday, so we'll see how that goes.

Things have been very, very stressful lately. I think my plate has been too full and I can't seem to recover. Good news is that Grammy is taking Miranda for the day on Friday and I am doing everything possible to just make a me day. I really need it.

The more physical things that I do (ie Disneyland), the longer I have to recover. And now, it's affecting my left knee. All the twisting is putting stress on my knee. It's very painful to straighten it right now. And I can hear a grinding under my knee cap.

I should be updating more, but just not in the mood tonight.

San Diego Dystonia Benefit Concert

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...