Disability Approved

Well, good news, my SS Disability was approved on Thursday, Oct 8, 2009 after 1 1/2 years of trying. For me, it went through during the reconsideration appeal. :) Still haven't received a letter about it, just the phone call and a large deposit in my account. :)

Such an incredible relief.

The latest

Sorry for the lack of updates. I have been going through some big changes. I had to start using a cane to walk. Also I recently got a disability placard for my car. Both of these items have been really hard to stomach. I'm realizing that I need to utilize these aids in order to stay healthy. I've been tiring easy and falling a lot. So far just bruising and cuts, but it could be worse and i can't do that to my 2 yeaar old. :(

So, I've had those adjustments and now realizing there is more going on. Lately, my mind has been off. I will start to talk about something and then up and forget it mid stream. Talk about frustrating. And now starting to realize that the dystonia might be moving to my right foot as well. That will make all 4 limbs. Eh!! I am going to see a movement disorder specialist next month and hope that he can shed new light on what is going on. I'm becoming more and more scared with everything going on.

Disability update - I filed the reconsideration appeal in June and just found out that it just made it to the state for the reconsideration. On Friday, the office called me for information and told me that they were just getting ready to get the updated reports from my doctors. So, 3 months after I filled the claim. I'm so frustrated by the system. If I was someone who desperately needed the money, I'd be up a creek without a paddle. It's now been 2 1/2 years since I stopped working. Anyway they are telling me December now. Frustrated.

I'm going to try to do a better job of updating now.

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...

Injuries

OMG, I have been so accident prone lately. The latest in my ongoing drama. Kitchen knife stab wound to the palm of my hand. Yep, good one. I was pitting an avocado when the avocado slipped out just as I went to stab it. Instead, I stabbed my palm. Not that big of deal, but I couldn't move my middle finger. So, I cleaned it and iced it. Went to bed. Next morning, lots of pain. So, after talking to my doctor's office, I was told to go to the hospital's Urgent Care. Joy. They wanted me to go for fear of tendon damage. As I understand, there is a small window of time to treat hand injuries like that. Got lucky, the doctor said I just had a small hemotomia and swelling. The finger was able to move, just painful. So, I got more Vicodin and on my way. He said it would be fine when the swelling went down. :) It already feels much better.

I am so tired of being hurt or in pain all the time. EH! I just want to feel good again. Oh and of course the middle finger is my dystonic finger.

Crosses finger that this next week will be better.

Good news today ... I won a free 30 minute stress release accupunture session. :) I've been wanting to check that out for relief of pain and stress. Now, here is my opportunity. YAY!

Speech

Today, I realized how much my voice has changed. When my daughter was born, I really didn't have much trouble saying her name. Today, I was introducing her to someone and had to say it 3 times to just get her to understand. I almost starting crying when I looked back and noticed that it has been a problem for awhile. I get so frustrated. I have even noticed that my wife doesn't hear half of what I say anymore. I think it comes out so mumbled at times, she doesn't know that I am talking to her. This really hurts dealing with speech. The physical pain is nothing compared to emotional pain I deal with. Sometimes, I just want to curl up in a hole and never talk again. But I have to work on this for my daughter.