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.

Thanks for the support

I just wanted to pop on here to thank everyone for their support. Without support, this condition would be even more difficult to deal with. The hardest lesson in all of this for me has been to learn to ask for help. I was reminded of this again today. My daughter and I have been at the neighborhood pool the past 2 days with the neighbors. It's been awesome. However, I got a little burnt on my shoulders and back because I didn't ask for help again. I can't even put sunscreen on my own shoulders let alone the back. I should have asked my neighbor to do it, but no. I was afraid even though I know she would have. Eh

Frustration

On top of everything else, I broke a toe on my right foot the other day. I'm just grateful it's not my dystonic foot. That would be miserable. Things have been better in some ways and worse in others lately. I was actually able to write a message in my grandfathers birthday card for the first time in a long time. That is huge for me. On the other hand, I've been taking more of my Clonezpam and even Vicodin lately for my foot. It has been curling very tight and is painful. I really need to get out more too. Excercise hurts but in the long run is very good for me. Walking just for walking sake is very hard, but when my daughter and I go to the animal park or Disneyland, I do better. I think it's the distraction. Guess it's good that I am planning a trip to Disneyland later this week. :)