mixed day

I spent quite a bit of today struggling with the dystonia and worrying about the future again, much like these past few weeks. I called the Silicon Valley Independent Living Center to speak with a counselor about SSDI. They referred me to a benefits counselor. I have to call her tomorrow.

In good news, my appointment for the next treatment got bumped up. It seems that the nurse at the Parkinson's institute is really pulling for me. My appointment is next thursday.

Requip

goodbye Artane. Hello Requip

alive and kicking

yes, I am here. Days are still ups and downs. Probably more downs than ups, but I am keeping my spirits up. Insecurity and unpredictability still haunt me every day but I am learning to live my life with less control.

I got a call from a recruiter on Friday. Seems that a few of my resumes are still up and they're looking for someone with my technical skills in a low-profile job. More and more these days am I missing being in the office punching a product out, being part of something, taking pride in my abilities. I don't know what to do, really. How does one exactly come out of disability? How does one approach an interview like that, explaining their condition and yet portraying a can-do candidate? And then there is my old company, the one that has been so patient and understanding. I owe them so much, but in my current state I cannot do the job they hired me for.

I've been passing the time jamming on the laud. The skin on my first 2 fingers has peeled about 4 times in as many weeks. But the music is becoming more effortless, so I can count that as an improvement. The question is, will I ever be able to perform again with this condition?

...Doctor upped my dosage of artane again. And this time, I'm feeling it. I've been feeling kind of off, like I'm about to collapse at any moment. And it'sn ot because I've been tired, because I've been trying to get more sleep.

fears

According to this site, my disability benefit from California should only last 13 months. Considering how long this ordeal has taken me so far, I don't have faith that I'll be well enough by the time October comes a long again. The site also makes reference to seeing an independent living center for counseling on longer term disability as well.

I think I'm going to try and muster up some courage and calling them, maybe by the end of this week. If there's anything that this condition has brought me it has been insecurity. I always said I was smart enough to get through life. Most things never really worried me and most certainly always had an answer. I now have to admit that I'm really scared for how this will all turn out.

nervous energy

Sometimes I feel like it's the beginning again, like I haven't moved a single step in accepting my condition. Lately I've been waking up with a nervous feeling that's been carrying on throughout the day. I'm nervous that this is forever and that time is running out in terms of work and disability support. I'm nervous that I won't be able to do the things that I love anymore.

The worst part of this thing is that it isn't like a common cold where I can feel it getting better over time. When do the doctors give up?

almost impossible again

In the past week, past few days actually, I've noticed my condition worsen exponentially. Perhaps it's the botox wearing off, but my head is uncontrolled in a dystonic posture almost all the time again. Not even the sensory trick of holding my hand to the side of my face is working. I don't know if this is worse than before, but now my right shoulder seems to be countering too.

With the dystonia, so comes the pain.

I've taken to wearing the brace almost all the time now, as much as possible without it getting really uncomfortable. But as the dystonia gets worse and my head fights the brace, the more painful it becomes.

I dread the day that it will be impossible to use a computer again, but until it comes I've taken to editing videos as a pastime.

The doctor has increased the dosage of artane, so far with little noticeable effect. I haven't been as depressed as I have been, but I think it's just a good wave right now. I still miss the days of normality.

unmanageable

Yesterday was a really bad day. I was able to get out of the house to attend rehearsals. The Haranistas were awesome as always, and I was happy to see some of my favorite dances being performed.

I had sporadic episodes as I always do, but towards the end the dystonia was really fighting my brace and it started to hurt. I went home to rest and had a rough evening.

After several difficult bouts this weekend I've decided that as much as I want to go back to work, my condition is still unmanageable for me to go back earlier as I wanted.