Dystonia Diary

This is what it's like to have cervical dystonia - the good, the bad, and the ugly. Actually, there's nothing good about it.

Thursday, October 27, 2005


Got my former doctor's final report, and it's pretty much what I expected. It's a permanent, but not a "major" disability, no more cashiering, and future medical treatment is recommended. Both doctors think I've reached the maximum benefit of my treatment, which means that I'll probably never be able to hold my head straight and turned forward again. There's no way I'll be able to drive or ride a bicycle - at least not safely - or be employed full-time at the store where I work since cashiering is mandatory for the full-time positions.

Although things aren't progressing as I'd hoped, they are progressing - they're moving ahead instead of standing still. And I'm still as depressed as I was when things were standing still. I should probably talk to my doctor about it, but I don't want to wait and see if the insurance company will pay for another doctor's consultation, I can't afford another doctor, and I don't want to take more drugs. But I hate being miserable all the time. I'll wait and see how things are at my next appointment, and decide whether or not to talk to him about it.

Tuesday, October 25, 2005

Not too bad

Had a doctor appointment today, for a follow-up. The Botox I got in August is still working. My dystonia is only a little worse - a little more turning, and my left shoulder is starting to hunch up, but the pain relief is still good. Botox usually lasts 3-4 months, and I'm hoping I won't need more next month. It looks like I may not. I'm not getting my hopes up though, because I've crashed-and burned too many times already. I've had more than enough dispair. If I don't get my hopes up too high, I won't be disappointed. My former nurse case manager used to tell me to think positive, and to keep my hopes up. Since dystonia is incurable, what would I be hoping for, except the continuation of my expensive and painful treatment?

After talking to my insurance adjuster, it looks like I'll at least get treatment for a while. She's just waiting for more paperwork so she can "do the math", and figure out what I'm entitled to. She thinks it should work out good for me. We'll see.

Saturday, October 22, 2005

To start things off

I developed cervical dystonia as a repetitive-motion injury at work in November 2003, got diagnosed in August 2004, and started getting the proper treatment in May 2005. It's been a long, painful, streassful, and depressing journey. Since dystonia is an incurable neurological disorder that comes with depression in most cases, I don't expect the journey to get any easier. It's a constant struggle that can't be won completely, but there can be small victories here and there, as long as treatment is available - and affordable.