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.

Wednesday, November 30, 2005


At my doctor's appointment yesterday, I was hoping to get more Botox, but the doctor said he was going to just watch me for a while. The last shots are still working to a degree, but the pain is getting a little worse. That's probably partly due to the extra holiday work.

The deviation has gotten a lot worse, though, and it's causing problems with my work. My head is turned about as far as it can go, and when it stays in that position very long, it hurts like hell. Maybe with enough aspirin and Ben-Gay it'll be tolerable at least until my next appointment.

Both of the managers I've worked with at night are great to work with, as is the store manager. I'm not sure about the 4th manager, who I just barely met.

Wednesday, November 16, 2005

Work and pain

My doctor told me to tell my boss not to schedule me for "more hours than before", because the extra workload is just too much. Well, that's definitely true, but I need the money! I got the word from the doctor after I had already agreed to go to work 2 hours early. In addition to that, we all stayed an hour later than usual. Big mistake on my part! The pain was awful, but not quite as bad as before treatment. The deviation, and my control over it, is a little worse. He wants me to call him next week to let him know how I'm doing, then my appointment is the following week. I hope I'll be getting more Botox, because It's going to be so much worse after Thanksgiving. I can handle a few more extra hours as I am now, but not the heavier workload and extra stress.

It's extremely frustrating to not be able to control my constant head-turning. It's been getting stuck in its "turn and tilt" position at work, and it hurts like hell, making the stress worse, making the depression worse. The holidays are depressing anyway, especially since all my "friends" have dumped me. It would be great to have someone to talk to - in person, not just on-line - but I guess I'm just SOL on that. Oh well.

Tuesday, November 08, 2005


I haven't enjoyed the holidays too much since I started working in retail, but now I can't stand them. I hate the holiday season, and I can't wait for it to be over. Not only is my depression geting worse, my pain has gotten worse since the workload has increased, and now we're occasionally being understaffed, which makes the work even harder, and more stressful. At home, the pain is constant but not too bad, but at work my neck turns about as far as it can go, and the pain is about midway between good and bad - with aspirin and Ben-Gay! I don't want to think about how bad it would be without either. It wouldn't be as bad as it was before I got treatment (nearly intollerable), but I'm not going to stop using aspirin and Ben-Gay until after I get more Botox.

I hate being depressed - especially during the holidays - but I'm not insured, and if there's any free or cheap treatment available, how good could it be? You get what you pay for.

Sunday, November 06, 2005


Since I developed dystonia, I haven't been able to crochet because I couldn't hold my head straight and turned forward. Yesterday I managed to crochet a small scarf for winter! I was so happy that I could do it, and that it turned out so nice, that I cried with happiness! I'm going to start work on a sweater that I started planning before my dystonia. After nearly two years, I can actually crochet again! Hopefully with continued Botox treatment I'll be able to keep crocheting.

I'm not sure if I'll get more Botox this month, or if I'll be able to wait until next month. I've been getting tension headaches recently, my neck has been turning harder, and the pain has been getting a little worse. In spite of that, I'm still doing a lot better than I was at the beginning of the year. And I'm still working.

Tuesday, November 01, 2005

So far, so good

I'm surprised that I'm actually doing pretty good. When I'm sitting and watching TV, or riding in the car, I feel almost normal! I don't absolutely have to hold my head straight. When I walk I still have to keep my hand on the side of my neck, but not it's mostly a trick - I don't have to use much pressure. At least not very often. And most satisfying of all, I don't have to hold my head straight when walking down stairs! I wonder how long that will last.

It's been 2 months since I had Botox, and it's still working satisfactorily. The deviation is getting worse, and I'm having pain more often, but the level of pain is no worse. That's good news. So far, so good.