Dystonia Diary

Fairly good this time.

2011-06-10T23:16:00.000-07:00

It's been about a month since my last Botox shots, and things are going fairly well. Not as good as I'd hoped, but there's been noticeable improvement.

Although I still can't turn my head to the left when I walk, I can hold it mostly straight. It still pulls back, but not quite as much as before. I'm pain-free, too, except for very minor aches from time to time. That's fairly typical after Botox.

I'm not getting as much "muscle relaxing" from the Botox, but as long as it still works at least a little, and I keep getting it mostly - or entirely - on the left side (where I need it most), it should be good.

Botox time

2011-05-03T21:31:00.000-07:00

Got more than a dozen Botox shots this morning. I'm not sure how many more because I wasn't paying that much attention. All the shots were on the left side of my neck this time, so this treatment should turn out better.

Th only problem was with the transportation company that the insurance company uses. They supposedly have a good reputation, but since the driver I had twice talked on his cell phone while he was driving both times, even though I filed a complaint the first time, I don't trust them anymore. Guess I'll be taking the bus to my Botox appointments from now on - or until we get another car.

More Botox

2010-09-01T21:02:00.000-07:00

Got about 14 shots of Botox a couple of days ago - mostly on the left side of my neck (the correct side).I'll know if it worked in 2 weeks. The deviation should be noticeably improved by then. Hopefully.

My netbook battery is almost dead. Gotta go.

So far, so good - and bad

2010-07-12T17:45:00.000-07:00

Although the dystonia is just as bad, I'm at least getting some pain relief. The only way to get just a little dystonia relief is to do lots of stretching exercises at least 4 times a day, posture exercises twice a day, and stretch as often as possible throughout the day. Who has that kind of time? If I can't get significant relief from the constant pulling of my neck and shoulder muscles, I'll have to make the time for more and more exercising, along with all the other things I have to do - like my job, housework, yardwork, having a life.

And now for something completely different...

Because of some of the "questionable" websites some comments are connected to, I'm going to have to reject all comments from posters whose comments (in any language) are linked to any kind of "dating" sites. I'd like people of all ages to read this blog without the risk of having kids going to a site that may not be appropriate for them. I hope everyone will understand why this is necessary.

Also, since I have to go to Starbucks to get online, my updates won't be as often as I'd like them to be.

What a mess

2010-06-10T17:14:00.000-07:00

So I'm sitting at Starbucks, drinking their coffee, using their free (with purchase) WiFi, and wondering why my Dr still can't get my Botox right after 5 years! My neck is a mess - so much weakness in the back of my neck that I have trouble holding my head up (especially when I'm working), too much weakness on the right side of my neck (my head droops to the left in addition to being pulled back and to the left), and not enough weakness on the left side of my neck to stop the constant pulling. I'm actually worse now, and it's interfering with my ability to do my job. My next follow-up should be interesting.

I wish I had internet service at home. Going to Starbucks every time I want to get online isn't cheap, and I only work part-time.

BTW, I still haven't been able to watch the video that was posted in a past comment. :( Don't know if it's a problem with my netbook or the WiFi. O_o

A little off-topic

2010-06-04T20:05:00.000-07:00

I've been getting several comments that appear as symbols. Unfortunately, I can't read them or translate them, so I have no idea what they say. Does anyone know what they say, or is there a way to have them translated? Thanks in advance. :)

Since Botox takes about 2 weeks to take full effect, I'll post about my shots then.

It just keeps getting worse

2010-05-15T16:51:00.000-07:00

My Dr asked for approval for more Botox, so we're just waiting or the "OK". I can't believe how bad my dystonia is now. It gets a little worse after each treatment. My neck is really twisted up now. At least I shouldn't have to wait too long for my next treatment. I'm going to ask my Dr to do inject most of it on the left side (my head turns to the right, among other things), because (apparently) that's the way it should be done.

The pain can be bad at times, but it doesn't last long. Since I usually work just 4 hours a day, it's just mildly annoying. All I need to do is stretch my neck for a few seconds, and I'm good to go - for a while. :)

I really should do more stretching and posture exercises, but there are times when I just get sick and tired of exercising several times a day. At least I do some exercises twice a day every day. I need to do more, though. I also need to do more research into what other people with cervical dystonia are doing. There's bound to be someone who found something useful. Since the only way I can get online now is by going to Starbucks for their free WiFi (2 hours with a food or drink purchase), I can't get online as often as I need to. Oh well. I'll post after my next treatment, if not sooner.

Most recent follow-up

2010-03-20T15:13:00.000-07:00

My March follow-up went as I expected. I told my Dr that I got the opposite results again - trouble turning my head in the opposite direction of the dystonia, but it's not as bad as last time. He said "left, right, left, right...", meaning that he wasn't sure what was going on. I didn't get to the library to do the "sternocleidomastoid research" I wanted to do, so I couldn't clarify it for him. Since he seems confused, I should be able to convince him to do most of the Botox on the left side next time without the medical book info, but I'll try to get it for next time anyway.

Although I've had some pain relief on the side that didn't need it, my neck is a mess. It turns to the right, leans to the left (& my left shoulder hunches up little), pulls forward, & tilts up. About 1/2 of the pain I'm having is on the left side of my neck and left shoulder, and the other 1/2 is in my back, caused by my bad posture & the moderate muscle weakness in the back of my neck from the Botox I got there in October. Yeah, October. Sheesh. Oh well. All I can do is hope those muscles will eventually recover.

My "sensory trick" (putting my right hand alongside the right side of my neck) doesn't work very well now, so I usually just "let it all hang out" and walk "as is" (without my hand on my neck). I don't care if people stare anymore. I just ignore it. If more people knew what it was, or if we had a popular celebrity talking about it, it would be helpful.

I've been sleeping badly because of the dystonia, but I don't want to take larger doses of Baclofen or Zanaflex. Herbal tea with Valerian seems to help make me a little more drowsy at bedtime, but I can't sleep more than 3 hours straight through. I may try Valerian capsules, but I'll have to find the lowest dose, then talk to my Dr and my pharmacist to see what they think - then do it anyway. ;) Eventually I want to take lower doses of my scrips (& maybe dump the Zanaflex) and find a more natural way to get more sleep. What I'll need to do is try a Valerian capsule in the daytime (on a day off) to see what happens. If it works, I'll cut back on the bedtime meds & take the Valerian between the "Bac" and the "Zan". If it works, I'll be like :D but if it doesn't, I'll be like :( then like >:( because I'll have to talk to my Dr about it. He'll probably say "more meds", and I'll say "NO more meds! I want an alternative to more meds! Sheesh!"

Anyway, I'm starting to ramble. I'm tired. Hopefully I'll have something more coherent to say next time. :)

BTW, I haven't been updating this as often as I want to because we're offline at home - except for my husband's Sprint Air Card, which has limited internet access. When I want to go online, I go to Starbucks, buy a coffee, and use their 2-hour free WiFi, which I'm doing now. It ain't much, but it's free - except for the coffee. *lol*

Botox update

2010-02-03T14:57:00.000-08:00

Got about 14 shots of Botox yesterday morning. I told my Dr that 80% of the pain was on the left side of my neck, and that the muscles on the left side of my neck were tight, hard, and bulging from my head turning so hard (to the right). He injected most of the right side of my neck (the wrong side) again. If I get the same results that I got last time (my dystonia was barely affected & I couldn't turn my head to the left), I'm going to be angry.

The Botox was done about 40% on the left side (the correct side), and 60% on the right side (the wrong side). Hopefully it won't turn out too bad this time. At least I get good pain relief until it wears off.

At my next follow-up, I'm going to ask my Dr about getting a consultation with a physical therapist who knows about dystonia, and knows how to treat it. Maybe I can get some exercises that will be more helpful than the "muscle strain" exercises I got back in 2003.

By the way, I recently got a recommendation to check out a site called Disorder.org. It's a good resource for useful (and easy to understand) information about a wide variety of disorders. There's a link to it at the top of my list of links.

And by the way, my spell-check keeps telling me that dystonia is misspelled. I guess spell-check hasn't heard of dystonia.

Botox day tomorrow

2010-02-01T18:04:00.000-08:00

I'm getting more Botox tomorrow, and I hope my Dr does it right this time. Last time, he shot most of it into my right sternocleidomastoid muscle, and I couldn't turn my head to the left. My dystonia is pretty bad now because of that (my head turns hard to the right, leans to the left, and pulls forward, and my chin tilts up), so I'm going to ask him about putting most of the Botox in the left muscle this time. If he doesn't agree to do it that way, I'm going to ask my insurance adjuster if I can get either a second opinion or someone to do some research on the sternocleidomastoid muscles.

My Dr won't listen to the research I did because it was all online. He says you can't believe everything you see online because the internet is full of misinformation (duh!), and that there are lots of people who want to take advantage of people like me. "People like me"? Sheesh! Give me a break. I'm not stupid, and I know how to think and do research. Guess I'll have to check the medical books at the library. He can't argue with them!

I haven't posted much because we lost our cable tv/internet service, and have to rely on a Sprint Air Card (can't use it too often), and Starbucks free WiFi (requires a coffee purchase). I'll, post as often as I can use the air card or can afford the coffee.

More Botox

2009-07-12T23:26:00.000-07:00

Last Wednesday I got a dozen or so Botox shots. I was trying to count them, but I got distracted because everyone was talking. I like to try to count how many shots I get to see if I get more or less as time goes on.

My Dr was more careful about where he did the shots. He took his time & manipulated my neck a lot to see which muscles were tight. It seemed like he got most of the shots in the right place this time. I'm already barely noticing the effects. Hopefully he did a good job this time, & I won't have any muscle weakness in the back of my neck this time.

Whenever I get that exsessive muscle weakness, it prevents me from holding my head up properly, & it gives me bad posture. The bad posture then keeps me from walking properly & causes lower back pain when I walk very far. I had so much trouble walking recently that I had to take the bus home from work, and I only live half a mile from work. That lasted almost 2 months. I'm back to walking normally now, and hopefully I'll stay that way after the Botox takes effect.

Repetitive motion

2009-07-06T00:13:00.000-07:00

There's several different ways to get dystonia. One of them is how I got it - repetitive motion. Apparently golfers, writers, and musicians can get it from repetitive motion. Here's some links to that info...

http://mayoclinic.com/health/dystonia/DS00684/DSECTION=symptoms

http://www.articlearchives.com/medicine-health/diseases-disorders/38657-1.html

http://en.wikipedia.org/wiki/Repetitive_motion_injury

http://encyclopedia.farlex.com/repetitive+strain+injury

I'm baaaaack!

2009-06-25T19:23:00.000-07:00

I almost forgot about this blog. I've been busy with lots of things online & offline. Anyway...

Normally my Dr is pretty good with injecting the right muscles, but not this year. Although the pain relief has been pretty good, I've had no dystonia relief,and it's getting worse. My head is turning further to the right, pulling further back, and pulling more towards my left shoulder. My left shoulder is pulling up more, too.

My Dr said I was a "moving target" because it seems like there's different muscles involved at different times. What he's been doing is injecting Botox into whatever muscles seem tight. Since he's not a neurologist, and doesn't have the equipment to determine exactly which muscles are affected, he can only treat the ones that are tight. It hasn't been working this year, and he's going to try a different strategy next time.

The insurance company won't let me see a neurologist because they say that Botox is an experimental treatment for dystonia (even though it's standard procedure). I can't shop around for doctors because it's handled by Workers Comp & the only other Dr they found for me is a lot farther away than the one I'm seeing now. It's frustrating, but at least my current Dr knows what dystonia is, and has experience with treating it.

It would be nice if I could get more than 3 hours of sleep at once. I asked my Dr a couple of times about trying Valerian or Melatonin, but he doesn't want me to experiment yet, since I'm taking 40 mg of Baclofen & 20 mg of Zanaflex at night to help me sleep (& it's not helping enough). I may try Celestial Seasonings Sleepytime Extra (with Valerian), but cautiously. One sip between nighttime meds every night for a week to see if it plays well with them. If it does, then 2 sips at night for a week etc. until I get more sleep & can cut back on the bedtime meds. I don't think my Dr will be happy about it, but I'm sick and tired of not getting enough sleep, and being so heavily medicated at bedtime.

More shots, and even MORE shots

2008-05-24T13:52:00.000-07:00

Well, it's been an interesting few months. The insurance company sent me some paperwork about 2 years ago concerning the benefits I'd keep getting. I signed it and mailed it back a few days after I got it. In February, I got a letter telling me that I (and a lawyer from the insurance company) had to go to a hearing about my benefits. My adjuster told me it was because my benefits paperwork was never filed!

I had to see my former Dr to get re-evaluated, and had to get another x-ray and MRI. That was in early April. I still haven't heard from that Dr abut the results of the MRI, but after the x-ray he said that I now have osteoporosis in my neck, as well as degenerative disk disease. Great. Looks like I'll have to my neck exercises more often.

Whenever my former Dr gets his paperwork finished and sent in, my insurance company lawyer and I will have to go to another hearing to get things finalized, and then I can get on with things without any more hassles. Hopefully without any more hassles. The funny thing is that the insurance company lawyer and adjuster (and the judge) want me to get the treatment I need! That's gratifying, because I won't have to hire my own lawyer to fight the company.

In February I got 12 Botox shots - fewer than usual. It started wearing off in April, so he got approval for more, and I got 18 shots last Tuesday. I still have a small sore spot in the back of my neck from one of the shots, but I expect it to clear up eventually.

Now I just have to wait and see if I got enough Botox or too much, were the shots given in the right muscles, will I have problems with muscle weakness, and will I have trouble swallowing.

I almost forgot to mention that my insomnia has been pretty bad, so my (current) Dr increased my Zanaflex by 2mg. I'm now taking 40mg of Baclofen 2 hours before bedtime and 20mg of Zanaflex at bedtime, and have been for about 3 months. In spite of that, my insomnia got so bad I could hardly stand it. I'm assuming it's because the Botox wore off early, and I'm now assuming it'll slowly start to improve as the recent Botox takes effect. More "wait and see".

Strange new problem mostly gone!

2007-12-28T17:22:00.001-08:00

My problem with putting my left arm in the sleeve of my jacket has almost completely cleared up! It may have been just a combination of worsening Dystonia and insomnia, plus job stress.

Speaking of insomnia, I've been drinking Chamomile tea at night, right before bedtime. If I drink it quickly while it's still hot, I sleep a lot better but I wake up groggy, and with a mild headache. I tried taking one less Zanaflex at bedtime to see what happened, but I slept a lot worse. Now I'll try taking one less Baclofen at night to see what happens. I may get lucky.

The deviation has gotten a lot worse. My head is turned right, pulled forward, and tilted up, and my left shoulder is hunched up if I completely relax and let everything just happen - or if I'm working. It's making work a little more difficult, but I can still manage. The pain is a little worse, but still tolerable. So far. By my next follow-up (mid-January), my Dr will probably ask for more Botox - and I'll probably be ready for it.

Strange new problem

2007-12-24T00:52:00.000-08:00

*I posted this on Dec 21 elsewhere*

I've always put on coats with my right arm first. About a month ago, I noticed an occasional problem with finding my left sleeve to put my arm in it. I never gave it much thought. For all I know, it could have been happening for a couple of months, but since it happened so rarely, I hardly noticed it.

A few days ago, I really noticed that I have that problem most of the time. I now have a lot of trouble getting my left arm into a coat sleeve more often than before. Since my Cervical Dystonia causes my head to rurn right, pull forward, and tilt up - and cause my left shoulder to hunch up - I'm wondering if my "sleeve problem" is Dystonia related. I'll ask my Dr at my next follow-up in mid January.

That's all I need - another Dystonia compication! At first, my head just turned to the right. Now it turns, pulls and tilts, and my shoulder hunches. Sheesh! The fun never ends.

As I like to say, Cervical Dystonia may be a pain in the neck, but at least it isn't boring.

More Botox again

2007-10-20T16:05:00.000-07:00

I got more Botox (12 shots) October 2, and although my deviation is almost as bad as before, the pain relief has been pretty good. The only problem area is my left shoulder, mostly near the base of my neck.

These shots had better last until January, because it'll be a difficult holiday shopping season if they don't. The store I work at will be a serious mess, I'll be working long hours, and I won't be able to request a day off for more shots until January.

I was surprised that the most recent shots were authorized, since they were so soon after the others. There's no way they'll authorize even more Botox if I need it before January. But you never know.

My insomnia is a little worse, but no one at my Dr office has asked about it the last few times I was there. I'll definitely mention it next time, because I'm tired of spending 10 hours in bed, and only getting about 6 hour of interrupted sleep - if I'm lucky.

Late update

2007-08-06T17:52:00.000-07:00

I had my Botox shots last Tuesday - just 13 shots this time, instead of the 16 or 17 that I was expecting. It's only been a week, and I've had some pain relief, but there's been very little difference with the deviation. The full benefit won't be until next week, so there should be more improvement. If not, I can still get more if my Dr thinks I need it. The authorization is good until Sept 25.

My insomnia is still just as bad as ever - I seem to spend about as much time awake as asleep, waking up 3 times each night, and staying awake anywhere from about 30 minutes the first time to nearly 2 hours in the early morning. Hopefully I'll get more sleep as the Botox takes effect.

Request for Botox

2007-07-23T14:10:00.000-07:00

At my last Dr Appointment last Tuesday, he said he'd request approval for more Botox. Needless to say, I was very pleased to hear that, because both my sternocleidomastoid muscles ache all the time. BTW, I had to look up the spelling of that muscle, and I still can't pronounce it. *lol*

I hope my insurance adjuster doesn't treat the request for Botox the same way he treats my mileage claim forms. They don't get delivered to him right away, and when he gets them, he overlooks them. He was late in approving the last request for Botox, but he better not delay approving this one, because the deviation is starting to make my job a little more difficult, and my insomnia is getting worse.

Forgot my passord to this!

2007-07-09T23:01:00.000-07:00

I almost lost this blog because I couldn't remember my password. I now have a different way to do it, so I hope it works! Anyway...

I recently got back online, so I can start getting caught up. I have a Dr appointment next Tuesday for a follow-up. The last time I had Botox was February. Pain is only a problem at work, because of how bad the deviation is. Each time the Botox wears off, the deviation gets worse. I may have posted that before. My insomnia has gotten worse, too. It's starting to affect my concentration, and it's affecting my work a little. Nothing serious - luckily! Hopefully My Dr will ask for authorization for Botox, and it'll come through soon!

From the library...

2007-02-08T15:33:00.000-08:00

I've been offline for a long time thanks to our stupid (former) cable tv/internet provider.

I got 17 Botox shots Tuesday morning, and spent the day feeling like I was beaten with a mallet. Oh well, it was worth it. Now I get to play Goldilocks - did he use too little (it'll wear off too soon & I'll have to wait 4 months), did he use too much (my head will droop & make it difficult for me to work), or did he use just the right amount (I'll be virtually pain-free, fully functional, and almost normal looking for almost 4 months). I hate the wait. I may or may not have trouble swallowing. Hopefully not! I also hope we'll be back online soon, because anyone can click on "history" to see what the previous users were up to. Not good! If I can sit here until "computer use time" is over, I'll have it made.

More insomnia

2006-11-28T15:15:00.000-08:00

My insomnia came back Saturday. The extra Baclofen I started taking the day before Thanksgiving just helped a little. The only thing it does is help with flexibility and excessive stiffness. It's certainly better than nothing, but I need to be able to stay asleep at night. Because of all the stress I'm under now (and probably will be for some time), I don't think it'll ever happen.

Appointment update, and possible work issues

2006-11-23T18:13:00.000-08:00

My Dr appointment yesterday went well, as they tend to do when they're just updates. I told him how helpful the extra Baclofen was, and he told me to keep taking it that way, and gave me a new prescription. I'm so glad the Baclofen is helping, and that it doesn't make me too drowsy to work - unless I take my "3 tablets 2 hours before bedtime" while still at work. Sometimes I have to, because I work nights, I'll be staying later and later during the holidays, and I don't want to stay up until 2am or 3am - especially if I get a "day job"! I'm still waiting to hear from 4 places, but only 2 seem promising.

Pain-wise I hope I still do about as good as I have been, since late December will mark the end of the 4th month since I had my shots. They just barely lasted 4 months last time, and I'll be working a lot harder now, so I'm a little concerned.

I'm also concerned about the worsening deviation, since the Baclofen does nothing for it (although it helps with flexibility). I hate being stared at - especially at work - and it'll just get worse since there'll be more customers there to stare at me. What I do when I catch them is stare back, then politely say "Can I help you?" That usually works. When it doesn't (that rarely happens), I just keep staring for a few seconds as I walk away to continue my work. They don't seem to like it, but what can they say besides "She looked at me when she asked if she could help me!"? Guess their parents didn't teach them that it's not nice to stare.

My next appointment is near Xmas, and by then I'll probably be ready for more shots if the pain is bad enough. If it's just a worsening deviation problem, I won't get them until the pain gets bad enough. If I'm lucky, the worsening deviation won't affect my getting extra hours. It hasn't affected my work, and I don't expect it to. We'll see.

Temporarily much worse

2006-11-21T20:11:00.000-08:00

I was feeling pretty good for a while, then on Nov 10, I woke up to excruciating neck pain. Maybe I just slept funny. I tried to do my neck exercises more carefully, but it just made the pain worse. It has been slowly getting better, but my flexibility is reduced and the deviation is getting much worse.

Nov 12 I agreed to work extra hours, so for the first - and only - time, I took an extra Baclofen during the day. One in the morning, one in the afternoon, and one in the early evening. Not only did I feel pretty good that night, I slept much better than usual. What a delightful surprise!

I have a Dr appointment tomorrow morning, and I'm going to ask him if I can take an extra daytime Baclofen at least through December, since I'll be putting in some long, hard hours because of the holidays. I hope he agrees, because with it, I may be able to go a little longer between Botox shots. That'll make the insurance company happy! *lol*

More drugs

2006-09-22T23:21:00.000-07:00

At my last Dr appointment on the 20th (a follow-up), he increased my Baclofen to 30mg a night (up from 20mg), because I was having trouble falling asleep, in addition to staying asleep. That night I thought I forgot to take the 18mg of Zanaflex. The next night I just took 6mg. I woke up about 4 1/2 hours later (a big improvement), and since I didn't have any vivid dreams, I took the other 12mg. Much to my surprise, I didn't experience the "drugged-out groggy" feeling that I had the last time I took 30mg of Baclofen, or the "lazy, apathetic" feeling from the Zanflex! Tonight, I'll take 12mg, then the next 6mg when I wake up.

My reason for doing that tonight (instead of taking all 18mg at once) is because 18mg of Zanaflex makes me really tired. I have to work tomorrow evening, and I don't want to risk being too tired or "druggy" at work. I also work Sunday evening, so I'll do the same, and take everything as prescribed Sunday night.

Pain-wise, I'm doing really good. I still can't turn my head to the left when I'm moving around, but I can hold it a lot straighter now, and the pain is greatly reduced. I just have minor pain and a little stiffness on the left side of my neck, and around my neck at the top of my shoulders. I can live with that.

More Botox

2006-08-23T23:11:00.000-07:00

Got more Botox Tuesday (8/22). The shots didn't hurt quite as much as before, which is good because I had 15 shots. I wasn't as sore as last time, either. Just the usual neck and shoulder pain. Now I just wait to see how well it'll work, and if I'll have any problems with dry-mouth and swallowing. Hopefully these shots will last at least 4 months like the last ones.

Info from my other blog from 2005

2006-08-21T21:56:00.000-07:00

Continued from my previous post...

1/9/05
More Workers Comp Leave, and still waiting for approval for a neurological second opinion and more physical therapy. I'm still in so much pain I can hardly stand it.

1/16/05
Finally got approval for neuro 2nd opinion, and maybe more physical therapy in Spring!

1/19/05
Been having "tingly feet", so I called Dr to report it. Nothing can be done since it's not related to my Torticollis, but I though the neuro may want to know.
The Tennessee branch of ins co will talk to me, while the local branch won't. And more Workers Comp leave.

Feb 05
Neuro appointment. A waste of time.

3/18/05
Neuro test appointment. Another waste of time.

5/5/05
Confirmed appointment with Pain Management specialist Dr, who knows how to treat dystonia! Workers Comp leave continues.

5/6/05
Saw above Dr.

5/17/05
First Botox shots

5/25/05
More phys therapy.

5/31/05
More Botox.

6/14/05
More Botox.

6/15/05
Last phys therapy. Didn't help much.

6/28/05
More Botox.

7/4/05
Finally back to work!

7/19/05
Last Botox shots. 35 total.

9/28/05
My condition was declared "permanent and stationary" by Ortho Dr, and I was released to Pain Manacement Dr for further treatment. He also gave me a "permanent restriction - no cashiering". If I operate a cash register, the repetitive motion involved in looking at the register, then the merchandise, then the bagging area, all makes my dystonia worse. It also prevents me from getting a good paying job in retail. Oh well.

Info from my other blog from 2004

2006-08-21T20:14:00.000-07:00

I'm thinking of deleting my original blog since I rarely post to it anymore. Since I have some info there that I don't want to lose, I'm transfering some info from there to here.

Sometime in Feb. 2004, I started the process for additional treatment through Workers Comp. The whole time, my neck pain, stiffness, and spasms are getting worse.

3/10/04
Change in managers. The one who was there when I developed dystonia is gone (the assistant mgr at that time is still there), and a "returning" manager is back ("K").

3/13/04
Temporary ass't mgr today.

Asked "K" to demote me to cashier sometime between this post date and the next post date.

4/16/04
New mgr ("V"). Same ass't mgr. Still waiting for Workers Comp med evaluation. Regular ass't mgr came back sometime before this.

4/20/04
Got med evaluation app't set up fo 1 1/2 months from this date.

4/23/04
Problems between a former co-worker and 2 current is causing me major stress! It's not helping my neck.

5/2/04
Shorter work week!

5/7/04
A 3-day workweek.

5/18/04
I'm officially a part-timer.

6/7/04
Got my med evaluation. I'm entitled to an MRI and further treatment.

(off-topic)
Applied for citizenship with Nova Roma 6/7/04. Accepted by Gens Martiana 6/8/04. Citizenship app accepted 6/11/04.

6/29/04
Medical report for work is ready (after persuing case for 5 months). Should have it by the end of the week. Just need to call the insurance company to set things up.

7/2/04
Got med report in mail. Have to wait for the State and the insurance company to get their copies.

I think this is about when we got another new manager ("P").

7/28/04
Called insurance co, left message asking why I haven't heard from them yet. Told them I hoped I wouldn't need a lawyer.

8/16/04
Spoke to someone at insurance co. Asked about paperwork and why my calls weren't returned. Paperwork was sent to "the next stage" in the process, and they'd "look into" why my calls weren't returned. Yeah.

8/18/04
Considering suing after emailing law office. At insurance co, no one answers phone, no way to leave message.

9/22/04
Finally seeing Dr, and he knew what I had - Spasmodic Torticollis - O_o - but treatment was outside his specialty. I picked "Orthopedic Surgeon" earlier from the insurance company short list of specialties, not knowing what I had.
Went home and Googled it, and wasn't pleased with the prognosis, but at least I finally knew what it was. And I'm in so much pain I can hardly stand it.

10/2/04
Got note from Dr for 1 week off to see if it helps. Using vacation pay.

10/3/04
Week off from work.

10/10/04
Back to work, and I feel a lot worse. I can't work anymore. The pain is excruciating. The meds I got earlier aren't helping.

10/11/04
Got appointment for MRI and physical therapy.

10/13/04
Got note from Dr. Workers Comp Leave starts today.

10/14/04
Insurance co gets disability payments for me. Shock!

10/16/04
Went for MRI. They said they'd do it even though I have surgical staples from appendectomy in '83. After I got ready for it, they said they wouldn't do it because of the surgical staples. @SSholes!

10/18/04
Filed complaint against "MRI company" for refusing to do MRI after telling me they would, and for lying to my Dr and the ins co about what happened there.

10/21/04
Dr appointment cancelled until I can get MRI - somewhere.

10/29 04
Finally had MRI at an "alternate facility" since the main facility's machine was broken. They said their alternate facility would do an open MRI. When I got there they said they had no open MRI equipment. Their report said "the deviation to the left was congenital". @$$holes! The deviation is to the RIGHT, and it's NOT congenital. Filed another complaint.

11/12/04
Physical therapy finally scheduled.

11/17/04
First of 14 phys therapy treatments starts. OUCH!

12/7/04
Dr wants to get 2nd opinion from a neurologist.

12/21/04
Phys therapy over. A waste of time, I feel worse. Ins co disputing my benefits and won't return my phonecalls. I threaten legal action. Store's Human Resources won't return calls either.

More Botox tomorrow!

2006-08-21T19:18:00.000-07:00

I'm both dreading and looking forward to my Dr appointment for more Botox tomorrow. Although the neck pain has gotten worse, I still have more control over the spasms than I normally would at this time. I'm looking forward to the shots because of the pain, spasm, and muscle contraction relief. I'm dreading it because of how painful the shots are. I had 16 last time, and I hope I won't need as many this time.

How painful are they? Try pinching your neck with your fingernails - hard - for about 5 seconds, about a dozen times, and you'll have an idea what it's like. Not fun, but very effective for 3 - 4 months. Then it's back to the Dr office for more! Maybe I'll get lucky and they'll last for 4 months again.

Still pretty good...

2006-07-14T21:13:00.000-07:00

It's only been in the last week or so that I've gotten noticably worse. The pain is only a little worse, but it's all over my left shoulder, and in the back and sides of my neck. I'm still pretty flexable and have good range of motion, but my head is not only turned to the right, but being pulled down towards my left shoulder, and my left shoulder is being pulled up. It's a really awkward position, but I'm still functional enough to keep working.

Since I stopped drinking my favorite Starbucks drink - the one that had caffeine but they told me it didn't - the Zanaflex is working better. The Tizanidine is still pretty ineffective though, but since I don't have much more of it, it's not a problem.

My depression has been getting a little better. I'm not sure if it's because I'm sleeping better, or because I'm adapting better to having dystonia. Whatever the reason, it's nice to not be quite so miserable all the time. I'm still bothered by the fact that I look freakish, though. Hopefully it won't take much longer to adapt to that.

It's also nice to be able to treat the pain with just a couple of aspirin and a microwaveable herbal hot pack!

So far, so good - mostly

2006-07-09T16:55:00.000-07:00

I'm still doing pretty good as far as pain goes. It's only a problem when I work, and then it's not a major problem. I probably won't need more Botox until August, or *maybe* September.

My insomnia is finally getting better. I found out that my favorite Starbucks drink - the Grande Blackberry Green Tea Frappuccino - has about as much caffeine as a small cup of regular coffee! I'm kinda pissed off about that, because they told me it had no caffeine. I got the information from other websites that talk about Starbucks drinks. Now I drink their fruit drinks and blended creams.

I'm also taking 18mg of Zanaflex at bedtime, and it's starting to work. It now takes me about 1/2 hour or so to fall asleep, then I wake up 90 min to 2 hours later. Then I fall asleep after maybe 30 - 60 min, and wake up again after about 90 min (that's actually an improvement!). Then I'm awake for 2 - 3 hours and fall asleep briefly before getting up a little tired. I'd love to eliminate that 2 - 3 hour break!

The deviation is getting pretty bad when I walk, but I can sit, and stand still, without holding my head very much, and I don't need to use any pressure - I just put my hand at the side of my neck, and barely touch it with my fingertips. I'm very pleased with that. My flexibility is still really good due to the Baclofen. I have an appointment on the 19th, so I'll find out then if I'll be taking Zanaflex or Tizanidine at bedtime.

Insomnia

2006-06-14T20:28:00.000-07:00

I've had insomnia for a while, but these last 2 weeks, it's gotten a lot worse. I spend 11 hours in bed, but sleep only about half that time. Wake up, fall asleep, wake up, fall asleep....... Now I'm falling asleep in the late afternoon or early evening. I'm miserable, have a mild headache most of the time, and I'm tired all of the time. I'm really looking forward to my next Dr appointment next week. I just hope my Dr has a solution for my insomnia, because since the deviation is getting worse, the insomnia will keep getting worse.

Dissapointment

2006-05-20T14:27:00.000-07:00

Since my 16 Botox shots, I expected to have great pain relief. And I expected to be able to hold my head more-or-less straight while walking, without having to use my hand. I also expected to get a good night's sleep. Well, about a month later, I have great pain relief.

I'd do just about anything now to be able to sleep more than 4 hours straight. I wake up about 2 - 4 hours after I fall asleep, then stay awake for an hour or two, or more, fall asleep for a few minutes - maybe almost an hour - then wake up again for an hour or so...etc., etc. It takes me 11 hours to get about 7 hours of sleep - if I'm lucky.

Another disapointment was my last Doc appointment. He was running late, which can happen. The nurse took my information (what's my level of pain, how am I sleeping, etc.) I told her about my sleep problem, and she said she'd ask the Doc about it. When I saw him, he examined my neck, we discussed the stiffness, pain relief, and deviation briefly, then he said "ok, I'll see you in about a month then". And that was it. So I get to spend another month with sleep problems.

Still another disapointment is my so-called "friends". The one I though was my best friend loaned me a book in Jan 2005. (I may have told this story before). Anyway, she shops at the store where I work, and occasionally I hear that she shopped and said that she means to stop by and visit me (and pick up her book), but she's just been so busy. She never did stop by. To spare her the hassle, I gave the book to a co-worker who sees my "friend" regularly when she shops. Now she won't have to trouble herself with the 3 minute drive from the store to my home. Actually, I haven't seen any of my former friends in a few months, even though I sometimes hear that they said "hi" and they'll stop by sometime. Right. I don't even care anymore.

Actually I'm glad I don't see them anymore. They look at me with sadness and pity, even when I tell them I'm doing better. They know it'll never really "get better", because I told them that much. That was a mistake. I never told them - or any of my co-workers or customers - that Dystonia is an "incurable neurological disorder", because that would just make things worse. I get enough looks of pity as it is just for my odd appearance. I don't want anyone saying "Oh you poor baby". I despise pity.

It's gotten to the point that I try to avoid eye contact as much as possible. I don't even look at peoples' faces when I'm out in public, just in case I catch someone looking at me with the "oh that poor thing" look. As much as I miss having someone to talk to, I hate the way they look at me. There's no way I'll ever be able to talk about dystonia with them without getting their condescending pity. Good thing I have the internet. I don't know what I'd do without it.

Botox day

2006-04-18T20:37:00.000-07:00

I had 16 shots of Botox today, and I can't believe how sore I was later! The shots were around 7:20am, and it's a little after 8:30pm, and I still ache. That's unusual, but I did have a lot of shots, and a little more Botox than usual. I actually had to take aspirin!

Before the shots, during the "how are you today" interview, the nurse asked me what my level of pain was on a scale of 1 - 10 (1 being very little pain). Today at 6:45am? I told her Well, it was about a 2, because it's still early, and the pain is always worse later in the day. She seemed surprised, but I didn't care. The truth is, I have very little pain early in the morning, and it gets worse throughout the day. Like now. *lol*

A nice little extra they did today was let me use a "squeezy-ball", a small rubber ball to grip during the injections. A very handy thing indeed! I was going to bring my own today, but I forgot. Now that I know they have them, I can just ask for it the next time. And the next time. And the next time...

Good news!

2006-04-14T23:44:00.000-07:00

I got a call from my Dr's office with the news that the Botox shots have been authorised! I go in for them this Tuesday. I'm surprised that it was authorised just 3 days after the request was submitted. Well, resubmitted to the authorisation board, instead of directly to the adjuster.

I'm also taking more Baclofen. 10mg in the morning, 10mg in the afternoon, and 20mg at night, then 12mg of Tizanidine at bedtime. Sheesh! At least it's doing some good.

Not half bad

2006-04-03T14:55:00.000-07:00

Before I get to the relatively good news, I have to gripe about this...

Recently, my Dr told me to take one extra pill of both my meds. I was assured that there would be no problem with refilling them early (since I'll run out earlier than before). Well, there was a problem. The insurance company wasn't going to authorise the early refill, since they weren't informed about the change in dose. I had to make a call to the Dr, and a couple of calls to the pharmacy, and after about 3 hours the Dr's receptionist got things straightened out.

So now I have both my meds. Too bad the tizanidine isn't doing much good. I fall asleep faster, but I still can't get any uninterrupted sleep. The extra Baclofen is helping a little, though. The spasms aren't quite as tight, I have more flexibillity, and I'm no more drowzy than usual.

Speaking of drowzy, this lack of sleep is really messing up my focus and concentration, and that is messing up my memory. Hopefully my Dr will have some advice for how I can get some uninterupted sleep. At least 5 hours would be nice.

I still haven't heard if I'll get more Botox. The insurance company didn't waste any time raising a stink about my early refills, but it's in no hurry to let me have the only treatment that really works. Maybe my Dr will let me take more Baclofen. It's realatively cheap, so the insurance company shouldn't have a problem letting me have as much as I need.

Ouch

2006-03-22T15:50:00.000-08:00

It's not enough that I had trouble sleeping last night. My neck spasms were worse this morning too. I barely notice the extra Baclofen, so I'll be taking it a little later each day until I'm taking it a hour or so before I go to work. Since it doesn't make me drowzy, there should be no problem, and it may help a little eventually. Even a little positive effect would be nice.

So far, I slept pretty well last Tuesday through Friday, badly Sat & Sun, better Mon, and badly last night. I wish I knew why my sleep hasn't been consistant. I take my meds exactly as prescribed, and I don't drink any caffeine. It's intensely frustrating. Maybe my doctor will have some idea when I see him next month.

More meds

2006-03-21T20:16:00.000-08:00

The extra Tizanidine is working, and I'm actually sleeping most of the night now! Amazing! It's such a nice change from being awake most of the night.

I've started taking one Baclofen in the morning. It's making a small difference, and it's not making me very drowzy either. That's good news, because I may be able to take it before I go to work.

I'm still waiting to hear if the insurance company will authorise the Botox. If they don't do it this time, maybe the Baclofen will be enough. I'm still able to work, but my dystonia gets pretty bad near the end of my shift. We haven't been really busy lately, so there'd no problem getting my work done, but with Easter comming, business will pick up. Hope I'll be able to keep up!

After the appointment

2006-03-15T18:23:00.000-08:00

My doctor said he's going to ask for authorization for more Botox. The right side of my neck is doing pretty good, but the left side is still really tight, which is why I'm a little "off-balance". I'm not counting on the authorization, because it's been less than 4 months since my last shots, but he won't need much. Maybe I'll get lucky.

He also noticed how much worse the deviation is, so he took measurements. That'll probably be helpful in convincing the insurance company to approve his request for more Botox.

Since I've been having so much trouble falling asleep and staying asleep, he recommended that I increase my dosage of Tizanidine. I was taking 20 mg of Baclofen before bedtime and 8 mg of Tizanidine at bedtime, but now it's up to 12 mg of Tizanidine. It didn't make much difference last night, but that's probably because I changed most of the earrings for my cartilage piercings, and my ears were kinda sore. They still are, so it'll probably be a few days before I notice much difference in my sleep.

My doctor said I could also start experimenting with higher doses of Baclofen, as long as it doesn't make me too sleepy. It's nice to know he trusts me not to abuse my meds, but I'm not going to take more of it until I see how the extra Tizanidine works out. Of course I'll tell him when I start taking more, but the problem is that I don't know how long 10 mg of Baclofen lasts. I can always ask the pharmasist, since Walgreens is less than half a block down the street.

As messed up as my neck is now, I'm still fairly pleased, because it's not anywhere near as painful as it was before treatment, and I can still work. I don't get many hours, but I still have a job! :-)

Getting worse, part 2

2006-03-12T14:10:00.000-08:00

The weather is actually cold here, which isn't doing my dystonia any good. Since yesterday, my neck has been turning harder and tighter, and I sometimes get a burning sensation along the back of my neck. I'm glad I have an doctor appointment this Tuesday. And I'm glad I'm off work until Friday!

I got some paperwork from the Rehab company, and there were some errors in it (due to the typist, not the Rehab agent), so they fixed it (sort of) and I signed it & sent it back. It says I have "no barriers" to getting vocational rehab and another job if I need one, even though I told them on 2 separate occasions that I can't drive. Oh well. It probably won't be an issue anyway.

I was just thinking about how lucky I am that I can knit and crochet. I no longer have a social life, but I'm never bored because I have plenty of interesting projects to occupy my time.

Getting worse

2006-03-10T01:35:00.000-08:00

My neck has gotten noticably worse over the last couple of days. It's twisted around at a worse angle, it's getting more painful more often, and when I have to walk around without my hand at the side of my neck, my neck pops as I walk (the dystonia is affecting the degenerative disk disease in my neck). Not a pleasant sensation. It's getting a little harder to work, but we haven't been too busy lately so I can still get my job done. I don't know how much longer I'll be able to keep up while slowing down.

I'll see my doctor this Tuesday, and I'll have to remember to ask him about the possibility of taking Baclofen during the day, instead of just at night, since I get a little pain and spasm relief with it. I still have trouble falling asleep and staying asleep, but any relief is better than no relief.

Oh, I sent in my renewal for my driver's license, and they ask if you have a condition that prevents you from driving safely. I checked "yes" and briefly explained my dystonia. Today I got a driver's license! I was surprised. Lots of "normal, healthy" people can't drive worth a damn, but I can't drive and I have a license. Go figure.

Laundry day

2006-03-04T17:54:00.000-08:00

We live in a mobile home park, and the laundry room is an easy walk from our coach. Ours is one of the closest to the laundry room. Lucky for me! The bad thing is that it's only open from 7am to 7pm. Never at night.

All I did was take 2 loads at once to the laundry room, then go back for the detergent (I can't carry both at once), and my neck got worse immediately. It's twisted to the right, and leaning down to the left, as far as it'll go. I know not to do more than one load at a time, but I have a lot to do, and my husband works during the day today and tomorrow. I'll probably do 2 loads tomorrow too. At the same time. I'm tired of doing it one load at a time, since it takes longer that way. I'll just have to suffer with the consequences. Good thing I have lots of aspirin and Ben-Gay.

Funny how even the small, common things are affected by dystonia. And how dystonia is affected by even the small, common things.

And I'm back to not sleeping well at night. The "good night's sleep" phase only lasted about 4 nights.

Blah

2006-02-25T15:25:00.000-08:00

I'm not too happy with my latest treatment. The Botox shots have provided good pain relief for my neck, but now my left shoulder hurts more each day and hunches up, my head hangs down to the left a little more, and I'm still having tension headaches all the time. That's in addition to my head being twisted to the right. And now that I have another new insurance adjuster (6 in 2 years), I don't know if he'll agree to authorise more Botox - or anything else - as needed. Guess I'll find out when my doctor asks for more.

The good news is that now that my cold is finally gone, I can finally sleep at night.

Latest appointment

2006-02-15T15:55:00.000-08:00

I saw my doctor for a follow-up yesterday. It went well, as they always do. I told him about the new muscle weakness that causes my head to lean down and to the left more than before, and the increased pain in my left shoulder. He said that it's a fine line between using enough Botox for pain management, but not too much to cause muscle weakness. I told him it was a nuisance but not a major problem. He said I may need more Botox on the left side. I'll be surprised if the insurance company authorises more Botox so soon. I should be able to get by with aspirin and Ben-Gay, but as long as the muscles on the right side of my neck are weak, it'll be straining the muscles on the left side.

Ah, the joys of Botox. :-)

In spite of all the weird effects of the Botox, I'm doing a lot better than I was before. My doctor has done me a lot of good. I'm not even close to being "back to (pre-dystonia) normal", but I know I never will be. As long as I'm relatively pain-free, and functional enough to keep working, I'm happy. Relatively happy, anyway. ;-)

Something new?

2006-02-06T21:29:00.000-08:00

Over the last few days I've noticed a new "thing". In the past, when I'm only using my right hand, my left arm is just hanging at my side - like it would be for anyone. Recently I've noticed that it tends to almost attach itself to my side, slightly bent at the elbow. I'm not doing it on purpose, and I can easily stop doing it, but it's kinda strange. It's also similar to the way my cervical dystonia started. I hope this isn't some new kind of dystonia I'm getting - the head shaking is bad enough! I'll have to ask my doctor about it next week.

Well...

2006-01-28T00:23:00.000-08:00

It's been about a week and a half since the Botox, and I don't notice much difference yet. My neck doesn't hurt as much, but the dystonia is still the same, I still get tension headaches, my back hurts more, my head still shakes occasionally, and I haven't had a good night's sleep about 2 months. I was hoping to at least sleep a little better by now. I was so tired at work that I thought I'd fall asleep on my feet! Maybe by 2 weeks I'll notice more of a difference. If not, it's going to be a long 4 months until my next shots.

Good news is that I got some extra pay (a "floating holiday" I never took), and I have 4 days off in a row! I can catch up on my sleep, and prune my roses - before it's too late.

Late update

2006-01-24T14:35:00.000-08:00

I finally got more Botox last week! 13 shots, for a total of 59 so far (35 during May and June, then 11 more in August). Within an hour of getting the shots, I had the usual numbness, minor muscle weakness, a stuffy nose, and for the first time a really strange laryngitis, all of which cleared up in a few hours.

Now, a week later, I'm having some trouble swallowing (as expected). There's been very little improvement, but I probably won't have the maximum benefit for another week. The one noticable improvement I've had is that my constant tension headache is almost completely gone!

I'm sleeping a little better, but there's still a lot of room for improvement in that department.

Waiting

2005-12-11T15:11:00.000-08:00

I'm still waiting for another Botox treatment. Hopefully I'll get it this month, but the Dr may wait to see how I'm doing. It's been almost 4 months since my last treatment, and I'm surprised (and glad) that it's lasted this long.

Since my job has gotten harder, my neck keeps getting worse. It's twisted around to the right as far as it can go, so I'm having a lot of trouble seeing straight ahead. I have mild tension headaches almost constantly, and the neck pain is getting worse as the muscles get tighter. The stress at work is making me a nutcase, and if I'm not careful it affects the way I deal with customers. Not good!

Surprisingly, I've only been getting about 20 hours a week at work. That's about all I can handle, and since the night managers know I have limited ability, they don't expect me to knock myself out to get the job done. I can't wait for the holiday season to end, because then there won't be as much of a mess in the store to straighten up. Hopefully that will mean less stress.

Update

2005-11-30T16:18:00.000-08:00

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.

Work and pain

2005-11-16T15:42:00.000-08:00

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.

Depression

2005-11-08T19:47:00.000-08:00

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.

Crafts

2005-11-06T01:32:00.000-08:00

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.

So far, so good

2005-11-01T16:01:00.000-08:00

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.

Paperwork

2005-10-27T22:11:00.000-07:00

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.

Not too bad

2005-10-25T19:39:00.000-07:00

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.

To start things off

2005-10-22T12:20:00.000-07:00

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.