Another joint bites the dust

Friday, I somehow badly subluxed my left shoulder, as well as having the usual slippage in my neck. Needless to say, I was not happy. My housemate mostly managed to get the shoulder back in, and it turned out he has some basic massage skills, so he was also able to relax my neck enough for the vertabrae to slip back towards their original home. Still, sleeping and folding laundry and really attempting to do anything at all during the weekend was likely to be brought up short as my right hand grabbed my left upper arm and I offered whatever curses came to mind, which was a lot. By Sunday night, though, I had pretty much assigned the blame for the continuing nuisance to me handwriting more than usual. What with being left-handed, I figured that, since I wasn’t exactly babying my arm, I had managed to inflame the tendons.

But I don’t think that now, since this evening, the stupid shoulder seized up again. And this time, with Carapace’s help, we figured out that the problem is orginating in the collar bones. Damn things are twisting, which locks up the shoulder, which then makes the muscles seize in the upper arm. It has been so bad off and on this week that I seriously considered seeing my doctor. Why did I not see him? Because experience has proven that any appointment for a subluxed or dislocated joint will coincide with a spontaneous reduction in that joint. I am a desperate woman to even think for a moment that seeing a doctor will be of any use in anything other than lightening my bank account and wasting my time with pointless tests.

So, I don’t know what to do. This past weekend my attempt to go enjoy myself ended up with me standing and watching, afraid to put any new pressure on my shoulder as it started acting up again. This weekend has grander plans: road trip, museum, maybe some downtown San Antonio driving during which it would be real darn convenient to be able to steer. So, what to do? Anyone have any bright collar bone ideas?

One of us?

Thanks to EDS Alert Newsletter, I learned that a Swiss doctor is speculating that Michael Jackson may have had Ehlers Danlos Syndrome. And if you don’t read French, you can read the article in mangled English, thanks to the power of Google Translate.

What do I think of it? Well, not much. I’m not big on following celebrities, so I have no idea if his symptoms really do match up with EDS. But even the speculation is helpful, I think. So few doctors have any clue at all regarding EDS. If a few of them read this article and start taking joint hypermobility seriously, then I will feel that something good has come from the circus that has arisen in the wake of Jackson’s death.

How wheat causes dislocations

It began innocently enough. I saw the fried catfish on the menu and, hopeful, asked the waitress how it was prepared. “Oh,” she gushed, “it’s coated in corn meal. “Just cornmeal?  I wanted to make sure. “Yep. I’ve worked here nine years, I know all about how everything is cooked.”

By midnight, I knew wasn’t as familiar with the kitchen as she thought she was. The evidence? The sores that were developing in my mouth. Sores that make their painful appearance when I’ve been eating something with wheat in it.  Damn. Damn damn. I took a benedryl, washed my mouth out with antiseptic mouthwash and went to bed.

When I woke up, I instantly wished to stay home.  Some mule driver had come into my room during the night and had their jackass kick me square in the face.  I felt horrible. The sores were hot little wounds. And my sinuses were swollen–another effect of the wheat, combined with the ragweed in the air. I ate some plain yogurt, making sure to get it all over my gums. I took another benedryl. I sat down in despair. Damn that mule. I should take something for the pain. Naproxen? Who was I kidding? I already had sores in my mouth and probably my entire gut. Maybe Darvocet would help.  

I went to work, hoping the Darvocet would kick in. Or the benedryl. Or that my face would explode and kill me. Really, any change would have been welcome.  After a couple of hours, the sinus swelling from the allergies started to go down, though the pain was still relentlessly hanging on. Another couple of dispiriting hours went by. Suddenly—Pop!  My jaw went into place and the pain began to dissipate.  

Wow, my mouth sores had been annoying me so much I hadn’t even noticed that I had dislocated my jaw. Too bad, because I could have fixed that right off.  So that’s why I felt like I had been kicked in the face. I must have been grinding my teeth in discomfort during the night. I’ll try to avoid a repeat of this experience, and take the pain killer before going to bed tonight. Because those mouth sores? Still there. I’m sticking with the grilled catfish from now on.

a bit of whinging

Poopy poopy poop poop.

OK, first, I think I have tracked down my migraine-inducer to the latest GF flour I was using. Back to corn and buckwheat! But in the meantime, I have a mouthful of cold sores and the intestinal distress that lets me know that things don’t look so great on the inside either. One week and running. So to speak. Maybe by the end of this week, it will finally all be out of my system. But I have a lot of this flour leftover. Any ideas on what to do with it?

Second, it’s hell time at work, which means a lot more physical movement than my joints like. Everything hurts. Except for the things which are tingly with pinched nerves. Things like, oh, my hands.

Third, I’m not very happy with people purposely getting in the way of me doing things that make my work place more accessible or with them making comments about how I do things. I don’t care if it isn’t the way you do things. It’s the way I do it.

But fourth is funny. My housemate just woke up screaming and prancing around from a giant cockroach having run into his pajamas. I only have pain. He has a cockroach in his drawers. I think I’m ahead.

Whiner

In 2002, a French woman was told by her doctor that she Ehlers Danlos syndrome and that her life over. Amazingly, rather than immediately hit him with the nearest blunt object, Clara Blanc has decided to fulfil his verdict by seeking death. She claims she isn’t suicidal, but all the same, wants the right to demand that doctors administer lethal drugs whenever she wishes.

Clara, there’s virtually no chance that you will ever read this, but if you do…

GET OVER YOUR DAMNED FOOL SELF!

Fuck’s sake, girl, you’ve got crappy connective tissue. It makes life a bitch sometimes, doesn’t it? But chances are that it isn’t going to kill you. And you won’t likely become more of a vegetable than you already have made yourself into with your self-pity festival. Yeah, you’ll probably have to use a wheelchair at some point. Big whoopdedoo. There are people having bombs lobbed at them right now. Others are being attacked by sadists wielding machetes. Some people are being held in small, dark places, tortured and unknown. And every single one of them is fighting to live. You want to die? Do it yourself. Freaking wuss, can’t even take responsibility for your own death, much less your life. You claim to want to be the arbitrator of your death? What makes you think you can do that when you won’t be arbitrator of your life? You can’t face up to the hard choices in life. You want everything easy, and when you found out that your life won’t be easy, now you want to be guaranteed an easy death.

And look at the company you are keeping. Dignitas? The Hemlock Society by any other name is still a freaking death cult. They are nothing but bastards who see someone poised on the ledge, ready to leap, and begin shouting “Jump! Jump!” You need to make new friends. People who take life as they find it and live it, knowing this is their one shot. You have plenty of time to be dead, but only now to live.

Bleah

My neck has been squeaking all day. And thus my head has been hurting all day and my gut upset. I had hoped it would get better but it seems to be getting worse. God, I hate the noise of squeaky neck.

FLK

When the doctor first suggested that M.D. had Ehlers Danlos Syndrome, the internet was still in its infancy. From the little I could gather, we needed to determine what type of EDS she had, and whether her vascular system was involved. And that she should be seen by a geneticist.

Now, I don’t really know if the specialist we were sent to was actually a geneticist. His shingle read “endocrinologist,” which I always thought was a whole ‘nother specialty. But what did I know of the wacky ways of medicine? So, in the door we went. After not too long a time in a very unpleasant waiting room, we finally were ushered in to see the doctor.

He was not a particularly inspiring sight nor did he act as if he had any interest at all in M.D. The first thing out of his mouth was “Why are you here?” When I explained that we were looking for an opinion about what sort of EDS M.D. might have, or if she had it, he said “She’s not an FLK” and left.

I was aghast. An FLK? Even then, I knew what that meant…a funny looking kid. The guy was into freak shows. I guess we were lucky, seeing as he was a jackass, that he didn’t ask M.D. to do the standard EDS sideshow tricks.

But it was, for us, a completely useless medical trip. We were trying to get some advice about her pain, her mobility problems, what was safe and what was dangerous for her to do. Whether this might kill her. And all we got was an unwanted window into the bigotry of someone who styled himself a doctor.