Wednesday, September 5, 2012

Yeah, Yeah, More Med Stuff on My Mind - But I THINK This Covers Most of It

I wasn't going to post this as a blog, but I posted this (with a few differences) to a Facebook myotonia group and it seemed to be appreciated. My Facebook page is private, so putting the piece here makes it easier for those who would like to share it to do so.

Much of what I post on here and on Facebook concerns invisible illnesses. And I'm always a bit worried that posting makes me looks whiny or bitchy. Problem is, if I qualify those posts, I run the risk of coming off as defensive, which might only serve to increase the whiny buzz around my words. So I've decided to do a great bit of my qualifying in this essay and then continue as usual, and people can think what they may.

What's my real emotion?

Anger. And not any - I repeat any - kind of "woe is me" or "it's unfair" anger. I'm angry because the medical system's default position should be to believe the patient, and instead it is to doubt the emotional health of the patient who can't be immediately diagnosed.

All three of the terrific doctors I ended up with (internist, diagnostic neurologist, clinical neurologist) listened to me. None of the three have big egos. And clearly, none were afraid to keep looking when an answer wasn't immediately apparent. But it took me years (and years) to find them. I've been told that my muscles may never loosen to the same baseline as those of a patient who was treated earlier. And there are thousands upon thousands of people going through the same broken system I had to go through. I'm angry about that, so I try to do what little I can to spread the word that this is happening.

I'm also angry because those who have been diagnosed with what are called "invisible" illnesses (RA, lupus, this, you get the idea) continue to have to deal with rudeness from the general public. I've heard absolute horror stories from some people.

In general, I've been lucky - I really haven't had to deal with more than looks, which means it's possible I've simply been wrong in my interpretations (though I don't think I have). And I've been shy and made it a point to pass as normal even when doing so has left me in a lot of pain, sometimes for days (I'm thinking here of the times I stood on a crowded bus or train when I should have simply asked one person or another to give up the handicapped seat).

Just because I'm angry about a couple of issues does not mean I am an angry person in general. My anger connected to this disorder is quite compartmentalized, and - I hope - channeled in a way that can do some good. My life is wonderful in many ways.

What is it that I actually have? I look okay when you see me.

I have a form of potassium-aggravated myotonia (also called sodium-channel myotonia) called either acetazolamide-responsive myotonia or atypical myotonia congenita. It's okay to just refer to it as myotonia - the symptoms of many myotonias overlap anyway. It means my muscles are very slow to relax.

It causes:
muscle tightness
pain (about five different kinds, one of which has been constant for years and which I will never have an adequate way of describing)

It also causes, to varying degrees of alarm or discomfort:
fasciculation (muscle fiber twitching)
muscle cramping

When one muscle group (my shoulder is the worst) tightens, all the muscle groups on that side of my body tighten. I've broken my upper molars because of the tightness in my jaw - a direct result of the tightness in my shoulder.

The more I do, the tighter I get. If you were to see me more, my problems would become more and more evident to you. One reason is that you'd see things I normally make it a point to hide from you; another is that it would mean I was more active, which would mean a definite increase in the problems themselves.

This disorder doesn't progress, but my muscles have gotten tighter over the years because I had no way to help them relax.

Myotonia won't kill me, unless I happen to pitch backward down the stairs or something.

Have I tried [fill in the blank here]?


Really, yes. There is no way my specialist (one the top specialists in these disorders in the world) would have me on the meds he has me on if meditation, acupuncture, exercise, massage, or any over-the-counter supplement or medication worked. Really. I'm on some serious stuff, and my doctor isn't in any pharmaceutical company's pocket. Trust me on this.

I know you mean well, but when you make suggestions of any kind, it implies one of three things: that I haven't done all I can, that I'm not bright enough to research, or that my disorder isn't serious enough to warrant the treatment that has been prescribed. And I know that is not your intention.

So, this is the stuff that's on my mind today. And now I'm putting it out of my mind. I've been typing too long and now I'm clenching my teeth. Thanks for listening.



  1. Tracy, I understand. I, too, suffer multiple hidden conditions as a result of my lightning strike. People mean well, they really do. But it can be frustrating when they look at you and say, "You look okay." Meditation helped me with the anger. I now am able to grit my teeth and say thank you rather than wonder if I can run them over with my car and nobody find out it was me! I'm also less prone to wanting to punch people!

    1. Just remember - the comments are NOT worth the fine. The comments are NOT worth the fine. Seriously, thank you, Smoky.