So as far as I know I’ve been/had:

• Autistic since birth, probably since before birth, knowing the current science and the repetitive movements my mom felt inside her. But definitely atypical stuff from day one, which are all small things high when added up in retrospect amount to autism. Diagnosed age 14, again ages 18-19.
• Autistic catatonia starting around age 12, diagnosed when the first major paper on it came out while I was 19. (Diagnosed by the same shrink who’d known me since I was 14.)
• Neuromuscular junction disorder, probably myasthenia gravis or hereditary myasthenia, since I was 18 or 19. Diagnosed, provisionally, age 33 using a single fiber EMG.
• Adrenal insufficiency, probably starting around the age of 27, Diagnosed at age 33 by which point it had become so severe they couldn’t find cortisol or ACTH in my blod. They assume it was there or I’d be dead, but they also assume I wouldn’t have survived much longer.,

So I had this big health crash when I was 27. One of the few measurable things we knew at the time was that my galvanic skin response, a measure of physical and emotional stress, went from very high to almost nonexistent. But we didn’t get around to figuring out it was adrenal insufficiency until much later, after way too many close calls in the hospital where I’d be seen for other conditions but be much sicker than I ought to be for these conditions.

I want to be clear I am talking about adrenal insufficiency. Not adrenal fatigue. Adrenal fatigue is a catch all term used by quacks for anyone experiencing fatigue, and requires no actual testing to confirm it, or bogus testing. It is dangerous because it prevents people from getting treatment for what they really have (which may even be genuine adrenal insufficiency) and can result in people getting strong steroids that are dangerous to the human body, who don’t need them p. vAdrenal insufficiency is where your body is not making enough cortisol and you can die from it. It’s usually easy to measure. I was diagnosed by a blood cortisol test, a blood ACTH test, another blood cortisol test for a baseline, and an ACTH stimulation test. That’s how real adrenal insufficiency is generally diagnosed.

Anyway my point is; some of my autistic catatonia traits have gotten better ever since the exact time of the health crash. In particular, I freeze for less often and for shorter durations. And I don’t anymore run around the house bouncing off the walls without any ability to control my movements. These things can happen they are just much rarer. I also have fewer full-body stims and rocking, and more hand-based stims. I still have trouble initiating movements, combining movements, crossing boundary lines, and doing things without being promoted verbally or physically. But I think I’m a little better at those things too.

This makes me wonder if there’s something about stress or cortisol (or ACTH) that plays a role in autistic catatonia. But I don’t really know who to ask. Lorna Wing is dead. I don’t trust Dirk Dhossche. I guess maybe Martha Leary and David Hill could shed some light on it, but I’ve lost their email addresses. There’s not a lot of researchers looking into autistic catatonia these days, even if there’s more than when I first showed signs.

Also, if you’re autistic and you have both autistic catatonia and adrenal insufficiency, I’d be interested to compare notes. But I don’t know anyone with both, so I’m not holding out a lot of hope there. I’m mentioning myasthenia gravis too just because the symptoms overlap with adrenal insufficiency to the point we were surprised to find I probably have both, not just one or the other. So it could be either one interacting with the autistic catatonia.

Also please don’t give me crap for using medical terminology here. It’s the only terminology I have and without it I couldn’t communicate.

Posted with Blogsy

The account may not be forthcoming for a bit, because it’s nasty-migraine-week (female hormone stuff) and I’m quite overloaded on top of that. Last night I managed to vomit and urinate just about everywhere but the toilet, and to go outside and get confused into immobility by the sheer number of blades of grass out there.

I’m still trying to write it but it might take awhile. Right now, even lying down and staring out the window seems unnecessarily overloading.

By the way, comments urging me overtly or covertly to view myself as in need of quacky biomed crap or as being in denial about some kind of preventable but ultimately lethal (and apparently pathetic) deterioration, are going to get deleted before they’d have been published. You know exactly who you are, and I do too, so don’t waste your time on me.

I was given a test that showed that I had candida in my body (so does everyone, it’s a normal part of the body, but the quacks don’t tell you that). My parents and I were told that I needed to follow a very limited diet (not just the infamous “candida diet”, but a diet free of foods the guy claimed I was allergic to, that I am not in fact allergic to). And I was supposed to take heavy-duty oral anti-fungals. Ones with serious side-effects.

The anti-fungals made me violently ill. I spent the entire day vomiting. The fact that this can be a side-effect is one reason that these drugs are not meant for use unless someone truly needs them. Instead of considering it a side-effect, the doctor told my mother that I would never “get better” unless I continued to take it and that I had to “get worse” before I could get better. He said that I wouldn’t have that reaction if I didn’t have systemic candidiasis (it’s, in reality, a common reaction whether or not you have a fungal infection of any kind). There was a concerted effort to guilt-trip me into taking the drug.

I stopped taking the drug anyway, because I couldn’t be persuaded to take it again and people decided not to force the issue. But I stayed on the diet for a long time. The diet caused the immediate positive-seeming effects that any restrictive diet causes anyone (google the word orthorexia to see what I mean), and then over the course of a long period of time I got less and less nutrients and felt worse and worse. I was finally persuaded to stop the diet, at which point I got healthier and healthier.

Fast forward to the present day. I’d started discovering bright red patches under my breast, sometimes with little white flakes on them. I showed one to a friend, and she said it looked like her candida skin fold infections (the kind of candida infections that even people with perfectly fine immune systems get). It started sort of coming and going. I showed it to one of my case managers, a nurse, who said she’d contact a doctor about a prescription of something for it. She agreed that it looked like a standard fungal skin fold infection. And she agreed that even when it wasn’t visible it wasn’t really going away, and needed treatment.

So I went to a doctor about two other (and completely unrelated, as far as I know) skin problems. In passing, I mentioned the under-breast thing. At which point he looked under the other breast (the one that didn’t have the redness under it to begin with) and said he didn’t see anything. Then his supervisor looked under the correct breast (the one with usually the redness) and the redness wasn’t there. I told them that my friend had seen the redness, the nurse had seen the redness, it was coming and going on a regular basis, and that the visiting nurses were supposed to have a piece of fabric they could stick between my breast and the skin beneath it, and were supposed to talk to the doctor about ordering a (topical, not oral, of course) medication, like a powder or cream, to put on it. They said that sounded like a reasonable thing to do to it.

My nurse called the doctor’s office, and was told by the people there that the doctors had not seen anything under my breast and were therefore not going to do anything about it. Apparently her having seen something and my friend having seen something and me having seen something didn’t count for anything, it had to be there right when the doctor looked.

That was yesterday. Today it hurt a lot under my breast. I looked and there is a large, unmistakable bright red streak with little white flakes all over it. I just took it next door to my friend so that she could witness in the future that indeed this thing does exist and that I am not making up tales of a vague fictional phantom breast streak. She said that this time it’s totally unmistakable what it is, and that it’s much worse than before.

But I have no cream or powder to put on it, and no fancy cloth things to stick to it to keep the skin from touching other skin. Because unless a doctor saw it happening, as it was happening, then a nurse’s word, my own word, and a friend’s word, combined, are apparently not enough.

So I was once described as having a systemic candida infection, when I had no such thing, simply because I was autistic and someone ran some dubious tests. And the doctor nearly tried to shove a treatment down my throat with assorted dire threats if I didn’t follow a ridiculous treatment for a non-existent infection. Now I have a real, absolutely obvious, can’t be missed skin infection that is probably candida and that hurts. And the doctor is claiming that it doesn’t exist enough to treat because the one morning I was in his office it wasn’t visible. I think the universe must be playing a bizarre joke on me, because it seems ridiculous.