It has come to my attention that May is supposed to be Ehlers-Danlos Awareness Month. I've neglected to post anything, on account of I've been busy coping with the consequences of Ehlers-Danlos. May is a busy month for me. I perform, I do technical work for live theater, and I admin at a couple of places that deal with both of those things. This May, I ended up working for 21 consecutive days without a break. I didn't exactly mean to, but a combination of a coworker having to go out of town for a family emergency and several people who scheduled their spring recitals in September and then failed to do any planning until April slowly whittled away my days off until I had Things To Do every goddamn day for three solid weeks. Ehlers-Danlos Syndrome is officially a genetic disorder of collagen formation. The direct effect is that all of the connective tissue in my body is basically made of Silly Putty. Collagen keeps all of your various bones and muscles strung together, so it ...
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Hello from the floor, where I once again find myself. Lying face-down on the floor as an adult is an experience. I can trace all of the steps I went through to get here, and all of them made perfect sense at the time. But then I end curled up like a pillbug on my bedroom carpet next to the rat cage, flat on my shins and the top of my head, and I have the nagging feeling I'm somehow doing something wrong. The rats are vaguely curious, but that's mostly because they're convinced I only get out of bed to feed and/or love them. They're not really wrong, but they don't understand the idea of an economy, and gloss over a lot of the intermediate steps. I assumed I was the only one who's been slowly melting into a puddle over the past month or so, but I know a few other people with the one-two Ehlers-Danlos/hay fever punch who have been similarly reduced to primordial sludge, so iunno. Objectively, my seasonal allergies are more annoying than disabling, but anything tha...
I recently had to explain to a couple of people that if I try to work more than about half time, I lose the ability to take care of myself. But what does that really look like? Well, for starters, my living area descends into unbridled chaos. I do most things from a nest of blankets on the bed. My room isn't big enough for a full ergonomic computer desk setup, and I wouldn't use it if I had one. Sitting in a chair like a grown up gets really painful. On the bed, I can stretch out or lay down or type all spidered up with my knees by my ears if I need to. I tend to force myself to work until I can't anymore, at which point everything I've been working on gets shoved onto the TV/rat desk or the nearby floor. Picking it up is not a high priority. Dirty clothes pile up on the floor. I don't put on real clothes unless I'm leaving the house, and I change right back into pajamas as soon as I get home. My day clothes stay where they fall. Again, picking them up is so far...
This is the pile of pills I knock back every morning to keep myself more or less functional. The long white 5500 pill and the two blue ones are painkillers: 500 mg acetaminophen (paracetamol outside the US), and 440 mg naproxen sodium. This is combining analgesics from two different families with two different mechanisms of action. They're both non-selective inhibitors of cyclooxygenase, but acetaminophen, a derivative of coal tar, seems to work mainly on the central nervous system, whereas NSAIDs like naproxen have a more peripheral action that includes anti-inflammatory effects. I try to be conservative with the Tylenol, as I like my liver and I do occasionally drink. Naproxen, I am more cavalier about, as it doesn't cause me any GI issues, and I rarely exceed the '3 pills in 24 hours' box instructions. Prescription naproxen for osteoarthritis is 500 mg q8-12h, which puts my usage well within standard therapeutic range. Starting out with two naproxen instead of one i...
You may have noticed I've been AWOL a lot lately. This is because the roommate configuration of the apartment has changed, and I've had to pick up a lot more work. This sucks. Aside from taking up a lot more time, it means that even when I have free time, I tend to spend it staring at the wall, because I'm not really capable of doing anything else. Why am I so blank all the time? Observe the Tiredness/Fatigue Scale to the left. One of the symptoms of connective tissue disorders like Ehlers-Danlos is chronic fatigue. I don't think anyone noticed anything when I was a child, mainly because nobody was paying any attention, and when they were, they were busy approving of the way I camped in the corner with a book and had no discernible needs. It got pretty prominent when I was a teenager and people started trying to force me onto a more conventional 'adult life' schedule, which not coincidentally was when I started pushing back against people's expectations and ...
A couple days ago, the somewhat-overdramatic juris doctor had a guest instructor in. I don't usually bother to go when he does that; I'm too old to waste time taking classes with anyone whose choreography doesn't make me desperately want to get up and dance. But the SOJD was going to be in class with us, and I thought, my, wouldn't that be an interesting thing to see? I've never seen him as a student before. So what the hell, I signed up. The lady he had in is a successful commercial dancer, who was actually scouting for a performing arts academy the week she was here. She can fuck all the way off. She said we were going to start class with a warmup. We did not. We slammed straight into a lot of high-speed, high-impact cardio. I have a mild case of asthma that can be triggered by sudden bursts of exercise in an unfavorable environment -- I've done it by suddenly running to catch my bus in August -- or just by excessive heat and humidity. We're still stuck ...
I hate heat. Normally I write these things at 2 am because that's when I'm awake. I'm writing this particular thing at 2 am because that's when it's not 95F outside. It's not quite 95F inside, but it gets stupidly close. My room only has one window -- so, still legally rentable as a bedroom in the state of Massachusetts -- and for some reason only the upper sash will open. I'm not dumb enough to wedge an AC unit into the top of a busted antique double-hung window, so my bedroom has been temporarily converted into a large solar-powered oven. The rat has been spending his days in the living room, where it's climate-controlled. (Rat, singular. I am down to only Tseng at the moment. If you don't keep up with my Facebook, Errand, the remaining old man foster, finally got to go back to his original mommy. He was very weirded out by being packed up into a carrier and trundled out to the Fenway, but happy to be returned to someone who is home enough to sati...
Hello, all. It has been a rough pandemic. As you may have figured, since I am in the performing arts, I have been completely out of work since this shitshow began. The earliest venues will open up here in MA is September, which is not helpful for me, because I need to be out of my current place by 8/31. No one will rent to me on my Patreon income, so I've been trying to figure out how to supplement that with other online work. My first thought, frankly, was camming. I'm attractive and I know that, and I don't care about being naked in "public". I have a lot of opinions on the legitimacy and legalization of sex work, but making a statement would be a convenient bonus; I'd be in it for the tips. As the appliance menagerie on the Flintstones used to say, "Eh. It's a living." The best camera I currently have is attached to the slightly-less ancient laptop. You know, the one with the broken hinge that won't hold the screen up on the right. Only th...
I'm still alive. Sort of. In the past few weeks, I've had a grand total of twenty-one hours where things felt like they were going reasonably all right. Twenty-one. I went back and checked timestamps and counted. I landed a short-term gig teaching dance for a bunch of kids. It wasn't absurdly lucrative, but if I could earn that much money every week I'd be fine long-term. I was on site for 6 hours a day M-Th and had a four hour evening on Friday. I wasn't even running around with the kids for all that much of it, I just had class periods separated by free time. It ruined me to the point where I was having trouble feeding myself and showering consistently. I would get out of there and try desperately to get something useful done and just stare at a wall, if I didn't lay down "just for a minute" and wake up hours later. I don't think it's necessarily the physical activity that's the problem. I can do four hours of hardcore dancing in...
I apologize for the lack of intelligent content here lately. It is summer. Summer is hot. Heat does not agree with me. I have become an indolent puddle, mainly made of an emulsion of apathy and discomfort. On the rare occasion that I scrape together the wherewithal to move, I am surprised to be reminded that I still have bones. Many of which I can see in the mirror now, because the one thing I am doing is making repeated trips to the dance studio. It's free, they like me there, and someday I may accidentally make some progress. Otherwise, I tend to do things like lie here listening to four solid hours of Dateline Mystery on YouTube, because I can't be bothered to turn my head far enough to the right to actually watch it. As far as I can tell, this is another one of those weird symptoms I can't do anything about. It is fatigue unrelated to sleepiness. More sleep and more food do not alleviate it. Nor does double Bronkaid, for that matter, which is a dose of ephedrine th...
I keep going through cycles where I try to convince myself that there's nothing wrong with me, I'm just a lazy sod, and I'm whining over nothing. Symptoms are subjective. Nobody likes getting up early in the morning, they do it anyway. Nobody likes hot muggy weather, but they don't let themselves melt into a useless puddle on the bed all afternoon. Then shit happens, and I am reminded that not only are all the things I think are wrong with me actually wrong with me, I am usually introduced to a brand-new symptom that I didn't even fucking know was a thing. The tech who did my hip imaging mentioned in passing that low body temperature was a known feature of EDS. Judging from the comments I got when the nurse couldn't get an IV into me last week, and the fact that she tried to fix that by heaping me with heated blankets, I don't just think my hands and feet are always cold, or feel chilled when I'm short on sleep, I actually am having temperature regulat...