explanations of my medical whatzit

Okay, for everyone who wants to know: I have recently discovered I have a medical condition called joint hypermobility syndrome. "Discovered" is a bit misleading there; I've always known that I was some kind of a mutant, I've just only recently been informed that the various mutations come as a coordinated set. JHS may or may not be the same thing as Ehlers-Danlos Type III (Hypermobility Type), although since EDS may itself be a collection of disparate syndromes that only happen to look the same in clinical diagnosis, it may not matter much.

The point is, I have a thing. I have a sheaf of research papers at this point, but you can read about it in layman's terms here, and some diagnostic stuff here. Ninety plus percent of the time, it doesn't bother me. It is, frankly, pretty damn cool. People tend to twitch when you flip your foot onto your own shoulder. I get to cheat on a lot of hoop juggling moves, because I can rotate my arm almost 360° and catch stuff with my hand turned backwards. I look creepy when I stretch on a barre. I do dislocate my hips from time to time, if I try to get out of the chair wrong, but fortunately I paid attention in physics class when we covered how levers work, so I can pop them right back in.

I'm not an egregious example, so I'm not up for serious heart problems or surgery on major joints or anything like that. I'm kind of a stealth case, in fact, since at first glance I don't look like a typical EDS patient. Classic Marfanoid habitus means tall spindly spider person with sunken chest, which is definitely not me. I do, however, fit the mathematical ratios given for diagnosis: I am something ridiculous like two-thirds leg, my inseam and wingspan belong to someone at least six inches taller than I am, and I have long, hypermobile fingers and toes with uncommonly gracile wrists and ankles. I'm borderline on the Steinburg sign, but well positive on the Walker-Murdoch one. I have a Beighton score of somewhere between 4 and 7, depending on the day and whether I've stretched beforehand.

Basically, all I have to do is casually fold my thumb all the way backwards, and nobody argues with me about being officially, medically bendy.

You may notice, however, that the first PDF above goes on way too long to merely be waxing poetic about people who can bend their elbows backwards. There is a lot of other cruft that goes along with that, partly because the kind of connective tissue that is super-stretchy around joints is also super-stretchy around other things, like important blood vessels, but partly also because I don't know maybe gremlins. JHS patients also have a lot of autonomic nervous system abnormalities. Like, structural ones. Someone brain-scanned a bunch of anxiety disorder patients once and discovered, much to their surprise, that they could sort the MRI images into 'bendy' and 'not bendy' by sight.

I'm not going to go into the nitpicky technical reasons here -- it would take pages and I don't feel like looking up how to properly do journal references just now -- but the upshot is, my adrenaline response is on a hair trigger, and the system that's supposed to make all the other systems stand down when it turns out there isn't a real threat is FUBAR. The more stressed out I am in general, the worse it is. Once it gets to a certain point, I have such an exaggerated startle response that anything that would normally make me yelp in surprise (or news that would make me kind of alarmed) will catapult me straight into a classic panic attack instead, do not pass GO, do not collect $200. I can try to calm down, but once I'm on red alert, any random environmental noise will do me in. My roommate drops a pot lid out in the kitchen, I go right back to DEFCON 1.

It's aggravating beyond all belief. I can know perfectly well that there's no reason for me to be in mortal terror, and it doesn't make any difference. None of the emergency shutoff switches work right, so any random stimulus just keeps it going. I've had to set a conscious limit of about two days on how long I'll keep trying to ramp down by myself before I hie me to the ER. The panic attack isn't itself dangerous, just uncomfortable, but I can neither eat nor sleep like that, which will eventually get kind of dire. When it does stop, my blood pressure goes all whackadoo, which triggers nasty migraines, complete with visual aura. I have been told people would pay good money to see the sorts of things I see like that, if it weren't for the OWOWFUCKOW that followed.

The process is an entirely physical reaction over which I have no control. I have been telling people that for years. It makes no dent on the medical establishment. When you go in for 'panic attack' and 'migraine', and your blood work comes back normal, they ship you over to Psych Services, and thereafter no one else will talk to you. Psych does handle the medication I need, which wouldn't be so bad, except that the medication in question is benzodiazepines, and if you go in asking for those they tend to look at you like you've just offered to sell them a baby for some morphine. I confuse them to begin with, because people who are under as much stress as I am when the panic attack cycle starts are not usually that lucid, or that copacetic about their symptoms. I freaked out an intake nurse once by accident and won myself an EKG, because apparently I'm not supposed to be able to give a patient history that calmly with a resting heart rate up around 140.

Mainly, I think they don't know what to make of me. Some of them default to taking me at my word. Others assume that I'm lying so bizarrely that I clearly must have something wrong with me, but they don't quite know what, and in the absence of an actual answer they like to assert their authority by making shit up.

When I get an intelligent intake counselor who will have an actual conversation, they conclude that I know what I'm talking about and am probably pretty accurate about what's wrong with me. Result: I am released on my own recognizance with a very large bottle of sedatives, and instructions to come back if something goes wrong or they stop working. The last lady who handled it a few years ago at MGH gave me her card and told me that if anyone gave me any lip about it, I should tell them to call her and she would explain why I needed the Xanax. When I don't get an intelligent intake counselor (and they refuse to call the MGH lady, even though I brought the card with me), they don't listen to a damn thing I say and send me home with a bottle of trazodone, which is beyond useless to me for a minimum of three completely separate reasons.

I wasn't treated well on my last trip to the ER, is what I'm saying here. I'm rather livid about it still. I got an appointment with someone who wasn't a doctor last week, and have delayed my consultation with someone who is a doctor until early July. I did it intentionally, because July is the annual game of Musical Residents in hospitals all over the US. I'm hoping to get a new go-getter who wants to grow up to be House, and therefore might actually read the sheaf of research papers I am bringing to the damn appointment with me.

In any case, I'm not going to drop down dead, although if anything else goes wrong I may have to sit down rather suddenly before the head rush does me in. There's a bunch of other bits to it, like why I've started to consider Aleve a nutritional supplement rather than an occasional analgesic, and how this is related to my general Sherlock-iness, but the important bit is that I'm not going to spoil anyone else's workflow by getting myself checked into the hospital. God only knows what they would attempt to dose me with if they had me stashed in corner bed.

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