HYPERMOBILITY CARTOON: In which I come unhinged — again

I have severe Joint Hypermobility Disorder.

I dislocated my jaw chewing on a piece of baguette.
I walked a couple blocks to the dentist, did the new patient registration, and they advised me to go to A&E [Accident & Emergency]. So my husband picked me up, and four hours later my jaw had been clicked back into place, and I had a photograph of my x-ray, and some codeine.

Yeup, another datum for an Ehlers-Danlos diagnosis; pretty sure this takes me over the tipping point. Awaiting echocardiogram and visit with a geneticist.

HMS-EDS_Revenge is Sweet and Spiced-15

Cartoon title: I WAS CHEWING ON A PIECE OF BAGUETTE AND MY JAW DISLOCATED The doctor (a Black man with a beard and dreads, wearing a white coat and stethescope) is showing me my temporal-mandibular joint x-rays. (I’m a white woman with short dark hair and glasses, wearing a navy hoodie.) The doctor says to me, “That shows where the mandibular condyle of the jaw came out of the temporal bone of the skull.” I’m thinking to myself, (I’m going to turn that baguette into a nice, soft bread pudding. Revenge is sweet — and spiced!)


Requesting your thoughts, please

Howdy folks,

This morning I’m again in pain and rather stiff.  I know that many of you have rather specialised knowledge, and would appreciate your thoughts on getting diagnostics.

I have a number of conditions, both common and uncommon, including Raynaud’s, migraines, cough-variant asthma, tinnitus & hyperacussis and Auditory Processing Disorder, motor tics, and assorted neurological glitches including prosopagnosia (face-blindness) and ADHD. Getting these things diagnosed over the past decade has been wonderfully helpful for those that can be medicated, figuring out how to make accommodations for those that can’t, and being able to prove to others that I have documented reasons for difficulties, and that I’m not being lazy or stupid.

However, the crux of this post is that I also have Read the rest of this entry »


For the first time in months and months — far longer than it should have been, but there we are with the insane busyness of life — a friend and I got together at her house for dinner.

“You look like you’re finally relaxing,” she said after I’d been there a little while, and we decided to not wait in conversational limbo for the third person (who never did show).  “You were so stiff when you came in,” and she made reference by some expression (that now escapes memory) of how I was indicating being relaxed by behaving more normally.

Not “normally” in the er, Normal (neurotypical) sense, but me-normal, where I felt comfortable enough to sit and rock slightly, to not worry about making eye contact, to get a bit flappy at funny events or when agitated, to shed the pent-up motor tics.  To just be me. To “let my hair down” and to set aside unnecessarily restrictive social norms.  To eat my chicken and rice with a fork, and the still-crisp cooked green beans neatly with my fingers (as one does with fries or asparagus), because her table was Nicely Set for our aesthetic enjoyment and yet we weren’t standing on formality.

We talked about typical stuff, like the foibles of spouses, the concerns for college-age kids, the drudgery of eternal home repairs, the quirks of cats, of temperamental computers and the thrills of new mobile phones, of career changes, and the vicissitudes of economic times.

We also talked about atypical stuff, like the difficulties of college education and employment when dealing with various educational/neurological disabilities, of managing arthritis pain and joint issues, of the wonders of TMJ bite blocks, of dealing with the profound cluelessness of the general public for the extreme pain of migraines and how hospital Emergency (A&E) is a horrid place to physically be when in the throes of gut-wrenching-head-splitting pain and the snarkiness of some medics therein.

Crip chicks like we don’t diss on our disabilities, we diss from our disabilities.  It’s not poor-pitiful-me whining but the healthy pitch-a-bitch whining from someone who understands, even when our respective glitches are not all issues shared in common.

I need more social life, but there’s so much of ordinary socialising that I find enervating.

I’m not antisocial; the interest in socialising is not a binary form, where one either does it or doesn’t do it.  But over the years I have learned what I actually enjoy (as opposed to what one is “supposed to” enjoy).  My intro/extroversion levels vary wildly because some kinds of social interaction are nothing but draining, while others leave me (if not physically) at least spiritually recharged.

I’m not fond of socialising by large quantities of people all chattering with each other in the same room, where the conversations get all blenderized from my Auditory Processing Disorder, to where I end up trying to tease apart sequential fragments of half a dozen unrelated conversations, fruitlessly trying to follow just one voice or two, and reasoning out from fractured context what some of the mis-heard words could possibly be.

I’m not fond of socialising where the content gets watered down to less-consequential subjects of chit-chat, by dint of less privacy and some unwritten code of how long one is “supposed” to entertain time with another guest before moving on, and by the other unwritten rules of conversational quid pro quo, where my monologuing to fully deliver a story complete with back-explanations and thesis statements delivered at the end is discouraged in favor of witty repartee.

I like the time to mutually share and analyse our respective news, and the real, content-laden answers to our mutual questions of, “How are you?”  The real “How are you?” question, not the fluff of “How-are-you?” or “How-was-your-day?” that is the social minefield trying to distinguish between polite interested query of acquaintances and polite disinterested query of associates (that latter social coin that is all form and no content), or the mental quagmire of trying to answer “How-was-your-day?” when the question is so vague and our answers are so experientially linear and tangential instead of whatever the hell others were expecting.

I was comfortable — we both were comfortable — because together we had created a social environment that enabled our mutual comfort.  It was an agreement that had been developed by long familiarity and by various conscious decisions over decades, to create a friendship that fulfilled our individual needs over the culturally-proscribed forms.  True friendship enables positive interactions, and supports needs and affirms and enriches our lives.

Here’s a toast to real friendships!


Random bits from bed (thoughts before arising)

I tossed and turned all night.

Well, not really. Tossing and turning implies far more bounciness and energetic mobility than I had. Rather, I woke up every couple hours when it was time to shift to another sleeping position. There were no comfortable positions to be had (there never really are), but with enough pyjama-straightening to remove the deadly little wrinkles pinned under my hips and shoulders, by shifting the spare pillows to completely pad between my bony knees and feet, and plumping up my head pillow again, I could reach a level of acceptable discomfort and fall asleep again.

I get plenty of REM sleep; in fact, it seems like all I do is dream because any disturbance wakes me from a dream. (An article in Scientific American describes just how more interrupted sleep results in longer and more intense dream periods.) I just don’t know that I’m getting enough deep, restful sleep. When I’m sick I’ll be in bed for eight to ten hours more-or-less sleeping, but I still seem generally stuck at six-hour nights. I can’t remember the last time I slept through the night, but it was several years ago.

The good news is that Read the rest of this entry »


It’s a Real Pain

Bath time. I steady my balance by holding the sides of the tub, and ease myself into the hot water. There I play “What’s My Bruise”, trying to figure out how I acquired all the motley souvenirs. There’s a large turquoise blodge shaped like Antarctica on the top of my right foot, a constellation of dark purple marks on my left knee, several random fading-green spots on my forearms, various dull plum-coloured dings on my thighs and calves, and a deep tissue olive-green zone the covers most of the fleshy area between my left thumb and the back of my hand. As usual, I have no idea how or when these happened. I bruise easily, and between my joint hypermobility and crappy proprioception I’m always bumping into things. There’s nothing to do about the bruises, but I monitor them to make sure that things do heal up and disappear within a couple of weeks (my mother had diabetes), and to watch for infections (like the ingrown toenail cellulitis for which I just finished a round of antibiotics). And so it goes.

Unless you have a rare CIP mutation (Cogenital Insensitivity to Pain), you’re familiar with aches. We’ve all experienced the ordinary headache, the run-of-the-mill bruised limb, the annoying paper cut. These “owie-boo-boos” are annoying and ephemeral. Many people experience severe but thankfully brief* pain with childbirth or traumatic events such as broken bones or appendicitis. Yet none of them begin to describe the issues faced by those with chronic pain problems such as arthritis or TMJ, or the re-occurring severe pain of migraines.

We tend to view pain as strictly a physical problem, treated with various analgesics and/or physiotherapies. You hurt, you take treatment, the pain goes away, your wound heals, the event stops. That’s the way it’s supposed to work, and if it doesn’t, then you’re not doing it right. We even have child-birth classes to teach people the “right way” to have pain (yes, I say “people” because their partners are there to learn how to reinforce the appropriate responses during L&D).

But chronic and re-occurring severe pains don’t follow that socio-medical model. Read the rest of this entry »


How to Get Ready, in N Recursive Steps

(That’s N for an unspecified number.)

Thank goodness I have that extra 15 minutes built into my morning routine, because I needed all of them today. It was one of those mornings when I’m amazed that I got out the door and where I’m going without having achieved some minor catastrophe. The whole ADHD routine would be quite comical were it not so damn typical.

Of course, there are a few people who “don’t believe in” AD/HD. And there are people who believe that it exists, but can’t quite get their brains wrapped around the whole How and Why of it. You know, What could possibly be so hard about something as straightforward as getting dressed, eating breakfast, and driving off to work?

Well, it’s like this: Read the rest of this entry »



This sucks. It’s one of those problems that has gone from intermittent to nearly-constant. There’s really nothing to be done about it. I ask my doctor every few years, just in case. But no, there is no cure. There’s not even much to do about tinnitus. When at home or in the car, I mask it by playing music. At school, our students are generally noisy enough to drown it out.

My tinnitus is usually a high-pitched squeal, about 14-17 kHz, like a mosquito that whines for long periods, seemingly next to my left ear. The whine gets louder or softer, but rarely goes away. When it does, it returns with a sudden *pop*, as though someone turned on a radio. Once in a great while it’s stereophonic buzzing static in both ears, or even a fluttering sensation like a butterfly stuck on my left ear, but those are pretty rare. I know that I’m not just hearing actual machinery because I’ve heard it when standing surrounded by hectares of prairie, without a single operating machine in sight or earshot.

The good news is that I have no reduction in my general hearing. The problem did make itself known after I’d been working in noisy labs for several months. Well, I thought they were noisy labs. Read the rest of this entry »


Oops. Ouch.

Here’s one of those quandaries: Which is worse, accidenting one’s self frequently, or not responding well to anæsthetic?

It’s not that I react badly to local/topical anæsthetic, just that I don’t react to it much at all. But I’m getting ahead of myself. Which is not unusual because I’m often unsure of where I am in space.

Being chronically uncoördinated is technically known Read the rest of this entry »


Less Is More

This is the fourth day in a row I’ve awoken without a cracking TMJ headache, thanks to getting a new bite-block to replace the other one lost.  Sure my joints ache a little and my ears ring more often than not, but I’m not spending hours a day in borderline dizzying-nauseus pain, whee!  Curiously, although more stress means more ticcing, less pain doesn’t necessarily mean less ticcing.  Less pain does means sleeping better, which is a nice sort of positive feedback loop.