Showing posts from July, 2015
The last time we met, the doctor told me she thought "we" needed to get me some "new coping methods". This is usually the part where I figure out how to change doctors, or just quit making appointments, because this is usually where they start giving me sales pitches on the wonders of CBT and stop reading things I hand them. I try not to be overly paranoid, but I got just about thirty years of "stop whining, you don't need medication, you just need to stop having the wrong feelings" and that makes a mark. I'm willing to give this one the benefit of the doubt, because she is an Energetic Young Thing who doesn't know me all that well yet, and also because she's not the therapist person. Frankly, I can ignore just about anything she says as long as she doesn't start pestering me to take something that won't end well, or threaten to stop letting me have something unless I toe the party line.

The therapist person has made no such noises…
Important discovery: The Colbert Report is virtually impossible to speechread.

Oh, Colbert faces the camera straight on, and enunciates pretty well, probably a side-effect of un-learning his Southern accent as a young adult. (He gets it back a wee little bit when campaigning for the President of the United States of South Carolina. I've seen him mention he learned to quash it at college when he realized it made people assume he was less than brilliant, but environment is hard to resist.) It's just that lip reading is mainly guessing what fits the visemes you can see, based on body language and context, and "Colbert" runs almost entirely on sarcasm and insane troll logic. It leads to a lot of moments where you have a graphic of, say, a convicted money launderer up on the left side of the screen, but find yourself watching the lip flaps and going, "...wait, did he just say 'banana'? Angrily?" We shall not even speak of "The Wørd", where the …

Yet more time on the doctor-go-round!

So I have been down to the doctor's office yet again. This one is actually pretty smart; she will read things I bring her and talk about receptors and neurotransmitters with me, and twice she has brought up things I had been delaying asking her about because normally they're things that make physicians pat me patronizingly on the hand and shut their ears to anything else I say.

She will also listen to my arguments for and against things. I laid out my case for trying propranolol, and it was not her fault that it didn't work right. She also apparently thought I was ultimately right when I told her flat out that not knowing whether I will get the medication that works when I break down and ask for help caused me a lot of stress, and led to me not taking my Xanax when I was actually supposed to. I pointed out that if she were worried about tolerance, she wouldn't have offered gabapentin; if she were worried about discontinuation, she wouldn't have offered gabapentin o…

In which I try to explain American media

For those of you outside of the US who don't understand why Jon Stewart stepping down as host of The Daily Show is such a thing, it's because the program is, er, terrifying influential. I'm given to understand that most of the world gets news from America a lot more than America bothers to read news of the world, but I don't know how much of our context you can guess from it, particularly when the context is batshit insane. If you get television from the UK, it's rather like Mock The Week, only it runs Mon-Thurs for most of the year, so large portions of the program are produced on the sub-24 hr turnaround time of a real news show. I assume there are similar programs pretty much anywhere making fun of your leaders doesn't get you shot.

Next time you sit down to watch MtW, imagine for a moment that you live in a world where citizens aged 18-35 peeled themselves off the sofa and voted in the next general election because they were listening to what made Dara Ó Br…
I didn't set out to become a costumer. I sort of tripped and fell into it. I get most of my jobs that way, actually.

I've generally known how to sew since I was a kid. It was one of the few useful things my mother ever intentionally taught me. It's a common skill on her side of the family, who all picked it up for roughly the same reason I did, which is that I am very short, very leggy, and very wasp-waisted. Nobody in the entire history of pret-à-porter fashion has ever manufactured clothing for my body shape. I had to learn how to tailor pants in sheer self-defense. Once you've taken enough things apart to fix them, putting them together in the first place is a lot less intimidating.

I also like dressing funny, so after I moved out of my parents' house, it was inevitable that I'd cave to temptation and start making elaborate costumes for Halloween. I was de facto in charge of the annual nerdery for about a decade, back in Flagstaff. It started out small, with…
I try to keep my nose out of religious discussions. I know just enough to know that I don't know what the hell I'm talking about. When I discovered, in my poking around, that Stephen Colbert is in fact veddy veddy Catholic, I admit that I twitched. The public face of religion in the US at the moment, particularly Christianity, is conservative, patriarchal, and dictatorial. There are millions upon millions of people of casual to moderate faith living in America, and none of them tell me about it in casual conversation anymore, because they've learned the hard way that people who are not religious mainly know about yours from the loudest of the lunatics that end up on TV. For Christianity, it's evangelical fundamentalists like the Duggars.

I've managed to avoid most of that for, say, Islam, since I had no real experience with it before, and now I live in a place where I see women with scarves wrapped around their heads all the time and nobody gives them a second glan…

Saturday Serial: Superman #7

I derive comfort from the oddest things sometimes. When I'm sick and/or miserable for an extended length of time -- which in fact I have been, and they have just given me another bottle of drugs which does not work correctly, and my next return appointment isn't until next week -- with no clear end in sight, I cope by grabbing onto something, and researching the ever-loving fuck out of it. My brain is the only part of me that keeps working right when I feel lousy. I had the honest-to-God flu once, the kind where you spend a few days wondering if you're going to die and the next two weeks praying that you will, and in those horrible waking hours between one dose of drugs wearing off and my next dose of drugs kicking in, I crammed the entirety of the FAQ into my brain. I now know far more about resuscitating dead VCRs than I will ever conceivably get to use.

Another bout of problems coincided with the Doctor Who Restoration Team inventing yet another p…

Happy Mooniversary!

Happy Moon Day, everybody! Since I have been rummaging through clips of old news programs on YouTube for completely unrelated reasons, I thought it might be appropriate to share this playlist of news coverage of the Apollo 11 launch, flight, moon landing, and return home.

And if you still need something to watch, here's the post-splashdown, post-quarantine press conference:

Poor Neil Armstrong spends most of his stage time fidgeting like mad. He clearly wants to skip right to the part about Moon! MOON MOON MOON MOON MOON. I was on the MOON. Ask me what it was like ON THE MOON. I'm given to understand Armstrong was a very quiet man and never all that fond of public speaking, although he did a fair amount of it at the request of other people; Buzz Aldrin and Michael Collins are much better at just wording at the assembled reporters while the slides are up. They are all using their clout as "people who have been TO THE MOON" to declare that they're just not going to…

Saturday Serial: Superman #6

A number of people have asked me whats goin' on in re: doctoring right now, and expressed hopes that I got over it soon. Y'all have been much better than I expected. I don't generally tell people when things are wrong with me, because A) most people don't care, and B) people who do care will suddenly swarm all over me because they think that's helpful. It probably is for other people, but I'm a hermit most of the time, and if I constantly have to explain to a crowd of people that no I'm not going to die and no you really can't do anything to help, other than just believe me when I say I can't do that right now, I end up wanting to punch people in the face to make them go away. Then I feel bad about it, because it seems really ungrateful to punch people who are trying to help. But all y'all have been really good about it, so thanks.

A couple people have expressed concern about my heart. A lot of people with Ehlers-Danlos (or other connective tiss…

Saturday Serial: Superman #5


Here's how my Monday went.

Bad news: The only follow up appointment I could get with the psychiatrist was at 10am, which is about two hours before I'm normally awake, never mind coherent. I did manage to stumble down there, after about half a gram of caffeine.

Good news: I got a doctor who listened to me! It helps that the main sign of JHS is being able to bend things like fingers backwards, which I can do on command. (The pinkies, I find, impress people a lot.) I gave her a bunch of research papers and explained that I was going through psych services because if you come in complaining of things like 'migraine' and 'panic attack' and you don't have weird thyroid levels or obvious drugs in your blood, they throw you at the mental health people and thereafter no one else will talk to you. She thought I made enough sense that she apologized for throwing me back at the general medicine people (NO NO THAT'S TOTALLY OKAY) because she thought I should be handling most of this through a GP.…

Snap, crackle, pop!

Terrifyingly true. Ask anyone who's ever lived with me. I sound bone-crunchingly horrible when I stretch. Some of it's cavitation, some of it's ligaments slipping over other things. Some of it's just mystery snapping noises. I've popped pretty much everything at one point or another, some of it not on purpose. Things that I crack intentionally include all of my fingers and toes (multiple joints), my wrists and ankles (sort of a quiet clicky noise), my elbows (alarming crunch), both patellae (loud hollow pops, either by kneeling or by twisting my knee sideways), everything all the way down my spine (including up around my atlas/axis), and both hips (only occasionally). Mercifully, I do not get terrible noises out of my TMJ, nor do I dislocate ribs while coughing as some EDS patients do, although if I twist and stretch just right I can pop something whose location suggests it's the medial ends of my clavicles.

Other people find it deeply creepy, and I do it anyw…
I don't remember when I lost the ability to cope with geopolitical news. I know I had to stop falling asleep to the half-hour cycle of CNN Headline News when I moved to college and was shoehorned into a 13'x 15' room with another human who didn't want the TV on all day and night. The flat refusal to read news was sometime later. It was sometime between 9/11, whose coverage I ended up watching on a television in the downstairs lounge right off the dorm lobby, and the second time we (officially) started shelling Iraq. The latter happened while I was on an airplane, and my embargo had been going on long enough that I was pissed at the pilot for announcing that "hostilities [had] commenced" over the PA while we were six miles above the Rockies and I couldn't get away.

(When I landed in Phoenix, I learned that my sister had freaked right the fuck out when the announcement came, terrified that someone was immediately going to shoot down the completely random an…

Saturday Serial: Superman #4


just assume I'm swearing a lot right now

As the medical establishment has yet to be any help with this round, I am left once more to my own devices.

Just to be clear, I have no issues with the idea of having to have medication on hand for the rest of my life. Better living through chemistry, and so forth. If something's broken, something's broken. If your pancreas is falling down on the job, you take insulin. My autonomic nervous system is busted, so I need sedatives. I am cool with this. Other people may not be, but they can go fuck themselves.
What I am not cool with is being beholden to someone who can arbitrarily decide I'm not doing my therapy homework right and retaliate by taking away my access to something I plainly need in order to function. The treatment they keep wanting to give me is cognitive behavioral therapy, which solves a problem I do not have. Don't get me wrong; CBT is great stuff and helped me immensely in figuring out how to deal with my mother, and then later in figuring out how to not …
Yesterday's explanation alluded to my bendiness being related to my Sherlock-iness, which probably strikes a lot of you as either hyperbole or insanity. It isn't.

The "stand-down" system mentioned previously is a nervous-system-wide organization which relies primarily on a substance called gamma-aminobutyric acid, or GABA to its friends. GABA is the primary inhibitory neurotransmitter in humans (most mammals, actually, as far as I can tell). Its function in the fight-or-flight paradigm is, once threat assessment has established that there's no immediate danger, to shut down all the various subsystems responsible for adrenaline production, environmental hyperawareness, suppression of non-urgent autonomic functions like digestion, etc. All the side effects you would normally figure came from being in a state of mortal terror.

In other words, GABA is the off switch. Mine is sticky, if not broken. You have to bang on it pretty hard to get the abort signal to fire. Th…

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 w…