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extensibilities

July 25, 2016

I don’t actually want to complain about not feeling well. I want to feel well. When I was younger, I thought if I found the right person to tell what was hurting me, it could be fixed.

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I was discovered to have scoliosis when I was around 16.

Before and after, my mother would make me “stand up straight” (i.e., improve my posture) by jamming a yardstick to my back and trying to get my back to conform to it. It never worked.

It was really painful to hold the position that she said was normal, and that I should be “naturally” doing all the time.

But… if I couldn’t fake it long enough and often enough for her, she held over my head the prospect of a back brace one of the neighbor girls had to wear all the time. The neighbor girl was pretty and popular, and her status could accommodate even an ugly back brace.

I still have terrible posture. The physical therapist I saw a few years ago for my recurrent shoulder injury tried to help me correct it. It was still really hard to hold my muscles that way. Hunching over may be unsightly, but it hurts less.

Well, relatively. No position doesn’t hurt at all.

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I still have remnants of a migraine I contracted Saturday when I went outside while it was still light out. Too bright, too hot.

Last night, I was rubbing my cheek muscles, which hurt because of the migraine. Spouse gets migraines, too, but he realized his cheek muscles never hurt. Nor does he “feel all the bones in his head”, as I sometimes do.

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I can feel things you’re not supposed to be able to feel.

And they hurt.

Some of them hurt all the time. The pain with others, comes and goes.

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I have TMJ, discovered by an early dentist. My jaw swings to the right, and I can’t open my mouth very widely, or for long periods of time. Some dentists have used rubber-blocky-things to prop my mouth open when work’s being done — very helpful.

When impressions are being made for crowns, I have to think very carefully before placing my teeth together “correctly”, since that’s not what my jaws would do “naturally”. Lots of trial and error before I figure that out, though.

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I don’t respond well to pain relievers — unless I use doses high enough to be dangerous, the few that work, don’t work at all.

(For my agonizing bouts of PMS, I regularly took 800mg doses of ibuprofen; otherwise, I was in too much pain to function.)

I have unusual reactions to Novocaine.

The one time my dentist used laughing gas was terrifying: I wasn’t numbed at all, so I was in excruciating pain but I couldn’t move, at all. I couldn’t talk. All I could do was cry, which I did.

My dentist yelled at me for crying, because it “made him feel bad”. I never went back to him.

(I also had an out of body experience, which was kind of cool, and very unlike the previous one I’d had.)

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{{ 7/28 edit: I’ve never figured out why WordPress occasionally, and apparently randomly, drops items from lists. Items #1 and #6 added back in. }}

Here are some of the types of headaches I get:

  1. Migraines.
  2. Sinus issues.
  3. Seasonal allergies.
  4. Barometric pressure changes.
  5. Tension headaches.
  6. TMJ.
  7. Too hot outside.
  8. Too bright outside (reflections bouncing right into my eyeballs) — there’s a particular type of “brightness” that I can feel through walls and buildings. I wake up in the morning, with the blinds drawn, and I already know it’s a day I’ll be staying inside.
  9. Fluorescent lights flickering.
  10. Strong unpleasant smells.
  11. Strongly clashing colorways (usually built environment, not out in nature).

I’m probably forgetting some.

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I’ve had extreme myopia since I was tiny. Astigmatism too.

Lately, my left eye turns inward; it’s not strabismus yet. The eye doctor called it something else: presbyopia.

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If my feet are “too cold”, I can’t sleep, or concentrate. I like going barefoot, but in air conditioning my feet get too cold. I can’t wear sandals because my feet get too cold. I look at people without socks in the summer, and marvel. I wish I could do that.

Sometimes, outside in the summer, I’ve gotten so hot that I can feel my brain physically overheating. (Much likelier now that I live in a subtropical climate. Global warming too.) Nowadays, I know to stay inside as much as possible during summer’s daylight hours.

If I have to go out, I wear protective clothing, and sunglasses, and a hat. And still, it’s not nearly enough. I still have to minimize the time I’m subject to the sun’s rays. (Shade is cooler, but the sun is still there, radiating at me.)

My body temperature doesn’t regulate properly.

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I have to be careful of how long I’m in a hot shower. If my heart starts racing, I know to cool the water temperature down, and make sure the water hits my skin below my heart.

I love the idea of a sauna, but I can’t tolerate them very long.

I’ve often been in a bathroom when I passed out. Better to be sitting because you don’t hit the floor.

If I stand up “too quickly”, I feel dizzy and shaky. I have fainted.

Before I met Spouse, 2 different times, I fainted while out in public. Woke up in the ambulance, disoriented. No one had seen me fall, so they didn’t know what happened either. Tests at the hospital were inconclusive.

(At the time, I wrote them off to having not been eating regularly.)

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My mother and others have called me lazy all my life. It stung.

When I was a teenager, then a young adult, I forced myself to exercise regularly, generally by taking long walks. I waited for the day that I would no longer need to sit down, or take a break, or be out of breath climbing stairs. Never arrived.

I always felt old before my time.

But I guess that’s because I’m lazy. And stupid. Thanks, Mom!

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I can roll my tongue into a tube. I have cousins who can fold the tip of their tongue back on itself, but I can’t do that.

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My joints crack when I stretch my limbs.

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When I was a kid, I figured out I could use my big toes to slide my socks off, if my feet overheated at night. I continued doing that right up until a year or so ago, when I realized that maybe, just maybe, the pain I now have in my big toes might be arthritis.

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3 different specialists asked me if I had Marfan: I’m tall and (still somewhat) thin; have square shoulders; long skinny “piano” fingers, long narrow feet, flat arches. I have a bony, concave-ish chest.

I looked into getting tested for Marfan 18 months ago. Genetic testing was going to be several thousand dollars, not covered by insurance. I decided not to do it.

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My ribs stick out in a weird way.

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A few years ago, I started getting (what my doctor called) “anxiety attacks”, but when I wasn’t doing anything that could possibly make me anxious.

I’d always gotten panic attacks, in social situations. This stuff was different. This stuff felt like an elephant sitting on my chest. I felt like I couldn’t breathe. The first few times, I thought it was a heart attack. Then I thought maybe I was developing asthma.

My cardio tests came out within normal limits though. So my doctor put me on anxiety meds, which I never felt right about. I didn’t take them very long.

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I’ve had something like tendinitis in my elbows since 2011. It got much worse in my right elbow when I accidentally banged it into a wall on my birthday 2 years ago. When I finally went to the doctor about it (worried it was a stress fracture), she said whatever it was, was inconsistent with a break. She advised me getting x-rays, but I never did. I was sure it was somehow a muscle thing, and why would that show up on an x-ray?

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Sometimes my right ankle rolls, and I fall.

I had a catastrophic fall in 2000 when my right ankle rolled as I was running to cross a city street: I fell forward onto the pavement, breaking my left patella, and breaking one of my little fingers. Luckily, I had instinctively put my arms out — if I’d hit the street face-first, it would’ve been so much worse. My glasses were cracked; there was blood everywhere. I was in shock. Still, I managed to get myself to the train station. Someone nearby asked me if I needed help; when I stammered that I did, they walked away. I gingerly lowered my broken knee and sprained other ankle down 2 flights of stairs. Boarded my train, stayed standing. No one but the conductor helped me. I called Spouse so he’d meet my train.

It’s very hard to walk on crutches when you’re immobilizing one knee, but the ankle on the other leg can’t bear weight either. The ankle injury actually took longer to recover from than the broken bone.

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I injured my right shoulder in 1996, at work. The doctor couldn’t figure out quite what had happened: it wasn’t a separated shoulder; it wasn’t a torn rotator cuff. And yet, I was in agonizing pain. I did physical therapy. Slowly, slowly, it got better.

But I’ve reinjured it several times. After the last time, at yoga in 2010, I realized this is just part of what my life is. Now I’m always very very careful of how much weight I allow my right shoulder to bear.

My doctor here, when I first met her (to see her about the yoga injury), said my right shoulder “hung strangely”, that I’d probably need surgery.

The thing is, I think all my muscles hang oddly. I think I’m the wrong kind of stretchy. Which, naturally, leads to accidents and injuries. And pain.

After noticing a particular condition that a lot of autistic people I know from Twitter have, I’ve been researching it, and I think I, too, have Ehlers-Danlos Syndrome.

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