OT: A- PT: C

"I can tell you're a strong person," K. said. I smiled. It felt like the first genuine smile that had crossed my face in days. During PT I'm mostly quiet. I like B. and L. (my therapists) they're both really nice people, but the shadow of failure always seems to be hovering above me.

I do the exercises religiously, even when I don't feel like it. But last weekend, as I got ready for bed, my right hip just seemed to fall out of its socket. Not a dislocation, just a sublux, but a very painful one. The larger the joint, I find, the more painful it is for it to be out of place, even slightly.

Usually I can correct a sublux easily, but I was having trouble that day, so much so that the muscles around the hip went into spasm and I started crying and yelling and banged on the wall for my parents' help. My mother kept suggesting different positions and I went through them, pulling my knee in towards my chest, then pulling it towards my other leg, then outward. At some point it finally went back in and I sighed with relief.

And then I felt embarrassed. I had always been able to reduce my own luxations, even as a child who didn't understand what was happening to her. The fact that I couldn't this time scared me. But as always, I didn't want to face the fear just then, so I crammed it into the back of my mind.

My mother was telling me about hip exercises and I snapped at her. "Are you saying this is my fault?!"

She said no, very calmly. My younger sister has had an explosive temper since childhood, so she's used to the occasional blow-up.

She asked me to feel her hip muscles. I did. They were firm. I touched mine. They were soft and gooshy. No wonder she didn't have these problems. I felt scared again and quickly substituted that feeling with shame. I'll just have to work harder, try to build myself up.

This is, what, my fifth round of PT?

If what Dr. Tinkle says is true than the hormonal treatment I take for my endometriosis is affecting my ability to synthesize collagen at the molecular level. And trying to fight back against it seems not to be working.

If I want my PT to "take" I think I need to go on a different treatment. But I can't get my gyno to listen to me. Eff him, I'm going back to the old one. And he subluxed my hip during the operation (I was in stirrups) and when a nurse tried to tell him he just waved her off and walked away. God, that surgery sucked.

And the next doctor who tells me to go to therapy for pain is going to get asked if they'll pay the co-insurance.

My hips are in terrible shape. Such shape that I've been homebound for most the month of January, save doctors' appointments and a jaunt to Pittsburgh to crash their EDS support group. So the next time I see the doctor I'm going to ask very firmly for a prescription for forearm crutches so I can walk around again.

I get very sad when I can't go out.

He better say yes.

My first ring splint arrived, but I think the measurement is little large at the distal end. I only need to splint my fingertip joints (the DIP) the middle joints (PIP) are stable. But apparently these fingertip splints are prone to coming off unless they are a little snug.

So I need to do an exchange, work the postage into next month's budget. Even though it was ill-fitting, I was excited to see it. I promptly started pushing every button in the house: the microwave, the dishwasher, the icemaker, the thermostat. It was delightful not to feel the joint collapse and the accompanying pain.

K. urged me to do whatever I could to spread the word about EDS.

I asked my mom what she thought of a bikini car wash fundraiser come spring. She said I'd hurt my shoulders.

I'll take that as a 'yes.'

Altered Mental Status

That was the diagnosis on my discharge sheet from the ER. They wanted to keep me for observation, but I recognize the effects of my pal dysautonomia when she comes a-callin'.

This is already going to be expensive what with the ambulance ride and the testing and the CAT scan and the catheters, but what gets me is that it didn't have to happen.

It happened because they didn't fill my Florinef on time. It was a joint effort 'they', they my neurologist's office, they my doctor and they the pharmacy. I thought I could get away with one week without it.

I thought wrong.

I was at the cancer center where I go for iron infusions for my anemia (it is also where people go for chemo, hence the name.) As the nurse rooted around for a vein, I began to get light headed. She stuck me around four times...still no luck (looking back, this should have been a sign to me that my blood wasn't flowing properly.)

I was trying to shake the light-headedness which was severe, despite my being seated. I raised my feet. I put my head down on my arm.

Then I passed out.

My mother shook my awake. I looked at her, apologized for 'falling asleep' and then passed out again. My mother called for the nurse who tried to rouse me without success. Then I strange thing happened. I woke up, or thought I did. I sat up.

I couldn't talk. I couldn't really move. I could move and focus my eyes. I sat there and stared into the mid-distance with more and more people calling my name. I was otherwise alert. I could hear, I could see, I could feel and smell.

I could smell those awful smelling salts they stuck under my nose. My eyes watered. But I didn't move or otherwise react.

One nurse goes to call an ambulance. 'Ah, shit.' I think. 'Here we go.' My feeling is of frustration and a bit of confusion. Not fear. I've had, incredibly, more frightening things than this happen to me.

Still, I wish my autonomic nervous system wouldn't do things like this.

Now the EMTs are hauling up by my armpits and knees. Now one is doing a sternal rub. Now he is doing it harder. Now he does it again.

I CAN FEEL IT AND IT REALLY HURTS.

But I can't say so or react. The link between my mind and body is very weak. I wonder if this is what locked-in syndrome is like, and that thought does frighten me, so much so I consciously turn away from it in my mind.

One thing I notice is that if the situation is calm, I can talk a little, although it's very, very difficult.

In a quiet corner in the hospital, waiting for a room I gently poke one of the EMTs in the side. He turns to me instantly, looks at me, says my name. "Wh–?" I manage.

"Where are you?" he guesses. "You're at the hospital. We brought you here after you passed out. Do you remember?"

I start to answer in the affirmative but the other EMT has gotten wind of my return to the world and grabs a nurse. The resulting commotion renders me unable to speak or move again.

It's like I only have a very, very little bit of pressure. And things like loud noises and sudden movements and flashing lights sort of use it all up.

I needed to tell that EMT to lay me flat so I could recover more quickly. I needed to tell them to give me fluids and lot of them and epi too, if necessary.

But I couldn't. And my mother, bless her heart, goes to pieces in these situations and never fails to be worse than useless. She doesn't mention any of my diagnoses to the nurses or doctors, instead talking about the virus I got two years ago and how my joints hurt when the weather gets cold. I was listening to her verbal diarrhea and getting really, really angry and frustrated.

I told her I was typing out a list of my diagnoses and what to do in case of every situation I could think of where I might not be able to speak for myself. That was she can just give it to the doctor and go sit down somewhere.

I love her though.

In any case, next there were catheters and a billion blood samples and a rectal thermometer (I couldn't open my mouth.)

I swear I haven't had my temperature taken in my butt since I could walk and I can assure you it was a very unpleasant and unwelcome experience.

At the end of it all, I calmly asked to go home. I didn't want a bigger bill. I didn't want to take the chance of getting an arrogant or worse, abusive doctor. I was tired and bruised and I wanted to go home to my cats and the new Law and Order SVU (I caught the last half.)

I wanted to tell you all about it, since it relates directly to entry below this one, but I'm still not sure how to feel about it.

When I offend EDS it punishes me with pain. When I offend dysautonomia it does things like this.