The Medical Roller Coaster Continues

Night and day, the difference between August 25th's rheumatologist appointment, and the ophthalmologist one earlier. All my questions/suggestions were things she was already thinking about. She talks to me as if I have rights, and a brain.

I'm on Lyrica now. I hate drugs that build up in your system, because by the time you know they're harmful, you're already full of the stuff, and it takes days to pass it out. It's an anti-convulsant used for less-than-full-blown epilepsy, so it's a good idea, to quiet down the "current". Like most drugs though, the possible side-effects are the things I'm taking the drug to relieve.

Aug 16 ophthalm appt

It was a total humiliating debacle. I was in no condition to think or speak, and had surprises thrown at me, misunderstandings I couldn't fix but only react to. A diplomat could have done it, but not someone whose nervous system was on fire.
The MD mistook a smaller, recent eye difficulty for the *whole* problem, and wouldn't be moved from that. I ended the appt, and sort of staggered out, mumbling things in shock. This was after being put through two tests, *both* probably unnecessary, one was I know, with bright light shined into my eyes, and they insisted on doing it every appt, which they hadn't told me before.
Now I realize that the smaller but still painful problem she was fixating on (because it's the one part she could *see*) *does* need treatment. I'd pushed it into the back of my awareness, gotten "used to it", but there's grit in my eye(s), and my eye and lid are getting scraped. I could at least have *that* problem treated, and feel better.
Now I've burned my bridge behind me, though. From her perspective, I'll be assumed to be a nut and an "uncooperative" problem patient, when really, things were just happening ten times faster than I could follow, or repond intelligently to. (I think so slowly now that I have to slow down my Talking books on tape way down, to understand.)
I've needed an advocate for 25 or 30 years.

2nd Shoe

The second shoe dropped today. I went for my second appt. to that ophthalmologist, and it turns out that based on some bizarre, myopic misunderstanding of what I'd said last time, she'd already snap-diagnosed my 30-year long neurological state, affecting every part of my body, as an eyelid rash. She was absolutely certain and unmoveable on this point. I left. The appointment was humiliating, and I don't use that word lightly.

I absolutely hate doctors. I've been hit over the head with this for 30 years, and it's time I got the message. As I waited for the taxi home, I realized that I'd never had the slightest chance of getting medical help in this country.

Something Not Bad Happened, Therefore I Am Confused

I went to an ophthalmologist today whom I would have to describe as unique, in that I didn't hate her. Neither did she sneer at me or dismiss the condition. She was actually nice. I haven't been to an ophthalmologist since the 80s, as far as I can recall, because of a series of awful encounters... that's how consistently nasty they all were. I doubt that's changed, since I've seen plenty of other specialists since then with similar bad results. This time though, I heard good things about this ophthalmologist as a person from EI circles and went for that reason.

I'm waiting for shoe #2 to drop....

Low-functioning soul

It turns out that a low-functioning nervous system results in a low-functioning soul. Loss of brain function is making me smaller and less interesting, and less capable of experiencing. No wonder I'm losing contact with everyone. The soul is still here inside of me though, screaming to get out and feel.

New GP appt

Scary, unrelenting eye pressure, plus very bad experience with new doctor that is hitting me very hard. I have no time for this, for one false start after another, with these people. I'm in too much pain, etc., to make sense to a doctor or to be seen as someone worth listening to. I felt as if he were on the other side of a tunnel, I noticed that at the time... He has no idea that I'm in such a horribly altered neurological state, as I struggle to think and remember and focus and explain. He probably thinks it's "normal" for me, a sign of craziness, not evidence of a sane person struggling to get past a neurological barrier to communicate. I have to have an advocate.

My eyes have had enough for one life

I worked hard at relaxing eye muscles in hopes that the sensation of pressure was fooling me, and that the problem was eye muscle cramping instead-- that at least I have some control over. I spent most of two days on conscious relaxation of the eyes, lying in the blackened room I have to sleep in, sometimes managing some sleep. It backfired. Later on I ended up with what felt like very bruised, black and blue eyeballs. This was only the next day, almost like a sort of "hangover".

Andre Aggesey (sp?) the tennis player was talking on NPR recently. He said there had been times when uncramping certain muscle spasms after a game had automatically caused other muscles to cramp painfully, because (I hope I have this right) these muscles function together, and for one to relax, the other has to tighten, and vice versa. That has often been what it feels like in my eye muscles. Also though, I feel pretty sure now that enough pressure is on the eyes, as they're pushed against the bony walls of the eye sockets, that they're being bent out of shape a bit, enough for pain and these flashes in the corner of my eyes when I look back and forth.

Anyway, I dropped trying to relax the eyes, and decided just to leave them alone, and at least any damage I did might heal up. The aspirin/caffeine powder and muscle relaxant help very little and I've OD'd badly on them, and I'm cutting back. The pain is less, but the pressure remains. It feels sort of like trying to keep a jawbreaker in my mouth that's too big, except that we're talking about my eyes in their sockets.

I wish to God someone were reading this.