eftychia: My face, wearing black beret, with guitar neck in corner of frame (pw34)
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posted by [personal profile] eftychia at 07:14pm on 2007-09-17

Wow, a long day and I haven't even gotten to (or not gotten to) the evening stuff yet. Walked to clinic, got physical exam, will get referral to orthopedist (for my wrist) in the mail, got several prescriptions refilled, noticed that it had gotten late while I was there, walked even farther, got one remaining prescription at old pharmacy (last one there, I think; the rest should be at the clinic's pharmacy from here on), walked home, and ohjeepersIamsotired. Ow, my legs. And back. And head -- between the television showing an educational tape loop in the waiting room and somebody's very high-pitched children (they were just-being-kids, but my ears are hypersensitive to such things today) -- and then traffic when I was walking walking walking (and walking into the sun having forgotten my sunglasses didn't help either), I started feeling like I was being struck repeatedly on my skull from the inside. Ow.

But I got through a bunch of stuff. And I'm not happy about there being no progress on my wrist, but I'll get that referral to somebody who should actually be able to do something. With all the other referrals, I'm going to have a busy couple of months doctor-wise. Considering that the results of the blood tests in August and the exam today are that I'm basically healthy except for the things we already knew about, this strikes me as kind of ironic. Podiatrist for routine diabetic foot care checkup, referral to diabetic eye exam, the aforementioned orthopedist, dentist, I think I've got a referral to a pain clinic that won't be covered so I need to figure out how to pay for it ... and a referral to a specialist to look into my longstanding sleep problems.

Hmm. For the sleep issues, she's sending me to a psychiatrist. Argh. Okay, maybe the psychiatrist will have useful clues and be able to help, but the vibe I'm getting is along the lines of "oh, sleep disturbance is usually a symptom of a psych problem" (which I don't think is the cause of my sleep problems); in either case, I'm almost certainly going to have to have the argument over antidepressants Yet Again, since even if a patient is not depressed they like to try those first to help regulate sleep (as was the reason I was given antidepressants last year). I'm not looking forward to that.

I would have liked to have been feeling better starting out than I did, but I survived. But I certainly can't complain about today's weather! Just cool enough to keep me from feeling sticky (I did walk enough to work up a bit of a sweat), without being cool enough to feel chilly; and a very pretty day.

I have to go back Wednesday to have them look at my arm where I got stuck for a TB test (I asked whether I could just take a digital photo of my arm on Wednesday and email it in; the nurse said no, but he was amused and agreed that would be awfully convenient), and I may as well have them take blood for the tests omitted from the last time (whoops), like cholesterol. *sigh* I hate fasting blood tests. Let's hope I wake up in reasonable shape for lots of walking again on Wednesday. (I guess I'd better not plan to try to do too much tomorrow. So I'll try to get to the nail salon Wednesday after the clinic, if I'm up to it.)

Though I've got that referral for a more thorough eye exam later, they did have me read the standard wall chart ... I found the deterioration of my right eye downright scary, frankly, but it turned out that the line I could read was the one for 20/30 (which is a better number than the last one I remember for that eye, but it really did seem a lot harder to resolve detail with that eye than even a year ago). For my left eye they wrote down 20/20, which I was pretty sure wasn't exactly correct. I went back later and looked up the rating for the smallest line that I could read with that eye, which they didn't ask me for, and it said 20/13. And I know I don't see as well out of that eye now as I did several years ago, either (and that, in turn, was worse than my vision in childhood). All my life they've been telling me my good eye was "20/20". Why do they bother including the smaller lines on the chart if the doctors never bother asking whether anybody can read those? And how am I supposed to guage how my eyesight has changed over the years if they never want to tell me what it really is if it's 20/20 or better? Okay, fine, 20/20 is "normal" and therefore I "can't complain" as long as I can see that well -- what if I want to know abou rate-of-change, not whether-I've-crossed-that-threshold?

And if they never test for better-than-20/20, how do they know that the normal range hasn't shifted over the years due to, er, changes in health care, environmental changes, changes in nutrition, or even evolution?

So, 20/13 in my good eye but kinda blurry at that size (that is, I could be certain which uppercase Roman letters I was reading at that size, but would have had difficulty distinguishing between a Roman 'F' and a Greek 'Γ'. And still no clue what my vision was in high school, which bugs me more out of plain ol' curiosity than anything else.

(The other thing about the "you have nothing to complain about if you test in the normal range" meme is that even if a patient had no clue sie was lucky to have "supranormal" vision -- or any other ability -- before, if one has it, one uses it and one gets accustomed to using it and acquires habits and ways of doing things that depend on it. So a loss of ability still affects a) how sie does things and potentially b) safety, even if sie has merely been downgraded to "normal". This relates back to a years-ago neurological exam where I was told I had "nothing wrong, nothing to complain about" because short-term-memory tests showed me as normal for humans-in-general. The problem was that I was no longer normal-for-programmers, and found it very difficult to do my job. I didn't give a crap how I compared to "a normal person"; I cared that I could no longer do what I had previously been able to, and had been paid to do.)

But, ah, I digress. I started this post just planning to check in and describe my day.

There are 8 comments on this entry. (Reply.)
ext_97617: puffin (Default)
posted by [identity profile] stori-lundi.livejournal.com at 11:26pm on 2007-09-17
Grrr on the sleep thing. I've been on practically every sleep med out there except for the really heavy duty ones like Halcion or Valium and none of them help me sleep any better. The thyroid meds seem to help a bit but the last time I got a solid 8 hours of sleep is the night I took phenegrin with hydrocodone after being up for 3 nights with bronchitis. Out like a light but the next night, I was back to getting 4 hours of sleep again. *yawn*
 
posted by [identity profile] dglenn.livejournal.com at 08:24am on 2007-09-20
The psych meds tend to give me bad side effects or go all the way to a paradoxical reaction (antidepressants that nearly had me driving off an embankment at 70+ MPH; anti-anxiety meds that made me a short-tempered, wall-punching asshole). I'm certain the pshrink is going to suggest psych meds (hey, they actually work for a lot of other patients) but I'm declaring those to be out of the question; I did not like how close I came to dying in December, and I'm not going back to that state.

The sleeping pills tend to work the first night, feel like they're almost going to work the second night, and stop working the third night. (There was one, I forget which, that took five days to stop working, instead of three.)

Or they put me nicely to sleep but I wake right back up again two hours later.

Sonata doesn't help me fall asleep in the evening (or in the wee hours, when I'm often trying to crash), but I found that it does help me get back to sleep after having woken too early (a frequent problem). Even there, it doesn't work especially reliably (and I have to wake up enough to realize I should take it without becoming awake that the drug can't get me back to sleep), but it does seem to help some.

Other drugs that make a lot of people drowsy don't seem to do that to me -- antihistamines, narcotics, they don't make me drowsy. (Though if exhausted enough with pain being the only thing keeping me up, sometimes Vicodin -- when I had access to it -- would allow me to sleep. Thing is, if I wasn't as tired as that and the pain was the thing sapping most of my energy, taking Vicodin would often perk me up; I'd feel alert and energetic once the pain-haze was pushed back a little.)

Pain doesn't appear to be the only thing messing up my sleep, but it is a factor. Many a time I've woken up in pain right around the time my pain-meds would be wearing off. This is why I wanted time-release Ultram for so long. (It finally exists, but wasn't covered by the state insurance-for-poor-people plan when I tried to get the prescription filled -- it's not that it has a higher copay for being name-brand, it's that they wouldn't cover it at all and I'd have to pay list price out-of-pocket, which was more than I could afford.)

It's been a while since I crunched the numbers, but the last time I did so, my average continuous-time-asleep over a three year period was something like two hours, maybe two and a half. I often do fall back asleep again the same night, but my sleep is awfully frequently interrupted.
ext_97617: puffin (Default)
posted by [identity profile] stori-lundi.livejournal.com at 01:34pm on 2007-09-20
I know I'm preachy on the thyroid issue but have you had yours tested - really tested with a T3 and T4 test done and not just the TSH? Like I mentioned before, the thyroid meds are helping with a lot of things including getting a bit more sleep as like you, I tend to sleep in 1.5-2 hour "bursts" and not straight through the night.

Also having a manic reaction to antidepressants and insomnia are signs of bi-polar disorder, which is associated with some thyroid disorders. I believe fibro is also connected with thyroid in some respects as well right? So I'd talk to the psych about bi-polar and make sure s/he understands ALL your symptoms because most, if not all, shrinks hear "insomnia" and immediately diagnose depression and completely overlook the manic side.

The good news is that thyroid meds are CHEAP, at least the ones I'm on, Armour thyroid. It's like $10/bottle which is so cheap my insurance doesn't even cover it. *hugs* Hope you feel better.
 
posted by [identity profile] darwiniacat.livejournal.com at 11:54pm on 2007-09-17
Above anything else, the short term memory loss is what I hate most about having Fibromyalgia.
 
posted by [identity profile] dglenn.livejournal.com at 08:00am on 2007-09-20
Yes. The pain, well, hurts, and that sucks. The fatigue interferes with doing things, and that sucks. (The reflux responds well to medication...) But as nasty as the pain and fatigue are, as frustrating as the unpredictability is, the neurological symptoms are the ones that bug me the most.

Perhaps it would be different if I had been primarily an athlete (or maybe not), but the loss of short term memory, the loss of the ability to juggle so much 'state', the difficulty focussing really well and getting into a 'flow state' ... In addition to being even more frustrating than the other symptoms, and more likely to make me feel helpless, these things strike at my self-image and at my sense of What I'm Good At in a particularly painful way.

The pain hurts, but for at least a little while I can grit my teeth and stubborn my way through it (not forever, but longer than I really should). And there are drugs that help take the edge off the pain, knock "10" pain down to "8". Similarly for the fatigue: if I need to, I can push a little harder and go a little longer despite the fatigue, if I can afford what it'll cost me over the next several days.

But the neurological upfuckedness isn't a "try to ignore it" thing or a "push harder" thing, it's a "This Doesn't Work" thing. I can't out-stubborn it or trade recovery time later for doing what I need to do now. When the brain-stuff hits, it's like an amputation: "part of me is missing."

And that is very, very, very hard to take.




And when we try to explain it, we often hear, "Oh come on, everybody has days when they can't remember where they left their keys. Yeah, they do, but not like this.
 
posted by [identity profile] dmk.livejournal.com at 12:29am on 2007-09-18
What's happening about getting a new car?
 
posted by [identity profile] dglenn.livejournal.com at 08:04am on 2007-09-20
That is stalled due to cash flow issues; if I can replenish the car fund (utility bills ate a large chunk of it), I have a tentative lead on a Volvo wagon that sounds good, but I haven't actually seen it yet.
 
posted by [identity profile] dreamdancer85.livejournal.com at 06:36pm on 2007-09-20
I take Trazadone for my FM/Sleep/Depression and it works well for me. You may want to ask about it. It does accentuate ANY depressant you might take (aka alcohol or any other sedative or anesthesia so you have to be careful.)

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