(This was going to be a quick note about how I'm doing, but it turned into a long ramble about pain and drugs.)
I have no idea why I woke up this morning with "Lawyers, Guns, and Money" firmly wedged in my brain. (I do know why a little later "Octopus's Garden" started alternating with it.)
Boring "how I'm doing" stuff that I put here for the folks who worry about my when they don't hear from me (and when I fail to show up at rehearsals): I'm not doing all that great, and yesterday either I screwed up the timing of my drugs or the day just wasn't going to work out no matter what I did. I started off with pretty severe pain from my hips down, bad enough to reach for the drugs. The drugs helped for a few hours, and I actually got important to-do-list items done that were days overdue (like, ah, paying my auto insurance premium, which was overdue), and then the pain came back along with fatigue. This time the pain wasn't as bad as it had been earlier, but I knew I wasn't going to continue doing stuff without more drugs, and I've missed a lot of rehearsals lately and there's a wedding gig coming up, so I took the drugs at a time that I hoped would make them make me able to get to rehearsal. It almost worked, in that I got everything ready and almost felt well enough to get behind the wheel, but it didn't work well enough, because I didn't quite feel up to driving until a quarter to ten. Rehearsal runs from eight to ten, and the location of last night's rehearsal was an hour from my house. Then I got all frustrated and sulky.
To backtrack a little: I don't rate pain on a one-to-ten scale, partly because I've never been sure whether the folks asking me to do so mean a linear scale or a logarithmic one, and partly because I'm usually too busy trying to figure out what the pain is going to do to my plans to figure out what number to assign to it. So for me there's "If I find a tourniqet and a circular saw before the drugs take effect, the arm is fucking coming off," which thankfully hasn't happened in a while (there's a table saw in the basement BTW); and there's, can't-think-straight pain, and below that is all-I-can-think-about-is-the-pain and "I can't stand this"; then there's "I'm miserable, miserable and unproductive, and I can't even sleep," and "I'm miserable, maybe if I sleep I'll feel better, why can't I get to sleep?" (the first means I'll take drugs and possibly sleep, the second doesn't hurt quite enough for me to realize I need the drugs, so I stupidly try to out-stubborn the pain and fail). If I'm alert enough to pay attention to what I'm feeling, there's also, "I should not have to put up with this, I should take something," and also, "Okay, this hurts a lot but I'm not sure it's bad enough to warrant putting narcotics in my system" -- the problem is that there's also, "I can stand this if I have to but I won't get anything done, though I might be able to sleep, so if I need to get things done I'd better take the drugs anyhow," and I often don't realize that as quickly as I should. Below that are, "Wow, this hurts", "Wow, pain is tiring", "hurts enough that I'll limp when crossing the street", "I forgot that muscle hurt until I tried to use it", "Huh, this hurts" (distinct from "wow"), and the all-too rare "Okay, this is a bit uncomfortable" and the elusive, only one day and one afternoon in the past seven years or so, "Something feels different ... oh, nothing hurts!". The point of this paragraph is not pain-dicksizing, but to provide the context for the next paragraph...
I've got a problem dealing with the "I won't get anything done unless I take drugs" level. Because I see the narcotics (Vicodin when I had health coverage and thus had a doctor to prescribe it; Canadian OTC codeine now, which does not work as well and comes with caffeine which does unfortunate things to me) as "the scary drugs". The drugs one has to worry about building up a resistance to, which would be bad. The drugs one could possibly become addicted to, which would be easier to fix but still annoying. The drugs the government gets all funny and suspicious about. Fortunately that class of drugs (codeine, hydrocodone, and oxycodone) don't make me feel loopy or spacey or high, nor do they make me crash (though if the pain is all that's keeping me up, they'll let me crash), but they still count as The Big Guns, the drugs I'm nervous about. So I've got this idea that to take narcotics, the pain has to "be bad enough to deserve the scary drugs". And when the pain isn't "bad enough", it feels like I'm ... "cheating" or something ... to take them. So y'all can see the problem when the pain isn't bad enough on its own for me to feel I need the narcotics, but I'm not going to do the things I need to do if I don't take them. I wait too long. I try "resting just a little while to see if I feel better". I sometimes go four or five days telling myself, "Once I sleep, maybe I'll feel well enough to do things," before I finally realize what an idiot I've been, and take the drugs. If what I need to do is important enough and urgent enough, such as a gig (or, if I've missed too many rehearsals lately and a gig is coming up, a rehearsal), I'll realize earlier on that I need to give in and take the scary drugs, but a lot of the time I just get farther and farther behind while sitting on the fence.
(From the other side, there's the pain that's bad enough to warrant taking drugs but mild enough that Ultram (tramadol), a non-narcotic pain drug, might take care of it. On the one hand the codeine is easier to replace than the Ultram -- I used to have a prescription for it; now I've got a friend's leftovers that sie illegally gave me, and for which I am extremely grateful. On the other hand, if I take the codeine instead out of fear of using up my stash of Ultram too quickly, then I'm using the scary drugs for pain that "isn't bad enough".)
Another problem is that I'm not always sure how much, or which, drug I'll need. Note that none of these drugs make the pain go away; they take it down to manageable levels. (The one time Vicodin made my fibromyalgia pain actually stop, I'd taken it for dental pain (after a wisdom tooth extraction) on a day when the fibromyalgia wasn't at "bad enough for drugs" levels.) Sometimes I discover that I should have taken a larger dose, or that I should have taken codeine instead of Ultram, but it's forty to sixty minutes after I took the first dose and will be another forty to sixty minutes before I feel the effects of whatever I take next. (Yes, I know published references say it should be twenty minutes. In my body they take longer to take effect, and don't last as long as they're supposed to, just like most other kinds drugs for as long as I can remember.) If the thing that was important enough to take drugs for despite not-quote-drug-worthy pain levels has a schedule, this can be a problem. If I'm up against "how long before I get too tired (or sleepy)" limits instead of wall-clock time constraints, it's a similar problem.
So yesterday I did realize I was going to need
drugs to function, but either I screwed up the timing/dosage
or I was doing worse than I realized and the drugs weren't
going to get me there anyhow. Either way, I wound up
missing yet another rehearsal, not going to
anniemal's
house, and not even really sleeping well. But I did pay
bills that I'd meant to take care of over the weekend. And
I finally folded the tunics that have been sitting on the
drying rack since a couple days after Pennsic, and put them
away in the garb chest (a large Rubbermaid bin). And I
wrote back to the folks at
MAD to
say that I'd like to play bass for their fall show, and
will try, but that I wasn't certain whether my body was
up to it. But I didn't restring either guitar that needs
it, and I didn't get where I'd planned to go.
Today my lower back hurts a little less but my legs hurt a lot more, my neck hurts, and my arms are stiff. I'm going to try to get out of the house anyhow though. Wish me luck. My left thigh hurts intensely enough to warrant codeine on its own (I'm pretty sure my upper thigh is too thick to cut through with the table saw, BTW) which you'd think would make the decision easy, but I can't help thinking, "I took codeine twice yesterday; if I take it today will I be using it too much?" Overthinking: my curse. (Well one of my curses. There's also that were-catfish thing.)
I need to do something though. I haven't seen
anniemal since Pennsic, and I haven't seen
Perrine since before Pennsic (she's at
anniemal's
and
syntonic_comma's house), I need to try
to de-clutter one of the bedrooms enough to have a houseguest
Monday night, and I've lost track of how many people
I owe email. (I'd like to catch up on LJ comments as
well, but really that isn't as high a priority as the
rest of the list.)
Hmm. This isn't meant to be whiny. I don't feel like whining, despite being frustrated, cranky, and in pain. What it's supposed to be is an examination of a particular bit of upfuckedness in my head that gets in the way of my dealing with my body, and enough explanation of the context for that to make sense, along with a status update for friends who worry about me. But I wrote enough about pain that it's probably at least a little "woe is me" by default. Oh well, whine-avoidance would be nice but I'm not going to worry about it right now.
[Edit: This particular flaw in how I cope with pain isn't new, nor is my awareness of it. I've been aware that I do this and that it's a problem, but have not yet managed to fix it. Still working on that. And other things. There must be a way to retrain myself to a more useful pattern.]
So sorry your hurting!
Pain Sucks. FM sucks. Have you attempted any thing like cold or heat? Know that is lame, just hate to think of you in pain. Did not see you at the war this year. My Mom said to say hi. You and she did some snuggling under a cloak a few years ago. Cold and foggy, at the war. You had a great wool cloak, and she was cold. Was at the tavern, what ever it was called. you had been playing there. (she thinks.) might have been like 10 or more years ago..
She had to pull out early due to the rain.
Re: So sorry your hurting!
Sorry I missed you at War. I spent a lot of time in my camp, and when I got out it was mostly to go to classes or to show people stuff, so I didn't get to do much visiting or shopping. There are a lot of people I wanted to see but didn't. (I think one week of War isn't enough when I'm going to spend half the days taking it easy to recover from the other half. I need to pace myself better and go for both weeks, or I need to convince lots of people to come visit me in my camp.)
"Hi" back to your Mom. :-)
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my arthritis is really, really terrible today, and i have no idea why. i elected to work from home rather than go out in the heat, and from there into the freezing-cold over-air-conditioned office, and then back into the heat to go home, because large temperature differentials seem to be a big trigger for arthritis pain. but my hands are really, really achy -- enough so that i really ought not be typing, but i have work to do... and not really anything else, anyway. my shoulders are tender to the touch, which is always a very bad sign for me, and my hips and ankles are so stiff that when i get up to walk into the kitchen, i have to do it hunched over like an old lady.
i find smoking pot to be quite helpful with the pain, but i'm out at the moment. and of course, that shuts down my brain as well, which means i can't use it during the day anyway. not to mention that it's counterproductive to my mental health issues because it only delays the emergence of anything new so that when that thing pops out, it's had time to fester longer and get uglier.
of course, now that i have insurance, i can find a rheumatologist again. and prescription COX-2 inhibitors, taken daily, are really helpful for preventing this kind of flareup. i need to get round to doing that soon.
my pain is nowhere near as severe or debilitating as yours, but man, chronic pain is a bitch to live with. it saps your energy, it interferes with your life, and it's hard to get other people to take it seriously sometimes -- if they can't *see* that there's something wrong with you, they'll often forget. like the other day when i was gadding about san francisco with a couple of friends, and when we got onto the crowded Muni car they automatically took the two remaining seats, leaving me to stand while the train crept at a snail's pace through rush-hour traffic. and i'd already been on my feet, in bad shoes, for much of the day, while they'd both worn better shoes... i'd been invited to brunch, you see, and i wasn't expecting there to be an extended hike portion of the program. so i ended up bailing out early and going home to lie down.
i don't think of myself as a disabled person, but recently as the pain has gotten worse and i've found myself stymied by jar lids and unable to tear up unwanted credit card offers some days, i'm increasingly aware that i am becoming disabled whether i like it or not. and i hate that. i hate that there's so much i can't do now.
grrrrr.
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The most useful doctors I've seen have been rheumatologists. Yay for rheumatologists.
As to which of us has more debilitating pain, it probably depends on which day you look. I haven't had to walk hunched over all that often, but I have had to descend stairs backwards so that I could use my arms more when having a bad leg/hip day, and sometimes I lurch. Yes, it's a bitch to live with, and I think the energy-sapping aspect bothers me even more than the sensation of pain does. (Also the cognitive glitches that -- "fibro-fog" and short term memory problems -- that accompany fibromyalgia; in addition to getting in my way and being frustrating, those attack a major aspect of my self-image.) I know what you mean about jar lids and junk mail, too -- on a good day I still have strength but sometimes I'm afraid I'll hurt myself if I use it, and on bad days I feel as weak as a kitten.
Despite the "invisible disability" problem, most of my friends seem able to understand on at least an intellectual level, and some of my friends are better at spotting when I need to slow down than I am. Still, it's easy for folks to overlook or forget ... and even when I'm with people who do understand, I still feel bad for not being able to hold up my end sometimes (like when we're packing up the sound system after a gig, or when friends are moving).
That last bit connects to what you said about not thinking of yourself as a disabled person. It's hard enough when I've got "the old, capable me" as so much of my self-image, but add in the fact that my condition -- an my limits -- are variable ... "I'm not in a wheelchair," ... "On a good day I can do stuff," ... "I can lift that box even though I know I'll hurt for two days if I do."
I've had people tell me, "Well, we all find stuff we can't do any more as we get old." That misses an important point: I (and you) have been robbed of several years of being able to do those things. I can, with effort, adjust to knowing that I can't push my body as hard as I did when I was nineteen. I have a lot more trouble dealing with not being able to function like a normal sixty-year-old when I'm a good long way from being that age yet.
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were-catfish thing
???
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One stumbling block (which might not be a show-stopper) is that different parts of my body are affected at different times, which complicates the "Can I do $foo?" test. Another problem is that when I'm doing poorly enough to need drugs is also when I'm not thinking most effectively either, so I need reminders to apply the tests.
Yeah, it's awfully analytical and downright geeky, but hey, I overthink and analyze already, so what's a little more note-taking to gather data to design a "do I need drugs" test, eh?
You didn't know about my ichthanthropy? I'll try to remember to write a journal entry explaining that soon.
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Like a previous commenter, I'm also curious about what, if anything, heat/cold does to fibromyalgia pain. The only times I've ever hit within your first five levels of pain---toothache and feminine problems---heat could help, but the pain reason and type is very different.
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Heat sometimes helps, depending on where the pain is. It's hard to get the heat to penetrate far enough into my thigh, for example, and even though a knee is easy to warm up, heat seems to help less on my knee than on my forearm. At best, it helps enough to be worth doing, but not as much as I'd like. Cold seems to make pain more likely, especially in my legs.
By the way, for future reference, cloves are useful for managing dental pain. A pinch of ground cloves wedged against the problem tooth has quite a dramatic effect (but it's a short-term solution, such as to get through the night while waiting for the dentist's office to open, because after a while the clove oil will blister the skin on the inside of your mouth).
Re: *sigh* Didn't we have this conversation before?!
Re: *sigh* Didn't we have this conversation before?!
<voice tone="petulant">Don' wanna see myself as handicapped. Don' wanna, don' wanna, don' wanna! *pout*</voice>
*sigh*
Workin' on that. It's painful.
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I wish you to feel better... *HUGS*
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As I understand it, I can get anything with enough cash, as long as I don't get caught. Or are you suggesting a web-pharmacy that's lax about checking for prescriptions? (I have not looked into those, only read of their existence.)
Cash is one of the major obstacles. If I had the cash to pay for my various drugs, I could've kept paying my HMO premium (slightly more than the "list price" of my drugs) and had a doctor to prescribe them. Then again, the way Kaiser kept changing the prescription drug benefit on me, I was already getting close to the "can afford either the doctors or the drugs but not both" line even when I still had coverage...
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It's true, you can get anything with cash, but getting stuff on the street is probably very expensive. I was talking about ordering abroad, or taking a vacation to Mexico and coming back stocked :) In many countries, such as Mexico, Greece, etc, the government doesn't get involved in drugs at all, and everything is OTC. If you can contact a reputable pharmacy and place an order, they will ship.
As an American, your order may get opened on its way through Customs. This is rare, simply because of volume issues, but it happens. If the contents are narcotics, you're likely to get arrested, and I think that makes the risks of ordering too high. On the other hand, if the contents are *not* narcotics, then you'll lose your order (they'll ship it back to the pharmacy), but nothing bad will happen to you - you'll simply get a note informing you that your package was returned to sender.
The key is to find a REAL pharmacy. With all the spam you get today advertising the latest pharmacies, it's hard to know who to order from. You have to talk to people who regularly order from overseas and find out who they use and trust. I'm told that many of these places will take your money and send you nothing at all. It also gets tricky if a pharmacy gets TOO popular from US costomers, because then Customs starts looking for packages from whatever return address that pharmacy uses, and seizures happen more often. So it pays to find current information from people who have ordered in the past couple months.
When ordering drugs without a doctor, you have to know what you're doing, so it's important to research not only the pharmacy, but also the drug you're asking for. Personally, I think that any halfway-intelligent person can handle it, but our government doesn't, and there lies your difficulty.
Oh, another thing I thought to mention since my last post: depending on how your pain works, you may find that topical ointments for horses may relieve some of your suffering; these are available OTC in any livestock store. When I was run over by a truck, I found the topical stuff quite effective; but then again, the cause of my pain was very different.
*hugs*
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I wonder if that's connected to my tendency to suspect myself of whining and/or being boring on the subject of illness when my friends assure me that I'm not.
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Some of us -- myself certainly -- were taught as part of our upbringing, "not to complain too much", whether it was ever spelled out in those words or not.This makes it hard to judge when I'm speaking a reasonable amount and/or in a reasonable manner about what's wrong. So ... does that sound like it's connected?
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We could add a backrub and shoulder/arm/handrub to our prospective *Top Hat* and proof viewing visit. I would not mind a bit!
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For me, part of it is that, while I realize that my friends don't mind making allowances, I hate that I sometimes need it, and thus don't like asking for those allowances. Which may lead to me not telling them enough, so they won't decide/offer to give me a break that I haven't already decided I want.
I am getting better at little things, like asking people "can we slow down now?" even when I have been setting the fast pace.
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(At the same time, I feel bad about the idea that I'll be showing up in "needy mode" -- needing some taking care of -- instead of showing up just ready for a fun and relaxing visit. But it makes more sense than waiting and waiting and waiting for a "good day". Waiting for a "good enough to drive there" day is taking too long as it is.)
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If I do it right, the visit will end up fun and relaxing. Screw rehearsals maybe. And Perrine is on her back on the rug she's not allowed to destroy. Fear not. but she's our cat now. When she stretches out that lovely black arm, I melt. And she licks my leg. Just give me notice of your arrival so I can wash my hair.
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'berta
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