08 February, 2008


Gawd a'mighty I miss skating (source of the above). Not the bleeding under the skin so much as the me being able to do it meant I was able to use my legs quite well. I really liked using my legs. And if I have my way, we're oh so far from done.

Regarding the bruise, above: I never realized that it takes certain and special circumstances, like presenting with a bruise as above for a doctor to believe you're in a lot of pain.

And I didn't know it's far from guaranteed that they'll do anything about your pain.

Can you imagine a doctor telling me to my face, after looking at the bruise on my leg (let's say I have it right now):

"It's just a bruise. It'll be gone in a month. Hang in there. Stay positive. You can't let yourself think about it."

"You need to separate the bruise from your self. You can't let it take over."

"The first thing we need to do is worry about your migraines."

"Take your pain [doc makes fist, holds to leg] and just put it right over here [holds fist in mid-air]."

Well, I used to have that bruise and I have fibro now. The bruise hurt a lot, as far as pre-fibro pain goes. Still, it didn't bother me much. I couldn't bend my leg much at the knee or hip, but the pain, as it always used to be for me, was annoying, and not anything that felt... personal. I could always rationalize it away as my self's way of reminding me (in this case) "Hey buddy, leave the freaking leg alone for a while. One, you're too old to be skating. Two, when moving this appendage stops being annoying, you can move this appendage."

Ug. It's late here. Better get to it. If any one of us had a doctor who told us any of the above when we presented with the bruise, we would be at a loss for words at best and swearing like me when I'm drunk at worst (for the record, I don't drink. Mirapex changed my brain chemistry, and now I haven't the slightest taste for beer or wine, when I used to have to pair dinner with the right red or ale).

I should explain "The first thing we need to do is worry about your migraines."

When I began seeing Dr 9 I stressed that pain everywhere is my problem. Because pain everywhere is almost the definition of fibromyalgia. So he said the above.

The worst thing? The migraines are still all he cares about. I could have understood if that was all he cared about the first or second week... But fibro isn't a migraine. And I know he knows this. If I thought about this for too long I would get too angry to continue seeing Dr 9, I'm sure. And so I try to maintain a certain safe ignorance.

He stopped prescribing Vicodin for me to use over the weekend when he found out (because I told him outright, without him asking) that I used the pills, as well as for headache pain, to try to improve my sleep quality and duration.

Goddam it, the bottle said "Take as needed for pain"! He's lucky I know 4 grams of Tylenol is an overdose or I could have taken the whole bottle (20 pills, 750mg Tylenol each, 15 grams Tylenol total) in a day waiting for Godot (read: my pain to go away)!

Dr 9 is fine with me having any and every pain but headache pain. I cannot understand, but only hope the psychologist I saw last week will pull through for me and let Dr 9 know that when I describe my back and limb pain as excruciating in excruciating detail Monday through Thursday I am not doing so because I love the word arrangements: "red hot pokers, six on each side of my spine, in through my back, halfway through the torso," "arms swelled with ache to what feel like Popeye-like proportions," and"My legs always feel as though I just finished sprinting as hard as I could for as long as I possibly could."

These are the descriptions I find most apt. And I repeat them often to Dr 9 in the hope that they will allow him to imagine how I feel enough to allow him to fathom the pain I am in. Because I want --need -- him to exactly comprehend the pain I am in so he will treat it accordingly!

Perhaps what we have here is a failure of adjectives...

Sprain? Ice and Advil. Break? Ice, shot of Demerol, cast, Tylenol-3 to take home. Red-hot motherfucking pokers in your back?! I need you to wear a smile for me every day, and you'll be better before you know it!

Fuck you Patch Adams!

...Crap. I thought I was going to get to the point.

...The bruise above looks like an 8/10. I felt it then, when I had it, as a 5/10. In the state I am in now it would feel like a hand job.

Were I to see a doctor for it, the bruise likely would be treated with high doses of NSAIDS in an attempt to reduce the inflammation, and any patient with a bruise like this wouldn't be fucking condescended to. The doctor would do his/her best to relieve the pain -- treating its cause and the symptom together with Motrin, most likely -- in stark contrast to the standard treatment given to fibromyalgians to relieve their pain.

The following may be the only treatment, or it may be used in conjunction with trigger-point injections, etc.): the doctor runs a catheter straight from his dick/her urethra and makes you drink his/her piss straight from the plastic tube while it's warm. (From a catheter and not directly because, although the good Dr may be a sick, sadistic fuck he/she nevertheless has a fetish for sterility.)

If any pain can be set aside, it's the one I didn't bother going to a doctor for, because it was only a bruise, because it did only hang about for a month, and because it was minor enough that I could take my mind off it.

It is not possible to set aside fibro pain -- the pain I have described above. This pain is forever, just like the fact that diamond commercials will always make me want to throw my TV out a window. And if pain made your biceps feel like balloons inflated with agony-oxide (ug, that wordplay was substandard), could you think about anything else? If your head throbbed every time you moved it, could you ignore that? If your back was so tender to the touch that you could not so much as sit back in a chair, could you whistle Dixie? If someone poured petrol on your thighs and lit them up while you were reading a newspaper, would it take the paper, itself, catching fire to make you aware of the burning on and in your thighs?

If you did not answer yes to all of the above, don't get fibro. Urine and smiles really aren't that great as painkillers.

But wait -- who could forget Lyrica! It won't reduce your pain, but it will make you fat! I think the average person would be lucky to experience a decrease of 2 points out of 10 in their baseline pain, and the weight isn't going to be worth it. Anything more than two points? Enjoy the placebo effect. A hypnotist would be cheaper. Or take a 25 cent Percocet and drop five points.

The only bad thing is you have to keep taking it because you become an addict when you say Percocet three times fast. Or whatever -- moot point. A fibromyalgian always will be in pain, so why would he or she ever not want to take whatever narc works best for him/her?

But you build up a tolerance and then nothing can help you. If I had my druthers I'd be on 80mg of oxycodone per day, starting today. I'd be able to stay at this dose for at lease a year, probably five. By the time I'm eating 160mg of OxyContin twice a day I'll be... For fuck's sake, I'm not going to live that fucking long.

And I can try taking my oxy with naloxone and/or naltrexone, which prevents tolerance in 50 percent of people. If I'm not one of the luck half, I will spend decades increasing my dose of oxy, then spend a year weaning myself off it to reduce my tolerance. It will be a bad year. You want to know what, though? I've already been through 2006 and this far into 2008 -- more than a year of having this killing pain, with nothing to relieve the agony. And I've survived.

For spite.

Trigger-point injections also can be used, but I'm already beginning to find, after less than one month of TPI therapy, of being stuck like a pin cushion -- usually three (rarely two) needles w/ marcaine four times per week -- that they may have hit the wall as far as their utility. Just as we are making progress with my back's trigger points -- I have regained most of the feeling (albeit almost all that feeling is PAIN, any sensation is better than none at all. The way someone being indifferent toward you is worse than them hating you. But not really) in my left leg and foot -- my shoulder and TMJ trigger points are causing me tear-my-teeth-out migraines. Since there's only so much marcaine one can have injected in a 24 hour period, there is only a certain amount of relief I can get per day.

And trigger points fight back. You don't get a nasty reputation as a lifelong disorder unless you're an annoying (at the very least) lifelong disease. I could be an HPV carrier. I won't know unless I get tested, and I probably won't because it doesn't give men symptoms.

So fuck the needles, here's all I need: Klonopin for generalized anxiety disorder, and oxycodone and my own e-stim for fibromyalgia.

I plan to buy the e-stim with the help of my rehabber, Cassatt, so most of it should be paid for by insurance (esp. since I have met my deductible for the year already). And, once I finally move to wherever I'm going next, I hope to find a doctor who will simply write me maintenance scripts for Klonopin and oxy. It should be a lot easier anywhere but here (Lummox, Jesusland).

Right now I take Prozac for my GAD, too, but that's just so I don't have to take as much Klonopin (theoretically. Probably bullshit). Klonopin is in another vilified class of drugs, the benzodiazepines. Therefore, doctors try all they can to keep you off them. Dr Douchebag, my former shrink, reduced my Klonopin dosage from 6mg to 4mg practically as a way of introducing himself when we first met. He earned his nickname immediately.

So no more Prozac. Klonopin has been around longer and is known to be safer. Plus it's a lot cheaper. And I'm on a slew of meds for fibro that, I'm sure, do no good at all (because I don't feel any better at all), but that Dr 9 and all the rest must believe that, if they're good little doctors all year long, or if they say the right incantation over will do what they know oxy does.

The sad -- no -- the disgusting, reprehensible, stomach-churning and unforgivable truth is that I'm on the "fibro" meds I'm on because it makes it look like Dr 9 is doing absolutely everything he can. In fact, he's doing the least possible. He's playing it as safe as he can. The word hasn't reached Jesusland that Ashcroft no longer is attorney general. And when the wagon trains arrive, that word isn't going to make a ripple in the mud puddle.

(Aside: There's a huge illegal drug problem in Jesusland, in part, because people aren't prescribed strong enough or, simply, adequate amounts of legal medications they need for legitimate reasons. Something I'll come back to later is that the way to win the WAR ON DRUGS is to stop fighting it. Maybe then we can let South America have a few democracies...)

OK, so fuck all this shit.

All I need is my own e-stim, Klonopin, and oxy. Insurance: $160/mo. Dr's visit: $25 copay/mo. Stim: paid (will be). Klonopin: about $10/mo. Oxy: about $20/mo.

Total health care costs per month = $215.

Things as they are now are too much, in terms of what it will cost me when I repay my parents, in terms of running around to the doctors (full-time goddam job) and getting barely a goddam return on my goddam investment!

Goddam it it would just be so amazing not to need doctors at all.

...Wow did this post get lost in the woods. I guess this will be my weekends now, without painkillers: complete inability to sleep, total insomnia, writing nonsense but completely immersed in it, obsessed, mind shot, ability to form connections and make associations locked in a trigger point, chain smoking, hurting everywhere, squinting against the light, desperately trying to milk the venom from all 26 letters.



Please see "SEE THE MAGICAL HORSE PUSH THE MAGICAL CART!"... again. I added another anecdote to it. I was editing the post, as I often do when I re-read previous ones, but somehow ended up tacking on a story that didn't really have anything to do with anything. And I got trapped working on it for hours somehow. All the sleep deprivation is definitely getting to me. Please notify me when I have gone completely insane. (Read: crazy enough that it isn't fun or funny any more.)

Whatever I spent all that time on, it's there for your reading pleasure.

...As long as I'm just throwing stuff out here: feedback. Please give any and all you'd care to. Especially re the format of the site. I think I need to tweak things. I want to make this blog as easy to read as possible, of course, yet not boring. If you have any ideas re what I can do, I will be Jack's attentively reading eyes.

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