Friday, May 18, 2012
Alacrity of Crab and No Fear of Death
Set your sound system to mute. I was thinking more of what Holly Near once looked like, on the steps of Sproul Plaza, than of the song, which I now realize that I hate. It's a facile, good-for-nothing song. And I'm just lazy enough not to want to spend five minutes reformatting this award-winning little vid so as to get rid of it.
Plus, I have Cajun Blend Trail Mix seasoning stuck all over my fingertips, making them sticky, orange, and tangy. I don't want to touch too much stuff, leaving cajun traces every which where.
Why don't I just wash my hands, spend the few minutes fixing the sound, and apologize to Holy Holly Near? Well, who died and left you in charge?
There has been something potentially wonderful going on. It's called clonazepam, and depending upon whom you ask, it is used to treat dystonia, anxiety, seizures, panic attacks, and insatiable lusting after good garlicky pickle juice. I began noticing it being mentioned in articles about CRPS spasms/dystonia, mostly articles originating in the U.K. Being at that "well, why the hell not?" stage of life, I emailed my good and faithful MDVIP physician, asking whether he thought it worth a try. In lieu of a discussion, he called in a prescription to the Lone Alp Apothecary.
The first change of note was blubbery. Babalushka bablubbery. Sleeping as if it were le dernier cri and all the babalushka bablubbery surrounding it were refined messes worthy of literary awards. I decided this was how I wished to die -- asleep, or contemplating sleep. I kept all my other meds the same -- maxed out on Baclofen, even adding the odd tizanidine to the usual pain meds of methadone and endocet. "Did I want to die?" you unsufferables are muttering, shaking your locks to-and-fro.
Why, yes, you unsufferables (and mutterers, too) -- I did hope to traipse off to death land. I couldn't take it anymore. The time awake was spent in rocking, tendon-splitting spasm, uncontrollable sobs that bored even the Feline Remnant. The time asleep ordered itself around oneiric alphabetizing of what I could expect upon waking. And upon waking? Well, I was made to know that I was... "overwhelming."
I put a lot of hope in an appointment chez Dr. PainManagementDood. I know, I am stupid. My previous appointment, to my recollection, had ended with the promise that the next one would entail a shift away from methadone, which, frankly, frightens me, and toward a better management of my baseline pain. But -- AGAIN -- I was met with a Nurse Practitioner's big round eyeballs, and a "Uh, did we say we were going to do that? Did you tell us your pain was out of control? Can we take that up next month?" I went home and vomited
So slipping away into babalushka bablubbery was a smiling, gently smiling thing, though lonely, and scary.
Then my spasms decreased in frequency. Not in severity, ugliness, painfulness, no -- just stopped happening as much, as often. I pushed the dosage of the clonazepam to the most recommended by good MDVIP go-to-guy, and cut back some on the baclofen.
I started to be able to predict the babalushka bablubbery, so that a warm quilt could be at the ready, other important maintenance drugs could be taken on schedule, the room could be darkened, there was a semblance of... intent. Occasionally, I risked thinking beyond the impending babalushka bablubbery, and plan to cook dinner for Fred, myself, and Bianca, because if I had to listen to that god-forsaken *ding* of the microwave one more time, I was going to revive Mengele's most promising experiments. The secret lore of the Haddock clan includes the updated names and addresses of Auschwitz twins. Sometimes, Reader, looking the good captain Archibald in the eye is a soul-sucking trauma.
It's been about a week now, I think. I am not sure, at all. I am not sure what day it is, not sure whether I believe the sources that yearn to ease my mind about it. Is it 2:07 PM 5/18/2012 or is that just what you all want me to believe? Hmm? My pain level is very, very, very high -- I'd rank it around a nine, and it's distracting, it's evil. I know I took my breakthrough pain medication and so cannot have more until roughly 7 PM.
The spasms are lasting only about 3-4 hours per day. That is PER DAY. TOTAL. I am afraid to type it, afraid to publish it, afraid to believe it.
So God bless MDVIP Go-To-Guy, God bless him as he has never blessed a soul before. You see, he believed me, he believed my desperation, he found merit, apparently, in my suggestion, and above all, Sweet Reader, he tried.
He even heard me when I said I'd had it with Dr. PainManagementDood, and suggested another doctor, by name. Unfortunately, that doctor has gone the route of ka-ching::ka-ching procedure land, and so only treats CRPS with sympathetic and regional blocks. Oh, and SCS -- which would fly in the face of my recent decision to rip from my body all extraneous implants.
Here is the kicker, though: when he found that his referral was actually no referral at all, MDVIP Go-To-Guy offered to take over my pain management himself. I probably should have said "Yes, and yay!" but a smarter self intervened to thank him but decline. It's beyond unfair, to dump everything on him. The current climate of looking over prescriber's shoulders and second-guessing their pain management decisions is not what I want to wish on him -- though there is little doubt my treatment would raise more than an odd and poorly tweezed eyebrow.
But here is a "Yay" for the man, anyway, because the combination of tizanidine, baclofen, endocet, methadone, and CLONAZEPAM seem to have quelled the spasticity enough that I must reconsider life.
Um, it also seems to have triggered something that I will call "automatic eating," which results in finding half empty yogurt containers in bed, and bowls of popcorn with kernels all hither, all yon.
There are increasing deficits, too, and these are the reasons for cutting back on dosages in the hope of finding a happy medium. Legs not working too well, hands not grabbing with the alacrity of crabs. An absolute absence of the fear of death.
Someone asked for a visual update of hands and feet, so I pieced together the video below. Again, I had fun with favorite things in juxtaposition.
Which brings me back to Holly Near and her glorious red hair back in the mid-eighties, being all troubleshooting troubadour-ish on Sproul Plaza. But really, what a shit of a song.
You know it and I know it -- were we really singing for our lives, it wouldn't be such a whine. It'd be glorious. It'd be red hair glinting in a setting sun.