After a response time delay that successfully separated my stomach lining from its mother-organ, the assistant to Dr. ShoulderMan called last Tuesday evening with a date for surgery. It's gonna be a Rockin' Birthday Eve Event on 23 January.
I was able to refrain from asking her to specify the year.
I was, as they say, fit to be tied from the rush to wait. [I pity the fool who tries to get me into that straitjacket.]
I was, as they say, fit to be tied from the rush to wait. [I pity the fool who tries to get me into that straitjacket.]
My snark is misdirected, also irrelevant. Turns out ShoulderMan's assistant, a nurse who is In Charge Of Everything in that particular workshop, had been out of the office the preceding five days. It was my MDVIP Dr. Go-To-Guy's right hand woman who set me up with expectations...
I'll let it go, this nonsense, let it float up to heaven tied to the end of a wildlife-smothering mylar balloon with bird-garroting ribbons streaming down, landfill fodder.
[Yeah, that's right, I'm crazed by all the balloon releases that people announce -- as tributes to children dead from evil cancer, usually. I guess the balloon signifies childhood and the act of watching attached wishes and sentiments rise to the assumptive vault of heaven is cathartic. My vote goes to... I dunno... quilt panels and living memorials of plants and trees. I'll shut up now.]
I have been brought pretty low of late by things physical, something that is only truly possible by the acquiescence of the mind to things petty. I've caved in, near implosion, from debilitating sweats, for example, that seem to be accompanied by vicious head and neck aches. But mostly, it's been the Return of the Spasm that has had me wailing, alone, behind carefully closed doors.
Okay, that's a lie. I have stopped closing the doors, mostly because every ear in Marlinspike Hall is now entirely immune to the impact of my screams, and never did much react to my cries, anyway, preferring that I announce myself with tasty offerings, via the dinner bell, or with folded clean clothes, after the alarming bark of the dryer timer.
It's not that Fred and La Bonne et Belle Bianca Castafiore don't care; It's more that no one can sustain the level of pity that I require, especially over an extended period of time.
Thank God for blogging, eh?
Even the Feline Remnant has developed a disturbing catty commentary on my painful inertia. Dobby has begun leaping onto my blimpy red oozing legs without the least bit of apology, no hint of embarrassment at my yelp of pain. That glint in his eye had better be a trick of the light.
Personally, I think that with just a tad more dedication and practice, the Indentured Staff, Haddock Middle Management, and Comedic Cling-Ons, all, could whip up sufficient sympathetic fervor -- but that's just me, the hopeless optimist.
The spasms seem to only last about two hours -- that'd be for the one, at most, two, extended sessions of yowling jerkiness per day. The rest of the time, it's a blitzkrieg sort of experience that clearly derives from techniques of guerrilla and modern urban warfare. Rapid, apparently disorganized small strikes meant to demoralize as much as disable. Enmity buried in the ordinary, wide-eyed innocence masking murderous intent.
What? No, I do not think that the characterization of schtuff (above) is excessively self-important and self-pitying. What's wrong with you? Whose blog is it, anyway?
I thought we'd found the formula to defeat CRPS' spasticity, or, at least, the appropriate drug. It's no surprise -- It's Baclofen. Also good for hiccups and alcoholism, not necessarily in that order.
Unfortunately, Baclofen can leave me drooling, which begs the important question: Is life more worth living as a Somnolent Slobberer than as a Total Jerk? We are trying to ignore the clamor of outside voices, those ninnies who feel no shame in telling me what I ought to do ("Just distract yourself, don't over-medicate!"; "Eat a banana!"). There is always one Ninny who wants to blame a low potassium, who hasn't heard that cantaloupes, prunes, and papaya beat out the banana, or that tomato juice with a baked potato will fill the void, as well. Be all that as it may, my potassium is fine.
Où est donc le fil de ma pensée?
Anyway, the Baclofen stopped working, and I cut it back from 80 mg per day to 50-60 mg total, with the result that I no longer spew spittle about The Manor as I twist and twirl and scream.
How is the CRPS, overall?
The Edema Wars continue on, skirmish by skirmish, no real victor in evidence. I had to spend three days straight in bed to bring down the puffy, liquid nature.of my legs and hands. It's no longer an extraneous detail, this edema, for when it is uncontrolled, my legs are in the red zone, but with patches both very cold and very hot. If diuretics, elevation, and rest work their magic and my fingers and ankles reappear? Then the CRPS slips into deep purples, and every appendage is ice cold.
In terms of pain, CRPS rarely lets up. The few moments when I am not in pain really are attributable to either unconsciousness or Blessed Distraction. Unfortunately, pain and sleep are not friendly with one another, so I continue to sleep very little, with the result that pain seems worse, and life, hopeless. It's wonderful, those occasions when I do get good rest, and simply amazing how much less pain I perceive. (The lessons of Reality-as-Perception are popular review topics around here.)
Highest on the list of Blessed Distractions? Books with pace. The Republican presidential nominees (though we fear their entertainment factor may begin a steep decline as that peculiar segment of the electorate begins to weed, in earnest). Suppression of cat hair in my environment. Cooking and baking. Crossword puzzles. Counseling the inpatient addicted carnies during their stay in Haddock Rehab (headquartered in the barn). Short parkour and ballet vids on YouTube. Bed-bopping and wheelchair-whirling to familiar golden oldies, archaeological rock. Checking for updates to Pete's Pustulant Pimple over at PopThatZit. Dobby the Runt, Marmy Fluffy Butt, and Buddy the Freakishly Large Kitten. Fred. La Bonne et Belle Bianca Castafiore. The Crack Whore across the country lane (We sometimes sit and listen to her soliloquize in the middle of the night; Lately, she has addressed one astonishing speech after another to her Ugg boots.).
There's a new category of CRPS misery -- skin. Skin that rips and tears, bleeds and blisters, openly weeps and lightly leaks. Skin that burns, skin that, once broken, refuses to heal. I suppose my new friend, The Fistula, falls in this category. The Fistula had stopped leaking and I was full of hope that it would go away, but then I mopped all 27 of The Manor's medieval and early renaissance kitchens last week... and wouldn't you know, the hole in my upper arm turned bright red and produced stringy yellow pus. The idea that this thing has tunneled all the way from my shoulder prosthesis is so... gross. *Bleck*! *Ack*-*Ack*
My right leg is particularly prone to skin weirdness, as well as injury, upon which skin weirdness thrives. Between cat talon punctures, dropped laptops, and doorway collisions, the leg is pocked with holes and eruptions, and regularly bathed in the terrible brine of lymphatic fluid. It can be depressing.
Prior to my last visit with MDVIP Dr. Go-To-Guy, I decided to do some heavy maintenance of that leg, and took a brush to it, thinking that maybe the crud and crap could just be scrubbed away. (Very sleepwalking Lady Macbeth.) In the shower, perched on the plastic chair [that has a screw poking through its seat right into mine own seat, ouch!], I administered a brief flurry of boar bristles. Never again. I still burst into spontaneous fits of bleeding if I leave that leg haphazardly upright, or should I remove the Hello Kitty Band-Aids. In addition to what can only be described as holes, new pores on steroids, there are shiny, raised, red whorls.
My hands primarily burn, though there are now stabbing pains on the outside of the palm and up the side of the pinky finger, with the foremost complaint-worthy problem being edema and slowness to react, clumsiness. This puts a real crimp in my legendary culinary knife skills.
We've been keeping Ruby the Honda CRV defrosted, de-iced, juiced up, and just generally ready because the infection in my left shoulder is raging, and there have been a few afternoons when it seemed like I was becoming septic, or, at least, loopy. I sometimes get hit with chills and sweats simultaneously, cannot get warm, and wrap myself up like a papoose destined for frozen tundra.
So that's the state of things. My goal is simply to get to January 23 in as great a condition as possible, with a mind prepared for another long haul of seek-and-destroy. ShoulderMan will team up with another local folk hero, Infectious Disease Dood, and together they'll organize the antibiotic or antifungal (ewww) attack during the post-op period with the spacer in place. If they are successful, ShoulderMan will be able to regift me with a shoulder (most likely a "reverse" prosthesis) in about three to four months time.
I am so lucky to be in their good hands.
Now... to get there. and with sanity intact!
The spasms seem to only last about two hours -- that'd be for the one, at most, two, extended sessions of yowling jerkiness per day. The rest of the time, it's a blitzkrieg sort of experience that clearly derives from techniques of guerrilla and modern urban warfare. Rapid, apparently disorganized small strikes meant to demoralize as much as disable. Enmity buried in the ordinary, wide-eyed innocence masking murderous intent.
What? No, I do not think that the characterization of schtuff (above) is excessively self-important and self-pitying. What's wrong with you? Whose blog is it, anyway?
I thought we'd found the formula to defeat CRPS' spasticity, or, at least, the appropriate drug. It's no surprise -- It's Baclofen. Also good for hiccups and alcoholism, not necessarily in that order.
Unfortunately, Baclofen can leave me drooling, which begs the important question: Is life more worth living as a Somnolent Slobberer than as a Total Jerk? We are trying to ignore the clamor of outside voices, those ninnies who feel no shame in telling me what I ought to do ("Just distract yourself, don't over-medicate!"; "Eat a banana!"). There is always one Ninny who wants to blame a low potassium, who hasn't heard that cantaloupes, prunes, and papaya beat out the banana, or that tomato juice with a baked potato will fill the void, as well. Be all that as it may, my potassium is fine.
Où est donc le fil de ma pensée?
Anyway, the Baclofen stopped working, and I cut it back from 80 mg per day to 50-60 mg total, with the result that I no longer spew spittle about The Manor as I twist and twirl and scream.
How is the CRPS, overall?
The Edema Wars continue on, skirmish by skirmish, no real victor in evidence. I had to spend three days straight in bed to bring down the puffy, liquid nature.of my legs and hands. It's no longer an extraneous detail, this edema, for when it is uncontrolled, my legs are in the red zone, but with patches both very cold and very hot. If diuretics, elevation, and rest work their magic and my fingers and ankles reappear? Then the CRPS slips into deep purples, and every appendage is ice cold.
In terms of pain, CRPS rarely lets up. The few moments when I am not in pain really are attributable to either unconsciousness or Blessed Distraction. Unfortunately, pain and sleep are not friendly with one another, so I continue to sleep very little, with the result that pain seems worse, and life, hopeless. It's wonderful, those occasions when I do get good rest, and simply amazing how much less pain I perceive. (The lessons of Reality-as-Perception are popular review topics around here.)
Highest on the list of Blessed Distractions? Books with pace. The Republican presidential nominees (though we fear their entertainment factor may begin a steep decline as that peculiar segment of the electorate begins to weed, in earnest). Suppression of cat hair in my environment. Cooking and baking. Crossword puzzles. Counseling the inpatient addicted carnies during their stay in Haddock Rehab (headquartered in the barn). Short parkour and ballet vids on YouTube. Bed-bopping and wheelchair-whirling to familiar golden oldies, archaeological rock. Checking for updates to Pete's Pustulant Pimple over at PopThatZit. Dobby the Runt, Marmy Fluffy Butt, and Buddy the Freakishly Large Kitten. Fred. La Bonne et Belle Bianca Castafiore. The Crack Whore across the country lane (We sometimes sit and listen to her soliloquize in the middle of the night; Lately, she has addressed one astonishing speech after another to her Ugg boots.).
There's a new category of CRPS misery -- skin. Skin that rips and tears, bleeds and blisters, openly weeps and lightly leaks. Skin that burns, skin that, once broken, refuses to heal. I suppose my new friend, The Fistula, falls in this category. The Fistula had stopped leaking and I was full of hope that it would go away, but then I mopped all 27 of The Manor's medieval and early renaissance kitchens last week... and wouldn't you know, the hole in my upper arm turned bright red and produced stringy yellow pus. The idea that this thing has tunneled all the way from my shoulder prosthesis is so... gross. *Bleck*! *Ack*-*Ack*
My right leg is particularly prone to skin weirdness, as well as injury, upon which skin weirdness thrives. Between cat talon punctures, dropped laptops, and doorway collisions, the leg is pocked with holes and eruptions, and regularly bathed in the terrible brine of lymphatic fluid. It can be depressing.
Prior to my last visit with MDVIP Dr. Go-To-Guy, I decided to do some heavy maintenance of that leg, and took a brush to it, thinking that maybe the crud and crap could just be scrubbed away. (Very sleepwalking Lady Macbeth.) In the shower, perched on the plastic chair [that has a screw poking through its seat right into mine own seat, ouch!], I administered a brief flurry of boar bristles. Never again. I still burst into spontaneous fits of bleeding if I leave that leg haphazardly upright, or should I remove the Hello Kitty Band-Aids. In addition to what can only be described as holes, new pores on steroids, there are shiny, raised, red whorls.
My hands primarily burn, though there are now stabbing pains on the outside of the palm and up the side of the pinky finger, with the foremost complaint-worthy problem being edema and slowness to react, clumsiness. This puts a real crimp in my legendary culinary knife skills.
We've been keeping Ruby the Honda CRV defrosted, de-iced, juiced up, and just generally ready because the infection in my left shoulder is raging, and there have been a few afternoons when it seemed like I was becoming septic, or, at least, loopy. I sometimes get hit with chills and sweats simultaneously, cannot get warm, and wrap myself up like a papoose destined for frozen tundra.
So that's the state of things. My goal is simply to get to January 23 in as great a condition as possible, with a mind prepared for another long haul of seek-and-destroy. ShoulderMan will team up with another local folk hero, Infectious Disease Dood, and together they'll organize the antibiotic or antifungal (ewww) attack during the post-op period with the spacer in place. If they are successful, ShoulderMan will be able to regift me with a shoulder (most likely a "reverse" prosthesis) in about three to four months time.
I am so lucky to be in their good hands.
Now... to get there. and with sanity intact!
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