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.

gratuitous east coker: wanna know what i'm doing?

want to know what i am doing... right now, this very minute?

this:

addendum:  mdvip go-to-guy added clonazepam to my drug arsenal but it's too soon to say whether it's helping. yesterday (sunday) was the first full dose day.  due to constant clinching/declenching, my hips are sources of agony, and my knees, totally unreliable, and reluctant to bend. hard as it is for *me* to understand, i cannot expect for you to get it... but the cries and curses are a surprise -- the pain, a shock.

note that even dear dobby and dim buddy no longer respond to my whimpers. why should they? do i whine and give them a treat?  no.  do i yelp and offer a wunnerful wunnerful ear scratch?  no.  in all terms of feline / human interchange, i am a big nada zero zilch, the big nil.




So here I am, in the middle way, having had twenty years—

Twenty years largely wasted, the years of l'entre deux guerres
Trying to learn to use words, and every attempt 
Is a wholly new start, and a different kind of failure
Because one has only learnt to get the better of words
For the thing one no longer has to say, or the way in which
One is no longer disposed to say it. And so each venture
Is a new beginning, a raid on the inarticulate
With shabby equipment always deteriorating
In the general mess of imprecision of feeling,
Undisciplined squads of emotion. And what there is to conquer
By strength and submission, has already been discovered
Once or twice, or several times, by men whom one cannot hope
To emulate—but there is no competition—
There is only the fight to recover what has been lost
And found and lost again and again: and now, under conditions
That seem unpropitious. But perhaps neither gain nor loss.
For us, there is only the trying. The rest is not our business.

  Home is where one starts from. As we grow older
The world becomes stranger, the pattern more complicated
Of dead and living. Not the intense moment 
Isolated, with no before and after,
But a lifetime burning in every moment
And not the lifetime of one man only
But of old stones that cannot be deciphered.
There is a time for the evening under starlight,
A time for the evening under lamplight
(The evening with the photograph album).
Love is most nearly itself
When here and now cease to matter.

Old men ought to be explorers
Here and there does not matter
We must be still and still moving
Into another intensity
For a further union, a deeper communion
Through the dark cold and empty desolation,
The wave cry, the wind cry, the vast waters
Of the petrel and the porpoise. In my end is my beginning.
 

Just That Elemental

I've increased some of my medications in an effort to stop the spasms.  These demonic twitches have been starting up three times a day, lasting anywhere from just thirty minutes to an interminable three hours.  Their three instances vary, but the last few days have seen a pretty early first onset, around 11 am, with the second visit in the late afternoon, and the unforgiving third beginning almost promptly at 8:30 pm.  What has prompted me to resort to grabbing more pills, though, instead of white-knuckling my way through, are the changes in frequency and in the sly adjustments my enemy has made in how it conducts its wily, ugly, piece-of-crap self.

I'd never given much thought to how much time was elapsing between spasms, but when my screams seemed to be piling up, one shriek right on top of the echo of the last yell?  I decided to be oh-so-crafty, too, and count off the intervals.  My first attempt at counting, I made sure to follow the tenets of "one one-thousand, two one-thousand," calm, steady, and every time, I got to "eighteen one-thousand" before I had to scream.  Even when I felt stubborn and resolved not to make a sound when I hit "eighteen one-thousand," I had no ability -- none -- to stop that disturbing vocalization.  The second go-round with counting off the time?  I couldn't even maintain the pattern, that comforting rhythm, because the short-circuiting area of my brain decided on irregular firing, on pulses of 18, then twenty-two, then 12.  My point?  That is a very short amount of time between onslaughts;  There is no time for recovery.  This is new.

This is horrible.  I understand the meaning now of "I wouldn't wish it on my worst enemy." Okay, well, that is something of a sad confession.  Until this, until now, I had little problem wishing stuff upon my enemies, and I admit it.

A doctor told me recently that he would kill himself if he had CRPS.  I assume he meant CRPS as I have it  -- bad and unbeatable.  What else could I assume, since I was the only "CRPS referent" in the vicinity of the conversation, a conversation being held aloft by just three human tongues?  What is sad is not his comment (it's more in the category of neutral, a rhetorical ecru) but my complete lack of shock, the absence of any surprise.  "What? My God!  Why ever would you say such a thing?" has faded away and left me with "What?  What?  Oh, that?"


I can't kill myself right now because Fred would be lost, financially.  I promised, at some point, to take care of him -- and what I cannot explain here, though I assure you it is true, is how Fred has given up more than you can imagine, and that he did it for me, and that I owe him, as is said, big time.  He has not been able to travel certain paths, plan for life as he would have.

I have to keep my promises.

Yeah, so.  I don't know how I got to talking about *that*.  Good grief.

The other change in the current Shift Toward Intolerable?  The center for these bits of seizure has shifted so that I would swear (and bet all of Fred's inheritance, no matter the odds) my hips were grinding themselves to bony bits.  Actually, I have a prosthesis for a right hip, and the left hip is pinned. The right one is okay, most of the time.  I can tell there is activity on the right by the degree of generalized soreness.  It's my best major joint, that right hip!  Yay, right hip!

But the left hip, despite still having its original parts, is the Devil's Spawn.

Oh, I give up.  There's no explaining it, and why should there be?

The amount of Baclofen required to just get through the day is not enough to stop the pain.  Somehow, my mind is supposed to keep that knowledge front and center, available to reason.  As in:  Don't take more just because the pain continues, the screaming continues, the smashing and grinding continue.  It won't help and it could kill.  It's the same with the other meds -- with any medication, any drug.  It's imperative that I remember that in the middle of all the awfulness.

I think, every day, several times every day, how understandable it would be were I to forget.

On the way to the orthopedic surgeon's office on Thursday, I had just escaped the first of the three spasm periods for the day and hadn't had an opportunity to really process the night -- I woke myself with my own screams.  He was driving.  I was riding.  I thought we were okay.  I began telling him about the night, about the pain. He stopped me, said I overwhelm him.

All I could do then was cry.

Because -- of course, I overwhelm him.  Who would not be overwhelmed?  Who would not feel trapped?  Who would not be sick of pain, talk of pain, the sound of pain, its look?

But what makes me angry, besides being told, basically, to shut up, is that he thinks he knows what I am dealing with -- and he does not.  He thinks that if I feel it, I blurt it out -- I blurt it out all over him, and rush to do so -- and feel better afterward.  As if it were a beneficial purge.  Except that I don't.  I don't tell him most things, and I surely don't share with him most pains.

And it has been many years since I have felt better for having shared with him.

He is controlling me, in many ways, and I resent each of them.  I resent him.

He passes himself off as a "caretaker."

He does not.  He does not take care.  I tell you -- he could not discern another person's needs if you paid him to -- and, ha!  I do!  And he doesn't.  And I don't deserve this.  I have to keep living because of him and his inability to care for himself, never mind anyone else.

All of this is true, but all of this is nothing but me, unabashed, unfiltered ego, the moi at the center of the universe -- it lacks the grace of the angels, it lacks the child that shines from Fred, it doesn't pray for what the congregants are pleading.

It just freaking overwhelms.

I'm going to be twitching for a while yet tonight, and then later again. I need to wash and change my clothes, do the dishes, write my mother a letter, my brother Grader Boob an email.  Wave at the moon that is the same moon shining over the Grand Canyon, and over my brilliant brother Tumbleweed (and friends).  We got a postcard from him today. I swear, the boy is having a good time!

I wish I could be among those pilgrims.

Fred is asleep right now, curled up on the sofa.  He looked cold so I covered him with a blanket.
We need things just that elemental.

The Cash Cow Blues

Dear Readers:

It's Sunday, and I'm engaged in quiet rebellion.  In lieu of Priests for Equality's The Inclusive Bible: The First Egalitarian Translation, I just read Wallace Steven's Sunday Morning.  "Complacencies of the peignoir" and so on, an elegant paganism.  Today, the poem, like coffee and oranges, is compensation enough for imagined losses; The general flight of generic birds provides enough permanence to sustain the necessary fiction.

Oops.  Still there?

Typing is difficult.  Using the shift key, inserting accented vowels, fending off cat paws -- all these things, though, force me to use my left hand, now ice cold, withered, and tad bit purplish. In this precise moment, I am having no spasm, anywhere.  Were my head clear of fuzz, this instant could be categorized as phenomenal.

Since, however, my brain is encased in spidery filament, I will just do what I set out to do -- cobble together a few of the details that led to my recent downfall, in particular, the role of honesty and fear of litigation in the practice of medicine.  Let's be very particular and insist on the specificity of January 31, 2012, the day before I ended up in ICU.

It wasn't the surgery that occupied me.  It wasn't pain, even, or at least not my normal pain.  It was all about those bleeping spasms, those crushing and twisting events that put my experience of CRPS on a new level of fear.  Terror.

If you've been a Dear Reader for any length of time, you know that I'm defenseless against this permutation of CRPS.  The only measure deemed effective against this dystonia/movement disorder involves the drug baclofen.  People with CRPS and severe spasm usually cannot get sufficient amounts of baclofen without depressing respirations, etc., so the party line is that administration of baclofen via a catheter inserted into the spine is the best option.  Large doses can be given without the accumulation of deadly side effects.  Because I currently have infection assumed to be caused by implanted materials, and because my spine is riddled with microfractures due to osteonecrosis, the intrathecal approach isn't appropriate.

Which leaves me you know where and without a paddle.

I am a cash cow for Dr. PainManagement Dude.  I haven't seen him in 2-3 years.  Instead, I see one of his Nurse Practitioners or Physician Assistants for "pharmaceutical management."  Most of that time, I saw A, a wonderful NP who was mostly up to date on trends within CRPS treatments and research.  She pointed me in the direction of the sub-anesthetic ketamine experiment last year.  She left right after that, and was replaced by M, who left, and was replaced by another NP whom I had only seen once.  

Dr. PainManagement Dude told me early on in our relationship that there was no hope for me, no treatments left to try.  The more I tried, the more disgusted he seemed to be.  Finally, I learned to just show up monthly, grovel, pay my bills, and stifle any stray flares of optimism.

But on 31 January, I needed his help.  I had used and overused the brains and opinions of my very smart group of docs, and most everyone seemed to think that PainManagement Dude might hold the key to successful use of baclofen.

So I wrote him:

Dr. PainManagement Dude --

Hi -- Hope you are well!

I had my left shoulder prosthesis removed and a temporary antibiotic-laced spacer put in -- last week, by Dr. ShoulderMan at The Lone Alp Hospital (in southern Tête de Hergé).  This is a battle we've been waging, without much success, for three+ years now.  I am getting awesome care by everyone -- your office, Dr. MDVIP Go-to-Guy, and, of course, Dr. ShoulderMan.

In the course of all this, however, CRPS kept getting worse.  I think I have tried everything available in this area, and traveling just seems impossible now.  There remains a chance that I will give it one more go, if this shoulder infection problem gets solved, with Dr. Scwartzman at Drexel, but it will be years from now, based on his schedule/demand.  My hope has been that if the infection/inflammation could be "cured," then my pain levels would go down, not just in my arms, but overall. I still think that may happen.

It has taken me this long to understand how truly difficult CRPS is to treat.  I am slow on the uptake!

These are the things I need to ask you about.  Please excuse the more basic ones.  I am avoiding the phone because the spasm/pain situation makes it a waste of time for retaining any information [also, I tend to scream without warning]:

Which PA/NP is treating me?  I was so used to A, then adjusted to M, and now cannot remember whom I saw last, cannot find my paperwork. She was great, but who was she!?  [I can see now that this reads as a criticism, but I swear, Dear Readers, that I simply needed a name.]

I need some flexibility in scheduling with your office.  You all have been very accommodating, but I know a new "provider" may not be comfortable starting off that way.  Fred is having to take me to Dr. InfectiousDiseaseDude's office 2-3 times a week for blood work and dressing changes, on top of regular "stuff," plus he administers the Vancomycin by PICC line.  We're exhausted.  Anything anyone can do to reduce stress will be appreciated.  Every Monday and Thursday, we will have to be out and about until roughly 11 am, so is there someone we could see at your office between 12:45 and 2:00 pm?  If not, we'll figure it out...

The medication situation:  I have enough methadone (10 mg tablets, though, that I break in half) and endocet for about 3 weeks, enough amitriptyline for a few months, but whether I've enough baclofen is anyone's guess, as my need is rapidly changing. Dr. MDVIP Go-to-Guy has been prescribing it through my mail order pharmacy, Medco.  I have had to take more endocet and baclofen than usual in the past two weeks but am planning to taper back over the coming week. [I am annoyingly honest with my health care providers.  A few appreciate it;  Most cringe.]

SPASMS: In CRPS, I don't know what doctors call them -- spasms, cramps, dystonia, WHATEVER! I cannot tolerate them at their current intensity and frequency. You probably hear this all the time, but I did not know it could get like this. This is a whole new animal... Right now, I am at my "calmest" point in a week, and the pain with each spasm -- now in my hands (they flinch, involuntarily[?], about every 20 seconds) -- shoots up to 8-9/10, then down to my usual 5-7/10. Both legs can be involved at the same time, to the extent that my foot is pulled toward my head, my hamstring is pulled in a different direction, and now even my left hip joint is involved. The last round of that began at 8 pm and did not decrease enough to make any difference until around 9 this morning.  They spasmed throughout the day.  I had what seems to me a lot of baclofen already, buteven that, obviously, did not work.  I want to take as little as is necessary to relieve this horrid pain.   I think I will need both a short term and a long term solution, unfortunately.  Intrathecal baclofen is the usual long term approach but that probably isn't a good idea in someone already fighting an infection, plus... I just don't want it...

 

I am sure the correct response is to tell me to "come in to the office." I hope there is an alternative.

Thank you so much for "fielding" this email! I am trying to stay organized but it's hard.  Please tell me what is not clear and I will try to answer more succinctly.

I did not receive a reply from Dr. PainManagement Dude.  Instead, I got this:

Hi XXXXXXXXXX,

I was the nurse practitioner you saw at your last visit. It was good to meet you!
Please discuss with Dr MDVIP Go-to-Guy the amount of baclofen you can take safely and what else can be done to treat the spasms.
We require everyone on narcotic pain medications to come visit monthly for medication refills, so please make an appointment before you run out of medication. I have asked B from our office to call you about an appointment.
Have A Good Week,


ButterMouth, ANP

"Have a good week"!?  If only one of us had known how the week/month was about to unfold...
Proof of my capacity to "zip it," evidence of my claims of concision?  Here's my response to ButterMouth:

Hi ButterMouth,


It was good to meet you, too.


Thanks for your response.


XXXXXXXXXX

To any medicos out there:  Please allow your patients to be honest in their communications with you.  Please don't see legal issues under every rock, something sinister behind every inquiry.  Easy for me to say, I know, but then, whose blog is it, anyway?

When a person begs for help, please help.

February 1, 2012 proved to be a "Terrible, Horrible, No Good, Very Bad Day," in small part due to PainManagement Dude's studied non-responsiveness.  Shoot, he probably could not have changed the outcome... but I might have felt less abandoned, safer, might have had a little hope.

What worries him so about having a medical opinion, a suggestion, a possible way to proceed? Did he fear that his response might be posted on my blog?

Ridiculous!

It's gonna be a Rockin' Birthday Eve

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.]

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!

Intrathecal baclofen for CRPS-related dystonia

Pain. 2009 Feb 18. [Epub ahead of print]

Intrathecal baclofen for dystonia of complex regional pain syndrome.

Rijn MA, Munts AG, Marinus J, Voormolen JH, de Boer KS, Teepe-Twiss IM, van Dasselaar NT, Delhaas EM, van Hilten JJ.

Department of Neurology, Leiden University Medical Center, P.O. Box 9600, 2300 RC Leiden, The Netherlands.

Dystonia in complex regional pain syndrome (CRPS) responds poorly to treatment. Intrathecal baclofen (ITB) may improve this type of dystonia, but information on its efficacy and safety is limited. A single-blind, placebo-run-in, dose-escalation study was carried out in 42 CRPS patients to evaluate whether dystonia responds to ITB. Thirty-six of the 38 patients, who met the responder criteria received a pump for continuous ITB administration, and were followed up for 12 months to assess long-term efficacy and safety (open-label study). Primary outcome measures were global dystonia severity (both studies) and dystonia-related functional limitations (open-label study). The dose-escalation study showed a dose-effect of baclofen on dystonia severity in 31 patients in doses up to 450mug/day. One patient did not respond to treatment in the dose-escalation study and three patients dropped out. Thirty-six patients entered the open-label study. Intention-to-treat analysis revealed a substantial improvement in patient and assessor-rated dystonia scores, pain, disability and quality-of-life (Qol) at 12 months. The response in the dose-escalation study did not predict the response to ITB in the open-label study. Eighty-nine adverse events occurred in 26 patients and were related to baclofen (n=19), pump/catheter system defects (n=52), or could not be specified (n=18). The pump was explanted in six patients during the follow-up phase. Dystonia, pain, disability and Qol all improved on ITB and remained efficacious over a period of one year. However, ITB is associated with a high complication rate in this patient group, and methods to improve patient selection and catheter-pump integrity are warranted.