Wednesday, March 7, 2012

Have you seen my grabber?

Good morning, Dear Readers.

Dobby is glaring at me, having been dumped on the floor in the panic of my waking.  I do not normally use alarm clocks, so when the radio screamed itself into existence, pillows, books, remotes, telephones, an empty can of mixed nuts (with sea salt), and a pet hair roller pickup thingy all went flying.  The great news is that I seem to have much improved range of motion in that left arm, judging by how far I threw the grabber.

And, as anyone with a love, or need, of a grabber/reacher knows, the first thing one needs upon tossing one's grabber... is a grabber.

I haven't celebrated my birthday yet.  We had anticipated simply postponing the traditionally wild affair a week or so, but our plans were superceded by rude reality.  I did, however, put together a dreamy Wish List of things any girl would want, using a dog-eared, glossy medical supply catalog as my Wish Book.  Chief among my desires?  New grabbers.

Stashed in corners, hanging from bookcases, I have a good number of these things already.  However, each has its peculiarities, and most have been modified. One won't pick up paper, or do any work requiring a decent pinch action.  One is inexplicably marvelous for picking up tiny white pills.  Another has been run over so many times that its only remaining use is as a kind of hook to retrieve heavy, wet laundry from the washing machine -- or as some sort of weapon, I suppose.

By the rapid clenching and unclenching of his jaw muscles, I can attest that one of Fred's least favorite things to hear is:  Would you hand me my grabber?  There are variations that may actually be worse, like:  Have you seen my grabber?


Several times a day, I can be spotted trying to pry a grabber off the floor with the assistance of salad tongs, a cane or mop handle, or -- my favorite, and a sign of immense frustration -- by carefully depressing one end of the thing with a wheelchair wheel, thereby leveraging the other into the air enough that it can be... grabbed.  [My understanding of lever-fulcrum dynamics may not be the standard understanding.]

After politely declining to purchase a state-of-the-art pink bedside commode, and shaking his head at the idea of a fancy new whirligig mattress -- a motor-powered pinwheel construction that takes being bedbound into new realms of possibility, Fred said he would order some new grabbers for my birthday present.

Having opened with the image of Dobby flying through the air, it's worth noting that each of the Feline Remnant has a special relationship with the grabbers.  Buddy the Freakishly Large Kitten is determined to consume one, and his penchant for a good chew is evident on each of the gimp utensils.  Marmy Fluffy Butt becomes scarily amorous in their presence, rubbing her cheeks against the handles, purring, all squinty-eyed.  Dobby sees them as foes, and challengers to the strict hierarchy of The Manor, according to which, he, Dobby, is always Number Two.

Yesterday, I saw the good MDVIP Go-To-Guy doctor, a trip which left me exhausted, and this morning we are headed out to the infectious disease dude's place, hopefully to have good news about last week's labs, and to have this PICC line REMOVED!  Pain is a bother, but it is coming more in waves now, so that's not so bad.  The wound is healing nicely under my careful ministrations [hoot!], no more pseudomonas that I can see, and none that I can whiff, either.  I continue to walk from bed to bathroom, scuffing and scuffling along.  Can a rousing soft-shoe routine be far behind?

Have you seen my grabber?


Tuesday, March 6, 2012

Miserable Manure: More Ochoa



There has been a recent uptick in searches on this blog for one Dr. Jose Ochoa, traditionally referenced as "a turd."   In the past, when this has occurred, I figured Ochoa was engaged in some lonely, late-night hunt for himself.  We've all been there.

My emails, mostly impersonal notices of sales and political opinions, have piled up, mostly unread, during these surgeries and hospitalizations.  I've returned to blogging but unhappily, as what I most want to write about involves french-kissing forbidden loves.

Workhorse that I am, though, and desperate for undrugged sleep, I began going through the electronic backlog a few hours ago, with Buddy the Freakishly Large Kitten perched daintily on my lap, his bigass* claws inches from my PICC line. [Woo hoo!  Who do you know who is getting her last intravenous dose of daptomycin tonight at 18:00?  Who is having that same tape-gummy line removed tomorrow morning?  Yay!]

*My Google Spell Master/Composition Editor strongly suggests that "bigass" be replaced by "bigamous."

I subscribe to several feeds from MedWorm, "the Internet's medical router," thereby hoping to remain current about CRPS research publications.  Lately, there's not been much, and what there has been is sufficiently specialized that I was quite lost trying to understand it.  But when I opened MedWorm mail from March 1, 2012, I found something accessible and set out to do some reading.

In the Journal of Hand Surgery, a conversation about CRPS has popped up, in reaction to what seems a solid piece of work, though quite dated in some of its suppositions, published in Volume 36, Issue 9, Pages 1553-1562, back in September 2011.  I do wish researchers in the specialized surgical fields, especially, would avail themselves of the new work that largely debunks the insistence on all things "sympathetic," including rote prescription of sympatholytic drugs and sympathetic blocks -- for all that "SMP."

That I might have a problem with the proposal of surgery as "an appropriate alternative," well, I think that's understandable but concede that maybe it's a personal problem...

Here is the abstract of that article:

Complex Regional Pain Syndrome of the Upper Extremity

Ryan W. Patterson, MD, MPH, Zhongyu Li, MD, PhD, Beth P. Smith, PhD, Thomas L. Smith, PhD, L. Andrew Koman, MD
Department of Orthopaedic Surgery, Wake Forest University School of Medicine, Winston-Salem, NC

The diagnosis and management of complex regional pain syndrome is often challenging. Early diagnosis and intervention improve outcomes in most patients; however, some patients will progress regardless of intervention. Multidisciplinary management facilitates care in complex cases. The onset of signs and symptoms may be obvious or insidious; temporal delay is a frequent occurrence. Difficulty sleeping, pain unresponsive to narcotics, swelling, stiffness, and hypersensitivity are harbingers of onset. Multimodal treatment with hand therapy, sympatholytic drugs, and stress loading may be augmented with anesthesia blocks. If the dystrophic symptoms are controllable by medications and a nociceptive focus or nerve derangement is correctable, surgery is an appropriate alternative. Chronic sequelae of contracture may also be addressed surgically in patients with controllable sympathetically maintained pain.
Out of the blue, under the vague title, "Additional Considerations in Complex Regional Pain Syndrome," a letter to the editor, purportedly in response to the work just cited, was submitted by Peter J. Hayes, BA [Univ. of Louisville School of Medicine], Dean S. Louis, MD [Univ. of Michigan, Dept of Orthopedics], and Morton Kasdan, MD [Univ. of Louisville, Dept of Plastic Surgery].

To the Editor:


We applaud the efforts of Patterson et al1 to update and outline the definition, understanding, and treatment of complex regional pain syndrome (CRPS) in addition to the use of the 3-phase radionuclide bone scan proposed as an essential part of diagnosis. However, they neglect critical components of CRPS that have been well documented: the “nocebo effect” and psychogenic illness. Patterson et al state that CRPS should be suspected in any patient with unexplained or inappropriate pain; nevertheless, hand surgeons must be cautious not to rush into a diagnosis because of the nocebo effect. Specifically, a diagnosis without objective evidence can give the patient negative expectations and lead him to believe something is wrong before evidence for the pathological process is proven. As a result, the patient may not respond to any treatment given because he is preoccupied, trying to prove the legitimacy of his symptoms. Moreover, a misdiagnosis with CRPS can lead to “medicalization,” an avoidable process in which attempts are made to treat nonphysical ailments with invasive procedures. Not only does this have negative consequences for the patient, but it is also a preventable drain on the resources of the health care system. Finally, Patterson et al failed to mention that CRPS is often associated with psychogenic illness. Patients often have a diathesis personality disorder causing emotional insecurity and present as chronic complainers. Misdiagnosis of CRPS in patients with psychogenic illness allows these patients to justify their factitious disorder and reap the emotional and monetary benefits of being sick.Thus, it is essential for hand surgeons to take a multidisciplinary approach to the diagnosis of CRPS to avoid the nocebo effect, and to be wary of maligners.

First off, love the last word typo.  Let not the Hand Surgeon be maligned;  Get back, you maligner, you!

I read the letter, realized it contributed nothing to meaningful CRPS conversations, and prepared to move on, glad that someone got their name in print -- published, perhaps, so that he'd not perish.  But the tone was just strident and outdated enough as to be familiar.

[Published, perhaps, before he perished?  A last hurrah?]

To pass this opinion piece off as scientific work, the authors took pains to establish a few "references."

And there he was, the stinking turd:  Jose Ochoa.


References 
  1. Patterson RW , Li Z , Smith BP , Smith TL , Koman LA 
  2. Complex regional pain syndrome of the upper extremity . J Hand Surg .2011;36A:1553–1562
  1. Mackinnon SE , Holder LE 
  2. The use of three-phase radionucleotide bone scanning in the diagnosis of reflex sympathetic dystrophy . J Hand Surg 1984;9A:556–563
  1. Stutts JT , Kasdan ML , Hicket SE , Bruner BA 
  2. Reflex Sympathetic Dystrophy: misdiagnosis in patients with dysfunctional postures of the upper extremity . J Hand Surg 2000;25A:1152–1156
  1. Louis DS , Lamp MK , Greene TL 
  2. The upper extremity and psychiatric illness . J Hand Surg 1985;10A:687–693
  1. Ochoa JL 
  2. Truths, errors, and lies around “reflex sympathetic dystrophy” and “complex regional pain syndrome.” . J Neurol 1999;246:875–879

I figure the recent increase in searches for Ochoa here at elle est belle la seine la seine elle est belle must be in relation to this unfortunate citation of his "work." That, or he is out and about again, testifying in worker's compensation hearings, spreading his miserable manure in the guise of expert opinion.  I doubt that, though, or doubt, rather, that his opinion continues to count as "expert" in any court.

What a tiresome man, tiresome mindset.

Let's give the last word to the authors of the September 2011 "original" article, since they responded to the Letter to the Editor by Hayes, Louis, and Kasdan -- and, in my opinion, responded well:

We appreciate the interesting commentary by Drs. Hayes, Kasdan, and Louis that highlights the difficulty of diagnosis of a medical condition without a pathognomonic marker. Unfortunately, medical conditions without absolute diagnostic markers are a common occurrence. For example, it is difficult to argue that the diagnosis of seronegative rheumatoid arthritis with synovitis, pain, and joint changes, but normal laboratory tests, portends a nocebo effect. We agree that objective measures are extremely important, and documentation of autonomic or vasomotor dysfunction, atrophy, and/or functional impairment is critical before a final diagnosis of chronic regional pain syndrome (CRPS). “Bone scan–positive” CRPS is a real entity and provides objective corroboration; however, “bone scan–negative” CRPS exists and has objective signs. In patients without classic findings, positive bone scans, and obvious autonomic dysfunction, care is needed to avoid misdiagnosis. Despite the desire by all of us, CRPS is not defined by bone scans.1 The authors are correct to emphasize the importance of a differential diagnosis. The commentators among others have warned of the symptoms and signs of malingering and factitious events (eg, “clenched fist”). In general, the patient with CRPS demonstrates metacarpophalangeal joint extension and mild proximal interphalangeal joint flexion.


A psychiatric or psychological causation of reflex sympathetic dystrophy or CRPS is not supported in the literature by primary articles or meta-analyses. This literature refutes the concept that CRPS—as manifested by pain, autonomic dysfunction, trophic changes, and functional impairment—is a psychiatric illness.2, 3 There is no argument that chronic pain affects wellbeing and can precipitate severe emotional responses in patients with personality disorders, including dependent, passive aggressive, and histrionic responses. We did not mention a “diathesis personality disorder” because this concept is not supported by data in any scientific literature. There may be genetic influences that contribute to the severity and chronicity of CRPS; however, these possibly genetic profiles are poorly delineated and not causative.


Clouding the issue with the concept of a nocebo is problematic. In 1961, Kennedy used the Latin term Nocebo (“I will do harm”).4 In pharmacology, a nocebo produces intentional unpleasant consequences; in anthropology, a nocebo ritual or intervention implies malicious intent. The misdiagnosis of CRPS in an already symptomatic patient may have unintended repercussions but should not be labeled as malicious; if based on a diagnosis, treatment is neither placebo nor nocebo.5 We agree that the diagnosis should be thoughtful, based on careful history, knowledgeable examination, and appropriate adjunctive testing. However, failure to diagnosis variant or partially treated CRPS can delay recovery and cause noteworthy harm.


Monday, March 5, 2012

Just Sound, Just Noise

ARCHANGEL SAMAEL


While in ICU in February, I hallucinated pretty much nonstop, with a full soundtrack for the rich visual tapestry I wove, ostensibly to force a measure of sense into a nonsensical situation.  The problem actually began back in January, a few days after the first surgery in this series [of what I pray to be three!].

Initially, the issue was confined to my ears and my hearing;  There were no outside actors, no severe yellows or oranges, no vest-wearing flight attendants in lieu of breezy, unconcerned nurses.  Just sound, just noise.

The talented infectious disease folk determined then that Vancomycin was the culprit, given its reputation for ototoxicity.  Also, and I'd forgotten this, I'd had the same reaction before.

What is it like, auditory hallucination?  For me, the bizarre results stem from the meshing of tinnitus and distortion -- with the major push toward insanity coming from hyperacusis.  It translated into the sound of a Paul Revere copper-bottomed kettle in the early moments of its first, hesitant whistle.  It adopted the hushed wheeze of a pneumatic door, closing. [As a gimp in a wheelchair, I have intimate knowledge of AutomaticCautionDoors -- the name meant to be crowed without a breath, but with concupiscence, since I love AutomaticCautionDoors, and I wants me one.]

There was never any confusion about whether I heard things in the world [kettles and doors] or the utterances of people.  The weirdest detail of all this weirdness was that people never spoke with autonomy.  No, they echoed -- they echoed what I said or the verbiage spilling from the television.  When visible, they expressed themselves normally and I perceived them normally.

For example, nurse Juanda [a wonderful clinician, a delightful person] might stand at the foot of my bed, explaining the steps of giving a blood transfusion.  I see her as she is;  I hear what she says, and only what she says, except for the sonorous background of whish:whish and spiky-squeal:spiky-squeal.  The door to my room is closed, a state I try desperately to maintain, for it keeps out the subjects, and objects, too, of my auditory hyperacuity.

Juanda, unfortunately, is one of the worst when it comes to flying out the door and leaving it wide open, leaving my mouth in a Big-O of Oh-No, for now I am subject to the whims of noise in the hall and at the nursing station.

So, although now absent, Juanda's garbled talking to her colleagues mixes with whish:whish and spiky-squeal:spiky-squeal.  Alone in my room, sliding around in that ridiculous bed, I mutter, "Damn it, Juanda.  Why can't you manage to close my freaking door?"

And I promptly hear Juanda (sometimes also a chorus of cohorts) repeat, in singsong style, with laughter, "Damn it, Juanda.  Why can't you manage to close my freaking door?"

There was often another effect, one that is even more challenging to describe.  Maybe you will understand... a sound warp?  No?  How about the wah wah wah of Charlie Brown's teacher?  Better?  Okay, well, take that effect and imagine her wah wah wah as a small portion of my echo -- imagine "damn it, Juanda" in wah wah wah form, but really, really LOUD, and only on one side of your head.  It was confined to my right ear area... and I say "area" because, honest to God, it seemed to come mostly from my jaw.

[Why not be honest?  I sound like a total nut already!]

While it was reassuring to be told that I'd not descended into some snake pit of mental illness, I was scared by the warning that these changes might be permanent.  I became an instant introvert, sucking a bit on my lower lip, and humming.  The cure for Eerie Echos was to simply say nothing, a cure wholeheartedly supported by a weary Fred, who looked on the verge of collapse, and whose body visibly jerked whenever I barked, "Did you hear that?"

They switched antibiotics and the weirdness disappeared.

The experience in February? You, Dear Readers, will be the first to hear about it -- although I did offer a sanitized version to a couple of people.  As caretakers, doctors, and nurses have regaled me with stories of "how [I] almost died," I've been able to piece together the "real" events behind what I hallucinated, with the resultant conviction that reality does not matter.

Here's what happened [and you may debate "happened" within the familiar decor of your own brain]:

There were four angels trying to save my life.  Heavy blocks of concrete, each block bound with orange plastic ties, were attached to my arms and legs.  I was caught in a mesh of girders, spikes, construction-themed stuff, and by caught, I mean, impaled, conjoined, pierced, smushed.

There was, however, no pain.

After a day or so of struggle, the five of us concluded there was no good outcome available, that I would have to die.  It was imperative, however, that my body be set free of the blocks, the shards, the spikes, the nails and bolts and beams.

The four angels said I must be flailed, alive.  The four angels said that I must then be deboned, alive.  [Yes, I am aware of the easy resonances of these torturous words with the state of my health, with my orthopedic prospects, even -- I am warned about the possible outcome of a flail arm, for instance.]

They handled the flailing.
But I was in charge of my own deboning, my own disarticulation.

There was music, lovely music, and interludes during which we all slept.  They kept me comfortable, floating in the air, in fact, by the soft, soaring music that originated in those angel minds.

"Why do you insist on speaking?  Talk to us as we talk to you."

Every now and then, filtered through my hallucination, came the words of the doctors and nurses trying to help me:  "What are you doing?  What are you trying to do?"  Mostly I heard them during the many frazzled, failed attempts to remove the heavy weights from my arms and legs, to understand how they were strapped to me, so that, through some blueprint or other, I could unstrap them.  And throw them.  I remember wanting to throw them.

There was some incidental, ridiculous drama, involving a radioactive blast.  You know, the usual.

The thing was... I wouldn't die.  The four angels were distraught.  I must also have been pretty depleted, psychically, because the story devolved in stark fashion at this point.  That's right, there were firearms and my head was the designated target.

Wusses, the angels.  They said their goodbyes (promising me sight of the Face of God as a reward for the chutzpah displayed in all that flailing and dissection), passed the gun back and forth, talked a good bit about some soap opera, and then concluded that they couldn't do it.

Yes, the hallucination must have been breaking down at that point, because, in addition to hearing the woes of soap opera characters, I had this reported conversation with one of the "intensivists":

Intensivist:  Why are you waving your hand?
Me:  I'm trying to help.
Intensivist:  Help who?  Do what?
Me:  Help them.  Help them shoot me in the head.

My logic was impeccable.  The angels were seated, of course, out in the hall, in shabby collapsible chairs, looking for all the world like almost drunk fishermen in the muddy low water of a local lake.  Maybe the sun was in their eyes.  Maybe they were tired -- some of them had had to leave during the night to tend to other near calamities -- and their vision, as a result, was not so sharp.  So I put my hand behind my head and wiggled my fingers with joy and abandon, hoping that would relieve the angst of having to aim.  Just blow away the jittery appendage dancing behind my curly hair, and all would be well.

The next thing I knew, my eyes opened, and an intensive care cubicle emerged, neat as a pin, full of beeps and alarms, cream colors, and green, with a window looking out on a brick wall.

I said, out loud:  "I got to meet the angels, die, and live, too?  Wow."

I remained crazy for a few more hours, but it was a fun crazy.  One of the cooler angels had promised, should the Face of God thing not work out, some quiet and a pickleback.  That's right, a shot of Jameson's chased by a fine pickle juice, all wrapped up in a plush silence.

whish:whish
spiky-squeal:spiky-squeal

whish:whish
spiky-squeal:spiky-squeal

The various theories?  I had a raging infection -- a large pocket of infectious goo had gone undetected during January's surgery -- a high fever, dehydration, out of control CRPS, jerkjerkspasmspasm, all served up by two falls on the cold, hard bathroom floor.

My favorite part of the fairy tale?  Because the hospitalist could not be bothered with the list of meds in records dating from all of two weeks prior, because she didn't decipher the careful etching on my MedAlert necklace (particularly the notation of adrenal insufficiency), because no one consulted the medication list in my wallet (nor the CD-ROM of my medical history, one of the benefits of frequenting MDVIP), I went without stress dose corticosteroids, methadone, Cymbalta, and other pharmaceuticals whose abrupt withdrawal cause... hallucination.  Among other things.

I've spared you, and myself, Dear Reader, with this abridged account of the goings-on.  There was nary a mention of how I emerged from those flailing and deboning sessions convinced that I had but one eye, and no nose.  That my surgeon had shortened my feet.

When they transferred me to a regular room, I was convinced that we were rolling through scenes from a Cirque du Soleil performance.  Oil paintings of hospital founders and benefactors winked and nodded as we passed.  Workers clad in pink and blue scrubs did quick little dance steps, dipping their chins and eyes in the demure pleasure of movement.

And when the glass of water and leftover iced tea from a missed lunch turned out to be only water and tea, not Jameson's, and not pickle juice, I was able to smile.

It comes off as sounding like profundity, implying great meaning, these stupid little stories.  People worry to hear the strange details, not understanding that clues from the environment played as much a starring role as the weirdness of my psyche.  The way I choose to see it, my brain's job is to make sense of things.  Increasingly, the means by which to do this are in short supply.

Sunday, March 4, 2012

big plans for today!

big plans for today!            

i am determined to do laundry, change the bedding, and... rotate the mattress.  there's quite the indentation in the one spot where i haul my legs, torso attached.

every task is qualified.  doing laundry requires smaller than usual loads, in hopes of not causing the machine to wail out its concern over my balancing techniques.  transferring the wet, clean contents of the washer to the dryer requires the assistance of fred, bianca, or an errant member of the domestic staff -- though buddy, the freakishly large kitten, conveys his willingness to help, as well.  sometimes, in a fit of pique common to the maine coon, he files a grievance on behalf of the feline contingent of marlinspike hall, the gist of which is that they worked long and hard, in miserable conditions, to impart a suitable scent to the items being washed, and -- if it please the court -- they request a Stay of Laundering.

he's staring at me as i type this.  that's okay, you humongous hunk of cathood, i stare right back at you!

my back itches, my hands are peeling.  my forehead is dominated by a glowering unibrow.  pseudomonas is growing in my shoulder wound.  vinegar is my friend.  seven minutes, not four, is the perfect brewing time in my new bodum french press, at least with this italian roast.  how the heck have i managed to rotate this mattress in the past, much less now?

fred fell back into his lax ways last night, staying up until 5 am, when we blinked at each other in passing.  soft, quiet blinks.  i may also have wagged an index finger, don't remember.  he'd been doing quite well getting to bed earlier but must've got caught up in some project... or a movie.

i bring up our blinking encounter because some of you think fred should jump in and rotate the mattress for me.  he's offered, really, he has.  just as my tasks are qualified, though, so are fred's offers of assistance.  he'd be happy to help -- in his own time, usually plotted in an amorphous territory lazily called "tomorrow," and in his own way (when putting up groceries, for example, he leaves unrelated, stray items sitting on the counter -- where they would stay unless i stashed 'em somewhere;  when putting my clothes away in the closet, he likes to place the majority of them on shelves i cannot reach).  go ahead and call me a bitch, i don't care.

it's just that i have run into a good half dozen instance this morning, already, of not being able to reach some common household items.  this usually means that i have to grab a grabber, and not many of them are in good shape any more, and pull, prod, push the item so that i can catch it as it falls.  my arms are too weak to keep the grabber's bite firm enough to actually grab the thing...

it is possible that i am run down, depressed, and choosing to deal with it by taking others' inventory, lavishing upon them the criticim that i, alone, am due.

okay, well, here i go.  it looks like there will need to be a bit of eviction action before the actual bedding change.  buddy and marmy, an unlikely couple, are curled up together on top of three pillows.  three!  dobby, sweet diplomat, holds an obscene pose, stretched out in all his glory atop a pile of dirty clothes, pink nose and ears, the star on his head, a dependable point of reference.  dobby is not a lap cat, but has become one, temporarily.  he figured out that i need to be needed, so he needs my very lap, shooting threatening looks at buddy, who has a tendency to hoot at the perceived weaknesses of  his manor mates. heart of a lion, has dobby.

i took considerably less pain medicine yesterday, and hope the trend continues today.  i remain exhausted, and wonder if i need another transfusion -- i had two units in the hospital -- though the more likely cause is that i am... exhausted.  no sinister reason behind it.

the dressing changes aren't the facile, pristine affairs i had envisioned.  i don't much care for blood or red, glistening tissue, or the thought of microbes prancing around midst all that... effluvia.  ew.  ick.

but there hasn't been another instance of accumulated green stinky gunk, nothing like what the orthopedic surgeon recognized from across the room as an infestation of pseudomonas.

did i tell you i am walking some?  from bed to bathroom, and i haven't taken a tumble yet.  there's been, in fact, only one moment where the floor loomed large, and i recovered like someone who has been walking her entire life.

yes, i AM trying to put off the work at hand.

sigh.

you are a tyrant, sweet reader.



Friday, March 2, 2012

A Calm Acceptance Is Within My Grasp

we did okay yesterday.  at the end of the day, there we were:  accounted for, joking around, a little breathless.

the end of the day jars my memory -- i've never read kazuo ishiguro's the remains of the day. i enjoyed the film adaptation, despite not having much fondness for anthony hopkins. i chuckled nervously just now upon learning that there was a well-received musical version... surely someone is punking moi?

let's steal it as a theme, what do you think? the decline of aristocracy. i see it all about me, i see it in marlinspike hall, in spite of (or because of?) a strict tradition of genetically indentured servitude within the domestic staff's nucleic code.  i see it in the algae colorfully clinging to the edges of the moat, sliming the captain's miniature pink submarine.  all of tête de hergé (très décédé, d'ailleurs) is witness to the fading luster, what with budget cuts to roadside bonsai forests, as well as the recent spate of re-appropriations of museum donations -- primarily of period clothing -- by some of the oldest, most respected, and storied families of the realm.

first on the list yesterday morning was the infectious disease doctor and his fancy-schmancy new infusion center.  we left early, we got there late.  lots of tête de hergé traffic (balloons and the usual signage game play), lots of fender-benders -- but tiny fenders, at least, on the mostly clown cars.  red bulbous noses, yarn hair, voluminous striped britches.  it was hard to be upset in the middle of primary colors and popping jewel tones.  ruby, the honda cr-v, waded through the mess like the champion that she is.

the office had relocated since my last visit, and while the staff was perfectly calm, there were glazed eyes, lost supplies, misplaced charts (doctors' notes were being recorded on pink post-it notes) and rooms piled high with the disparate art work of gone-out-of-business motels.  the few finished walls boasted cooler fare, mostly activist expressions about HIV/AIDS, human rights, amnesty international, as well as small touches in each exam room, like autographed pictures of the docs with magic johnson or anthony fauci.

what they are gonna do with the motel art?  well, dear readers, i respectfully introduce the motel art show series, such as "The One Night Stand At The Ole Miss Motel on September 3, 2009":

Under the direction of photographer Erin Austen Abbott... [of Oxford, Mississippi] the show kicked off in 2007, followed by one in Los Angeles the next year. “I was taking pictures at an old Travelodge-style motel, the type that you drive up and park outside your room, set in a u-shape,” says Abbott. “All the doors had these wooden red hearts on them. I had heard rumors that the walls inside the rooms were brown wood paneling, and I suddenly had visions of T. Model Ford sitting on the edge of the bed, playing his hill country blues while fine art leaned against the furniture or replaced the current art hanging in the rooms.”


Abbott immediately went out and found 10 artist friends who were having a hard time showing their work locally. They made up the first show, and, in 2008, she took her motel art show on the road to Los Angeles. Over a thousand people showed up for “The One Night Stand at The Beverly Laurel Motel,” and the show was featured on Yelp and in the Los Angeles Times...


For art lovers who don’t live near Oxford, Abbott has good news. Next year, the show will be presented by The Yoknapatawpha Arts Council (named after Faulkner’s fictional county) and, in addition to being held in Oxford each October, travel to other locations in the spring and fall. For 2012, the Motel Art Show is scheduled to hit Brooklyn, New York, in May and Nashville in September.
so i am thinking, why not a variation on the motel art show model?  why not "decoration's remains," about medical office leftovers?

i'm jittery this morning, can you tell?

anyway... what i most appreciate chez the infectious disease dude's place are the boxes of tissues placed at intervals of every 2-3 feet.  i am always springing a leak of some sort when i visit.

it was determined that yesterday was day 36 of my 42-day intravenous antibiotic sentence, and that i would, all things being equal, have my PICC line pulled next wednesday after the final dosing of antibiotic tuesday evening.  there were arguments made over then beginning an unending course of oral antibiotic.  i didn't listen very closely -- spasms in the left leg and in the left shoulder (that's a distressing place to have muscles seize, smack dab in the middle of an open wound).  i have nothing to contribute to the conversation.  just tell me what to do.

ever since the head infectious disease doctor dude saved me from an ignominious end a few years back, i've trusted him implicitly.  i was an inpatient, crammed into a shoebox of a room ["it's a private room!"].  trapped by thick beige plastic bedrails, i could just make out the outline of my wheelchair, stashed in the corner by the leaking sink and plywood wardrobe.  a familiar urge overpowered my good sense and i crawled between the burglar bars, landing atop, although also landing askew, one of three bedside commodes. shoving aside four types of aluminum walkers [a rollator, a hemi-walker, a platform walker, and the drive knee thingy] before reaching my power chair.  satisfied sighs as she powered up, no worries in that regard, no need to find a charger midst all that junk.

long story short, yes, of course, now i was trapped in my chair instead of in my bed.  i strove to push my way out of the corner, tried equally hard to plot the path of least resistance in the general direction of freedom.

within five minutes, i was red-faced, hair all sweaty tendrils, cursing and sobbing, à la fois.

enter infectious disease dude, the head dood, in fact.  he's a geeky looking fellow, very tall, bent, kind of a craggy face, but kind. a marvelous sense of humor, but you have to be patient with it -- it's shy. better not to laugh too loud or too much.  in fact, better to arch a simple eyebrow and allow just a hint of a smile in the eye.

the doctors of today don't engage. they see a patient trapped as if surrounded by an ice floe in a room that draws junk to itself like a magnet attracts iron filings.  this doctor, however, fairly leapt over the obstacles, deftly (well, not deftly, but with dreams of deft-itude) piling and reworking the layout.

"there!" he crowed.  "you're free!"  i've been downright fond of the man ever since that liberation.  he laughed with me as i confessed that i really had nowhere to go but back to bed...

i saw a new PA there, my doctor and his usual PAs apparently having been lost among the huge boxes and crates.  [wow, a leitmotif!]  having a new PA was distracting, as she was staring at my feet and hands, her own hands suddenly anxious, her fingers picking at her fingers, now and then twirling a thumb ring.  she had some sort of medical blackberry, some sort of know-it-all electronic resource, and was peeking, picking and pecking, making furious inquiries.

CRPS is oddly symmetrical, i've noted that before.  the latest evidence comes in the form of "matching" pus leaks from below the cuticles on my middle fingers and thumbs.  it is bizarre and has held the attention of many hospital types, usually in lieu of dealing with my screamed complaints about the spasms.

so we all oooohed and aaahhhed over the pus on my hands, how weird, hmmm, and huh, wouldya look at that?

fred and i drove across town, got lost, got found, checked in, finally, at one of the satellite offices of dr. shoulderman, my orthopedic surgeon.  we stared at CNN. i zoned out. fred kicked me, and i was called back into the labyrinth of exam rooms and x-ray cloisters.

the x-ray tech looked very familiar and she positively lit up upon seeing me.  she and her pals had been working the last time i had been there, mere hours before ending up in an ambulance, heading for hell in the icu.  "you were so sick," she said.

"you look a thousand times better," she ended, and i decided she was the most talented and deserving of x-ray techs that i'd ever met.  cute, smart, perspicacious, insightful.

the gist of the visit?  pseudomonas in the wound, which had an unattractive green cast to it, and a smell which the surgeon described as "fruity," but which made moi gag.  he was completely calm, and swore that a vinegar solution, in place of the saline soaked wet-to-dry packing, would quickly solve the problem.

we hope so.

i especially hope that it is easy to do, since the first message on the answering machine upon our return home was my MDVIP go-to-guy's nurse saying that insurance was not covering home health visits and that she'd cancelled their plans for this wound.

my reaction to having compiled yet another huge bit of medical debt was to try and sleep a little bit.

thus far this morning?  the home health agency has called three times, and -- convincingly -- told me that my MDVIP go-to-guy's nursenurse is misinformed.

i don't care. someone is right, someone is wrong, but i just don't care.  i can do this dressing change -- piece of cake! fred, bianca and i have the antibiotic infusion under control; and i am getting stronger, day by day, thanks to not being trapped in bed by wires and tubes, and ignorant assumptions.

i'll let you know if there is any attitudinal shifting once i am faced with the green stinky evidence.

psychologically, i am not in a good place, but i am trying.  if the spasm-meanies will give me a bit of peace, i think a calm acceptance is within my grasp.








Thursday, March 1, 2012

Adverse Possession

a long and important day ahead:

two appointments, two dressing changes, lots of driving -- the most activity since, well, since things went definitively to crap.

i am preoccupied with thoughts of my mother.  not loving thoughts, not gee-whiz-but-those-were-the-days retrospection.  no, it is more the sisterhood of the fallen.

i correspond regularly with a nephew i've never met.  like most kids, he's cool and we have pithy exchanges about such things as why he named his turtle "ron paul."

in the process of writing each other, it's inevitable that news of the clan insinuates itself into our purity -- these relations all live in the same town.  the mother-unit, her two preferred offspring, their lovers and spouses, their children.  i don't know them, sometimes like them, sometimes find my lip curling in derision, often am just confused.

that's why i prefer my nephew.  he has a dry wit but he's honest.

it turns out that his grandmother, my, cough, mother, has taken to falling down.  like a fish out of water?

my sister-in-law decided to flesh out the situation for me, the absentee daughter, in an email yesterday... the result of which was not pretty.  first, i wrote a condescending email back to her.  it began:

you gave me a lot to think about, and thinking is... hard, right now. it is easy for me to sit down here and wish things were different in YourTown. but now that i've a better idea about what's going on, i'm kinda flabbergasted.


there are a few things that we all agree on, i'm hoping:


infighting and backstabbing are wastes of precious energy and resources;
my nephews and their parents are all awesome individuals;
my mother should not be on the floor, ever.

like a thickening sauce, i was on the phone just a few hours later, calling my half-sister, and as she further fleshed out the situation regarding the mother-unit and her fondness for the floor, i heard myself yelling and screaming.  what kind of things did i so articulate?  fred said he heard this one several times:

"it is not normal to leave someone lying on the floor for 13 hours! it is not normal to think that that is okay!"

it boggled my already boggled mind to learn that she'd fallen "between 20 and 25 times" in the past two weeks.  my brain imploded at statements like -- if i stayed with her, i couldn't pick her up, but i could call my husband, who could come over and get her up..."

hello?

hello?

seriously, hello-o-o-o?

please tell me that i am not weird for thinking stuff like -- how about preventing the falls to begin with?  what does the doctor say?

then there is the obvious -- hire someone, take her to your home, move in with her, stick her in an LTAC (not me!), get her some PT...

but the plan in force seems to be:  place lots of phones about, so when she falls she can crawl to one and call for someone to come pick her up.

yeah, so i screamed and yelled.  not because i love her at all, or care what these folk do, ultimately, for one another, but because no one deserves such pointed disregard.  no one.

also, i am of the Felled Sisterhood, remember.  twice in the last month, i have fallen, both times while horribly ill, depressed, hopeless.  it has nothing to do with being on the ground, everything to do with wanting just to give up.  it hurts, too.  it's embarrassing.

i remember, the last time, my head freshly banged, my operated shoulder throbbing, my knees skinned, my toes twisted, begging my entourage to say only positive, encouraging things as i tried desperately to get my legs to work, to move in a predictable fashion.  my entourage, unfortunately, thought that request was crazy talk.

"that there is crazy talk," the entourage said.
"meow," said dobby, who thought my head crammed into a pristine corner of the bathroom tile a riotous affair.
"someone call 911?" asked the fireman.

even the rescuers were scared.  i mean, there i was, saying, you can't pull on my left arm, my legs aren't working, i've injured my left hip, hit my head, and no one will chant cheers for me, there are no pom poms, and you sure as hell better not have shown up with lights flashing and sirens sounding, because captain haddock will hear about it, and we'll have our squatters' rights snatched out from underneath us faster than you can say "miserable blundering barbecued blister."

i absolutely have no clue how things roll in my mother's world.  there was, in all of yesterday's exchanges, a tale about how she called 911 for help, how one of the EMTs, who knew her and her family, called her son instead of actually going to her house, so that the son, after what i assume to be a fair amount of time, was the one who arrived to scrape her up off of the floor.

it's funny, the things that ultimately sent me flying around the room backward, whistling dixie.  like the statement:  "mom hasn't been very compliant with her meds." no shit,. sherlock!  i mean, imagine.  you're lying on the floor (again) and you think, "well, drat, it's time for me to take my blood pressure medicine..."

the other thing was this whole "but we're not gonna tell her" thang that i believe is common in dysfunctional families.  in lieu of a life spent loving one another, there is a concerted effort to show loving control at life's end.  they want to keep certain medical information from her... "she would be upset to know x, to know y..."

but it would at least give her something to think about besides how nice it would be to put some plush carpeting in the family room or how to best clean the stains on the grout in the kitchen.

so anyway, today -- it's going to be a difficult day for me.

for lots of people.