Saturday, March 17, 2012

The Hunt for Normal

I have so much to say.  I just wish it would cohere.  Also, I wish for a secretary, a non-judgmental polyglot wordsmith.  Who bakes and scrubs toilets.

Beware this sudden conviction that I have so much to say, as it comes in the wake of several days spent feverish and nauseated, and most recently, sleepless.  Fred calls me "hyper" when I get like this.  Fred also never believes me when I blame it on a fever.  Fred can be annoying.  As if there were some behavioral component to my... behavior!  Harrumph, and harrumph.

O, my Brooklyn Boy!  Annoying on occasion, almost always kind, forever driven to plumb the recesses of something called "normal."  He is doing something that I did a few years ago, though with less of a sense of mystery.  He is contacting a sibling, his younger brother, whom he hasn't seen, with whom he hasn't spoken, in forty years.

Fred's parents were monsters.  They dedicated themselves to hurting him in ways that are too imaginable, too memorable, so that today his Hunt for Normal is marred by incessant imaginings of the world's propensity for abuse, and by cascading onslaughts of memory:  a stiff leather shoe to the back of his head, a loved one's knife thrust, incessant assurances that he'd amount to nothing.

Do not make my mistakes.  Do not assume you have heard all the pertinent stories, gathered all the damning details, and assigned some sort of limit to your loved one's tensile strength.  It is shameful that I ever consider anyone immutable and static, much less Fred.


Caught up in myself, my pain, my own stuckness in stuckitude, I felt virtuous to note, several times each day, what Fred was doing, and his demeanor.  Of course, stuck in stuckitude, Fred's demeanor meant his feelings toward me, his actions on my behalf or to my detriment, and any other narcissistic point of view the moi-moi-moi-in-me could come up with.

But then dear Fred would shyly show some sign, an astringent that cut through the greasy smears, an acid that clarified what was otherwise a jumbled mess of sensations.

His eyes would be red-rimmed, the trail of tears still there on his ruddy cheeks.
Those same reddish cheeks can go pass-out pale, blotchy, bloodless.
His sobs have carried to the far reaches of The Manor but so briefly that you could choose to assign the noise some other cause, or declare that it came from the opposite direction.  You could, but you don't.  You're not yet that egocentric.

It used to be that he'd punch walls and doors, throw things [and animals], kick things [and animals], screaming himself hoarse.  He never hurt the animals, but he did scare them, and me.  It's a frightening, violent thing, Fred in the throes.

Anyway.  One night, or very early morning, the silence from his workroom felt ominous, so I ventured back there to see what was what. It being hard to sneak up on someone in a dilapidated wheelchair, Fred heard me coming, and seemed to welcome my noisy arrival. In the course of my usual inquiries, and almost in the form of complete and simple declarative sentences, Fred told me the story of the male infant who died -- a baby brother -- when Fred was just, I believe, four or five years old.

He remembers the baby, he remembers the dead child being taken from their apartment. His parents' profound grief, his own confusion. And he has somehow determined that rough point in time as the start of most of the abuse his mother, in particular, dedicated to his destruction.

A reasoning man, often reasoning to the point of absurdity, reductio ad absurdum, Fred concluded that he had somehow killed that baby, thereby so offending his parents that they branded him -- a hyperactive, intelligent, loving child -- as the source of their bad fortune.

She tried over and over to kill him, our Fred.  And though he survived, with his goodness and capacity for love intact, he also broke into pieces.  He grew into a man for whom the world was a soldered amalgam of stained, broken glass.

I don't mean to think about that unpleasantness, especially now that Fred is reaching out to his surviving brother, an occasion likely, I am convinced, to bring him great joy (as a similar instance brought me).  It's just that I see frailty pretty much everywhere these days.

Frailty pisses me off, especially when it's the best descriptor of my own state.  It means I am subject to the whimsy of even inanimate objects, of the bathroom floor, should it want to swallow me up or give my brain a good shake.  It means my will subsumed by a wad of heavy, wet, sweet-smelling clothes stuck to the speckled gray enamel bottom of the washer.  It means faceless voices suggesting "case management."  Frailty, most of all, means not being able to take care of those I love.

Right.
So.
Anyway.

The weekends are sometimes rejuvenating for Fred -- as he spends at least Sunday morning with the Sisterhood, the Militant Lesbian Existential Feminists, who are always up for a good time, or a good argument.  They're likely all a-twitter this week, given the purported Attack on Women, that wily stratagem of the Merger and Acquisition Department of the GOP.

I roll my eyes as Fred informs me that he, too, would like to impede the progress of the Violence Against Women Act, because "men abused by women are left out." I tell him this is not so, and I don't much guard my tone.  [I have terrible tone.]

I show him proof, copied from a government web site:

Q. Can A Man File A Petition For Himself Under The Violence Against Women Act?

A. Yes, VAWA applies equally to victims of either sex. 

Ergo, I am correct.

Fred counters, "Well, that isn't widely known, and besides, why can't we call it the Family Violence Act, so that inclusion is obvious?"

He's right.  The Sisterhood may look at him askance tomorrow morning during the Sharing of Our Existential Outrage portion of the worship service, but he's right.

Annoyingly right, often -- because in the Framework of Fred, gradations of right are meaningless.  It is all or nothing in FredLand.  One of his favorite things to ponder?  The joys of instructing The Wrong on the perils and pitfalls of their predilection for Logical Fallacies.  The boy practically salivates, actually believes that correcting faulty procedures and iffy premises will alter the world's swirl of unfounded opinions, that great tornado!

Do you see why I love him?  His persistence in being right is a supremely optimistic evolution for a beaten and belittled child.  He has learned, of course, that not everyone will respond to his right or wrong world view, though he clearly thinks that with a little effort, they could, and should.

I don't have a point to make, so call this a Reminder to Self, so call this a bit of a "vent."  I am always slow to venture out after a period of insulating, severe illness.  It feels like what I imagine little Dobby felt the first time he bolted out of doors and cowered, shivering, under a midday sun -- the protective ceiling is gone, there is too much air, and the boards under my feet, how did they become molten lava?

I have to relearn old lessons, for the umpteenth time.  Things like, "that's life," and "it's not about you."

If you've any to spare, send our Brooklyn Boy some openness to nuance as he sets out to build paths and bridges that safely skirt the accreted muck of generations.  And if you are a particularly gifted empath, able to sometimes project your will onto the will of others?  I love it when Fred brings me coffee in bed (Italian roast with just a smidgen of milk) and there are three dryer-loads of clothes that want folding.

Thanks for letting me ruminate, percolate, gesticulate!

Next week, Bianca, Fred, Abbot Truffatore, and I begin the task of cobbling together another wildly successful ManorFest, the premier summer event in the region west of Tête de Hergé's Lone Alp. We'd love it if former Fest-Goers would leave their suggestions for improvement in the comment section of the blog.  Bearers of the Best Ideas win free passes to The Labyrinth, with complimentary extraction provided after just 14 hours.

Wednesday, March 14, 2012

Childhood Cancer, Humble Heroes

Dear Reader, use your influence in the universe, in God's World, with whomever you house in your Pantheon, on behalf of 7-year-old Derek.

I am following the journey of four children with cancer, something that began with Layla Grace, who lost her battle before the desperate hearts of many bloggers and tweeters, as her parents shared her with us, selflessly.  In so doing, they managed to explode a good many preconceptions while reinforcing some comforting old truths.

Layla and her Dad 
I've posted regularly about Kate McRae -- who is entering a new and unknown phase after receiving unexpected and delightful good news.  All while being glad and learning to cherish a new normal, her parents are having to contemplate possibly stopping a good portion of her therapy.  Mom Holly has left an incredible journal of faith, anguish, and celebration at CaringBridge.  Yesterday, she wrote:

Our options are few... taking her off treatment all together and watching to see if tumors that have had time to grow resistant to the treatments grow. Or to find a new treatment. She is currently not eligible for any medical studies, as there has to be measurable disease on a brain scan, a reason for which I am entirely grateful she doesn't qualify. This leaves us to choose from less than ideal treatments, or foregoing treatment. Both with their own unique troubles.
Derek was in Florida, vacationing before travelling to Boston for a new treatment necessitated by a vicious return of his cancer, and began to have unmanageable pain.  Home again, a morphine drip eventually made him comfortable.  His trip was scheduled for yesterday, but Derek had a "massive seizure," and plans were changed.  He and his family are feeling the sudden shift from pursuit of a cure to palliative care.

The word 12 hours ago was that Derek is "resting comfortably" in the hospital, where he stayed overnight as a precaution.

He's a plucky boy, very bright, blessed with a family of depth, humor, and heart.  I've marveled at him and all of them many times;  I've tried to learn what they have to teach, as they smile through the tears.

This Friday, Hannah, who has osteosarcoma, will have a major, life-changing surgery called rotationplasty.  I will be honest:  Even knowing that this decision was made by wise people who love and are invested in Hannah, hearing about this radical surgery coincided with some preexistent nausea and I lost it.  Since then, respect for her bravery and for her desire to live life after cancer in as unrestricted a manner as possible has replaced my initial wimpy somatic reaction. Hannah's Mom has recommended this video for folks to learn about rotationplasty:


Uploaded to YouTube by mayoclinic on Sep 3, 2010:  "This is a pre-surgical video which describes rotationplasty, who the procedure is appropriate for and possible complications. This video depicts the process of being fitted for a prosthesis and learning to use it. The patient describes her active and satisfying life after rotationplasty, her emotions and the process of adjusting to living with a prosthesis."

The fourth child I follow is a complicated Little Man.  His situation is complicated by the complicated socioeconomic factors at play within his family. It's all so... complicated.

More than any other child I've followed, this kid has been subjected to medication and treatment side effects that out-demonize even cancer.  I've come to love his Mom, and her pluck, her persistence in the face of All That Is Unfair.  I've come to understand him, knowing something of life on constant steroids, understanding how the face in the mirror came to be that of a stranger.

So these are the four young ones that I "follow." I don't stalk, I don't contact them or their families except occasionally through a comment in their CaringBridge or CarePages journals.  It would certainly creep me out to have a stranger jump into my concerns -- and these sites are set up to provide patients and families with a good measure of protection.

Derek's family is so warm, so desperately funny as they travel with their "special boy."  They would go to the ends of the Earth were there a treatment available for him, and are now brought up short by the realization that the treatment phase has passed:


The twist to the story, or the change of plan, is that Harvard is no longer an option. We have nothing left in our bag of tricks. The doctors indicated the disease is progressing faster than they anticipated. We need to enjoy every day and make it count. God has other plans for Derek.....see, I knew that boy was special.


But while God has plans for him, Derek is still here, and still in need of prayers, though no longer for a cure, but for peace and comfort.

Please continue to hold him in your hearts.

Monday, March 12, 2012

The Bills, The Cost



The bills are rolling in, made even more confusing by the fact that a heavy yellow fog covers most of the time involved.   Also, I would argue a few fine points, like -- how dare they charge me for life-saving procedures and medications when we all know that I actually spent that time in ICU in the presence of four militant angels, who caressed me with song, and planned to shoot me in the head?

I ought to make a public apology to President Obama for single-handedly bankrupting one of the best provisions of his Affordable Care Act, the Pre-Existing Condition Insurance Plan, administered by GEHA.  I hope he will settle for my thanks and a growing determination to stay out of the hospital.

Except for having to go back to get this spacer out and to get a new prosthesis, that is.  What could happen?

I'm having difficulty composing -- writing -- as well as with the physical act of making finger pad meet key.

So let me entertain you with the contents of a few of these bills!  I won't have to think, my hands get a bit of occupational therapy, and you get to laugh in helpless hysteria at the cost of health care.

Hospital bill -- 17 days -- $116,658.30.  The largest charges, in descending order:
pharmacy $58,650.30
room and board  $15,040.00
lab $14,815.00
operating room $7,282.00

The rest, as Maude might say, is "incidental, not integral."  Some things do anger me, however.  I had one visit from Occupational Therapy, and it was my distinct impression that she was a student, because she introduced her "preceptor."  She wanted to reinvent the wheel, I was resistant to that, and her visit lasted, oh, all of 4 minutes.  This was the day before I was transferred to the LTAC, so it wasn't like the hospital was going to suddenly institute an OT therapy program. $1737.00 for *that*?  C'mon.

And God bless the good physical therapists.  And a curse upon the bad ones.  The best I've ever met happened to work with me there at the end of my stay.  She must have read up on how hostile I was to one of her colleagues, who insisted on showering me with sensory input at a time when CRPS spasms were at full strength.  I think the gist of our pre-session conversation was

PTherapist:  Would you like to get out of bed and into the wheelchair?
Me:  Yes, I would.
PTherapist:  Okay.

And so... I did.  She quietly gathered together the stray tubing, the many wires, and I wormed my way to the foot of the bed, sat on the side, and pulled myself up by the orthopedic bed frame.  I cursed, turned, and sat in my wheelchair, sighed, and smiled.  She laughed.  "Wanna sit up for a while?"

The guy I did not like wanted to mess with my head more than help me gain strength.  He seriously enjoyed tearing me down, having mistaken his hospital job for his normal work as a drill sergeant.  When I said "no" to his suggestion of dumping a pitcher of water down my back as I sat in the wheelchair trying to wash at the sink, he scoffed.  I protested that the wheelchair was new, that I'd rather not douse it in water... He said, "Yeah, you would have the model made with fine leather, wouldn't you?"

The next day, the setting almost exactly the same, I was frustrated by the five people whirling around me, especially the three who were simultaneously giving instructions and asking questions.  Do you know how helpful it is to stand up, and then hear, "Don't you think it would be smarter if you got up on the other side of the bed?" followed by "Do you have safety bars in your bathroom... Now I don't mean towel rods, I mean safety bars?" A few minutes of three to five people saying helpful crap like that, and you might cry in frustration, too.

"Do you know what kind of surgery you had, darling?"
"Put your left foot here.  No, here!"
"Is this your blanket?  It's pretty."
"Don't pull on that... You don't have that at home, do you?  Do it like you were at home."
"Where are your slippers?"

I was having a meltdown, I guess, and the dear PTherapist decided that was the ideal moment to croon, dripping irony all over my clean hospital gown: "That's right... You're a delicate red rose bud."  If he could have spit on me, I think he would have.

I rallied while they were all there.  I told him to shut up.  That is an incredibly rude thing, to tell someone to shut up.


It would've been best to apologize for disturbing the positive flow and energy of our therapy session.  I might have said:  "I'm sorry, did I break your concentration? I didn't mean to do that. Please, continue, you were saying something about best intentions. What's the matter? Oh, you were finished! Well, allow me to retort..."

That's right, I should have unleashed some Jules Winnfield on his arse.


$3,762.00 seems about right, then, for a Physical Therapy charge.

I have no recollection of going to the Peripheral Vascular Lab, but they're getting a chunk o'change, too.  

Friday, March 9, 2012

"a loosely fugued allegro..."



In what may turn out to be a good thing, I've had to reconstitute my online habits, having lost most of the pre-programmed shortcuts that normally get me -- saucily sporting the requisite ruby slippers -- home to Kansas from all the weirdness that is Emerald City.

Not having the usual clues, my neural network scanned the [event] horizon for happenings, but I could only summon yawns in response.  It seems I'm not up for "news" yet but declaring déjà-vu seems a tad jaded.

And declaring déjà-vu by crying "Eureka" in a crowded movie theater?  That, my friends, is a violation.  A citation.  Not of the meritorious kind, either.

No, I'm not out of my head, not overdosing on pain or spasm or thyroid medication, not febrile.  I  woke feeling this way -- sagging, overcome, tired before beginning.  No, not so much "overcome," because that would imply investment and caring and I have no investment in this mess, and I do not care one whit about anything right now.  "Tired" and "sagging" stand fiercely proud [if you're in that head-high, shoulders-back camp] or as unredressed self-indulgences [if you're otherwise inclined].

Could it be a culmination?  Am I going to finally use the math skills of my youth?  Are things finally adding up?

I would warn against trying to figure out why I am upset right now, except that, like my stock portfolio, I'm not particularly diversified.  In other words, there's nothing remotely mysterious, surprising, or revelatory about my conviction that all has gone to shit.  Pick almost any post in this forsaken blog-effort and there I am, declaring that things are bad, awful, worse.  If it comes to nought, it comes from me!

Me?  What about you?  What's your ownership in this mess?  Hmmm?

The problem with YOU, Dear Reader, is that you are sitting there, playing your fingers, splaying your digits, thinking of music, spanning octaves while I throw words on the wall, seeing what will stick, because that's the only way idiots can tell if the pasta is done.

Excuse me for a moment.  I was reading the Wikipedia entry for "sonata," and found the perfect phrasing for what I seek to say, what I am, in fact, performing: a loosely fugued allegro...

Sudden italics and trailing ellipses have saved more than a few offerings around here.  My promise is that tomorrow will not be as adolescent, given that I don't plan on accruing failures overnight.

Also, Duke is ahead of Virginia Tech 25-21, 3 minutes left in the first half.


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.