Friday, February 18, 2011

Looking Up the Garderobe Chute

Good afternoon.

I am sequestered in one of the Guest Wings, the unfortunate theme of which seems to be PAISLEY. It boggles the mind how many apartments are secreted, intact, nestling like pearls, within the complex and complicated walls of Marlinspike Hall. As much as the Haddocks are dedicated to employing local talent, the family gave up on Tête-de-Hergéen electricians and plumbers long ago, resorting instead to their tried-and-true method of Inherited Indentureship -- that's right, they breed their own electricians and plumbers, who then are genetically prepared to deal with the unique intricacies of antique wiring that dates from the onset of the Industrial Revolution and the immeasurable joys of medieval pipes.

Château de Tonquédec: Garderobes by CopperPhoenix  This French château has kept its chutes short, placing them in a tres chic staggered
sequence that prevented them from discharging onto each other.

[Gorfram has a tidy photographic collection documenting early plumbing measures, something she calls The Glory of the Garderobe.  An excellent survey of Garderobe Chutes. If you are wondering about the intersection of functions in the Garderobe, Gorfram also clears that up, noting "they were called 'garderobes' because people often kept clothing in them. The inevitably-associated smell helped to deter fleas and other cloth-eating critters." Crikey!]

True, in 1951, during a spell of sexual overindulgence, condom failure, and an unexplained exposure to megadoses of radiation, there was a consequent period of Manor Maintenance Mayhem, beginning with the Generation of 1967. The Haddock Clan has steadily reasserted its secular rule over the Persuasions of Rome (and Rome's Minions, our cloistered next door neighbors, the Cistercians) and the birth rate among the indentured tradespeople again took on the trappings of restraint.  It was quite the lesson learned, and we now know, and have it suitably displayed in all our onsite signage, that [t]he [radiation] dose limit for the embryo/fetus (during entire gestation period) is 0.500 rem!

Anyway, in keeping with the paisley motif, I am wrapped up in a Kashmiri shawl -- this one the more in-your-face sort, its thin metallic threads of gold and silver hinting at a secret party life.  Our paisleys were born of boteh designs, a stylized pine cone motif native to India but popularized by the Persian Safavid dynasty.  If you are wondering [and who would blame you?], the difference between Pashmina and Kashmiri shawls is in the wool.  Kashmiri wool, or King's wool, is gathered from bushes in the spring, where shedding mountain goats rub to rid themselves of excess. Pashmina shawls are made with a coarser wool, though still a very fine cashmere fiber.

The bedding is paisley;  Two of the five antique wall hangings are paisley -- well, one of the two might better be called an "hommage" to paisley, an over-stylized pastiche; There's a Victorian era chaise longue upholstered in an amazing purple velvet with a border of eye-crossing vintage Persian paisley; And then, of course, there's me, so shawled as to blend into this hidden pearl of a guest nook.

Are you curious as to why I've been unceremoniously stashed back here, never mind the rationale behind the paisley binge? Obviously, I've been hinting like crazy that this situation is not of my doing -- note the verbal accoutrements! "Sequestered." "Stashed," for heaven's sake!

Yes, I was PUT here, hauled away from the centers of activity in The Manor, relegated to a wing with which I am barely familiar.

My feet are supposed to stay up, my body warm, my various humours unprovoked. There is no phone to irk my phone-phobic self; No television blares. Oddly, there is an annoying drip::drip::drip but this section of Marlinspike Hall has no plumbing (which brings up a whole other issue...).

That singular mystery may occupy most of my time.

If you don't hear from me before the end of the weekend, send help. If there are no representatives from the Domestic Manor Staff available, no Fred, no Bianca Castafiore, and if the Extant Felines are less than forthcoming?

Make like Nancy Drew: look for paisley, listen for intramural wetness. Get help: alert The Cistercians, drag Abbot Truffatore away from his illuminated manuscripts, contact Tante Louise!

[Remember, that cell phones have hit-and-miss reception here, though if you stay as close as possible to the Computer Turret -- and make of it, in fact, your personal centrifuge -- you'll be able to reach, at least, Tante Louise -- the Tête de Hergé version of 911. Reach Tante Louise, reach the world!]

Sigh. The battery is low on this thing. There's no reliable electricity in this wing... and I don't have time to illuminate you to the dangers of the unreliable kind. I am meant to dissolve in paisley pools of languid sloth... dream in the low light of candles...

I'm gonna miss the new episode of Animal Hoarder. Crap.

Tuesday, February 15, 2011

USAmerican Style

The price of an extended period of fairly rigorous physical activity, for me, has been some challenging pain, pretty doggone severe edema, and evening flares that include moderately high fevers.  I was tossing back ibuprofen tablets with wild abandon until my stomach rebelled -- not just against the NSAID, but in profound rejection of the antibiotic and prednisone, as well.  The evening I took all three at the same time was brilliant.

"Oh, oh," was the extent of my commentary that evening.  I did the old nibble-on-crackers routine but in the end opted for that god send, zofran.  Generic zofran, to be precise -- ondansetron. 

That stuff is expensive.  Even though blessed with insurance now, I quiz myself closely before allowing myself to dissolve one under the tongue. 

During the period of time that I was uninsured, roughly a year, I was most worried about being able to afford my medications.  I found that, with some hard work researching drugs, prices and myriad details, there are tolerable alternative choices and affordable price tags.  The amount of cost-cutting that we were able to do was amazing. 

Why, then, cannot the insurance companies do the same?  I have tried hard not to revert to laziness now that my costs are again covered -- and I tell every doctor I see that I want them to please continue that work, as well, to keep costs of medicines, tests, and treatments within the Realm of Reasonable.  Still, convenience, like gravity, tends to win out and there are times I simply don't care about details, lost as I am in the forest of trees.

[That was the confessional moment for today.]

I found a 2008 article about a 12-year-old with cancer and her family.  She relied a great deal on Zofran/ondansetron during her course of chemotherapy but her parents struggled with the price, not covered by insurance for some reason.  It may have been because her need for the drug exceeded the amount considered acceptable by some bean counter, some Seinfeldian Zofran Nazi.  No Zofran for you!  Their outrage was compounded when they discovered the tremendous disparity in pricing among pharmacies.  $502 for 20 pills was the first price they paid.  After shopping around -- something very advisable, sure, but not always practical or possible -- they filled the identical prescription for $32 elsewhere.  The article, by an investigative reporter for Portland's KATU, didn't garner much notice -- perhaps because the news in it was not new or at all pleasant to think about -- but the two comments it did get made me snicker.

That's right, snicker.  Arched lip, one flared nostril, a bad attitude.  The first person related a similar experience of price gouging over Zofran/ondansetron, then ranted about boycotting the pharmacy with the highest price. 

I get pissed off easily at USAmericans.  All the blither and blather about "Obamacare" and the evils of socialism, of the left.  Yet, put someone in a situation that is purely and pristinely (i.e., nonsensically) controlled by the much-vaunted conditions of The Market, and it's Whine Time.  Big Pharma and its underlings are simply charging what The Market will bear. 

What?  Oh.  I see.  That's fine when we're talking about something pharmaceutically elective, like an antidepressant (you know, for the guilt ridden liberal without sufficient character to just will himself out of the clinical blues).  That'll work for the floozy leftist feminist who doubtless relies on a near constant supply of antibiotics to fight her slew of sexually transmitted diseases... but in the case of an emergent situation -- say, the upper-middle-class child with a fever of 105 and a proven-by-culture strep throat?  Well, everyone knows that in that case, the pharmacy and the drug company have no right to profit. 

Is health care a special category in capitalist economic systems?
How about foodstuff?  Fuels?  A public education?  Your Mama?

Within categories, do we distinguish between dramamine and ondansetron, insulin and subsidized wellness center memberships, a respirator for me and a respirator for you?  Should my tax dollars buy your family a bag of apples but not, perhaps, applesauce?  A ValuPak of pre-seasoned, pre-battered formed fish fillets versus 3 pounds of fresh extra jumbo black tiger shrimp?  Shall we foot the bill for advanced placement U.S. history classes but draw the line at world history and ESL? Should physical education and recess be done away with in elementary programs to make time for sex ed and the testing instruments -- as determined by best practices -- that monitor our declining achievement?

The Evil Me wants to scream "caveat emptor" to anyone on the right wing complaining about being gouged by their monthly health insurance premium or by the price of their cholesterol-modifying meds and Viagra.  If we fiscally retarded leftists, dipping our wriggling Birkenstock-bred toes in greeny socialist ponds, have to continue to dress up our concerns in the besotted falsehoods of capitalism... well, I'm just gonna spit

What am I talking about?  I am talking about how change must be made palatable to be made possible, how if I call you a "capitalist tool," that is widely taken as a good thing and not a cutting disparagement.  Our conversations, such as they have been -- our chatter, really -- about race and gender, have had to be held well outside any context of economic or class analysis, no matter how prevalent or instrumental that context.
Liberal idealism marginalized Marxism, dancing from Marx to Weber...

Oh God, now I have a headache.
You, too, no doubt.

It's just that I feel shut out of important conversations because people are afraid of my favorite words, and like I said, now I just wanna spit.

Yeah, so I don't feel so good at the moment and apparently, I am a little bit crabby, too. 

We love the new floors, my wheelchair, especially, and I've softened up as much of the space as I can by the swift purchase of  seven area rugs.  (I find purchasing swiftly reduces some of the pain inherent in such shopping -- much as a duct tape gag needs a fast and merciless yank to avoid excessive discomfort.)  Left to my own devices, I'd have chosen some far out designs and gone wildly into colors.  Knowing that everything had to pass Fred Muster and not be repellent to any living Haddock, however, I ended up with seven woven testaments to all that is neutral, resistant to dirt, and immune to cat piss.

I find some small comfort in the fact that I, alone, am driving the economy.

Yay, me.  Where'd I stash that Zofran? (Only 5 more days of antibiotics.  For my BONES, damn it!  For my bones...)

One more go

I passed the first hurdle to getting in to see The "Special K" Dood, apparently the only reputable doctor administering subanesthetic ketamine (following a reputable protocol, located in a reputable part of town, attached to a très reputable rehab center) in the Tête de Hergé region.

My Go-To-Guy MDVIP doc successfully paved the way with an unctuously smarmy letter of introduction and then bombarded the institute with hundreds of pages of records.

"You want my medical records?  Are you sure?"

Documentation, we have.  In spades.  I am sure the staff at my Go-To-Guy MDVIP doc's place were enamored of moi all the while they fed the fax machine.  I seem to recall big plans for an electronic record...

So now my big date is March 3, 2011.  10:30 am.  I confess to turning down an earlier appointment because I don't want to haul Fred out of bed at the crack of dawn, if I can at all help it.

Now, the surprise.  I've been there before.  It's one of those experiences that I've tried to block out of mind, out of memory.  The name has changed, slightly, and it's under new management, but they are working from the same database that is attached to the rehab institute, so I was already in their system.

It was a time of pure hell.  I was still fogged under from the whole wretched experience of May 2002. (That saga is sketched out in this post:  Nail Changes and Brass Tacks.  If you're a medical type, all you really need to know is that this post bears the tag "Sentinel Event.")

In a twisted effort to protect itself, the hospital kept me from being diagnosed, trying to keep itself from being sued.  So it took going outside of their incestuous referrals to a new neurologist before I got the diagnosis -- he gave the diagnosis immediately, and in response to my "what's that" query, retrieved an illustrated volume on CRPS from his office and let me thumb through the pictures.  Someone had obviously been breaking into Manor Marlinspike in the dead of night and photographing my limbs.  Good thing I now have my 13 ounces of Bear Repellent.

Anyway, I was lucky to meet this neurologist and am now very fond of him.  I see him tomorrow, in fact.  Hopefully, he's bucked up since our last meeting, when he devastated me by weeping. 

After he convinced me and Fred that I did, indeed, have this funky disease CRPS, after he ordered the few and insufficient diagnostic tests available (temp testing, triphasic bone scans, nerve conduction studies), after beginning me on the typical list of meds, he sent me, post haste, to have sympathetic blocks.  *That* is when I first visited the Diabolical Institute.  Sometime in January 2004.

There are those who continue to maintain that sympathetic blocks can be a diagnostic tool.  There are those who swear by them as always appropriate in CRPS, as being, in fact, the crux, the heart, the essence of treatment.

And then, there's me.

Just kidding! 

No, what is upsetting, and, yes, in my world, this is worthy of being upset -- what is upsetting is that some doctors, nurses, and physical therapists cannot wrap their minds around the fact that sympathetically maintained pain (SMP) is not necessarily what is going on within the spectrum of Distressing Things happening to their CRPS patients. 

It is astonishing but I have met doctors who were considered CRPS specialists of sorts whose only intelligent discourse about the disease involves elaborate and redundant references to the sympathetic nervous system.  Almost every one of them loved to wax folksy about how the light switches got flipped but someone forgot to turn them off chuckle chuckle chuckle.


I am sad just thinking how many people were probably told they were nuts because they "flunked" some idiot's idea of a "test" for CRPS -- a sympathetic block to which they "failed" to respond.

The sympathetic nervous system surely is involved in most cases, and maybe always very early on, which provides that brief little window during which blocks can be downright curative -- but that brief little window had long been shut by the time they "needled" me in the winter of 2004.  I find more convincing science and understandable explanations coming from those who posit CRPS as a disease of the central nervous system...  but maybe now is not the time to rehash the issue.  And if that interests you, you probably know the arguments. 

The only thing that matters, really, is that if you have SMP, then you are part of that lucky subset who may well benefit from sympathetic blocks, so please do avail yourself of them by finding an experienced  interventional pain doc -- one who specializes in guided "procedures." 

I'm at the point where I'm a poster child for neurogenic inflammation and edema, so far gone that pushing the reset button won't do squat.  A serious reformat is my only hope!  Wipe the disk!

My experience with sympathetic blocks was unfortunate.  It was too little, too late, and proved to be pure torture.  I had minimal response, that being a very slight change in temperature.  One foot warmed up a little but not enough to impress anyone. 

I was so programmed, at the time, by my optimistic new doctor and by the intense reading I had begun, that I expected a response, and was counting on it.  In reality, that foot warmed up maybe 5-6 degrees then retreated into the icy deep freeze.  In reality, there was no pain relief, but there were significant muscle spasms.

In spite of the evidence in front of my eyes, after each block I became upset when the focused and intense PT sessions that I read about never materialized.  I think that the Resident Chucklehead at the time only managed to secure me some immediate post-block PT... once.  And on that occasion, the physical therapist was overseeing about five people at once, and then had to rush home to her newborn who had a rash, or a fever, or was womicking, or something.  Whatever it was, she left in the middle of my "session."

At my subsequent appointment for the next block -- the schedule was MWF -- I couldn't refrain from asking Resident Chucklehead why we were continuing with the blocks when they weren't working.

He had his back to me, was drawing up meds, and I was prepped, draped, prone.  We were set to begin.  He said, "I don't know.  I guess it doesn't make a lot of sense, does it?"  And then he strode in that chucklehead way to the table, ready to begin.

Hello?  Hello?  The conversation replayed several times in my head as the nurse tried to find a comfortable position for the blood pressure cuff. 

"Um, Resident Chucklehead, sir?  If it's all the same to you, then, I will pass on this block.  I will just head on home..."

I saw him a few more times and we clashed, majorly, over the role of opiates in treating CRPS pain.  It's a dialogue I am equipped to have today, but not then.  Then, all I heard was rejection, abandonment, and condemnation to a world of pain.  Now I know that the issues were not at all large, but really very small:  he was interventional... that's how he made money.  Managing some one's pharmaceuticals was not going to rake in the dough.  A week after leaving him, I found (rather, my Go-To-Guy MDVIP doc found) my current pain management doctor.  He is a physiatrist and so he pursued some interventional stuff early on, with some success in pain from my AVN, but also has no problem managing my use of methadone and percocet. 

He overprescribed during a period of time and I discovered the joy of methadone toxicity, which landed me in ICU three times in three short months.  I have a freaky metabolic system, with non-functioning adrenal glands, which I believe caused my inability to process the dose he wanted me at.  Since that time?  I take at least 33% less medicine than he tells me to... It may be stupid, it may be silly, but I don't ever want to experience being over drugged again.  As it is, I maintain myself on the edge.  I know now that meds are not going to take the pain away and that I shouldn't expect them to.  I get a predictable amount of relief with which I remain cogent and in charge.  Mistress of my domain!

Resident Chucklehead wanted me to stop a fairly high dose of oxycontin "cold turkey." The sick thing is that I did it -- Fred says I did it out of, and with -- spite.  He somehow made sure I got to Go-To-Guy just a few days into the endeavor, who promptly rolled his eyes, declared me Silly, and got me the appointment with Current Pain Dude.

About a year later, Resident Chucklehead became locally infamous for having financially mismanaged his little affairs, and when squeezed out of the practice, stole patient records with the assistance of his brother, the accountant.

Is there a reason why disreputable doctors/nutty health care professionals are so often associated with CRPS?  I am thinking of Jose Ochoa.  I am thinking of the RSD Puzzle Crazed Guy... Dr... H, something.. Dr. Hooshmand!  The guy I almost saw, who wanted to send me home on self-administered ketamine infusions!  The orthopod who said his instructional videos on Qigong were the cure and who then delivered an inspired infomercial before offering a cut rate price on his wares.  The dentist who said that only litigious people get CRPS...

If you've never encountered Dr. Jose Ochoa, The Turd, here's a succinct presentation of his "beliefs," according to which he has lived a good life, raking in the dough as an expert forensic witness in hundreds of workers comp and malpractice cases.  His article, "Truths, errors, and lies around 'reflex sympathetic dystrophy' and 'complex regional pain syndrome,'" was published in 1999 in the Journal of Neurology. My gentlewoman's reserved and austere opinion of The Turd can be found HERE, HERE, and HERE.

The shifting paradigm of reflex sympathetic dystrophy–sympathetically maintained pains–complex regional pain syndrome is characterized by vestigial truths and understandable errors, but also unjustifiable lies. It is true that patients with organically based neuropathic pain harbor unquestionable and physiologically demonstrable evidence of nerve fiber dysfunction leading to a predictable clinical profile with stereotyped temporal evolution. In turn, patients with psychogenic pseudoneuropathy, sustained by conversion-somatization-malingering, not only lack physiological evidence of structural nerve fiber disease but display a characteristically atypical, half-subjective, psychophysical sensory-motor profile. The objective vasomotor signs may have any variety of neurogenic, vasogenic, and psychogenic origins. Neurological differential diagnosis of “neuropathic pain” versus pseudoneuropathy is straight forward provided that stringent requirements of neurological semeiology are not bypassed. Embarrassing conceptual errors explain the assumption that there exists a clinically relevant “sympathetically maintained pain” status. Errors include historical misinterpretation of vasomotor signs in symptomatic body parts, and misconstruing symptomatic relief after “diagnostic” sympathetic blocks, due to lack of consideration of the placebo effect which explains the outcome. It is a lie that sympatholysis may specifically cure patients with unqualified “reflex sympathetic dystrophy.” This was already stated by the father of sympathectomy, René Leriche, more than half a century ago. As extrapolated from observations in animals with gross experimental nerve injury, adducing hypothetical, untestable, secondary central neuron sensitization to explain psychophysical sensory-motor complaints displayed by patients with blatantly absent nerve fiber injury, is not an error, but a lie. While conceptual errors are not only forgivable, but natural to inexact medical science, lies particularly when entrepreneurially inspired are condemnable and call for peer intervention.

With all of these whirling dervishes in play, this disease is a bear to navigate, and sometimes feels like eternal damnation come early.

But I am going to draw myself together one more time, and give it one more go.

April 3, 10:30 am.