Friday, July 15, 2011

The Nod: Affirming the Legitimacy of Libya's TNC

Excellent move:


ISTANBUL (AP) — U.S. Secretary of State Hillary Rodham Clinton says the Obama administration has decided to formally recognize Libya's main opposition group as the country's legitimate government. The move gives foes of Libyan leader Moammar Gadhafi a major financial and credibility boost.



Clinton announced Friday that Washington accepts the Transitional National Council as the legitimate governing authority of the Libyan people. Diplomatic recognition of the council means that the U.S. will be able to fund the opposition with some of the more than $30 billion in Gahdafi-regime assets that are frozen in American banks.

Just perusing the initial reports from various news outlets, it looks like most of the other 32 nation members of the "Contact Group on Libya" have also recognized the legitimacy of the TNC. 
 

Excellent decision...

Thursday, July 14, 2011

Stasis

Well, it looks like I may keep blogging after all.  Your spontaneous cheers of approval warm the cockles of my heart.  Thank you so much (my best Brenda Leigh Johnson impression).

It was an afternoon of misadventures, my favorite kind of afternoon.  I do feel awful, though, for dragging others through these fun times, and by "others," I usually mean Fred.

I had not been to my pain management doctor's office since March -- at which time two things happened:  the PA I had been seeing there quit, and I began the Great Subanesthetic Ketamine Adventure over at the Hospital for Catastrophes.  Each one of these two things engendered other things until I was practically tripping over all that accumulated quiddity.

The PA leaving caused me to question the quality of care I'd been receiving.  It sounds odd, I am sure, but Allison the PA was light years ahead of the doctor of record, in terms of staying abreast of CRPS research and treatment opportunities.  He had begun to depress me.  I would show up every month with questions from what I'd been reading and about what others had told me.  I swear that I was not obnoxious about it, and never dominated his time.  Fred used to time him from the moment of entry to the second he grabbed the door knob in retreat -- and this doctor rarely stayed in the exam room longer than 3 minutes. 

At some point, Dr. PainDood decided that I did not understand my situation.  He began taking my gesticulating hands in his big old dry ones, looking me soulfully in the eye, and saying:  "Prof-de-Rien, there are no more treatments to try... There is nothing that is going to help... We can only manage the pain to the best of our ability."

He's a very handsome man, and he would pause, head held at a flattering angle, long arms and finely tapered fingers extended -- Dr. PainDood loves handshakes, handholding, all things hand.

[I suppose that is preferable to, say, the kisses I used to field from a certain rheumatologist, and it's definitely superior to the tears that always flow from the sweet, sensitive eyes of my neurologist, The Rock.]

I got the same speech, month after month, fighting it, hating it for the first several iterations... then caving, imploding, believing it.  And so it was that nothing ever changed, except for a worsening of CRPS, then the onset of infected prostheses and osteomyelitis, all accompanied by the collapsing joints of avascular necrosis.  Life may not have been anywhere near good, but there was a measure of orderliness to my degradation.  Woo-hoo!  I got worse but my pain management stayed the course;  I got the same medications, at the same strength, month after month, year after year, and it was consistently ineffective.  If I dared raise the specter of change, I got The Speech -- and the Handholding.

There came a visit, about 3 years ago, I think, when the last remnant of rebellion in me reared its faltering head.  What about x, what about y?  Couldn't we give z a go?  And then, poof, Dr. PainDood took back both his hand and his spiel, declared me to be on permanent pharmacological pain management, and turned me over to his Physician's Assistant, Allison.

I thought she was punking me, for sure, the first few times she began the appointment with news from a conference on neuropathic pain, with an update on the research into the inflammatory response, or with the suggestion that we give an old drug a new try at a radically different dose.  Sure, sometimes she pitched ideas that were clearly birthed in left field, but always, always, I knew that she believed that improvement was possible, that improvement was necessary.

Plus, she totally understood that my hands HURT, and so she left them the hell alone!  (You've no idea how much I dreaded Dr. PainDood's obsession with the shaking and holding of hands.  I figured it to be some sort of bizarre challenge to my integrity, a nonverbal inquiry into whether my continuing ed credits from the Emily Post Institute were up-to-date.)

She and I both thought that Ketamine might be my Big Chance, and it was Allison who discovered that there were treatment opportunities right here in Tête de Hergé.

You've probably heard about "contracts" between doctors and patients when it comes to the serious matter of narcotic pain management.  I probably signed one but I don't remember.  The guidelines make sense and I always followed them -- if I get my pain medications from this doctor, then I don't seek pain medication from any other doctor.  I take my meds as prescribed, and I don't sell them or give them to anyone else. 

The only deviant behavior I exhibit is a tendency to not take as much as I am told to take.  That's it.

Since my last appointment with Allison and my first appointment today with her replacement, Maria, I have tapered off of methadone and Percocet, and lived on ibuprofen.  I have been in more pain than I knew was possible.  I did it so that the ketamine infusions would have the best chance possible to work -- you gotta let that stuff antagonize the heck out of those NMDA glial cells, hoo-baby, uh-huh!

Of course, I've pretty much been bed-ridden from pain and sometimes I devolve into Pure Twitch.  Ibuprofen was dissolving my stomach lining, and beginning to mess with my kidneys. 

The only option offered after ketamine failed was to have an intrathecal pump "installed" so as to receive the very toxic, very potent, crazy-making drug Prialt, a synthetic model of a certain sea snail's venom.  Being too close to crazy already, and since my spine is riddled with thousands of micro-fractures already... I declined.

So the catastrophic hospital politely returned me to the care of Dr. PainDood, although they cordially invited me to check in every few months to see what might be blowing in the wind...

It's not like I've been hanging on the street corner these last few months, making drug deals -- at night, traipsing off to raves, clubbing -- life a sudden party.  Still, my welcome back into the bosom of narcotic pain management this afternoon was fraught with suspicion.

Between March and July, where had I been getting my medication?
Did the doctor at the catastrophic hospital prescribe me any pain killers?
Was I sure?
Did I understand the question?
Was I sure?
Did the doctor at the catastrophic hospital prescribe *anything*?
Was I sure?
Did I understand the question?

The idea that a patient would stop taking narcotics on their own just did not compute.  To cheer them up, I told them that I was filled with excitement at the thought of taking opiates again.  "I can hardly wait," I crowed.  "Please, please, return me to the stagnant status quo!"

Okay, so I may have left out that when we showed up this afternoon, they had no record of the appointment.  Did I fail to mention that the new PA, Maria, kindly worked me in, so that we didn't have to make another trip across the wilds of The Lone Alp?  She sorted through a complicated history in an organized way, applauded my reduction of methadone dosage from 40 mg to 10 mg, and...

suggested acupuncture.

Things are back to normal. 

the monks are deep in GOOG

Thank you, Larry Page.     

Thank you, GOOGLE.

It may just be a fleeting thing, this 12.49% after hours hike... But it will keep Marlinspike Manor's Feline Remnant in kibble for another month.

The monks are deep in GOOG, so we're getting ready to jump the orchard wall so as to get to the Cistercian's Celebratory Mass in time for the Second Quarter Earnings Processional -- the best incense wafting is right there at the beginning.    Abbot Truffatore left a garbled message, saying something about "good times" and breaking open the 2010 beaujolais nouveau... 

I'll probably hang out at the monastery after the party, for Compline. I love that haunting lullaby but hate having to make the return trek to The Manor afterward, all alone.  (I don't want to be caught in the back orchard after dark.  Who would?!) Thank God for air-conditioned tunnels and quiet-loving Postulants as escorts.

"May the almighty Lord grant us a quiet night and a perfect end...
and not let today's gain be sucked up by tomorrow's losses."  AMEN

Wednesday Night Suppers


I spent several hot hours this afternoon in a state that seemed simultaneously a part of waking, a part of sleeping, definitely involved in sweating, highly aware of felines, and disgusted by the telephone and its attendant messages.

Having hoofed it to the bathroom upon shaking off all of the above, that was where I screamed a tender "Bye-ay-ay!  Have-ah-ah gooo-oo-d thai-aye-aye-am!" to Fred, who was off to consort with the Militant Lesbian Existential Feminists at their regular Wednesday Night Supper. (I always wonder what Fred actually hears me screaming, since my phrases are sucked up by Marlinspike Hall's intramural echo effects -- It's all those Garderobe Chutes, remember?)

Oh, drat, I didn't quite get that right, did I?  I meant to say: the Militant Lesbian Existential Feminists and The Mousse, she of the indeterminate persuasions.  The Mousse was tagged as The Mousse due to her fondness for the chocolate version of this dessert, the only food [besides a garlic pizza] to ever strike me low with food poisoning.
As it would happen, The Mousse participated in the previously mentioned "several hot hours," horning in on my rest by leaving a long, idiotic, breathless message for Fred, complete with ingratiating references to my various past contributions to these weekly culinary adventures.  In fact, I was planning to get up and cook something fascinating for My Clueless Darling to take... but something, something, something seemed to push me back into my steamy lethargy, lolling about the bed, smushing one incubating hairy feline after another. 

[And when I use "loll," I mean lax, lazy, AND indolent.  Take that, you verbmeisters.]

In an effort to eat cake and ice cream at every possible opportunity, The Mousse strives to celebrate any birthday, inoculation, anniversary, voter registration, first or last drunk, momentous sexual indiscretion, substantial retail discount, and whatever.  It turns out that tonight is Elaine's birthday and Llewellyn-Femme's Fifth Anniversary of Her First Swim With Sharks.  Tiger shark diving season is getting ready to kick off down in the Bahamas, so The Wednesday Supper Gang is also going to lay hands on Llewellyn-Femme -- in a non-Christian (yet inclusive) kind of pseudo-ecumenical militant lesbian existentialist feminist way -- in order to bless and protect her from sharp white teeth and iron jaws during her stints in the cage.

Anyway, so The Mousse opines during her extended whine on my voice mail service that Fred should probably help out by bringing ice cream, which would go nicely with her shark-themed birthday gateau.
I know that everything she says is in code, and when I break it down, I toss and turn and incorporate her ball-breaking bullcrap into a fresh, restless dream.

I was hoping to sort of pull myself back together while Fred is partying down at E-Cong, a vast repast before him on the long folding table, surrounded by women who don't share his spiritual beliefs, and one who wants to jump his bones.

He's not the only guy.  The Church Secretary is a guy.  And sometimes our old friend Sven shows up. 

I am hoping, though, that Sven didn't decide to attend this evening's supper -- because Fred recently decided to take Sven's inventory -- a very rare thing for even-keeled, sweet-hearted Fred.  With a little time, he'll remember that Sven's a friend, even if we've all been pretty weak in the Friend Maintenance category.

It has to do more with Sven's wife, Hazelnut.  She's an honest-to-goodness Minister, having trained in Existentialism at the knobby knees of Rev. R. Lanier Clance, Founder and Minister Emeritus of the First Existentialist Congregation.  Somehow, she learned very little, and over time, has forgotten that.

Anyway, this is not a critique of her sermonizing... but of her vast talent for taking hostages. 

Oh, okay, it's all about her every-sixth Sunday delivery of the same message:  How Christianity Hurted Me (pout::pout::pout).  Her father, damn the man, was a missionary who inflicted the habit of prayer on his children while tending to a lost flock of Native Americans who had the gall to claim pre-existent spirit-oriented lives. 

At some point in her childhood, Hazelnut suffered a severe injury, lost a leg -- She lives in pain.

I think that she has pain as her core.  I think pain is what is going on. 

So Fred is hot under the collar, almost continually, about the feminist inroads being made at E-Cong.  He's at the point where he responds to any challenge by demanding that you ("you" standing in for one Militant Lesbian Existential Feminist) "define your terms." Unfortunately, some internet genius cobbled together a list of 74 different "types" of feminism, a list which Fred declared authoritative and inviolate, and which he promptly committed to memory.

Should you defy authority and, undaunted, offer up a 75th version, Fred will stomp his feet, sputter, and craftily reply: "Yeah?  Well, spell it!"

Sven is blind. 

I am not trying to elicit any particular response by informing you that Sven is blind.  I am simply trying to advance what may appear to be a stalled narrative.  I wish the story could be told without mentioning either Hazelnut's missing leg or Sven's missing eyesight. 

I'd much rather do a commercial for their jazz music -- Sven tickles the ivories, Hazelnut croons;  They're wonderfully good.  Neither is disabled, both are achievers, maybe even overachievers.  That Hazelnut manages to be a full time teacher, pursue her musical ambitions, and serve as a Minister, is downright inspirational.  Sven is equally busy, also holding down a challenging job while serving as the driving force in their jazz career.
I mention their achievements to the Fredster, adding the raising of two fine sons to the list.  I'm hoping that he'll remember that Hazelnut has a right to her opinions, that he really does like and appreciate her, and that Sven is quite capable of critical thought and is no one's captive minion.  

"Yeah?  Well, spell it!"

Fred is so angry at Hazelnut he could just spit.  He tells me that she trashes Christianity, and with glee.  He tells me she is rewriting the history of E-Cong (a large part of which is his own history) and inserting feminism into a perfectly fine stand-alone existential foundation.  The beginnings of this Existential Fellowship were solidly grounded in philosophy and psychology, in personal responsibility, and in caring for one another -- never a simple task.  "No one used the F-word back then!"

I never thought that I would be a sounding board for attacks on feminism, and in my own home, too.  Okay, so, technically, we are just caretakers here, squatters in this vast manor until such time as Captain Haddock and Company resume their  occupancy -- but it feels like home.  I don't think I've ever been so close to an Indentured Domestic Staff before coming to Marlinspike Hall. 

Just the other day, hands on his hips, standing in the middle of the Fragonard Hobby Room, lost in its thinly veiled erotic frills, Fred had something of a hissy fit, and dared to define fair feminism as stuff women do.  So very frustrated with E-Cong and its revisionist historians, he now mistakes gender as the driving force behind feminist thought... an easy mistake to make, but tiresome, too.  The pink tits and ass of Fragonard did not help matters any.  [I'm just sayin'.] 

Yes, yes.  We have waltzed around "what's-wrong-with-calling-it-humanism?" and there's been fervent fomentation of Søren Kierkegaard and philosophical approaches to Christian theologies.  Unfortunately, Hazelnut could be heard, in the background, improvising melody and turning "phallocentrism" and "don't-it-just-beg-the-question-baby?" into pure rhythmic scat.

As a result of  these highminded debates and other equally muddled communications, Fred resigned from the E-Cong Board of Directors, and Sven promptly signed on.  Fred thinks that Hazelnut forced Sven to put himself up for nomination and that his presence signals the beginning of Militant Lesbian Existential Feminism's heyday.

"Yeah, well..."

My patient and compassionate Fred recently decided that Sven would be an Excellent Guy were he just free of Hazelnut.  His reasoning is that Sven doesn't know or have the capacity to navigate this world (being blind from birth and all) and has come to so depend on his wife that he is "clearly" suffering from... Stockholm Syndrome.  That's right, Sven has been held hostage and has come to sympathize with his tormentor, his wife, his partner in song -- Hazelnut the Haggling Hun.

I don't mind listening to most anything Fred has on his mind.  Like everyone, he works things out sometimes by talking things out.  He's very procedural.  He's an incredible writer, very clear, his words pristine in concert with his thought.  His humor will surprise you.  His elegant persuasions sway, his logic is rarely fallacious.

But he isn't budging on this one.  The Fredster fails to progress, his labor stalled. Which would also be fine, even kind of fun to debate, to examine -- but for one unanticipated twist:  Sven needs to be enlightened. That's right, Fred plans to inform his friend that he is being manipulated and hijacked in the worst way.  He plans to soften the blow by reminding Sven that he certainly doesn't deserve this fate, and shouldn't be judged for having subverted his good judgment to Hazelnut's ill-conceived opinions and attitudes.  What with Sven being so handicapped 'n all, no one will judge him harshly for his singular lack of backbone and his inability to agree with Fred over Hazelnut.

I heard a peculiarly soft voice issuing from my gaping maw, and thought:  Uh-oh.  My superior tone was dripping with condescension, equally at ease when among the people as when mingling with my equals.

I was enunciating, in the manner elicited back in my school days by a demonic French prof who would mark cadence by fierce taps on my curly head with a wooden ruler.  Always a bad sign, this patient, sneering enunciation.

Fred promptly made me define my terms.  Feeling kind of antithetical (also nauseated), I proceeded to draw a distinction between being correct and being right.  As in, he may be correct, but I am clearly right.  Miss Marmy Fluffy Butt, my Debate Coach, nodded her approbation.

And so I cling to my rightness.  He has no business saying anything of the sort to Sven.  "Sven, my friend, your whole life is but a regurgitation of your wife's bullshit... It's called the Stockholm Syndrome... It's a psychological paradox and I just thought you oughta know that you haven't had an idea to call your own in over 20 years... But I wanna reiterate that you couldn't help it, you're blind as a freaking bat!"

I don't think Fred heard any of my reasons to shut-the-hell-up-about-the-silly-stockholm-syndrome but I think I saw a flicker of something in his eyes when I said:  "Well, at least promise me that if you say this awful thing to him, that you will stand by him as a friend after it is said.  You have a responsibility to do so..."  It was probably a trick of lighting.

Who would have thought that these Wednesday night "church" suppers had so much at stake?  Jealousies of all sorts, machinations worthy of Machiavelli, insincerity as an art form, suffering bodies, suffering minds, troubled souls. 

I guess I can decide not to give a crap about The Mousse.  Given the Sven, Fred, and Hazelnut Triad, she just doesn't measure up as a worry or concern.  She's a simple annoyance. Just try and jump his bones, you dessert-driven nagging harpy, I don't care.  Whose Manor does he come home to, hmmm?

I'm up in the Computer Turret at the moment (obviously, huh?!) and it looks like Ruby the Honda CRV is coming down the road, throwing up dust and scaring our herd of Square Island Buffalo. Yep, that's her, weaving and dodging those giant hooves.  Unfortunately, La Bonne et Belle Bianca Castafiore pulled up the drawbridge when she came home from rehersals earlier --  he's gonna have to leave Ruby to crank it back down...

What the... ?

Even from here, it's clear that Fred has the mother of all black eyes and two (maybe three) fingers in a splint.  And I am not sure, but I think he is GURGLING.

Bless his heart.

I think I'll just sleep up here tonight.

Tuesday, July 12, 2011

Recent CRPS Research

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I'm not feeling much like blogging these days, being about as busy as a body can be hosting Tête de Hergé's most anticipated Pity Party of the 2011 season.  Nonetheless, having run across some interesting newly published research, I did some wicked-fast copying and pasting, cogitating and perusing, and hope that you will find some of this CRPS work helpful and interesting.  I confess to having focused on aspects of this Sucky Disorder that are posing a challenge and raising questions in my life at present:  sensory dysfunction, disorder of body schema, hemilateral sensory disturbances, dystonia, and -- what the heck! -- ketamine induced liver injury!

There is some comfort in noting the many articles and topics being published and discussed -- just not enough comfort to warrant ending the Pity Party.  Maybe come August.  (Actually, ManorFest is about a week away, at which time my rabid navel-gazing will no longer be tolerated around here.  Already, people are strumming their fingers and rolling their eyes at my wailing and cultivated introspection.  I saw a preliminary ManorFest schedule in which I am relegated to working night shifts, exclusively, far from the public eye.  Harrumph.)

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Title
Comparable disorder of the body schema in patients with complex regional pain syndrome (CRPS) and phantom pain.

Author(s)
Reinersmann A, Haarmeyer GS, Blankenburg M, Frettlöh J, Krumova EK, Ocklenburg S, Maier C

Institution
Abteilung für Schmerztherapie, Berufsgenossenschaftliches Universitätsklinikum Bergmannsheil GmbH Bochum, Ruhr-Universität Bochum, Bochum, Deutschland, annika.reinersmann@rub.de.

Source
Schmerz 2011 Jul 9.

Abstract
In patients with complex regional pain syndrome (CRPS) a disruption of the body schema has been shown in an altered cortical representation of the hand and in delayed reaction times (RT) in the hand laterality recognition task. However, the role of attentional processes or the effect of isolated limb laterality training has not yet been clarified.The performance of healthy subjects (n=38), CRPS patients (n=12) and phantom limb pain (PLP) patients (n=12) in a test battery of attentional performance (TAP) and in a limb laterality recognition task was compared and the effect of limb laterality training in CRPS patients and healthy subjects evaluated.The RTs of both CRPS and PLP patients were significantly slower than those of healthy subjects despite normal TAP values. The CRPS and PLP patients showed bilaterally delayed RTs. Through training RTs improved significantly but the RTs of CRPS patients remained slower than those of healthy subjects. In this study an equal disruption of the body schema was found in both CRPS and PLP patients which cannot be accounted for by attentional processes. For CRPS patients this disorder cannot be fully reversed by isolated limb laterality recognition training.

Language
GER

PubMed ID
21739258


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Title
Impaired Hand Size Estimation in CRPS.

Author(s)
Peltz E, Seifert F, Lanz S, Müller R, Maihöfner C

Institution
Department of Neurology, University of Erlangen-Nuremberg, Erlangen, Germany.

Source
J Pain 2011 Jul 7.

Abstract
A triad of clinical symptoms, ie, autonomic, motor and sensory dysfunctions, characterizes complex regional pain syndromes (CRPS). Sensory dysfunction comprises sensory loss or spontaneous and stimulus-evoked pain. Furthermore, a disturbance in the body schema may occur. In the present study, patients with CRPS of the upper extremity and healthy controls estimated their hand sizes on the basis of expanded or compressed schematic drawings of hands. In patients with CRPS we found an impairment in accurate hand size estimation; patients estimated their own CRPS-affected hand to be larger than it actually was when measured objectively. Moreover, overestimation correlated significantly with disease duration, neglect score, and increase of two-point-discrimination-thresholds (TPDT) compared to the unaffected hand and to control subjects' estimations. In line with previous functional imaging studies in CRPS patients demonstrating changes in central somatotopic maps, we suggest an involvement of the central nervous system in this disruption of the body schema. Potential cortical areas may be the primary somatosensory and posterior parietal cortices, which have been proposed to play a critical role in integrating visuospatial information. PERSPECTIVE: CRPS patients perceive their affected hand to be bigger than it is. The magnitude of this overestimation correlates with disease duration, decreased tactile thresholds, and neglect-score. Suggesting a disrupted body schema as the source of this impairment, our findings corroborate the current assumption of a CNS involvement in CRPS.

PubMed ID
21741321

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Title
The Specificity and Mechanisms of Hemilateral Sensory Disturbances in Complex Regional Pain Syndrome.

Author(s)
Knudsen L, Finch PM, Drummond PD

Institution
School of Psychology, Murdoch University, Perth, Western Australia.

Source
J Pain 2011 Jun 22.

Abstract
Hyperalgesia often extends from the affected limb to the ipsilateral forehead in patients with complex regional pain syndrome (CRPS). To investigate whether this is more common in CRPS than other chronic pain conditions, pressure-pain thresholds and sharpness to a firm bristle were assessed on each side of the forehead, at the pain site, and at an equivalent site on the contralateral side in 32 patients with chronic pain other than CRPS (neuropathic or nociceptive limb pain, radicular pain with referral to a lower limb or postherpetic neuralgia), and in 34 patients with CRPS. Ipsilateral forehead hyperalgesia to pressure pain was detected in 59% of CRPS patients compared with only 13% of patients with other forms of chronic pain. Immersion of the CRPS-affected limb in painfully cold water increased forehead sensitivity to pressure, especially ipsilaterally, whereas painful stimulation of the healthy limb reduced forehead sensitivity to pressure pain (albeit less efficiently than in healthy controls). In addition, auditory discomfort and increases in pain in the CRPS-affected limb were greater after acoustic startle to the ear on the affected than unaffected side. These findings indicate that generalized and hemilateral pain control mechanisms are disrupted in CRPS, and that multisensory integrative processes may be compromised. PERSPECTIVE: The findings suggest that hemilateral hyperalgesia is specific to CRPS, which could be diagnostically important. Disruptions in pain-control mechanisms were associated with the development of hyperalgesia at sites remote from the CRPS limb. Addressing these mechanisms could potentially deter widespread hyperalgesia in CRPS.

PubMed ID
21703937

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Title
Fixed Dystonia in Complex Regional Pain Syndrome: a Descriptive and Computational Modeling Approach.

Author(s)
Munts AG, Mugge W, Meurs TS, Schouten AC, Marinus J, Moseley GL, van der Helm FC, van Hilten JJ

Source
BMC Neurol 2011 May 24; 11(1):53.

ABSTRACT:
BACKGROUND: Complex regional pain syndrome (CRPS) may occur after trauma, usually to one limb, and is characterized by pain and disturbed blood flow, temperature regulation and motor control. Approximately 25% of cases develop fixed dystonia. Involvement of dysfunctional GABAergic interneurons has been suggested, however the mechanisms that underpin fixed dystonia are still unknown. We hypothesized that dystonia could be the result of aberrant proprioceptive reflex strengths of position, velocity or force feedback.
METHODS: We systematically characterized the pattern of dystonia in 85 CRPS-patients with dystonia according to the posture held at each joint of the affected limb. We compared the patterns with a neuromuscular computer model simulating aberrations of proprioceptive reflexes. The computer model consists of an antagonistic muscle pair with explicit contributions of the musculotendinous system and reflex pathways originating from muscle spindles and Golgi tendon organs, with time delays reflective of neural latencies. Three scenarios were simulated with the model: (i) increased reflex sensitivity (increased sensitivity of the agonistic and antagonistic reflex loops); (ii) imbalanced reflex sensitivity (increased sensitivity of the agonistic reflex loop); (iii) imbalanced reflex offset (an offset to the reflex output of the agonistic proprioceptors).
RESULTS: For the arm, fixed postures were present in 123 arms of 77 patients. The dominant pattern involved flexion of the fingers (116/123), the wrists (41/123) and elbows (38/123). For the leg, fixed postures were present in 114 legs of 77 patients. The dominant pattern was plantar flexion of the toes (55/114 legs), plantar flexion and inversion of the ankle (73/114) and flexion of the knee (55/114). Only the computer simulations of imbalanced reflex sensitivity to muscle force from Golgi tendon organs caused patterns that closely resembled the observed patient characteristics. In parallel experiments using robot manipulators we have shown that patients with dystonia were less able to adapt their force feedback strength.
CONCLUSIONS: Findings derived from a neuromuscular model suggest that aberrant force feedback regulation from Golgi tendon organs involving an inhibitory interneuron may underpin the typical fixed flexion postures in CRPS patients with dystonia.

PubMed ID
21609429

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Title
Drug-induced liver injury following a repeated course of ketamine treatment for chronic pain in CRPS type 1 patients: A report of 3 cases.

Author(s)
Noppers IM, Niesters M, Aarts LP, Bauer MC, Drewes AM, Dahan A, Sarton EY

Institution
Department of Anesthesiology, Leiden University Medical Center, Leiden, The Netherlands.

Source
Pain 2011 May 3.

Abstract
Studies on the efficacy of ketamine in the treatment of chronic pain indicate that prolonged or repetitive infusions are required to ensure prolonged pain relief. Few studies address ketamine-induced toxicity. Here we present data on the occurrence of ketamine-induced liver injury during repeated administrations of S(+)-ketamine for treatment of chronic pain in patients with complex regional pain syndrome type 1 as part of a larger study exploring possible time frames for ketamine re-administration. Six patients were scheduled to receive 2 continuous intravenous 100-hour S(+)-ketamine infusions (infusion rate 10-20mg/h) separated by 16days. Three of these patients developed hepatotoxicity. Patient A, a 65-year-old woman, developed an itching rash and fever during her second exposure. Blood tests revealed elevated liver enzymes (alanine transaminase, alkaline phosphatase, aspartate transaminase, and γ-glutamyl transferase, all⩾3 times the upper limit of normal) and modestly increased eosinophilic leukocytes. Patient E, a 48-year-old woman, developed elevated liver enzymes of similar pattern as Patient A during her second ketamine administration and a weakly positive response to antinuclear antibodies. In a third patient, Patient F, a 46-year-old man, elevated liver enzymes (alanine transaminase and γ-glutamyl transferase) were detected on the first day of his second exposure. In all patients, the ketamine infusion was promptly terminated and the liver enzymes slowly returned to reference values within 2months. Our data suggest an increased risk for development of ketamine-induced liver injury when the infusion is prolonged and/or repeated within a short time frame. Regular measurements of liver function are therefore required during such treatments. During repeated ketamine infusion for treatment of CRPS1, three patients developed liver injury probably allergic in nature.

PubMed ID
21546160

Sunday, July 3, 2011

Astounding Prescience

You have to admit that, on occasion, I can be astonishingly prescient.  I feel one of those instances coming on...

Today, at long last, we will hear the closing arguments in the Casey Anthony trial.  I predict it will go thusly:

PROSECUTION:  She did it!
DEFENSE:  No, she didn't!  You did!

I'm not stopping there.  The scuffed, worn, slippery grass of Wimbledon calls, you know.  ("Wimpleton," as the locals designate this annual Holy Tourney.)

Nadal will win. 

I won't even hedge by saying that were Djokovic to win -- in fine fashion, that is -- I'd also be thrilled.  It's gonna be a great match.

I'd say it's been an awesome weekend for my sporting interests, except that Tito Ortiz managed to knock out Bader in the first round.  On the upside -- Chris Leben has TOTALLY rehabilitated himself in my eyes, and Wanderlei Silva needs to do some thinking.  (I contend that he is the animated, ripped version of Homer Simpson.)  Congratulations, Chris. 

Leben was transferred to my good side when he took on Yoshihiro Akiyama with short notice and good humor, then submitted him with 30 seconds left on the clock.

I failed to note yesterday's instance of prescience in this blog, having been distracted by scream-inducing spastic legs and yet another puncture of said legs by one Buddy the Kitten. 

But you can trust me.

I called Sharapova's loss way-y-y ahead of time, based on my extreme disappointment in her semi-final match, a match that might as well have been played in the first round of some country club tourney.  In Antarctica (South Sandwich territories...).



None of that, though, impugns the accomplishments of Petra Kvitova: Kde je vlakové nádraží?!

Lastly, a bit of non-prescience for you:  Last year, or the year before, I cannot differentiate -- I wrote a post that included a discussion of women's tennis underwear.  The number of hits that post receives at this time of year is astounding.  Top searches include "tennis undies," "venus williams ass" and "serena williams cat suit." Also, somewhat inexplicably, given her [second] retirement in January:  "justine henin's boobs."

Okay, so now you know exactly what I know.

Uh-oh.

Saturday, July 2, 2011

Yay, Us!

Has this happened to you yet? 

A little background:  My blood "family" is... dilute.  I guess not having to worry overly much about the longterm effects of inbreeding or scoliosis brought on by excessive receipt of hugs is a good thing.  My brother and I have dedicated our existence to not reproducing, to ending our role in this nonsense with the final beat of our hearts. 

Oh hell, now I need to proffer even more background.  When I say "my brother," I am referring to Grader Boob.  We grew up together.  Or tried!  He's a Brainiac and something of a Recluse, though he claims to have taught and pummelled into maturity a generation or so of serial Freshmen and Sophomores at one of the South's finest public universities.  You can't do that and be reclusive.

Also, he *might* be Richard Russo.

I have another full-blooded brother -- if, that is, "full-blooded" means a brother with whom one shares parentage.  Entire parentage.  We *think*.  Anyway, he has a professional moniker, too.  His is Tumbleweed, or TW.  A far cry from Howie.  [Oops.]  We thought for years that he might actually be Jerry Garcia but then a professionally analyzed photograph of the two of them in the same place and time (Berkeley Greek Theater, 1983), pretty much ended that wild bit of speculation. 

Unbeknownst to one another, Tumbleweed and I were also simultaneous and contemporaneous "Derelicts and Delinquents Plagu[ing] Durant Avenue" -- back in the 80s, again (a potent curse).

TW had the intelligence -- the brainiac gene is strong in the males of our clan -- to leave the family unit early.  Of course, this meant finding food in garbage cans, sleeping under the stars and, I dunno, maybe around some nasty, mean people, including a paranoid ex-Company Man who had the annoying habit of discharging his firearm into other peoples' highly vascularized spleens.  But it also meant following The Dead, loving the Canyon, learning the River, and forging a good life as a good man. 

The only thing that I wish all three of us had made clear [limpide comme du cristal] with each other before Pod Separation was the whole anti-procreation stance.  Because TW, ever the optimist, went and had a child -- who has had a child, herself.  He's a Grandpa!  I know the name of his daughter and granddaughter but force myself to forget them.  We will never meet.  [Oops.  Gloom and Doom got past the Manor Sentries, along with violent, horrid, scream-inducing spasms in my legs. Apologies from Management.]

It's a natural turn in the bend to go from familial intricacies to the Anthony family down Orlando way. 
In my daily email to a woman I have come to love in the way I imagine one loves a sister, I blurted a telling blurt this afternoon. This Virtual Sibling and I have become engrossed by The Very Weird Casey Anthony Trial, though we seem to interpret testimony, facial expressions, body language, and sociopathy in divergent ways.  [More on sisters, half and step, a few inches down] 

kept the tv on and watched the trial every time i took a break... lordy, lordy, lordy. you know... my family is/was dysfunctional but i am slightly cheered to think that we never murdered anyone, or covered up major crimes. we had loads of denial, silence, repression, enabling, and our share of abuse. but we never murdered anyone.   yay, us!
Yeah, so, there were three in the original litter.  TW, Grader Boob, and me, "the chirp" (a phrase from Joni Mitchell's Miles of Aisles, her designation for her role in The Band -- in her case, L.A. Express, back during the Court and Spark tour).  I think TW had some musician in him, God only knows from where, and music is a huge part of each of our lives, but a band, we are not.  Oh, and as further evidence of the brainiac potential being limited to the Y chromosome, I took up the violin as part of my rehab after my first shoulder replacement (of six or seven).  Fred has a fair number of guitars and a keyboard.  Marmy Fluffy Butt plays a mean harmonica despite a pronounced pathological overbite, a drool issue, and a cute little receding whiskered chin. 




Right.  An unexpected musical interlude.  Ah-h-h.  Consider the past blasted.

So, the second litter of the Mother-Unit, my technical half-siblings, includes one Hilmi and one Lale, both wonderful people who have both bravely reproduced what sound like fine Planetary Citizens, and again, there's been no inbreeding, no obvious defect in the genetic machinery.  And yes, their boys are all brainiacs: Young John, Hilmi's offspring, is a regular Einstein / Schweitzer Albert Combo (At age 6, he raised money to buy shoes for 94 Thai Tots, something he will never be able to live down);  Lale's son Adrean is clearly destined for fame, wheeling and dealing, working relationships, sensing the synergies, working them... Should these nephews, but a year apart in age, decide to combine their talents one day, the world shall be their oyster.*

*"The world is the mollusc of your choice." Pterry, Discworld, passim.
*"The world is your oyster" is a quote from Shakespeare's The Merry Wives of Windsor




Falstaff: I will not lend thee a penny.
Pistol: Why then the world's mine oyster, Which I with sword will open.
Falstaff: Not a penny.
The original implication of the phrase is that Pistol is going to use violent means (sword) to steal his fortune (the pearl on finds in an oyster).  We inherit the phrase without the original violent connotation to mean that the world is ours to enjoy. -- gbuttters

The Mother-Unit had the second litter with her second husband, a beautiful, lovely and unlikely man, Necip. [It bears mentioning, as he is gone now, and much missed.  One of these summer days, you and I will have to repair to the Computer Turret with a pitcher of gin and tonic, and I will tell you the tale of the Turkish obstetrician/gynecologist who was one of the official physicians to the United States Olympic Boxing Team... It's a good'un, as tales go.]
 
On what I guess would be the other side of the tracks, Grader Boob and I, the chirp, hooked up with some step-parentage who brought along offspring and bad memories of her own.  Specifically, I was gifted with an older sister, whom we called Brute -- because she was anything but.  Seriously, she had hands you could see through.  She squealed, ducked, and put her mitt over head at the sound of bat meeting ball -- and she was always carefully positioned in what was known as Far Far Outfield, as in "a little farther, a little farther... that's good!"
 
Now... Brute had a son, but from what I hear, he escaped the Curse of the Brainiacs.  But that would figure, because he has no blood relationship with The Brood.  I am sure he is talented at something, and is likely a handsome guy -- but I just haven't heard.  Actually, I blame the sperm donor.  Brute deserved a Prince, a Peach, A Pear, but she, too, was smitten with the need to leave and so married the first biped that came along. 

Brute learned and now, if I put ear to ground, there are rumors of some guy named, wonderfully enough, Joe.  The info on Joe is pleasing...
 
Since blood relationships turned out to be meaningless to me, in any real way, I hope you can understand that I sometimes get confused.
 
I try to eke out some line of inherited relationship, I ache for commonalities that might be a sign of God, that sort of thing.
 
Hell, I had to look up the difference between cousin and nephew a few minutes ago.
 
So... as I was pondering a long overdue email I was writing to my half-sister Lale, I got lost trying to remember the name of Hilmi's wife (I think his second, I am not sure.).  I like her.  We've corresponded, she's a smart, funny, and snarky lady -- and I was frustrated by my brain's lack of cooperation.  Anyway, she has RA and I seemed to remember that it was kind of kicking her butt last I heard, but damn, I couldn't get her name from the tip of my tongue to my dancing fingers.
 
Then I remembered that I had subscribed to a feed of her blog three or four years ago -- a blog that I had stumbled upon in the self-indulgent confusion that is Facebook.  I had not read it since -- not because she doesn't write well or it was not interesting (she does and it is) but because I just forgot.
 
So I waltzed over to my Google Reader and scanned down the bazillion things to which I am subscribed.
I marvel that there have been only ten entries since last I looked at it, but give it a few clicks -- got to get her name, that name, arg!
 
Tina.
 
And I see that she wrote something just six days ago.
 
As I was making a cup of coffee this morning, I don't know if it's the combination of a summer morning and the smell of coffee, but I was instantly transported (mentally) to my grandpa's house at the beach.


I don't think that anyone really knows how much I think about living at the beach. When I say "the beach", I mean Oak Island. That's the beach that my family has gone to since I was an infant (around 6 weeks old). It's the beach that I took my son to visit when he was 6 weeks old - kind of like a "sand baptism"! Every time I'm on my way to visit my grandpa, and I get to the bridge leading to OI, I feel like I'm HOME. I have lived in the same county my whole life, but the beach feels like HOME. Even as I type this, I can feel that feeling I get when I'm driving over the bridge and looking at the Intracoastal Waterway on either side of me. Even in the dead of winter, I get that same feeling so I know it's not just the need of vacation.


It hit me this morning, as I was making my cup of coffee, that YES I WILL eventually live at the beach. This is one dream that I will not give up! I've given up a lot of dreams along the way...whether they were just dreams I had as a child that I outgrew, or if they were dreams that I had to re-evaluate because of RA. My desire to live at the ocean is still there. It has only gotten stronger.
And I feel like I've stumbled onto something beautiful, someone beautiful, but also into a moment I was not meant to witness.  A sister's secret life. 

I love what she wants for herself and feel a thickening of this "family"'s thin blood, hear the need, the want, revel in the certainty.  I look politely in the other direction and let the words blur.

I finish writing to Lale.

I erase "So what's shakin' with Hilmi's wife, John's mother?" (showing off my mastery of kinship terms) and I ask, instead, "How is Tina?" 

I say, "Please say 'Hello' to her for me" and I hear the sound of water lapping, feel the ease of warmth on pained muscles, swollen joints, see her bloodline, an old Hilmi launching a boat, an adult John lifting a window to let in the breeze. 


Oak Island Nature Center




Wednesday, June 29, 2011

CRPS Clinical Trials Open as of June 2011



By open clinical trials, I mean that either recruitment has not yet begun or is ongoing.  The U.S. National Institutes of Health listings presently contain 17 such trials:

1.  The Effect of Vitamin C on Preventing Complex Regional Pain Syndrome (CRPS Type I) Following Ankle Fracture
ClinicalTrials.gov Identifier: NCT01338129
Location:  Rabin Medical Center, Petah Tikva, Israel

2.  Graded Exposure (GEXP) in Vivo Versus Physiotherapy in Complex Regional Pain Syndrome Type I (CRPS-I)
ClinicalTrials.gov Identifier: NCT00625976
Responsible Party: Dr. M. Goossens, Maastricht University, Maastricht, The Netherlands
 
3.  Pain Exposure Physical Therapy (PEPT) Versus CBO in Patients With Complex Regional Pain Syndrome Type I (CRPS-1) (PEPTOC)
ClinicalTrials.gov Identifier: NCT00817128
Study Sponsor: Radboud University, Nijmegen, The Netherlands 
 
4.  Study of Proteins Associated With Complex Regional Pain Syndrome
ClinicalTrials.gov Identifier:  NCT00033969
Location:  National Institutes of Health Clinical Center, 9000 Rockville Pike, Bethesda, Maryland, United States, 20892
 
5.  Intravenous Immunoglobulins in Complex-regional Pain Syndrome (PAINLESS)
ClinicalTrials.gov Identifier:  NCT00949065
Responsible Party:  Franz Blaes, MD, Dept. of Neurology, Justus-Liebig-University, Am Steg 14, 35392 Giessen, Germany
franz.blaes@neuro.med.uni-giessen.de
 
6.  Neurotropin to Treat Chronic Neuropathic Pain
ClinicalTrials.gov Identifier: NCT00006289
Location:  National Institutes of Health Clinical Center, 9000 Rockville Pike, Bethesda, Maryland, United States, 20892
Sponsor:  National Institute of Nursing Research

7.  Use of Compression Glove to Prevent Complications After Distal Radius Fractures: a Randomized Controlled Trial
ClinicalTrials.gov Identifier: NCT01118715
Responsible Party: Michael Shuler, MD, J&M Shuler, Inc.
706-424-8438

msimmss@hotmail.com

8.  Analysis of Photoplethysmographic Signal in Lumbar Sympathetic Block (park001)
ClinicalTrials.gov Identifier: NCT01134289
Location/Contact:  Department of Anesthesiology and Pain Medicine, Seoul National University Hospital,
Seoul, Republic of Korea, 110744
Soo Young Park, MD 82-2-2072-0881 soo02@snu.ac.kr

9.  Peer Mentorship: An Intervention To Promote Effective Pain Self-Management In Adolescents
ClinicalTrials.gov Identifier:  NCT01118988
Responsible Party:  Lonnie K. Zeltzer, MD/Professor, Director of UCLA Pediatric Pain Program, UCLA Department of Pediatrics
Contacts:  Lonnie K Zeltzer, MD 310-825-0731  LZeltzer@mednet.ucla.edu
Jennie CI Tsao, Ph.D.  310-825-0731  JTsao@mednet.ucla.edu

10. Evaluation and Diagnosis of People With Pain and Fatigue Syndromes
ClinicalTrials.gov Identifier:  NCT00677157
Sponsor:  National Institute of Nursing Research (NINR)
Contact: Patient Recruitment and Public Liaison Office (800) 411-1222  prpl@mail.cc.nih.gov

11.  Regional Anesthesia Military Battlefield Pain Outcomes Study (RAMBPOS)
ClinicalTrials.gov Identifier: NCT00431847
Contact: Yolanda S Williams, MPH
(215) 823-5800 ext 2774
yolanda.williams5@va.gov
Contact: Holly Luu, BA
(215) 823-5800 ext 6506
holly.luu@va.gov
Sponsored by the Dept of Ver
Principal Investigator:  Rollin McCulloch Gallagher, MD MPH, Pain Management Service
LOCATIONS:
Locations

United States, District of Columbia
Walter Reed Army Medical Center
Washington, District of Columbia, United States, 20307
Contact: Lt. Col. Chester C Buckenmaier III, MD 202-782-7652

United States, Maryland
National Naval Medical Center
Bethesda, Maryland, United States, 20889
Contact: LCDR Michael Kent, MD 202-782-0917

United States, Pennsylvania
Pain Management Service
Philadelphia, Pennsylvania, United States, 19104
Contact: Lynn A Watson (215) 823-5800 ext 6023 lynn.watson@va.gov
Contact: Yvette Roberts (215) 823-5800 ext 6020 yvette.roberts@va.gov
Principal Investigator: Rollin McCulloch Gallagher, MD MPH
Sub-Investigator: Joan S Thomas
Sub-Investigator: Holly Luu, BA
Sub-Investigator: Yolanda S Williams, MPH

United States, Texas
US Army Institute of Surgical Research/Brooke Army Medical Center
Fort Sam Houston, Texas, United States, 78234
Contact: Cpt. Laura McGhee, PhD 210-916-5482

12.  Susceptibility to Chronic Post-Traumatic Extremity Pain
ClinicalTrials.gov Identifier: NCT00672711
Contact: Cecile Pestano, RN
248-964-3440
cpestano@beaumont.edu
Contact: Nickole Carlson, RN
248-898-1907
NCarlson@beaumont.edu
Responsible Party:  Craig T. Hartrick,MD, William Beaumont Hospital (Royal Oak, Michigan)
Phone: 248-898-1907



13.  Efficacy of Etoricoxib on Peripheral Hyperalgesia 
ClinicalTrials.gov Identifier: NCT01088256
Responsible party/Contact: Dr. Christoph Maier  +49/234/3026366  christoph.maier@rub.de
Ruhr University of Bochum, Germany

14.  Adenosine Activity in Producing Venoarteriolar Reflexes
ClinicalTrials.gov Identifier: NCT01280071
Location: Tel-Aviv Sourasky Medical Center, Israel
Contact: Lior Dayan, MD
972504051014
liordayan.3105@gmail.com

15.  Transcranial Magnetic Stimulation (TMS) Effects on Pain Perception
ClinicalTrials.gov Identifier: NCT00349050
Responsible Party:  Jeffrey J. Borckardt, Ph.D., Associate Professor, Department of Psychiatry and Behavioral Sciences, Department of Anesthesiology and Perioperative Medicine, Medical University of South Carolina (Charleston)
(843)867-5142

borckard@musc.edu

16.  Dupuytren's Disease and Extracorporeal Shockwave Therapy (DupuyShock-2010)
ClinicalTrials.gov Identifier: NCT01184586
Location:  Hannover Medical School, Plastic, Hand and Reconstructive Surgery, Hannover, Germany, 30625

Contact: Karsten Knobloch, MD
0049511532 ext 8864
knobloch.karsten@mh-hannover.de

Contact: Marie Kuehn
0049511532 ext 8864
Marie.Kuehn@stud.mh-hannover.de

17.  Effects of Vaporized Marijuana on Neuropathic Pain
ClinicalTrials.gov Identifier: NCT01037088
Contact: Haylee E. Donaghe, MS

916-734-2935
hedonaghe@ucdavis.edu
Principal Investigator:  Barth L Wilsey, MD  University of California, Davis








Sunday, June 26, 2011

LINDSEY J. BAUM: Two Years Missing



Around 9:15 pm on June 26, 2009 Lindsey J. Baum, an 11-year old from the tiny town of McCleary, Washington, disappeared while walking from a friend's house to her home, only four short blocks away.

She's now 13.  Her birthday is coming up on July 7.

The physical changes a young girl experiences in that particular span of ages are sure to have greatly altered her appearance.

It feels foolish to continue noting that, on June 26, 2009, Lindsey was 4-foot 9-inches tall, weighed 80 pounds, her brown hair and brown eyes offset by a hooded pullover.

Still, there are things about the face that never change. Those eyes, that mouth, the smile. Face shape, feature spacing and scale. Age-invariant characteristics. Forensic artists (and the software they use) factor in the ways a person has changed in the past, even as short a past as Lindsey's, and how relatives have aged, as well as extrapolations based on large amounts of data from the wider population.

It is reported that Lindsey has a scar over her left eye, a dark brown birthmark on her right wrist and colored fillings in some of her teeth.

But she's doubtless no longer 4'9" and not likely to still weigh 80 pounds. Twelve to thirteen year old girls average 60-63 inches in height and 95-105 pounds in weight. Of course, her numbers at age 10 were already higher in each category than the average.



That summer evening two years ago, Lindsey had just argued with her brother, but most everyone notes that she wasn't storming off mad. She didn't have the accoutrements you think required of a modern runaway -- no money, no cell phone, no change of clothes.

Some friends set out with her, so she was accompanied for a while before they peeled off to go to their own homes for dinner, or homework, a bath or shower, whatever.

Two of those four blocks are reported to be somewhat industrial -- though we are talking *rural* small town. One block away is access to a major highway.

As any child would be, Lindsey was troubled by her parents' recent divorce. Her father lived in Tennessee. He was deployed to Iraq not long after she went missing.  Her mother and brother no longer live in McCleary.  Life for them has been hard and cruel.

The last time I checked, a reward of $30,000 is being offered by Crimestoppers and the National
Center for Missing and Exploited Children. 

There have been many searches, search warrants, several people of interest -- but no signs of Lindsey, and no real clues or advances in the case.  Still, we all still shake our heads and mutter that someone, somewhere, knows something.  What will it take for that someone to tell that something, and will it bring the child home?

If you have any information regarding Lindsey Baum,
please call the Grays Harbor County Sheriff's Office
at 866-915-8299 [Tip Hotline].

NATIONAL CENTER FOR MISSING & EXPLOITED CHILDREN

1-800-843-5678 (1-800-THE-LOST)

McCleary Police Department (Washington) 1-360-533-8765

Or simply call 911.

Saturday, June 25, 2011

::keeling::

The last little greasy drop of Ketamine hit my pickled brain at about noon on Thursday.

The doctor jacked up the dosage on the last three infusions, which was a surprise.  They were challenging.  In the middle of each one, I lost my way:  I did not know who I was, exactly, or where, and definitely was clueless as to the "why" of things.

Every stray thought promises profundity, begs to be preserved for sober discussions.  Within five minutes of shutting off the drug, that self-importance also drains away. 

No one really cares that the ceiling tiles turned into roses or that pain should be compacted and balled up like so much tin foil, then stuffed in a can.  Apparently, I pretty much did a power point presentation of my Pain Ball theorem.  Somewhere in there, I decided that "I don't matter," which was not such a bad thing to learn.

I learned that Ketamine causes Nanci Griffith to sound like The Chipmunks on nitrous oxide, but that Mary Black was well suited to it, even enhanced.  Nina Simone ruled.

Although changes can still occur post-infusion, it's clear that Ketamine, even given under the Schwartzman protocol, doesn't help me.  Plus, I've come away with a symptom that has been greatly aggravated by the treatments -- awful and distressing spasticity in my left leg, primarily.  When in full force, I scream as my foot bends upward, causing unseen red hot stressors all the way to my hamstring.

The "up" side is equally simple:  I have psychological relief for having tried, for having risked it, no matter the outcome;  I also have learned a few things about communication.

I cannot help but wonder how different my life would have turned out had Ketamine infusions been available within the first few months of CRPS onset.  I've encountered people for whom Ketamine was the first treatment -- not an oddity, not weird, not excessive.

It will take me a few days to regain that razor's edge incisiveness for which I am so well known. 

July 5, I am supposed to go back for some grand summation.  Rather, that's when I'm expected to beg for Prialt.  I can't face that right now.

Thanks for your kind thoughts and good wishes. 

I've written and deleted several paragraphs about Fred and what a blessing he is... who else could crack jokes during Ketamine hallucinations, who else could shine through the darkness? 

Ceiling tiles swirled and became roses, monochrome, white, flat, and thick black lines.  Various bands crowded together, skinny-legged and tight-panted, plugged and unplugged.  A black-haired Madonna whimpered in pain behind the curtain on my right, though "right" and "left," never my strong suits, were meaningless.

Like an anchor, immutable but still surprising, Fred guarded my feet, told me how much longer I had to go, made logic of the illogic, evened the rocky keel.








Sunday, June 19, 2011

$1.98

Bianca Castafiore is keeping her heft at a fair distance from me, a fair distance being enough of a head start to make it to her appartements in red stilettos, and without losing her Philip Treacy sculptural hat. La Bonne et Belle Bianca, always over-the-top in her ways, has attained that rarefied place known as Wretched Excess. Arrogant Opulence. Human Iconography.  She's the Imelda Marcos of Tête de Hergé -- at least in the millinery arts. The Parable of Mrs. Marcos and her 5,400 shoes is not one of my occasionally flighty references. Our Milanese Nightingale risks becoming the cartoonish  punch line of a joke.  Not that the Marcos' various rapes of the Filipino people had any humor in it...

A hat from Ms. Pearl's collection
An award-winning photo byArtist: Jan Siemucha
Anyway, back to the structured fabrics 'n stuff on Bianca's head.  Perhaps you can appreciate the feathers and flowers, the toxic shades best reserved for traffic signage, and the endless allusions to Seuss, but most of The Manor Denizens (and Mavens, don't forget the Mavens) are simply puzzled by all that fashionable electricity.  The cost of each piece is not demurely left to quiet speculation, as The Castafiore pulls a Minnie Pearl, attaching a legible price tag to her various brims. 

[Would that our friend had the insight of "the belle of Grinder's Switch":

Minnie once said that "The price tag on my hat seems to be symbolic of all human frailty. There's old Minnie standing on stage in her best dress, telling everybody how proud she is to be there, and she's forgotten to take the $1.98 price tag off her hat."]

But why does The Diva flee from me, however stylishly she does it?

The look in my eye?  My capacity for violence?  My jealousy of the artwork perched upon her head, the shoes on her feet?  No.

Well, maybe the shoes.  I loved shoes, back in the time when I could wear shoes.

Mostly, she is running because I add nothing to Marlinspike Hall's ambiance these days but screams.  I did not know myself capable of such screaming.  It is not intentional.  It is a product of pain.  And no one wants to be trapped with me inside despair.  Running to the privacy of her now-medieval, now-renaissance styled suite of rooms is the most logical of Castafiorean reactions, even if the shoes and hat slow her down.

I have been off of opiates since June 3.  Others have questioned the purpose of that and from the vantage point of *now*, clearly I lost my mind.  The 9.5 out of 10 pain that I am experiencing is not the dregs of withdrawal, as I've tried to fool myself into thinking.  This is the amount of pain I am in without the assistance of opiate medication.  I will not even try to describe it.  That I've done little beyond scream over the past week will have to satisfy your curiosity.  Years ago, when introduced to the stupid pain score of one-to-ten, "ten being the worst pain you've ever had," I decided to never give "ten" as a response, knowing that more pain was at least a possibility. 

Short of being dissected alive, I cannot imagine hurting more than this.

I saw my Go-To-Guy MDVIP doctor on the Friday before the first of this Ketamine infusion series -- designed to approximate the Schwartzman protocol -- and he surprised me by supporting the use of Prialt, "if this doesn't work out." I was adamant about not even entertaining the notion until the Ketamine treatment clearly failed to relieve my pain in a meaningful way. 

The last three infusions begin tomorrow and end Thursday. 

Yes, I am even screaming in the infusion center, vaguely aware that people keep coming to my bedside, trying to help, whispering questions I cannot decipher, just as I cannot figure their faces.

The seizure activity in my legs is now accompanied by spasms in my arms.  It's cruel and unusual punishment that I'd been comfortable attributing to opiate withdrawal, but now know as my latest CRPS symptom.  It's not going away.

My kidney function took a hit from all the ibuprofen I've been living on but will surely correct itself. 

Last Thursday, there were only two of us patients awaiting the miracle of Ketamine.  It was kind of eerie.  The other patient was right next to me.  I never saw her face but we all witnessed the terror of her dementia, which centered on the notion that her sister planned to leave her there and go home without her.  Her sister was kind and patient... until she began using me to manipulate her sibling's behavior.  "Shhh, now, sister.  You are disturbing the nice lady next to you... She needs quiet..."

Which was, of course, my cue to start screaming the inchoate mess of my own terrors. 

The night after the first infusion of this series, done at a much higher dose than I'd ever had, was pure Hell.  I hadn't slept in a long, long time.  Fred was in bed, and I wanted to do something -- no idea now what that was -- and ended up in a nightmare of ramming my wheelchair into walls at full speed, seriously injuring the toes on my right foot, and smashing the heck out of my knees.  I was having black-outs.  To jerk back into consciousness was to see the wall, the door, the ramps, all flying at me and having no time to brace for impact. 

So you see why my friends and family flee when they see or hear me coming?

I know it's hard for you to believe but I generally undersell the extent of my pain. In just a few months time, though, it's become the center of my life.  I watch Bianca teeter-totter on her amazing heels, running with one hand clamped on her behatted head, crowing with operatic glee when she reaches her sanctuary.  Fred finds numerous errands to run -- even in the middle of my treatments, he has begun driving around the area of the hospital, showing up again in time for the dregs of Ketamine to run in. 

I cannot see surviving this.  I cannot see allowing an implant for Prialt.  I cannot see farther than this coming Thursday, when I will be able to say that I TRIED. 

Thursday, June 9, 2011

The Contest FAIL




I was "filming" to enter a contest for which there was a $300 prize (I've never entered anything but poetry contests, a few of which I won). I was getting ready to create the movie by "splicing" the vids that were strung together, when it occured to me to read the small print on the contest...

And, of course, it ended last December!

Well, that eliminated the work of cutting up all the separate videos and so I stopped making nice-nice for the competition, and made this version, mostly for Fred and my enjoyment. The music is by Yoga Tribe, "Bombay to Santa Fe."

Please ignore the scratchy sound of my voice... I've been a little under the weather. [insane cackling from the STILL-IN-BLEEPING-WITHDRAWAL moi]

Some observations: 

The cats are -- in age order, descending -- Marmy Fluffy Butt, Dobby the Inimitable, and Buddy the Kitten.  There are times we cave, completely, to Feline Antics.

You might need to pause the oh-so-stellar vid to see that Marmy continues to scare the shit out of Buddy, particularly today, since she tried to kill him just minutes before this chef-d'oeuvre was created.

Dobby is clearly a Feline-to-Human Ambassador (and he's a bit more like his old self -- he has been very depressed since we lost Sammy last July -- me, too);

And, lastly, ummmm... This is clearly not Marlinspike Hall.  It's one of the out-buildings on The Manor Property.  Yeah, that's it!  It's a crowded, cramped, and cramp-inducing, badly constucted renovation of Ye Olde Haddock Barn[e]. [insane cackling from the STILL-IN-BLEEPING-WITHDRAWAL moi]




As all the TV chefs say at some point in their famous lives, "Today I have made for you a lovely marinated bit of fluffy video... Please enjoy!"

The Forgotten Draft: It Was Scribbled Back In May

Monday surely was a wonderful day.  I will remember it, draw upon it, make it a point de repère

If you missed my wonderful Monday because, possibly, you were busy enjoying your own wonderful day, allow me to summarize:  Due to violent spasms, mostly in my left leg, oddly enough, I took BOTH tizanidine and baclofen around 2 AM, something that is not advisable and that I'd never done before.  Normally, I sleep in discrete increments of 45 to 90 minutes, after which my body and mind like to take a break from all that restorative good stuff and thrash around for a bit, maybe bake some bread, do a load of towels, or scrub an already clean floor.  However, after downing a double dose of muscle relaxants -- Oh, Sweet Oblivion!  I slept for 8 hours, uninterrupted.  You'd have thought I had undergone both a complete body and personality transplant.  Pain?  Who cared?  I could deal with it -- I could do anything.

("I can do it;  I can do anything!":  Words for which I am famous, having once sat upright while still asleep and made the announcement in a strong, loud voice, after which I laid back down and resumed snoring.  I was in the middle of my first semester in grad school and feeling rather... challenged.)

You know how the story goes.  Monday came, Monday went.  Monday night?  Sleepless.  Jerking leg.  Having already baked, washed, and scrubbed, I settled for distraction and finished off one mediocre mystery novel and started another.  Tuesday proved difficult.  The spasms shifted gears, ignoring the musical rules of tempo and the physical limitations of gravity -- while the regular pain battled my best intentions and asserted its coarse familiarity. 

I picked a fight with Fred over one of the Militant Existential Feminist Lesbians and badmouthed a Straight Uncontemplative Non-Feminist Woman he likes a lot.  He was disgustingly kind and accepting in response.  Grrrr.  I was shorttempered with Buddy the Kitten, spraying him in the face with The Dread Yellow Water Bottle when he bit down on a data wire --completely forgetting to try "No!" first.  He responded by licking my nose, curling up on my chest, and purring.  Grrrr.  I fired off a snotty email to my half-sister who promptly replied with some nonsense about neverending love.  Grrrr.  What?  Will no one let me pitch a fit, and help to fuel it with an in-kind donation?  Are they all, prepubescent felines included, going to ignore and squelch my Maladaptive Sick Behaviors?  Grrrr.

But as more and more people are saying, "at the end of the day," we made it through... 

Let's see.  That brings this fascinating LifeLog to Tuesday night.  I had a major CRPS shift, going from shrunken, blue, burning, freezing cold... to swollen, red, throbbing, burning hot.  Before the pain became so bad, years ago, we used to entertain ourselves by watching my right foot change colors, and considered its temperature variations a potential boon for all those camping trips we were going to take one day.

I consider the Red Phase to be an anachronism, simply because that is how CRPS initially presented itself, back in 2002.  The slow shift to the Blue Phase was accomplished over years, and my new ability to rapidly cycle between them is... well, new.  And by "rapidly," I mean a range from mere minutes to a course of several hours. 


Monday, June 6, 2011

Update on the Jump Off

i cannot tolerate the taste of coffee.
i keep forgetting to take the rest of my medications.
i drop things. incessantly. it's about to drive moi crazy.
i cannot keep up my end of conversations.
suddenly, two out of three felines are afflicted with the dread klingon dirty butt syndrome (dkdbs).
more cow bell!
oh, didn't i tell youse guys? i love christopher walken.
doesn't ANYONE (beyond her grandparents and uncle) remember caylee marie anthony?
i'm sorry but arpad don't-make-me-say-"corroborate" vass wasn't in the least bit "sympathetic" as a witness!
i lost my sympathy the first time i heard his simpering giggle.
and if they make the jury sniff "dead air"? uh-huh, it's all over. (the jury is gonna resent the heck out of that!)
how is it that i went roughly 7 hours almost withdrawal symptom free, then got hit with the godawful leg seizures in the eighth hour? whywhywhy?
buddy the kitten has been seeking reassurance of our love today --
he has been repeatedly shooed away when we are enjoying The Dobster
and apparently, he is shaken to his kitten core by that.
i am the very definition of "bloated."

that's about all that's fit to note.

oh, and my vision is permanently blurry.
also -- i mopped the entire manor this morning (and you know how big marlinspike hall is!) (i did it during the above-referenced 7 hours.)

and when i say "bloated," i mean BLOATED.

Sunday, June 5, 2011

REPOST: El beso de la mujer arana

REPOST WARNING!
[maybe that should read "gush of sentiment" warning.]

hi, folks!  it's sunday morning... wait!  no, it is now sunday afternoon, and nadal is closing in on federer, hooray!  i can only hope that people understand clay-court genius... the french do, of course.  they totally get how it can make even an all-time great look awkward and late-swinging...

yes, looking stupid is the gift to any challenger of a truly great clay court specialist... and that's a more accurate description of what the french "totally get."  even if voltaire felt he had to reside in switzerland in order to survive his own shenanigans...

my tired and weird commentary?  it's not just a visual effect of methadone withdrawal that brought me to the point of reposting this blog entry of april 2009.  [if you're not a regular of this blog, i am in my 42nd hour of the GreatJumpOff...].

nope... i have a referring reference, a citing cite!  late yesterday afternoon, when i thought i'd experienced the worst of the worst of withdrawal (oh my god, it's five-all third set... rafa?  helllllooooo, rafffffaaaaaa?  it's love-40 on nadal's serve.  choke city, it's choke city.  okay, okay, now it's 15-40.  like that's any comfort.... because federer is now gonna serve a break up at 6-5... crap.  he's wily, that federer.  does anyone else think he has bulked up a bit?  no, i am NOT starting an unfounded steroid accusation.  ohmygod what a beautiful drop shot by rafa!)  ummmmm, right.  ummmmm, well, god damn it all, as we go into a FOURTH SET, as the elder mcinroe announces that nadal "has become predictable," i have developed a new withdrawal symptom:  fever???  who knew that withdrawal would provoke fever above 101?  (if you're not a regular of this blog, i am in my third year of experiencing daily fevers, though they are characterized as generally being BELOW 101...)

shoot, who knows?  maybe federer is behind this latest spike?

i wouldn't put it past him.  he's thinking:  "drat!  that inveterate (better than invertebrate!) blogger at elle est belle la seine la seine elle est belle is badmouthing me once again.  i must raise my level of play against this clay-court specialist!"

but... i will not be deterred from my story.  yesterday, yesterday afternoon, i watched Presumed Innocent.  no, not because of harrison ford, you numbnut, you!

BECAUSE OF RAUL JULIA.

Raúl Rafael Juliá y Arcelay (March 9, 1940 – October 24, 1994).  it still grieves me greatly to read "Raul Julia WAS an actor..." -- and not just because he was much more than a mere actor...
Humanitarian work


During his life, Juliá continued the work that was done by his parents during his childhood, cooperating with social and educational activities. Due to this, he was named to the New York Council for the Humanities. Among the targets of Juliá's charity work were initiatives directed towards youth. Concerned with rising levels of violence among teenagers, he sponsored script writing in high school students and supported young actions. In order to promote other Latin American performers, Juliá was an active member of the Hispanic Organization of Latin Actors (HOLA) and co-founded Visiones Luminosas, an initiative to promote screenwriters. He continued to work in the NYSF, but performed without receiving a salary. In a similar fashion, Juliá cooperated with independent filmmakers in Puerto Rico by acting in their productions for free or receiving a low salary. This constant involvement with the Latin American community earned him a posthumous Hispanic Heritage Award. Juliá also promoted interracial integration, being a member of Racial Harmony and serving as the chairman of the Joseph Papp Celebrity Coalition for Racial Harmony.


As part of his work in The Hunger Project, Juliá donated food to a food bank once every month. He also promoted the program on television and radio and served as narrator in bilingual videos. Juliá opened slots in his schedule to participate in multiple benefit galas on behalf of the organization. Due to this work, the project gave him their Global Citizen Award. His involvement was also recognized in "Ending Hunger: An Idea Whose time Has Come". On March 24, 1992, Juliá received the Courage of Conscience Award. In 1994, the government of El Salvador recognized his activism for human rights, granting him the role of overseer in their general elections in representation of Freedom House. During his visit to the country, he visited the tomb of Romero, subsequently describing his experience in a piece published in Freedom Review.


In recognition, the National Endowment for the Hispanic Arts offers the Raúl Juliá Award for Excellence annually. In 2002, actress Sandra Bullock was presented with the award. She received it for her work as the executive producer of The George Lopez Show, which offered work and exposition for Hispanic talent. In 2003, Daniel Rodríguez won the first Raúl Juliá Global Citizen Award from the Puerto Rico Family Institute based in New York, receiving the recognition due to charity work.


Honors
The Raul Julia Micro Society, a charter school located inside Public School 3 was named in honor of Julia. The school is located in the Tremont neighborhood in the New York City borough of the Bronx.
The actor's training unit of the Puerto Rican Traveling Theatre was renamed the Raul Julia Training Unit.
The National Hispanic Foundation for the Arts (NHFA) honors outstanding entertainment personalities annually with their Raúl Juliá Award for Excellence. The award which recognizes individuals who have contributed to the growth and awareness of Latinos in the arts and media is awarded annually to many Hispanic and non-Hispanic personalities. Past winners include Cristina Saralegui (2010) and Sandra Bullock (2002).
In 2000, the Hispanic Organization of Latin Actors (HOLA) renamed its Founders Award to the Raúl Juliá HOLA Founders Award.


that's right! proving once again that i am stronger than my addictions, yesterday afternoon, while watching
yesterday afternoon, i fell head over heels in love again... with raúl.  and i remembered, despite the incessant jerking of my legs, despite the nausea and other gastrointestinal difficulties, the yawns, the sweats -- i remembered that i had, once before, written a blog post about raúl juliá.

and without further ado (ha ha!) -- here it is (and CONGRATULATIONS, RAFA!!!!!!)[OKAY, so it is not all about raúl... so it is mostly about me and fred... what? did you think i was actually going to rise above incessant it's-all-about-me-itis?

********************************************************************************

It is happening too soon, this descent into pre-surgery panic. You would think that with each experience, each *survival*, I would build confidence instead of abject terror.

You'd be wrong.

I know that characterizing the result as "survival" is taking a grim view of things. It's just that none of these operations have provided the doctors (hence, me) with answers to the normal burning questions of life: Why can't we identify the organism that has produced all of this infection and explosive pus within my skeleton? Why does the Infectious Disease specialist say that there are "no antibiotics left to try"? Why is there air? Who keeps beating me to within an inch of my life every time I manage to doze off? Where did Fred put the cheesecake? How do we stop the spread of CRPS/RSD with each freaking surgery? Really, I am not kidding: Where did Fred stash the damn cheesecake? Never mind that the infection has apparently caused me to have blood sugars in the 300+ range... It's a zero-carb cheesecake. I swear.

Okay, I will opt for radiant (and subsidizable) health, and choose a better poison: sugar free, artificially-flavored, highly concentrated, orange Jello. I just happened to whip some up in a Julia-Childlike moment around dawn. To splurge? Top with about a quarter cup of lowfat plain yogurt, and serve with large slice of cheesecake.

I am sitting here, all alone within Marlinspike Hall, with a creepy Mudd mask on my face and, therefore, little bits of Mudd everywhere. My shirt collar looks like a bad attempt at papier-mâché. This stuff should have been washed away about an hour ago, but I've been "stuck" -- about as dry and flaky as the crapola on my visage. Remember the subtly dropped reference to "abject terror"? Yeah, that.

Prior to one of the last surgeries, I wrote this:

How in heck am I going to be able to care for myself, much less keep The Manor neat as a pin? The Old Masters dusted and straight (not to mention the occasional Rubens or Velasquez restoration project on long weekends)? All the antique Blue Jasper Wedgwood plaques free of nasty cat fuzz? The lawns -- replete with a scale replica of Wimbledon courts 1-19 plus Centre Court, sans that awful poof of a retractable roof that's going up for next year -- deeply green and trim? Oh, and how in the world can I keep the black algae out of the moat without a daily brushing and correction of chlorine requirements? I mean, I doubt that I'll be able to sport SCUBA gear anytime soon.


The answer to everything, unfortunately, appears to be that poor Fred will do all that needs doing. I am consumed by guilt, all the while wishing I could consume his cheesecake.

I have been able to achieve total self-care since the last surgery. He hasn't had to help me with anything -- oh, that is not true! I forgot about the laundry. I can load the dirties into the washer and get that going, but my arms, hands, and shoulders aren't strong enough to lift the wet clothes and transfer them to the dryer. So he does that for me. Sometimes I cannot manage the finer movements needed for folding, too, so I have had to try to assume a nonchalant air while he folds and puts up laundry.

I can bathe myself and manage all the fascinating chores of hygiene. My chores are probably more complicated than your clean-up routine -- There is, for instance, some difficulty when your arms won't go exactly where you need them to be... when you involve that nasty red Hibiclens... when you cannot reach the hair on your head! I've found ways to get it all done and usually come out presentable -- but never remotely like the way I *can* look.

He says that I should ask him for more help. No. I don't want him washing me, dressing me, helping with hair, make-up. That would be my suicidal low.

He does all the shopping and errands: groceries, banking, and all the other stuff. He drives me to all appointments, and in what can only be described as insane traffic. Tête-de-Hergé-ens are notoriously bad drivers. About half grew up driving on the left side of the road, the other half on the right. It keeps things interesting.

Today, Fred has snared La Bonne et Belle Bianca Castafiore and they've tramped off through the African savanna area of The Manor's grounds to deal with the Wimbledon-esque courts. He didn't exactly explain it to her, but he needs her natural, umm... girth -- to help drive the rollers that tamp down the grass courts.

I hope that the method behind his madness is to indoctrinate her to life as a responsible Manor-Mate. She needs to pitch in more often. She could stay busy just
with our new effort to replace all that crumbling medieval chinking between the stones and wood beams with space age latex-based polymer chinking -- the kind that people use on log homes. We embarked on this without exactly having the Captain's permission. I think the hope is that he won't really notice (though the fact that we won't be consuming so much dried peat and wood might tip him off). Living "green" is really nice, but living warm is even better. And the stuff comes in a variety of colors.

Okay... now my face has contracted into a weird leer. Gotta JUMP in the shower and scrape it off. Wash the head of curly and somewhat oily hair. Sit humbly on my shower chair, figuring how to get clothes on without breaking a bone.

I haven't showered in about a week. That does not mean that I am not clean -- I am -- I just haven't been able to stand long enough to get in the tub. More honestly, I have been scared, as I've managed to pass out a few times in recent weeks.

Yadda.


I'll leave you with this: Occasionally, and oddly enough, mostly at times when The Fredster and La Bonne et Belle Bianca are absent, I daydream and miss, viscerally, Raúl Juliá.

Doesn't everyone?