Memorial Repost: Nepeta Cataria [originally published 8.17.2010]

Retired educator, here. I'm in severe pain and managing to piece together a few consecutive hours of sleep could only help. To that end, I took a Lunesta last night, and almost enjoyed falling asleep. Looking back with fondness at those moments, when I woke 45 minutes later, I knew I was... screwed again! So it was another up-and-down night. Still, it was fun cavorting with the huge fuzzy-green lunar moth that flitted around my head, leaving trails of questionable, slightly oily, vapor.

When the felines convinced me it was time to get up this morning, I stretched out my arm, feeling for my glasses. You know, the $379 glasses that I just got last month? Guess who likes to steal spectacles? Yes, our little idiot, the Dobster. I took the bedroom apart – then expanded the search. By the time Fred got up, I had a headache (probably from having to wear an old pair of glasses) and a slight, ummm, attitude. He was immediately drafted for the cause and seemed very eager to help, as he stood there mumbling and scratching himself, inquiring as to the date and time.

So he’s crawling around and under things, armed with one of his best flashlights (one day, I will do 100 words on Fred and the flashlights). Butt in the air, crawling right behind him, sweet and chipper, was... Dobby. Were he not a cat, I would have sworn he was mocking us.

Please note that breakfast had not been served to the feline contingent. To that end, Sam-I-Am felt that he might inspire me by eating a few pages out of the John Grisham novel I’m reading. Chomp, rip! Chomp, rip!

For her part, Marmy peed on the sofa, and -- in the name of parity, I guess, on one of Fred’s pillows.  God forbid she should feel left out.

She did what she does best.

Very crafty, very crafty. My attention thus divided by these wily cats, I believe they used these moments of frenzied confusion to transfer the purloined glasses to a new location.

But then, that would sound paranoid, bordering on psychotic. So, of course, I did not see Marmy actually sporting them as she sauntered past me toward my office, her fluffy tail swirling eddies of air. (She handed them off to Dobby, who absentmindedly squirreled them away in an Izod eye case, as he sat talking on the phone to their Grand Kitty PoohBah, evidently the mastermind behind this heist.)

Cough. Ummm. Did *I* write that?

Did I mention that I took a sleeping pill? One, I think.

Sammy said, “Girl, would you get your opposable thumbs together, open those kibble containers, and serve up some breakfast? And, you know, Fred looks like he could use a stiff cup of coffee. C’mon! Move it, let’s go, let’s go, let’s go!” So I fed and watered everyone, ground some beans, washed a few dishes, and finally brewed a pot. “That’s better,” cooed Sam-I-Am, my beloved boy.

It’s hours later, now. They have me pinned in the bed. Dobby is draped over my left thigh, Marmy is nestled between my legs, and Sammy is curled up next to me, eyeing me over his paws. There’s no way out. I managed to snag my laptop. This is my only hope. Maybe someone out there will notify the authorities that there is a woman, poiseless and glasses-less, a pitiful physical specimen, a whiny gimp, being held hostage by one domestic long hair known for her “*ack*:*ack*” rap, one domestic short hair (whose head is alarmingly small in proportion to his body), and by one large male who is not a Russian Blue but believes that he really, really ought to be.

Fred seems to have left the premises. If, indeed, the world has gone as topsy-turvy as I suspect, he is finishing the mowing job he promised The Cistercians back when Spring was young, in advance of the resurrection.

{What am I, delusional?  Drugged?  Wait.  Oh, yeah!}

It is my belief that Fred has been successfully co opted by the cats. I heard snippets of a conversation between Fred and a cooing Marmy – something about fresh tuna, whole cream, and – sadly – a demand for more better nip, with fewer stems and more buds... God forbid that the cops stop him.

I wonder how much bail might be for possession of nepeta cataria.

Bianca Castafiore never has these kind of problems.

Getting Down To Brass Tacks*

Sometime today -- I'll spare you a description of where, how, when, and why -- I realized that coming home after the upcoming surgery may not be the wisest course. Coming directly home, that is!

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.

As I was experimenting on basic hygiene techniques without benefit of either shoulder, my spritely spirit plumbed the depths of despair.

Oh, am I being too theatrical for you? Well, tough titties! Whoseblogisitanyway?

Continuing my efforts at putting the Fredster first, for a change, the idea came to me fairly effortlessly: This time, when they ask "Don't you think you would benefit from some time in Rehab?" I will say "You know, that might be a hell of a good notion."

Usually, I curse and produce spittle. Rant. Cry. You know, all of those wonderfully adult Drama Queen reactions. The Pout. The Woe-Is-Moi. Really, though, everyone who knows me knows that I am filled with ice, absolutely cold-terrified at the notion of being "put away" away and forgotten.

The problem is that there really is not much that can be "rehabilitated." I mean, if you have no shoulders, even intensive PT (with the most motivated of clients) has limitations.

I guess this is more a case for OT and an 1,000-page medical supply catalog than a muscle bound attendant with an American Physical Therapy Association (APTA) endorsed gait transfer belt stashed in his dark blue fanny pack.

*HERE

*THERE

Between here and there, I sneaked up on Darling Fred and blurted: "DoYouThinkIShouldGoToARehab(OrANursingHome)AfterSurgery?" and then, with no intent for emotional blackmail, burst into tears.

He fairly yawned, and he definitely laughed at me.

"No, I don't think so. I know it is embarrassing for you, but I can help you wipe your ass... or we can convert all the damn bidets around here back from planters to their intended usage. What else are you worried about?"

Well, all I can say is -- thank goodness someone is willing to get down to Brass Tacks* -- and aren't I lucky to be with such a gentleman, here at Marlinspike Hall, deep, deep in the Tête de Hergé ?

********************************************************************************
*Brass tacks is an object used in the popular expression "get down to brass tacks". The expression usually means clearing out confusing details and finding out the real facts about something.

The etymology of the expression is unclear. It may have roots in the way fabric manufacturers used to mark out a yard in tacks on the counter so customers could buy their fabric accordingly. It was common for some customers buying material or draperies to say to the salesperson "Let's use the brass tacks" which were embedded in the counter. Usually the salesperson would use his or her arm to measure the material. This has been seen in the UK even in the 1950s. This was done to save time overall, but the suspicious customer would often insist on having the material measured exactly, right up to the line of brass tacks.

Another possibility is that in the 1860s the US government issued boots for soldiers that were constructed using brass tacks to hold the leather soles on to the bottoms of their boots. As the boots wore down, the tacks would protrude through the sole and in to the bottom of the soldier's feet. 'Brass tacks' could mean to get to the absolute bottom of things in reference to shoes.

It is also argued that the idiom is derived from the "Brass Tax of 1854". When the makers of clothing, shoes, instruments, tools, etc. that required brass would gather the materials and count up the cost, accounting for the brass tax was the last - and most expensive - step. Therefore the phrase "get down to brass tax" could mean to get to the last and final thing, or to get past the formalities and get down to the crux of the matter.

It is also noteworthy that the tax, in addition to creating revenue for the government, led to a sharp increase in the cost of many instruments. tubas, trumpets, cornets, french horns, and other popular brass instruments gave way to flutes, piccolos, clarinets and oboes as the more affordable woodwind instruments' popularity skyrocketed. Evidence of this is most notable when examining Civil War marching music which relies heavily on the beating of percussion instruments and melodies from the woodwind family. Brass instruments are noticeably absent.

The earliest known use of the complete phrase in print, in the March 4, 1871 issue of the Galveston News (page 3), is "filing down to brass tacks"; hence, a shoemaker filing away too much material in excessive zeal to do a thorough job. The meaning was originally about the same as "putting too fine a point on it" or "over-arguing the point."

The expression might also be Cockney rhyming slang for "facts."

Another suggested Cockney etymology is that the expression "down to the brass tacks" may have originated from a similar British expression: "down to the crass facts." This original phrase is used to describe dealing with the basic details. Because of the Cockney British accent, it was incorrectly pronounced "down to the brass tacks," but still holds the original meaning.

Bull Crap Bull Skeet of Tête-de-Hergé

Retired Educator here.

A week or so ago, I received my usual hefty packet of health insurance Explanation of Benefits forms from Bull Crap Bull Skeet of Tête-de-Hergé. The trouble was that only one of the enclosed EOBs related to me. The other five reflected insurance use by four different individuals whom I'd never had the pleasure of meeting. Now, however, I knew their full names (and for two, their spouse's moniker), Social Security Numbers, employers, employee ID numbers, doctors' names, and what medical facilities they use. Just by the type of coverage they opted for, and their met or unmet deductibles, co-insurances, out-of-pocket, in-network and out-of-network payments -- it's easy to form a financial picture of my four new buddies. A couple of them are strapped for cash.

Somehow, knowing exactly where they were, what they were doing, and what was being done to them, on a certain day -- well, I think an e-vil person could parlay that into Deceitful Gain. (The term came to me in a dreamscape wherein I walked unseen around the current President of the United States as he stood at a podium, in the proverbial jeans with rolled cuffs, blue shirt with rolled cuffs, cowboy boots, and herniated stance. He was speaking a fiction, talking about "bad guys," those reprobate E-vil Doers, when -- unbidden -- he found himself salivating over the notion of the E-vil Doers reaping Deceitful Gain. He tossed it out to the press like a verbal hand grenade.)

Choo? Choo? Train of thought? Ah, yes. Knowing such specificity, anyone could return to the scene of the ersatz "benefit," posing as:

Celeste S. T. or as her husband Dale A. T. -- I do hope Celeste is recovering from her surgery in early July. Maybe I should contact Dr. Stuff's office to get the date of her next appointment. Without breaking a sweat, I know that Dr. Stuff is an OB/GYN and even that his PA's name is Courtney. I checked him out at the Composite State Board of Medical Examiners, and wow, is he an impressive doctor, currently Department Chair at one of the local medical schools! Oh, a bit of trivia for you -- Dale, it turns out, is a graduate of G. J.'s Comedy Workshops, so he is bound to take all of this confusion with good humor.

or

Doretha A. D. or as her husband Clark O. D. -- he works for PoDunk Seal & Stamp, "a bonafide mover-and-shaker in the world of embossed aluminum products." Now, I don't know if we're talking about the same Clark O. D., although most of the personal information does line up for this, but it looks like this guy was one of the original Gospel Intrepids: "God blessed the group to record their first album "I Want To Be Adored" which became a hit and carried the group around the country with some of the great gospel artists of our time. The group was then signed to a recording contract with Spotless Sounds Records. They recorded six (6) albums during the seven (7) years they were with Spotless Sounds Records." But back to Doretha -- wow, would you look at this! Thank goodness case law is public domain, eh? It turns out that sometime back in the 80s (those were the days...) Doretha and Clark appealed to a Court of Appeals about a Big Bad Creditor's e-vil lien, and they were successful in having the lower court's opinion reversed! Yay, Doretha! Yay, Clark! Hmm, so now I know a great deal more about them, including the fact that their lawyer back in June of 1984 has since become an inveterate ambulance chaser and horrific TV commercial maker! And lessee, what else? Ah, just by doing a little lazy genealogy work, I have found Clark and Doretha's son, L. Heathcliff.

The Fredster just stuck his head down to see what had me tsk-tsking so much, and went pale. Seriously, he turned white as a sheet. Well, white as a *white* sheet. (I have an Analogy Disability.) "You can't do that," he said. "You had better not mess with Bull Crap Bull Skeet of Tete-de-Hergé, Retired Educator, I mean it! And you cannot publish other people's private information, either. You have crossed the line this time." Then he fairly ran away, knowing by my big smile that I am going to proceed anyway -- he didn't even get to hear my assurance that I have made as many changes to my "case presentation" as the sainted nurses and doctors do in their HIPAA-fied blogs. Shoot, probably *more*.

So I guess I will honor Fred and forego telling you about Willie E. J. -- nice guy, works for the state. The great news for Willie is that he only owes $15 on his X-ray bill at County Hospital...

The day these EOBs arrived, I weathered the idiot telephone computer to reach a Customer Service Representative. (See? I can be nice. I did not even mention the word oxymoron.)

Never have I been treated so well! Warm tones, terms of respect, adequate time to present my issue, immediate recognition of the problem, and an equally swift offer of a solution. Solution? Well, no, what was done was done. The questions I had related more to ascertaining whether my personal information, like those of these lovely people that I now knew intimately, was in the hands of someone who did not work for good, as I do, but for e-vil.

Customer Service Representative Number One told me that he had a real, live specialist lined up for me to talk to, and would I mind very much holding just a few seconds? "Not at all!" I crowed.

Hmmm. Customer Service Representative Number Two? Smarmy, very, very smarmy. We danced around a few issues. Like how Bull Crap Bull Skeet of Tête-de-Hergé knew who had received whose information, like how "they" had plugged all leaks, and -- my favorite -- like how they knew that my information had not been compromised. She issued reassurances that *no one* could fulfill and Retired Educator stopped pulling her punches.

"Retired Educator, we will send you a stamped, addressed envelope in which you can return those EOBs to us at no cost or disruption to you!" (Like I had just won the Lottery.)

"Customer Service Representative Number Two? I have a shredder. It's taken care of. So if you will just note that on your little computer? Actually, come to think of it... Might it not be more righteous, and righteous *is* what we're reaching for here, yes? -- Might it not be more righteous for me to contact these poor folks by phone, and then mail *them* their EOBs? They are the rightful owners, you might say! Whaddaya think? Oh, and about your reassurances that none of my EOBs were sent erroneously to some e-vil Deceitful Gainers -- that's what the gol' darn President of these United States of America calls them, you know? Deceitful Gainers. They're out there, Customer Service Representative Number Two, they are out there. Anyway, I need for you to tell me exactly how you know that my EOBs are not in the Evil-Doers, Deceitful Gainers little hot hands, 'kay? Come on, put my mind at ease, Customer Service Representative Number Two!"

"Retired Educator, can you hold?" she whispered. I was wearing her down.

When she returned, she launched a cock-and-bull story worthy of Bull Crap Bull Skeet, all about how they had crosschecked the triplecrosser doo-hicky with the appropriate top secret incantations and by golly, my name remains unsullied. That envelope that she'd mentioned was on its way, and if I would just return those errant papers...

"Right-O," I told her. "I'll get right on it. The shredder is warming up, as we speak. Oh -- do you mind if I blog about this?"

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

I have indeed shredded the EOBs in question.

Yesterday, I received a notice from BCBS that my personal info had, in fact, been compromised, and so would I please accept a free year's subscription to Equifax Credit Watch (Gold level!).

"Well, that's okay. Yeah. Cool," thought I. I love getting free stuff, even if it is my own financial history. I logged on at Equifax, gave every bit of data requested, then entered my free year's subscription code... and was told that it was an invalid number.

Why am I not surprised?

Keep the Faith

Every time I encounter a good blog entry about CRPS/RSD, I try to link to it -- and offer a huge "thank you" to the author, because such things are few and far between. This morning, my Medworm subscription hit upon the following:

http://rlbatesmd.blogspot.com/2008/09/complex-regional-pain-syndrome.html --

over at Suture for a Living. The intro to this blog sketches the broad lines of this blogger's interests:

I am a plastic surgeon in Little Rock, AR. I may "suture for a living", but I "live to sew". When I can, I sew. These days most of my sewing is piecing quilts. I love the patterns and interplay of the fabric color. I would like to explore writing about medical/surgical topics as well as sewing/quilting topics. I will do my best to make sure both are represented accurately as I share with both colleagues and the general public.

Such a desire, such an approach, is appealing to me, especially, as most of my professional "specialty" deals/dealt with the interplay between the plastic and the written arts, and my interest peaks whenever I encounter a unifying vision of plural modes of representation.

Lord, how easy it is to lapse into Ivory Tower Speak (yet another of my foreign languages).

So, this morning I am grateful to the incredible technology that scans the world of electronic communications for things that are of interest to me, and possibly to me, alone. I am grateful for the chance to connect, however artificially, with someone of a completely different ilk who nonetheless has transected the thread of my thoughts... I don't get excited anymore about the likelihood of effecting any real progress in the diagnosis and treatment of CRPS/RSD through internet "publicity" -- I am too jaded, too much in pain, too depressed, too disabled.

I hate that word -- disabled.

Yesterday, after coming home from the weekly Infectious Disease appointment (the PICC line comes out next week! Hooray!), I was in bad shape. Riding in the car is difficult, and my pain level was hovering around 8 (grrrr -- what a useless thing, the pain scale). However, I had made noises the evening before about my firm conviction to clean the house a bit, and so, after finishing the first two infusions of the day, I gathered my weapons of war and began vacuuming.

Okay... I am used to Wheelchair Vacuuming, an Olympic endeavor, an Olympic sport. But now it is complicated by a useless right arm and a *&^%#@ hurting left shoulder. The nurse in the ID office had set off a flare of pain in my left hand because she had been unable to get any blood through the PICC line and had been forced to stick me several times in that hand. Not her fault, just an unfortunate thing when there are needle sticks in an area already involved with CRPS.

Given the circumstances, I chose to use the Power Chair Push-me-Pull-you technique -- basically accomplishing the task by combining the thrusts of the vacuum with the thrusts of my ruby-red chariot.

And somewhere between sucking up the huge pile of carpet cleaner that I had placed over Sammy's last deposit (please see: Potpourri -- Olla Podrida) and the gymnastics of getting into the nooks and crannies of the dining room, I went mental.

Poor Fred. When I go mental, I strive to share the warm and fuzzy experience with my beloved. Poor Fred.

Suddenly I was rolling myself in circles around the living room, sounding off about the state of the puked-upon carpet, about the total invasion of the cat creatures. (Of course, this problem only exists in one tiny part of Marlinspike Hall in the Tête de Hergé -- the rest of this opulent manor is spotless and petless, crucial since we house several museum quality painting and sculpture exhibits, as well as an extensive decorative art collection of baroque furniture -- mostly cabinets, commodes, and French stools.) Fred stretched out on the nearest chaise longue, steeling himself against volley upon volley of invective.

Let's just say this: Promises were made; Christmas gifts were agreed upon. And yes, the removal of carpet and the refinishing of the medieval stone and early 20th century wood floors were part of the negotiations. So it goes when I get mental.

I worked on for several hours, and ended up needing help getting into bed -- always a depressing thing, not to be able to do even that. Plus, I left some of the cleaning undone.

Anyway, my hope was that a bit of rest would conquer the pain and difficulty moving, so that I could redeem myself by being a fun partner for the remainder of the day. Instead, Fred ended up having to nuke a frozen dinner for me (losing points), cut up the pale but purportedly "blackened" slab of purported chicken (winning back what he had lost), and take on the feline's evening meal, as well. Poor Fred. Yes, it is a refrain, and one you may as well learn.

When my acronyms are under control -- from the SLE to the AVN, passing by the AI, and back to the CRPS/RSD -- I defy the meaning and intent of the label disabled. Doing anything without assistance and in my own time is wondrous. That life has been unavailable to me since late last year. Everytime I try to pretend this is not so? I pay, and everyone who loves me pays.

So sometimes the best I can do is celebrate the stray blog that -- in the best of all possible worlds -- might make a difference. Thank goodness for this quilting, sewing, needle-wielding plastic surgeon who decided to disseminate some information about one of the more obscure neurological disorders in existence! Somewhere there is a woman who will be able to joyously and painlessly vacuum her living room, who will pirouette as she cleans the toilet, who will dash from one satisfying professional experience to another, from one colloquium in the Rainbow-Ribboned Multicultural Center to the next in Stuffy Whosits Library.

I just gotta keep the faith.

Ar!

Bianca's Big Mouth or Wetback Entitlements

Mes chers lecteurs, mes lectrices hors comparaison,

Je vous écris à propos d'un petit rien.

Voir: http://prpnurse.blogspot.com/2008/08/entitlement.html

Dégueulasse! Jonathan Swift, a-t-il dû se soumettre à de telles bêtises?

"Ah! Je ris de me voir si belle dans ce miroir..."

Quelle saloperie! Je viens de perdre ma tête, de m'énerver, de me mettre en colère! De quoi s'agit-il? Il s'agit d'une blogueuse impérieuse, pseudo-pseudo, qui voudrait être toutes choses pour tout le monde (eh oui, tout le temps!).

Je me demande... serais-je aussi bouleversée si demain n'était pas demain?

When will they understand that to laugh in the mirror comes only with the well-developed, umm... capacité... la habitude... of seeing oneself? I am fearing the ones without the laugh en face de, in the face of -- the looking glass.

@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@
Retired Educator, here. I need La Belle Bianca's grande bouche getting me in trouble today, of all days, like I need a prosthetic shoulder joint or aortic aneurysm fix!

Today's Diary: The Man on the Train

Retired Educator, here --

I am in an odd place, and by that I do not mean merely living in Tintin-world with a quasi-fictive diva, La Belle Bianca Castafiore, my darling intrepid Fred, and three very wily cats -- always half-stuck in Marlinspike Hall et (ce qui est beaucoup plus important) dans la Tête de Hergé, qui est, d'ailleurs, très décédé.

Quasi-fictive -- what do I mean by "quasi-fictive"? Have you ever heard La Belle Bianca Castafiore belt it out? Do you really have a clue as to how "belle" she is in "ce miroir" -- how captivating is her laugh? No? Then check yourself, my friend, check yourself! The tree, it falls in the forest -- the one hand, it claps.

Since December or January, I have been fighting an infection which translated into daily fevers and sweats, pain and general misery. Since this was an addition to an already difficult mix of SLE, CRPS / RSD, multifocal AVN, and adrenal insufficiency, I haven't been, ummm, well. Finally, my white count fought its way out of the 13,000s and the 15,000s, making its way to the 17,000s -- the platelet count went bonkers -- and so on. In spite of several visits to high-dose-steroid land, the pain and inflammation were not self-limiting or even slightly improved. So I was sent to my favorite orthopedic surgeon to determine whether one of my three joint replacements, or one of my three reconstructed joints, was infected. Yesterday, after managing to finally unearth my gallium scan results, it was declared a fait accompli. The right shoulder is the offender.

So I have been in this weird, strange place of fever and fiction, dread and denial. I am not sure that I can go through the process of losing that prosthesis, being further limited in what I can do. I am already living this vida loca from the perch of my wheelchair.

I maintain a diary and while a part of me knows this is nothing but an intentional confusion, some days, I want the diary to speak on the blog. The interstices, they have always fascinated me, even -- no, *especially*-- in my academic life -- which, I'd best acknowledge, is as dead as Hergé's tête.

Public blithering, always a pleasure. En tout cas, this is what I wrote today, in diaryspeak:


dear diary,

i sat down to purge my soul and instead got hung up thinking about an album by the roches. it must have been one of their first, as most of the songs were written around 1979. ah, yes, it was their first. that LP once felt like the soundtrack for my pretty awesome and full life. with the help of heavy denial, amnesia, hard drugs and heavy metals, it still can!

that was around the time that i both worked 40 hour weekends (...) and had a side gig working nights at a convenience store. the fact that i was also going to school full time ought to be more important but somehow it just sits there like an overweight, exhausted factoid. i was sharing a house with the woman i still call my best friend, all current evidence being, unfortunately, to the contrary. we were a tad bit wild, so it is safe to say that my approximate 60 hours of work a week plus my 21 semester hours probably saved my sorry ass. it turned out that she wasn’t actually *enrolled* in school – she had dropped out and was spending most of her time waging war against corporate america (she is iranienne). [ha! neither assertion complements the other! what a hoot that i had a moment of thinking the one danced with the other!] still, we managed to meet up most weekday afternoons in the foreign language department lounge – i thought we were meeting after classes! in reality, who knows what she had been doing all day beyond passing bad checks to buy such household staples as cognac and fresh flowers.

not terribly domestic (or domesticated), she was famous for waxing and polishing the twisting wooden staircase to our second floor. i was well-known for almost breaking my neck upon said stairs.

she saved my convenience store job on several occasions. perhaps it was due to a slow build up of fatigue, perhaps i just really hated that job, but i developed a serious pathological aversion to the task of cleaning, straightening, and filling the cooler section of the store. it was cold, it was creepy – when you are the only one there and it is 2 am – everything is creepy! i began to leave it a sad mess, as my dedicated manager quickly noted. few things escaped her jaundiced alcoholic eye, except the occasional bank deposit bag that she tended to leave on the hood of her car.

romy began driving over and doing the cooler part of the job for me! bless her sweet bones! the real gift was one of company. i betrayed little of the fear that some nights obsessed me. after an incident that ended with me chasing away four or five guys intent on robbery (don’t ask. to this day i don’t know what possessed me! i was so angry that they would even *think* of robbing “my” store. harrumph.) – i was happy for her company. if my manager had ever come in... ah, but did i mention her jaundiced alcoholic eye? i could easily just have cued romy to switch off the back cooler lights and waited her out – luckily we never had to do that.

we did, one night, have to escape two idiot guys (sum doods) who were not stellar citizens. they wanted admission to the store of Convenient Wonders, but i had closed. romy and i headed for the pristine 1965 baby blue cadillac that was to serve as our cushy ride home -- only to find a flat tire.

lucky us, we had the two yahoos to change it. they were three sheets to the wind (someone tell me of that phrase's origin.) but still focused enough to realize that they had two pretty girls, and that one of them was kinda foreign looking. small detail... this was during the “hostage crisis” in iran. romy did not advertise her background, her home. relatives and friends of hers in the states had been attacked, and calumnied.

so our sum doods played twenty questions and by the end, we had them convinced that romy was CUBAN. they had a brief offer of persian, but did not seem to understand the term, and kept arguing that she looked like an “island girl,” and the island heavy on their little minds was cuba, and only cuba. to keep them happy, we interspersed some spanish in our witty conversation, encouraging them to “andale, andale, ariba!” with that there tire change.

if my memory does not fail me, little miss anti-everything actually worked in the cotton fields for one or two weeks that same summer. it was a magical summer of possibilities – we were at an age where we successfully confounded world fears with dastardly daring, panache, and other-funkily-worded grand attitudes. it would take me many pages to write enough that the sexual energy of that time could be distilled into the one, or two, right words. Quelquefois, il n'y a pas de mots justes.

anyway... the jobs! the hot, sweaty, elevating and demeaning, safe and dangerous work – comingling with our existential confusions, and our out-and-out joy in living. my mind goes to the roches’ plaintive mr. sellack:

Mr. Sellack
( Words & Music by Terre Roche )

O Mr Sellack
Can I have my job back?
I've run out of money again.
Last time I saw ya
I was singing Hallelujah
I'm so glad to be leavin' this restaurant.

Now the only thing I want
Is to have my old job back again.
I'll clean the tables;
I'll do the creams;
I'll get down on my knees and scrub
behind the steam table.

O Mr. Sellack
I didn't think I'd be back.
I worked here last year
Remember?
I came when Annie
Was going on vacation
And I stayed on almost till December.

Now the only thing I want
Is to have my old job back again.
I won't be nasty to customers no more.
When they send their burger back
I'll tell them thatI'm sorry.

Waiting tables ain't that bad.
Since I've seen you last,
I've waitedfor some things that you would not believe
To come true.

Give me a broom and I'll sweep my way to heaven.
Give me a job;
You name it.
Let the other forty-million three-hundred and seven
People who want to get famous.

Now the only thing I want
Is to have that old job back again.
I'll clean the tables;
I'll do the creams;
I'll get down on my knees and scrub
behind the steam table.

**************************
i won’t drive you all crazy with my demented trip down memory lane with the roches... i actually did not start with mr. sellack – no, i began with a pity party driven by the refrain of i am trying not to have a bad day...

it was another night of not sleeping, of actually fighting my way through some kind of dense, heavy fog of fatigue – hearing myself begin to snore, trying to relax and go with it – but twitching back to wakefulness – afraid of sleeping? it was hot because my fever would not *quite* break and i alternated between sweating and burning dry, and because our demented cat marmy has decided to literally stick to me.

and i came into today ungrateful, full of dramatic suffering. i also had to contend with more cat piss – but that doesn’t fit the heroic theme of my wounded travails... thank god fred was sleeping... it gave me time to get over myself somewhat.

as a result of the beginning of this rapid prednisone taper, i was hit with major gastro-intestinal upset and backache, plus a headache. i don’t *do* headaches very well. i also fear addisonian crises -- having had three of them when fighting infections in the past. you've no idea how stupid it feels to completely forget about your adrenal insufficiency and end up in a crisis.

so i started trying to clean up my pitiable pity-party – and into my feeble head sauntered the roches... and the train.

The Train
(Words & Music by Suzzy Roche)

I sit down on the train

with my big pocketbook

the guitar and a sugar-free drink

I wipe the sweat off of my brow

with the side of my arm

and take off all that I can

I am trying not to have a bad day

everybody knows the way that is

Even though my baggage and I

are using up a two person seat

I'm not trying to be funny

but the guy who sits down next to me

is even bigger than that

we are overflowing out of the seat

I can't look at him

he doesn't look at me....

My face is pressed upagainst the window

and through it I can see

the reflection of the train

I spy on the big guy

sitting next to me

he's drinking two beers

and reading the New York Post

trying not to get in my way

everybody knows the kind of day that is

He is miserable

I am miserable

we are miserable

can't we have a party

would he rather have a party

after all we have to sit here

and he's even drinking a beer

I want to ask him what's his name

but I can't cause I'm so afraid

of the man on the train
****************
it has become my pity-party theme song. we’re all of us screwed up and scared, why can’t we turn and share all that we know we share?

because we are all so damned afraid of the man on the train.

love,
retired educator

Pain and Oversize Pink Frames

Oversize Pink Frames by Linda Farrow for Luxe
PRICE: $525
AVAILABLE AT: Aloha Rag
505 Greenwich St.
Soho
212-925-0882

Retired Educator, here. La Belle Bianca Castafiore? Wouldn't you know that she is a migraineur (proprement dit: migraineuse)? And so it is hand-to-forehead, sigh-then-moan, a red-lipped pucker (Chanel Rouge Hydrabase Creme Lipstick in Red N°5) and these big old pink-framed dark glasses, all topped with that blessed paisley turban that announces her migraines like a neon sign. Quel douleur, quel désespoir profond, quelle souffrance! Néanmoins, je ne peux pas la convaincre qu'elle serait infiniment plus heureuse dans sa propre chambre! I cannot convince her to retire to her well-appointed, restful, easily darkened room that just happens to be at the opposite end of our cozy Marlinspike Hall. No, she prefers to suffer in plain view.

I find myself humming quite a different version of her favorite refrain:
"Je ris de la voir si souffrante dans ce manoir!"

In the midst of this mini-petit-micro pain crisis, I checked my correspondance to find the sainted Jim Broatch calmly at work, connecting people with CRPS / RSD to all kinds of possibilities out in the world. It is so easy to lose oneself with this disease -- not just by deciding to saw off one's arm one Saturday afternoon -- but by losing social interaction. As hard as it is to leave a protected environment and risk being jostled, pushed, stepped on, or -- my personal favorites -- slapped on the shoulder or given that well-meaning warm hug by the requisite Church Lady, we have to go out there or totally give in to a life of pain, spasms, contractures, and depression. So God bless Jim and his talented minions for their constant assault on our laziness and fear!

Here is the latest e-alert with details about a recruiting study -- one of the few I have seen that explicitly includes those of us with CRPS Type 2. I was starting to get an inferiority complex and I think we can all agree that I don't need another complex...


Study Currently Recruiting: Neurotropin to Treat Acute Dental and Chronic Neural Pain

Neurotropin to Treat Acute Dental and Chronic Neural PainSponsored by the National Institute of Dental and Craniofacial Research (NIDCR)

Purpose: This study will examine the effectiveness of the drug neurotropin in treating acute pain after tooth extraction and chronic pain after injury to a limb or a large nerve.

Individuals who meet the following criteria should apply:

Three groups of patients will participate in this study: 1) dental patients undergoing removal of impacted third molars (wisdom teeth); 2) patients with chronic regional pain syndrome type 1, or CRPS-I (also called reflex sympathetic dystrophy); and 3) patients with chronic regional pain syndrome type 2, or CRPS-II. CRPS-I is pain that develops after relatively minor injury to an arm or leg, but lasts much longer and is much more severe than would normally be expected. CRPS-II is pain resulting from injury to a large nerve.

Candidates will have a history and physical examination, blood tests, electrocardiogram and, for dental patients, oral examination and dental X-rays to confirm the need for third molar extraction.

Participants will undergo the following tests and procedures:

Patients with CRPS I and II will receive an individualized regimen of physical therapy and standard treatment to control their pain. In addition, they will receive neutropin or placebo tablets for 5 weeks, then no trial medicine for at least 1 week, and then the other trial drug for the next 5 weeks. That is, patients who took placebo the first 5 weeks will take neutropin the second 5 weeks and vice versa. Neither the patients nor the doctors will know who received which drug during the two intervals until the study is over.

Patients will complete questionnaires about their pain, quality of life, and ability to perform daily living activities. They will have various tests to measure pain (such as sensitivity to heat and cold, to an electric current, to a mild pin prick, etc.); to provide information about changes in their condition (such as tests of range of motion of joints and limb size); to measure blood circulation and sweating in the arm or leg (such as measurements of blood flow to the limb, skin temperature, and sweat production), and other procedures.

Contact:
National Institute of Dental And Craniofacial Research (NIDCR)
9000 Rockville Pike
Bethesda, Maryland 20892 United States

Patient Recruitment and Public Liaison Office1-800-411-1222 TTY 1-866-411-1010 prpl@mail.cc.nih.gov

http://www.rsds.org/3/research/neurotropin_research.html

This E-alert was made possible by the contribution of the members of the Reflex Sympathetic Dystrophy Syndrome Association (RSDSA). To learn more about becoming a member of RSDSA, please click here.

15 Open Clinical Trials for those with CRPS/RSD

FIFTEEN OPEN CLINICAL TRIALS for those with CRPS/RSD:

1
Not yet recruiting
Safety and Efficacy Study of Ethosuximide for the Treatment of Complex Regional Pain Syndrome (CRPS) Type I
Condition:
Complex Regional Pain Syndrome, Type I
Interventions:
Drug: Placebo; Drug: Ethosuximide

2
Not yet recruiting
Graded Exposure (GEXP) in Vivo Versus Physiotherapy in Complex Regional Pain Syndrome Type I (CRPS-I)
Condition:
Complex Regional Pain Syndrome Type I
Interventions:
Behavioral: Graded exposure in vivo; Behavioral: Physiotherapy

3
Recruiting
A Study of the Effect of Lenalidamide on Complex Regional Pain Syndrome Type 1
Condition:
Complex Regional Pain Syndrome, Type 1
Intervention:
Drug: Lenalidamide

4
Recruiting
Association Between Focal Dystonia and Complex Regional Pain Syndrome
Conditions:
Focal Dystonia; Peripheral Nervous System Disease
Intervention:

5
Recruiting
Effect of Delta-9-Tetrahydrocannabinol on the Prevention of Chronic Pain in Patients With Acute CRPS (ETIC-Study)
Conditions:
Complex Regional Pain Syndromes; CRPS
Intervention:
Drug: Delta9-Tetrahydrocannabinol

6
Recruiting
Evaluation of Autonomic Cardiac Function in Patients With CRPS
Condition:
CRPS (Complex Regional Pain Syndromes)
Intervention:

7
Recruiting
Capsaicin-Evoked Pain in Patients With CRPS
Condition:
CRPS (Complex Regional Pain Syndromes)
Intervention:

8
Recruiting
The Efficacy of Motor Cortex Stimulation for Pain Control
Conditions:
Neuropathic Pain; Phantom Limb Pain; Stump Pain; Brachial Plexus Avulsion; Deafferentation Pain; Facial Pain; Complex Regional Pain Syndrome
Intervention:
Device: motor cortex stimulation

9
Recruiting
Evaluation and Diagnosis of People With Pain and Fatigue Syndromes
Conditions:
Fatigue; Fibromyalgia; Pain; Complex Regional Pain Syndrome; Reflex Sympathetic Dystrophy
Intervention:

10
Recruiting
Evoked Fields After Median and Ulnar Stimulation
Condition:
Complex Regional Pain Syndromes
Intervention:
Procedure: Evoked fields before and after a local block (Xylocaine)

11
Not yet recruiting
Regional Anesthesia in Combat Trauma Improves Pain Disability Outcomes
Conditions:
Complex Regional Pain Syndrome Type II; Post-Traumatic Stress Disorder; Depressive Disorders; Anxiety Disorders; Substance Abuse
Intervention:
Drug: Opioid Analgesics

12
Recruiting
Double Blind Placebo Controlled Study of Outpatient Intravenous Ketamine for the Treatment of CRPS
Condition:
Complex Regional Pain Syndrome
Interventions:
Drug: Ketamine; Other: IV NSS; Other: Normal Saline

13
Recruiting
Neurotropin to Treat Chronic Neuropathic Pain
Conditions:
Causalgia; Reflex Sympathetic Dystrophy
Intervention:
Drug: Neurotropin

14
Recruiting
Susceptibility to Chronic Post-Traumatic Extremity Pain
Condition:
Chronic Pain
Intervention:

15
Recruiting
A Pilot Study of Switching From One Pain Medication to Another (Opioid Rotation)
Condition:
Pain
Intervention:
Drug: oxymorphone IV

As usual, thanks to Jim Broatch of RSDSA for the electronic alert. Trials were reported at http://www.clinicaltrials.gov/ -- under the search term complex+regional+pain+syndrome.

E-Alert from RSDSA

La Belle Bianca Castafiore ici! Zeee Retired Educator, she is -- comment le dire? -- occupée? Oui, c'est ça, elle est très occupée. Et puisqu'elle est... she is so très busy this matin, this morning, she ask, she asked to me this favor. Pffft! Elle m'a demandé de faire afficher ce petit article au sujet de... DEVINEZ! DEVINEZ! Il s'agit toujours de cette affreuse maladie, le "CRPS/RSD"! Ooooo, j'en ai vraiment marre... Why does she not never make the spotlight upon -- ohhh, sais pas -- MOI, par exemple? Mais non! I, me, she does not find enough of the interest! Harrumph. Alors... read this below and love it, learn of this disease ridicule! Me, I am doubting that she, er, qu'elle puisse passer *un* jour sans en faire mention! She has not the ability to not talk of it!

[Post-Publication Note from Retired Educator: Well, that was quite the useless introduction, La Belle. sniff. And, for the record? I will be happy to go one day (or two, or three!), without mentioning soit CRPS soit RSD! All YOU have to do is refrain from that damned refrain: Ah je ris de me voir si belle dans ce miroir! D'accord? Alors... le jeu s'en fait. -- R.E.]

{Oh, and please find below an interesting write-up on brain imaging and... well, and... that disorder I am all the time running my mouth on about... but never to the point of obsession. I can stop talking about it at any time. Anywhere. Now. Here. For example. -- R.E.}

E-Alert from RSDSA

Imaging Study Of Pain Sheds Light On Mystery Condition

Harvard School of Public Health

The first-ever functional brain imaging study of chronic pain conducted in children, done by researchers at Harvard-affiliated McLean Hospital and Children's Hospital Boston, has shed new light on a mysterious condition known as complex regional pain syndrome (CRPS) and offers hope for a better understanding of the disorder in both children and adults.

The study, supported by the Mayday Fund of New York, is the result of a joint effort between researchers at Children's who treated the patients in the study and the P.A.I.N. (Pain & Analgesia Imaging and Neuroscience) group at McLean, who conducted the imaging tests.

"Studying pain in children offers us insights into how the brain may cure itself because the young brain is so adaptable relative to the adult brain," says David Borsook, MD, PhD, director of the P.A.I.N. group at McLean, and senior author of the study published in the current issue of Brain (abstract). "This may offer very important insights into the development of new therapeutic approaches to chronic pain-a condition that more than 50 million Americans suffer from with relatively little in terms of highly effective therapies."

CPRS is a disorder of the peripheral nervous system characterized by severe pain, hypersensitivity to stimuli, poor circulation, abnormal sweating, muscle atrophy, joint problems, movement disorders and cognitive changes, among other symptoms.

"This is a significant pain problem that often leaves individuals incapacitated, wheel chair-bound and limited in their physical abilities," notes Borsook, who added that in the pediatric population, girls are affected more frequently than boys. "It can be difficult to diagnose and without proper treatment children and adults living with CPRS live in absolute agony."

Typically, the condition stems from an initial injury, usually the hands or feet, and spreads sometimes to the opposite limb or side of the body, even to the entire body. It is more common in women and is now being seen in some girls after they have suffered sports injuries.

"CRPS is a frightening illness because it can develop as a result of a seemingly trivial injury," says Borsook. "For example, a 14-year-old girl can sprain an ankle during a basketball game, but what seems like a common and easily treatable injury can develop in to CRPS, causing extreme pain throughout her body."

In their novel study, the McLean and Children's researchers developed the first model of the illness that allows them to examine the efficacy of interventional treatments."

"The central nervous system imaging of pain in pediatric patients is a nascent development within the increasingly productive field of functional MRI (fMRI)," explains Alyssa Lebel, MD, senior associate in Pain Medicine and Neurology at Children's and first author on the paper.

"This non-invasive technique provides a unique window into regions of the brain actively engaged in pain transmission and modulation. Contrast to adult, pediatric patients are still developing these regions, along with their connections, and may show fMRI patterns of activation in response to pain that differ from adults. Additionally, children often recover symptomatically from painful disorders, such as CRPS."

Lebel notes that the research team's data provides early information about provocative changes in central nervous system (CNS) circuitry in symptomatic and recovered patients with CRPS, as well as demonstrates that the technique is tolerable and acceptable to children with neuropathic pain.

"We will continue to study pediatric patients with CRPS and with other painful disorders, such as headache, to begin to define the pediatric CNS circuitry of acute and chronic pain," says Lebel. "Such information may eventually allow current and novel therapeutic interventions to target the CNS processes ultimately responsible for the complex sensory and emotional experience of pediatric pain."

In children, the symptoms often appear to resolve in time, while in adults resolution is less common. Treatment is generally limited to pain medications and physical therapy. Because the symptoms in children frequently reverse, the researchers decided to image the brains of children with the condition both while symptoms were present and then after the symptoms had gone away-a comparison that cannot be done in adults.

"Our team took advantage of the opportunity to look at children in the pain state and the non-pain state," said Borsook, who is co-director of the P.A.I.N. Group of the Department of Radiology at Children's with Lino Becerra, PhD. "We were trying to define what happens to a changing brain as it adapts over time in those afflicted with this syndrome." A key advantage of imaging children is that they do not usually have other illnesses and are not typically on other medications that might influence the findings, he adds.

"This paper is not just a first for kids, but also has implications for understanding the adult condition," he said.

The imaging studies revealed some unexpected findings. Most importantly, the images taken in the non-pain state showed that brain recovery was not complete.

"The brain changes seen during the pain state don?t disappear during the early non-pain state. As a result, subsequent injuries could rekindle the condition or other problems could occur later," Borsook warns.

Further studies will seek to evaluate how long it takes brains to recover fully and determine the efficacy of treatments.

"Our results suggest significant changes in CNS circuitry in pediatric patients with CRPS may outlast the signs and symptoms," report the authors. They conclude that even with a more rapid resolution of pain in children, the effect of the nerve damage and other changes that occur in CRPS at a time of development of brain connections may have prolonged effects upon brain circuitry. This could impact upon pain processing in these individuals later in life.

This initial research has been pivotal in establishing a newly formed program P.A.I.N. Group at Children's using fMRI to evaluate pediatric pain disorders; the program has been supported by the hospital and the Departments of Radiology and Anesthesiology.

"It brings new research to understanding acute and chronic pain disorders in childhood," says Borsook. "Furthermore, it integrates programs that are already at the forefront of pediatric pain treatment (such as the newly established Mayo Pediatric Pain Rehabilitation Program at Children's) with modern neuroimaging facilities recently established at Children's Waltham."

http://www.rsds.org/5/news/2008/EMaxHealth_08012008_120.html

This E-alert was made possible by the contribution of the members of the Reflex Sympathetic Dystrophy Syndrome Association (RSDSA). To learn more about becoming a member of RSDSA, please click here.

Outsourcing

Simply because I can -- my rationale for almost everything these days -- I subscribe to MedWorm and receive a news feed for "CRPS" and a few other stray acronyms, synonyms. Every afternoon, I cull through whatever the offerings are. Usually, though, I will have already been alerted about things of substance by an email from Jim Broatch, Executive Director of RSDSA, a man with whom I have never spoken, and with whom I have never corresponded. Our doings are all one-way. Some time later, from a few days to a week, I am apt to receive some overlapping information from Anthony Tobin, grandfather and researcher extraordinaire. By the time I hear from Tony, another man with whom I have never spoken, and with whom I have never corresponded, the material referenced has the advantage of having been vetted by a number of "experts."

There is a difference, of course, in the content coming from Broatch & Tobin, and that sent winging my way by a random news feed.

Consider what I received today from each source.

Jim Broatch forwards an article from RSDSA's interactive content editor Jennifer Hlad entitled "Spinal implant helps Marine deal with pain from Iraq injury." I was immediately reminded that one of the rare positive results of war is a rapid advance in the treatment of traumatic injuries, and of wounds inflicted by whatever horrid new weapon has had its way in the current round of atrocities. The U.S. - Iraq War will be remembered for countless brain injuries and the emergence of PTSD as a terrible time bandit. IEDs have made severe orthopedic and neurological injuries to extremities an everyday threat. I remember wondering whether the incidence of CRPS would rise due to the prevalence of those potent and insidious homemade bombs. I guess it did.

It is not coincidental that the first sustained modern notice of CRPS dates from the Civil War.

Anyway, here's an excerpt of Hlad's article, which can be found at the RSDSA website:

Beep. Beep. Ahhh.

Bobby Joseph straightens his back, letting out a sigh of relief as electrical signals pulse through his leg, giving him respite from the piercing pain that has racked his body since Nov. 11, 2006.

"Oh, yeah," he says, grinning.

Before the surgery, 27-year-old Joseph woke up in pain every morning. Every step with his left leg brought with it a "shocking, stabbing pain." The drugs and the nerve blocks helped, but they didn't make the pain go away. Still, when Dr. Rick Foltz first proposed implanting a device in Joseph's spine to send pulses through his body, Joseph was skeptical.

"I've seen Robocop ... I was like, I don't want to be half man, half machine," he said.
Then he did the seven-day trial.

"I felt like I was Superman," he said. "I loved it. I wanted the real thing right then and there."

In early July, Foltz and another surgeon put the device in Joseph's spinal cord. Wires and electrodes send electric signals to his nerves, changing the way the pain is transmitted to the brain, Foltz said. Joseph controls the signals with a remote device, changing the pulses based on whether he is sitting, standing or walking.

"It is basically tricking your brain, so there's no pain there," Joseph said. "It is like a pulsing massage."
Joseph was three months into his fourth deployment, patrolling a street in Anan, Iraq, when the bomb went off. The blast blew him from the road's median, as shrapnel pierced his legs, his face, his arms.

"It ripped me apart," he said, showing off the massive scars on his left thigh and calf.
[....] Literal walking is a different challenge. Joseph suffers from complex regional pain syndrome, a syndrome in which a patient has pain that is disproportionate to the wounds. The syndrome is more common in patients with severe injuries, and Foltz said he sees more of it in wounded warriors because of their injuries.

In addition to the pain, patients may be so sensitive they can't even stand to have a bed sheet brush their leg or arm, Foltz said.

"It's very difficult to treat," Foltz said. "If we don't treat it right away, it can turn into a debilitating, long-term pain syndrome. So when the wounded warriors come back, we want to be very aggressive in the treatment, to get them better as fast as we can."

That's the nature of an electronic alert from Jim Broatch -- news of
progress, legislation updates, research fundraising efforts, or maybe the sharing of a new blog by one of those Obnoxious Incredible People With CRPS.
Although I've not heard from him for a few weeks, I might get some of the same from Tony Tobin of Essex, England, who was for a long time my sole source to research and the inner workings of the virtual CRPS world. He runs a news service through Yahoo! -- the impetus for which was: "Have started research into RSD after my 9 Yr old Granddaughter was diagnosed with it. Update. Said 9 yr old is now 13 and is doing well. I am proud of her." I said "some of the same," but really, what comes from Tony are vetted things -- things that he has personally looked into, things referred to him perhaps several times over from people he trusts. He is into whatever works, and is open to arguments about an idea's potential. From Tobin I get things like information on Mirror Box therapy, a journal paper, Lymphocyte Subsets and the Role of Th1/Th2 Balance in Stressed Chronic Pain Patients as well as an invitation to discuss the role of medicinal marijuana in controlling CRPS pain.
*cough*
When I am fielding the posts from the RSDSA Executive Director or the Research Grandfather Extraordinaire, I have a feeling of connectedness. Sure, I know that much of the time, material is being dumbed down for me... assumptions of my capacity for unpacking anything remotely scientific are made, and I am presumed lacking. To that end, I have my purely scientific sources. To wit: my various little Med Worms.
This afternoon I went from wanting to tie yellow ribbons around oak trees, and checking out the vibrant blogs of lithe young blond people mastering pain by sheer force of will and disposable income to... well, that place you go when you are sent this, an abstract of an article in Mediators of Inflammation:
Case Report
Expression of Endothelial Nitric Oxide Synthase and Endothelin-1 in Skin Tissue from Amputated Limbs of Patients with Complex Regional Pain Syndrome
Background and Objectives. Impaired microcirculation during the chronic stage of complex regional pain syndrome (CRPS) is related to increased vasoconstriction, tissue hypoxia, and metabolic tissue acidosis in the affected limb. Endothelial dysfunction is suggested to be the main cause of diminished blood flow. The aim of this study was to examine the distribution of endothelial nitric oxide synthase (eNOS) and endothelin-1(ET-1) relative to vascular density represented by the endothelial marker CD31-immunoreactivity in the skin tissue of patients with chronic CRPS. Methods. We performed immunohistochemical staining on sections of skin specimens obtained from the amputated limbs (one arm and one leg) of two patients with CRPS. Results. In comparison to proximal specimens we found an increased number of migrated endothelial cells as well as an increase of eNOS activity in distal dermis specimens. Conclusions. We found indications that endothelial dysfunction plays a role in chronic CRPS.
One arm! One leg! Arg! There is a reason why I am more suited for the scientistic.
(Marmy adds a particularly strident Ack! Ack! La Belle Bianca Castafiore has been stricken with tonsillitis, and her neck is wrapped in flannels, the world temporarily stripped of her opinion. Nous esperons tous qu'elle se sent mieux bientôt! N'est-ce pas? tousse tousse N'est-ce pas?!)

Faust Before Coffee

For someone who loves language, to be reduced to a series of acronyms is beyond insulting. For the divine Bianca Castafiore -- such a fate would be a horror, although I suppose it would ultimately be recuperated as aria, as Italian air.

Me, I do not often wake "in the morning," but to claim some measure of normality, I will prepositionally use the phrase (precious, precious, much too precious).

I'm sorry about that. I cannot, however, allow you to touch my sentence.

Get the hell away from my sentence!

Du calme, du calme, ma chère...

When I wake in the morning, there is no thunder of trumpets in my brain announcing the triumphant news that I remain the inimitable Bianca Castafiore -- as in "(blow blow flap lips) congratulations! you remain (lip buzz) Bianca Castafiore (slowly slide the pitch)!"

No, when I wake, I make no sudden sound, no sudden movement, and pray that none are made on or around me. The cats that have kept me safely in the bed all scatter, willing to let me face the risks of our little pocket of weak gravity in their strong feline hope of kibble. Bianca, she would break into song, she would dance the mirror before her Bianca-face, singing "ah, je ris de me voir si belle dans ce miroir..."

It is a rare woman who can bring off Faust before coffee.

My right hand snakes toward the bedside table and snags first the hillaryclinton.com red, white, and blue water bottle, and then the other (more amber) bottles of momentary import: of percocet, of ibuprofen.

There are days I need help taking the pills, and assistance drinking the water. But those days are rare. Mostly, I medicate myself by myself.

Not quite alone. There *are* those cats: Marmy, Dobby, and Sam-I-Am. Were my bed a raft out on the sea, those three would be... sharks, circling. They know from experience, though, that it will be a good half-hour before I budge, and they are kind. While we wait for the medicine to kick in, we gently pet, we purr. Yes, we vibrate!

Bianca Castafiore *only* sings L'air des bijoux of Marguerite from Gounod's Faust; She sings it loud and she sings it often. As she is not called on to sing a high C, we do not know if she can shatter glass. We do not know if *she* vibrates.

"Ah, je ris, de me voir si belle, dans ce miroir..." O! Marguerite! Beware! It is Méphistophélès who gives you jewels and a mirror! Infernal, insightful, so clever -- the devil. And there you are, decked out and loving what you see.

Looks can be deceiving. This post will bear the label of "The Acronyms." The acronyms to which I will usually be referring are:

SLE = Systemic Lupus Erythematosus
CRPS/RSD =Complex Regional Pain Syndrome/Reflex Sympathetic Dystrophy
AVN = Avascular Necrosis
AI (times two: AI! AI!) = Adrenal Insufficiency & Aortic Insufficiency

Lupus is often treated with steroids, judiciously, it is hoped, as prolonged use of corticosteroids involves a good number of significant side effects. Somehow, I ended up on high doses of steroids over much too long a time. Not always for SLE. Sometimes for CHF. Sometimes for asthma.

As the kids say: Whatever.

It is possible, even probable, that treating my SLE in that manner resulted in a killer case of avascular necrosis, AVN. Don't suggest that to your average medico, though, as it will cause them to go dark and mutter something that sounds like "informedconsentinformedconsent..." and then they poop their pants.

AVN also serves as the acronym for an adult video organization. Porn. Not erotica. Pure unadulterated smut. The good stuff.

With AVN, the bones, in layman's terms, errr... well, they rot. They become necrotic.

(Yes, you genius! Exactly! As in necrosis. Very good. All of that Latin eventually pays off -- you can decipher much medical terminology thanks to the etymologies still swarming within the brain pan, that great bucket of os!)

It hurts quite a bit. Untreated, the involved joints eventually collapse. I had some joints replaced -- a few successfully -- a few badly. Then, when further treatment became impossible, my life was in large part subsumed by the pain of bone-on-bone. Bone-on-Bone like Stratford-on-Avon.

Ashton-under-Lyne. Bexhill-on-Sea. Stoke-on-Trent.

Where was I?

Tête de Hergé?

The arm that inches toward the water, the hand that pries the pills from their plastic home --they hurt more than I have the capacity to express.

The pain of AVN, though, pales next to the pain of CRPS/RSD.

There will be time for the packing and unpacking of these alphabets. For now, I am content to remember that first half hour, each minute that much closer to movement, to the chachacha of the hobble to the bathroom, the graceless kerplunk into the power chair.

Marmy, Dobby, and Sam-I-Am precede me and lead the way to good chow, good kibble, and mugs of snooty white liberal fair trade coffee, steaming. We are deceitful in our appearances; We hum as if we could sing; We smile as if we mean it; We feel so much more Bianca Castafiore now, and so much less a dumpy, dull, decrepit educator, retired.

"Ah, je ris de me voir si belle dans ce miroir..."

CRPS/RSD

Among the first words that Faust sings out are these:


Le ciel pâlit; devant l'aube nouvelle
La sombre nuit s'évanouit!
encore un jour, encore un jour qui luit!
Ô mort! quand viendras - tu
m'abriter sous ton aile?





Eh, bien! puisque la mort me fuit,
Pourquoi n'irais-je pas vers elle?
Salut! ô mon dernier matin!
Salut! ô mon dernier matin!





J'arrive sans terreur
au terme du voyage;
Et je suis, avec ce breuvage
Le seul maître de mon destin!





What is he moaning and kvetching about, and in such high gallic italic manner? He's being a big baby, signaling his intent for this day to be his last, his poison at hand. Faust is one of those people -- any little thing goes wrong and suicidal ideation is the name of the game. I closed out this little bit of select verbiage with his claim to be the "the (only) master of [his] destiny."





Were that the case, dear Faust, your previous attempts at dying would have succeeded, hmmm?





I tell you, friend, beware of those to whom the exclamation point comes easily, for they are likely victims of emotional lability, a little touch of insanity, their personality... borderline.





But Faust does not want to die. He wishes, mostly, to avoid pain, to be young again. The guy just wants to have fun.





And my darling Bianca fairly screams for Marguerite, always the same couplet, always rather awfully: "Ah! je ris de me voir si belle dans ce miroir!" A dependable narcissistic creature -- Bianca more than Marguerite!





I am somehow acutely ill on top of all my chronic mess, and this involves a seemingly unending fever.





The first symptom of my fevers is utter despair, and tears. Not so distant, really, from the pitiable plea for death I opened with, this stormy post-Independence Day: <<Ô mort! quand viendras - tu m'abriter sous ton aile? Eh, bien! puisque la mort me fuit, Pourquoi n'irais-je pas vers elle?>> You must remember that I do not share the Faust of Goethe! You must keep well in mind that this is the bubblegum of Gounod, source of Marguerite's bejeweled fantasy, keeper of my beloved Bianca's obsidian obsession, all sharp and shiny.





I feel *so* alliterative this afternoon.





I just happened to have a doctor's appointment this week, as I was getting more and more lost in pain and fever. Normally, I would have hunkered down at home, armed with appropriate medicines, and given myself over to Wimbledon coverage, old UFC matches (may God bless Forrest Griffin tonight!), and game upon game of Mahjong and Bridge.





The pain of washing, dressing, riding in the car (dear Fred at the wheel, Bianca struggling to chew through her red bandana gag), and even sitting in the waiting room -- I balanced all of that pain with the potential help my talented internist might provide. He's a great doctor.





No, be honest.





I needed a healthy dose of sympathy.





It turned out my thermometer was defective; My temperature was a good degree higher than it registered at home. It turned out my heart was racing along at too much of a clip, averaging 128 beats a minute, synchopated time. It turned out that I had little coping ability left.





When I first made mention in this rather sorry blog of The Acronyms that shorten so much of my life, I felt jocular, cute, a regular tease. No more.





The pain that I am in on a daily basis would make most of you desperate within an hour. Try to imagine such a pain not ending. The claim of such unending and severe pain earns many a rolled eye among the medical types with whom someone with CRPS/RSD has to deal. Odd, that the medicos tend to think that it is they who are "putting up with nonsense," when, in actuality, it is usually the other way around.





As I am hurting a lot this very moment, as my fever is taking its afternoon hike, I will whine on. As I noted initially, whose blog is it, anyway? My good doctor found that I am in a lupus flare -- and oh, how I wish the designation "flare" could be washed clean of the disrepute it currently bears -- and this lovely exascerbation has caused a worsening of the avascular necrosis present in all of my major joints (and some of the myriad minor). Worse, it has kicked the pain of CRPS/RSD up a notch or hundred.



I keep threatening you with that acronym, don't I? Much as my beloved Bianca sings the sad song one more time.



Complex Regional Pain Syndrome, Types 1 and 2, is the updated designation for the former Reflex Sympathetic Dystrophy and Causalgia. All of my limbs are involved, as is my face (the newest bit of fun). My right side is much worse than the left, although my left lower leg is trying for equality at an alarming rate.



Mine is a mixture of Types 1 *and* 2, in that I have demonstrable nerve damage/lesions in my right leg, left hand, and right arm. My left leg shows no such damage -- it seems to be going along just for the fun of it. My face has not been subjected yet to testing -- my nutty neurologist does not seem to want to subject me to facial shocks and needling, for which I am grateful.



There are some mental aberrations going on inside this head, too. Pure emotional garbage. As in my periodic insistance that we test and retest in order to find what we already know. It just comes over me, about once a year, this idea that maybe if we retest, maybe if we repeat that triphasic bone scan, it won't show as much involvement as it did the first time.



I also have been bothered by the distinctions between CRPS Type One and CRPS Type Two. All the research seems to have bearing only on the former RSD, now Type One. You know, all those people out there, suffering, yes, but suffering without demonstrable proof.



I am very ashamed of this example of my own discrimination.



You see, I am a fan of the many medical blogs, an interest that, until the last few weeks, was confined to the work of a few doctors and nurses whose incredible literary gifts allowed me insight into the frustrations and joys of their world, into which I have so often been an unwilling interloper. Plus, they are often a regular hoot.



Then I stumbled onto a scene reminiscent of a feeding frenzy of sharks drawn by chum.



Let me say, straight away, that I get it, that I understand the immense frustration of dealing with inveterate drug-seekers and general abusers of the system (the emergency room, in particular). I also get both the need, and the right, to *vent* this immense frustration.



Still, I was ill-prepared (That might be an intentional pun, I don't know, those moments are so fleeting with me.). I was ill-prepared for the venom, the hatred, the ridicule of people claiming pain, claiming fibromyalgia or some other auto-immune disorder that has yet to have diagnostic criteria.



Believe me, I don't have sympathy for the person lounging on a guerney, demanding a sammich or yakking on a cell phone, then claiming a 15 on the accursed 1-10 pain scale. Nor do I feel much for the woman who comes in the wee hours of the morning complaining of a wicked fibromyalgia flare-up, wanting/needing medication but amazingly allergic to the most appropriate non-narcotic ones. Neither one is making acceptable use of emergency facilities.



And really, I don't expect sympathy at all from emergency room personnel. Compassion, maybe, though at this precise moment I cannot find the words to define the difference. Anyone?



Back to me and my trek to the doctor this past week. Whose blog is it anyway, right? Right!



It would not have been inappropriate, I was told, to have gone to the Emergency Room over the previous weekend, when the pain had become so bad as to occasionally keep me from being able to stand, and when the fever first truly spiked.



Really?



What would the medical professionals have muttered under their breath?



I have had the misfortune to end up in ICU, on a ventilator, four times in the past three years. After the initial experience, it was absolutely a necessity that I be unconscious before being plopped down in any ER, any hospital.



I have many war stories that would shock, but for now? Just one story, and one that it will probably take another person with CRPS/RSD to understand: Still on the ventilator, but conscious, alert, oriented, the Nurse-From-Hell delights in informing me that CRPS/RSD does not exist, that I had spent the previous 6 years misdiagnosed. Her findings? I had massive cellulitis (in my purple, ice cold feet) and was lying about the extreme sensitivity and degree of pain. "I seen this before, up in Henry County. Yep, cellulitis, that's what this is."


My beloved Fred, following the whispered instructions of my beloved Bianca, had met with the hospitalist and the charge nurses, making sure that they all knew to take extra care not to manhandle my extremities, also letting them know that my "normal" should not make them freak out and order a slew of testing for clots or surgery for necrotizing fasciitis! Yes, my legs might be purple and ice-cold, the source of intense pain just by the weight of a sheet, but that was par for the course. Bianca directed him to make polite signs which he then posted on the bed and on the door to my little ICU cubicle.



Ah, but... "I seen this before, up in Henry County... cellulitis... and it don't hurt that bad."



She had a little game.



Remember that I cannot talk, all I can do is hope my eyes are bugging out enough for her to take pity.



She takes her hand, points with the index finger to a particularly swollen and purple section of my right foot. She laughs and brings it s-l-o-w-l-y toward my skin. She laughs some more, she wants to know if it hurts yet, she taunts, asks whether I want a "little mor-pheene" to ease the pain of her upcoming finger poke. The tension and fear have built up in my head to the point of desperation, and I do what she, no doubt, wants me to do -- I lose it. I flail, I kick, I scream -- the alarms go off -- cardiac, O2 sats, the vent. Other nurses and respiratory technicians stream in.



They see a patient gone berserk. The Nurse-From-Hell winks at me. She is my nurse twelve hours of the day for the next 3 days. I am extubated but cannot bring myself to make a complaint. Who am I compared to her?



So as my good doctor gently chastises me for awaiting my long-ago scheduled appointment with him instead of seeking to be seen on an emergent basis, I know inside that I will never willingly see a nurse or doctor who doesn't have some proficiency with CRPS/RSD, AVN, SLE, and all the other partridges in my pear tree.



Faust gives lip service to suicide. I don't do that.



I'm on a very high dose of steroids -- All Hail Prednisone. This on top of the cortef to treat my profound adrenal insufficiency. I think there may be a post or two on stress-dose corticosteroids but, believe me, I will try to refrain.

The pain? I would fix it at an 8. I never claim a 10 because it seems, by definition, impossible. Plus, I want to keep my options open.



Where is my damn sammich?



Ah! je ris de me voir si belle dans ce miroir!

*The photo is of my right foot, in spasm -- and in one of my sexier shades...