Thursday, October 13, 2011

Going up, again.

Repost from 7/22/2010 as recent events have resurrected The Elevator Dream. Not the act of dreaming, of course, because that would imply sleep. No, what has brought the demons back, today, is my need of money. How crass, you may be thinking. No luck with that Gratitude Journal, huh? There's nothing crass about needing money and being too ill to work, too disabled to labor, too unreliable to front a classroom. I know the party line. I know I am blessed to have private long term disability insurance. In the world of blessings and gratitude, hell, I am touched by grace just to be alive. Yet there are days, even whole years, where my inability to effect financial change drags down my health, my soul, my family's health, my family's soul. Somewhere along the line, I bought into the crap that disabled sick people are throw-aways, that I am a throw-away. I may live, but I may NOT live well.  I may live, but to others' standards.  People are deciding my relative worth every day, in ways I am only now beginning to understand.

Left to certain political audiences, I don't merit life, even.


And as I am less and less inclined to worship at the correctness altar -- even with all its delectable old men's wrinkled butt lined up at a kissable level, at the worship ready -- my "options" will soon be limited to a point that will, definitively, take my breath away.

Grader Boob was informed today that he'll be unemployed next semester; 
Fred needs cash to tend to very important Fred-things; 
 Bianca needs a new pair of shoes; Miss Marmy Fluffy Butt prefers the more expensive litter; 
and Buddy the Kitten has decided to be a Maine Coon and will not stop growing for at least three years. 
These are people [well, mostly people] to whom I want to turn
 in my *fullness*, not this perpetual emptiness of almost-can.  


As I sought to relax, it was, unfortunately, the screeching Dr. Sween who provided the audio portion of
 my mental exercise, and I found myself wanting to screech back.  
If putting up another repost keeps me from breaking into full-screech mode tonight?  Small price to pay to get to tomorrow, sane.
 I've got to get out of this damned elevator. 
  


Chuckle.

Remember my recent post on the IASP and the movement toward an improved instrument of diagnostic criteria for CRPS? No?  Well, you can read it here.

These optimistic good folk are at it again, as they now take on "wait times." May their optimism collide with reality in a non-distant future!  Blessed are these forces, tasked with improving our lot!

Give their latest a quick read: The International Association for the Study of Pain Task Force on Wait-Times.

Weary giggle.

Weary sniff.

Yes, as usual, I confront the helping hands of scientific task forces and medical recommendation-makers with my own effed-up brand of real and actual appreciation, spiced with frustration and a dash of jealous resentment.

I appreciate and do my best to broadcast all progress, doing due diligence, working to stay openminded when the work challenges my beliefs, trying to stay humble and happy when the researchers and medicos arrive painstakingly at what seems so very obvious.

In my world, the obvious does not have to undergo the rigors of proof.

I cannot deny the surge of anger I feel, knowing how the system that now teeters and totters its way toward progress, totally let me down back when I needed clear diagnostic criteria and some guideline hammering home the need for quick diagnosis and faster treatment. At least these bitter moments are fewer now, more quickly suppressed, and almost completely consigned to my sleeping hours.

So...you want to know the recommendation from the IASP regarding level of alarm and desirous wait time in new CRPS cases?

Are you sure?

They classify a new case of CRPS as "Most Urgent."
They recommend a wait time of no longer than "one week."

Mwa ha ha!

Having had a "classic presentation," which politely presented itself in a hospital setting, even, you'd think I would have had a great shot at early, correct diagnosis, or, at least, a correct early referral to an appropriate specialty -- neurology or pain management.

Well, of course, I did.  And I did not, as well.

Unfortunately, the hospital (with its specificity of place, persons, and situations) was the direct cause of my CRPS, and so: Lo! Hark! Why am I still surprised to realize that "it" consciously, and with premeditation, condemned me to a life of pain and disability?  So what if they successfully deferred my diagnosis for over 19 months?

I managed to put the details of my CRPS story in a blog post recently.  It may or may not clarify things were you to read that first!

I still dream dreams of being in the elevator of one of the Doctors' Buildings attached to the hospital, on my way to... I don't know where. I am studying the buttons, trying to remember what floor I want. Slowly, I become aware of someone else in the elevator, someone whose white coat is visible out of the corner of my eye.

It is, most often, Dr. Sween. That's kind of not fair, as all he did was obstruct my treatment and -- aside from that little bit of malpractice -- abuse me, emotionally. He told me his tale of woe -- how his department had to suffer the indignity of a state-level investigation because I had the unmitigated gall to report a Sentinel Event that went unreported by a half-dozen doctors, dozens of nurses, and the entire SJHA hospital administration. He scoffed at me when I began to cry over the fear I had of the future -- no possibility of ever teaching again, ever earning my way, supporting my family. It had not dawned on me, then, that I would suffer physically forever and anon. It had not dawned on me precisely because my experience precluded the possibility for that much pain to endure. Who'd a thunk it, outside of a medical professional or two?

Courtesy of The Joint Commission:

A sentinel event is an unexpected occurrence involving death or serious physical or psychological injury, or the risk thereof.  Serious injury specifically includes loss of limb or function.  The phrase, "or the risk thereof" includes any process variation for which a recurrence would carry a significant chance of a serious adverse outcome.  Such events are called "sentinel" because they signal the need for immediate investigation and response.
Sween yelled that there was no way I had suffered an adrenal crisis due to a failure to premedicate (also intra- and post- medicate, but I don't want to seem picky).  It just wasn't possible and anyone who thought so did not know what they were talking about.  And, certainly, the person ill-mannered enough to actually go into complete adrenal failure was a person to be dismissed and ignored.  As soon as the nitwit navigates his way out of cardiac and kidney failure, squeezes by the dangers of that hospital-acquired infection, 'n his heart rate sees the underside of 160, that is...

Of course, my mind wandered to my endocrinologist, but I am sure that's not whom he meant!  Not the doctor who came in one night -- a few weeks after the initial failure to medicate -- and found me "altered" enough, and complaining of those vague, ridiculous symptoms (weakness, diarrhea, lower back pain, craving salt) to warrant ordering an immediate cortisol level... and found a level of .05 mcg/dL. That's POINT ZERO FIVE.  That's right, he documented another failure to medicate -- the one that you swear has no discernible impact on adrenal function -- and then he documented the result.  We keep that lab result in archival preservative materials, and the Cistercians-Next-Door are guarding it with the same dedication they bring to the protection of Jesus' Foreskin, their greatest relic.

So *bleep* you, and your department, Dr. Sween!  Your discomfort at being investigated came and went;  Your means of livelihood are intact;  Nothing too bad happened to you. You are the SJHA Poster Boy!

*Bleep* you.  And *bleep* your Mama, too.  How you loved to tell me how you loved teachers.  "I come from a family of teachers.  I know how hard you work!"  No problem loading me up on ungodly amounts of Oxycontin -- but see that I was diagnosed and treated in a timely fashion for a severe and disabling neurological disorder?  Hell, no!

Next, I catch a glimpse of a white coat so starched that it looks to be of marble, a coat more brilliantly white than... well, white. It always turns out to be Dr. Kelman, the doctor most likely to form opinions according to the direction of the prevailing breeze upon his spittle-drenched index finger. Truly a bad doctor. I really mean that. Dr. Sween? He is capable of being a superb doctor. It's basically his choice. Dr. Kelman? Poor thing, he can't help himself.  Plus, I believe he may be a sociopath. I'm not entirely sure about that yet.

Almost, but not quite.

As the neurologist, it should have been evident what he was dealing with -- an emergent case of CRPS. ("Classic." "Textbook." That is how the neurologist who did make the diagnosis described my case, 19 months later. There was nothing difficult or bizarre in my presentation.)  Doctor Kelman, though, is not in tune, not up with, such medical niceties... but man-o-man, is he ever atune to the niceties of MedMal law and knows to whom he owes allegiance. In case you are wondering -- he was the mouthpiece for the hospital. The sequalae I suffered after a totally preventable Addisonian crisis and a fall in ICU that fractured several bones, concussed my one head, and introduced weeks of internal g.i. bleeding, etc.? They were laughable (I think that because he laughed...) and due to "emotion." My left hand was in the shape of a claw, spasming, too painful to touch... My right leg was in deplorable condition, rotating outward, hugely swollen, reacting to the movement of air with ugly recrimination -- forget how it felt when actually poked or gripped for pulses...

He did not even speak *to* me. Dr. Kelman stood at the foot of my bed -- indeed, he once bumped the bottom of my right foot and laughed at my reaction (in addition to being emergent CRPS, the ankle was fractured) -- he stood at the foot of my bed and loudly proclaimed to the orthopedic surgeon covering for my own wayward specialist, that my problems were emotional and that clearly I had had too much pain medication.

I cannot even work up a respectable "mwa... haaaaaaaaaaa... haaaaaaaaaaaaaa - ah - ah" at the memory of Dr. Kelman.

When it became clear to him that I was not an idiot (which took more time than I like to admit), he tried a new claim. Actually, I guess he never did stop thinking that I was an idiot because his claim was this: "What NEW case of CRPS? Why, you've always had CRPS. I should know, I diagnosed it years ago!"

No, sorry, despite years of reflection, review of records, inquiries made and answered --  I cannot explain what he was hoping to accomplish with that announcement!  Many a brow has furrowed in its wake.  I do, however, have a letter saved -- that I do not remember writing, but which I do like, and like very much. In it, I defend the honor of the Physical Therapist doing home visits with me, a talented young woman who hit upon CRPS almost immediately. When I shared her diagnosis with Dr. Kelman, he started yipping at me like an overexcited little lap dog, saying, among other things: "How dare you question my diagnosis, especially because of some stupid PT who doesn't know anything about anything..." That was my last visit to dear, dear Dr. Kelman. He never took me up on my offer to put his claims of "preexisting CRPS" in writing.  It would have been quite the accomplishment to have diagnosed me with CRPS/RSD years before the onset of any symptoms -- a real diagnostic tour de force.

Oddly enough, the person least often in the elevator of my dreams is Dr. Carson, the orthopod who really should be first in line for any oneiric revenge fantasies. The thought of him still terrifies me enough that I cannot even let the elevator doors close before I panic.  Sometimes my wheelchair is caught in the opening-closing-opening-closing doors, and I am trapped.

I was still in the ICU the day he stood by my bed and told me: "I do not have to fix your leg... really it is an elective surgery, you know, I don't have to do a thing about it." {Large, ingratiating, insouciant smile}

I asked him what would happen to my broken, oddly-angled foot and ankle without surgery;  He laughed. He said, "It would stay like it is now, a perfectly acceptable outcome." {Large, ingratiating, insouciant smile}  That would mean hanging weirdly on the end of my swollen, red leg, unusable?

At the evident horror on my face, and in sagacious fear of a taperecorder: "I will fix it, but I want you to know I don't have to..." More laughter.

Shiver. More shivers.

Oh, I bet you want to know what goes on in my elevator! Well, each man says something like, "Ahem. Hello, Ms. Retired Educator. How have you been doing?" Their voices are not normal. They are castrati: mezzo-soprano, contralto. Kelman, as much a true soprano as Michael Maniaci.

I cannot answer their polite queries, of course.

I have no voice.

The doors close, we go up precisely two floors, and the doors open. I rush my wheelchair through the opening, zig-zagging in my nervousness. This is not my floor but I have to get out of there...

Yes, well.

Not even my dreams are subtle.

As I said, the news in the world of pain management today comes in the form of these recommendations about "wait time" from the IASP:

Most urgent (1 week): acute painful severe condition with risk of deterioration or chronicity (new CRPS) or pain related to cancer or terminal or end stage illness (acute herpes zoster also requires urgent treatment but ideally should be treated at the primary care level rather than requiring a pain specialist service).


• Urgent or semi-urgent (1 month): severe undiagnosed or progressive pain and risk of increasing functional impairment generally 6 months duration or less (back pain not resolving, neuropathic pain, post surgical or post traumatic pain)


•Routine or regular (4 months): persistent long-term pain without significant progression

Wednesday, October 12, 2011

My Three in the Morning

Individual Spanish Tortillas for Fred and the Militant Existential Lesbian Feminists
(with whom he dines each Wednesday evening). Total Count? Twenty-five.
This week's culinary offering from the Doyenne of the Manor features collard greens,
mushrooms, red peppers, celery, and eggplant in a standard spicy potato and onion Tortilla Base, with
Notes of Basil, White Pepper, and Oregano as the Uppity-Sounding Flavor Profile.


So what were *YOU* doing in the wee hours, hmmm?

In the Spanish Omelet afterglow, I allowed myself the pleasure of several chapters from The Jean-Paul Sartre Cookbook*:


October 3  Spoke with Camus today about my cookbook. Though he has never actually eaten, he gave me much encouragement. I rushed home immediately to begin work. How excited I am! I have begun my formula for a Denver omelet.

October 4  Still working on the omelet. There have been stumbling blocks. I keep creating omelets one after another, like soldiers marching into the sea, but each one seems empty, hollow, like stone. I want to create an omelet that expresses the meaninglessness of existence, and instead they taste like cheese. I look at them on the plate, but they do not look back. Tried eating them with the lights off. It did not help. Malraux suggested paprika.
October 6  I have realized that the traditional omelet form (eggs and cheese) is bourgeois. Today I tried making one out of a cigarette, some coffee, and four tiny stones. I fed it to Malraux, who puked. I am encouraged, but my journey is still long.
October 7  Today I agian modified my omelet recipe. While my previous attempts had expressed my own bitterness, they communicated only illness to the eater. In an attempt to reach the bourgeoisie, I taped two fried eggs over my eyes and walked the streets of Paris for an hour. I ran into Camus at the Select. He called me a "pathetic dork" and told me to "go home and wash my face." Angered, I poured a bowl of bouillabaisse into his lap. He became enraged, and, seizing a straw wrapped in paper, tore off one end of the wrapper and blew through the straw. propelleing the wrapper into my eye. "Ow! You dick!" I cried. I leaped up, cursing and holding my eye, and fled.
*Sartre's Cookbook Courtesy of the fertile mind of Paul Vincent Spade, Professor of Philosophy (Emeritus) at Indiana UniversityBloomington (spade@indiana.edu)




Previous meditations on the Militant Existential Lesbian Feminist Wednesday Night Feasting Phenomenon:
Wednesday Night Suppers;
Writer's Block and Its Detritus
Coconut Milk Confessions
and the incomparable Vent: Saving the Day.





Monday, October 10, 2011

belle::position::amour -- the third incarnation



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At our Family Meeting last evening, held in the Haddock Clan's rendition of the Knoppenburg Manor* Stables, we voted to repost belle::position::amour for a third year, despite a barrage of online petitions from Change.org calling for its removal.

Although we've signed a fair number of Change.org petitions, usually with their authors breathing down our collective back, a quick Family Canvas showed that, au fond, we do not believe that "empower[ing] anyone, anywhere to start and win campaigns for social change" is altogether desirable.   Oh, put your tongue back in your mouth.

Mostly, though, the Family reasoned that keeping belle::position::amour might be the only way to remain statistically relevant in the blogosphere, since we continue to receive a good number of daily visits from searchers in politically and socially repressive countries, searching for the best ways to get it on.

Call it part of our Liberal Bias, call it What You Will, belle::position::amour is the star
 of our Outreach Program for Excellence.  Well, okay, it is second only to XXX Porn -- about which, surprisingly, we've received nary a petition.

* Knoppenburg Manor is, in fact, for sale. Sad that one of its key selling points is that this area of Belgium has "remained free
 from the threat of terrorist attacks." Our stable replica -- or "agricultural outbuilding" -- is a lovely place in which to relax, chat, contemplate -- at least on warm days. Built some time in the 16th century, the Manor Knoppenburg's charm is in its 
simplicity and enduring functionality. Make a bid!

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


At 3:41 pm this afternoon, a visitor from Qatar dropped by. From far away Doha, Ad Dawhah, this person was steered here by their search engine: google.com.qa.

Like so many who have come before, tongues hanging out, my qatari friend was looking for "belle position amour."

We here at elle est belle la seine la seine elle est belle cannot let such a quizzical, and perhaps painful, cry pass unanswered.

Our first thought was the usual one -- throw the Kama Sutra at it. But really, if someone has resorted to googling sexual positions that are "belles" -- something more immediately accessible might be à propos.



And so the final consensus was to recommend the following:

Sex Deck: Playful Positions to Spice Up Your Love Life
by Dr. Dawn Harper

(Cards)
Buy new: $14.95
SALE @ Amazon: $10.17, Eligible for FREE Super Saver Shipping on orders over $25;
You Save: $4.78 (32%)


[We heartily recommend investing in the NEW, for reasons of basic hygiene.]
Want it delivered Tuesday, October 11? Order it in the next 10 hours and 4 minutes, and choose One-Day Shipping at checkout!


To be honest, we are not familiar with Dr. Harper's book but love the idea of sex positions being put on cards -- very handy. Once you get to Amazon.com to check it out, there will be other books of the same ilk advertised on the page. Our feelings won't be in the least hurt should you choose another guidebook.

However, in the interest of quality control, it would be helpful to this website's management
if you would return to the comment section for this blog post to share
what position did, indeed, turn out to be very, very belle.


[cue music... dim lights...]




Sincerely,

La Bonne et Belle Bianca Castafiore

The Retired Educator

Fred

Sam-I-Am

Marmy

The Dobster

Uncle Kitty Big Balls

(the original signatories)




photo credit 1 -- that's **spooning**, people, **spooning**!
photo credit 2

Sunday, October 9, 2011

A Few of My Favorite Things

Nothing happening between these ears, so I set myself the task of wandering our private quarters this morning and snapping a record of "favorite things."

I forgot to turn on the camera half the time, something in the order of "Ooh, shiny!" -- mouth agape.  And so you missed my collection of stones and crystals stored in my grandmother's cut glass bowl.

My earrings from Tehran.  They're red, gold, and beautiful.

The world's most incredible twig basket ($1.05 at the Thrift Store).

The soup tureen (with mismatched lid) I inherited from my (multi-millionaire) aunt.

One of Fred's guitars, in the process of being lovingly refinished.

The double chocolate prune cake I whipped up at 4 AM.  Don't let the "prune" fool you, it ain't in no way health food.

My closet full of slings, casts, braces, walkers, spare wheelchair parts, and -- inexplicably -- seventeen empty coffee cans.

Ah, but I did manage to get pictures of some things quite dear to the old coeur!


One to Count Cadence by James Crumley.  It's been a long, slow read about a part of the world and a time that was all too quick, all too real, and much too... moist.  (That's for those of you who have passed a monsoon season in the P.I.)  It's pretty rare for this Sister-Unit to wonder whether the Brother-Units have read something.  Anyway, it's the first favorite thing by virtue of being the first "currently in favor" thing captured with the video camera ON.  Oh, and that long metal thingy is -- verily! -- a most appreciated item: one of my five reacher-grabber thingies.  Gimp gold!

Yeah, then there's Buddy the Kitten, some guy whose sweet goodness outshines the sun [It's Fred!], and my humongous bottle of bear repellent.  Special dispensation from Captain Haddock and Tante Louise permits me to attach the UDAP Bear 911 canister to my wheelchair so that I may render impotent any intruder into the peace of Marlinspike Hall.  In reality, of course, I keep it in a cluttered carry-all stashed under my jewelry tree.

Shoot.  The jewelry tree!  That *is* one of my favorite things.  Drat. Oh, well, next go round.  I wonder how many times Scorsese has felt the sting of remorse over a lost shot?

My Pléiades cigar box!  You can pick one up at eBay for under ten bucks, but the love of the thing here depicted comes from the guy who gave it -- one of the world's most invested poseurs -- for whom I was a mannerism he briefly affected.  He thought I'd like it, and I did.  {shiver :: ick :: ewww}

Beyond that, the water-stained warped box is cherished as an adequate container for the things contained -- a tough category that includes granules of fine (Parisian) pastels in its corners, and, in its most recently incarnated use, an absorbent receptacle for the blood stains from glucose testing.

Unintended, but correct, is the inclusion of my flowery cane.  It's a great way for people who are uncomfortable around disability to disassociate.  With that cane as a prop, such folk can exclaim, "If you have to have a cane, why not get a pretty one, right?"  If things are particularly squirrel-y, this $12 cane can sustain a monologue until the ambulance arrives.


My Tracy Porter tea cup and saucer.  It's not a favorite thing... It's more a sometimes perfect note, when perfect means facile.  I was aiming at the stuff in it!  Fred went through a Winnie the Pooh figurine stage a decade or so back, and would bring home gift ensembles featuring the bear or maybe -- my favorite -- Eeyore.  It was reminiscent of Barbie stylings, somehow -- Teacher Barbie or Barbie Collector Twilight Saga Bella Doll.


[We used to enjoy making Alternative Crèches, and Winnie the Pooh + Friends were terrific in the Underwater Nativity before we moved our considerable talents on to Stonehenge Parodies [shout out to @HengeClub ].


Nestled under the cup is an Iranian prayer rosary, or tasbih, given to me by a woman who uses them as worry beads.  I use them as bracelets.  I hope she's grown less worried with age;  I might profit from her serenity with more wrist adornments.  


Then there's a brief interlude with My Boys:  Grandfather, TW and his charming grin, Adrean, Grader Boob as a Young Man, Some Dood with a Goo-Goo Eyed Woman Draped on his Shoulder, and then a seamless and meaningful segue into a shot of My Favorite Hair Bands.


Wow, I should be issuing a blanket apology.  Whatever.  I like textiles!


Mon bel oranger by José Mauro de Vasconcelos only made the director's cut because I ran across it by accident a few days back.  The felines dislodged it from a bookcase and my hand crossed it like a live wire while restoring order.  I decided to read it aloud and have been enjoying that.  Very much, in fact.


Disturbing trend:  the Iranian Worry-Bead Woman?  She also introduced me to Mon bel oranger.  A few years later, I had a wonderfully blue neon light constructed to form Zézé, the personnage principal that she somehow brings to mind.


So it's My Sweet Orange Tree in English... but very few USAmericans know of it.  Have you read it?  It's a children's classic that adults have come to mostly via translation.  Of course, according to Amazon, you need to shell out $250 for an English copy, which might explain a few things.  It needs to be back in print!  It's one of those books to cherish, to force into a loved one's hands.  Good going, felines.  I wonder what they've in store for me next.  Probably Tolkien.


Clearly losing my hold on reality, this videographer next centers her food processor in the frame, delightfully accented by some juicy red bells, followed by a candid shot of favorite flavors:  ginger, cayenne, rosemary, cumin, balsamic vinegar.  Wasabi?  What the heck is wasabi doing in this shot?  Am I queen of sushi?  No, I am not.  In sauces, dressings, toppings, fine -- but do I gravitate to wasabi, first off, first thing, as first choice in a flavor profile?  No, I do not.  Harrumph. 


Knives.  Okay, so we have a few knives.  I confess that the paring knife collection is over the top, and I cannot see why we have more than two boning knives, but heck, we just do.  


Should you ever hear that I've met my demise in some sort of violent domestic conflict?  Check the kitchen, count the knives.  Look between my shoulder blades.  Is that a Chinese cleaver parting my tresses?  [Psst!  I would check into Sven Feingold's whereabouts and his alibi.  I hate to insinuate, but if La Bonne et Belle Bianca Castafiore serves as his witness, or even Cabana Boy (recently found to be Sven's biological son)?  Someone may well be getting away with murder...]


Finally... my favorite triptych, our Laughing Buddha, plus a beloved detail of that old cliched Klimt and his golden kisses.  The cat condo keeps getting shoved in front of it, and so it's fitting that Buddy the Kitten should languidly drape himself into the last shot.


Pray for sleep, because in the queue of things-that-might-pass-as-interesting should my brain not rest a bit are such pressing topics as:  


The Linen Closets:  A Retrospective
Fred's Flashlights; and...
Dobby's Secret Stash of Tiny Top Hats.








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