Friday, November 11, 2011

Cortef, Kettle Corn, and Benjamin Raspail

yellow ochre pigment
You've no idea how it saddens me to keep coming "here" without the mood or the energy to convey the real fun and everyday wonder-wacky of life in Marlinspike Hall, deep, deep in the Tête de Hergé (très décédé, d'ailleurs).

I hope not to have lost too many of you with that sorry instance of wonder-wacky.  I delete, delete, and delete but it keeps coming back.  The lesson?  Don't even start with the wonder-wacky.  Wonder-wacky,  it's a monkey on the back.

We've launched a Graduated Memo Series to the New Haddock Corporate Division, infinitely approaching an opinion -- such that the Captain may think himself Author to the Gentle Thought:  Fun and wacky, who doesn't love fun and wacky but we also aspire to centered and pertinent.  [Damn it!]

That Damn it! is a refrain, nothing more, something we say just to ourselves.  You know, bracketed.

I cannot explain exactly what happened to me during the night but my last recollected thought before unconsciousness was to wonder if I might be dying.  Violent spasms -- body-wide! -- complemented by cold shivers and perverted neurological perceptions, light-twirling batons skimming the skin of my eyes. It was the severe, very localized pain that made me wager against impending death, an estimate made even stronger by the evidence of waking up.

Nothing, nothing, nothing is as it seems.
That's what I'm hoping, anyway.

I feel skeletal, in that I see bones -- backlit -- when I close my eyes, and feel them, stretched, broken, rotting.  Also tenacious, in clay's yellow ochre, not oatmeal, stone or pebble, not ecru. The pigment of my better bones is duplicitous, good for reds and browns as well as yellows, but also tendentious, tending toward a glaze despite the world's opaque demands.

We decided it was not worth another trip to the MDVIP Go-To-Guy's office to get the material leaking from the fistula cultured.   The gazillionth follow-up visit for that shoulder is coming up next Thursday, anyway, and ShoulderMan can either send me down the street to my old Infectious Disease Dood or across it to the hospital to have it done.  I've also decided to beg for, rather than defer to, a surgical option, and for its rapid execution.

I used the word untenable four times today in communications.

Yesterday, though, I spent over 10 hours researching tablecloths for the screened-in porch that Fred and I, together, recuperated.  I hate damask but even fine linens and knobby cottons repulsed;  The only suitable fabric came from a shop in the UK which promised to make "to order" my tablecloth needs, requiring only three weeks for the effort, and some money. It wasn't a fugue state, it was an osteomyelitis state, a necrotic state, and my skull dripped a desalinated sea.

A few moments ago, I raced to one of our twelve Personal Linen Closets and without any effort whatsoever placed my extended grabber-thingy on a perfectly-sized antique Army Navy tablecloth that really belonged to one of my antiqued relatives, a woman named Mabel.  I know this because someone wrote her name in permanent marker in one of the corners.  We've never used it.  It's lain, folded carefully, protected by acid-free paper, breathable muslin, and air-conditioning from light, temperature extremes, humidity, H1N1, cat dander, moths, and stray Crayolas.  A fine heavy weight, it should do well out by the moat, next to the mooring site for miniature subs, there where it is cold and dry, wet and hot, in a world of swirling particulate matter and coffee mugs.  Thank you, Mabel!

I'm eating kosher dill after kosher dill, hoping to sweat pickle juice by morning.  I salted the already-salted microwave popcorn.  I'm salt crazed.  My new mantra, picked up from a recent recipe involving complicated layers of flavors, is "cook with kosher salt, finish with sea salt."  My salt obsession just unmasked itself as part and parcel of adrenal insufficiency, and I popped an extra Cortef.

This is untenable, this craziness.  During a very brief sleep, I dreamt of Benjamin Raspail.  The Benjamin Raspail of Silence of the Lambs, not that uniquely French creation, the painter-politician of the 19th century.  I would have sworn that my waking self had no knowledge of either, but my malicious sleeping self cried Murder and Cannibalism (and Suicide, the aggregate!).

I'm all set to give this sleeping business another go, though.  Soft jammies and the last fifty pages of Lehane's The Given Day.  I've no right to judge it successful, but I do think his black voice succeeds.  I can't think of another writer who liberally scatters nigger through the pages without that act, itself, becoming the focal point or requiring some sort of textual defense. It's not brilliant but it is, as one reviewer said, "a big American novel."

I want to lose myself in "big," so if the room begins to swirl, the toes point in spasm, and the pain cuts and cuts, I can lose myself in saga and generations instead of wondering if Fred will be able to keep a clean and orderly Manor when I die, and eat his vegetables.

My favorite line thus far:

"Dee-fine avar-iss" she said once.

It's all wonder-wacky.

Nothing to see here.  Move along.

"Move along," I said.

Monday, November 7, 2011

Grosses Bises/Re-posting as an Object Lesson

Wow.  It's amazing how some things do not change.

I was browsing old entries, looking for something that dated from the summer of 2008.  I have never been a good tagger or key-worder of posts, and many from that time period were left essentially undescribed.  The one that I am republishing now, for instance, bears this label:  "a partridge in a pear tree." Cute, maybe.  Helpful?  Not in the least.

Reading it should have made me laugh, but given how it highlights that inefficiency has been alive and well chez MDVIP Go-To-Guy's office for quite some time, I am not even cracking a small smile.  It's even less amusing since it marks the actual beginning of the Shoulder Infection Saga.  At this point in the ridiculous tale, I had two prosthetic shoulders that had both begun to hurt, accompanied by infamous malaise and fevers.

I may have to give this conspiracy angle more thought, because it looks more and more like things were screwy from the very get-go.

This post is in the form of an email to a then dear friend, who is, remarkably, still a dear friend.  Like everyone at a physical remove, she echos frequent consternation and disbelief at my tales of labs gone missing, labs ruined, doctors out of the country, and health professionals behaving as boors.  I'm sure she thinks this is all an elaborate invention...  Especially after she gets today's email explaining why the wildly anticipated culture results from last week's sampling will not come to anything resembling fruition.

So it is [*poof*] July of 2008 and apparently, I've begun to make serious noise about the state of my shoulders.  After a frustrating few days, I vent to my friend, thusly:

Hullo --

Don't worry, it's not you -- I need some slow-speaking here on my end, too. The quality of the deliberate. Or... I need an analyst's couch.

I can't remember what I wrote to you! The blood work showed an elevated white blood cell count, a very high platelet count, high liver function tests/enzymes -- That's all she told me -- And I didn't want to hear any more. It is, I believe, all very vague. My white counts are usually very stable and hover at the 11,000 mark -- mostly because of my "normal" inflammatory state. (Touche pas à ma phrase...) When I saw him last, I had already started having the fevers and general misery (quelle malaise, cette falaise...) and that white blood cell count was elevated, too, but only to 13,000, I think. It's now 17,000 sumpin' sumpin'.

I need to vent -- which will hardly interfere with the innate logic of my presentation. You know this from innumerable past attempts to plumb the depths of the chaos of my language. My languages.
Where is La Belle Bianca? you ask, voice a-quiver. She is firmly ELSEWHERE today. En vacances, disons. Resting her voice.

So -- Today being Wednesday, we naturally begin from the début of the work week: Monday.(Please recall that Monday marks six days from the blood draw, and six days from the steep clamber up Prednisone Mountain.) I call dear Dr. Go-to-Guy's office and leave a message at about 2 pm. I am feeling like warmed over, tepid crap.

No, of course that is not the essence of my message! What do you take me for, and for whom, too? Also! The message was that I remained febrile, that the stress-dose of steroids had helped with much of the bone and joint pain, but that there was an intensifying, well-localized pain in my right shoulder -- which, by the way, was basically unusable. I did not share la malaise de ma falaise, because who wants to encourage these medical types, these diagnostiqeurs, in their disgust of people with generalized pain and an excess of adjectives? Dear Dr. Go-to-Guy is not your average bear, of course, but I still don't wish to open myself to ridicule, now that the medico blogging world has dared to air its fatigue and discontent. (There has been an adroit movement to shift the blame for the cynicism squarely onto the shoulders of the barrister. Ooooo, smooth-and-wholly-unanticipated!)

There is no call back.

Monday night becomes emotionally bad as well as physically bad because I am just so tired of hanging on. The violins begin to play. Yes, the world's smallest! Bianca warbles in an effort to cheer me up; Dobby plays leapfrog on the very shoulder in question; Marmy offers an exquisite hair ball; Sammy makes goo-goo eyes; and Fred? Well, Fred goes shopping. He is very kind and I try not to overwhelm him with ridiculousness. Good man, that Fred. Well, except for his recent executive decision to use chicken feed as cat litter. Very absorbent, but the house smells like a barn.

Yesterday, Tuesday, I called as soon as they opened, ticked off by then, thinking that my message might have purposely been derailed, thanks to all the bad blood going on between the doctors, nurses, and staff that are leaving to form the new practice, and the ones that are staying behind. Worked myself into a lather, lots of suds! While not normally a conspiracy theorist, I will run with one when tired and dehydrated.

When Darling Nurse does finally call, she does so in order to tell me that she got Monday's message and that she was (profusely) sorry. She lost my chart Monday, and can't do a thing without it and blah blah blah and could she call me back because she needed to consult with dear Dr. Go-to-Guy about a few things? In the inimitable language of Marmy: Ack! Ack! At least, all things are back to normal, and Lee Harvey Oswald did, indeed, act alone.

Darling Nurse's second call: She is kind of scaring me, although I suspect it is more an effort to impress me with references to quick, decisive action -- all brought about by her dedication to my health, and by, of course, the recovery of my chart. Doc is on the phone right now with your orthopedic surgeon (henceforth to be known as ShoulderMan) and he wants an x-ray stat, and probably a bone scan, and so on and so on. Inside, I am a tad bit pissed by all the stat-ness, after having been so desperate for help.
Also, I know that a bone scan would be a massive waste of time, money, and resources.

Third call: We figured out where I could go for the x-ray (to a hospital about 40 minutes from us, but we also would be in bad traffic, very bad traffic) and then she said I needed to call her right before I left the house because she would have "additional instructions" from dear Dr. Go-to-Guy.

Time came for us to leave, at least I think so -- Le Fred is dragging his feet, suddenly has to make a trip to Walmart, suddenly there is an online auction he simply must witness, but overall? He is being a total studmuffin! What no one takes into consideration is that *his* day is being ruined because he has to chauffeur me everywhere. Like I said, a studmuffin.

Anyway, per instructions, I called the office and asked for my good nurse.

-- "Your nurse is on another line, would you like to leave a voice mail?"
-- "No, she told me to speak directly to her."
-- [major put-upon sigh] "Well, i will have to put you on hold."
-- "Okie-dokie!"
-- Repeat performance, the only difference? "Your nurse has taken a patient into a room and won't be available for a while."
-- [major put-upon sigh from MY end!]
-- "Okie-dokie, there, then! We will call her from the hospital's outpatient radiology department. We're leaving. please let her know we are on our way. Thanks!"

I was very proud of my telephone skills, as I am usually nearly phobic. I don't like telephones. Part of the supreme irony of all this? The hospital we were going to is -- literally -- a straight shot across the street from Go-toGuy's office. Why couldn't this all have been: swing by the office on the way to radiology and make sure you have everything you might need?

Shut up, you! Yes, I realize that such a common sensical move was also mine to simply make. One somehow gets caught up in a frenzy of following orders. And yes, of course, if we would just join the rest of the human race and snag some cell phones, some of this ridiculousness might be alleviated.

Anyway, we get there -- We're an hour late but still in the windowof opportunity she outlined for me. I smile a toothy smile at the receptionist because I remember and like her. I give her my full and complete name, get out my picture ID and insurance card, and while she is frowning at her computer monitor and leafing through piles of paper, I make smart chit-chat with The Fredster. (I keep wanting to call him "studmuffin" now, but if he found out, he would be pissed, like he was about the whole "Cabana Boy" snafu! Now *that* was a fine misunderstanding, I must say!)

You're probably ahead of the curve of this story: Right! NO ORDERS. NO PAPERWORK. No outstretched hands to take my proffered proofs of coverage and identity.

Unbelievably, I have a conversation with dear Dr. Go-to-Guy's office staff that is eerily reminiscent of the last one before we left the house, in that 'My nurse isn't available, would I like to... '

"No," I erupted. "I would not like to... What I *need* are some x-ray orders..."

The nice X-ray lady gives me the fax number and I relay it. Then Go-to-Guy's office lady says, "And what is the number if we just want to talk to them some more?"

This is a huge, major hospital that is right across the street from where her little pin head sits. Of course they have the phone numbers.

Still, in the interests of world peace, I ask the nice X-ray lady, who promptly furrows her considerable brow and shakes her head "No. No. No." They just need a number, I beg... and RELUCTANTLY, she gives me a number for their back office. What is the issue about giving out a sacré phone number? Incredible...

In about 10 minutes -- a STAT order is faxed over for a plain x-ray series of the shoulder. Surely this is abuse of the word? All the other stuff, the bone scan and whatever, is not ordered. Fine by me, I have a headache and i think (no, I *know*) we are all bozos on this bus...

So we finish. Hooray! The x-ray tech says, when sufficiently wheedled, that she thinks everything looked fine, but that my doctor will call me at home -- that night, last night, Tuesday night -- as in "shortly."

We crawl home through rush-hour NPR traffic, I feed everyone, am all wound up, very feverish, etcetera, ad museum, et ainsi de suite, and so on and so on, amen. I keep the dread phone at hand.

No phone call. I seem to recollect some involuntary weeping mixed with inchoate laughter.

No sleep -- well, some -- but I don't know how much, because I wake up with the computer on my lap and no memory of what I was doing. I have started a ridiculous little blog and it just gets weirder by the day because of insomnia and pain, plus my undeniable native weirdness -- and I see that I have made an entry into said blog -- again with no memory of it. What the heck, eh? An entry is an entry -- except that I like blogging and want a good calibre of thought and writing -- that is definitely NOT happening now.

We arrive at today, enfin. I get an early morning phone call! Hooray! It is, forgive me, from ShoulderMan's nurse, whom Fred and I call, forgive us, SuperDyke. She is extraordinarily gay, even in this city of the très gay, extremely masculine, and she acts like a drill sergeant. We have been mildly frightened of her in the past, though she is also very, very organized and straightforward, two key characteristics that have been woefully absent this past week.

SuperDyke tells me, first, that they are angry with me because back in 2005, I failed to turn up for my post-op visit with ShoulderMan. I congratulate her on her elephant-like memory and explain that I had multiple problems post-op and that her office told me that none of them were their concern, and that subsequently, I caught pneumonia, was on a ventilator in ICU, and then had to deal with fractures to my sternum from where they did CPR, etc. Screw world peace.

She sniffed.

Then, she shifts into high gear and lays out the arrangements for me to have an aspiration (guided by fluoroscope?) from the shoulder this Friday afternoon -- at yet another hospital, this one totally unaffiliated with my dear Dr. Go-to-Guy. They will culture it and see if it grows any bacteria. That will take time, apparently, and so I won't be scheduled to see ShoulderMan until next Wednesday. Yes, Wednesday, when I am simultaneously scheduled with Magic Eye Doctor to see if my pressures are responding to the glaucoma treatment... Well, cancel that! Magic Eye Doctor already thinks I am avoiding him. (Maybe I will drop off a copy of the Warren Commission Report.)

So now it is "pre-cert" time and la-di-da dealing with BCBS time... and, I figure, dear Dr.
Go-to-Guy will finally call me this afternoon. Yeah! That's the ticket! That's what will happen!

RING RING. It is Go-to-Guy's good nurse, who advises me that she is not normally this bad, it is just that she is kicking her Diet Coke habit. Uh-huh, I say. What happened yesterday with the orders and all, I dare to ask. Oh... I sent them to the wrong hospital...

She is calling to tell me that:

DR. GO-TO-GUY IS OUT OF TOWN UNTIL JULY 24, that I need to "be strong and go on auto-pilot, alternate percocets with ibuprofen around the clock..." oh -- and that SHE JUST GOT IN A TELEPHONE FIGHT WITH DR. SHOULDERMAN, himself.

Well, I know that ShoulderMan and his staff will do the right thing, and shrug it off.

Because I know that they won't take it out on me, the patient!

So that's the whole sad story, in ridiculous detail, my dear Ms. D, and clear as mud, too!

I am munching on sweet, crunchy, bad-for-me cereal, sipping strong cold coffee, burning up with fever and pain, trying to find the high road, so that I can get on it!

Hanging by the proverbial thread,
All my love,

[it was a tough call, though... which post to repost. "Calling Dr. Hackenbush" was just nosed-out at the finish line...]

Headless, and yet weeping

seeing red by halo
These are the available choices:    

Either my head is going to explode or I am going to cry.

I am thinking that both will happen, as I've no control over one and the other will probably help me feel better.  If a burst head has any propensity for spawning hot fires -- you know, maybe in the corners of the room, where a stray bit of flaming cranium might land on our ancient brittle-dry silk tapestries -- then it could be that the wetness of my flailing tears might extinguish that dangerous spark.

Hmm?  Oh, well.  The doctor's office just called.  You know, the doctor and his team that I jovially designate as my MDVIP Go-To-Guy et al?  Remember the culture we arranged last Thursday from the fistula that developed near my left shoulder surgery sites, the same left shoulder now "suspected" of being reinfected, such that removal of the shoulder prosthesis looks probable before year's end?

The source of the constant pounding in my head, my daily fevers, the stabbing pain, once confined to deep within the ersatz joint, now traveling down the shaft of the humerus?

Yes, the fistula that delivered unto the nurse's culture swab a respectful quantity of yellowish pus... that in the days since has assumed the quality, in my mind, of thick molten gold, source of epidemiological enlightenment and an informed antibiotic choice.  I even thought, somewhat dramatically, that this opportunity might save my life.

I expected to hear a lot of things but not this as a conversational opening:

"It's all my fault."

The lab refused to run the cultures.  She sent the two swabs in for analysis using expired tubes.  She said she begged them to run it, but that they responded with some lame excuse.

Oh, what was it?  Oh, yeah:  "We could lose our accreditation as a lab..."

Fred informed me that the next time I called him "paranoid," he would remind me of today.

I think I was supposed to feel sympathy for the nurse.  Excuse me if I fail that expectation.  I would entertain the idea of seeing red were not the pressure inside my skull mounting at an alarming rate.

Is there some plot afoot in the universe that wants this infection to rage on, unabated?  That wants me to be left infected, headless -- and yet weeping?

I bet we don't even have any ice cream.

crps, in living color

I hate to contradict the evidence, but the visible CRPS-afflicted parts of my body are undergoing the usual seasonal shift from red CRPS to blue CRPS.  Though you are not likely to notice, this stuff not being the center of your umbilical vantage point, this also entails a move from a highly edematous state to one that is... well, less so.  Shoot, on very cold days, my hands and feet will be nothing short of shriveled.  My rings will fall off my fingers, that sort of change.

Speaking of rings, a nurse asked recently why I wore rings and a bracelet, given the pain and ultra-sensitivity in my hands and lower arms.  I don't always -- a few times per day, I will divest myself of all jewelry and hold my freed hands up into the air, provided the air is cool and calm.

I suppose I persist in wearing some jewelry for the same reasons that I continue to do dishes, use knives, and pet animals:  these are useful ways to claim occupational/physical therapy credits.  In fact, there is a standing order in our kitchen that I am to wash all of the dirty dishes, unless I specifically beg off.  [Begging off being on my mind due to the change in temperatures.  There is nothing quite so unpleasant, first thing in the morning, as the freezing, greasy water found in a sink full of dishes left "to soak" overnight.]

Early on in my experiences with physical therapy (the treatment modality with the most success in modifying CRPS, at least if begun in a timely fashion), I was introduced to the concept of stress loading, which incorporates the activities of scrubbing and carrying.  Beyond that, there were horrific attempts at desensitization, failures all.  It soon became something of a joke to me that we were paying actual money so that someone could supervise me while I scrubbed, and give hilariously imperious nods of approval over my carrying techniques.

Besides, with all of Marlinspike Hall standing at the ready, actual scrubbing and real carrying tasks were bountiful.

In other words, it isn't at all difficult to make daily tasks sufficiently mindful that they assume the place of physical and occupational therapy.  With every setback, strengthening, dexterity, and coordination work moved to the forefront.

Being a fairly simple-minded person, I succeed in tricking myself pretty easily.  For instance, Dobby the Runt and Buddy the Freakishly Large Kitten both thoroughly enjoy opening my closet door and climbing the shelves so as to shed on my clean clothes.  To keep them out, we could add a simple latch to the door... or I could artfully pile various hand weights at the bottom, on which humans and pets, alike, could trip, causing an ongoing collection of paint chips and ill will.  It's good for my arms to do the bending and lifting now required just to put away clean underwear.

Anyway... yes, rings, watches, bracelets all serve a therapeutic purpose, most days.  They're my secret desensitizers.  The warm sudsy water in the kitchen sink is my aquatic therapy.  General cleaning encompasses a well-thought out stress-loading program, in which scrubbing and carrying are accomplished by... scrubbing and carrying.

This morning's video update just seemed to cry out for some contrasting color, so I grabbed things at hand:  one of Hiroshige's sudden showers; a favorite glass vase (favored for its blue); rope; and a needle point placemat that Brother-Unit TW included as filler in one of his marvelous gift boxes (ergo, I mistakenly imbued the placemat with magic powers).  Like I said, though quite purplish/red right now, the extremities have begun the annual pilgrimage to the blue, cold, shriveled side of things.

For such is CRPS.

Sunday, November 6, 2011

the first mole (poblano)

it's been a weekend of high fevers, pain, and cooking.  looking at the sunday looming large before me, i foresee much of the same, with the exciting addition of some mopping and bathroom scrubbing.

i made my first mole sauce yesterday, an undertaking that probably has fever as a prerequisite.  a mole poblano, to be precise.  it never would have happened had not fred made several trips to the store, and had i not weaseled one or two more ingredients out of each journey.  a stickler for accuracy, he was going back to straighten out some check-out discrepancies.  anyway, it was my lucky break.

the thing is, i don't know if my mole sauce turned out as it ought to have -- not having ever tasted a mole sauce, myself -- though i suspect i've had it in such things as chicken enchiladas.

ah, but no matter, for i've surely entered the pantheon of cooking deities, never having heard of anyone else  using their first ever mole poblano as the base for a beef stew!  

that's right, about a cup of the mole sauce, along with a half-cup of brewed coffee, and some hits of nice cold fresh water.  the stew was finished with a splash of balsamic vinegar.  

this was maybe the third or fourth time i've ever used the slow cooker thingy and it proved ideal, that slow-and-low style.  

i was afraid it would turn out too sweet but instead the result was complex, smooth, and fruity, with a really cool viscosity, a bodacious body -- the criticism would be that it was too strong and almost overpowered the many tasty vegetables in the dish.  it was, though, a perfect pairing for the tender cubes of beef.  

of course, cooking beef is not something i am used to, either, since i've been a vegetarian most of my life.  when i began to eat meat, beef and pork were, and are, difficult to accomodate without major nose-wrinkling.  i cannot touch raw beef or pork -- i use utensils as i work with them.  it's a near phobia.  

so... to my untrained beef palate, it tasted rich, very detailed, peppery, spicy, smooth, with a final salvo of chocolate.

a whole lot of work for something that disappeared so quickly!

my hands went numb pretty early on in all the roasting, mincing, chopping, measuring, reconstituting, and mixing -- but after clearing the immediate area of cats, divas, and sleepy partners, i just forged ahead, approximating grips that seemed fierce and unbreakable.  i only dropped knives twice, and didn't cut myself even once.  ha!

fred behaved wonderfully well -- so very red-blooded, so very archetypal.  he settled in the bed, managing his resource of pouffy pillows with aplomb.  he scarfed down two big bowls of stew, grunting things that sounded approving, and watched ufc 138 (yawn).  as he was drifting off to his happy sleepy place, he had the nerve to inquire whether i had made an apple pie...

it's difficult to say, but i think he snickered right before falling into the dream arms of one of the octagon girls -- arianny, if his goofy mutterings are to be believed.  (the only thing i've ever admired about the octagon women?  they wear sneakers.)

anyway... one day?  i'd love to tackle rick bayless' oaxacan black mole -- check out how thick it looks, how smooth, how shiny, how beautiful!

is there an apple pie in fred's somnolent future?  
okay, yes.  yes, i am gonna bake the man a pie.  

you wanna make something of it?  huh, do ya? 

(seriously, would you like to be in charge of pastry?  i don't think i can manage much dough-rolling today.  it's either go "rustic" or go "frozen pie shell.")  

most likely, it's jacques pépin to the rescue.   so stop back by late this afternoon and have a piece with us.  we can watch the sun set over the moat...