Saturday, October 25, 2014

we have escaped the grand intent

it's obscenely beautiful here today.

please pause and put out peaceful, loving vibes on behalf of my brother, known in these pages, variously, as grader boob, lumpy, and the cantankerous english professor.  sometimes he's grouped with his elder sibling as a "brother-unit," a term never meant to diminish the role but to leave it wide open for fresh meanings.

i don't think he is dying today, or even tomorrow, but i have felt the push and pull of things change this week, felt the unmistakable beginnings of descent.

then there's what he's allowed himself to allow -- falls, brain scans, a fatigue beyond imagining.

mostly, though, there's the fact that he set me a task.  busy work that he knew would thrill me. burn him a couple more CDs, as the first one was such a hit that they listened to it on the drives to the cancer institute, singing along.

the truth will out, though, and it became clear that it is his friend, the driver of the mini cooper into which he folds his very tall frame for the torturous trips, who is really grooving to my musical production.

but i'm easy and also scared, so i will spend the rest of the day rabidly doing my teacher's bidding. he was schooled in good music by the best, and he gifted me with what he knew, and i have tried to retain those lessons, enriched with the accretions of my life.

i don't blame god, or blame anyone, or feel let down by some amiable universal source. there is comfort in our anonymity, in the finite space and energy we occupy, consume, produce.

i hope he lives out the year, having heard him reference christmas plans, but now there is elision in the discourse, and palpable entropy in the hurricane's whorl.

my brother-units are precious to me, but i know my preciosity means nothing, that we mean nothing, and that there is great beauty and comfort in that.

we have escaped the grand intent.

oh, sweet grader boob.
oh, lumpy.









© 2013 L. Ryan

Procustean Science: Re-Gifting IVIG

Part of me doesn't even want to post this, as it is recycled material from the famous or infamous -- I cannot decide, discern -- Andreas Goebel, forever presenting IVIG as a silver bullet for CRPS.  That's okay, I have seen good things come from focused scientists.

But it seems to me, the layperson with a dangerous small bit of knowledge, that repackaging a theory every few years in the pretty wrapping paper of a new context eventually makes the re-gifting exercise less one of diverse generosity and more one of desperately searching for a respectable vehicle.

In his most recent reincarnation of IVIG as cure all, Dr.Goebel blithely tosses on the rubbish heap the notion of trauma/injury/physical insult as an inciting event in CRPS.  There has always been a caveat to that observation -- that many cannot recall an inciting event, that many cases of "spread" (Dear God, please give us a better and more accurate word!) occur without trauma, large or small, and so on.

Still, I'd wager that most of "us"experience onset, instances of "spread," and, according to most reports I've read of people in remission coming out of that remission, after some sort of inciting injury/insult/trauma.  Call me crazy... (I'll give you a few moments.) -- Call me crazy, but trimming a disease profile so it better fits in the box you're wrapping this year... doesn't make me all a-dither about what's under the Christmas tree.

It makes me want to gift you with "Procrustes" as a middle name.  Andreas Procrustes Goebel.

Dr. Goebel presents himself in the following way on various websites that deal with disease and (all) encompassing theories of immunology and auto-immune scenarios

I am a senior lecturer in pain medicine at the University of Liverpool, and an honorary consultant in pain medicine at the Walton Centre NHS Trust, both in Liverpool in the United Kingdom. After receiving my medical and doctoral degrees from the University of Würzburg in Germany, I trained in anaesthesia and pain medicine first in Germany, then at the Oxford School of Anaesthesia in the United Kingdom.  This was followed by further specialized pain training at University College London Hospitals, and interventional training in Notwill, Switzerland.  I completed a 2-year fellowship in post-trauma immunology at Harvard Medical School in Boston. My main professional interest is with the role of the immune system in chronic pain, and immune modulating drug treatments for unexplained chronic pain conditions. I have a particular interest in a condition called ‘Complex Regional Pain Syndrome’ (CRPS).
I am a fellow of the Royal College of Anesthaesthetists, a member of the British and German Pain Societies and the International Association for the Study of Pain, and founding member of the CRPS network UK.

All of my bitchiness about the window dressing aside, Dr. Goebel was kind enough to answer an email inquiring about any IVIG/immunotherapy ("immune modulating drug treatments for UNEXPLAINED chronic pain conditions"/CAPS mine, all mine) research being done in the U.S., as he is centered in the UK:
This is all experimental at the moment. The only US group which I am aware of, who is trying immune treatments relatively systematically, is the Philadelphia group. You might wish to inquire with Dr. Lopez: Enrique.AradillasLopez@DrexelMed.edu and inquire. 
I have not inquired, as my experience with the staff at Drexel University's Neurology Department has been abysmal, and that's adding a dose of "sweetness and light" to the assessment.*

Well, time to rein myself in and give you the latest Dr. Andreas Procrustes Goebel's  Bento Box for a treatment that may well have tremendous merit, despite how it may be overblown in its marketing hype. This is much easier to take than past incarnations, being constrained by the format of a clinical trial.

Low-dose intravenous immunoglobulin treatment for complex regional pain syndrome (LIPS): study protocol for a randomized controlled trial

Longstanding complex regional pain syndrome (CRPS) is refractory to treatment with established analgesic drugs in most cases, and for many patients, alternative pain treatment approaches, such as with neuromodulation devices or rehabilitation methods, also do not work. The development of novel, effective treatment technologies is, therefore, important.

There are preliminary data suggesting that low-dose immunoglobulin treatment may significantly reduce pain from longstanding CRPS. 

Methods: LIPS is a multicentre (United Kingdom), double-blind, randomised parallel group, placebo-controlled trial, designed to evaluate the efficacy, safety, and tolerability of intravenous immunoglobulin (IVIg) 0.5 g/kg plus standard treatment, versus matched placebo plus standard treatment in 108 patients with longstanding complex regional pain syndrome. Participants with moderate or severeCRPS of between 1 and 5 years duration will be randomly allocated to receive IVIg 0.5 g/kg (IntratectTM 50 g/l solution for infusion) or matching placebo administered day 1 and day 22 after randomisation, followed by two optional doses of open-label medication on day 43 after randomisation and on day 64 after randomisation.

The primary outcome is the patients'pain intensity in the IVIG group compared with the placebo group, between 6 and 42 days after randomisation. The primary trial objective is to confirm the efficacy and confidently determine the effect size of the IVIG treatment technology in this group of patients.Trial registration: ISRCTN42179756 (Registered 28 June 13).

Author: Andreas Goebel, Nicholas Shenker, Nick Padfield, Karim Shoukrey, Candida McCabe, Mick Serpell, Mark Sanders, Caroline Murphy, Amaka Ejibe, Holly Milligan, Joanna Kelly, Gareth Ambler



* LIFTED FROM A POST PUBLISHED OCT. 3, 2011:
Remember Dr. Schwartzman of Drexel University fame?  I was so excited at the thought of being Philly bound, and getting to see one of the world's best in the field of CRPS.  It did not work out, mostly because the rarefied air around experts makes them incapable of understanding the limitations of their own impossible schedules!  That's why they have experienced gate-keepers, usually older women with cigarette-ravaged voices and an attitude.  The gate-keepers get to tell all the patients to whom the expert has offered the moon that the moon is made of cheese. 







© 2013 L. Ryan

Saturday, October 18, 2014

Yoga will help, as will Tai Chi, Qigong. And Twister.

Hello, Beloved Readers, and welcome, those of you new to Marlinspike Hall, ancestral manor home of the Haddock clan, and one of the premier architectural creations of [the] Tête de Hergé.  Within the Tête de Hergé, we are located to the west of the famed Lone Alp.  Locally, we're neighbors to labs and farms dedicated to the smaller cutting edges of animal husbandry -- miniaturists, they are -- and to a Cistercian monastery also, we are neighbors, offering secret shelter to its beleaguered abbot and opportunities for Christian fun and pagan insights to successive classes of postulants, novices, and the occasional weary long-professed.  The Crack Whore has taken up residence hereabouts, as well, bringing a much needed diversity to our slightly stuffy country lanes -- she's quite nice and we hope she'll one day join the, er, um, "Haddock Family Enterprises Addiction Center."

Sigh.

I had hoped for an easy Saturday evening entry, bringing you all up to date on the fascinating goings on -- a belated, some might say, series of disciplined protests and legislative appeals by Marlinspike Hall's genetically indentured Domestic Staff, designed to implement parity of wages and benefits among the various genetically pure (not engineered, please understand, but guarded by careful counseling and occasional forced sterilizations) families and houses.  I've tried several times to explain the Haddock forefathers and foremothers intentions in creating the various lineages of servitude, their happy, happy intent, but always I fall short.

Meant to create harmonious groups of highly specialized happy, happy families, guaranteed work, shelter, and provisions of unusual opulance, what could go wrong?  The Domestic Staff family dedicated for several centuries, for example, to the care of Caravaggios, would never stray from advanced studies of varnishes, dwarves, gilt, and twisted royalties -- until young Rodrigo stumbled upon a stray copy of The Order of Things (the world does have its ways), turned gay, and began an avant-garde fashion internship in Rome dedicated to exotic black leathers and turtlenecks.

Genetic anomalies, evolution, the Hand of God, whatever one invokes as Author of Change, occurred in every family meant to remain pristine in its work, its intent, its happy, happy happiness.  There are rumors of the Haddock penchant for miniatures leading astray some of the less scrupulous Haddocks, more attracted to scientific shortcuts  -- or, opines a growly Captain Archibald, some "disgruntled employee, led astray by outsiders, and... Rodrigo." Note that he never questions what nefarious influences converged upon The Manor when, as a young explorer and navigator, he discovered and exploited the Worm Hole Marina in the Moat surrounding Marlinspike Hall!

Ah, well.  Enough of our Labor Troubles.

Back to the Crack Whore.  She's perfectly made for the Haddock Family Enterprises Addiction Center.  The origins of the Center are humble and tied in to our system of genetically indentured Domestic Staffing.  I wrote it this way, once, when times were financially tough and the Captain had been inexplicably missing for longer than was usual:

...we scrape the underpinnings of the more modern furniture, mostly reproductions, in The Manor's public vending areas and grateful that the miniature families on the domestic staff willingly sift the silty bottom of the moat for spare change.  We split the haul, fifty-fifty, because square is square. 
You'd be amazed at the number of people who think that throwing things into the moat is an acceptable romantic substitution for tossing pennies into a well or euros in the Trevi fountain.  Of course, given that we sometimes attract a crowd heavily into the religious life, here more for our next door neighbors, The Cistercians, or equally heavy into heroin, hoping to score an inpatient bed at the posh Haddock Family Enterprises Addiction Center, headquartered in our barn -- we don't always come away rich in cast off coinage.  
I didn't want to confuse you with haphazard detail, but most of those who drop by the Haddock homestead are also somehow related to the carnival, and are, in fact, often carnies.  Fred thinks its because we exude some sort of Rabelaisian exuberance, that we are, in short, relentlessly robust.  Fred obviously knows nothing of my time spent weeping and the suggestion that that might be one of the chief occupations of his boudoir would shame him.  
Fred likes the more complicated explanations.  Me?  I'm all about Occam's Razor.  We attract addicted Catholic carnies because the Haddock Corporation opened a detox/rehab and decided to headquarter it in our barn, next to its tantalizing rope structures (connecting to the Manor proper via the Computer Turret), which fairly sings to those with gymnastic training, which is most everyone.  Oh, right, and we are smack dab next to Abbot Truffatore's Internet Office Supply Center, cleverly disguised as a rather ancient monastery. 
Ah, well.  Let's just say that our former silly Saturday night pot luck neighborhood suppers have become polarized affairs, whole long tables divided by potato salad recipes and biotechnology ideologies.

Within it all, Fred, Bianca Castafiore -- the Milanese Nightingale -- and her accumulation of friends and paramours, lately a troubling va-et-vient between Sven Feingold, Keeper of the Maze, and his son, something of a Rodrigo, Cabana Boy... Well, anyway, within our slightly fictional environs, we thrive, we fail, and we survive, happy, happy, happily enough.

I, the Retired Educator, the Prof-de-Rien, am required by Universal Laws (which I am, you may be sure, constantly appealing) to dip my fugly purple toes into your reality on an almost daily basis, am primarily sad.

Which is a vast improvement!  Remember the many stories of being sad and in pain?  Sad and disappointed?  Sad and confused?  Sad and desperate?  Sad and half-way liking it, as it requires so little of one's self, if you allow it an "and," a depressing companion of some sort.

But leave sadness unpaired, and pure -- and it's not a bad thing.  Pain, disappointment, confusion, desperation, self-pity: these are the demons with which you don't want to live or die.  Each a separate, winnable fight, and sometimes not so much a battle as a shrugging-off.

I am sad at the suffering of those I love and know;  I am sad at the suffering of those I love and will never know.  I am less and less sad for myself, suffering through each day, thoughts and dreams more and more taken over, like some rippling silver pensieve for the excesses of those I love, by what is happening to dear Lumpy, the Mother-Units, the dear brother of the West, tumbling, tumbling all.

The tumblers and the tumbling include many others, the past beloveds, which we all know last forever, and the tumblers and the tumbling are often as hilarious and sweet as they are fast and tragic.
It's as much a prolonged fit of the giggles in a pew on a long ago Sunday as it is an image of concentric infoldings of nausea and confused effort.

But I try now, in the public eye, to smile, and to ask my serious things by wrapping them in filmy rustling tissue papers and raffia.

I do miss the organic pig farmer from across the way.  She wasn't a Crack Whore, quite, but maybe that to which a Crack Whore might aspire.  She first made her way into the blog, officially, at least, in January 2013, about which we reminisced in January of this year:

Do you remember our neighbor, the Organic Pig Farmer?  With pure poetry, I introduced her here exactly one year ago: 
In other local soap opera news, we are never at a dramatic loss these days thanks to the vocal stylings of CrackHead Lady Across The Way, who turns out to be a very well-known organic pig farmer.  She steals the limelight with soliloquies to her Ugg boots and curious crowds gather -- mid-morning and again at midnight -- to watch her use the muddy pits of the hog lot as an exfoliating (yet wonderfully moisturizing) body wash. 
Even then, something told me that trouble was afoot, and I swear I hold no prejudices against muddy crackhead exhibitionists.  Plus, bacon is "the" ingredient in haute cuisine, and we were thrilled to have such luscious pigs so close by, flavor on cloven hooves.  On her clear days, we were working with her and our resident geneticists on creating a tasty pig that ruminated -- which we figured would have burst open a world of consumers hungry for bacon, even if they wanted to be snooty and call it pancetta, which is hog, excuse me, pork belly cured with salt and peppered with peppercorns, fennel, nutmeg, and what have you. In Italy. 
 Harrumph.
But making a ruminant of a single-stomached pig was proving more than our animal husbandry and genetic experts were able to accomplish within a single season, and capturing the attention of the crack whore organic pig farmer, genius though she was, was nigh unto impossible.  The Jewish people shall not know -- with hearts' free of oppressive judgment -- bacon in 2013.  Don't believe the fast talker who tells you its easy to increase salivation, thereby increasing the microflora necessary to the decomposition of cud, or that making a pig's teeth incessantly grow to accomodate all that chewing, is easy.  That person is a ruminatory fool.  In any event, we'll miss her, and the promise of bacon. 
[....] She was evicted about two months ago. 

Well, I suppose SOMETHING in this blog post needed writing.  What exactly, I cannot say.  Perhaps I will throw myself on your mercy, Dear Readers, new and old, to discern what it might be.  Beware science?  Beware genetics and its environments?  Love your neighbor?  Be your brothers' keeper, but accept and respect their keeping rules.

Yoga will help, as will Tai Chi, Qigong. And Twister.




SUN LU TANG (Sun Tai Chi Chuan)
Zayayuma 
Uploaded on Jan 30, 2008
http://www.suntaichichuan.com


Martial Arts Therapy


© 2013 L. Ryan

Thursday, October 16, 2014

Nighty-night, all.

Between both hands, I've an aggregate of 4.5 usable fingers.  Three on the left, and the remainder of 1.5 on the right.

The 4.5 that are vacationing are trying to contract, are cold, a little bit painful, and extremely sensitive to contact with any thing or even moving air.  Just like in those golden days of yore when CRPS was present but unknown to me by any acronym.

Yesterday was frustrating, in that I felt compelled to clean our small portion of The Manor, which entailed much dropping of things.  However, I also discovered that vacuuming covers a multitude of sins, such as screaming, nonsensical cursing, and loud imaginary conversations with the Malignant Authors of My Condition.  It was also a great success in that I did not wrap the vacuum cord around any of my wheelchair wheels, a very embarrassing event on those exceedingly rare occasions when it does happen.

I'm going to bed as soon as this bit of nothing gets posted -- because tomorrow is Thursday!

We have to be at the Lone Alp Medical Chalet at 9 AM in order to see a neurologist.  Not a problem for most, it's pure dread at Marlinspike Hall, as Fred and I have been pulling Night Shifts.  We trot off to sleep when most of the Domestic Staff and Wandering Cistercians are just hitting their stride. Even the Crack Whore maintains a rigid adherence to office hours proscribed by circadian rhythm.

After enduring the condescension of the neurologist who cooed at me, telephonically, "Ms. Profderien, I want you to know that I believe your pain is real," we head back to the Western Wildlands of Tête de Hergé and meet up with the Occupational Therapist.

As Brother Lumpy's famous bedtime stories used to go -- "Meanwhile, back at the ranch..." -- Brother Lumpy will have his final radiation treatment tomorrow.  Maybe not final, as in "ever," but final as in "for this portion of the season." It has had a beneficial effect in that his pain level in the shoulder region, at least, is down to a "4." However, he's had horrible problems with nausea and vomiting, so the prayer there is that the end of radiation brings a lighter gastrointestinal load and even more pain relief.

And Thursday sees StepMom Boom-Boom Baba will be facing her worst fear and be transferred to a lovely Assisted Living Facility in the same town as her daughter and her fearless partner.  The dream of living out her life at the ocean-side cottage is over -- but she's blessed to have the resources to be well cared for and live near her daughter.  Boom-Boom Baba will remember that her daughter loves her to pieces in a few days.  In the meantime, should you live in the coastal Carolina region and are approached by a fiery-eyed 85 pound former ballerina in her mid-80s?  Run for your life, because she is very angry.

As for the biological true bloods of the family, meaning those birds of a feather flocked in the more mountainous regions, I guess their Thursday will be of the run-of-the-mill sort.  My half-sister will fleece someone of either money or sympathy -- if it's a great Thursday, maybe both!  Her son, my quarter-nephew (wish I'd paid more attention in Dr. B's anthropology classes on kinship charts), will battle his illnesses and combat his life challenges with aplomb and panache and other fancy words for Kid Courage.  My biological Mom will travel in and out of dementia, visiting with her deceased husband while cleverly hiding from him her recent marriage to Bill O'Reilly.  She so sweetly and unselfconsciously told me she loved me last week that I was quite taken with the idea and have rolled her words around my brain so much that I almost believe this unanchored assertion.

I've an aunt and uncle there, too, who seem lovely -- delightful, even, and I hope their Thursday is uneventful, peaceful.  Oh, and there's my buddy John, and his lovely Mom, my sister-in-law. Which posits a half-brother, but I am not sure he really exists.

Then there's that guy out west, whom everyone swears they love.  Myself, included.  Smooches galore to ya, and oh, how I wish you were here. You have a beautiful day, SweetCheeks!

Nighty-night, all.




© 2013 L. Ryan

Thursday, October 9, 2014

It's important, so do it.

Quick, note the day and time:  I'm having a productive day.  Two loads of laundry, the weekly refilling of the med box, several psychological evaluations of the Feline Triumvirate, orientation of several new Marlinspike Hall Manor Gift Shoppe volunteers, coffee -- perfectly strong and I did not pour boiling water in my lap in its making!

Sure, there were errors, flukes, lots of pills on the floor, and the Gift Shoppe may be in retail peril, but there is an abundance of clean covers, ranging from light and kind to tender skin to heavy and cold repellent. None of the cats aberrant behaviors have improved but we have lowered alert levels to DefCon 2, hoping that we can continue to deescalate tensions and avoid Buddy killing Marmy, or Marmy shifting from clawing defense mode to slashing aggression.  Most of all, we would like Dobby to retain some fur, as when the little guy is stressed, he releases all of his hairy hairs, usually on my clean clothes.  And, if we put all our desires out there, well, we'd like him to shut up, as well. He's the Town Crier of our world and, honest to God, it sounds like a nonstop tirade of a lisped "Oyez, Oyez, Oyez!"

Ahem.  Yes, I'm having a day!

My right foot is probably as small as it's ever been in the past 12 years. If you ignore its purple and frigid state, well, hell, it almost looks like a doggone foot!

The claw phenomenon is, indeed, spreading to two fingers on my left hand, but rather than cry over that (we now cry for an hour when the lights go out at day's end), I am forcing that hand to do extra duties.  I suppose someone without CRPS would call the doctor.  I have been taught not to, trained better than a seal.  Oh, how to stave off the urge to balance a beach ball on my nose?

I am daring to see another Kaiser Permanente neurologist next Thursday.  Yesterday, if you had dared to ask, I'd have told you it was a hoop to be leaped through, or thrown through (by the neurologist, or Fred, perhaps... maybe even Lumpy, if he could work up the strength).  Today, I've decided to focus on researching these sudden and completely un-freaking-expected changes in my upper extremities.  Research as only I can.  I have awesome research powers, friends, and they, coupled with unerring insight, rarely lose me in a corn field.

Don't know where that came from, that whole "lose me in a corn field" thing, but I like it. So it stays.

So next Thursday, yes, we slough off the history of Kaiser Permanente's abysmal neurology department (though I hear that EAST of the Lone Alp, they have better staffing) and we politely make the focus saving my hand function.  The OT kept concentrating on the pain of it, not hearing my oft-repeated: "I can handle the pain... what I cannot handle is losing the use of my hands."

It's easier to focus on the amorphous and try to score points for ass-kissing empathy, sympathy, compassion rather than brainstorm with me how I am going to toilet myself, wash, and manipulate forks, knives, knobs, buttons, cats, Fred, paperwork, pens, computers, car doors, seat belts, coffee cups, telephones, and pills, pills, pills!

Much better to wheedle: "It must hurt a lot.  Does it hurt a lot?"

Button my shirt, bitch!
Dice the Holy Trinity of onion, bell pepper, and celery.  Or the required base to a magnificent, fragrant stir fry:  ginger, garlic, and several optional thirds -- onion, chilies... none of that to be confused with the saucing options.  Don't get excited, Therapist, about a perceived ease to the saucing, because the saucing involves mixing, and the opening of many tiny bottles, and the outpouring -- precise outpouring -- of fish sauce and sesame oil and the many variants of soy and chili and sweet/sour viscous liquids.
I had trouble washing my face last night and dropped my toothbrush in the toilet.

But that was last night, and the OT was Tuesday, and won't be seen again until a few hours after the neurologist next week!

I've a firm grip on this day, still.

Part of that vise-like hold has been enabled by merely turning off all the phones and watching a few episodes of what I call a soap opera, but Fred insists is a "drama series." Yay for solutions, because they're solutions!

Clearly, giving my brain, such as it is, and these hands, such as they are, access to a keyboard has not been conducive to what pop stars like Dr. Phil might call "self talk." Dr. Phil is a marketing genius and a professional fraud.  I know the difference between what I type and what I actually feel.

Harrumph.

Time to finish my chores, turn the phones back on, be an encouragement to Fred and the hulking, skulking cats.  The genetically indentured Domestic Staff Executive Committee has requested a meeting with the Haddock Labor Relations Board, and judging by the steely glint in a few eyes, there are more issues than territorial disputes and genetic engineering snafus on the table. I think, I am guessing, I assume... that they want a bump in salary, an expansion of benefits, and some minimization of their essential serfdom.

I could be wrong.

Last night, when I turned off the lamp beside this godawful hospital bed, after I threw the stupid washcloth gripped by my right claw all of three feet (after a full wind-up and high kick), before I picked the 90-minute "sleep" music option (which started with dear Simone's "Go to Hell"), I spent an hour crying.  I didn't time it, the hour is a guess.



All I could see was Lumpy's sweet face, his eyes gone deeper than deep seems possible, and dark, much darker than seems fair.  I don't see the two lumps he says are there -- in his skull, one on the left hairline and the other at the base of his jaw.  Granted the jaw is disfigured and I can actually see it, but I like to pretend that I don't, and that his well-trimmed beard just has an inexplicable scruffy area.

To me, he is beautiful, handsome.  And, damn it, other worldly.

Can I convince you, you who are as mortal as he is, that he does not deserve death, that the world needs him, that nothing will ever be the same when he dies?  That a whole generation of mediocre writers will not have the touchstone of his classroom f-bombs and hilarious illustrations of rhetorical fallacies by the citation of the authority of South Park and The Simpsons?  They won't learn the crucial life lesson, the crucible of working life, that he models when explaining, over and over: "I grade what you put in front of me."

You haven't seen him mime gold medal winning Olympic ski jumpers.  He's a little over 6' 4" and could launch himself off the icy ramp, and extend his upper body, straight as a rail, over his legs until his slightly Roman nose seemed (and therefore, was) mere inches from his skis.




A Normal Hill specialist, his split leg landings, with arms making delicate ballast adjustments, would be the envy of any world class orchestral conductor.  The arms part, not the leg part. Unless we're talking some sort of weirdly energetic orchestra conductor, or perhaps an afflicted one, suffering from neurological tics, Parkinson's, or Tourette Syndrome aggravated by the brass section, probably the tenor trombones.




So tears turned into giggles in the dark.  And each cat came by, politely following their peculiar rules of Buddy first, Marmy second, and -- everpresent, very somber -- little Dobby.  Dobby never leaves me when I cry, though he may position himself so as to be unseen.  On the top edge of the pillow, perched on the corner of the bedside table, alertly upright between my feet.  He didn't learn the "don't stare" lesson in kittenhood, so he stares, and mewls softly.

Like I said, the hour was just a guess.  I also visited with some other beloveds, before relaxing my mind into the recurring memory of me, seated on Lumpy's shoulders as he walked, slowly, from the shallow end of our swimming pool to the deep end.  Yes, that put him under water for about a third of the journey, but never did he hasten the pace, break the rhythm.  Sometimes the tipsy Happy Hour boozers at poolside noticed, sometimes they did not, but it was something to behold.

Well, I just promised Fred, The Castafiore, Sven and his son, Cabana Boy, a healthy dinner of roasted organic vegetables and some sort of fish.

A chance to wield knives and cavort with a very hot oven!  Now, THAT is what I call Occupational Therapy. No co-pay and a delicious pay off at the task's end.

Readers?  Love the ones you're with, and find ways to transmit, send, convey, and give away the love you have for those not within your wily grasp.  It's important, so do it.








© 2013 L. Ryan

Wednesday, October 8, 2014

The Me They're Expecting

More CRPS hilarity.

I had my "evaluate and treat" first appointment with outpatient Occupational Therapy yesterday. Why?

Darling Readers, you really must follow along.  This blog is nothing if not one long complaint, studded with humorous illustrative anecdotes, spiced and spruced by the esoteric contributions of life in Marlinspike Hall, ancestral home of the Haddock family, and all situated in the Tête de Hergé (primarily the region west of the Lone Alp).

I've been dumped into the outpatient therapy division of Kaiser Permanente's HMO because about a week before my foot and leg decided to develop cellulitis, I woke one morning to find my right hand had turned into a claw.

Not to bore the More Dedicated Readers, here's the situation, upper-body-wise.  My left hand is functional but weak.  Mostly it is a great hand, friendly, compliant. However, the left arm ascends into sartrean nothingness, as I lack a shoulder joint on that side.  This limits the range of motion, and definitely any comfortable range of motion, in the arm, and the reach of the hand. Try washing the right side of your body with a left hand that won't reach your right arm.  It's hilarious.  It can function well within the confines of its reach, and can and does go beyond, usually incurring plenty of pain as a result, but immense satisfaction should my desired action succeed.

What comes to mind is the most recent valiant performance of that left side -- tossing what turned out to be a horribly excessive amount of kosher salt into a delicate one-pot wonder.

Ah, I stray.

The right shoulder is a prosthetic but only minimally painful, due to the ministrations of the most wonderful orthopedic surgeon on Earth.  I tend to forget the elbow reconstruction of some six or seven years ago -- also an excellent job, though the hardware is beginning to shift.

Shifting hardware.  Now that's a sensation.

I've had radial and ulnar palsies in that right hand in the past, and each time they just went away, like in a fairy tale.

The current claw has only gotten worse.

And was of minimal concern to every doctor, nurse, and housekeeping staffer I encountered, until a very sweet and knowledgeable OT made me a very personal splint while in the hospital.  She pegged it as CRPS, completely neurological, and one of those things that "just happens" with CRPS.

You go to bed with a functional hand and wake with a claw.

So the only advice was "wear the splint 2 hours on, 2 hours off, and sleep with a rolled up washcloth in the vise grip of your lobster-like appendage." Oh, and go see an outpatient OT.

The news yesterday was the same.

After I mentioned that my goal was a return to normal function, and to not hear that nasty phrase: "This is your new normal."

Five minutes into the evaluation, my goals were reiterated by the therapist, in spades, leading with: "It looks like this is your new normal.  Our goal is to keep it from getting worse..."

It went on and on.  She knew her stuff but was into reinventing the wheel, which would be fine, were that of benefit to me.  Lots of manipulation of both hands via various tests.

With the result that my pinky and ring finger on the LEFT hand are now curling, curling inward and responding with snarling and snarky pain when I insist that they function correctly.

Yesterday was Lumpy's birthday and so one call, made while he was out, consisted of me singing the requisite tune to his answering machine (yes, an answering machine), while the second call consisted of him pumping me for info about me.  The little I got from my dear brother was that he barely made it through Monday's classes, that the radiation has done nothing for his pain, and that he ended up buying the medication that his oncologist, pharmacist, nurses, and insurance helpmates could not manage to have correctly approved, filled, and paid for in over a month.

We shared a moment of tired awe.

He's brilliantly brave, struggling to make his voice vibrant long enough to get through the birthday calls.  No mention of my gift, so that was a bust.  I suck at gift-giving, so there's no harm, no foul.  I just wish that this year, of all years, I might have gotten it right.

I don't think I can lose him.

Totally different sort of despair than losing hands, losing a precious friend, mentor, sibling. He still needs to teach me how to snap my fingers correctly, and how to spit.  I want to play one more game of hide-and-seek, where I hide for hours, and emerge to find that he left for baseball practice hours ago. Malted milk balls galore, water polo for hours, musicology 101, and half-court tennis matches. Agreement that there will always be a need and a coziness in literary history, no matter the lit crit trends.

Figuring the day had not slashed at me quite enough, I made other calls -- the call to Lumpy having been desired, just unexpectedly... hard.  I checked in with the Sister-Unit, who was, of course, in a bookstore.  The conversation acquired that whispering-in-a-library quality and bored her, apparently, as I got a sudden "gotta go, hang in there, and stay tuned!"

It could be that she was busy.  Maybe she found an interesting book, or met up with a beloved fellow bookworm. Her birthday is day after tomorrow.

She and Lumpy are step-siblings, born three days apart.  My brother was born in London, my stepsister in North Carolina.  Occasionally, my stepmom and those two would mess with school registrars' minds.

"Twins?" they would hesitantly suggest.

Stepmom would lay out the geographies of their births, as her son and daughter, clearly fraternal as heck if twins, stood looking twinly.  Then she'd deliver the coup de grâce:

"Longest three days of my life."

Anyway.  Sister-Unit relayed that stepmom had fallen, but was okay, and that her momentous day -- a move into Assisted Living -- was penciled in for next Thursday. Stepmom, all 85 pounds of her, has turned into a striking viper at the mention of it.  The gift of short term memory loss at least shortens the period of hissing and tongue-flicking, but no one envies Sister-Unit and her Studly Partner their task next week.

It is sad, but the heart hardens over what must be.
Or mine has.
What a terrible admission.

Lastly, I called the BioMom Unit. Everything in me wanted to scream at her that her son was being laid low by vicious cancer and that I resented being born, but instead we talked, at length and with considerable comedy, about how her dead husband is cheating on her -- but only with pregnant women.  He was an Ob/Gyn. She was a hoot.

Usually, I try to gently reorient her.

Not yesterday.  Within her concocted world, she made perfect sense.  So I reminded her how much her husband loved her, and she rested easily in that.

I cannot slough off more work on Fred, with the feeble excuse of having no hands.  This cannot be my "new normal."

I've been thinking of dear Lumpy all day -- office hours, two classes, radiation, and an infusion of chemotherapy.

Convinced that my new normal reeks of my continued uselessness.

Time for the splint!  Time to check on The Fredster. Time to extract the "poor me" from other sentient beings' beings. If they ever do want or need me, this is not the me they're expecting.

as it was in the beginning... now the thumb is a quivering
quibbling digit.  all praise the mighty index finger!

















© 2013 L. Ryan

Leave it in odd places





Print it.

Gift it or leave it in odd places:  train, bus, and airport terminals; tucked inside holiday greeting cards; between cans of diced tomato at your favorite grocery; mixed in with deposit slips at the brick-and-mortar bank; sell it as a raffle ticket; slip past the Secret Service and place it in the center of the presidential podium.

Give it to nurses, patient care technicians, doctors, dentists, physician assistants, occupational and physical therapists, medical office managers, receptionists (both friendly and reptilian), and insurance reps.

I laminated a few for our traffic-stopping crack whore to hand out as Public Service Announcements. She's nothing if not civic minded.

[Recently, Fred thought she'd been injured, as she was doing a crotch-clutch as if she were in pain. She was still resolutely completing her complex routine of concentric circles, but with only one hand a-wavin' in the air. Things were looking lopsided.

Sweet Fred: "Can I call 911 for you? Do you need help?"

Young woman's vibrant response:  "No, s'okay. I'm a crack whore."

Fred, kinda speechless: "Uh. Okay! Give a holler if you change your mind."

Me, to Fred:  "'Give a holler if you change your mind...' -- Really? Oy." ]

Anyway.  This CRPS IASP blurb of a short-cut may soon be out of date, but it's the best thing I've seen in a long while, precise enough to pierce the filmy, bored eyes of the code-obsessed, mentally billing Kaiser Permanente hospitalist who is pretending to listen to your medical history.

Which reminds me.

I've been in and out of so many medical facilities since mid-August that the experiences blur. But there are moments that won't go away.  Like the encounter with an Emergency Department Physician's Assistant at Northside Hospital.

Their goal and need is to get patients to focus on what, specifically, brought them to the ER/ED that day.  

I was there because the infection in my foot and leg was out of control.  Easy enough.

But incredibly complicated, because -- while *I* am focused, the health care professional is usually a CRPS virgin -- the PA is sidetracked by the bruising, welts, swelling, discoloration, and temperature of my arms and legs.  They actually think this is something that maybe I overlooked, forgot to mention, or, being as dumb as a rock, have confused with this ridiculous story about cellulitis and infection.

She grabs my legs, pokes my feet, engenders my wrath and raises my pain level for hours.  No longer listening to me, she says aloud, "This is not normal... The foot is cold, there's no infection... Why is this so painful?" All the while, I am repeating:

"I have CRPS in all four limbs.  You may know it as RSD, which is outdated and scientifically flawed, both as a name and a concept, but hey -- who cares, so long as you stop rubbing your gloved hands up and down my incredibly goddamned painful limbs, you stupid cow." 

She pretends to listen, says "uh-huh, uh-huh," and then says, "What's wrong with your arms, what is wrong with your right hand?" I give an alternate version of the CRPS speech.

"Uh-huh.  Uh-huh.  CRPS, in all limbs.  Got it." 

While continuing to poke and press into swollen tissues and asking how and why they are so discolored and how long has the blood supply to my legs been compromised?  ("Because that's the nature of CRPS and the blood flow is actually very good.")

"Uh-huh."

I'm plastered to the ceiling, my legs and arms in spasm after this cow-handling.  Fred must have sensed impending verbal warfare and shoots me a look, a don't-do-it look.

As she is washing her hands, her back to us, I reiterate that distinctions must be made between the reason I am there -- cellulitis and needed intravenous antibuotics -- and the underlying constant of CRPS, which can confuse the picture.  I confess that the pain has me beat and request pain meds. This is a rarity, for me to ask for pain meds in any ER/ED. But it was... rough, and now intolerable, thanks to another vicious HMO exam.

Out it came.

"Do you know what CRPS is?" I asked, in an aggressive, angry tone -- meaning quietly, slowly.

"Nope." 

NOPE.  The casual arrogance of a NOPE?  Really?  I mean, really?

"Do you want to tell me what it is?" 

"Nope.  Go look it up, educate yourself.  Which is what you should have done before you set foot in here.  The exam you just did?  It was pointless, since you were uninformed about the underlying chronic condition before you.  Had you known what CRPS is, your exam might have yielded useful information.  As it is, you've succeeded in sending me into a pain spiral while you get to waltz out of this cubicle and plug into some outdated summary article about RSD..." 

"I was not TRYING to hurt you, Madame Retired Educator. We are here to HELP you.  There is no need to be rude to me." 

Then I got it from Fred.

But I ask you -- when is enough, enough?  How many times, when I am sick, even very sick, do I have to face these lying medicos who feign knowledge and who do HURT me?  I so love the person who says, "I'm not familiar with CRPS, though I've heard of RSD. What do I need to know?" It's a sign of intelligence, and defuses my anxiety on the spot.  There was one drop dead gorgeous ER physician (and I cannot recall what he looked like, as his looks were not what was so darned good-looking) who said something close to that, while purposefully crossing his arms across his chest in the universal stance that reassures: "I am not going to touch you without your permission,"

Fred, learning that I was to be admitted, departed for Marlinspike Hall and Manor duties that never end.  He was still emitting that parental I'm-so-disappointed-in-you vibe, so his departure was fine with me.

When next I saw the Northside Hospital ER/ED PA, she announced that she was arranging my fast track admission "upstairs," and that they would start the antibiotics before I even left her department.

I apologized for having been rude.

She said, "Well, I am glad you apologized.  I know that you don't feel well and we don't always behave our best when we're hurting." 

I could have knocked her into next week.

What I needed was our beloved crack whore, whirling and twirling, one hand holding her crotch, the other offering the obsequious PA a laminated version of the IASP diagnostic criteria for CRPS.

So here you go... Print it out... Spread the word... Do good, not evil... and never, ever be "rude." 

And yes, I meant my apology but also adhere to the wisdom of Mary Chapin Carpenter:
"Forgiveness doesn't come with a debt." 





For the best understanding, I'd love to hand over the document below to the medico about to commit neurological rape, but I can attest to stunted attention spans.  No one reimburses for reading time.
But perhaps you could print out a few copies on a nice sandpaper... and leave them there where 
toilet tissue may run into short supply,




Friday, October 3, 2014

With Apologies to Jonathan Swift

My brain is not always lame.  Still, I've no recollection of writing this but found it posted under my atrocious Facebook moniker.  Facebook is, itself, atrocious.  I find myself dyspeptic and bilious within minutes of reading through the memes and appropriated mental pablum that piles up there. Had not checked in for several days, and, really, were it not so enmeshed in the rest of the interwebs, and were some of my "friends" not addicted to it, I'd save myself further gastrointestinal distress by firebombing the joint on my way out the back door.

Anyway, on 20 September, I jauntily opined this, and probably followed it up with a demand that people post it on their timelines as proof that they really, really cared about me ("and I already know who won't do it, ya worthless pieces o'poo!"):

CHANNELING JONATHAN SWIFT: I know President Obama follows my timeline closely, as well as Chuck Hagel and the Joint Chiefs. So here's a Modest Proposal, to toss in the policy pressure cooker, Die Anführer:

I concur with the President that we should not [further] sully our pristine hands by aligning the US in *any* way with al-Assad, except through our always precise perception of which "rebel group" of "freedom fighters" truly have the average Syrian's well-being at heart -- and into whose trustworthy, well-trained hands we should deposit many, many weapons, defensive as well as offensive. However... The duly elected President of Syria has proven acumen in counterterroristic submoral militarism that could be exploited to everyone's advantage. He has shown prodigious talent at surgically targeting select populations for termination by gassing, and, even better, a passable plausible deniability in the aftermath. This technique, born of pest control, and which recalls the [never again] money-and-time-saving efficiencies of the Third Reich, would have minimal collateral damages, would secretly thrill the most conservative wings of the western political continuum, and would further cement al-Assad's reputation among his regional compatriots. And there'd be a shitload of dead ISIS / ISIL combattants, including some Brits, "Americans," Canadians, Aussies, and other radicalized wasted youths from beyond the Middle East region.

This entry garnered no "likes" or "LOL"s from the Facebook crowd.

I do have, of course, other equally compelling military and pseudo-diplomatic strategies to share with leaders of the Free World, but heard a rumor this evening about the Turkish army joining the confusion of alliances, and that, my "friends," that will change... everything. I would look for a Syrian regime change in short and overwhelming order.  Maybe I was hallucinating?  If the world is still that to which my eyes open tomorrow, then tomorrow will be soon enough to discover whether I dreamt that development or whether... sigh.  Good night, all.





© 2013 L. Ryan

From Stealing to Flying and Back to the River: "They find freedom being part of the elements"

Something lovely stolen from American Idyll. -- it's hard to just steal one thing.  So a tip of the hat and an index alongside the nose to the proprietor for introducing us to Jesse Hall.  I assume he is the poem's author but am not sure.



One minute poem of the Grand Canyon from Jesse Hall on Vimeo.



From the beginning to the end, 
everything changed. 

They dismounted the surge of prominence, 
and earned a rock-steady heart. 

Thats where their rhythm is found. 

They know the role of a trickle in the creation of a masterpiece. 
They row into the abyss of being, 
adrift in endless time, 
hearing ancient echoes. 

They find freedom being part of the elements, 
traveling to where all worlds merge. 
Life's knowledge drifts down onto them, 
and blows right into their skin.




Now, a wonderful, airy tangent:

Jesse Hall was the "winner of the first season event of the ProBASE World Cup Tour 2011."
BASE jumping is the activity of parachuting from a fixed object as opposed to skydiving, which is parachuting from an aircraft. Fixed objects can be buildings, antennas, smoke stacks, bridges, power towers, cliffs, cable cars, dams or any other object high enough to jump from.The acronym B.A.S.E was coined by Carl Boenish and stands for Building, Antenna, Span, Earth which are the 4 most popular objects BASE jumpers practice their sport from 
Of course, it's the wingsuits that are the stuff of my flying dreams! In the beginnings of my loss of mobility, I watched dancers and gymnasts, then parkour and free running. Now, it's wingsuit BASE jumping, waking with scraped and bloody knuckles from skimming mountain walls.





Parkour and Free Running still give me relief from gravitational stasis, the release necessary to then be able to turn, smile, and be a gracious gimp.  But the BASE jumpers have taken over top dream billing,





Back to the River for tonight's ending -- I hope to end tonight in official "wee" hours, instead of the 7:30 AM bedtime of the past few days.  This is a poem written by Kevin, of Kevin's Meandering Mind, published there on April 20, 2014, in a post titled "Wonder Poem: Grand Canyon Vertigo."




Thursday, October 2, 2014

A Chagall for a Very Good Cause: RSDSA's Annual Bounty of Hope Gala and Auction


It's the beginning of the Besiegement Season.  The gimme-gimme hands are out early.  Here is one request, though, that may appeal to some of you Darling Readers.  It comes from Jim Broatch, Executive Vice President and Director of RSDSA, the best, most reliable support and information source for CRPS patients, anywhere.

I know.  Why don't I, on "behalf" of the Haddock Family, donate a couple of Caravaggio, and perhaps even the Holy Foreskin, recently transferred to Marlinspike Hall due to an unfortunate oversight by Novice Master, Father Guido, which led to the equipment failure of the modified domed pastry tray that contained the relic?  Well, if you've ever been on the receiving end of an alliterative harangue by Captain Haddock, or sat through interminable guitar masses at a Cistercian monastery not known for its musicality, you'd not be egging me on, you reprobates.

But hey, you've got schtuff, too!  And "gift certificates, airline miles, timeshare vacations, unique items like sporting event tickets, shows, or services"!  I know you do!  Promote your company, show off your brand!  Shoot, offer to do a striptease!

In all seriousness, mwa ha ha, CRPS sucks.  I find its capacity for suckitude mind-boggling.  Just in the past 6 weeks, it has decided to take me back to CRPS school and show me some of its new sadistic tricks.  If you like me, love me, put up with me for hard-to-discern reasons, and/or care about my occasional straightforward posts about the neurodegenerative disorder, please find a way to make the 30th Bounty of Hope Gala for RSDSA a fan-freaking-tastic fundraiser.

Maybe no one would miss the Chagall detail study for one of his remarkable nine stained glass windows for the Union Church of Pocantico Hills in New York * -- to accompany and fulfill the last work of Matisse, a rose window in his cut-out style.  We found the Chagall miniature, inexplicably and carefully installed, in a bricked up garderobe in a southwestern pseudo-turret.

We'll have to figure out how to "borrow" one of Captain Haddock's miniature submarines and plot a course through the worm hole entrance in our moat/marina... but, pshaw, that'll be the easy part.  Be on the lookout, Jim!



The Good Samaritan paying the innkeeper for the upkeep of the traveler
Marc Chagall, Union Church of Pocantico Hills, NY

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

Dear Lisa,

RSDSA hopes that you will take a few moments to read about our upcoming 30th Anniversary Bounty of Hope Gala and decide to participate by donating to our live and silent auctions.
On Saturday, October 25th we will be hosting our 14th Annual Bounty of Hope Dinner at Springdale Golf Club in Princeton, New Jersey. We anticipate approximately 200 guests at this function and the fund raised will go toward research, education, and support of our CRPS community.

To make this event as exciting and extravagant as we hope, we will need your help!Please consider supporting our event by donating gift certificates, airline miles, timeshare vacations, unique items like sporting event tickets, shows, or services. In exchanges, you will receive some excellent community exposure and advertising. Your company name, address, phone number and donation will be listed in the Auction Brochure that we will provide to our attendees and will be available on our website page prior to the Gala. If you can not donate an item, please consider calling a few places in your surrounding community to see if they would be willing to donate an item to our live and silent auction.

Your donation can be mailed to RSDSA at the address listed below. In order for your item to be included in the Auction Brochure we must receive it by Friday, October 10th. Please fill out the attached Donation Form and return it to Christine at choma@rsds.org. You may also mail or drop it off with your donation to RSDSA, 99 Cherry Street, Milford, CT 06460.  If you have any questions please do not hesitate to contact us at 877.662.7737. 

Thank you in advance for your all your help and for supporting RSDSA!


Sincerely,
James W. Broach



Jim Broatch, MSW
Executive Vice President and Director
RSDSA




*  "Like Matisse, Chagall uses colored glass, but it is glass which has been etched with acid to create gradations of color within each piece.  Once the pieces are assembled, Chagall paints on it as if pinging on a canvas.  Using a black glass paint called grisaille, he creates the details in the figures and mitigates the light.  Chagall adjusts and manipulates the grisaille with brushes, brush handles, metal instruments, and even his fingers.  Lastly, he brushes on a yellow silver stain to give the windows their final sparks of color."

Saturday, September 27, 2014

Sleep, Domesticity, Present Participles 'n Stuff

This is a post found hiding in the Draft Pile... and every crackerjack editor on site is scratching his head, as there's no discernible reason for it to be lurking in the stacks.  It's not great.  It's not terrible. Some of it makes me laugh, but the jokes are for insiders.  Some of you ARE insiders, so there, that's justification enough to let it see the light of day. From textual archaeology, I am dating its origin as May 2011, give or take a decade.



Photo of the Hejrl Hede "Living Museum"

Good morning, and I really mean that!

Okay, so I have a Kotex pad wrapped around my leaking leg, kept in place by a long string of gauze, tied in a cute little bow.  I haven't showered in what I even consider "a while," and no one, not Fred, not La Bonne et Belle Bianca Castafiore, and not a single member of the Domestic Staff here at Marlinspike Hall, the ancestral home of the Haddock clan -- NO ONE -- fed the cats.  They are circling my leg, alternately mewling and hissing;  It's making me nervous.  It's also kinda hypnotic.

But hell fire and damnation, I feel so much better than my last effort at consciousness!

Nothing beats, apparently, taking both tizanidine and baclofen at the same time -- when you are totally desperate to stop your leg from spasming, jerking, and flying around the room backward.  I reached that point of desperation at approximately 2 am, and slept until 10 am, without once waking.  I feel so much better... it is beyond description.

So is this how it used to be, at the end of a *good* night's sleep?  I guess so.  I could learn to like this.
Heck... they ought to bottle this. 

Oh, the intricacies of pain, the psychology of it.  I wonder if I could manage my pain, possibly with one hand tied behind my back (with soft organic cotton, please), were I simply able to SLEEP?

The bed is soaked.  From my leg.  Totally gross.  All I can think to do (besides lots of laundry) is to wash the mattress down with soap, water, then alcohol?  Maybe use some Resolve?  (I dunno?!)

Unfortunately, we recently switched to a modern mattress, swapping our old woollen one for The Castafiore's Sleep Number Bed..  In a puzzling move, she, much like the ultra-sensitive Princess in the Hans Christian Andersen Pea Story, sleeps on a pile of the things now -- mostly feather, as was the want of the wealthy in Medieval Times (and ever since).   For historical accuracy's sake, as well as for her famous degenerative discs, the feathered layers are carefully interspersed with fresh straw ticking, and other mattresses of felt, wool, the straw's chaff, even grasses and seaweed.   Thank goodness, she gave up on the rice and oat chaff, which she only managed to crush into oblivion within a minute of her nightly repose.  The Agricultural Minister of Tête de Hergé (très décédé, d'ailleurs) has even consulted with us about his plans for the year's cereal crops -- so much depends upon Bianca's bedding choices.

Yes, you suppose rightly -- she is the bane of the Domestic Staff! In fact, we can only get a Mattress Freshening Crew to service Bianca's peculiar tastes thanks to the intervention of her personal... umm, well, thanks to the intervention of The Cabana Boy's biological father, Sven Feingold.  (It's a long story that involves diagramming the genetic aspect of our housekeeping staff's indentured inheritance.)

She even has the ornamented canopy, to top things off just so.  Her bed is so wholeheartedly medieval that the rest of her apartment fairly screams in Renaissance dissonance (remember, she once redid everything in the style of François 1 -- shoot, she *replicated* the man's bedroom and charged admission...).  See Anacoluthe

I think it might be that her sleeping chamber now resembles something of a stage.  Yes, that's the unconscious draw for The Milanese Nightingale.  Even going to sleep is theatre in the round around here...

Although there were canopies and curtains, these weren’t the full four poster beds with poles at each corner which started to arrive in the 15th century. In the late Middle Ages the best beds had hangings draped from a frame which was suspended from the ceiling beams (see left), sometimes supported by a tall bedhead too, and often with a canopy called a tester or celure. The actual bedstead was usually an independent structure within all the finery. Beds tended to be quite high and might be raised further by being set on a platform.


Hmmm. It would seem that not even a great night's sleep can cure me of my tendency to... what? Think in a lateral way? That's what I prefer to call what others might mistake for Wandering Dementia.

And, as I so frequently inquire: Whose blog is it, anyway?

So, beds.  A straw mattress is not such an ancient construct, did you know?  Actually, a bit of background reading tells us that the mattress form is probably not ideal for straw -- "loose" straw is preferable, in terms of comfort. 

Like all important domestic matters, our greatest needs require the steady, quiet attention of a string of present participles.  Stocking and cleaning the kitchen.  Milk, eggs, flour, and coffee or tea -- good coffee, good tea, mind.  Making bread (which is why it's not on the list).  Filling the salt cellars (from sea to celery).  Separating the recycling and taking out the trash.  Keeping a handy supply of toilet paper. Cleaning the toilet.  Doing the laundry.  Changing the straw, the various chaffs, the grass, and the seaweed in your mattresses.  Or, perhaps, in simpler places than The Manor I live in, just flipping the mattress and exchanging the Egyptian-cotton-high-thread-count sheets with some regularity.

Feeding all sentient beings, and tending the rest.  (Or:  Feed the cats, damn it, and water the tomato plants!)

Yes, feeding the cats is part of the domestic glue that keeps us going.  Is it really all that hard to remember, given that our Feline Remnant can be disturbingly vocal?  Do we need to relegate feeding our indoor pets to one of the inherited tasks taken on by the genetically-engineered Domestic Staff on site?  I think not.  And harrumph!

Okay, so, yes, I have written this strange little post over the course of several hours, adding a word at 9:30 am and a phrase at noon.  As I've done so -- enjoying my day while accomplishing some of what I've listed in the preceding paragraphs -- the strangest thoughts have presented themselves. 

Like...

Is there anyone else out there who has an extra-coverage, odor-absorbing Feminine Pad strapped to their shin?

Can I find a soul mate who understands how wheelchairs will track dirt all over the damned place, which is why one should sweep up after one's precious self?

Will I ever be able to find a quality elevated toilet seat, cushioned, maybe, with arms?  (And if I find it, will I be able to afford it, or will it join other such items on my Christmas Wish List?)

Can bandages soaked with serosanguinous fluid be safely recycled, and if so, do I put them with the aluminum or with paper and newsprint?

Is it ever acceptable to return a kitten adopted from a no-kill animal shelter (given an unrepentant and undeterrable penchant for chewing wires transmitting important data, such as blog posts)?

As the fog dissipates

I've been putting off blogging, though each day, lately, has proffered plenty of blog-fodder!  My head is not screwed on correctly, my memory is pretty faulty.  The people, animals, things, and activities that normally are my nominal saviors have fallen down on the job.  Or wised up!

Housekeeping:  The brave Ethan Hallmark died a few days ago.  You already know about the effervescent Brayden Martin.  His mom Maranda, brother Mason, grandmother Robin are blessed with the support of many friends, family, and memories.  Maranda's many off-the-cuff phone vids of a giggling Brayden, which, quite frankly, were starting to drive me crazy, now show themselves each as little jewels, shining, shining.  She did a great job raising that child and simply mowed down any circumstance that even hinted of getting in the way.

We were going to give Brayden one of my spare power chairs (that's right! my riches know no end!) and were even trying to make some adjustments and improvements, because he was a little boy, and, well, I am not.

Sven got out the Marlinspike Hall Treasury of Blowtorches and reconfigured the mind-boggling cloverleaf pattern on the underbelly of the chair.  Bianca Castafiore offered free picks of fabrics from her costuming collection that has clothed thousands of operatic divas over the years.  When she saw me with a glue gun and her precious Christian Lacroix courtisan costume (Hey! It was in the pile she said I could use!) -- she manhandled me.  Pins in her mouth, pinking shears, and microsurgical instruments strewn about, she cursed me, though I couldn't quite tell to what I was being condemned, or in what language. I heard some gutturals -- she may have gone Germanic on me.

Finally, spewing pins everywhere, she hollered -- and yes, Milanese operatic divas can and do "holler" -- "Retired Educator, you bilious brain fart! Brayden loves ORANGE and THIS is a wheelchair, hardly conducive to being covered in crinoline and skin-irritating brocades. What is wrong with you?  Go look in the mirror. You have "crétine" tattooed on your forehead..."

A courtisan costume designed by Christian Lacroix for the SF Opera's , "The Capulets and The Montagues,"
at the SF Opera's costume shop on Thursday, Aug. 23, 2012 in San Francisco, Calif.
Photo: Russell Yip, The Chronicle / SF




Well, in the end, it was beautiful and no one would ever notice our judicious use of duct tape.  I tried to ignore Captain Haddock's remark that it looked like a jeepney.

But something we'll cave in and call "circumstances" intervened, and our jeepney-opera inspired reinvention of a power chair ended up with a local woman who "needed me one of those," and we were glad it went to be of use for someone.

Brayden on wheels.  Laughing Brayden. That's mostly what Maranda showed us.  Well, there was courageous Brayden, miserable and steroid-cheeked, but still giving a thumbs-up, and laughing on command.  Such bravery in a kid gets its own reward, and so I am, guiltily, happy for him.

Ethan. I worried about Ethan, not in any specific Ethan-way, but in a general why-do-these-kids-have-to-be-so-god-damned-perfect way. Whenever he was presented in normalcy, and this young man had a lot of rugged, good other young men who visited daily, that's when I connected with Ethan.  As anti-hunting as I am, it was thrilling to see him "bag a buck" a little over a week before he died.

And I have no right to knock the ways in which people survive, and survive in horrid circumstances. My own circumstances lead me to find comfort in beauty, less and less in books, paintings, movies, and the quieter stories of derring-do, more and more in the actual eyes of actual people. Okay, okay, I'm also in awe of people who do the darnedest things.  I'm thinking of the Infectious Disease PA -- one funny and smart Ava Cooper -- who had a burning desire to see the underside of my Accursèd Right Foot.  Now, this could have been accomplished in several ways, most of which would have been painful, as the Accursèd Right Foot has taken on life in its own inimitable, separatist way.

Did I mention PA Cooper's outfit?  No?  Well, she reminded me of me, some mumblemumble years ago as I trekked about Berkeley and walked from UC-B to San Francisco, over the Golden Gate, and into Marin.  In other words, she was cute.  Black leggings and a striped tunic, happy to be alive. I think she had sparkles on her shoes, not sure.

So she lays down on the freaking floor of this exam room in the Infectious Disease Clinic, her left ear on the pristine floor, black hair cascading over the antiseptic tile, and peers at the butt ugly sole of mine foot.

I mean, doggone, woman, I'd be glad to prop this useless appendage on that green plastic chair over there... or you could lay down on top of god-knows-what bacterial Soup of the Day!

But it just confirmed my gut knowledge that ID specialists are unique and special, in other ways beyond their quirky, nerdy science.  Same goes for the guy we call "Sherlock," Dr. Phillip Brachman. The man cracks me up.  He does me the honor of taking whatever I say at its value.  Last time I saw him, I was sobbing, rocking, in misery.  I felt, however, that he needed to know I was listening and capable, even with snot running down my face and badly applied eye makeup smeared in avant garde fashion into a hairline fade.

"I only cry when I spike a fever or feel really rotten but it doesn't mean that I'm not HERE."

Only a good doctor would address that with a slight nod and continue his Sherlockian machinations with computer and pharmacists online and on the phone.  He does not remember the day that I decided he was the cat's meow.  It was way back at the beginning of the Lose-A-Shoulder-To-A-Biofilm-Infection saga.  Maybe 2007 or 2008.  I was in the hospital and for some reason, in isolation (musta been one of those MRSA scares), and had the deep need to exit my bed and get into my wheelchair.

Isolation rooms are often neglected rooms.  Things are brought in that can't then just be taken out, without a hullaballou of cleaning.  So my bed was surrounded by every bit of equipment imaginable, from IVACs to bedside commodes (3 for some reason that I don't even want to know...) and extra bedside tables.  It was a sea of redundant medical schtuff.

I managed to climb over the rails, not pull out any i.v.s or detach monitoring devices, keep the foley catheter intact (though I forgot to nab the drainage bag, still hooked on the bedrail) and shove a path to the wheelchair.  It's *possible* that I was febrile and hallucinating.

Once ensconced in my chair, I surveyed the room and burst into... you guessed it... tears!  There was no where to go, no direction to point my joy stick, that was not blocked by redundant medical schtuff. And look!  My foley bag is over there, and I am over here!

The door to my isolation room pops open, and Dr. Brachman's head pivots about, figuring I must be in there somewhere.

He sees me trapped in the corner, surrounded by beeping machines, poop contraptions, and mobile tables with immovable wheels.  Dr. Brachman (formerly "Infectious Disease Dood") never wore protective gear.  No bright yellow paper suits for that guy, and rarely even any gloves.  :Lots of handwashing, though.

Anyway, even at that point in my experiences -- I was almost medically virginal -- I already knew that doctors don't "do" stuff.  They leave that for "someone." Someone in Internal Medicine. Someone in Radiology. Someone in Ortho, in Pain Management.  In this case, I would expect an even less elucidated "someone," like a lowly nurse, or the even more lowly patient care technician. But Dr. Brachman crowed something like, "Let's get you out of there."

In super hero fashion, he tossed equipment to the left, to the right, out the window, shoved stuff into the bathroom, and soon cleared a path...

So that I could humbly go back to bed.

The story doesn't tell well.  But it does mark the moment when I knew this guy was kind, smart, and funny as hell.

I don't want to lose you in this swirl of time traveling tale-telling.  Fast forward to... September 10, 2014.  I THINK that was the day.  It was referenced above as the weepy, snotty-nosed visit to Dr. B, after lo, these many years.  I saw him, was in unbelievable pain, so unbelievable that I'm not even going to throw adjectives at it.  He wanted several things.  A biopsy.  He actually went and dragged a dermatologist into the room ("She was wandering around the halls.").  He had, with a straight face, assured me that I did not want him wielding a knife or any pointy instruments. The dermatologist laughed at the both of us and did the standard, "I wouldn't touch that with a 10-foot pole" routine, and made dire threats about what would happen if the skin broke or were breached -- "It will never heal."

Pshaw!

Next he wanted to use a new antibiotic, administered intravenously, but only once a week.  It was the new gorillacillen: Dalvance (dalbavancin).  No matter that it wasn't in my insurance carrier's formulary and that getting it to the nearest infusion center would require calling out the National Guard. Oblivious to the fact that while he was an established Super Hero, the rest of the organization was peopled by mere hard-working humans.  "We'll work out the details.  I am trying to make things as easy as possible on you." Be still my heart!

Finally, he wanted an MRI. I tried to squash that idea, knowing how much orthopedic hardware is buried in my corrupt flesh, but he muttered something about "the radiologists will figure something out." This after everyone and their brother (and their sister) had wanted MRIs for the past 5 years but were denied, every time!

And Lo! (the Angel of the Lord), if his nurse didn't come sprinting out to the very carpeted waiting room, where I was gently waking a dangerously tired and grumpy Fred. "Your MRI is this afternoon!"

She handed us the order as well as the address of the place (far, far away), complete with a map. I don't know if I blogged about the rest of the day -- it had the makings of concretizing any loose PTSD symptoms Fred and I had managed to scrape off our souls.  The directions turned out to be to a Dental Urgent Care facility, located in the boondocks of a half-occupied strip mall.  A missed photographic opportunity, for sure, was the look on the ultra-plucked, hyper-blushed "fresh" country face of the 19 year old dental receptionist's face.

Me, red-eyed and sweaty, with a leg that looked like Mt. Vesuvius about to make history:  I'm guessing that you guys don't do MRIs here.

Bug-eyed receptionist:  No, ma'am.

There followed the saga of how phones don't help ya much when your call swirls at 28 mph in the perpetual vortex of "Customer Service Representatives are busy helping other customers.  Please continue to hold. Your call is very important to us.  For faster service, try logging on to KP.org!"

Have I been less than kind lately when speaking of Dear Fred?  Yes, I have, even if only in my very cranky, confused brain.  The man told me, not terribly politely, to "shut up, just shut up," and grabbed the sheath of helpful paperwork out of my right claw.  We were, of course, late now for the bleeping MRI.

Fred managed to do the following:  figure out where the nurse had intended to send us; close his eyes and retrace our meandering path to the strip mall, and (after opening those beautiful eyes again) drove us to a neutral point on the map now in his head.  And then, gasp!  He stopped and asked one of the indigenous  population where "X bleeping road might be." He was given landmarks, the only one which either of us remembered being a "Waffle House."

Yes, of course, we got there.  I forked over a $350 co-pay, and the lady said I was lucky because some poor soul had coded in the MRI suite and "they're still working on him, so they're behind anyway!" Hooray!

Anyway, we got it done, but the rest of the week was difficult due to my leg not appreciating hours on the road, and so on, and such froth.  The new antibiotic was all set up for Friday, then cancelled Friday morning.  I ended up in the ER/ED again, admitted again, and Plan C, D, or E was implemented.  Got a PICC line inserted and was started on Daptomycin.  Home nursing was set up.

Doctor Brachman went on vacation that Thursday, bless his bones.  Several nurses suggested that he might be autistic.  At my protestations, they'd say, "O! You like him.  Well, he's very talented at what he does.  People say he's a genius." Wily, crafty nurses.

Things began to go swimmingly.  The next four days saw slow improvement, and Fred easily fell back into the PICC line routine, and with good humor.  I was able to briefly stop observing my own navel lint, and consider the lives of people I love.  Somewhere in the middle of all that, Brayden died, Ethan was suddenly on hospice, Kate McRae suffered her third brain cancer relapse, my Lumpy Brother began radiation (complete with his own stories of clusterf*cks), my Amazing Stepsister continued to amaze in her care of our declining stepmom.  Even the stepmom amazed, as she unveiled the "dark side" of her personality, yelling at sweet Lumpkins, "Why aren't you here helping me?" That must have felt like (yet another) punch in the stomach for sweet Grader Boob. Anyway, I caught up on almost everyone's misery, finding strength in these beautiful people suffering so much more that I ever had or will.  They were still laughing through the tears, and I was tired of being snot-faced, so I did some cosmic chuckling.

Then we hit the next Wednesday.  You probably won't believe this.  We had an 8 am appointment with the Pain Management folks, a good thing as I had pain in need of management!  We also had found -- on the revered KP.org website -- and printed out the directions to this fifth new facility. Fred read them over, I double checked addresses, it looked easy as a deep dish cherry pie.

They were woefully wrong. Particularly the direction which had us turn left off the interstate exit, when the facility was about a half mile... to the right.  Easily a dozen roads bore the same moniker but swapped designations -- road, street, circle, parkway, lane, path-to-hell.  Fred didn't yell or snap quite so much, having witnessed my careful preparations up in the Computer Turret -- and getting up to the Turret in my condition was no easy feet.  Feat.

Again, the indigenous peoples of Jonesboro rose to the occasion, and our sanity-saving landmark this time was a "Steak and Ale."

I know!  I did not think there were any Steak and Ales left in existence, not that I'd ever frequented one.  Before Fred, and even ten years into Fred Time, I was a vegetarian.  If I had more red blood cells, I'd be going back to it.

So we got there... my leg now throbbing and growing, CRPS going nuts from more car stress.  Ruby the Honda CRV is a true babe, but when Fred is in NASCAR mode, she's not the smoothest babe on the road.

They refused to see me.  I begged, finally, waving about the KP.org directions, squealing nonsense about how "It wasn't our fault... y'all fucked us again!"  That got me a short visit with the local Nurse Ratchet.  She actually looked at the directions, shook her head, disappeared for 10 minutes, during which time a humming, blank-faced Fred went in search of coffee but only found grape-flavored vitamin water -- and then she returned and said, gruffly:  "Okay, she'll see you."

There's more, but I want to get to the following Monday, somehow.  The rest of Wednesday the 17th we shall cover with the gauzy curtain of faulty memory.  Thursday, Friday, and most of Saturday were lost to me -- big ass fatigue and a CRPS tantrum, fever, the right hand a lost claw. The last half of Saturday, I perked up.  For some reason, the infection in my leg seemed to be localizing again, kind of going back to its original look of a lone volcano in the middle of the top of my red and purple foot.  By Monday morning, I was pretty sure the thang was gonna blow.  "Good thing," thought I, "that Super Home Health Nurse Cindy is scheduled to come change my PICC dressing and draw labs. She can tell me if it's gonna blow -- and what the heck to do if it does!"

Poor Fred had been up all night, hitting the hay at sunrise.  So I decided to get up and toodle around the Manor, doing very small tasks and tending to very small animals (the Captain's husbandry interests in miniature species shows no sign of flagging... and then, of course, there are the three cats).  I let up whenever the volcano rumbled, but needed to be up to let down the drawbridge and pry open the mock and heavy Florence Baptistery doors to let the good nurse in.

Cindy is the first health care worker I've ever felt comfortable with in my home (Hey, we may be squatters, but we love Tête de Hergé and the Haddock ancestral testament to wild imperial-and-material-ism!).

And she was about to put on a show of ingenuity.

As I finally sidled up to the fanschy-panschy hospital bed in my Road Warrior wheelchair, and finally maneuvered mine arse onto its thin mattress, my piece o'shit right leg gently knocked the laptop precariously perched on the leg of the bedside table.  I watched, in what seemed like slomo, as it tipped gently onto the top of that piece o'shit foot, the high point of which, Mount Vesuvius, appeared to be its desired end point.

Yelling, yelling, whining, etcetera. Nurse Cindy rescues foot, only to find red thick and very pussy lava flowing underneath the electronics.  As if of one mind, we both said:

"We need to get a culture sample of that!"

Nurse Cindy became Nurse MacGyver.  She helped me haul the rest of me into bed, then sprinted to her car, and around the vast Marlinspike Hall in search of sterile implements.  In the end, with sterile gauze, she sucked up some of the "sample," placed it in a sterile vacutainer, and wrapped the whole kit-and-caboodle inside a sterile glove, then raced off to deliver it to a lab.

(The lab refused it.)
(But Nurse Cindy of Coram showed her worth that day!)

She also showed us how Fred now needed to, in as highly "clean," if not "sterile" conditions, change the bandage on the still-leaking foot, 3 times a day.  The first time he did it, I tried not to scream at Poor Fred as he donned gloves, removed the nasty, bloody wrappings, then SCRATCHED HIS NOSE.  In a well-modulated voice, I reiterated the instructions about what his hands were supposed to touch, and not touch, mostly for his sweet protection.  All I got was a "Did I really scratch my nose? I don't think so." Then he scratched his ear.

Fast forward to Wednesday, fast becoming my day of woe. September 24, 2014.  The day that went off without a hitch!  We knew where our appointment was, there was little traffic, we were even early!  And then I met the funny and smart PA Ava Cooper, the woman who plopped on the floor just to gaze at the sole of my foot.

I failed to mention that, thanks to Nurse Cindy MacGyver's instructions on wet bandaging, we had kept the volcano flowing... so that PA Ava Cooper could take a culture sample using the boring old typical tools of her trade! She acknowledged that the foot and lower leg were once again crappy looking (I forget the medical terms).  Another week of intravenous Dapto was ordered.  And we were back at the drawbridge a mere hour-and-a-half after departure.

The other thing I failed to mention was that late yesterday, a message came to me that there was a test result.  We weren't exactly expecting anything to grow, given the Dapto and all, but damned if something did not show itself:  serratia marcescens, or as I like to call it, "S. Macarena." It's been labelled a "secondary" infection, and so, in secondary fashion, a second antibiotic has been added. Blame is assigned to immunosuppression.

The new antibiotic makes me fart.

There are worse things, and these productions are near odorless, although annoying.  Dobby, for one, is not amused. Buddy and Marmy look alarmed, gaze about, sniff, and then go back to sleep.

I'm very vague now, depressed over my hand, though I snagged an appointment for October 7 for an OT "treat and evaluate, make new splint" session.  I also gave up on the arseholes in Neurology, the Doctors Huddleston and Wilensky, and am going to give Dr. Cole a shot at not hurting, and possibly, helping me.  Though I think it's too late for this hand.  But maybe she can take on the new neck jerks, head jerks, visual anomalies, and the everlovin' leg conniption fits from CRPS.  Pain is, as the kids say, ridiculous.

There's also so much going on in our world, on this Earth, that has me fascinated, terrified, and full of crazed opinions.  I want to blog about Syria, Saudi Arabia, Iran, Iraq, Israel, Algeria, France, the U.K. (and Scotland!), not to mention all the home grown idiocy this republic is producing, the degradation of politics, the apparent impossibility of holding office and holding on to one's ethics at the same time... I also want to make some kickass cat videos.

And I want to comfort Maranda, but cannot, don't know her well enough, don't speak the same language, no way I could!

But I can leave you with this recent photo of Ethan Hallmark, a remarkable cancer patient, and its young victim, but also a cool and ordinary kid.  As the fog dissipates, smiles and damp eyes gather in the wake.  You can read Ethan's story, as faithfully recorded by his Mom, at CaringBridge, HERE




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Maranda loving on Brayden... and vice-versa!




© 2013 L. Ryan