Thursday, April 17, 2014

Phoenix, Merlyn, Patriarchs and Colonels

This weekend, I am finishing the fifth Harry Potter novel -- The Order of the Phoenix -- and I think I'll shed a few tears over The Book of Merlyn.

But mostly, I'm going to be leafing through One Hundred Years of Solitude, Love in the Time of Cholera, The Autumn of the Patriarch, No One Writes to the Colonel... 

and other stories.

I've always been more sure of Gabriel García Márquez than of magic realism.

Monday, April 7, 2014

as i crawl beneath the rug, and retune my piano...

I've been avoiding you, Dear Reader.  That's something of a compliment, as the avoidance is based on my assessment of your acumen.

It is no secret, my modus operandi in writing most blog posts.  There are a few topics whose past treatment requires continued treatment:

  • CRPS breakthroughs
  • CRPS in daily life (including humorous leitmotifs about do-it-yourself amputation and the joy of suicide) 
  • Any findings in the case of lost child Lindsey Baum 
  • The reliable turdification of José Ochoa (lately, I've investigated the immense amount of money wasted on him by government grants, but gastrointestinal responses have precluded publication of this research) 
  • The scam CRPS / neuropathy treatment CALMARE / ScramblerTherapy (again, I've a half-written post on the hilarious background of its inventor and his woo-science, dedicated to the creation of a machine that spews electricity like a Fountain of Youth -- never mind the obvious idiocy of mixing water and electricity) 
  • Oh, and should my nausea subside, I am overdue in checking in on where the good Dr. Scott Reuben is malpracticing, and in what way

For a bit, I would regularly rag on Phil McGraw and some of his weirder acolytes, and while that was a gratifying release for simmering undercurrents of sadism, I'm trying to stop feeding that easy-peasy awful part of myself.  Now I just follow their shenanigans when late night efforts at mindfulness and distraction via YouTube cat videos fail.  Besides, one day my vision cleared, and I discovered my gratitude for the Unweird friends made while cavorting with McGraw's Chronic Pain Support Group.

By the way, Dear Reader, you've no need to feign shock at my admission of sadism.  On a good day, it makes me something of a Juvenalian satirist.  On a bad day, okay, I get a slight titillation from asshats getting their due... but not to the extent of paraphilia, or a personality disorder. Ignorance drives me batty and I am daily thankful for my innate, unfailing superiority.

It's also no secret that my navel-gazing can get in the way of what might be decently mediocre pseudo-journalism.  I write more about suffering due to CRPS, osteomyelitis, lupus, and osteonecrosis -- all hilariously related -- than I do my ardent political leanings, or other areas of ardor.  Do I wish my knees were worn from kneeling at some other altar than that of the personal?  Oh, yes!

Referring to your acumen, again, Dear Reader, it's clear that this blog is an attempt at therapy, written in as lively a way as I can pull off so that no one will wander the side halls of detritus.  I am writing my way through the remains of a life, deeply sorry for having wasted it so, and therefore frequently embarrassed by my strung together words, the over-estimation of serendipitous thought caressing circumstance.

There are circumstantial caresses that became blessings -- some fleeting benedictions, some amazingly enduring beatific guffaws. People I've met online, mostly.  Writings I'd never thought to have read had not some virtual friend made of them succulent, enticing fare.

One of those blessings is my friend "Peaches," an actual author, a man of the world, familiar enough with life to inflict suggestions as if it were his prerogative (by virtue of being so old, I tell him.. or dream of telling him, one day... one sadistic, wonderrful day!).

Yes, that's right.  I want to meet Peaches.  As much as I want to meet TW, Carol, Diana, Joyce, Benita, Tom, Betty, Fresca, T, and even some who have wished me ill, but in an inspirational way.

Peaches calls me Irene.  I call him "Peaches" because of a phrase that someone stuck into mine head years ago, in a late afternoon patio conversation at a Telegraph Avenue trattoria.  My memory is muddled, but I believe we trampled over Shakespeare and T. S. Eliot before someone declared someone else, glass raised, "a prince, a peach, a pear."

Since that chilly afternoon, spent over perfect antipasto and ignored obligations, I've found no higher praise to offer other beings than that they were "a prince, a peach, a pear." Roasted peppers and marinated artichoke hearts, spiced meats and bursting tomatoes, there was neither peach nor pear in the offing on our rickety cast iron table, rocking the red wine.  So the phrase is of even more value, its provenance being so wondrously lost.  Sadly, it casts its own restrictions -- I never use it to praise, or shower with abundant love, women deserving such approbation.  It has become a sort of obscure pillow talk, the pillow partners more in tune with its vast smooch galore than with its elusive ancestry or culinary provenance.  The role of the house red, delivered in a series of carafes, probably merits further investigation.

I remember the walk home, to a brand new private apartment on one of Oakland's first streets to cross Telegraph, leaving behind Sather Gate, crossing Bancroft and the cafés, book stores, tables of dangling earrings, poseurs, beggars, travelling to home, paper trash swirling, our awareness of danger waking, coffee our first plan before grading.  Funny, but the guy walking with me never was candidate for prince, or peach, or pear.  A good writer and sometimes great poet, he was a fraud, and the essence of the laudatory phrase lies in the genuine.

So.
Right.
Ahem.

Peaches lives in New York City, the old fart.  He is a faithful friend, but that means, of course, frustration at my "here today, gone tomorrow" nature, a nature unaltered even by friendship or blood relation.  I've been under the radar, or, believe it or not, quite concise, these past few weeks.  Still, Peaches fires off an email every few days.

Like today:

Irene...........
Hi.............

In the dark here.... How're you doing?

P.
Bless his heart, Peaches reached out at a moment when I was navel-gazing, seriously lost, seeing no way out from neurological jokes and jerks, pain bad enough to create tears in a body seriously dehydrated from constant fever.  He just wanted an answer.  I wanted a rescue buoy, garrish orange against the cresting teal.

beware, peaches, i've been avoiding writing anyone.  why?  the proof is in my outdated packets of yeast, my bread that will not rise.  i am in a baguette phase.  i'm also heavily medicated at the moment, which means you should stop reading NOW, content to know that i remain irene. i've been promoted from 100 mcg of fentanyl to 150 mcg patches. the joke is that the pain is stronger but there's just no point in making that known.

but, to answer your concision explicitly:

hey, i am DOIN'.  i am DOIN' (that's southern) the best i can.  

very briefly, last week, fred and i concluded that it was up to each of us whether our respective day would be good or bad.  we crowed and strutted, convinced that no circumstance has the power to inflict a "bad" day.  harrumph -- we don't even know what a bad day IS. complain?  whimper?  moan or groan?  ha!  not us!

that lasted three days and then we took a break.

i'm fine, peaches.  frustrated, sad, guilty, tired -- all of which i shall put aside once the fredster rises from his eight layers of covers to take on the day.  yes, fred is a layer fanatic, something he said he learned about in both brooklyn winters and in the huge temperature variations of the ethiopian desert.

well, there is one thing that sucks.  my eyes are going bad again!  and not in any polite subtle way, either.  i had a brief period of being able to read again and was enjoying the literary send off into sleep, no matter how tedious the novel. we are both working our way through minette walters, a very hit and miss affair. i find her interesting when she lets her inner sociologist sing. when she aims at popular success, she's tedious.
                  
being able to read also meant a complementary tub of plain lowfat yogurt with frozen strawberries. it's become impossible for me to read well without the creamy tang of yogurt and the icy comfort of frozen fruit.

when reading goes, it's a musical bedtime, the lullaby a string of rolling stones' songs -- or, these days, the decemberists and early, easy-breezy, very cheesy brett dennen.  

last night was kind of wonderful, drifting off to phil ochs' "the party," which actually made me think of you... and a few other upper crust sorts, and the cocktail parties you must have both enjoyed and endured.

there's a funny aspect to last night's nocturne, the evocation of monastic hours --  in a completely messed up, annoying way -- beyond the cheapo-cheapo piano, designed to set the teeth on edge.  and then there's phil's voice.  hmm, best i move on, eh? 

some time ago, in asking around about phil ochs' "the party," one of my american lit professors recommended i read... tom wolfe's radical chic & mau-mauing the flak catchers.  

unlike my literati betters -- and that means everyone around me -- i suffered mental origami, a conflation of tom and thomas.  flashes of "golden moments," and so, i have to ask, have you read much tom wolfe?  i realize that the scales tip in favor of look-homeward-ish-ness than anything by the journalist author, who saw himself as a brutally honest zola.  and how many occasions have you had to smile politely at some idjit such as myself, mixing wolfe & wolfe, a heathen playing at americana?

so much happens so quickly in the brain, even a brain seeking sleep.

see? i'm DOIN'.  and while i admire concision, i live for word play... 

"And my shoulders had to shrug
As I crawled beneath the rug and retuned my piano..."

all my best to you and yours, and apologies for ruminating all over your email. it should blot up easily with a paper towel. my last sentence ought to be the first:  how are YOU (and yours), sweet peaches?  

irene

(One hint to how the piano was made even more schmaltzy?  it was a series of plastic toy pianos...)

The Party

The fire-breathing rebels arrive at the party early
Their khaki coats are hung in the closet near the fur
Asking handouts from the ladies, while they criticize the Lords
Boasting of the murder of the very hands that pour
And the victims learn to giggle, for at least they are not bored

And my shoulders had to shrug
As I crawled beneath the rug and retuned my piano

The hostess is enormous, she fills the room with perfume
She meets the guests and smothers them with greetings.
And she asks, "How are you" and she offers them a drink
The countess of the social grace, who never seems to blink
And she promises to talk to you if you promise not to think

And my shoulders had to shrug
As I crawled beneath the rug and retuned my piano

The beauty of the hour is blazing in the present
She surrounds herself with those who would surrender
Floating in her flattery, she's a trophy-prize, caressed
Protected by a pretty face, sometimes cursed, sometimes blessed
And she's staring down their desires
While they're staring down her dress

And my shoulders had to shrug
As I crawled beneath the rug and retuned my piano

The egos shine like light bulbs, so bright you cannot see them
Blind each other blinder than a sandbox
All the fury of an argument, holding back their yawns
A challenge shakes the chandeliers, the selfish swords are drawn
To the loser go the hangups, to the victor go the hangers on

And my shoulders had to shrug
As I crawled beneath the rug and retuned my piano

They travel to the table, the host is served for supper
And they pass each other down for salt and pepper
And the conversation sparkles as their wits are dipped in wine
Dinosaurs on a diet, on each other they will dine
Then they pick their teeth and they squelch a belch saying
"Darling, you tasted divine"

And my shoulders had to shrug
As I crawled beneath the rug and retuned my piano

The wallflower is waiting, she hides behind composure, composure
She'd love to dance and prays that no one asks her
Then she steals a glance at lovers while her fingers tease her hair
And she marvels at the confidence of those who hide their fears
Then her eyes are closed as she rides away with a foreign legionnaire

And my shoulders had to shrug
As I crawled beneath the rug and retuned my piano

Romeo is reeling, counting notches on his thighbone
Searching for one hundred and eleven
And he's charming as a child as he leads you to his web
Seducing queens and gypsy girls in the boudoir of his head
Then he wraps himself with a tablecloth and pretends he is a bed

And my shoulders had to shrug
As I crawled beneath the rug and retuned my piano

Oh, the party must be over, even the losers are leaving
But just one doubt is nagging at my caustic mind
So I snuck up close behind me and I gave myself a kiss
And I led myself to the mirror to expose what I had missed
There I saw a laughing maniac who was writing songs like this

And my shoulders had to shrug
As I crawled beneath the rug and retuned my piano

-- Phil Ochs

Friday, April 4, 2014

Skull not that of missing Lindsey Baum







Mystery skull found in Washington state crab pot yields few clues
Published April 03, 2014
Associated Press
Authorities say a human skull found in a crab pot off the Washington coast belongs to a female, but it doesn't match anyone in a national DNA database.
The Grays Harbor County Sheriff's Office says the skull found off Westport was sent to the FBI crime lab in Quantico, Va., and run through the Combined DNA Index System. No matches were found.
KXRO-AM reports the DNA profile did indicate the skull is from a female, and her age is unknown.
The Sheriff's Office says the results show the skull does not belong to Lindsey Baum, a 10-year-old girl who disappeared in June 2009. She was last seen leaving a friend's house in McCleary, about 50 miles from Westport.
A fisherman found the skull Feb. 21 in a crab pot about 2 miles off Westport in water about 100 feet deep.

Noblesse Oblige









One of the Noble Professions?  It doesn't feel that way.  Now it's more of an accusation.  I was just reviewing some of the fond recollections left at an online review site for some English prof to whom I am happily related, and came across an oldie but a goodie:

complete and total dick. thinks english is the most important thing in the world, and like most professors, has his own take on what is good. It will take you the first two C papers to figure out his style and he will fail you on the last paper for over-doing it.

That's okay.  I'm sure such reviews hold no sting for Brother-Unit Grader Boob, particularly given that professing is most ennobled by poverty wages and enriched by a systemic dearth of benefits.

Then, too, there are always the Warm Fuzzies arising from student appreciation.

Grader Boob is a great teacher, funny, caring, and with high expectations.  But, yeah, it's true:  He does have his own take on what is good. Like most professors.

Anja Niedringhaus: "...I should never take war as normal"

Anja Niedringhaus
October 12, 1965 -  April 4, 2014



[C]an you offer an insight into your motivation to continue to cover conflicts?

"It's difficult to answer the question of my motivation to keep covering conflicts. Maybe it is because I learned early in my career about how to cover conflict, I am not sure. But when I decided to go to Yugoslavia to cover that war on Europe's doorstep, I had the feeling that there is nothing more important in life to cover. I think for me to be a true journalist means to cover conflicts because sadly, in the last 20 years, there has not been a single year that I have not seen a conflict.

"But the world is not only about wars and conflict. Life has to have balance as does my work. I try very hard to keep that balance in my work. I cover also sports and political events and papal trips.

"That balance keeps me sane and reminds me that I should never take war as normal. So even today after witnessing so much war, I still arrive at a conflict filled with wonder at how this can happen and feel for the people and the soldiers caught up in the conflict. I see how their lives have been turned upside down by war.

"The day I enter a war zone and think it is normal is the day I will stop covering wars."



A U.S. Marine dog handler attends to his his Improvised Detection Dog, after he was injured and rescued by a helicopter of the U.S. Army Task Force Lift "Dust Off", Charlie Company 1-214 Aviation Regiment, in Helmand Province, on June 3, 2011.



A US Marine on his way to pick up food supplies after they were dropped off by small parachutes from a plane outside Forward Operating Base Edi in the Helmand Province of southern Afghanistan, on June 9, 2011. The smoke in the background comes from burning parachutes the Marines destroyed after they reached the ground.




Sarajevo:  "People tried to carry on as usual..." 1990

The War Children, 11 September 2010, Afghanistan


Injured U.S. Marine Cpl. Burness Britt, after being lifted onto a medevac helicopter, on June 4, 2011. Britt was wounded in an IED strike, a large piece of shrapnel cutting into a major artery on his neck.



Bali, Indonesia, 25 November 2013

Thursday, April 3, 2014

On the Bow

It may shock you to learn that no one but you, yourself, is responsible for your well-being.  There are sweet people who, by virtue of their job description or their innate goodness, will attempt to be of assistance and cheer, but it's not possible for them to make things right for you.

If you are going to insist on despair as your legacy, at least have pity on these kind folk, though they rarely need protection from us narcissistic idiots, having learned the secret of personal responsibility in utero or at the knee of a benevolent adult.

Turns out that my gracious Go-To-Guy, concierge physician to the stars, is under the weather, so our appointment is off.  Feel better Go-To-Guy!  However, being an orderly sort, I'd also arranged a needed visit to the pharmacy down the road from his office, his office being many, many miles away from Marlinspike Hall.  So the trip cannot be avoided.  This was enough to bring on tears and declarations about how I simply cannot bear the pain.

Then Buddy required a wheelchair lift to the kitchen -- he simply could not get there on his own. Necessary to the voyage was his stance on my lap, butt firmly fixed against my chest, chin raised against the sea breeze, his pose as close to Kate Winslet on the Titanic's bow.  I suppose, though, that Buddy'd prefer I say it better approximated the moment of Dicaprio's declamation: "King of the World."




Once shrimpy kibble had been served the Feline Triumvirate, once Buddy was convinced there was no available human food hid in my pocket, coffee was set to steep and my fine wardrobe transferred from the washer to the workhorse dryer.  Madame Marmy flaunted her fluffy butt, her wayward tail drifting into Buddy's food bowl now and then.  Dobby eyed the progress of the coffee, and precisely at the time of its distribution into mugs and such, he scurried to my hospital bed, as The Law clearly states "[t]here shall be no consumption of hot coffee, topped with a slight milky froth, until such time as The Runt, commonly known as 'Dobby,' has been brushed and in receipt of an ardent belly rub, as well as a tender cleaning from his eyes of that material called 'gunk.'"

In the precious conversational period book-ended by coffee intake, Fred and I did a quick gloss of the well-being concept with which I opened this post.  We even covered guilt, depression, and pharmaceuticals.  In dire need of a shower, I made public confession of my inability to take one. Moving right along, however, we did manage to agree that when he commenced his own shower, I would hobble to the half-bath and do a magnificent wash up at the sink, while seated on the toilet.
In sparkling synchronicity, we will emerge, like Venus on the half shell, cresting the waning waves as one, and hop into Ruby the Honda CRV and set out to do what needs to be done, impervious to the Human Condition.

We have two pharmacies to visit.  One for my drugs, and one that has prepared a compounding version of medicine for Marmy Fluffy Butt, who has a terrible case of the feline version of Crohn's disease.  We are having the medicine put in liquid form and chose a nice fishy taste to mask the terrible flavor of the drug.

The vet, the wonderful Dr. George, whose last name only an intrepid few attempt, gifted our girl with a Tranquility Collar.  She seems proud of it, its royal nature declared in purple hues, and displays it proudly, although with no signs -- yet -- of the promised tranquility.  She still believes Fred has betrayed her, allowing unspeakable examinations of her private regions, forcing foul-tasting goo down her throat.  She clings to me, and glares at him.

We hope that she will be fine, and soon.

Have a good day.







© 2013 L. Ryan

Wednesday, April 2, 2014

Go-To-Guy Meets Obamacare

CLPS:
Crumpsall Lane Primary School



CRPS:
NOT a primary school in Manchester, Great Britain

Some people think I'm mad for retaining the services of a "concierge" physician when I've successfully run the marathon of applying for coverage through the HealthCare.gov Marketplace, set up by that wonderful bit of legislation known as the Affordable Care Act.

Okay, "Obamacare." Jeez.  A girl tries to deflate the negative connotations of a term by providing and modeling alternative linguistic monikers and is shouted down by her imaginary millions of Dear Readers.

Yes, I've adequate and affordable coverage now, and desperately needed it.  But nothing has changed, really.  Even when I had wonderful but not so affordable coverage under the ACA's early version of Obamacare -- the PCIP (Pre-Existing Conditions Insurance Program) -- that began back in 2010 and saved my miserable self, I was considered mad for retaining the services of my Go-To-Guy and his flat fee service, then under the aegis of MDVIP.  He's no longer with them, he and his partner.  They're Wild Medicos.  They've gone rogue.  They're MDVIP without the corporation around their neck.

Go-To-Guy saw me through several valleys of death, always opining, in his crisp dark suits, understated cologne, funky eyewear, and with all of the surety of a hardheaded grandmother: "This, too, shall pass." When I had no insurance, he kept me on, and kept me OUT of the hospital. Why was I uninsured, being a bona fide State Employee 'n all?  Because my Bizarro World version of BCBS decided it was fair to charge me $1513 a month as a premium, with a deductible over $5,000.  So while it wasn't a game, it might have been a sporting challenge for myself and Go-To-Guy, as he kept dozens of balls in the air, and never let one fall to the ground, not even once. I became dirt poor, got sicker, but did not die, mostly out of a desire to see my staid and superb doctor kick major butt. Undoubtedly a conservative sort, he hooted and hollered and did backflips when Obamacare was passed, because then I could finally get the surgeries I needed, and the medications that he preferred, instead of the ones that Walmart sold for $4.

It was fun introducing him to the real world.  "Really?  You've got to be kidding!" became the standard iterative upon which all of our problem-solving conversations were built.  I doubt he's ever been in a Walmart.

The real Go-To-Guy is a compassionate, insightful, incredibly well-informed physician who decided that he wanted to return to the art of medicine as well as perfecting his scientific approaches to care. He was tired of dealing with insurance companies and rushing through patient visits -- though, having been with him a good decade before he changed his practice model, I can attest to never once having felt that he was timing the visit or needed to be anywhere but where he was. That's not to say he hasn't had his moments of rapidly rising color from chin to brow, complete with beads of sweat, and a cramping hand grip -- moments when I'd touched some nerve or other.

Go-To-Guy believes in the best of people.  He's shocked by any anecdote that relays an example of less than outstanding human behavior.  He's cute that way and I figure that attribute to be an excellent counterweight to my inbred pessimism.

And yes, there's that business of him saving my life a few times, and there's that aspect of acute intuition bolstered by being up-to-date and actually listening to this whiny, bitchy patient with the weird cluster of diseases.  Truth be told, however, the next time he is going over labs or a radiology report, muttering to himself, and I hear... "That doesn't make any sense... but this is Retired Educator, so who knows?" -- I'm going to bop him on his pate.  Well, as my reach is shortening and my strength waning, I probably could only whack one of his bony knees.

But... with the improvements being made in the field of assistive devices, add a flowery cane or a rubber-tipped grabber, and I could infict serious damage almost anywhere on his lanky body.

Right.
So.

I see Go-To-Guy this week for the first time since January.  We maintain an email correspondence, mostly consisting of Q-and-A sessions and my need to vent.  This meeting will be our first when, technically, I have another physician serving as "primary care provider."  And so, I imagine we will still do a soft shoe rendition of quizzing and catch-up, medication reviews, but now he won't be able to order labs or imaging, or write for meds.

What shall I call my new Primary Care Provider, a young, inexperienced, very pregnant, well-intentioned and woefully-unprepared physician in her second year of practice?  Go-To-Guy and I had gleefully thought to outsmart my new ACA Market Place HMO by slipping the list of available providers to his partner's wife, who works as a hospitalist for the same HMO.  We giggled and called her our "mole." The mole eliminated my new Primary Care Provider straightaway, first thing, with nary a hint of hesitation.  Next to my new Primary Care Provider's name, she wrote, in caps, "NO." Then Our Mole underlined her capped "NO."

NO.  Okay. I bolded it and turned it red.

Mole-guided, I picked the guy with sterling credentials, 15 years experience, row upon row of accolades, and the highest approval of the hospitalists with whom he worked.  I made the appointment and the acid levels in my stomach decreased.

And so, of course, at my first "Meet and Greet" appointment with this fine doctor we chose, talented physician dude announced that, unfortunately, his patient load was already too large, and so, like a snake, he transferred me to the medico who had been branded with the capitalized, underlined negatory.  I must have looked like a large-mouthed bass hungry for oxygen as my lips flapped in the overheated exam room.  He did slip in, the sly devil, that she was scheduled to go on maternity leave in May, and that he would probably pick up my care during that time.

Why insist on choosing that facility?  Why there?  I dunno, really. It's brand new and everyone is super nice, super efficient, super interested in customer service evaluations.  There are onsite lab, radiology and pharmacy services.  The truth? I had visions of needing to flee, and hoofing it over to the safety of Go-To-Guy's office, one street over, and the adjacent two hospitals, in case I needed urgent care. Perhaps, too, a compulsion to talk politics might come over me and there's no one better than Go-To-Guy's gatekeeper nurse, Justine, for potty-mouthed dissing of right wing extremist asshats.

Having now had my second "Meet and Greet," I think I will call my new PCP "The 17-Minute Uh-Huh."  This commemorates our first encounter, spent ordering most of my medications, during which "uh-huh, uh-huh" was the response to each medication I pronounced aloud.  Well, actually, the "uh-huh, uh-huh" began to arrive mid-drug name after the first three prescriptions.  I was getting peeved, but then a strobing pink light induced seizure activity as she interrupted a response with: "Our 17 minutes are up!"

The 17-Minute Uh-Huh has many redeeming qualities.  She's cautious.  She can explain the parts of the ear in great detail (I am having that benign kind of vertigo that comes on whenever I turn my head to the right!  "So don't turn your head to the right!").  This was at our second meeting, brought on by a high temp, a high white count, the aforementioned benign vertigo, and a messed up thyroid assessment that kept stomping its little computerized feet and claiming I had both Hashimoto's hypothyroid AND Grave's disease.  Since everything else defied logic (she's new), The 17-Minute Uh-Huh glommed onto ear physiology.

But I will have a hard time getting over her blank look upon hearing "CRPS," and the aha-moment when I offered up the acronym "RSD," instead.  The trigger of a vague memory brought on the explicitly memorable: "Oh, yes!  Something Sympathetic Something!"

Go-To-Guy has this annoying habit of pulling out some electronic device and looking up things he does not know, or to verify information.  He's particular. And he loves learning. He has other habits I've noted through the years, like the first time he saw me after I "developed" CRPS.  Actually kneeling on the floor, he was carefully examining my right foot -- at the time, the only visibly afflicted part of my body, and that was only a subtle blue hue and swelling, despite the outrageous pain there and in my left hand and forearm. Well, my left hand had a "claw" formation, but I don't like remembering it, so I'll forget it again now. He asked permission before touching the thing at the end of my leg -- compare that to Jose "The Turd" Ochoa and his reputation for suddenly grabbing at affected limbs; compare that to the countless doctors, nurses, and aides who have poked, grabbed, and stuck needles in that region without warning, much less permission.  There are two nurses and one doctor who learned the lesson well when I kicked them in their respective midsections -- I was semi-conscious and on a respirator at the time, if that absolves me at all of such violence.  It doesn't, of course, but all three were wonderfully forgiving.

See how I run from what needs saying?

At that time, the day Go-To-Guy first saw the purported foot, the orthopedic surgeon responsible for its pitiable condition, was Dr. Eric Ward Carson?  Let's get philosophical and call him the Thick Necked Truth Deflector.  In the beginning, there was a different word, a different descriptive expression, very stylized, ladylike:  Dr. Doo-Doo Head.  He denied, deflected, referred, mumbled, threatened, demeaned... did everything but diagnose and treat the obvious.  It was after weeks of that barrage of crap that I saw dear Go-To-Guy.

Me:  "Dr. Eric Ward Carson says this will go away, it's not a problem, I'm over-reacting, and that there is no such thing as CRPS.  He says that CRPS is a psychological disorder."

[In desperation, I had seen a partner of Dr. Carson's, someone very trustworthy, who had replaced my right hip the year before, and had referred me to Dr. Carson for the left shoulder replacement gone woefully awry.  This partner took one look at my leg and said, "Oh no, you've got RSD..." He then went on to deconstruct the acronym, and introduce its pal, CRPS, writing it all out on the crinkly paper covering the exam table.  I still have the bit of paper.  It was my first clue to what was causing so much pain and... well, you know my tiresome litany.  He urged me to see Dr. Carson as soon as possible and start treatment.  But, as I said above, Dr. Carson's reaction was to deny the evidence before him.]

Go-To-Guy:  "It is very real, it is not in your head, and yes, you have it. I'm so sorry."

Why am I ruminating on this bad stuff today?  The mail.  In one large envelope, I received a copy of the labs and my "current problem list" from The 17-Minute Uh-Huh.  In another large envelope, I received a copy of my records from the neurologist I can no longer see -- the Hawaiian-shirt sporting genius, in shorts and Birkenstocks mid-winter, who made the "official" CRPS diagnosis in 2003, who ranted and raved about the cover-up operation put into play by Saint Joseph's Hospital of Atlanta, Dr. Doo-Doo Head, with the ample and able assistance of Doctors Leslie Kelman and Steven Sween.

This Stylish Neuro-Guy, seeing my confusion (at that point, pure fatigue), had grabbed a big book, what we love to call a tome, dedicated in its entirety to CRPS / RSD, and flipped to the big, bright, colored photographic section... and there I was.  "See!  This could be you!" He even loped out to the waiting room to drag a sleepy Fred into the exam room.  "See!  This could be her!"

No, that's not how it reads in the medical records.  There, I am an "unfortunate woman." There, I am diagnosed clearly with causalgia, not RSD -- or in the modern parlance, with CRPS Type II.  Why does it matter?  Ultimately, it only changes a bad attitude.  Doctors who still resist the diagnosis of "RSD" will sing a different tune if you change the name to "causalgia." And there are those who do the same if you say, "I've CRPS Type 2, not Type 1."  The difference relies on the identification through EMG, or nerve testing, of nerve "lesions" as the cause of the neuropathic pain in the path of that nerve. Stylish Neuro-Guy identified three separate nerve lesions, two in my right leg, and one in my left forearm -- the original sites of injury.

It's not a cause for rejoicing, this shift in designation.  In any event, now I have both Type 1 and Type 2, as the disease spread from left arm to right, and right leg to left.  The facial involvement was God's private joke.  But there were times I might have been able to shut up some Talking Irritant by producing the EMG results.  It never occurred to me to get copies, as the "treatments," or lack thereof, are the same, no matter the type.  Causalgia / Type II is taken more seriously because it has demonstrable proof, and, I guess, because its "outlook" is more dire.

So that's why this is all spinning in my head.

Because here I am again... reinventing the wheel with "Oh, yes!  Something Sympathetic Something!" and referrals to the same orthopedic surgeons who have already tried their damnedest to save my bones, likely infected at the time I "acquired" CRPS.  Oh, to take that moment back.

Here I am, still fighting bill collectors who are calling to grab illegal "balance billing," stuck in a wheelchair and a freaking hospital bed, reliving the diagnosis with each newbie doctor, repeating tests that do not need repeating and that has done nothing but grind, grind, grind in the reality I'd be best served to forget.

My new Primary Care Physician, The 17-Minute Uh-Huh, still has CLPS listed as Number One on my Problem List. I wonder what that stands for?  A quick search turns up:

CLPS Colipase Pancreatic
CLPS Closest Lattice Point Search
CLPS Criminal Law Policy Section (Canada and Australia)
CLPS Calibration Lamp Power Supply
CLPS Common Logic with Power Supplies
CLPS Center for Logic and Philosophy of Science
CLPS Crumpsall Lane Primary School (UK)

I'm going to go with... "Common Logic with Power Supplies." I definitely have huge problems with common logic, and power supplies?  Don't get me started!

So, heck yes, my mocking detractors, I will forego my one Diet Ginger Ale a day, consider halving my coffee intake, eat canned tuna in lieu of fresh tilapia, cut off television service, sell whatever I have left to sell (a food processor, meat grinder, and a snazzy fondue set), to pay for access to Go-To-Guy, my concierge practitioner, who knows to ask permission before touching the thing attached to the purported limb adjacent to my rotting right hip.  He's my back-up, my reassurance.

He's Go-To-Guy.



2013 L. Ryan

Monday, March 31, 2014

Braden Hofen

Hi, Dear Readers --

I'm pulling my head out of... the sand just long enough to ask that you send glorious thoughts, wishes, and prayers of hope into the amazingly blue ether in the name of young Braden Hofen, who is receiving a bone marrow transplant from his brother Zach in just one-half hour.

Short notice, but the universe can handle it.

As can you.

He's one of my four (more or less) CaringBridge kids, and he's an interesting lad.  He's autistic, yet quite social, and a hot shot basketball player.  He's in isolation, as his immune system has been destroyed (on purpose) in preparation for the arrival of Zach's cells at 1:30 EDT.  The chemotherapy and its accompanying woes has not slowed his Nerf swooshes and 3-pointers.

His mom, Deliece, had a cancer journey herself, so she has too good an understanding of how he feels and a well-nourished hatred of the disease.  It is Braden's second cancer, his first having returned, and this current leukemia the gift of a "side effect" of the treatments for the primary disease.  A truly suckifying situation.

Here is Deliece's request.  I've never met her or Braden, but have read enough of her prolific and expressive accounts to know that she'd rejoice over a simple nod to the sky on behalf of Braden and Zach as much as she'd thrill over a formal Mass at the Vatican.

You can follow and catch up on their story at Braden's CaringBridge site.





A request...
1 hour ago
Hi Army,
I will save the explanation of how things are going right now but Zach was AMAZING and Z-Force is rocking it out! The doctors got a good cell dose and Zach is in recovery, smiling! I'm beyond proud of him!

We just heard that the cells are going to be transfused into Braden at 12:30 central, 1:30 EDT. I have a request for you. Would you please take just a moment at the appropriate time in your zone and send Braden and Zach positive thoughts, prayers, hope, whatever your heart leads you to do?

We have made this request a few times in the past when we have had significant events that were going to change the game. This is one of those moments...it's Braden's last chance. These cells MUST engraft...and frankly, engraft quickly to spare him greater complications, they MUST kill any remaining cancer cells, and they MUST be vigilant and take out any returning cells that may appear. Braden's organs must be protected for the rest of transplant.

That is what we need and we need the Army to hope for us now. Each time we have done this at a collective time, we have been able to literally feel your arms around us holding us up. You are our Aaron and Hur.

Together, we can do this. I completely believe the army is one of the major reasons Braden is here to fight this battle. Your hope, you believing in him...and now Zach, your prayers MAKE A DIFFERENCE!

Please share with others and ask them to do the same. There is no such thing as too much HOPE!

Thank you everyone!

LET'S GO Z-FORCE!!!

cANCER...you are going DOWN!  

TAKE THAT! 

Tuesday, March 25, 2014

For Dobby (Again)

a repost from last summer. it is never wrong to extol this little guy.  i find him sitting quietly next to me as i do my squirming, spazzing, and screams. he's more helpful than any pharmaceutical; he's pure love, our dobby.


*****   *****   *****

dobby under his brother fuzzbucket's lovingly applied rear naked choke.  dobby is always the wronged one, hence that haunting little star face, pleading for rescue. he remains 90% angel and 10% house elf.





For Dobby

The mucus sac of clammy grey
held you in its strong stone shade,
but who ponders the amniotic tint 
of mirky placenta?

(One is more challenged by its slime than its hue --

except that there was iridescence:
a window in, and a mirror refusing entry,
both; a slick uterine shimmer
repeating reflection's echo
between attraction and repulsion.)

A feral mother's long hairs spun
the moisture of birth into unctuous yarn, 
luxurious snowy strands coated
in melted sanguine maternal mystery,

the all serenaded by mewled complaint
as she gave up on you, the final kitten.
Liquid eyed, she hissed at last, and spat,
glared at us and at life's mess: her first four.

A wriggling membrane, half born, 
flashing nebulae of twirling bright whites,
intimations of very pink punctuation, dotted
outrage, hasty hints of pearlized claws and
anxious padded feet.

He grabbed hold with a ruddy hand muscled with curved strengths 
and gently pulled you from asphyxia, out of oxygen's debt 
and the dark, dank chambers of the queen.

He set the globe of you on my rough teal towel
whose one swift rub broke the holy seal
of the tiny one she'd given up on. 

The stars a forehead, a chest placket. 
The pink whorls a pert nose, perfect ears,
a confusion of paw pads --

but most of you as pearly glaucous 
as the original waxy package.  Tucked 
next a bulging teat, the warmth of dried
and silky siblings, you chose to climb
your mother's head instead --

and perched, drowned rat of a runt,
content, asleep, upon her silken nape, 
blind, cold, and born.

© 2013 L. Ryan

Sunday, March 23, 2014

I just had sex and it felt so good (Felt so good)

I think, now that I am sick of McConnelling, that this is the perfect one.  Of course, what would be perfect, po-li-tic-all-y, involves the Secret Service turning up at my door.  With some sort of award cast in pure gold.  Hefty, really weighty.  Then they could give me a lift to the nearest pawn shop, stand guard while I traded in my voluminous meritorious medal or huge trophy for cold, diminishing cash.  Each Secret Service agent would receive, as is proper, a generous gratuity.  Spread wealth, Friends, spread wealth.

Yes.
Well.
Anyway.

Here's #McConnelling to The Lonely Island's super-crafted tune "I Just Had Sex":

Sometimes somethin' beautiful happens
In this world
You don't know how to express yourself
So you just gotta sing

I just had sex and it felt so good
(Felt so good)
A woman let me put my penis inside of her
I just had sex and I'll never go back
(Never go back)
To the not-having-sex ways of the past

Have you ever had sex? I have, it felt great
It felt so good when I did it with my penis
A girl let me do it, it literally just happened
Havin' sex can make a nice man out the meanest

Never guess where I just came from, I had sex
If I had to describe the feeling, it was the best
When I had the sex, man, my penis felt great
And I called my parents right after I was done

Oh, hey, didn't see you there, guess what I just did?
Had sex undressed, saw her boobies and the rest
Was sure nice of her to let you do that thing
Nice of any girl ever, now sing

I just had sex and it felt so good
(Felt so good)
A woman let me put my penis inside of her
I want to tell the world

To be honest, I'm surprised she even wanted me to do it
Doesn't even really make sense, but, man, screw it
I ain't one to argue with a good thing, she could be my wife
That good? The best thirty seconds of my life

I'm so humbled by a girl's ability to let me do her
'Cause honestly, I'd have sex with a pile of manure
With that in mind, a soft, nice-smellin' girl's better
Plus, she let me wear my chain and my turtle-neck sweater

So this one's dedicated to them girls
That let us flop around on top of them
If you're near or far, whether short or tall
We want to thank you all for letting us fuck you

She kept lookin' at her watch
(Doesn't matter, had sex)
But I cried the whole time
(Doesn't matter, had sex)
I think she might've been a racist
(Doesn't matter, had sex)
She put a bag on my head
(Still counts)

I just had sex and my dreams came true
(Dreams came true)
So if you had sex in the last thirty minutes
Then you're qualified to sing with me

I just had sex
(Everybody sing)
And it felt so good
(We all had sex)
(Felt so good)
A woman let me put my penis inside of her
(I want to tell the world)
I just had sex and I'll never go back
(No, no, no)
To the not-having-sex ways of the past

Songwriters
Bettis, Jerrod / Franks, Justin / Schaffer, Akiva / Samberg, Andrew / Taccone, Jorma




Saturday, March 22, 2014

3 years ago today: Subanesthetic Ketamine Infusion #2

originally published 3/22/2011 -- republished to honor fred


I'm pretty blue, pretty exhausted.  Can't think of a reason why yesterday's treatment should be behind either of those states, but heck... who knows?

They upped the dose to 90 mg and infused it in about 2.5 hours.  It was not pleasant but I apparently did a good job hiding that from Fred.  The nurse somehow knew I wasn't having the time of my life, and gave me a pep talk at discharge about how finding the right dose takes time and then several treatments at that dose, or higher.  Monique, her name was Monique.

Without saying much, she said a lot.  Like how this may be pissing into the wind because I am starting so long after onset.  Nine years.  Nine years.  Nine years of this.

She wouldn't use the port (that's right -- after all we went through to get it in before the second infusion -- the doctor having said he would refuse to treat me if I showed up without one...) because it was so new, the site very... raw.  It's swollen, bruised, and just not healed at the "edges."  I could see Fred eating his outrage before bending to his book.

Instead of sitting by my side, he sat in the wheelchair at the foot of the guerny, so as to stay out of the way of the nurse and tech, who do vital signs frequently -- like every 15 minutes.  He was beautiful to behold, at least in my tripping mind -- standing out against the bleak fluorescence of the hallway, a silhouette I've come to love, a faithfulness I surely do not merit.

I remember crying. My legs spasming, relentless.  The i.v. tubing, the blood pressure cuff, the oxygen monitor --each thing assumed terrible proportions just by tapping against my skin, each tap scathingly painful. I remember thinking that so long as I didn't open my eyes, I'd be fine.  That's probably why Fred thought all was well, thought I was sleeping through it.  Not so.  Not even close.

I asked for my purse there toward the end.  I had wanted to take a clip of the statue in front of the hospital.  Instead, while completely out of my mind on ketamine, I took a video of the ceiling in my cubicle, the curtains surrounding my cubicle, the empty hall near my cubicle, and...

...the most comforting of comforts, perched in the wheelchair there at the end of everything, my sentinel, my guard -- the best argument, the best reason I know for opening the eyes...

video


Next week, an even higher dose.  Then, the following Monday, an assessment and decisions.

"I have saved all my ribbons for thee...."

from My Morning Cup...Refilled




Like a bird on the wire,
Like a drunk in a midnight choir
I have tried in my way to be free.
Like a worm on a hook,
Like a knight from some old fashioned book
I have saved all my ribbons for thee.
If I, if I have been unkind,
I hope that you can just let it go by.
If I, if I have been untrue
I hope you know it was never to you.

Like a baby, stillborn,
Like a beast with his horn
I have torn everyone who reached out for me.
But I swear by this song
And by all that I have done wrong
I will make it all up to thee.
I saw a beggar leaning on his wooden crutch,
He said to me, "You must not ask for so much."
And a pretty woman leaning in her darkened door,
She cried to me, "Hey, why not ask for more?"

Oh like a bird on the wire,
Like a drunk in a midnight choir
I have tried in my way to be free.





"waiting on an angel..."

okay, first of all, i am not fine.  this is perhaps the most pain, and the longest run of spasms/dystonia/cramps/body-jerking-without-benefit-of-work-out-by-love-making i've experienced since the onset of crps, back in may of aught-2.  put a loaded gun within reach and i'd not hesitate to eat the barrel, pull the trigger.

i know, drugs are my best bet.  i already tried that.  not for killing, just for a TKO.  the pain and the spasms/dystonia/cramps/body-jerking-without-benefit-of-work-out-by-love-making broke through, leaving me prone to falling and dropping pills in the bed, on the floor, terrifying me for fear that the animals might eat them.  so i've asked fred to vacuum.  and make coffee with loads of milk.  my stomach is bleeding.

days of mail to read, and i am afraid to read them.  but i looked at the first email in line, it was from the aforementioned fred and consisted of this:



he found a website, a blog, something on the web in the form of a britney with the acronym AFPE, standing for anti-feminist, pro-equality.  standing in front of me and mine tears, he raised britney to the status of that saint / whore mary, a woman of good sense and finely honed hatred of her extremist sisterhood.  oh, the holes in fred's head.

last saturday, i did beaucoup baking and, in that exquisite process, burned the heck out of the side of my index finger on my left hand.  it hurt like holy hell, then stopped.  started up yesterday, and is now turning rapidly from blisters to ulcers.  what kind of burn takes a week to do its ugly business?

oh, for a hole in my head.

so britney's blog is HERE.  i don't much appreciate it, but, as i said, it fills a niche, and one of those niches is fred's antipathy for the extremist militant lesbian feminist existentialists, the alpha-wimmin at his sunday morning go-to-meeting place.

he just brought me coffee with loads of milk.  my stomach is bleeding again.  i forgot to post my POLST paperwork to this damned hospital bed, forgot, too, to put a cheerful DNR sign.  that last bit was a lie.  i think fred might flip out from looking at it.  also, if you ask me to verbally acknowledge the DNR order, my brain makes my mouth say "NPR." i imagine that might cause some confusion.  i'm a fundraiser for "all things considered," unto the end of my days.

i need money.  my relatives in lincolnton are bilking my bio-mother for big bucks every week, and i want, sometimes, to add them to the extra-judicial execution list, but don't.  i need money badly, but hell if i am going to wade through the ari genetic cesspool to take a sick old woman's money.  she needs it more than i do... but the overarching principle is that it is HERS.  they all assume that my stock-market-whiz of a father left me some imaginary fat sum.  he left me nothing, which was the absolutely right thing to do.

i have wasted a life, and every day i remain alive is more waste of air, food, and internet space and time.

don't believe in angels, but decided i do have one.  i loved him with every bit of my heart, soul, body, and mind, when i was between 19 and 24.  my family never met him, and the friends i shared him with are scattered in true randomness.  like my father, his name was bill.  he was beautiful and joyous. i lost him my first year in grad school, told no one.  burned his pictures.  then asked his mom to send me one of him, healthy and happy, and she sent me the beautiful boy framed by sparkling blue waters and a pier.  it was the summer, she said, and he kept up his snow-skiing skills by water skiing bare foot. tan, with drops of water on his face and chest, a wry smile, wet hair still obstinately curly.

i decided to just take my bill h. koptis as my angel, as i have so often dragged him into my sleep, a last measure against pain and being alone, his body a perfect fit to mine.  singing in my ear.







© 2013 L. Ryan