On Rectitude

I pity you, Dear Reader.  The richness of life's tapestry around me calls up this pity, this sadness for you and what must be, by comparison, a bland and monochromatic existence.

You poor thing.

When you look out your bedroom window, you aren't gifted with the best-crack-dealer-on-the-block's cheery wave.  You don't know that the color of the day is green.

Just yesterday, it was red.  Our dealer sported red trainers, baggy jean britches -- with the fabric crotch a mere two inches superior to his knobby knees -- patched with scarlet pockets, and topped off the ensemble with one very backward baseball cap, cardinal brimmed.  His t-shirt was high tech, some sort of wicking material, and sternly black, the better to make the red shine.

The kelly green for the day does not quite work.  It's neither editorial nor a suitable fashion irony.  Let us hope his dope makes up for his design deficit.  He was working the phone, as usual, when he looked up to give me the highest five.

Back to your pitiful state, Reader Darling.  You were not greeted at your waking by the Feline Triumvirate, working together as a tight, tight trio.  Buddy the Outrageously Large Maine Coon was in charge of attacking the door and all major vocalization.  It sounded like a freaking tornado spinning out in that gaudy gilt and velvet hall. Marmy of the Fluffy Butt paced behind the other two, whipping that marvelous tail with each about-face.  It was kind of nice to hear that staccato undercurrent of her gutteral *ack*::*ack*.  That leaves the rest of the feline phenomenon in Dobby the Runt's domain. He was toe-tapping, rat-a-tat-tatting, bringing some soul to the beat they had going on.

I had shut them, and Fred, too, out.

The Spaz chose Easter Sunday to begin an all out blitz of my ragged nerve endings and my CRPS-afflicted attachments were flailing about with all the abandon of their resurrected joy.  It was hell.  It was the purist of agonies.  I kept yelling "He is Risen" out the Computer Turret windows -- more lead than glass pane.

I've declared war on my tendency to curse.  Hence, screaming "He is Risen" and, for some reason, "Ichabod Crane." For a week or two, it was "Christ in a hand basket," until Fred informed moi that that was, sniff, common.

So, anyway.

Umm.

Right!  The Easter Spaz Attack and the Eviction of All Living Beings From the Bedroom.

Fred left of his own Free Will -- to continue tossing in Christian textual pearls.  I had hobbled to the bathroom, the best bathroom in our West Wing suite, the one with the Lotus Pool.
Umm.
Right!

I wanted a space in which I could scream at will -- nothing to do with "Free Will," this screaming. It was a holler that demanded its own Appalachian valley.

When I came out, a very crooked smile pasted on my blotchy face, Fred was gone.  Along with his triple-decker sandwich and his grape soda.  La Bonne et Belle Bianca Castafiore is on tour with her troupe's most successful staging of Faust in decades, so I didn't have her or her entourage to throw out.

There was no one but Dobby.  Ever faithful, that little one.  He may be paid under the table, though, I don't really know.  I'd like to think he loves me enough that when everyone else flees, he runs toward me, the burning building, the swaying tower about to crash into waves of toxic cinder.

That may be overstating things a bit but it's my blog, not yours.

Much of yesterday's behavior was dictated by a visit to Dr. Go-To-Guy and Super Nurse Justine.  I did not even bother complaining of rabies, of CRPS sadism, and they attributed every bit of aberrant jerking to my aberrant personality, and the usual fever and chills.

Shake, rattle, and roll, My Babies, shake, rattle, and roll.

There is a sad tendency being played out in doctors' offices throughout the world, and when we all feel better, we need to stand up and change the damn channel.  I am referring, of course, to the prevalence of CNN on waiting room televisions.  Yesterday, I fought back by bringing my copy of Mother Jones to mix in with the Smithsonians and the well-fingered, tantalizing People magazines.

I underscored my CNN protest and my central nervous system maladies by an endless commentary on the purported "news." Things the receptionist may have heard:

"Yeah?  Well, I think you're oxymoronic."

"Yeah?  Well, why aren't you reporting on the dying baby Puffins on the Maine seacoast? The tragedy of baby bird fish food that is too large for their tiny beaklettes!" 

Most of my verbiage followed the "Yeah? Well..." formula.

So, Fred, Dobby, Marmy, Buddy, and I cruised around the Metro Tête de Hergé freeway pretzel while I hummed off key at high volume.  It about killed me to be in such pain, to be spasming to beat my cacophonous band, and not to be able to talk about it, admit it, show it.  Unless that off-key humming at high volume clued in my trapped audience somehow.  The dimwits.  

The sweet dimwits.

Sven Feingold was waiting by the moat when Ruby the Honda CR-V screeched to a halt just short of its pristine waters.  The sweet dimwits fairly peeled out of the car to interrogate him on his reasons for standing guard and to escape the putrid gaseous quality of Ruby's atmosphere.  Turns out Sven was just taking a break from some Maze work -- topiary saps his strength.  He knocked off for the day and joined us all for a fish dinner I had promised to cook.  We invited the best-crack-dealer-on-the-block but he was too busy organizing lookouts and runners, much in the way we used to get up a good softball game late in the breezy afternoons of my lost youth.

Well, that didn't happen. The dinner, I mean. People lined up to beg me NOT to cook, and to "go rest." I gave most of that crowd the "Yeah? Well..." treatment.  And I went to our suite to go rest.

My legs were dancing like a hopped-up whirligig.  There were four packages from Amazon dot com awaiting my penknife's slash.  I had ordered:  4 bottles of Valerian Root that were on a kickass sale and four canvas container thingies, designed for me to "organize" my CDs and sundries, an effort to make my office even cooler a place than it already was.  

Someone at Amazon dot com has gone batshit crazy about shipping.  I always request the option that offers the fewest shipments as possible, trying to curb my large carbon footprint.  I did not request "free 2-day Prime."  So why, barely 24 hours after placing the order, did I have four large boxes to unpack.  One box held one of the stackable canvas container thingies.  One box held another of the stackable canvas container thingies and three bottles of Valerian Root.  One box held two stackable canvas container thingies, stacked.  And the last box, unbelievably, contained one bottle of Valerian Root and what looked like an entire box of green puff pastries, those Earth-friendly biodegradable supersized bubble wraps, tied together like salamis.

So, anyway.

Umm.

Right!

I hope you begin to pity yourself, as you gauge your empty days against my full and abundantly purposed time.

Having made it to this morning, it was something of a hoot to be invaded by the domestic animal family and to appreciate its loving idiosyncrasies.  Little Dobby gave me a "don't try that again" warning look and then demanded a double grooming.  That means making the perfect jug of coffee and then letting it grow cold because his tiny white belly needs brushing and bubbles blown.  The coffee ends up seeming fine and Dobby stays on his back a good while, emitting pheromones of love and peace, and mixing biscuits upside down with precious tiny paws.

"Yeah, well, His is Risen, and you can just kiss my Ichabod Crane."

Don't forget, Dear Reader, I can hear every thought you can squelch out.

Buddy watched the Dobby Double Grooming Routine, hooting softly at the appearance of the second jug of coffee being set aside to cool.  Then Buddy got That Look. He's part engineer, part artist.  He's very Leonardo. I regret naming him "Buddy." The folks at the no-kill shelter had named him "Munster," as they had given the whole Maine Coon kitten clan discovered at a local horse farm (the tiny kittens sheltered under a Budweiser Clydesdale runaway, attuned to the plight of abandoned young...) the name of a cheese.  As we witnessed the destruction of which the young Maine Coon proved capable, "Munster" began to seem more appropriate than the mundane "Buddy," even though his heartening habit of sticking right with you, no matter what (except for CRPS spasms), engendered that name. He was "our buddy," and soon responded to the word, so we let it be.  

Now I think "Bubba" might be suitable.  He has that wild look, and an indecipherable eye twinkle.

So Buddy got That Look.  He's been perturbed by the hospital bed since its arrival in January.  Never mind the problems of three cats staking out three territories on a bed this small, because when you add me to the problem, my body becomes land to which a feline must lay claim, and my body bears the bruises and scars.  The comfort provided by the bed is often offset by the aches of the cat fights over its ownership.

Buddy is the most delusional of all.  He thinks it's all his, including the pale, jerking human form that takes up most of the actual mattress area.  He understands the controls and is the only one not to flee when the bed suddenly begins to move, or the trapeze slaps gently against a metal pole.  But he cannot conquer the affliction of the bed rails. He's grown since his arrival, as you've likely gleaned, my smarty-panted Reader! There are four entries to the bed that are essentially trails around the rails. Simply avoid the suckers.  Simple enough, you'd think.  It's good enough for Dobby, though he also likes to arrive via the wheelchair parked alongside the bed.  He enjoys leaping over the rails with the verticle assistance of the power chair.  If I am behaving within parameters, he will jump and land between my feet.  If I am misbehaving, violating some Dobby protocol (failing to groom being the most likely), he plants his pointy, pokey paws right on my legs and I scream at him while he trims his toenails.  But Buddy... 

Buddy wants to make his entrances to the hospital bed by coming between the rails.  It is a small space.  Granted, he's a cat, and cats can fit into the oddest places.  This feat, however, is not about fitting into anything -- usually a box -- but about passing through something without becoming stuck in it -- usually, again, a box.  You are likely familiar with the famous Maru.  Buddy is no Maru.

This morning, the gods of engineering and Buddy's personal artistic muse smiled upon him and he found the necessary alignments and twisty turns necessary to leap between the rails without need of rescue or first aid.

It was beautiful.  

And it's now something he wants to do again and again.

He's solved his problem;  I've acquired a new issue.  For the moment it is solved by a stopgap blockage of the passage with a quilt.

Marmy, for her part, is demanding that standards be upheld.  She has fussed at me in the manner of mothers the world over, a funny thing for such a heartless queen, she who left kittens scattered willy nilly about the floor as she stalked off, the bubble over her head proclaiming, "You want milk?  Suck this!"  I reminded her of how she quit in mid-delivery when Dobby was trying to be born.  I got a "Yeah, well, *your* mama..." as retort.

She did her job.

I remember protocol.

I know what I am supposed to do, and what I'm not.

I'm trying.

For Sven, I've sketched out a few topiary fixes.  He's putting in a whole English Boxwood section memorializing Alice's Trip Down the Rabbit Hole and the Mad Hatter is driving him crazy.

For Fred, I'm preparing the aforementioned fish dinner, with fresh vegetables and a careful hand with the herbs.  I'm also taking a boat load of Baclofen, so that the filet knife and I shall be an interesting pair.

I won't bore you with the complete list of my tasks, my jobs, the things that people deserve without the pressures of all that asking and answering nonsense.  

For Mother Earth, I've but admiration and intention.  See the beauty, big and small, usual and not so usual. See the ugly, and its needs, its wonders, too.  Pick up the yellow plastic newspaper wrapper stuck on the drainage pipe. Get mad about our radiated oceans.  Save a Puffin.

I pity you, Dear Reader.  The richness of life's tapestry around me calls up this pity, this sadness for you and what must be, by comparison, a bland and monochromatic existence.

You poor thing.

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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.







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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
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i love my go-to-guy

my eyes are almost swollen shut from self-pity, since my self-pity, combined with my rising fever and 9.9 out of 10 ranking on the retarded pain scale, equate to nonsensical tears but my mind is relatively unburdened, thanks to an hour and a half spent with dear, sweet, smart, inventive, superior go-to-guy, my "concierge" doctor that you'll have to shoot me to give up.  yes, i am poor -- and advocate living within one's means -- but i have budgeted for what i consider a compelling necessity, a medical gate-keeper.

anyway, his eyes lit up as he hit on an idea of how to work our peculiar situation and magic with the HMO i am now enrolled in, and with which he is not affiliated.  but the flat fee that i pay each year to "retain" him, well, it retains him.  in dire circumstances, and we are familiar with them, having him around... pays off.

anyway, we went over blood work, we devised a plan to so mesmerize the HMO and the physician i will have to choose in their network, and then...

we decided it was time for me to have a hospital bed with a trapeze. that will make things easier for me, but is one of those moments, you know?  the "oh, yeah, i am ready for disease and disability to reduce me a bit farther." reduce me, constrict me... also, though, on that sliver of pragmatism to which i cling -- it's a change that won't reduce me to tears when i think of how to turn over or sit up or, the ultimate!  when i think of how to both sit up, pivot so as to sit on the side of the bed, then stand and walk to the bathroom.

i went to my doctor's appointment without having brushed my teeth, much less showering.  that caused mucho boo-hooing on my part.  i am nothing if not ridiculous.

it's going to take a while to get the new doctors on board ("you realize they are going to take one look at your history and my summary of the last few years, and either take off running, screaming, or try to reinvent the wheel by ordering every test under the sun, don't you?") and so it will take a while before my carefully put together bedroom gets torn apart.  captain haddock is going to have a cow.  marlinspike hall's beautiful and antiquated décor -- and by "antiquated,"  i mean full of gorgeous and one-of-a-kind antiquities -- has never been so abused.  maybe the haddock corporation will see this as the last straw and put me and my belongings in a pile by the barn, just beyond the moat, and the reach of the drawbridge.  maybe the carnie rehab facility, right now mostly limited to cirque du soleil and local freak show addicts of the finest and most acrobatic kind... will take me in.  i could be a kind of barn mother hen.  and heck, who knows what monumental one-of-a-kind gymnastic moves i can come up with when provided with a hospital bed and a trapeze? eh?

see?  it's all rather too much to take in.

so we're cooking a chicken pizza, and plan on watching something mindless. dr. phil, or one of the multitude of law and orders.  maybe a cold case, or judge judy.

go-to-guy also rapidly and kindly filled out my POLST form, so i am covered -- live and let die!

my mind is jiggling like jello.

© 2013 L. Ryan

Go-To-Guy and Kick Ass Justine: The Good'uns

Hi all,

It's been a weird time.  Unable to sleep, not just a case of insomnia, but a complete dereliction of repose.  My repose sentinels have slacked off their duties, the lazy bums.

But there is good news!

My go-to-guy doctor gabbed on the phone with Doctor Sex Kitten, my ophthalmologist, and was able to work out an agreement so that I may undergo general anesthesia and eye surgery at an outpatient day surgical center.  He gave good guidance to her about dealing with CRPS, pain management, and advised against freaking out over my pre-operative blood results, as my goal in life is to redefine "normal." He's a good man, my go-to-guy.  As is his trusty sidekick, Kick Ass Justine.

I don't think he realizes all that Kick Ass Justine does for him.  Beyond the details of working as his nurse (she is a most excellent vampire), she serves, quietly as his Gate Keeper.  She also puts up with beaucoup nonsense, such as older white gentlemen of the Southeastern USAmerican sort who do not wish her black hands to apply, for example, the leads required to record their heart rhythms.  One of these Southern Gentlemen actually slammed a door on her foot after she refused to find a nurse blessed with lower levels of melanin to draw his sludgy putrefied blood.

We enjoy each other.  We shut the exam room door and -- somehow this must be the word -- dish.  We dish it out.  She tells me about the assholes, the women who come in every week with palpitations and the vapors, the man who calls every morning, certain of being near death, and who wanted to sue when psychiatry was mentioned.  She tells me about her grandparents, her daughter, who is just starting her own career in nursing, and the struggles of being a single parent in a bad economy.  She fervently prays before every blood draw and has the distinction of never having failed in that mission.  She advises me on my dysfunctional family issues, as her family is eerily like mine.  We talk about New Orleans a lot, why, I do not know.  We talk politics and Tea Baggers, and we curse like gilt-tongued sailors full of good grog.  Go-to-guy doc often has to tap on the door and ask if it'd be all right with us if he came in for a little visit.  Sometimes, we say "no, not yet... we'll get back to you."

She tells the sad tale of her nephew, a young man who was suffering a horrible stroke, turned away at the fine, award-winning facility across the street from their office, then carted around town until finally being dumped at the local charity hospital -- by which time, he was in a coma and remained in a vegetative state until his death years later.  She tended him, and led the family fight for justice against the fine, award-winning facility that did not like the color of his skin and his inability to produce his insurance card.  Kick Ass Justine has never forgiven me for not suing that same facility after my own disastrous experiences there, and even after all this time, will occasionally curse me out -- in her mildest curse-out mode.  "You could at least be comfortable..."

Anyway... she and the doc she looks for have again done good things for me, and I am so grateful for them both.

They filled out the annoying voluminous documentation required to renew my disability certification, patiently reassuring the huge corporation that keeps me in poverty that I remain "permanently and totally disabled."   Most physicians charge for this service -- but go-to-guy and his gate-keeper gather all the records and provide detailed documentation, and actually get it back before the deadline.  Try to thank them and they respond with weird comments like: "We're just doing our job."

So July will see preoperative clearances and testing, and come August 12 and August 26, Doctor Sex Kitten, my ophthalmologist, will slice and dice with joyous abandon.  At last check, Fred and I will be required to return to her office DAILY for a month to make sure that my glaucoma doesn't go rogue during the recovery period.

Which reminds me... a vent about parking fees is long overdue...

"Even in this nicke of time, this very, very instant."

I'm probably the only person in the northern climes running the air conditioner.  My initial excuse was that the air needed dehumidifying.  When that got the bald eyeball, I admitted to being hot.  Now it's getting a bit cool but I'm safely ensconced in comfy bedding, hoping someone else will discover how to use the thermostat.

Life with fevers!  Hot, cold, sweaty.  I want frozen fruit, no, wait, I want hot soup, with many spices and several of TW's dried jalapeños, for good measure.  Wait, hold the soup, and gimme an ice pack!

But it's been kind of a nice day.  Pain sitting at a mere 6 out of 10 (whatever the heck that means) and Buddy has discovered all my old cashmere leg warmers.

Cashmere leg warmers, when sprinkled with catnip and then rolled into a ball, are objects of drooling adoration for Mr. Buddy.  And they're perfect for me -- I throw like a girl, so what better thing for me to be tossing about but bright red or sexy black cashmere leggings?  I am achieving amazing distances and Buddy is uprooting all the haphazardly strewn about area rugs in our chichi wing of Marlinspike Hall.

I have quarantined myself in our cozy little wing because the staff is coughing and sneezing and generally making any gross respiratory-related, gravelly noise possible.  Roughly 80% of the staff has the flu and the other 20% are apparent mimics.  I'm not letting those walking microbes across my line in the sand... not for nothing.

Every year, my MDVIP Go-To-Guy and I have the same conversation about the flu vaccine.

Oh, I probably haven't mentioned that I had the Grand Pooh-Bah of MDVIP Appointments last week, last Thursday to be exact.  I dread these annual affairs, and they always turn out... fine.
More on that later.

Back to the recurring flu vaccine conversation.  Back in 2005, I was an advocate of the vaccine, thought nothing of it, was very grateful for it, even though I'd had the flu a few times after getting it -- either getting a variant not covered by the flu-guessers or bad timing.  That year, I'd just had my right shoulder replaced by none other than our beloved ShoulderMan -- it was our first meeting, back when things seemed much more straightforward!  I had a few problems afterward, weird stuff, of course -- a necrotic lymph node right next to the surgical site, and a pretty severe anemia, despite having had a top-off at the hospital prior to discharge.

This was before Go-To-Guy went all MDVIP on everyone, back when he was one of the founding docs of a pretty large, very busy practice.  I came in because I was inexplicably getting weaker, and  blahblahblah we discovered I was just anemic.

"While you're here, why don't we give you your flu shot?  I know you're a little run down, but what could happen?"

Please pay attention to that phrase: "what could happen?"

Informed consent, wham, bam, thank you super nurse, I got my shot and we headed home.

Two hours later, I was deathly ill.  Fred, not always quick to pick up trouble, being a cheerful and positive kind of guy, went and bought the Mucinex that Go-To-Guy recommended.  And that's the last thing I remember until I woke up about five days later on a respirator, overwhelmed by the sensation that I had missed something.

Anyway, "what could happen?" became a catchphrase that reduces me and Fred to tearful hysteria.  It just cracks us up.

And Go-To-Guy wipes the story from his memory every year.  Psychic trauma does that to people.
Last Thursday, as he talked me into taking the pneumonia vaccine, he opened his mouth, which then sort of flapped around aimlessly, because you *know* what he was about to say!  It was almost the same situation as the phrase's début iteration -- we were dealing with being rundown from my stomach bleed, with a low hemoglobin (but so much better, thankyouverymuch!).

I about fell on the floor laughing.  (No, I didn't.  That would have been... rude.)

There's been nary a hint of a problem from the vaccine.  But think carefully the next time you're tempted to gloss over potential pitfalls with a blithe "what could happen?"!

So... part of these annual MDVIP "physicals" is a prompt summary letter afterward to remind you of what you just talked about the week before.

The happy experience of discovering that my desire to be on "Do Not Resuscitate" status was not going to cause me or my treating physicians a boatload of upset or the need for reinventing the wheel -- well, I had not had the chance to even run it by my MDVIP Go-To-Guy Treasure of a Physician.  We had exchanged emails, but I was always in a snit over something, over-the-top, and he's a born optimist.  So I was never sure if we were talking about the same thing.

That my last hospitalization went so well, that this potentially thorny issue proved thornless, had nothing to do with him -- turns out, he didn't even know I had stayed as long as I had.

So last week, I let him know the day before the big exam that I was hurting a lot and would appreciate it if we skipped most everything so I could get home and rest my nasty bones.  We always need to go over meds and that takes a long time -- it's very useful and helpful, and it actually serves well as a guide for what is going on in each "system." As we discuss a drug, we discuss the problem, we make adjustments, etc.  We review my blood work, which, frankly, depresses me.  There is no way to dress up those results.

I couldn't bring myself to look at this kind man, or at his super kind nurse, and even say "DNR." But I found words, and delivered them with what I hoped was good humor and appreciation.

Here's the relevant paragraph from the letter I got today:

"Unfortunately, you continue to have severe pain with your hips being the most prevalent at this time.  It is certainly possible you have an infection in one or both of your hips and it sounds like your left shoulder may have infection in it as well.  The elevated white blood cell count and the persistent low grade temperature support this fact but we really have not been able to eradicate this infection by the use of either oral of IV antibiotics.  As you said to me, I think right now the best approach is pain management and 'putting out any of the fires that we can.' Ideally, surgical resection of any hardware in your joints with heavy doses of IV antibiotics would be the only way to eradicate this ongoing infection but I am not sure you are willing to proceed with anymore surgery and frankly, I am not sure if your body could take much more than what you have been through."

He did hear me.  He always has.  I am really blessed.  Because I did not make it easy for my physician to hear me.  I flirted with the concept of "stopping," but then, when it got hard, I called for help.  Now comes the test.  At any given time, there are "fires," but which are the ones that threaten the foundation?  Which are just flare-ups, little grease fires that can be squashed with a cooking lid or stifled with a damp towel?  When do I just drop and roll -- with prayer or mute begging to the universe, or, if I am doing well, and have done my work, the hope of resolution?  And when, prayer, begging, and work done, but Death dallying, do I call for help, because it's just a straightforward blaze that a spritz or two will stop?

Were he not such a good guy, I'd ask MDVIP Go-To-Guy, but it's not his place to be asked, and it's not his place to answer.  It's not Fred's place, though it will be his to endure the results.

It's time for me to grow up -- it's the very nick of time.  I'm gonna have me a chat with Buddy.

NICK OF TIME

Origin

The English language gives us the opportunity to be 'in' many things - the doldrums, the offing, the pink; we can even be down in the dumps. With all of these expressions it is pretty easy to see what they refer to, but what or where is the 'nick of time'? It may not be immediately obvious what the nick of time is, but we do know what it means to be in it, i.e. arriving at the last propitious moment. Prior to the 16th century there was another expression used to convey that meaning - 'pudding time'. This relates to the fact that pudding was the dish served first at mediaeval mealtimes. To arrive at pudding time was to arrive at the start of the meal, just in time to eat. Pudding was then a savoury dish - a form of sausage or haggis (see also the proof is in the pudding). Pudding time is first referred to in print in John Heywood's invaluable glossary A dialogue conteinyng the nomber in effect of all the prouerbes in the Englishe tongue, 1546:

This geare comth euen in puddyng time ryghtly.

That seems a perfectly serviceable idiom, so why did the Tudors change it to 'the nick of time'? The motivation appears to be the desire to express a finer degree of timing than the vague 'around the beginning of the meal'. The nick that was being referred to was a notch or small cut and was synonymous with precision. Such notches were used on 'tally' sticks to measure or keep score. Also, during the 16th century, pudding began being used as the name of sweet dishes and they were usually served at the end of the meal. As this trend continued 'pudding time' being used to mean 'in good time' made less and less sense.

Note: the expressions 'keeping score' and 'keeping tally' derive from this and so do 'stocks' and 'shares', which refer to the splitting of such sticks (stocks) along their length and sharing the two matching halves as a record of a deal.

If someone is now said to be 'in the nick' the English would expect him to be found in prison, the Scots would picture him in the valley between two hills and Australians would imagine him to be naked. To Shakespeare and his contemporaries if someone were 'in (or at, or upon) the (very) nick' they were in the precise place at the precise time. Watches and the strings of musical instruments were adjusted to precise pre-marked nicks to keep them in proper order. Ben Jonson makes a reference to that in the play Pans Anniversary, circa 1637:

For to these, there is annexed a clock-keeper, a grave person, as Time himself, who is to see that they all keep time to a nick.

Arthur Golding gave what is likely to be the first example of the use of 'nick' in this context in his translation of Ovid's Metamorphosis, 1565:

Another thing cleane overthwart there commeth in the nicke:
The Ladie Semell great with childe by Jove as then was quicke.

The 'time' in 'the nick of time' is rather superfluous, as nick itself refers to time. The first example of the use of the phrase as we now know it comes in Arthur Day's Festivals, 1615:

Even in this nicke of time, this very, very instant.

Compassion and Goodness

One of the things I do quite a bit these days is cry.  If I did it prettier and without a runny nose, I'd say that I "weep," but who am I kidding?  I have been known to blow my nose on my tee shirt and wipe my eyes with the back of my hand, flicking the moisture willy-nilly, or letting Dobby clean me up.  He does a great job, even if it does mean that I have to go disinfect myself afterward. He gives a bit of a cheshire smile when I attempt a purr. If someone, even a cat, shows you that much love, you don't interrupt so as to make a critique.

Despite the growing proclivity for leaking saline, which, given my fevers, I can ill afford, emotional stuff builds and builds until bursting seems the only option.

 From Compassion and Goodness

That's when having a best friend sitting close, gently, with savvy, holding my CRPS hands just right -- not stroking, but holding firmly -- would be nice to have.  That I don't is entirely my fault, but doesn't keep me from that morsel of self-pity. I could change this friendship dearth in a mere moment, but I don't, and that's stupid.

Add it to the Stupid List.

Back when I tried to help out some in the fight against people being homeless or so flirting with homelessness that their days were built of bricks dense with stress, back when I spent the day encouraging and fussing, modeling and experimenting with young minds, chalk in hand, back when rushing home to make simple pasta, marinara, music on, back when... I never cried, wept, or had many ocular leaks at all.  The lesson?  Stay busy, do what you love, give back, and be open to the day's unexpected gifts.  Lacking a means of transportation, the men at the shelter welcomed me onto their duct-taped, prayed-over bus that left at 5:30 AM sharp, and got me to the closest metro station for the second stage of my journey to school.  They were sleepy sweet, bitter sharp, funny, depressed, hopeful, a boon one to the other, and to me, the hitchhiker.  It got more complicated as I lost mobility and my scooter joined the dangerous pile of wheelchairs and walkers that we very illegally stashed in the doorwell.  But no tears, not even from the men who surely had reasons to dissolve.

I need to recreate that experience -- without the "elderly, sick, and/or disabled" men without physical or emotional shelter to call their own, without the ensuing two-hour trip to school, without the talented teens on hormone overdrive (and their equally uneven instructors), without the pots of roiling, boiling water and rotini, the rush back to the shelter for evenings of laundry and serious competitions of hearts, spades.  In between hands, grade a paper here, grade a paper there.

Please don't stop, don't allow yourself to be stopped.  If you pause, even, covet the busy-ness with love, and return to it refreshed.

Should you, though, find things rough going, and going rough for too long... Should you not feel rested after resting... Should you lose the joy in passing as yourself through hard things, remembering your swollen feet on the crowded platform, and not the too-cool-for-school fourteen year old goth giggling with a cardiganed lady who, given their shared nose stylings, must be his grandmother... Should that happen, don't stop, still don't stop, even if it means a decade or so of traveling to a hard cadence, of walking from the same points back to the same points.  

If you've read much of this odd blog, you will have found the occasional reference to a man called "my MDVIP Go-To-Guy." He's a doctor who stepped out of most of the madness that has overcome medical practice, deciding instead to have a smaller practice, dedicated to wellness and the spending of adequate time and attention to each patient.  I remember him saying that he wanted to enjoy practicing medicine again, that he was spending excessive time on paperwork and insurance companies and we all know to what he is referring.  I suspect he is a Republican, but I forgive him.

When I had to go without insurance because BCBS priced me out of coverage (They raised my premium four times in a year, to $1513/month, plus a hefty deductible;  They simultaneously began denying me coverage for procedures that needed repeating, like cultures to identify nefarious infective bugaroos.)  Left uninsured with an active bone/prosthesis infection, my MDVIP Go-To-Guy got me through that time by researching the cheapest drugs, by being so vigilant that I never once had to be hospitalized.  He was often praised with the highest praise we have here in Tête de Hergé, being named "a prince, a peach, a pear." 

But when the Affordable Care Act passed, with its life-saving provision of PCIP (The Pre-Existing Condition Insurance Plan), I had to have the infections addressed by a bevy of specialists, the bevy-est of micro-managers who saw me as an eyeball, a shoulder (sometimes left, sometimes right), sticky red blood, and ill-behaved connective tissues, some odd neurological disorder, and a twinge of an attitude.

Essentially leaving the attentive care of the prince, the peach, the pear for Infectious Disease Dood, Shoulder Guy, and a host of White Coats that often didn't even bother to introduce themselves before billing me $300 for scribbling in my chart after sticking their pointed heads inside my hospital room to swap howdies, I felt very much left on my own, and helpless.

What was the plan?

Who was in charge?

Why won't you answer my questions?

Because he accepted email communication, I began a process designed to keep my MDVIP Go-To-Guy up to date on the goings-on, because Lord knows, in this technical age, it's nigh unto impossible to fax, scan, email, or convey telephonically any results, plans, ideas related to my care.  We were dealing with an infection whose bacterial, viral, or fungal basis refused to grow in the laboratory, despite being abundantly evident in surgery.

But then, you know all that old story.

Lately, I have abused the email privilege.  Well, honestly, I don't think I have, but I know that most would say so. 

I don't know what I would have done these last few weeks were he not there at the other end of these garbled messages.  He is limited -- by good sense, and by, I am sure, legalities -- in how he can respond.  But that he does respond, and hasn't yet ordered me put in a special quiet quilted-walled room in some out of the way facility?  Well, it's life-saving.

But I do violence to him with my words -- you've seen me do the same here, you know what I am capable of, and how I excuse myself by calling it "honesty." 

This is the wound I inflicted yesterday:

Hi MDVIP Go-ToGuy,
I have to thank Nathalie at Dr. G's for suggesting that I try to get you to have more control over the specialists that are handling my care.  They're great, talented, and all have tunnel vision.
This morning I had another experience like the one last Tuesday, a rapid and distressing temperature spike, with dripping sweats and a heart rate ranging from the 50s to 120s -- within a half-hour of doing my first antibiotic infusion of the day.  You'll forgive me, but I had already had 2 Endocet for pain (=650 Tylenol), so I dug up my bottle of ibuprofen and took 800 mg, got in bed under a heavy blanket, and just got through it.
The second infusion -- about 2 hours later -- also brought on a reaction, but a smaller spike.  I hit 102, nothing near the 103.5 from last week, but it felt pretty awful.  This time I added ice packs.
THE PICC LINE IS INFECTED, it has to be.  Both of Dr. B's PAs, Susan and Jacqueline, came to that conclusion last week, but he overruled them, saying that even if it is, the cefepime should "cover" me according to whatever grew in the blood cultures.  It only occurred to me today to wonder if my aortic valve is at risk.  Wouldn't that be a hoot.  But there's no "hardware" in my heart, so blahblahblah!
Outside the semi-crises that occur with infusions and flushing the lines, the rest of the time, I am exhausted, in extreme pain, but forcing myself to be an admirable domestic.
The pain in what-was-formerly-my-shoulder is worse.  Now this could be because I am forcing its use, trying to grow some of that scar tissue that supposedly will one day function like muscle.   But who knows?  The hip pain is now in both, with the right remaining much worse.
The spasms are back, as well as blood sugars that defy logic. That's at 50 units of 70/30 twice a day and sliding scale before meals.
I'm going to put my four years of experience with prosthesis/bone infection to the test, go out on a limb and cry, "infection!"   And my specialists are all going to look at each other but no one is going to look me in the eye.  If this is going to kill me out right, or some complication of it, just tell me  It won't be a shock.
So long as I have an ID doctor who doesn't even check my weekly CBC results -- only blood culture results matter -- and a super shoulder specialist who only looks at... shoulders, etcetera -- I don't have a chance.  Yes, I believe there are some of those nasty bugs in my hips, so making the appts to see Dr. S's team is smart.  But I'm exhausted, depressed, and tired of telling this story to doctors who then look at ME as if I'm crazy.
I can tell you now that he'll order a "tap" of the hip under guided fluoroscope, they won't get anything to work with, and he'll say, "well, everything looks fine..."  I've had 10 taps, without results, that turned out to all be in infected areas.
Speaking of crazy -- I think my brain is infected, or that CRPS is having more of an impact up there than I expected.  For the first 15 minutes or so at the start of every episode of spasm, I am suicidal.  That's not an exaggeration, I am not trying to get attention.  It lasts almost exactly 15 minutes and it is a real struggle.  Then, I cry a bit, and it's gone.  Not the spasms, of course, they hang around for hours!  I use the mantra of "it's only 15 minutes," but one day, that 15 minutes is going to coincide with something else, and that will be that.
I've passed out twice this week, both times during a transfer from bleeping wheelchair to the bed -- if you have to have a brief black out, doing it on the bed is a good choice.  I am trying to drink more, because it's got to be dehydration...
Beyond a puerile "please just make it all stop" request, is there some way to draw up a plan, slow things down?  I always feel like I need ID help right when they have checked off their to-do list of 6 weeks of X and 4 weeks of Y -- because I go by symptoms, and the rousing sense of failure that hits when they say "we're done, call us if you need us!"  Same deal with Dr. D -- now that the shoulder is gone, why should he care that the pain is worse and eerily familiar to earlier pains from infection?  And, trust me, there's no one to call during my 15 minute dalliances with suicide -- or if I did call someone, it would be a CYA response.  Who do I tell that I am just crazy enough to think my brain is infected?
So... when you were signing up hale-and-hearty patients for the preventive medicine you were hoping to practice via MDVIP, you must have rolled your eyes to see that I wanted to tag along, eh?
Ah -- the worst fever symptom of all?  Over 101 degrees and I want all physical issues solved, as of yesterday.  I am also rude, weepy, and annoying, even to myself.  I hope to avoid a hit of spasms with these fever attributes -- I wouldn't be able to find a single reason to justify my existence, not in a mere 15 minutes.  My reason for living is Fred -- not love of Fred or even fondness of Fred -- but the need to be able to leave him a little more money than I have right now, and with organized finances, and a house in good repair.  Otherwise, he will be lost.
So what can my MDVIP Go-To-Guy pull out of his hat to help this mess?  No, thank you, I don't care to speak to a counselor or a psychiatrist -- that detracts from my primary objective of accumulating massive amounts of wealth to bequeath the guy snoozing in front of his computer, oblivious to all...

This time, I thought, I might well get a "cease and desist" courier-delivered letter on fine linen stationery, thanking me for having made his practice so much fun and encouraging me to go spread enjoyment elsewhere.  The main thing, you're just not supposed to use the S-word.  I use it and use it often, as part of my effort to use the most appropriate word for sign/signifier/signified/referent.  I got bit with the Saussure bug.

You Readers are pretty sharp.  You might well have already imagined MDVIP Go-To-Guy's response, which I just got, right in the middle of a weep.

Sorry for the late response. To be honest with you, I read this late last night but was so overwhelmed by the email, I wasn’t sure how to respond. 

Your issues are clearly not simple and this is way out of my expertise.
The only thing I can suggest is that I call and speak with Dr. B myself to get a clearer understanding of what his plan is. 

Unfortunately, I am leaving town in the morning for a much needed vacation...
I will try and call him [on my return].

I’m sorry that I cannot give you any better advice than this but I truly have no other ideas of what to do. 

In my 23 years of practice, this is clearly nothing I’ve ever dealt with and I must rely on the specialists for advice and guidance.

The office will be open with Dr. K manning the ship in my absence. J will be here.
If you’d prefer to see me for an appt when I return next week, I’m happy to see you.

Like I said, "a prince, a peach, a pear." 

Just being heard, feeling heard, relieves the pressure that threatened to make a protoplasmic mess all over my clean floors.

So I was able to fire off the last word... 

All right, MDVIP Go-To-Guy, I've hit upon a brilliant plan.
You need a vacation (of that I am sure!).  I need a vacation, too.
So I'll make some version of one... maybe do a virtual world tour, immerse myself in the Olympics, remember how to laugh again.  Renew some of the family relationships that oddly seem to start up again after someone dies (very perverse, that).
Maybe I should try doing a good deed now and then.
So... let the vacations begin, PICC lines, and brain dysfunctions be damned!
You are possibly the best doctor around -- but don't get a swelled head.  That's MY purview.
Thank you.

So once I publish this, you will have, and I will have, proof tangible, bolded and in color, that I am far from alone, far from uncared for, and that fighting that 15-minute fight -- for now -- is worth every bit of the effort.