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
Follow my blog with Bloglovin

Going up, again.

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

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


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

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


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

Chuckle.

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

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

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

Weary giggle.

Weary sniff.

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

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

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

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

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

Are you sure?

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

Mwa ha ha!

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

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

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

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

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

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

Courtesy of The Joint Commission:

A sentinel event is an unexpected occurrence involving death or serious physical or psychological injury, or the risk thereof.  Serious injury specifically includes loss of limb or function.  The phrase, "or the risk thereof" includes any process variation for which a recurrence would carry a significant chance of a serious adverse outcome.  Such events are called "sentinel" because they signal the need for immediate investigation and response.

Sween yelled that there was no way I had suffered an adrenal crisis due to a failure to premedicate (also intra- and post- medicate, but I don't want to seem picky).  It just wasn't possible and anyone who thought so did not know what they were talking about.  And, certainly, the person ill-mannered enough to actually go into complete adrenal failure was a person to be dismissed and ignored.  As soon as the nitwit navigates his way out of cardiac and kidney failure, squeezes by the dangers of that hospital-acquired infection, 'n his heart rate sees the underside of 160, that is...

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

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

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

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

Almost, but not quite.

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

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

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

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

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

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

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

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

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

Shiver. More shivers.

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

I cannot answer their polite queries, of course.

I have no voice.

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

Yes, well.

Not even my dreams are subtle.

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

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


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


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

a confusion of appendages

I am having some new difficulties and apologize to my scant readership for not posting much, either in quantity or of quality.

Mostly, these problems are neurological. I find the brain and its doings fascinating, usually, but not so terribly much when the brain in question is stashed in my own skull.

I think I've written before about the "Where is my leg?" phenomenon, wherein locating one's own appendages in space becomes either problematic or hilarious, depending.

My upper body has joined in the fun, my hands being downright wicked.

I caught Fred watching me last night as I was dressing down these things called legs. In transit from the bathroom to the bed, a voyage usually marked by pirouettes and grands jetés, I lost control of my legs -- in the sense that they decided my directions were flawed. All I was asking for was a basic straight line of approximately seven steps, with the assistance of a cane . Ironically, there is one major obstacle in my carefully delineated path, and that is my wheelchair.

It won't fit through the bathroom door, and so is parked alongside the bed, where I try to keep it connected to the charger. You never know when someone's gonna call out, "Road trip!" -- and I wanna be ready.

In addition to the chair itself, then, I have the thick wires of the battery charger that snake across my path.

Lastly, there is one red plastic water bowl, Dobby's Beloved. I keep it neatly tucked in the corner behind the bathroom door. Alas, that is not where Dobby likes to keep it. He nudges and moves it with the encouragement of his nose and a front paw.  (Yes, he still talks to it, even sings in an odd chirpy dirge, followed by head bows and head butts -- and water everywhere, of course!  Silly humans, we love to watch and eavesdrop, and I don't think we would be totally shocked were the bowl to talk back one day.)

He seems to prefer it precisely in the middle of the path between door and wheelchair, approximately one-third of the distance between the bathroom door and the beckoning bed.

There's no need to weave a fun, cute story out of this Journey of Seven Steps.  With my brain set on dementia, apparently, I could not provide my legs with directions that they thought worth following.  

The first thing my right leg decided to do, when realization of its freedom set in, was to kick Dobby's beloved red water bowl -- freshly filled with cold, filtered water, of course.  This is an old picture of my right foot -- from about three years ago.  It's much worse now, after deep ulcers, repeated nail loss, and the general deleterious effects of CRPS. You can see the beginnings, at the top of the foot, below the toes, of typical CRPS lesions. At the moment, the right foot's coloring is a deeper purple, certain areas evocative of, say, *black*, whereas the left is chilling and holding at a kind of grey-blue.





CRPS in right foot, approx 2007.  (I don't recall the reason for the tape)
Since then, the foot has ulcered, fractured, and lost nails.

  
Here is an even earlier photo that shows both feet -- It would be wonderful to return to that state!  It looks so much less painful than what I am now experiencing.  The left leg, at present, rivals the right in terms of pain, but the right will always be worse, I suppose, both in appearance and sensation, as it was the site of the initial "noxious" injury in May 2002.  Somehow, miraculously, the left foot has also escaped most of the little traumas over these past eight years -- no cuts, scrapes, ulcers, bruises. (I did lose the big toenail for some reason)  It is only in the last month that the left leg has joined the right side in the torture of spasms-'n-jerks hi jinks. 





This was very early on, maybe 2003/4.  The level of discoloration extended just above the ankles.  Now it extends above the knee on the right side, and just below the knee on the left.

 




These were my "winter" CRPS feet -- thin, very purple, ice cold, incredibly painful.  In the summer, there was more edema, a redder cast, and they were sometimes radiating heat.   Again, much different, much worse, now.

 
Both feet have been fractured multiple, multiple, MANY times... to the point where we barely react anymore.  We certainly no longer report the fractures as needing immediate care, because the advice is usually inappropriate for the disease.  You do NOT want to immobilize a CRPS limb.  You do NOT want to apply ice to a CRPS limb.  And you really don't need to rush off to get an x-ray after the fifth or sixth break... It's been documented to death. Another confirmation by x-ray and a wasted bone scan just lines someone else's pockets with green.  Generally, I will tell my internist or ortho at a regular appointment, note their sage advice, and then continue doing what I know is best. 

I remember the first bad fractures to the metatarsals of the right foot. It was my introduction to an orthopedic surgeon who specialized in feet.  He seemed to be expecting quite a tale to explain the broken metatarsals, the incredible edema, and the astonishing array of colors.  He was pretty disappointed by my claim that I took a step outside, on concrete, and they just broke.  I had not been diagnosed at that time.  He knew, of course, immediately that this was CRPS, and advanced enough already that I had broken bones by simply stepping onto concrete.  Did he tell me, or even suggest to me that something more ominous than weak bone in a previously badly broken ankle, was going on?  No.  He asked me if I would mind him writing a letter to the orthopedic surgeon who had repaired the ankle (my shoulder doc, the asshole Eric Carson, major player, major cause, of my "sentinel event.")  Anyway, the foot guy knows me well now, and nothing much surprises him anymore. 

We did once furiously clash -- furiously, awfully, saying things that hurt. This time, I had my diagnosis, and I was consumed with anger at every doctor who had contributed either actively, or -- almost worse -- by maintaining a complicit silence, to my loss of quality of life.

It was hellaciously hot, and I was being sent to him on an emergency basis, as my right leg had very suddenly worsened.  It was huge and red and throbbed in cadence with the miles of backed up, churning, honking traffic -- the trip, first to my internist, then across two counties to this OS, was marked by an extremely bad attitude, considerable cursing, and a partner that was ready to kill the next hindrance to appear.

The week prior, I had sent a letter to the billing department of this huge orthopedic practice.  They were blatantly double-billing, determined to get the payment they felt they deserved, no matter the opinion of my insurance company.  Balance billing was the usual method, though sometimes they liked to dick around (à la the Happy Hospitalist!) with coding.  The PA once treated me to a 15-second injection of cortisone that ended up costing my insurance company over $600 -- coded as surgery, etcetera.  They tried several times to charge for splints that I actually had to buy elsewhere (Oh, *that* is quite the racket... they refer you to what amounts to a specialty boutique for splints/braces, saying they will make custom devices and carefully fit them and blah blah blah.  Upon arrival, the fee is immediately addressed, and when paid, you are escorted to a room in the back.  The, uh, specialist comes in, looks at the involved body part, hums a show tune, and grabs a box from the pile of boxes on the shelves.  He handed it to me, said, "This oughta do it..." -- signed the fee sheet -- and advised me that "the girls" would check me out, and to be sure to have a good day.  My insurance paid, without question, $200 for the brace -- almost identical to what you'd find in a drugstore --and over $200 for the "evaluation" and "fitting.").

So I wrote a letter.  I used to do a lot of that.  Now, I don't bother, as it makes no difference.

The congenial billing department wanted the medical crowd to know what an insufferable ingrate I was, especially considering that I had, at that time, great insurance, so they had appended my letter to the front of my chart.

It really was hellaciously hot that day.  I was kind of scared by my internist's reaction to the state of my leg, and I was acutely aware -- newly so, but still acutely -- that no one honestly knew how to deal with CRPS.  It might have been 3 or 4 months since my then new neurologist had made the diagnosis, to the consternation of the hospital and the involved orthopedists.

He lit into me like nobodies business, this doctor.  Yes, he knew it hurt, and badly.  That was what CRPS was about, didn't I understand that?  Didn't I know yet that that was my life now?  What did I expect him to do?  Loud and jeering, he seemed to yell, but probably did not.  Over and over he spoke of the worst pain there is, and explained, angrily, why -- because it never stops, it never relents, it never gets better.  I, the patient, had to change.  I had to adjust.  I was crying and without the benefit of a tissue or handkerchief, I remember smearing snot all over my face, and then being angry and frustrated about THAT. 

I yelled at the x-ray tech who kept grabbing my leg so as to get the right picture.  I did not yet know the secret:  if you tell a medical professional to NOT touch a body part, the first inclination will be to TOUCH that body part.  Often this comes -- or so one of them decided to tell  me -- from a desire to ease pain -- I suppose with some sort of bleeping Healing Touch ("energy medicine") in mind.  Beware the practitioners of Healing Touch, unless you ascribe to its theories, as it is impossible for them to understand that sometimes even the gentle, lavender-scented, sun drenched waves of air created by their sanctimonious undulating hands can cause severe pain to someone with CRPS.  Plus, they annoy me, and I say this despite the convictions of a dear, dear friend that the love in her hands can cure all...

That day?  There was no love in the air!  When he finally examined me, Foot Guy managed to pose a few questions and fairly leapt at one of my responses.  My answer, he crowed, provided the diagnosis -- I had a blood clot, by golly.  (No, I'll not embarrass him by telling you the question, though I will tease you:  It involved a symptom that occurred when I took a deep breath.)  Why, by George, by Golly, by Gee, it *was* an emergency after all.

He was ecstatic.  We had all enjoyed about 20 minutes of air conditioning and declining levels of anger, resentment, and adrenalin.  Plus, now he could save face by sending me for an emergency doppler/ultrasound at one of the area's many hospitals -- two of which were just blocks away. 

Of course, he thought it best to send me back to the very heart of downtown, to the hospital across the street from his practice's main clinic.  That made sense, especially since one of the nearby hospitals had multiple stored copies of several prior doppler studies.  They might have been able to simplify things by comparing those previous studies with a new one!

Having successfully avoided the best quality of care, Fred and I set off, again, now in rush hour traffic.  The highway was like a parking lot.  Fred gets frustrated in this situation, and tends to stop and start with huge jerks, speeding the distance of a few car lengths, then jamming on the brakes.  So, of course, I jammed my right leg against the floor mat in an imaginary effort to apply also-imagined brakes.  We both heard the crunch that issued from my ankle, and I just cried.  Just sat there and cried.

Anyway... we got the ultrasound: no blood clot.  The only medical response was to suggest admission, though, again, there were no clear ideas about what that would entail.   The sun long set, we went home and tried to decompress.  The day was not a waste, in that I had learned -- been taught yet again -- that seeking help with a CRPS-related problem was most likely to be an exercise in futility and frustration.  The next morning, I woke in heart failure.

Which I successfully treated with loads o'lasix, and hours of slug-like rest.

Foot Guy and I get along now.  Of course, I only go to see him when a foot fracture is not improving.  We are very polite to each other, and have never discussed the heated exchanges of that hot summer day.  I have always wanted to know the content of the letter he wrote to Eric Carson, author of my CRPS.  I mean, really, what did he say?  "Ummm, Eric, old pal, are you aware that this woman has developed a whopping case of RSD?" Who knows? 

Yes, right.  I was telling you about the neurological pitfalls that plagued my journey from the bathroom back to bed last night.  Gosh, I wonder why that didn't keep my prose heightened and dedicated solely to the telling of such a fascinating tale!

I got as far as Dobby's red plastic water bowl.  Then came the wire from the wheelchair battery recharger, and the wheelchair itself.  The short version?  I had no directional control -- not for up, not for down, not for left, not for right.  Every directional thought or command was met with the wrong action by my legs/feet.  I managed to end up sitting in the wheelchair, cords wrapped around my right ankle, yelping from the pain of that contact.

I bent down to pick up the recharger and to free my foot.  I could not get my hands to cooperate.  I couldn't grip the cane handle.

This morning, I littered the kitchen with joyously tossed coffee grounds.  Then I thought it would be fun to strew kibble in seemingly random -- but really quite artful -- arcs and other geometrical designs.  Trying to arrange an appointment before the one scheduled for February, I inadvertently hung up on my neurologist's office when I dropped the phone.

My head is throbbing and my temp is over 101.

I have no idea where my legs are.  Fred is in need of my curative chicken soup (Yes, he is sick again, poor fellow) but do I dare pick up a knife or deal with boiling water? 

Thanks again for letting me vent.  Yes, I know it's my blog.  Still, this gets old and I am aware of that...

* PLEASE DON'T REPRODUCE MY PHOTOS.  UNFORTUNATELY, A PHOTO OF MY HANDS IS BEING CIRCULATED AS AN EXAMPLE OF UPPER BODY CRPS.  THERE ARE PLENTY OF PHOTOS AVAILABLE AND PROPERLY DOCUMENTED ON MEDICAL SITES DEDICATED TO CRPS/RSD.