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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"Cure RSD / CRPS" and Wave the Sage...

This is a low period for me, and for Fred, who is apparently worn out by me and my penchant for self-pity. This I know because last night, after telling him I felt, and please excuse my language, "like a worthless piece of shit," he turned away and said, scoffingly, "pity, pity, pity."

It was the second day in a row that I could not walk, not even from bed to bathroom, without several stops along the way (meaning every 3-5 feet) and a couple of "Hail Mary" grabs at furniture to remain upright.  The pain has been indescribable.  The depression -- describable, as mentioned above, but apparently something I'm not allowed to mention.

The only reason I have not committed suicide is my duty to Fred to leave him enough money that he will survive "in the manner to which he has become accustomed" -- almost drowning in poverty, but not quite.
As soon as I hit the mark, I'm gone.

This morning, I woke screaming.  After sublimating the natural reaction to this level of pain, I did the coffee thing, the care-for-the-animals thing, then the special-care-for-the-animals thing -- known as Dobby Time. Then I managed to get my legs back in the bed, struggled to sit upright, grabbed the computer, and checked to see if my new ACA Marketplace Health Insurance company had responded to my frantic emails.  Nope.

But YouTube notified me of a message from someone, so I surfed in that direction.  It involved a pitch for a CRPS cure, about which I could get the bare-boned information if I paid him $349 for his personal years of research into the disease, and the one (I think he says "one," but maybe it was "several.") research article available about the "cure" he found, and that the rest of the world has been ignoring.

People have become angry with me for reacting with skepticism to the cures they offer.  The group of doctors who wanted me to give myself Ketamine intravenously, at home, unmonitored, for $50 a week.  I could pretty much pick the dosage.  The pain management doctor who wanted to have "some ladies from my church" wrap me in herbs and bandages, and prayer.  The player of the singing crystal bowl who induced bronchospasm with all the sage bundles she burned over me.  The many nurse practitioners of Healing Touch.

Also worth mentioning are the times I was angry at being led along, or not meeting the criteria for treatment. Various clinical trials, a couple that I might have tried but was told by one of my doctors that he'd not treat me any longer if I did.  Implantable devices that I cannot try because of my history of chronic bone infection at sites of implanted prostheses. (Thanks very much, St. Joseph's Hospital of Atlanta and Doctors Eric Carson, Steven Sween, Leslie Kelman, and the nurses in the ICU in May of 2002)

So this morning, I just cannot handle another "gimme, gimme, trust me, trust me..." routine.  Here is the video, for those of you willing to (or desperate enough to) pay for information that is apparently readily available, but which we have all managed to overlook.

I managed a short nap after coffee (an idiosyncratic reaction?) and dreamed, once again, of being trapped in the elevator in one of the medical office buildings at SJHA with the aforementioned unethical Doctor Gods, an elevator that left me gasping because it was filled with the smoke of a sage bundle, and rushing to exit the cage of the elevator as soon as that prison slowed to stop at a floor, any floor, be it the entrance to Hell itself.

So, um, clearly I have issues.  Those doctors represent fraudulent medical treatment, more aptly put as "failure to diagnose and failure to treat," threats (very specific threats), improper treatment, bullying, lying, failure to report a Sentinel Event, and the ruination of my life.  I write that confident that the sentence is completely true and actually soft-peddles their roles in the reality of the first few years I had CRPS. The sage, my inability to breathe or speak?  That represents what I know now was my stupidity and extreme gullibility.  It represents the loss of my life's work as an educator, and the steady pay check with benefits that I enjoyed.

Sage smudging, from Estrella Magick

That ought to provide enough grains of salt for you to wade though... You're welcome.  Excuse the self-pity. Excuse the desire to OD on insulin, fentanyl, methadone, percocet, tizanidine.  Also, kindly overlook my catchy theme song of "Shoot me in the head / Shoot me in the head / Shoot me in the head / I'd be better off dead."  As Dylan said, "I'm a poet /  I know it /  Hope I don't blow it." At least, I *think* that's what he said. He's actually declined in my estimation as I've aged -- I tire of guessing who he wants me to guess him to be this year.  After spending so much time figuring out whom I am, I care less and less about his personas.

Love the music, though.

So here is Cure RSD / CRPS and his video, followed by the details he provided on YouTube, both uploaded yesterday.

Published on Jan 1, 2014In this video, I discuss a cure for RSD / CRPS (not Ketamine!) and my 13 years of chronic pain with the illness during which I saw over 100 doctors and "experts" who knew next to nothing and tried dozens of medications. I suffered from a case described by doctors as "extreme and severe". Finally, after months of desperate research I found the treatment which helps most of the people treated. It is not a crazy-go-it-alone therapy, but is documented in several studies and is carried out at most rheumatological university clinics in one western industrialized nation to cure this disease which by any standard for CRPS are high success rates -- but very, very few sufferers or doctors know about it. Stop taking pills for the pain. Try to get CURED. Watch this video to find out more and how you can get more information on this and possibly end your suffering and/or the suffering of someone you love. Until I have assembled a full information package and posted it for download, for more information, send an email to exoskeleton@gmx.de and title it, "RSD Cure". Please be prepared to make a $349 donation to my PayPal account to cover 13 years of my research into the problem of CRPS. We can also make arrangements for payment of $699 IF you feel the treatment helps you significantly after the fact. The total cost of the treatments at the university clinic were about $1100 - $2300. The treatments take about a week to carry out. A bed and breakfast in the area can be arranged 800 meters from the hospital for about $50 to $65 per night. If you are new to CRPS, this information will help lead you through the maze of information out there and give you proven good odds of returning to your old life with the most thoroughly studied but least well known treatment out there. This will get you a summary of the treatment options, history of the treatment, the info on the most recent study with the improved treatment method which now shows close to an unbelievable 100% double-blind, placebo controlled success rate, where to get it, even email addresses for doctors who perform the treatment, and two locations in Europe which do it. You will also get a list of links for the studies and information you need. I will be happy to have a short personal discussion with you about the problem and the treatment. One of my very good friends with the same disease has seen my rapid improvement, read the studies I collected, and he has already contacted the university I went to and bed and breakfast I stayed at and will soon be going for his own treatment at the hands of the same highly competent doctors who treated me. I am sure in 2 months he will be much, much better. Note: because of copyright laws, I cannot give you the actual studies, but I can give you their full names and tell you where to find them with links in the internet.

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too many words

in my previous post, i was unduly cavalier about my odd relatives.  my first electronic act upon getting home from the hospital friday evening was to jot down [or laboriously peck out on my lilliputian keyboard] an email to the best brother-unit a sister could wish to have. that's right, i found myself unleashing a week's worth of pent up emotion all over sweet Grader Boob -- the self-imposed and preferred nickname of my english professor sibling, forever wading his way through a swampy, gassy pool of purported essays and research papers.


he's been in the game a good 30 years, has Grader Boob, and still spends 45 careful minutes on 2-3 page bits of underclass erudition.  he provides the most helpful and attentive commentary these youthful writers are likely to ever receive. i'm not saying that 'cause he's my brother-unit;  i'm also saying that because his standards are not simply maintained over Lo, These Many Years, they are, if anything, more stringent.  it's a sign of hope for those of us who aren't as convinced of a cheery future based on what we witness in the classroom. 


you know, stuff like having your hip broken by a student because you were the only physical barrier to his escape from the police officer hot on his heels. and having your students steal your walker when you make it back to work after the hip replacement!  stuff like that.


yeah, i dunno why, but that large "instance" keeps coming back to haunt me and will always inform my assessment of today's yutes.


of course, that was my experience at the level of high school instruction.  there weren't, thank goodness, any corresponding moments of physical violence in my 19 years of university teaching.  


no, those years had other offerings designed to maintain a steady state of depression. 


you know, stuff like having college freshmen and sophomores assert that the crusades date from the early 1900s -- before the american civil war of the 1950s -- and after world war II, that awful conflict of the mid-nineteenth century.  this academic high point occurred during my oh-so-brief stint as a latin teacher.  decades of research in determining pedagogical best practices have shown that the intermingling of disciplines, in this case ancient history and classics*, leads to student confusion and decades of lower back pain.

* in case you were wondering just what sort of radical latin class i was conducting by my unreasonable expectation that tomorrow's leaders might see parallels between humanity's tedious insistence on holocausts in various guises across time... it was a freaking warm up exercise designed to seamlessly review a few expressions with bellum and to introduce a short essay assignment.  instead, my brain exploded.  for those of you interested, these chestnuts were to be the inspiration for those 2-3 sentence-long masterworks:

bella horrida bella  (Virgil)

bella detesta matribus (Horace)

bellum omnium in omnes

bellum domesticum 

Ibis redibis nunquam per bella peribis (Oracles of Dodona) [a teacher's favorite, this one]

honestly, i've no clue why my mind went on this bender but, as you know, the guiding philosophy here at elle est belle la seine la seine elle est belle is "whose blog is it, anyway?"


i blame everything on the nefarious influences of Grader Boob.  


has he made any suggestions to moi-même, as to how my writing might be improved?  yes.  one suggestion, repeatedly -- making me worry over the possibility of early onset dementia.


hmmm?  what?  oh... right!  "too many words."  

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hi boob,

i spent the week in the hospital and am in a foul mood.  

you have been warned.

it was awful but could have been much worse.  i had the headache from hell, nausea and vomiting, topped off with more of a fever than "normal." called my MDVIP go-to-guy doc last saturday, taking care not to phone until he'd had time to get home after temple.  even though he encourages patients to call whenever there's a real need, i hate messing with anyone's sabbath.  god might get pissed.  so go-to-guy answered on the second ring and informed me he had just arrived in barcelona, to which i replied, "but you can still call in a prescription, right?"  


[i came close to demanding why he had not been available six hours earlier, that being the time differential between tête de hergé and spain, but managed to hold my tongue.]


so that's why his partner, dr. k, was on call when i decided i couldn't take this particular constellation of symptoms any longer.. then dr. k's aunt up and died and he flew off  to new york, making the time differences for my doctors simply untenable -- fred put one watch on each wrist but that only made things worse. 


i booked passage on the queen mary, anxious to keep up with the jet-setters in a manner befitting my socio-economic realities. but due to partner-man's in-flight telephonic insistence, we ended up at st. jo's emergency room instead.


why, yes!  that *is* the very same hospital what gifted me with crps to begin with, by a well orchestrated Sentinel Event back in 2002. had i lost my mind, returning to the scene of their crime?  well, yes, i suppose i had lost my mind... to a mother of a headache (imagine me, whimpering while rocking back and forth, to and fro...) and several days of high fever and nausea.  he tricked me, that wily partner, into expecting just a bag or two of fluids and some cortef.  


they wouldn't release me, of course, and as i was being wisked around the corridors and back alleys of that infernal place,  i decided to keep an open mind and a closed mouth... 


...until i couldn't any longer.  i managed four whole days without a single smart-assed comment, without any hint of the fear for my life that emerges whenever i'm within a nautical mile of that place.  did the fact that i was under a gag order by their risk management department legal eagles assist me in holding my tongue?  nope.  forgot completely about it.  fred's eyes bugged out.


how am i to remember that the murderous staff there cannot be held in any way accountable for their crimes against humanity? let's review, darling boob:  pounding head, empty and spasming stomach, high heat, extreme pain -- much of that pain from the pre-existing crap for which they are largely responsible -- adrenal (and renal!) insufficiency, lupus, avascular necrosis, osteomyelitis, and a partridge in a pear tree.  i think four days was admirable.


i strongly suggested discharge home to the hospitalist who rounded this morning. the bottom line?  despite kidney and sinus infections that were piddly and refusing to grow in cultures (that's my leitmotif), the ID docs decided it was my left shoulder at fault and ordered a CT scan of the whole area -- head, left shoulder, kidneys, hips, the squatters in my estomac, etc.  they even seemed to have clear ideas of why the pus in my shoulder wouldn't grow in the lab -- blaming the phenom on one of two sort of ordinary bacteria that have become resistant to antibiotics. since i am immunosuppressed, these average-joe sorts of bugs can be a problem. not the zebras doctors have been chasing for the past three years, but good old pedestrian plow horses.   


so we were all anxious to get the CT results.  i actually entertained thoughts of getting cured of these accursed bone infections! drum roll, please... because radiology, despite discussing the areas to be scanned with me, despite the written orders, despite doing preliminary imaging to make sure all was fine... radiology reported that they failed to scan the left shoulder.  


remember the port i had put in some time in march, before the ketamine infusions?  well, it has never been accessible for blood draws.  fine for infusions, but not available for anything else.  [grrr.]  the nurses, in attempting to explain to ID why some labs were not done, blamed the confusion on a member of the "iv team" who was supposed to draw the blood from my port...  i may have, kind of, sort of, sat there like a silent lump while the lying liars lied.  


yes, scientific method remains at its finest at st.jo's;  the brainiacs are still at the wheel.  


the thing that sent me over the edge, however, was the damned rsd/crps.  


fred and i have tried every trick we can think of, from making cute little signs for the bed, distributing informational fliers, having doctors write entries in the chart,  putting notes on the door, even suggesting it as a great topic for an in-service, etc. 


all we are asking is that folks not touch my legs and ask before touching my hands.  we have never had a positive response.  tell a nurse (or doctor or phlebotomist or tech) not to touch and you engender, apparently, that very urge in them.  the unfailing pattern:

me:  please don't touch my legs.  thanks!

health care professional:  of course not! [pokes at feet in order to feel pedal pulses, grabs calves for some unknown reason]

me [from the ceiling]:  DON'T TOUCH MY FREAKING LEGS!

health care professional:  you don't have to get nasty.  all you have to do is tell me nicely, profderien. [hates me for the remainder of my stay]

common variations involve "oh, i didn't think you meant me" and "i can't help it if the stethoscope around my neck swings down and hits your feet."

very, very, very disturbing?  since the declaration by the state that their screwup in 2002 was a Sentinel Event?  i kind of thought they would know by now what CRPS *was*.  it was disheartening in the extreme to find only two doctors (the ER doc and an ID doc) and ONE nurse who knew that it is a central nervous system disorder involving severe pain, allodynia, movement disorders, etc. -- just, in general, what it is about.

everyone else said yes when i asked if they knew what crps/rsd was (i unpacked the acronyms for them as well).  these folks all proceeded to then do you know what, leaving me on the ceiling again...  i cried, not from the pain, but from pure sadness and frustration.  the doctor who was in charge kept telling me it was a combination connective tissue disorder and cellulitis.  she apparently wrote that in the chart and the nurses all thought it a great quote.

my favorite moment?  two nurses leaning over, their elbows propped on the the footboard of the bed, staring at my feet.  one of them has a big smile on her face, and keeps advancing her index finger toward my swollen, dark-purple and decaying right foot, saying, "i can't touch this, hmm?  what would happen? i seen this before, ms. profderien.  this here is cellulitis.  you got to keep it clean. what would happen if i touched it, hmmm? we need to scrub this foot." she actually winked at the nurse next to her.  yep, she's gonna wash off discoloration from lack of blood supply and i shall be cured by soap and water.  i confess:  i didn't bother with please or thank you, or if you don't mind... and went directly to cursing at her.

okay, i feel better now.  
i guess i let things build up a bit too much.
okay, so maybe tears are still running down my moon face.

the ID docs want me to see dr. d (ShoulderMan!) asap.  it just so happens that i had already made an appt for next week, because the shoulder was getting pretty awful.  the best advice, though, was "go where they know you, know crps, and until you get there here are some antibiotics, stay in bed, but come back to the ER for a fever of 100.5 or higher." 


at that moment, the tech came in to check my temp, and it was 100.7!  we all had a good chuckle and then i went straight home where i promptly threw my thermometer away.  really.  i did.

i wouldn't mind one bit being something of an ambassador for crps, because it is very odd and despite not being all that rare, is something rarely encountered by your average medico. i am, for instance, my MDVIP go-to-guy doctor's only crps patient in 30 years of practice.  so i had to become an expert -- a dread occupation -- in order to get any kind of decent care. now, of course, go-to-guy is a crps pro.  


but to discover that the hospital that compounded error upon error such that crps was the end result has not even taught the staff to recognize it during the nine years since the sentinel event... leaves me tired, depressed, destitute -- and angry.

so much so that my dear brother has to field another rabid communication in a litany of rabid communications.

fred has had it,  is very tired -- of me, of everything.  i don't blame him at all.  just wish i could just wish it all away.

let me know more about classes and your writers... are you enjoying the reprieve from freshmen? i wish you knew how good a teacher you are. 

love,

your sister-unit, the gimp

SENTINEL EVENT: “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.”

My apologies

Dear Readers, Friends, and Odd Family Members --

Well, that greeting sounded nice in my head... but I guess it is too full of assumptions.  Then, O Misery, I would have to explain those assumptions, and would lose all my "Readers," most of my "Friends," and definitely the majority of those oddities known as blood relations.

So I shall keep it brief.

I just got released from the hospital, an unexpected stay, to say the least.  Nothing was accomplished and despite days of truly dubious treatment, I am home feeling about as bad as I did seven days ago, when the detritus hit the fan.

O, how I love the Manor and all of its art and tapestries, its bizarre twists and turns and unexpected staircases.
O, how I love Fred.
O, how I adore the Domestic Staff, whether genetically pre-determined as Marlinspike Hall servants or whether servants by the exercise of good old fashioned Free Will!
O, how I prefer The Big Round Bed with my Big Old Quilts, washed into soft submission years ago.
O, how I missed the Feline Remnant... all three demanded immediate brushing and kisses.  It's nice to feel needed, no matter how that need comes.

But I did pick a nice title, I think.  I do apologize -- for neglecting visitors to elle est belle la seine la seine elle est belle, and neglecting people I care about, the two sometimes not being mutually exclusive.

At least I can promise that my time spent attached to i.v. solutions and at the mercy of medicos was not a total waste.  I feel an onslaught of blog posts coming on...

There and Back Again

We did it!  We made it!  Fred and I, with the assistance of the very good-natured Ruby the Honda CR-V, arrived at the oncology infusion clinic almost on time!  I'll knock off the use of these annoying exclamation marks now!

The next visit will be much easier, as I filled out a novella of forms and produced redundancies of documentation that were then both scanned into the electronic medical record *and* photocopied.  Since they had so well established the theme of overabundance, the unit clerk supplemented the scanned and photocopied photo ID with an impromptu Polaroid of my cushingoid charms. So much for that pesky rumor about how an Electronic Medical Record garners savings of money and time.

It looked to me like three different records were being compiled:  a shorthand cheat sheet for use by the nurses right then and there; an electronic collection of my data; and an old fashioned paper chart. 

Once that was done, along with signing myriad permissions to bill, resuscitate, and transfuse, we were escorted into one of those huge, pseudo-cozy rooms littered with options to lay down, recline or rock.  I was still in the process of transferring from my wheelchair to the recliner when a clipboard began hovering before my eyes, along with the nub of a pencil.

"You'd best get started on this questionnaire.  It takes a while."

I was still filling it out when we left, which is not as much of an impossibility as it might sound.

The Head Ketamine Dood over at the Catastrophic Hospital had insisted I get this damned port implanted in my chest and connected with that major vessel called the subclavian. "I'll allow you to get the first treatment via a standard i.v. but if you show up for the second one without an implanted port, I will not treat you.  You need a port anyway.  You'll thank me for it."

You would have done what my doctors and I did -- move heaven and earth to arrange a surgical consult, pre-admission testing, and surgery itself -- all while dealing with the strange new world of subanesthetic ketamine infusions, and all within seven days.

That casual requirement of his cost roughly $13,000.00. 

I found the BardPort Titanium Implant for sale on eBay for $75.00 -- under the Buy It Now option.  Shipping added a hefty $11.95.

Fred and I are avid Do-It-YourSelfers, and we figure we could have handled the whole implantation thing with a minimum of fuss and a modicum of sterility for about $200 bucks.  That doesn't include antibiotics and Infectious Disease guidance.

Anyway (my preferred segue), after finally getting ourselves comfortably plopped in cushy seating, and accessorized with another ream of paperwork, I figured we had come to the easy part.  The staff had other plans, though, and insisted on taking vital signs.

On the off chance that my temperature, pulse, oxygen saturation, and blood pressure would turn out to be within shouting distance of normal, I abstained from my usual preface explaining why my numbers would probably be a bit off.  It was early in the morning, how bad could things be?

Right.

Phone calls, facsimiles, and expert opinions were made and sought, each costing me something, I'm sure, and wasting more of the earth's resources as old charts were pulled and ink was jotted and blotted on Big Pharma scratch pads, gifts from Pfohnzon and MerZenOtt. 

Resources.  Lots and lots of resources, human, natural, and electronic, all to flush and heparinize a port.

We finally determined that I was not likely to die this morning, I tidied up the assertions on my questionnaire (SEX? Yes), the nurse pulled the privacy drape around our little triad of chairs, and we got started...

Right after she finished scanning my plastic armband and each of the supplies, from 20 gauge non-coring needles (of the wrong length) to the 5 cc syringe of saline (we ended up needing four of them). 

Fred and I had developed a skit designed to so impress and delight the nurses that they'd agree to train us in the sterile procedure so that we could do it at home in the future.  We didn't make it out of the witty prologue before our nurse -- still desperately scanning -- panned the performance. 

"You can't do this at home.  You just can't," she explained.

Fred waited a beat and said, "But the lobotomy went off without a hitch!"

You could hear the gurgling lungs of the jaundiced woman across the room from us, it was that quiet.  Fred promptly buried his nose in an Illustrated Giant Print New Testament ("Easy on the Eyes!").

Gloved and masked, the nurse made quick work of prepping the skin, and inserted the needle with confidence.  She attached the syringe with 5 cc of saline, pulling back to check for a blood return... and there wasn't one.  I knew there would not be one but had decided against wowing her with my prognostications.  Besides, it could happen.  It could.  One day, I will have a PICC or even this same port, and there will be a blood return.

I believe.

I did let her know that I was a "saline taster," and that I had not tasted the distinctive metallic remnants after the injection.  She countered with "but I know it's in there, I could feel the needle hit the back of the port."

I said, "I'm just sayin'.  You know?"

That's how we ended up needing extra syringes.  Which is why she had to do more scanning.  Eventually, we found common ground.  I tasted the saline afterglow and she was confident of her placement, even without a blood return.  "Ha!" she crowed.

Fred, who was paying attention despite the red-lettered Testament, took that as a cue to try again, so he sat up and yelled in her ear:  "But the lobotomy went off without a hitch!"

It's tough to read a face covered with a mask.

She slapped a band aid on me, disposed of her sharps, and threatened to introduce some sort of medical Drano into the port when I returned in 4-6 weeks.  "Next time?  There will be a blood return.  Know what I mean?"

She cut off my plastic ID bracelet, made a few notations on the back of some gauze packaging.

As we wove our way out of what was now a crowded room, I tried to smile and nod at the pretty sad looking slew of cancer patients being infused with poison, and Fred wondered, in a loud and unfocused sort of way, if they gave out tokens to cover parking expenses.

Like I said at the beginning:  We did it, we made it, and next time will be much easier.

Courtesy of BARD Nordic

The Checklist: Pause and Reflection... FAIL!

As part of the eternal quest to identify the nasty pathogen causing infection and inflammation in my left shoulder (and hip), I underwent an aspiration of that shoulder joint last Monday.  The hospital radiologist used dye and a fluoroscope to guide the insertion of the needle.  A nurse and a radiology tech were there to assist him, as there were beaucoup bottles and slides that needed to be prepared once he managed to get a sample.

So there we were, the four of us.

Before getting started, we participated in a strange and wonderful ritual -- a Procedure Pause and Verification of Site Ceremony.  For short:  The Checklist, an adventure in Pause and Reflection.

Essentially, the head medico calls out for everyone's attention, then tediously goes over who the patient is and what procedure is to be performed and on what body part.  The site is marked and signed by the doc, and everyone is in accord about whether it is the north leg or the south toenail of the eastern ankle that is to be poked, cut, or otherwise handled and abused.

In my case, despite a desperate attempt on my part to shave a decade off of my date of birth, we all concurred that we were there to stick a large-bore needle into my left shoulder in an attempt to draw off some nasty fluid from which we hoped to farm some identifiable nasty bugs.  The radiologist signed my shoulder with a flourish, and we were off!

Having experienced the impact of medical errors, I did not find the Pause or the List or the Purposeful Redundancy to be any kind of imposition.  Quite the contrary -- I was impressed.  I even told a few people about it... Folks who know the extent to which I have suffered due to medical errors, and the attempt to cover up those errors.

Of course, I spoke with  Brother-Unit Grader Boob -- at some point in the 1990s, he supplemented his teaching salary by working at a hospital near his university -- a hospital most known for its surgical errors, by which I mean the amputation of THE WRONG LEG.  In the lingo:  wrong-side surgery.

What a horrible thing to happen!  And how upsetting when it happened again!  Yes, that was the reigning attitude -- the mistakes just somehow "happened." In my sad experience, I learned much about verbs in the passive, about hospital-acquired booboos.  [In one of the more sinister conversations Fred and I enjoyed during a riotous stay at Saint Joseph's Hospital of Atlanta back in 2002, the retort to our query regarding what, if anything, the orthopods planned to do about my "hospital-acquired" tibia fracture was:  "Oh.  So you know about that?" {with a beautifully arched eyebrow} It just made us mildly curious as to what we might NOT know, you know?  Beyond the initial medication owie, concussion, internal bleeding, and fractured ankle -- with CRPS onset within hours -- had we missed anything besides this tibial oopsie?]

As a Gimp, the attitude in play in these instances horrifies and pisses me off no end:  Well, this person already knows pain and disability, so it is no big deal that a little more pain and disability might be added to their lot.  They probably won't even notice!  Of that 1995 BooBoo, a NYTimes article noted:

"Some doctors who appeared as witnesses said that the leg Dr. Sanchez removed was in such poor shape that it would probably have been amputated in the future." 

What a pompous, convoluted, ass-saving and totally deflective (better than Teflon!) attitude! 

Okay, so I may have given some considerable prior thought to the impact such attitudes can have.

Back to our story!

Yes, it was an impressive display, last Monday, inside a tiny radiology suite.  So simple a thing as a pause and basic review of identities and of left or of right -- what a marvelous idea! 

So there I was this afternoon, getting an incredible amount of Face Time with a noted Infectious Disease Specialist, and we were reviewing the goings-on of the last few years.  Given the back-and-forth rhythm of the orthopedic surgeries I underwent, it was difficult to stay on top of which shoulder did what, when -- even in a fairly ordered conversation.  The ID Dood and I chuckled over the note sent by my Go-To-Guy, which clearly stated that the present culprit, in terms of pain and diminishing range o' motion... was my RIGHT arm. 

Chuckle, chuckle.

Good-natured guffaw!

He said, "Well, with so many shoulder surgeries, it is easy to get confused."  Spurfle!

Then ID Dood called the lab to check on culture growth from last week's aspiration.  So he's on the phone, all Chatty-Kathy, with some minion when his eyes go into Serious Squint.  He had asked for the results of my "left shoulder aspirate," identifying me by name and date of birth.  Lab Minion, however, informed him that there was no left shoulder aspirate being cultured.  There was, however, a sample from...

{YOU GUESSED IT!}

...a RIGHT shoulder aspiration!

So congratulations on the Careful Checklist, the Procedure Pause,the Reflection and the Verification of Site and all -- but if you are going to then mislabel your biopsy or culture samples, you are still chopping yourself off at the knees.

So to speak.

I was  making light of it as Fred and I climbed into Ruby, the Honda CRV, and loaded the power chair on Bruno's Lift, when he said:  "Yeah, but imagine...  you are brought into the ED unconscious and all they get is your name.  They plug that in and see that you have had a shitload of tests done on your RIGHT shoulder.  They can tell you have a raging infection somewhere... and that must be it -- your RIGHT freaking shoulder.  So they amputate..." Okay, so his scenario kind of fell apart at that point, but you get his drift.

The possibilities running through my mind were less extreme but equally catastrophic.  What if such an error had occurred before, but without such an obliging lab technician on the other end of the telephone?  What if, say, following one of the five surgeries on my right shoulder, SuperShoulderMan rang up to inquire about intraoperative cultures from said shoulder, only to be told something slippery like "no report of growth," when in actuality there was growth, but in a specimen mislabeled as left?  Hmm?  Before you get all pissy and dismissive, ask yourself if it could happen...

I still feel they are to be congratulated for these steps to stop medical error.  They just need to tweak a few straggling details -- like somehow including a review of labels on lab forms on the checklist.  Or something.