Showing posts with label Mad Mad Medicos. Show all posts
Showing posts with label Mad Mad Medicos. Show all posts

Monday, February 15, 2010

Re-post -- Medical Bloggers: Touche Pas A Mon Pote!

J'ai passé une nuit blanche... during which I found myself missing Nurse K and her now defunct blog, CrassPollination. I hope that it, like the Phoenix, will rise from the ashes, or at least become available in some other format. Ummm, like a book -- that'd be cool.

Anyway, that led to laughing at my various references to her fine anecdotes, and my virgin shock at the âpre, biting depictions of the dread Problem Patients and the manner in which the well-raised, polite ED nurse reacts to them.

I don't know exactly why my dander was all up, back in November of 2008. By then, I had had the second of six surgeries, was not able to sleep at all (to the point of true toxicity), and was in the kind of pain that births dreams of loaded guns. I also had really just started to read medical blogs with any sort of attention. Okay, yes, I also had begun to hear the dreaded "ewww, you're a complicated patient, aren't you?" Add to that that I was a licensed, charter member of the Annoying Chronic Paineurs, and yeah, I might have been a tad bit touchy.


A hard time, to be sure, but I'm not the kind of person to project my issues onto someone else.

Cough.

Anyway, when I am feeling all righteous and stern, these medicos piss me off. When I am thinking straight? I am oh-so-grateful for each and every one.

*In deference to my broken leg, I am not going to make my damned fingers waltz around to see if the links in this repost remain in effect, and accurate. Do it your own self!

Cough.
Sniff.




"Touche pas..." has long been a favorite saying (and message) of mine. Indeed, I've always wanted the T-shirt. But how to explain to someone unfamiliar with both the situation and the language what it means? I had never googled it -- oh, the amazing act of googling! Anyway, I found this short passage, which does a pretty nice job of it (though the lack of an accent puzzles me -- why get something almost right?):

A Powerful Political/Social Sign: "touche pas a mon pote"
One of my favorite social-change campaigns of all time came to my attention recently when I saw it in the background of a film shot in Paris.

It's the ubiquitous yellow hand of the French anti-racisim organization SOS Racisme, which travels the French visual landscape coupled with the phrase "touche pas a mon pote," which translates roughly as "don't mess with my buddy."

The straight-ahead everyday slang of the phrase in French --- it's literally what one would say in a street confrontation --- and the powerful yellow hand have always been a model for me of really understanding both the potential audience for a social change initiative and the moment of decision the designer/strategist is trying to influence. This is what you say to protect a friend, and the implied strength-in-numbers and the sense that "we are watching you" and holding you up to social shame makes the slogan an absolutely brilliant piece of writing.

In an earlier post I quoted science writer Daniel Goleman on research showing that the more someone is perceived to be "like me" the more our empathic brain circuits are activated.



My name is Retired Educator, and I am addicted to medical blogs. (Hi, Retired Educator!)



I am one of those barely-there people. If you sneak a peek behind La Belle Bianca Castafiore's considerable operatic girth, there I am, ensconced in this drafty, ancient manor with my darling, but essentially clueless, Fred, and with the real brains behind the outfit -- the Felines.








Once upon a time, I was -- sniff -- a rising star; More importantly, I had considerable fame as a clothes hound and shoe afficianado. Chronic illness and pretty severe daily pain has reduced me to unknown status, and my wardrobe to oversized organic cottons, with the occasional silk and linen blend, all bearing the satanic marks of elastic and screeching velcro closures.









Sleeping became difficult, and it is not an exaggeration to say that the rising sun became an emblem of survival. The computer, and its incredible access to almost anything one can dream up, was a great tool to wield in the middle of those long nights. I was a member of several online communities of people who were also in pain, who were suffering from the same acronyms. Boy... was that depressing.









One 3 am (apparently, the witching hour), I was searching for information on a medical test that I was about to undergo -- something that doctors just adore -- and my googling returned a hit that turned out to be transformative. I had never before ventured into the blogosphere, thinking it a "place" for only the Smarmiest of Smarty Pants. I was ill-prepared for the pleasant shock of reading this acerbic nurse's blog. It beat the hell out of the navel-gazing and shrill cheerleading of the online support groups.

And so it was that Nurse K's blog, Crass-Pollination: An ER blog (ED if you're... oh, never mind), was the first medical blog I ever read. Medical blogs helped me get through some of the long nights that were already medically oriented, anyway -- and intense. It's much better to laugh than to cry -- and infinitely better to snort-laugh than to weakly titter. Nurse K supplied lots of those snorts, although I now regularly read a good dozen other medical blogs that are equally entertaining and informing.







These medicos are intelligent and creative people, turns out. For whatever reason, blogs maintained by Other Liberal Educators proved... unsatisfying. And so, I was hooked.

I never expected to learn some of the things that I have, however -- mostly things pertaining to intense professional frustration. There are a host of other nominatives that I sometimes would like to apply but won't. Probably. Well, maybe. We'll see. As I said way back in the beginning, whose blog is it anyway? That snappy-snippy attitude, and that respect, is due every blogger. Well, not every blogger. Well, maybe. We'll see. Cela dépend.

(Please recall: I am the prof who declares that "Yes, there *are* stupid questions, just as there *are* stupid students. That said, I never doubt my own ability to salvage all students and most questions. It is called getting to the heart of the matter.)

It turns out that learning what particularly challenges [blogging] nurses, doctors, and other health-related workers has impacted my interactions with those self-same people in my life. In some ways, it has been marvelously helpful -- mostly, it encourages me not to blather on and on, as I tend to do when not feeling well. I need to be an efficient, honest, and straightforward patient, since I expect as much from the people trying to help me. I now don't provide much in the way of information that is not pertinent to whatever the specific situation might be, and I do not ask for things that I might have in the past (mostly creature comforts -- a blanket, a pillow -- but also that meal that never came, or the medication that never arrived).

Unfortunately, the thing I learned most was fear of these people. Before anyone flies into some sort of fury-driven arrhythmia, let me qualify that use of the word "fear." It is the same fear that I experience when driving near speeding, lane-hogging, long distance rigs on the highway-- and it feels like a prudent response.

These [blogging] doctors, nurses, et al, are not malevolent, and they would not purposefully hurt anyone in a lasting way. I believe, however, that a small minority *does* intentionally inflict temporary pain -- they confess it, and they confess it with a certain amount of very disturbing pride. Of course, there will be a complete disavowal -- instead, my lack of humor will be suspect, or my intellect (more likely my worldliness, or common sense, saying, "Jane, you ignorant slut," to which I can only say, "Dan, you pompous ass...") Shoot, we all recognize the urge and understand it -- but acting on it? Oh, what are the words? Hmmm. Oh, yes: wrong and amoral. Criminal?

Faced with an annoying waste of time that is a woman faking a seizure, the response is:
I head to the cabinet that holds the STAT 16 Fr Punitive Foley Catheter, and Nurse Tinkerbell heads for the cabinet that holds the STAT 16g Punitive IV Catheter.It's called a "16 Squared", and it's the first line treatment for ODs and fake seizures.

[The whole entry itself is totally hilarious, and I am a great fan of this particular blog.]

The punitive foley and i.v. catheter are tame examples, really. Maybe what is most disturbing is that I have no difficulty believing that this sort of thing, and worse, happens. I guess it is not supposed to matter because no lasting damage is done, or the patient is presumed too stupid or "crayzee" to ever know.

And, it must be said, in this election time, that there are systemic cruelties that no human can match -- the idiotic aspects of EMTALA law, the medication too expensive to be had, the follow-up care that just won't happen, the dumping that has never really stopped (go ahead, challenge me on that, I dare you. I double-dare you. I will name names!).




Abuses? Good God, I don't know how health care professionals (I am thinking primarily of the ER/ED environment) maintain any semblance of a good attitude in the face of all the social ills that masquerade as physical or mental health emergencies. I imagine that almost everyone they see is at least a dual diagnosis. Despite this terrible complexity, they are called on to treat the presenting symptoms, the presenting problem -- but the background of addiction or some other chronic disease invariably creeps in to complicate the visit. It takes a lot of disciplined skill to keep the "emergency" visit on an "emergency" track.

In the blogs about emergency medicine, you will read stories of women wanting pregnancy tests or ultrasounds at 3 am -- after arriving via ambulance, no less -- and tales of homeless people who want something to eat (a sammich) and a place to sleep. Drug-seekers are an enormous drag on the general goodwill and dealing with them daily may well be enough to tarnish even the finest of attitudes. These folks are usually allergic to all medicine except opiates, and attempt to steer their treatment straight toward the drug they desire. WhiteCoat, who rants at another insightful and entertaining blog spot, tells a story respectful of all comers: "Drug Seekers Suck." There are *countless* number of blogged posts generated by the frustration of dealing with drug-seekers -- would that that provided something beyond temporary catharsis.



Most professionals worth their salt know frustration -- if they don't, they've chosen a niche of safety, more power to them. What said professional chooses to do with that frustration, however, speaks volumes.

Moi? In the built-in cabinets of the Ivory Tower, I kept a stash of amazing weaponry to throw at students, although chalk would always do, in a pinch. I converted every departmental or university-wide insanity into a reactive act of pique, usually in the form of a scathing letter -- or, if the matter were truly weighty, a collective effort with colleagues. Maybe a sit-in, or a huffy petition. When the problems were "emergent," so was my response. When the issues were more some systemic form of illness, working toward a cure required much, required deep study, required patience. Of course, I understand that an academic or intellectual emergency does not really matter, in that grand scheme of things, in, cough, the order of things. Except for two specific instances*, life itself was never in question -- although divestiture from South Africa did seem to matter... Blogging medical professionals, par contre, exist within a world of pain walled off from the rest of us. Not unlike an abscess. (Sorry, that came unbidden! But, really, how true! A good incision and drainage might be just what a doctor might order...)



And like the whining teenager, there's no way [we] could ever understand.



It must be very wearing to deal with the people who are inappropriately demanding the considerable medical talents of an emergency department. You don't have to follow many medical blogs before the problem list is set: people on Medicaid, the uninsured, drug-seekers, people with chronic pain, fibromyalgia, headache, homeless people, alcoholics, addicts, and general dirtbags who don't appear sufficiently grateful for the ministrations received. Just looking at the list is enough to make *me* sigh with anticipated fatigue and frustration. What can I say? I am a real fan of the genre and of the brave people driving the narration.



Then, it happened. Nurse K put me on the list. Oy! There it was: reflex sympathetic dystrophy (the inaccuracy of the name continues to be perpetuated by both sufferers and medicos alike -- nevermind that sympathetically maintained pain is not necessary to the condition, or that it does not include causalgia -- because CRPS is just too unwieldy to say!)



Anyway, this is the entrapment post in question:

CRAYZEE NOS
52 y.o. female with a past medical history of something like:
Fibromyalgia, chronic pain in other conditions, anxiety, depression, panic disorder, bipolar II, hyperventilation syndrome, cyclical vomiting, restless leg syndrome, reflex sympathetic dystrophy,IBS, endometriosis, L4-L5 "bulging disk", bunionectomy
AND
CABG 6 months ago....

...presents with "chest tightening". In the last month alone, she's had five negative chest-related work-ups including a clear cardiac cath.

Geez, Crayzee, why'd you have to have that CABG on there? Now we have to treat you like a real patient.



As part of the banter that appeared in the comment section following the post, Nurse K had occasion to write: I think all crayzee, anxiety-mediated diseases and "pain out of proportion to exam" complaints should just be lumped together under this ICD-9 code.



I often wondered how people with fibromyalgia felt when they were under attack. Now I was in the same position, and it pissed me off.



For all of five minutes! For what use is anger in the face of ignorance? And since stamping and stomping ouT ignorance has been the calling of my life... surely this would qualify as one of those euphemistic "teaching opportunities"!



Well, no. I don't have the energy or -- after that terribly uncomfortable aforementioned five minutes -- the desire. No, once again I come away convinced that these people are dangerous (and I hear the explanatory retort of 'we are just venting... we're professionals but we are also only human... we'd never say these things to patients or act on them...').



How much do you think it would blow these med bloggers minds to learn that they are teaching the public to second guess and seriously doubt their capacity for satisfactory treatment and diagnosis?



Of course it must be reiterated that the offending, offensive bloggers are a small minority, and I wish I were less thin-skinned, more able to "consider the source." Shoot -- it is illuminating just to remember the traits likely to a blogger to begin with! There is a need to be right, a desire to pontificate, a hope to be known -- just as there is knowledge to share, experiences to detail, and much fun to be had. And so it is that I remain enamoured of these talented people and the incredible tales of humanity they have to share, and wish the medical bloggers the best.



But always remember, and never forget: Touche pas à mon pote!



*Two students of mine, both Freshmen, turned in suicide notes as homework, and in so doing, cemented my rapid-turnover grading habit forever. Thankfully, both students lived; Sadly, they both had to drop out of college, though I am sure they returned -- both were phenomenally gifted.

Saturday, May 23, 2009

When I find myself in times of trouble...

The thing is, it ought to boggle the mind, but it doesn't anymore. It made me laugh, that's about the extent of my oh-so-shocked reaction.

If you've been paying attention, you know that The Fredster and I have been loading up Ms. Ruby the CR-V a couple of times a week and heading down to the Infectious Disease Dood's Place, just for kicks. And once there, well, it would be rude to donate blood and run, so we usually stay a polite few-to-six hours.

We're almost family, at this point. We've witnessed firings and hirings, flub-ups and triumphs, all from the comfort of the Infusion Center. We even watched President Obama's inauguration there, a crowd of doctors and nurses, aides and techs, secretaries and delivery folk.

Fred even has an intense and personal relationship with their chairs... I think that he sleeps, these days, better when ensconced therein than at home.

Even if you haven't paid attention, you know that I've been feeling increasingly like crapola since my last hospitalization and requisite surgery to replace one clunky shoulder spacer with another, as signs of infection in the joint/humerus continue. See? Give me the slightest opening and I feel compelled to bitch and moan, loudly, and with great feeling. (It's not my fault. I'm sorry.)

The response chez the ID folks has been to steadily urge me to contact my orthopedic surgeon, which I was loathe to do, since Dr. ShoulderMan's response tends to be a surgical one (crazy, huh?). But I finally did contact him yesterday, through his nurse and clinical assistant -- via email.

The response?

"I just spoke to Dr. [ShoulderMan] and he wants you to contact your infectious disease dr. I am so sorry you aren’t feeling good. Let me know what the Infectious Disease dr. says."

MwaaaHaaaaHaaa!

Bless her bones, she is wonderful, as are the surgeon and the PA. I don't think it is avoidance or "the run around." I think they're right, actually. The orthopods have been working like crazy to stay ahead of the infections and to give me a functional skeleton. It may be something of an overstatement, but not in my present frame of mind -- I think they've saved my life a few times over.

The ID folks, on the other hand, have had the luxury of treating me as if I were an intellectual point of dry debate. Many is the time I've been tempted to call out: "Point of order! Point of order!"

We cannot keep doing surgery after surgery -- the risks are clearly too great.

Anyway... I don't know what I am supposed to do. My "concierge" doc, The Boutiqueur, has to stay somewhat on the sidelines, as he doesn't have privileges at the hospital in question -- most of his work and his colleagues are far across town. He has maintained a close telephone connection with everyone and sees me about once a month. But what can he do for me, in this highly specialized situation?

I guess I will keep taking my meds, showing up at my appointments, gritting my teeth through this pain, sweating through these fevers, hooking up to these vancomycin medicine balls, lusting for sleep.

Because who knows where I am supposed to find relief, or go for help when in trouble?

Mwa!
Ha.
Ha?

Hey, maybe this is one of the twisted ways people end up in the ED/ER, where their presence is, predictably, maligned...

As my stepmother used to say: "There ought to be a law!"

Friday, May 1, 2009

Be/Loved


Hello, Dedicated Reader Base!


I was discharged from the hospital yesterday afternoon, to the great relief of everyone involved, particularly the hospitalists and nurses. When I am a little stronger, a post on hospitalists and certain types of RN will be forthcoming. I am pretty sure that the three hospitalists (one an intensive care hospitalist, one a pulmonologist, one a whiz-girl at internal medicine) were not "Happy." And I am positive that Happy the Hospitalist (The Happy Hospitalist) would not recognize himself in the performance of these particular three colleagues.


Anyway, the short version:


Surgery went well, although we failed in our goal of putting in a full shoulder prosthesis because the orthopedic surgeon found more infection... that continues to *not* grow in petri dishes. Later that night, I twice went into what we will call respiratory distress -- O2 sats dropped from the low 90s to the 30s within 5 seconds. I learned the meaning of gratitude at that moment, because my nurse happened to have just walked in the room. I mean, being on continuous monitoring doesn't do a whole heck of a lot of good if no one is watching! She stuck to me like glue until a Super-Duper Respiratory Therapist arrived, who then rescued me a second time. We were on our way to Intensive Care before the third episode even had a chance. I don't remember the third go 'round, anyway, as I was, if you can believe these medical types, "obtunded," and they proceeded to tube and then attach moi to a vent.


Yadda yadda -- I'll spare 'ya. [EEGs, CT scans, MRIs, echos, blood sugars and more!]


After some mis / management -- that wasn't all that big a deal, so long as you weren't the patient -- and a few days time, I am home. With the infection still blooming, and the explanations still lacking. We're doing i.v. vancomycin through the PICC line again.


The Poor Fredster. He is sleeping in this morning, and I am so glad. He is lovely, have I told you?

Thursday, March 5, 2009

Finally -- Notable Improvement

My labs from yesterday point to a big improvement: CRP 43.2 , WBC 11.9, and a normal sed rate. Rah!

I didn't ask about any of the other numbers.

Pain levels are effingly high but -- in the context of these wonderful numbers -- who cares? Okay, I care. A lot. My behavior is out of line, has been for a number of days, directly related to pain -- although anyone with a brain knows that behavior is nothing but a string of choices.

I am being self-indulgent and making poor choices.

I had no fever yesterday, have beaucoup today. I actually feel slightly better with a fever. Go figure. Marmy and Sam-I-Am have just been caught with their paws in the pizza pie. Uh-oh.

[Some of this pain ought to be diminishing now that I know how little I was/am supposed to be using/moving my right shoulder/arm. How was I supposed to deduce a limit of 90 and 10 degrees in forward and lateral movement from the simple exhortation to "baby that arm"? This is what results from experiencing too many unusual surgeries with unusual post-op instructions -- I completely forget how to treat a "normal" shoulder replacement.]

There's little room to describe it otherwise: we had a thoroughly rotten time of it yesterday. The day before had also been long -- at the orthopedic surgeon's place. I started out the day tired -- sleep, none. We got there five minutes late but no problem because the Infectious Disease office had no record of my appointment, despite the fact that I go in every Wednesday, and had chatted with the PA on the phone last Thursday about rechecking the labs and continuing with the daptomycin instead of switching to zyvox. I made the appointment as we exited last week, else it wouldn't have been entered in my PDA, and not at a 2 o'clock time, either -- we usually do 11 am or 1 pm. Anyway, so we sat in the waiting area for two hours. Why, when it was their error, were we punished? The nurses even were snotty -- as if I was the one who forgot to register the appointment. I didn't get to see the doc -- waited all that time just to get the PICC dressing changed and labs drawn.

Lots of time in the room with the comfy chairs -- Fred sleeps through my hellish time with Sex-Addicted Nurse Gossipmeister.

That would be the nutty nurse who does the sterile procedures and coaxes blood out of recalcitrant ports. After a gaunt and clearly ill little old lady -- all of 4'10" -- tottered out on some amazing patent leather stilettos, wrapped up in a mink stole, she launched into a diatribe about the emotional guilt that is behind most cancer diagnoses. On and on she went, talking about how faith could cure but only iffen you wanted it, only iffen you had true faith... Until I blew up in her face. She gave a typical asshole response: i'm just sayin' followed by whatever topped off by yawn. I believe those phrases are claim to a policy of nuclear non-proliferation.

or something.
i'm just sayin'.
yawn.
whatever.
meh.

So she and I, we did not start out well. I don't know why I am compelled to tell truthes that don't need telling when I am hurting, and/or a tad pissed off -- it is like there is no room for anything else. Finally ushered back to the infusion area, she crows, "Looks like you had to wait a while! That's what happens! Well, you know, everything happens for a reason, don't you think [hum hum hum...]? The Lord is gooooood! Amen!"
[i break out in what is technically known as ick-hives. that'd be ick-inspired bumpy red itchy hives from all the ambient ickiness. in this case, pseudo-religious ick. ick!

marmy, what do you think? "*ack*-*ack*-*ack*"

right on, marmy!]


"No, I don't think. I hate that expression. Everything does not happen for a reason. That's ridiculous."

Talk about raining on someone's innocent, if clueless and often intentionally cruel, parade.

Good thing she didn't spout off about God opening windows when doors are slamming the hell shut. In mysterious ways and all. I'm just sayin'.

By the time we made it through rush hour traffic and got home, my right leg was double its normal exaggerated size and bright boiled-lobster red. The left was not so bad, but also had some bright red spots among its traditional purple hue. A few hours later was when the pain went ballistic, and hasn't let up since. The swelling and color are both better today, heading to status quo. Hopefully, my pain levels will follow suit.

I didn't take lasix, though that's likely what The Boutiqueur would have suggested (I take 40 mg prn). Why not? It seems a weird thing to do when the problem is mostly one-sided, that is, my left side wasn't nearly as edematous as the walrus-like right side.

Sitting on the toilet, looking at my swollen misshapen weirdly-colored legs, I was disgusted and could not and cannot imagine how anyone else would or could react with less of a serious gag reflex. It wouldn't be enough to take down all mirrors.

I would need to put my eyes out, too. Remember, though, to do it *last* as taking down the mirrors might require minimal vision.

Do 100 words on the moral dilemma: Shall I put his eyes out, too? Would the threat of having their eyes removed keep people at bay, keep them out of my cave?

It hurts awfully to try and stand, and the thought of the many trips to the bathroom, after furosemide, was daunting. But my hands are very puffy, too -- maybe I will rethink that decision -- tomorrow morning. Never add lasix to your regimen at night!

The Fredster and I are not doing well. It is mostly my fault. I mean, just read how I was treating Ms. "Holistic" Guess-Who-I-Slept-With-Last-Week Nursey. Yes, she regales me with her sexual escapades and there is this Bizarro Dr. Laura persona in me that creeps out when she does, wanting to say things like: you haven't even gotten your divorce yet and you have three young daughters who must be wondering what the hell has happened to their world...


Every week I explain to her that my arm shouldn't be rotated the way she likes to position it -- and week after week she nods in understanding, rotates it anyway, and then spouts a word of wisdom like, "They ought to do sumpthin' about that. Tsk. Tsk."

Right now I want to throw something at Fred. He plopped on the bed with a couple a'slices of pizza pie, grabbed the remote, changed the channel, then said, you weren't watching the news, were you? click click click

But, hey, how about them labs, bay-bee?

Tuesday, December 30, 2008

The Scream


Munch is one of those artists whose work you want to grace every room -- they have such a welcoming, warming effect. Certainly, waking up to one flashing in the middle of the night, backlit by, say, a lightening strike, is an illuminating experience.


So, it's almost official. German Expressionism has stomped all over the schmalzy poppy fields and brasseries of the lame French Impressionists.
Just kidding.


What is almost official, indeed *is* official, is that a third surgery is planned for my right shoulder area. Philosophical inquiry: When does the area between clavicle and humerus cease to be a shoulder area? [Mine may be the only Hergéveen Manor House in the region in which you will actually discover the sound of one hand clapping.]


You only have to tell me a dozen times, you cross-eyed Physician's Assistant! I get yer everlovin' drift, you emotionless cretin! [There is a storm brewing in some medical bloglets that purports to be about the usefulness of beings such as PAs and NPs. It is when you plomb the depths of the meaning of "usefulness" that the real argument, that is: how much money can Happy and Scalpel legally earn without compromising their liability one red cent? It's a riot. Yawn.] {I am being mean. The argument is interesting, and, as it touches on the nature of things, important to the future of healthcare. *burp*}

She is very nice. She has long, straight, and recently trimmed dark hair. She looks to be about 12 and speaks in a sing-song voice when saying things like, "I know it is hard."


She wouldn't know hard if I hit her.
(This is my new favorite sentence. I am going to enjoy it again: She wouldn't know hard if I hit her.)
Which, of course, I would never do -- I don't have any shoulders.
I may not have mentioned that I may decide to go left-hipless, too. But I think I will save that for when life begins to bore.


"The spacer in your right shoulder is now just a foreign body that is attracting bacteria. It must come out. You are having fevers, pain, and elevated white counts while on intravenous vancomycin. This is not normal. We cannot keep you on antibiotics indefinitely, particularly as we still do not know what we are dealing with -- your cultures are not growing any pathogens."


She has the art of S - V - O down pat. The plan, I see, is to wear me down with simple declaratives and restatements of what they think I already know. Ha! They can never know how little I really know! I should not be misoverestimated.


"But," I whine, "It seems like we are just chasing this from joint to joint, bone to bone, doing one surgery after another. It can't still be an emergency each time! I know I keep saying this but please hear me! I. cannot. do. this."


Note that most of my statements should be issued with asterisks and readily found errata sheets. My écouteurs, and rare interlocuteurs, also ought to be equiped with something like a fly swatter, to manage the pestilence of my punctuation -- it tends to swirl.


That would be pity in her eyes, however briefly -- proof she definitely does not know me. I am quite capable of producing sufficient self-pity, thank you. No matter, her tone of voice made plain her conviction that I had no choice but to play out the scenario that her boss has had her deliver.

He *may* have said the same thing to me last Tuesday. He *may* correctly have concluded that I am not accepting this thing that he sees as a fait accompli. Just because I am fluent in the language does not mean I am the least bit cartesian.


Maybe it wasn't pity. Maybe I poked her in the eyes with speed faster than light. Yeah... that's it. I poked her in the eyes -- yes, both eyes -- with a gnarly stick and was so quick about it that neither one of us saw it happen. Yeah. And where is the thermometer? Fred is hiding the thermometers...


The ID person I trust most is on vacation -- and while she can be equally assertive, she promises an open mind. I find her believable and capable of sustained argument and explanation. I leave her exam room without any still-plaguing worries or questions. Her hair is blond and blunt cut. She is tall and wiry, and wields her wit like a very sharp knife. She gets grossed out by skin ulcers. This I know because we sat together, groaning "grossssss!" at the sight of my nasty foot wound -- it is almost healed, thank goodness (and the Wound Care Center).


We call her Susan because that is her name. Susan doesn't afford me the time to develop a healthy strain of denial. She almost does the Triple Gallic Non, and does do a passable wagging finger. They say she is just a PA, but I suspect that she is the brains behind the outfit. I mean, go figure -- which of their medical staff has managed a two-week vacation at high-holiday time? That's right -- Susan has.


I am trying to understand how the passage from infected prosthetic joint to osteomyelitis means anything. It has significance for these medicos, I can see that. They think it profound, even.

Let's see: same process, slightly different medium. Certainly, once in the bone, any bacteria or what the eff-ever has it made -- I have pre-existing avascular necrosis virtually everywhere. A match made in heaven.


I am beyond depressed. I scared Fred last night -- sleeping fitfully, I kept waking up screaming. You see, as the shoulder area starts to relax and fall backward toward the mattress and the pillows -- well, it sure feels like tissue and schtuff rip and tear -- it is very painful. Horrific, actually. And, if it's my unconscious ruling the roost, I scream. All the care I take to behave well and unremarkably in my waking hours? A complete waste if I am going to scream my bloody head off all night.


Marmy stole my heart away during all that noise, though. As my wailing fades, I see Fred floating in mid-levitation, hair pointing skyward. I see the tip of Sam-I-Am's tail fleeing the scene. Dobby immediately jumps in the trashcan (there is no explaining Dobby). But Marmy? She has come close to me, she is "ack-ack"ing to beat the band, seeking in my scream some hint of syncopation for herself. She came close, she stayed, she did not leave me all night long.


Don't touch my anthropomorphism. It is a vestige of good mental health.


The Boutiqueur and I have a secret worry -- the heart. This breezy and beautiful afternoon, just as we arrived back at Marlinspike Hall, deep, deep in the Tête de Hergé, I had a good five minutes of chest pain. It could not have been truly cardiac -- but I am psychologically primed to fear the be-all-end-all of a "blown" aortic aneurysm.

There is a huge logical disconnect -- but the point, I suppose, is that any note taken of the heart now quickly converts to an internal seminar on what it might feel like for that sucker to really blow. The cardiologist I spoke with on the phone lacked all humor. I asked what symptoms I should learn to recognize. He laughed mirthlessly and said something like: "You won't have time to have any symptoms..."


I don't think that has any relationship with this tenacious infection -- The Boutiqueur is more correctly focused on my crappy aortic *valve* -- its bicuspidness. Bicuspidity? And the chest pain? Well, my heart rate hasn't been below about 110 in months now... Shoot, probably nothing but heartburn or a pulled muscle.

Yeah, Retired Educator! Borrow trouble, you nitwit.

Earlier this evening, I began a reread of The Adventures of Tom Sawyer. I like the transparency of my mind. My memory stretches back to sitting on an old painted bedstead with a very lumpy mattress -- down in my grandparents' basement, reading Tom out loud while my Nana ironed. It would have distressed her greatly to learn that the first "real" book I ever picked for myself, and finished, was Go up for glory by Bill Russell.


Monday, December 29, 2008

Thank you, and good night!

Okay, first off? I don't even recognize the preceding two posts. I am leaving them as "published drafts" because I do discern a barely familiar intent from which something might be salvaged. Not tonight, however.

I finally managed, through the magic of pharmaceuticals, to string together a three hour nap. The difference in mentation is remarkable! Several times, my own snoring almost roused me but I fought off the urge.

The medical folks who people my world are wonderful and why I do not remember their sincere dedication to helping me, I don't understand. Some of it has to do with constantly second-guessing myself. Some of it has to do with trust. Most of it is some sort of overblown pride.

Fred has been having A Day. That means -- in La Bianca shorthand -- that Fred is struggling with all that he must do versus the imperious demands of ADHD.

We needed to leave The Manor -- and that means through The Spikes and across The Moat -- at 11:30 am. I woke him in dulcet tones at 10 am, using naught but tender terms of endearment. Even so, he refused to exit the warm bed until I had furnished coffee and two perfectly cold slices of pizza pie. Finally opening both eyes at once, he ambled off in skips and hops across the cold 16th century stone paving and the fancy linoleum -- Welsh deo gratias tiles -- that leads the way to his office, where he plops down in front of his computer. This does not bode well for a timely departure, plus he is mumbling something about having my Go-To-Guy Doctor, now known simply as The Boutiqueur, learn what it feels like to wait. A noble sentiment in some farflung context, I am sure, but not in the realm of our experience with The Boutiqueur... and certainly not a position Fred has any right to adopt!

We were cooking with gas but with no food in sight.

At 11:22 am, Fred fairly flies across my field of vision and the knot in my stomach relaxes -- until I hear him cursing and see envelopes and other scraps of paper swirl upward in small vortices from the oddly planed oak wardrobe. There's nothing like tornadoes in the bedroom.

We have the following conversation:
Me: Whatcha doin?
Fred: What does it look like?
Me: We need to leave in seven minutes.
Fred: I am doing something important.
Me: Can I help?
Fred: No, you can't help.
Me: Well, at least tell me what is wrong...
Fred: I cannot find my VISA bill.
Me: Is that something that absolutely has to be done in the next seven... no, six... minutes?
Fred: {glares}
Me: Maybe I can help you find it when we get back over The Moat this afternoon.
Fred: {glaring} Fine. [He grabs a pair of wide-waled peat-colored corduroy pants and a mustard-colored denim shirt and sprints for the bathroom. Whew...]

Humming and packing up my Stuff, I hear the shower start. Between his putty skin, the peat pants, and the mustard shirt... I hope his colors run and smear.

We got there with five minutes to spare, although that included a brief stint between two tankers while the Fredster ate some of the aforementioned pizza pie and steered, if it can be called that, with his knees.

The Boutiqueur is now back in charge of my "case." We put our pointy heads together over the minutiae of my bone and joint infections, over the lacunae of information identifying the offending pathogen(s), over Fred's level of frustration, and over my bossy bitchiness.

He fears the overuse of vancomycin -- I am on my second six week course of receiving it via the PICC line, and they just hiked the dose to twice a day, even though my trough level was "normal."

He agrees with InfectiousDisease Man that the spacer impregnated with antibiotics that was inserted in August is now nothing more than a germ magnet and ought to be removed. (My index finger was wavering and waving in the air at that... but my lips seemed to be glommed together with pastry cream.)

My WBC count is 16,500. The CRP is still elevated (and the sed rate still NORMAL! How utterly odd...). No fever in the office... but back at the ranch, it shot up to 100.6.

It felt great to hear him think out loud, which let me relax, reassured that someone with plenty of brain power and compassion was there so that I could check out and put my resources toward something recuperative. Like a nap.

He has a notation in my voluminous chart (something I find very embarrassing) that when given things such as Ambien, I do NOT sleep and report "feeling weird." I do not recall this but he nods sagely and wonders aloud if there might not be something already in my "arsenal" that might work well to break the cycle of insomnia. We hit on amitriptyline and so I will try adding 100 mg tonight.

[Note that on the hint of a promise, alone, I was able to grab three hours!]

Ruby the Honda CR-V flew down the road -- zoom zoom zoom -- and I visited for a few minutes with Dr. PainDude's PA, who then gifted me with the month's worth of pain medicine. She used to work for the brother of my OS, and regaled me with funny stories of their apparently legendary antics.

Tomorrow? InfectiousDisease Man, blood draw (unless my PICC will give as well as receive, which it would not last week), a hair trim, and home.

I don't feel very hopeful when I look at my medical situation -- but I respect the hope I have seen in other people throughout the day -- and I love my Fred, and acknowledge his frustrations as being something seen only in people consumed with the rigors of breathing in, breathing out.

I am very lucky.

Thank you, and good night!

Friday, October 17, 2008

An Embarrassment of Sensation

I only have access, at the moment, to the abstract of this article, published in the October 16, 2008 issue of Rheumatology. The reference popped up as the latest item on my MedWorm "CRPS" news feed.

C. S. McCabe, one of the authors, is known to me (giggle) as someone who is at the forefront of investigations into (Step away from this non-scientist's understanding!) how to bridge the gaps between pain sensations, the complex processes of pain perception, and the expressions of pain -- he has written extensively on mirror visual feedback, for example.

Yes, I get the rolly-polly poly-semy of expression.

D. R. Blake is unknown to me, though from looking over his work, as represented in PubMed listings, he seems more oriented toward microbiology and his study of sensory/motor incongruence takes place more often at a cellular level (That was an attempt at clever levity. Quite successful, I'd say.) He also seems to have an intense interest in Chlamydia. (Ar!)

Both hail from the Royal National Hospital for Rheumatic Diseases in conjunction with The School for Health, University of Bath, Bath, UK.

Here is the abstract:

An embarrassment of pain perceptions? Towards an understanding of and explanation for the clinical presentation of CRPS type 1
October 16, 2008 (Rheumatology)


Complex regional pain syndrome (CRPS), a fairly common problem in rheumatological and orthopaedic practice, is an allodynic pain state of uncertain pathology often variably and unpredictably responsive to treatments. Although published diagnostic criteria are available, in the reality of clinical practice these do not appear to encompass the wide variety of symptoms that a patient may present with. This leads to scepticism on the part of the clinician and confusion for the sufferer. This article aims to provide some explanations for an often bewildering clinical picture. We provide a construct for the plethora of symptoms that we have entitled ‘the embarrassment of pain perceptions’. With the aid of a case report we examine recent research that suggests how peripherally based symptoms and signs arise from changes within the central nervous system, with particular attention given to the control function of the motor–proprioceptive integrative system. We speculate how these changes within the central nervous system may provide the patient with CRPS the ability to access complex layers of lower level perceptions that are normally suppressed. We propose that such a system may explain some of the clinical puzzlements seen in this condition and suggest that the complexities of CRPS may provide an insight into brain development through evolution, which is a fruitful area for interdisciplinary clinical and scientific research.


KEY WORDS: Complex regional pain syndrome, Pain, Motor control system

This goes far toward explaining (because in an acceptable format, because provided by acceptable people) the often off-putting richness of pain vocabulary chez someone with CRPS.

Cough. Of course, I am not fooled by the seemingly haphazard use of "interdisciplinary" -- a quaint word in an ugly code.

But then, I haven't read the article yet.

Wednesday, October 1, 2008

Keep the Faith



Every time I encounter a good blog entry about CRPS/RSD, I try to link to it -- and offer a huge "thank you" to the author, because such things are few and far between. This morning, my Medworm subscription hit upon the following:







over at Suture for a Living. The intro to this blog sketches the broad lines of this blogger's interests:




I am a plastic surgeon in Little Rock, AR. I may "suture for a living", but I "live to sew". When I can, I sew. These days most of my sewing is piecing quilts. I love the patterns and interplay of the fabric color. I would like to explore writing about medical/surgical topics as well as sewing/quilting topics. I will do my best to make sure both are represented accurately as I share with both colleagues and the general public.




Such a desire, such an approach, is appealing to me, especially, as most of my professional "specialty" deals/dealt with the interplay between the plastic and the written arts, and my interest peaks whenever I encounter a unifying vision of plural modes of representation.




Lord, how easy it is to lapse into Ivory Tower Speak (yet another of my foreign languages).




So, this morning I am grateful to the incredible technology that scans the world of electronic communications for things that are of interest to me, and possibly to me, alone. I am grateful for the chance to connect, however artificially, with someone of a completely different ilk who nonetheless has transected the thread of my thoughts... I don't get excited anymore about the likelihood of effecting any real progress in the diagnosis and treatment of CRPS/RSD through internet "publicity" -- I am too jaded, too much in pain, too depressed, too disabled.




I hate that word -- disabled.




Yesterday, after coming home from the weekly Infectious Disease appointment (the PICC line comes out next week! Hooray!), I was in bad shape. Riding in the car is difficult, and my pain level was hovering around 8 (grrrr -- what a useless thing, the pain scale). However, I had made noises the evening before about my firm conviction to clean the house a bit, and so, after finishing the first two infusions of the day, I gathered my weapons of war and began vacuuming.




Okay... I am used to Wheelchair Vacuuming, an Olympic endeavor, an Olympic sport. But now it is complicated by a useless right arm and a *&^%#@ hurting left shoulder. The nurse in the ID office had set off a flare of pain in my left hand because she had been unable to get any blood through the PICC line and had been forced to stick me several times in that hand. Not her fault, just an unfortunate thing when there are needle sticks in an area already involved with CRPS.




Given the circumstances, I chose to use the Power Chair Push-me-Pull-you technique -- basically accomplishing the task by combining the thrusts of the vacuum with the thrusts of my ruby-red chariot.




And somewhere between sucking up the huge pile of carpet cleaner that I had placed over Sammy's last deposit (please see: Potpourri -- Olla Podrida) and the gymnastics of getting into the nooks and crannies of the dining room, I went mental.




Poor Fred. When I go mental, I strive to share the warm and fuzzy experience with my beloved. Poor Fred.




Suddenly I was rolling myself in circles around the living room, sounding off about the state of the puked-upon carpet, about the total invasion of the cat creatures. (Of course, this problem only exists in one tiny part of Marlinspike Hall in the Tête de Hergé -- the rest of this opulent manor is spotless and petless, crucial since we house several museum quality painting and sculpture exhibits, as well as an extensive decorative art collection of baroque furniture -- mostly cabinets, commodes, and French stools.) Fred stretched out on the nearest chaise longue, steeling himself against volley upon volley of invective.




Let's just say this: Promises were made; Christmas gifts were agreed upon. And yes, the removal of carpet and the refinishing of the medieval stone and early 20th century wood floors were part of the negotiations. So it goes when I get mental.




I worked on for several hours, and ended up needing help getting into bed -- always a depressing thing, not to be able to do even that. Plus, I left some of the cleaning undone.


Anyway, my hope was that a bit of rest would conquer the pain and difficulty moving, so that I could redeem myself by being a fun partner for the remainder of the day. Instead, Fred ended up having to nuke a frozen dinner for me (losing points), cut up the pale but purportedly "blackened" slab of purported chicken (winning back what he had lost), and take on the feline's evening meal, as well. Poor Fred. Yes, it is a refrain, and one you may as well learn.




When my acronyms are under control -- from the SLE to the AVN, passing by the AI, and back to the CRPS/RSD -- I defy the meaning and intent of the label disabled. Doing anything without assistance and in my own time is wondrous. That life has been unavailable to me since late last year. Everytime I try to pretend this is not so? I pay, and everyone who loves me pays.




So sometimes the best I can do is celebrate the stray blog that -- in the best of all possible worlds -- might make a difference. Thank goodness for this quilting, sewing, needle-wielding plastic surgeon who decided to disseminate some information about one of the more obscure neurological disorders in existence! Somewhere there is a woman who will be able to joyously and painlessly vacuum her living room, who will pirouette as she cleans the toilet, who will dash from one satisfying professional experience to another, from one colloquium in the Rainbow-Ribboned Multicultural Center to the next in Stuffy Whosits Library.




I just gotta keep the faith.




Ar!

Monday, September 22, 2008

Stridor

One of the medical blogs I enjoy directed me to this story at a relatively new and entertaining blog, Ready To Deliver?

It made me remember the pride I felt at my recent highjinks in ICU. After four days on a ventilator, I was eager to be extubated. Finally, the tube came out and I eventually settled down in an effort to get some real sleep. That didn't happen because I had stridor and was put back on some sort of forced air do-dad.

As I would simultaneously tire and drift off, the oxygen saturation numbers would kick off a loud, obnoxious alarm -- and bring to my bedside a stream of medical types, all yelling at me to breathe, and other ridiculous verbal commands.

So, as my heart pounded from the sudden light, noise, and movement, the next thing my nurse would insist upon? "Retired Educator, you have got to relax and get some sleep!"

Yes. This went on for what seemed like forever but could only have been about 8 hours. The various doctors who wandered in assured me that the ersatz tube could be gotten rid of the next day, and that I should just relax and get some sleep -- surely I was exhausted!

ALARM-ALARM-ALARM-ALARM!

I decided that all tubes, except the foley, for which I was, in truth, quite grateful, would have to go... The i.v. was fine, too -- didn't hurt, didn't keep me awake, and didn't ALARM.

I was polite enough to discuss it with my nurse. She must have thought the discussion to be purely philosophical -- until I detached and yanked everything on my face, and handed it to her while she was still sputtering rules, regulations, and orders.

Respiratory Therapy decided not to go to war over my show of initiative, and the regular alarm proved much easier to sleep through. The alarms cannot be turned off -- but they were set at their least sensitive. And so I finally fell into a natural sleep...

Until my nurse showed up to put in another nasogastric tube. My reach had exceeded my grasp! I gather that most people who yank things out while in ICU are confused and agitated, have to be restrained -- both chemically and physically. So it must have been a weird site to my surgeon when he walked in and found me studiously attempting to help in the reinsertion of the n/g.

I don't know why. I mean, I explained it clearly enough: I meant to just pull out the breathing tube but accidently pulled out the feeding tube as well [goofy grin].

Thursday, September 11, 2008

Home

On 25 August, I had surgery to see if my right shoulder prosthesis (one of three -- prostheses, not shoulders) was infected and needed removal. After finding 4 pockets of pus and having the prosthesis fall out of its own accord, I wasn't doing well. So they decided to keep me on the ventilator, hide me in the ICU, and not close the wound. On 29 August, the second surgery was performed with the goal of "washing out" the wound, putting in several drains, and inserting a sorry looking cement spacer impregnated with antibiotics.

My cultures were inadvertently left in the OR overnight, so what organisms were growing became a topic of consternation between my surgeon and his staff and the infectious disease guru and his minions.

I did, however, clearly grow MRSA, and so spent my 10-day stay in isolation. Yellow is a most unbecoming color and Fred found those blue gloves hot and cruel.

My supremely talented orthopedic surgeons are adroit at deflecting my pleas for promises of a new prosthesis in a few months -- they just won't commit. My main orthopod does a bad imitation of a spastic retard when I ask him what my arm movements would be like without a shoulder.

He fails to understand that this would leave me with one functional extremity. He fails to understand, indeed, everyone seems to fail to understand, that I cannot lose any more.

Did you hear me?

I cannot lose any more.

I am on i.v. antibiotics at home -- vancomycin and *bleep* (I cannot remember and don't feel up to rolling into the kitchen). So that is 4 infusions a day for 6 weeks. It is not a big deal -- except insofar as it reminds me of circumstances I'd rather ignore for a bit.

The pain is horrible but I believe the management of it is at the optimum.

(Don't touch that sentence... It was difficult enought to formulate once -- I won't do it again.)

The Friday before surgery, I had an echocardiogram to rule out endocarditis, as I have a bicuspid aortic valve. Thankfully, I came out "clean." Oh, except for the aortic arch aneurysm that is currently measuring at about 4.7 cm. The cardiologist who called and reamed me out for missing a few years of testing was not hesitant to scare me to death.

So there is much on my mind and much that is hurting the body -- the CRPS/RSD, for example, is unbelievably inflamed (my legs have never ever looked/felt this terrible).

Despite getting two units of blood to boost my hemoglobin of 6 -- I am tired and wonder what my H & H is now. My surgeon's admonition of how to go about life until seeing him at the 6 week mark? "Rest and think healing thoughts." What a lovely man, not to mention a talented physician. I don't know if it is technically true, but my heart says that he saved my life.

Well, off I go to try and catch up on some reading in the ether of the blogosphere... Thank you for any stray good thoughts you can label and let loose on my behalf in the coming weeks.

Sunday, August 24, 2008

Bianca's Big Mouth or Wetback Entitlements


Mes chers lecteurs, mes lectrices hors comparaison,

Je vous écris à propos d'un petit rien.
Voir: http://prpnurse.blogspot.com/2008/08/entitlement.html

Dégueulasse! Jonathan Swift, a-t-il dû se soumettre à de telles bêtises?
"Ah! Je ris de me voir si belle dans ce miroir..."

Quelle saloperie! Je viens de perdre ma tête, de m'énerver, de me mettre en colère! De quoi s'agit-il? Il s'agit d'une blogueuse impérieuse, pseudo-pseudo, qui voudrait être toutes choses pour tout le monde (eh oui, tout le temps!).

Je me demande... serais-je aussi bouleversée si demain n'était pas demain?

When will they understand that to laugh in the mirror comes only with the well-developed, umm... capacité... la habitude... of seeing oneself? I am fearing the ones without the laugh en face de, in the face of -- the looking glass.



@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@
Retired Educator, here. I need La Belle Bianca's grande bouche getting me in trouble today, of all days, like I need a prosthetic shoulder joint or aortic aneurysm fix!

Friday, August 22, 2008

a cup of trouble, anyone?

dear all,

would anyone like to borrow some trouble?

i had my echo at 8:30 this morning. i asked the tech how it looked and she gave me a thumbs up and a "looks good to me." so we go home and i plan to pay some bills, declutter my piles of paper, etc.

ring ring ring.

it is one of the cardiologists. he is talking fast, and i cannot understand the words.

so... my heart is pumping well. i still have my usual aortic regurgitation from my bum aortic valve. and then there was that other thing. oh what was it?

oh yeah! where the aorta attaches to the heart ("the aortic root"), well... it is kind of dilated. like in an aneurism. i become a regular chatty cathy -- i ask if this precludes me having the surgery on monday and he says, no, that will be fine. then he starts to yell at me about how i need to have echos regularly -- that they found this dilation back in 2003. i don't *remember* that! (after i hang up and am talking to a weeping fred, he reminds me -- my cardiologist told us that it wasn't as bad as it looked on the echo -- and that i did NOT need to foillow up with him anymore! fred remembers that vividly.)

anyway, it measures 4.65 centimeters. i ask what needs to be done about it -- and the guy fairly hoots! (he actually was very nice) "major open heart surgery," says he.

well, what kind of symptoms should i be looking out for? and i am getting a chill just typing his response.

"you won't have any symptoms."

as in, it blows, i die. (hence, the weeping fred.)

there must be something extremely wrong with my mental health, this all seems like a great big joke to me! whahaha! what's gonna happen next?

i told fred that this is definitely an incentive to live in the moment.

so -- i guess it is a good thing i don't have hypertension.

whahahahahahahahaha!

love,
prof

Thursday, August 21, 2008

Hiatus

Retired Educator here,

I am having surgery Monday to remove an infected shoulder prosthesis. No one was able to tell me whether or not I will have internet access if I bring my computer. The closest intel was "Well, I know that we are a wired hospital because we have these things everywhere!"

Huh. I anticipate major 'puter withdrawal. The distraction would have been nice and I also was looking forward to blogging the patient-side of a hospitalization -- now that I am more familiar with the major gripes let off by medical types, I think it could be an interesting exercise.

Yes, thank you very much, I know that there is nothing preventing me from taking notes, even sketching the pieces out long-hand. I can still do it. Still -- stop trying to solve my problems, you people, you! I need to fuel useless angst -- it serves to crowd out the more dire reality! You're just messing with my Trojan Horse of Denial.

I'll be in the hospital between 5 days and several weeks, according to the surgeon. According to his nurse, I'll be there 3 days. I'm thinking she probably knows best. They will put in a cement spacer that is laced with antibiotic -- after a "few months" that can be replaced with a new prosthesis. I'll also get i.v. antibiotics through a PICC line. My orthopedic surgeon, however, seems intent on depressing me further by saying, and saying again, that I could end up "without a shoulder joint." There is nothing someone who is already a geeky gimp stuck in a wheelchair wants to hear more! Excuse me while I panic.

I couldn't even get him to give me odds. That's low, when someone won't even give you odds.

Wednesday, August 20, 2008

If Dr. Seuss had written for ER

by Brent Fogel

Kerry: Now Mark, I think this ER's great,But...there are problems that can't wait!Now Benton's fine, and Carter too,But Ross and Susan just won't do!Now who do you think that we should hire,Since both of them today I'll fire?

Mark: Kerry, maybe we should wait and see...

Kerry: That's great Mark! I knew you would agree...

Jerry: Dr. Weaver? Sorry to interrupt...But the paramedics just pulled up.

Mark: Ok, I'm here. What have you got?

Shep: This little boy has just been shot!His pulse is faint, his breath is weak.We did all we could to stop the leak.

Riley: And this woman here, she has a broken hip...

Carol: How did she fall? How did she trip?

Shep: The kid's mom was getting in my hair,So I shoved her--lightly--down some stairs.

Mark: Benton, Kerry! Take the mom to three!Doug and Susan! Come with me!

Riley: But wait, but wait! Oh don't you see?We've got some more; one, two, and three.

Kerry: You've got three more? How can this be?Explain it, tell it all to me!

Riley: Well, Shep was driving. Really fast.A light turned red. Shep hit the gas.We hit a car, it hit two more.Soon the total rose by four.Another bang! Another crash!But we couldn't stay, we had to dash!We grabbed these three but I am sure,The injured totaled sixty score!

Carter: These people really are a mess!Their injuries I cannot guess!It makes me sick, my knees are weak,A toilet I must soon go seek...

Benton: It's ok Carter! Stay on your toes!It doesn't get worse than this you know!To Trauma four let's take these three.You can do it, come with me!

Green: Ok, let's get this boy on the table.To save his life if we are able!

Haleh: Dr. Green! This boy is cyanotic!I can't find a pulse...oh, wait I've got it!But it is weak! Oh, woe is us!

Doug: Give him saline! IV push! CBC, chem 7, stat!We will save him, bet on that! Oh no, he's showing poor perfusion!Lydia, start a blood tranfusion!

Lydia: But Dr. Ross, I hate to say.The blood bank didn't come today!We're out of blood, I can't believe!

Doug: Here, use mine! (rolls up his sleeve)

Kerry: We need some help! There's been a crash!Someone's heart stopped with a flash!But Dr. Benton saved the day,And Carter's going to be ok.

Susan: What can I do, where can I go?I'm not incompetent you know!I deserve a chance and with good reason,I only killed one guy last season!

Chloe: Hey, Suze? Look! It's me...I doing great...oh, can't you see?I'm back on drugs and feeling woozy,Can you take care of little Susie?

Susan: Not now Chloe! I'm in a panic!

Kerry: Get Susan out, she can't handle it!

Mark: It's fine! It's done, the kid's ok.We're sending him up on his way.To surgery he's off to go,They must sew up that bullet hole.But Dr. Ross, he's out of sorts...We had to take a dozen quarts.

Benton: Ok, we're done. I did it all.I used a double breasted suture saw.I closed them up, I fixed their ills.I patched their wounds, I gave them pills.I have their livers in this sack.I did it all, behind my back.I need more patients, give me more!I just cured three, now give me four!

Carter: What happened? Did I miss it all?I saw some blood. I took a fall.But it doesn't matter, we saved the day!

Carol: Get ready! There's more on the way!

Friday, August 15, 2008

Today's Diary: The Man on the Train

Retired Educator, here --

I am in an odd place, and by that I do not mean merely living in Tintin-world with a quasi-fictive diva, La Belle Bianca Castafiore, my darling intrepid Fred, and three very wily cats -- always half-stuck in Marlinspike Hall et (ce qui est beaucoup plus important) dans la Tête de Hergé, qui est, d'ailleurs, très décédé.

Quasi-fictive -- what do I mean by "quasi-fictive"? Have you ever heard La Belle Bianca Castafiore belt it out? Do you really have a clue as to how "belle" she is in "ce miroir" -- how captivating is her laugh? No? Then check yourself, my friend, check yourself! The tree, it falls in the forest -- the one hand, it claps.

Since December or January, I have been fighting an infection which translated into daily fevers and sweats, pain and general misery. Since this was an addition to an already difficult mix of SLE, CRPS / RSD, multifocal AVN, and adrenal insufficiency, I haven't been, ummm, well. Finally, my white count fought its way out of the 13,000s and the 15,000s, making its way to the 17,000s -- the platelet count went bonkers -- and so on. In spite of several visits to high-dose-steroid land, the pain and inflammation were not self-limiting or even slightly improved. So I was sent to my favorite orthopedic surgeon to determine whether one of my three joint replacements, or one of my three reconstructed joints, was infected. Yesterday, after managing to finally unearth my gallium scan results, it was declared a fait accompli. The right shoulder is the offender.

So I have been in this weird, strange place of fever and fiction, dread and denial. I am not sure that I can go through the process of losing that prosthesis, being further limited in what I can do. I am already living this vida loca from the perch of my wheelchair.

I maintain a diary and while a part of me knows this is nothing but an intentional confusion, some days, I want the diary to speak on the blog. The interstices, they have always fascinated me, even -- no, *especially*-- in my academic life -- which, I'd best acknowledge, is as dead as Hergé's tête.

Public blithering, always a pleasure. En tout cas, this is what I wrote today, in diaryspeak:


dear diary,

i sat down to purge my soul and instead got hung up thinking about an album by the roches. it must have been one of their first, as most of the songs were written around 1979. ah, yes, it was their first. that LP once felt like the soundtrack for my pretty awesome and full life. with the help of heavy denial, amnesia, hard drugs and heavy metals, it still can!

that was around the time that i both worked 40 hour weekends (...) and had a side gig working nights at a convenience store. the fact that i was also going to school full time ought to be more important but somehow it just sits there like an overweight, exhausted factoid. i was sharing a house with the woman i still call my best friend, all current evidence being, unfortunately, to the contrary. we were a tad bit wild, so it is safe to say that my approximate 60 hours of work a week plus my 21 semester hours probably saved my sorry ass. it turned out that she wasn’t actually *enrolled* in school – she had dropped out and was spending most of her time waging war against corporate america (she is iranienne). [ha! neither assertion complements the other! what a hoot that i had a moment of thinking the one danced with the other!] still, we managed to meet up most weekday afternoons in the foreign language department lounge – i thought we were meeting after classes! in reality, who knows what she had been doing all day beyond passing bad checks to buy such household staples as cognac and fresh flowers.

not terribly domestic (or domesticated), she was famous for waxing and polishing the twisting wooden staircase to our second floor. i was well-known for almost breaking my neck upon said stairs.

she saved my convenience store job on several occasions. perhaps it was due to a slow build up of fatigue, perhaps i just really hated that job, but i developed a serious pathological aversion to the task of cleaning, straightening, and filling the cooler section of the store. it was cold, it was creepy – when you are the only one there and it is 2 am – everything is creepy! i began to leave it a sad mess, as my dedicated manager quickly noted. few things escaped her jaundiced alcoholic eye, except the occasional bank deposit bag that she tended to leave on the hood of her car.

romy began driving over and doing the cooler part of the job for me! bless her sweet bones! the real gift was one of company. i betrayed little of the fear that some nights obsessed me. after an incident that ended with me chasing away four or five guys intent on robbery (don’t ask. to this day i don’t know what possessed me! i was so angry that they would even *think* of robbing “my” store. harrumph.) – i was happy for her company. if my manager had ever come in... ah, but did i mention her jaundiced alcoholic eye? i could easily just have cued romy to switch off the back cooler lights and waited her out – luckily we never had to do that.

we did, one night, have to escape two idiot guys (sum doods) who were not stellar citizens. they wanted admission to the store of Convenient Wonders, but i had closed. romy and i headed for the pristine 1965 baby blue cadillac that was to serve as our cushy ride home -- only to find a flat tire.

lucky us, we had the two yahoos to change it. they were three sheets to the wind (someone tell me of that phrase's origin.) but still focused enough to realize that they had two pretty girls, and that one of them was kinda foreign looking. small detail... this was during the “hostage crisis” in iran. romy did not advertise her background, her home. relatives and friends of hers in the states had been attacked, and calumnied.

so our sum doods played twenty questions and by the end, we had them convinced that romy was CUBAN. they had a brief offer of persian, but did not seem to understand the term, and kept arguing that she looked like an “island girl,” and the island heavy on their little minds was cuba, and only cuba. to keep them happy, we interspersed some spanish in our witty conversation, encouraging them to “andale, andale, ariba!” with that there tire change.

if my memory does not fail me, little miss anti-everything actually worked in the cotton fields for one or two weeks that same summer. it was a magical summer of possibilities – we were at an age where we successfully confounded world fears with dastardly daring, panache, and other-funkily-worded grand attitudes. it would take me many pages to write enough that the sexual energy of that time could be distilled into the one, or two, right words. Quelquefois, il n'y a pas de mots justes.

anyway... the jobs! the hot, sweaty, elevating and demeaning, safe and dangerous work – comingling with our existential confusions, and our out-and-out joy in living. my mind goes to the roches’ plaintive mr. sellack:

Mr. Sellack
( Words & Music by Terre Roche )

O Mr Sellack
Can I have my job back?
I've run out of money again.
Last time I saw ya
I was singing Hallelujah
I'm so glad to be leavin' this restaurant.

Now the only thing I want
Is to have my old job back again.
I'll clean the tables;
I'll do the creams;
I'll get down on my knees and scrub
behind the steam table.

O Mr. Sellack
I didn't think I'd be back.
I worked here last year
Remember?
I came when Annie
Was going on vacation
And I stayed on almost till December.

Now the only thing I want
Is to have my old job back again.
I won't be nasty to customers no more.
When they send their burger back
I'll tell them thatI'm sorry.

Waiting tables ain't that bad.
Since I've seen you last,
I've waitedfor some things that you would not believe
To come true.

Give me a broom and I'll sweep my way to heaven.
Give me a job;
You name it.
Let the other forty-million three-hundred and seven
People who want to get famous.

Now the only thing I want
Is to have that old job back again.
I'll clean the tables;
I'll do the creams;
I'll get down on my knees and scrub
behind the steam table.


**************************
i won’t drive you all crazy with my demented trip down memory lane with the roches... i actually did not start with mr. sellack – no, i began with a pity party driven by the refrain of i am trying not to have a bad day...

it was another night of not sleeping, of actually fighting my way through some kind of dense, heavy fog of fatigue – hearing myself begin to snore, trying to relax and go with it – but twitching back to wakefulness – afraid of sleeping? it was hot because my fever would not *quite* break and i alternated between sweating and burning dry, and because our demented cat marmy has decided to literally stick to me.

and i came into today ungrateful, full of dramatic suffering. i also had to contend with more cat piss – but that doesn’t fit the heroic theme of my wounded travails... thank god fred was sleeping... it gave me time to get over myself somewhat.

as a result of the beginning of this rapid prednisone taper, i was hit with major gastro-intestinal upset and backache, plus a headache. i don’t *do* headaches very well. i also fear addisonian crises -- having had three of them when fighting infections in the past. you've no idea how stupid it feels to completely forget about your adrenal insufficiency and end up in a crisis.

so i started trying to clean up my pitiable pity-party – and into my feeble head sauntered the roches... and the train.

The Train
(Words & Music by Suzzy Roche)
I sit down on the train
with my big pocketbook
the guitar and a sugar-free drink
I wipe the sweat off of my brow
with the side of my arm
and take off all that I can
I am trying not to have a bad day
everybody knows the way that is
Even though my baggage and I
are using up a two person seat
I'm not trying to be funny
but the guy who sits down next to me
is even bigger than that
we are overflowing out of the seat
I can't look at him
he doesn't look at me....
My face is pressed upagainst the window
and through it I can see
the reflection of the train
I spy on the big guy
sitting next to me
he's drinking two beers
and reading the New York Post
trying not to get in my way
everybody knows the kind of day that is
He is miserable
I am miserable
we are miserable
can't we have a party
would he rather have a party
after all we have to sit here
and he's even drinking a beer
I want to ask him what's his name
but I can't cause I'm so afraid
of the man on the train
****************
it has become my pity-party theme song. we’re all of us screwed up and scared, why can’t we turn and share all that we know we share?

because we are all so damned afraid of the man on the train.

love,
retired educator

Monday, August 11, 2008

Pain and Oversize Pink Frames

Oversize Pink Frames by Linda Farrow for Luxe
PRICE: $525
AVAILABLE AT: Aloha Rag
505 Greenwich St.
Soho
212-925-0882

Retired Educator, here. La Belle Bianca Castafiore? Wouldn't you know that she is a migraineur (proprement dit: migraineuse)? And so it is hand-to-forehead, sigh-then-moan, a red-lipped pucker (Chanel Rouge Hydrabase Creme Lipstick in Red N°5) and these big old pink-framed dark glasses, all topped with that blessed paisley turban that announces her migraines like a neon sign. Quel douleur, quel désespoir profond, quelle souffrance! Néanmoins, je ne peux pas la convaincre qu'elle serait infiniment plus heureuse dans sa propre chambre! I cannot convince her to retire to her well-appointed, restful, easily darkened room that just happens to be at the opposite end of our cozy Marlinspike Hall. No, she prefers to suffer in plain view.

I find myself humming quite a different version of her favorite refrain:
"Je ris de la voir si souffrante dans ce manoir!"

In the midst of this mini-petit-micro pain crisis, I checked my correspondance to find the sainted Jim Broatch calmly at work, connecting people with CRPS / RSD to all kinds of possibilities out in the world. It is so easy to lose oneself with this disease -- not just by deciding to saw off one's arm one Saturday afternoon -- but by losing social interaction. As hard as it is to leave a protected environment and risk being jostled, pushed, stepped on, or -- my personal favorites -- slapped on the shoulder or given that well-meaning warm hug by the requisite Church Lady, we have to go out there or totally give in to a life of pain, spasms, contractures, and depression. So God bless Jim and his talented minions for their constant assault on our laziness and fear!

Here is the latest e-alert with details about a recruiting study -- one of the few I have seen that explicitly includes those of us with CRPS Type 2. I was starting to get an inferiority complex and I think we can all agree that I don't need another complex...


Study Currently Recruiting: Neurotropin to Treat Acute Dental and Chronic Neural Pain

Neurotropin to Treat Acute Dental and Chronic Neural PainSponsored by the National Institute of Dental and Craniofacial Research (NIDCR)

Purpose: This study will examine the effectiveness of the drug neurotropin in treating acute pain after tooth extraction and chronic pain after injury to a limb or a large nerve.

Individuals who meet the following criteria should apply:

Three groups of patients will participate in this study: 1) dental patients undergoing removal of impacted third molars (wisdom teeth); 2) patients with chronic regional pain syndrome type 1, or CRPS-I (also called reflex sympathetic dystrophy); and 3) patients with chronic regional pain syndrome type 2, or CRPS-II. CRPS-I is pain that develops after relatively minor injury to an arm or leg, but lasts much longer and is much more severe than would normally be expected. CRPS-II is pain resulting from injury to a large nerve.

Candidates will have a history and physical examination, blood tests, electrocardiogram and, for dental patients, oral examination and dental X-rays to confirm the need for third molar extraction.

Participants will undergo the following tests and procedures:

Patients with CRPS I and II will receive an individualized regimen of physical therapy and standard treatment to control their pain. In addition, they will receive neutropin or placebo tablets for 5 weeks, then no trial medicine for at least 1 week, and then the other trial drug for the next 5 weeks. That is, patients who took placebo the first 5 weeks will take neutropin the second 5 weeks and vice versa. Neither the patients nor the doctors will know who received which drug during the two intervals until the study is over.

Patients will complete questionnaires about their pain, quality of life, and ability to perform daily living activities. They will have various tests to measure pain (such as sensitivity to heat and cold, to an electric current, to a mild pin prick, etc.); to provide information about changes in their condition (such as tests of range of motion of joints and limb size); to measure blood circulation and sweating in the arm or leg (such as measurements of blood flow to the limb, skin temperature, and sweat production), and other procedures.

Contact:
National Institute of Dental And Craniofacial Research (NIDCR)
9000 Rockville Pike
Bethesda, Maryland 20892 United States

Patient Recruitment and Public Liaison Office1-800-411-1222 TTY 1-866-411-1010 prpl@mail.cc.nih.gov

http://www.rsds.org/3/research/neurotropin_research.html

This E-alert was made possible by the contribution of the members of the Reflex Sympathetic Dystrophy Syndrome Association (RSDSA). To learn more about becoming a member of RSDSA, please click here.

Sunday, August 3, 2008

I don't "do" decaf

Retired Educator here, fresh from catching up on my favorite blogs on my Google Reader.

Kim over at Emergiblog opens an excellent, and sadly necessary, post on Emergency Department etiquette with a few remarks about coffee. Back in the day, she recalls that patients in Coronary Care were only allowed a certain hideous form of freeze-dried instant decaf.

"No coffee for you!" cried the Nurse Nazis.

This made me think of a week I spent in the hospital back in the late 80s. The medical center is well-known and ranks in the top 10 of the U.S. News Best Hospital List.

My doctor started a medication that required me to have a certain minimum blood pressure in order for the nurse to be able to administer it. My normal blood pressure makes medicos want a crash cart nearby, so this was proving something of a challenge.


First, my nurse had me get up to a chair.

Next, walk around the room.

Calisthenics.

Move into a slow jog, a trot, a canter.

Take a shower.


60/40.


No go.


"Coffee, I need coffee, real coffee. I don't do decaf and I don't do instant." I told them.


"You're not supposed to have coffee. It's contraindicated. " Still, she had a curious look on her face, and was checking her watch. The med was to be given before breakfast, and time was marching on, she had report to give, charting to do, a life to live.


She left.


She came back, slinking inside, a mug (a real mug!) of steaming coffee in hand. I did mental handstands and managed to refrain from inquiring after my shot of steamed milk. Like a simpering dutiful child, I blew and slurped, blew and slurped, all under her watchful eye.


Note to readers: it is impossible to properly enjoy the beverage under that kind of woeful surveillance.


Guess what? 80/45.


Almost, but not quite.


So here is the part that you will likely not believe -- I said something about wishing I could smoke a cigarette with my coffee. Just chitchat.


Her beady eyes narrowed so that she had very narrow, very beady eyes.


Yes, she had me go in the bathroom and smoke 1/2 of a cigarette.


And B-I-N-G-O! 90/60. She gave her med, told me to keep quiet, and to be ready to do it again the next morning.


I swear! And I was better prepared the next morning, too. I kept some cream containers in an emesis basin full of ice.


I wish I knew what the medication was but I don't recall. I was more intrigued by this nurse and our transgressions.


Saturday, July 26, 2008

Pedagogy

I found this hysterical and very effective instructional video over at FlautoNP's blog. Thank you, FlautoNP!






The ways we learn! I have always been a fan of outrageous teaching and made every effort, in my time, to underscore even the most arid of facts with some sort of demented presentation. Of course, there is only so much one can do with the French subjunctive, although I think collecting near-rotten fruits and vegetables for the students to throw in their inevitable frustration is an idea not without merit.

Adults learning a foreign language are very inhibited -- unwilling to throw caution (not to mention near-rotten fruits and vegetables) to the wind and make mistakes. The Effortlessly Poopy and Fluent Child is forever touted as the paradigm for the Tied-Up-In-Knots and Constipated Adult. Unleash that inner child, learning specialists cry, and language acquisition will have a recuperative and restorative effect (not unlike some revolutionary scheme for toilet training).

Those wacky learning specialists!

The idea, of course, is to trick the staid adult into risking just a little mimicry of the Crazy Educator in the hope that the over-the-top instruction would draw them out precisely to the point of what is correct.

Teaching language was always fun -- except when it was tedious, and even then, I [hope I] never let the tedium show. "Teaching" literature and a more enlightened form of contemplation, the critical essay, however, was perilous and nearly always tedious.



No, not so much tedium -- more like being flailed alive.



Like many people, I love En attendant Godot, Waiting for Godot. Beckett gives me shivers of delight, frissons of recognition. For some reason, we think his work is easily accessible and we offer it up on platters to new literature students, mint jelly on the side.



Class discussion of the play was abysmal. This being my first go with "teaching" literature at the university, and given my incurable optimism, I had done minimal direction of the discussions, vowing instead to follow my fearless students anywhere. Yes, I forgot that they were hopelessly constipated.



They talked about homeless people. Yes, Didi and Gogo served as exemplum of this "scourge taking over our cities and parks... " (I bought Maalox.)



Then, they decided to talk about the role of desire. (I contemplated a purchase of champagne.) However, this quickly devolved into a discussion of how brave it was for Beckett to present such openly gay characters. (I rolled a few joints, drank some more Maalox.)

What's the best way to "teach" Beckett's En attendant Godot? Certainly not by letting go of the reins and liberating student discussion! The next semester, I relied heavily on performance value -- we watched three different theatre presentations, we read it aloud as a class, not permitting anyone to fall behind in either reading or understanding (jusqu'à un certain niveau). They began to know Estragon et Vladimir, Pozzo et Lucky, understand the oblique references, and be comfortable in the silence of what they could not know.

I was psyched. The final papers were about to burn a hole in my briefcase. I pulled them out, stacked them neatly on my cleared dining room table, grabbed a Diet Coke. Found an ink pen, got a fresh legal pad. Deep breath of excitement.

"Vladimir and Estragon are two homosexual homeless men..."

How do I get in touch with this Mad German Doctor Dude?
In the interim, I find great comfort with the Parisian Sock: