Tuesday, March 10, 2009

Rush, Shut the Hell Up


Margaret and Helen, each, never cease to amaze me and ease the tension in my jaw, at the same time.

Helen Philpot wrote this today:

Margaret dear, I need your help sorting all this out. Rush Limbaugh has a daily audience of 14 million morons- give or take a few rednecks - Howard excluded of course. So are we to believe that they all want Obama to fail? Do I have that right? I am a little confused by this recent turn of events because weren’t these the same peckerwoods who got so upset a few years back when a famous country western singer told about 2,000 people at a concert in London that she was ashamed that George Bush was from her home state?

Actually I believe her exact quote was, “Just so you know, we’re on the good side with y’all. We do not want this war, this violence, and we’re ashamed that the President of the United States is from Texas.” If I am not mistaken, conservatives everywhere were enraged - albums were burned, death threats ensued. It was treason.

But Margaret, let’s consider the following quotes attributed to Rush, another celebrity - albeit a celebrity who really gives renewed meaning to the saying a face made for radio:

“I mean, let’s face it, we didn’t have slavery in this country for over 100 years because it was a bad thing. Quite the opposite: slavery built the South. I’m not saying we should bring it back; I’m just saying it had its merits. For one thing, the streets were safer after dark.”

“The only way to reduce the number of nuclear weapons is to use them.”

“If we are going to start rewarding no skills and stupid people - I’m serious, let the unskilled jobs, let the kinds of jobs that take absolutely no knowledge whatsoever to do - let stupid and unskilled Mexicans do that work.”

“Bipartisanship only happens after one side has been defeated. Ask the Japanese after World War II. Ask the Germans.”

The same jackass who made those statements also said, “I want Barack Obama to fail.” And more recently he expounded on that statement when he said, “The dirty little secret is that every Republican in this country wants Obama to fail, but none of them have the guts to say so.” For goodness sakes, I am surprised he finds time to be so loquasious between the mouthfuls of donuts.

Personally, I think Rush Limbaugh is a big, fat pig. I can say that without worry because I am a big, fat bitch. But what he looks like is really just so much fodder for people like me who don’t like his politics. What he says, however… well that is another story.

Hypocrisy. It’s a powerful word. Republicans should look it up sometime.

Barack Obama is a sitting President of a country still at war and on the brink of economic disaster. And Rush wants failure? He is hoping for failure and 14 million listeners who call themselves conservative Americans are okay with that. But a country singer wishing the President didn’t come from her home state caused moral outrage. Has anyone gone and looked up that word hypocrisy yet? While you’re at it, look up the word culpable. Scratch that, just look up the word gluttony.

Of course, Limbaugh can say whatever he wants. It’s a free country. And people can stop buying albums when they don’t like the singer anymore. That’s what ”it’s a free country” means. And I can say that Rush Limbaugh is nothing more than than a fat, greed-filled radio star praying on the insecurities and ignorance of people who graduated high school thinking that they knew everything. Like I said - it’s a free country. You’re free to love it or even hate it if you want. All I ask is that you be honest with yourself about which of those two positions you have chosen to subscribe. Because considering the current state of the world, we will all succeed or fail together - like it or not.

Margaret, I know that Howard listens to Rush. I hope he doesn’t read our little blog. And know that if only because he loves you, I love him. I just wish he would check out the local NPR station once in awhile. I mean it. Really.

The "Beware" List (Nascent)



Beware of blogs or "about me" blurbs that use the following words/phrasings/formats; Put on your sneakers when visiting bloggeurs who use them in clever combination:

musing(s)
bemused musings
ramblings
Patel
He's a maverick!
vagaries
random musings/observations
long lists of favorite Twitter threads (a you-had-to-be-there situation, if ever there was one...)
thinking outside the box
one has to wonder
(more than one exclamation point) !!!
(excess of ellipses........)
(dash happiness -- -- -- !!)
aka (when used lazily)
adventures of
vox
just FYI
ersatz
irked
nary a (care, sound, thought)
missive
tome
I [just] want to say that...
I think that...
at the end of the day (or) revisionist history
and thus, although x, I y...
I just threw up a little bit in my mouth
notes from...
INCESSANT caps THAT lose their EFFECT, BOLDED and ITALICIZED, sometimes RED
a day in the life
the life and times of...
innovative solutions for wound management
synergy
the caucasian "yo"
yada yada; yadda yadda
various citations of authority (such as Latin pomposities and French cartoonists)
wambam or wham bam or any variation thereof
thereof
poo/pee
to wit
AWESOME
sooooooooo
WTF
Rush Limbaugh/puff pastry
kerfuffle
It's a Wonderful Life/World (text or audio)
wait for it
oedema
hehehe
pretentious use of foreign languages
one. word. sentences.
the liberal media
meta
mainstream media
meh
i'm just sayin'
yawn
truth to power
vox populi
over exagerrating
spot on
rogue
I, for one...
LOL (>2/para)
lest
x and y notwithstanding
in comment threads: I LOVE what you said. (person promptly repeats "whatever was said that is soooo loved.")
"the fear shoots through me like an arrow piercing through to the other side and out again" (wounded similes)
back in the day
"i saw a coked up deejay get a blow job from bianca jagger." (just seeing if you're still there! it's a direct quote from jon stewart.)







*Yes, I am guilty of using a good number of the stuff listed above. Mea culpa, oy!

Saturday, March 7, 2009

Rhabdomyolysis


On Thursday, I was happy with my lab results but hurting a lot. I figured my body was following the contrarian attitude reflected in my investment strategies.


So yesterday, the nurse/pharmacist at the infusion center gave me a call. She's really nice and has a good grasp of my tenuous nature. I also remember that she was staring at me when her partner in crime was twisting my arm on Wednesday... and while I don't know the exact expression I was wearing, I can imagine. We had discussed the possibility of having to stop the daptomycin should my CK values rise -- I started out high. The possibility was supposedly "remote." It had happened, in her experience, only once out of hundreds of patients getting the antibiotic.


Guess what?


Rhabdomyolysis. (I have spared you the numerous misspellings!) Myopathy. A tiny bit of liver enzyme schtuff -- in addition to a sky high CK .


At least my pain had an explanation -- and that is a relief that I don't think folks who don't experience much pain can understand. Normally, there is nothing I can do, there is nothing to understand, there is certainly no promise of relief. But this should actually ease up as that junky antibiotic gets out of my system -- as it should, because my kidney function is *stellar*. "Normally," I have "renal insufficiency" -- something I don't really understand -- but, at the moment, my kidneys are **stellar**, bay-bee!


She offered two options regarding therapy. I could just quit and have the PICC pulled, or I could switch to vancomycin for two more weeks of infusion. I conferred with The Fredster and La Bonne et Belle Bianca Castafiore. (I have really missed her. She's been touring, belting out that L'Air des Bijoux of Boudon, but now she's home and constantly reminding us that "ah... je ris de me voir si belle dans ce miroir... ha... ha... ha!"). They put their pointy heads together and came up with a plan pleasing to all -- that is, to me, who just wants to be done with it all, and to the ID Doc, who wants me to have another 2 weeks of i.v. antibiotics.


So this is the plan: They want to see me Monday to retest. So I will make my decision based on the results! If my bloodwork continues to show improvement, in terms of infection markers, then I quit! It it is worse, okay, okay, I'll keep taking the stuff. If it's unclear... well, we didn't discuss that. I figure a coin toss?

Friday, March 6, 2009

impactednurse.com

"...the medical student could finally admit her thumb was stuck in the patient's vagina..."

I Spy

Books by the bed:
No Country for Old Men by Cormac McCarthy
Body of Knowledge by Steve Giegerich
The Deep End of the Ocean* by Jacquelyn Mitchard
The Gargoyle by Andrew Davidson
The Thurber Carnival by James Thurber
same kind of different as me by Ron Hall and Denver Moore
Lettres Persanes by Montesquieu
Cranford by Elizabeth Gaskell

*Already read. Note to self: Move to bookcase.

Magazines by the bed:
4 issues of Rolling Stone
2 issues of The New Yorker
1 Newsweek**

**Stolen from the Infectious Disease doctor's office. Now torn, in no condition to be returned. For shame.

Lotions at bedside:
Gold Bond Medicated Body Lotion
Pond's Dry Skin Cream
Crabtree & Evelyn Nantucket Briar Scented Body Lotion***
Bath & Body Works Moonlight Path Body Lotion

***Fred will not stay in same room with me if I use this. Comes in handy.

Items in metal star-shaped basket at bedside:
1 Non-functional remote control
3 bottles of Lumigan (1 opened, 2 still in box)
1 pair prescription dark glasses
1 tube Original Super Glue
1 pair prescription glasses, used "for parts"
2 rolls 3M Durapore 1.5 inch silk tape
1 Timex "heart monitor" wristwatch
1 promotional tape measure from David Jorgenson
1 emery board
2 balls of cotton
1 broken MP3 player
2 .1 fluid ounce bottles of Optive
1 key lock from Ace
2 AAA Energizer batteries
2 AAA Duracell Ultra batteries
2 lockets, one of which contains a 7.5 mg Endocet
1 Motorola Talkabout T6200 radio
3 woven bracelets, bought as fundraiser for Christian community of women in VietNam
7 Diphenhydramine Hydrochloride 25 mg capsules
1 Miacalcin Nasal Spray
1 Picture Hanger, "gift from your framer"
3 8 mg tablets of Zofran
2 book marks, cat pictures with 2009 calendars on back
3 pairs of ear buds
1 hair brush
6 lengths of stretchy cloth used to protect PICC line doojobies
3 paint brushes
1 tweezer
1 pair nail clipper
6 quarters
2 dimes
3 nickels
37 pennies
1 Regular Flavor Lip Balm
1 Week 4 35 mg Actonel, discolored
The earring I have been looking for****

****Beautiful gold earrings, gift from my best friend, memento of her trip home to Iran about a decade ago. She wrote me this week to say that she will be declaring bankruptcy -- she who is the most generous and hard-working person I know. I cannot wear the earrings right now -- cannot manipulate well enough yet.

The Ten Memos On My Palm (memo titles)
1. Teresa Smith
2. So-and-so's annual gift
3. CRPS/RSD Treatment Center
4. When is Lale's birthday?
5. DRUG LIST
6. John Sparrow
7. Call Mc. to schedule
8. Dr. B. 3/23/09
9. Call S. re: cymbalta
10. Zyvox

If I crane my head, what I can see of the Dining Room:
1 mission style dining room table
2 chairs
1 oak and hickory rocker, Amish
1 cat, Dobby
2 book cases full of cookbooks

Aromas in the air
2 large pizza pieces reheated in microwave, loaded
whiff of italian roast coffee

CK lab value, just called in by Infectious Disease Nurse, with instructions to stop the i.v. antibiotics:
"over 1,000"

Aroma not in the air, O Hallelujah!
2 large litter boxes, undetectable

Hung on the bedroom walls:
6 framed Rothko prints, of which I can see 4

DVDs that I can see from here:
Lord of the Rings trilogy
First season of Life
3 Neil Young concerts CD/DVD
2 Springsteen concerts CD/DVD
Complete collection of Deadwood
Complete collection SCTV
Complete collection Sports Night
U2, "Under a Blood Red Sky"

Visible VHS tapes:
3 Northern Exposure episodes
2 episodes of The Andy Griffith Show
2 instructional T'ai Chi tapes

What I can see on Fred's bedside table:
2 Church bulletins
2 bottles of hand sanitizer
1 bottle Saw Palmetto
indeterminate number of grocery store ads
kleenex box
2 pairs of scissors
1 alarm clock/radio
something from State Farm
1 back scratcher
2 pill bottles
1 box latex gloves
2 paperbacks
coffee mug full of pens
1 spray bottle of Biofreeze
2 pairs of reading glasses
Wad of napkins
Tool and electronic catalogs
1 wireless phone
1 wireless phone charger

Entertainment items:
1 television
1 DVR
1 VCR/DVD player

1 very, very small and beloved MP3 player

1 "personal" cd player

Furniture and schtuff:

1 Queen-sized bed
7 regular size bed pillows
2 12" foam bed "wedges"

2 bedside tables

1 computer table

1 metal cart

2 quilts, star patterned

1 fuzzy beloved throw under which I am burrowed, shivering

Commercials I don't understand or that bother me:
"The morning after your birth control fails, you are not alone..." -- Plan B
ExtenZe all-natural male enhancement. "Get bigger. Get wider. Get it now."

Man in the doorway asking if I need anything:
My sweet Fred
(Unfortunately, due to HIPAA -- or HIPPA, if you're WhiteCoat -- I am having to lie about the floor plan of The Manor. I wouldn't want to overwhelm my audience with accurate descriptions of its grandeur. Indeed, if you did not know any better, you might mistake our opulent digs for a tediously normal suburban domicile.)

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?

Monday, March 2, 2009

Medical Bills

Housekeeping, odds and ends.

Today, I received the bill from Pretty Hospital for the last go 'round of surgery: $48,092 and change.

In the same pile of mail was a personalized form letter (you know, they toss your first name into the text here and there for that *special* touch) -- from a former Chairman o'the Board to the same institution, suggesting that $420 would be an appropriate donation toward keeping Pretty Hospital more better.

The hospital bill will be paid by BCBS -- Bull Crap Bull Skeet of Tête-de-Hergé -- to whom I now pay $1300+ a month in premiums. I am exceedingly angry at the recent hike, coming as it does after another hike just 6 months ago. I *know* that I cost them lots of money. I also *know* they are trying to squeeze me out of my coverage.

I paid out all my deductible and out-of-pocket expenses by mid-February -- $5,000+.

Grrrrrr.

Also found in the pile of catalogs and grocery store ads? A bill from the Ecstatic Infectious Disease Group for $2185.11. I cannot explain exactly why, but yes, I am responsible for the full amount despite my excellent insurance coverage.

It surely is a fascinating game, the way the amounts charged receive odd payments here and there, way strange adjustments -- all to end up quivering with expectation in the balance column.

For instance, 08 January 2009 sees a charge of $1995 for VANCOMYCIN HCL 500MG, for which no payments were made, but a whopper of an adjustment is noted -- $1866.06, leaving moi with a line balance of $128.94. Now, THAT is an adjustment.

However, as I scan the dense Statement of Account, I note that, for other things, I am royally screwed: Elastomeric Infusion Devise "cost" $825 on, oh, let's pick... 15 January 2009, with a payment of $192.57 and an adjustment of $549.90, leaving this pauper with a balance of $82.53.

Hmmm -- but back on 01 January 2009, the charge for that self-same Elastomeric Infusion Device schtuff was $770, a charge toward which no payment was made, though there's an adjustment of $513.24, leaving this sucking hole of broke-ness with a balance of $256.76.

Strange and incomprehensible, these jumbled numbers. I do believe that that is the plan! Confound them with numbers and demands for payments. Ah... and there is no sign on the Statement of Account of the four payments I made while at the office, payments totalling over $1100.

Yesterday, I received a fairly chummy letter from Bull Crap Bull Skeet of Tête-de-Hergé, the verbiage of which seems to indicate that they've once again been caught with their paws in the cookie jar.

"As a result of Tête-de-Hergé Safety and Fire Commissioner Benevolent Guy's examination of reimbursement policies involving ambulance services (air and land),
Bull Crap Bull Skeet of Tête-de-Hergé has agreed to review and adjust certain ambulance claims.... " Yes, I am in the group of sickly poopheads who may be entitled to refunds of payments made to various ambulance providers (It is an odd and little known fact that in the villages around Marlinspike Hall, deep deep in the Tête-de-Hergé, 1.4 vehicles out of 3 are ambulances, or former ambulances.)

This is, of course, good news. Except that, as I read on, I am lost in the morrass of instructions about how to go about submitting a claim to get MY MONEY.

Someone somewhere has a sense of humor, though, because if I "have any questions about this letter or an Explanation of Benefits relating to an adjustment for an ambulance claim, please contact our dedicated Customer Service Unit." Ar! Ar! Ar!

Well, it is time to get hooked up to my little medicine balls of daptomycin. I've no idea how much it costs. What am I supposed to do? Decline the recommendations of one of the top Infectious Disease doctors in the region because I cannot spare the odd dollar? On the other hand, he is working in the dark -- assigning various antibiotics to a patient whose nefarious pathogens refuse to grow in the Pretty Hospital lab. I might get just as appropriate coverage by chowing down on moldy bread.

I hate money. Yes, even when I am in good straits, I hate money. It is nothing but a contractual construct, by means of which we condemn a good portion of the planet's human inhabitants to lives of drudgery and need.

Why not go click on the link for the Site Officiel du Parti Socialiste in the Tangent's List to your left? Yeah, that's right -- you've found a live one...

I will close with my favorite medical charge of the *day*: $4,344.00 for the Recovery Room. First off, they don't like it when I call it the "Recovery Room"; No, today it is known as the PACU -- post-anesthesia care unit, or something to that effect. More to the point, I was there for about an hour and a half. Unless they were doing heroic and expensive things while I was still fuzzy, they did precisely... nothing. Yes, they took vital signs and actually did hang a bag of vanco, but beyond that? Nothing. That's a whole lot of nothing.

Sunday, March 1, 2009

The Ketamine Coma Chronicles


Back on January 26, I made my initial post about Laura Beckett and her predicament, followed on February 1, by this. Beckett contracted MRSA pneumonia that apparently went systemic while undergoing the ketamine coma treatment for CRPS/RSD in Germany and then, wanting to return home to be treated for the infection, struggled to find the means. She is back and, I assume, having heard nothing attesting otherwise, is doing okay. The whole affair ended up sounding ridiculously litigious.

At the time, I was irritated by things people were writing in response to her unfortunate battle with sepsis, things that were inflammatory and needlessly critical, I thought, of this promising experimental treatment. Given that I battle MRSA myself, and have learned how pervasive it is, the uproar about the quality of care in Germany seemed directed by the lowest common denominator, that of playing meanly on people's fears. I have long been an admirer of Dr. Robert Schwartzman's work in the field and harbored an unrequited desire to undergo the protocol myself.

The only thing that bothered me, really, was a strong sense that the extensive waiting list might be driven more by financial bottom lines than by intractable pain. It is pure jealousy, I suspect. So what if some of the patients undergoing the ketamine coma are "only" afflicted in one leg or one arm and one leg... and that only for a few years. So what that they seem to be born into a family of relative means? There are also a fair number who got there by fundraisers and prayers... So what that some of the coma patients are undergoing the treatment for a SECOND time?

So what that I have been suffering since May 22, 2002, and now have this crappy, shitty syndrome in "all 4s" as well as in part of my face?

So what that I am not brave enough to take what money I do have and apply it toward a potential cure? So what that I am apparently in not enough pain to do whatever I can to alleviate it?

Now there is news of a death on the Mexican front of coma research, that of a young woman undergoing a second attempt with the regimen (her first in Germany), a young woman who spent much of her time helping others with CRPS. That doesn't make her death any more tragic, it just makes it terribly emblematic.

Informed consent lies at the heart of the whole mess, of course. No one has ever made the claim that allowing yourself to be put into a coma by use of a drug with inherent dangers is not without risk to life (I would say "limb," too -- but that's kind of ridiculous, in the case of CRPS). The risk of infection and, particularly, of pneumonia, has been explained with perfect transparency.

I am now going to write something that makes me gasp at my temerity: I believe that the work being done in Mexico is seriously flawed. Not in its science, for I am not qualified to make any such judgment. But in the way it goes about promoting itself... there is something smarmy about the slick brochure style of recruitment. I get the impression that the testimonials and videos
-- typically made by attractive young white women of means -- are there to gloss over the sense of risk and danger that might make someone definitively pause.

Still, innovators in any field tend to be charismatic and what seems questionable to me is just as likely to be simple optimism and confidence. Schwartzman and Kirkpatrick obviously care deeply about their patients, would never put them in a situation of untoward risk, and are hardly responsible for these recent negative outcomes. Even so, the fallout will not be kind and the criticisms may be impossible to answer due to their foundation outside logic. It had to happen sometime.

Friday, February 27, 2009

Andrea Gianopoulos

There seems to be a theme to these final days of February: Things that should not happen, that are not in the proper order of things -- things that weren't covered even in the small print of the contract.

Tony Tobin of the U.K. runs a Yahoo! health group that is information only about CRPS/RSD. He waxes and wanes as to when and what he posts. January saw only one message -- but February has been a flurry of activity. He doesn't judge the material he passes on although it is evident that most of it has passed through his savvy intellectual filters. He does not have CRPS/RSD but watched and learned and then became a virtual sponge for knowledge after his granddaughter was "afflicted."

So that's Tony.

He knows, it sometimes seems, everyone in the CRPS/RSD "community." He posted his 17th message this month about one of those people.

It is with deepest regret and great sorrow that I post this obituary. I have known Andrea and her family for many years and I am finding it hard to find words to express my feelings. So for now please just accept her obituary as my way of saying 'God be with you.'
Tony


Cutting through the blither-blather, here is the part that matters:

Andrea Lynn Gianopoulos

Andrea Lynn Gianopoulos, 26, of Lancaster, died unexpectedly on Wednesday, February 11, 2009 at Hospital San Jose in Monterrey, Mexico.

Andrea also moderated a Yahoo! health group, fighting fire with fire (and founded one other, of which, I think, she was the most proud --Fighting 4 Us ). In February 2008, she wrote a welcoming note:

Hey everyone out there in RSD land! I wanted to sent out the first
email of this group to get things going. I know there aren't a lot of
people in this group as of yet, but I want you guys to know that you
can invite ANYONE you want! The more people who know, talk about, and
read information on RSD, the better. So get talking people! Advice,
jokes, interesting news, WHATEVER! The more emails the better too!
Alright I'm going to get going but I will be here as your happy
moderator, ready to answer any questions or concerns. Till next time,
keep on Fighting!

Your happy moderator

Andrea

I am not proud of it but groups like this one are as fingernails scratching on the blackboard. In general, I believe that people in the kind of diminishing-to-the-self constant pain that folks with CRPS/RSD live with should not gather in groups greater than three, and probably should be supervised. Ankle bracelets. Muzzles.

Nothing good can come of the congregation of either drugged out Pollyannas who believe in silver bullet cures (One day, they'll find the cure for this Beast, this Monster! Fight on! Rah! Buy a bracelet! Use Epsom Salts to draw out the poison! HBOT! Sign a petition! Use lots of exclamation points and emoticons!) or bitter bitter sufferers who are not yet resigned to their intractable pain. They curse a lot, threaten suicide, and emotionally blackmail everyone in the group. Eventually.

It's sad and I see it happening in almost all CRPS/RSD support groups. This may be silly, but I have some tonal and linguistic red flags to which I try to pay attention: "scripts" instead of prescriptions, "perks" instead of percocet, spread of the urban legends about the purportedly high suicide rate among "RSDers" (many doctors contribute to the myth, unfortunately, including one of the foremost experts on the disease, also the balletic and oft interviewed doyenne, Cynthia Toussaint, now predictably stricken with fibromyalgia.).

Choo choo! Toot toot tooot! Derailed train of thought, once again.

I, The Retired Educator, do hereby lay claim to the Fog of Anesthesia, in the name of Isabella and Ferdinand, Catholic Monarchs of a united Spain...

Another of Andrea's final posts is so typical of the harried sense of anxiety that chronic pain creates, as the days' sufferings accrete and fold, fold, fold over and into themselves, like air into a delicate batter. What? I can't help it... the Food Network is on.

She sounds like such a sweet young lady, determined to help anyone she can, but a bit lost, too. Her train of thought is about as clear and straightforward as mine. Her expressive style reminds me of a recent blog post by the Doc at Ten out of Ten, wherein he classifies patients by their communication acumen. Thus far, he has exaggerators, ill-depicters, stoic [doods], vagueurs, wanderers, hystericals, no/buts, and the positive-review-of-symptoms.

Choooo! Andrea paid no attention to the perils of internet overinvolvement -- perhaps she had never been burned or taken under the bridge and beaten by trolls; Could it really be that she was just unwaveringly good, unspoiled, a true optimist?

Hey everyone,

Yesturday, I got a message from a man who really wants our help. I
will not tell you his name, but I will tell you that his girl friend
is really...REALLY bad off. In the first email he just sounded
angry, and said that the local group he belong to didn't help. At
first I thought he was saying he was in pain and it was my group
that didn't help him. I sent him a rather abrasive email reminding
him that if they were saying it was my local group, that I needed to
know who was taking the name of Fighting "4" Us and just using it to
their benifit.

Well he emailed me back. He told me that it wasn't my local group,
but that it wasn't good for her. He said this was for his girl
friend and he was just trying to find help. He said her PCP has
dropped her, and for some reason her doctor won't perscribe more
scripts. She has thirty days till the script runs out and you all
know what that means. She's going to go through major withdrawl, and
is already talking about suicide. I can't tell you the man or the
woman's name, but can you all do me this: remind me where your from?
If you're close to their area maybe I can get them to talk to you.

I suggested that she join this group, but that was in an email I
just sent so I don't kow if it will help. Just tell me where you
live and I'll see what I can do. Because we want to help our fellow
RSDers...right? Thanks all and I hope to hear from you soon...

Your always fighting moderator,

Andrea


Do you remember her obituary, way up above this word mess? Do you remember where she died? Yes, that's right. At San José Hospital Technological of Monterrey, Monterrey, México.

The research being conducted on the ketamine coma is taking place primarily in two places: at the San José Hospital in Monterrey, and Saarbrueken, Germany. Recently there was a mild uproar over a patient septic from MRSA (began as a pneumonia, which is pretty common in the treatment, but -- being MRSA -- didn't respond to antibiotics, then went systemic) -- that was at the German site.

Now we have this in Monterrey.

I'm just sayin'.

Because of the infections I have developed over the past year and a half, I had to drop the notion of either getting an SCS or a "pain" pump (intrathecal pump) or going for the gold and attempting to get on the ketamine coma waiting list (word is that it is a 2-year wait at present). Now, of course, I see horror-stricken faces when I broach the topic to my doctors -- the very idea that I would want to introduce more foreign bodies that might invite bacterial colonisation appalls them.

And my rumblings about the coma? They never really took me seriously. The sepsis of one patient and the death of another may be the death knell for this research.

And I don't know how I feel about that. It has been touted as a possible cure, and I believe 14+ people have gone into longterm remission. Here's a short blurb about it that I pulled from the informed consent paperwork for folks considering hopping on an air ambulance and flying off to Mexico:

The purpose of this research is to find out if an anesthetic called Ketamine
helps in the treatment of the Complex Regional Pain Syndrome (CRPS)...

If you agree to be part of this study, you will be given two drugs: Ketamine and
Midazolam that will put you to sleep. You will be asleep during five days by
means of continuous infusions (a quantity will be given continuously but slowly)
of these drugs. At the end of the five days the drugs will be stopped and you
will wake up. After the treatment you will take several tests to see if the
treatment worked completely, partially, or not at all. You will have more tests
every certain number of months during two years in order to observe how long the
effects of the treatment last.


On January 18, 2009, Andrea wrote in her MySpace blog:
Well as many of you all know by now I will not be going to Germany in February, but I am going to be going to Mexico! I will write in here and at the Fighting "4" Us myspace site (www.fighting4us.com) about it as much as I can, and I should have wrote in this more, but there was so many feelings, so many things that had to be done, so many things to think about that I just didn't have the time or energy to come online and work through this. I was working on Fighting "4" Us stuff, however, but more behind the scenes then anyhing else. But OH how wonderful our site will be when I get back. There will be places for members to come on, it will have it's own blog....But that's just a preview of all the good things that will happen. But for now, some thoughts on going to Mexico. When I first found out that I would be going to Mexico, and when, I was overjoyed. I'm still overjoyed....but now the fear has set in. I have so many things I want to be and do...I have an entire list of them. I'd rather not take up so much room now, but when I start to check them off (and I will) you will hear about it. I'm just "a ball of nervous" as someone I know said. I guess that's all I have right now. Blessed be!

Someone has posted a banner on her MySpace page that reads: "Andrea doesn't hurt anymore."

Bless her heart.

Thursday, February 26, 2009

Brought to you by the letter C

In my world of acronyms for illness, things starting with the letter C have an unhealthy predominance.

I mean, it's hard to ignore CRPS -- not for one hour, one minute, sometimes it cannot be dismissed for as long as a second. Today is such a day, but I know that it can't stay this bad, that if I can break the cycle, or just get through it to the other side, it should "ratchet down" instead of up! Yes, a socket wrench just might be involved...

But that is not the "C" that is really bitching at me right now -- no, that would be the C-reactive protein value that my infectious disease doctor spoke with me about by phone this afternoon. It's 68. That's apparently way too high. In fact, the closest I have come to that during all these months of infection and inflammation is 18.

We went trucking off to another doctor's appointment today -- to see Dr. PainDude, my pain management guy. He is a physiatrist, a doctor specializing in what is called Physical Medicine. In other words, he is so bored by me that I have not actually seen him, except to shake his smarmy hand, in almost 6 months. Instead, I see his Nurse Practitioner. I have decided to be thrilled by that, after spending *way* too much time being pissed about it. Why? Because she is simply better than he is. She has made innovative changes that have positively impacted the quality of my life.

She has made innovative changes that have positively impacted the quality of my life.

I cannot imagine a more wonderful thing to say about someone who is managing an aspect of my health care (with my "partnership," yadda yadda). Really, I can only count three or four people that I could honestly put in that category. Everyone else is very competent. These others, though? These three or four? They are so beyond competence -- they have some aspects, each according to each, of visionaries. Beyond: that's really the right word. They see beyond where I am stuck today -- sometimes seeing trouble, sometimes seeing that I will come out the other side of whatever nonsense is bothering me -- unscathed.

The Infectious Disease people are not on my team. I just cannot resign myself to the notion that they are a permanent fixture. Still, I am spending way too much time at their offices and decisions are being deferred to them by some of the people I am touting as "visionaries."

They're okay, I guess. The trouble I have with them is that they are excessively reactionary. If I were to even suggest that my left nostril itched, they would order stat blood cultures x 2.

So at first, I was nonchalant at having a C-RP of 68. No biggie. But the voice on the phone kept saying "quite high, quite high, quite high." And the voice tossed in a high white count. (The incredible news? My sed rate was TWO!)

Then this person lied to me. My surgery was ten days ago. "Sometimes it rises after surgery, so we will check it again next week. It ought to start going down by then." J'étais tellement déçue.
My surgeon had already checked the C-RP in hospital and it was something like 14 -- he was pleased. That was, I think, about 48 hours out... *and* he explained to me that the reason people were deferring some decision-making about infection to the C-RP value was that it was very responsive, time-wise. That is (I am clear as freaking mud today) -- it reflects the current situation pretty well. He was further encouraged because the results were trending downward.

So ten days after surgery, one shouldn't still be getting values that have been skewed by the trauma of surgery itself. And should a change be effectuated, it won't take anything like a week for that to be reflected in the lab value.

It's a small thing, this lie. But I don't like it; It does not inspire confidence. Tell me instead how we are going to proceed should this mean I'm still "infected." Tell me, above all, that daptomycin is the right antibiotic for me to be infusing into my vein at night. Tell me how you know that without having recourse to a positive culture result. Are you making the assumption that treating for gram-positive bacteria is worth ignoring those sly gram-negative guys? Is it the positive MRSA that I had a few months back? Come on -- the intra-operative cultures did NOT grow it! It's just in my freakingly cute incubator of a nose. And one armpit -- a pit that had issues. (I'm just sayin'. I kept it as clean as possible under very difficult and hygiene-challenging circumstances. And then along came my friend Hibiclens...) It tested negative twice in the past three weeks.

Toot, toot! My train of thought runs away again. (As always, a very grateful nod to James Thurber.)

Before I regain the track... Sam-I-Am just got his comeuppance. I had been gnawing on the stray crust of bread on a plate next to the computer -- bread that was, mind, well-spread with hot mustard, all the better to go with the sliced turkey. Sammy grabbed the remaining piece of bread, fairly *slathered* with that mustard, and began his escape from the room. Like a cartoon, he came to an abrupt and startled halt as the mustard registered on his rough pink feline tongue. He dropped it -- mustard side down, of course. Oy, my carpets! He would pick the only eighteenth century Karabagh rug in the whole of Our Manor, Marlinspike Hall. Imagine the result of hot yellow mustard on this, one of The Captain's most prized antique rugs of the Caucasus:


(Somehow, despite it being "correct," I cannot bring myself to call this a caucasian rug.)

The CCCaptain. The CCCaucasian rug. CCCRPS. CCC-reactive protein. CCCCCCCrraaaapppola!

I'd best stop this evidence of a meltdown before I truly get lost inside the alphabet. I am thinking of settling down with Fred and taking in a flick or two... popping some illicit ibuprofen to kill this fever (100.5!)... maybe popping some corn, too.

I've neglected to write about the biggest C of all, cancer -- because I am tired and sad of thinking about it. In addition to its presence here in the blogosphere -- for young Henry died yesterday and my thoughts are with his mother, father, sisters, extended family, and ubiquitous friends -- it is striking down people in our real lives here, deep, deep in the Tête de Hergé. All of these people are valiant and victorious in living good lives and modeling a good death.

I received my copy of Hospitality today... Ed Loring wrote, in an article that includes the news that Murphy's cancer is back (Our Cancer Journey Number Four, he calls it) -- "Time comes. Time goes. We are born. We die. As Dylan Thomas grieves past grief knowing "that good night" is somewhere amid the stars, he laments for me and maybe for you:
Oh as I was young and easy in the mercy of his means,
Time held me green and dying
Though I sang in my chains like the sea."

He, Murphy, and Hannah attended Jack Edward in the days and hours before he was killed. Jack said to them that he was prepared for death but not ready for it. And so, of course, Ed cannot resist asking us:

"How about you? How do you want to die? Are you prepared? Where you gonna run to when the FBI eyes you?"

I cannot think of Murphy without thinking of Lucy.
Enough! Enough, already!

Wednesday, February 25, 2009

Intrathecal baclofen for CRPS-related dystonia

Pain. 2009 Feb 18. [Epub ahead of print]

Intrathecal baclofen for dystonia of complex regional pain syndrome.

Rijn MA, Munts AG, Marinus J, Voormolen JH, de Boer KS, Teepe-Twiss IM, van Dasselaar NT, Delhaas EM, van Hilten JJ.

Department of Neurology, Leiden University Medical Center, P.O. Box 9600, 2300 RC Leiden, The Netherlands.

Dystonia in complex regional pain syndrome (CRPS) responds poorly to treatment. Intrathecal baclofen (ITB) may improve this type of dystonia, but information on its efficacy and safety is limited. A single-blind, placebo-run-in, dose-escalation study was carried out in 42 CRPS patients to evaluate whether dystonia responds to ITB. Thirty-six of the 38 patients, who met the responder criteria received a pump for continuous ITB administration, and were followed up for 12 months to assess long-term efficacy and safety (open-label study). Primary outcome measures were global dystonia severity (both studies) and dystonia-related functional limitations (open-label study). The dose-escalation study showed a dose-effect of baclofen on dystonia severity in 31 patients in doses up to 450mug/day. One patient did not respond to treatment in the dose-escalation study and three patients dropped out. Thirty-six patients entered the open-label study. Intention-to-treat analysis revealed a substantial improvement in patient and assessor-rated dystonia scores, pain, disability and quality-of-life (Qol) at 12 months. The response in the dose-escalation study did not predict the response to ITB in the open-label study. Eighty-nine adverse events occurred in 26 patients and were related to baclofen (n=19), pump/catheter system defects (n=52), or could not be specified (n=18). The pump was explanted in six patients during the follow-up phase. Dystonia, pain, disability and Qol all improved on ITB and remained efficacious over a period of one year. However, ITB is associated with a high complication rate in this patient group, and methods to improve patient selection and catheter-pump integrity are warranted.

Tuesday, February 24, 2009

Dobby


The Fredster just emailed me [from his office in another wing of the Manor, deep deep in the Tête de Hergé] this picture of Dobby. I have previously attempted verbiage about his incredible gaze, and this is maybe the best photographic example. According to Fred -- ATF -- Dobby simply sat in the box, staring at him, for roughly 20 minutes.

The fog of appreciation


This photograph was taken by Caroline Tallmadge.
Dr. Tallmadge is staff anesthesiologist at The Ottawa Hospital Civic campus.


I don't know if there is a scientifically proven relationship between increased stupidity and time spent under general anesthesia, but I certainly suspect one... and present myself as Exhibit A.

Three times this morning I have hauled myself out of bed, into the wheelchair -- the whole while calling upon the Grace of God and invoking the Names of Various Allied Deities and Cohorts -- out to the kitchen, the feline triumvirate trotting along in my wake, only to lose myself upon arrival -- feeling much as you might, right now, lost in an uncharted sentence.

My pain levels are out of control. I have a pharmaceutical arsenal that I can, and maybe should,
use to bring things in line, but I am also too easily woozed. (Okay. We have "woozy," yes? Then we also ought to revel in the intransitive verb "to wooze." Right? Right!) In my war against the woozies, drugs are the enemy. Still, the battlefield being my tenuous body::mind continuum -- consortium? consortia? keiretsu? -- there is an inherent obligation to preserve, protect, and defend the Constitution of the United States.


Oops.


I made a request of the anesthesiologist last Monday that she seemed to regard as odd: to tell me in advance when she was going to launch me into the hinterlands*. This last surgery was the fourth major operation in six months and, paradoxically, the prospect of "going under" was increasingly terrifying. I tried to share this feeling with The Fredster but he chose to address it as a foolishness (not out of meanness... more out of denial... at the oddest moments he will tell me of whole days spent at my bedside, me unconscious and on a ventilator, of doctors warning him that I likely would die in the night, and how I wish I could take those memories away!).


Anyway?


Back on December 22, the last go 'round, I was in the middle of a private panic when I suddenly felt consciousness draining away -- and terror is the word, was the word. I need the anchor of knowing, of being prepared, of time to say "thank you." Odd, the thank you thing. It's so important to me, to be able to thank the doctors and nurses before I -- before I went wherever I was going. To the hinterland, behind the borders of the river. In December, despite what I am sure were major doses of amnesia-inducing drugs, I woke to the same panic that that swept me away hours before, and now -- 7 weeks later, the feeling really had not passed.


It felt like my dirty little secret, my personal island of insanity. I've had two "near death experiences" -- profound, even *gasp* very profound! -- and those experiences serve as anchors of calm, so the panic that has recently taken hold is not so much about death as it is about... saying thank you, and knowing that my thanks have been received.


And so it went that this slightly scoffing woman, standing behind my head and looking more at her monitors than at my scared face, gave me a good 15 seconds of warning and became the person to receive my gratitude.


I wonder if she might know what I keep going to the kitchen for?


Food seems likely. Or cat treats? Coffee? Tea? Cola? Juice? Medicine ball? Something to defrost? Or am I meant to go beyond, down the ramp to the laundry room? Hey. That's most likely... so I should turn back and grab a load of dirties!


In all seriousness, my cognitive abilities have taken a big hit. I cannot easily concentrate on a movie or for more than 10 minutes or so of reading. My memory seems impaired and my mood is particularly depressed. I do believe there is something akin to a "fog" that's directly attributable to anesthesia -- but I don't have the wherewithall to research it!


Really? I need to be imbued -- again, and now, in normal times, in this last bit of "ordinary" time -- with that pre-operative sense of gratitude**.



*hinterland in Wiktionary, the free dictionary:
The hinterland is the land or district behind the borders of a coast or river. Specifically, by the doctrine of the hinterland, the word is applied to the inland region lying behind a port, claimed by the state that owns the coast. [Such a beautiful word for the topography of the layers of consciousness, particularly when one tires of references to the peeling onion.]


**One can pay back the loan of gold, but one dies forever in debt to those who are kind. -- Malayan proverb (I love quotation sites -- This was the very first result when I searched quotegarden.com for "Thank you" quotes and isn't it perfect? Would that I could so distill my chatter...)

sometimes a sister needs a brother needs a god

There are ghosts out in the rain tonight/High up in those ancient trees/Lord, I've given up without a fight/Another blind fool on his knees/And all the Gods that I've abandoned/Begin to speak in simple tongues/Lord, suddenly I've come to know/There are no roads left to run/Now it's the hour of dogs a-barking/That's what the old ones used to say/It's first light or it's sundown/Before the children cease their play/When the mountains glow like mission wine/And turn grey like a Spanish roan/Ten thousand eyes will stop to worship/And turn away and head on home/She is reaching out her arms tonight/Lord, my poverty is real/I pray roses shall rain down on me/From Guadalupe on her hill/But who am I to doubt these mysteries/Cured in centuries of blood and candle smoke/I am the least of all your pilgrims here/I am most in need of hope/She appeared to Juan Diego/She left her image on his cape/Five hundred years of sorrow/Have not destroyed their deepest faith/But here I am your ragged disbeliever/Old doubting Thomas drowns in tears/As I watched your church sink through the earth/Like a heart worn down through fear/She is reaching out her arms tonight/Lord, my poverty is real/I pray roses shall rain down on me/From Guadalupe on her hill/But who am I to doubt these mysteries/Cured in centuries of blood and candle smoke/I am the least of all your pilgrims here/But I am most in need of hope/I am the least of all your pilgrims here/But I am most in need of hope




Thanks, TW, for... well, you know.

Schooling me.

Letting me steal your photos, regurgitate your thoughts. No, that's not true. I am better than that. It is the shock of recognition. Here. There. It amazes me.

photo credit: American Idyll