Saturday, March 7, 2009


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

"...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?
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 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'.

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+.


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.