Showing posts with label CRPS RSD. Show all posts
Showing posts with label CRPS RSD. Show all posts

Sunday, December 14, 2014

Dr. Hackenbush! Calling Dr. Hackenbush!

Originally published back in the holiday season of 2008, shortly after our summer discovery that my prosthetic shoulders were harboring pathogens, this piece returns as a 2014 holiday tribute to the medical nitwits currently in my life. Among the nitwits this go-'round? Auxiliary personnel in the billing department of the same hospital depicted below. Also, the various board-certified neurologists who are gleefully passing the buck to their neurosurgical colleagues. Again, this is a repost, Dear Reader, as the Surgical Shoulder Wars are now ended, the bacteria having defeated even the inimitable and marvelous Doctor ShoulderMan.  But the hilarious conversations with medical professionals continue, even if the laughter has become markedly insincere.

*******************************************************************************************

Fred drove through driving rain and piles of slick wet leaves late yesterday (early for us!), so as to get me to the pre-admission registration process at the hospital -- before they stopped taking patients for the day.

No problem. Ruby the Honda CR-V putt-putted happily, veering down the hilly streets, passing the elegant homes on the tree-lined way.

We even managed to snag the premier gimp parking space, and this at a parking deck notorious for being full -- and gimp spaces usually taken by remarkably spry looking folk, and cars without placard or "disabled" license plate. Okay, okay, the correct line is supposed to be something like: "You can't tell by looking!" (Shit, you sure can... It takes a gimp to know a gimp.)

So, Dear Reader, what am I supposed to do when, despite my best efforts... Okay, okay, jeez, you are a tough one, Dear Reader. What am I supposed to do when, after a few lame attempts to keep things on the straight and narrow, the nurse in charge of registering me for Monday's major surgery makes mistake after mistake?

Here is a sample of our stellar communication, verbatim:

The Nurse: When did you last have an EKG?
Me: In August, the last time I was here.
The Nurse: And when was that?
Me: In August.
The Nurse: And where can we get a record of that?
Me: Ummm, here? In my medical records? (See? She managed to get to me -- my "intonation ascendante" is a dead give-away. Ar! I used to get hit on the head with a ruler whenever my "intonation ascendante" gave way. What was that dear old teacher's name? I can't remember, in large part due to his pedagogical concussing, but I loved him.)

[Choo choo! Train of thought! Choo... Back to the scene of the crime... ]

Me: Ummm, here? In my medical records?
The Nurse: Hmmm. Maybe in your medical records.

Then we tried to exchange the information about my last echocardiogram. Should be simple enough. Doctor's name, address, phone and fax numbers, date of the test.

And I have to say that it sort of mattered a lot to me for this information to be correctly received, given that they discovered an aortic arch aneurysm via that test. I had even had a serious bout of chest pain the night before, during which I was unable to banish the thought that, well, "this could be it." I made it from the bed to the wheelchair and then out to Fred's office, and he got me the under-the-tongue stuff. Three of those, five minutes later, I was fine. Still. I cannot banish that fear, not entirely. And so, I faced The Nurse full of conviction in the wonderful potential of our communication skills.

The Nurse: Where was the echocardiogram performed?
Me: In Dr. Rosenstein's office, as an outpatient. He's in the Doctors' Building over at St. Mellifluous. Anyway, it was August 22. 9:30 AM. It showed my usual aortic insufficiency due to a congenital bicuspid aortic valve. Oh, and they found a... dilation... of the aorta, where the aortic arch attaches... so, yeah, that's Dr. Rosenstein, over at St. Mellifluous. His phone is 555-555-5555 and, surprisingly, that doubles as his fax.
The Nurse: Well, I don't know what to do.
Me: Pardon? Can't he just fax the report to you? That's 555-555-5555...
The Nurse: I hate to be the one to break it to you...
Me: What? Break what to me? Does this mean I can't have the surgery Monday? They went ahead back in August, just 3 days later, on the 25th... Why is it different this time, why? [Blither and blather, generalized anxiety bursts loose and flies around the room, backward.]
The Nurse: Dr. Schrödinger passed away last week.
Me: Who is Dr. Schrödinger? He did?
The Nurse: It was very sudden, a massive heart attack. I am sure all of his patients must be terribly upset.
Me: I'm sorry for your loss? [And there it is again -- she's screwing with my intonation encore une fois, de nouveau.]
The Nurse: So I don't know what has gone on over at his office -- hmm, maybe the staff can dig up your records. I'll give Judy a call.
Me: Judy? No, no, I think we have a misunderstanding. My cardiologist is Dr. Rosenstein. And his nurse is Linda...
The Nurse: Well then, why did you bring up Dr. Schrödinger?

It was a rough afternoon. I will say this for her -- she got my blood on the first stick, for which I remain grateful. A few things worry me -- for instance, she didn't give me the red arm band I usually get -- it has something to do with blood, the blood bank?

Wow, even away from her, she screws up my intonation, long distance.

Also, I did as instructed by Dr. Boutiqueur, and emphasized my need for stress-dose steroids (adrenal insufficiency) pre-op -- intra-op -- and post-op! I don't think it was even received by any of her grey cells. "That's okay," thought I, "I will just bring it up again when I speak with anesthesia."

Except -- I did not get to speak to anesthesia, despite the fact that my intubations have been difficult
-- to the extent that, at this same facility, back in 2005, they broke three of my front teeth trying to get the damned tube in. Yes, that's right. I have had a slight attitude about their anesthesia department ever since. They paid for the dental surgery, and for the very creative partial that had to be created. But I forgot to make any arrangement for the FOUR other partials that have had to be made. Some major, and ill-afforded, pocket change has been thrown at what looks to be a never ending problem.

Also, the good anesthesia rep is supposed to tell me which of my many meds I can take come Monday morning. The Nurse asked me to take whatever I "thought was right." Okie-dokie. So I am going to dig up the green folder from my orthopedic surgeon's office for the last go around, in hopes that I have the notes from the anesthesiologist about meds.

Because I've a sneaking suspicion that what "I think is right" is probably wrong.

I wonder who it was who cleaned out all sorts of unnecessary paperwork from my office a few months back? Ar! Must have been the same idiot who thought ShoulderMan victorious in the Shoulder Wars.

In summation [Oh, sit down and stop clapping.]: Major confusion about the tests done back in August, and from where the results can be obtained -- and whether the ordering physicians are even alive; no blood being readied for surgery, despite the fact that, back in August, I had a hemoglobin of SIX after surgery; no interview with anesthesia about stress-dose steroids and historic difficulty with intubation.

She jumped all over the MRSA in the nares issue, though. Thank goodness. Whew. What a load off...

Good grief! I got MRSA at the hospital to begin with, and the Fredster absolutely refuses to don the yellow dress and blue gloves -- not only do they offend his fashion sensitivities, but he overheats. There is also a tendency on my part to NOT ask for nursing assistance when I really do need it -- I hate to make someone get all that isolation gear on for what can seem awfully minor (bedpans, pain meds, help turning -- hey, you try it without using your shoulders/arms!).

So this weekend, my ID doctor has prescribed some antibacterial ointment that I am to stick up my nose. Excuse me, up my nares.

My question? If this antibacterial ointment kills the MRSA... why is it considered resistant to antibiotics -- or even at all virulent?

I forgot to mention that The Nurse's understanding of CRPS/RSD, which initially seemed quite promising, ended with her asking about the acronym: "How do you get 'RSD' out of rheumatoid arthritis? I usually say 'RA.'"

Me, too, when I am talking about rheumatoid arthritis!
Sigh.

Calling Dr. Hackenbush, calling Dr. Hackenbush!
(Below, please find the lyrics to Dr. Hackenbush, a musical number that was dropped from A Day at the Races due to concerns about the film's length.)


CHORUS:
So this is Dr. Hackenbush, the famous medico,
You're welcome, Dr. Hackenbush...

HACKENBUSH:
If that's the case, I'll go

CHORUS:
Oh, no, you mustn't go...

HACKENBUSH
Who said I mustn't go?
The only reason that I came is so that I can go.

I'm Dr. Hackenbush,
My medical standing's very high,
Well, anyways, ladies and gentlemen, I
am Dr. Hackenbush

CHORUS
He's Dr. Hackenbush...

HACKENBUSH:
I'm Dr. Hackenbush,
As a matter of fact, to be exact,
I'm Dr. Hackenbush!

FEMALE SINGER (Judy?)
I'm sure that they'd all like to hear,
Some facts about your great career

HACKENBUSH
Although my horn I hate to blow,
There's one thing that you ought to know:

I'm Dr. Hackenbush
Which all my friends will verify
Well, anyways ladies and gentlemen, I
am Dr. Hackenbush

CHORUS:
He's Dr. Hackenbush

HACKENBUSH
I'm Dr. Hackenbush,
You never would guess, but nevertheless
I'm Dr. Hackenbush!

For ailments abdominal, my charges are nominal
Though I'm great for I've a rate for tonsillectomy,
Sick and healthy, poor and wealthy, come direct to me
"Oh, God bless you!" they yell
When I send them home well,
But they never, no they never, send a check to me.

I've won acclaim for curing ills, both in the north and south,
You'll find my name just like my pills in everybody's mouth;
I've never lost a case...

CHORUS:
He's never lost a case...

HACKENBUSH:
I've lost a lot of patients, but I've never lost a case!

My diagnosis never fails, I know just what to do,
Whenever anybody ails, I'm sympathetic too,
My heart within me melts...

CHORUS:
His heart within him melts...

HACKENBUSH:
No matter what I treat 'em for, they die from something else.

When your nerves start to rock, put your faith in your doc,
When you're sick he will stick to the end,
With the possible exception of your mother,
A doctor's a man's best friend!

CHORUS:
Yes, a doctor's a man's best friend!

HACKENBUSH:
A doctor's a man's best friend, whoa-oh,
A doctor's a man's best friend,

HACKENBUSH & CHORUS:
A doctor is a man's best friend!

HACKENBUSH:
Right or wrong, wrong or right,
Night and day, day and night,
On his call you can always depend;
With the possible exception of your mother and your father
And your uncles and your brothers and your nephews and your nieces
And your sisters and your cousins, whom you number by the dozens...

HACKENBUSH & CHORUS:
A doctor's a man's best friend!

Thursday, May 15, 2014

The Disambiguation of Pain (produced the Pisan Cantos): A working theory

What follows is a live-action demonstration, from July 2009, of how to control pain using the art of distraction.

To employ this method at home, you will need internet access and some sort of writing platform (a blog, spare bits of tissue, rice paper with ink and paintbrush, etc.).  Also, if you have a legal and appropriate pharmaceutical at hand, you may take it, but take the lowest necessary dosage, decreased by half.

[Your first few times employing my proprietary blend of distraction, though, consider not using any medication at all. It may not be necessary to your relief.  Not while you have a brain!]

Tell yourself, aloud:  "I will feel better in 15 minutes. 20 minutes, tops." For a successful outcome, position yourself, your internet-accessed device, and any external writing paraphernalia (beware the literati cops!) within comfortable reach. Place everything with such care of thought that should you drift off in a cloud of painlessness, nothing will be harmed. That means, for instance:  no hot beverages!

There.  You are all set.  Breathe in, breathe out, slowly.  Engage your creativity and release your inhibitions and prohibitions.

You are about to disambiguate your pain.  Bon voyage!

***********   ***   ***********   ***   ***********   ***  ***********   *** 



Ezra Pound

I had a night full of crazy nearly-nightmarish dreams and woke to the indescribable pain caused by Uncle Kitty Big Balls licking my CRPS-stricken right big toe. [He's obsessed with toes... maybe because we had to have one of his chopped off to save his sorry hide.]

I don't plan to scrape UKBB:-:Pickle Head:-:Little Boy off the wall anytime soon. Yeah, go ahead. Report me! Turn me in! Drag me off to the slammer, the big house, get all touchy-feelly about mistreatment of cross-eyed, streetwise, stinky-pooping cats.

Lately, UKBB:-:Pickle Head:-:Little Boy has accumulated even more monikers, none of which have definitively stuck, alas. Bugsy. Gus. (I was watching, for the umpteenth time, Lonesome Dove. I have an enduring love for Robert Duvall, and had just announced that I really, really wanted a Gus of my very own, when UKBB promptly announced himself with that weird, raspy half-*ack*-*ack*, half-mee-row that also managed to denote a scruffy beard and teeny-tiny cowboy hat.)


Also: Aeolus -- Greek God of the Winds, for reasons that are air-borne and truly, truly unfortunate. Dirty Harry.

Ah, the serendipity of internet searches and plain old, errant, mindless keyboard clicks. As I began to write about UKBB and his assault, it occured to me that I did not know many synonyms for jail, prison.

What?

Is that not normal mental function? Don't you jump from allusion to allusion, gleefully following each verbal twist until your childlike wonder is definitively shown up as your unique form of mental retardation?

The first thing that popped up was "Yahoo! Answers," where someone had posed the same query -- wanting some slang for prison. Pen, pokey, cooler, lockup, clink.

Not terribly familiar with this Yahoo! feature, I decided to look into what pressing questions were on the mind of the world wide web citizenry:

What's wrong with my cat?
In Cats - Asked by Aida-Christine - 11 seconds ago

How is the average speed solved using the ticker tape?
In Physics - Asked by Dulce Amor - 11 seconds ago

What does human context mean in terms of the elements of drama?
In Words & Wordplay - Asked by LittleMiss - 15 seconds ago

HIS and STORY = HISTORY. should it be HER and STORY = HERSTORY?
In Gender & Women's Studies - Asked by Bored Observer - 16 seconds ago

Where can I buy thermal printers for embossed printing on invitation cards?
In Printers - Asked by Mitch - 16 seconds ago

I cant check my email. Some help please?
In Other - Yahoo! Mail - Asked by infantry_wife - 23 seconds ago

Do I need to be in the center of my surround sound?
In Home Theater - Asked by kc17170 - 24 seconds ago

Are muscly calves genetic?
In Diet & Fitness - Asked by єℓιzα©™ - 24 seconds ago

How do you Say this in Japanese?
In Languages - Asked by Areazel - 27 seconds ago

Whats a good acne medication or cream or something !?
In Other - Skin & Body - Asked by Selah - 29 seconds ago

Production of atp in prokaryotes?
In Botany - Asked by yashwanth - 33 seconds ago

What is the best FREE MUSIC MIXING softwware to download?
In Software - Asked by JasonC. - 37 seconds ago

After a tattoo is pretty much healed is it ok to use cocoa butter without fading?
In Tattoos - Asked by Angie - 37 seconds ago

A quetion about herbal essence shampoo?
In Hair - Asked by BoPeep - 43 seconds ago

How much are Alternators for a 1998 dodge 1500?
In Dodge - Asked by iaskquestions - 43 seconds ago

Is male pregnancy possible?
In Other - Pregnancy & Parenting - Asked by Phylisia Y - 43 seconds ago

What album tracks do you always skip when listening to your favourite bands?
In Rock and Pop - Asked by mark j - 45 seconds ago

What will the human race look like in 1,000,000 years time?
In Other - Social Science - Asked by x-jessicalouise-x - 47 seconds ago

Can you guys use the search feature?
In Yahoo! Search - Asked by Artanis186 - 47 seconds ago

Pls help me with my homework?
In Homework Help - Asked by oyoboy - 49 seconds ago


It's enough to put Darwinian theory in doubt.

So, I am almost in danger of losing the train of my thought, the choo! choo! choo! so dear to coherent conversation and logical composition. Ah, but my darling Reader-Friends, after years of living with an ADHD-driven sweetheart, a cartoon diva, and the neurotic feline Sam-I-Am -- not to mention the impact of inhabiting the Tête de Hergé? I got a mind like a steel trap.

Okay, Beloved Students, let's take a moment to assess things.  
Have you noted The Method in the madness of my various circumlocutions? 
Observe:

Feel pain; Immediately invoke the pain management technique of DISTRACTION.

Not quite there yet, FREE ASSOCIATE; Discover a strong stream of consciousness around the concepts of PRISONS, CATS, and ROBERT DUVALL.

Effective pain management requires a more narrow focus, for which I FISH, using the apparently contrarian method of SEEKING THE SYNONYMOUS.

In so doing, the hard-and-fast rule of "when in doubt, Google," returns the oddly appropriate suggestion of SEEKING THE SYNONYMOUS by visiting Yahoo! Answers.

Having achieved considerable pain relief by such perfect use of DISTRACTION, toss in some deep breathing exercises, maybe a coffee and cannoli.

EXTRAPOLATE WITHIN THE CONFINES OF THE SYNONYMOUS.

This almost brought me to the edge of disaster (located near the stream of consciousness), even unto the brink of the aforementioned Darwinism.

Ah! But as Ezra reminds me, daily:


When the mind swings by a grass-blade

an ant's forefoot shall save you

the clover leaf smells and tastes as its flower.

--from LXXXIII

And so it is that I arrive... at pain relief by DISTRACTION, and you, my darling Reader-Friends, once again scratch your heads and roll your eyes, wondering about drug abuse, mental stability, and why I can't just stave off CRPS' impact by sheer force of will.

That's okay, I understand.
But -- the process is not over. There is much more to this pain management technique of DISTRACTION.

My mind now calm, even if my body still occasionally gives in to the odd writhe, and the voice to disembodied moan, I complete things. I "choo" the "choo," as it were! (You are not successfully circumlocuting if the ends never meet.)

Usually? I don't trust you or like you enough to show you the ending, the meeting of the circle ends. You don't know of my love for Euclid, and my secret glee, inasmuch as I am a writer, of the writerly things I find everywhere:

A circle is a special ellipse in which the two foci are coincident. (Wikipedia)

Wikipedia frequently offers its efforts at disambiguation, in which I delight, for I will refuse all efforts at disambiguation of my own text, while hungrily acquiring the nit-and-grit of that dialogue of contrariness. To wit, I usually would not go on to share that an investigation of ellipse necessarily includes a parse of its use as a rhetorical figure:

a rhetorical suppression of words to give an expression more liveliness.

Now, really, friends, isn't that a pure HOOT?! Coming, as it does, from the figurative pen of Retired Prof, Profderien? A freaking SUPPRESSION of words! Mwa-ha-ha-ha!

Okay, to be honest, as this has been composed in actual time during an actual episode of severe pain, I took my breakthrough pain medication (15 mg Endocet) about 40 minutes ago.

DISTRACTION as an effective pain management technique? Maybe for those perfect souls who are into suffering as means of spiritual purification. Maybe for those stellar people whom I truly admire, whose minds' natural ability to focus does indeed allow for it, like Jeisea, down under at her blog crps/rsd: a better life -- though such sites tend to irritate me because of the pride of suffering (no, I won't unpack that -- you know what I mean -- don't be coy). Also, I am jealous.

I used to be one of both of those -- seeing an overarching good in learning to live with severe chronic pain and able to hone my mind's eye to the razor's edge of a laser beam, and so hope to escape that damned pain.

But no more, unless I have to. When did the "I-have-to" Era arrive? I think when the reality of my immunosuppression and the seriousness of this apparently untreatable osteomyelitis finally made me see that the Ketamine Cure (think Keystone Cops) was too dangerous for *me* to try, that I'd never be accepted in a trial, that the SCS and pain pump were no longer available to me as pie-in-the-sky options.

Now? I try to write through it, perform it. But I also take the medication prescribed me, as it is prescribed me. Well, hmmm, that's a lie. I take less pain medication than my doctor knows or suggests. I force myself through monthly "drug holidays." I try to explore adjunct pain medications, so as to narrow the focus and thereby treat the pain more *precisely*. Mostly, that has come to mean use of baclofen to ease spasm and tics, and ibuprofen to attack inflammation.

And so, let's see: through writing this weird blog and the work that goes into it, there is significant distraction from pain, even though it usually means blogging on that very topic. Writing has become a process undertaken while waiting for conventional pain medications to kick in and do their job, or it is a Hail Mary Pass when I have taken all that is allowed. Anger emotionally fuels and informs my pain, once it has started, and so writing, again, is a way to get through that -- a way to bring the circle's ends back in line, and my mind to a measure of quiescence.

Having literally said, and also performed, this real cycle of pain -- allow me to finish. This is usually the secret part.

When last we left our intrepid painkilling thread, we were citing one of the more predictable quotes from Pound, that crazy, dangerous fool. You know, the ant's forefoot, from the last of the Pisan Cantos.

Here is a brief map of Pound's route to Pisa and on to trial and twelve years at St. Elizabeth's:


Pound met the Fascistleader Benito Mussolini, and it was in this man that Pound saw the opportunity for economic and social reform. As a supporter of Fascism, Pound's statements broadcast over radio became infamous, such as his anti-Semitic statements against what he saw was a Jewish control of the economic systems of Europe:

"..if some man had a stroke of genius, and could start a progrom against
Jews... there might be something to say for it."

These World War II broadcasts, made in Rome, were openly Fascist (it was clear that he hated U.S. President Roosevelt and usury banking), so it came as no surprise when EzraPound was arrested in 1945 by U.S. forces on charges of treason - Pound was still a citizen of the United States of America. For twenty-five days, Pound was imprisoned within the 'gorilla cage', an open cage which was situated outdoors, and was moved into a tent at the end of this time for medical reasons. This incarceration at Pisa lasted for six months in total, and during his time here he continued to translate Confucius and work upon his most famous work, the Pisan Cantos, writing it on scraps of papers and typing up his poem in the medical tent, after-hours.

Leaving Pisa to stand trial for treason and broadcasting Fascist propoganda in the United States, Pound arrived, and was examined by a panel of four mental illness experts before the trial began. Their conclusion was as follows:

"He is abnormally grandiose, is expansive andexuberant in manner, exhibiting pressure of speech, discursiveness and distractibility... He is, in other words, insane." - The judgement made by the four examiners.

Following this 1946 judgement that he was "insane and too mentally ill to stand trial" (and consequent acquittal of the charges on thesegrounds), Pound was taken to St. Elizabeth's Hospital in Washington, D.C. where he remained for twelve years until the continual appeals made by his writer friends ensured his 1958 release.

The ten cantos comprising the Pisan Cantos were composed in the weeks immediately following Pound's several week stay in one of the camp's death-row wire cages, where he had been exposed to the elements, and where he was deprived of the comfort of the human voice, as he was considered too dangerous to be engaged in conversation. When it was finally decided that he was not a high risk prisoner, after all, his health -- physical and mental -- was already in decline. They moved him to one of the medical tents, and there he composed LXXIV-LXXXIII (84 was added later, as coda).

Indicted for treason, found incompetent for trial, Pound ended up, as most crossword-puzzlers and American Lit 101 (or some other introductory course on modernism) know, at St. Elizabeth's.

Just a few months back, a very sweet woman -- who turns out to be my aunt -- filled me in on some of the more fascinating tidbits of Our Family History. My great-uncle Otis spent the last third of his life as an inmate at St. E's, the unwitting victim of tertiary syphillis.


See? It's not all coincidence and serendipity. Nor is it self-indulgence. Well, nor is it entirely self-indulgence -- this defeat of pain by DISTRACTION.



And haven't you had a wonderful time?

Friday, April 25, 2014

List of Doctors/Organizations Providing Ketamine Treatments for CRPS / RSD

This list was current as of April 2011, when it was originally published. Please help me update it by leaving a message detailing new clinics, hospitals, and doctors who are providing subanesthetic Ketamine treatments for CRPS / RSD -- also let me know, s'il vous plaît, about any errors in the current listing.  Thank you, Sweet Readers!


Doctors/Institutions Providing (Subanesthetic) Ketamine Treatment for CRPS / RSD
STATE   CITY   DOCTOR   ORGANIZATION   PHONE   WEBSITE/EMAIL

CA Los Angeles Thomas Leverone 310-209-6500 ketaminetherapy@gmail.com
CA Los Angeles Joshua Prager Center for Pain Rehabilitation 310-264-7246 paindoc@ucla.edu
CA Los Angeles Linda Rever USC Pain Center 323-442-6202 rever@usc.edu
CA La Jolla Nancy Sajben Scripps Memorial 858-622-0500 oral Ketamine
CA Santa Anna Lawrence Miller 1450 17th St, STE 200 714-953-6000
CA San Francisco SF Kaiser 415-833-0095
CO Univ. of CO Alan Brewer 720-848-1970
DC Dr. Chin Geo. Washington Hosp. 202-715-4599
FL Hollywood Dr. Kaufmann Joe DiMaggio Children's Hospital 954 360 6383
FL Sarasota Doanld Erb, DO Institute for Advanced Medicine 941-917-5111
FL Tampa Anthony Kirkpatrick 813-435-8206 www.rsdhealthcare.org
GA Atlanta Erik Shaw, D.O. Shepard Pain Institute http://www.shepherd.org
IA Des Moines Steven Quam,DO Metro Anesthesia and Pain Management 515-221-9222
IL Palos Park Renata Variakojis 708-631-5550
IL Chicago Timothy Lubinow Rush Univ. Med Cntr 312-942-6631
IL Rockford Medical Pain Mang. Serv 815-397-8400
KY Louisville Christopher Nelson Bluegrass Pain Cons. 502-423-1021
Kas Leawood Dr. Simon Mid-America Physiatrists 913-599-2440
MA Boston Arnold Pain Center 617-278-8000
MA Boston Christine Peeters-Asdouria Beth Israel 317-278-8000
MS Jackson Kenneth Oswalt University Pain Management 601-984-5950
NC Winston-Salem James North Carolina Pain Institute 336-765-6181
NE Hastings Mark Brosnihan/John Dungan Manny Lanning Mem. Hosp. 402-463-4521
NJ Marlton Philip Getson 856-983-7246
NJ Morristown Edward Zampella Atlantic Neurosurgical Specialists 973-285-7800
NJ Camden Pain Management 856-983-7246
NV Carson City John Di Murro 775-841-4057
NY NYC Vadim Kushnerik Downtown Hospital 212-312-5247
NY Dr. Durkin 631-638-0800
NY NYC Seth Waldman Hosp. for Special Surgery 212-606-1015
NY/DC/VA Nameer R. Haider, MD see website www.killpain.com
NY NYC Ron Hertz Roosevelt Hosp. 212-523-6357
NY Syosset Northshore Hosp. 516-496-6506
NY Stony Brook Brian Durkin, DO Stony Brook Hospital 631-638-0800
OH Mayfield Hgts. Teresa Dews Hillcrest Hosp 440-312-8599
OH Centerville Amol Soin, MD Ohio Pain Clinic 937-434-2226
OK OK City Jack Marshall 405-775-9355
PA Bryn Mawr Matthew Kline Center for Pain 610-527-9500
RI Pawtucket Pradeep Chopra, MD Interventional Pain Mang, Ctr 401-7294985
TX Houston Everton Edmondson Interventional Neurology 713-797-1180
TX San Antonio Kaleb Shaw, MD Univ. of Texas, San Antonio 210-450-9850
UT Salt Lake City Andrew Tallbutt Life Tree Pain Clinic 801-261-4988
WY Casper Tuenis Zondag Neuroscience Center 307-265-7246
WA Yakima Waters Edge Pain Relief Institute 509-574-3805
New Zealand Aukland Greenlane Hospital (09) 638-9909

4/25/2014 addendum:  Please remember that the textual stuff below was painstakingly typed wayyy back in April 2011, hence some oddity.  For instance, Dr. Schwartzman has [alas!] retired...

*I cannot vouch for what you'll discover upon contacting the individual doctors and institutions listed above.  I can verify that this list is NOT complete -- for which we should all be more than a little bit grateful!  I say that because I know of several exclusions from my area -- exclusions that are completely warranted by the less than impressive approach being taken by those excluded!  For instance?  Well... the local doctor whose approach to the ketamine infusion is to LEASE an infusion machine to the patient, toss in an i.v. or PICC line, and send the patient home with bags of ketamine... That's right, you can do your ketamine treatments in the privacy of your own bedroom!  Oh, and the cost is as attractive as the "protocol" -- beyond the insertion of a line and the leasing of a pump -- it's...
FIFTY DOLLARS. 

Personally, by excluding that particular physician from this list, the list maker proved his bona fides!

You'll note some more obvious things, like the absence of Dr. Schwartzman of Philadelphia (Neurology Chair at Drexel). I can think of numerous reasons why that might be so, first and foremost that he has more patients and potential patients than your average bear, and second, that he may wear more the mantle of researcher and academic at this point. Mostly, though, I don't know. He is easy enough to find, as are the details of his protocol.

A word about the Schwartzman protocol: It is a research protocol, and therefore is not subject to any adjustment. The results need to proceed from a process that is double-blind and placebo controlled -- reproducible, ethical, heavily monitored and so on.

Uh-oh.  I feel a sensation of mounting bile.  Perhaps a moderate rant...
I am fed up with the CRPS / RSD patient culture -- online, at least. I should not have strayed from my neurologist's longstanding advice not to join online CRPS/RSD "support" groups. A few weeks ago, I found a group fairly experienced with ketamine, joined, shared my "story" (de rigueur), but mentioned prominently, and twice, that I did not wish to debate ketamine protocols, as I am in the position of using what is available to me. That I am unable to swoop into Philly on a private ambulance plane, "Dr. S" having dropped whatever insignificant thing he was doing to meet and escort me around his facility, does not mean that I am not invested in getting well. That I am no longer pursuing inclusion in the "coma" treatment studies does not mean that my efforts to beat "the monster" are either half-assed or half-hearted. (I am pretty sure, as are others, that it would kill me.)

Yes, despite declaring the ketamine protocol debate off limits -- that's all most people came back at me with... Not to say that there weren't any who attentively read my post and responded thoughtfully and with a clear intent of being... you know, *supportive* -- there were. Two. Two people. One is about as frazzled as I am, and we are enjoying behind the scene banter. It's a case of instant recognition of one's self in the other -- I'm very comfortable with her.

And it occurs to me that I pulled on her exactly that with which I am charging the Protocol Protectorate!  The difference was time and place -- we had at least perfunctorily "met," and we were communicating privately. She wanted to pursue a treatment for whom the only known advocate is a very shady doctor (*cough* *sniff* dr. H *achoo* in Florida *sneeze*), now retired but still in the business via an equally shady website and -- I innocently and unknowingly surmise -- some longstanding system of kickbacks. If folks will do just a bit of due diligence, they'll discover that *cough* *sniff* dr. H *achoo* in Florida *sneeze* did time for Medicare fraud. In a different state, a bit more to the north. Starts with a V.

So I spoke up and posed some rhetorical doubt.

It turned out that, in the interim of our communications, she had stumbled on some less than savory details on her own. She was doing what needed doing and I felt relieved. God only knows how many desperate people have fallen through the cracks, lost to these assholes armed with medical licenses.

But I have been through this process -- constant guarding against people with no aim other than fleecing patients so desperate for relief that they will believe the most amazing crap -- and it is tedious. Mind- and heart- numbing.

What did I expect from the group? What help could they realistically have been?

I wanted to know what, if anything, I could do to optimize the benefits of my treatments. There was only one clear response and it was buried in a bunch of condescending advice for the neophyte, and full of "Dr. S" this, and "Dr. S" that... In order to participate in his studies, Dr. Schwartzman requires that patients be off most meds, and all opiates. That makes sense to me... but mostly, it makes sense in his intensive research protocol.

Crud. Let me chat about something else for a moment. I am not completely sure of this -- I saw a video by Dr. Prager of L.A. from about a year ago in which he said the German arm of the coma studies had been shut down. That makes me sad even though I understand the forces at work.

It has to do with what happened to Laura Beckett, I believe, and while her situation is tragic, I don't see how "blame" can realistically be assigned or why the study had to be punished as a result. MRSA is everywhere, and I have some experience with contracting it, even in an ICU environment where standards are high. It strikes me as odd, as well, that the work in Mexico continues unabated with barely even a mention of the patient death that occurred there.  The implication in Prager's video is that her inclusion was on a compassionate-use basis, not as part of the research cohort.

It's a darned good thing that I recognize the dangers of knowing-a-little-but-not-much. What would be even better? If I could find more medical professionals to trust, with whom to share the burden of worry. I have a group of trusted doctors but none of them are, or will ever be, CRPS experts. When you have an orphan disease that is not at all sexy in its promise for monetary reward, you also have a disease that doesn't/cannot interest many mainstream treating professionals or fire up research consortia (Big Pharma) with burning passion. CRPS just doesn't have that special cachet that comes from infusions, not of ketamine, but of cash.

On the occasions when I pray, it is almost always in the form of intercessionary prayers -- perhaps the prayer of the pompous, definitely the prayer of the dilettante.

Self-interest is never absent, never far from my lips.

I pray for my local, real, available, and wonderful doctors and nurses. But I also pray for Dr. Schwartzman, Dr. Kirkpatrick, Dr. Prager. I pray for Laura Beckett and for the family and friends of Andrea Gianopoulos. They each own, somehow, a little bit of my wayward soul by virtue of their bravery and by the evidence of their faith. 

It's a rough weekend. I hit a pain cycle starting -- roughly -- Wednesday morning. If you noted my previous erudite discussion of the term and concept of "flare," let me say that I seem to be in the midst of shifting pain types, not just some sort of eastern purification of the pain -- *snort*! Some of it may be due to Buddy the Kitten's claws but I don't see that I can blame it all on the Wee One. Ask me again in a few days.

My anxiety levels hit their peak around 4 am last night. All I seem able to think of is how Monday's ketamine treatment is likely to be my last.



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Saturday, March 22, 2014

3 years ago today: Subanesthetic Ketamine Infusion #2

originally published 3/22/2011 -- republished to honor fred


I'm pretty blue, pretty exhausted.  Can't think of a reason why yesterday's treatment should be behind either of those states, but heck... who knows?

They upped the dose to 90 mg and infused it in about 2.5 hours.  It was not pleasant but I apparently did a good job hiding that from Fred.  The nurse somehow knew I wasn't having the time of my life, and gave me a pep talk at discharge about how finding the right dose takes time and then several treatments at that dose, or higher.  Monique, her name was Monique.

Without saying much, she said a lot.  Like how this may be pissing into the wind because I am starting so long after onset.  Nine years.  Nine years.  Nine years of this.

She wouldn't use the port (that's right -- after all we went through to get it in before the second infusion -- the doctor having said he would refuse to treat me if I showed up without one...) because it was so new, the site very... raw.  It's swollen, bruised, and just not healed at the "edges."  I could see Fred eating his outrage before bending to his book.

Instead of sitting by my side, he sat in the wheelchair at the foot of the guerny, so as to stay out of the way of the nurse and tech, who do vital signs frequently -- like every 15 minutes.  He was beautiful to behold, at least in my tripping mind -- standing out against the bleak fluorescence of the hallway, a silhouette I've come to love, a faithfulness I surely do not merit.

I remember crying. My legs spasming, relentless.  The i.v. tubing, the blood pressure cuff, the oxygen monitor --each thing assumed terrible proportions just by tapping against my skin, each tap scathingly painful. I remember thinking that so long as I didn't open my eyes, I'd be fine.  That's probably why Fred thought all was well, thought I was sleeping through it.  Not so.  Not even close.

I asked for my purse there toward the end.  I had wanted to take a clip of the statue in front of the hospital.  Instead, while completely out of my mind on ketamine, I took a video of the ceiling in my cubicle, the curtains surrounding my cubicle, the empty hall near my cubicle, and...

...the most comforting of comforts, perched in the wheelchair there at the end of everything, my sentinel, my guard -- the best argument, the best reason I know for opening the eyes...



Next week, an even higher dose.  Then, the following Monday, an assessment and decisions.



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Saturday, November 3, 2012

Warren Zevon

This is a repost from 2010, republished in honor of @yoclutso, Twitter friend, par excellence, and to reestablish our Stupid People Campaign and DumbFuck Initiative.

The "Why the Warren Zevon Reference" Prize remains unclaimed.
***   ***   ***   ***   ***   ***   ***   ***   ***


Earlier today, I was audacious enough to attempt both an explanation and demonstration of the manner in which my brain works when caught composing.  I confessed to keeping most everything I write, out of fear that the passage just created might prove to contain the pivotal point of a past or future doctoral thesis. 

[Did no one else snicker and search for the hidden camera when told the Tale of the Dissertation?  You know, that composition of a "substantial and original contribution to human knowledge"?]

Anyway, I spent a few minutes wandering among the blog drafts that have piled up on the new slate flooring in the newly refurbished Computer Turret. (You'd never guess there had been weeks of smoldering electical fire!) I had a moment of epiphany about the nature of piles and stacks... deciding that they are much easier to tolerate in rooms that have *corners* into which they can be tucked -- and by which they can be bordered. 

I also developed serious doubts about my non-linear compositional stratagems.  Take the draft that I am reproducing below.  '

It's kind a typical lighthearted essay on Manor Life -- typically circuitous, typically spun by its own peculiar internal logic.  François Premier, war, and woodworking, all neatly dovetailed with stories of my Twitter friend @yoclutso, and her Château Life -- plus the obligatory mention of Captain Haddock and his awesome Miniature Badminton Team.

That's "all good," as they say.

What I want to know is why the damned 10-month old draft is titled "Warren Zevon."  If, after giving this draft the attention it so deserves, you can explain the Warren Zevon reference, you win The Prize!

*****     *****     *****     *****     *****     *****     ***** 

We care passionately about many things here at Marlinspike Hall, deep, deep in the Tête de Hergé (très décédé, d'ailleurs).

When we're not fightin' to maintain our right to freedom of expression against various retractors of liberty, we're tweetin a brand spankin' new utopia with sister collaborator, @yoclutso. We both have the dread CRPS, but more importantly, we've the will and the wherewithall to subvert our nasty realities. We've hit a rough patch these last few months. For instance, I broke my leg by running my power chair into the bedframe. Since she cannot abide comeuppance, @yoclutso decided to fall out of her attic.

That's right, she fell out of her attic.

I called "Foul!" immediately upon hearing this unlikely tale. I mean, knowing how her body feels -- as much as anyone can know such a thing -- then this aerial event begs the question: How the hell did she get into the attic to begin with?

I mean, I've not been able to visit many of the sight-worthy attractions of The Manor, much less haul my ass up the circular marble staircases and through the many spooky hidden doors and sliding, shiny polished-wood panels, covered in the most outrageous marqueterie -- most of which were created and installed by that long-nosed dilettante, François the First. Not many people know that he was a closet woodworker, escaping the demands of constant wit and sex with connected courtisanes by hours spent reconstructing near trompe-l'oeil perfect pictures of peacocks and pheasants, using tortoise shell, copper, and nacre, or mother-of-pearl.

In fact Marlinspike Hall and the surrounding region was home to the world's fifth largest Tortoise Troup until François decimated the poor things. Heartless, heartless. He even brought entire lines of ancient bivalves to an artificial end, that inveterate Marauder of Mollusks! One of the reasons The Captain maintains such pristine conditions in The Moat is because in its murky depths lie many of the archaelogical truths about François and his Marqueterie-driven Holocausts.

It's time that the world learned the truth. It wasn't just his lack of military prowess that caused François to fall captive to Charles V during one of his patented "Let's Take Over Italy" campaigns -- no, the denizens of The Manor turned him in.

That's right. Sold his ass to the Emperor in hopes of regaining the peace and quiet for which we are best known, and to which we believe we are entitled.

François called a siege down onto Marlinspike Hall, and so isolated the region of Tête de Hergé that the mind boggles thinking of how things might have developed had Francis not messed with the installed default settings.

No, I have NOT been tinkering nonstop with a new laptop. Whatever makes you think such a thought?

I will say this, though: Don't push buttons or pick options without having some understanding, at least, of how to unpush and unpick your pissant choices.

In particular, don't fall for the Ease of Access Centre's pesky offerings, in the hope of easing your access 'n all. Losing sight in one eye, and all clarity of vision in the other, is no excuse for mucking up Display Settings. It was as if the sun had exploded and against its incomparable white light, Microsoft was taunting me with wraiths of orange shadow.

Yeah, so.
Ummm.
François Premier, that guy!

With no thought to the Little People (the ancestors of our present day Miniature Badminton Team) caged with him during the passive onslaught, he depleted their stores, knocked up their women, devastated the local economy, and paved the way for Seven Years of Not Much -- a period so difficult that the Locals feel a certain superiority to the mambypamby Troubles of Northern Ireland. Bunch of sissy belly-achers.

It's a little known fact that Captain Haddock hides some stout Irishness in his genes. If you think about it -- indeed, if you just lend an ear -- you can hear the gaelic kiss the rocky soil of his rants. The parentage of the Miniature Badminton Team is suspect, too. Just yesterday, the taller of the two diminutive team captains -- twins! -- texted me from @yoclutso's castle:

You've got to do your own growing, no matter how tall your grandfather was.

And Fred swears he heard this twin's shorter brother mutter a famous Irish curse in the general direction of The Referee Dwarf after a controversial call during a midnight intramural bout. Something about an itch and no nails.

Who knows if Tête de Hergé would have been in any way remarkable without the stodgy effect of isolation brought down upon it by that dilletante of a monarch -- maybe François did us all a favor by allowing the region to develop, separate, marinating in its own juices, building a complex flavor, un statut en soi, un passé et une histoire à part entière.

François 1er was constantly dicking around with Charles V and the Italians in the early years of his reign. In fact, he was on his way to recapture Italy (not his brightest idea) when he decided to pull guard and force this little region out of time into the lengthy blockade that either cemented or disrupted the development of its character. It was a war of attrition [mostly because The Manor's bricole -- a man-powered, medieval stone-throwing machine -- was down for repairs].

Taken prisoner at long last, Francis enjoyed his stay in the booted peninsula, from which he stole the best of the Renaissance -- the babes, the art, all the fine stuff. Even the artists themselves. Even the historiography of the artists themselves (the claims that Leonardo da vinci died here are as numerous throughout Europe as Washington slept here is throughout the American New England).

It is said that François' mother, Louise of Savoie, nursed him on the legends of Arthur and the Knights of the Round Table. [I assume I was going to flesh out this startling claim... but from the distance of many months, I've no idea what I am trying to establish...]

Like I said in the beginning, @yoclutso and I have some limitations due to disability, which is why I was amazed that she was in a position to fall out of her attic in the first place.  Not being able to go where I would like to go, and where I am actually sometimes even needed, I have developed an intense attention to the details of where I am forced to be.

Why, until The Captain's Nephew gifted me with a Cruelly Yellow Hummer Power Chair, Limited Expedition Force Edition, I had never seen the Bodacious Back Forty where we do most of our experimental animal husbandry!

Oops, I probably shouldn't mention that.

Anyway {whistling::dixie} -- @yoclutso and I have launched two interstellar (also neighborhood, regional, and national) movements: The StupidPeople Campaign and The DumbFuck Initiative.

Yes, there is considerable overlap.

Thursday, April 12, 2012

A Year Ago: Bed 5, Round 4

first published on 4/12/2011

I had my first opportunity to serve as Ambassador of Ketamine yesterday, a duty that I discharged with vigor, if not honesty.

About a half hour before being escorted to the treatment area, ketamine patients are instructed to stop by the outpatient pharmacy, sidle nonchalantly on up to the counter and hit the pharmacist up for 10 mg of Valium.

I think nonchalant sidling is akin to the skedaddle of the detritus loving Fiddler Crab.

You ask for your Valium out of the side of your mouth;  You cover your purchase with a bag of sour Skittles and maybe some Milk Duds;  You pay your dollar, pop your pill, and go wait to be called for treatment.

So I'm in line, humming, fondling the candy.  There is a guy in a wheelchair taking up a lot of time -- like, they tell him it will be a few minutes before his medication is ready, and he says okay, I'll just wait *here*... but, like, I can't get to the counter because he is entrenched, waiting *there*... 

Jeez, people in wheelchairs think they own the world.

Fred does his clear-the-throat routine.  That doesn't work because, heck, we're in the middle of a hospital where half the population has tubes running down their throats and the sound of raspy retching is the sound of normal.

I finally just call out over the guy's shoulder -- "Yo!  I'm here to get my one-buckValium and to pay for these Skittles and maybe some Milk Duds before I go fall in my K-hole, yo, y'all."

At which point the guy in front of me practically does a wheelie.

"You, too, huh?  This is my first time.  I'm really nervous.  Does it really work?  What are you getting it for?"

Aw, fudge.

I'm nervous, myself, and this is my fourth treatment.  And I am not feeling chatty, or excited, or even vaguely benevolent.

Nonetheless, I proceed to be a fine ambassador of subanesthetic ketamine infusion therapy for intractable pain.  My routine is peppered (and salted) with plenty of "it varies from patient to patient..."

"Is it working for you?  How long does it take before it works?  Is it scary?" And so on, and so forth.  I meet his Blessed Mother, who has blue helmet hair and clearly thinks I might be one of them "drug atticks."  He rolls up his pants to show me his red lobster legs, trying to convince me that his pain is horrible, that he cannot sleep, that he's tried everything.  I tell him he is obviously a cry baby, signal the money-grubbing pharmacist tech, peel off wide, and catch my neatly packaged diazepam on the fly.  Fred tucks the candy into his backpack, I leave an IOU tucked in the Bowel Program For High Quadriplegia aisle (next to the cards and magazine rack), promise to settle accounts "next time," and we leave that big old cry baby and his helmet-headed mama with mouths hanging open, sucking in our dust.

When I am assigned an area back in the treatment room -- Bed 5 -- guess who is put in Bed 4?  You guessed it!  And his mama, too.

Big fat paralyzed cry baby seems to know every doctor and nurse who strolls by... and for some reason, people seemed to be taking their lunch-break power promenades down Ketamine Alley, peeking in at us weirdos and our wheelchairs, canes, catheters, ports, and world-weary loved ones valiantly trying to stay awake as lights and sounds dim, then mute. Fred and I listen to my neighbor bitch and moan as a namby pamby, softspoken, I-think-I-can-help-you type doctor attempts to tweek his spinal cord stimulator so that the cry baby can sleep long enough to have a wet dream. The doctor leaves him with several programs to try and some inspirational thoughts by Jack Handey.

I am the last person to be hooked up, even though I have the largest dose to be given.  As usual, when I start the infusion, ketamine greets me with one of its more dependable effects -- a kind of sepia treatment, a brownish, sometimes greenish, tint or wash that rubs out details and crosses soft edges.  That, and hearing so acute that I perceive Fred thinking of ducking out to grab a sandwich -- and his loud, booming hope for a kosher dill on the side.

Big fat paralyzed red-legged mama's boy cry baby, like many of us, has brought music to listen to in the form of an MP3 player.  In fact, I had spent a fair amount of time during the night making a playlist specifically for the Ketamine Experience, hoping to avoid Jimi Hendrix and the Banner, "Knockin' On Heaven's Door" and stuff like the giggle-inspiring "Illegal Smile."  Me and my 54 songs were ready for Round 4, all negativity purged, insipid pop privileged over mind-bending instrumentals, rock classics, and Mozart.

But now, in the cozy environs of Bed 5, there was this competing roar that I couldn't at first locate and never managed to silence.  That's right -- the cry baby's music (if it can be called that! sniff:sniff) vibrated all over the damned place, bleeding from his earbuds.  His taste in songs seemed to be limited to groups formed by cousins.

I apparently don't rise above a whisper during ketamine infusions.  Fred has to lean in close to hear me and says that I perpetually inquire as to whether or not I am being too loud, and seek reassurances that I am not, in fact, shouting. 

So there was that to contend with -- supersensitive hearing and leaky earbuds.

And yes, once again, I became hyperconcerned about a little old lady who was stashed in the last bed on Ketamine Row.  She was moaning so, and weeping.  Would these people never shut the hell up?

Part of the reason I was late getting started was that they accessed my portacath for the first time. Thankfully, that went fine, despite the nurse's contention that it was still too "infected" to use.  The problem is now relegated to one tiny area of the incision, through which pokes this recalcitrant little stitch that refuses to "dissolve" and be absorbed by my body.  Every few days or so, I clip the ends, and to keep things free of pus, crusty critters, and squishy maggots, first thing every morning and last thing at night, I douse the area with cognac and smear bacon grease over the wound, concentrating on that problematic corner.

Sorry.  That's what I felt like telling the nurse every time she inquired whether or not I was applying neomycin, keeping it clean and covered, etcetera.  It seemed she asked a hundred times and that was before the pharmacy even delivered the right dose of ketamine -- they had prepared a bag of 50 mg when I had graduated to 125, and the time required to correct the error was sufficient for her to worry enough about my site to page the doctor for "clearance" to use the port.

Clearly peeved at having been pulled from his clinic patients, he glared at me (not her, mind you, but me), poked at it meaningfully with an ungloved index finger, and declared it "perfect."  Before dashing back to the crowded exam rooms and stacks of charts, he gave me a short pep talk, even using the word "miraculous" to describe the relief that would be coming my way any day now.  Fred had a sneezing fit in the middle of the doctor's testimony, and I thought I saw the word bullshit fly out of his delicate aquiline nose and dance in the air before diving into his fine linen handkerchief.

If you are dying to know whether I got any pain relief from Round 4 of subanesthetic ketamine, you're not alone.  So am I.

At 4:10 pm, I had no pain in my feet, no pain below my knees.  I laughed, I smiled.  I announced it.  And then it was gone.  No one reacted to my news, so I am not sure whether I actually said it out loud.  Even when I retold the tale on the ride home, Fred didn't think I was serious.

When people describe how heartbreaking it is to have pain relieved only to have it return?  There is no melodrama there.  It really does tear the heart asunder -- bundles of ischemic cardiac muscle fall apart, shred, and twitch in extremis.

To answer the question, then, I don't know.  I might have dreamed it, I might have hallucinated it, but at 4:10 pm, I had no pain in my feet, no pain below my knees.

All I can conclude is that maybe we are nearing the right dose of ketamine... I heard the nurse and the doctor discussing something about adjusting the rate but not the dose, but I am not sure they were talking about me.

 The big fat paralyzed red-legged mama's boy cry baby next to me?  When they inquired about his pain level following the infusion, he crowed -- "Zero!  Zero, man, zero!"

His little blue-haired mama looked confused, but pleased, and announced that they were gonna go get them some Taco Bell.

My next treatment is set for next Wednesday at which time the dose will be 150 mg.




"cocorosie K-hole {independent} music video" uploaded to YouTube by ensnyggflicka on Dec 4, 2006




Tiny spirit in a k-hole
Bloated like soggy cereal
God will come and wash away
Our tattoos and all the cocaine
And all of the aborted babies
Will turn into little bambies

Wounded river push along
Searching for that desert song
And mozart's requiem will play
On tiny spearkers made of clay
Tell my mother that i love her
Martin luther you're an angel

Charming monkey saunter swagger
Drunken donkey limbs disjointed
Your chest is a petting zoo
Mexican pony fucked up shoes
I dreamt one thousand basketball courts
Nothing holier than sports

Dragonfly kiss your tail
Precious robot built so frail
Universe of milk and ember
Your hot kiss in mid december
What's god name i can't remember
Trough the crack eye lovely weather

Thursday, October 13, 2011

Going up, again.

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

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


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

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


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


Chuckle.

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

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

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

Weary giggle.

Weary sniff.

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

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

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

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

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

Are you sure?

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

Mwa ha ha!

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

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

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

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

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

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

Courtesy of The Joint Commission:

A sentinel event is an unexpected occurrence involving death or serious physical or psychological injury, or the risk thereof.  Serious injury specifically includes loss of limb or function.  The phrase, "or the risk thereof" includes any process variation for which a recurrence would carry a significant chance of a serious adverse outcome.  Such events are called "sentinel" because they signal the need for immediate investigation and response.
Sween yelled that there was no way I had suffered an adrenal crisis due to a failure to premedicate (also intra- and post- medicate, but I don't want to seem picky).  It just wasn't possible and anyone who thought so did not know what they were talking about.  And, certainly, the person ill-mannered enough to actually go into complete adrenal failure was a person to be dismissed and ignored.  As soon as the nitwit navigates his way out of cardiac and kidney failure, squeezes by the dangers of that hospital-acquired infection, 'n his heart rate sees the underside of 160, that is...

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

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

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

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

Almost, but not quite.

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

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

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

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

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

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

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

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

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

Shiver. More shivers.

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

I cannot answer their polite queries, of course.

I have no voice.

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

Yes, well.

Not even my dreams are subtle.

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

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


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


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

Friday, September 23, 2011

My apologies

Dear Readers, Friends, and Odd Family Members --

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

So I shall keep it brief.

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

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

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

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

Sunday, September 4, 2011

From the Journal of Pain



Lone Knudsen , Philip M. Finch , Peter D. Drummond
Murdoch University, Perth Pain Management Centre, Perth, Western Australia

The Journal of Pain
Volume 12, Issue 9 , Pages 985-990, September 2011

ABSTRACT:
Hyperalgesia often extends from the affected limb to the ipsilateral forehead in patients with complex regional pain syndrome (CRPS). To investigate whether this is more common in CRPS than other chronic pain conditions, pressure-pain thresholds and sharpness to a firm bristle were assessed on each side of the forehead, at the pain site, and at an equivalent site on the contralateral side in 32 patients with chronic pain other than CRPS (neuropathic or nociceptive limb pain, radicular pain with referral to a lower limb or postherpetic neuralgia), and in 34 patients with CRPS. Ipsilateral forehead hyperalgesia to pressure pain was detected in 59% of CRPS patients compared with only 13% of patients with other forms of chronic pain. Immersion of the CRPS-affected limb in painfully cold water increased forehead sensitivity to pressure, especially ipsilaterally, whereas painful stimulation of the healthy limb reduced forehead sensitivity to pressure pain (albeit less efficiently than in healthy controls). In addition, auditory discomfort and increases in pain in the CRPS-affected limb were greater after acoustic startle to the ear on the affected than unaffected side. These findings indicate that generalized and hemilateral pain control mechanisms are disrupted in CRPS, and that multisensory integrative processes may be compromised.

PERSPECTIVE:  The findings suggest that hemilateral hyperalgesia is specific to CRPS, which could be diagnostically important. Disruptions in pain-control mechanisms were associated with the development of hyperalgesia at sites remote from the CRPS limb. Addressing these mechanisms could potentially deter widespread hyperalgesia in CRPS.

REFERENCES



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Earlier this year, in the fourth issue of Volume 12, Knudson and Drummond published this prefatory study investigating hemilateral mechanisms in pain modulation:

Cutaneous limb inflammation produces analgesia to pressure pain in the ipsilateral forehead of healthy volunteers
Knudsen L, Drummond PD.
School of Psychology, Murdoch University, Perth, Western Australia. Lone.Knudsen1@post.au.dk

Abstract
To investigate the pain-modulatory effects of a local inflammatory stimulus on pain elsewhere in the body, capsaicin was applied topically to the forearm of 14 healthy female volunteers. Pressure-pain thresholds and sensitivity to sharpness were assessed on each side of the forehead twice per day during 48 hours of capsaicin treatment, and in the treated and contralateral forearm before and at the end of treatment. Heat was applied to the treated area to rekindle pain at times of forehead assessment. Hyperalgesia to sharpness, but not pressure pain, developed in the treated area whereas sensations remained stable in the contralateral forearm. Sharpness ratings decreased bilaterally in the forehead after 6 hours of treatment, and ipsilateral analgesia to pressure pain developed in the forehead when the capsaicin site was heated after 48 hours of treatment. These findings suggest that pain modulation involves unilateral regulatory mechanisms in addition to local and generalized pain control. The dissociated changes to sharpness and pressure pain indicate distinct cutaneous and deep central pain pathways. PERSPECTIVE: The findings lend support to an increasing body of research which demonstrates that pain modulation involves hemilateral mechanisms in addition to local and generalized controls. Elucidation of mechanisms that modulate ipsilateral pain processing may help to clarify the pathophysiology of complex regional pain syndrome, which is characterized by hemilateral hyperalgesia.
Click HERE for References.

Sunday, June 5, 2011

REPOST: El beso de la mujer arana

REPOST WARNING!
[maybe that should read "gush of sentiment" warning.]

hi, folks!  it's sunday morning... wait!  no, it is now sunday afternoon, and nadal is closing in on federer, hooray!  i can only hope that people understand clay-court genius... the french do, of course.  they totally get how it can make even an all-time great look awkward and late-swinging...

yes, looking stupid is the gift to any challenger of a truly great clay court specialist... and that's a more accurate description of what the french "totally get."  even if voltaire felt he had to reside in switzerland in order to survive his own shenanigans...

my tired and weird commentary?  it's not just a visual effect of methadone withdrawal that brought me to the point of reposting this blog entry of april 2009.  [if you're not a regular of this blog, i am in my 42nd hour of the GreatJumpOff...].

nope... i have a referring reference, a citing cite!  late yesterday afternoon, when i thought i'd experienced the worst of the worst of withdrawal (oh my god, it's five-all third set... rafa?  helllllooooo, rafffffaaaaaa?  it's love-40 on nadal's serve.  choke city, it's choke city.  okay, okay, now it's 15-40.  like that's any comfort.... because federer is now gonna serve a break up at 6-5... crap.  he's wily, that federer.  does anyone else think he has bulked up a bit?  no, i am NOT starting an unfounded steroid accusation.  ohmygod what a beautiful drop shot by rafa!)  ummmmm, right.  ummmmm, well, god damn it all, as we go into a FOURTH SET, as the elder mcinroe announces that nadal "has become predictable," i have developed a new withdrawal symptom:  fever???  who knew that withdrawal would provoke fever above 101?  (if you're not a regular of this blog, i am in my third year of experiencing daily fevers, though they are characterized as generally being BELOW 101...)

shoot, who knows?  maybe federer is behind this latest spike?

i wouldn't put it past him.  he's thinking:  "drat!  that inveterate (better than invertebrate!) blogger at elle est belle la seine la seine elle est belle is badmouthing me once again.  i must raise my level of play against this clay-court specialist!"

but... i will not be deterred from my story.  yesterday, yesterday afternoon, i watched Presumed Innocent.  no, not because of harrison ford, you numbnut, you!

BECAUSE OF RAUL JULIA.

Raúl Rafael Juliá y Arcelay (March 9, 1940 – October 24, 1994).  it still grieves me greatly to read "Raul Julia WAS an actor..." -- and not just because he was much more than a mere actor...
Humanitarian work


During his life, Juliá continued the work that was done by his parents during his childhood, cooperating with social and educational activities. Due to this, he was named to the New York Council for the Humanities. Among the targets of Juliá's charity work were initiatives directed towards youth. Concerned with rising levels of violence among teenagers, he sponsored script writing in high school students and supported young actions. In order to promote other Latin American performers, Juliá was an active member of the Hispanic Organization of Latin Actors (HOLA) and co-founded Visiones Luminosas, an initiative to promote screenwriters. He continued to work in the NYSF, but performed without receiving a salary. In a similar fashion, Juliá cooperated with independent filmmakers in Puerto Rico by acting in their productions for free or receiving a low salary. This constant involvement with the Latin American community earned him a posthumous Hispanic Heritage Award. Juliá also promoted interracial integration, being a member of Racial Harmony and serving as the chairman of the Joseph Papp Celebrity Coalition for Racial Harmony.


As part of his work in The Hunger Project, Juliá donated food to a food bank once every month. He also promoted the program on television and radio and served as narrator in bilingual videos. Juliá opened slots in his schedule to participate in multiple benefit galas on behalf of the organization. Due to this work, the project gave him their Global Citizen Award. His involvement was also recognized in "Ending Hunger: An Idea Whose time Has Come". On March 24, 1992, Juliá received the Courage of Conscience Award. In 1994, the government of El Salvador recognized his activism for human rights, granting him the role of overseer in their general elections in representation of Freedom House. During his visit to the country, he visited the tomb of Romero, subsequently describing his experience in a piece published in Freedom Review.


In recognition, the National Endowment for the Hispanic Arts offers the Raúl Juliá Award for Excellence annually. In 2002, actress Sandra Bullock was presented with the award. She received it for her work as the executive producer of The George Lopez Show, which offered work and exposition for Hispanic talent. In 2003, Daniel Rodríguez won the first Raúl Juliá Global Citizen Award from the Puerto Rico Family Institute based in New York, receiving the recognition due to charity work.


Honors
The Raul Julia Micro Society, a charter school located inside Public School 3 was named in honor of Julia. The school is located in the Tremont neighborhood in the New York City borough of the Bronx.
The actor's training unit of the Puerto Rican Traveling Theatre was renamed the Raul Julia Training Unit.
The National Hispanic Foundation for the Arts (NHFA) honors outstanding entertainment personalities annually with their Raúl Juliá Award for Excellence. The award which recognizes individuals who have contributed to the growth and awareness of Latinos in the arts and media is awarded annually to many Hispanic and non-Hispanic personalities. Past winners include Cristina Saralegui (2010) and Sandra Bullock (2002).
In 2000, the Hispanic Organization of Latin Actors (HOLA) renamed its Founders Award to the Raúl Juliá HOLA Founders Award.


that's right! proving once again that i am stronger than my addictions, yesterday afternoon, while watching
yesterday afternoon, i fell head over heels in love again... with raúl.  and i remembered, despite the incessant jerking of my legs, despite the nausea and other gastrointestinal difficulties, the yawns, the sweats -- i remembered that i had, once before, written a blog post about raúl juliá.

and without further ado (ha ha!) -- here it is (and CONGRATULATIONS, RAFA!!!!!!)[OKAY, so it is not all about raúl... so it is mostly about me and fred... what? did you think i was actually going to rise above incessant it's-all-about-me-itis?

********************************************************************************

It is happening too soon, this descent into pre-surgery panic. You would think that with each experience, each *survival*, I would build confidence instead of abject terror.

You'd be wrong.

I know that characterizing the result as "survival" is taking a grim view of things. It's just that none of these operations have provided the doctors (hence, me) with answers to the normal burning questions of life: Why can't we identify the organism that has produced all of this infection and explosive pus within my skeleton? Why does the Infectious Disease specialist say that there are "no antibiotics left to try"? Why is there air? Who keeps beating me to within an inch of my life every time I manage to doze off? Where did Fred put the cheesecake? How do we stop the spread of CRPS/RSD with each freaking surgery? Really, I am not kidding: Where did Fred stash the damn cheesecake? Never mind that the infection has apparently caused me to have blood sugars in the 300+ range... It's a zero-carb cheesecake. I swear.

Okay, I will opt for radiant (and subsidizable) health, and choose a better poison: sugar free, artificially-flavored, highly concentrated, orange Jello. I just happened to whip some up in a Julia-Childlike moment around dawn. To splurge? Top with about a quarter cup of lowfat plain yogurt, and serve with large slice of cheesecake.

I am sitting here, all alone within Marlinspike Hall, with a creepy Mudd mask on my face and, therefore, little bits of Mudd everywhere. My shirt collar looks like a bad attempt at papier-mâché. This stuff should have been washed away about an hour ago, but I've been "stuck" -- about as dry and flaky as the crapola on my visage. Remember the subtly dropped reference to "abject terror"? Yeah, that.

Prior to one of the last surgeries, I wrote this:

How in heck am I going to be able to care for myself, much less keep The Manor neat as a pin? The Old Masters dusted and straight (not to mention the occasional Rubens or Velasquez restoration project on long weekends)? All the antique Blue Jasper Wedgwood plaques free of nasty cat fuzz? The lawns -- replete with a scale replica of Wimbledon courts 1-19 plus Centre Court, sans that awful poof of a retractable roof that's going up for next year -- deeply green and trim? Oh, and how in the world can I keep the black algae out of the moat without a daily brushing and correction of chlorine requirements? I mean, I doubt that I'll be able to sport SCUBA gear anytime soon.


The answer to everything, unfortunately, appears to be that poor Fred will do all that needs doing. I am consumed by guilt, all the while wishing I could consume his cheesecake.

I have been able to achieve total self-care since the last surgery. He hasn't had to help me with anything -- oh, that is not true! I forgot about the laundry. I can load the dirties into the washer and get that going, but my arms, hands, and shoulders aren't strong enough to lift the wet clothes and transfer them to the dryer. So he does that for me. Sometimes I cannot manage the finer movements needed for folding, too, so I have had to try to assume a nonchalant air while he folds and puts up laundry.

I can bathe myself and manage all the fascinating chores of hygiene. My chores are probably more complicated than your clean-up routine -- There is, for instance, some difficulty when your arms won't go exactly where you need them to be... when you involve that nasty red Hibiclens... when you cannot reach the hair on your head! I've found ways to get it all done and usually come out presentable -- but never remotely like the way I *can* look.

He says that I should ask him for more help. No. I don't want him washing me, dressing me, helping with hair, make-up. That would be my suicidal low.

He does all the shopping and errands: groceries, banking, and all the other stuff. He drives me to all appointments, and in what can only be described as insane traffic. Tête-de-Hergé-ens are notoriously bad drivers. About half grew up driving on the left side of the road, the other half on the right. It keeps things interesting.

Today, Fred has snared La Bonne et Belle Bianca Castafiore and they've tramped off through the African savanna area of The Manor's grounds to deal with the Wimbledon-esque courts. He didn't exactly explain it to her, but he needs her natural, umm... girth -- to help drive the rollers that tamp down the grass courts.

I hope that the method behind his madness is to indoctrinate her to life as a responsible Manor-Mate. She needs to pitch in more often. She could stay busy just
with our new effort to replace all that crumbling medieval chinking between the stones and wood beams with space age latex-based polymer chinking -- the kind that people use on log homes. We embarked on this without exactly having the Captain's permission. I think the hope is that he won't really notice (though the fact that we won't be consuming so much dried peat and wood might tip him off). Living "green" is really nice, but living warm is even better. And the stuff comes in a variety of colors.

Okay... now my face has contracted into a weird leer. Gotta JUMP in the shower and scrape it off. Wash the head of curly and somewhat oily hair. Sit humbly on my shower chair, figuring how to get clothes on without breaking a bone.

I haven't showered in about a week. That does not mean that I am not clean -- I am -- I just haven't been able to stand long enough to get in the tub. More honestly, I have been scared, as I've managed to pass out a few times in recent weeks.

Yadda.


I'll leave you with this: Occasionally, and oddly enough, mostly at times when The Fredster and La Bonne et Belle Bianca are absent, I daydream and miss, viscerally, Raúl Juliá.

Doesn't everyone?