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

$1.98

Bianca Castafiore is keeping her heft at a fair distance from me, a fair distance being enough of a head start to make it to her appartements in red stilettos, and without losing her Philip Treacy sculptural hat. La Bonne et Belle Bianca, always over-the-top in her ways, has attained that rarefied place known as Wretched Excess. Arrogant Opulence. Human Iconography.  She's the Imelda Marcos of Tête de Hergé -- at least in the millinery arts. The Parable of Mrs. Marcos and her 5,400 shoes is not one of my occasionally flighty references. Our Milanese Nightingale risks becoming the cartoonish  punch line of a joke.  Not that the Marcos' various rapes of the Filipino people had any humor in it...

A hat from Ms. Pearl's collection
An award-winning photo byArtist: Jan Siemucha

Anyway, back to the structured fabrics 'n stuff on Bianca's head.  Perhaps you can appreciate the feathers and flowers, the toxic shades best reserved for traffic signage, and the endless allusions to Seuss, but most of The Manor Denizens (and Mavens, don't forget the Mavens) are simply puzzled by all that fashionable electricity.  The cost of each piece is not demurely left to quiet speculation, as The Castafiore pulls a Minnie Pearl, attaching a legible price tag to her various brims. 

[Would that our friend had the insight of "the belle of Grinder's Switch":

Minnie once said that "The price tag on my hat seems to be symbolic of all human frailty. There's old Minnie standing on stage in her best dress, telling everybody how proud she is to be there, and she's forgotten to take the $1.98 price tag off her hat."]

But why does The Diva flee from me, however stylishly she does it?

The look in my eye?  My capacity for violence?  My jealousy of the artwork perched upon her head, the shoes on her feet?  No.

Well, maybe the shoes.  I loved shoes, back in the time when I could wear shoes.

Mostly, she is running because I add nothing to Marlinspike Hall's ambiance these days but screams.  I did not know myself capable of such screaming.  It is not intentional.  It is a product of pain.  And no one wants to be trapped with me inside despair.  Running to the privacy of her now-medieval, now-renaissance styled suite of rooms is the most logical of Castafiorean reactions, even if the shoes and hat slow her down.

I have been off of opiates since June 3.  Others have questioned the purpose of that and from the vantage point of *now*, clearly I lost my mind.  The 9.5 out of 10 pain that I am experiencing is not the dregs of withdrawal, as I've tried to fool myself into thinking.  This is the amount of pain I am in without the assistance of opiate medication.  I will not even try to describe it.  That I've done little beyond scream over the past week will have to satisfy your curiosity.  Years ago, when introduced to the stupid pain score of one-to-ten, "ten being the worst pain you've ever had," I decided to never give "ten" as a response, knowing that more pain was at least a possibility. 

Short of being dissected alive, I cannot imagine hurting more than this.

I saw my Go-To-Guy MDVIP doctor on the Friday before the first of this Ketamine infusion series -- designed to approximate the Schwartzman protocol -- and he surprised me by supporting the use of Prialt, "if this doesn't work out." I was adamant about not even entertaining the notion until the Ketamine treatment clearly failed to relieve my pain in a meaningful way. 

The last three infusions begin tomorrow and end Thursday. 

Yes, I am even screaming in the infusion center, vaguely aware that people keep coming to my bedside, trying to help, whispering questions I cannot decipher, just as I cannot figure their faces.

The seizure activity in my legs is now accompanied by spasms in my arms.  It's cruel and unusual punishment that I'd been comfortable attributing to opiate withdrawal, but now know as my latest CRPS symptom.  It's not going away.

My kidney function took a hit from all the ibuprofen I've been living on but will surely correct itself. 

Last Thursday, there were only two of us patients awaiting the miracle of Ketamine.  It was kind of eerie.  The other patient was right next to me.  I never saw her face but we all witnessed the terror of her dementia, which centered on the notion that her sister planned to leave her there and go home without her.  Her sister was kind and patient... until she began using me to manipulate her sibling's behavior.  "Shhh, now, sister.  You are disturbing the nice lady next to you... She needs quiet..."

Which was, of course, my cue to start screaming the inchoate mess of my own terrors. 

The night after the first infusion of this series, done at a much higher dose than I'd ever had, was pure Hell.  I hadn't slept in a long, long time.  Fred was in bed, and I wanted to do something -- no idea now what that was -- and ended up in a nightmare of ramming my wheelchair into walls at full speed, seriously injuring the toes on my right foot, and smashing the heck out of my knees.  I was having black-outs.  To jerk back into consciousness was to see the wall, the door, the ramps, all flying at me and having no time to brace for impact. 

So you see why my friends and family flee when they see or hear me coming?

I know it's hard for you to believe but I generally undersell the extent of my pain. In just a few months time, though, it's become the center of my life.  I watch Bianca teeter-totter on her amazing heels, running with one hand clamped on her behatted head, crowing with operatic glee when she reaches her sanctuary.  Fred finds numerous errands to run -- even in the middle of my treatments, he has begun driving around the area of the hospital, showing up again in time for the dregs of Ketamine to run in. 

I cannot see surviving this.  I cannot see allowing an implant for Prialt.  I cannot see farther than this coming Thursday, when I will be able to say that I TRIED. 

an email to diana and carol

I don't have the energy to rewrite what is going on in my head, so here is the text of an email I just sent off to two friends very familiar with my "issues":


Sometimes, when I get desperate, my luck changes...

Monday’s treatment was horrible. I started crying before they even started the i.v. – it just felt so futile. All I could think of was how this was my last chance for pain relief. I felt very bad because when I came out of it, I learned that the nurses were really upset by me being upset. But I couldn’t help it.

Okay, now... follow this story closely!

Last week sometime, out of desperation, I emailed Dr. Robert Schwartzman, the chairman of the Neurology Dept at Drexel University, and probably the most knowledgeable person on the planet about CRPS. I wrote him years ago and really didn’t expect an answer. I wanted advice on "how to maximize the benefits of my subanesthetic ketamine infusions."

When I got home Monday, there was an email waiting from him. It was very TO THE POINT:

Dear XXXXXX,


You have not had enough ketamine. You need ten consecutive treatments of two hundred milligrams per day with midazolam and clonidine. If this is ineffective, you need five days in the hospital with much larger subanesthetic doses of 40 milligrams per hour for five days. You would also need midazolam and clonidine with this dose.


This usually shows marked improvement. We will start some new work on stem cells and there are other treatments in the pipeline. If you can get up here and I will be happy to see you.


Best regards,


RJS

Just when I had no hope...

But I am getting ZERO support for doing anything more. Fred actually said, “How do you know he’s not just another quack?” I have talked about Schwartzman for YEARS! My go-to-guy actually had the nerve to write that I had already given it “the old college try.” I wanted to slap him.

I knew that Schwartzman has a huge waiting list, and yep, it would take two years just to see him.

Then into my head popped the “MCE” [Medical Centers of Excellence] program that is run by go-to-guy’s MDVIP organization – it is a system of referrals with top notch medical centers... It occurred to me that most cases of CRPS arise from orthopedic problems, injuries, and surgeries. One of the referral hospitals that MDVIP uses is the Hospital for Special Surgery in NYC – probably the number 1 orthopedic hospital in the country. So I went to their web site (it was 4 am...) and FOUND THAT THEIR ANESTHESIA/PAIN DEPT IS DOING INPATIENT KETAMINE TREATMENTS!

I also found something on their website that sounds exactly like what is going on with my shoulders:

 

(CRMO): Chronic recurrent multifocal osteomyelitis: “Chronic: because it does not go away for a long time. Recurrent: because it comes back. It cycles between active and dormant, symptoms and no symptoms, exacerbation and remission. Multifocal: because it can erupt in different sites, primarily bones. Each outbreak can be in a different part of the body. Osteomyelitis: because it is very similar to that disease but appears to be without any infection.” Wikipedia



DOESN’T THAT SOUND LIKE ME?????? That would totally explain why nothing grows in the lab!!!!!!

I need all my mental reserves right now – Fred is fed up. Dr. S (my go-to-guy) is fed up. But they can just get over it. I wrote Dr. S that we could start the process of getting me to the HSS in NYC when I see him in June. I want it done right this time. Last time, I was all set to go to Hopkins and ended up at the Medical College of Georgia with a man who did a consult in under 10 minutes (including review of the chart and x-rays).

Whew. Please don’t you two get fed up with me, either.

I so need to get some sleep.

Am I going crazy? Does the stuff I wrote seem reasonable to you? Does continuing the ketamine even make sense?

love, love, love

XXXXXX


"Love is patient, love is kind. It does not envy, it does not boast, it is not proud."
(1 Cor. 13:4)

the smallest show on earth

This is my second week without Diet Cola.  My caffeine intake is now limited to two large mugs of coffee. Coffee is necessary for the maintenance of meaningful life.

Some days, I am even restricting myself to a single mug of the stuff.

This is only remarkable if you consider that the two-mug limit was a step down from my normal thermos of goodness. 

Fred and I drink different coffees, made at highly divergent strengths.  Then, too, I stop pretending to sleep around 4:30 am.  and Fred comes to bed anytime between 2 and 5 am.  As neither one of us can tolerate old or reheated coffee, it no longer makes sense to brew for one another.  I still do when he has to be rousted from our warm bed in order to drive me somewhere.  It just feels nice and couple-icious to call out "Would you like some coffee?" and to know just exactly how he takes it, right down to the correct teaspoon to use when measuring out his sugar (a spoon from two patterns ago).

More Spoon Weirdness:  This same spoon is one I use when eating yogurt.  For some reason, possibly its cheap formulation, the yogurt coats its back really nicely, enabling a prolonged and delicious lick...

Yeah, so... I switched to having the occasional Diet Root Beer -- a little over-the-top in Cloying Factor but cold and wet.  Without caffeine.

For years, I bought into the myth that caffeine would boost the impact of my pain medication.  What a crock.  Well, not entirely.  As a vasoconstrictor, it is very useful against the evil headache -- usually about 60 mg of caffeine in combination with acetaminophen, aspirin, etc.  In theory, caffeine blocks adenosine, enabling a greater hit of dopamine (and jingle-jangling epinephrine).  Whatever... for me, absent a headache, caffeine does not seem to help the performance of pain relievers.

Has my sleep improved?  One aspect of it, yes!  I am able now to catch up to 2-3 hours of snoozing in the early part of the day.  In other words, I can get up, take some pain medication, work for an hour or so, and then go back to bed and catch some Zzzzees.  Sad to say, the absence of Uncle Kitty Big Balls and Sam-I-Am is also a big part of this new opportunity, as they each were powerful advocates of humans not sleeping but instead tending to the state of their food bowls.  Sammy employed the Bounce Technique and was heartless in its application.  He was also adept at Book Destruction, knowing that the sound of ripping paper would wake me when The Bounce had failed.  UKBB, on the other hand, was a One-Trick Cat.  He had a raspy, distinctive, annoying voice.  He planted his considerable girth near my left shoulder, fixed me in his mournful gaze, and let loose a barrage of "feed-me-feed-me" meows from his phlegmy voice box, a sound akin to that produced by the handheld electrolarynx.


Electorlarynx user Roger demonstrates New TruTone Electrolarynx. Uploaded
from GriffinLaboratories's Channel

Without UKBB's electronics and Sam-I-Am's book destruction and body bruising, without so much caffeine raging through my system, I have achieved better and longer sleep, at least at the tail end of the nightly effort.  Falling asleep still occasions frequent tears.  My legs simply won't give me a freaking break and the moment of relaxing into the bed, which ought to be an "ahhh" experience?   Well, it isn't.  Crying about it is a relatively new response that my stern Id is not supporting, but even so, I have begun to wail and rale against the unfairness of it all -- for roughly 90 seconds and then Marmy usually appears, ghostly in the darkness, framed against the light of the doorway, chirping chirping chirping. This schizoid chick-impersonating cat is a sweet witch at night, and chirps at me until I fall asleep. Waking with her hot, long hair on my neck 40 minutes later is almost worth it. As I shoo her away and begin the process of pulling her fur out of my eyes, nose, and mouth (sometimes even an ear... what happens during that 40 minutes is something of a delicate mystery), her chirping transforms into the more familial representative *Ack*-*Ack* of Annoyance.

I have done a review of systems several times daily, checking for improvement in pain levels, in edema, in temp, even. There has been no postive result as yet from the ketamine treatments.

Tuesday, I went into the pain institute and had a "review" of the process. The party line was that my lack of response meant that further infusions were pointless.

Thank God, La Bonne et Belle Bianca Castafiore decided to come with us that day. I sat there, crushed, fumbling for words to try and change their minds... but La Castafiore did an amazing impersonation of Picard's "Make it so!" -- and so they did, agreeing to another round of three treatments at higher doses. Because of the increase in strength, there will be a 10-day interval between infusions.

So... Ketamine Infusion Number Four at 125 mg will take place this coming Monday. They were able to schedule me an hour earlier which probably will help with the rush hour traffic we have had to fight on the way home. If the last treatment is any indication, I am in for some temporary unpleasantness but am fervently petitioning God, gods, and the universe in general for an inspiring result, some significant pain relief that will tell us whether this is worth continuing.

In what was a touching but really silly moment, the Ketamine Guru's PA decided to promise me that if the ketamine endeavor proves a complete crap-out, "[they] will find *something* to give [me] some relief, [we] promise!"

Shades of my former cardiologist promising me I would never die while under his care. Where do these people come up with this absurd hubris?

Anyway, she was a very nice, well-intentioned woman, and her "promise" already had the tiny little itty bitty Flea Circus cheerleaders twirling and spinning on the head of a pin, hitting all the expected notes -- Prialt, Fentanyl ("to get you off of Methadone!"???), Butrans...

Oops, I gotta go... I just got an urgent email from the Central Bank of Nigeria.

*WARNING* The following video may cause serious itching and scratching...

Who told Carolina that they could play?

from IdiomsByKids

A quick summary of schtuff:

My BP decided to become an issue, after a lifelong stint of being too low, by catapulting itself into the rafters.  200/110 last week, 160/110 yesterday at the MDVIP go-to-guy's office.  This making no sense, we deduced that it is the fault of those nasty eye drops... Combigan. 

Clearly, it wouldn't be exactly wise to trip out on i.v. ketamine on Monday with hypertension, particularly as ketamine causes an initial increase in blood pressure -- as part of its hallucinatory charms. 

So I stopped the drops and will put my head together with the EyeGuy next week... and go-to-guy put me on Bystolic.  He also strong-armed me into purchasing a BP kit.  What was sweet, though, was that he had researched prices and such.  That just adds a certain je-ne-sais-quoi to his character!  WhisperWhisperMurmurMurmur... I think they have that at Walmart for $40... WhisperWhisperMurmurMurmur...

Last night it was still high at 188/93 and I cursed the blood pressure gods.  Today, though, ha!  Ha!  I laugh in the pimply red face of hypertension.  Just now:  126/71.  Ta da!

We flew across hill and dale, took a sharp left at the Lone Alp, and arrived early for my appointment with the General Surgeon yesterday morning.  All well and good, except for the note on the door, dated September 2010, announcing that they'd moved their offices -- moved back to the hill, right behind the dale.

We flew, again, this time mumbling and grumbling under our various breaths.  Hot Stuff that we are, we *still* arrived with five minutes to spare. 

But not a half-hour early, as instructed!  [This is a new pet peeve.  Don't schedule an appointment with me and then, when you call to remind moi, say, "Please arrive a half-hour early..."  No!  Make the appointment for the actual time you actually want me to actually be there.]

He has a great staff, and he, himself, was very personable and able to sell me on getting a portacath put in (installed?)!  I loved his claim that "no one has ever regretted it." So, I am to show up at the hospital next Thursday morning, at an ungodly hour, and he will toss that sucker in me, hitch it up to the subclavian, and voilà!  Instant intravenous access.  For some reason, I have to go through pre-registration at the hospital the day before.  Kind of ridiculous for an itty-bitty procedure of this sort.

Okay, so I am touchy.  It's the same hospital where I was gifted with enough trauma and malpractice, mispractice and other-negative-insinuations, including the very CRPS for which I am now constantly seeking relief.  I was told, back in 2005, that "no one will treat you here, not a doctor, not a nurse, not a pharmacist..." That came out of the mouth of an orthopedic surgeon I had consulted, liked, and with whom I had scheduled a shoulder replacement.   (The right side;  The Sentinel Event was subsequent to the replacement on the left.)  Two days before surgery and someone decided to tell him "who I was."

That's right!  I'm THAT GIRL!

How ludicrous that he would threaten me with the big black ball when it was his colleague's malpractice at the heart of everything.  Talk about misplaced emotion and severely impaired thinking.

So anyway... yeah, I may peer half-blind from my gurney next week and see the same anesthesiologist who screamed at me that he and his department had been discomfited by my complaints about being nearly killed and successfully debilitated by his hospitals' various minions.

I'm thinking I might spit in his general direction.  Or something classy.

So, if you are keeping score:  Monday is Ketamine Day!  Tuesday is Recover from Ketamine Day!  Wednesday is go hang at the hospital and bleed into little tubes day!  Thursday is Put-In-The-Port Day!  And... I think I have a couple of appointments elsewhere... that I prob'ly ought to cancel.  Fred and Ruby, at least, would appreciate that.

Ach.  Oh, and today I am supposed to start another month-long love affair with antibiotics.  But that rx is sitting over at the pharmacy waiting for Fred to pick it up.  And Fred is pooped.  So... I say:  Tomorrow is soon enough. 

I am making Executive Decisions to beat the band.

I am full of hope.

I figure, until proven otherwise, I am a person who is at one with possibility and potential, all coming together at a certain point that can be graphed as Monday Afternoon, when their various forces and energies shall gift me with an orgasmic... CURE. 

Or something.

Maybe the hallucination of a cure?
Maybe a significant reduction in pain?
Maybe not?

Hell, it's a luxurious option just to be able to rest and cavort within Possibility and Potential all weekend.

"On Monday evening, darling, when I am cured, let's try that new Thai restaurant we noticed five years ago!"
"Sweet cheeks?  Tuesday morning, while I enjoy a significant reduction in pain, as established by the Visual Analog Score, I would love to give you an intensely rejuvenating back massage, the way I used to when my hands actually followed instructions from my brain.  Where did I stash that gallon of Patchouli?"
"Yo!  Fredster!  Reserve a court for Wednesday and I'll show you my best cross court volleys... And would you PUH-LEEZE put that damn wheelchair in the freaking attic?"

It is heresy to say, I know, but my excitement rivals -- oh, hell, it outshines by far -- this weekend's ACC tournament.  Who told Carolina that they could play?

[Talk about confusion -- Somehow, my computer keeps sending me to the 2009 ACC Tourney website.  Had me feeling positively daft...] [Also... I am so old school... my brain rejects VATech, BC, and Miami as even being part of the ACC.  I still barely allow for GATech and Florida State...] [Oh, let's be honest!  The only teams that really matter are from the superior northern Carolina, as Clemson, Maryland, South Carolina and Virginia are just meaningless examples of linguistic linguini, mere placeholders.  It's all about Duke, Carolina, N.C.State, and, well... Wake Forest.  Or maybe just Duke, Carolina, and N.C. State.  Errrr, actually, between you and me?  It's all Duke and Carolina.  I mean think about it.  That match up has it all -- public versus private, and a rich history of four corners and three-pointers.]  [Waving to Jim Valvano -- ah, those were the days!  The Cardiac Pack...] [Okay, I'm done now...]

It's Duke and Maryland at 7 tonight, with Florida State and Va Tech to follow.  Virginia, Wake, State, Ga Tech, and Miami are all already out...

Shhhh! [Part 2]

Okay, so the doctor with whom I had an appointment on the 23rd turns out to be a quack.  I cannot tell you how badly I took that news.  There were numerous red flags, and to mix some good metaphors, the icing on the cake was being told that there was a good possibility that I could come home with the infusion pump and do the subanesthetic ketamine treatments by myself.

Ummm, okay-y-y.

I kept turning up other things and can only say that I spent a lot of time bursting into tears as I watched my chance at getting some real relief slip away.

Enter Jim Broatch, Executive Director over at RSDSA.  I sent out a Hail Mary email to the organization, and he wrote back with the name of another doctor I might try. 

I have to say... this new doctor does not check out as... what?  Pristine, I guess. He has had action taken against him in the past for lying on an application.  But he is actually a rocket scientist, so he is at least interesting.  Really!  He was an aerospace engineer originally...  Moreover, my friends, he has hospital privileges and is on the staff of a famous rehab hospital.  He's board certified and is included on my insurance's provider list. 

The first dood wasn't on that list and had no privileges anywhere.  His former partner left a patient brain dead a few years ago when he interpreted an O2 sat monitor alarm as being the alarm's problem... He just replaced the monitor without checking the patient.  [Reportedly, the nursing staff was having a collective cow at that point.]  Even after replacing the monitor, then finally realizing the patient was, indeed, coding, he failed to get him to the hospital in "a timely manner."  Worst of all, though?  He claimed people were out to get him because he (the doctor) was recovering from cancer.  Uh-huh.  Right.  That would explain the other 5+ malpractice insurance settlements as well.  I tell you, if a physician is impaired because of serious illness, I kind of expect him or her to recuse themselves from active patient care.  But that's just me...

Anyway, the first dood won't admit that this friend of his, who lost his license, is on staff at his facility -- but I managed to somehow talk to the guy on the phone there.  Same guy outlined the "take-the-ketamine-home-with-ya" bizarro program.

No, thanks. 

Fred was fairly smirking, which hurt my feelings. 

And when I told him I had a new, more better lead?  He looked crestfallen.

I don't feel much support for this.  It feels very lonely, scary.  I know I am being silly, but crapola!  There is NO other treatment available to me beyond polypharmacy, and besides not working very well, that just sucks. 

So... I am waiting for a call from the Hail Mary doctor that Jim told me about.  As a result of an immensely stressful couple of weeks and abuse of the old body, I am in a high pain period. 

I saw the ophthalmologist yesterday.  I dreaded it.  He wanted to see me, on average, every three months, as I have glaucoma.  So I waited two-and-a-half years.  What?  I was busy having surgery after surgery, infection after infection, fever upon fever, and so on.  You know the drill.  Also, my vision was getting bad despite treatment and I just didn't want to face it.

My grandfather was blind, and I watched his sight decline throughout my childhood, until he was living in the dark.

I cannot imagine not being able to read.
Not being able to see Fred's face.

Back in 2002, when Dr. DooDooHead was fervently trying to kill me and left me on a respirator with failing systems due to a completely avoidable adrenal crisis, the only bright moment I had to hang onto was the vision of Fred's face as he bent down to me when I finally opened my eyes in ICU.  He had a smile like I have never seen since, a smile that absolutely blessed me and made me want to fight, and live, because I wanted to be with that man, forever.

I have cataracts in both eyes, my eye guy said yesterday, and my pressures were both over 30 -- historically, they hung out in the low 20s.

The redeeming feature of my life right now is that worry will accomplish nothing.  It won't cure my infected bones, the massive inflammation throughout my body, the pain, the fractures, lupus' nefarious effect on kidneys and heart muscle.  It won't make my legs work, or my hands.  Worry won't make ketamine heal me, and worry won't allow me to pick a doctor with the right bright ideas. 

It will only make the pain seem worse, and the troubles, insurmountable.

Much better to remember that beaming face, enjoying his company while I knock out those ADLs that make life so incredibly meaningful.

Look, Ma!  I dressed myself today...

Sorry. Don't fret -- this pity party will be over before I bring out the first tray of hors d'oeuvres.

Premonition of Civil War

Salvador Dali, Soft Construction with Boiled Beans (Premonition of Civil War)

Okay.  This is where things stand:  After considerable confusion about names, addresses, phone numbers, and staffing... I was able to call the interventional pain center that is reportedly doing low dose ketamine infusions for CRPS/RSD.  That was about 3 on Friday afternoon.  The office was open until 4:30 pm but my call went to voice mail and I left a message. 

Then, of course, I started cooking something fantastically difficult.  I was also in serious pain, thanks to being over-emotional and moving around more than normal.  I don't know if I have mentioned that my right hip replacement, soon to have its 10-year anniversary, is, well, messed up and very painful -- the belief is that there's a post-replacement BooBoo.  Very painful.  Making sitting a nightmare.  It's called a periprosthetic femoral fracture.  (Turns out I did mention it.  What are the odds?)

The point being that I have to limit my time in the wheelchair and maximize my time with legs [carefully] elevated. 

So going full-speed ahead for four hours in the kitchen is kind of contraindicated.  If you've ever wondered why I cook so many things in stages, that's why!  I can rest while a dough rises.  I can rest while a protein marinates.  While something bakes, I'm in bed.

Not this past Friday.  In lieu of doing what I should have, I made ridiculous side dishes, each preceded by an intricate mise en place.  I made a sauce for everything on my menu, damn the calories, damn the weirdness.  I washed, dried, and put away every dish.  I washed things that weren't dirty. 

I even started a "kitchen" load of laundry, because God loves a clean oven mitt.

The phone rang twice.  Neither call was from the interventional pain center, confirming that they do subanesthetic ketamine treatments, that these treatments were custom-made for me, that we could start first thing Saturday morning, and that I'd be walking, dancing, twirling by Sunday evening.  Instead, I spoke with a flooring company and we agreed to a Monday morning delivery of 60 boxes of flooring, with installation scheduled for this upcoming Friday.  I told Fred that next Friday was *perfect* for me, as I would be cured of CRPS by then.  Unfortunately, I added, the installation schedule was going to interfere with my plan to win the Australian Open.  I was going to have to let Na Li take my place in challenging Kim Clijsters and allow the tournament to finish up a week early.

Luckily, changing my plans for swimming the English Channel (scheduled for the 7 - 8:30 Saturday morning activity block) didn't inconvenience anyone beyond the captains and stewards of Captain Haddock's private jet.  Clearly, I need to schedule more individual sporting championships -- out of simple courtesy to family, friends, fans, and support personnel.

So they didn't call.  So I served a many-coursed, complicated dinner that no one really wanted.  So I became terminally crabby, as well as, it sometimes seems, eternally depressed.  So Fred seemed not to be able to reference ketamine without also saying "horse tranquillizer." The first time he neighs, his ass is grass...

My go-to guy of MDVIP fame finally answered my middle-of-the-night email from Thursday.  Do you wonder why I trust this man as much as I do (never mind that he has saved my life a couple o'times)?

No worries. I agree with you about making the consultation visit and really seeing for yourself what it is all about. You are well read and educated on much of this stuff and you are very astute and I believe you will get a feeling one way ot the other whether this is right for you or not. I do know that group and I do have a few patients that I've shared with them and I personally have never had an issue. Give it a try...

That went a long way toward helping me to calm down.

I'm a stute!

In addition to being freaked out over the prospect of entering ketamine treatment, I failed to anticipate one of the more interesting things that happen when I am on the antibiotic regimen... my blood sugars, high from the impact of infection, DROP dramatically.  That's one of the reasons we're doing it, in fact.

An intelligent person, someone who was really A Stute, would have refrained from injecting herself with her usual 70/30 insulin.

It's just that the first two times on the antibiotic, the change in blood sugars happened on the second or third day. My numbers, this time, did not plummet so soon... it took a week. Still, I should have switched over to regular insulin only, and stayed away from the long acting stuff. Live and learn. And learn again. Then, in my case, relearn.

I have spent many hours reading... reading about the original protocols from Dr. Harbut, reading Dr. Schwartzman's studies, reading patient stories. Every so often, I make myself read something from the anti-ketamine crowd, a crowd that is not unsubstantial.

I can't ignore those who think it is too dangerous, too untested, too much of a question mark... because, though he doesn't press the point right now, that's Fred's opinion. {whinny::whinny::neigh::neigh}  Also, it turns out, the opinion of my half-sister, though she knows little about the technical, medical side of things. She said she did not want to have to come here to hurt someone. I'm still not sure whether she was referencing moi, The Stute, or the ketamine-wielding doctor in question.

I cannot seem to rein in [sorry] my wild hopes, though. What if my new insurance coverage won't recognize it as a valid treatment? What if my mind goes on a hike during the infusion, and doesn't come back? What if I am one of those who does not respond? What if I respond, but the pain comes back within a few days?

There is one poor man who worked hard to raise the $30,000+ for a trip to Germany and the ketamine coma treatment.  It was difficult and he had a slow recovery, but he was pain free for the first time in a decade.  He and his family travelled a bit around Europe afterward, and life was suddenly, amazingly, full of promise.  They boarded a plane a few weeks post-treatment and flew into JFK in New York.  He collected his luggage, a simple thing that he couldn't have done before ketamine, and headed out to find a van for the trip home.

He stubbed his toe.

Within minutes, his CRPS/RSD was active again, his foot and leg already changing color, becoming cold, the burning, burning, burning was back.  The stabs, the shooting pain.

True story.  A story I am trying to sit with for a few minutes each day.  Something has to keep me grounded.

American RSDHope, a website/organization that I have never much liked, has an entire section online dedicated to Patient Stories about ketamine treatment -- both the coma therapy and the subanesthetic version.  I think that I may have mellowed since the last time I visited American RSDHope, or they have become more responsibly cautious.  Whatever -- if you are looking for experiential reports, go there.

Below is a list of what I have read so far, the content of which is often redundant -- a redundancy that is both reassuring and frustrating.  Virtually all of it is available over at RSDSA, the site that remains, in my opinion, the most trustworthy of CRPS organizations. Excuse me for not giving the full citations.

Overview of Ketamine Infusion Therapy

Multiday Low Dose Ketamine Infusion for Treatment of CRPS

Use of  oral ketamine in chronic pain management

Ketamine in Chronic Pain Management:  An Evidence Based Review

The neurocognitive effects of 5 day anesthetic ketamine for treatment of refractory CRPS

Safety and Efficacy of Prolonged Outpatient Ketamine Infusions for Neuropathic Pain

Two Approaches to Ketamine Move Forward for Complex Regional Pain

Ketamine Treatment for Intractable Pain in a Patient with Severe Refractory Complex Regional Pain Syndrome:  A Case Report

Ketamine Provides Effective and Long Term Pain Relief in Patients with CRPS Type I

Efficacy of Ketamine in Anesthetic Dosage for the Treatment of Refractory CRPS: An Open Label Phase II Study

Ketamine:  Does Life Begin at 40?

Gambling on experimental treatment for pain

Glutamate and the Neural Basis of the Subjective Effects of Ketamine

Intravenous Ketamine for CRPS: Making Too Much of Too Little?

Outpatient Intravenous Ketamine for the Treatment of CRPS: A Double Blind Placebo Controlled Study

Effect of low dose intranasal (s)-ketamine in patients with neuropathic pain

Trapped in a Medical Nightmare: NJ woman travels to Germany for banned medical treatment, ends up fighting for her life

Update on CRPS (Johns Hopkins 2004 Annual Pain Meeting)

Update on low dose ketamine infusions
 
CASE REPORT:  Complete Recovery From Intractable CRPS Type I Following Anesthetic Ketamine and Midazolam
 
Relief for Worst RSD May Lie With Ketamine Coma


What if I get the call tomorrow, and what if they say they aren't doing ketamine infusions?  What if I get turned away because of co-morbidities?  What if it is inaccessible due to cost?
 
I can't allow myself to entertain this not happening.  I deserve a shot, a chance.  Oh, please, please, please... let this happen, let me try, let me at least try.
 
In the meantime, The Manor needs cleaning and straightening.  Fred is defrosting a couple of Wild Beast Loins.  It is a beautiful sunny day, and if the yeast will proof, I see deliciously fragrant homemade bread in our near future. 

ketamineketamineketamine

i'm too tired to go into it at the moment, but it looks like i may have a chance to get ketamine infusion treatments (the "awake" version) for crps. 

the problem? 

(and you know there has to be a problem.)

the two docs doing it are... less than pristine, far from stellar, not exactly objects of admiration. 

as the referring health practitioner put it, they are "cowboys."

one had his license revoked for a few years and has multiple medmal settlements.

the other is a D.O. not well liked by his patients, and is really into the ka-ching-side of pain management -- procedures, procedures, procedures. costly intervention!

 however, on the plus side?  the referring health practitioner reports that he "used to be cute."
(well, that settles it.)

additional problems?

(and you know there have to be additional problems.)

getting anyone in my life on board to be supportive about ketamine infusions.  i will need support -- logistically, physically, emotionally.  also a problem?  pitching this to my "go-to" group of doctors, all of whom are less than keen about ketamine anything, much less intravenous infusions of it done on purpose, repeatedly!  i expect resistance based on the unresolved osteomyelitis/infected prostheses and a couple of other persnickety comorbidities.

should i start a petition?  a write-in campaign? 

if i want this treatment, if i can get insurance coverage for it (oh, yeah, i forgot to mention that as a potential problem... mwa ha ha), what does it matter what my "team" thinks?  or my life partner? 

or even la bonne et belle bianca castafiore? 

i remember when the prospect of "only" receiving temporary and incomplete pain relief was a prospect not deemed worthy of pursuing.  now that i have a good dozen viable suicide plans, "temporary and incomplete" sounds downright enticing.

fred's only comment thus far relates to the probability of hallucinations during treatment... i keep trying to tell him that i doubt he'll be able to notice much of a change.

i'm grateful to the kind practitioner who told me about this today.  she risks putting herself in the middle of an uncomfortable and unsupported referral.  i am enormously grateful that she took the risk. 

i don't quite understand why the availability of "awake" ketamine infusions for crps/rsd in this region of tête de hergé isn't being shouted from our elevated medieval slate rooftops... but if it works out for me, i'll be yodelling the news throughout hill and dale.

from the Holy Wikipedia entry on CRPS:

Ketamine, a potent anesthetic, is being used as an experimental and controversial treatment for Complex Regional Pain Syndrome. The theory of ketamine use in CRPS/RSD is primarily advanced by neurologist Dr Robert J. Schwartzman of Drexel University College of Medicine in Philadelphia, and researchers at the University of Tübingen in Germany, but was first introduced in the United States by Doctor Ronald Harbut of Little Rock Arkansas. Doctor Harbut and Doctor Graeme Correll (of Queensland, Australia) first began studying the use of ketamine in the treatment of CRPS patients. Dr Harbut's first CRPS patients in the USA were successfully treated in 2002 with the low-dose ketamine infusion; also called the "Awake Technique" and he soon began work with FDA on an approved protocol. In early 2003 Dr Harbut began sharing his treatment methods with the Doctors at Drexel University College of Medicine, including Doctor Schwartzman. The hypothesis is that ketamine manipulates NMDA receptors which might reboot aberrant brain activity.


A 2004 article discussing ketamine infusion therapy states, "Although ketamine may have more than one mechanism of action, the basis for using it to treat CRPS may reside in its strong ability to block NMDA receptors. Experimental evidence suggests that a sufficiently intense or prolonged painful stimulus causes an extraordinary release of glutamate from peripheral nociceptive afferents onto dorsal horn neurons within the spinal cord. The glutamate released, in turn, stimulates NMDA receptors on second-order neurons that produce the phenomena of windup and central sensitization. It is reasonable to consider that, by blocking NMDA receptors, one might also be able to block cellular mechanisms supporting windup and central sensitization [4–7,15]. Ketamine is the only potent NMDA-blocking drug currently available for clinical use. Our interpretation is that an appropriately prolonged infusion of ketamine appears to maintain a level of ketamine in the central nervous system long enough to reverse the effects of the sensitization process and associated pain."[41]


There are two treatment modalities; the first consist of a low dose subanesethesia Ketamine infusion of between 10–90 mg per hour over several treatment days, this can be delivered in hospital or as an outpatient in some cases. This is called the awake or subanesethesia technique.

The One Where I Hum "Qué Será, Será" Like Doris Day On Ketamine

Hullo, all. It's been a busy week; I'm exhausted. So straight to the most recent CRPS MedWorm offering. It's a case study, is all, but a good reminder that sometimes the "cause" of CRPS can be a seemingly insignificant event:

Summary
Complex regional pain syndrome (CRPS) is a chronic progressive disease characterised by severe pain, swelling and changes in the skin. Precipitating factors include injury and surgery, and a variety of causes have been described. We present the case of a 68-year-old lady who presented with features indicative of a CRPS following steroid injection for a ‘trigger’ thumb.
--Published in the October 2010 issue of the Journal of Plastic, Reconstructive and Aesthetic Surgery, Volume 63, Issue 10

Something equally innocuous can cause "spread" of CRPS, as well, which is why someone with the disease can be particularly anxious about injections, blood draws -- and, needless to say, things like surgeries.

I have wanted to politely bop a few nurses and lab techs on their pointy little heads for rolling their eyes at my concerns about being stuck in a CRPS-afflicted limb. Even my top-notch, worldclass, wunnerful::wunnerful surgeon doesn't follow all the established precautions for preventing spread... I have shared with him the protocols I find, which include early admission for i.v. infusions and pain meds (yes, ketamine is involved!) and similar infusions afterward -- something that purportedly stops spread and prevents "flare." [These are the recommendations at the Hospital for Special Surgery, an orthopedic Mecca.]

If anyone doubts how far reaching the Dr. Scott Reuben scandal is? One of the often recommended articles on prevention of CRPS spread during/after a surgical procedure is called, nattily enough: Preventing the Development of Complex Regional Pain Syndrome after Surgery
and yes, the author is "Reuben, SS."

He pops up again with Perioperative Pregabalin Reduces Neuropathic Pain at 3 Months after Total Knee Arthroplasty (TKA) and if you are certain that he is not simply a mercenary in his promotion of Pregabalin, then you are a trusting, simple, stupid soul.

On the other hand, the level of my distrust might be excessive.

[It could happen.]

The ideas posited in Surgery on the Affected Upper Extremity of Patients with a History of Complex Regional Pain Syndrome: The Use of Intravenous Regional Anesthesia with Clonidine are considered indisputable, or were, given Reuben's ghoulish signature on the work.

I look forward to the day when baby and bathwater can be carefully and correctly identified, separated -- and the cold, scummy liquid discarded.

In the meantime, take all the precautions that you can when someone approaches your CRPS-afflicted regions. At the very least, say "Stop! Don't touch..." and then take a moment to talk things out with the person in front of you, readying to wield some invasive tool -- because as much as I have maligned nurses and phlebotomists, I have encountered some who were very well informed and who promptly took preventive measures (using the smallest of butterflies, avoiding nerve-rich areas, etc.).

What is immeasurably valuable is the relief that comes from dealing with a health care professional who is familiar with this bug-a-boo syndrome.

The very best advice about surgery in people with CRPS? Avoid it.

Don't get me wrong... You *can* rely on certain truths in this world, in this life.

Scott Reuben is still a dirtbag, and Jose Ochoa remains a big, fat turd.