Begging and Beseeching, Entreating and Imploring

  “Hope” is the thing with feathers -

That perches in the soul -

Emily Dickinson 1830–1886

Okay, so I'm STILL waiting for a call back from Philly about an appointment with the illustrious Dr. Schwartzman (see previous gush).

After days of some sort of Stupid Attack, I am finally remembering my well-earned expert opinion on... Experts.  Correction!  Make that: I know whereof I speak concerning those experts celebrated by a cult-of-personality-based community.  I've lots of unfortunate experience in this arena -- Derrida, Fish, Foucault, Jameson -- but not near enough, apparently, since here I sit in Marlinspike Manor's Computer Turret instead of the nearest Ivory Tower.

It's really more the Middling Players who are the actual offenders, anyway -- Bersani, Hollier, Lentricchia, Most Poets.  You learn the most from this moderate and scruffy crowd but you also accept more [unwarranted] abuse than is wise.  The accumulated angst and stress of simply sharing a town with them eventually detracts from the information received.

Note to other bloggers contemplating making their own Lists of Four:  Alphabetize.  That's the only solution to the Order Problem.  Well, I suppose you can also opt for a Living versus Dead construction, further subordered by Date of Death.

I am reminded of a conversation with Grader Boob from a few years back.

Grader Boob: Great news. I finished that pain-in-the-ass paper for the Incomplete I got in Misogynous Medieval Literature my last year in grad school. Knocked that sucker out over the weekend.


Me: Congratulations, My Brother-Unit! So what did the prof have to say?

Grader Boob: Not much. He died six weeks ago.

Grader Boob (again): But that's not the point...

I consider myself lucky to only be at the point where my doctoral committee now consists entirely of Emeriti.  Honorifics and Soporifics, that's the name of the game!

Putting my dementia aside, and returning to the present stressor of trying to relieve this soul-destroying pain afflicting my body, and, some might argue, my cognitive powers, as well ===>>

Is it Dr. Schwartzman's fault that there's an attention-starved group of people who share a sharp interest in the pain relief he may be able to offer?  Not in the least! But I wonder if he has a sense of it, really.  Does he feel it in his bones, in his hands?  We're going crazy out here;  We're going nuts for some relief.

In other words, don't screw with me when it comes to Matters of Hope.  Don't deign or feign, just shoot from the hip, be direct, be honest.  I say again:  Don't screw with me when it comes to Matters of Hope.

Is it to Schwartzman's credit that he is equally well known for being a compassionate man, and that compassion complements intellect like no other attribute known to humankind?  Of course it is... particularly since that assessment appears to have held very true over time. He sounds like a remarkable person.  I hope to meet him.

Someday.

Does any of this mean that his Schedule Coordinator gives a royal patootey about me, sitting here in rural Tête de Hergé (très décédé, d'ailleurs), once again pondering a Do-It-Yourself Amputation, though I still haven't solved the problem of how to cut off the last arm without at least minimal assistance?  Oh sure, I could probably rig something up with pulleys and the use of my awesomely muscular lip muscles, but the whole plan goes pfffffttttttttt once I decide that I don't want to bleed out, and that tourniquets are gonna be necessary. 

Errrr, I think not.  Said Scheduling Coordinator surely has separated herself from the needy tentacles of the thousands of patients seeking an audience.  She guards the gate, keeps the dates, protects the doctor, gets it done.

If the cult-of-personality-based community of CRPS sufferers were a wealthy community, things would be different.  We'd have decent DIY Amputation Kits, already! The right vises would be included, there'd be extra hardware, sharper blades, and clean-up would be a breeze.  Appointments would be made, and made reasonably.  For instance, I confess to thinking that there MUST be someone else in the Neuro Department with at least a faithful simulacrum of Schwartzman's skills, having been trained by him -- and with whom I might have an appointment within a reasonable period of time.  I am redefining "reasonable period of time" daily.  Right now, it means "within a year." Yesterday, it meant "around six months." Last Thursday, when I made First Contact, it meant "any day now, possibly tomorrow."

Yes, so... the Gatekeeper of Appointments has laid her foundation -- I gasped, suitably, when immediately reminded that the "next available" appointment with the Famous Doctor was in 2013.  Right.  Got that.  Knew that years ago.  Part of why I never bothered.  Y'know?

But, yes, so... I gasped.  "REALLY?  YOU'RE KIDDING?" It was passable.  She seemed satisfied that I was suitably in awe.

Because, of course, The Personality has thrown me the bone of a promise of consideration, of being worked into the packed planner.  I recognized Emily Dickinson's Thang avec Feathers right off the bat.

Then it became a matter of her never having heard of my health insurance coverage, you know, that coverage initiated by My Hero, President Obama.  Of course, me yelping at her about how it is administered by "JEFE" instead of the correct "GEHA" did not promote my cause in the least.  I do this regularly, Friends.  I don't know why JEFE strikes me as the thing to yell out in the identical manner that I might scream BINGO, but it does. 

By the time I was able to mutter GEHA, it was too late, I was relegated to the Hinterlands, to a I Will Call Back Tomorrow Morning Status.  Also informing that decision was her strange assertion that "the computer won't take your insurance's 800 number." I was tempted to follow up my calls of JEFE, GEHA, and BINGO with OVERRIDE, but thought better of it.

Enter Buddy the Kitten.

Oh, hush.  You knew he was going to snake his little squirrelly self into this mess.

He was apparently back at chewing wires on Friday and the phone was out most of the morning.  Therefore, I choose to believe that she tried to call me, and could not, due to the dastardly deeds of this reprobate kitten.  Still, I had the phone in my shirt pocket the rest of the day, even as I worked with doughs and slippery cold dead fowl (but never at the same time, oh no, never at the same time!).

Fine, thought I, slamming shut the oven door on the last batch of chicken carcasses.  Monday, she's gonna call Monday.  Monday is rapidly disappearing as I waste time writing this dejected post.

Why don't I call back?  Well, I am going to, thankyouverymuch.  I have established an artificial deadline of 3 PM, at which time I turn into someone with a backbone.

Unfortunately, my extensive experience with cult-of-personality situations and the gatekeepers thereof tells me that I will be dealing from a position of weakness, as I am in the position of begging and beseeching, entreating and imploring. 

That was Fred's contribution to the process thus far:  "Have you, ma chère prof, sufficiently begged, beseeched, entreated, and implored?" 
The answer is NO.  I haven't cajoled enough, haven't made my case, haven't had, in fact, the least bit of interest in going down that road. 

Am I supposed to announce that my pain score is stalled between 7 and 9 -- when I actually don't even believe in or understand the God-forsaken System of Misery Measurement?  Am I supposed to have my doctor make the call, so as to invoke preening, primping, fawning, and immeasurable posturing?  Should I weep over the telephone, sob a bit?

Well?  Yes?  No?  Never! Maybe?  It all depends?

I go back to consult with the doctor who prescribed the ketamine infusions for me here on Thursday.  It's going to be a chess match of a conversation.  Hopefully, I will have, by then, a date for evaluation in Philly, which would give me a bit of a conversational edge.  I want him to know how much I appreciate the effort he's made here but I also need him to accept that a different protocol is in order.  It's not that he is not as "good" as Dr. Schwartzman;  It's an issue of specialization and experience.

I don't feel badly about how this all got started.  In fact, I need to remember that -- all I did was email The Expert with a real question about how to get the most from these lower dose and infrequent versions of subanesthetic ketamine infusions. 

And The Expert knew compassion and said Why don't you come?  And what all of THIS is (waving my hands around in an effusively inclusive way)?  This is ME, TRYING.

Darned cat.
It's all Buddy's fault.

 

Neuro Time

This past week, a bunch of two-faced, aging, good-intentioned white men repeatedly advised me to "rest and heal." These self-same advisors booked me for nine medical appointments. The Fredster and I are exhausted and Ruby the Honda CR-V gently coos and softly honks her need for tender loving care, and maybe a rinse to stave off the sticky pollen.

My body is torn up, the recipient of speed bumps and humps, the jostling of those huge metal plates that cover up an aged and failing infrastructure, the intimate physics of sweetheart curves. The seatbelt alone has become an instrument of torture. At least the freshly operated shoulder is on the left this go-'round

The cost of the various parking garages leaves me with but a pittance in cash. We spent over $35 just for the privilege of stashing Ruby in a Gimp Space. I am going to put a baseball bat in the car, so that I can destroy the many cars being parked in Gimp Spaces by Non-Gimps. Very frustrating.

Of the nine appointments, four were at the Infectious Disease Dude's place. No, of course not, there is nothing I would rather do than be stuck again and again for bloodwork because my PICC line will receive various antibiotic cocktails, but will not release any blood. CrazyLadyNurse had, thankfully, saved several week's worth of gossip about her divorce and her well-endowed new boyfriend. I was delighted to learn that her bedsheets get caught on his amazingly large johnson and that playing "tent" has become a favorite passtime. The Nurse:Pharmacist is a relief, being very normal and polite. She just got back from ten days in Hawaii and it shows -- All of us punked-out sick folk stared at her healthy tan with envy.

Why were we there so often? Because the ID doc was not pleased with the vancomycin trough levels, so there was much dicking around with the dosage. Given that he cannot even justify why we are using vanco again, it is irritating to then get caught up in such minutia.

I finally managed to make and keep an appointment with my neurologist -- I'd last been there in June 2008. His eyes bugged out when I explained the year+ long saga of osteomyelitis and infected prostheses, the two stays in ICU, the vents, the steady worstening of CRPS. He praised my failure to go insane, then pretty much wrote me off as intractable -- with spreading, intractable disease. I wanted to cry, but did not.

And, true to himself, he again muttered his objection that "spreading" is not the appropriate moniker for the phenomenon of CRPS/RSD symptoms, ummm, invading? moving into? branching out? into other areas of the body than the area affected first -- in my case, my right lower leg and left lower arm. Apparently, the concept is hard to explain, because he has never satisfactorily done so -- or, more likely, he does not believe that CRPS/RSD jumps ship from original injury sites to other limbs or internal organs.

{*Whatever*, as the kids say...}

No matter how the phenomenon is fueled, the results are the same as in my other areas of causalgia, so I don't worry about winning a war of words. I mean, look how the new label CRPS has *not* caught on; Even longterm sufferers don't get the distinction between Types 1 and 2 -- forget health care professionals... (I still hear the echo of the nurses in ICU.)

The reality of all the infections of the last year or so has, at least, made our decision about the pain pump or the SCS easy -- there is no way either could be "installed," given my body's lack of fondness for implants. Of all the members of my medical "team," Neuro Man has been the stalwart one in insisting on following through with a procedural approach before writing each off as a waste. The first time we met, he set me up to see a doctor who specialized in treating CRPS/RSD with the whole range of injections, blocks, epidurals, etc. At that point in time, I was insane with pain and confusion. I was reading anything I could get my hands on, talking to anyone who seemed to have a clue.

There quickly came a day when -- after the sixth lumbar block with no effect except spasms and a slight warming of the limbs -- I questioned why we were pursuing a tactic that did not work. I especially questioned why none of these procedures were being followed up with intense PT -- what I understood to be the crux of the matter. That was my last appointment with Dr. ProcedureMan -- later, I read where he was accused of embezzlement and fraud -- along with his brother, an accountant.

Neuro Man cares a lot, and I appreciate that. It's not his fault that there is no wealth of knowledge to inform the treatment of CRPS/RSD. He cares too much. I end up worried about him at the end of every visit -- also, I leave confused, now, as to any sort of future plan. That's my fault, though, explicitly. I hear my voice -- raspy, infected -- as I told him "I don't even want to know what the future holds... because it looks pretty obvious." He gave me a hug -- the kind that doesn't actually touch. An air-hug.

He is hung up on pain -- he completely gets how bad it is, and is always angered that I live with high levels, constantly. He wants me to take scads of meds that, yes, probably would eliminate many symptoms -- but at the expense of consciousness.

Here and here , one finds brief primers on CRPS pain and its lists of usual drug suspects to treat each sort of pain -- from electric and lancinating to localized and sharp to sleep-disruptive to spaz attacks.

The question becomes, as hours pass into days, days to months, to years -- what quality of life remains after throwing all these pills (and more) at the suffering?

I had hoped he had some new trick up his Hawaiian sleeves.