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.