Stasis

Well, it looks like I may keep blogging after all.  Your spontaneous cheers of approval warm the cockles of my heart.  Thank you so much (my best Brenda Leigh Johnson impression).

It was an afternoon of misadventures, my favorite kind of afternoon.  I do feel awful, though, for dragging others through these fun times, and by "others," I usually mean Fred.

I had not been to my pain management doctor's office since March -- at which time two things happened:  the PA I had been seeing there quit, and I began the Great Subanesthetic Ketamine Adventure over at the Hospital for Catastrophes.  Each one of these two things engendered other things until I was practically tripping over all that accumulated quiddity.

The PA leaving caused me to question the quality of care I'd been receiving.  It sounds odd, I am sure, but Allison the PA was light years ahead of the doctor of record, in terms of staying abreast of CRPS research and treatment opportunities.  He had begun to depress me.  I would show up every month with questions from what I'd been reading and about what others had told me.  I swear that I was not obnoxious about it, and never dominated his time.  Fred used to time him from the moment of entry to the second he grabbed the door knob in retreat -- and this doctor rarely stayed in the exam room longer than 3 minutes. 

At some point, Dr. PainDood decided that I did not understand my situation.  He began taking my gesticulating hands in his big old dry ones, looking me soulfully in the eye, and saying:  "Prof-de-Rien, there are no more treatments to try... There is nothing that is going to help... We can only manage the pain to the best of our ability."

He's a very handsome man, and he would pause, head held at a flattering angle, long arms and finely tapered fingers extended -- Dr. PainDood loves handshakes, handholding, all things hand.

[I suppose that is preferable to, say, the kisses I used to field from a certain rheumatologist, and it's definitely superior to the tears that always flow from the sweet, sensitive eyes of my neurologist, The Rock.]

I got the same speech, month after month, fighting it, hating it for the first several iterations... then caving, imploding, believing it.  And so it was that nothing ever changed, except for a worsening of CRPS, then the onset of infected prostheses and osteomyelitis, all accompanied by the collapsing joints of avascular necrosis.  Life may not have been anywhere near good, but there was a measure of orderliness to my degradation.  Woo-hoo!  I got worse but my pain management stayed the course;  I got the same medications, at the same strength, month after month, year after year, and it was consistently ineffective.  If I dared raise the specter of change, I got The Speech -- and the Handholding.

There came a visit, about 3 years ago, I think, when the last remnant of rebellion in me reared its faltering head.  What about x, what about y?  Couldn't we give z a go?  And then, poof, Dr. PainDood took back both his hand and his spiel, declared me to be on permanent pharmacological pain management, and turned me over to his Physician's Assistant, Allison.

I thought she was punking me, for sure, the first few times she began the appointment with news from a conference on neuropathic pain, with an update on the research into the inflammatory response, or with the suggestion that we give an old drug a new try at a radically different dose.  Sure, sometimes she pitched ideas that were clearly birthed in left field, but always, always, I knew that she believed that improvement was possible, that improvement was necessary.

Plus, she totally understood that my hands HURT, and so she left them the hell alone!  (You've no idea how much I dreaded Dr. PainDood's obsession with the shaking and holding of hands.  I figured it to be some sort of bizarre challenge to my integrity, a nonverbal inquiry into whether my continuing ed credits from the Emily Post Institute were up-to-date.)

She and I both thought that Ketamine might be my Big Chance, and it was Allison who discovered that there were treatment opportunities right here in Tête de Hergé.

You've probably heard about "contracts" between doctors and patients when it comes to the serious matter of narcotic pain management.  I probably signed one but I don't remember.  The guidelines make sense and I always followed them -- if I get my pain medications from this doctor, then I don't seek pain medication from any other doctor.  I take my meds as prescribed, and I don't sell them or give them to anyone else. 

The only deviant behavior I exhibit is a tendency to not take as much as I am told to take.  That's it.

Since my last appointment with Allison and my first appointment today with her replacement, Maria, I have tapered off of methadone and Percocet, and lived on ibuprofen.  I have been in more pain than I knew was possible.  I did it so that the ketamine infusions would have the best chance possible to work -- you gotta let that stuff antagonize the heck out of those NMDA glial cells, hoo-baby, uh-huh!

Of course, I've pretty much been bed-ridden from pain and sometimes I devolve into Pure Twitch.  Ibuprofen was dissolving my stomach lining, and beginning to mess with my kidneys. 

The only option offered after ketamine failed was to have an intrathecal pump "installed" so as to receive the very toxic, very potent, crazy-making drug Prialt, a synthetic model of a certain sea snail's venom.  Being too close to crazy already, and since my spine is riddled with thousands of micro-fractures already... I declined.

So the catastrophic hospital politely returned me to the care of Dr. PainDood, although they cordially invited me to check in every few months to see what might be blowing in the wind...

It's not like I've been hanging on the street corner these last few months, making drug deals -- at night, traipsing off to raves, clubbing -- life a sudden party.  Still, my welcome back into the bosom of narcotic pain management this afternoon was fraught with suspicion.

Between March and July, where had I been getting my medication?
Did the doctor at the catastrophic hospital prescribe me any pain killers?
Was I sure?
Did I understand the question?
Was I sure?
Did the doctor at the catastrophic hospital prescribe *anything*?
Was I sure?
Did I understand the question?

The idea that a patient would stop taking narcotics on their own just did not compute.  To cheer them up, I told them that I was filled with excitement at the thought of taking opiates again.  "I can hardly wait," I crowed.  "Please, please, return me to the stagnant status quo!"

Okay, so I may have left out that when we showed up this afternoon, they had no record of the appointment.  Did I fail to mention that the new PA, Maria, kindly worked me in, so that we didn't have to make another trip across the wilds of The Lone Alp?  She sorted through a complicated history in an organized way, applauded my reduction of methadone dosage from 40 mg to 10 mg, and...

suggested acupuncture.

Things are back to normal.