Wednesday, March 5, 2014

CRPS Update

I should let you, Dear Readers, know upfront that this is an update on the personal level -- although I've been doing a fair amount of reading "in the field," the reading is mostly above my head or personal interest stories.  Why share that with you when I can bitch and moan on my own?

Remember the fundamental principle here at Marlinspike Hall:  Whose blog is it, anyway?

Since life switched from our Renaissance King-sized bed to my single hospital contraption, decorated with an understated trapeze attachment in matte black, I've been in a steady decline.  Well, it's not much of a leap to needing to ask for a hospital bed to that assumption, eh?

Not that my Purple Prose Gratitude Journal is getting fat with loopy handwritten entries, but I will admit that when my body goes into spastic mode, the understated trapeze attachment softly jingles and jangles, calling up memories of one of my favorite Southern Tête de Hergé's front porches and its many gentle wind chimes. Those same spaz attacks bring waves of desire for the blueberry moonshine that also rise up in memory of that ivy-covered porch.  Ahem.

Many is the time I've sworn that it is the spasms that will one day make me paper my body with Fentanyl patches and mix up a chocolate pudding laced with lethal doses of a dozen sweet drugs.  If I did not think that a peaty single malt would make me lose the pudding, it'd replace blueberry shine as my favorite strong drink.

Ah, ha ha, just joshing.

In any event, I've now become the Manor Resident who grabs sleep where she can, and that usually is long after dawn.  This is something I intend to change, and soon, perhaps as soon as tomorrow.  Tomorrow may also see me pitching in to help the Genetically Indentured Manor Staff, as so many have taken vacation time to warmer climes.  A little vacuuming, mopping, laundry, poofing and fluffing never hurt anyone.

Fevers are up about a degree and I blame those mo'fos for my general decline.  A febrile state makes for great melodrama (Oy! I am burning up, as if in the very flames of Hell, and so on, and so forth) and laziness (Is that cat hair clinging to my electrostatic hospital bed rails?  Ew, gross.  SOMEONE should do a bit of dusting around here, damn it!).

But, fevers also are truly... tiring.  Mostly the parts where they're going up, and the parts where they're going back down.  The steady heat is not bad.  Kind of energizing, even.

CRPS is not causing the heat waves, of course, it's the untreatable osteomyelitis, perhaps a touch of lupus. And yet, CRPS so hates to be excluded, and so tends to get nasty during a persistent fever.  So it's spazspazspaz and burning neuropathic pain married to the deep ache of the bones.

I've mentioned before, or hope I have, that I employ more than a bucket load of drugs to handle these things. Heck, I got me a graduate degree at Berkeley, so you know I turn a quick eye to all that is alternative, complementary, or adjunctive therapy.  What works best is ice... until those medical sadists, the Physical Therapist Gangs, beat it into my head that cold is bad, bad, bad, wrong, wrong, wrong.  So I moved on, but how many times can you watch repeats of Downton Abbey?  So I began an incisive, lighthearted study and practice of mindfulness.

The initial forays into mindfulness for CRPS led to anaphylactic shock until my mentors made an adjustment and removed any references to the "happy place."  Once that was taken care of, it turned out to be pretty simple.

You don't run away from the pain.  Like a cat, and some dogs, you circle three times, wiggle your butt a little, and curl up smack dab in the middle of that pain.  There you stay until you're through it.  You don't speak much about it, beyond what may be necessary.  But you snuggle into it, stare at it, see it, observe it. Thank G_d, you don't analyze it (until pressured by such asshats as physicians).

For long term and unending severe pain, like mine, you mix in the occasional distraction, and that would be best defined as whatever works at the moment.  Mahjong, when played in a zen state, can be very effective. The vogue of marathon reruns of classic television might fit like a glove one day, and repulse the next. Law and Order SVU, for example, has no usefulness any longer in mindlessness/mindfulness sessions, whereas the Criminal Intent version, or the early original shows -- the variety pack -- are entertaining.

When mindless mindfulness is flat out denied by a pouting, infantile CRPS patient, that's when such an ingrate should opt for a comedy genre (literary or televised/streamed) or the infallible humor of felines.  Being fussed at by Marmy Fluffy Butt because you dared shift her tiny frame a few centimeters gets a belly laugh every time.  Dobby in a box is hysterical.  Buddy the Maine Coon cracks a person up just by facial expression. And all three have extensive nursing backgrounds.  A kitty massage is a better soporific than anything Big Pharma can dream up.

Music requires a careful touch.  The mp3 player yields mysterious tunes in shuffle mode, sometimes so eerily reflective of one's severe pain that it's simply not a decent option.  Unless, of course, you need to cry and have not been able to produce tears, either due to the constant dehydration from the constant fever, or due to the aridity of my heart.

Most of the time, though, music is a great aid to treating pain, especially in those 20-35 minute periods before the breakthrough meds kick in.  Also, when the dark is terrifying -- you know, when the threat of dawn edges into the window pane and you think: "No, not again, not another night of no sleep."  Then you must make yourself circle thrice, settle in, and call up Nina Simone and Eric Clapton, certain bits of Neil Young, ending with the Brett Dennen of around 2004.  That's this week's menu.  Last week saw more of the Decemberists, my beloved John Hartford, and the Wainwright family, Loudon, Martha, and Rufus.  I am finding great focus for my pain in Johnny Cash's American Recordings and the very sweet beginnings of Bonnie Raitt, from a very sweet album recorded in her parents' garage, with their supremely sweet jazz musician friends.  She sounds so wavery and young, so un-twangy, that knowing every bit of her later sounds is enough to make me weep.

I'm undergoing a good many variations in the CRPS experience, feeling stuff that I thought would never return, rapid cycling from red to deep purple, cold to hot, electric strikes that produce yips of howls. The everpresent, though, is what makes "suicidal ideation" something to ridicule.  The deep, deep pain, the burning bones that are somehow also ice. The "movement disorder" -- but we've covered that.

On the up-side, I have lost most of my decrepit fingernails and the regrowth seems healthier.

Where did I put that Purple Prose Gratitude Journal?

As for how it's going, breaking in my new Obamacare doctors -- last Thursday, I met the doctor who will be my Primary Care.  She put together a hasty Problem List.  I decided CRPS should top it, and so mentioned it first.

Blank look.

Okay, so I reverted to "RSD" and before I could unpack it, she said, hand waving in the air, "Oh, I know. Something Sympathetic Something."

I shot her a bright smile. "Right!"

And when they gave me their efficient printout record of our brief initial alliance, I saw that my primary problem was "CLPS." Fred giggled.

Sorry, loves, but I have to go.  I feel a need for Townes Van Zandt.  twitchtwitchtwitch.  I think I hear his clunky cowboy boots out on the Front Porch... and the gentle call of windchimes.

© 2013 L. Ryan

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