Thursday, October 9, 2014

It's important, so do it.

Quick, note the day and time:  I'm having a productive day.  Two loads of laundry, the weekly refilling of the med box, several psychological evaluations of the Feline Triumvirate, orientation of several new Marlinspike Hall Manor Gift Shoppe volunteers, coffee -- perfectly strong and I did not pour boiling water in my lap in its making!

Sure, there were errors, flukes, lots of pills on the floor, and the Gift Shoppe may be in retail peril, but there is an abundance of clean covers, ranging from light and kind to tender skin to heavy and cold repellent. None of the cats aberrant behaviors have improved but we have lowered alert levels to DefCon 2, hoping that we can continue to deescalate tensions and avoid Buddy killing Marmy, or Marmy shifting from clawing defense mode to slashing aggression.  Most of all, we would like Dobby to retain some fur, as when the little guy is stressed, he releases all of his hairy hairs, usually on my clean clothes.  And, if we put all our desires out there, well, we'd like him to shut up, as well. He's the Town Crier of our world and, honest to God, it sounds like a nonstop tirade of a lisped "Oyez, Oyez, Oyez!"

Ahem.  Yes, I'm having a day!

My right foot is probably as small as it's ever been in the past 12 years. If you ignore its purple and frigid state, well, hell, it almost looks like a doggone foot!

The claw phenomenon is, indeed, spreading to two fingers on my left hand, but rather than cry over that (we now cry for an hour when the lights go out at day's end), I am forcing that hand to do extra duties.  I suppose someone without CRPS would call the doctor.  I have been taught not to, trained better than a seal.  Oh, how to stave off the urge to balance a beach ball on my nose?

I am daring to see another Kaiser Permanente neurologist next Thursday.  Yesterday, if you had dared to ask, I'd have told you it was a hoop to be leaped through, or thrown through (by the neurologist, or Fred, perhaps... maybe even Lumpy, if he could work up the strength).  Today, I've decided to focus on researching these sudden and completely un-freaking-expected changes in my upper extremities.  Research as only I can.  I have awesome research powers, friends, and they, coupled with unerring insight, rarely lose me in a corn field.

Don't know where that came from, that whole "lose me in a corn field" thing, but I like it. So it stays.

So next Thursday, yes, we slough off the history of Kaiser Permanente's abysmal neurology department (though I hear that EAST of the Lone Alp, they have better staffing) and we politely make the focus saving my hand function.  The OT kept concentrating on the pain of it, not hearing my oft-repeated: "I can handle the pain... what I cannot handle is losing the use of my hands."

It's easier to focus on the amorphous and try to score points for ass-kissing empathy, sympathy, compassion rather than brainstorm with me how I am going to toilet myself, wash, and manipulate forks, knives, knobs, buttons, cats, Fred, paperwork, pens, computers, car doors, seat belts, coffee cups, telephones, and pills, pills, pills!

Much better to wheedle: "It must hurt a lot.  Does it hurt a lot?"

Button my shirt, bitch!
Dice the Holy Trinity of onion, bell pepper, and celery.  Or the required base to a magnificent, fragrant stir fry:  ginger, garlic, and several optional thirds -- onion, chilies... none of that to be confused with the saucing options.  Don't get excited, Therapist, about a perceived ease to the saucing, because the saucing involves mixing, and the opening of many tiny bottles, and the outpouring -- precise outpouring -- of fish sauce and sesame oil and the many variants of soy and chili and sweet/sour viscous liquids.
I had trouble washing my face last night and dropped my toothbrush in the toilet.

But that was last night, and the OT was Tuesday, and won't be seen again until a few hours after the neurologist next week!

I've a firm grip on this day, still.

Part of that vise-like hold has been enabled by merely turning off all the phones and watching a few episodes of what I call a soap opera, but Fred insists is a "drama series." Yay for solutions, because they're solutions!

Clearly, giving my brain, such as it is, and these hands, such as they are, access to a keyboard has not been conducive to what pop stars like Dr. Phil might call "self talk." Dr. Phil is a marketing genius and a professional fraud.  I know the difference between what I type and what I actually feel.


Time to finish my chores, turn the phones back on, be an encouragement to Fred and the hulking, skulking cats.  The genetically indentured Domestic Staff Executive Committee has requested a meeting with the Haddock Labor Relations Board, and judging by the steely glint in a few eyes, there are more issues than territorial disputes and genetic engineering snafus on the table. I think, I am guessing, I assume... that they want a bump in salary, an expansion of benefits, and some minimization of their essential serfdom.

I could be wrong.

Last night, when I turned off the lamp beside this godawful hospital bed, after I threw the stupid washcloth gripped by my right claw all of three feet (after a full wind-up and high kick), before I picked the 90-minute "sleep" music option (which started with dear Simone's "Go to Hell"), I spent an hour crying.  I didn't time it, the hour is a guess.

All I could see was Lumpy's sweet face, his eyes gone deeper than deep seems possible, and dark, much darker than seems fair.  I don't see the two lumps he says are there -- in his skull, one on the left hairline and the other at the base of his jaw.  Granted the jaw is disfigured and I can actually see it, but I like to pretend that I don't, and that his well-trimmed beard just has an inexplicable scruffy area.

To me, he is beautiful, handsome.  And, damn it, other worldly.

Can I convince you, you who are as mortal as he is, that he does not deserve death, that the world needs him, that nothing will ever be the same when he dies?  That a whole generation of mediocre writers will not have the touchstone of his classroom f-bombs and hilarious illustrations of rhetorical fallacies by the citation of the authority of South Park and The Simpsons?  They won't learn the crucial life lesson, the crucible of working life, that he models when explaining, over and over: "I grade what you put in front of me."

You haven't seen him mime gold medal winning Olympic ski jumpers.  He's a little over 6' 4" and could launch himself off the icy ramp, and extend his upper body, straight as a rail, over his legs until his slightly Roman nose seemed (and therefore, was) mere inches from his skis.

A Normal Hill specialist, his split leg landings, with arms making delicate ballast adjustments, would be the envy of any world class orchestral conductor.  The arms part, not the leg part. Unless we're talking some sort of weirdly energetic orchestra conductor, or perhaps an afflicted one, suffering from neurological tics, Parkinson's, or Tourette Syndrome aggravated by the brass section, probably the tenor trombones.

So tears turned into giggles in the dark.  And each cat came by, politely following their peculiar rules of Buddy first, Marmy second, and -- everpresent, very somber -- little Dobby.  Dobby never leaves me when I cry, though he may position himself so as to be unseen.  On the top edge of the pillow, perched on the corner of the bedside table, alertly upright between my feet.  He didn't learn the "don't stare" lesson in kittenhood, so he stares, and mewls softly.

Like I said, the hour was just a guess.  I also visited with some other beloveds, before relaxing my mind into the recurring memory of me, seated on Lumpy's shoulders as he walked, slowly, from the shallow end of our swimming pool to the deep end.  Yes, that put him under water for about a third of the journey, but never did he hasten the pace, break the rhythm.  Sometimes the tipsy Happy Hour boozers at poolside noticed, sometimes they did not, but it was something to behold.

Well, I just promised Fred, The Castafiore, Sven and his son, Cabana Boy, a healthy dinner of roasted organic vegetables and some sort of fish.

A chance to wield knives and cavort with a very hot oven!  Now, THAT is what I call Occupational Therapy. No co-pay and a delicious pay off at the task's end.

Readers?  Love the ones you're with, and find ways to transmit, send, convey, and give away the love you have for those not within your wily grasp.  It's important, so do it.

© 2013 L. Ryan

Wednesday, October 8, 2014

The Me They're Expecting

More CRPS hilarity.

I had my "evaluate and treat" first appointment with outpatient Occupational Therapy yesterday. Why?

Darling Readers, you really must follow along.  This blog is nothing if not one long complaint, studded with humorous illustrative anecdotes, spiced and spruced by the esoteric contributions of life in Marlinspike Hall, ancestral home of the Haddock family, and all situated in the Tête de Hergé (primarily the region west of the Lone Alp).

I've been dumped into the outpatient therapy division of Kaiser Permanente's HMO because about a week before my foot and leg decided to develop cellulitis, I woke one morning to find my right hand had turned into a claw.

Not to bore the More Dedicated Readers, here's the situation, upper-body-wise.  My left hand is functional but weak.  Mostly it is a great hand, friendly, compliant. However, the left arm ascends into sartrean nothingness, as I lack a shoulder joint on that side.  This limits the range of motion, and definitely any comfortable range of motion, in the arm, and the reach of the hand. Try washing the right side of your body with a left hand that won't reach your right arm.  It's hilarious.  It can function well within the confines of its reach, and can and does go beyond, usually incurring plenty of pain as a result, but immense satisfaction should my desired action succeed.

What comes to mind is the most recent valiant performance of that left side -- tossing what turned out to be a horribly excessive amount of kosher salt into a delicate one-pot wonder.

Ah, I stray.

The right shoulder is a prosthetic but only minimally painful, due to the ministrations of the most wonderful orthopedic surgeon on Earth.  I tend to forget the elbow reconstruction of some six or seven years ago -- also an excellent job, though the hardware is beginning to shift.

Shifting hardware.  Now that's a sensation.

I've had radial and ulnar palsies in that right hand in the past, and each time they just went away, like in a fairy tale.

The current claw has only gotten worse.

And was of minimal concern to every doctor, nurse, and housekeeping staffer I encountered, until a very sweet and knowledgeable OT made me a very personal splint while in the hospital.  She pegged it as CRPS, completely neurological, and one of those things that "just happens" with CRPS.

You go to bed with a functional hand and wake with a claw.

So the only advice was "wear the splint 2 hours on, 2 hours off, and sleep with a rolled up washcloth in the vise grip of your lobster-like appendage." Oh, and go see an outpatient OT.

The news yesterday was the same.

After I mentioned that my goal was a return to normal function, and to not hear that nasty phrase: "This is your new normal."

Five minutes into the evaluation, my goals were reiterated by the therapist, in spades, leading with: "It looks like this is your new normal.  Our goal is to keep it from getting worse..."

It went on and on.  She knew her stuff but was into reinventing the wheel, which would be fine, were that of benefit to me.  Lots of manipulation of both hands via various tests.

With the result that my pinky and ring finger on the LEFT hand are now curling, curling inward and responding with snarling and snarky pain when I insist that they function correctly.

Yesterday was Lumpy's birthday and so one call, made while he was out, consisted of me singing the requisite tune to his answering machine (yes, an answering machine), while the second call consisted of him pumping me for info about me.  The little I got from my dear brother was that he barely made it through Monday's classes, that the radiation has done nothing for his pain, and that he ended up buying the medication that his oncologist, pharmacist, nurses, and insurance helpmates could not manage to have correctly approved, filled, and paid for in over a month.

We shared a moment of tired awe.

He's brilliantly brave, struggling to make his voice vibrant long enough to get through the birthday calls.  No mention of my gift, so that was a bust.  I suck at gift-giving, so there's no harm, no foul.  I just wish that this year, of all years, I might have gotten it right.

I don't think I can lose him.

Totally different sort of despair than losing hands, losing a precious friend, mentor, sibling. He still needs to teach me how to snap my fingers correctly, and how to spit.  I want to play one more game of hide-and-seek, where I hide for hours, and emerge to find that he left for baseball practice hours ago. Malted milk balls galore, water polo for hours, musicology 101, and half-court tennis matches. Agreement that there will always be a need and a coziness in literary history, no matter the lit crit trends.

Figuring the day had not slashed at me quite enough, I made other calls -- the call to Lumpy having been desired, just unexpectedly... hard.  I checked in with the Sister-Unit, who was, of course, in a bookstore.  The conversation acquired that whispering-in-a-library quality and bored her, apparently, as I got a sudden "gotta go, hang in there, and stay tuned!"

It could be that she was busy.  Maybe she found an interesting book, or met up with a beloved fellow bookworm. Her birthday is day after tomorrow.

She and Lumpy are step-siblings, born three days apart.  My brother was born in London, my stepsister in North Carolina.  Occasionally, my stepmom and those two would mess with school registrars' minds.

"Twins?" they would hesitantly suggest.

Stepmom would lay out the geographies of their births, as her son and daughter, clearly fraternal as heck if twins, stood looking twinly.  Then she'd deliver the coup de grâce:

"Longest three days of my life."

Anyway.  Sister-Unit relayed that stepmom had fallen, but was okay, and that her momentous day -- a move into Assisted Living -- was penciled in for next Thursday. Stepmom, all 85 pounds of her, has turned into a striking viper at the mention of it.  The gift of short term memory loss at least shortens the period of hissing and tongue-flicking, but no one envies Sister-Unit and her Studly Partner their task next week.

It is sad, but the heart hardens over what must be.
Or mine has.
What a terrible admission.

Lastly, I called the BioMom Unit. Everything in me wanted to scream at her that her son was being laid low by vicious cancer and that I resented being born, but instead we talked, at length and with considerable comedy, about how her dead husband is cheating on her -- but only with pregnant women.  He was an Ob/Gyn. She was a hoot.

Usually, I try to gently reorient her.

Not yesterday.  Within her concocted world, she made perfect sense.  So I reminded her how much her husband loved her, and she rested easily in that.

I cannot slough off more work on Fred, with the feeble excuse of having no hands.  This cannot be my "new normal."

I've been thinking of dear Lumpy all day -- office hours, two classes, radiation, and an infusion of chemotherapy.

Convinced that my new normal reeks of my continued uselessness.

Time for the splint!  Time to check on The Fredster. Time to extract the "poor me" from other sentient beings' beings. If they ever do want or need me, this is not the me they're expecting.

as it was in the beginning... now the thumb is a quivering
quibbling digit.  all praise the mighty index finger!

© 2013 L. Ryan

Leave it in odd places

Print it.

Gift it or leave it in odd places:  train, bus, and airport terminals; tucked inside holiday greeting cards; between cans of diced tomato at your favorite grocery; mixed in with deposit slips at the brick-and-mortar bank; sell it as a raffle ticket; slip past the Secret Service and place it in the center of the presidential podium.

Give it to nurses, patient care technicians, doctors, dentists, physician assistants, occupational and physical therapists, medical office managers, receptionists (both friendly and reptilian), and insurance reps.

I laminated a few for our traffic-stopping crack whore to hand out as Public Service Announcements. She's nothing if not civic minded.

[Recently, Fred thought she'd been injured, as she was doing a crotch-clutch as if she were in pain. She was still resolutely completing her complex routine of concentric circles, but with only one hand a-wavin' in the air. Things were looking lopsided.

Sweet Fred: "Can I call 911 for you? Do you need help?"

Young woman's vibrant response:  "No, s'okay. I'm a crack whore."

Fred, kinda speechless: "Uh. Okay! Give a holler if you change your mind."

Me, to Fred:  "'Give a holler if you change your mind...' -- Really? Oy." ]

Anyway.  This CRPS IASP blurb of a short-cut may soon be out of date, but it's the best thing I've seen in a long while, precise enough to pierce the filmy, bored eyes of the code-obsessed, mentally billing Kaiser Permanente hospitalist who is pretending to listen to your medical history.

Which reminds me.

I've been in and out of so many medical facilities since mid-August that the experiences blur. But there are moments that won't go away.  Like the encounter with an Emergency Department Physician's Assistant at Northside Hospital.

Their goal and need is to get patients to focus on what, specifically, brought them to the ER/ED that day.  

I was there because the infection in my foot and leg was out of control.  Easy enough.

But incredibly complicated, because -- while *I* am focused, the health care professional is usually a CRPS virgin -- the PA is sidetracked by the bruising, welts, swelling, discoloration, and temperature of my arms and legs.  They actually think this is something that maybe I overlooked, forgot to mention, or, being as dumb as a rock, have confused with this ridiculous story about cellulitis and infection.

She grabs my legs, pokes my feet, engenders my wrath and raises my pain level for hours.  No longer listening to me, she says aloud, "This is not normal... The foot is cold, there's no infection... Why is this so painful?" All the while, I am repeating:

"I have CRPS in all four limbs.  You may know it as RSD, which is outdated and scientifically flawed, both as a name and a concept, but hey -- who cares, so long as you stop rubbing your gloved hands up and down my incredibly goddamned painful limbs, you stupid cow." 

She pretends to listen, says "uh-huh, uh-huh," and then says, "What's wrong with your arms, what is wrong with your right hand?" I give an alternate version of the CRPS speech.

"Uh-huh.  Uh-huh.  CRPS, in all limbs.  Got it." 

While continuing to poke and press into swollen tissues and asking how and why they are so discolored and how long has the blood supply to my legs been compromised?  ("Because that's the nature of CRPS and the blood flow is actually very good.")


I'm plastered to the ceiling, my legs and arms in spasm after this cow-handling.  Fred must have sensed impending verbal warfare and shoots me a look, a don't-do-it look.

As she is washing her hands, her back to us, I reiterate that distinctions must be made between the reason I am there -- cellulitis and needed intravenous antibuotics -- and the underlying constant of CRPS, which can confuse the picture.  I confess that the pain has me beat and request pain meds. This is a rarity, for me to ask for pain meds in any ER/ED. But it was... rough, and now intolerable, thanks to another vicious HMO exam.

Out it came.

"Do you know what CRPS is?" I asked, in an aggressive, angry tone -- meaning quietly, slowly.


NOPE.  The casual arrogance of a NOPE?  Really?  I mean, really?

"Do you want to tell me what it is?" 

"Nope.  Go look it up, educate yourself.  Which is what you should have done before you set foot in here.  The exam you just did?  It was pointless, since you were uninformed about the underlying chronic condition before you.  Had you known what CRPS is, your exam might have yielded useful information.  As it is, you've succeeded in sending me into a pain spiral while you get to waltz out of this cubicle and plug into some outdated summary article about RSD..." 

"I was not TRYING to hurt you, Madame Retired Educator. We are here to HELP you.  There is no need to be rude to me." 

Then I got it from Fred.

But I ask you -- when is enough, enough?  How many times, when I am sick, even very sick, do I have to face these lying medicos who feign knowledge and who do HURT me?  I so love the person who says, "I'm not familiar with CRPS, though I've heard of RSD. What do I need to know?" It's a sign of intelligence, and defuses my anxiety on the spot.  There was one drop dead gorgeous ER physician (and I cannot recall what he looked like, as his looks were not what was so darned good-looking) who said something close to that, while purposefully crossing his arms across his chest in the universal stance that reassures: "I am not going to touch you without your permission,"

Fred, learning that I was to be admitted, departed for Marlinspike Hall and Manor duties that never end.  He was still emitting that parental I'm-so-disappointed-in-you vibe, so his departure was fine with me.

When next I saw the Northside Hospital ER/ED PA, she announced that she was arranging my fast track admission "upstairs," and that they would start the antibiotics before I even left her department.

I apologized for having been rude.

She said, "Well, I am glad you apologized.  I know that you don't feel well and we don't always behave our best when we're hurting." 

I could have knocked her into next week.

What I needed was our beloved crack whore, whirling and twirling, one hand holding her crotch, the other offering the obsequious PA a laminated version of the IASP diagnostic criteria for CRPS.

So here you go... Print it out... Spread the word... Do good, not evil... and never, ever be "rude." 

And yes, I meant my apology but also adhere to the wisdom of Mary Chapin Carpenter:
"Forgiveness doesn't come with a debt." 

For the best understanding, I'd love to hand over the document below to the medico about to commit neurological rape, but I can attest to stunted attention spans.  No one reimburses for reading time.
But perhaps you could print out a few copies on a nice sandpaper... and leave them there where 
toilet tissue may run into short supply,