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 This CRPS IASP blurb of a short-cut may soon be out of date, but it's the best thing I've seen in a long while, precise enough to pierce the filmy, bored eyes of the code-obsessed, mentally billing Kaiser Permanente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.")
"Uh-huh."
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."
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,
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