Monday, December 31, 2012

To the CRPS Community -- Ramping Up the Petitions

The "We the People" Petition Movement created by Djinni at the White House -- something akin to second string elves at the North Pole -- struck me, a former teacher, as brilliant Busy Work.

And then, during a few hours of intense pain following the obligatory "it's-almost-2013" house-cleaning onslaught, I found myself wanting to write an end-of-the-year letter to my buddy, my friend, my president, Barack Obama.  I landed on the "We the People" Petition Movement page, and having essentially no attention span, stared at it for a bit.  "How does it work?" wondered some part of my brain.

All right, yes, I was itching to start a petition.  It did not matter about what, I just wanted to be a petition author.  Go out in a blaze of importance.  "Profderien, her?" -- people will say -- "Didn't she write that comprehensive, reader-friendly, and yet incredibly stuck-up final petition of 2012?  The world is going to miss people like her."

Yes, but...

Damn the "[y]es, but"s of this world!

There is a very neat little box-like box on the webpage that says:
Creating a duplicate or similar petition will make it harder for you to get an official response. Instead, sign and help promote the one that has already been created.

They, the White House Djinni, call it "a helpful hint," the bastards.

But what do you do when you finally focus enough to figure out what you'd be willing to fight for, and do a search of extant petitions, only to find one, and only one, and to find it... insufficient?

The CRPS community (and again, one day I'll do the long-promised post on illness "communities," but for now please allow BLECK to suffice as commentary)...

Ahem.  Do-over!

The CRPS community is not all that large, not at all cohesive, and like any group, not nearly as homogeneous as petition-writers, petition-signers, pollsters, and politicians love to assume.

This, in short, is the only active CRPS petition in the queue at the "We the People" website -- that I was able to find.  There may be others, perhaps grouped with other "pain" issues or [financially] orphaned diseases:

WE PETITION THE OBAMA ADMINISTRATION TO:Teach Reflex Sympathetic Dystrophy in all Medical Schooling
Reflex Sympathetic Dystrophy is a nerve disease that effects millions of people in the USA . This disease is legally diagnosed & accepted by the Social Security Administration .We need a bill passed to teach RSD/CPRS in our Medical Schools & Facilities . Common mistakes to prevent ,Early detection , less suffering , Pain & financial loss , for the individual & the financial status of the Goverment. Please make this awareness as the patient amount sores in numbers . Thank You, Author Deeann Elizabeth Pavlick
Created: Dec 20, 2012

It lacks roughly 23,900 signatures to meet the threshold date of January 19, 2013 and hopefully won't make it.  I signed it.  I felt browbeat by the little admonition against creating dueling petitions.
I felt that I owed it to Deeann Elizabeth Pavlick, the author.

But my fingers are itching to begin drafting a new petition dealing with CRPS.  It would not contain "RSD" within its body except to attempt a one or two line explanation of why that term needs to be done away with, especially if we are talking about medical school education.  And may God let that shift in scientific thought trickle up, down, and all around, and mostly into the brains of CRPS patients.

CRPS patients need to stop making it about "oh, how we suffer." We need to stop fighting the puppet shadows on the wall because Jose Ochoa and his minions have to all die off, eventually, and fighting them simply gives their backward self-serving pseudo-science another hearing.  The legitimacy of CRPS as an illness, and perhaps as one pain syndrome among many related to neuroinflammatory processes, is no longer at issue.

Treatment algorithms based on up-to-date research, coming from what looks to me now like a three-pronged group of excellent medical advocates, need to be promoted -- and their promotion needs to REPLACE all of the "awareness" nonsense that we, The Freaking Community, have been caught up in.

Do you know what brings awareness?  Not celebrities fighting the same disorder.  Not one more doctor able to stutter out a correct depaction of CRPS or, God forbid, RSD.  Not ribbons, not slogans, not obliteration of the pain scale (nor endless citation of the McGill Pain Scale) -- nor any other sort of pain catastrophizing that the Community can promulgate.

Money.  A pipeline of profitability.  Big Pharma.  The possibility of a pill.  The possibility of an actual deep brain surgery, or the discovery of a CNS Reset Button just derrière the Belly Button that requires eight pre-op visits for Botox injections that must be administered by a plastic Cosmetic Surgeon certificated in Belly Button Resetting and Reconstruction Within the Context of Central Nervous System Dysfunction (BBRARWTCOCNSD).

That's what makes stuff worthy of the medical school syllabus.  Money.

I'm racking my brain to make this work across the disciplines.  I may have to consult my Brother-Units:  the one, Grader Boob, who breaks into a rash at the very word syllabus, and who knows that whoever wrote the primary text for the course in question controls the syllabus;  the other, TW, who knows more about the Truth of Stuff and what ought to be on the syllabus, but who maybe doesn't have the callus or scarring peculiar to academia that would lend his syllabus creds.  (I don't really know and should ask.)

Heh-heh.  I just accomplished one of my resolutions for 2013 -- to use "creds" and to use it so coolly and so hip-a-lushishly that it would just flow off my fingertips onto the keyboard and from there to my monitor, to ultimately land, lightly and naturally, on yours.  Just don't tell me that the Urban Dictionary is no longer hep, happening, fashionable, stylish, trendy!

1.creds32 up8 down
Credentials earned in life by experience. Credit given.
He talked about being in prison like it gave him creds.
by Willy Gee Jul 22, 2005 
2.creds2 up3 down
Money you pay to a prostitute for their sex. Advice: 10-20 up front, the rest after the fact.
Person 1: Dude, I just paid 100 cred for that girl!

Person 2: Waaaaaayyyyy an overpay man, she only is worth 55 creds at max.
street cred cred money dough creed
by Hamcracker Jun 2, 2011 
3.creds3 up8 down
Phone credit, i.e. money to make calls with.
Bob: "I'll get some creds, talk later"
Kyle: "See ya, balla"
credit cash credz phonemoney dredit
by triedit Dec 27, 2009 

Yeah, so I guess this post, despite its constitutionally-inspired beginnings, has steadily gone downhill.

Am I promising a new CRPS White House Petition once this one has died, or even once this one has achieved much success?  Yes, I am.  

I will hold myself to it.  It's either the carrot or the stick that will get me to January 19, 2013.  Believe it or not, I promise to bring to the effort consultation with others wiser than myself on the involved topics, to put aside snark and the unnecessary, and, mostly, to think first of the real CRPS community.

Your job, should you choose to accept it, is to come up with a sequential carrot or stick to draw things out to at least, say, mid-February.  Your job, too, to unpack the idiom as you see fit... for I had no idea it was such a point of contention.  (Yes, when I was a worker bee, words -- idioms, cognates, parts of speech -- were a big ol' part of my job.)

courtesy of NPR

No comments:

Post a Comment

The Haddock Corporation's newest dictate: Anonymous comments are no longer allowed. It is easy enough to register and just takes a moment. We look forward to hearing from you non-bots and non-spammers!