What's After Awareness?

"On a scale of 1-to-10, my pain was a 15”: No offense, but if people with CRPS don't stop saying crap like this, I am going to assist them in the discovery a new World of Hurt.

It's the declaration of Akron, Ohio native Bob Harris, and I know he means it. I even understand what he is trying to say. But in a highly unUSAmerican move, I do not support his right to say it, much less wish to defend said right with anything remotely similar to my life (such as it is).

See? My cute and sardonic little parenthetical remark is infinitely more expressive of the devastation caused by CRPS / RSD pain than Bob's tired quip. Keep an eye out, I'll probably pull some other extraordinary rhetorical device out of my bag of tricks before this blog post ends.

Harris has been an integral part of the effort in Ohio to pass a bill promoting education and awareness about CRPS / RSD. Sponsored by Senator Eric H. Kearney, Ohio SB 40 was introduced in the legislature in February 2011 and a hearing on the bill was held last Wednesday.

Before you know it, November will be famous as Complex Regional Pain Syndrome Awareness Month in the Buckeye State. There will be festivals, official foods, corporate sponsors, and ribbons, lots and lots of ribbons. Having been through the beginnings of this sort of thing many times here at Marlinspike Hall in Tête de Hergé, may we suggest the following as great ways to start this worthy campaign -- without Bob hemorrhaging from the expense. (In Ohio, People-With-Diseases who spearhead awareness legislation are required to pay all promotional awareness costs for the first year of enactment.)

As a baby festival, but one that will knock your soft, thick, woolly socks off, nothing beats a CRPS Cotillion. Ohioans love a good "patterned social dance" and why not exploit pre-existing manias that also emphasize decorum and aerobic exercise? And proč ne? Why not team up with a group like Sokol Greater Cleveland, which sponsors an annual cotillion to showcase debutantes of Czech and Slovak descent from northeastern Ohio? They've presented over 200 debutantes at their Cotillion Balls -- every Spring since 1972! -- until there was an unexpected dearth (much like the disappearance of the bees. See Colony Collapse Disorder [CCD]) in Czech and Slovak heritaged young women in 2010. Bob can raise awareness in the underserved Czech - Slovak CRPS community and help them move their young ladies at the same time.

NOTE to Bob: You may need to post prominent notices attesting to the Separation of Church and Cotillion, else future CRPS Cotillions may not receive their due in terms of federal and state funding. While no one has anything against Evangelical Christian Cotillions, imagine the modesty issues and gender inequities in, say, a Muslim Cotillion, or the refusal of Jewish Hora dancers to form a square. The CRPSers in Utah have been unable to enjoy Cotillion as a means of raising disease awareness and research funds due to the well-known gush by Prophet Joseph in his journal entry of January 23, 1844: "There was a cotillion party in the evening at the Nauvoo Mansion. The night was clear and cold."

In Cleveland, there is such religious fervor over the quadrille, that we suggest a good-natured embargo of such events in that urban center.

During the past year, debutantes and ambassadors, representing Holy Trinity and other churches in the Cleveland Metropolitan area, were required to attend two-hour weekly sessions where the primary focus was Bible study and spiritual awareness and development. Participants also attended etiquette classes and countless cotillion rehearsals.... In 1982, Holy Trinity became the first church in the city of Cleveland to present a cotillion where both young ladies and gentlemen prepared themselves to be brides and grooms of Christ. As in the past, the highlight of the cotillion was the Bow of Grace and Humility and the Walk of Faith Promenade which was beautifully staged by Actor/Choreographer Michael Burns.

Anyway, yeah, give the CRPS Cotillion a try, and don't forget to use the Cash Bar as a fundraiser -- another reason to push the secular angle. People get good and thirsty after just a few minutes of complicated dancing.

Official Foods: Here in Tête de Hergé, we have a tradition of spelling things out with our novelty food items, but have noted that "CRPS" can sometimes create some furrowed brows among our monogram munchers. And Bob, since it is important to marry a region with its food preferences, at least in the beginning of food-based disease-awareness campaigns, you'll want to do some careful research with the assistance of your best Foodie friends.

I've learned a few things that might help. Tomato juice is the official state beverage. (I love that!) Lycopene, bay-bee! Vitamin A! Chromium! Maybe plan an event in Troy, Ohio's Strawberry Capital. "Only blackberries and walnuts scored higher in total antioxidant capacity"!

The strawberry is also one of the wonder foods included in the anti-inflammatory diet, and if I am about anything, I am about anti-inflammation. What is your C-reactive protein (CRP) level? Hmm? The great thing about the anti-inflammatory diet is that I happen to love the menu, its freshness, and even if my CRP doesn't budge, I know I'm doing good things for myself as I chow down.

Officially, though, I think the only detail proven beneficial (through studies on the Mediterranean Diet) is the strongly suggested increase in omega-3 fatty acids, as they decrease levels of cytokines. So chill with the omega-6 prepared food junk, and invest in cold-water fish, canola oil and flax, or supplements. !

Having read the text of the Ohio CRPS Awareness Bill, I am really impressed by its up-to-date nature, and that's why I am pretty sure you'll have a winning proposition, Bob, if you focus your food efforts on some aspect of inflammation. It'll be the single most expensive outlay during your year of personal financial support of the CRPS Awareness provisions. Are you a farmer, Bob?

For corporate sponsorship suggestions, we always look to RSDSA for guidance. The organization does not accept advertising on its website but does recognize its corporate friends, such as Cephalon, Endo Pharmaceuticals, Purdue,  Medtronic, and TREND (part of EMGO).

As for ribbons, Bob, they are the bane of my CRPS Awareness existence. Back in the heyday of the AIDS red ribbon, I sported, instead, a small lovely button that read: Fuck the Red Ribbons. Find a Cure. My attitude is remarkably similar in this instance.

Anyway, I *think* that CRPS is officially some sort of orange. Because, I *think*, of all the burning pain, and the association with flame -- so it's gotta be in the orange, red, hot category.

If THIS website is to be believed, then, yes, CRPS is represented by the orange ribbon, which also serves "Self Injury, Leukemia, Multiple Sclerosis (MS), Hunger, and Addiction Recovery."

The latest thing on the scene? Silicone awareness bracelets. Maybe you can slip in a better color, and move CRPS fashion up the A-List, hmm?

One of the articles I read that featured Bob Harris stated bluntly that "[h]is life has devolved into a living hell." How I hate to read that; How I understand that. What brought me so low, so pitiable, the other day (though maybe you did not notice my regression?) was that exact realization. I ceased moving forward years ago, ceased digging in my heels not long after that, as resisting the steady, unceasing pull of the ebbing tide only exhausts and demoralizes.

Instead, I make counter-offers to the universe.

"Okay, Universe, I'll cede You this half-inch of skin, bone, muscle, nerve, and vascular bundles here on my left forearm, plus that whole new section of my scalp. In return, though, You Vicious Bitch, I am going to demand an excellent recipe for eggplant that doesn't reduce itself to an oily mashy mess AND two hours uninterrupted sleep -- a *renewable* proviso. Ha!"

Bob has done something slightly more laudable than my carefully-prosecuted War of the Deal by relentlessly pushing for change through public avenues. This is one of the best "CRPS Awareness" bills I've read. It's better than most just by virtue of not pushing either the misnomer "RSD/Reflex Sympathetic Dystrophy" or the bad explanations attached to that misnomer. It is distressing to still read the old, tired [WRONG] explanations for how CRPS works -- insofar as we know, of course -- because this reflects the status quo within the medical community. Yes, it is a little bit of trouble and it takes a little bit of time to delve into the real disease mechanisms rather than repeating easy inaccuracies about "the sympathetic nervous system run amok," but that's a level of awareness we ought to be able to assume with health care professionals!

So a great big congratulations to Bob on his good work, with hope that an approving vote happens soon. It's a shame he has to foot the bill for that initial year of societal education about the disorder. Someone should pass a law...

Oh, and puh-leeze, Bob -- a pain score of 15 on a 1-to-10 scale makes no sense.  It just doesn't.

Fond regards,

The Gang at Marlinspike Hall





Here is the text of Ohio SB 40:

A BILL
To enact sections 5.2267 and 3701.137 of the Revised Code to designate November as "Complex Regional Pain Syndrome Awareness Month" and to require the Department of Health to include on its web site information regarding the syndrome.


BE IT ENACTED BY THE GENERAL ASSEMBLY OF THE STATE OF OHIO:
Section 1. That sections 5.2267 and 3701.137 of the Revised Code be enacted to read as follows:
Sec. 5.2267. The month of November is designated as "Complex Regional Pain Syndrome Awareness Month" to promote public awareness of complex regional pain syndrome, also known as reflex sympathetic dystrophy syndrome.
Sec. 3701.137. (A) As used in this section, "complex regional pain syndrome" or "CRPS," also known as reflex sympathetic dystrophy syndrome, means a debilitating and progressively chronic syndrome characterized by severe burning pain, pathological changes in bone and skin, excessive sweating, tissue swelling, and extreme sensitivity to touch.
(B) The department of health shall include information on its internet web site to promote complex regional pain syndrome education in a manner that enables individuals to make informed decisions about their health. The information on the web site shall include all of the following:
(1) Emerging research regarding the pathophysiology of CRPS;
(2) The risk factors that contribute to the manifestation of CRPS;
(3) Available treatment options, including the risks and benefits of those options;
(4) Information on environmental safety and injury prevention;
(5) Information on rest and the use of appropriate body mechanics;
(6) Information on the availability of diagnostic, treatment, and outreach services for CRPS;
(7) Information concerning any other factors or elements that might mitigate the effects of CRPS.
(C) The department shall notify boards of health, hospitals, clinics, and other health care providers about the availability of information concerning CRPS on the department's web site.
Section 2. Section 3701.137 of the Revised Code, as enacted by this act, shall take effect ninety days after the effective date of this act.
Section 3. (A) As used in this section, "complex regional pain syndrome" or "CRPS" has the same meaning as in section 3701.137 of the Revised Code.
(B) The General Assembly finds and declares all of the following with respect to complex regional pain syndrome:
(1) CRPS occurs in five per cent of all cases of nerve injuries.
(2) CRPS is thought to be a neuropathic pain syndrome that generally occurs at the site of a minor or major trauma injury, but may also occur without an apparent injury.
(3) While the cause of CRPS is unknown, both the peripheral and central nervous systems are involved.
(4) The syndrome is unique in that it simultaneously affects the nerves, skin, muscles, blood vessels, and bones, and if untreated, can result in permanent disability and chronic pain.
(5) CRPS is often misdiagnosed because the syndrome is either unknown or poorly understood. The prognosis for patients suffering from CRPS is generally much better when CRPS is identified and treated as early as possible.
(6) If treatment is delayed, CRPS can quickly spread to an entire limb and changes in bone and muscle may become irreversible, resulting in limited mobility, atrophy of the muscles, and eventual permanent disability.
(7) Since a delay in the diagnosis or treatment of CRPS can result in severe physical and physiological problems, and early recognition and prompt treatment of CRPS provides the greatest opportunity for recovery, it is in the best interest of the public to require the Department of Health to include information on its internet web site pursuant to section 3701.137 of the Revised Code to educate both individuals and medical professionals regarding this debilitative condition.
Section 4. This act shall be known and may be cited as the "Complex Regional Pain Syndrome Education Act."




State Fiscal Highlights
The bill requires the Ohio Department of Health (ODH) to post information on its
web site to promote complex regional pain syndrome education. The bill specifies
what the information is to include and requires ODH to notify boards of health,
hospitals, clinics, etc. about the availability of this information. Costs would likely
be incurred for the review of these educational materials, the posting of the
materials, and notification to the entities previously described. ODH estimates the
cost to be between $500 to over $1,000 in the first year. In subsequent years, there
could be negligible costs related to updates to the materials and web site.