It's both an irritant and a sputtering baby flame of hope that one wishes to privately tend, teasing with tendrils of dried moss, carefully offered wafts of fresh but humid air, then cautiously covered with a high tech cake dome, perfected "air" mixture piped in from the Perfected "Air" Mixture canister standing by. We who tend are dressed, variously, in protective suiting: high density yellow paper cloaks with plastic self-ties, elbow length dress gloves, Michael-Jacksonian masks (with some adjustments to the nose clip) mixed with slight variants of that wondrous Guy Fawkes, Anonymous hacktivists, V for Vendetta and Occupists masks, now wonderfully ubiquitous, even in my world where soma meets psyche for afternoon sex. A little Marvin Gaye, some ripe figs.
What? You're lost, you say? Are you sure you should've revived this blog, profderien, O Retired Educator?
What fire are we nursing now with such ridiculous, ambiguous imagination -- and to mention hope so early on, have you finally lost your faculties?
There's a team of researchers, a joint sort of affair, kind of -- affiliated with the University of Liverpool’s Institute of Translational Medicine and the University of Pecs in Hungary -- that is bandying about the word "cure" and CRPS within the same sentence. I know, I just recently posted about it... but then a few neural sparks made me search mine own blog, using as search term the very odd "Liverpool."
And I remembered Dr. Andreas Goebel.
And I remembered this craze of optimism, this careful tending of a flame, and the eventual realization that Goebel's pony has but one trick.
And that the trick is tantalizing, infuriating. Tantalizingly infuriating?
The source of the piss on the baby fire? Common sense, common experiences. To say that CRPS is not a neurological disorder at all, and not (often) the result of trauma is to belie the experience of... well, almost everyone with CRPS, and almost every physician who has observed its onset and evolution.
The air up here in Hope Land is thin, and hallucination likely.
I'll spare myself the shame of reviewing every sarcastic post born of my anger at those pushing "cure" and "CRPS" within the same paragraph -- and here I'd temporarily lost my bearings over another Goebel article, another IVIG paean, another sweeping claim.
My return to sanity came from an effort to eat popcorn. You take the hand, you approach it to the bowl of puffed grain, you grasp one (my preference) and you bring it to your mouth. Except, as has been the case for a few days, my hand would not cooperate, despite the oxygen-deprived fish mouthing of my face, hungry for popcorn. It either would decline to pick up a piece of the lightly salted kernel, or would manage that feat, only to drop it three inches below my gaping maw.
My return to sanity was bolstered by the pain and trophic changes of a now dragging right foot, the gift of an ignorant neurologist who conducted an ignorant neurological exam, the very definition of trauma.
My return to sanity has most especially been paved by the searing path of pouring boiling water on my thighs three mornings in a row during that incredibly complicated process of making coffee.
And my return to earlier convictions cleared completely when I remembered that Dr. Goebel headed an earlier team which published a paper -- just in December 2012 -- that included a line that has haunted me, and driven me:
There are only few treatments, and there is no cure. The condition has continued to puzzle investigators. Bizarre aspects of its presentation have continued to emerge over the past 110 years, and although we now understand that CRPS is indeed associated with an initial local inflammatory response – without reported neutrophil invasion or overt tissue destruction [8] – the underlying cause has remained elusive. Over the course of the disease, initial limb signs generally mellow [9], however about 15% of patients continue to have unrelenting pain [5]; these patients' quality of life remains amongst the lowest reported in medical conditions [6].
Tonight, Fred and I cranked up the air conditioner and dined on a sensible green salad dressed with red balsamic vinegar, because we are out of white.
© 2013 L. Ryan
