Keep the Faith

Every time I encounter a good blog entry about CRPS/RSD, I try to link to it -- and offer a huge "thank you" to the author, because such things are few and far between. This morning, my Medworm subscription hit upon the following:

http://rlbatesmd.blogspot.com/2008/09/complex-regional-pain-syndrome.html --

over at Suture for a Living. The intro to this blog sketches the broad lines of this blogger's interests:

I am a plastic surgeon in Little Rock, AR. I may "suture for a living", but I "live to sew". When I can, I sew. These days most of my sewing is piecing quilts. I love the patterns and interplay of the fabric color. I would like to explore writing about medical/surgical topics as well as sewing/quilting topics. I will do my best to make sure both are represented accurately as I share with both colleagues and the general public.

Such a desire, such an approach, is appealing to me, especially, as most of my professional "specialty" deals/dealt with the interplay between the plastic and the written arts, and my interest peaks whenever I encounter a unifying vision of plural modes of representation.

Lord, how easy it is to lapse into Ivory Tower Speak (yet another of my foreign languages).

So, this morning I am grateful to the incredible technology that scans the world of electronic communications for things that are of interest to me, and possibly to me, alone. I am grateful for the chance to connect, however artificially, with someone of a completely different ilk who nonetheless has transected the thread of my thoughts... I don't get excited anymore about the likelihood of effecting any real progress in the diagnosis and treatment of CRPS/RSD through internet "publicity" -- I am too jaded, too much in pain, too depressed, too disabled.

I hate that word -- disabled.

Yesterday, after coming home from the weekly Infectious Disease appointment (the PICC line comes out next week! Hooray!), I was in bad shape. Riding in the car is difficult, and my pain level was hovering around 8 (grrrr -- what a useless thing, the pain scale). However, I had made noises the evening before about my firm conviction to clean the house a bit, and so, after finishing the first two infusions of the day, I gathered my weapons of war and began vacuuming.

Okay... I am used to Wheelchair Vacuuming, an Olympic endeavor, an Olympic sport. But now it is complicated by a useless right arm and a *&^%#@ hurting left shoulder. The nurse in the ID office had set off a flare of pain in my left hand because she had been unable to get any blood through the PICC line and had been forced to stick me several times in that hand. Not her fault, just an unfortunate thing when there are needle sticks in an area already involved with CRPS.

Given the circumstances, I chose to use the Power Chair Push-me-Pull-you technique -- basically accomplishing the task by combining the thrusts of the vacuum with the thrusts of my ruby-red chariot.

And somewhere between sucking up the huge pile of carpet cleaner that I had placed over Sammy's last deposit (please see: Potpourri -- Olla Podrida) and the gymnastics of getting into the nooks and crannies of the dining room, I went mental.

Poor Fred. When I go mental, I strive to share the warm and fuzzy experience with my beloved. Poor Fred.

Suddenly I was rolling myself in circles around the living room, sounding off about the state of the puked-upon carpet, about the total invasion of the cat creatures. (Of course, this problem only exists in one tiny part of Marlinspike Hall in the Tête de Hergé -- the rest of this opulent manor is spotless and petless, crucial since we house several museum quality painting and sculpture exhibits, as well as an extensive decorative art collection of baroque furniture -- mostly cabinets, commodes, and French stools.) Fred stretched out on the nearest chaise longue, steeling himself against volley upon volley of invective.

Let's just say this: Promises were made; Christmas gifts were agreed upon. And yes, the removal of carpet and the refinishing of the medieval stone and early 20th century wood floors were part of the negotiations. So it goes when I get mental.

I worked on for several hours, and ended up needing help getting into bed -- always a depressing thing, not to be able to do even that. Plus, I left some of the cleaning undone.

Anyway, my hope was that a bit of rest would conquer the pain and difficulty moving, so that I could redeem myself by being a fun partner for the remainder of the day. Instead, Fred ended up having to nuke a frozen dinner for me (losing points), cut up the pale but purportedly "blackened" slab of purported chicken (winning back what he had lost), and take on the feline's evening meal, as well. Poor Fred. Yes, it is a refrain, and one you may as well learn.

When my acronyms are under control -- from the SLE to the AVN, passing by the AI, and back to the CRPS/RSD -- I defy the meaning and intent of the label disabled. Doing anything without assistance and in my own time is wondrous. That life has been unavailable to me since late last year. Everytime I try to pretend this is not so? I pay, and everyone who loves me pays.

So sometimes the best I can do is celebrate the stray blog that -- in the best of all possible worlds -- might make a difference. Thank goodness for this quilting, sewing, needle-wielding plastic surgeon who decided to disseminate some information about one of the more obscure neurological disorders in existence! Somewhere there is a woman who will be able to joyously and painlessly vacuum her living room, who will pirouette as she cleans the toilet, who will dash from one satisfying professional experience to another, from one colloquium in the Rainbow-Ribboned Multicultural Center to the next in Stuffy Whosits Library.

I just gotta keep the faith.

Ar!