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!

Potpourri -- Olla Podrida

Pot pourri (rotten pot). Fitting that the name for a beautifully arranged bowl yielding questionable scents derives from the Spanish designation for olla podrida -- pork&beans. True, the Spanish being Spanish, said pork&beans stew is subject to the rarefying whims of the creative cook, a clay pot, and a long cooking time, and becomes a satisfying culinary hodgepodge.

I learned from reading the entry for potpourri in Wikipedia that, "(w)hen mixed, you need to enclose the mixture in a bottle or jar, and let it sit for a few weeks. Towards the middle of the weeks, the soon to be potpourri may smell rotten. If you wait a little while longer, it will start to smell better, so don't get discouraged or disappointed." (I particularly relish, and appreciate, the encouragement to fend off the ravages of clinical depression.)

And so it goes that necrotic pots and gentrified stinkiness head up this blog entry -- the result of my search for an excuse that might unify my disjointed thoughts.

There is this notion in linguistics and lit crit -- about the process of voiding words, terms, implications, insinuations. It is recuperative, the voiding of terms, the emptying of cloying traditional meanings. (This is how, according to the insightful inhabitants of the Ivory Tower, the signifier nigger is being... reclaimed and rehabilitated. Isn't all this pseudo-intellectual crap grand?)


I am going to take a break -- now that I have obliterated the notion of tastefully deployed, pretty and soothing potpourri, this message square becomes clean space for the odds-and-ends of my poor brain and its pitiful, pitiable expressions (of life).


Ar! Harrumph!


If you knew me? You'd be laughing, too. As it is, you probably have shivers and goosebumps. Anyway... I am going to wash up, change my antibiotic i.v. bottle, and maybe try to sleep some. After, I will be potpourri-ing all over the damned place.

** *************** **

I'm b-a-a-a-c-k. In the interim quarter of an inch, the HVAC repairman has come and gone, as has, amazingly, most of the crankiness in the house. Three days of unconditioned air almost robbed us of civility. La Belle Bianca Castafiore took off, in fact, after the first stuffy night, checking into the Hilton nearest Marlinspike Hall in the Tête de Hergé.

If I had to put a dollar value on the time between then, and now... I might say $637.

About a week ago, I dropped my laptop on my decrepit right foot. It was already reddish blue and tremendously swollen due to CRPS. There was so much bleeding under the skin that the foot fairly throbbed due to the pressure. Finally, last night, it... well. It burst. Now sealed off again by its own internal pressures, the pain is hard to take. Initially, the schtuff was clear but quickly became yellow with spots of blood. Simply Sera? Sounds like the flavor-of-the-day for some knock-off lipstick. I've cleaned it several times but, beyond that, am clueless as to what to do. I see the ID Physician's Assistant tomorrow and maybe she'll entertain a few questions about this wounded hoof.

She's extremely nice, knowledgeable, and -- best of all -- approachable. She reviews my labs every week, and keeps me in the loop without alarming me overly much. Right now, we are both anxious about my still elevated white count -- how can that be, given twice daily infusions of vancomycin and cefepine? She said last week that she'd recheck the cultures for TB and fungi. Oh, yeah, low grade fevers are back, too. As for areas of increased pain, this foot is now vying for attention with my left shoulder.

** *************** **

Sam-I-Am would be cruising for a bruising were I the type of pet owner that swats her animals. You know the theory that "children" can best be manipulated into good behavior by the creative use of each child's particular type of currency? For instance, the tween who values the availability of video games can be successfully led to complete his English essay on the symbolism of the whale in Moby Dick by their judicious allowance or disallowance. That's a crappy example, but it's all that comes to mind. Hmmm. Well, using myself as a tweeny example, restricting my access to tennis courts might have been pretty darned influential in molding my behavior...

Ah, but back to Sammy. HE has ME backed into a corner, à la B. F. Skinner. When he decides that it is time for food to be offered, and when I am in the least resistant to his playful kitty pantomimes, this feline shyster turns to what amounts to nuclear warfare: first, he threatens to pee; second, he pees; third (after I cave in and feed him), he throws up. The first and second instances occur, of course, in an inappropriate spot -- the third, almost invariably on my bedding, or, on a creative night, carefully divided between my favorite quilt and the off-white carpet.

Tonight? He treated me to the trifecta. He decided he wanted to eat an hour early. I decided to ignore him. I rolled into the living room to talk to Fred about something, Sammy tailing me. While we were talking, I became uncannily aware of the Grey Ghost, perched on the sofa, assuming the well-known Pee Position, and fixing me in a cold, cold glare.

"No, Sammy! No, Poopy Head!" I yelled. (Poopy Head is a rarely used term of endearment.) Normally, I would swing away, arms flailing -- but lacking one shoulder, and the other being locked in a severe pain mode, all that happened was some ugly upper body jerking. Whatever, it was enough to shock him into momentary anuria. He beat a quick retreat back to the master bedroom, where I was working.

I explained, in loving but firm terms, that he had an hour to wait. He nodded. I went back to work.

A few minutes later, something began to nibble at the edge of my consciousness. I slowly kicked my submerged awareness up to the surface... and heard the unmistakable sound of cat claws furiously scratching against plastic. That, in itself, was fine -- even wonderful, for it might mean that Sam-I-Am was relieving himself in his grand (brand new) litter box, and then performing his after-pee syncopated percussion routine. But something about the sound was off.

So again I zipped off... pressing this power wheelchair to its speedy limits, taking doorways at high velocity, making the tight turns with impressive control of G-forces. Remember, as says Wikipedia, so says this blog, its unofficial mouthpiece. Ergo and forthwith, ipso and facto-dactyl!

The human body is considerably better at surviving g-forces that are perpendicular to the spine. In general when the acceleration is forwards, so that the g-force pushes the body backwards (colloquially known as "eyeballs in"[3]) a much higher tolerance is shown than when the acceleration is backwards, and the g-force is pushing the body forwards ("eyeballs out") since blood vessels in the retina appear more sensitive in the latter direction.
Early experiments showed that untrained humans were able to tolerate 17 g eyeballs-in (compared to 12 g eyeballs-out) for several minutes without loss of consciousness or apparent long-term harm.[4]

Got it? I took those turns, eyeballs well in, retina rejoicing, certainly pushing the envelope of that lame 17 g experimental record.

What? Oh, right. Back to Sammy.

It turned out that the funkitude of the sound was due to the fact that my cat was *outside* his huge brand new litter box, peeing against it, and scratching the side of it as casually as if this were normal toileting and not guerrilla warfare.

Okie-dokie, then! 2-0, Sammy. Ah, but has he succeeded? Has he won? The battles, maybe, but not the damn war!

We cleaned up after him (how sad that I feel it so important to inform the blogosphere that we are hygienic folk) but we did it with quiet, heroic resolve (cue music). I told him, once again, that he had to wait. He nodded. All the principals returned to their original positions.

But we have three cats here at the Manor, and why should the innocent suffer for the sins of Sammy?

So -- after waiting what seemed a decent time, much as a widow might take up dating after the proper interval between death and renewed lust, I fed the cats.

That, in itself, is quite a chore. Dobby and Marmy, son and mother, eat a different diet than the Samster, who has to stay away from all dry food. So we all gather in the kitchen, and they are as sharks swirling around my chair. I serve up the kibble for Dobby and Mom, spritz it with the the eliminate-the-smell-from-the-poo magic spray, and set it down for them to eat.

This is where the fun begins. Dobby, still officially a kitten, is very smart, and very fast. He is perpetually hungry and -- thanks to having been raised knowing nothing but loving approbation -- does not understand exclusion. So this is our dance with every meal: as soon as the dry food touches the kitchen floor, Dobby moves in for a few mouthfuls, then stands back to allow his mother her share. More importantly, he gears up for the grand rush to The Other End Of The House.

As fast as I can, I put Sam-I-Am's food in my lap and take off. If I am lucky, and I never am, I might make the door dividing the bedrooms from the rest of the domicile before Super Kitten. (Unfortunately, due to HIPAA -- or HIPPA, if you're WhiteCoat -- I am having to lie about the floor plan of The Manor. I wouldn't want to overwhelm my audience with accurate descriptions of its grandeur. Indeed, if you did not know any better, you might mistake our opulent digs for a normal suburban domicile.) Marmy gets the best of all deals, being left in peace with a supply of food, all the idiots having rushed off en masse.

I put Sammy's canned food, supplemented with the same magic no-poo-smell spray plus some water, on the floor. Dobby rushes forward, Sammy hangs back, making terrified eyes at me.

Oh, the drama of feline competition. I gently push Dobby back, and make encouraging noises at the elder, and completely mental, animal. Once Sammy begins eating his own food, in earnest, I show Dobby back to the kitchen by employing basic deceit and an abundance of love. He has learned that if he will follow me, I will give him a taste of the good stuff, a portion that I reserve from Sam's wet food. Every meal it is the same -- because Dobby is really and truly conflicted each time we do this. As soon as his energetic little body clears the area, I whirl around and shut the connecting door.

Sometimes, after Dobby and Marmy return to their feeding, I insert myself back into the Sammy Zone. It's a good time for us, a chance for him to get the individual attention he craves so much, and for me to benefit from his unwavering love. Usually.

Tonight, he was hitting on all cylinders.

Fred insists on buying him cans of tuna flakes mixed with egg. Sam loves it. This evening, after all the drama, he fairly scarfs it down, then jumps up on the bed to settle down on my lap...

...where he throws up.

Olla podrida, indeed. Pot pourri, you bet!

There is so much on my mind, so many things beyond animal anecdotes and tales of woe. I will have to attempt another Potpourri entry tomorrow. Consider yourself forewarned.

Excuse me, while I go check on the laundry.

"Despite everything, I believe that people are really good at heart."

Believe it or not -- and, likely, you do not, given my latest postings -- I don't think that videos and photos are sufficient to a blog.

Fred sent me a link to this YouTube video last night. Neither one of us can figure why we had never heard of this... event -- before. Late to the party and irrelevant, I nonetheless found myself belatedly typing away as if something might depend on it beyond my own sanity, outrage, and sadness.

This is a remarkable piece of footage that chills the soul. Knee-jerk leftist-leaning liberal that I am -- because real socialism is not available in a ready mix formula here in the states -- I respect the authority of police and believe, à la Anne Frank, that "(d)espite everything... people are really good at heart."

Usually, tossing in a laden quote from such a heavy source as Anne Frank translates as nothing short of cheesy -- and mightily lazy.

But I think I can pull it off here. The "ceremon(ies) of innocence" are so well documented, by the diary, by surveillance film, that assignations of guilt and innocence should be rote and incontestable.

Thesaurus.com claims these synonyms for incontestable: hard, inarguable, incontrovertible, indisputable, indubitable, irrefutable, positive, sure, unassailable, undeniable, unquestionable.

And yet, in both cases, all we really know is that the principles are dead -- and only in rereading do I see the double entendre, that ethical rigor is as much absent to these situations as mercy or justice, individuated or girded by systemic approbation.

Oh, big words, grand thoughts.

In this video, Michael Pleasance is murdered by police officer Alvin Weems.

When I read about the ensuing cover up, scary in its extent and practiced nature, I found myself humming Dylan's Lonesome Death of Hattie Carroll. (Really! Not a song I normally reference, it had been recently in mind due to the title of my post about Evan Tanner.) Most of the lyrics, I remembered, but not the all important last strophe wherein William Zantzinger faces the judge and is sentenced to six months for Carroll's murder.

When so much has gone so wrong, we all would like to be able to isolate the blame and forget that an ultimate necessitates a penultimate. When so much has gone so wrong, we forget that no event is discrete.

You who philosophize disgrace and criticize all fears,

Bury the rag deep in your face,

For now's the time for your tears.