Blood-red, ruby-red, cherry-red, my chipmunk cheeks are crimson.The synonym-driven blurb above is what greeted me when I popped open the spare laptop balanced on my belly, my first reflex upon regaining consciousness. Other clues to recent activities included peanut halves, both whole halves and crushed halves, two brushes full of cat hair, several strands of which -- perhaps even amounting to a tress -- were up my nose, the ensuing histamine reaction having been the source of this rude awakening. A novel, cracked open to page 174, lay upside down on the pillow next to me, along with a telephone, a television remote control, and a licked-clean 6-ounce container of peach yogurt. That about sums up life as I know it.
Stippled and florid, these spotted swollen legs -- so violently inflamed -- are vehement, are ruddy.
"Ruddy is closer to red than to rose," intones one who ought to know.
My bolshy red ink comes to mind.
My face has been bright red or, at least, pleasingly pink, because my fevers have gone up a notch. I don't mind overly much because the other gift of the fevers has been an improved capacity for sleep.
I've been hitting and surpassing the temperatures that doctors say to report pretty early in the day -- peaking at around 11 each morning. I don't bother calling in about fevers -- haven't in a long time, even though achieving such fevers while on steroids is a rather remarkable achievement.
The decision to note them, but to ignore them -- absent three clear symptoms of impending death -- was codified at the end of my hospitalization in September. The day of discharge I felt about as bad as I felt the day of admission, and as I sat listening to the Infectious Disease Dood tell me to be sure and return to the Emergency Department if my fever registered above 100.7, the nurse's aide came in to take my vital signs and announced that my temperature was 100.8.
Infectious Disease Dood scribbled in my chart and started talking faster; The aide noted that my temp was up even after an earlier dosing with Tylenol; I started laughing and couldn't stop. When he had run out of the room and she had filled every available container with ice -- a favorite activity among nurse's aides, especially when I request "just water, please" -- I decided that fevers were insufficient cause for painful bumpy car rides or lame telephonic communications at odd hours to medic-types.
Besides, I often felt better with a spiking fever: energetic and focused, bright-eyed.
Until the last ten days or so. Note: I tend to say "ten days" whenever I really have no clue as to how long something has actually been occurring. I know that two weeks is inaccurate and that the change I wish to highlight has existed beyond a week, so "ten days" seems an acceptable bit of imprecision.
Right... So... The temps have gone up over 101 every day lately (What do you think of "lately" here? Does it work well with the "ten day" notion, that particular span of time?). Instead of energizing me, gifting me -- and hence, you -- with wit, I'm about as dull and listless as can be. Sleepy, pouty, and, to get us back on point, red-cheeked, and afflicted with synonyms.
Until the last few days -- a temporal division about which I feel sure -- spasms and tics have also been part of the gift. Despite concerted attempts to emulate the Apostle Paul, to regard them as God's thorny donation to my imperfections*, there's been little ensuing delight in the weakness, difficulties, or hardships brought on by the violent jerks and stabbing electrical impulses flying up and down my legs and, rarely, forearms.
I've railed against this non-epilepsy before. Spasticity in CRPS is little understood, usually glossed over as just another symptom of a degenerative neurological disease -- or, if you are a turd-like individual named Ochoa, these scream-inducing fits are part of the fakery, evidence of people feigning misery in return for the spoils of attention and disability payments.
I shouldn't even continue to bring the bastard Ochoa up... and wouldn't, except that I've no discipline these days (at least not for the last ten or so!). Also, since the research into CRPS-related spasticity and movement disorders is smack-a-sweet-dimpled-baby-butt new, the investigators are also new to CRPS' sordid history, and cite him at least once, for thoroughness' sake, ignorant of his "expertise" in making money as a forensic expert in tort cases by claiming that CRPS does not exist, or testifying that patients have fabricated the symptoms, out to cheat workers' compensation insurance.
Workplace accidents account for many of the traumatic injuries that constitute the noxious event that can initiate CRPS, and so for decades, the only real public discussion of the disorder came in the courtroom, where injured workers sought compensation benefits, almost always without success. Ochoa profited from others' misery, and perpetuated it, in a manner that can only be described as obscene. Like Justice Stewart, I know pornography when I see it. Gladly, his voice has been mostly silenced, but the echos of the past are too often replayed. His opinions, unsupported by research, and evidently for sale to the highest bidder, continue to stigmatize patients with Ochoa's characterization of them as "illegitimate conscious malingerers and individuals with Münchausen’s syndrome."
Several rulings have directed that his testimony be discounted, as jurists, troubled by the lack of scientific foundation to Dr. Ochoa's ideas, and by the fact that someone called on to determine the presence or absence of CRPS had never, ever found the disease present, or issued an opinion in favor of the patient -- not once in hundreds of cases.
Ahem. Okay, so the man makes me nuts. I had rid myself of the Ochoa Plague largely by ignoring the citation of his contributions to medical bigotry. But as The Painful Jerks have become part of my everyday life, and as my doctors professed sympathy but little understanding, I found myself in the familiar position of having to do research in a subject far outside my area of expertise. Many of the papers on spasticity are written by academic researchers, not involved in the clinical management of CRPS, and uninterested in its exploitative judicial history. And so there he is again, The Turd, mocking me from the margins, quoted again in the text, even if just as an anachronistic oddity.
Baclofen worked for a period of time. It still works but just not well. Because I know that the Great Spasms can go on almost continually, I am grateful that Baclofen (or *something*) has reduced the incidence to just a few hours a day. Because I know that I can have both legs and both arms simultaneously flying through the air with the greatest of unease, I am grateful that baclofen (or *whatever*) has largely reduced that focus, most of the time, to one leg.
Is it really doing a darned thing? I don't know! And yet, like every day in recent memory, I am scheduled to take 60 milligrams of it, divided into 4 doses. It makes me loopy, dopey, but when I've stopped it, my subjective interpretation is that the spasticity is worse and more frequent.
Sometimes it is a funny annoyance and not so much painful as astonishing. You probably did not notice that I spoke of using a "spare" computer, a back-up laptop. The large mug of hot coffee with milk that my right hand jerked into the air last Wednesday has something to do with my current need for multiple machines. Sizzle::fry::Sizzle::fry
And Thursday, after two appointments and little sleep, Fred gifted me with pizza, double mushrooms, a wonderful treat that really hit the spot. I was dreaming of one of my favorite breakfasts, cold pizza and hot coffee, and heading to the kitchen to carefully wrap my leftover slices, when ka-blooey! The plate took off, launched like a freaking frisbee. My 4 slices landed upside down and were immediately subjected to fierce cat licking (else I'd have invented some sort of pizza sanitizer).
There have been instances of hot pots slung from stove top to floor, and a few unanticipated knife tricks. My legs have given out mid-trek to the bathroom and according to some legends, I appear to have kicked a few people.
I'm convinced I'm losing brain cells and plan to use the declining quality of these blog entries as proof.
Part of that body of evidence? This video from last night, published below. Clearly, my wayward brain is overloaded and misfiring, because it almost seems like my well-honed cinematic curiosity is now satisfied by the mere presence of one camera and one cat, taking improvisation all the way to the zoo, as it were.
I can match some of the tawnier and fluffier samples of fine feline fur found in my nasal passages this morning to the photogenic Buddy, a juvenile Maine Coon also known as The Freakishly Large Kitten. He evidently shares my affection for yogurt. With his usual powers of concentration and his proven ability to stick his big little head into just about anything -- so long as food is his just reward -- Buddy goes after the few remaining molecules of peach yogurt with an enthusiasm that I deeply admire and vaguely remember from my own time among the living.
* 2 Corinthians 12: 7-10
Therefore, in order to keep me from becoming conceited, I was given a thorn in my flesh, a messenger of Satan, to torment me. 8 Three times I pleaded with the Lord to take it away from me. 9 But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. 10 That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.