(found under a pile of scrap paper, dated 3.19.2013)`
|Última Cena - Juan de Juanes|
i just got an email from my doctor. he says he is concerned and wants me to "come in." good thing i didn't check my inbox until after office hours. oh, and somehow my phone was turned off today.
i don't wanna go because i know what that means.
i am quite proper looking today, in blue scrub pants and one of my post-op shoulder shirts, the yellow one that now is spotted due to fred's attraction to cheap-ass laundry detergents like Yowza Powda or some such bleachy blend. the fashion needs of a shoulderless woman with severe allodynia are complex, so ruining a perfect post-op shoulder shirt is a royal pain. i also had it in the most beautiful of blues but they cut it off me during my last ambulance ride. i was wide awake, and not coding or anything, they didn't have to grab the shears and destroy my clothes, damn it. i have one shoulder, just not the other. and the one i do have is bionic and the titanium again infected with a slimy, scheming network of a bioflim community of bacteria. i imagine it to be like a green, scuzzy, sticky jelly so strong that it's impervious to mean looks, lasers, scalpels, and boiling water. dip the stuff in acid and it just laughs at you.
you should attempt Bra Wearing with one shoulder gone and the other infected. go ahead, i'll just hum a few bars while you curse.
doc swore to me that we were just going to aim at "putting out fires." he promised. he's my i-won't-lie-to-you go-to-guy. but i screwed up, not him. there was a violation of protocol. i wrote him in the middle of the night, saying i was anxious about some things. you know, like passing out, not being able to remember sunday, and having my legs covered in bruises despite having declined tante louise's invitation to an alpine ski event. maybe that's what i did sunday. and as i was making a downhill run i crashed into a tree, got a concussion, causing me forget the entire outting, bruising my bodacious bod and spawning a spat of g.i. bleeding. works for me! it's a plausible plot, even if the Lone Alp in our region is bald of snow and tante louise just wanted to lounge about the lodge drinking. hot chocolate. with the little marshmallows.
no one has ever commented on my avatar here [this was composed on a writer's site, not blogger]. anyway, the picture is of two marshmallow trees. i am THAT gullible. i wondered aloud one day, standing next to my sweet stepmom, drying while she washed, where marshmallows came from. "the marshmallow tree, of course," she quipped. i don't get quips, they go zoooom, right over the old profderien's head. why would anyone lie about the genesis of the marshmallow.
she got a lot of mileage out of product-specific trees with me. if i weren't rather precocious about human reproduction, she probably could have pulled off having babies arrive via gently rocking tree limbs... or pine cones.
the entire crowd back then enjoyed my many stupidities. until i was in high school, i thought "mustard" was a dirty word, because that's what i thought they were saying in the good, the bad, and the ugly, every time someone was called a "bastard." i would give someone the hairy eyeball and slur "you mustard" at them, turn on my heels and stalk off, leaving devastation and much confusion in my wake.
there were repeated calls for me to perform the enduring turtles' hit "happy together," especially the stanza that goes "no matter how they toss the tights..."
i was an entertainment package. of course, the greatest story of the gullibility of the profderien shall remain untold, as it still kind of ticks me off, though it was, i admit, very funny. i'll tantalize you with the vaguest of hints -- it involves that famous 17th century french naturalist and author, oussama mon chénier. you probably know the joke.
i know i need to go, go-to-guy is rarely wrong, though it has happened.
i know i need to go, though, not because of his prowess as a physician, but because i am crying. i only cry when i am very sick. it has nothing to do with sadness; it is something that my body does when the level of infection in my bones and the inflammation in my arms and legs from crps get... out of hand. why would i be telling you about my penchant for cursing people as mustards and singing that old chesnut of tight-tossing and be weeping? who can tell of marshmallow trees and cry at the same time?
"the candyman can..."
Homer: "Who can take some vodka, sprinkle it with ice, pour it down your gullet 'till the world seems really nice? The brandyman. The brandyman can if you're over 21...
Lisa and Bart: "...or just sixteen in Amsterdam!
i am hot, i am cold, i am sweating, and i am shivering in my softest sweet quilt, all at the same time. crying, laughing, and reassuring panicky partners that "it's all good!" honey badger don't care!
sweet fred, and la bonne bianca, even sven and his son, cabana boy, hell, why not include the entire cistercian community next door, plus the crack whore sitting on her stoop, taking a sun bath, as serene as i've ever seen her lovely face? they all, every one of them, know that when i am so rosy-cheeked, laughing, and weeping, we soon will load up ruby, the honda cr-v, tossing in packed bags and wheelchair battery chargers, "just in case." but we are so tired.
i just want to take some ibuprofen. that's the irony of the whole thing. that's mostly what i wrote to doc about. mostly. there was also the anxiety, the insomnia, the pain, the bleeding, the lost day (during which i got lots done, apparently, and was quite the cheerful one, too!). the four fingernails that i've had to pull out, the toes that began bleeding from the pressure of water from the shower. is it possible the pressure of the water caused all the bruising, too?
a spoonful of sugar and 600 mg of ibuprofen will help the inflammation, which will help the fever, which will stop me from crying and having to ask for help all the damned time. but no... even though i am forever stuck on the accursed steroids.
i try to keep the steroid dosage down for so many, many reasons. but maybe, since i have to take it anyway, i can increase that. the relief that it provides though is treacherous and false, like the knight in dark armor who will not raise his face plate. face plate? i dunno. some of the people around here so lost in fantasy would know. but i am betting that face plate is close to right.
i will take close to right.
among the many crappy things about the wicked corticosteroid is that while you can leap up in dosage, you must taper down both as fast and as slowly as you can. good thing that i understand that sentence, 'cause no one else will. the pain of just suddenly dropping back to your regular dosage, on top of the regular pain? well, i guess i lied above, because THAT can make me cry, also. a rapid prednisone taper makes bones hurt like nobody's business. i've never asked or looked into why that is so, but learned it was not folklore the first time they put me on them, 16 years ago. i think it was only a five day course after which i was to taper down something like 5 mg a day.
"pshaw," i thought. five days, i'm done, and i felt so much better, too! the next morning found me unable to stand up, calling the doctor (now on the Shit List) who laughed.
anyway, i am pretty much in charge of the dosage and have been for a couple o' years. one of my dumbest mistakes, and one that i make over and over, is to fail and double the dosage under "stress" conditions. i am told to double it "when you are sick," and when i stop laughing, i realize they haven't a clue, either. every day now, i spike to anywhere between 101 and 103, the pain is unmanageable, there's the bleeding, the increasing fatigue, the insomnia -- so when is it, exactly, that i am sick?
staying on an extended elevated dose of steroids is not an option. the people around you would agree, were it put to a vote. these aren't anabolic or androgenic steroids, no, these are the over-prescribed cheap shortcuts that make you feel better quickly, while ruining your bones, your eyes, your blood sugar control, and your ability to heal or fight off infection. take them on an extended basis and you've the joy of fat pads and a moon face, ravenous appetites, and blood work anomalies it would take a wizard to decode.
so, clearly, that's the answer. i'll double up on steroids for a bit and enjoy the fake benefits of a lowered level of inflammation.
or i could just "come on in..." like a spy coming in from the cold. probably, i am just a quart low, need a top off, some fluids, and my tires rotated.
oops, crying again. thinking about i.v. access, ports and picc lines that will suck up every liquid within a mile but won't donate a drop of blood, so what is the point? every stick risks a spread of crps but that sounds like crazy talk to the lab people, who tie tight tourniquets and slap my hands and forearms trying to get thinned out prednisone veins to "stand up." tell them to stop and they threaten you -- "you explain to the doctors why they don't have the labs they ordered." try to explain that it's not a phobia or even the pain, it's the possibility of permanent spread of neurological impairment and they wink at each other.
i don't often remember this and wish it hadn't popped up just now. there is so much ignorance about crps. i had a bad bout with pneumonia, in 2005, i think, and stopped breathing. poor fred... he called doc instead of 911, got put on hold, even, before they understood what he was saying and made the emergency call themselves. all i know is that i got sick on a friday and that sunday night, i said, "i think i'm dying," and the next morning, he thought i was "sleeping in," when in actuality i was taking a dirt nap. i woke up on wednesday in an unfamiliar ICU, on a respirator.
the nurse seemed nice enough, at first, and i was reassured that fred had been there by all the signs posted around the room in his neat handwriting. "please do not cover legs, please try not to touch legs, please this, please that..." it was sweet and it meant i did not have to try and explain things by pantomime or scribbling on paper i couldn't see with pens i could barely hold.
but then she started playing The Game. "This here all over your legs? You ain't been diagnosed right. I seen this before, up in Podunk County, and it ain't no SRA, CRSPD or whatever you and your husband been told. This is plain old cellulitis and I'm gonna cure you with some lasix, massage, and epsom salts. First we gotta stop this nonsense of you falling all to pieces just from getting touched. You almost broke my hand last night kicking at me. I did not appreciate that, no ma'am."
I thought, okay, this would be a great time for a nursing supervisor, a doctor, a physical therapist, anyone... to come walking in here. she took fred's signs down, talked about how i had been "psyched out" into believing that something like the fan blowing could cause pain. apparently, i tried to destroy one of their revolving fans, too, while sweetly unconscious. i guess they were trying to bring my fever down. all of which helped explain why my arms were in soft restraints, tied to the bed.
The Game consisted of her holding up her hand, roughly 18 inches from my feet and slowly, slowly inching it closer, all the while spinning her pointed index finger and adding a sound track of "watch out... the big bad mean nurse is going to TOUCH you," at which point she would make a stabbing motion with her index finger. i couldn't accurately gauge time, and The Game probably could be played in 2-3 minutes but it seemed like a half-hour, at least, while i prayed for fred to come, for anyone to pop their head in.
when she finally did jab me with her fingernail, i was so tense, so afraid, so anticipating the pain i knew it would cause, that i ended up learning how to stop her by default. she jabbed, it hurt, and add that to anxiety and i was fighting the respirator... not normally a good thing, but it does make every alarm to which you are attached issue tornado sirens. the heart monitor, because your heart rate spikes, and the O2 and pressure sensors on the ventilator scream holy hell.
most ICUs have at least on respiratory therapist on the unit at any given time, and theirs was in my room with a glorious swiftness. she could see the panic, i think, in my face, and it turned out that my nurse was on loan from a med/surg floor for a few days, covering for someone who had to take a sudden leave.
i couldn't be extubated for several more days but i learned that my only defense to The Game was to fight the respirator and make every alarm available sound. that nurse did manage to jab me one more time, but that was when she decided to do it in my sleep -- and even then, i set off the alarms and, out of frustration, i did kick her. that was witnessed by a hospitalist who kept looking at me quizzically as i continued to go nuts every time she approached. i didn't see her again, and once i was extubated and recovered my voice -- i used it. it had been an exhausting and terrifying ordeal.
i wish i had not thought of her or The Game.
i confess to kicking one other person -- same hospitalization. it was a doctor, don't know who he was or what specialty he represented or even why he was there. when they had done cpr at the house, they had fractured my sternum -- could not be helped. but that meant that lowering the head of the bed for any reason caused horrible pain right in the center of my chest, along with a feeling of not being able to inhale. so we tried to do things like baths and dressing changes, bed linens changes, extremely fast. the nurses and aides worked like a seasoned pit crew.
in the middle of both a sponge bath and a change of linens, along with a respiratory therapist changing the tubing on the blasted vent, along came this unknown doctor man. he gasped at the sight of my legs, something everyone with crps appreciates, and without speaking to me, introducing himself, nothing, he dons a pair of latex gloves and grabs my legs -- both at once, one per hand, and runs his plastic hands up and down while i engage in silent screams (the alarms are off due to the bath, etc.).
the nurses and the RT try to get dr. idjit's attention but he is heavy into his fascination with these sexy legs of mine and is continuing to pinch, poke, and i don't know what else.
the respiratory therapist must have seen it in my eyes.
"don't do it," she said, "we'll get him to stop..." but she was too late.
i kicked him square in the chest, as he was leaning way over the end of the bed, and sent him flying backward into the wall.
he took it really well, finally heard the magic "crps," and was immediately apologetic. had i injured him, i am not sure things would have ended on such a benign note. as it was, every time such an incident occured, a cascade of burning neuropathic pain would begin that could easily last 8 to 12 hours, while the "trickster" or the ignorant doctor got to waltz out of my cubicle and get on with their lives, not knowing the wreck they've left, their hit-and-run.
the pain in my left arm is changing and deepening, but i am all cried out.
this is all my fault. i should not have reached out in the night, should not have complained, should have thought about increasing the steroid dose. in the morning, i will call and schedule a blood draw, to see if i need a transfusion and just to cover all bases, get the white count, sed rate, and crp.
now... there is the reasonable, responsible, non-weepy profderien..
besides, if i had to kick anyone now? i'd break my ankle again, plus a metatarsal here and there.
i'm gonna snow myself tonight -- again, i have permission to do so as needed. all it usually takes is the addition of two percocets, two tizanidine, and as much baclofen as required to stop the spasms.
my mp3 player is all charged and ready to go, with lots more nina simone added, and a new old loudon wainwright the third. we have mary black and a sentimental selection from serge reggiani.
in case of resistant insomnia -- again -- i loaded one of my favorite compline recordings and i can think of sweet brother william, always the one in trouble at the monastery, who intervened when father anthony and i were warring over communion.
sweet william came to me as i sat in contemplation, a glass jar of milk in one hand and a plate of fresh baked fig bars in the other. in solemnity did we down all the milk, keeping our dairy moustaches, and with joy did we munch on the fig bars.
and all was well. brother william would cheerfully go back to whatever punishing task had been devised for him, scrubbing the flagstones in the cathedral, usually. i could truly contemplate, watching him, or making it down to the pond to feed the ducks fig bar crumbs.
© 2013 L. Ryan