Writer's Block and Its Detritus

NOTE TO THE READERSHIP:  After finding the dusty draft, just published, on conquering writer's block, I searched to see if I'd ever written myself out of that box before. Lo and Behold! Back on 10 January 2010, a more somber moi tried to scribble her way free of that writing snare. Just as self-centered and focused on pity as most of my posts, I don't get the feeling of resounding success that came from the "Cats Trump Writer's Block" posting.  There's a lesson there.  You should be getting a vibrating-cum-annoying-ring text message on your smarty-panted phone about now... and with every Pity Party Post published herein.  Yes, there was an app for that!  If you adjust your "Settings," you might be able to avoid future text alerts for depressing REPOSTS!

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Oh, my dahlink readers, I am so sick.

At least, this is a common, plebeian, ordinary sort of sick, as opposed to my usual krapola of unheard of neurological disorders and infectious disease firsts, auto-immune oddities and literally rotting bones.

You know that steroids weaken the immune system, right? That cheers me whenever I get some infectious process -- because when acutely ill, the first thing I am supposed to do is DOUBLE MY STEROIDS. Gee, let's take MORE immune-suppressing drug, especially now that the germs are attacking!

Okay, so here is the deal.

I have writer's block, I think. Plenty to say, that's not the issue. Hyper-awareness of my own worth is more the cause. When you know just exactly how little you matter, there's no point to yapping on and on.

Still, writing is invigorating and good for me. And, to be brought low by gunked-up stinky yellow mucus AND silence would be just too much to bear. Especially that "silence" part.

So I am going to continue this here post, this ode to bodaceous blogging, as a Live Blogging Event. Anything goes. The ridiculous shall be honored. No spell checks allowed.

No erasures, no deletions. Above all? NO CAVEATS. No breathy declarations of what-i-really-meant-to-say.

Here we go. Keep your fingers crossed in hope that, by the end of this process, I will have regained some sense of writerly purpose.

More and more, I am keeping the Boob Tube on, even when I am not watching it. This is typical, I believe, of people who feel lonely. Still, when I turn it off, I relish the silence and fuss at myself about the ridiculous waste of energy, and the pollution of noise and idiocy.

One of my Brother-Units was overly generous at Christmas time, and I used his excessive generosity to purchase a Wii system, with the Fit program and balance board, plus extra remotes and whatcha-ma-callits. I used it with great fun until New Year's Eve when the virus first made its concerted attack.

Shortly before Xmas, we turned the dining room into a library. Don't argue or fret, just accept it. Dining room? Now a library. Okay?

So we have a tiny old t.v. stashed in the new reading room, that no one likes to watch. In the bedroom, we have the main viewing machine, but Fred, especially, wants to replace it with a fancy-schmancy new one. The one in the bedroom is to be moved into the library (the tiny one already in there? I dunno its fate.).

The thinking behind these genius moves is that "We can Wii" better in there, since the center of the room is free. "Wii"ing in the bedroom, in addition to sounding like an odd excretory process, is a cramped endeavor.

I believe that fixing this situation will be my goal for today. This will entail sending The Fred to make the television purchase, slightly reworking the library layout, dealing with wires and connections and Semi-Technical Schtuff.

By the end of the day, The Library will have been humbled to the status of Room-With-A-Few-Books.

And maybe I can play a little Wii Tennis tonight. I confess that just playing tennis as a video game brings back most excellent memories.

My legs are on fire. The right foot is completely messed up, burning and twisting, bringing me down, pissing me off. In a nostalgic move, the shooting electrical charge that I associate with my first year or so with CRPS, is back, and the end point of the surge? You guessed it: all the way down the leg into the foot, culminating in fireworks within the spacious confines of my BIG TOE.

That first year (or so!), Fred was often treated to my loud hacking yells -- in the middle of watching a movie, eating dinner, deep sleep. Even though I knew that the sudden electrocutions of my feet were coming, anticipation did nothing to keep me from screaming with pain. I tried and tried to maintain silence, to not give a hint of distress, fear, or frustration. Most of the time, I failed. The instances of success were marked by an inability to breathe and palms gouged-- from digging nails, a failed fist. And here I am, nine years later, back at it -- a regular screech owl, talons sharp and at the ready.

I wake myself up, screaming.

Of course, I also occasionally wake up laughing my ass off.

In addition, I am often shaken back to consciousness by the weight of Dobby, Our Little Idiot, perched on my chest, a worried look on his face. It happens whenever I am so audacious as to put my arms under the quilt -- something I have been prone to do during this incredible cold snap. This triggers some large anxiety in him -- does he think I am being eaten by the quilt? Death by textile? [Dobby has a "thing" for threads, materials, weavings, tapestry and affects his evaluations so seriously that I can imagine him as a bent tailor, absentmindedly rubbing some fine cloth in between his index finger and thumb.]

It is unfortunate, though, this need to rescue me from my quilt.

I have just the one quilt that I am able to tolerate over my body. I sleep on top of another [lesser] quilt, and cover everything but my legs with this worn, beloved, rubbed-soft cotton handmade wonder... It is full of holes, stained [despite being washed twice a week] by coffee and, thanks to the seven major shoulder surgeries between August 2008
and April 2009, considerable blotches of betadine and -- sorry -- blood. It's as sanitary as can be... but is looking fairly sad.

I have tried other things and it is either a problem with weight or softness -- too much weight on this CRPS-afflicted body, and the pain levels and burning get out of control -- too little softness and the irritation to the skin also increases the burning sensations that are the hallmark of CRPS-type pain.

I miss getting between the sheets, though! Just like I miss shoes -- oh, God how i miss shoes!

Yeah, yeah, yeah.

Well, it looks like the television scenario will extend into the weekend, as Fred is getting a slow start, and I don't feel like irking him with request upon request.

Over on Twitter (another universe, Twitter!), I am shocked by the frequency with which I see folks writing these exact words in response to the current humanitarian crisis in Haiti: "What about the people who need help in our own country?" It's my least favorite form of argumentation, if it even qualifies as such. The only thing I know to say -- though I would never take up the argument on Twitter -- is "well, we are not talking about those people right now..." There's not a reasoned response to be made to people who are looking for a fight or who wish to use others purely as something to stand on. And I mean that almost literally and with near good intentions.

Into my head just popped: chowder. Specifically, fish chowder. I watched a recent episode of Chef Bobby Flay's Throwdown show -- about Manhattan Fish Chowder, meaning simply that is has a tomato base. What can I say? I feel catholic on Friday. It sounds like dinner to me.

Cooking has become something I very much enjoy, even as the mechanics of getting it done have become complicated. We foresee a day when I won't be able to do it any longer -- mostly because of my hands and their unpredictability, as well as the situation with my shoulders. Ah... but until then? I am becoming quite the cook. I've always loved it, but as I have needed to concentrate and think my way through the process more and more -- imagine! I got better at it! Go figure.

I've decided to perform penance (get this catholic shit out of my head! out! out!) for my sinful thoughts about Fred's persistent participation in Wednesday night suppers over at the Existentialist Congregation -- yes, the place being run by Militant Lesbians. This penance has taken the form of making the dish he takes to these weekly potlucks. This week, they got to feast on my carrots. It's my own "recipe," though I don't write anything down -- I think this is actually a common presentation for carrots, though The Fredster ooohs-and-ahhhs like it is something special. Cooking for 10 people, I used 15 whole carrots, cut into 1/4 inch rounds. A bias cut would be fine, too. Just cut the suckers up however you want. The more surface area, the more of the sauce you will taste... Then steam them until just soft. I make my own curry "powders," as I am very picky about spices... Sometimes, they are the only thing over which I have quality control. Why? Oh... I would have to go into the intricacies of getting out of the house, going shopping, etcetera. hmmm. You know what? I *started* a post a few weeks back, like the very day I was getting sick. It remains a draft. I will tack it onto the end of this post -- this post that is rapidly spiralling out of control.

Back to the hot topic of carrots. Where was I? Ah, curry. Cumin, cardamom, mustard, cayenne, coriander, and turmeric -- best if all are in "whole" form, then toasted and ground, in proportions of your choice, as needed. I add other spices according to my mood, mostly. Chipotle. Cinnamon. Fennel.

I suspect that I use spices as a form of sexual sublimation. Exotic, passionate, rich, intense. And so forth. Ahem. Cough. Titter.

Peppers. Nutmeg. Various peppers. Fenugreek. Cloves. Saffron.

Find what you like. For these easy carrots, you want to complement their sweetness and the citrus that you will also be adding. In other words, it won't be the star of the show, so keep it out of the "smoky" range and more in the Arena of Simple.

So... to the carrots directly, or in a separate pot if you are kinda timid, start adding your curry, then some butter. Then salt (sea salt, kosher). Finally, add the zest of one large navel orange, as well as about a quarter cup of its juice. Serve immediately or in the time it takes to fly across town to your pseudo-religious Wednesday night Christian-bashing session. Cough. Ahem. Titter... Cloves. Garlic. Chiles...

The stock market, in its infinite wisdom, has taken back all the goodness it gave just last week. Pow! Boff! Bam!

Incredibly, I need to rest now. And I am soaked again from the fever breaking -- for which I am grateful. I am just tired of washing up and changing my clothes several times a day! Before I lay down under my previously mentioned quilt, I will start a load of laundry. Added incentive is the fact that Marmy Fluffy Butt decided to mark my softest hoodie, the little beyatch.

So has slapping all these words down managed to break through the walls of my writing block? I don't know. It doesn't feel particularly liberating, but then that could be due to a mounting sense of frenzy and fatigue -- a simultaneous combination that is soul-wearying.

As promised, and without prejudging whether it really "goes" or not with what I wanted to say about "control" of cooking ingredients.... here is the kernel of a post that never made it. I haven't altered a word of it, which may come back to haunt moi, eh? I also have no idea why that particular YouTube vid was tacked onto the end, although I remember thinking that I loved this child, and wanted her energy and happiness:

okie-dokie, so we are sick as dogs... although, where the meaning of that comes from, i dunno. dogs are not, by nature, "sick."

right?

this virus is cruel. i woke feeling pretty doggone (who let the dogs out?) good. no coughing. temp 98.4 (no shit!) just an aching head, with pesky swollen glands. for me? a big nada. no problem. gonna coast through the day, get some work done, mebbe write a little, do my wii, face cleaning the bathroom (procastination issue).

i was looking forward to showing off for fred. "how do you feeeeeellll, ffffred, dahlink?"

"moi? moi? i feel fuh-fuh-fine, ffffred!"

while waiting for fred to wake up, i did morning chores, and began to lag. yes, the energy did flag, and i, i began to fade. i was, in short, diminished.

sorry. i was briefly channeling t. s. eliot.

or yeats.

it's so hard to tell, anymore. i grow old.

eating the peach is not gonna be my issue. no, i think that monster slinking toward jerusalem is gonna get moi.

hey, i bought a new toothbrush the other day! wait, i didn't tell you i went out, did i? well, i did. grocery shopping. and i had an emotional meltdown right in the middle of the damned store. see... i hadn't left the house in 29 days. that's right. TWENTY-NINE FREAKING DAYS. that's how high my pain level has been, how miserable my legs, how very, very bad it has been. oh, poor moi {peeking to see if you pity moi, yet...}!

anyway, i had been begging to go to the store for days, but fred didn't put together my eagerness with the notion of going-to-the-store as a FUN activity. so when we entered said establishment and he announced, "let's split up, we'll get done faster"?
i started to boohoo. can you believe it? how retarded am i, and increasingly so, with increasing frequency?

poor man. in his mind, i go out whenever he does (pretty much daily, and at least twice a week for social engagements. he had not counted the passing of TWENTY-NINE FREAKING DAYS, nor did he really register the number of DIY amputations of my legs that i had undergone in fits of desperation at the increasingly increasing pain. he *cannot*, of course, and i don't want him to follow the bouncing ball of my suffering, anyway, poor soul. i've ruined his life enough, don't you think?

oh, hell, where was i? did i tell you i am spiking a way high, a mile high fever?

the toothbrush. oh, yeah. so we were in the market, en train de faire le marché, when i remembered i needed a new one. i pop a few wheelies and race down the toothpaste, toothbrush, shampoo, deodorant, and sundries aisle. fred is tearing after me, the shopping cart careening this way and that... he sees me stop in front of the pitiable selection of plaque-scrapers, and calls out: "wait! we have a supply of new toothbrushes at home!"

now... i don't know exactly why that sent me over the edge, but it did. i had not been out of the house for... well, you know. do you get how hard it is to run a household by sending a guy with adhd to do the necessary errands? have you tried making a detailed grocery list when you are only able to go to the store yourself but a couple o'times a year? i am a very visual person. back in the day (i.e., before crps, before avn, before ai, and so on)? i just took a mental stroll down the aisles, pictured what was there, made my lists in almost perfect synchronicity with the actual order of the products. i made a killer list, detailed but simple, a list on which even the most shopping-challenged could rely.

no more. oh no. now i am liable to hand my sweet man something along the order of:

apples, if they are under $1.39 a pound. and fresh. also, please don't buy them if the skin is even slightly loosened from the inner fruit. you know what i mean. like they'd been stored in a cold bin for too long. we're looking for très fresh.

keep an eye out for endive. gots to have my endive.

toilet paper
pasta

lowfat plain yogurt (7)
drain cleaner

get yourself something for snacking
bananas
ham bone

celery seed for me, ground celery seed for you
italian roast whole coffee beans for me; columbian blend for you; when will we go to farmer's market to get ethiopian beans, hmmm?

white onions, yellow onions, please don't buy pre-bagged





READERSHIP!  How fitting that this video "does not exist"!  It's Karma for all the narcissism displayed above.  I shall reincarnate as a worm.

© 2015 L. Ryan

Okie-Dokie, Then!

I don't know how to describe yesterday, except to say that, during the night, evidence suggests that I ate a bag of microwave popcorn, one and a half apples, and a "carbsense" peach yogurt.  The evidence comes in the form of popcorn kernels all over the floor, one well-gnawed apple core, one apple sliced neatly in half -- brown but with that still (barely) good nutty apple smell -- smartly speared with a small utility knife, and an upside down carbsense peach yogurt balanced on the pillow I was hugging with wanton abandon.  A spoon smeared with yogurt sat neatly upon my carefully folded glasses.

In further riotous detail -- I woke hypoglycemic.

Back to yesterday, which shall absorb the blame and the shame for all of these disgusting nighttime activities.

I know that I apologized to my President, Mr. Obama, several times, even, on Twitter, for singlehandedly destroying the PCIP budget.

[ASIDE:  Please, MSNBC, among the many programmatic and philosophical changes you need to make, do not force Luke Russert upon us.]

As I was saying, I may have annihilated the Affordable Care Act all by my lonesome, just by the shenanigans of January and February, in our upteenth attempt to rid my body of an osteomyelitis that just won't quit.  Transfer to a Long Term Acute Care Facility was involved, as were superfluous surgeries, and massive failure to understand the machinations of CRPS / RSD.  One of the results of all the money thrown at my problems was the declaration that I had maxed out my PCIP coverage to the tune of.... "catastrophic" levels.  My main comment on that is that the maximum I was told I'd have to spend on my health care (not including, of course, premium costs and deductibles) was roughly $7,000.  Excuse me while I imitate someone doubled over in laughter.

So one of the joyous benefits of having been hit so hard financially in the space of the first two months of the coverage year is that I am exempt from paying any more co-pays for doctor visits, etc.  I am at that glorious 100% coverage realm, up where the air is so thin, one can hardly breathe.

And yet, every doctor's office that I visit demands that $25 or, at one place, that $55, before I can be seen.  Never mind that I've been with each of them for years and never, ever carry a balance.  (JOKE:  I'd rather die first!)  Now, this is the true me:  For a couple of weeks, I was just so tired, I said, "Okie-dokie, then, here you go!" 

Then I had the fire lit under my aching, red, and breaking-down butt.  It turned out that my orthopedic surgeon's office had NOT applied to my PCIP deductible the $2000 I put on my credit card when they called on January 17, 2012, claiming I needed to pay them the in-network deductible or they'd be unable to proceed with the grand screw-up of a surgery scheduled for January 23.  Did you follow that?  I could make it clearer, but I'm so stuffed with food I can barely think.

As I was investigating a weird charge from the LTAC, submitted by a pulmonologist I'd never heard of, nor needed, who also appeared to have no license in this area West of the Lone Alp... I became mired in the pages and pages of online data documenting the obscene, pornographic exchanges of money, it hit me that I could not find that $2000 payment from January.  

I can be quite the dip when it comes to money, so I thought a courtesy call to the orthopod's office was in order before I set my aching, red, broken-down butt afire.  Anyway... no, they had only "needed" about $200 of all that, and had just tucked the rest in between the brown corduroy orthopedic sofa cushions in their snack lounge.  Miss Melissa, after sternly reminding me that she had only known of the error since March, eventually returned the $1700+ to my credit card.

I had to jump up and down over and over on the radio that kept playing in my head:  "And what about the interest charges you incurred, nimwit?  What about the money you might have grown from that $1700+ had you been able to invest it in the equity that went up over 23% in that same period of time?"  Smashed that damned radio to pieces, I did.

So yesterday, Fred and I sat in the waiting room at ShoulderMan's office, discussing some hilarious scientific literature. [Not kidding!  He was showing me the studies proving that light, among all observable things, changes its behavior if... observed.  Hilarious and mind-boggling stuff that makes me believe in God even more than that rare child cured of persnickety and metastatic brain cancer.  Fred can be a brilliant man, knowing when to pull out the big guns.]  

Now, I already may have pissed one of the receptionists off, I am not sure.  I was trying to be helpful, but how often does "trying to be helpful" really mean "pointing out crap that no one wants to deal with, and thankyouverymuch."  All of these orthopods have installed "kiosks" for check-in purposes.  It scans your IDs, your insurance cards, updates your address and phone, and asks whether you're likely to vote for President Obama or Dickwad Romney.  Oh, and please press HERE if you are not white.

I always complain about these kiosks.  Several reasons:  I am in a wheelchair, and the slant of the screen makes it nearly impossible to read due to glare from the sun -- that sun that may emit particles or waves, but probably isn't a coherent light source, anyway, who knows?  I ask them for a lower kiosk, as well.  Think about it.  I am in a wheelchair.  The kiosk is raised for someone of normal height, standing.  And why am I there?  Because of my freaking shoulders.  There's something so not fun about having one barely working arm that you have to keep raising above your head to enter data that hasn't changed since the week before.

Ah, but none of those bitchifications were involved in my complaint yesterday.  When I rolled up to the kiosk, it had been left by its previous victim in mid-operation.  I silently acknowledged my agreement with the evidence of their frustration, briefly bowing my head, and saying my personal and shortened version of the Serenity Prayer.  There was no way to abort the half-finished session, so I just flew through each screen by pushing some version of "Don't Know" and "Don't Care." The last screen I saw, still dedicated to this long gone patient, offered me EVERY SINGLE BIT OF THEIR PERSONAL INFORMATION.  From social security number to address, phone, personal doctor's name, insurance data -- all of it.  I could have copied it all down, photographed it, or I could have gone slightly bonkers and rolled over to the receptionist to report what I thought a major flaw with their blessed little kiosks.  She said, "Oh, no, that's terrible." 

I shortened the Shortened Serenity Prayer and went back to the kiosk to enter my own data.

Fred and I resumed giggling over the double slit experiment.  ("In 2002, Jónsson's double-slit experiment was voted 'the most beautiful experiment' by readers of Physics World.")  I was waiting for my main man, Leo, ShoulderMan's left hand man, to call me back to the exam rooms, when instead I heard the receptionist's dulcet tones, asking me to report to her area.  Zoom, zoom, zoom, and there I was -- hidden, of course, behind the counter that was so tall someone in a wheelchair would never be noticed without use of an emergency flare.  

She has two things to accomplish.  One, could I please confirm the information I just scanned and entered into the goddamned kiosk.  Two, I owe a $25 copay.  I am already missing Fred and his promise of some mention of Schrodinger's cat.  I carefully repeat the necessary demographics, but balk at paying.  My chapped ass has had enough, already.

"Well," she said, between huge sighs, "I guess I can call and reverify your insurance coverage." 

"Okie-dokie, then!" I crow.

"You can stay right there, so you don't have to go running back and forth."

"Okie-dokie!" (Appreciative of her saving my thumb and forefinger all that effort...)

Twenty minutes later, I am the source of major human traffic flow complictions.  My wheelchair is blocking old men with walkers, little girls struggling with crutches, and various blue-hairs who just shoot me a dirty look before lining up behind me, despite my frequent announcements that I am not in line.

Every now and then, the receptionist says something in a loud voice and I've no idea if she is speaking to me, so I answer, even if at the "okie-dokie" level.  Occasionally, she says, "I'm so sorry!" and it is then obviously incumbent upon me to say, "You've got nothing to be sorry about."  Oh, how weird things get when you cannot see the person with whom you might be having a conversation.

Finally, I hear this:  "Oh, you're gonna hate to hear this, Ms. Profderien!  You are absolutely right. You don't owe us a thing.  You can take a seat now."

You'd have been proud of me.  "[cough::cough]  I don't suppose you could refund the $25 I had to pay last week...?"  And then I rolled my aching, red, broken-down butt to Fred, who was asleep under a book, snoring just the smallest bit.  He woke, thought I had already seen the doctor, and make ready to leave, cheerful at the well-oiled machine that was apparently in force.  I hated to break it to him -- we had yet to really begin.

The chase?  You want me to cut to the chase?  Okay... Leo called me back, told the same joke he always tells, the Nurse Who Really Runs Everything came in and I signed all the consents, and we looked at my blood work.  She kept saying, "Your CRP is *really* high..." After running back and forth to consult with the surgeon, she decided I needed to be the last case of the day next Monday, because odds are that there is more crapalaficious infection to be dealt with, and "the infecteds" are always operated on last in the surgical day.  She sends in the PA who says, "You know the drill," and then seems to fall into a fugue state.  "Bob," I said, "You seem really tired.  Why don't we just move all this along?" Bob seems grateful and says I need to "run" across the street to the hospital to pre-register.

Before I leave, I pick up all the paperwork (including the blood work results) that have fallen on the floor, and stealthily crept under the exam table.  I leave them in a place that's obvious, so that either the next patient can steal my personal data, or the Nurse Who Really Runs Everything can retrieve them, so as to fatten up my anorexic chart (we're on overstuffed Volume 3).

We did not know that hospital pre-registration was going to have to be done yesterday but Fred and I decide to see it as a good thing, meaning that we don't have to come back later this week, and can stay home waiting for the roofing dude to come save the collapsing roof over one of the rear porches overlooking the fruit orchard we share with our Cistercian neighbors.  Believe it or not, the whole thing sort of collapsed 5 days before the 5-year warrranty expired on the last time they came and did not repair it very well.  If there are any charges to come out of this repair, you can bet that we're inviting Abbot Truffatore over for dinner, al fresco, with his seat right under the most prodigious leak.

I pay the $5 for parking so that we can go park at the hospital, which will cost -- you guessed it! -- an additional $5.  Fred threatens to muzzle me as I launch into my "Dear President Obama..." routine.  Why try to save me with an Affordable Care Act and then bankrupt me with health care parking fees?

Anyway, we know this hospital like some people might know the back of their hands.  But right away, something is different.  I am in a cubicle with a polite young man who is reentering all that personal data stuff, when he pauses, actually stops working, and says, "Do you mind if I ask you a question?" 

Oh, what goes through one's mind.  "Yes, I know I still owe you many thousands of dollars.  I'm sorry.  If Google would just have a blow out of an earnings report, you'll be paid that much quicker.  In the mean time, would you accept $20 a month, or maybe a kidney?" 

But what he asks is this:  "Was your experience here back in January and February a good one?"

I think I swallowed my tongue.  "No," I said, "it wasn't." 

"Well, I am sorry about that, and I hope that from this moment on, your stay here this time will be much better."

I am tempted to yell out "WTF?" but don't.

Okay, so I got a Press Ganey thingy to fill out on the hospital, back in March, and filled it out with bloody honesty, but how the heck would he know anything about that?  And he is, no offense, just a data entry clerk.  And wasn't it anonymous?

I'll spare you.  The tenor of his overtly solicitous behavior continued throughout the pre-op check-in process.  The nurse was extremely polite and well-informed.  She knew what CRPS was.  She had an accurate list of my meds.  She listened as I begged for them not to change the marvel of the pharmaceutical arrangement that is helping me so much with the CRPS dystonia.  She did not make me repeat tests that had been done within the last six months.

She passed me along to the nurse anesthetist whom I absolutely HATE.  I am sorry to say that.  Ashamed to say that.  But this woman, every darned time, interrupts me when I bring up the need for stress-dose steroids pre-, intra-, and post- op... and then to please revert me to my normal dose.  She lectures me on the hospital's pristine record with steroids, given that it is one of the region's foremost transplant centers and blah blah blah.  This time, I talked over her, telling her that I was very nearly dead thanks to their own hospitalist not givng me ANY steroid for five days, while I became more and more altered, with systems failing, getting weaker and weaker, and no one sharp enough to check my medic alert tag, or even look at the hospital records from an admission a mere two weeks before.  "Oh, my," she says.  "That should not have happened.  I'm so glad we discovered it in time." 

Scrape me off the ceiling.

I tell her that I discovered it.  It probably would have been my last cogent comment. Vision fading, weakness rising, I asked the nurse who was giving me meds which one of all those white pills was my steroid.  She told me I didn't take steroids.  I believe I began blubbering "Oh, my God, oh my God." To this good nurse's credit, she RAN to get help -- and a syringe full of Solu-Cortef.

Anyway... we got through yesterday, I hyperfocused on the weirdness, and then we got a pizza, for comfort.  It was after 7 pm before Ruby the Honda CRV rolled gently through the labyrinth, among the ramparts and over the moats, drawbridges and cleverly converted battering rams, into the safety of the well-loved place called home.

I have not forgotten young Hannah, to whom I promised to look for inspiration in all this -- but I cannot think much about how mutilated I will be when I come out of anesthesia on Monday.  Later today, I will check on her progress, and again marvel at her strength, and pray to be able to imitate her just a bit, if nothing else.  She is doing well, I know, midst a sucky situation.  She's been fitted for a prosthetic leg and will soon begin learning how to use it -- which I expect will take her a full five minutes.  Keep on keeping on, Miss Hannah.

Bubbling Crude

May I ask for your kind thoughts?

Hopefully, I am not going through some fundamental change, just through some temporary difficulty.

It's as if I were under water, peering up toward the surface of the moat, trying to grab at the bright shiny disc, wanting to latch on -- however precariously -- to a stray ray.

The only thing I can think of is that my adrenal status may be messed up -- that would explain my fatigue and inability to think, as well as the more overt physical symptoms.

We are always guessing -- when one is supposed to "double up" on a steroid dose in the event of acute illness, and when one gets stuck in the pattern of an acute [chronic] illness like osteomyelitis? It's a real crap shoot, deciding how much steroid is needed for basic survival.

I didn't think it would fluctuate this much, though.

It's a piece of cake in situations like the flu or a urinary tract infection -- even in the event of a misnomered "flare" of lupus or CRPS.

I had forgotten how adrenal insufficiency sneaks around, a real lowlife among hormonal imbalances. That's how it has almost killed me on a number of occasions -- it muddies the waters, slows the wits, and only amplifies what was already vague.

Yes, my big clue about falling into an adrenal crisis is the absence of specificity.

I sound like a dolt.

I whine; I emote; I sound all of 3 years old.

My back will ache; I may develop diarrhea.

Since fever and bone pain are already extant, those things don't offer any diagnostic gift.

I crave salt to such an extent that mere popcorn won't do -- I am more likely to lick the tiny iodized crystals directly from my palm.

At a certain point, I begin to call myself names. I mean, I get really angry with myself. All I need do to forestall disaster is to dose myself with steroids.

But it becomes a big mental deal. I don't want to... I hate steroids... Nevermind the absence of logic, nevermind that I am risking death over a dislike of the side effects of a bleeping medication.

Red flags wave. I sweat. I swear.

I cannot find the form the body prefers -- hydrocortisone -- but easily lay a hand on a huge bottle of 20 mg peach-colored prednisone.

Back in the day when I was really brittle, we kept the makings of an emergency injectable dose of Cortef in a baggy and I would refer to it as I might speak of an evacuation plan in the case of fire. After years of dealing with it, I came to prefer just grabbing some pills and washing them down with a Diet Coke.

Every time, I would note that another of my idiosyncratic symptoms for adrenal insufficiency (when unnervingly close to adrenal failure) was difficulty swallowing.

Friends, I am so tired.

Of pain, yes. Of inutility, of course.

Of being a living advertisement for a wasted life, mostly. And that, it follows, leads to massive self-pity, such that excess value comes to be placed upon what, just moments ago, I knew to be worthless.

All this, presumably because of a gland.

Fred has fled (say that 20 times, quickly), off to buy another huge container of Saw Palmetto for his benignly enlarged prostate -- he must be in tune with all things glandular today! It has been a long while since I cried like a spoiled infant, angry and frustrated to be left at home, wanting a ride in Ruby, the Honda CR-V, outfitted with sexy, virile Bruno, the wheelchair lift.

But it doesn't feel like what I imagine a tantrum to be. It feels more like an overflow valve has been activated.

Like seepage.

CRPS is attacking the right side of my body with an unbridled ferocity that has left me strangely unmoved. I am losing beaucoup vision from the center field of my right eye. I have collapsed into the bathroom wall several times this week, having reached that exact moment when falling was not a choice, no longer a case of "well, if I just let go, I can fall and the worst will have happened... then I can get back up."

Yes, seepage seems right.

"Bubbling crude."

Do you wonder about Force of Will? I do, too, as I usually am not without a good supply. It seems I've been found lacking.

Anyway, I've downed the pills. Surely they should kick in any half hour now.

Let's call this a post, then, and go be hot and cold simultaneously over there, where we can at least see the television and reach the phone.

[As always, I am so grateful you stopped by. We have 42 bedrooms, all in a state of readiness, if you would like to stay the weekend. Most of the staff is off duty, though still in residence, as we celebrate May Day like nobody's business here at Marlinspike Hall -- but what creature comforts we have are yours. There will be a skeletal crew on call in the kitchens and stables. Remember that internet access is restricted to The Turret.]

May 1, 2010: Clearly, I survived and am faced today with this ridiculous post born of cortisol-lack. I will leave it, I supposed, as evidence of exactly how stupid and self-obsessed I become when circling the drain of an Addisonian Crisis. I have a high fever that seems unrelated to the infection in my bones, and more like a cold/flu/viral sumpthin'. Once the steroids were on board, the nagging, annoying symptoms of adrenal insufficiency cleared right up, leaving behind just the usual fatigue, the usual pain, and the usual wealth of self-pity.

Thank you for your good and kind thoughts.

My BS

Major Boogers! Captain Secretions! Holy Hay fever!

No, not allergies, just a random outburst, but with a theme.

I am being put on sliding scale insulin. [Late breaking update! No insulin! Yay! He is adding Amaryl. Wise Choice, Wise Choice...] Too bad I have never paid much attention to the uptight and innately irritating Diabetes Educators that come to my bedside whenever I'm in ICU. Given that I only learn well in cement-blocked classrooms, where I sit in the back, huddled with a caffe latte, it was always a waste of breath.

Fred just sketched the major points again for me -- in a matter of 2-3 minutes -- and wasn't condescending or obtuse or nothin'.

It's the infection that has caused my blood sugars to go schizophrenic. That's what I was told. I don't understand how or why that could be, but if so, at least I will be able to stop the insulin when the infection(s) is cured. Right? "Before" -- I was put on Starlix because steroids were elevating the blood sugars. Now infection gets the blame.

Wanna hear how wacky these readings are? (Ha! Whose blog is it, anyway?) Let's see... Oh, and before every meal, I take 2 120 mg Starlix, an oral med designed to help keep this krapola under control.

Sunday -- at 8 am it was 135. Around 2 pm, I ate one boneless, skinless nuked chicken breast with herbs, had sugar free Jello with one dollop (about 1 tablespoon) sour cream. Four hours+ after eating that? 286.

How about the creepy fact that if I test blood sugar between 10 and 11pm, the readings are always between 240 and 250?! Is that not creepy?

I don't sleep much. Several times late at night, I have tested because of an inexplicable weird feeling (a host of generalities) -- to find readings in the 300+ range. It was my understanding that hyperglycemia didn't really have any symptoms --but I seem to have some sort of sensor -- vision is blurry, thirst, and a vague sense of not feeling well.

One day when I was really hit with fever and pain -- 252 was as low as I could get --even with an almost zero carb diet and starlix. I hope Dr. Go-to-guy's Nurse can explain this schtuff to me.

This morning, my fasting reading was 195.

Shoot. I don't wanna give myself shots. Cure the freaking infection.

chris leben murder

Deconstructing the possibilities of how and why someone googles their way to this facetiously fecund fiction that is elle est belle la seine la seine elle est belle is sometimes alarming, sometimes a sad commentary.

Two people arrived yesterday after searching for "chris leben murder."

I have to confess to swallowing that possibilty hook, line, sinker.

It was completely within the realm of possibility that Chris Leben might have murdered someone -- and outside the octagon, too.

Action, reaction, over-reaction: There I was, googling away on Chris Leben and homicide.

This is what I found.

First of all, I have added an expression to my repertoire! Apparently, in MMA commentary, winning "by murder" is not a bad way to win, and usually does not involve leaving anything in the hands of the judges. In fact, the image that sticks in my visual cortex is a rude ground and pound, with lots of "short elbows" and "hammer fists" (I will never be able to get rid of the sound of Matt Serra when he was cornering fighters on TUF -- elbows/hammerfists, "you can do it all day long..." and "we're breathing, we're breathing...")

Outside of winning an MMA match by means of murder, the only recent allusions to the imposition of death comes from the sad news that Justin Levens has apparently murdered his wife and then killed himself.

(Levens -- Leben -- imagine hearing it on the radio or bleeping from a television... imagine kind of expecting to hear something along these lines... about LEBEN. You might end up on a weird blog trying to find a reliable police report midst a bunch of virtual kitsch.)

So... it is a matter of Levens. It is a matter of his wife, Sarah McLean-Levens, presumably killed by her husband's hands.

Allegedly, presumably, probably. And the immediate impulse is to hypothesize 'roid rage. He was known to have a problem with prescription pain killers, which were apparently found in large quantities at the scene and at their home. That would certainly resonate with crazed behavior -- but the search for anabolic steroids is on.

I am glad it wasn't Chris Leben and sorry that it had to be anyone. The fact, though, that anonymous people, unknown to one another, had no trouble imagining it to be Chris Leben? Well, he may want to consider why that is, and what he can do to squash any further unfortunate Google search terms.