it's not my fault. i'm sorry.

So we are waiting patiently for the vet's office to call and tell us that Uncle Kitty Big Ball's toe has been successfully chopped off, but a watched phone never boils.

In the interim, I have been battling my persistent vegetative state. My motivation? The surly look from The Fredster last night, when I called out, "Ooooo, Fred! Would you mind, heh-heh-heh, hooking me up?"

Twice a day, roughly at noon and midnight, he connects me to my "medicine ball" full of vancomycin -- which involves washing his hands, flushing various lines with saline and heparin, disposing of trash, and so on. By midnight, he's entitled to a slight attitude. But the surly look? It's rare that he lets that loose on me. Surly progressed to outright hateful when I posed the question that I keep forgetting is forbidden: "Are you alright?" That engendered a plain-but-effective glare. Unfortunately, I had a follow-up question, the first having been so well received. Yes, the inimitable: "What's wrong?"

After slamming in the heparin, unclamping the old medicine ball, he turned around and walked out.

I turned out the lights in the bedroom and just sat on the side of the bed, strangely calm. There are moments when I am profoundly grateful that I'm as old as I am, as experienced as I am. I just sat... thinking of Fred's day. How had it begun?

Too early, that's for sure. How had we greeted one another?

I complained and asked for a favor, straight away. Did he have to tend to my needs often during the day?

He had to do some housework that I would normally do, and also fend off my commentary about it. He had to drive a good distance to the Infectious Disease Dood's office to pick up my week's supply of vancomycin, and take Uncle Kitty Big Balls to the vet's place as well. That ate up about four hours of his day. Later that evening, around 10 pm, he went grocery shopping -- to get me the yogurt that makes the vanco bearable!

Oh, there were a few loads of laundry done somewhere in there, as well. Dishes...

Normally, I'd seek Fred out immediately after a touchy encounter, and not sit on the side of the bed, in the dark. I would force a smoothing-over. I would insist on forgiveness and clarification.

I felt very calm, and very tired. I went to sleep and didn't wake up until 5 am -- a long stretch, for me.

I finished the laundry -- managing to transfer the heavy wet clothes to the dryer by judicious use of my "grabber" and various curses that apparently work as magic words. I sort of managed to fold them -- at least, they occupy less area than prior to my efforts. After being literally thrown into the closet, well, they are, at least, clean.

I fed everyone.

I washed my hair -- no mean feat. Cleaned the microwave, mopped the kitchen floor -- twice. Readied the syringes for the day. Wrote some emails. Worried about some finances (without finding any relief).

And when Fred woke up, I spied out the best time for him to "hook me up," as close as possible to the noon hour.

I was proud, inside, that I could foresee nothing for which I would have to beg assistance today. I was determined to do for myself whatever needed doing.

The Infectious Disease office called mid-afternoon, while he was out washing the car. How was I? Have I been infusing the vancomycin as prescribed? Uh, I am what I am, and yes, of course, I am a dedicated doser.

My blood work from Monday came back all wacky.

The PA is insisting I come back in to have more blood drawn.

Fred has paused mid-task, and looks to be soaking up the sun. My Darling Ruby, the Honda CR-V, is fairly glistening, all dappled-happy. My guy sees me looking out and waves, points proudly to my shimmering car, then turns his attention to filling up the bird feeders.

In my head begins the litany: it's not my fault. i'm sorry. it's not my fault. i'm sorry. it's not my fault. i'm sorry. it's not my fault. i'm sorry. it's not my fault. i'm sorry. it's not my fault. i'm sorry. it's not my fault. i'm sorry. it's not my fault. i'm sorry. it's not my fault. i'm sorry.

LATE-BREAKING NEWS ON UNCLE KITTY BIG BALLS: He is out of surgery, which proved to be more extensive than anticipated, in that she had to take about half of the associated metatarsal bone as well as the "toe" itself. She also found another abscess on the other hind leg (which was already nursing a pretty severe one...). Poor baby. He has to stay overnight, as they are oxygenating the wound and she wants to monitor the output, etc. He must think that his life on the street is far preferable than the one we have condemned him to... So, tomorrow, we liberate the cat after I donate blood at the ID Dood's Chop Shop.

in lieu of originality....

in lieu of a post dedicated to marlinspike hall and manor fans alone, please allow me to copy the high wit and zaniness that i sent out to my friends and family list last night and this morning.

i must highlight a scientific discovery, however:  dark chocolate seems to be the cure for most illness.  dark, dark chocolate -- low sugar.  sensuous.  you heard it here first.

okay, here are my cut and paste offerings:

#1.  To MDVIP  Go-To-Guy and his hopping nurse, Jalapeño:



HI -- 


I just called yesterday to say that I was going home from X Hospital.  Dr. D felt good about the surgery, did not see obvious infection, removed the spacer, etc. so I am shoulderless on the left.   Dr.B did not feel so optimistic -- seems more worried about the situation in the bone and less about the joint space, and ordered another bleeping PICC line and a month to 6 weeks of intravenous antibiotics.-- daptomycin.


He said I need either vancomycin or daptomycin -- vanco messes up my ears, and I get high liver enzymes on daptomycin, but those are my only choices [?].


I am exhausted and depressed and hurt.... BUT if we had not been able to stop the CRPS spasms beforehand?  This would have been a disaster -- so I THANK YOU FROM THE BOTTOM OF MY HEART for helping to get those stopped.


We have to make numerous trips back and forth to Dr. B's office and Fred is unhappy.  Five minutes before we left the Manor Monday to check in for surgery, he told me he was not going to stay with me after surgery, and "so what should I do with your stuff?" [like a *wheelchair*]  I made him leave once he dropped me off, because all I was getting was more ADHD/PTSD stuff and I couldn't take it anymore.  So I went into surgery sobbing like a nincompoop and he didn't show up until 4 on Tuesday, just in time to leave the hospital... I don't believe he remembers doing or saying any of that stuff on Monday.  It's amazing, infuriating, depressing, scary, and it makes me very lonely sometimes.  But love is miraculous, and on the way home he stopped of his own accord to get me some chocolate.  Sometimes buying your partner chocolate is the biggest "I love you" you are gonna get.


This time, though, even if he has to lose it for a little while, I am okay, I am not febrile and falling down!  It's time to take care of Fred for a bit.  And ManorFest is now just weeks away.  We are thinking of submitting the film of this surgery to the Sundance Festival Competition, Cannes, and have a preliminary showing here, shown on the outside wall of the Labyrinth -- which is now big enough to serve as an IMAX screen.


Okay, well, let me get busy trying to see what life without a shoulder is like!  So far, I haven't even had the guts to look at the wound but Dr. D seemed very pleased.


You all are wonderful.  There is no need for home nursing or any of that -- Fred, Bianca, or I (probably me) will do the PICC infusions -- they are just once a day.  If I can get the long extensions put on the PICC do-dads, then I can use my left hand for flushing the lines.  Fun, fun, fun!


Nathalie at G's switched me to 25 fentanyl patches.  Do you think she will believe me that we went through 3 of them in 3 days?  One fell off in the shower on Sunday, they pulled the next one off in pre-op, put a new one on that Hank pulled off, thinking it was tape,  We are a lot like the Marx Brothers.


Much love and appreciation for your prayers and good thoughts.  If I spike a temp or feel really rotten, I will call: you, D, B -- in that order!


Profderien, Gimp par excellence


PS My new least favorite experience?  Being given the paralytic medicine in the operating room before having access to any breathing tube... can you say "panic"?






#2 To Friends and Family, with a few foes thrown in for good measure:



howdy, group --


i am home, but now you can only cry on one shoulder.  you can only put your head on one shoulder... i can't think of any decent shoulder jokes!


there was a divergence of opinion -- the surgeon felt there was no "significant infection," and the infectious disease doctor was more concerned with the state of the bone, not the joint space.  in battles between infectious disease bigwigs and shoulder surgeon bigwigs, it's the "ID" guy who wins.


so they inserted another bleepety-bleep PICC line yesterday and started 6 weeks of daptomycin.  never mind that it gives me liver toxicity, ID Man says "we'll keep an eye on it and if it gets too bad, we'll switch to vancomycin."  vancomycin makes me have auditory hallucinations, and ringing in the ears which can be permanent.


if i did not like and trust ID Man so much, i'd have taken off at high speed in my trusty chair, clearing the way with a cane wielded with fierce precision.


okay, so it hurts like the dickens, i have not had the guts to look at the wound, and we have to be at ID Man's office in just a bit.  so this well-written, well-thought out missive must end.  don't cry...


fred is fine.  i about killed him, but he's fine.  i don't think he has any memory of the crap he pulled prior to surgery, which is just as well....


i love all of y'all, and have appreciated your support over the ten surgeries these past three years!


if you are not an obama supporter, and i suppose that is in the realm of possibility, please still give thanks to the man for giving me the opportunity to buy insurance when all the private companies refused to cover me any longer.  it is still a bankrupting situation, but i am covered and treated well.  i grieve for those who are not.  i am pretty sure that romney would not recognize me as either a corporation or a "person." 


love ya,
profderien, the one-shouldered gimplet

I'm just sayin'

I'm home!*

The Good Doctor ShoulderMan worked his magic on Monday, gifting me with a new left shoulder. He had to do some rearranging but he made it work.

But, of course, this being me (me, under the everloving influence of La Bonne et Belle Bianca Castafiore, both of us under the magic skies deep, deep in the Tête de Hergé) -- well.

Well, on the "deep tissue" stain, we finally found bacteria waving back at us, all gram-positive-y, upbeat, and downright defiant. But, of course, this being me (me, under the everloving influence of La Bonne et Belle Bianca Castafiore, both of us under the magic skies deep, deep in the Tête de Hergé)-- Wait one freaking minute! (The fog of anesthesia?)

As of Day 2, there was, natch, no growth on culture! My Infectious Disease Dood's eyes are bugging out. Bless his bones, he cannot decide when, and how much, to lie to me -- in his mind, I think, he sees this as "managing" the patient.

Because, you see, I refused insertion of a PICC line. They thought I was just posturing, joshing, when I made the declaration before surgery. But, of course, this being me (me, under the everloving influence of La Bonne et Belle Bianca Castafiore, both of us under the magic skies deep, deep in the Tête de Hergé) -- arg! Sorry about that, and je vous prie de bien vouloir m'excuser, too -- covering all my bases.

So, Infectious Disease Dood decides that I need Zyvox, a ridiculously expensive antibiotic that just happens to have serious interaction issues with 3 of my meds, as well as some nasty side effects all on its own. The deciding factor? Insurance coverage, as the $1500/week cost doesn't fit my very tired budget. Anyway... Fred and I think it was all a plot. As in, ID Dood was expecting BCBS -- Bull Crap Bull Skeet of Tête-de-Hergé -- to refuse coverage.

I was held hostage, told I could not leave the hospital without either the Zyvox or a PICC line with trusty i.v. med balls full of vancomycin.

[I know that it's overkill for the vanco hyperlink to refer back to this blog, but it astonished me, upon searching, to find out how much vancomycin has occupied my life and mind, and what it has come to signify. Allow me that rare {raspy cough} professorial moment of recommending a read of Macbeth, Act 5, Scene 5. Wunnerful wunnerful commentary --

Life's but a walking shadow, a poor player
That struts and frets his hour upon the stage
And then is heard no more: it is a tale
Told by an idiot, full of sound and fury,
Signifying nothing.

I'm just sayin'.]

Fools! They didn't know with whom they were messing. Once Fred, all bleary-eyed and pooped, arrived... well, we were hell-bent on leaving the hearsepital. At that point, ID Dood and His ID Minions began weaving tangled webs.

Case managers arrived. All nurses with decision-making capacity suddenly were off the floor, scarfing down lunch. And didn't I wish to order lunch? And, uh-oh, the medication you must take before eating hasn't come up from pharmacy. Let's get a blood sugar and another set of vitals! And then they sneak in: They'll be up to put in the line in about 2 hours, no need to go down to Interventional Radiology, how great is that? [I despise the huge, cold, scary room down in IR.]

They promise a nirvana-inducing insertion, complete with a soundtrack. And lest I scoff, they cite:

PICC the Music and Travel to the Port of Relaxation: Preliminary Results of the Effects of Music on Perceived Pain and Anxiety During the Placement of Ports and PICCs
Journal of Radiology Nursing, Volume 26, Issue 2, Pages 61-62
C. McDaniel, M. Burkett, M. Cormier, J. Duvallm, S. Davis, L. East, G. Gilmer, N. Mahaffey, M. Moran

Giggle.

We left. Politely. Give me a call when you all figure out the antibiotic situation, okay?

Amazingly, BCBS of Tête de Hergé decided to fork over the money and my pharmacist, who inexplicably informs me that "[i]t's like déja-vu," promises that I'll have these ridiculous little white tablets by noon the next day.

My BCBS policy, for which I pay $1328/month [Remember: my (private) disability income is a whopping $1996.20. Without that luxurious twenty extra cents, all would be lost!] -- My policy dictates that I pay for medications and then receive reimbursement of whatever they think arbitrarily fair.

So what a hoot it was to have Discover Card's Fraud Unit calling me, all breathless. Did I know that a $3030.00 charge was just made at the nearby Huge Grocery Chain? That was for a mere 14 days worth, ID Dood suggesting I buy the Zyvox in 2 wk lots, in case I need to stop it for some reason or other. Anyway, to the inquiry about the charge:

"Yep!" said I.

There was a tremendous pause. It was absolutely KILLING the woman on the other end of the line to not be told WHAT I had bought. So she rephrased the question, and, on cue, reiterated the pregnant pause.

"That's right!" I crowed. Her frustration was now palpable.

Why not give her something to liven up the day? Let her imagine an elegant late dinner of lobster and caviar, un petit souper à la parisienne [or A Family of Sans-Culottes refreshing, after the fatigues of the day]. Just a little casse-croûte thrown together by a retired French prof whose purchase habits extended to extravagances of generic yogurt and diet cola. Okay, okay -- I also splurge on almonds and good coffee.

By the time the credit card gods were appeased, the antibacterial troops put all in a ducky row, my clothes 'n sundries put away, urgent emails answered, ablutions completed, phone calls returned? I truly felt like shit. I was febrile to the tune of 101 degrees, sweating, and hurting like the proverbial Dickens ["Fan the sinking flame of hilarity with the wing of friendship; and pass the rosy wine!" -- ummm, any excuse for passing on my favorite Dickens quote].

Alas, poor Yorrick (sic), a quick and easy search about the origin of the phrase "hurts like the dickens" reveals the following:

Posted by James Briggs on December 18, 2001

In Reply to: Re: Hurts like the dickens posted by R. Berg on December 18, 2001

: : My son said this at supper tonight........."It hurt like the Dickens". We wondered if any one knows the origin? I have also heard "scared the dickens out of me". Any enlightenment would be appreciated.

: From the archives, here's a response to the same question.

: Posted by ESC on January 12, 2001:

: "Dickens" is a euphemism for "devil" as in "'what the dickens,'.an
expression common centuries before Charles Dickens was born, having been used by
Shakespeare in 'The Merry Wives of Windsor'." "Morris Dictionary of Word and
Phrase Origins" by William and Mary Morris (HarperCollins, New York, 1977,
1988).

It may be an altered pronunciation of "devilkin"

En tout cas... since then, it's been a topsy-turvy time but anything beats being in the hearsepital. And, thank goodness, we only have to visit ID DoodLand once a week versus the usual three or four times.

My MDVIP Go-To-Guy? He opined in an email: "I'm glad it's over and done with. We are all a bit skeptical that this will take care of everything but please try and keep positive thoughts and prayers as we all are trying to do." I have noticed that since his switch to MDVIP, he communicates much more freely and makes frequent reference to prayer, saying that I am being kept in prayer. At first, I was somewhat taken aback. Now? I am thoroughly appreciative and almost virginal in the prose with which I write him.

However, I will visit Holy Ruin on the first person to suggest removal of this prosthesis.

I'm just sayin'.

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

*graphic of huge mouth courtesy of BENBENEK BLOG -- from an entry which consists of the following:

I’m just sayin’…
I’m pretty tired of people using the phrase “I’m just sayin’…”

'The Fuglies Come Home to Roost

It all started in the middle knuckle of the right hand (the one on the left!). Note the almost identical lines where redness and swelling begin.  The left hand, after such assiduous mimicry of the right, is now almost completely cleared.   The right remains as red, perhaps even over more area, but less swollen.                                                                                                                                                                                                                                                                                              

These next two photos involved some finger-pulling (insert childish fart joke here). You can see the relative health of the index and thumb versus the other slacker fingers.

Here is the huge and nasty right foot.  It's much more red than purple, in spite of the photographic evidence, and it hurts. A. Lot.

I keep asking that it be popped, drained, deflated, or made to become smaller in any way possible, and am universally SNICKERED at, in response.  Instead, I've been put on intravenous vancomycin -- which was working -- then switched to clindamycin, then switched to keflex and bactrim, then put back on intravenous vancomycin -- which was working -- then was taken off ALL antibiotics -- all in the space of ten days.

The fetchingly figured grooves come and go in the rich rhythm of swelling, deflation, swelling, deflation...  As my sister K adroitly reminds me in her emails: "stay tuned!"

© 2013 L. Ryan

Nothing Grows

Yesterday's outing involved the first outpatient visit to the Infectious Disease doctor's office and infusion center. They were incredibly busy, having to fit five days of appointments and procedures into three.

The drill is to see the doctor or PA, then have a vancomycin level and other blood work drawn, and the PICC line dressing changed.

The following day, Fred drives back to pick up the "medicine balls" full of antibiotic that are correctly dosed for the week.

This morning, one of the nurses called to say that we have to go from a once-a-day schedule to every 12 hours because my vancomycin level is very low. We chose midnight and noon as it complements our outrageous lifestyle.

The kicker for me, though, is that my white count is 17,000.

The ID doctor said yesterday that if the pain does not let up in my right shoulder -- from which the prosthesis was removed and a cement spacer put in back at the end of August -- that he was going to recommend operating *again* and removing the spacer. I had a temp of 100.5 -- I stopped checking it when I got home from the hospital -- thinking, dreaming, of smooth sailing.

My cultures still have not grown and he finds that somewhat ominous -- to him this means either a rare bug, fungus, or TB, though the fungus and TB should not have been so very difficult to grow. He has asked the lab for 5 more days.

Where and how did I pick up a rare bug -- in my bones, no less? My understanding of the immune system does not seem to be growing, either. No, I have begun to cling to simplistic notions.

Wherever and however this happened, I hope I had a good time.

As always, more props to Fred. How much can he take? What can I do for him? Does he think of me and wish... well, wish what any normal person might wish?

Ce Temps Majuscule

I hope you have enjoyed the hiatus of posting here at Marlinspike Hall, deep, deep in the Tête de Hergé.

et la seine? elle est toujours belle, elle. malgré moi, elle l'est.

The silence is squashed. I was discharged yesterday afternoon, and while still not quite settled back into home life, Fred and I are slowly finding answers and sly techniques to get me and us through this... Time.

Ce Temps -- Majuscule.

Unfortunately, my left shoulder prosthesis is not back with me. Heart/San Francisco. Shoulder/Tête de Hergé. You can't always get what you want...

Surgery on Monday went well, in the sense that the orthopedic surgeon got me through it in great shape and did what he had to do, with panache and one arm tied behind his back.

He's very talented, and somehow "more" than a specialized surgeon -- meaning no disrespect to any other surgeons out there. Most of the orthopedic surgeons I have met are intensely disinterested in the "medical" side of my care, to the extent of neglecting it. Not so with ShoulderMan. He is on top of things and looks a bit askance when I bring up medical concerns. Still, given that *he* is the anomaly, the practice of doublechecking will not fade away any time soon.

Je reviens... Monday, late afternoon, in the hush of the surgical theatre: The prosthesis looked pretty good to him, as did the surrounding area -- not great but not nearly bad enough to explain such pain and dysfunction. He was about to wash it out and close me up when he decided to further check out the sturdiness of the prosthesis. It came loose too easily, so he proceeded to "ream" the shaft of the humerus -- as any talented ShoulderMan would do.

"It exploded with pus and gunk."

"Gunk" is a technical term and if you don't know what it means, well, I don't have time to walk you through Medical Terminology 101. Look it up. Live and learn. Walk and talk. Rock and roll.

The Christmas Mystery? Nothing will grow on the culture plates. Nothing. They are able to get MRSA from zeee nares and zeee skin -- but as for the actual Pus and Gunk? Nothing.

I confessed the pain of the left hip and the former right shoulder -- so they wrapped me up in a lovely off-the-shoulder yellow dress, a bit on the sheer side, with a lovely pair of blue gloves that gave my look the needed *pop* and off we went to interventional radiology in an attempt to aspirate yet more fluid. More Christmas Mystery, but perhaps the pains there can be dismissed due to bone-on-bone contact in the hip and overuse in the arm.

But my Infection Sensors are blipping and bleeping and splurching all over the doggone place. Still, there is nothing that can be done right now. A normal person would probably decide to relax and try to salvage the holiday spirit.

Cough.

We are throwing daily infusions of vancomycin at the invader(s). Six weeks of infusions through the PICC line. (If this were a freaking Gratitude Journal? tee hee! the position of the PICC line is sooooo much better than last time! and the roly-poly plastic balls of vancomycin? why, they're all gold and silver-like, as if jesus came down and gave a fluffy baby kiss on the cheap china plastic and poof! them balls, they turned into holy ornaments! poof! tee hee!)

Just like last time.

I am incredibly grateful to Dr. ShoulderMan, his PA, and his SuperDyke nurse. This does NOT go without saying. So be sure to say it.

The hospital staff? Not so great -- but as the PA said, the solution to that is quite simple: "stay out of the hospital." Wiser words were never said.

We posted signs that said "Please do not touch my legs or right arm without asking permission. I have CRPS Types 1 and 2. It is painful. Thank you."

Yes, you got it! It was like issuing a freaking invitation: Please touch my arms and legs -- pat them, swat them, stroke them -- Because when *you* do it, it doesn't hurt at all!

Anyway, I am home -- in lots of pain, extremely depressed, and challenged -- in those basic ways that ought to be second nature. Don't make me break out that gosh-darned Gratitude Journal shit. I am alive and not in a nursing home.

Yet.

There are people who care, still. Which amazes me.

When did I begin to hate myself?

A great big thank you to Dr. ShoulderMan and staff, the ID people, and All the Intrepid Nurses.

Most of all... my Fred. Dancing around my hospital rooms -- snoring in their corners -- bringing me a piece of pecan pie under the frowning visage of the Diabetes Dominatrix -- enjoying the shows on Animal Planet that we don't get at home (even if the lion gets the baby antelope) -- helping me brush my teeth, letting me pull on him so as to sit on the side of the bed.

And Fred never laughs at my bedhead.

Which makes feeling suicidal a despicably selfish and amoral impetus.

Thank you, and good night!

Okay, first off? I don't even recognize the preceding two posts. I am leaving them as "published drafts" because I do discern a barely familiar intent from which something might be salvaged. Not tonight, however.

I finally managed, through the magic of pharmaceuticals, to string together a three hour nap. The difference in mentation is remarkable! Several times, my own snoring almost roused me but I fought off the urge.

The medical folks who people my world are wonderful and why I do not remember their sincere dedication to helping me, I don't understand. Some of it has to do with constantly second-guessing myself. Some of it has to do with trust. Most of it is some sort of overblown pride.

Fred has been having A Day. That means -- in La Bianca shorthand -- that Fred is struggling with all that he must do versus the imperious demands of ADHD.

We needed to leave The Manor -- and that means through The Spikes and across The Moat -- at 11:30 am. I woke him in dulcet tones at 10 am, using naught but tender terms of endearment. Even so, he refused to exit the warm bed until I had furnished coffee and two perfectly cold slices of pizza pie. Finally opening both eyes at once, he ambled off in skips and hops across the cold 16th century stone paving and the fancy linoleum -- Welsh deo gratias tiles -- that leads the way to his office, where he plops down in front of his computer. This does not bode well for a timely departure, plus he is mumbling something about having my Go-To-Guy Doctor, now known simply as The Boutiqueur, learn what it feels like to wait. A noble sentiment in some farflung context, I am sure, but not in the realm of our experience with The Boutiqueur... and certainly not a position Fred has any right to adopt!

We were cooking with gas but with no food in sight.

At 11:22 am, Fred fairly flies across my field of vision and the knot in my stomach relaxes -- until I hear him cursing and see envelopes and other scraps of paper swirl upward in small vortices from the oddly planed oak wardrobe. There's nothing like tornadoes in the bedroom.

We have the following conversation:
Me: Whatcha doin?
Fred: What does it look like?
Me: We need to leave in seven minutes.
Fred: I am doing something important.
Me: Can I help?
Fred: No, you can't help.
Me: Well, at least tell me what is wrong...
Fred: I cannot find my VISA bill.
Me: Is that something that absolutely has to be done in the next seven... no, six... minutes?
Fred: {glares}
Me: Maybe I can help you find it when we get back over The Moat this afternoon.
Fred: {glaring} Fine. [He grabs a pair of wide-waled peat-colored corduroy pants and a mustard-colored denim shirt and sprints for the bathroom. Whew...]

Humming and packing up my Stuff, I hear the shower start. Between his putty skin, the peat pants, and the mustard shirt... I hope his colors run and smear.

We got there with five minutes to spare, although that included a brief stint between two tankers while the Fredster ate some of the aforementioned pizza pie and steered, if it can be called that, with his knees.

The Boutiqueur is now back in charge of my "case." We put our pointy heads together over the minutiae of my bone and joint infections, over the lacunae of information identifying the offending pathogen(s), over Fred's level of frustration, and over my bossy bitchiness.

He fears the overuse of vancomycin -- I am on my second six week course of receiving it via the PICC line, and they just hiked the dose to twice a day, even though my trough level was "normal."

He agrees with InfectiousDisease Man that the spacer impregnated with antibiotics that was inserted in August is now nothing more than a germ magnet and ought to be removed. (My index finger was wavering and waving in the air at that... but my lips seemed to be glommed together with pastry cream.)

My WBC count is 16,500. The CRP is still elevated (and the sed rate still NORMAL! How utterly odd...). No fever in the office... but back at the ranch, it shot up to 100.6.

It felt great to hear him think out loud, which let me relax, reassured that someone with plenty of brain power and compassion was there so that I could check out and put my resources toward something recuperative. Like a nap.

He has a notation in my voluminous chart (something I find very embarrassing) that when given things such as Ambien, I do NOT sleep and report "feeling weird." I do not recall this but he nods sagely and wonders aloud if there might not be something already in my "arsenal" that might work well to break the cycle of insomnia. We hit on amitriptyline and so I will try adding 100 mg tonight.

[Note that on the hint of a promise, alone, I was able to grab three hours!]

Ruby the Honda CR-V flew down the road -- zoom zoom zoom -- and I visited for a few minutes with Dr. PainDude's PA, who then gifted me with the month's worth of pain medicine. She used to work for the brother of my OS, and regaled me with funny stories of their apparently legendary antics.

Tomorrow? InfectiousDisease Man, blood draw (unless my PICC will give as well as receive, which it would not last week), a hair trim, and home.

I don't feel very hopeful when I look at my medical situation -- but I respect the hope I have seen in other people throughout the day -- and I love my Fred, and acknowledge his frustrations as being something seen only in people consumed with the rigors of breathing in, breathing out.

I am very lucky.

Thank you, and good night!

Be/Loved

Hello, Dedicated Reader Base!

I was discharged from the hospital yesterday afternoon, to the great relief of everyone involved, particularly the hospitalists and nurses. When I am a little stronger, a post on hospitalists and certain types of RN will be forthcoming. I am pretty sure that the three hospitalists (one an intensive care hospitalist, one a pulmonologist, one a whiz-girl at internal medicine) were not "Happy." And I am positive that Happy the Hospitalist (The Happy Hospitalist) would not recognize himself in the performance of these particular three colleagues.

Anyway, the short version:

Surgery went well, although we failed in our goal of putting in a full shoulder prosthesis because the orthopedic surgeon found more infection... that continues to *not* grow in petri dishes. Later that night, I twice went into what we will call respiratory distress -- O2 sats dropped from the low 90s to the 30s within 5 seconds. I learned the meaning of gratitude at that moment, because my nurse happened to have just walked in the room. I mean, being on continuous monitoring doesn't do a whole heck of a lot of good if no one is watching! She stuck to me like glue until a Super-Duper Respiratory Therapist arrived, who then rescued me a second time. We were on our way to Intensive Care before the third episode even had a chance. I don't remember the third go 'round, anyway, as I was, if you can believe these medical types, "obtunded," and they proceeded to tube and then attach moi to a vent.

Yadda yadda -- I'll spare 'ya. [EEGs, CT scans, MRIs, echos, blood sugars and more!]

After some mis / management -- that wasn't all that big a deal, so long as you weren't the patient -- and a few days time, I am home. With the infection still blooming, and the explanations still lacking. We're doing i.v. vancomycin through the PICC line again.

The Poor Fredster. He is sleeping in this morning, and I am so glad. He is lovely, have I told you?

The Heimlich Maneuver for Cats

What a way cool moment the felines and I shared early this morning!

Unable to sleep, I was serving up breakfast at 4:30 am and boiling water for lime sugar free jello (to be enhanced by a nice celery dice) -- yes, I *am* an adept multitasker, thank you for noticing.

During a pause in the action, I was reviving myself with a bowl of bran flakes, tootsies stretched toward the huge stone hearth in this, one of Marlinspike Hall's largest kitchens. We keep a fire going year round -- there always seems to be a bit of a chill here, deep deep in the Tête de Hergé.

Something made me look over to the Kitty Chow-Down Area, where I saw Dobby in dire straits. His entire body was convulsing in an attempt to breathe, his paws fighting some invisible enemy, theft of his oxygen -- all without making a sound. Marmy was sitting ramrod straight by his side, looking alarmed. (Yep, that was the extent of her maternal reaction.)

I careened over to poor Dobby, popping a wheelie on the way, hair flying in the breeze of my own speed. I scooped him up, flipped him over, screamed from the pain in my arms and shoulders, and performed a perfect (if I do say so myself) rendition of the Heimlich Maneuver for Cats.

What a sweet moment when a big glob of goo flew out of his mouth--Ptooey! and Splat! -- onto the fridge door.

Marmy went and sniffed it, sashaying her little fluffy butt.

Dobby leapt off my lap and without much of a pause, resumed eating.

Oh -- an update on the condition of Our Gimp, Uncle Kitty Big Balls. The "toe" of his right rear paw was amputated, and the vet also had to take a large bit of the metatarsal. Another abscess spontaneously opened and drained on the thigh of his left rear leg, to go along with the one on his "ankle." He has drains in each leg and a huge bandage (dry on wet) over the operated site.

The Fredster enlisted my help Friday night as aide to the Changing of the Gauze, but had several ADHD moments that made the situation somewhat less than stellar. And so, last night, per his assinine request, I did *nothing* to assist.

And so it was that soon after he began, Uncle Kitty Big Balls sank his sharp little teeth into Fred's big toe -- punctured it top and bottom, and did not extract his little dental tools cleanly, either. Unfortunately, there was almost no bleeding.

And so it was that Fred had to call the local Marcus Welby, MD, drive to the pharmacie and begin a round of Cipro... I think he was supposed to update his tetanus shot, too, but hey! I had no questions to ask, no bright ideas to share -- per his own instructions.

No, I am not happy it happened... just pissed that he has to be so stubborn, to his own detriment. Easier on him, easier on Uncle Kitty Big Balls, and a nice change of pace for me if I even do as little as tuck the little dude under my good arm so that reaching that back leg is less fraught with danger.

Poor little guy, we gave him the last of his pain medication last night -- and he is obviously still in considerable pain this morning, carefully holding that heavily bandaged leg away from all surfaces.

I'll have to recount the tale of my heroism and Dobby's near death experience to him, distract him a little. Even after the Great Toe Attack, it is clear that Uncle K. is a pacifist, a gentle soul.

Lordy, I hope that toe doesn't get infected.

Fred has joined the "BID" antibiotic dosing routine -- at noon and midnight, I am hooked up to vancomycin, Uncle Kitty Big Balls gets his liquid amoxicillen, and now, Fred, himself, has to take his twice-a-day Cipro!

Behaving My Way To Happiness

I feel absolutely ill this morning, and hence, this may be the day for me to give the surgeon a call. The Infectious Disease PA thinks I have already done this... but I've been too afraid. Stupid? Sure. But that's my stupid reality! My best option may be to email his nurse and lay it out for her, see if it's okay to wait until June 9.



Dick Cheney going "head-to-head" with Obama in dueling speeches on the "war" on terror? There are so many things that are just plain wrong with this scenario -- I don't even want to get started. Cheney appears delusional to me. Specifically in terms of "grandeur."



Guantanamo -- I support Obama's plan to close the effing place down, but I understand the Congress' response that a clear end game needs to be posited first. Do I think that is really the problem with passing the bill clearing the needed bucks for the much overdue eviction? No. It seems to be a case of "not-in-my-backyard." As in: the remaining prisoners need housing but them raghead terrorists aren't gonna live in my state, no sir. Earlier, as in last week, Dems were upset that Obama intended to continue using the military judicial system in some of the more clearly hardcore cases. Too harsh, too much a continuation of failed policy. That's a heck of a disconnect.



"Disconnect." One of the newly bandied-about terms we've all come to love. The old switcheroo from verb to noun that hip English-speakers love to effect.



My Infectious Disease Dood presented my case to a group of ID doctors last night. I fully expect to arrive at his office, my second home, and find a cure a-waiting. Something like a shot of Cure-All in the booty to resolve all ills.



But Madame! Were you not just recently at the Infectious Disease Dood's place? Why are you going back for the third time in a freaking week?



Because the Uber They phoned yesterday to say that my labs from Monday are all wacky and they desire more blood.



After I donate, we are going to pick up the brave and singular Uncle Kitty Big Balls, who ended up having major surgery yesterday, losing not just a "toe," but also about half of the associated metatarsal. Puss, diseased bone... apparently, he's quite the little copy cat.



I don't regret spending money to help my animals regain their health, but in the space of two weeks, this wee one has incurred a small fortune in vet bills. We didn't even ask how much this latest surgery will be. Oh, and she found yet another abscess on one of his back legs. It is clear that The Fredster took his infected self in just in the nick of time.



Drew Peterson. No celebrity would be the best response -- no Dr. Phil Chase for Ratings -- no Entertainment Tonight. Just put the man under the jail... forever.



Well, I have to wake up my beloved chauffeur in a few minutes, and I'd best use that time to wash up, get dressed, make him some café and whole wheat toast. The toast is a compromise. While I was in the hospital, he started an awful trend in breakfast food -- two bologna sandwiches. I was shocked to even find that stuff in my fridge. I am not sure what he was putting on the bread, either -- I suspect mayonnaise. Ugh. {waves of nausea}



Ah, it is 8:36 am and my temp is already 99.9. MwaHaHa! Oh, God, what to do when vancomycin doesn't work?



Okay, shaking it off. Behaving my way to happiness. Be the change I wish so to see. Later, Doods and Dudettes.



Oh... please enjoy this latest photo that I have pilfered from one of TW's blogs. He is a canyon man, a lovely man, and sometimes a sister just needs a brother. What drew me were the tonal qualities. It fairly hums.




TW captions the series of images which includes this one with:

I am
fated
to journey
hand in hand
with my
strange heroes
and to survey
the surging
immensity
of life,
to survey it
through
the laughter
that all
can see
and through
the tears
unseen
and unknown
by anyone.
--Nikolai Gogol
(1809--1852)

Obéissance: Protect the 'nads

The reason for this repost?  Franchement? The cartoon.  Because that's pretty much how I'm feeling these days.  For non-French speakers, it goes something like this:
"You can do anything you like...
So long as it's what I want you to do."

I particularly dislike having to display "obéissance" when it concerns my body, because that means it upsets Fred's status quo and his upset status quo can be Hell to live with.  It takes a lot of his time and most of his dwindling reserves of patience to ferry me back-and-forth to the doctor, sit in ER/ED waiting rooms, field frantic phone calls about forgotten rechargers for phones and other electronic devices.  [Don't tell me to go wifi unless you're willing to finance the endeavor.]  

I'm supposed to email by very nice HMO doctor tomorrow to report on the status of my infected foot. [Because no one, apparently, gives a good goddamn about my right hand turning into a swollen claw!] What to say, when facing a 3-day weekend and people more interested in getting to the various Folke Faires around Tête de Hergé than interested in butt-ugly hands and feet?  Truth be told (and that reserved just for you, Dear Readers!), the foot is bright red and the infection returning to its original volcano-like presentation (Is that good? Bad? Will it burst open and solve its own problem?)  Further truthes?  My right hand is swelling, hurting, and fast becoming useless.  Despite the difficulties in assessing temperature in a CRPS patient, to me, the offending middle knuckle, which began this hand boogerishousness is quite warm.

So "obéissance" is again in question.  Could this foot-and-hand disease be put off until next Tuesday, when the Force of the Medicos will again be at full power? Or should I submit to the standing offer to go back in the hearsepital for i.v. vancomycin, and a possible PICC line.  Let me elaborate on what may seem, to you, an easy choice.  Once the definitive switch back to vanco, it means Fred will make at least 4 trips a week to an infusion center, and probably for at least a month.  This at a time when we are sick to death of things dealing with sickness.  

There. That makes my rationale for posting this past pithiness from May 2009 clear as MUD!  You're welcome.  And it's your forebearance, Dearest of Dear Readers, that endears you so to me.  I think there will be another brief hiatus in posting... The Truth will out, after all -- because it is Truth which ought to drive all expressions of Obéissance.

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

A mélange, a mix.

That's all I am good for at the moment. But, as most of us are, I am open to suggestions.

It looks like Uncle Kitty Big Balls is going to be a cool member of The Family. A very poised little dude, ugly as sin with his fur shaved off, he saunters his maigre self around The Manor every few hours, shaking what little butt he has much in the manner of The Marmy Marmot. When the two of them vocalize, it's a hoot. She goes: "Ack-ack-ack!" He mumbles back: "Ark-ark-ark!" You'd think they were inveterate cigar smokers. Which, of coursed, is just impossible.

What's wrong with you?

It's a national day of prayer, privately. Some of my friends think there is an "issue" to visit in this; I do not. Unless it is an extremely slow news day -- something that the U.S. citizenry might well enjoy for a change.

ShoulderMan's PA, Bountiful Bob, was, as always, very kind yesterday. {I, feel, very, attracted, to, the, comma.} One of their techs alternates between freaking me out and being a regular intrigue. So it was highly uncharacteristic for him to greet me by saying, "Are you all right? You gave us quite a scare last week..." He kept saying it, bless his bones, reminding me that being near death is the easy job -- Attending to the situation should not be envied. On the other hand? The x-ray tech was unhappy with me when I refused to assume the position for one of the shoulder views, and therefore created something ex nihilo -- and five shots later, she still had not succeeded in her approximations. I had dollar signs flying by my eyes. Bob stood with furrowed brow and dark, unreadable films tucked in the lightbox. I pondered the probable extra heft of my bill and inwardly rejoiced at having my stitches out, the promise of a shower in my future, as soon as I can manoeuver my dainty dancing feet and sufficiently SaranWrap my PICC line. We've never been able to keep the line dry -- it is put in the non-operated arm, of course, meaning that it is in the only usable arm and is therefore subject to being hit with water.

Fascinating.

Okay, so I was browsing TW's blogs, and over on X, he posted this hilarious and touching family moment:



During the night, I was doing one of my favorite memory exercises: visualizing every house I have ever lived in, every school I ever attended. The various digressions that peel off these onions are wonderful, and exacting. This time, I ended up stuck in an elementary school in California, where I was the Undisputed Tether Ball Champion of the World. Second grade.

I remember the Second Grade primarily for two reasons -- beyond my sporting prowess:
1. I was punished for reading, and,
2. Our teacher kept sending us home with bags of guppies, which eventually pushed my stepmother over the edge of reason.

The reading punishment? We had finished some sort of in-class writing assignment, probably working on our "cursive," as I recall this teacher was a maniac for crap like the loops of one's els. When finished early, we were supposed to put our heads down on the desk on top of our folded arms. Well, yawn, y'know? So I had stashed a book -- and not just *any* book, but Harriet the Spy -- inside my desk. With my head down in obéissance+, I began a new chapter. Next thing I knew, this stellar educator was whacking my palm with a ruler. I don't recall if there ensued any sort of [parental] conference, or sustained punishment -- all I know is that I felt loved by my stepmother, herself a teacher, and that she defended me.

No, not so much like a lioness, more like a proper stepmother. You know? The roles felt well-defined, and that's a pretty rare thing in blended families.

Defended for reading. Punished for reading. Whacky.

A day later, my sentiment, like the worm, turned. At supper -- spaghetti and meatballs -- I swallowed a huge ice cube, and it went down the wrong way. I was choking. Unable to speak. She laughed at me. Then she laughed at my anger at being laughed at. One of those Mother::Daughter special moments. Like the day I first plucked my eyebrows -- at 13, I think -- and she, sipping on her drinkie-poo, reacted by saying, "Oh no! Your one good feature -- gone!"

She had this habit of coyly dipping her pinky-finger into her drinks, and sucking on it, making eyes.

+Obéissance: L'obéissance ou soumission à l'autorité est l'une des formes de l'influence sociale. En psychologie sociale, on parle d'obéissance quand une personne adopte un comportement différent parce qu'un autre individu, perçu comme une source d'autorité, le lui demande. L' individu dominé reconnait à une personne, ou à un gouvernement une valeur certaine. Lorsque cette reconnaissance est faite, l'individu passe alors un accord tacite, un consentement avec le supérieur qu'il a reconnu; Il échange sa liberté contre la volonté générale d'être assuré et sécurisé.

Les recherches les plus connues sur l'obéissance sont dues au psychologue américain Stanley Milgram. Dans son expérience de soumission à l'autorité, il amène des gens normaux à infliger des chocs électriques de plus en plus forts à un autre sujet (en fait un compère, c'est-à-dire un expérimentateur qui prétend être un sujet de l'expérience) qui supplie d'arrêter l'expérience puis crie et se tait, comme s'il était victime d'un malaise. Certains en prennent comptes mais d'autre ne la respecte pas car ce n'est pas une obligation.

A la suite de Milgram, l'expérience de Charles K. Hofling a montré que 21 infirmières expérimentées sur 22 était près à donner une surdose d'un médicament inconnu sur ordre d'un médecin inconnu au téléphone.

This schtuff is fascinating, no? Imagine. In Hofling's experiment, 21 of 22 nurses ready to give an overdose of a med unknown to them --"Astrofen" -- by order of a doctor, who was also unknown to them -- an order taken over the phone, no less! That was in 1966... Rank, in 1976, changed some of the parameters of the study [30 mg of Valium, IM -- and subjects were allowed to interact with colleagues] and stood the results on end: 16 of 18 nurses questioned the orders.

Shocking...









Obedience. Consent. Informed consent. Authority.

Our secret desires.

Obéissance:

A manifestation of obedience; an expression of difference or respect; homage; a bow; a courtesy.

Bathsheba bowed and did obeisance unto the king. --1 Kings i. 16.

I am not able to sleep more than two hours a night from pain that is amazingly straightforward. I have been encouraged to let so-and-so know, as if so-and-so were able to alter reality with a prescription pad.

Anyway, this lack of rest fuels the penchant for mélange.

The cultural anthropology of this cat group that teems around my swollen ankles would fascinate anyone. The wonders of family dynamics, the unexpected likenesses, and the quirky divergence --

Marmy is smug and happy to have her brother ark-ark-ing from beneath our bed; Dobby's brain is clearly spinning as he tries to figure the point of origin for his oddly familiar uncle; and Sammy is hissing and tucking his tail to protect the 'nads.

That's probably what I would be doing, too, were I he.

If I have learned nothing else of value in this life, it is that: For God's sake, protect the 'nads.

O Lord, Hear My Prayer

I find it difficult right now to write anything. Putting cogent thoughts together, or even messy ones, distresses.

Just plain exhaustion and an increasingly pervasive depression.

Today, infectious disease appointments -- to draw a vancomycin "trough" level, get PICC dressing changed, etc.

Tuesday, The Boutiqueur and the infectious disease infusion center.

Wednesday, the orthopods -- stitches out? Some sort of plan?

Thursday -- sleep.

Friday, Hawaiian-Shirted Neuro-Man, a supremely important appointment.

We are infusing every morning at 11 am, though we'd like to edge that more toward noon.

It's babyish, but my throat bothers me more than anything -- it represents air and life, I guess. On the way to the hospital last week, Fred and I pooh-poohed said sore throat. Then, after being tubed, both for surgery and for intensivists' amusement, it was horrible. I sound like a croaking toad. Fred checked it and saw white patches on the side that hurts -- the ID Guy, when I finally whined enough that he actually looked, said it was "an ulcer." Fred rechecked it, saw no ulcer, still saw white stuff. The Bette-Midler-Lookalike Hearsepitalist -- oh, did we clash -- flashed a light on the right side of my throat and chirped that she didn't see anything. I'm sure she didn't.

I asked for throat lozenges beginning on Tuesday evening. They were reordered twice. Never showed up. When The Fredster settled me in bed here in my beloved Marlinspike Hall, deep, deep in the Tête de Hergé, he ran by the grocery and picked up four flavors, all sugar-free. Some lowfat plain yogurt. Feline supplies.

The dead zone in my right lung is back, in spades. ["in spades"?] Technically, I have pneumonia. Thick yellow crap. You are welcome!

The Boutiqueur, from a distance of safety, opined over the phone that maybe what happened was an assault by mucus plug. All I know is that I have reexperienced the breathless terror twice at home when the I-cannot-swallow thing happened. He always tells me it is anxiety.

I don't think so. It doesn't happen when I am anxious, for one. For two, I am fairly insightful about my emotional life, cognizant of schtuff like anxiety.

Back away, back away from the volatile.

Would you believe that the only "washing up" that happened in the hospital happened with Fred's help on Wednesday night? That the bed sheets were never changed -- only a new top sheet whenever I managed to spill coffee on it. Cough. Patient care? What patient care? It was all meds, meds, meds. If Fred hadn't been there, my teeth would have grown brown fuzz.

Hey, maybe that was the idea. My brown-fuzzed teeth were at the center of a grand immunological experiment. I'm just saying.

I made an ICU nurse cry. And not from hurt, oh no. She wanted to KILL me. I kid you not. Is it my fault that she was the person who finally pushed me over the edge? She decided to invent information rather than say "don't know but will find out..." That happened a lot. I consider it lying and, at least, unhelpful to my recovery to be given misinformation. She lied about the echo results, about the monitored bed, about the phone, about my meds, about the palsy in my hand -- but above all? She ignored, and was pissed off by, my frequent frequent frequent requests that she stop-the-fuck touching my legs.

I don't do the 20 out of 10 pain scale crap. For the first time ever, in hospital, at least, I went to 10/10. It felt like every nerve fiber, muscle fiber, was twitching nonstop. My legs burned like dry old wood in a fresh flame. Yes, very Joan of Arc -- nod to Leonard Cohen (and Jennifer Warnes). No, I don't see my battle as kin to her fiery epic; Yes, I find the transcripts of her interrogations and trials fascinating reading.

So, anyway, it hurt like hell. My right foot and leg were caught up in horrible contractures. Every time someone decided to pat my knees, pass a cord or tube over my body, brush me with their humongous booby, it was like an electrical jolt that served to amplify the pain that had already been keeping me company.

I would say to This Weepy Nursey, "Please don't touch me..." This Weepy Nursey would snarl, "I know, I know, you don't like to be touched." Like to be touched? Hell, I LOVE being touched. Ah, but don't go down that road. Let her think I am just some effed-up eccentric.

They all had their ID cards hanging by lanyards around their tiny little easily-snapped necks. Bend over a patient's bed and these laminated thangs, they land on the patient. "But I didn't touch you. Gaawwwddd!" complained This Bitch of a Weepy Nurse. Leaving me to explain about ID cards, cords, tubes, boobies -- sounding like an insane person. Leaving This Bitch of a Weepy Nurse to roll her eyes, and do it again.

"But I BARELY touched you!"

So I had a meltdown. So I called her some sort of idiot in front of a colleague. So I maligned her knowledge base. She had it coming. "You don't have to talk to me like I am an idiot. Just explain it to me," said This Bitch of a Weepy [sobsob] Nurse. "Apparently, I do," was my response.

She actually brought me my standard dose of methadone as a response to the pain arc. When I told her something more immediate and short-acting was called for, she practically threw it at me and I could see "Effing Drug Addict" play across the marquee of her mind. I spared her a recitation of the half-life of methadone.

I take 15 mg of percocet for bad breakthrough pain. Two 7.5/325 tablets. And that's what the pain management service ordered for me in hospital. This Bitch of a Weepy [sobsob] Nurse, however, decided that since they only carried 5 mg tablets, that two 5 mg percocets was the equivalent order. Hellloooo? I tried pointing out that if we tried three 5 mg tablets, we'd be doin' good. But that's too much Tylenol, she countered. Damned if it doesn't come in immediate release form without ANY apap, and at the 15 mg dose, too...

Once out of ICU, there was no quibbling back-and-forth about it. People also had to be told "please don't touch; please ask/tell before touching" only twice or so, and then were kind enough to spread the word. The problem on the floor? Inexplicable! Big old white bandage on left shoulder... But still, fairly hefty "pats" on the shoulder. I never said anything, but felt my pupils explode and the smile on my face freeze into a death mask grimace... That hurt a heck of a lot less than the slightest touch to my arms or legs.

I've got to stop.

In case you don't see it, or get it, or feel it? I think there is PTSD lurking in me whenever stuff goes even slightly wrong in the hospital -- when things go majorly wrong? As Mr. T might opine: "I pity the fool."

It goes back to May 22, 2002.

The final thing that wants to leak out of my fingertips this morning, before trying to clean up this bloated corpse and set off to see the ID folk, is an accounting of how frustrating it is to explain to the student nurse in ICU that the ventilator had been turned off for a trial prior to extubation. "It's breathing for you, sweety!" she kept chirping. I wanted to scratch her face off. Finally, I put my hand on my chest, so that she could see its rise and fall versus the non-activity of the machine. "oh!" she said, and ran out of the room, ostensibly "to tell somebody." Thank God for Respiratory Therapists... I had been started on my "trial" a good 45 minutes earlier, unbeknownst to my caretakers.

See? That kind of thing doesn't matter. Best to forget it. Don't dwell on the negative. Make like a duck and let it roll off your back. Don't sweat the small stuff.

Have you ever had pneumonia, lousy O2 sats, and tried to breathe through a straw, all the while trying to positively impress the People in White with your... vivacity?

All right, next time? I will continue to exorcise my demons, particularly The Bette-Midler-Lookalike Hearsepitalist who tried to kill me with insulin.

I am so grateful for this space.

And I am sorry for making the nurse cry, for enraging her, for putting her down. I am sorry I told her that the ICU needed to do an inservice on CRPS/RSD. I was basically alone, and afraid, and in pain. And stuck back in 2002, when forces -- in the guise of Doctors and Nurses -- conspired to devastate me.

Someone, Anyone -- give me a week, and then kick me in the butt. Okay?

(O Lord, Hear my prayer! Let something treatable have grown in the lab, one of Your smaller creations that wants a more hospitable home.)

Just Sound, Just Noise

ARCHANGEL SAMAEL

While in ICU in February, I hallucinated pretty much nonstop, with a full soundtrack for the rich visual tapestry I wove, ostensibly to force a measure of sense into a nonsensical situation.  The problem actually began back in January, a few days after the first surgery in this series [of what I pray to be three!].

Initially, the issue was confined to my ears and my hearing;  There were no outside actors, no severe yellows or oranges, no vest-wearing flight attendants in lieu of breezy, unconcerned nurses.  Just sound, just noise.

The talented infectious disease folk determined then that Vancomycin was the culprit, given its reputation for ototoxicity.  Also, and I'd forgotten this, I'd had the same reaction before.

What is it like, auditory hallucination?  For me, the bizarre results stem from the meshing of tinnitus and distortion -- with the major push toward insanity coming from hyperacusis.  It translated into the sound of a Paul Revere copper-bottomed kettle in the early moments of its first, hesitant whistle.  It adopted the hushed wheeze of a pneumatic door, closing. [As a gimp in a wheelchair, I have intimate knowledge of AutomaticCautionDoors -- the name meant to be crowed without a breath, but with concupiscence, since I love AutomaticCautionDoors, and I wants me one.]

There was never any confusion about whether I heard things in the world [kettles and doors] or the utterances of people.  The weirdest detail of all this weirdness was that people never spoke with autonomy.  No, they echoed -- they echoed what I said or the verbiage spilling from the television.  When visible, they expressed themselves normally and I perceived them normally.

For example, nurse Juanda [a wonderful clinician, a delightful person] might stand at the foot of my bed, explaining the steps of giving a blood transfusion.  I see her as she is;  I hear what she says, and only what she says, except for the sonorous background of whish:whish and spiky-squeal:spiky-squeal.  The door to my room is closed, a state I try desperately to maintain, for it keeps out the subjects, and objects, too, of my auditory hyperacuity.

Juanda, unfortunately, is one of the worst when it comes to flying out the door and leaving it wide open, leaving my mouth in a Big-O of Oh-No, for now I am subject to the whims of noise in the hall and at the nursing station.

So, although now absent, Juanda's garbled talking to her colleagues mixes with whish:whish and spiky-squeal:spiky-squeal.  Alone in my room, sliding around in that ridiculous bed, I mutter, "Damn it, Juanda.  Why can't you manage to close my freaking door?"

And I promptly hear Juanda (sometimes also a chorus of cohorts) repeat, in singsong style, with laughter, "Damn it, Juanda.  Why can't you manage to close my freaking door?"

There was often another effect, one that is even more challenging to describe.  Maybe you will understand... a sound warp?  No?  How about the wah wah wah of Charlie Brown's teacher?  Better?  Okay, well, take that effect and imagine her wah wah wah as a small portion of my echo -- imagine "damn it, Juanda" in wah wah wah form, but really, really LOUD, and only on one side of your head.  It was confined to my right ear area... and I say "area" because, honest to God, it seemed to come mostly from my jaw.

[Why not be honest?  I sound like a total nut already!]

While it was reassuring to be told that I'd not descended into some snake pit of mental illness, I was scared by the warning that these changes might be permanent.  I became an instant introvert, sucking a bit on my lower lip, and humming.  The cure for Eerie Echos was to simply say nothing, a cure wholeheartedly supported by a weary Fred, who looked on the verge of collapse, and whose body visibly jerked whenever I barked, "Did you hear that?"

They switched antibiotics and the weirdness disappeared.

The experience in February? You, Dear Readers, will be the first to hear about it -- although I did offer a sanitized version to a couple of people.  As caretakers, doctors, and nurses have regaled me with stories of "how [I] almost died," I've been able to piece together the "real" events behind what I hallucinated, with the resultant conviction that reality does not matter.

Here's what happened [and you may debate "happened" within the familiar decor of your own brain]:

There were four angels trying to save my life.  Heavy blocks of concrete, each block bound with orange plastic ties, were attached to my arms and legs.  I was caught in a mesh of girders, spikes, construction-themed stuff, and by caught, I mean, impaled, conjoined, pierced, smushed.

There was, however, no pain.

After a day or so of struggle, the five of us concluded there was no good outcome available, that I would have to die.  It was imperative, however, that my body be set free of the blocks, the shards, the spikes, the nails and bolts and beams.

The four angels said I must be flailed, alive.  The four angels said that I must then be deboned, alive.  [Yes, I am aware of the easy resonances of these torturous words with the state of my health, with my orthopedic prospects, even -- I am warned about the possible outcome of a flail arm, for instance.]

They handled the flailing.
But I was in charge of my own deboning, my own disarticulation.

There was music, lovely music, and interludes during which we all slept.  They kept me comfortable, floating in the air, in fact, by the soft, soaring music that originated in those angel minds.

"Why do you insist on speaking?  Talk to us as we talk to you."

Every now and then, filtered through my hallucination, came the words of the doctors and nurses trying to help me:  "What are you doing?  What are you trying to do?"  Mostly I heard them during the many frazzled, failed attempts to remove the heavy weights from my arms and legs, to understand how they were strapped to me, so that, through some blueprint or other, I could unstrap them.  And throw them.  I remember wanting to throw them.

There was some incidental, ridiculous drama, involving a radioactive blast.  You know, the usual.

The thing was... I wouldn't die.  The four angels were distraught.  I must also have been pretty depleted, psychically, because the story devolved in stark fashion at this point.  That's right, there were firearms and my head was the designated target.

Wusses, the angels.  They said their goodbyes (promising me sight of the Face of God as a reward for the chutzpah displayed in all that flailing and dissection), passed the gun back and forth, talked a good bit about some soap opera, and then concluded that they couldn't do it.

Yes, the hallucination must have been breaking down at that point, because, in addition to hearing the woes of soap opera characters, I had this reported conversation with one of the "intensivists":

Intensivist:  Why are you waving your hand?
Me:  I'm trying to help.
Intensivist:  Help who?  Do what?
Me:  Help them.  Help them shoot me in the head.

My logic was impeccable.  The angels were seated, of course, out in the hall, in shabby collapsible chairs, looking for all the world like almost drunk fishermen in the muddy low water of a local lake.  Maybe the sun was in their eyes.  Maybe they were tired -- some of them had had to leave during the night to tend to other near calamities -- and their vision, as a result, was not so sharp.  So I put my hand behind my head and wiggled my fingers with joy and abandon, hoping that would relieve the angst of having to aim.  Just blow away the jittery appendage dancing behind my curly hair, and all would be well.

The next thing I knew, my eyes opened, and an intensive care cubicle emerged, neat as a pin, full of beeps and alarms, cream colors, and green, with a window looking out on a brick wall.

I said, out loud:  "I got to meet the angels, die, and live, too?  Wow."

I remained crazy for a few more hours, but it was a fun crazy.  One of the cooler angels had promised, should the Face of God thing not work out, some quiet and a pickleback.  That's right, a shot of Jameson's chased by a fine pickle juice, all wrapped up in a plush silence.

whish:whish
spiky-squeal:spiky-squeal

whish:whish
spiky-squeal:spiky-squeal

The various theories?  I had a raging infection -- a large pocket of infectious goo had gone undetected during January's surgery -- a high fever, dehydration, out of control CRPS, jerkjerkspasmspasm, all served up by two falls on the cold, hard bathroom floor.

My favorite part of the fairy tale?  Because the hospitalist could not be bothered with the list of meds in records dating from all of two weeks prior, because she didn't decipher the careful etching on my MedAlert necklace (particularly the notation of adrenal insufficiency), because no one consulted the medication list in my wallet (nor the CD-ROM of my medical history, one of the benefits of frequenting MDVIP), I went without stress dose corticosteroids, methadone, Cymbalta, and other pharmaceuticals whose abrupt withdrawal cause... hallucination.  Among other things.

I've spared you, and myself, Dear Reader, with this abridged account of the goings-on.  There was nary a mention of how I emerged from those flailing and deboning sessions convinced that I had but one eye, and no nose.  That my surgeon had shortened my feet.

When they transferred me to a regular room, I was convinced that we were rolling through scenes from a Cirque du Soleil performance.  Oil paintings of hospital founders and benefactors winked and nodded as we passed.  Workers clad in pink and blue scrubs did quick little dance steps, dipping their chins and eyes in the demure pleasure of movement.

And when the glass of water and leftover iced tea from a missed lunch turned out to be only water and tea, not Jameson's, and not pickle juice, I was able to smile.

It comes off as sounding like profundity, implying great meaning, these stupid little stories.  People worry to hear the strange details, not understanding that clues from the environment played as much a starring role as the weirdness of my psyche.  The way I choose to see it, my brain's job is to make sense of things.  Increasingly, the means by which to do this are in short supply.

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.