postoperative poopy-doops, and so on, and so, forth!

dear kind reader[s],

here's a [very] rough breakdown of Things Since Surgery, as composed earlier today [friday]:

one of the first things i heard while coming around was some news broadcaster calling newt gingrich "a nimble politician," so i knew i was either in hell or awake. 

here's a quick summary: 

the prosthesis was very infected, confirmed by frozen section during surgery
but whether it will grow in the lab is anyone's guess [if you have celestial influence, that's the wish to use it on]
he had to split the bone, unfortunately
he put in antibiotic laced spacer made of what's called "surgical cement"
i arrived in room from PACU with NO i.v. access and that was surely fun
on my birthday, i got a PICC line and a second regional block -- woo hoo!
the spasms arrived, along with dr. b, my favorite infectious disease doctor
dr. b, too, wants YOU to pray for The Crud to grow in the lab
spasms and pain brought me to my first ever declaration of 10/10 on the pain scale
needed 2 units of blood
they got permission, over my protests, to use my left forearm for the BP cuff during transfusion

i protested because that could cause CRPS spread in a freshly operated limb

and... the CRPS promptly spread
i was devastated
asked my ortho and dr. b to send me home so i could get pain control
they agreed
fred got to the hospital after the last drop o'blood, riding my wheelchair into the room like a knight in shining armor
we needed all kind of help to get my massively swollen and oh-so-fetching body folded into my wheelchair
[did i mention that the chair is on its last legs? that we were hoping the new one would arrive before surgery?]
fred had kept it nonstop on its charger
so, of course, we turned on the power, and... NOTHING... DEAD... KAPUT...
we got home but it was not pretty, nor comfortable
fred has been challenged and we are just trying to survive
we had to be at dr. b's place the next morning at 10
we made it... got re-trained in PICC line administration of vancomycin
by the time we got home, nerves and tempers were shot
but it's been uphill since then
fred forwarded all your email replies earlier today
and he was so wise to do that - as it gave me a wonderful lift.
he thanks you
i thank you
i love you!

I left my shoulder in San Francisco [repost]

this is a repost from the summer of 2008, and i had just had the nuts-and-bolts of the upcoming surgeries explained to me -- you know, spacers and stuff!  well, apparently, i took temporary leave of my senses, in a very lingual way...

La Belle Bianca Castafiore, ici --

Zee Retired Educator? She is, comment le dire? She is settled up, I think you say. She will be tossing the Pity Party soon, yes, yes.

Il se peut que... Er, it will be necessary that she will lose the faux shoulder for a period of the time. This? This she can not arrive at wrapping around her little mentation.

But I am knowing her since long time, long distances, and she? She will wrap around her little mentation, bien sûr. Elle va accepter les changements que son état de santé a rendus nécessaires. And she tosses the good Pity Party also as well, too, yes, yes.

It is not impossible that this will not happen, eh? Moi, La Belle Bianca Castafiore,

je reste confiante et optimiste. La prof retraitée va avoir besoin de mon aide considérable (et très bien connu, le monde entier, il faut ajouter.). Je suis prête à aider. Mieux que d'être "prête-à-porter!" Oh, les jeux de mots, que j'en suis la maitresse!

Encore un verre, les mecs! (Oooo, I am not saying that out of loud, am I not?)

Still, where is the Captain? La la la... "Ah my beauty past compare, these jewels bright I wear!...Was I ever Margarita? Is it I? Come reply...Mirror mirror tell me truly!” Oh, scruffy little schoolboy, mon cher Captain Hoddack, où est-il? If there exists anyone who can fix a broken shoulder, it is he! We will simplement build a replacement while the replacement is out, if you arrive at following my route! Ah, oui, on a toujours tellement besoin de moi, de ma sagesse.

Hmmm! Ah, je ris de me voir si belle dans ce miroir!

The Gentle Sandpiper

I've sent La Bonne et Belle Bianca Castafiore off on a sort of Snipe Hunt this morning, just to get her out from underfoot.

There really is such a thing as a snipe -- a "shorebird," Wikipedia tells me. Plovers, godwits, ruddy turnstones. I even ran across the creature named for the famed attributes of my blueblood birding family: the double-striped thick knee.

I am a sucker for a sandpiper. When I was in high school, my stepmother, a great gift-giver, got me a little sandpiper statuette -- ah, I just found it: the Gentle Sandpiper Sculpture from the Smithsonian Store. Why don't I still have it? Where and when did I choose to leave it, break it, whatever I did with it? Could it be that the bill broke off, that it would not accept my sad efforts at repair?

I am known for the destruction of my own property. Fits of pique, whatever. Photographs, term papers, dissertation chapters. My hair. Gifts from stalkers.

So what is The Castafiore out looking for, what fruitless quest have I set her? To find and purchase the ingredients for injera, a type of Ethiopian bread.

The Castafiore neither cooks nor bakes. She does not grill, steam, braise, fry or parboil. The Chaste White Flower, the Milanese Nightingale does, however, love to eat and enjoys exploring the myriad of ethnic cuisines.

The Fredster lived several years in Ethiopia -- the origin of his passion to end hunger.

Strange, then, that we are celebrating the very paucity of ingredients that has made round and empty so many distended little stomachs.

He misses the bread, the coffee, the large soupy mashes of vegetables and tough stringy goat meat. Eating with the bread as utensil, the act of sopping. Tossing out the odd gem of amharic.

No doubt he also misses the beautiful woman with whom he lived (along with several members of her family) but with whom he could barely communicate. I've seen her picture and she is lovely, brown, placid, thin but also round.

Anyway, after years of harrassment, Fred is cooking an Ethiopian meal for us but is demanding (being demanding) authentic, fresh, quality ingredients.

I suppose it once was impossible to find teff flour, properly ground, to make the spongy sour injera. No more. And really, it is not far from being an unleavened sourdough -- if that makes any sense whatsoever. We go through spurts of drinking a variety of Ethiopian coffees that are readily available at a local international Farmer's Market. Even here -- deep, deep in the Tête de Hergé -- there is diversity.

When all the right makings are purchased, when the stars are all aligned, Bianca and I will clear out and leave him to it.

For today, though, the stuff of his meal is serving me as snipe, for I am in a mood.

This business of little sleep is wearing me down, eating at my sanity. Last night, I managed to sleep from midnight to one, then three to four-thirty. I feel like taking a carrot peeler to my eyeballs.

I am waiting for my surgeon to get back in town. I want to get this second left spacer out. And at the same time, I am tired of trying. Fred and I keep going over the opinions we were given last week. They still don't make sense to us.

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.)

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?

Home Sweet Home

I'm home, with a beautiful bouncing baby shoulder! And, to put a positive financial spin on things, my deductible and out-of-pocket expenses are paid, so that I am at 100% coverage. Yahoo?

[that means that in less than two months, i've paid $7,846.00 in heath insurance costs. that's roughly $3636.00 more than i had trickling in...]

In a 3-hour marathon, another PICC was inserted because I.D. just loves to put me on i.v. antibiotics. No problem, though, if it improves the likelihood of success.

This go 'round, I vocalized my concerns about the nurses and techs who seemed to delight in causing me pain by messing with my legs -- vocalized *before* admission, that is -- and it helped. I also became self-sufficient faster than was probably wise, but it sure paid off. There was no need for anyone to touch moi! And I pushed for discharge straight away after opening my eyes Monday evening!

Anyway -- heartfelt thanks to my talented, patient, and persistent surgeon, to Bob, to Mary Lou, to all who... helped get me home with one more joint to call my own!

The Fredster is slowly destressing but also is having to do most everything -- I was chagrined to find that I cannot even make coffee -- and, even were I able to, I cannot lift the carafe to pour it.

I am true to form in that I'm febrile -- the left shoulder remains exceedingly painful but I don't see how in heck it could be infected, not with all these antibiotics! We are all convinced that it is either mechanical (the spacer has moved), or muscle/nerve related. Whatever it is, I am ready for it to be gone. Already, it's apparent that as the right side heals, it will way outclass the left in terms of range of motion.

I thought of many things worthy of the blog... but am kind of limp at the moment, so they'll simply have to brew a while.

Another go 'round

Decrepit Retired Educator, here.

Well, I cannot honestly claim surprise, but I can definitely make a good faith claim on confusion.

Either on 16 or 23 February, I'll be having another surgery -- the fourth major operation since August 2008. This time, Dr. ShoulderMan will remove the cement spacer that's in now and either put another antibiotic-laced spacer in or -- if there is no sign of infection -- give me back a prosthesis!

I am going to grant myself a good inch of text space to pretend that I will get a metal prosthesis again. Yahoo! Hooray! Yet another Happy Dance!

Oh, who the hell am I kidding?

As his nurse said, when she came in to work on scheduling me, "Decrepit Retired Educator, I don't want you to get too hopeful because I don't think it is going to happen. This is *you*, after all..."

A salient point.

It's infected and he just wants me to have some measure of optimism, which I greatly appreciate. But the well-known pain and that unmistakable sensation of bone wanting to explode -- and toss in the fever, oh, and those elevated white counts and C-RPs -- and... well, let's just say that his nurse has *never* been wrong.

Dr. ShoulderMan's nurse really runs that office -- and works incredible hours. The last time I was there was on New Year's Eve and she was looking forward to an exciting night of paperwork. She does all the clinic scheduling and pre-op minutia, as well as assisting in surgeries, along with Bob, the PA. Bob rocks, too. It is a great group.

It's not their fault that we have to keep chasing this infection from bone to bone, joint to joint, while NOTHING grows in the lab cultures. He is keeping me going. He may well be keeping me alive -- but let's not be morose while the sun is shining. Which it is. It is a beautiful, windy, freezing day.

The Hoots are not a Gaggle but I might be a Jildo!

One day I will understand how it is that the Fredster and I resolve conflict. Right now, all I know for sure is that laughter's role is key -- almost the Personification of Laughter, a third person in the relationship.

Not exactly Mr. Chuckles.

Sometimes Delayed Mirth will show up, more often Unexplained Giggles.

The Hoots are the best -- actually a group of Hoots that I wanted to call a Gaggle, but upon checking, feel that the term is already sufficiently coopted:


A gaggle is a term of venery for a flock of geese that isn't in flight; in flight, the group can be called a skein.

In military slang, a gaggle is an unorganized group doing nothing. In aviation, it is a large, loosely organized tactical formation of aircraft.

In colloquial Western Canadian English, a gaggle is an adjective describing a largely disorganized group of Jildos (another colloquial adjective describing a woman that tends to be annoying and lacking in her own individual opinions) putting forth discontent among all related fellows.

In the field of systems biology, The Gaggle is an open source software framework for exchanging data between independently developed software tools and databases to enable interactive exploration of data.

Okay, so The Hoots are not a Gaggle but I might be a Jildo!

What is requiring so much hilarity? What else, but the possibility of more surgery? Yes, the Infectious Disease crowd -- and *that* could easily be a gaggle of Jildos, head honcho excluded -- opines that the right shoulder spacer is infected; Indeed, it is now deemed to be nothing if not a germ magnet. Ergo, take the sucker out! Cut this woman to shreds! And then probably do it again!

My white count is still up. The C-reactive protein -- to which people seem very attentive -- is way high and has more than doubled in a week's time. Sed rate is up (but it almost always is up). RDWs are elevated. The hemoglobin and such? They've decided to go the opposite route and are in decline... not enough to mean anything, I don't think.

And, okay, if you insist on taking my temperature, I am likely to have a fever in the afternoon and evening. Yes, it is my evening wear. Glassy eyes, gleaming not unlike a hyena's orbs in darkness, nicely offset by my glittery, sallow skin. (Ewwww! "glittery, sallow skin"? Ewwww!)

Actually, I am pretty sallow. And pale at the same time. My hair? Oh, God. Sad to say, I haven't had the energy to demand a ride to get it cut. Usually, before a surgery, that is the last thing that I do in preparation in an all out battle against Bed Head. It didn't happen this time and now I cannot even raise my hands to my hair without burying my chin in my chest first.

Today's challenge? A shower. The first since December 15. I got my staples out on Wednesday and was told to wait a day or two -- one of the staples ended up wanting to be a permanent piercing and that area is raw. I will need the Fredster to Saran Wrap the PICC line first. Also, this cold Manor is going to have to warm up a bit -- we will go hew some yew trees to feed the fiery furnace before I hop into the shower stall.

I am not sure what the PICC line symbolizes to him. It means something and I am definitely out of the semiotic loop. The last go 'round with one of these thangs, he quit two days into it. Dare I say "in a fit of pique"? Hell yes, I dare say it: A bloody fit of bloody pique.

So this time, I spoke with him, using my inside voice, first. He was shocked that I would even think it possible for him to bail on such a task. Okie-dokie, then!

And suddenly he is deciding that the dose that was due at 11 am would be perfectly fine if given at 4 pm. What does it matter? And then... the next dose -- it is an every 12-hour schedule -- will be at the completely arbitrary time of 1 am. Everything has become a battle.

Is it possible that he can consider the failure of the cultures to grow out an offending organism to be some sort of personal failure on my part? The continuing pain and trouble doing almost everything? He is just plain sick of it. *That* I understand, sharing the sentiment. I am trying not to ask for too much. In fact, today, all that I am asking of him is the care of the PICC line (including the shower wrap). The only thing I have been able to eat is peanut butter sandwiches (I cannot get the strawberry preserves top off the jar) and microwave popcorn. This is supplemented by raw broc and cauliflower -- which I love. It just is not exactly... cuisine.

Something has happened and I missed it. Even The Hoots are not hanging around the edges -- and as a very bad writer friend of mine would say: there is no limning going on.

How very much I miss our fellowship when I feel its absence.

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.

Nerves are setting in

I couldn't sleep last night. I have the Hospital Terrors and was so hoping to avoid them. There are mountains of things that need to be done and my tendency to make lists has kicked into high gear.

Now it would be spiffy if I could just check a few things off.

I will be the last surgical case of the day. Apparently, orthopedic surgeons have this hangup about operating on infected joints when there is the most remote chance that a microbe will escape into the rarefied air of the surgical suite... and then jump into the open wound of another patient. My bacteria are very social.

The pain is kind of out of sight but I am not medicating for it. I am doing a modified Drug Holiday (yes, on my own; no, Shoulderman hasn't a clue). It will help me post-op. But the pain is starting to suck, so I may have to end the vacation.

Fred has gone off to... church. Here at Marlinspike Hall, deep, deep in the Tête de Hergé, his worshiping options are plentiful. He attends the First Existential Congregation of TdH, an interesting group of very strange people. I stopped attending over a dispute about the ordination of Transgendered Alien Republicans [TAR]. Nothing gets to me like the pointed exclusion of a group of people, even if they are TARs.

It occurs to me that these infections may be my end. Maybe their concern over the MRSA is not so puerile after all. Shoulderman has intoned that we may end up chasing these nasty bugs from joint to joint. I haven''t had the courage to tell him my left hip is hurting.

How much hardware do (well, at this point, *did*) I have?

1999-left hip fractured and pinned
2001-right hip replaced after collapse
2002-left shoulder replaced after collapse
2002-right ankle reconstructed after fall in ICU (the beginning of a Sentinel Event that ushered in the era of CRPS)
2005-right shoulder replaced after collapse
2007-right elbow reconstructed after a fall
2008-right shoulder prosthesis removed, replaced with cement spacer
2008-Monday, December 15... left shoulder prosthesis [probably, but pray not] removed, replaced with cement spacer impregnated with killer antibiotics...

We're going to chase infection in all of these possible incubation hot spots? In that same space of time, there have been four ressuscitations, three Addisonian crises, two pneumonias, many lupus inflammations of heart and kidneys, and *way* too much time spent hanging around on ventilators. My terrific luck cannot continue to hold.

Way to talk myself into a funk!

Solution? Scrub the golden toilets of the Manor! Change the bedding of the various Sleep Chambers! Clean the Moat! Mow the Wimbledon Miniature Courts! Dust the Rubens! Refinish the Velasquez! Go to town and snag more Gold Leaf for the 16th century dinette!

Ar! Temp? 101.2. Ar! Would that those First Existentialist Congregants prayed...

I have great faith in ShoulderMan. He is easily one of the top ten OS in the country, very humble, and tenacious as heck. He is also an unusually talented *doctor* -- and by that, I mean that he doesn't shrug, mutter, and disappear when my medical crapola surfaces after his surgeries. He listens, absorbs, and doesn't coddle -- the perfect combination for me and my increasingly woe-is-me attitude. He will do his part and I must do mine. What is my part, though? I have been living with pain that stays on the very high end of that stupid 10-point scale, running fevers daily, sweating, able to do less and less, not sleeping for all the pain, and... chest pain is becoming way too frequent an occurence. It is hard not to worry about that freaking "dilation" of the aortic arch.

When did I become so fearful, so tentative?

Where is La Belle et Bonne Bianca Castafiore? On those rare days where I need that Diva-Witch, she is nowhere to be found!

ShoulderMan

Surgery. Monday, 15 December.
Exact time TBA.

Ho!
Ho!
Ho!

The good surgeon promised to do his best to preserve the prosthesis, and I know he will...

because he is none other than:

ShoulderMan!

أنا انظر إلى الضحك لي في هذه المرآة الجميلة

Good evening from Marlinspike Hall, deep, deep in the Tête de Hergé. La Belle et Bonne Bianca is booming through her inevitable "je ris de me voir..." -- except that she is putting herself through some linguistic paces. Whenever I hear her relax into Italian, I am reminded how difficult it must be for her -- she is Italian, after all, even if a rabid francophile. We make no allowances and she is so incredibly fluent that it rarely occurs to me to -- "to" what? Recognize her exile? Sooth her marginalized soul? Please, this is no grand drama! She can wield whatever language she likes, whenever she likes, but she, like most of us, has this incredible fondness for having people respond to what comes out of her mouth.



En tout cas, it is sounding not unlike a papal Christmas greeting around here tonight. Around her, tonight.




I ridere a vedere me in questo bellissimo specchio!




Late last night, my Personal Physician, the Boutiqueur, e-mailed me the wonderful news that *nothing* grew in the cultures of the personal ambrosia that was the aspirate from my left shoulder. From the expansive comfort of my wheelchair, I have been Happy Dancing à la Snoopy ever since.

Actually, I just now got out of bed and while in bed was hurting too much to attempt dance of any sort. (I've been known to do a mean horizontal shimmy. Ar! If you knew the shimmy like I know the shimmy, you'd know I wouldn't be caught dead in mid-shimmy these days. I mean, really, I only have *one* shoulder at the moment and the other one is nothing but a troublemaker.)


Ik lach me te zien in deze mooie spiegel!

What is difficult to explain is my steady tendency to take less pain medication as I hurt more. It's actually not complicated and the logic is stellar, but I am receiving odd silences and regards askance in response. Dr. Paindude's PA, the Lovely Lass, added a fourth dose of 10 mg of methadone. I tried it for a week and know that it will be -- perhaps -- another week for it to leave my system. While there was less bone pain overall, there was not one iota of benefit to the specific pain that is sucking my sanity into its black hole. (Is this where women toss in the odd "LOL"?)

My preference is ibuprofen. It has the important advantage of also bringing down my temperature.

Я смеяться видеть меня в этом прекрасном зеркало!

[These things write themselves -- think Rita Skeeter with her Quick Quotes Quill -- still, the Cyrillic alphabet comes off as uppity when italicized, don't you think?]

Fred is trying to be happy about it. Neither of us think back to July, when this scenario was last in play. The Boutiqueur has conveyed the lack of results but the orthopedic surgeon, ShoulderMan, has yet to weigh in. I imagine forlorn tones as ShoulderMan calls the ID-Dudette, who has already told me that another surgery to remove the remaining shoulder "must happen."
There are times, and this is one, where I think my teetotalism is ill-advised, and is -- indeed -- contrary to good health.

أنا انظر إلى الضحك لي في هذه المرآة الجميلة

Getting Down To Brass Tacks*

Sometime today -- I'll spare you a description of where, how, when, and why -- I realized that coming home after the upcoming surgery may not be the wisest course. Coming directly home, that is!

How in heck am I going to be able to care for myself, much less keep The Manor neat as a pin? The Old Masters dusted and straight (not to mention the occasional Rubens or Velasquez restoration project on long weekends)? All the antique Blue Jasper Wedgwood plaques free of nasty cat fuzz? The lawns -- replete with a scale replica of Wimbledon courts 1-19 plus Centre Court, sans that awful poof of a retractable roof that's going up for next year -- deeply green and trim? Oh, and how in the world can I keep the black algae out of the moat without a daily brushing and correction of chlorine requirements? I mean, I doubt that I'll be able to sport SCUBA gear anytime soon.

As I was experimenting on basic hygiene techniques without benefit of either shoulder, my spritely spirit plumbed the depths of despair.

Oh, am I being too theatrical for you? Well, tough titties! Whoseblogisitanyway?

Continuing my efforts at putting the Fredster first, for a change, the idea came to me fairly effortlessly: This time, when they ask "Don't you think you would benefit from some time in Rehab?" I will say "You know, that might be a hell of a good notion."

Usually, I curse and produce spittle. Rant. Cry. You know, all of those wonderfully adult Drama Queen reactions. The Pout. The Woe-Is-Moi. Really, though, everyone who knows me knows that I am filled with ice, absolutely cold-terrified at the notion of being "put away" away and forgotten.

The problem is that there really is not much that can be "rehabilitated." I mean, if you have no shoulders, even intensive PT (with the most motivated of clients) has limitations.

I guess this is more a case for OT and an 1,000-page medical supply catalog than a muscle bound attendant with an American Physical Therapy Association (APTA) endorsed gait transfer belt stashed in his dark blue fanny pack.

*HERE

*THERE

Between here and there, I sneaked up on Darling Fred and blurted: "DoYouThinkIShouldGoToARehab(OrANursingHome)AfterSurgery?" and then, with no intent for emotional blackmail, burst into tears.

He fairly yawned, and he definitely laughed at me.

"No, I don't think so. I know it is embarrassing for you, but I can help you wipe your ass... or we can convert all the damn bidets around here back from planters to their intended usage. What else are you worried about?"

Well, all I can say is -- thank goodness someone is willing to get down to Brass Tacks* -- and aren't I lucky to be with such a gentleman, here at Marlinspike Hall, deep, deep in the Tête de Hergé ?

********************************************************************************
*Brass tacks is an object used in the popular expression "get down to brass tacks". The expression usually means clearing out confusing details and finding out the real facts about something.

The etymology of the expression is unclear. It may have roots in the way fabric manufacturers used to mark out a yard in tacks on the counter so customers could buy their fabric accordingly. It was common for some customers buying material or draperies to say to the salesperson "Let's use the brass tacks" which were embedded in the counter. Usually the salesperson would use his or her arm to measure the material. This has been seen in the UK even in the 1950s. This was done to save time overall, but the suspicious customer would often insist on having the material measured exactly, right up to the line of brass tacks.

Another possibility is that in the 1860s the US government issued boots for soldiers that were constructed using brass tacks to hold the leather soles on to the bottoms of their boots. As the boots wore down, the tacks would protrude through the sole and in to the bottom of the soldier's feet. 'Brass tacks' could mean to get to the absolute bottom of things in reference to shoes.

It is also argued that the idiom is derived from the "Brass Tax of 1854". When the makers of clothing, shoes, instruments, tools, etc. that required brass would gather the materials and count up the cost, accounting for the brass tax was the last - and most expensive - step. Therefore the phrase "get down to brass tax" could mean to get to the last and final thing, or to get past the formalities and get down to the crux of the matter.

It is also noteworthy that the tax, in addition to creating revenue for the government, led to a sharp increase in the cost of many instruments. tubas, trumpets, cornets, french horns, and other popular brass instruments gave way to flutes, piccolos, clarinets and oboes as the more affordable woodwind instruments' popularity skyrocketed. Evidence of this is most notable when examining Civil War marching music which relies heavily on the beating of percussion instruments and melodies from the woodwind family. Brass instruments are noticeably absent.

The earliest known use of the complete phrase in print, in the March 4, 1871 issue of the Galveston News (page 3), is "filing down to brass tacks"; hence, a shoemaker filing away too much material in excessive zeal to do a thorough job. The meaning was originally about the same as "putting too fine a point on it" or "over-arguing the point."

The expression might also be Cockney rhyming slang for "facts."

Another suggested Cockney etymology is that the expression "down to the brass tacks" may have originated from a similar British expression: "down to the crass facts." This original phrase is used to describe dealing with the basic details. Because of the Cockney British accent, it was incorrectly pronounced "down to the brass tacks," but still holds the original meaning.

shoulderless

so it turns out that my remaining shoulder prosthesis is also infected and must be removed. i feel like the punchline of a cosmic joke.

ADDENDUM:
Wednesday PM -- Well, the aspiration was successful, at least. They tapped three different spots around the hemi- on my left side. One step down... maybe this time, knowing in advance what little booger is in there growing and causing trouble will make the whole rigmarole go smoother. (Last time, the aspiration was futile... and then the specimens taken at surgery were left overnight in the OR, rendering them invalid. The only positive result came from my nares --the oh-so-common MRSA -- and pray, above all, that *that* bug is not the culprit. How could it be?)

Home

On 25 August, I had surgery to see if my right shoulder prosthesis (one of three -- prostheses, not shoulders) was infected and needed removal. After finding 4 pockets of pus and having the prosthesis fall out of its own accord, I wasn't doing well. So they decided to keep me on the ventilator, hide me in the ICU, and not close the wound. On 29 August, the second surgery was performed with the goal of "washing out" the wound, putting in several drains, and inserting a sorry looking cement spacer impregnated with antibiotics.

My cultures were inadvertently left in the OR overnight, so what organisms were growing became a topic of consternation between my surgeon and his staff and the infectious disease guru and his minions.

I did, however, clearly grow MRSA, and so spent my 10-day stay in isolation. Yellow is a most unbecoming color and Fred found those blue gloves hot and cruel.

My supremely talented orthopedic surgeons are adroit at deflecting my pleas for promises of a new prosthesis in a few months -- they just won't commit. My main orthopod does a bad imitation of a spastic retard when I ask him what my arm movements would be like without a shoulder.

He fails to understand that this would leave me with one functional extremity. He fails to understand, indeed, everyone seems to fail to understand, that I cannot lose any more.

Did you hear me?

I cannot lose any more.

I am on i.v. antibiotics at home -- vancomycin and *bleep* (I cannot remember and don't feel up to rolling into the kitchen). So that is 4 infusions a day for 6 weeks. It is not a big deal -- except insofar as it reminds me of circumstances I'd rather ignore for a bit.

The pain is horrible but I believe the management of it is at the optimum.

(Don't touch that sentence... It was difficult enought to formulate once -- I won't do it again.)

The Friday before surgery, I had an echocardiogram to rule out endocarditis, as I have a bicuspid aortic valve. Thankfully, I came out "clean." Oh, except for the aortic arch aneurysm that is currently measuring at about 4.7 cm. The cardiologist who called and reamed me out for missing a few years of testing was not hesitant to scare me to death.

So there is much on my mind and much that is hurting the body -- the CRPS/RSD, for example, is unbelievably inflamed (my legs have never ever looked/felt this terrible).

Despite getting two units of blood to boost my hemoglobin of 6 -- I am tired and wonder what my H & H is now. My surgeon's admonition of how to go about life until seeing him at the 6 week mark? "Rest and think healing thoughts." What a lovely man, not to mention a talented physician. I don't know if it is technically true, but my heart says that he saved my life.

Well, off I go to try and catch up on some reading in the ether of the blogosphere... Thank you for any stray good thoughts you can label and let loose on my behalf in the coming weeks.

Hiatus

Retired Educator here,

I am having surgery Monday to remove an infected shoulder prosthesis. No one was able to tell me whether or not I will have internet access if I bring my computer. The closest intel was "Well, I know that we are a wired hospital because we have these things everywhere!"

Huh. I anticipate major 'puter withdrawal. The distraction would have been nice and I also was looking forward to blogging the patient-side of a hospitalization -- now that I am more familiar with the major gripes let off by medical types, I think it could be an interesting exercise.

Yes, thank you very much, I know that there is nothing preventing me from taking notes, even sketching the pieces out long-hand. I can still do it. Still -- stop trying to solve my problems, you people, you! I need to fuel useless angst -- it serves to crowd out the more dire reality! You're just messing with my Trojan Horse of Denial.

I'll be in the hospital between 5 days and several weeks, according to the surgeon. According to his nurse, I'll be there 3 days. I'm thinking she probably knows best. They will put in a cement spacer that is laced with antibiotic -- after a "few months" that can be replaced with a new prosthesis. I'll also get i.v. antibiotics through a PICC line. My orthopedic surgeon, however, seems intent on depressing me further by saying, and saying again, that I could end up "without a shoulder joint." There is nothing someone who is already a geeky gimp stuck in a wheelchair wants to hear more! Excuse me while I panic.

I couldn't even get him to give me odds. That's low, when someone won't even give you odds.