The Scream

Munch is one of those artists whose work you want to grace every room -- they have such a welcoming, warming effect. Certainly, waking up to one flashing in the middle of the night, backlit by, say, a lightening strike, is an illuminating experience.

So, it's almost official. German Expressionism has stomped all over the schmalzy poppy fields and brasseries of the lame French Impressionists.

Just kidding.

What is almost official, indeed *is* official, is that a third surgery is planned for my right shoulder area. Philosophical inquiry: When does the area between clavicle and humerus cease to be a shoulder area? [Mine may be the only Hergéveen Manor House in the region in which you will actually discover the sound of one hand clapping.]

You only have to tell me a dozen times, you cross-eyed Physician's Assistant! I get yer everlovin' drift, you emotionless cretin! [There is a storm brewing in some medical bloglets that purports to be about the usefulness of beings such as PAs and NPs. It is when you plomb the depths of the meaning of "usefulness" that the real argument, that is: how much money can Happy and Scalpel legally earn without compromising their liability one red cent? It's a riot. Yawn.] {I am being mean. The argument is interesting, and, as it touches on the nature of things, important to the future of healthcare. *burp*}

She is very nice. She has long, straight, and recently trimmed dark hair. She looks to be about 12 and speaks in a sing-song voice when saying things like, "I know it is hard."

She wouldn't know hard if I hit her.

(This is my new favorite sentence. I am going to enjoy it again: She wouldn't know hard if I hit her.)

Which, of course, I would never do -- I don't have any shoulders.

I may not have mentioned that I may decide to go left-hipless, too. But I think I will save that for when life begins to bore.

"The spacer in your right shoulder is now just a foreign body that is attracting bacteria. It must come out. You are having fevers, pain, and elevated white counts while on intravenous vancomycin. This is not normal. We cannot keep you on antibiotics indefinitely, particularly as we still do not know what we are dealing with -- your cultures are not growing any pathogens."

She has the art of S - V - O down pat. The plan, I see, is to wear me down with simple declaratives and restatements of what they think I already know. Ha! They can never know how little I really know! I should not be misoverestimated.

"But," I whine, "It seems like we are just chasing this from joint to joint, bone to bone, doing one surgery after another. It can't still be an emergency each time! I know I keep saying this but please hear me! I. cannot. do. this."

Note that most of my statements should be issued with asterisks and readily found errata sheets. My écouteurs, and rare interlocuteurs, also ought to be equiped with something like a fly swatter, to manage the pestilence of my punctuation -- it tends to swirl.

That would be pity in her eyes, however briefly -- proof she definitely does not know me. I am quite capable of producing sufficient self-pity, thank you. No matter, her tone of voice made plain her conviction that I had no choice but to play out the scenario that her boss has had her deliver.

He *may* have said the same thing to me last Tuesday. He *may* correctly have concluded that I am not accepting this thing that he sees as a fait accompli. Just because I am fluent in the language does not mean I am the least bit cartesian.

Maybe it wasn't pity. Maybe I poked her in the eyes with speed faster than light. Yeah... that's it. I poked her in the eyes -- yes, both eyes -- with a gnarly stick and was so quick about it that neither one of us saw it happen. Yeah. And where is the thermometer? Fred is hiding the thermometers...

The ID person I trust most is on vacation -- and while she can be equally assertive, she promises an open mind. I find her believable and capable of sustained argument and explanation. I leave her exam room without any still-plaguing worries or questions. Her hair is blond and blunt cut. She is tall and wiry, and wields her wit like a very sharp knife. She gets grossed out by skin ulcers. This I know because we sat together, groaning "grossssss!" at the sight of my nasty foot wound -- it is almost healed, thank goodness (and the Wound Care Center).

We call her Susan because that is her name. Susan doesn't afford me the time to develop a healthy strain of denial. She almost does the Triple Gallic Non, and does do a passable wagging finger. They say she is just a PA, but I suspect that she is the brains behind the outfit. I mean, go figure -- which of their medical staff has managed a two-week vacation at high-holiday time? That's right -- Susan has.

I am trying to understand how the passage from infected prosthetic joint to osteomyelitis means anything. It has significance for these medicos, I can see that. They think it profound, even.

Let's see: same process, slightly different medium. Certainly, once in the bone, any bacteria or what the eff-ever has it made -- I have pre-existing avascular necrosis virtually everywhere. A match made in heaven.

I am beyond depressed. I scared Fred last night -- sleeping fitfully, I kept waking up screaming. You see, as the shoulder area starts to relax and fall backward toward the mattress and the pillows -- well, it sure feels like tissue and schtuff rip and tear -- it is very painful. Horrific, actually. And, if it's my unconscious ruling the roost, I scream. All the care I take to behave well and unremarkably in my waking hours? A complete waste if I am going to scream my bloody head off all night.

Marmy stole my heart away during all that noise, though. As my wailing fades, I see Fred floating in mid-levitation, hair pointing skyward. I see the tip of Sam-I-Am's tail fleeing the scene. Dobby immediately jumps in the trashcan (there is no explaining Dobby). But Marmy? She has come close to me, she is "ack-ack"ing to beat the band, seeking in my scream some hint of syncopation for herself. She came close, she stayed, she did not leave me all night long.

Don't touch my anthropomorphism. It is a vestige of good mental health.

The Boutiqueur and I have a secret worry -- the heart. This breezy and beautiful afternoon, just as we arrived back at Marlinspike Hall, deep, deep in the Tête de Hergé, I had a good five minutes of chest pain. It could not have been truly cardiac -- but I am psychologically primed to fear the be-all-end-all of a "blown" aortic aneurysm.

There is a huge logical disconnect -- but the point, I suppose, is that any note taken of the heart now quickly converts to an internal seminar on what it might feel like for that sucker to really blow. The cardiologist I spoke with on the phone lacked all humor. I asked what symptoms I should learn to recognize. He laughed mirthlessly and said something like: "You won't have time to have any symptoms..."

I don't think that has any relationship with this tenacious infection -- The Boutiqueur is more correctly focused on my crappy aortic *valve* -- its bicuspidness. Bicuspidity? And the chest pain? Well, my heart rate hasn't been below about 110 in months now... Shoot, probably nothing but heartburn or a pulled muscle.

Yeah, Retired Educator! Borrow trouble, you nitwit.

Earlier this evening, I began a reread of The Adventures of Tom Sawyer. I like the transparency of my mind. My memory stretches back to sitting on an old painted bedstead with a very lumpy mattress -- down in my grandparents' basement, reading Tom out loud while my Nana ironed. It would have distressed her greatly to learn that the first "real" book I ever picked for myself, and finished, was Go up for glory by Bill Russell.

photo credit

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!

The Castafiore on Kennedy

Caroline Kennedy wants Hilary Clinton's New York Senate seat.

I, La Belle et Bonne Bianca Castafiore, want the mezzo soprano role of Carmen, despite the general contention that I am not -- {sniff} -- sultry enough.

"Tant pis, tant pis," murmure-t-on.

Kennedy told a local newsman over the weekend that she wants "to do her part" in the general goodwill inspired by Obama's election. "We all need to pitch-in" -- that kind of thing.

Unheard of!




She is reported to be an on-again, off-again voter and is not reknowned for her efforts within the Democratic party.

(Whatever that means... What does that mean? Mais, qu'est-ce que ça veut dire?)

Roland Barthes, he is not so much known aux E-U -- if you ask, no one (personne! personne!) has read Mythologies. Il en serait content, je crois. No one needs to *read* it. Ah! je ris de me voir si belle dans ce miroir...

En fait, je rigole!

Canonical images only go so far.

But I, La Belle et Bonne Bianca Castafiore, will not be the fool to underestimate them.

Barthes? Killed by a rogue laundry truck.

Death of the Author, indeed!

(Oh, puh-leeze, mes amis... a joke. Not a great or grand joke, and perhaps overdone, but -- still, a joke!)

Vous me suivez?

Aces over eights

I am passing through episodes of approximately 30-60 seconds of 10 out of 10 pain. Passing through as in stepping into the light mist of a gamey perfume -- and out again -- a delicate lunge, a tantalizing twirl into the rank emanations of owwwww -- and out again. Et ainsi de suite.

Ten out of ten: I have maintained that such a score would never be attained (by me), precisely because of what it is supposed to mean -- the worst pain imaginable.


The worst pain imaginable? Right off the bat, dès le début, I have issues. My imagination, a well-conditioned muscle, really should not be invited to the party. As an undergrad, I chose to satisfy my math requirement by taking a course in logic -- taught by a former priest whose defrocking story was mythic. I went on to almost major in medieval philosophy. Probably would have afforded me a more lively job market...

Professor Ryan made it so that this can never be just the issue of ten... because there is also the issue of zero.

In between the waves of ten are times of seven, eight -- there where I normally subsist. Ach, mein gott.

My good sense is floundering.

Fred, in Fred's goodness, is pulling chauffeur duty again this coming week. Monday: Dr. Boutiqueur, followed by Dr. PainDude. Tuesday: ID-Man and the Infusion Center Gals. Wednesday: Repeat Tuesday, plus see SuperTall PA to Dr. ShoulderMan.

Then ring in the damned new year.

Lindsay Wagner looks like death warmed over -- a great thing for a spokesperson for the Sleep Number Bed -- drab from head-to-toe in browns, a testament to verbal sepia. I am not so much sleep-inspired, looking at her, as worn out.

We've shut ourselves up in our little apartment off the roomy kitchen in the East Wing of Marlinspike Hall. Holed up. Huddled in seclusion. Not that there is anyone from whom to hide. The Castafiore is out driving Miss Daisy crazy, as we call her Sunday evening shenanigans. The felines are nowhere to be found. They did not appear underfoot at the sounds and smells of Fred Cuisine, which normally finds the trio circling our feet much as might three tiny sharks.

Three little *land* sharks, that is. Sly. Cunning. "Candygram!"




I have slept only four hours since Friday. The details before that are rather sketchy. I've not been fun to be around and seek to correct that moral failing.

Wa Hoo. Yee Haw.

There.

My mind strays -- you may have noticed -- and I smile, thinking of my friend Diana-with-an-H and her most recent trip to Deadwood in South Dakota.

I love Diana-with-an-H. She totally *gets* me and chooses laughter as the best response to most everything. Well, that's probably not totally accurate. Better to say that I've yet to see a sad circumstance that could control her hilarious nature. Combine that with a good heart and, yep, you've got an exceptional person.

From time to time, she feels the need to gamble. To get the hell out of Dodge. {insert a westernism here} Do I live vicariously through her? You betcha. I don't believe that I've hit 10 on the pain scale since thinking of her, happy out in a snowstorm, soaking up history, and sharing it with me -- far away, wimping out, all whiney. What a gift! Here follows her email to me -- that she scribbled upon getting home -- knowing. You get that? Knowing!

(I'm so far away from ten. I feel it and I don't. The smile of friendship, even the memory of the smile -- wipes it away.)

We made it home safe and sound. As we were throwing our bags and sacks in
the house, I was putting everything away and already have a load of laundry
going...

Rapid City was crazy with shoppers today.. We just hit three
stores and all had to do with Hunting... Cabalas-Shields-Blackhills Archery..
and then we were on the road.. too many people.

Last night, we had the
coolest trolley car driver who was giving us and another young couple a history
tour of Deadwood....

It was snowing so hard and the wind was blowing
that we jumped on the trolley car going the other direction, just to get out of
the snow....

He was talking about the Adam's Family. He was a merchant
in DW that made a ton of money and built a Mansion back in the 1800 and it still
stands today.. He also gave DW the money for the Museum. with one condition..
they never "charge" anyone to see it....

The road going to his Mansion
is also the same road to the Grave yard were Wild Bill and Calamity is buried...
You can go on tours of the Mansion also....

During the small pox break
out.. that Calamity helped with and also, every person she took care of.. did
not die.. however over 300 children died during this break-out.. and all our in
the grave-yard....

Wild Bills' Wife, who he said 'was the love of his
life" was in a Circus when they met and was said she was very pretty... Wild
Bill was only in DW for 6 weeks when he was shot...

His goal was to get
rich off of the gold in DW for his wife and him... He met Calamity in Cheyenne
WY and they both signed up to be "out-riders" for the wagon train bringing
supplies to DW... (out-riders rode ahead and checked the trails and looked for
Indians and problems)

It's said that Bill admired Calamity for her
Courage and he always tipped his hat to her....
But they say she grew up
very poor and a very rough childhood and she was built like a Man for those days
and also she never took a bath....

They say she left DW for three years
and came back with a 7 yr old child, a girl... well.. she was still such a drunk
and cuss and filthy.. that the State of S.D. came in and took the child away
from her..... She told everyone this was her child.. but the timing did not
match.. so they wonder if she might have found this child stranded.. no one
knows for sure....

They also said the Sheriff Bullock Never Once had to
use a Gun to take someone to Jail.. they said he stood 6'6 and had Gray Eye's
that looked right though you... they said he was a huge man and huge shoulders
and huge Hands..... big big Man.....

Some of the books say Wild Bill and
Comity were Lovers, but this was not true.. she said he was her "best-friend"
and she loved him but not in the sex way...

Wild Bills wife came to DW
and saw his grave and thought about taking him back East.. but decided this was
his final resting place and he needed to stay there. That was the one and only
time she was there....

This spring, lane and I are going to go to the
Mansion and Museum and Grave Yard... so I'll be sure to get pictures....

We were talking about the show DW and this guy was telling us how much
history and a lot of things are True or close to the truth of the real story....

He was telling us some kids went and stolid the Last Chinese Head Stone
two months ago out of the grave yard.. but they got caught and it's been placed
back on the grave..... So that's good.. also very sad....

We were
talking about it being BAD KARMA to steal from a grave yard... gives me the
creeps......

While we were on the trolley car.. I was thinking of you
and how much you would LOVE this and the stories being told....

So..
wanted to tell you about them before I forgot......

Christmas Day I had
Prim Rib-Ham-Scalloped Potatoes and fried shrimp.. Last night was Prim Rib and a
ton of Crab Legs... Yummy.....
Tonight.. Mom's making chili....

Okay.... Hope things were nice and quiet and pain-less as could be for
You.....

Good Night... Love Dianah

Pain? What pain? I am all smiles.

WordleMeister of the Day: Fresca

We have a winner!

Fresca solved Wordle Challenge #1 just by giving it a quick glance. A piece of cake (easy as pie!)!

La Belle et Bonne Bianca Castafiore finds the Wordles a doltish passetemps but is fond of this Citrusy Cyclamate who recently plunked herself down in the middle of one of Retired Educator's many fab pity parties. La Fresca's appreciation of choses tintines and her hearty cries of "blistering barnacles" have endeared her to the shy, retiring diva.

I wondered whether classifying this Wordle Challenge as "easy" was fair -- but the proof was in the pudding (cake and pie). I suppose a person might be able to google his way to the appropriate citation -- Citrusy Cyclamate claims to have done so for Wordle Challenge #2 and to have easily arrived at the solution. "Poobah!" I say. "Poobah!" To her credit, she is keeping the results to herself.

La Fresca has further shown herself to be of an altruistic nature by opting to forward her used copy of the book in question to a starving child, an option designated in the official statement of Wordle Challenge rewards.

As it happens, Little Senasa in Nazareth, Ethiopia, has culinary designs on this delectable chunk o' paper pulp!

The first Wordle was a jumble of the opening of Joyce's Ulysses:

Stately, plump Buck Mulligan came from the stairhead,
bearing a bowl of lather on which a mirror and a razor lay crossed.
A yellow dressinggown, ungirdled, was sustained gently behind him
by the mild morning air. He held the bowl aloft and intoned:

—Introibo ad altare Dei.

War is over if you want it

Happy Christmas (War Is Over)

So this is Christmas
And what have you done
Another year over
And a new one just begun
And so this is Christmas
I hope you have fun
The near and the dear ones
The old and the young

{Refrain}
A very merry Christmas
And a happy New Year
Let's hope it's a good one
Without any fear


And so this is Christmas
For weak and for strong
For rich and the poor ones
The road is so long
And so happy Christmas
For black and for white
For yellow and red ones
Let's stop all the fight

{Refrain}

And so this is Christmas
And what have we done
Another year over
And a new one just begun
And so happy Christmas
I hope you have fun
The near and the dear one
The old and the young

{Refrain}

War is over if you want it
War is over now

--John Lennon, Yoko Ono

photo credit

Eartha Kitt

I've always said to my men friends, If you really care for me,

darling, you will give me territory.

Give me land, give me land.

(January 17, 1927 – December 25, 2008)

photo credit -- Thank you, Diddy Wah

Cortical Changes in CRPS

Lifted from PubMed -- where I was directed by MedWorm, "the Internet's medical router... over 6000 authoritative RSS feeds go in... hundreds of new RSS feeds by category come out..."

December 18, 2008 European Journal of Pain

Cortical changes in complex regional pain syndrome (CRPS).

Karin Swart CM, Stins JF, Beek PJ.

Research Institute MOVE, Faculty of Human Movement Sciences, VU University Amsterdam, van der Boechorststraat 9, 1081 BT Amsterdam, The Netherlands.

Recent research suggests that changes in cortical structures can contribute to the pathophysiology of Complex Regional Pain Syndrome (CRPS). This review provides an overview of studies showing cortical involvement in CRPS, including mislocalizations of tactile stimuli, changes in size and organization of the somatosensory map, changes in motor cortex representation and body perception disturbances. In addition, we review experimental treatment approaches, such as mirror therapy and motor imagery programs, aimed at restoring the integrity of neural processing in the sensory-motor cortex in individuals with CRPS. The intervention effects are promising and can be theoretically motivated on the basis of established principles of neural organization, although important questions concerning the precise neural mechanisms of action remain unanswered.

PMID: 19101181 [PubMed - as supplied by publisher]

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?

Ruby* Takes My Love to Town

Fred and I went up and down the hills yesterday, Ruby the Honda CR-V happily putt-putt-putting along. For several years, my darling and I stressed and argued, pitched the various merits and demerits of buying something, anything, that rolled on wheels, was safe and easy to handle -- and what else? Oh yes! Something that could be fitted with a mechanical wheelchair lift.

Without these things, this was the drill for getting Retired Educator out of the house and loaded for transport: I ride to the old low-to-the-ground Toyota in my power chair, dragging along a folded aluminum walker. I resemble a bionic grasshopper, the legs of the walker waving in the wind like buggy antennae. It takes a few minutes to open the difficult passenger side door, and a few moments to sit and weep hysterically afterward. Woe! Woe! Alas! Alas! A few final beats to the breast, then I set up the walker in front of the chair, stand -- and, while holding onto the car door for dear life, do the Gimp Pivot. There follows moments of schizoid conversations between my Will and my Gimpiness, usually held aloud for the entertainment value they offer to the professional women strolling by. Puis, Fred carries out the manual chair and loads it in the back, cursing under his breath but waving at the ladies with a hospitable look about him. Ensuite, he plops into the power chair, balances the walker on his bony knees, and drives it all back into The Manor, plugs in the chair, finally grabs *his* stuff, and... we're off. Of course, we did a similar version of this routine upon our return home -- but usually some sort of Event Intensifier was in play, such as a full bladder -- because Retired Educator cannot manage to pee away from home without assistance, and Fred is not always made welcome in women's bathrooms.

(Forget *me* not having autonomy -- what about *him*?)

Okie-dokie -- choo? Train? Thought? Ah, yes! The first thing that comes to mind in terms of a vehicle, of course, is the Ubiquitous Clunky Van For Crippled People. They seem to come only in white or navy blue. Oooooo! I want me one of those -- big, ugly. Yep, big and ugly -- with unmentionable gas mileage. Sasquatch would have nothing on our carbon footprint.

Fred flat out refused to drive a van or a "large" SUV. Rarely does he say "no" to what I want -- excuse me as I blot the tears and *sniff* -- so I pay attention, especially since "what I want" always seems to involve a sacrifice from him. I want this new car with a lift -- but who has to load the chair and drive the car?

I watched him struggle for years, watched him hurt his back using stopgap ramps and entirely too much muscle power wielded with disdain for basic body mechanics. My "want" was, in great part, an unspoken "need" of his. In subtle ways, too, we were both caving to the difficulties of everyday life. CRPS / RSD erodes social interaction and there's a measure of discipline required to approximate "normal." It is easier and less painful to hide out at home -- but it is counterproductive and subtly will erode at both physical and mental health. I know this because as I look back at those fun times from the future of today, where the state of my health *does* prevent me from going out, I am about to descend into an ulcer-riddled, slobbering idiocy. (Ho! Ho! Ho! And Merrrrrry Christmas!)

I'm just saying: Normal changes. And yes, if pressed to do so, I might admit that my daily life is in many ways blessed. Jeez.

Anyway -- take, for instance, the normal weekly chore of grocery shopping.


Fred is a consummate consumer, very up on availability, totally knowledgeable about prices and how to factor in such things as convenience. He also happens to be one of those lovely people who could easily have taken a career detour into the culinary arts. Yes, Fred can cook! He has had the responsibility of buying and creating two meals a day for 30+ homeless men, each of whom had an active illness with some sort of comorbidity. He has had the responsibility of cooking for Whimsical Moi and La Belle et Bonne Bianca Castafiore -- which can be the source of tension headaches. These days? Well, given the cholesterol count he managed to achieve recently -- I predict arugula, tomates, brocolli and lots of steaming technique.

Yes, Fred can cook. Still, a few months ago, we had to have The Dreaded Talk.

I had to rein in his exuberance for our marvelous local Farmer's Market. Four quarter-pound bags of Ethiopian coffee beans, just enough that we soon end up with funky blends out of some sort of quasi-gourmet necessity. We are occasional fans of the light and winy Yirgacheffe and Limmu -- though nothing will ever get between me and a good honest espresso roast, no matter the country of origin. And spices, oh Lord! The makings for a dozen curries, every sort of pepper and rendition of paprika, plus the everloving let's-try-some-of-this-stuff purchases. Not an issue of price -- rather, a problem with space. I also tend to get peeved when I cannot manipulate the containers -- you try pulling out the plastic cups of cumin and coriander without spilling the cayenne, caraway, cardamom and the other C-Spices -- like yanking the lovely white linen tablecloth from under the Thanksgiving feast and ending up with sweet potato soufflé and fines herbes in your hair.


Train? Train? Choo-choo... Okay, I am back. Ummm. Grocery shopping. And "normal."

Fred is a great shopper and through the times of having to do it alone, has his own habits and efficiencies. For me, the grocery store became a social outting more than a trip for necessities -- The List may as well not even have existed by the time I am done adding to, and altering, it.


There was a period of over two years where I didn't go to the store or market with Fred. We developed a standardized list of food and household cleaners 'n stuff, to which he would add weekly specials. It got harder over time for me to remember the layout of the aisles and which brands were desirable versus store brands -- never mind what anything cost.


I could not figure out why I was so *angry* about something so small as groceries and the act of shopping. Every week, when he was done hauling in the bags and I was helping put things up, something pissed me off. Not knowing what or why, I focused on Fred. Poor Fred.


It turned out that I was frustrated at not being able to ask for, then get, things that I wanted. Bless his heart... I would whine: "I need hair conditioner." "Put it on The List -- just tell me what kind so I get what you want..."


And... EXPLOSION! "How in Tête de Hergé do I know what kind I want? And so on and whiny so forth." This would set him up for playing Twenty Questions, not to mention failure, and having to focus his sweet ADHD-addled brain on a hundred different hair products in the middle of a crowded, noisy store. I needed the experience of walking down the aisles and seeing the products, reading the blurbs, cautions, and claims. (Oh... and seeing people, talking with people, eavesdropping, playing with kids -- I might as well have been at EuroDisney or DollyWood, such fun there was!)


The day the issues behind my behavior clarified, that is the day the plan for a car and a lift was born. Retired Educator needed to venture out, put up with the pain, get tired (because tired can be a great feeling!) -- and take responsibility for getting her own wants and needs met. Not to pretend that this was ever totally accomplished, but things are better, more equitable, since we purchased Ruby the Honda CR-V. Vroom! Vroom! She's not the 1954 MG that I've always wanted, but she is irreplacable, functional, and cute.

It took a long time to make the purchase. Even in this worldly metro area, the only conversions offered seemed to be for huge lifts in huge vans... and the Fredster was having none of that. There were many arguments and hurt feelings.

Hooray for the internet! After hundreds of searches, emails, and phone calls -- we found Bruno.

More specifically, we found this Bruno:


Curb-Sider® Vehicle Lift (Telescoping Model)Model VSL-6900 -- or as we like to call him: Bruno, because Bruno is his name-o.


Okay, so we totally screwed up and it was only by grace and an extra few thousand dollars (not a ho-hum issue chez nous -- we are only squatters in the Captain's Manor, after all) that we ended up with the perfect combination.

First, we bought the car. We bought the wrong car. Luckily, we were able to rectify our error in the space of a day. Caveat emptor, caveat emptor. Changes had been made between last year's CR-V model and the 2008 and those changes impacted the very tight measurements with which we were working. Okay, we have the car. Still a few "oops-es" -- the well in the back for the spare tire... hmm. Fred designed a modification to allow us access in the event of... but you'd have thought he was changing the layout of Fort Knox by the lack of enthusiasm and help he got from the local conversion experts. The Bruno company did not want to give a blanket endorsement of the pairing between the 2008 CR-V and their lift, so we studied and debated the specs, and decided to forge ahead.

Ummm. It turned out that my wheelchair was too big by 3/4 of an inch, and there is no wiggle room in that.

So I had to buy a new wheelchair. Bull Crap Bull Skeet of Tête-de-Hergé, my health insurance folks, wouldn't spring for a new one -- actually, I did not push the issue. I mean, really:

Hi there, BCBS of TdH! I need a new power chair because I bought the wrong car to go with the right lift, only to find that my wheelchair was too big by 3/4 of an inch. It would be nice to be able to leave the house without making the Dear Fred push me around in a manual chair (my shoulders are shot and I cannot self-propel, you'll recall). His poor back hurts and he is tired -- and me? I would like a smidge of autonomy. Oh, you don't cover autonomy? Okie-dokie. I'll dip into The Our Funds Runneth Over Account and spring for the chair... you just sit back and refuse to cover those pre-op MRIs! Fair is fair.

Finally, all the money was spent** and we delivered the wheelchair, the lift, and the car to the people who are supposed to know how to marry them together. Fred sat in the waiting room much like an expectant father unable to withstand the sights and sounds of birth.

The van guys had never done this before, of course, and ended up having to redo it three times. If Fred had not made the revisions in Ruby's back floor, she'd have come out completely mangled. But in the end, we had it -- and as far as we can tell, we are the only people in our neck of the woods*** who do: a car that meets the need of a gimp but that does not scream "I ride to school on the Short Bus."

All so that I can go to the grocery store. Like normal people.




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


*Ruby, Don't Take Your Love To Town

(Kenny Rogers)

You've painted up your lips
And rolled and curled your tinted hair
Ruby are you contemplating
Going out somewhere
The shadow on the wall
Tells me the sun is going down
Oh Ruby
Don't take your love to town

It wasn't me
That started that old crazy Asian war
But I was proud to go
And do my patriotic chore
And yes, it's true that
I'm not the man I used to be
Oh, Ruby I still need some company

Its hard to love a man
Whose legs are bent and paralysed
And the wants and the needs of a woman your age
Ruby I realize,
But it won't be long i've heard them say until I not around
Oh Ruby
Don't take your love to town

She's leaving now cause
I just heard the slamming of the door
The way I know I've heard it slam
100 times before
And if I could move I'd get my gun
And put her in the ground
Oh Ruby
Don't take your love to town

Oh Ruby for God's sake turn around


**If any of you followed my outburst at The Happy Hospitalist, let's just say that these purchases designed solely so that I could leave the house without requiring the assistance of Atlas, ate up the entire "settlement." Of course, the fact that the very events behind the settlement necessitated the purchase... Oh, excuse me! Am I lapsing into bitterness?
***In Reply to: Origin of neck of the woods posted by N. Lester on May 12, 2000

: where does the phrase "neck of the woods" come from?

Here's a discussion from February 2000. Anyone got anything new to add?

: What is the origin of the phrase "In your neck of the woods" or "In this neck of the woods"?

: : Here's my theory. In the country, there aren't any street addresses. So you literally use landmarks to refer to where a person lives. Up in your neck of the woods or up the holler. On the mountain. Down on the river.

: "Neck of the woods," meaning a certain region or neighborhood, is one of those phrases we hear so often that we never consider how fundamentally weird they are. In the case of "neck," we have one of a number of terms invented by the colonists in Early America to describe the geographical features of their new home. There was, apparently, a conscious attempt made to depart from the style of place names used in England for thousands of years in favor of new "American" names. So in place of "moor," "heath," "dell," "fen" and other such Old World terms, the colonists came up with "branch," "fork," "hollow," "gap," "flat" and other descriptive terms used both as simple nouns ("We're heading down to the hollow") and parts of proper place names ("Jones Hollow").

: "Neck" had been used in English since around 1555 to describe a narrow strip of land, usually surrounded by water, based on its resemblance to the neck of an animal. But the Americans were the first to apply "neck" to a narrow stand of woods or, more importantly, to a settlement located in a particular part of the woods. In a country then largely covered by forests, your "neck of the woods" was your home, the first American neighborhood

This is an example of a "fossil" word in which an old word has been preserved in only one or two special sayings. Short Shrift is one example. In the case of Neck the ancestor words in Old Breton (cnoch) and Old German (hnack) both had a sense of "hill" or "summit"; ie identifying a place.

Flowers in the Canyons

There are times a sister needs her brother -- and I think we all could use the memory of flowers in the canyons. All photos by TW, selected text from his December 14, 2008 entry over at American Idyll.




what i'll
give you
since you asked
is all my time
together.
take the
rugged sunny days,
the warm and
rocky weather.
take the roads
that i have
walked along
looking for
tomorrow's time,
peace of mind.
as my life
spills into yours,
changing
with the hours,
filling up
the world
with time,
turning time to flowers,
i can show you all the songs that i never sang to one love before.

we have seen a million stones lying by the water.
you have climbed the hills with me to the mountain shelter.
taken off the days one by one, setting them to breathe in the sun.
take the lilies and the lace from the days of childhood,
all the willow winding paths leading up and outward.
this is what i give.
this is what i ask you for.
nothing more.
--judy collins ("since you asked")

Wordle Challenge Rewards

As of yet, there have been no attempts to solve any of the three outstanding Wordle Challenges. [Update -- Challenge #1 was handily elucidated as being the opening line to Joyce's Ulysses.]

Then it occured to me: "Perhaps contestants are awaiting notification of their potential winnings, those money-grubbing bastards!"

Rewards will be as stratified as the challenges themselves, which range from "easy" to "difficult." Should you successfully rearrange a citation and give the correct attribution, in addition to being WordleMeister of the Day,

you win:



Wordle Challenges #1 and #2 (Easy) --

a used copy* of the work in question;

Wordle Challenge #3 (Difficult) -- a used copy* of the work in question AND A Never Before Issued, One-of-a-Kind Commendation.

*Books will likely be obtained via Half.com and, therefore, sent to you by a third party. If you're of an altruistic bent, you can forego your winnings -- and the book in question will be sent, second day air, to the starving child of your choice.

Wordle Challenge #1

Wordle Challenge #1, Easy Level: Identify the novel that begins --





Good luck!

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!