Dr. Hackenbush! Calling Dr. Hackenbush!

Originally published back in the holiday season of 2008, shortly after our summer discovery that my prosthetic shoulders were harboring pathogens, this piece returns as a 2014 holiday tribute to the medical nitwits currently in my life. Among the nitwits this go-'round? Auxiliary personnel in the billing department of the same hospital depicted below. Also, the various board-certified neurologists who are gleefully passing the buck to their neurosurgical colleagues. Again, this is a repost, Dear Reader, as the Surgical Shoulder Wars are now ended, the bacteria having defeated even the inimitable and marvelous Doctor ShoulderMan.  But the hilarious conversations with medical professionals continue, even if the laughter has become markedly insincere.

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Fred drove through driving rain and piles of slick wet leaves late yesterday (early for us!), so as to get me to the pre-admission registration process at the hospital -- before they stopped taking patients for the day.

No problem. Ruby the Honda CR-V putt-putted happily, veering down the hilly streets, passing the elegant homes on the tree-lined way.

We even managed to snag the premier gimp parking space, and this at a parking deck notorious for being full -- and gimp spaces usually taken by remarkably spry looking folk, and cars without placard or "disabled" license plate. Okay, okay, the correct line is supposed to be something like: "You can't tell by looking!" (Shit, you sure can... It takes a gimp to know a gimp.)

So, Dear Reader, what am I supposed to do when, despite my best efforts... Okay, okay, jeez, you are a tough one, Dear Reader. What am I supposed to do when, after a few lame attempts to keep things on the straight and narrow, the nurse in charge of registering me for Monday's major surgery makes mistake after mistake?

Here is a sample of our stellar communication, verbatim:

The Nurse: When did you last have an EKG?
Me: In August, the last time I was here.
The Nurse: And when was that?
Me: In August.
The Nurse: And where can we get a record of that?
Me: Ummm, here? In my medical records? (See? She managed to get to me -- my "intonation ascendante" is a dead give-away. Ar! I used to get hit on the head with a ruler whenever my "intonation ascendante" gave way. What was that dear old teacher's name? I can't remember, in large part due to his pedagogical concussing, but I loved him.)

[Choo choo! Train of thought! Choo... Back to the scene of the crime... ]

Me: Ummm, here? In my medical records?
The Nurse: Hmmm. Maybe in your medical records.

Then we tried to exchange the information about my last echocardiogram. Should be simple enough. Doctor's name, address, phone and fax numbers, date of the test.

And I have to say that it sort of mattered a lot to me for this information to be correctly received, given that they discovered an aortic arch aneurysm via that test. I had even had a serious bout of chest pain the night before, during which I was unable to banish the thought that, well, "this could be it." I made it from the bed to the wheelchair and then out to Fred's office, and he got me the under-the-tongue stuff. Three of those, five minutes later, I was fine. Still. I cannot banish that fear, not entirely. And so, I faced The Nurse full of conviction in the wonderful potential of our communication skills.

The Nurse: Where was the echocardiogram performed?
Me: In Dr. Rosenstein's office, as an outpatient. He's in the Doctors' Building over at St. Mellifluous. Anyway, it was August 22. 9:30 AM. It showed my usual aortic insufficiency due to a congenital bicuspid aortic valve. Oh, and they found a... dilation... of the aorta, where the aortic arch attaches... so, yeah, that's Dr. Rosenstein, over at St. Mellifluous. His phone is 555-555-5555 and, surprisingly, that doubles as his fax.
The Nurse: Well, I don't know what to do.
Me: Pardon? Can't he just fax the report to you? That's 555-555-5555...
The Nurse: I hate to be the one to break it to you...
Me: What? Break what to me? Does this mean I can't have the surgery Monday? They went ahead back in August, just 3 days later, on the 25th... Why is it different this time, why? [Blither and blather, generalized anxiety bursts loose and flies around the room, backward.]
The Nurse: Dr. Schrödinger passed away last week.
Me: Who is Dr. Schrödinger? He did?
The Nurse: It was very sudden, a massive heart attack. I am sure all of his patients must be terribly upset.
Me: I'm sorry for your loss? [And there it is again -- she's screwing with my intonation encore une fois, de nouveau.]
The Nurse: So I don't know what has gone on over at his office -- hmm, maybe the staff can dig up your records. I'll give Judy a call.
Me: Judy? No, no, I think we have a misunderstanding. My cardiologist is Dr. Rosenstein. And his nurse is Linda...
The Nurse: Well then, why did you bring up Dr. Schrödinger?

It was a rough afternoon. I will say this for her -- she got my blood on the first stick, for which I remain grateful. A few things worry me -- for instance, she didn't give me the red arm band I usually get -- it has something to do with blood, the blood bank?

Wow, even away from her, she screws up my intonation, long distance.

Also, I did as instructed by Dr. Boutiqueur, and emphasized my need for stress-dose steroids (adrenal insufficiency) pre-op -- intra-op -- and post-op! I don't think it was even received by any of her grey cells. "That's okay," thought I, "I will just bring it up again when I speak with anesthesia."

Except -- I did not get to speak to anesthesia, despite the fact that my intubations have been difficult
-- to the extent that, at this same facility, back in 2005, they broke three of my front teeth trying to get the damned tube in. Yes, that's right. I have had a slight attitude about their anesthesia department ever since. They paid for the dental surgery, and for the very creative partial that had to be created. But I forgot to make any arrangement for the FOUR other partials that have had to be made. Some major, and ill-afforded, pocket change has been thrown at what looks to be a never ending problem.

Also, the good anesthesia rep is supposed to tell me which of my many meds I can take come Monday morning. The Nurse asked me to take whatever I "thought was right." Okie-dokie. So I am going to dig up the green folder from my orthopedic surgeon's office for the last go around, in hopes that I have the notes from the anesthesiologist about meds.

Because I've a sneaking suspicion that what "I think is right" is probably wrong.

I wonder who it was who cleaned out all sorts of unnecessary paperwork from my office a few months back? Ar! Must have been the same idiot who thought ShoulderMan victorious in the Shoulder Wars.

In summation [Oh, sit down and stop clapping.]: Major confusion about the tests done back in August, and from where the results can be obtained -- and whether the ordering physicians are even alive; no blood being readied for surgery, despite the fact that, back in August, I had a hemoglobin of SIX after surgery; no interview with anesthesia about stress-dose steroids and historic difficulty with intubation.

She jumped all over the MRSA in the nares issue, though. Thank goodness. Whew. What a load off...

Good grief! I got MRSA at the hospital to begin with, and the Fredster absolutely refuses to don the yellow dress and blue gloves -- not only do they offend his fashion sensitivities, but he overheats. There is also a tendency on my part to NOT ask for nursing assistance when I really do need it -- I hate to make someone get all that isolation gear on for what can seem awfully minor (bedpans, pain meds, help turning -- hey, you try it without using your shoulders/arms!).

So this weekend, my ID doctor has prescribed some antibacterial ointment that I am to stick up my nose. Excuse me, up my nares.

My question? If this antibacterial ointment kills the MRSA... why is it considered resistant to antibiotics -- or even at all virulent?

I forgot to mention that The Nurse's understanding of CRPS/RSD, which initially seemed quite promising, ended with her asking about the acronym: "How do you get 'RSD' out of rheumatoid arthritis? I usually say 'RA.'"

Me, too, when I am talking about rheumatoid arthritis!
Sigh.

Calling Dr. Hackenbush, calling Dr. Hackenbush!
(Below, please find the lyrics to Dr. Hackenbush, a musical number that was dropped from A Day at the Races due to concerns about the film's length.)


CHORUS:
So this is Dr. Hackenbush, the famous medico,
You're welcome, Dr. Hackenbush...

HACKENBUSH:
If that's the case, I'll go

CHORUS:
Oh, no, you mustn't go...

HACKENBUSH
Who said I mustn't go?
The only reason that I came is so that I can go.

I'm Dr. Hackenbush,
My medical standing's very high,
Well, anyways, ladies and gentlemen, I
am Dr. Hackenbush

CHORUS
He's Dr. Hackenbush...

HACKENBUSH:
I'm Dr. Hackenbush,
As a matter of fact, to be exact,
I'm Dr. Hackenbush!

FEMALE SINGER (Judy?)
I'm sure that they'd all like to hear,
Some facts about your great career

HACKENBUSH
Although my horn I hate to blow,
There's one thing that you ought to know:

I'm Dr. Hackenbush
Which all my friends will verify
Well, anyways ladies and gentlemen, I
am Dr. Hackenbush

CHORUS:
He's Dr. Hackenbush

HACKENBUSH
I'm Dr. Hackenbush,
You never would guess, but nevertheless
I'm Dr. Hackenbush!

For ailments abdominal, my charges are nominal
Though I'm great for I've a rate for tonsillectomy,
Sick and healthy, poor and wealthy, come direct to me
"Oh, God bless you!" they yell
When I send them home well,
But they never, no they never, send a check to me.

I've won acclaim for curing ills, both in the north and south,
You'll find my name just like my pills in everybody's mouth;
I've never lost a case...

CHORUS:
He's never lost a case...

HACKENBUSH:
I've lost a lot of patients, but I've never lost a case!

My diagnosis never fails, I know just what to do,
Whenever anybody ails, I'm sympathetic too,
My heart within me melts...

CHORUS:
His heart within him melts...

HACKENBUSH:
No matter what I treat 'em for, they die from something else.

When your nerves start to rock, put your faith in your doc,
When you're sick he will stick to the end,
With the possible exception of your mother,
A doctor's a man's best friend!

CHORUS:
Yes, a doctor's a man's best friend!

HACKENBUSH:
A doctor's a man's best friend, whoa-oh,
A doctor's a man's best friend,

HACKENBUSH & CHORUS:
A doctor is a man's best friend!

HACKENBUSH:
Right or wrong, wrong or right,
Night and day, day and night,
On his call you can always depend;
With the possible exception of your mother and your father
And your uncles and your brothers and your nephews and your nieces
And your sisters and your cousins, whom you number by the dozens...

HACKENBUSH & CHORUS:
A doctor's a man's best friend!

i love my go-to-guy

my eyes are almost swollen shut from self-pity, since my self-pity, combined with my rising fever and 9.9 out of 10 ranking on the retarded pain scale, equate to nonsensical tears but my mind is relatively unburdened, thanks to an hour and a half spent with dear, sweet, smart, inventive, superior go-to-guy, my "concierge" doctor that you'll have to shoot me to give up.  yes, i am poor -- and advocate living within one's means -- but i have budgeted for what i consider a compelling necessity, a medical gate-keeper.

anyway, his eyes lit up as he hit on an idea of how to work our peculiar situation and magic with the HMO i am now enrolled in, and with which he is not affiliated.  but the flat fee that i pay each year to "retain" him, well, it retains him.  in dire circumstances, and we are familiar with them, having him around... pays off.

anyway, we went over blood work, we devised a plan to so mesmerize the HMO and the physician i will have to choose in their network, and then...

we decided it was time for me to have a hospital bed with a trapeze. that will make things easier for me, but is one of those moments, you know?  the "oh, yeah, i am ready for disease and disability to reduce me a bit farther." reduce me, constrict me... also, though, on that sliver of pragmatism to which i cling -- it's a change that won't reduce me to tears when i think of how to turn over or sit up or, the ultimate!  when i think of how to both sit up, pivot so as to sit on the side of the bed, then stand and walk to the bathroom.

i went to my doctor's appointment without having brushed my teeth, much less showering.  that caused mucho boo-hooing on my part.  i am nothing if not ridiculous.

it's going to take a while to get the new doctors on board ("you realize they are going to take one look at your history and my summary of the last few years, and either take off running, screaming, or try to reinvent the wheel by ordering every test under the sun, don't you?") and so it will take a while before my carefully put together bedroom gets torn apart.  captain haddock is going to have a cow.  marlinspike hall's beautiful and antiquated décor -- and by "antiquated,"  i mean full of gorgeous and one-of-a-kind antiquities -- has never been so abused.  maybe the haddock corporation will see this as the last straw and put me and my belongings in a pile by the barn, just beyond the moat, and the reach of the drawbridge.  maybe the carnie rehab facility, right now mostly limited to cirque du soleil and local freak show addicts of the finest and most acrobatic kind... will take me in.  i could be a kind of barn mother hen.  and heck, who knows what monumental one-of-a-kind gymnastic moves i can come up with when provided with a hospital bed and a trapeze? eh?

see?  it's all rather too much to take in.

so we're cooking a chicken pizza, and plan on watching something mindless. dr. phil, or one of the multitude of law and orders.  maybe a cold case, or judge judy.

go-to-guy also rapidly and kindly filled out my POLST form, so i am covered -- live and let die!

my mind is jiggling like jello.

© 2013 L. Ryan

Baking Scones or Rotting Turnips: You Be The Judge

SPEEDO

I *know* that it is poor form (Oops! Someone has been watching too much of the London Olympics on the telly.  I wonder what's for tea this afternoon.  Is that the aroma of baking scones wafting my way or is it the bag of turnips I let rot on top of a bag of potatoes and a sack of fresh garlic?  We better have some clotted cream and jam, either way.)...

As I was saying, I know that regaling you with emails is the lazy woman's blog tactic, but this is the best way to bring you up to date as to what is happening to moi at the moment.  I could lie and say that I just hate repeating myself, but, puh-leeze, my Readership wouldn't fall for that.

So... Youse Guys already know how much I rely on the judgment of my MDVIP Go-To-Guy, otherwise known as a pseudo-concierge set-up with a spot on (Heh-heh) internist.  Well, here's the latest, and please keep the info in mind should my blog posts get even weirder, if I'm not batting on a full wicket (ar ar!).

I think I may take a break from the shivers and do some imaginary badminton.  Or rowing.  But if I choose to swim around the moat, it'll have to done nekkid, as I've heard those swimsuit contraptions are nearly impossible to put on without Randy from Say "Yes" To The Dress.  Check out how hard it was for Summer Sanders... and then die laughing thinking of me trying to get even one thigh in the right spot of fabric.

FIRST EMAIL, FROM ME TO MDVIP GO-TO-GUY, YESTERDAY:


i had my PICC line pulled tuesday.  still having fevers, sweats, chills, spasms, the whole spiel.  dr.b was out of town, saw his PA jacqueline.  when i asked what the plan was now, i was told "there is no plan." of course!  what was i thinking?


is this slow drop in hgb/hct anything to worry about?  i know it's not enough to explain fatigue, but i am so tired.  they drew labs again this week to see if it is still dropping and i am to show up for one more appt next week.




7/3
HGB 11.1
HEMATOCRIT 34.4
CRP 1.27 (EXPECTED < .8)


7/10
HGB 11.2
HCT 34.9
CRP  10.49 


7/17
HGB 10.8
HCT 34.3
CRP 1.73


7/24
HGB 9.9
HCT 31.2
CRP 2.28 


i see dr.d today and will see if i can get him to somehow pave the way with next week's appt with dr. s's PA.  i expect that appt will be a bust, but who knows.


i don't know what to do about my eyes... dr. k probably thinks i've disappeared.  ID informed me that p. acnes is one of the most "catastrophic" of all infections after cataract surgeries (well, *of course* it is!) and that she probably will want some assurance that there aren't any p. acnes colonies hanging around.  right-o!


yesterday, i briefly blacked out twice, both times while walking to the bathroom.  each time, i was able to forestall any severe damage or need for 911 by simply landing against the wall, leading with my head.  so my head hurts, but i'm fine.  i knew that my brain would count for something one day.  if it gets worse, i guess i'll Pick-A-Specialist, probably dr. m.


i hope you had a restful and refreshing vacation.


what are the odds that i could get dr. d to come HERE, versus wickedly tired fred and cheery me hauling ourselves out to the airport office?


profderien,
laughing all the way to hell


SECOND EMAIL, FROM MDVIP GO-TO-GUY TO MOI, YESTERDAY:

The HGB dropping below 10 could cause some fatigue. The main concern with anemia is to be sure it’s not coming from GI blood loss.

Have you seen blood in your stools or black, tarry stools to suggest older blood from the upper GI tract? If not, the anemia may be from suppression of your bone marrow from your chronic infection. That will only improve as the infection improves.

The blackouts are another concern. Please rely on your walker or scooter more since you have the anemia. You are at increased risk for blacking out and falling.

Please keep me updated on the labs, etc. I would also hold off on Dr. K until we know there’s no infection.

THIRD, AND FINAL OF THIS SERIES, FROM ME TO YOU-KNOW-WHOM:


dear dr. MDVIP Go-To-Guy,


i've put in a call to i.d., trying to get tuesday's lab results.  have both called and emailed.  i am feeling pretty awful, temp got to 101, dropped to 99, now back to 101, but more significantly, to me, i'm having chills, feel all woe-is-me-weepy, and exhausted.  there's been no feeling like passing out, just a feeling of distance/unreality.  and a headache.


if things get worse, i will contact them again, first, using the "emergency" line (my understanding is that dr. b is out of town), and do what they say.  if need be, i'll have fred drop me off at the Lone Alp ER.  unfortunately, he refuses to stay with me in the hospital any longer... he just hates that environment, and, it seems, me,  in that situation.  


i'm just letting you know in case there is a communication failure... for instance, when i had to go to the ER a few weeks ago, the EMTs reported that they picked me up in a "GP's office" [instead of the infectious disease infusion center] and that the problem was "a dislocated shoulder." i thought fred was following us over there but, no, he just got in the car and went home.  i was shivering so much i couldn't correct anyone, but wish i had a photo of the face of the x-ray tech who immediately filmed my shoulder.  she told me, "uh, we need to do this again because i seem to have cut off part of your... [long pause] ... clavicle."  sure, i could have told her there was no shoulder on that side, but why muck up a perfectly good learning opportunity?


it's often like that kid's game, "telephone," where you pass around a piece of information to see how changed it is at the end.


i hope to not be calling, but thought i'd give you a head's up.  thank you, thank you, for your good care and forbearance.  


much of that forbearance is put to use on these emails, i am sure.  sorry but when i feel this sick, i talk and talk.  i am afraid, and that's what i do!


so i at least hope that my verbose communication sometimes makes you smile, even if it kills an extra few minutes of your "free" time.


hey, j (j is his Super Nurse)!  come do private duty with me this weekend?????  movies, popcorn, wheelchair races?


oh, and the gut is fine, no obvious bleeding.


bowing out of another graceful communication,
profderien

So there you have it, Sweet Readership.

And as is always the case, I feel better already.

Cheerios and Fruitloops, Clotted Cream and Jam for all.

STOCKHOLM 1912

Compassion and Goodness

One of the things I do quite a bit these days is cry.  If I did it prettier and without a runny nose, I'd say that I "weep," but who am I kidding?  I have been known to blow my nose on my tee shirt and wipe my eyes with the back of my hand, flicking the moisture willy-nilly, or letting Dobby clean me up.  He does a great job, even if it does mean that I have to go disinfect myself afterward. He gives a bit of a cheshire smile when I attempt a purr. If someone, even a cat, shows you that much love, you don't interrupt so as to make a critique.

Despite the growing proclivity for leaking saline, which, given my fevers, I can ill afford, emotional stuff builds and builds until bursting seems the only option.

 From Compassion and Goodness

That's when having a best friend sitting close, gently, with savvy, holding my CRPS hands just right -- not stroking, but holding firmly -- would be nice to have.  That I don't is entirely my fault, but doesn't keep me from that morsel of self-pity. I could change this friendship dearth in a mere moment, but I don't, and that's stupid.

Add it to the Stupid List.

Back when I tried to help out some in the fight against people being homeless or so flirting with homelessness that their days were built of bricks dense with stress, back when I spent the day encouraging and fussing, modeling and experimenting with young minds, chalk in hand, back when rushing home to make simple pasta, marinara, music on, back when... I never cried, wept, or had many ocular leaks at all.  The lesson?  Stay busy, do what you love, give back, and be open to the day's unexpected gifts.  Lacking a means of transportation, the men at the shelter welcomed me onto their duct-taped, prayed-over bus that left at 5:30 AM sharp, and got me to the closest metro station for the second stage of my journey to school.  They were sleepy sweet, bitter sharp, funny, depressed, hopeful, a boon one to the other, and to me, the hitchhiker.  It got more complicated as I lost mobility and my scooter joined the dangerous pile of wheelchairs and walkers that we very illegally stashed in the doorwell.  But no tears, not even from the men who surely had reasons to dissolve.

I need to recreate that experience -- without the "elderly, sick, and/or disabled" men without physical or emotional shelter to call their own, without the ensuing two-hour trip to school, without the talented teens on hormone overdrive (and their equally uneven instructors), without the pots of roiling, boiling water and rotini, the rush back to the shelter for evenings of laundry and serious competitions of hearts, spades.  In between hands, grade a paper here, grade a paper there.

Please don't stop, don't allow yourself to be stopped.  If you pause, even, covet the busy-ness with love, and return to it refreshed.

Should you, though, find things rough going, and going rough for too long... Should you not feel rested after resting... Should you lose the joy in passing as yourself through hard things, remembering your swollen feet on the crowded platform, and not the too-cool-for-school fourteen year old goth giggling with a cardiganed lady who, given their shared nose stylings, must be his grandmother... Should that happen, don't stop, still don't stop, even if it means a decade or so of traveling to a hard cadence, of walking from the same points back to the same points.  

If you've read much of this odd blog, you will have found the occasional reference to a man called "my MDVIP Go-To-Guy." He's a doctor who stepped out of most of the madness that has overcome medical practice, deciding instead to have a smaller practice, dedicated to wellness and the spending of adequate time and attention to each patient.  I remember him saying that he wanted to enjoy practicing medicine again, that he was spending excessive time on paperwork and insurance companies and we all know to what he is referring.  I suspect he is a Republican, but I forgive him.

When I had to go without insurance because BCBS priced me out of coverage (They raised my premium four times in a year, to $1513/month, plus a hefty deductible;  They simultaneously began denying me coverage for procedures that needed repeating, like cultures to identify nefarious infective bugaroos.)  Left uninsured with an active bone/prosthesis infection, my MDVIP Go-To-Guy got me through that time by researching the cheapest drugs, by being so vigilant that I never once had to be hospitalized.  He was often praised with the highest praise we have here in Tête de Hergé, being named "a prince, a peach, a pear." 

But when the Affordable Care Act passed, with its life-saving provision of PCIP (The Pre-Existing Condition Insurance Plan), I had to have the infections addressed by a bevy of specialists, the bevy-est of micro-managers who saw me as an eyeball, a shoulder (sometimes left, sometimes right), sticky red blood, and ill-behaved connective tissues, some odd neurological disorder, and a twinge of an attitude.

Essentially leaving the attentive care of the prince, the peach, the pear for Infectious Disease Dood, Shoulder Guy, and a host of White Coats that often didn't even bother to introduce themselves before billing me $300 for scribbling in my chart after sticking their pointed heads inside my hospital room to swap howdies, I felt very much left on my own, and helpless.

What was the plan?

Who was in charge?

Why won't you answer my questions?

Because he accepted email communication, I began a process designed to keep my MDVIP Go-To-Guy up to date on the goings-on, because Lord knows, in this technical age, it's nigh unto impossible to fax, scan, email, or convey telephonically any results, plans, ideas related to my care.  We were dealing with an infection whose bacterial, viral, or fungal basis refused to grow in the laboratory, despite being abundantly evident in surgery.

But then, you know all that old story.

Lately, I have abused the email privilege.  Well, honestly, I don't think I have, but I know that most would say so. 

I don't know what I would have done these last few weeks were he not there at the other end of these garbled messages.  He is limited -- by good sense, and by, I am sure, legalities -- in how he can respond.  But that he does respond, and hasn't yet ordered me put in a special quiet quilted-walled room in some out of the way facility?  Well, it's life-saving.

But I do violence to him with my words -- you've seen me do the same here, you know what I am capable of, and how I excuse myself by calling it "honesty." 

This is the wound I inflicted yesterday:

Hi MDVIP Go-ToGuy,
I have to thank Nathalie at Dr. G's for suggesting that I try to get you to have more control over the specialists that are handling my care.  They're great, talented, and all have tunnel vision.
This morning I had another experience like the one last Tuesday, a rapid and distressing temperature spike, with dripping sweats and a heart rate ranging from the 50s to 120s -- within a half-hour of doing my first antibiotic infusion of the day.  You'll forgive me, but I had already had 2 Endocet for pain (=650 Tylenol), so I dug up my bottle of ibuprofen and took 800 mg, got in bed under a heavy blanket, and just got through it.
The second infusion -- about 2 hours later -- also brought on a reaction, but a smaller spike.  I hit 102, nothing near the 103.5 from last week, but it felt pretty awful.  This time I added ice packs.
THE PICC LINE IS INFECTED, it has to be.  Both of Dr. B's PAs, Susan and Jacqueline, came to that conclusion last week, but he overruled them, saying that even if it is, the cefepime should "cover" me according to whatever grew in the blood cultures.  It only occurred to me today to wonder if my aortic valve is at risk.  Wouldn't that be a hoot.  But there's no "hardware" in my heart, so blahblahblah!
Outside the semi-crises that occur with infusions and flushing the lines, the rest of the time, I am exhausted, in extreme pain, but forcing myself to be an admirable domestic.
The pain in what-was-formerly-my-shoulder is worse.  Now this could be because I am forcing its use, trying to grow some of that scar tissue that supposedly will one day function like muscle.   But who knows?  The hip pain is now in both, with the right remaining much worse.
The spasms are back, as well as blood sugars that defy logic. That's at 50 units of 70/30 twice a day and sliding scale before meals.
I'm going to put my four years of experience with prosthesis/bone infection to the test, go out on a limb and cry, "infection!"   And my specialists are all going to look at each other but no one is going to look me in the eye.  If this is going to kill me out right, or some complication of it, just tell me  It won't be a shock.
So long as I have an ID doctor who doesn't even check my weekly CBC results -- only blood culture results matter -- and a super shoulder specialist who only looks at... shoulders, etcetera -- I don't have a chance.  Yes, I believe there are some of those nasty bugs in my hips, so making the appts to see Dr. S's team is smart.  But I'm exhausted, depressed, and tired of telling this story to doctors who then look at ME as if I'm crazy.
I can tell you now that he'll order a "tap" of the hip under guided fluoroscope, they won't get anything to work with, and he'll say, "well, everything looks fine..."  I've had 10 taps, without results, that turned out to all be in infected areas.
Speaking of crazy -- I think my brain is infected, or that CRPS is having more of an impact up there than I expected.  For the first 15 minutes or so at the start of every episode of spasm, I am suicidal.  That's not an exaggeration, I am not trying to get attention.  It lasts almost exactly 15 minutes and it is a real struggle.  Then, I cry a bit, and it's gone.  Not the spasms, of course, they hang around for hours!  I use the mantra of "it's only 15 minutes," but one day, that 15 minutes is going to coincide with something else, and that will be that.
I've passed out twice this week, both times during a transfer from bleeping wheelchair to the bed -- if you have to have a brief black out, doing it on the bed is a good choice.  I am trying to drink more, because it's got to be dehydration...
Beyond a puerile "please just make it all stop" request, is there some way to draw up a plan, slow things down?  I always feel like I need ID help right when they have checked off their to-do list of 6 weeks of X and 4 weeks of Y -- because I go by symptoms, and the rousing sense of failure that hits when they say "we're done, call us if you need us!"  Same deal with Dr. D -- now that the shoulder is gone, why should he care that the pain is worse and eerily familiar to earlier pains from infection?  And, trust me, there's no one to call during my 15 minute dalliances with suicide -- or if I did call someone, it would be a CYA response.  Who do I tell that I am just crazy enough to think my brain is infected?
So... when you were signing up hale-and-hearty patients for the preventive medicine you were hoping to practice via MDVIP, you must have rolled your eyes to see that I wanted to tag along, eh?
Ah -- the worst fever symptom of all?  Over 101 degrees and I want all physical issues solved, as of yesterday.  I am also rude, weepy, and annoying, even to myself.  I hope to avoid a hit of spasms with these fever attributes -- I wouldn't be able to find a single reason to justify my existence, not in a mere 15 minutes.  My reason for living is Fred -- not love of Fred or even fondness of Fred -- but the need to be able to leave him a little more money than I have right now, and with organized finances, and a house in good repair.  Otherwise, he will be lost.
So what can my MDVIP Go-To-Guy pull out of his hat to help this mess?  No, thank you, I don't care to speak to a counselor or a psychiatrist -- that detracts from my primary objective of accumulating massive amounts of wealth to bequeath the guy snoozing in front of his computer, oblivious to all...

This time, I thought, I might well get a "cease and desist" courier-delivered letter on fine linen stationery, thanking me for having made his practice so much fun and encouraging me to go spread enjoyment elsewhere.  The main thing, you're just not supposed to use the S-word.  I use it and use it often, as part of my effort to use the most appropriate word for sign/signifier/signified/referent.  I got bit with the Saussure bug.

You Readers are pretty sharp.  You might well have already imagined MDVIP Go-To-Guy's response, which I just got, right in the middle of a weep.

Sorry for the late response. To be honest with you, I read this late last night but was so overwhelmed by the email, I wasn’t sure how to respond. 

Your issues are clearly not simple and this is way out of my expertise.
The only thing I can suggest is that I call and speak with Dr. B myself to get a clearer understanding of what his plan is. 

Unfortunately, I am leaving town in the morning for a much needed vacation...
I will try and call him [on my return].

I’m sorry that I cannot give you any better advice than this but I truly have no other ideas of what to do. 

In my 23 years of practice, this is clearly nothing I’ve ever dealt with and I must rely on the specialists for advice and guidance.

The office will be open with Dr. K manning the ship in my absence. J will be here.
If you’d prefer to see me for an appt when I return next week, I’m happy to see you.

Like I said, "a prince, a peach, a pear." 

Just being heard, feeling heard, relieves the pressure that threatened to make a protoplasmic mess all over my clean floors.

So I was able to fire off the last word... 

All right, MDVIP Go-To-Guy, I've hit upon a brilliant plan.
You need a vacation (of that I am sure!).  I need a vacation, too.
So I'll make some version of one... maybe do a virtual world tour, immerse myself in the Olympics, remember how to laugh again.  Renew some of the family relationships that oddly seem to start up again after someone dies (very perverse, that).
Maybe I should try doing a good deed now and then.
So... let the vacations begin, PICC lines, and brain dysfunctions be damned!
You are possibly the best doctor around -- but don't get a swelled head.  That's MY purview.
Thank you.

So once I publish this, you will have, and I will have, proof tangible, bolded and in color, that I am far from alone, far from uncared for, and that fighting that 15-minute fight -- for now -- is worth every bit of the effort.

a little sepsis here, a little sepsis there...

hey, all.

fred gently got me into our dear ruby, the honda crv, and whisked me home from the hospital this evening.

i was pretty darned sick last weekend, worse on monday, but knew i had the weekly infectious disease appointment, so i figured i'd whiteknuckle it until then -- 1 pm, tuesday.

tuesday, my temp was 99.6 when i woke, but i was feeling clunky as all get out.  i did the morning routines, including infusing the i.v. antibiotic.  an hour or so later, it was 103.5 and i ran some clothes through the dryer  so that i could pile them on me and get warm.  you surely felt the world shaking about then.

but i could make it to 1 pm.

we got there, me with quilts, and involuntary tears, fred just tired of it all.

the receptionist informed me my appointment was at 11:45.  i told her i was sorry and that i was really, really, really sick.

so they found this very nice PA with whom i had never worked and he said "whoa, girl, you're sck."  i said, "sniff...  i know... sniff."  he got the head dude, who looked me over from a safe distance, and said, "man, you must feel like crap." he then outlined my two options:

1.  check in across the street at Hotel Hospital, OR
2.  while i was in his office's infusion center, i could let them "juice me up" with some i.v. fluids while they did labs, changed dressing, etc.

oh, and since clearly there was some new infection in play, i could also receive the first infusion of the new drug he was adding.

i opted for getting juiced up.   it sounded like the closest thing to sex that i'd been offered in... a while.

but as i settled in back in the infusion center, things got harder, then easier, then harder and harder.  as the last of the juice ran in, i went crazy.  the pain was beyond belief.  i couldn't breathe, everything and something was very wrong.  "call 911," i finally yelled and did curly-q thingies with my wheelchair.

the staff at id-dood's place is wonderful but i am quite sure i frealed everyone out.

and blah blah -- i was taken across the street to the ER by stupid ambulance.  can't wait for that bill.

at one point, we had three abx running.

but my temp came down a degree every 8 hours or so.

for the second time in a few weeks, i got culture results:   blood culture results came back positive. nothing like a little sepsis to make life interesting.

anyway, i am home again.

Propionibacterium acnes

After 10 surgeries in 3 years, and probably hundreds of attempts to grow cultures...


an intra-operative deep tissue culture sample finally grew something!


As was often opined, the bastard culprit turned out to be an ordinary ugly old bug that we all have on our skin.  Propionibacterium acnes, however, just adores creating little thriving bio-communities on orthopedic hardware.


It's a bear to get rid of (as the last three years have surely shown) and I am down, essentially, to one antibiotic.  


Somehow, though, just having a name and imagining an ugly little butt-smushed smarmy face to it makes the battle seem more... winnable.  


There's some suspicion (mostly mine) that the ugly little butt-smushed smarmy faced bastardized community piled into a stolen VW bus and made tracks to my right hip.


One war at a time... One war at a time.


So the hope now is that my liver enzymes and muscles will tolerate the antibiotic for about 5 more weeks, followed by signs of victory, like a low white count, and normal ESRs and CRPs, no fevers, and all that stuff.


Then it's on to the hip!


did i make the right decision, to remove the shoulder?  tell me i made the right decision...  but i ain't removin' no damn hips...

Revenge of the Port-a-Cath

I was happy Friday to have my port-a-cath removed.  The procedure was quick and easy, requiring only local anesthesia, and it went off without a hitch.

Just because, the surgeon snipped the tip off of the port and sent it for cultures.  It looked fine, he said, no overt signs of infection.  He couldn't fathom why it had so often failed to do its duties of making infusions and blood draws "stickless" affairs.

It required some stitching, and he covered the area with glue, as well.  Being such a small deal, he said I could shower that day, even.  There was no necessity for a follow-up appointment, as the stitches are the kind that are simply absorbed.

Everything has been pretty much the same with me over the last week.  Unexpected extreme fatigue, to the extent that I sometimes don't have the energy to sit up in the wheelchair.  Fever, from low grade 99 to 100, to a few days at or above  101.  The definitive return of CRPS dystonia, and the screaming ninnies, as a result.  The latest weirdness involving these spasms is that on my left side, they feel as if they issue directly from my left hip.  The pain within that joint when the left leg is going at it is unfreakingbelievable.

I burst into tears on the way to the hospital, trying to explain to Fred that I go from feeling emotionally stable, quite okay, quite in control, to absolute despair when the spasms start.  This shift can occur in the span of 30 seconds.  It must have something to do with the area of the brain involved in dystonia -- but ask me if I care when the desire to leap out of a very high window sets in.  I know that this reeks of self-pity and poor character, but the suffering involved -- in this, my particular case and instance -- is beyond what I can handle.  I keep saying that, hoping some insightful health care professional will hear me, understand, and treat the dystonia as something close to an emergency.  Because it is, and one day I just will no longer care that "this, too, shall pass."

Uhhh, right.  So the surgeon removed the port, stitched and glued me back together, sent the tip for cultures, and poof, we were back home within three hours.

It bled a little bit, which was expected.  It itched some, at which point I carefully peeled off the dried glue.  I did not shower Friday, having done so before the surgery, and -- frankly -- showering having become a scary endeavor, took a very thorough sponge bath yesterday, instead.  I am going to shower this afternoon, once I've whipped the Haddock ancestral home, Marlinspike Hall, into a spick-and-span* state.

* Etymology:  From spick-and-span-new (literally “new as a recently made spike and chip of wood”) (1570s), from spick (“nail”) (variant of spike) + Middle English span-new (“very new”) (from circa 1300 until 1800s), from Old Norse span-nyr, from spann (“chip”) (cognate to Old English spón, Modern English spoon, due to old spoons being made of wood) + nyr (“new”) (cognate to Old English nīwe, Modern English new).^[1] Imitation of Dutch spiksplinter nieuw (literally “spike-splinter new”)^[2] , for a freshly built ship. Observe that fresh woodchips are firm and light (if from light wood), but decay and darken rapidly, hence the origin of the term.

During yesterday's wash-at-the-sink, it became clear that there was some inflammation around the small incision.  I cleaned it well, using the left over ton of supplies from the weeks of wound care for my shoulder. Wound cleanser, sterile supplies, sterile technique.  And a dab of triple antibiotic ointment.

So this is what it looks like now.  Any suggestions?!  [Just kidding.  If it gets a lot worse today, I will ruin some medico's Sunday afternoon by calling.  Otherwise, I'll give the surgeon a buzz tomorrow.]

I just want something (anything, almost) to go as planned.

"Thank you" will do nicely

I don't think anyone will hear my last words. I will probably be in the bathroom, water running, bubbles in the air -- that odious cheap perfume of the cheap shampoo I begged for, everywhere, in every steamed-open, gaping pore.

Or my audience will consist of cats. A faithful audience and not one to regret, however, I estimate that one of the three currently in residence suffers from a hunger so gnawing that he'd eat me within ten minutes of my surcease. Sure, he'd hold the chipped and sharp-edged round make-up mirror to my mouth, hoping against vapor. Lacking any sign of life, the felines know the ultimate test and Dobby will surely wave a mug of steamy dry-processed Haile Selassie from the Dara area of Ethiopia's Sidamo province under my deceased nose.

Yes, I have been dreaming of a trip to the Farmer's Market Coffee Pavilion.

If Fred finds me, I predict he will promptly take a nap -- after tossing a sheet over me, shooing away the cats, and shutting the door. If I am in the bedroom, he'll crash on the sofa in the library. Or maybe on the futon up in the Computer Turret, though that's a bit far to ask someone in the early stages of mild euphoria to travel.

Anyway, presuming myself, and my self, alone, to be my ultimate audience, what will I say, I wonder? I decided to practice this morning, though I stress to you, Dear Reader (You seem so far away, so dim... come closer!), that this is not theater. No "magic if," no method.

First, though, I laugh, because what I just said to you, I said to myself, as well, and realized how foreign, how divorced from who-i-am is the idea of no theater, no "magic if," no method. Because the first thing I did was the first thing I always do when beginning any inquiry: I begged the question.

Begging the question (Latin petitio principii, "assuming the initial point") is a type of logical fallacy in which a proposition is made that uses its own premise as proof of the proposition. In other words, it is a statement that refers to its own assertion to prove the assertion.

No, no need to get all Aristotelian on me, now.  All I mean by that,  is this:  Why do we say anything?  At any time, to anyone, including to our lone selves as sole interlocutors?  I am not begging the question; I am raising others.  Try and stick me, and in my dying moments, too, with a logical fallacy, will you?  If you applied yourself, I am sure you'd realize that what I'm actually guilty of is... Applied Circuitry.

Oh, I am cracking myself up, and I haven't even started yet.  You don't like "circuitry"?  Okay, use "circuitousness," instead, but it's an ugly word, and I mean that in the nicest way possible.

The first thing that comes to mind is that I will utter some strange neologism, or, as I just demonstrated, I'll misuse some established idiom -- not trying to be clever, just doing what I've always done, cavorting in the margin.  Most likely, whether neologism or perversion, it will come out garbled.  Gobbledygook. 

For some reason, I also think it likely that I will say "Who knew?" --  then give half a laugh, and croak.  Dying mid-laugh has a certain appeal.

What is certain?  Well, it won't be drawn out, or consist of the terribly polysyllabic.  One of the first things to go, you know, is the vital blood supply to the tongue.  So even if your brain isn't completely anemic, your mouth most likely won't cooperate much with complicated goings-on at the tail end of life.  In the bathroom, whiffing lavender suds, wondering who will clean The Manor now, and just generally at wit's end, I won't be inclined to recite the Krebs cycle.

Everything changes, of course, if I am not alone.  Then, be my company animal or human, I think there is only one thing to say:  Thank you.  And maybe, though it seems a little persnickety, "Good luck!"

I would not, though, say it to all life forms.  I would not, for example, say it to an ant, and never, ever to a roach.  O God! Save me from a roach, there at the last!

There are many of you who think I am missing the point.  Do you accuse me of circumlocution, and of having dropped the point off mid-escapade?  Or do you think I never knew the point, and my circuitousness is a failed attempt to mask how utterly lost I am, and will be?  Shouldn't I speak to God, at the moment I come undone?  Well, smarty-pants, that may work for you but I've always felt immensely silly, forcing words on God.

I just don't know.  I do think that last words, thoughts, and expressions don't carry the import that the living give them -- unless, of course, you're identifying your murderer, making a heartfelt confession, or telling Fred the password to the Fidelity account.

We must try to have everything said -- an option that allows for different last words and differing final conversations, attentive and thoughtful, each. Failing that, I think "Thank you" will do nicely.

Today, right now, I am not convinced of the inappropriateness of laughter, or of the stony nature of silence.

In all likelihood, my ending will encompass, but not reflect, the surprise of oncoming traffic, the shock of a gun barrel, or the crushing pain of an infarct.  The blessing of fading into sleep, quiescent, seems a childish hope now, but I do still hope for it. Slipping away during a nap could save me a lot of embarrassment.

The one where Buddy goes to the vet...

Shhhh!  I'm hiding out in the Computer Turret.  Buddy the Freakishly Large Kitten, who has the claws to match his moniker, needs rounding up for his first visit to the vet.  Not his actual first, of course -- it's his actual second visit, but the first happened without any muss or fuss, as he was not yet freakishly large, and was, in fact, very tiny, and lost in that peculiarly endearing stupidity of extreme-babyhood.

Buddy can con you in a New York minute.  And if his somewhat vacuous expression doesn't start you down the yellow brick road of his various diversions, he has those claws.

He exploits the "awwww..." factor like nobody's business.  Just yesterday, he sauntered up to me as I lay in my come hither pose, draped across my wheelchair, praying for death.  I wasn't feeling so hot.  Well, I was HOT, but, oh, never mind.

He doesn't so much meow as coo.  Maine Coons must be the mockingbirds of the feline community.  So he coos at me, and lifts an eyebrow.  I'm his bitch, and he knows it.

My shoulder hurts like hell.  It hurts worse since I discovered, yesterday morning, the Return of the Fistula (same one, same spot, same everything).  But no matter, I'm Buddy's bitch, and I know it.

Through a series of incisive questions, I determined that Buddy required that a certain ball, the soft, orange one, with the weird spikes, be retrieved for a rousing game of Fetch.  Odd, he usually reserves Fetch tournaments (he and Dobby are Fetch aficionados of the First Order) for the moment I enter REM sleep, which explains my dearth of dreams.

Ouch.  I am not sure that dearth can handle a personal possessive pronoun.

The ball in question turned out to be tucked under the edge of a Persian rug.  The Persian rug was under an antique console table.  Under the antique console table, also weighing down that expensive bit of carpet, was an oversized brass-studded leather Ottoman ottoman, filled with huge rocks.  Just kidding.  No rocks!  Oh, and on the console table?  Two huge celadon vases and an 800-pound concrete Laughing Buddha.

It's not your average graceful, eye-soothing console table.  Lovely turned, tapered legs, yes. But a loud, look-at-me marble top and a heavy, thick, very rectangular plinth that doesn't give the turn or the taper of the legs half a chance.

Yes, I have given that particular Haddock acquisition to the Manor a great deal of thought.  You would, too, if you had moved it, twice, while in a wheelchair and with only one functioning arm.  First, of course, I moved the Ottoman ottoman.  Those Turks and their darned footstools.  Actually, my extensive research shows that the word ottoman came into use as a designation for these bits of furniture because of the early 19th-century affinity for all things deemed oriental, and the act of reclining was considered, of course, oriental. [Don't look at me.  I just report these things.]

Proof that everything is political?  Even this ethnocentric perversion of simple furnishings turns out to be based on imperialist designs, in this instance, by one Napoléon Bonaparte, who molded the codification of orientalism in art with Description de l'Égypte, ou Recueil des observations et des recherches qui ont été faites en Égypte pendant l'expédition de l'armée française (English: Description of Egypt, or the collection of observations and research which was made in Egypt during the expedition of the French Army).


He was a great codifier, Napoléon!  Still, although his failed attempt to colonize Egypt and Syria inspired a wealth of artistic propaganda, napoleonic heavyhandedness was perpetuated by conflicts that continued throughout the century: first with the Greek War of Independence, then the French conquest of Algeria, and, in the 1850s, by the Crimean War.



I'm just saying.
For a completely different point of view, steeped in a more modern sense of the mercenary, read this.


As for the West and our affinity for glossing?  Well, Egypt, Turkey, Egypt, Turkey, who can tell them apart?  What matters is that all these [near] Eastern folk love to RECLINE.  

"What can Egypt be like?" wrote Eugène Delacroix, "Everyone is mad about it."

The Women of Algiers in Their Apartment, 1834
Eugene Delacroix

Right. So!
We're out of coffee, in case you were wondering.

Anyway, Buddy finagled the recovery of his orange spiky ball, and I got to take some extra pain medication, as a result.  In the process of checking out how The Wound had fared during my furniture-moving, vase-lifting exploits, what was kind of obvious was the Return of the Fistula.  Those of you who are detail-oriented may remember that The Fistula first came to my attention following a similar instance of exertion, after The Clearing of the Back Porch.

I crack myself up.  I knew that I'd regaled you, Dear Readers, with the Tale of the Back Porch but had no idea that there was a freaking Fistual Thread!  It appears I haven't consigned The Fistula to further literary recognition since November 7, 2011, when I noted, in my usual fashion, so devoid of drama:

These are the available choices:    
Either my head is going to explode or I am going to cry.

In June 2008, when I began elle est belle la seine la seine elle est belle, it was, mostly, a response to that same immense frustration, and my attempt to both restrain my tears and keep my head.  I thought that throwing fanciful and funny verbiage at my problems might release enough of the stultifying pressure for my lacrimal glands to dry up and -- should my head actually explode -- I wanted to have the documentation required by Guiness World Records.

I'm a Guinness junkie.  That's where I first read about SHR, Spontaneous Human Combustion.  One of the first things Fred shared with Abbot Truffatore and Father Anthony, over cocktails, was my firm belief in the reality of Spontaneous Human Combustion. He even requested some sort of ritualized intervention, as the three of them sat there, tying knots in cherry stems with their tongues.  Yes, Fred unwittingly polluted my chances with those Cistercian Power Brokers. I didn't get to see The Holy Foreskin, their most prized relic, until months after he did.

Does no one else see the hypocrisy?  I mean, so I believe in the ability of the human body to burst into flames without an outside agent or an inciting accelerant.  They believe a bit of shriveled foreskin is imbued with The Sacred.  Hello?


I don't think I can hide out up here much longer.  There's too much to do and it really stinks of cowardice.

It's a great little perch, the Computer Turret. I can see Fred down there, all red-faced and sweaty, struggling to strap the oversized pet carrier into the front passenger seat.

Oh, my God, there's a Buddy paw clawing its way out, talons extended... Run, Fred, run!

POSTSCRIPT [visual]:

Buddy, back from the vet... and healthy as a horse...

It's gonna be a Rockin' Birthday Eve

After a response time delay that successfully separated my stomach lining from its mother-organ, the assistant to Dr. ShoulderMan called last Tuesday evening with a date for surgery.  It's gonna be a Rockin' Birthday Eve Event on 23 January.

I was able to refrain from asking her to specify the year.

I was, as they say, fit to be tied from the rush to wait.  [I pity the fool who tries to get me into that straitjacket.]

My snark is misdirected, also irrelevant.  Turns out ShoulderMan's assistant, a nurse who is In Charge Of Everything in that particular workshop, had been out of the office the preceding five days.  It was my MDVIP Dr. Go-To-Guy's right hand woman who set me up with expectations... 

I'll let it go, this nonsense, let it float up to heaven tied to the end of a wildlife-smothering mylar balloon with bird-garroting ribbons streaming down, landfill fodder.

[Yeah, that's right, I'm crazed by all the balloon releases that people announce -- as tributes to children dead from evil cancer, usually.  I guess the balloon signifies childhood and the act of watching attached wishes and sentiments rise to the assumptive vault of heaven is cathartic. My vote goes to... I dunno... quilt panels and living memorials of plants and trees.  I'll shut up now.]

I have been brought pretty low of late by things physical, something that is only truly possible by the acquiescence of the mind to things petty.  I've caved in, near implosion, from debilitating sweats, for example, that seem to be accompanied by vicious head and neck aches.  But mostly, it's been the Return of the Spasm that has had me wailing, alone, behind carefully closed doors.

Okay, that's a lie.  I have stopped closing the doors, mostly because every ear in Marlinspike Hall is now entirely immune to the impact of my screams, and never did much react to my cries, anyway, preferring that I announce myself with tasty offerings, via the dinner bell, or with folded clean clothes, after the alarming bark of the dryer timer.

It's not that Fred and La Bonne et Belle Bianca Castafiore don't care;  It's more that no one can sustain the level of pity that I require, especially over an extended period of time.

Thank God for blogging, eh?

Even the Feline Remnant has developed a disturbing catty commentary on my painful inertia.  Dobby has begun leaping onto my blimpy red oozing legs without the least bit of apology, no hint of embarrassment at my yelp of pain.  That glint in his eye had better be a trick of the light.

Personally, I think that with just a tad more dedication and practice, the Indentured Staff, Haddock Middle Management, and Comedic Cling-Ons, all, could whip up sufficient sympathetic fervor -- but that's just me, the hopeless optimist.

The spasms seem to only last about two hours -- that'd be for the one, at most, two, extended sessions of yowling jerkiness per day.  The rest of the time, it's a blitzkrieg sort of experience that clearly derives from techniques of guerrilla and modern urban warfare.  Rapid, apparently disorganized small strikes meant to demoralize as much as disable.  Enmity buried in the ordinary, wide-eyed innocence masking murderous intent.

What?  No, I do not think that the characterization of schtuff (above) is excessively self-important and self-pitying.  What's wrong with you?  Whose blog is it, anyway?

I thought we'd found the formula to defeat CRPS' spasticity, or, at least, the appropriate drug.  It's no surprise -- It's Baclofen.  Also good for hiccups and alcoholism, not necessarily in that order.

Unfortunately, Baclofen can leave me drooling, which begs the important question:  Is life more worth living as a Somnolent Slobberer than as a Total Jerk?  We are trying to ignore the clamor of outside voices, those ninnies who feel no shame in telling me what I ought to do ("Just distract yourself, don't over-medicate!"; "Eat a banana!").  There is always one Ninny who wants to blame a low potassium, who hasn't heard that cantaloupes, prunes, and papaya beat out the banana, or that tomato juice with a baked potato will fill the void, as well.  Be all that as it may, my potassium is fine.

Où est donc le fil de ma pensée? 


Anyway, the Baclofen stopped working, and I cut it back from 80 mg per day to 50-60 mg total, with the result that I no longer spew spittle about The Manor as I twist and twirl and scream.

How is the CRPS, overall?

The Edema Wars continue on, skirmish by skirmish, no real victor in evidence.  I had to spend three days straight in bed to bring down the puffy, liquid nature.of my legs and hands.  It's no longer an extraneous detail, this edema, for when it is uncontrolled, my legs are in the red zone, but with patches both very cold and very hot.  If diuretics, elevation, and rest work their magic and my fingers and ankles reappear?  Then the CRPS slips into deep purples, and every appendage is ice cold.

In terms of pain, CRPS rarely lets up.  The few moments when I am not in pain really are attributable to either unconsciousness or Blessed Distraction.  Unfortunately, pain and sleep are not friendly with one another, so I continue to sleep very little, with the result that pain seems worse, and life, hopeless.  It's wonderful, those occasions when I do get good rest, and simply amazing how much less pain I perceive.  (The lessons of Reality-as-Perception are popular review topics around here.)

Highest on the list of Blessed Distractions?  Books with pace.  The Republican presidential nominees (though we fear their entertainment factor may begin a steep decline as that peculiar segment of the electorate begins to weed, in earnest). Suppression of cat hair in my environment. Cooking and baking.  Crossword puzzles. Counseling the inpatient addicted carnies during their stay in Haddock Rehab (headquartered in the barn).  Short parkour and ballet vids on YouTube.  Bed-bopping and wheelchair-whirling to familiar golden oldies, archaeological rock.  Checking for updates to Pete's Pustulant Pimple over at PopThatZit.  Dobby the Runt, Marmy Fluffy Butt, and Buddy the Freakishly Large Kitten.   Fred.  La Bonne et Belle Bianca Castafiore.  The Crack Whore across the country lane (We sometimes sit and listen to her soliloquize in the middle of the night;  Lately, she has addressed one astonishing speech after another to her Ugg boots.).

There's a new category of CRPS misery -- skin.  Skin that rips and tears, bleeds and blisters, openly weeps and lightly leaks.  Skin that burns, skin that, once broken, refuses to heal.  I suppose my new friend, The Fistula, falls in this category.  The Fistula had stopped leaking and I was full of hope that it would go away, but then I mopped all 27 of The Manor's medieval and early renaissance kitchens last week... and wouldn't you know, the hole in my upper arm turned bright red and produced stringy yellow pus.  The idea that this thing has tunneled all the way from my shoulder prosthesis is so... gross.  *Bleck*!  *Ack*-*Ack*


My right leg is particularly prone to skin weirdness, as well as injury, upon which skin weirdness thrives.  Between cat talon punctures, dropped laptops, and doorway collisions, the leg is pocked with holes and eruptions, and regularly bathed in the terrible brine of lymphatic fluid.  It can be depressing.

Prior to my last visit with MDVIP Dr. Go-To-Guy, I decided to do some heavy maintenance of that leg, and took a brush to it, thinking that maybe the crud and crap could just be scrubbed away.  (Very sleepwalking Lady Macbeth.)  In the shower, perched on the plastic chair [that has a screw poking through its seat right into mine own seat, ouch!], I administered a brief flurry of boar bristles.  Never again.  I still burst into spontaneous fits of bleeding if I leave that leg haphazardly upright, or should I remove the Hello Kitty Band-Aids.  In addition to what can only be described as holes, new pores on steroids, there are shiny, raised, red whorls.

My hands primarily burn, though there are now stabbing pains on the outside of the palm and up the side of the pinky finger, with the foremost complaint-worthy problem being edema and slowness to react, clumsiness.  This puts a real crimp in my legendary culinary knife skills.

We've been keeping Ruby the Honda CRV defrosted, de-iced, juiced up, and just generally ready because the infection in my left shoulder is raging, and there have been a few afternoons when it seemed like I was becoming septic, or, at least, loopy.  I sometimes get hit with chills and sweats simultaneously, cannot get warm, and wrap myself up like a papoose destined for frozen tundra.

So that's the state of things.  My goal is simply to get to January 23 in as great a condition as possible, with a mind prepared for another long haul of seek-and-destroy.  ShoulderMan will team up with another local folk hero, Infectious Disease Dood, and together they'll organize the antibiotic or antifungal (ewww) attack during the post-op period with the spacer in place.  If they are successful, ShoulderMan will be able to regift me with a shoulder (most likely a "reverse" prosthesis) in about three to four months time.

I am so lucky to be in their good hands.

Now... to get there. and with sanity intact!