Neuro Time

This past week, a bunch of two-faced, aging, good-intentioned white men repeatedly advised me to "rest and heal." These self-same advisors booked me for nine medical appointments. The Fredster and I are exhausted and Ruby the Honda CR-V gently coos and softly honks her need for tender loving care, and maybe a rinse to stave off the sticky pollen.

My body is torn up, the recipient of speed bumps and humps, the jostling of those huge metal plates that cover up an aged and failing infrastructure, the intimate physics of sweetheart curves. The seatbelt alone has become an instrument of torture. At least the freshly operated shoulder is on the left this go-'round

The cost of the various parking garages leaves me with but a pittance in cash. We spent over $35 just for the privilege of stashing Ruby in a Gimp Space. I am going to put a baseball bat in the car, so that I can destroy the many cars being parked in Gimp Spaces by Non-Gimps. Very frustrating.

Of the nine appointments, four were at the Infectious Disease Dude's place. No, of course not, there is nothing I would rather do than be stuck again and again for bloodwork because my PICC line will receive various antibiotic cocktails, but will not release any blood. CrazyLadyNurse had, thankfully, saved several week's worth of gossip about her divorce and her well-endowed new boyfriend. I was delighted to learn that her bedsheets get caught on his amazingly large johnson and that playing "tent" has become a favorite passtime. The Nurse:Pharmacist is a relief, being very normal and polite. She just got back from ten days in Hawaii and it shows -- All of us punked-out sick folk stared at her healthy tan with envy.

Why were we there so often? Because the ID doc was not pleased with the vancomycin trough levels, so there was much dicking around with the dosage. Given that he cannot even justify why we are using vanco again, it is irritating to then get caught up in such minutia.

I finally managed to make and keep an appointment with my neurologist -- I'd last been there in June 2008. His eyes bugged out when I explained the year+ long saga of osteomyelitis and infected prostheses, the two stays in ICU, the vents, the steady worstening of CRPS. He praised my failure to go insane, then pretty much wrote me off as intractable -- with spreading, intractable disease. I wanted to cry, but did not.

And, true to himself, he again muttered his objection that "spreading" is not the appropriate moniker for the phenomenon of CRPS/RSD symptoms, ummm, invading? moving into? branching out? into other areas of the body than the area affected first -- in my case, my right lower leg and left lower arm. Apparently, the concept is hard to explain, because he has never satisfactorily done so -- or, more likely, he does not believe that CRPS/RSD jumps ship from original injury sites to other limbs or internal organs.

{*Whatever*, as the kids say...}

No matter how the phenomenon is fueled, the results are the same as in my other areas of causalgia, so I don't worry about winning a war of words. I mean, look how the new label CRPS has *not* caught on; Even longterm sufferers don't get the distinction between Types 1 and 2 -- forget health care professionals... (I still hear the echo of the nurses in ICU.)

The reality of all the infections of the last year or so has, at least, made our decision about the pain pump or the SCS easy -- there is no way either could be "installed," given my body's lack of fondness for implants. Of all the members of my medical "team," Neuro Man has been the stalwart one in insisting on following through with a procedural approach before writing each off as a waste. The first time we met, he set me up to see a doctor who specialized in treating CRPS/RSD with the whole range of injections, blocks, epidurals, etc. At that point in time, I was insane with pain and confusion. I was reading anything I could get my hands on, talking to anyone who seemed to have a clue.

There quickly came a day when -- after the sixth lumbar block with no effect except spasms and a slight warming of the limbs -- I questioned why we were pursuing a tactic that did not work. I especially questioned why none of these procedures were being followed up with intense PT -- what I understood to be the crux of the matter. That was my last appointment with Dr. ProcedureMan -- later, I read where he was accused of embezzlement and fraud -- along with his brother, an accountant.

Neuro Man cares a lot, and I appreciate that. It's not his fault that there is no wealth of knowledge to inform the treatment of CRPS/RSD. He cares too much. I end up worried about him at the end of every visit -- also, I leave confused, now, as to any sort of future plan. That's my fault, though, explicitly. I hear my voice -- raspy, infected -- as I told him "I don't even want to know what the future holds... because it looks pretty obvious." He gave me a hug -- the kind that doesn't actually touch. An air-hug.

He is hung up on pain -- he completely gets how bad it is, and is always angered that I live with high levels, constantly. He wants me to take scads of meds that, yes, probably would eliminate many symptoms -- but at the expense of consciousness.

Here and here , one finds brief primers on CRPS pain and its lists of usual drug suspects to treat each sort of pain -- from electric and lancinating to localized and sharp to sleep-disruptive to spaz attacks.

The question becomes, as hours pass into days, days to months, to years -- what quality of life remains after throwing all these pills (and more) at the suffering?

I had hoped he had some new trick up his Hawaiian sleeves.

Clinical Trials for CRPS/RSD

I can't sleep -- so in this uninspired state, I thought I would try to keep some promises, such as regularly updating the list of clinical trials relating to CRPS/RSD. Click on the study titles to obtain more information and, if you should participate in one, best of luck!


1 Recruiting: Effect of Delta-9-Tetrahydrocannabinol on the Prevention of Chronic Pain in Patients With Acute CRPS (ETIC-Study) Conditions: Complex Regional Pain Syndromes; CRPS
Intervention: Drug: Delta9-Tetrahydrocannabinol

2 Recruiting: Safety and Efficacy Study of Ethosuximide for the Treatment of Complex Regional Pain Syndrome (CRPS). Condition: Complex Regional Pain Syndrome
Interventions: Drug: Placebo; Drug: Ethosuximide

3 Not yet recruiting: Graded Exposure (GEXP) in Vivo Versus Physiotherapy in Complex Regional Pain Syndrome Type I (CRPS-I) Condition: Complex Regional Pain Syndrome Type I
Interventions: Behavioral: Graded exposure in vivo; Behavioral: Physiotherapy

4 Not yet recruiting: Pain Exposure Physical Therapy (PEPT) Versus CBO in Patients With Complex Regional Pain Syndrome Type I (CRPS-1) Condition: Complex Regional Pain Syndrome, Type I
Interventions: Procedure: PEPT; Procedure: CBO standard

5 Recruiting: Autonomic Dysfunction and Spinal Cord Stimulation in Complex Regional Pain Syndrome Condition: Complex Regional Pain Syndrome
Interventions: Device: Spinal Cord Stimulator; Other: CRPS patients under treatment other than spinal cord stimulator

6 Recruiting: Pregabalin Versus Placebo as an Add on for Complex Regional Pain Syndrome (CPRS) of the Upper Limb Managed by Stellate Ganglion Block (The PREGA Study) Condition: Complex Regional Pain Syndromes
Interventions: Drug: Pregabalin; Other: Placebo

7 Recruiting: Evoked Fields After Median and Ulnar Stimulation Condition: Complex Regional Pain Syndromes
Intervention: Procedure: Evoked fields before and after a local block (Xylocaine)

8 Not yet recruiting: The Effect of Transcranial Direct Current Stimulation (t-DCS) On the P300 Component of Event-Related Potentials in Patients With Chronic Neuropathic Pain Due To CRPS or Diabetic Neuropathy Conditions: Diabetic Neuropathies; Complex Regional Pain Syndrome Type II
Intervention: Device: TDCS/sham procedure on five consecutive days

9 Recruiting: A Study of the Effect of Lenalidamide on Complex Regional Pain Syndrome Type 1 Condition: Complex Regional Pain Syndrome, Type 1
Intervention: Drug: Lenalidamide

10 Recruiting: Double Blind Placebo Controlled Study of Outpatient Intravenous Ketamine for the Treatment of CRPS Condition: Complex Regional Pain Syndrome
Interventions: Drug: Ketamine; Other: IV NSS; Other: Normal Saline

11 Recruiting: Association Between Focal Dystonia and Complex Regional Pain Syndrome Conditions: Focal Dystonia; Peripheral Nervous System Disease
Intervention:

12 Recruiting: Evaluation and Diagnosis of People With Pain and Fatigue Syndromes Conditions: Fatigue; Fibromyalgia; Pain; Complex Regional Pain Syndrome; Reflex Sympathetic Dystrophy
Intervention:

13 Recruiting: The Efficacy of Motor Cortex Stimulation for Pain Control Conditions: Neuropathic Pain; Phantom Limb Pain; Stump Pain; Brachial Plexus Avulsion; Deafferentation Pain; Facial Pain; Complex Regional Pain Syndrome
Intervention: Device: motor cortex stimulation

14 Recruiting: Regional Anesthesia Military Battlefield Pain Outcomes Study Conditions: Anxiety Disorders; Complex Regional Pain Syndrome Type II; Depressive Disorders; Post-Traumatic Stress Disorder; Substance Abuse
Intervention: Procedure: Regional Anesthesia

15 Recruiting: Neurotropin to Treat Chronic Neuropathic Pain Conditions: Causalgia; Reflex Sympathetic Dystrophy
Intervention: Drug: Neurotropin

16 Recruiting: Susceptibility to Chronic Post-Traumatic Extremity Pain Condition: Chronic Pain
Intervention:

T-shirt Fodder

A few minutes ago, I submitted a comment on another blog, and used the expression "...and all I got was this lousy T-shirt."

So, of course, I plugged the phrase into Google and ran across this, which cracked me up. Now I am worried that I have fallen prey to moral putrefaction.

I hate when that happens.

My grandparents went to Auschwitz and all I got was this lousy T-shirt

Catharsis, continued

I thought that hospitalists were internal medicine doctors, widely and deeply trained to deal with most every medical issue under the fluorescent lights of the hospital sky...

But I ended up being cared for by four hospitalists -- two were internal medicine doctors, one was an "intensivist," and the fourth specialized in "pulmonology." In addition, there was a cardiologist, a neurologist, my superb orthopedic surgeon's wondrous PA (Dr. ShoulderMan himself flew off to South America right after surgery), the pain management service (excellent folks), and the ID guru.

So explain to me how I ended up having to call my MDVIP (pseudo-concierge) go-to-guy from the ICU in order to get the folks listed above to actually *do* something that made sense?

Explain how my sore throat, which pre-dated the admission, was ignored -- how a simple order like lidocaine spray had to be made and remade three times, and the spray never arrived? Sounds like nothing, but it turns out it was a major deal. The ID's PA immediately added a Z-pack to the i.v. vancomycin yesterday -- and hooray, my fears of not-breathing are mostly allayed. I have to say that the PAs involved in my care hit homeruns -- they listened, they heard. She was the first to *hear* when it started, that it was not related to the intubation, that it was getting worse -- and to discover that the pre-op chest film already showed lower lobe pneumonia.

Ah hell. I need to get this stuff off my congested chest.

Interesting how medicos introduce themselves to patients, how they address the lazy bastards lolling around in those oh-so-comfy beds... A Bette-Midler look-alike was one of the internal medicine hospitalists. We first met while I was on the ventilator -- strangely lucid and trying to answer everyone's questions with paper and pencil. She had a lovely habit of not letting me finish writing -- trying to guess the next word, even grabbing the clipboard out of my hands and holding it up like we were doing a first grade show-and-tell. There was a complicated issue involving the interpretation of my echocardiogram, done a week prior to admission -- it had been misread (as a normal trileaflet aortic valve when, in actuality, it was a congenital bicuspid valve that was quite thickened and leaking, etc) and explaining this while intubated and hurting beaucoup was hard -- Bette Midler kept butting in. It took the cardiologist to save the day, as he muttered, "Let's just get another one..."

Bette never introduced herself. At all. The nurses, complete with eye rolls, did that for her. Two days later, back up on the ortho floor, she came charging into the room, threw back the covers, and began an unprecedented exam of my abdomen -- always top priority after shoulder surgeries. She looked vaguely familiar but I had trouble placing her -- she scared me to death. I kept saying "Who are you?" and she kept up her dedicated search of my belly. She was panicked, apparently, by the fact that my blood sugar had dropped into the 40s subsequent to an insulin injection. I was asymptomatic, drank some juice, and was given an i.v. dose of dextrose -- the blood sugar was up to 105.

She continued to ignore me, and began yelling at the nurse. I finally pretty much screamed, "Who are you?" The nurse placated her... I explained, upon her eventual introduction, that I was not "technically" diabetic, but that my blood sugar went up when infection reigned (as then) and when receiving stress-dose steroids (as I was then). I objected to the insulin, asking instead that she restart my oral meds, and allow me to finesse my hospital diet (have you ever looked at an ADA clear liquid diet??? It was all sugar!). She went ballistic and I began to regard her as an excellent cartoon.

I refused all insulin from that point on -- I mean, gee, an hour or so after getting the last injection, I had tanked -- duh! I had another medico reorder my normal meds, and never (well, only once) had another abnormal reading afterward.

Did she address the issue of me not breathing? The exacerbation-unto-hellishness of CRPS/RSD? The Fredster is convinced that CRPS/RSD is behind every symptom that presents... Did she take the time to go over the meds that actually were messed up? Do common sensical things like order the foley removed or discontinue the oxygen -- anything to expedite me getting the hell out of there and home. No, her last visit, announced by a tumbleweed whirlwind, consisted of her standing at the foot of the bed, both hands on my exposed, swollen, purple, ice cold, 10/10 pain-leveled ankles, saying something about the god-damned blood sugars and her objection to my use of oral meds.

She started a pain cycle that hasn't stopped yet. I was speechless from the pain, then in tears. I get that she thinks Amaryl will cause another "hypoglycemic" episode -- though pointing out the conspicuous role of insulin was futile.

She then gave me the results of several tests I did not have (MRIs -- impossible due to my bionic nature, and a TEE). I was also released with someone else's paperwork.

The other internal medicine hospitalist decided to go with the theory that the three episodes of respiratory arrest were due to seizure activity. He couldn't be budged from this opinion, despite the neurologist's own eye-rolling. I still have the damned goo in my hair from the EEG. I *have* a seizure disorder -- myoclonic -- but it is extremely well controlled and it's been years since it reared its ugly head -- I did not lose consciousness, or twitch, or nuttin' -- during the first two "episodes."

The pulmonologist was interested only in my lungs -- fair enough -- though he missed the preexisting pneumonia and decided to ignore the low O2 readings (and related alarm beeping beeping beeping beeping) during the last 24 hours there. He repeatedly asked me if I was sure I wasn't on oxygen at home. I repeatedly said something like "Hmmm, let me think. Ummm, no!" Still, he did his job, stayed within the lines of his "scope."

The intensivist? Crass as hell, rude, probably never heard a word I said -- and was the best of The Hospital-Acquired White-Coated Creatures. He made soliloquies, overweight, shakespearian as all get out. The one that allowed me to somewhat trust him? "You are in the worst possible place for your CRPS. There is nothing but stimulation down here..."

Geez. So many cooks, none really giving a damn about quality control (and very bad about passing on information one to another, failing to order schtuff because of the assumption that this was someone else's domain), never taking a history, even.

I woke in the wee hours of Tuesday morning, reached for a pen to write Fred a note, and was unable to grip it. I've had radial nerve palsy in that hand before -- but now it was the whole hand that wouldn't work. I found this alarming. Not one nurse, not one doctor took it seriously. I know that time is the cure -- but given everything that had gone on, I needed to hear that. My left arm was twice normal size following the surgery, so it mattered -- being handless. With a week's time, it has greatly improved, and now has an ulnar nerve distribution. As it happens, I see my neurologist on Friday, so at least it will get evaluated. What should a hospitalist do in this case?

I get the distinct impression that no one gives a royal shit if someone who was already pretty ill and disabled suffers worse illness and new disability -- I am a throw-away. Surely I am accustomed to things being bad, getting worse.

We would have been so much better served by remaining under the care of the orthopedic surgeon -- someone needed to orchestrate... even if the musical score sucks.

Whew. That's better. It wasn't my intent to relate so many pointless details -- but I was shocked.

The other shock was at the level of basic patient care. My sheets were never changed, except for a new top sheet whenever I managed to pour coffee everywhere. Smile. Fred gave me my one bath. The ICU nurse answered my request to "wash up" with: "Oh, they love to do that kind of thing on the floor. Let's wait..."

Thanks for listening -- whether you actually have or not. If not for the GD Sentinel Event back in 2002, would any of this be traumatic? I am trying to turn off the memory banks, trying to not fear you people... And the good definitely outnumber the bad. I think with great comfort and confidence of the respiratory therapists who saved the day, nurse Gwen who saved my life and gave all the glory to God (amazing, the number of nurses who want to PRAY with the patients! Oy!), Dana who kept me company during the last two beeping beeping nights, and who did some great nursing by violating orders and inventing a few protocols... And I am enormously thankful for the intensivist hospitalist and his direct approach, and for getting me breathing again.

Great food service, friendly housekeeping, stupid pain scores!

Four Dead in Ohio

O Lord, Hear My Prayer

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

Just plain exhaustion and an increasingly pervasive depression.

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

Tuesday, The Boutiqueur and the infectious disease infusion center.

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

Thursday -- sleep.

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

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

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

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

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

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

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

Back away, back away from the volatile.

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

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

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

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

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

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

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

"But I BARELY touched you!"

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

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

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

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

I've got to stop.

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

It goes back to May 22, 2002.

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

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

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

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

I am so grateful for this space.

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

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

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

Ah, but I may as well try and catch the wind...

I so admire this cat! So zen! So the impermanence of the world! (So Donovan!)

Be/Loved

Hello, Dedicated Reader Base!

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

Anyway, the short version:

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

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

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

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

Undifferentiated Mush

I haven't slept in 44 hours. Oddly enough, I find myself fighting the urge to sleep. This tends to happen when I'm stressed -- but really, if this is stress, then I am one lucky person. The surgery on Monday, and the tedium of being in the hospital, probably in isolation again, is exacting its toll -- in advance.

How do I know I will be stuck on the other side of people floating in yellow paper gowns with shockingly bright blue latex-free gloves? Because I have assurances it won't happen from my internist and his Supernurse Sidekick, from the admitting orthopedic surgeon, his PA, *and* his nurse, from the Infectious Disease doctor and *two* of his PAs, as well as from the Director of the Infusion Center.

Each person is quite sincere and well-meaning -- and all of them make reference to "common sense." And yet, not one of them is willing to do the leg work of ordering cultures, then checking on the results, and writing orders implementing or discontinuing the innumerable ickitudes of isolation. I know this because of the previous four admissions during which we danced this same dance.

La Bonne et Belle Bianca Castafiore refuses the paper and plastic garb. She either sneaks in without them to begin with, or dons them with great fanfare out in the hall, only to rip them off like a cheap costume once inside the room. Ah, ah, ah! Je ris! Oui, je ris! Simplement de me voir, si si si, si belle dans ce sacré miroir, ah-ah-ahhhh! I know, I know! Out of the bonny blue she has begun to produce operatic riffs...

Anyway, I have plugged my nares with antibiotics, washed every inch of my body with Hibiclens, lanced the multitude of dark, oozing, stinking boils... just kidding about that last part. "Multitude" is kind of an overstatement, used for shock value.

So this afternoon, as the preregistration nurse is doing her thing an d swabbing the nares and the axillary hot spots, I will be smiling my secret smile, secure in the knowledge that Science is going to fail me, once again.

I bet you a dollar. The results will be negative, no growth -- but because hospital protocol requires two successive negative results, that is where the ball will get dropped. I can orchestrate the production before surgery -- but after? That's a different ball of sealing wax.

It is within the realm of the possible that you've no idea what I am babbling about. Don't worry, for you are not alone in falling short of perfection. I have a clusterfuck of medical issues -- lupus, avascular necrosis (which engendered three joint replacements and several pinnings, plates, and screws of fractured bones), adrenal (and renal!) insufficiency, and the everlovin' CRPS/RSD. Oh yeah, and a fair amount of aortic regurgitation.

Also an aortic aneurism.
And a partridge in a pear tree.

The short version of the pertinent? Somewhere along the line, pathogens moved into both of shoulder prostheses -- and then developed into a more classic osteomyelitis. Last August/September, my awesome orthopedic surgeon removed my right shoulder prosthesis due to massive infection and "replaced" it with a silly little antibiotic-impregnated spacer. This surgery did not go very well, and resulted in schtuff like ventilators, pressors, ICU, and an extra visit to the surgical theatre. Despite having lots of evidence for the lab to work with, nothing grew in the cultures. In December, he had to remove the left shoulder prosthesis, and gifted me with another spacer. The infection spread into the entire shaft of the humerus, which -- in ShoulderMan's words -- "pretty much exploded." Mid-February, he went back in on the right side, and put in another total shoulder prosthesis. We are hoping to repeat that achievement this coming Monday on the left side.

I know that my navel is not the center of the universe. Trust me, I am as disgusted as you by this constant worrying and teasing of details over which I have no control -- and about which you have little interest.



How did I miss that the Taliban are within spitting distance of Islamabad? Was it because of that navel thing, or maybe fever, pain? No. I was, quite simply, derelict in my duty as a Planetary Citizen.*

ISLAMABAD, Pakistan — Pushing deeper into Pakistan, Taliban
militants have established effective control of a strategically important district just 70 miles from the capital, Islamabad, officials and residents said Wednesday.

The Taliban pushed into Pakistan from the Swat Valley. We are assured that Islamabad is not in imminent danger, and yet:

Buner, home to about one million people, is a gateway to a major Pakistani city, Mardan, the second largest in North-West Frontier Province, after
Peshawar.

“They take over Buner, then they roll into Mardan and that’s the end of
the game,” a senior law enforcement official in North-West Frontier Province
said. He asked that his name be withheld because was not authorized to speak to
the news media.

My God. I think it is time to focus on what matters.

*"The beliefs I have to defend are so soft and complicated, actually, and, when vivisected, turn into bowls of undifferentiated mush. I am a pacifist, I am an anarchist, I am a planetary citizen, and so on." Kurt Vonnegut

Deninel: A Stream in New Hampshire

I can usually riddle my way through misspellings.

But I am tired of a certain woman's insistence that her husband is in a state of: deninel.

The first time she typed it out, I smiled indulgently (my most obnoxious smile, unfortunately). By the third repetition, I was mouthing deeeee-nigh-yul,deeeee-nigh-yul,deeeee-nigh-yul.

There ain't no damn word DENINEL.

dee-nin-ul? dee-nin-ul?

Do not mess with Retired Educator when she has not slept a wink, nor a nod, and she ain't a' blinkin' none, neither.

Bless this lady's heart. She goes on to write:

"My husband has cirrhosis of the liver and hep c, he is also bypolar! He refuses to take meds and is in complete deninel!!! The stress is about to kill me , my faith is strong but he wears me down!!! We have two children at home 17, and 15 , I have went to work to help support us."

Before I lapse into a pool of melted Jello (somehow I picture a very red mix of cherry, watermelon/kiwi, and raspberry, all pulsating at roughly 120 beats a minute) out of sympathy for her situation, my God, why can't people manage to make verbs agree with subjects? Is it hard? No, it is not.

Sorry, I meant: No, it are not.

She can spell CIRRHOSIS but not bipolar?

Her screenname involves use of one of my favorite words: poot. As in: I pooted, you pooted, he/she/it pooted, we pooted, you pooted (again), and they pooted. This is a Free Poot Nation.

And, of course, in addition to being slang for flatulence, "poot" has a history of diplomatic implementation, because the Venerable Bush preferred "Pootie-Poot" as sobriquet for Putin, the former {*cough*} President of Russia. You know, the guy who is now {looooong *fart*} Prime Minister of Russia? Second-in-command {baritone *belch*}?

Oh, the hilarity, back in February of 2001, when we could afford to yuck-it-up but good:

INSIDERS are admitting that President George W. Bush's penchant for bestowing his own nicknames on close associates has provoked the first crisis of his new administration.

"Internal communications are in turmoil," confesses a high-ranking Bush aide known as Frenchy, though he doesn't know why. "The president says get me Knuckles on the line, or where's The Eskimo, or let Bones and uptown handle this," he laments, "and nobody has a clue as to who he's talking about."

Vice President Dick Cheney, a seasoned Bush handler, refuses to confirm or deny reports that he plans an internal White House telephone hot line where senior advisors, cabinet members and others can call in to find out their current presidential nicknames and those of their colleagues.

But knowing who's actually who among themselves has become a high-stakes guessing game for the Bush team members — as was underscored by a recent trip to Kansas City by a bewildered secretary of state, Gen. Colin L. Powell.

The president had ordered that Bullets be sent to represent the administration at a town meeting on farm subsidies. Assuming Bullets to be Mr. Bush's informal name for the only ex-military figure among his top aides, a member of the White House staff conveyed the word to General Powell. He was halfway to Kansas City aboard Air Force One before the goof was revealed: Bullets is the president's nickname for the secretary of agriculture, Ann M. Veneman. Mr. Bush's response to the snafu was quoted as, "Why for heck's sake would I send Balloonfoot to do Bullet's job?"

The first lady herself is reported to be "baffled" by her husband's nickname for her. "I hung up five times yesterday when he called to ask what was for dinner," said a flustered Laura Bush. "I thought it was a wrong number when the guy kept asking for Stretch."

Meanwhile, President Vladimir V. Putin of Russia is reportedly both baffled and incensed that on his first call to the new American president, Mr. Bush addressed him not as Mr. President or Mr. Putin but Ostrich Legs.

Mr. Cheney, who is said to believe his own Bush nickname to be either Hopalong or Crash-Dive (signed presidential memos evidently differ), has reportedly come to dread full cabinet meetings. "When George W. starts with the `Good morning, Skeezix' and `Let's ask The Undertaker," says one cabinet member, who thinks he himself may be Spinach Man, "they all look over at Dick for help, and he's as lost as they are. And if Dick doesn't know who the president's talking to, who does?"

A White House nickname hot line, should Mr. Cheney set one up, would be helpful but no panacea. High- ranking administration officials are still likely to refuse the call when their secretaries announce it's The Pecos Kid for Snooky. Foreign leaders beyond nickname-hot- line range will surely bridle at being called Nine Pin or Hound Dog by a fellow head of state.

And what of Mr. Bush's intimate circle? One old friend returned as Not Known At This Address a 50- pound shipment of Texas barbecue beef bearing the presidential seal, addressed to "The Big Goober." His name is Darryl.

Compounding the confusion is Mr. Bush's creativity with sobriquets, verging on free association.

"His nickname style isn't anything you can decode," points out a close observer known only as Four- Eyes. "Like, say, calling tall guys Shorty and right- handers Lefty. Why is Attorney General John Ashcroft Snake Hips — or is that Rumsfeld? No, he's Pistol Pete. Wait a minute, maybe Rumsfeld is Chickenman and Pistol Pete is Christie Whitman. Aw, I give up."

Asked by reporters about the impending nickname hot-line project, the president himself expressed surprise at the idea and said he had no information he was aware of.

"For that," he replied, "You'd have to talk to Stilts."

I have been up all night, which explains the incredible profundity of this post, but somewhere in the steel trap that is my mind, an analogy, nay! A causal relationship was forming. Okay so some of it was forced. A lot forced.

NanaPoot (yes, that is this distressed woman's *chosen* moniker)? Meet the man secure enough in his... um, masculinity to come up with "Pootie-Poot," and the Author of Much of My Discontent, and perhaps the Author of Some of Yours. I sincerely hope that you will be able to access some meaningful help for your husband and your entire family.

Long-lasting nerve block:::Slow-release technology

This research may well improve the usefulness of nerve blocks, which are often used in the management of CRPS/RSD pain. I'm unclear as to whether this translates into the preferred sympathetic block. (Of course, I maintain that the continued emphasis on SMP, or Sympathetically Maintained Pain, is a colossal waste of time and resources unless the treatment response is in the very early months of CRPS. I am pretty sure that I progressed to SIP, or Sympathetically Independant Pain, within the first six months or so of onset.)

Of course, there is the ever distinct possibility that I don't know my ass from a hole in the ground

Long-lasting Nerve Block Could Revolutionize Pain Management

ScienceDaily (Apr. 16, 2009) — Researchers at Children's Hospital Boston have developed a slow-release anesthetic drug-delivery system that could potentially revolutionize treatment of pain during and after surgery, and may also have a large impact on chronic pain management.

In NIH-funded work, they used specially designed fat-based particles called liposomes to package saxitoxin, a potent anesthetic, and produced long-lasting local anesthesia in rats without apparent toxicity to nerve or muscle cells.

"The idea was to have a single injection that could produce a nerve block lasting days, weeks, maybe even months," explains Daniel Kohane, MD, PhD, of the Division of Critical Care Medicine in the Department of Anesthesiology at Children's, and the report's senior author. "It would be useful for conditions like chronic pain where, rather than use narcotics, which are systemic and pose a risk of addiction, you could just put that piece of the body to sleep, so to speak."

Previous attempts to develop slow-release anesthetics have not been successful due to the tendency for conventional anesthetics to cause toxicity to surrounding tissue. Indeed, drug packaging materials have themselves been shown to cause tissue damage. Now, Kohane and colleagues report that if saxitoxin is packaged within liposomes, it is able to block nerve transmission of pain without causing significant nerve or muscle damage.

In lab experiments, the researchers evaluated various formulations--various types of liposomes containing saxitoxin with or without dexamethasone, a potent steroid known to augment the action of encapsulated anesthetics. The best liposomes produced nerve blocks lasting two days if they contained saxitoxin alone and seven days if combined with dexamethasone.

Cell culture experiments and tissue analysis confirmed that the formulations were not toxic to muscle or nerve cells. Furthermore, when the team examined expression of four genes known to be associated with nerve injury, they found no up-regulation.

"If these long-acting, low-toxicity formulations of local anesthetics are shown to be effective in humans, they could have a major impact on the treatment of acute and chronic pain," says Alison Cole, PhD, of the NIH's National Institute of General Medical Sciences, which partially funded the work. "This slow-release technology may also have broader applications in drug delivery for the treatment of a variety of diseases."

Kohane is currently optimizing the formulation to make it last even longer, while avoiding local and systemic toxicity. "It is conceivable we could have a formulation that is suitable for clinical trials before too long," he says.

The research is published online on April 13 by the Proceedings of the National Academy of Sciences. The study was supported by the National Institute of General Medical Sciences. Hila Epstein-Barash, PhD, was first author on the paper.


--------------------------------------------------------------------------------

Journal reference:

Hila Epstein-Barash, Iris Shichor, Albert H. Kwon, Sherwood Hall, Michael W. Lawlor, Robert Langer, and Daniel S. Kohane. Prolonged duration local anesthesia with minimal toxicity. Proceedings of the National Academy of Sciences, 2009; DOI: 10.1073/pnas.0900598106

You and Your Breasts

Yoo hoo! Over here, over here!

You probably know this already. I didn't.

I was cruising around over at YouTube, watching very sober, intellectual-type videos that all involved, for some inexplicable reason, seriously cute kittens (my preferred sort of Talking Head: The Feline Pundit).

Then it happened. It happens a few times a day. For someone like me? That means daily surprise...

Directed-at-me advertising (also known as: targeted, customer-directed marketing).

I hate it. Rather than broadening my horizons, these ads do nothing but remind me of restrictions, limitations, foreshortening -- "the effect of perspective causes distortion." Do I want to be reminded that my browsing choices reflect an intense interest in things like low carb snack foods, veterinary anesthetics, neurological disease, Indonesian wedding cake decorating, kitty litter (and other human-oriented bowel regimens)?

In addition to holding the key to my personal financial future, Google just plain impresses me, which is, of course, why it remains my favorite bit of equity.

Anyway, I saw a link that I'd never noticed before that took me gently by the puffy hand and led me to: YouTube Interest-based Advertising and You.

This reminds me of one of The Fredster's favorite Early Job stories. He was working as an engineer for a smarmy doctor, T.R. Shantha, M.D., who owned a collection of rental properties and motels. (This guy was -- rather belatedly -- convicted of medical fraud just two years ago. He did things like infuse patients with hydrogen peroxide. His clinic laid claim to "safe and effective, nontoxic, scientifically-based alternative” medicine that could “cure or control most cancer and other chronic disease.") Shantha was incredibly money-hungry*. He authored several erudite monographs, of which Fred retains one exceedingly rare copy that we hope to be able to cash in for a small fortune some future rainy day: You and Your Breasts.

Until that time, it will remain one of our most consulted works of reference.

(Choo! Choo? Have you seen my train of thought?)

Back to YouTube. The next click led me to Google Ads Preferences which, in turn, led me through the steps necessary to opt out of interest-based advertising!

Then, loving my readership as I do, I rushed "here" to tell youse guys about it in my usual, straight-up, clear-as-crystal way.

If you are bugged by ads purporting to represent your burning interests, this is one way to blend back into the tepid sea of anonymity.

*Umm, Fred quit when approached to burn out a family behind in their rent. Not in the job description. (Not to worry, My Guy did the right thing...)

The S-Word

First, I hope it is as beautiful a day where you are as it is here. The eyes rest on flowering trees -- the colors! The sky draws them up to a crystalline blue that goes on forever.

Okay. Snap out of it.

{x-sneeze}

Second, this proposal of the Obama administration strikes me as stupendous -- and in more ways than are initially apparent. [I woke up *deep* -- a reg'lar Think Tank. Actually, I woke up to a barrage of the nimble-tongued Captain Haddock's verbiage. More on our, um, conversation in the minute or so it takes you to read this article.]

U.S. May Convert Banks’ Bailouts to Equity Share

Published: April 19,2009
WASHINGTON — President Obama’s top economic advisers have determined that they can shore up the nation’s banking system without having to ask Congress for more money any time soon, according to administration officials.

In a significant shift, White House and Treasury Department officials now say they can stretch what is left of the $700 billion financial bailout fund further than they had expected a few months ago, simply by converting the government’s existing loans to the nation’s 19 biggest banks into common stock.

Converting those loans to common shares would turn the federal aid into available capital for a bank — and give the government a large ownership stake in return.

While the option appears to be a quick and easy way to avoid a confrontation with Congressional leaders wary of putting more money into the banks, some critics would consider it a back door to nationalization, since the government could become the largest shareholder in several banks.

The Treasury has already negotiated this kind of conversion with Citigroup and has
said it would consider doing the same with other banks, as needed. But now the
administration seems convinced that this maneuver can be used to make up for any
shortfall in capital that the big banks confront in the near term.

Each conversion of this type would force the administration to decide how to handle
its considerable voting rights on a bank’s board.

Taxpayers would also be taking on more risk, because there is no way to know what the common shares might be worth when it comes time for the government to sell them.

Treasury officials estimate that they will have about $135 billion left after they follow through on all the loans that have already been announced. But the nation’s banks are believed to need far more than that to maintain enough capital to absorb all their losses from soured mortgages and other loan defaults.

In his budget proposal for next year, Mr. Obama included $250 billion in additional spending to prop up the financial system. Because of the way the government accounts for such spending, the budget actually indicated that Mr. Obama might ask Congress for as much as $750 billion.

The most immediate expense will come in the next several weeks, when federal bank
regulators complete “stress tests” on the nation’s 19 biggest banks. The tests
are expected to show that at least several major institutions, probably
including Bank of America, need to increase their capital cushions by billions
of dollars each.

The change to common stock would not require the government to contribute any additional cash, but it could increase the capital of big banks by more than $100 billion.

The White House chief of staff, Rahm Emanuel, alluded to the strategy on Sunday in an interview on the ABC program “This Week.” Mr. Emanuel asserted that the government had enough money to shore up the 19 banks without asking for more.

“We believe we have those resources available in the government as the final backstop to make sure that the 19 are financially viable and effective,” Mr. Emanuel said. “If they need capital, we have that capacity.”

If that calculation is correct,Mr. Obama would gain important political maneuvering room because Democratic leaders in Congress have warned that they cannot possibly muster enough votes any time soon in support of spending more money to bail out some of the same financial institutions whose aggressive lending precipitated the financial crisis.

The administration said in January that it would alter its arrangement with Citigroup by converting up to $25 billion of preferred stock, which is like a loan, to common stock, which represents equity.

After the conversion, the Treasury would end up with about 36 percent of Citigroup’s
common shares, which come with full voting rights. That would make the
government Citigroup’s biggest shareholder, effectively nudging the government
one step closer to nationalizing a major bank.

Nationalization, or even just the hint of nationalization, is a politically explosive step that White House and Treasury officials have fought hard to avoid [....]

Where did I leave my helmet? The vociferous bloggers who enjoy scaring themselves and others with the big, bad S-word (Saltimbanco, sidereal, soprano, stellar, sorrow, sideshow, setters, Suzie Q? -- Oh, a psychiatrist would have a field day with such a list!) -- Okay, so strictly speaking, Edmund L. Andrews, the author and unacknowledged second cousin to Julie Andrews, she of potty-mouth fame, prefers the N-word -- which is just silly.

Yeah {cough} -- the vociferous bloggers in double knit polyester pants and stiff yellow polo shirts, through which one can determine the inny-or-outy situation of the navel, hissing away like the nasty snakes that they are! Whoa, Nelly, Retired Educator -- Settle down, there, Champ!

Puh-leeze. Vociferous double-knitted bloggers don't scare me. I just got off the phone with none other than Our Benefactor, in whose Ancestral Manor we are living, and whose generosity we enjoy. I mean it; We really enjoy it.

I was still half-asleep but hearing The Captain's voice booming in my ear brought me to wakefulness in an instant. Believe it or not, he's still hanging out in Africa with the good and faithful Bongi -- apparently, they enjoy regaling one another with Tales of Glory Days. Not that their present endeavors aren't Story Worthy, mind you.

Why am I speaking of The Captain, why of Bongi? It is a question of curses, creativity, catharsis, and, probably, but unconfirmed, the odd crumpet. Well, okay, *strictly* speaking -- something I endeavor to no longer do, in my felicitous retirement -- Bongi's concern is less The Art of Cursing and more the management of the surgical theatre, and saving lives.

Which is not to say that The Captain hasn't saved his share of lives.

You wanna talk Pirates? The mere mention of Captain Haddock makes their blood run cold. No need to have Navy SEALS pop 'em in the head -- no, they abandon ship as well as booty when they hear the Captain approach. One is more likely to hear him first, see him second. (I love the word "booty": A nautical term for treasure; American slang for buttocks...)

So anyway, half-asleep, I put the phone to my lovely cauliflowered left ear (too many years of MMA) to hear: Army of bachi bozouks, why are you still abed?

Oh, Captain, My Captain, is that you? mumbled lazy-ass me.

In the name of billions of blind whales -- who else would call on the Emergency Red Phone in the Visitor's Wing of Marlinspike Hall? Sub-products of ectoplasm, who's been using my minutes? Hairy cucumbers! Stinking goat-bearded dolphins!

He was on a roll.

Toward the end of our rollicking conversation, he inquired as to my reaction to Obama's performance, these first hundred or so days.

"Courageous and Bold," I proffered.

"Christ of a Commie Bleating Bolshevik," he countered, in a scary **whisper**.

"Whatever floats your boat, Captain," I hissed.

"Ship. Ship. Whatever floats my God-damned SHIP!"

Note the day and time. Even Captain Haddock becomes crass when discussing politics.

I think shifting ownership from common cash to shares is... very American, smart, and -- what I like most -- it drastically decreases the opportunity for graft chez some of these smarmy corporations.

I am going back to bed. Clouds are moving in. We may have to find a new place to live.

Go GOOG.

Aaden Gosselin

When I grow up, I want to marry Aaden Gosselin.

Cry Me A River ::: Susan Boyle

Wow. At first, I didn't recognize her voice but about a third of a way in... Yes, that is her.

It is still very difficult to believe that this is an untrained voice -- but the more biographical articles continue to insist upon it.

The frumpiness, I believe, and hope that they will leave Ms. Boyle to her own frumpitudinal devices. If she wants to make herself over, cool. Pluck that brow! Style that hair! If she doesn't, I believe the world has learned the heavy-handed Book/Cover lesson. Oh, who am I kidding? We've learned the lesson only as it applies to *her*.

There were only 1000 copies made of the 1999 charity album -- funded in part by the Whitburn Community Council in West Lothian, where there must be something in the water.... I'd pay top dollar to hear The Broxburn Public Band cover Bohemian Rhapsody.

Doesn't every copy have a master? Let's start pressing those babies!

I know so little about music, only what the Brother-Units taught me, and what Fred has spent years refining (He is a Recovering Audiophile), and yet, like anyone, I know what I like. I like this version of Cry Me A River, and am astonished by things like her phrasing and -- perhaps most astonishingly? Her *restraint* -- the lack of which ruins a good many bluesy ballad.

Those who can, sing. Those who can't? The blither and blather on about phrasing and restraint.

In summation: Wow.