Ecolalia

simple serendipity

The Emoticon: A Touch of Class...

Is it just me, or does it take a fair amount of insensitivity to leave this comment after a brilliant, heartfelt post announcing the death of a blogger's mother?

Sorry for your loss :(

Voice of Frustration

This is the text of an email from Anthony F. Kirkpatrick MD PhD (via Tony Tobin):

FDA approval of ketamine coma therapy
From: Anthony Kirkpatrick MD, PhD
Sent: 13 October 2009 14:37:54
To:

Today, a physician in Australia wrote the following:

"I hope the FDA sees the light and approves the Ketamine coma therapy in the U.S before too long...good luck and keep up the great work."

My reply:

"In my opinion, the FDA will never approve a disease specific indication for ketamine such as CRPS because there is no patent protection and, therefore, no money to be made by a drug company in going through the FDA approval process for a specific disease state / diagnosis.

There is little financial incentive for the FDA to approve ketamine for a specific pain diagnosis without a drug company supporting the New Drug Application (NDA). More than 60% of FDA's budget comes from drug companies. Check this site out:

http://www.rsdfoundation.org/en/research.html

Thirty years ago, the FDA approved ketamine for a specific route of administration (IV) and dosage range up to and including general anesthesia to treat breakthrough pain regardless of the underlying disease state / diagnosis.

Forget about the FDA ----- it is not the solution. Third party payers (e.g., Australian, US Governments) are likely to reimburse patients for ketamine treatments with the publication control studies like those found here:

http://rsdhealthcare.org/PatientInfo/outpatient_ketamine.htm

It is unlikely that a study with an active placebo control (e.g. midazolam, fentanyl) conducted in the ICU will ever take place from an ethical standpoint given that ketamine has already been proven effective at a low dose for treating CRPS on an outpatient basis. Under this circumstance, how many patients with CRPS would volunteer to be intubated and mechanically ventilated for 5 days in the ICU with an active placebo instead of ketamine?"

A. Kirkpatrick, MD, PhD

www.rsdfoundation.org
www.rsdhealthcare.org

Men!

Truly, I don't want to sound like one of those women who routinely heave sighs before languidly kvetching: "Men!" I don't roll my eyes, either.

In my situation, it's either gonna be frustration with Fred, or frustration with La Bonne et Belle Bianca Castafiore -- so it's even odds that you'll hear "Men!" or "That Castafiore!" -- an exclamation of gender exasperation versus something altogether beyond gender, and very singular.

What's it gonna be today? I feel like snarling, "Guess!" -- but that would be rude. So let's go with:

Men!

Please allow me to trace the progressive locations of what began as a pile of dirty clothes. What day is it? Ah, ever-blessèd Friday.

On Tuesday, I was not feeling well. Believe it or not, my degree of well-being has a fair bit of variance to it! It's okay, with only this blog as a source of information? There's no way you could know!

Anyway, I nonetheless felt compelled to take on a few housekeeping tasks, among them, throwing some of my dirty clothes into the washer. That's not all that difficult an undertaking. Sometimes, though, due to my issues with arms and shoulders, I am not able to lift the weight of the laundry when wet, not able to transfer it to the dryer.

So Fred is accustomed to my requests for assistance and is normally great about doing that for me, as well as getting the dry clothes out and putting the finished laundry on our bed so that I can fold it. (Okay, so sometimes my arms and shoulders, or the lack thereof, prohibit the folding, as well.)

Dear Gentle Readers, allow me a moment of meditation about the bed.

Oh bed! oh bed! delicious bed!
That heaven upon earth to the weary head
--Thomas Hood

Sorry! Some people experience the Call of the Wild. Moi? The Call of the Bed. We frequently swap out headboards and other design elements, here at Marlinspike Hall, deep, deep in the Tête de Hergé (très décédé, d'ailleurs) -- yes, I got the memo from the Archduke, that trickster! Bed changes are especially common during the shift of seasons, when we also break out whatever linens are more appropriate to the new range of temperatures.

The Castafiore actually discovered the bed that Fred and I are currently rolling around in -- we call it a "reproduction" because it's a hodgepodge of styles and inspirations, but the suspicion is that it's an original (original what is the question). The posts fairly scream "British Isles, most likely Welsh! Tra La La!" The headboard proper is Gothic, and by that, I do not reference waxy-black lipstick or dog collars, though it is a look I admire. There's a classic barley twist to the posts -- slender, tapering, meandering, all bendy-like. The panels were made from Flame Mahogany, which all you furniture nuts know better as "crotch-cut": "'Flame' or 'crotch-cut' mahogany is cut at the crotch where a limb protruded from the trunk of the tree, producing a flame-like figuring. It is a cutting technique also used with other fine hardwoods, including walnut, and is extremely expensive, given the small number of major limbs on any trunk. It is a hallmark of quality in furniture construction and is highly-prized for its inherent beauty."

The finials defy description. Yes, I am stumped, rendered mute, by finials, of all things.

In case you are wondering? Why, *yes*, I am having trouble sleeping, even in our fine, fine bed. What was your first clue? Part of it may be that I have been combining all the recent Mother-Unit health emergencies, and their incumbent increase in Stressed Family Contact, with a previously planned drug holiday. Why did I proceed with the drug holiday? I really don't know. Pig-headedness, perhaps. Plus, the whole point is to see what changes when a medicine is withdrawn... and announcing the probability of change spoils the effort.

Yes, Fred has been with me through thick and thin, through neurotic and reasonable. Okay, so let it be established that Fred is a StudMuffin! There, are you happy now? I know I need to do a better job of singing his praises.

If you would kindly stay on message, keep on track? Is that too much to ask of my esteemed readership? Snark and snarl, snarl and snark!

Harrumph.

For some reason, we were having an unacknowledged fight on Tuesday -- a fit of pique rumbling around, inchoate. I cannot even recall the slightest detail of my dissatisfaction but could make a stab at guessing -- the divergence of our schedules, my anger at being waked, his anger at my whining about it. Mother's illness, conflicting feelings là-dessus. The aforementioned drug holiday -- which he might not have known about. Knowing in advance leads to things like extended trips to Sam's Club [still something of a novelty in Tête de Hergé (très décédé, d'ailleurs)] and sudden interest in hour upon hour of American Football.

Given all that indeterminate junk, I chose to leave him a note under his coffee cup -- "Please transfer clothes from washer to dryer. Thank you."

You do remember the laundry, don't you? As in: it all began on Tuesday, with a pile of dirty clothes...

Later, I trained my ear in the direction of the Laundry Suites -- and heard the reassuring rumblemumblerumble of the clothes tumbling in the dryer. As I often do, I promptly forgot about it. I've been absolutely spoiled by Fred's willingness to pitch in and help me finish the tasks I start.

A neverending dispute that vacillates between being of moderate and minor importance? Fred tosses his towels in the dryer everyday after he showers. The towels are not clean, though he argues that they must be, as they have only touched his impeccably clean skin. My issue is that they *smell*. True enough, it is not noticable to anyone but me... but I count, don't I? I really dislike putting anything in the dryer after he's done his towels.

He peppers me with dissent, his favorite question being: "And just what do they smell like, Ms. Smarty-Pants?"

Like Dirty Boy! Like Locker Room Chic! Like Stale Eau de Man!

Anyway, Wednesday afternoon, after his shower, I remembered the load of clothes from the day before, only when I happened to hear some noises of dissatisfaction emanating from the laundry suites. Oops! He wanted to toss in those nasty wet towels but found my clothes still hanging out in the dryer.

I was feeling evasive, so I evaded. After he left for his regular Wednesday night church meeting, I puttputted out there and discovered my clothes piled on top of the washer.

The phone rang. It proved to be yet another Important Call, all about organs and pathology and various failures to communicate and and I forgot about my clothing, yet again.

Yesterday morning, as I cursed my inability to sleep, it occured to me that maybe folding clothes would put me back into a restful mode (due to the repetitive, dull nature of the task), so I headed out, making a ghostly appearance in that famed first century AD Roman mirror of blown glass coated with molten lead, that serves as a sort of night light for the passageway to The Laundry Suites.

Even mundane things take on amplified affect around the Haddock Family holdings! We are faced with such dissonance daily -- the plastic tumbler sweating rings on the Corinthian capitals of the neoclassical mantel in the Renaissance Rec Room comes to mind, or the collection of toothbrushes atop the antique marble Holy Water basin (recycled religious antiquary having well served the earliest plumbers at work in Marlinspike Hall).

Examples, I'm full of 'em. {sniff}

The dryer was empty.

There were no clothes on top of the washer.

The laundry basket, likewise, was but a void.

How mad had he been? I wondered.

Marlinspike Hall is beyond huge. I rode around, peeking in the Carriage Room, the various ballrooms, even checking out Captain Haddock's private wine cellar, accessible only by elevator from the Cigar Room. (Oh, the joys of maintaining those separate ventilation systems! Why he linked up these spaces that each require vastly different humidity levels is beyond me...) No, there were no shirts among the humidors, no pants craddling the pinot noir. No sign of my clothes anywhere. No bras air-drying from chandeliers, no socks strung up on deer antlers.

The sun was up by then, as was my ire, and so I indulged in coffee and a good book for a few hours. I even managed a nap, during which I vaguely heard Fred stumble out of the bedroom, down a few hallways toward the Main Manor Foyer, outside, across the drawbridge, all the way out to the mailbox by Haddock Way.

What? I have excellent hearing... in my sleep.

His treks to the mailbox are famous for their regularity and the fact that he's yet to undertake the journey while awake.

The rest of my day was devoured by endless minutia, more pain than my mind could tolerate, and the search could not resume until today. Fred proved unfazed by my best-to-date efforts at The Silent Treatment.

I had been abed for six hours when he climbed into Our Welsh Four-Poster at 7 am, but none of those hours included any sleep.

"I'm going to hold your hand," he warned. This is a habit developed from familiarity with CRPS. Try and touch me without this advisory and I'm not responsible for the ensuing carnage.

We murmured back and forth, with plenty of soft spaces for listening, and yes, he held my hand.

Our differences patched, we dozed. I didn't sleep long, but I slept well.

I sat in the funkified Breakfast Nook, a loop off of the Medieval Kitchen (and the only place in the Manor dressed up with wallpaper), and could not keep my mind from wandering back to the problem of my missing laundry. Laying next to Fred, I hadn't wanted to sully our sweet reconciliation with demands for tee shirts and undies, and he continued to act as if no details remained to be negotiated.

It was becoming difficult to ignore, my lack of clean clothes!

Still, I decided nothing would tarnish the beautiful beginning to this day. Mother is going home from the hospital this afternoon (we hope); My drug holiday has been tempered with various realities (that is, I allowed myself breakthrough pain medication, which provided a bit of peace to the rest of the household); and I decided it to be worth my while to toss his offensive Man Towels into the wash... Should I ever do laundry, again, that is.

Before anything else, I needed to shower and don my last decent outfit of sweat pants and a former lovers' oversized soft sweater.

I tiptoed my wheelchair into Our Suite and over to our most modern piece of furniture, a cedar-lined, simply-designed wardrobe.

Fred was blowing bubbles in his sleep...

And my clean clothes were neatly folded within. They had that settled look of having been there a good while.

I haven't decided yet whether or not to confess my pettiness. After I fix his favorite meal, laugh at his bad jokes, and plant kisses on my beloved's pate -- I'm sure the right thing to do will come to me.

Men!

photo credit

The Voca People meet Butterscotch and Roxorloops

"The Voca People is a new international vocal theater performance combining vocal sounds and acapella singing with the art of modern beatbox."




And now... the awesomeness of one-person beatbox: *butterscotch* and Roxorloops -->

BOO!

RSDSA Launches Major Study

...on the Natural History and Long-Term Health Effects of CRPS

The Reflex Sympathetic Dystrophy Syndrome Association (RSDSA) launched an Internet-based study entitled Long-Term Health Effects of CRPS: A 20 year Cross-sectional and Longitudinal, Observational Cohort Study, funded by a grant from the Brodsky Family Foundation. The study design is patterned after the registry database conducted by the North American Research Committee on Multiple Sclerosis (NARCOMS) Project, which has 34,000 participants. A previous Internet-based survey studied 1,300 people with CRPS, of whom about 1,000 participated in a follow-up questionnaire. RSDSA hopes that the new study will attract many more participants who will share their experience with CRPS for the benefit of all.

Anyone with the diagnosis of CRPS Types I and II can participate via... the study website. Potential participants, who are not familiar or comfortable with Internet-based communication, can contact the study's Project Manager to obtain paper forms for registration, consent and enrollment. Participation is voluntary and anyone can withdraw from the study whenever they wish. Each year, the participants will be asked to answer questions about their health and health-care utilization, treatment, and how CRPS is affecting their health and wellness. Participants do not need to submit medical records to register for the study, but we may request medical records to confirm information in the database. All questionnaires and records are confidential and securely held according to HIPAA and WIRB* provisions.


This E-alert was made possible by the contribution of the members of the Reflex Sympathetic Dystrophy Syndrome Association (RSDSA). To learn more about becoming a member of RSDSA, please click here.


*Western Institutional Review Board

Lequel des deux "blogsavers"?

Which looks better, the dark or the light version? They're from SaveOurBlogs.



"DARK":







"LIGHT":

Family Ties

The Rorschach test to the left is an MRI showing acute pancreatitis. I thought we'd try something new, graphics-wise!


Good morning, good Sunday morning. I hope to take care of some housekeeping today, both in terms of the schtuff accumulated within the living quarters here in Marlinspike Hall, deep, deep in the Tête de Hergé, as well as here on elle est belle la seine la seine elle est belle.

It's been not so much a somber time lately as nerve-wracked. The Mother-Unit is in the Intensive Care Unit, but -- gladly! -- she is much improved. That's what can happen when doctors actually support their diagnoses with test results -- those wacky medicos!

She lives in a small town. Her late husband, a darling of a man, was a prominent physician there for over 30 years. Last year, she did what people her age tend to do, and fell, breaking her hip. She had a THR that went well, although she came out of it depressed and resistant to things like physical therapy and... effort.

Her family began to hear all her complaints through that filter, as did her doctors. She was Dr. X's wife, a depressive hypochondriacal woman with a few cardiac issues...

About 4 months ago, she began to consistently complain of pain that seemed to be centered in the small of her back, though it also took day trips, popping up as a pain under her ribs, occasionally also hanging out in her side.

The doctors in her town never drew blood, never applied any differential diagnoses, those wacky old white men! (That's a mere statement of fact; I positively adore most wacky old white men.) She was Dr. X's wife, post THR, a depressive hypochondriacal woman...

I do believe they thought she was drug-seeking, as she began coming home from appointments loaded down with prescription muscle relaxants, pain killers, and such. Like any good doctor's widow, post THR, and depressively hypochondriacal, she began playing that well known game of taking one's medication precisely as described and then passing out, which lead to incidents of falling down -- *that* kind of manipulative trickery common to doctor's wives, post-THR and so on and so forth.

She was ordered to resume physical therapy, but the witch just continued to complain and complain about pain, resisting all the allied-health personnel and their demands that she swim, walk, and train for an upcoming mini-marathon. How rude!

Her daughter, my sister, an awesome woman, serves as her dominated caretaker. Truth be told? My Mother-Unit treats my sister like crap, always has, and sadly, always will. For her part, my sister has developed a superbly wicked sense of humor. She is also a very kind person, and she listens, she observes. Much in the way one would hope the physicians would.

She played the role of Worried Adult Child and dragged Mommy Dear back to each doctor, with the result that more physical therapy was prescribed, as well as hints that a chiropractor might prove useful. Prescription pads were waved, more pills purchased, though this go-round, my sister served as drug distributer -- i.e., there were to be no more trips to the hard floor due to overmedication.

They saw the chiropractor. He did whatever it is they do, and suggested... physical therapy.

It was about then that My Helpful Self entered the picture, all foul-mouthed and presumptive.

My main suggestion was to get the heck out of Small Town Dodge, since those doctors still saw her late husband and the obéissance they owed him instead of an elderly woman with a constellation of symptoms -- pain, fatigue, fevers, nausea, and increasing unsteadiness. Of course, she also remained consistently depressed, neurotic, and (a real feat when *actually* ill) hypochondriacal! There are, after all, Family Standards to uphold.

The only Big City referral she was able to get from her Small Town doctors was one to an orthopedist, formerly of That Same Small Town, and a Great Friend of her Dead Husband.

I began to have the proverbial cow, even though this latest physician did take a daring step outside the box and diagnosed her with a kidney infection (again, without testing), and wrote for antibiotics.

That seemed reasonable enough, and we all crossed our arms in satisfaction and stared at The Patient, waiting for the announcement that she felt Better.



[Don't ask me about These Bizarre Capitalizations. I dunno, it's mildly amusing, mebbe? Yes, I *am* easily amused! However did you know?]

Another month went by... and The Patient did indeed change. She complained less, but did not "do" any more in terms of activity, staying mostly in bed. She began to resemble one of those old women who... fade away.

It happens so subtly, so ineluctably.

Then, blessed be, something *happened*, intersecting this long line of mushy non-events with particularity.

She spiked a terrible fever, the pain worstened, and she grabbed the phone to call SuperSis with the complaint that she was cold, damn it! Oh, yeah, it was 3 am.

What an attention seeker, My Mother-Unit!

So SuperSis rushed over there, calling for assistance from her Brother-Unit, and they descended upon the Old Woman.

As an emergency patient, Good Ol' Mom was unknown to the physician on call in Hicksville. So he ordered labs, the crazy guy! It was the middle of the night, he could have cared less who she was, who her Dead Husband was, he only saw her. Hooray! Hooray! Hooray for The Physician On Call! (Now if only we could have arranged for Nurse K to be on duty...)

When the results began to trickle in, the ED doc decided she needed more help than they were able to provide in Podunk Village, and off she went, by ambulance, to The Big City Hospital, where she was promptly admitted to the ICU.

She had a pretty awful case of pancreatitis, also considerable liver dysfunction, a UTI, a messed up gall bladder, and was septic.


It's been three days now, and Super Sis and her Drop-the-Hammer Brother report that the Mother-Unit feels much better, has even walked some, and feels hardly any pain. Of course, appropriately titered pain meds probably account for some of that, also the i.v. antibiotics.

What is that called? Hmm. It escapes me. Wait! I remember! T.R.E.A.T.M.E.N.T.

Surgery is being contemplated, which involves her biggest complaint, at the moment: she wants to eat, but is being kept NPO. We're thrilled that she can think of nothing else about which to kvetch.

So that's her story, in this up-to-the-moment installment.

For me, it calls up My Issues. At least, it did. I no longer give a Royal Hoot. So I end up on the phone with people who swear (on the Bible!) that they used to babysit me when I was but a knee-highed grasshopper... who want to know if I remember them taking me to the beach when I was 3 years old... who ask after my Brother-Units as if they really cared. The swiftest way to cross me is to FAIL one of my Brother-Units.

One swears she is my aunt, another swears to be an uncle. A good many claim to know me and my Brother-Units, intimately, and any protestation of the fact (as in, "but I don't know you from Adam, from Eve!") only engenders an odd puffing of the cheeks and mumblymumbliness.

I become perilously close to asking where they were when Tumbleweed was a child alone, homeless, Lost in Amerika? I risk demanding how they could have allowed Grader Boob to lose faith in everything except The Literary Canon? I almost wonder how they managed to forget about me, too, but almost, as has been noted, does not count.

If I need advice about anything, it is about my Brother-Units and whether or not I should inform them that she's not doing well. Tumbleweed would take it as received information, much as a large democratic congress accepts the findings of its many committees. I cannot know his procedural mind, his memory, his hopes, his regrets. Grader Boob, lui, has admonished me many times, already, in this short life: do not speak of x, of y, of z, do not speak of him, of her. He is so badly hurt, forever injured.

I think I will -- in a short declarative sentence that also reassures each one that his privacy has not been imperiled. Of course, this notification must be done with its own sort of Fire Wall in place, as one of Grader Boob's many prohibitions is that he wants nothing to do with Brother Tumbleweed.

It's enough to drive a sister batty.

Later today, I am going to be a Brave Daughter and actually attempt to speak with the Mother-Unit on the phone.

Maybe. Maybe not. I really don't feel very brave, nor very daughter-ish. All the old feelings of abandonment are bubbling with new life.

The inmates of Marlinspike Hall all wish her well and are proud of my Half-Siblings for such expert handling of an emergency -- and for getting her the hell out of Small Town Dodge. [No offense to small towns.]