Autoimmunity and CRPS

The passive transfer of immunoglobulin G serum antibodies from patients with longstanding Complex Regional Pain Syndrome

Andreas Goebel, Mar Liete, Li Yang, Robert Deacon, Cruz M. Cendan, Andrew Fox-Lewis, Angela Vincent

European Journal of Pain
Volume 15, Issue 5, Pages 504.e1-504.e6

May 2011

ABSTRACT

Background
The aetiology of Complex Regional Pain Syndrome (CRPS) is unknown. Recent evidence suggests that there may be autoantibodies directed against peripheral nerves, but it is unclear whether such autoantibodies are merely biomarkers or whether they cause or contribute to the underlying pathology. The transfer of disease after injection of a patient’s serum or IgG fraction into mice (‘passive transfer’) is the classic way to demonstrate a functional role of autoantibodies.

Aims
Based on previous preliminary results, we wished to investigate whether the transfer of IgG antibodies affected mouse behaviour or produced signs of CRPS.

Methods
We injected purified serum-IgG from 12 patients and 12 controls into groups of 6–10 mice (∼17mg/mouse intraperitoneally) on 2 consecutive days and looked for any evidence for altered behaviour or signs of CRPS. The observer, blinded as to test or control group, measured behaviour in the open field, stimulus-evoked pain and motor coordination, and inspected limbs for autonomic CRPS signs.

Results
Stimulus-evoked pain and autonomic signs were not detected, but CRPS-IgG induced significant depression of rearing behaviour (17.9 rears/3min (n=84) vs. 22.1 rears/3min (n=83), p=0.0004), confirming previous observations in a single case study. Moreover, motor impairment, one of the four cardinal signs of CRPS, was evident in the three CRPS-IgG injected groups tested with a sensitive rota-rod protocol (p<0.0001 vs. control-IgG injected groups).

Conclusions
These results lend support to a pathophysiological role for IgG autoantibodies in CRPS.

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A Good Day For Kate ♥

Psssst!  Kate had good scan results today!  See the journal entry over at CaringBridge...

*kate*
Thanks to CaringBridge and the Tiny Sparrow Foundation *

* The Tiny Sparrow Foundation:  "a non-profit organization dedicated to providing lasting memories through the art of photography to families whose children are facing life threatening illnesses."

And Now for Something Completely Different: [clop clop]

I was going to reference a roller coaster, implying redemptive ups and promising downs -- being taken on a ride, yes, but always well worth it!  Eye on the prize and all that, eh, wot?

But I can't pull it off.  I didn't sleep last night for fretting.  Also for all the hilarious feline antics that seemed to inevitably end somewhere on my body -- Marmy would chase Dobby and so, of course, the only place possible for them to both end up was... on my hip, my knee, my chest.  Anywhere on me.  The FuzzBall Kitten played ferociously with his collection of stuffed mice, batting them around the bed until he'd lose them... somewhere under me -- under my arm, my feet, my head.  Anywhere on me.  This required that he dig, and Buddy Boy hasn't learned the meaning of modulation.  He knows one speed and one intensity, and he loosed both on.... me.

Interspersed with all that running, sliding, and digging were bursts of laughter from Fred's workroom.  I still don't know what he was doing back there -- likely watching videos or a film -- but he clearly couldn't help himself. 

So at about 3 AM, I quit trying and surrendered to the fates.  Twelve hours later, I feel like I have Saran Wrap on my eyeballs.

This Philly Thang?  It's not going to happen.

No, no one has told me it's off.  But the incredible disinterest in making it happen sends a clear message. 

The Party Line hasn't changed:  Dr. Schwartzman is booked through 2013 and the offer of an "expedited appointment" seems to have been a meaningless one.  Like some kind of coupon given out to all comers but never redeemed.

Carol said to me, in a mildly scolding tone, that "she's working on it" but right now there is no way to schedule an expedited appointment.  It feels more and more like I've been caught with my pants down in the middle of a Monty Python skit. 

Maybe this one:

Host: With me now is Norman St. John Polevaulter, who for the last few years has been contradicting people. St. John Polevaulter, why do you contradict people?

Polevaulter: I don't!

Host: But you... you told me that you did.

Polevaulter: I most certainly did not!

Host: Oh. I see. I'll start again.

Polevaulter: No you won't!

Host: Ssh! I understand you don't contradict people.

Polevaulter: Yes I do!

Host: And when didn't you start contradicting them?

Polevaulter: I did! In 1952!

Host: 1952.

Polevaulter: 1947!

Host: 23 years ago.

Polevaulter: No!

(GONG!)

-- The Man Who Contradicts People from  Monty Python's Previous Record

It's equally possible that my role is just to call out a reminder now and then: "I'm not dead [yet!]."

MORTICIAN: Bring out your dead!

[clang]

Bring out your dead!

[clang]

Bring out your dead!

[clang]

Bring out your dead!

[clang]

Bring out your dead!

[clang]

Bring out your dead!

[clang]

Bring out your dead!

[clang]

Bring out your dead!

[clang]

Bring out your dead!

[clang]

Bring out your dead!

[clang]

Bring out your dead!

[clang]

Bring out your dead!

CUSTOMER: Here's one -- nine pence.

DEAD PERSON: I'm not dead!

MORTICIAN: What?

CUSTOMER: Nothing -- here's your nine pence.

DEAD PERSON: I'm not dead!

MORTICIAN: Here -- he says he's not dead!

CUSTOMER: Yes, he is.

DEAD PERSON: I'm not!

MORTICIAN: He isn't.

CUSTOMER: Well, he will be soon, he's very ill.

DEAD PERSON: I'm getting better!

CUSTOMER: No, you're not -- you'll be stone dead in a moment.

MORTICIAN: Oh, I can't take him like that -- it's against regulations.

DEAD PERSON: I don't want to go in the cart!

CUSTOMER: Oh, don't be such a baby.

MORTICIAN: I can't take him...

DEAD PERSON: I feel fine!

CUSTOMER: Oh, do us a favor...

MORTICIAN: I can't.

CUSTOMER: Well, can you hang around a couple of minutes? He won't

be long.

MORTICIAN: Naaah, I got to go on to Robinson's -- they've lost nine

today.

CUSTOMER: Well, when is your next round?

MORTICIAN: Thursday.

DEAD PERSON: I think I'll go for a walk.

CUSTOMER: You're not fooling anyone y'know. Look, isn't there

something you can do?

DEAD PERSON: I feel happy... I feel happy.

[whop]

CUSTOMER: Ah, thanks very much.

MORTICIAN: Not at all. See you on Thursday.

CUSTOMER: Right.

[clop clop]

-- Monty Python and the Holy Grail

For further dissonance, I've got Seinfeld's Soup Nazi between the ears, shouting "No Philly for you!"

Search Words for 5/16/2011

It's so much more than just a list of terms plugged into Google Search by people I will never know.  It's how they got to me, to us, to Marlinspike Hall, and somewhere in the intervening space is a story, are many stories.  It's about how they got here from there, proving not just that you *can* get here but that you come different ways for different reasons -- detours, bridges, toll roads, backseat drivers, and that rare bird of a map reader who interprets west as a left turn (I'm just sayin').

periwinkles and driftwood::This is the way we went to the beach when I was a kid. 

As soon as you hit Kinston, you could smell it. We would stop at the grocery store that sits right there when you come off the bridge from Morehead City to Atlantic Beach -- for bleach and ammonia, hot dogs, and Maxwell House in the big can. We ate Wonderbread at the beach and whole wheat the rest of our lives. Setting the indoor picnic table sometimes just meant spreading out newsprint and big platters of boiled shrimp, salad, and loaves of decent crusty bread.  Garlic butter.  Melons for breakfast, and toast.  No one in the ocean before 9 AM, curfew starts at 9:30 PM, remember to tie a flipflop to the umbrella in case you get lost.  They sent out a search party for me one night after I fell into a huge sand dune and just stayed there, mute, trying to decipher constellations and my Mother, both. I'd just had my appendix out;  Chiggers crawled on my legs, ate me up, I scratched myself raw..  Not chiggers, sand fleas.  My aunt chaperoned a bunch of us for Junior/Senior Weekend -- a boy fell off of someone's porch -- he was perched (backward) on the railing that jutted out over a concrete driveway.  Lois made us all godawful sloe gin fizzes; He died.  He wasn't from our school but was good friends with the Bennetts.  My cousin and I made a chowder out of periwinkles and all the grownups actually ate it.  (It was full of sand.)We spelled it "perrywinkle," wrote out an official recipe in pencil on a lined index card that we stuck in the middle drawer of that old-fashioned enamel table in the kitchen.  I went to the cottage one winter, alone, and sat on the porch, right on the stormy ocean.  They called that The Front Porch.  Visiting the cemetery in Beaufort was important but I couldn't begin to tell you why.  After my summer months there found a rhythm, time fell into bayside days and oceanside days, interrupted by stormy afternoons when we'd pile into the drugstore, where everyone got to buy one paperback, just one.  Dusk.  The running lights on shrimp boats.  The pay phone on the pier.  Swimming past the breakers. Knowing who was boss when the undertow took you twisting down.  Yogurt on sunburn.  Ice clinking, bourbon, scotch, beer.  Hearts, spades, bridge, Scrabble and crossword puzzles.  Turning into the wind.  The stories about my sister Copper being born smack dab in the middle of Hurricane Hazel.  Driftwood fires, sparking.

topiary and gingerbread::I like this road because of that house, the one with all the wild flowers.

I turn left a good half mile before I have to just to see it.  There's the wire form for a bear topiary -- kind of a Pooh -- that sits in the middle of one patch, and they decorate him for the least little holiday.  National Teachers Day, Cinco de Mayo.  Canada Day, Bastille Day, big football Saturdays.  Past Sterling and Oakdale, but before Clifton Road.  One year the yard was overgrown and the bear undecorated.  I mean, he stayed in his Santa duds until they just wore off him.  I think a baby died.  Then, like nothing, the bear grew rich, thick, and green again and there were raised beds of every kind of flower, as if from nowhere.  Can't even recall the house now -- brick, compact.  One of the gingerbreads, big slants to the roof, dark masonry.  Everyone felt special, peeking at those flowers, that bear, like it was a private kiss you'd sneak.  I thought, What if they move?  What will I do then?  Who will change the bear?

 waffle cones and cockapoos::There used to be a Dairy Queen right there.

I would pick up my parents' Saturday evening dinner order on the way home from a day of tennis in the park:  a pound of barbeque, a pound of slaw, and hushpuppies.  Then I'd cut through the dirt lot, through the heady smoke from the pit, and drive on up to the DQ in my 1965 baby blue Cadillac.  It was a minor revolution, delaying that vinegar-heavy chopped pork for a vanilla shake.  That's right, I was every bit as exciting as they were, me and my vanilla shakes.  The vet we liked was right across the highway, on the westbound side of Hwy 70, heading back into town.  I hated going home once they lit the downtown courts -- I could have picked up games all evening, and if Teresa didn't have to babysit, we could play doubles with the country clubbers who forgot to make a reservation.  It'd be okay at home for a little while -- setting sun on the lake, the attack of pastels, the dog chasing geese. I'd follow him down to the water, turn 'round and look back at the house, their dream house, but you could tell just by looking that nobody lived there.  Mom made me a big salad  so that I could keep company while they ate their pound of barbecue, pound of slaw, and hushpuppies.  I stayed a vegetarian for 25 years.  Sometimes she'd ask me to stop at the Dairy Queen and bring home hot fudge sundaes.  I always told her I forgot and kept the extra money for gas, always planning to get in that car, pick east or west, and go, go, go.

We generally find what we're looking for.  My "stats" page says these are the words that brought folks here today after being plugged into Google Search.  These aren't the only pathways and story lines, of course, but they are all I have as clues tonight, and they suffice.

ina mae oxendine
serena williams catsuit
pesach 
venus williams ass
canned peaches al swearengen 
dame marjorie charden 
dr schwartzman rsd 
ketamine coma february 2009
"andrea gianopoulos"
mike vermeer tennis
3 invisible dicks
picture of bouillabaisse 
pollyanna woodward naked
cushingoid
serena williams catsuit
serena williams cat suit 43
serena williams underpants 
lindsey baum 
taiji dolphins
monopoly game pieces 
taiji
focaccia di recco 
anna kournikova tennis skirt
taiji japan
kamasutra 
dr schwartz rsd puzzles
sequential frame spinning back fist
rebecca allwine
dolphin killing
andrea gianopoulos

carrara marble quarry

and

((pfizer or wyeth or johnson&johnson or j&j or "johnson & johnson" or "johnson&johnson" or "j & j" or hoffmannlaroche or "hoffmann la roche" or roche or novartis or glaxosmithkline) and (tsunami or earthquake or erdbeben or quake or japan or japanese)) and (donation or donate or donates or spende or spenden or spendet)

New Nurse

Though I am tempted to insist that she appear at the same time and in the same place with Nurse K, I enjoy reading New Nurse In The Hood's blog.  It's... scrappy.

Also, like the always aforementioned Nurse K, New Nurse reminds me of why you will never find me in an Emergency Room/Department unless my ACTUAL emergency involves lots of blood (and gore, lots of gore) that cannot be resolved by applying feminine pads to my shin. (Please try to keep up.) And even then, I might not go.  I mean, who knows, Dr. Schwartzman's Office Staff might try and call me with a free hair appointment.  Or a gift card for a shopping spree at Amputations R Us.

I'm fine.  Really!

Anyway... New Nurse is good.  And if only 10% of what she relates as happening in her ER/ED (screw WhiteCoat!) actually happens?  Then she is a far better person than I would be under similar circumstances.  Some of these folks qualify for Group Memberships on my List of People Who Need Killing.

Would you HUSH, please?  I said, "I'm fine," and that's what I meant: I'M FINE.

So... New Nurse gives us the run-down in this post entitled "Just an overall poor effort" -- from last Wednesday.  An optional title?  One girl, no brain.  Or something like that. 

It's an old tale, really, as old as time.  Shakespearean in its ridiculousness. 

Yes! Pregnancy games!  How to waste precious medical resources, in human as well as monetary terms!

From reading many an excellent medical blog, I get the feeling that a good version of New Nurse's "poor effort" post could be written weekly by each of them, and from fresh, actual material, too!  That's sad and pitiful.

Without further ado... why not start her post here and then finish it over there at her place?

Just an overall poor effort

Chick checks in last night for nausea x 5 days, with positive pregnancy test at home. Let me pop that in the hood hospital translator for you right quick:
I want a sonogram, and maybe another pregnancy test. Starts going into an in depth discussion with the triage nurse about when she started having sex with this dude that is with her currently. Listen sister, this isn't Maury, we just asked your LMP, next please.
So it was utter pandemonium and fuckery up until about 4 am last night, people were forming human pyramids in the waiting room because there were no more chairs, the line to check in wrapped around the building and everyone had chest pain. I had two dudes who fell off of roofs, like, really actually fell off of them, check in within 5 minutes of one another. One had a broken C2. So, uh, obviously this young woman's complaint was not of immediate concern. So she and baby daddy leave and do some shit at Walmart or whatever and then come back...

Begging and Beseeching, Entreating and Imploring

  “Hope” is the thing with feathers -

That perches in the soul -

Emily Dickinson 1830–1886

Okay, so I'm STILL waiting for a call back from Philly about an appointment with the illustrious Dr. Schwartzman (see previous gush).

After days of some sort of Stupid Attack, I am finally remembering my well-earned expert opinion on... Experts.  Correction!  Make that: I know whereof I speak concerning those experts celebrated by a cult-of-personality-based community.  I've lots of unfortunate experience in this arena -- Derrida, Fish, Foucault, Jameson -- but not near enough, apparently, since here I sit in Marlinspike Manor's Computer Turret instead of the nearest Ivory Tower.

It's really more the Middling Players who are the actual offenders, anyway -- Bersani, Hollier, Lentricchia, Most Poets.  You learn the most from this moderate and scruffy crowd but you also accept more [unwarranted] abuse than is wise.  The accumulated angst and stress of simply sharing a town with them eventually detracts from the information received.

Note to other bloggers contemplating making their own Lists of Four:  Alphabetize.  That's the only solution to the Order Problem.  Well, I suppose you can also opt for a Living versus Dead construction, further subordered by Date of Death.

I am reminded of a conversation with Grader Boob from a few years back.

Grader Boob: Great news. I finished that pain-in-the-ass paper for the Incomplete I got in Misogynous Medieval Literature my last year in grad school. Knocked that sucker out over the weekend.


Me: Congratulations, My Brother-Unit! So what did the prof have to say?

Grader Boob: Not much. He died six weeks ago.

Grader Boob (again): But that's not the point...

I consider myself lucky to only be at the point where my doctoral committee now consists entirely of Emeriti.  Honorifics and Soporifics, that's the name of the game!

Putting my dementia aside, and returning to the present stressor of trying to relieve this soul-destroying pain afflicting my body, and, some might argue, my cognitive powers, as well ===>>

Is it Dr. Schwartzman's fault that there's an attention-starved group of people who share a sharp interest in the pain relief he may be able to offer?  Not in the least! But I wonder if he has a sense of it, really.  Does he feel it in his bones, in his hands?  We're going crazy out here;  We're going nuts for some relief.

In other words, don't screw with me when it comes to Matters of Hope.  Don't deign or feign, just shoot from the hip, be direct, be honest.  I say again:  Don't screw with me when it comes to Matters of Hope.

Is it to Schwartzman's credit that he is equally well known for being a compassionate man, and that compassion complements intellect like no other attribute known to humankind?  Of course it is... particularly since that assessment appears to have held very true over time. He sounds like a remarkable person.  I hope to meet him.

Someday.

Does any of this mean that his Schedule Coordinator gives a royal patootey about me, sitting here in rural Tête de Hergé (très décédé, d'ailleurs), once again pondering a Do-It-Yourself Amputation, though I still haven't solved the problem of how to cut off the last arm without at least minimal assistance?  Oh sure, I could probably rig something up with pulleys and the use of my awesomely muscular lip muscles, but the whole plan goes pfffffttttttttt once I decide that I don't want to bleed out, and that tourniquets are gonna be necessary. 

Errrr, I think not.  Said Scheduling Coordinator surely has separated herself from the needy tentacles of the thousands of patients seeking an audience.  She guards the gate, keeps the dates, protects the doctor, gets it done.

If the cult-of-personality-based community of CRPS sufferers were a wealthy community, things would be different.  We'd have decent DIY Amputation Kits, already! The right vises would be included, there'd be extra hardware, sharper blades, and clean-up would be a breeze.  Appointments would be made, and made reasonably.  For instance, I confess to thinking that there MUST be someone else in the Neuro Department with at least a faithful simulacrum of Schwartzman's skills, having been trained by him -- and with whom I might have an appointment within a reasonable period of time.  I am redefining "reasonable period of time" daily.  Right now, it means "within a year." Yesterday, it meant "around six months." Last Thursday, when I made First Contact, it meant "any day now, possibly tomorrow."

Yes, so... the Gatekeeper of Appointments has laid her foundation -- I gasped, suitably, when immediately reminded that the "next available" appointment with the Famous Doctor was in 2013.  Right.  Got that.  Knew that years ago.  Part of why I never bothered.  Y'know?

But, yes, so... I gasped.  "REALLY?  YOU'RE KIDDING?" It was passable.  She seemed satisfied that I was suitably in awe.

Because, of course, The Personality has thrown me the bone of a promise of consideration, of being worked into the packed planner.  I recognized Emily Dickinson's Thang avec Feathers right off the bat.

Then it became a matter of her never having heard of my health insurance coverage, you know, that coverage initiated by My Hero, President Obama.  Of course, me yelping at her about how it is administered by "JEFE" instead of the correct "GEHA" did not promote my cause in the least.  I do this regularly, Friends.  I don't know why JEFE strikes me as the thing to yell out in the identical manner that I might scream BINGO, but it does. 

By the time I was able to mutter GEHA, it was too late, I was relegated to the Hinterlands, to a I Will Call Back Tomorrow Morning Status.  Also informing that decision was her strange assertion that "the computer won't take your insurance's 800 number." I was tempted to follow up my calls of JEFE, GEHA, and BINGO with OVERRIDE, but thought better of it.

Enter Buddy the Kitten.

Oh, hush.  You knew he was going to snake his little squirrelly self into this mess.

He was apparently back at chewing wires on Friday and the phone was out most of the morning.  Therefore, I choose to believe that she tried to call me, and could not, due to the dastardly deeds of this reprobate kitten.  Still, I had the phone in my shirt pocket the rest of the day, even as I worked with doughs and slippery cold dead fowl (but never at the same time, oh no, never at the same time!).

Fine, thought I, slamming shut the oven door on the last batch of chicken carcasses.  Monday, she's gonna call Monday.  Monday is rapidly disappearing as I waste time writing this dejected post.

Why don't I call back?  Well, I am going to, thankyouverymuch.  I have established an artificial deadline of 3 PM, at which time I turn into someone with a backbone.

Unfortunately, my extensive experience with cult-of-personality situations and the gatekeepers thereof tells me that I will be dealing from a position of weakness, as I am in the position of begging and beseeching, entreating and imploring. 

That was Fred's contribution to the process thus far:  "Have you, ma chère prof, sufficiently begged, beseeched, entreated, and implored?" 
The answer is NO.  I haven't cajoled enough, haven't made my case, haven't had, in fact, the least bit of interest in going down that road. 

Am I supposed to announce that my pain score is stalled between 7 and 9 -- when I actually don't even believe in or understand the God-forsaken System of Misery Measurement?  Am I supposed to have my doctor make the call, so as to invoke preening, primping, fawning, and immeasurable posturing?  Should I weep over the telephone, sob a bit?

Well?  Yes?  No?  Never! Maybe?  It all depends?

I go back to consult with the doctor who prescribed the ketamine infusions for me here on Thursday.  It's going to be a chess match of a conversation.  Hopefully, I will have, by then, a date for evaluation in Philly, which would give me a bit of a conversational edge.  I want him to know how much I appreciate the effort he's made here but I also need him to accept that a different protocol is in order.  It's not that he is not as "good" as Dr. Schwartzman;  It's an issue of specialization and experience.

I don't feel badly about how this all got started.  In fact, I need to remember that -- all I did was email The Expert with a real question about how to get the most from these lower dose and infrequent versions of subanesthetic ketamine infusions. 

And The Expert knew compassion and said Why don't you come?  And what all of THIS is (waving my hands around in an effusively inclusive way)?  This is ME, TRYING.

Darned cat.
It's all Buddy's fault.

 

fouetté rond de jambe en tournant, avec poulpe

The Elder Brother-Unit, Tumbleweed, maintains several blogs. I only follow American Idyll with regularity. It turns out, of course, that I've been missing good stuff on the other sites.  He illustrates himself, is all I can say, and I'm hungry for each glimpse.

The video below is mesmerizing.  The best meditations skew vanishing points and horizon lines, twist sinewy, all sinewy, soft strong form, the shape of water.  If you've missed me these past few days, that's the where and what of it.  I've been contemplating dancing sea creatures.





Uploaded to YouTube by RSNOOI on Mar 31, 2009, who wrote:

This white octopus was filmed with a high-definition underwater video camera at 6600 feet depth 200 miles off the coast of Oregon in September 2005 as part of the VISIONS '05 expedition led by Professors John Delaney and Deborah Kelleyof the University of Washington. Little is known about the deep-sea octopuses that live in proximity to the hydrothermal vent fields associated with theunderwater volcanoes of the Juan de Fuca Ridge in theNortheast Pacific Ocean.


This video features the Grimpoteuthis bathynectes species. Sometimes nicknamed the Dumbo octopus, its ears are really fins that help it move through the water.


Primary sponsors of the VISIONS '05 Expedition were theNational Science Foundation,W.M. Keck Foundation, NOAA Coastal Services Center, University of Washington, and the ResearchChannel.


Special thanks to Jerome M. Paros and Elaina Jorgensen.


Music courtesy of Bryan Verhoye.


Video production by Nancy Penrose
© University of Washington, 2009

While my mind was still all wavy and without perspective, I ran into this bookend of a dance video, a production by the Moldova Ballet School:




Eugen Garnet/ Massenet. Meditation
Uploaded to YouTube by MrViorelMIRON on Apr 27, 2010

moldova ballet school

Holly McRae: Update from Hawaii

Holly McRae updated her journal over at CaringBridge today with a profoundly moving entry on her daughter Kate, their "sweet girl." The whole family has been on vacation in Hawaii, swimming with dolphins, relaxing -- but never really escaping the reality of pediatric brain cancer.  They are headed home in a few days and back to tests, procedures, and treatments.

Holly is an amazing writer and a more amazing parent, mother.  Today, she seemed to feel it necessary to defend herself for being honest -- even when her honesty is so infused with integrity and faith that my spirit is inspired, no matter how sad the news. 

I know her statements today must reflect some unkindness that she has encountered, perhaps someone's refusal to meet her where she happens to be, or -- worse -- someone's judgment of how she and Aaron have painstakingly chosen to proceed.  And that makes me really sad... but mostly angry.  (As much as Holly inpires me, I clearly have a long way to go...)


Link to Kate's CaringBridge Page

Teaching Life Skills: Nothing New Under the Sun

Is it true that there is nothing new under the sun?

I believe that we may soon have to stop beginning sentences with "Someone ought to..." -- followed by "pass a law," "invent a new plot for murder mysteries," "do something about [all the things I am too lazy to address]," and, now, "write a Guide to Life."

At some point on my journey with disability, I subscribed to a governmental online publication called, creatively, the Disability.gov Daily Digest Bulletin -- my daily link to a website dedicated to "Connecting the Disability Community to Information and Opportunities."

I don't check out all the forwarded information, in part because the descriptions are so dry and uncool.  Dry and uncool, I like to believe, are not my thing.

But, once in a blue moon, usually in a period of high anxiety, I follow up.

A pictorial debt of gratitude to Dave's Cupboard, specifically a blog entry titled "Stupid Small Appliances."
Photos above: The Pancake Factory, The Salad Shooter Pro, and The Presto Tater Twister

This afternoon, Fred and I did a little decluttering, mostly of accumulated and unused small kitchen appliances.  The adage by which I was raised, that "[i]t only costs 10% more to go first class..." --WHAT?  Weren't we all raised by that tender admonition?  Didn't you hear that at every turn, at every developmental milepost? *

Anyway, we got rid of our cheap, plastic versions of your classy, desirable things -- like our Combination Espresso / Cappuccino / Juicer / and Jörg Führmann Grill.  Sure, you may have four separate, gleaming, monochromatic stainless steel, functional appliances -- well, la di da!

We started reflecting -- as we always do -- on the life lessons learned.  Turns out, this time, we were reminded of a corollary to the classic "what is worth doing is worth doing well." It's not so much that "what is worth buying is worth buying expensively," or even "it's best to purchase the best." It's more, "remember to upgrade according to your aging temperament"!

Once upon a time, I did not mind cleaning by shoving toothpicks up the slightly defective nozzle to the cappuccino steam nozzle (that doubled as a Miniature Pancake Maker in its Jörg Führmann Grill incarnation).  Spending twenty minutes scraping dried dairy foam seemed fair enough, given the joy I'd gotten from that tiny, tiny cup of coffee...  Now, though, now that the onus of caring for Marlinspike Hall rests on our shoulders?  If we're going to have cappuccino, it's either fork over the money for a decent machine, or discover the ease of doing it without a machine at all!

We reflected further -- as we always do -- but now, over a quick espresso.  In the course of our talking, we discussed child-rearing, having recently witnessed some bothersome examples of ill-mannered behavior that could only have begun in childhood (namely, the sight of a man urinating on the side of a neighbor's chateau).

Before we knew it, "[s]omeone ought to"s were flying out of our mouths!  In particular, "[s]omeone ought to publish a guide to raising kids, so that they learn not to pee on the sides of houses and to buy decent coffee makers."

At which point, I retired to the Computer Turret to check my email and blog traffic.  I've been feeling nervous about all the semi-formed plans to go to Philly for CRPS treatment -- how was I going to swing travelling that far when a trip to the Lone Alp in central Tête de Hergé can be debilitating?  Never mind trying to figure out how to pay for it!

Enter Disability.gov, of course.

I think with just a little effort, that website will serve as a terrific guide to taking advantage of this wonderful opportunity that has fallen into my undeserving lap.

Then... another entry caught my eye, and brought back my conversations with Fred:  Ready, Set, Fly! A Parent’s Guide to Teaching Life Skills.  I don't know yet on what page they discuss the complex issue of Being Sure to Urinate in a Bathroom and Not on the Side of Someone's Home, but Casey Family Programs, a Seattle-based Foundation started by the founder of UPS, has wonderfully and creatively managed to cover most everything else.

I mean, how great is it that the Guide discusses not only how to clean a Living Room, but also what a Living Room is, and the things that might be used or necessary to it.

Oh, puh-leeze, People!  I am years away of being over getting upset that there are kids growing up without Living Rooms, or without knowing how to clean any sort of room, much less a luxury room like a Living Room.  Get over it.  Wait until you get to the "ABCs of Pregnancy" -- not what any of us want as part of a parental guide...

What has been will be again, what has been done will be done again; there is nothing new under the sun.





* Honestly?  I still live by "[i]t only costs 10% more to go first class," though I am more and more aware that the 10% figure is in dire need of upward revision.

Philly Bound?

I rarely send out an email loaded with blind copies, mostly due to the divergent nature of my group of friends and family.  This morning, though, was a wonderful exception. 

Hi --

This is a group email. I wanted to update everyone on the latest. An opportunity has come my way that I am excited to pursue.

Dr. Robert Schwartzman is one of the few true experts on CRPS/RSD in the world. He was the first to follow strict research protocols in the administration of the so-called Ketamine “coma cure,” pursuing this in Germany with great success. Dr. Anthony Kirkpatrick has a similar program in Mexico. Several years ago, they began investigating subanesthetic (i.e., non-coma) Ketamine infusions, and this option has become available at a short list of places throughout the United States. However, not every site employs the same protocols for administration of subanesthetic Ketamine, so it is sort of a mixed bag in terms of success.

I was lucky enough to find a location offering the treatment here in Tête de Hergé. Unfortunately, the protocol being used there is more conducive for treating other types of severe, intractable pain. It seems that CRPS responds best to what amounts to a blitzkrieg – [outpatient]10 days straight at a fairly high dose with follow-up “boosters," or [inpatient] 5 days continuous infusions, also at a high dose. The program at the X Center here is limited by funds, space, and staffing, and currently can only offer the treatment 3 days a week in short sessions.

After 6 infusions, spaced over a couple of months, I had no improvement. I wrote Dr. Schwartzman two weeks ago, asking what could be done to optimize the impact of the infusions. He wrote back with some explanation of the protocol he believes most effective, and invited me to see him in Philadelphia, where he is Chair of the Neurology Department at Drexel University College of Medicine. But it turned out that he has over a 2-year waiting list of patients, so I curbed my enthusiasm and began to scope out other options – for example, there is a Ketamine program at the Hospital for Special Surgery in New York City.

Then, yesterday afternoon, I got an email from Dr. Schwartzman’s Clinical Nurse Specialist, Ms. D, offering me an “expedited appointment.” It’s been a good while since I have cried for happiness.

Ms. D added: “He would also welcome your physician and/or the staff at x Institute to come to his RSD pain clinic any Monday to observe and discuss treatment protocols.”

There are still substantial problems and variables to address, beginning with any “exclusion criteria” they may employ at Drexel, and the logistics of getting there [$$$]. Even so, it would be worth going simply for the evaluation, I think.

Clearly, I am not quite done with what the X Center is offering and will see the doctor there soon.

[Click HERE for a short bio of Dr. Schwartzman.]

I have not been the most reliable communicator these past few months and hope everyone can forgive me. Of course, some of you are likely sick to death of hearing from me, and to those folks, I can only say “Thank you for your forbearance.” If anyone has any great ideas on how to get this done, please write. (Would you like to go with me?!) And if EVERYONE would think good and encouraging thoughts, I’d appreciate it!

Best wishes to one and all --

(Bianca; Eljay; Prof -- and other assorted noms de plume)

CALMARE -- calls itself a TENS device

This is a copy of what Competitive Technologies submitted to the FDA as part of the requirement for 510(k) Premarket Notification.  I think the company's own application answers quite a few questions!


Device Classification Name:  stimulator, nerve, transcutaneous, for pain relief
Regulation Description:  Transcutaneous electrical nerve stimulator for pain relief

510(k) Number: K081255
Device Name:  SCRAMBLER ST 5 TENS DEVICE
Applicant:  COMPETITIVE TECHNOLOGIES,INC.
49 plain st.
north attleboro, MA 02760 2

Contact:  mary mcnamara
Regulation Number:  882.5890
Classification Product Code:  GZJ
Date Received:  05/02/2008
Decision Date:  02/20/2009
Decision:  substantially equivalent (SE)
Classification Advisory Committee:  Neurology
Review Advisory Committee:  Orthopedic
summary
summary
Type: Traditional
Reviewed by Third Party:  No
Expedited Review:  No

From the FDA website: 

Section 510(k) of the Food, Drug and Cosmetic Act requires those device manufacturers who must register to notify FDA their intent to market a medical device. This is known as Premarket Notification (PMN) or 510(k). Under 510(k), before a manufacturer can market a medical device in the United States, they must demonstrate to FDA’s satisfaction that it is substantially equivalent (as safe and effective) to a device already on the market. If FDA rules the device is "substantially equivalent," the manufacturer can market the device. If the device you are researching has been in commercial distribution before 1976 or is substantially equivalent to a device already on the market, you should search FDA’s 510(k) releasable database.

So the irony is that the company claimed and was deemed, in fact, to have "substantial equivalence" to preexisting TENS devices... But now it wants to distance itself from any comparison to TENS technology. 

{snort"}

Prof is Pissed and Buddy the Kitten Finally Goes UP!

I am, as they say in the Southern Realms of the United States of America, fit to be tied.

First, I'm febrile, oh so febrile, as febrile as febrile can be....    ♪ ♫

Second, there is a person on YouTube who keeps leaving me kind messages.  The person claims to be a Mom whose son was cured of CRPS by a contraption and bless her, she thinks I should get cured by a contraption, too.

And all those good wishes and sweet suggestions are about to piss me off in a royally major way.
That's what you get for ending all your messages to me with a cheerful "God bless" and for being all conciliatory and stuff.

This person is pushing the bleeping Calmare Magic Poof-the-Pain-Away Crap Technology... and you probably haven't heard of it, but then you probably don't hang out on message boards dealing with CRPS.  It's utter nonsense and is being put out there by the devious, the deviant, and the people that the devious and the deviant have hoodwinked.

By the way, no one should hang out on message boards dealing with CRPS. It's not a healthy habit.  I mean, you get a bunch of people who are not getting better (why else would they be there?), who are, by self-definition, People of Pain, and who are likely socially isolated due to disability, the aforementioned pain, and pain's stalwart companion, depression.  It just sounds like so much... FUN! 

So that's a rule, then.  No hanging out in such spots.  But a regular check on good threads, that's permitted.  I would be lost without the helpful suggestions I encounter on those boards -- where to find the softest clothes, what doctor is doing what treatment, news of clinical trials, morbid jokes. 

Mostly, though, I check in -- at least 3 times a week -- to take a look in a mirror, mentally as much as physically.  Has anyone else considered taking a chainsaw to their legs?  After we lop off one arm, who can we rely on to get rid of the other one?  Important things.

I also check in to see if what is happening to me should send me screaming into the frozen hinterlands or if it is just part of the normal abnormality of this weird, weird disease.  Like the fact that my leg is leaking... Or that I have 2 blue toes, 1 red, and 2 tartan plaids.  It is somewhat reassuring to see pictures of other people's fingernails -- Hey, their nails are falling off and cruddy looking, too!

I promise you, however, that it will be a cold day in Hell before I author any version of the phrase "Being here makes me feel less alone..."   I suppose I should explain myself, but I'm not going to.  Because I know what I mean.  And whose blog is it, anyway?  Harrumph, squared.

Back to this irritant of a Calmare thingy.

At the moment, the only physician in the entire United States who has suckled at the tit of the inventor of the Calmare Magic Poof-the-Pain-Away Crap Technology is one Dr. D'Amato, of Rhode Island (or so I hear, over here in Tête de Hergé, where there is no illness, of course, nor traffic accidents).

Yeah, there *is* a guy opening up 14 pain clinics using the Calmare Magic Poof-the-Pain-Away Crap Technology (Spero Pain Relief Therapy clinics).  Guess what?  He's an OB/Gyn.  Just who I want doing pain management for a central nervous system degenerative disorder.  More from him in a moment.

Cut me some slack today, would'ya?
Give me some latitude.
I don't feel well and I can't get a'holt o'that there magic poof machine (and it ain't covered by insurance, neither.)

Ahem.  Okay.  The ibuprofen is kicking in.  I love ibuprofen.  I should own stock...

Speaking of stock: CTT is the parent company in the USA...and it's now a penny stock.  Or almost -- it closed today at 1.70.  Because some rubber-stamping idiot approved Calmare Magic Poof-the-Pain-Away Crap Technology as a vendor to the VA, all the devious, deviants, and the hoodwinked are going on and on about how if it's good enough for our Wounded Warriors at the "flagship" Walter Reed (I'm thinking they don't read the Washington Post), then, by gum, it's good enough for you CRPSers!

The Italian inventor was less circumspect, if you can believe it.  He claimed that Calmare Magic Poof-the-Pain-Away Crap Technology could reverse aging.

Now you're talking!

Meet, my friends, Giuseppe Marineo, and his explanatory woo and gobbledy-gook from the Italian arm of operations, Delta R&D:

Delta R&D is a bioengineering research centre with a unique history. It was born out of individual research work begun in 1983 by Giuseppe Marineo, a researcher and bioengineer, who advanced theories to reformulate the concept of disease (and the corresponding treatment) from a biophysical rather than biochemical point of view. The idea was to restructure the known features of both according to the principles of thermodynamics by means of an analysis and the detailed specification of the relations between entropy, disease, repair processes and ageing.


This new approach to the interpretation of the traditional aspects of medical science makes it possible to go from a highly heuristic system to an extremely conceptual and rationalized system, which can create models of disease and treatment so sophisticated as to render the experimental results highly predictable. If the latter are in line with the predictions they automatically validate the development model.
Furthermore, the very name of the theoretical system developed entails a natural transition from reductionist methods to systems theory which, in the present research, takes the form of a powerful working tool capable of providing adequate support for the development of therapies of practical utility.


In practice Marineo introduced into medical science the research and development criteria typical of engineering, in which the thoroughness of the preliminary theoretical work fully determines the expectations of the experimental verification of the method used. In 1987 the basic research was already sufficiently well structured to be supported by a technology capable of translating the theoretical system into a truly useful therapy.


The first experimental verifications fully confirmed the validity of the theoretical models developed and opened up concrete future prospects for the safe and non-invasive treatment of pathologies for which conventional methods had proved ineffective.
In 1998 the Italian scientific community, which had been constantly informed of all research developments, deemed the product of 15 years research to be scientifically valid, the theoretical principles and experimental data to have been clearly demonstrated and the bioethical principles regarding the respect and protection of the patient to have been respected.


In other words, the research carried out by a private individual was accepted and supported by the public authorities. It was consequently possible to begin official university and hospital studies, at the conclusion of which the first international publications were produced.


In order to support these changes, in May 1998 Delta R&D was set up, thus marking the beginning of the mature stage of this individual research endeavour. Although the original philosophy was retained, a logistical structure was now available to satisfy the new phases of development and to maintain and expand relations with the international scientific community.


In Italy the Delta R&D company became a research centre incorporated into a public structure thanks to the prestigious acknowledgement of the Tor Vergata University of Rome in the form of an agreement in which Delta R&D is recognized as part of the scientific structure of the university while retaining its autonomy and individuality.


Outside Italy, Delta R&D, the theoretical and research work on the Delta-S Entropy Variation Systems and “Scrambler Therapy” pain therapy resulted in Giuseppe Marineo receiving scientific awards for the originality of the basic research, in addition to numerous other acknowledgements by the international scientific community inherent in the acceptance of the proposed published works.

I dunno, maybe that's not your favorite type of woo and gobbledy-gook.  How about this?  From the lips of Dr. Robert Chalmers, former OB/Gyn:

Q-How do you do Calmare , Exactly?


The treatment is actually quite simple. It involved the machine, wires and surface electrodes that deliver the electrical waveforms. The surface electrodes are the same used in heart monitoring such as an EKG. The patients sits or lies comfortable during each 45 minute treatment session. The electrodes are placed OUTSIDE the area of pain so they will not increase the pain in patients with allodynia from CRPS




Q-How does it work?


The mechanism is completely unique. The primary issue with CPRS is the so called physiologic "wind-up" in the brain. This is a complicated change in the nervous system and can be traced at least in part to changes in NMDA receptors in the brain. We need to get to the brain to help with this disease. The use of electricity for the management of pain is not unique to the Calmare system and I am sure many RSD sufferers have tried traditional TENS therapy. However, the Calmare system is not anything like a TENS unit. Injury or other noxious stimulus in the body creates pain chemicals. These chemicals in turn get converted into electrical impulses by your nerves which get transmitted to the brain and get INTERPRETED by the brain. When we use the Calmare system we "control" the electrical impulses that the brain is recieving. By manipulating the input into the brain we "convince" the brain that the area of the body where pain was present is now normal. We know that the brain can be taught, in medicine we refer to thoses changes as Neuroplasticity and there is quite a bit of interesting reading on that topic on the internet if you have the time. I was the worlds biggest cynic prior to actually treating patients with the machine. I thought it was TENS or Placebo but nearly every patient I have treated has already tried TENS therapy and they can tell you this is nothing like TENS.It works!

Mystery solved.  "It works!" He hits all the right buzz words:  allodynia, neuroplasticity, NMDA receptors, physiologic wind-up...  Oh, gag me with a spoon.  Does any of it make sense?  Not a bit.

You want real breaking news?  Hmm?  Do you think you can handle some real news?  Well, do ya?

Jessep: You want answers?

Kaffee (Tom Cruise): I think I'm entitled to them.

Jessep: You want answers?

Kaffee: I want the truth!

Jessep: You can't handle the truth! Son, we live in a world that has walls. And those walls have to be guarded by men with guns. Who's gonna do it? You? You, Lt. Weinberg? I have a greater responsibility than you can possibly fathom. You weep for Santiago and you curse the Marines. You have that luxury. You have the luxury of not knowing what I know: that Santiago's death, while tragic, probably saved lives. And my existence, while grotesque and incomprehensible to you, saves lives...You don't want the truth. Because deep down, in places you don't talk about at parties, you want me on that wall. You need me on that wall.

We use words like honor, code, loyalty...we use these words as the backbone to a life spent defending something. You use 'em as a punchline. I have neither the time nor the inclination to explain myself to a man who rises and sleeps under the blanket of the very freedom I provide, then questions the manner in which I provide it! I'd rather you just said thank you and went on your way. Otherwise, I suggest you pick up a weapon and stand a post. Either way, I don't give a damn what you think you're entitled to!

Kaffee: Did you order the code red?

Jessep: (quietly) I did the job you sent me to do.

Kaffee: Did you order the code red?

Jessep: You're goddamn right I did!!

Oops.  Sorry...  It just feels like A Few Good Men kind of an afternoon.  Did I mention that I am febrile?
That I'm febrile, oh so febrile, as febrile as febrile can be?   ♪ ♫
Oh, I did.  Okay.  Well, I bet you don't know that I sprang a leak!  Yep, drip, drip, drip goes my leg, leg, leg...  Oh, I mentioned that. 

How about this?  I feel cranky.  That's gotta be news, because I am NEVER cranky!

WHAT IS THE CURE FOR CRANKY?

BUDDY THE KITTEN, of course.

It turns out that the kitten was not being a contemplative, not waxing philosophical.   He wasn't meditating on the idea of UP after all.  The Kitten wants the cord to the ceiling fan!  That's what he's been gazing at in adoration for the last few weeks.  What cracks me up is that he had the other two cats doing it, as well as a human or two.

word.

word to the wise.  when you so cleverly think you are studying up on a couple of antibiotics?  and when, after a while, dosages 'n shit start to look kinda strange?

check to see if you aren't on a site called:

The Layman's Guide to Medication Use in Pet Rats.

Music of the Day

Uploaded to YouTube by jetsandmets93, two years ago



Uploaded by realpocobyrds on Dec 24, 2009

an email to diana and carol

I don't have the energy to rewrite what is going on in my head, so here is the text of an email I just sent off to two friends very familiar with my "issues":


Sometimes, when I get desperate, my luck changes...

Monday’s treatment was horrible. I started crying before they even started the i.v. – it just felt so futile. All I could think of was how this was my last chance for pain relief. I felt very bad because when I came out of it, I learned that the nurses were really upset by me being upset. But I couldn’t help it.

Okay, now... follow this story closely!

Last week sometime, out of desperation, I emailed Dr. Robert Schwartzman, the chairman of the Neurology Dept at Drexel University, and probably the most knowledgeable person on the planet about CRPS. I wrote him years ago and really didn’t expect an answer. I wanted advice on "how to maximize the benefits of my subanesthetic ketamine infusions."

When I got home Monday, there was an email waiting from him. It was very TO THE POINT:

Dear XXXXXX,


You have not had enough ketamine. You need ten consecutive treatments of two hundred milligrams per day with midazolam and clonidine. If this is ineffective, you need five days in the hospital with much larger subanesthetic doses of 40 milligrams per hour for five days. You would also need midazolam and clonidine with this dose.


This usually shows marked improvement. We will start some new work on stem cells and there are other treatments in the pipeline. If you can get up here and I will be happy to see you.


Best regards,


RJS

Just when I had no hope...

But I am getting ZERO support for doing anything more. Fred actually said, “How do you know he’s not just another quack?” I have talked about Schwartzman for YEARS! My go-to-guy actually had the nerve to write that I had already given it “the old college try.” I wanted to slap him.

I knew that Schwartzman has a huge waiting list, and yep, it would take two years just to see him.

Then into my head popped the “MCE” [Medical Centers of Excellence] program that is run by go-to-guy’s MDVIP organization – it is a system of referrals with top notch medical centers... It occurred to me that most cases of CRPS arise from orthopedic problems, injuries, and surgeries. One of the referral hospitals that MDVIP uses is the Hospital for Special Surgery in NYC – probably the number 1 orthopedic hospital in the country. So I went to their web site (it was 4 am...) and FOUND THAT THEIR ANESTHESIA/PAIN DEPT IS DOING INPATIENT KETAMINE TREATMENTS!

I also found something on their website that sounds exactly like what is going on with my shoulders:

 

(CRMO): Chronic recurrent multifocal osteomyelitis: “Chronic: because it does not go away for a long time. Recurrent: because it comes back. It cycles between active and dormant, symptoms and no symptoms, exacerbation and remission. Multifocal: because it can erupt in different sites, primarily bones. Each outbreak can be in a different part of the body. Osteomyelitis: because it is very similar to that disease but appears to be without any infection.” Wikipedia



DOESN’T THAT SOUND LIKE ME?????? That would totally explain why nothing grows in the lab!!!!!!

I need all my mental reserves right now – Fred is fed up. Dr. S (my go-to-guy) is fed up. But they can just get over it. I wrote Dr. S that we could start the process of getting me to the HSS in NYC when I see him in June. I want it done right this time. Last time, I was all set to go to Hopkins and ended up at the Medical College of Georgia with a man who did a consult in under 10 minutes (including review of the chart and x-rays).

Whew. Please don’t you two get fed up with me, either.

I so need to get some sleep.

Am I going crazy? Does the stuff I wrote seem reasonable to you? Does continuing the ketamine even make sense?

love, love, love

XXXXXX


"Love is patient, love is kind. It does not envy, it does not boast, it is not proud."
(1 Cor. 13:4)