Righten the odds

I thought nothing could get to me.  

Oh, it's okay, Dear Reader, my "jumping off" remains a trustworthy fact. But something did almost scare me to the point where I considered failure a decent enough option.

Shame stopped me, and stilled me, and brought me back to reason -- if, indeed, reason embraces notions such as God, and God's grace.

If, indeed, reason covers Kate.

I'm putting my newfound sobriety (oh, shut up) on the line and saying, "yes, reason covers not just a multitude of your miserable ass sins, reason also covers the unsullied, the babies, the loving mothers, the faithful fathers... yes, reason covers radiation and chemo therapies, covers the good doctors, nurses, aides, and techs... yes, reason covers daughter sisters and son brothers... and most definitely, reason covers kate.

I checked my email for the first time today (instead of the addicted hourly regimen followed by my Former Junkie Self) -- at 19:00. At roughly 19:00:23, I thought of my own failure, and how much of a likelihood it would become were the message I was about to read a very difficult one.  All I knew at that point was that it had been just over a week since Holly McRae had posted an update to her journal about Kate's journey on CaringBridge.  It was my catastrophic bent at that second to think the very worst.

I beg Holly's pardon as the necessary shift to it's-not-all-about-me takes hold. 

This is the entirety of what she posted (forgive me for that, as well) and if you've never met Kate through her mother's words before, consider a trip over to the CaringBridge to read all of her journaling.  It will move and inspire you.  It can almost make a believer out of anyone, just to righten the odds.

I continue to find it harder and harder to update. Not for lack of things happening, and most definitely not for lack of emotion, simply for the lack of words. No words seem adequate for what our hearts feel, on the good days and on the awful days. It is a constant daily battle to reign in our thoughts and fears concerning Kate. Being that I am the one who engages more of the medical side of Kate's diagnosis and reads more of the literature concerning it, I tend to struggle with it more heavily.


Kate is doing well. Of course everything is relative, and that being quite relative to her diagnosis. We are grateful the last chemo did not cause more symptoms or side effects in Kate than it did. She is easily fatigued, which is probably more related to the radiation, and continues with stomach pains here and there. Her appetite is unpredictable, so again we are having to be less strict with what she eats, simply to get her to eat some days. I have noticed that she also seems slightly less engaged with others outside of our home. I am not sure as to the reason, and have stopped guessing. I simply cherish the moments we see her full throttle at home.




Kate was horribly disappointed to learn that she would be getting chemo again this week. I guess she had forgotten. We had not! It has been a delicate dance learning to be grateful we have something to fight with, while at the same time despising those very treatments. She will have her bloodwork drawn on Tuesday to see what effect the chemo had on her blood counts and then proceed with the infusion of her biweekly chemo. I am sure we will also discuss a starting date for the Avastin, and begin scheduling her next MRI. We are obviously no longer on the every 3 month plan for scans. I was actually hoping for monthly MRI's and have realized that 2 months for now is probably best. It is a very delicate balance not scanning too early, and yet not allowing too much time to pass if cancer is growing unnoticed. If we scan before we allow time for the chemo to have an effect, there is the possibility we could see growth and take her off of one of the few medications that may work. The reason for not desiring to scan too infrequently is obvious. So our thought is her next MRI will most likely be early to mid July.




This month marks the 2 year anniversary of Kate's diagnosis. God has been working ferociously on my heart the past few months concerning just that. The disappointment and at times anger for that which she is faced. How we had hoped and prayed that at 2 years we would find our sweet girl cancer free, that we would be celebrating God's faithfulness and His mercy in allowing Kate freedom from the clutches of this disease. Rather we find ourselves battling 2 new tumors and facing the uncertainty of an aggressive and unforgiving disease that almost always ends in death. We find ourselves facing the ramifications of having had to aggressively radiate her entire brain and spine in hopes of sparing her life. We find ourselves craving the days past where getting the tangles out of her curly blonde hair was the most frustrating part of the morning. Now we wonder if her hair will ever come back.


And yet, despite our raging disappointments, God continues to be faithful. And He most definitely continues to be able to heal her. As much as my heart yearns to see her walk again without a brace and to see her right hand paint so beautifully as it once did, I am reminded she also faced a day she could not move her right side at all. A day when thoughts plagued us if we would ever see her move outside her wheelchair. If we would ever hear her sweet voice utter our names again, or tell us she loved us. So we celebrate the blessings mixed in with the current pains. We continue to fight for her life, and for her quality of life. And in the same breathe realize this life is not our ultimate home. Never have I been more grateful for that.




Tomorrow we celebrate a very sweet day in our daughters lives. Aaron will be baptizing both Kate and Olivia. So tomorrow we celebrate those things God has done in our daughters lives. And the rest of the week we continue the treatments hoping and praying Kate will have a lifetime to share those things with others. Thanks for being persistent in prayer for Kate's healing.

The Jump Off

Well, this methadone addict "jumped off" last night at precisely 6:30 PM. I'm not at the 24 hour mark yet, 2 more of those hours remain. You wanna hear something crazy? I've now started the "jump off" for Percocet -- retroactive to 5 AM today. I'm about at the 12 hour mark for that bit of lunacy.

The 30 hour mark for methadone is notorious for its difficulty, so tonight at just half past midnight is when the toughest times are anticipated to *begin*. Is that scaring me? Yes. Do I think I will emerge victorious in my battle against the Demon Opiates? Yes, indeed. Else I would not have "jumped off" to begin with. According to the written schedule I drew up over a week ago, I was so scared as to give each new level of methadone dosage FIVE days... Yet I decided last night to give the 10 mg level short shrift and only ONE day of experience.

My hands are twitching so much that I may actually have to run spellcheck.

We won't discuss my legs except to say that were my feet able to stand the feel of shoes, balletic toe shoes (size 15) might just slip right on. My toes seem to fusing...

And my knees are somehow imploding, bending backward.

And, yep, I am testing those knees every time the half-bath -- just 15 feet away -- calls.

And, yep, Fred is up to speed and greatly encouraging. I believe that my earlier read on The Fredster was Demon-Driven. Was I setting him and myself up as the excuse of my failure? I damned well think I was. But no more. Let's just say that I remembered, just in time, that Fred was raised on cowboy movies and cowboy philosophy, and that he cannot be envisioned in anything but a white hat.

Possibly the weirdest symptom of this withdrawal is how COLD I feel.

COLD in terms of temperature, You Numbnuts! I woke covered by heavy blankets, something that I just don't do. Always, I feel HOT, stifled by CRPS and its attendant pains. I even dialed down the temp for the air conditioner, again something that I just don't do.

The worst symptom is exactly the reason for which I began taking methadone to begin with, and that is PAIN. I feel every ache, every lancinating bit of neuropathic sadomasochism. It's the only thing reminding me of the despairing truth -- that I will have to find a new way to control pain if the new ketamine regime fails. The only thing I know for sure is that it will not be what the doctor there wants me on -- Prialt. I cannot see having that stuff injected into my spine, and you betcha, I am scared to death of the side effects.

[Chief among them being an apparent predilection for suicide.]

Anyway... though I've much that wants to be written -- most of it about the French Open, some of it about the recent USAmerican drone strike that killed Ilyas Kashmiri -- my focus right now is laser lit on my various time pieces.

Because this methadone addict "jumped off" last night at precisely 6:30 PM.

"... rest in the grace of the world..."

The Peace of Wild Things

When despair for the world grows in me

and I wake in the night at the least sound

in fear of what my life and my children's lives may be,

I go and lie down where the wood drake

rests in his beauty on the water, and the great heron feeds.

I come into the peace of wild things

who do not tax their lives with forethought

of grief. I come into the presence of still water.

And I feel above me the day-blind stars

waiting with their light. For a time

I rest in the grace of the world, and am free.

— Wendell Berry

wednesday morning catcam

You can never have too much cat.

Right?

Buddy the Kitten is huge now, and increasingly brave.  Not quite brave enough to confront Marmy Fluffy-Butt, yet, but getting there.  In fact, about the only piece of cat documentary that we lack is a feature length film following their evolving relationship.  Buddy recognizes Marmy's superior position within Marlinspike Hall, but still covets the fluffiness and innate playfulness of her magnificent, waving tail.

He always seems so shocked when reminded that this friendly piece o' hairiness is connected to Marmy the BeAtch -- as you'll see in this little video, when he finds himself perilously close to Her Highness after jumping on the couch.  (Oh my God, she's attached to her tail... Oops!)

Ustjay aysay onay otay ufflesray!

If ever there were a woman not meant to wear ruffles on her tennis clothes, it is Francesca Schiavone.

Master of Contradiction

The grin went ear-to-ear at discovering that ruuscal had used my favorite Stephen Maria Crane poem to illustrate some of his (her?) grand photographic work over at American Idyll.

I saw a man pursuing the horizon;

Round and round they sped.

I was disturbed at this;

I accosted the man.

"It is futile," I said,

"You can never — "

"You lie," he cried,

And ran on.

(PoemHunter.com offers 103 Poems of Stephen Maria Crane for download.)

reefer:::madness

I thought that watching Reefer Madness might enliven this afternoon's bit of methadone withdrawal -- but I haven't had the concentration (o-k-a-y, or mood!) necessary for that to happen. But that doesn't mean that you aren't primed for it!

The details behind my first viewing of this national treasure still boggle my mind.

I was in the hospital with a high fever. High enough that I had been put on a cooling blanket. Reefer Madness popped on the television and as I had been disconnected from the controls, it stayed on. It was a horrible night of chills, sweats, and confusion. Around 9 the next morning, a friend dropped in to see me. He was an engineering grad student at this illustrious university and so I didn't hesitate to enlist his aid -- because despite the reassurances of nurses, I didn't seem to be the least bit cooler from the cooling blanket. He coolly gauged the situation, grasped the cord emanating from the end of the thing, and followed it to the plug's final resting place -- on the floor, by the wall, not the least bit plugged in. So, basically, I had been baking between sheets of plastic all night long, my brain suitably entertained by the delerium of this short flick...

May you enjoy it with some friends, and in better circumstances.




film and notes are courtesy of the Internet Archive (something you MUST check out, iffen ya haven't yet!

Considered THE archetypal sensationalized anti-drug movie, but it's really an exploitation film made to capitalize on the hot taboo subject of marijuana use. Like many exploitation films of the time, "Reefer Madness" tried to make a quick buck off of a forbidden subject while skirting the Motion Picture Production Code of 1930. The Code forbade the portrayal of immoral acts like drug use. (The illegal drug traffic must not be portrayed in such a way as to stimulate curiosity concerning the use of, or traffic in, such drugs; nor shall scenes be approved which show the use of illegal drugs, or their effects, in detail.)


The film toured around the country for many years - often being re-edited and re-titled ("Tell Your Children", "Dope Addict", "Doped Youth", "Love Madness", "The Burning Question"). It was re-discovered in the early 1970s by NORML (National Organization for the Reform of Marijuana Laws) and screened again as an example of the government's demonization of marijuana. NORML may have been confused about the film's sponsorship since one of the film's distributors, Dwain Esper, testified to the Arizona Supreme Court that "Reefer Madness" was not a trashy exploitation film but was actually sponsored by the U.S. Government - a convincing lie, but a lie nonetheless.


That being said, the film is still quick enjoyable since it dramatizes the "violent narcotic's ... soul destroying" effects on unwary teens, and their hedonistic exploits enroute to the bottom.

Also, if you are interested in the rich, uniquely American history of exploitation films, there are two excellent books on the subject:

"Forbidden Fruit - The Golden Age of the Exploitation Film", Felicia Feaster and Bret Wood, Midnight Marquee Press, 1999.

"Bold! Daring! Shocking! True! A History of Exploitation Films, 1919 - 1959" Eric Schaefer, Duke University Press, 1999.

Director: Louis J. Gasnier
Producer: George A. Hirliman
Production Company: G and H Production

Tinny Quavers: Ukulele Music

I was introduced to Israel Kamakawiwo'ole when the television show ER used his "What a Wonderful World/Somewhere Over the Rainbow" medley.  It was a beautiful pairing -- Mark Green's necessary death in Hawaii and Iz's pristine ukulele, his own gasps and sighs -- fitting, both, under a broad blue sky, floating above an ocean.



Madison Avenue was ahead of the game, casting the song in commercials for deodorant, in several soundtracks, including Meet Joe Black, Finding Forrester, 50 First Dates and IMAX: Hubble 3D. As different markets have been exposed to the medley over a disparate length of time, the work has hit high on various charts in a span as large as 17 years.  First released in 1993, it reached number one in Germany last year...

Beyond Iz, I've never gone out of my way to find the latest in ukulele music.  That truly seemed like a one-time thing, that venture into the guitar's subset.

Enter Eddie Vedder.

My introduction to Vedder as a solo artist came, once again, through television and movies -- Deadliest Catch, Into the Wild and the anthem "Rise."

And there it was, that damned uke.  Unlike a good many instruments, it gives off an aura of strict self-sufficiency -- and that is it's incomplete paradox.  It needs a counterpoint of voice, something to temper its tinny quavers.  Voice and instrument together?  Perfected melancholy, and those diminutive strings that had threatened to go off on their own, brought back in an homage to dispossession, to life on an edge.



I'd never have thought that a ukulele -- played beautifully -- could speak so perfectly to something within, some archetype that sleeps until teased, its strings strummed almost angrily or picked and plucked in a near simper.  It's the perfect vessel for folklore, and for the dispossessed. (Ua Mau ke Ea o ka ‘Aina i ka Pono, indeed...)

Based on I-don't-know-what, the uke has been classified in my sad head as a trite sound, as if it were a toy instead of an actual instrument requiring great skill.  It's one of those "idées reçues" for which I'd love to find the genesis.

Tiny Tim?  Maybe, though I was actually a fan -- a fan hoping to irritate the 'rents, sure, but still, a fan.  He was way more than "Tiptoe thru' the tulips." **

I woke up feeling mighty ill this morning, but musically inclined.  Nothing that I put my hands on fit the bill, however, and I was close to settling for local radio.  My detoxifying brain nixed that notion and I found myself on the NPR website, combing through entries to "First Listen."  

There it was:

First Listen: Eddie Vedder, 'Ukulele Songs'

May 25, 2011

For his second full-length solo album, Eddie Vedder has taken up one of the most useful creative tools available: limitation. It's embodied in a little finger-strummed thing that the Pearl Jam singer picked up during a beer run in Hawaii nearly 15 years ago, an instrument whose limits he never pushes, and which ends up refining and expanding his own range. Ukulele Songs isn't a novelty record; it's a statement of truth. Made calm and open by the ukulele's intimacy, Vedder sounds like someone getting out of his own way and discovering what really matters within his art.

What matters musically, as he's been saying lately in interviews, is melody. The baritone growl that not quite singlehandedly defined millennial American rock transforms here into the lullaby singer's murmur and a romancer's croon. Pearl Jam is a big, noisy band, and in many of its best songs, Vedder has ridden its big waves hard: He's helped many a fan safely unleash un-pretty emotions. Here, though, he asks the listener to pull back with him and pay attention to the tiptoe of his voice as he descends a scale, or the sweetness of slipping into falsetto.

Vedder's song selections are culled from more than a decade's worth of writing he's done on the uke. A Pearl Jam song, the driving "Can't Keep," opens the set and seems like a form of reassurance — Vedder hasn't gone totally soft, Ten Club members! But the craving for escape that the song expresses here seems like a bit of a fake-out. Everywhere else, from tearjerkers like "Sleeping By Myself" and "Broken Heart" to the more hopeful likes of "Without You" to the vintage crooners' favorites that Vedder covers, Ukulele Songs is about staying still enough to feel something calmly and clearly... READ THE REST *HERE*

You can listen to it in its entirety at the NPR website -- but when it is released for sale on May 31, remember to support the artist by buying/downloading it -- perhaps HERE.

I've had my musical fix for the day.  Uh-oh, I'm lapsing into more drug jargon... Mwa ha ha!

Seriously, though, I cannot see that there are any other musical contenders beating down my door to participate in the Ukulele Folk/Rock Division. 

How goes the methadone taper?  Famously, I suppose.  I am holding at 15 mg for a few more days, or for good, I haven't decided.  What I have done, I have done much too rapidly and my body and mind are determined that I should suffer for it.  Last night, around 3 AM, the urge to give up almost won -- due to my version of Restless Legs Syndrome (also known as Wittmaack–Ekbom syndrome).  Methadone doesn't bear the entire burden of blame here, as I inherited an affinity for "jumpy legs" from dear old Dad.  I can still remember him coming home from a mission, dead tired, falling into bed, only to be betrayed by the dread spasms and misfires in his legs.

Wikipedia opines that "[o]pioid detoxification has been associated with provocation of RLS-like symptoms during withdrawal," but what does Wikipedia know?  I also happen to have almost every pre-disposing malady it lists.  Still, the timing is kind of suggestive.  Oh, all right...

Anyway, I did what any person would do in that situation -- I dug up a bottle of trazodone and took it. 

Oh, all right...  I took a whopping 150 mg -- not the whole darned bottle -- which allowed for some sleep until pain woke me at 5 AM.  Got up, baked scones, in the process dumping half a bag of flour on myself and the kitchen floor.  Mopped, washed up, changed clothes, and slept wonderfully from 9 to 10:30 AM, at which time I began the aforementioned search for music, and began this post.

When next I attempt to sleep? I expect a hell of a soundtrack!




**  I can't resist.  This is one of my favorite covers by Tiny Tim (Herbert Khaury):

Changing the Channel: Court TV and Two Abstracts

I've never been a Court TV junky -- mostly because, you know, I've been busy being some other kind of junky -- Mwa ha ha ha!  Sorry, Beloved Readers, that's Street Drug Humor, something at which I am fantastically adept but have kept hidden as an attribute.  Now, though, I've decided not to hide my light under a basket. A bushel.  A bushel basket. Or whatever.

No, I am not suffering from Hinky Methadone Withdrawal.  What I am suffering from is this twit of a woman, this Casey Anthony person upon whom we are wasting such incredible resources of money, time, and emotion.  Yes, my television is tuned to her first-degree murder trial in Florida, where she is accused of having killed her two year old daughter back in 2008.   

Change the channel, you say?

Oh.  Right!

If I can redirect the miscued energy of a kitten, surely I can train myself to change the television channel -- even {gasp} turn the machine off.  Let's do that, then, and see what happens.

Why, look!  Here are some CRPS updates that I've failed to pass on.  Oh, and there is a Pink Elephant hanging from the ceiling fan!  (Just let me know when you've had enough Hinky Methadone Withdrawal humor.  Why are the lights blinking?)

This first research paper has a very specific target audience -- so, attention all orthopods!

The use of beta-tricalcium phosphate bone graft substitute in dorsally plated, comminuted distal radius fractures.Journal of Orthopaedic Surgery and Research

Michael G Jakubietz , Joerg G Gruenert and Rafael G Jakubietz
2011, 6:24
doi:10.1186/1749-799X-6-24


Published:  22 May 2011


Abstract (provisional)

Background:  Intraarticular distal radius fractures can be treated with many methods. While internal fixation with angle stable implants has become increasingly popular, the use of bone graft substitutes has also been recommended to address comminution zones and thus increase stability. Whether a combination of both methods will improve clinical outcomes was the purpose of the study


Methods:  The study was thus conducted as a prospective randomized clinical trial. 39 patients with unilateral, intraarticular fractures of the distal radius were included and randomized to 2 groups, one being treated with internal fixation only, while the second group received an additional bone graft substitute.


Results:  There was no statistical significance between both groups in functional and radiological results. The occurrence of complications did also not show statistical significance.


Conclusions:  No advantage of additional granular bone graft substitutes could be seen in this study. Granular bone graft substitutes do not seem to provide extra stability if dorsal angle stable implants are used. Dorsal plates have considerable complication rates such as extensor tendon ruptures and development of CRPS.

I know, I know -- where did that last line of the conclusion come from?  Is it really there or am I imagining things again?  Like I said, this has a definite target -- orthopedic surgeons -- and, well, I hope it doesn't keep any of them up at night!

Mwa ha ha ha!

Ahem.

Okay, on to something more "relatable," though not less specialized -- fixed dystonia in CRPS.  Just a few observations:  Classical dystonia is mobile;  Fixed dystonia is usually classified as part of functional movement disorders and is often labelled a contracture -- (though I think a better descriptor is fixed flexion postures);  All of that is code for "psychogenic."  Most studies will make quick mention that fixed dystonia happens mostly in females, many of whom suffer from dissociative and affective disorders. 

Sigh.

(Please note that I am sighing as I look down at my twisted and distorted foot... as I recall the initial days of CRPS, when my left hand looked like the infamous psychogenic claw!  I'm also flashing on some really cool concerts from back in the day, but that could be the DTs.  Mwa ha ha!)

So... once again, if you're a CRPS patient experiencing dystonia, be sure to see someone who is not going to automatically categorize you as a nut.  The authors of the study below are searching for an explanation beyond the easy and lazy classification of "functional," and posit that the neurotransmitters used by interneurons are misfiring or dysfunctional (he he).  If you are like me, you might want to start with this quick intro to interneurons!

Fixed Dystonia in Complex Regional Pain Syndrome: a Descriptive and Computational Modeling Approach

Alexander G. Munts, Winfred Mugge, Thomas S. Meurs, Alfred C. Schouten, Johan Marinus, G. LORIMER Moseley, Frans C.T. van der Helm and Jacobus J. van Hilten

BMC Neurology 2011, 11:53
doi:10.1186/1471-2377-11-53

Published: 24 May 2011

Abstract (provisional)

Background: Complex regional pain syndrome (CRPS) may occur after trauma, usually to one limb, and is characterized by pain and disturbed blood flow, temperature regulation and motor control. Approximately 25% of cases develop fixed dystonia. Involvement of dysfunctional GABAergic interneurons has been suggested, however the mechanisms that underpin fixed dystonia are still unknown. We hypothesized that dystonia could be the result of aberrant proprioceptive reflex strengths of position, velocity or force feedback.

Methods: We systematically characterized the pattern of dystonia in 85 CRPS-patients with dystonia according to the posture held at each joint of the affected limb. We compared the patterns with a neuromuscular computer model simulating aberrations of proprioceptive reflexes. The computer model consists of an antagonistic muscle pair with explicit contributions of the musculotendinous system and reflex pathways originating from muscle spindles and Golgi tendon organs, with time delays reflective of neural latencies. Three scenarios were simulated with the model: (i) increased reflex sensitivity (increased sensitivity of the agonistic and antagonistic reflex loops); (ii) imbalanced reflex sensitivity (increased sensitivity of the agonistic reflex loop); (iii) imbalanced reflex offset (an offset to the reflex output of the agonistic proprioceptors).

Results: For the arm, fixed postures were present in 123 arms of 77 patients. The dominant pattern involved flexion of the fingers (116/123), the wrists (41/123) and elbows (38/123). For the leg, fixed postures were present in 114 legs of 77 patients. The dominant pattern was plantar flexion of the toes (55/114 legs), plantar flexion and inversion of the ankle (73/114) and flexion of the knee (55/114). Only the computer simulations of imbalanced reflex sensitivity to muscle force from Golgi tendon organs caused patterns that closely resembled the observed patient characteristics. In parallel experiments using robot manipulators we have shown that patients with dystonia were less able to adapt their force feedback strength.

Conclusions: Findings derived from a neuromuscular model suggest that aberrant force feedback regulation from Golgi tendon organs involving an inhibitory interneuron may underpin the typical fixed flexion postures in CRPS patients with dystonia.

In other breaking news, "Ketamine induced selective impairments in timing..."

Put that in the No Kidding File. 

Well, folks, I'd better get back to my soon-to-be "Done"-less life.  I do hope you know I'm just joshing around about the difficulties of tapering off of methadone.  I am NOT having a hard time (yet) or experiencing anything I cannot deal with.  Just don't take away my ibuprofen.

kind, humble, funny: spectrumom

In the course of reading commentary over at another blog, I came across an interesting one and followed the author back to her place -- this blogosphere is awash with serendipitous linkings.  We're gifted by the stylizations of the juxtaposed!

I read all of spectrumom: Getting all Buddhist and whatnot about autism.  That wasn't hard.  There are only nine posts.

On July 9, 2010, she opens her blog this way:

We have 3 kids: Sam, Nathan and Isaac.


Sam was diagnosed when he was 2year, 7mo with autism. Nathan was born 3 weeks later.


It was a stressful time.


As he grew, it became obvious that Nathan was on spectrum too and I was devastated. I had always wanted a large family and it seemed all I could obsess on was not having more children. Well, in addition to trying to fix what was wrong with my kids, it was all I could obsess on. Eventually, after 4 years, we did decide to have another. At the advanced age of 38, I had Isaac, now 4. And he is neurotypical, the outlyer in our family. The weirdo. Or the normal kid in a family of weirdos, take your pick.

Maybe because her time and spirit are likely... distilled, her prose is very lean, very clean.  Or perhaps she's a practiced writer.  Whatever.  Do I really need to justify the fact that I like her writing, and like it very much?

I won't claim that, through it, I understand autism, or people with autism, or parents with children with autism.  Thank goodness, she hasn't been taxed with my education in her reality.  But she is kind, humble, and funny -- so I am allowed what I can deal with.




Malpensa Airport, Milan 2008


I particularly like "Airport Brain."  She does a superb job of facilitating between worlds without condescending to any of them.  Give it a read, starting below and then clicking your way over to spectrumom. 

Have you ever been in an airport, or another busy place, but you're by yourself? So your brain decides to separate itself from it's surroundings. You feel separated from those around and there is a hum in your head. It is just an odd feeling. It's called depersonalization by the psych people. And this kind is very mild as opposed to the severe end associated with severe anxiety disorders and PTSD. But it happens to me sometimes when I'm shopping by myself or at a huge convention by myself. I can hear and talk to people and look pretty normal, but I just feel totally separated. Maybe it's just me being weird, but work with me on this idea.


Now imagine you are in an airport in a foreign country and there is the hum of Chinese or an Indian dialect, not an American voice to be heard. Your brain spaces out more as it seeks the familiarity of your thoughts. [CLICK HERE TO CONTINUE]

14 Minutes

image courtesy of addiction search

I'm having great dreams.  My last flirtation with sleep had me at the White House in tennis togs, running up and down a lovely, wide, red-carpeted staircase, happy as a clam.  The President and First Lady were scheduled to renew their wedding vows, and I was serving, of course, as a bridesmaid (a word and concept that makes me cringe).  People were reputed to be lined up outside, dressed to the nines, and upset that the wedding party had spent the afternoon on the courts instead of primping -- we had delayed the festivities when our mixed doubles required a third set.  So President Obama made a charming statement, promising that we'd all be downstairs and completely suitable within 14 minutes.  He repeats the 14 minute reference several times and it seems to be an inside joke, as the press and all the gathered beautiful people are snickering.

What can I say?  It was a dream.  14 minutes.  *These* are the dream details, Dear Sigmund, that I'd love to understand!

Clearly, there is nothing profound going on between the ears.  My brain is simply a little less inebriated than usual:  About ten days ago, I decided to try and be off of methadone and Percocet before the next Ketamine treatments.  If we are going to try and approximate the protocol used by Dr. Schwartzman, and if that's part of what he recommends, well, that's that. 

From a beginning dosage of 40 mg a day, I am down to 15 mg of methadone.  From a usual four pills a day of Percocet, I am down to three. 

I may need to pause here for a few more days, though, and I'm thinking it looks "iffy" that I will make the deadline of "no opiates" by June 13.  Why?  Well, most of all, methadone has a long half life and it surely won't be completely out of my system. 

And as for Percocet -- it helps too much for me to imagine not having to take it.  Judicious use of Percocet and ibuprofen has saved many a day.

I will do what I can do.  Any reduction is good.

In an effort to make it easier, and to control symptoms while attempting this crazy thang, I'm relying more than usual on non-addictive adjunct meds -- amitriptyline, baclofen, Cymbalta. Mostly, though, I am just trying to see the "absolute value" of taking as little narcotics as possible.  A clearer head, a happier gut, and maybe, given the infamous rebound potential of these drugs, less of a certain type of pain.

I can report that I'm not having as much of the burning so much a defining element of neuropathic pain -- but that might be due to the higher dose of amitriptyline (I hate amitriptyline and won't maintain this higher dose much longer).  The rest of my pain is unchanged and if you forced me to pick a number on the Pain Scale, it would be an eight, which is about as high as I ever will claim. 

Let's put it this way:  At my current level of pain, it sometimes takes me up to 10 or 15 minutes to just get out of the wheelchair, and I am likely to be crying by the time I am on my feet.  This morning I had to go without coffee because my shoulders, arms, and hands couldn't tolerate the weight of water.  I'm not suffering any delusions about having a pain free life.

There are whole communities on the internet of people trying to stop taking methadone, and after perusing the goings-on within them, I got really scared.  Weeks and months, even, of withdrawal?  Going through a literal hell? (Also, shouldn't I be referencing "percs" and "dones" so as to better perfect my Addict Persona?)

Among these conversants, though, there are very few who are taking methadone to treat pain.  Most are part of a methadone maintenance therapy that enables them to resist the cravings for other drugs, usually heroin.  It really is awful to contemplate -- to be hooked on heroin, then to be put on another drug to which one invariably becomes dependant?  I get the argument -- it's cheap, it's controlled, it doesn't require a life of crime or victimhood to sustain... Still.  How awful.  

The constant theme is withdrawal, and at what point to consider "jumping off" and going cold turkey.  It is generally agreed that it's nuts to do it above 30 milligrams.  Obviously, the lower the dose at which one jumps off, the better. (And then there is the constant motif of suboxone!) If I had more time, I'd do it all by taper, but I will have to choose a jump-off dose as well, with the expectation of about a week of withdrawal symptoms, probably beginning on the fourth or fifth day.

In other words -- any day now.  I have June 1 in mind. It would be lovely to be at a comfortable 10 mg a day in the next week.  We'll see.  Again, if I cannot do it, I won't see that as a failure, but it will mean going into the upcoming Ketamine treatments under less than ideal circumstances.

For me, this is a fairly straightforward case of diminishing returns.  Higher doses of pain medications that are not terribly effective anyway make no sense.  Finding the lowest, most effective dose seems logical, and along with that, testing the validity of that dose from time to time (I believe in drug holidays).

My poor brain is trying hard to keep up.

The increased sleep is helping.  Who would not enjoy mixed doubles with Michelle and Barack Obama?  Finally, too, I get to wear a bridesmaid dress that is not a gauzy, goopy pastel but instead is a copper-colored raw silk with a clean, clean line.

And I'll figure that 14 minutes reference out one day...

To Blog Visitor From Spain (guardamar del segura)

I could not find information specific to DSR/SDRC (RSD/CRPS).  You might find what you need here:

Valencia University General Hospital
Multidisciplinary Pain Management Department
Valencia, Spain
vilanueva_vic@gva.es

You might also consider calling/writing these doctors for more information:

Dr. José De Andrés
Associate Professor of Anesthesia,
Valencia University Medical School
Chairman, Department of Anesthesiology and Critical Care
Director of the Multidisciplinary Pain Management Center
Valencia University General Hospital
Tres Cruces s/n, 46014-Valencia. Spain

Prof. Carmen Gomar
Professor of Anesthesia,
Barcelona University Medical School
Department of Anesthesiology and Reanimation
Hospital Clinic i Provincial
Villarroel 170, 08036-Barcelona. Spain

FAQ For My Students: The Rapture

Brother-Unit Grader Boob forwarded this recent department-approved addendum to his syllabus for English Comp classes at Good Old University, where he quietly and courageously attacks the lethargy and heightened sense of entitlement afflicting today's youth. He must have begun the first summer session, because just a few weeks back he was getting misty-eyed over the end of spring semester:

Howdy--
Just wanted to drop you a line as the grading/cursing here comes near an end.
Have had one student say that I "fucked [her]" and that "[she didn't] care one bit for this shitty class." My response: a bland "Have a nice summer."
I just wished I'd said it sarcastically!
Where's Swift when you need him?
Mucho amore to all.
Grader Boob

From UC-Berkeley's Landscape Heritage Plan
Sather Gate, Wheeler Hall, and the Campanile beyond (ca. 1945). Note that at this time, the Gate
defined the campus entrance, and the adjacent Sproul Plaza was a city block.

FAQ for my Students: The Rapture
Q: With the rapture coming, should I bother working on my final paper?
A: Yes. The odds are you will not be judged worthy of ascent to heaven, in which case your grades will still be a basis of judgment for rewards in this earthly sphere.
Q: What if my instructor is raptured?
A: None of our instructors bear much chance of being judged worthy. However, on the off chance your instructor is chosen, an army of unemployed secular Marxists is waiting to take his/her place.
Q: If my mother/father/grandfather/grandmother/favorite aunt/etc. is chosen, will I be excused from the final so that I may mourn his/her loss?
A: No. They have not died, but been granted eternal life, thus this does not count as a case of a death in the family.
Q: If my instructor is not raptured, is he really fit to judge me?
A: Yes, seeing as you were not raptured, you are still subject to the earthly judgment of the unsaved. If/when you are redeemed, a change of grade form will be automatically processed by heavenly authorities if they decide your grade was unfairly given by one of the damned.
Q: If my computer crashes and my printer breaks and there is no email on account of the rapture, will I be able to get an extension on the paper?
A: Everyone in tech and IT departments is of Satan’s party, so the internet, your computer, and your printer should continue to work the way they always have: sporadically.
Q: How will the rapture affect your curving, particularly if raptured students are exempt from final tests/papers?
A: Final grades are not curved, but students who are taken up in the rapture will be given incompletes, just in case.

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."