Kate's MRI [with update]

Holly McRae's daughter Kate has an MRI scheduled for Tuesday.  Tomorrow.

Kate has what her mother once described as a "very malignant, aggressive brain tumor called a supratentorial primitive neuroectodermal tumor or sPNET."   She's undergone every treatment available.  Her parents and doctors have culled through protocols, and they know they are navigating uncharted waters now that there are new tumor spots.

Still, first grade is just around the corner, and life goes on adding sweet to the bitter.

Theirs is a Christ-centered home and family -- Holly's husband, Aaron, is a pastor and she is clearly faith-driven.  They believe that God can and will cure their daughter.

Every MRI has become critically important, sometimes for all that the scan does not show as much as for what it illuminates.  Holly and Aaron have always been wonderfully explicit in their requests for prayers -- a characteristic of real believers.  (I've been advised many times that God can handle my own pitiful minutiae --from disintegrating thumbnails to an overflowing appreciation for the awesome GirlPower of the FIFA World Cup finalists...)

I've learned that God is tapping me on the shoulder every time one of these real believer types stands in my path and refuses to get out of the way.  (They're incorrigible.)  I would translate that annoying tap::tap::tap into words but this is a G-rated blog, so just imagine God mildly cursing.  I don't mean plagues in Old Testament Egypt or Eve's subjugation, although I suspect that while God has authored a good many such curses, there is no intent to stifle the human response to fight, argue, and revolt.  Indeed, sometimes the divine hand fans those flames. 

Oh, hush.  Yes, I had another "D'oh" moment and didn't delete it. 

Here is the beginning of Holly McRae's latest journal entry over at Caring Bridge.  If you are new to Kate's story, you'll find the two years of journaling insightful, challenging, and -- definitely -- inspiring.  You will pray for Kate, her parents, her brother Will and her sister Olivia;  You will come to care, and very much.

In the post prior to this one, Holly wrote:

We have many prayer requests. Many. So tonight I will name a few pressing ones.
~that the original tumor area on the MRI will show NO change (this is hugely important)
~that the two new tumors would be gone on the upcoming MRI
~that Kate's abdominal pain would subside as she has been barely eating
~that her energy would increase in the next few weeks, so she would be able to start first grade
~that God would miraculously touch Kate's body, eradicate the cancer, heal the damaged areas of her brain, protect her vital structures that are at risk and preserve her vivacious spirit.

Whether you are a seasoned Prayer Warrior, or, like me, a clueless recruit in Intercessionary Boot Camp, that should keep you busy.

MRI on Tuesday....


We always tend to get reflective right before a major MRI. I clean and do my usual organizing. I wonder if it comes from the fact that the day Kate was initially diagnosed I left things in chaos at home. Bowls of cereal half eaten, laundry everywhere, we just dropped everything to go for the CT scan. I didn't step foot in our house again for almost 2 months. Now I always feel the impending desire to have everything in order, just in case we wouldn't come home. I truly don't believe that will be the case, but wonder if experience has dictated these new instincts in me.


The other day we were driving somewhere, it was probably 130 degrees out (slight exaggeration, but only slight) and the kids were giggling about something in the back. I quietly asked Aaron if he could imagine life without the impending thoughts of cancer, without the constant thought if Kate would be with us the following year, without death being a very real and talked about topic. Some are healthy changes. Healthy changes amidst a very gruesome disease. And yet we are still mourning other life changes. Bittersweet. Only occasionally do I let myself even wonder what life would have been like. What sweet Kate's life would be like had cancer never come knocking. I can't let myself stay there. It did happen, and life is different. It will always be different now. I just pray different will become sweeter over the days ahead. Less of the bitter, more of the sweet.


Kate's hair is starting to grow back some. It's interesting so far. Darker in spots. Thicker in others. We still can't tell if it will all come back yet. I get nervous for her some days. The thought of potentially having some permanent hair loss at the tender age of 7. It would be just one more battle to face. I love however that Kate rarely cares, of course she is sure her hair will come back at some point. And of course there is the occasional day that someone stares too long, or turns around to take a second glance, causing her to rethink letting others see beneath her hat. And then of course the fierce mother instinct comes out and my eyes say a million words to them that my mouth cannot. And yet, the other day she offhandedly said she wants to work on being more brave. Where she can take off her hat more readily in public around people she doesn't know. And I tell her she is incredibly brave already. She is forgiving of peoples unashamed stares and rarely complains about not having hair, when most are never thankful for the simple fact that they do have hair. I love that she has a new found confidence in the face of a physically altering illness. That speaks volumes. She is crazy beautiful anyways. [READ THE REST HERE]

That's for sure.

TUESDAY UPDATE:  Holly writes (and Aaron tweets) --

"We have very few details at this time but simply heard there has been 'no change' since last scan! Everything is stable! We praise God for this and are incredibly thankful for every single prayer offered on Kate's behalf."



A YEAR AGO TODAY: One Roseville Rozane Morning Glory Vase, Shattered

On this date last year, the denizens * of Marlinspike Hall played host to a not-so-dashing duo of home invaders. Whether mere thieves or professional hitmen on the run from Interpol and the Orange County Sherriff's Department, their identity and true purpose remain a mystery.


The Castafiore thinks she knows. They were after her, of course.
But she doesn't know, not really.


The Manor incident was the second home invasion to which I've been witness. There was no theft, just substantial breakage (of things, of confidence). The first time around, some odd 20 years ago, there was theft, but not of my stuff, just of Fred's stuff, as my sole valuable was too large to load into a pillowcase. Fred lost several Leicas, most of his Nikons, and a mountain bike -- a handy getaway vehicle. My pen and ink triptych entitled "Quand Salomé danse" in a specially commissioned antique gilt frame? Not taken.  Not damaged.


Go figure!


Anyway -- I will be on high alert later today, especially when Fred tootles off to congregate with the Militant Lesbian Existential Feminists, just in case those Break-In Bozo Bastards are anniversary freaks. The Indentured Domestic Staff has the day off. They've been working very hard in preparation for the opening of ManorFest next weekend. La Bonne et Belle Bianca Castafiore has two performances of Faust, one a matinee, so she will not be in residence either. It looks like it's me and the Feline Remnant against the Sentimental Evildoers.


* And mavens, don't forget the mavens!

*******************************************************************************

Just minutes before Universal Worship Time, somewhere around 10:56 AM, without even the benefit of fortifying coffee, poor Fred scratched off down the unpaved country road, late for Sunday morning services with the Militant Existential Lesbian Feminists.

Scratching off in a Honda is an accomplishment, you know!

That left me all alone in Marlinspike Hall -- except for a Slumbering Castafiore. La Bonne et Belle Bianca is worn to a frazzle with all the rehearsing and costume fittings involved in the new mounting of Gounod's Faust. [All I know is that the new set designs approximate some sort of New Wave, 1980s nod to Miami Vice.]

It is Manor Tradition that domestics have [the daylight hours of] every third Sunday off, barring the presence of The Captain, of any of the Haddock Clan, which dictates full staffing at all times -- and usually, we have to bolster the blue-blood-to-hireling ratio by employing local temps. Fortunately, there is a robust Domestics 'R Us franchise a few towns over, in East Tête de Hergé (très décédé, d'ailleurs).

Anyway, I was essentially alone. Just me, the Manor Petting Zoo denizens, a small herd of Miniature Buffalo -- and the Three Felines.

Of course, being inside manor walls, with the drawbridge up, it seemed like it was just me and the cats.

{cough}

I had just decided to begin the intricate process of settling down up in the Computer Turret * for some juicy DM-action with an internet buddy when the loud sound of glass breaking destroyed Sunday's silence.

We don't have windows in the traditional sense, of course. Not glass, is what I mean. No glazier in his right mind would undertake to install panes of actual glass in any of our Fresh Air Access Modules. We did try, once, putting in a dual-paned insulated unit in one of the more regular-sized FAAMs in the Spinet Chamber -- 78-3/5″ wide and 121-1/2″ tall (never mind the depth -- we had to put in a sash and frame assembly to somewhat normalize the process -- that was tricky, let me tell you!) Darned if we didn't spend all our time trying to keep our one and only window defogged enough to see out. You would think the Spinet Collection, which includes three attributed to Hieronymus de Zentis, himself, would show signs of harm from all the moisture but oddly enough, these 370-year-old, poor-man, stripped-down harpsichords have held up better than the finer instruments in the Haddock Clan's holdings. They're a big hit during ManorFest!

You are probably wayyyyy ahead of me in this narrative. I guess that I tend to ramble, inchoate, à la H. P. Lovecraft, under duress.

It was not mere glass that broke, unfortunately, but rather a Roseville vase -- from the (Rozane) Morning Glory Collection. There are hundreds of such things that decorate The Manor, but I was particularly fond of this relatively unknown American Cousin.

Yes, we had an intruder, a particularly young and clumsy one, possibly still in training (I imagine there is some sort of apprenticeship for these sorts of métiers). He managed to traipse across the property unheeded, swim the moat (we found his carefully rolled and stored wet suit), and stroll through an entire wing of Marlinspike Hall before meeting another soul, and then, only because he knocked over that beautiful vase from Ohio.

Listen to the names of all the Roseville lines from the same period of production -- 1930 to 1939; It's pure poetry, buckeye, conker, ohioan:

Baneda, Blackberry, Bleeding
Heart, Cherry Blossom, Clemana, Crystal

Green, Dawn!

Earlam, Falline, Ferella,
Fuchsia, Iris, Ivory Two,
Ixia, Jonquil, Laurel.

Luffa, Moderne, Monticello,
Morning Glory,
Moss!

Orian, Peony, Pinecone,

Poppy,
and Primrose.

Russco, Sunflower, Teasel, Thorn
Apple, Topeo, Tourmaline...

Velmoss and Velmoss Two:

Windsor,
Wisteria.

I used this chant to calm myself, once our intrepid, young (and clumsy) intruder had fled.

Once I tracked down a fully-charged phone, I called the local version of 911. In Europe, the emergency phone number is often 112. Here, in our very unique area of Tête de Hergé, it often suffices to call up Tante Louise -- who is a story in and of herself. I gave a good description of the guy, proud of myself for having noticed his missing left pinky and the tattoo of a wall-eyed parrot on his right forearm. Still, I was frustrated at my inability to estimate height -- something definitely compromised by the vantage point of a wheelchair.

I also reached Fred, via The Church Lady, The Mousse, the only Straight Female in the Militant Existential Lesbian Feminist Congregation, managing to stifle a snide remark when she LOUDLY whispered, "Fred, oh yes, Retired Educator, he's right here... next to me..."

Having made the necessary calls, I went about the business of making sure La Bonne et Belle Bianca and The Felines were all safe and sound. The Castafiore cursed at me in French and Italian, not comprehending my protestations of an intruder in The Manor, and the cats all gamely meowed.

I found no further signs of damage, and noticing nothing missing, I started to relax. But as I headed into the closest kitchen to start some coffee brewing, the unmistakeable dulcet tones of someone banging on an exterior door rang out. Rang out, insistently.

Unless they were camped out down the road at the Cistercian's place -- our equivalent, I guess, of cops at a donut shop -- there's no way that could have been the police, thought I.

There's no such thing as a peephole when you are dealing with massive medieval doors, especially when they are made of bronze and cast as single units -- not just bronze panels decorated and secured to a flimsy wooden frame, no! Scholars generally divide the History of Medieval Bronze Doors into those made in Constantinople and those made in Italy. Symeon of Syria is presumed to be the maker of the doors in question, as he is famous for adding inlays of silver to his decorated story-panels depicting Lives of the Saints.

These were some heavy, dense doors, is what I am trying to say. I did my best to decipher the muffled responses to my shouted queries, but it was hopeless. Thinking that maybe some Festival Hounds were under the impression that we were open for ManorFest, I heaved open the doors.

There stood Intrepid Young Intruder, even more dirty, sweaty, and panicked-looking than the last time I saw him. Next to him was an older man, neat as a pin and grinning a leering grin my way. "Is Hassan home, Decrepit Lady in a Wheelchair, whose neck I could snap, like *that*?" he asked.

Okay, all he really said was: Is. Hassan. Home. Lady.
All the while, Intrepid Young Intruder was on the verge of Spontaneous Combustion, his four digit-hand crossed over his body, gripping his inked arm so tightly his four fingers blanched white.

"The Police are on the way," was the only thing I could think to say. And I said it as I was swinging those damned doors closed, as my heart occupied my throat, as my life flashed before my eyes, and as annoying worry about the well-being of the Somnolent Diva and the Manor animals asserted itself in my forebrain.

What I would have given for a normal house window to peer out of...

And... how could it be that Leering Old Guy was bone dry and cool as a cucumber if the drawbridge was up? (and the submarine disabled! I forgot about the submarine.)

I kept yelling optimistic yells about the police, the cops, the fuzz -- and how I thought I heard 'em coming, how I had 'em on the phone, how amazingly prompt they always were to the inhabitants of Marlinspike Hall.

I might have implied, at one point, that the Haddocks *owned* the police.

Fred made it to my side in under 20 minutes. He saw no sign of the pair, though he did find Tools of the Burglar Trade and an empty knapsack near where Intrepid Young Intruder had stashed his wetsuit.

There was a hammer by Symeon of Syria's bronze doors.

The Tête de Hergé (très décédé, d'ailleurs) Metro Police? Sixty-seven minutes. After two phone calls. Sixty-seven minutes.

It took us hours to find Our Little Idiot, Dobby -- he finally issued a small squeak that led us to a cherry wardrobe in a rarely-used bedroom off of Bianca's Suite in the West Wing. He had carefully pried the door open, using the floral frieze molding for good paw grip.

It's almost evening, now, and his pupils are still shot wide in terror, poor thing.

So that has been my Strange Sunday, and really I was doing quite well, having made a police report, and served tea to The Detective. I listened, shaking my head, trying to laugh, as Fred swore that I must assent to having a gun. I calmed a hysterical Castafiore who is now convinced that the two men were obviously after *her* and that she had only barely eluded their grasp.

Yes, I was doing quite well.

Until The Detective licked his lips, casually crossed his legs, and said:

"So... why do you think they came back, hmm?"






*We get more questions about The Computer Turret than about any other architectural feature of the architectural conundrum that is The Manor:

The only way in or out, up or down, the pesky turret is via a thick rope ladder, dyed caution yellow, that extends down (but mostly sideways) out to the Manor Stables -- a remarkable outbuilding that is an alarming replica, as we pointed out in our last post, of the Knoppenburg Manor Stables. The proper term today is "agricultural building." You won't catch me calling it a barn if there are any prying ears about. Of course, the last outsider who dropped by was The Technician Overlord of Our Telecommunications Bundle, which he so wisely decided was best centered in the Hobby Room at the top of the Turret Tower. We had concocted a cover story about the rope bridge ("It's more a bridge than a ladder," Fred just said), which consists of the baldfaced lie that we are a new off season venue for those Cirque du Soleil performers who are fresh out of rehab. So the hefty diameter of that hemp monster, see, is easily explained away as necessary gear for these poor, troubled acrobats.

I'm usually not subject to such heights of embarrassment (heights, and, lately, riches) but I just don't want anyone to think that I have to zig zag my way from one Manor Wing to another, make it to the Grand Ballroom, out the entrance, patterned after Brunelleschi's bronze baptistery doors, over the drawbridge (Provided it is down! Men!), across the moat, down the lane, over the hedge, into the damned agricultural outbuilding, up the custom wheelchair ramp into the hayloft, and then, lickety-split, go hand-over-fist on the rope bridge for a good half mile... all just to get my email.

The Nod: Affirming the Legitimacy of Libya's TNC

Excellent move:

ISTANBUL (AP) — U.S. Secretary of State Hillary Rodham Clinton says the Obama administration has decided to formally recognize Libya's main opposition group as the country's legitimate government. The move gives foes of Libyan leader Moammar Gadhafi a major financial and credibility boost.



Clinton announced Friday that Washington accepts the Transitional National Council as the legitimate governing authority of the Libyan people. Diplomatic recognition of the council means that the U.S. will be able to fund the opposition with some of the more than $30 billion in Gahdafi-regime assets that are frozen in American banks.

Just perusing the initial reports from various news outlets, it looks like most of the other 32 nation members of the "Contact Group on Libya" have also recognized the legitimacy of the TNC. 
 

Excellent decision...

Stasis

Well, it looks like I may keep blogging after all.  Your spontaneous cheers of approval warm the cockles of my heart.  Thank you so much (my best Brenda Leigh Johnson impression).

It was an afternoon of misadventures, my favorite kind of afternoon.  I do feel awful, though, for dragging others through these fun times, and by "others," I usually mean Fred.

I had not been to my pain management doctor's office since March -- at which time two things happened:  the PA I had been seeing there quit, and I began the Great Subanesthetic Ketamine Adventure over at the Hospital for Catastrophes.  Each one of these two things engendered other things until I was practically tripping over all that accumulated quiddity.

The PA leaving caused me to question the quality of care I'd been receiving.  It sounds odd, I am sure, but Allison the PA was light years ahead of the doctor of record, in terms of staying abreast of CRPS research and treatment opportunities.  He had begun to depress me.  I would show up every month with questions from what I'd been reading and about what others had told me.  I swear that I was not obnoxious about it, and never dominated his time.  Fred used to time him from the moment of entry to the second he grabbed the door knob in retreat -- and this doctor rarely stayed in the exam room longer than 3 minutes. 

At some point, Dr. PainDood decided that I did not understand my situation.  He began taking my gesticulating hands in his big old dry ones, looking me soulfully in the eye, and saying:  "Prof-de-Rien, there are no more treatments to try... There is nothing that is going to help... We can only manage the pain to the best of our ability."

He's a very handsome man, and he would pause, head held at a flattering angle, long arms and finely tapered fingers extended -- Dr. PainDood loves handshakes, handholding, all things hand.

[I suppose that is preferable to, say, the kisses I used to field from a certain rheumatologist, and it's definitely superior to the tears that always flow from the sweet, sensitive eyes of my neurologist, The Rock.]

I got the same speech, month after month, fighting it, hating it for the first several iterations... then caving, imploding, believing it.  And so it was that nothing ever changed, except for a worsening of CRPS, then the onset of infected prostheses and osteomyelitis, all accompanied by the collapsing joints of avascular necrosis.  Life may not have been anywhere near good, but there was a measure of orderliness to my degradation.  Woo-hoo!  I got worse but my pain management stayed the course;  I got the same medications, at the same strength, month after month, year after year, and it was consistently ineffective.  If I dared raise the specter of change, I got The Speech -- and the Handholding.

There came a visit, about 3 years ago, I think, when the last remnant of rebellion in me reared its faltering head.  What about x, what about y?  Couldn't we give z a go?  And then, poof, Dr. PainDood took back both his hand and his spiel, declared me to be on permanent pharmacological pain management, and turned me over to his Physician's Assistant, Allison.

I thought she was punking me, for sure, the first few times she began the appointment with news from a conference on neuropathic pain, with an update on the research into the inflammatory response, or with the suggestion that we give an old drug a new try at a radically different dose.  Sure, sometimes she pitched ideas that were clearly birthed in left field, but always, always, I knew that she believed that improvement was possible, that improvement was necessary.

Plus, she totally understood that my hands HURT, and so she left them the hell alone!  (You've no idea how much I dreaded Dr. PainDood's obsession with the shaking and holding of hands.  I figured it to be some sort of bizarre challenge to my integrity, a nonverbal inquiry into whether my continuing ed credits from the Emily Post Institute were up-to-date.)

She and I both thought that Ketamine might be my Big Chance, and it was Allison who discovered that there were treatment opportunities right here in Tête de Hergé.

You've probably heard about "contracts" between doctors and patients when it comes to the serious matter of narcotic pain management.  I probably signed one but I don't remember.  The guidelines make sense and I always followed them -- if I get my pain medications from this doctor, then I don't seek pain medication from any other doctor.  I take my meds as prescribed, and I don't sell them or give them to anyone else. 

The only deviant behavior I exhibit is a tendency to not take as much as I am told to take.  That's it.

Since my last appointment with Allison and my first appointment today with her replacement, Maria, I have tapered off of methadone and Percocet, and lived on ibuprofen.  I have been in more pain than I knew was possible.  I did it so that the ketamine infusions would have the best chance possible to work -- you gotta let that stuff antagonize the heck out of those NMDA glial cells, hoo-baby, uh-huh!

Of course, I've pretty much been bed-ridden from pain and sometimes I devolve into Pure Twitch.  Ibuprofen was dissolving my stomach lining, and beginning to mess with my kidneys. 

The only option offered after ketamine failed was to have an intrathecal pump "installed" so as to receive the very toxic, very potent, crazy-making drug Prialt, a synthetic model of a certain sea snail's venom.  Being too close to crazy already, and since my spine is riddled with thousands of micro-fractures already... I declined.

So the catastrophic hospital politely returned me to the care of Dr. PainDood, although they cordially invited me to check in every few months to see what might be blowing in the wind...

It's not like I've been hanging on the street corner these last few months, making drug deals -- at night, traipsing off to raves, clubbing -- life a sudden party.  Still, my welcome back into the bosom of narcotic pain management this afternoon was fraught with suspicion.

Between March and July, where had I been getting my medication?
Did the doctor at the catastrophic hospital prescribe me any pain killers?
Was I sure?
Did I understand the question?
Was I sure?
Did the doctor at the catastrophic hospital prescribe *anything*?
Was I sure?
Did I understand the question?

The idea that a patient would stop taking narcotics on their own just did not compute.  To cheer them up, I told them that I was filled with excitement at the thought of taking opiates again.  "I can hardly wait," I crowed.  "Please, please, return me to the stagnant status quo!"

Okay, so I may have left out that when we showed up this afternoon, they had no record of the appointment.  Did I fail to mention that the new PA, Maria, kindly worked me in, so that we didn't have to make another trip across the wilds of The Lone Alp?  She sorted through a complicated history in an organized way, applauded my reduction of methadone dosage from 40 mg to 10 mg, and...

suggested acupuncture.

Things are back to normal. 

the monks are deep in GOOG

Thank you, Larry Page.     

Thank you, GOOGLE.

It may just be a fleeting thing, this 12.49% after hours hike... But it will keep Marlinspike Manor's Feline Remnant in kibble for another month.

The monks are deep in GOOG, so we're getting ready to jump the orchard wall so as to get to the Cistercian's Celebratory Mass in time for the Second Quarter Earnings Processional -- the best incense wafting is right there at the beginning.    Abbot Truffatore left a garbled message, saying something about "good times" and breaking open the 2010 beaujolais nouveau... 

I'll probably hang out at the monastery after the party, for Compline. I love that haunting lullaby but hate having to make the return trek to The Manor afterward, all alone.  (I don't want to be caught in the back orchard after dark.  Who would?!) Thank God for air-conditioned tunnels and quiet-loving Postulants as escorts.

"May the almighty Lord grant us a quiet night and a perfect end...

and not let today's gain be sucked up by tomorrow's losses."  AMEN

Wednesday Night Suppers

I spent several hot hours this afternoon in a state that seemed simultaneously a part of waking, a part of sleeping, definitely involved in sweating, highly aware of felines, and disgusted by the telephone and its attendant messages.

Having hoofed it to the bathroom upon shaking off all of the above, that was where I screamed a tender "Bye-ay-ay!  Have-ah-ah gooo-oo-d thai-aye-aye-am!" to Fred, who was off to consort with the Militant Lesbian Existential Feminists at their regular Wednesday Night Supper. (I always wonder what Fred actually hears me screaming, since my phrases are sucked up by Marlinspike Hall's intramural echo effects -- It's all those Garderobe Chutes, remember?)

Oh, drat, I didn't quite get that right, did I?  I meant to say: the Militant Lesbian Existential Feminists and The Mousse, she of the indeterminate persuasions.  The Mousse was tagged as The Mousse due to her fondness for the chocolate version of this dessert, the only food [besides a garlic pizza] to ever strike me low with food poisoning.
As it would happen, The Mousse participated in the previously mentioned "several hot hours," horning in on my rest by leaving a long, idiotic, breathless message for Fred, complete with ingratiating references to my various past contributions to these weekly culinary adventures.  In fact, I was planning to get up and cook something fascinating for My Clueless Darling to take... but something, something, something seemed to push me back into my steamy lethargy, lolling about the bed, smushing one incubating hairy feline after another. 

[And when I use "loll," I mean lax, lazy, AND indolent.  Take that, you verbmeisters.]

In an effort to eat cake and ice cream at every possible opportunity, The Mousse strives to celebrate any birthday, inoculation, anniversary, voter registration, first or last drunk, momentous sexual indiscretion, substantial retail discount, and whatever.  It turns out that tonight is Elaine's birthday and Llewellyn-Femme's Fifth Anniversary of Her First Swim With Sharks.  Tiger shark diving season is getting ready to kick off down in the Bahamas, so The Wednesday Supper Gang is also going to lay hands on Llewellyn-Femme -- in a non-Christian (yet inclusive) kind of pseudo-ecumenical militant lesbian existentialist feminist way -- in order to bless and protect her from sharp white teeth and iron jaws during her stints in the cage.

Anyway, so The Mousse opines during her extended whine on my voice mail service that Fred should probably help out by bringing ice cream, which would go nicely with her shark-themed birthday gateau.
I know that everything she says is in code, and when I break it down, I toss and turn and incorporate her ball-breaking bullcrap into a fresh, restless dream.

I was hoping to sort of pull myself back together while Fred is partying down at E-Cong, a vast repast before him on the long folding table, surrounded by women who don't share his spiritual beliefs, and one who wants to jump his bones.

He's not the only guy.  The Church Secretary is a guy.  And sometimes our old friend Sven shows up. 

I am hoping, though, that Sven didn't decide to attend this evening's supper -- because Fred recently decided to take Sven's inventory -- a very rare thing for even-keeled, sweet-hearted Fred.  With a little time, he'll remember that Sven's a friend, even if we've all been pretty weak in the Friend Maintenance category.

It has to do more with Sven's wife, Hazelnut.  She's an honest-to-goodness Minister, having trained in Existentialism at the knobby knees of Rev. R. Lanier Clance, Founder and Minister Emeritus of the First Existentialist Congregation.  Somehow, she learned very little, and over time, has forgotten that.

Anyway, this is not a critique of her sermonizing... but of her vast talent for taking hostages. 

Oh, okay, it's all about her every-sixth Sunday delivery of the same message:  How Christianity Hurted Me (pout::pout::pout).  Her father, damn the man, was a missionary who inflicted the habit of prayer on his children while tending to a lost flock of Native Americans who had the gall to claim pre-existent spirit-oriented lives. 

At some point in her childhood, Hazelnut suffered a severe injury, lost a leg -- She lives in pain.

I think that she has pain as her core.  I think pain is what is going on. 

So Fred is hot under the collar, almost continually, about the feminist inroads being made at E-Cong.  He's at the point where he responds to any challenge by demanding that you ("you" standing in for one Militant Lesbian Existential Feminist) "define your terms." Unfortunately, some internet genius cobbled together a list of 74 different "types" of feminism, a list which Fred declared authoritative and inviolate, and which he promptly committed to memory.

Should you defy authority and, undaunted, offer up a 75th version, Fred will stomp his feet, sputter, and craftily reply: "Yeah?  Well, spell it!"

Sven is blind. 

I am not trying to elicit any particular response by informing you that Sven is blind.  I am simply trying to advance what may appear to be a stalled narrative.  I wish the story could be told without mentioning either Hazelnut's missing leg or Sven's missing eyesight. 

I'd much rather do a commercial for their jazz music -- Sven tickles the ivories, Hazelnut croons;  They're wonderfully good.  Neither is disabled, both are achievers, maybe even overachievers.  That Hazelnut manages to be a full time teacher, pursue her musical ambitions, and serve as a Minister, is downright inspirational.  Sven is equally busy, also holding down a challenging job while serving as the driving force in their jazz career.
I mention their achievements to the Fredster, adding the raising of two fine sons to the list.  I'm hoping that he'll remember that Hazelnut has a right to her opinions, that he really does like and appreciate her, and that Sven is quite capable of critical thought and is no one's captive minion.  

"Yeah?  Well, spell it!"

Fred is so angry at Hazelnut he could just spit.  He tells me that she trashes Christianity, and with glee.  He tells me she is rewriting the history of E-Cong (a large part of which is his own history) and inserting feminism into a perfectly fine stand-alone existential foundation.  The beginnings of this Existential Fellowship were solidly grounded in philosophy and psychology, in personal responsibility, and in caring for one another -- never a simple task.  "No one used the F-word back then!"

I never thought that I would be a sounding board for attacks on feminism, and in my own home, too.  Okay, so, technically, we are just caretakers here, squatters in this vast manor until such time as Captain Haddock and Company resume their  occupancy -- but it feels like home.  I don't think I've ever been so close to an Indentured Domestic Staff before coming to Marlinspike Hall. 

Just the other day, hands on his hips, standing in the middle of the Fragonard Hobby Room, lost in its thinly veiled erotic frills, Fred had something of a hissy fit, and dared to define fair feminism as stuff women do.  So very frustrated with E-Cong and its revisionist historians, he now mistakes gender as the driving force behind feminist thought... an easy mistake to make, but tiresome, too.  The pink tits and ass of Fragonard did not help matters any.  [I'm just sayin'.] 

Yes, yes.  We have waltzed around "what's-wrong-with-calling-it-humanism?" and there's been fervent fomentation of Søren Kierkegaard and philosophical approaches to Christian theologies.  Unfortunately, Hazelnut could be heard, in the background, improvising melody and turning "phallocentrism" and "don't-it-just-beg-the-question-baby?" into pure rhythmic scat.

As a result of  these highminded debates and other equally muddled communications, Fred resigned from the E-Cong Board of Directors, and Sven promptly signed on.  Fred thinks that Hazelnut forced Sven to put himself up for nomination and that his presence signals the beginning of Militant Lesbian Existential Feminism's heyday.

"Yeah, well..."

My patient and compassionate Fred recently decided that Sven would be an Excellent Guy were he just free of Hazelnut.  His reasoning is that Sven doesn't know or have the capacity to navigate this world (being blind from birth and all) and has come to so depend on his wife that he is "clearly" suffering from... Stockholm Syndrome.  That's right, Sven has been held hostage and has come to sympathize with his tormentor, his wife, his partner in song -- Hazelnut the Haggling Hun.

I don't mind listening to most anything Fred has on his mind.  Like everyone, he works things out sometimes by talking things out.  He's very procedural.  He's an incredible writer, very clear, his words pristine in concert with his thought.  His humor will surprise you.  His elegant persuasions sway, his logic is rarely fallacious.

But he isn't budging on this one.  The Fredster fails to progress, his labor stalled. Which would also be fine, even kind of fun to debate, to examine -- but for one unanticipated twist:  Sven needs to be enlightened. That's right, Fred plans to inform his friend that he is being manipulated and hijacked in the worst way.  He plans to soften the blow by reminding Sven that he certainly doesn't deserve this fate, and shouldn't be judged for having subverted his good judgment to Hazelnut's ill-conceived opinions and attitudes.  What with Sven being so handicapped 'n all, no one will judge him harshly for his singular lack of backbone and his inability to agree with Fred over Hazelnut.

I heard a peculiarly soft voice issuing from my gaping maw, and thought:  Uh-oh.  My superior tone was dripping with condescension, equally at ease when among the people as when mingling with my equals.

I was enunciating, in the manner elicited back in my school days by a demonic French prof who would mark cadence by fierce taps on my curly head with a wooden ruler.  Always a bad sign, this patient, sneering enunciation.

Fred promptly made me define my terms.  Feeling kind of antithetical (also nauseated), I proceeded to draw a distinction between being correct and being right.  As in, he may be correct, but I am clearly right.  Miss Marmy Fluffy Butt, my Debate Coach, nodded her approbation.

And so I cling to my rightness.  He has no business saying anything of the sort to Sven.  "Sven, my friend, your whole life is but a regurgitation of your wife's bullshit... It's called the Stockholm Syndrome... It's a psychological paradox and I just thought you oughta know that you haven't had an idea to call your own in over 20 years... But I wanna reiterate that you couldn't help it, you're blind as a freaking bat!"

I don't think Fred heard any of my reasons to shut-the-hell-up-about-the-silly-stockholm-syndrome but I think I saw a flicker of something in his eyes when I said:  "Well, at least promise me that if you say this awful thing to him, that you will stand by him as a friend after it is said.  You have a responsibility to do so..."  It was probably a trick of lighting.

Who would have thought that these Wednesday night "church" suppers had so much at stake?  Jealousies of all sorts, machinations worthy of Machiavelli, insincerity as an art form, suffering bodies, suffering minds, troubled souls. 

I guess I can decide not to give a crap about The Mousse.  Given the Sven, Fred, and Hazelnut Triad, she just doesn't measure up as a worry or concern.  She's a simple annoyance. Just try and jump his bones, you dessert-driven nagging harpy, I don't care.  Whose Manor does he come home to, hmmm?

I'm up in the Computer Turret at the moment (obviously, huh?!) and it looks like Ruby the Honda CRV is coming down the road, throwing up dust and scaring our herd of Square Island Buffalo. Yep, that's her, weaving and dodging those giant hooves.  Unfortunately, La Bonne et Belle Bianca Castafiore pulled up the drawbridge when she came home from rehersals earlier --  he's gonna have to leave Ruby to crank it back down...

What the... ?

Even from here, it's clear that Fred has the mother of all black eyes and two (maybe three) fingers in a splint.  And I am not sure, but I think he is GURGLING.

Bless his heart.

I think I'll just sleep up here tonight.

Recent CRPS Research

** LOOKING FOR CLINICAL TRIALS? CLICK HERE, FOR STARTERS **

I'm not feeling much like blogging these days, being about as busy as a body can be hosting Tête de Hergé's most anticipated Pity Party of the 2011 season.  Nonetheless, having run across some interesting newly published research, I did some wicked-fast copying and pasting, cogitating and perusing, and hope that you will find some of this CRPS work helpful and interesting.  I confess to having focused on aspects of this Sucky Disorder that are posing a challenge and raising questions in my life at present:  sensory dysfunction, disorder of body schema, hemilateral sensory disturbances, dystonia, and -- what the heck! -- ketamine induced liver injury!

There is some comfort in noting the many articles and topics being published and discussed -- just not enough comfort to warrant ending the Pity Party.  Maybe come August.  (Actually, ManorFest is about a week away, at which time my rabid navel-gazing will no longer be tolerated around here.  Already, people are strumming their fingers and rolling their eyes at my wailing and cultivated introspection.  I saw a preliminary ManorFest schedule in which I am relegated to working night shifts, exclusively, far from the public eye.  Harrumph.)

************************************************************************

Title
Comparable disorder of the body schema in patients with complex regional pain syndrome (CRPS) and phantom pain.

Author(s)
Reinersmann A, Haarmeyer GS, Blankenburg M, Frettlöh J, Krumova EK, Ocklenburg S, Maier C

Institution
Abteilung für Schmerztherapie, Berufsgenossenschaftliches Universitätsklinikum Bergmannsheil GmbH Bochum, Ruhr-Universität Bochum, Bochum, Deutschland, annika.reinersmann@rub.de.

Source
Schmerz 2011 Jul 9.

Abstract
In patients with complex regional pain syndrome (CRPS) a disruption of the body schema has been shown in an altered cortical representation of the hand and in delayed reaction times (RT) in the hand laterality recognition task. However, the role of attentional processes or the effect of isolated limb laterality training has not yet been clarified.The performance of healthy subjects (n=38), CRPS patients (n=12) and phantom limb pain (PLP) patients (n=12) in a test battery of attentional performance (TAP) and in a limb laterality recognition task was compared and the effect of limb laterality training in CRPS patients and healthy subjects evaluated.The RTs of both CRPS and PLP patients were significantly slower than those of healthy subjects despite normal TAP values. The CRPS and PLP patients showed bilaterally delayed RTs. Through training RTs improved significantly but the RTs of CRPS patients remained slower than those of healthy subjects. In this study an equal disruption of the body schema was found in both CRPS and PLP patients which cannot be accounted for by attentional processes. For CRPS patients this disorder cannot be fully reversed by isolated limb laterality recognition training.

Language
GER

PubMed ID
21739258

************************************************************************

Title
Impaired Hand Size Estimation in CRPS.

Author(s)
Peltz E, Seifert F, Lanz S, Müller R, Maihöfner C

Institution
Department of Neurology, University of Erlangen-Nuremberg, Erlangen, Germany.

Source
J Pain 2011 Jul 7.

Abstract
A triad of clinical symptoms, ie, autonomic, motor and sensory dysfunctions, characterizes complex regional pain syndromes (CRPS). Sensory dysfunction comprises sensory loss or spontaneous and stimulus-evoked pain. Furthermore, a disturbance in the body schema may occur. In the present study, patients with CRPS of the upper extremity and healthy controls estimated their hand sizes on the basis of expanded or compressed schematic drawings of hands. In patients with CRPS we found an impairment in accurate hand size estimation; patients estimated their own CRPS-affected hand to be larger than it actually was when measured objectively. Moreover, overestimation correlated significantly with disease duration, neglect score, and increase of two-point-discrimination-thresholds (TPDT) compared to the unaffected hand and to control subjects' estimations. In line with previous functional imaging studies in CRPS patients demonstrating changes in central somatotopic maps, we suggest an involvement of the central nervous system in this disruption of the body schema. Potential cortical areas may be the primary somatosensory and posterior parietal cortices, which have been proposed to play a critical role in integrating visuospatial information. PERSPECTIVE: CRPS patients perceive their affected hand to be bigger than it is. The magnitude of this overestimation correlates with disease duration, decreased tactile thresholds, and neglect-score. Suggesting a disrupted body schema as the source of this impairment, our findings corroborate the current assumption of a CNS involvement in CRPS.

PubMed ID
21741321

************************************************************************

Title
The Specificity and Mechanisms of Hemilateral Sensory Disturbances in Complex Regional Pain Syndrome.

Author(s)
Knudsen L, Finch PM, Drummond PD

Institution
School of Psychology, Murdoch University, Perth, Western Australia.

Source
J Pain 2011 Jun 22.

Abstract
Hyperalgesia often extends from the affected limb to the ipsilateral forehead in patients with complex regional pain syndrome (CRPS). To investigate whether this is more common in CRPS than other chronic pain conditions, pressure-pain thresholds and sharpness to a firm bristle were assessed on each side of the forehead, at the pain site, and at an equivalent site on the contralateral side in 32 patients with chronic pain other than CRPS (neuropathic or nociceptive limb pain, radicular pain with referral to a lower limb or postherpetic neuralgia), and in 34 patients with CRPS. Ipsilateral forehead hyperalgesia to pressure pain was detected in 59% of CRPS patients compared with only 13% of patients with other forms of chronic pain. Immersion of the CRPS-affected limb in painfully cold water increased forehead sensitivity to pressure, especially ipsilaterally, whereas painful stimulation of the healthy limb reduced forehead sensitivity to pressure pain (albeit less efficiently than in healthy controls). In addition, auditory discomfort and increases in pain in the CRPS-affected limb were greater after acoustic startle to the ear on the affected than unaffected side. These findings indicate that generalized and hemilateral pain control mechanisms are disrupted in CRPS, and that multisensory integrative processes may be compromised. PERSPECTIVE: The findings suggest that hemilateral hyperalgesia is specific to CRPS, which could be diagnostically important. Disruptions in pain-control mechanisms were associated with the development of hyperalgesia at sites remote from the CRPS limb. Addressing these mechanisms could potentially deter widespread hyperalgesia in CRPS.

PubMed ID
21703937

************************************************************************

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

Author(s)
Munts AG, Mugge W, Meurs TS, Schouten AC, Marinus J, Moseley GL, van der Helm FC, van Hilten JJ

Source
BMC Neurol 2011 May 24; 11(1):53.

ABSTRACT:
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.

PubMed ID
21609429

************************************************************************

Title
Drug-induced liver injury following a repeated course of ketamine treatment for chronic pain in CRPS type 1 patients: A report of 3 cases.

Author(s)
Noppers IM, Niesters M, Aarts LP, Bauer MC, Drewes AM, Dahan A, Sarton EY

Institution
Department of Anesthesiology, Leiden University Medical Center, Leiden, The Netherlands.

Source
Pain 2011 May 3.

Abstract
Studies on the efficacy of ketamine in the treatment of chronic pain indicate that prolonged or repetitive infusions are required to ensure prolonged pain relief. Few studies address ketamine-induced toxicity. Here we present data on the occurrence of ketamine-induced liver injury during repeated administrations of S(+)-ketamine for treatment of chronic pain in patients with complex regional pain syndrome type 1 as part of a larger study exploring possible time frames for ketamine re-administration. Six patients were scheduled to receive 2 continuous intravenous 100-hour S(+)-ketamine infusions (infusion rate 10-20mg/h) separated by 16days. Three of these patients developed hepatotoxicity. Patient A, a 65-year-old woman, developed an itching rash and fever during her second exposure. Blood tests revealed elevated liver enzymes (alanine transaminase, alkaline phosphatase, aspartate transaminase, and γ-glutamyl transferase, all⩾3 times the upper limit of normal) and modestly increased eosinophilic leukocytes. Patient E, a 48-year-old woman, developed elevated liver enzymes of similar pattern as Patient A during her second ketamine administration and a weakly positive response to antinuclear antibodies. In a third patient, Patient F, a 46-year-old man, elevated liver enzymes (alanine transaminase and γ-glutamyl transferase) were detected on the first day of his second exposure. In all patients, the ketamine infusion was promptly terminated and the liver enzymes slowly returned to reference values within 2months. Our data suggest an increased risk for development of ketamine-induced liver injury when the infusion is prolonged and/or repeated within a short time frame. Regular measurements of liver function are therefore required during such treatments. During repeated ketamine infusion for treatment of CRPS1, three patients developed liver injury probably allergic in nature.

PubMed ID
21546160

Astounding Prescience

You have to admit that, on occasion, I can be astonishingly prescient.  I feel one of those instances coming on...

Today, at long last, we will hear the closing arguments in the Casey Anthony trial.  I predict it will go thusly:

PROSECUTION:  She did it!
DEFENSE:  No, she didn't!  You did!

I'm not stopping there.  The scuffed, worn, slippery grass of Wimbledon calls, you know.  ("Wimpleton," as the locals designate this annual Holy Tourney.)

Nadal will win. 

I won't even hedge by saying that were Djokovic to win -- in fine fashion, that is -- I'd also be thrilled.  It's gonna be a great match.

I'd say it's been an awesome weekend for my sporting interests, except that Tito Ortiz managed to knock out Bader in the first round.  On the upside -- Chris Leben has TOTALLY rehabilitated himself in my eyes, and Wanderlei Silva needs to do some thinking.  (I contend that he is the animated, ripped version of Homer Simpson.)  Congratulations, Chris. 

Leben was transferred to my good side when he took on Yoshihiro Akiyama with short notice and good humor, then submitted him with 30 seconds left on the clock.

I failed to note yesterday's instance of prescience in this blog, having been distracted by scream-inducing spastic legs and yet another puncture of said legs by one Buddy the Kitten. 

But you can trust me.

I called Sharapova's loss way-y-y ahead of time, based on my extreme disappointment in her semi-final match, a match that might as well have been played in the first round of some country club tourney.  In Antarctica (South Sandwich territories...).

None of that, though, impugns the accomplishments of Petra Kvitova: Kde je vlakové nádraží?!

Lastly, a bit of non-prescience for you:  Last year, or the year before, I cannot differentiate -- I wrote a post that included a discussion of women's tennis underwear.  The number of hits that post receives at this time of year is astounding.  Top searches include "tennis undies," "venus williams ass" and "serena williams cat suit." Also, somewhat inexplicably, given her [second] retirement in January:  "justine henin's boobs."

Okay, so now you know exactly what I know.

Uh-oh.

Yay, Us!

Has this happened to you yet? 

A little background:  My blood "family" is... dilute.  I guess not having to worry overly much about the longterm effects of inbreeding or scoliosis brought on by excessive receipt of hugs is a good thing.  My brother and I have dedicated our existence to not reproducing, to ending our role in this nonsense with the final beat of our hearts. 

Oh hell, now I need to proffer even more background.  When I say "my brother," I am referring to Grader Boob.  We grew up together.  Or tried!  He's a Brainiac and something of a Recluse, though he claims to have taught and pummelled into maturity a generation or so of serial Freshmen and Sophomores at one of the South's finest public universities.  You can't do that and be reclusive.

Also, he *might* be Richard Russo.

I have another full-blooded brother -- if, that is, "full-blooded" means a brother with whom one shares parentage.  Entire parentage.  We *think*.  Anyway, he has a professional moniker, too.  His is Tumbleweed, or TW.  A far cry from Howie.  [Oops.]  We thought for years that he might actually be Jerry Garcia but then a professionally analyzed photograph of the two of them in the same place and time (Berkeley Greek Theater, 1983), pretty much ended that wild bit of speculation. 

Unbeknownst to one another, Tumbleweed and I were also simultaneous and contemporaneous "Derelicts and Delinquents Plagu[ing] Durant Avenue" -- back in the 80s, again (a potent curse).

TW had the intelligence -- the brainiac gene is strong in the males of our clan -- to leave the family unit early.  Of course, this meant finding food in garbage cans, sleeping under the stars and, I dunno, maybe around some nasty, mean people, including a paranoid ex-Company Man who had the annoying habit of discharging his firearm into other peoples' highly vascularized spleens.  But it also meant following The Dead, loving the Canyon, learning the River, and forging a good life as a good man. 

The only thing that I wish all three of us had made clear [limpide comme du cristal] with each other before Pod Separation was the whole anti-procreation stance.  Because TW, ever the optimist, went and had a child -- who has had a child, herself.  He's a Grandpa!  I know the name of his daughter and granddaughter but force myself to forget them.  We will never meet.  [Oops.  Gloom and Doom got past the Manor Sentries, along with violent, horrid, scream-inducing spasms in my legs. Apologies from Management.]

It's a natural turn in the bend to go from familial intricacies to the Anthony family down Orlando way. 
In my daily email to a woman I have come to love in the way I imagine one loves a sister, I blurted a telling blurt this afternoon. This Virtual Sibling and I have become engrossed by The Very Weird Casey Anthony Trial, though we seem to interpret testimony, facial expressions, body language, and sociopathy in divergent ways.  [More on sisters, half and step, a few inches down] 

kept the tv on and watched the trial every time i took a break... lordy, lordy, lordy. you know... my family is/was dysfunctional but i am slightly cheered to think that we never murdered anyone, or covered up major crimes. we had loads of denial, silence, repression, enabling, and our share of abuse. but we never murdered anyone.   yay, us!

Yeah, so, there were three in the original litter.  TW, Grader Boob, and me, "the chirp" (a phrase from Joni Mitchell's Miles of Aisles, her designation for her role in The Band -- in her case, L.A. Express, back during the Court and Spark tour).  I think TW had some musician in him, God only knows from where, and music is a huge part of each of our lives, but a band, we are not.  Oh, and as further evidence of the brainiac potential being limited to the Y chromosome, I took up the violin as part of my rehab after my first shoulder replacement (of six or seven).  Fred has a fair number of guitars and a keyboard.  Marmy Fluffy Butt plays a mean harmonica despite a pronounced pathological overbite, a drool issue, and a cute little receding whiskered chin. 




Right.  An unexpected musical interlude.  Ah-h-h.  Consider the past blasted.

So, the second litter of the Mother-Unit, my technical half-siblings, includes one Hilmi and one Lale, both wonderful people who have both bravely reproduced what sound like fine Planetary Citizens, and again, there's been no inbreeding, no obvious defect in the genetic machinery.  And yes, their boys are all brainiacs: Young John, Hilmi's offspring, is a regular Einstein / Schweitzer Albert Combo (At age 6, he raised money to buy shoes for 94 Thai Tots, something he will never be able to live down);  Lale's son Adrean is clearly destined for fame, wheeling and dealing, working relationships, sensing the synergies, working them... Should these nephews, but a year apart in age, decide to combine their talents one day, the world shall be their oyster.*

*"The world is the mollusc of your choice." Pterry, Discworld, passim.
*"The world is your oyster" is a quote from Shakespeare's The Merry Wives of Windsor

Falstaff: I will not lend thee a penny.
Pistol: Why then the world's mine oyster, Which I with sword will open.
Falstaff: Not a penny.

The original implication of the phrase is that Pistol is going to use violent means (sword) to steal his fortune (the pearl on finds in an oyster).  We inherit the phrase without the original violent connotation to mean that the world is ours to enjoy. -- gbuttters

The Mother-Unit had the second litter with her second husband, a beautiful, lovely and unlikely man, Necip. [It bears mentioning, as he is gone now, and much missed.  One of these summer days, you and I will have to repair to the Computer Turret with a pitcher of gin and tonic, and I will tell you the tale of the Turkish obstetrician/gynecologist who was one of the official physicians to the United States Olympic Boxing Team... It's a good'un, as tales go.]
 
On what I guess would be the other side of the tracks, Grader Boob and I, the chirp, hooked up with some step-parentage who brought along offspring and bad memories of her own.  Specifically, I was gifted with an older sister, whom we called Brute -- because she was anything but.  Seriously, she had hands you could see through.  She squealed, ducked, and put her mitt over head at the sound of bat meeting ball -- and she was always carefully positioned in what was known as Far Far Outfield, as in "a little farther, a little farther... that's good!"
 
Now... Brute had a son, but from what I hear, he escaped the Curse of the Brainiacs.  But that would figure, because he has no blood relationship with The Brood.  I am sure he is talented at something, and is likely a handsome guy -- but I just haven't heard.  Actually, I blame the sperm donor.  Brute deserved a Prince, a Peach, A Pear, but she, too, was smitten with the need to leave and so married the first biped that came along. 

Brute learned and now, if I put ear to ground, there are rumors of some guy named, wonderfully enough, Joe.  The info on Joe is pleasing...
 
Since blood relationships turned out to be meaningless to me, in any real way, I hope you can understand that I sometimes get confused.
 
I try to eke out some line of inherited relationship, I ache for commonalities that might be a sign of God, that sort of thing.
 
Hell, I had to look up the difference between cousin and nephew a few minutes ago.
 
So... as I was pondering a long overdue email I was writing to my half-sister Lale, I got lost trying to remember the name of Hilmi's wife (I think his second, I am not sure.).  I like her.  We've corresponded, she's a smart, funny, and snarky lady -- and I was frustrated by my brain's lack of cooperation.  Anyway, she has RA and I seemed to remember that it was kind of kicking her butt last I heard, but damn, I couldn't get her name from the tip of my tongue to my dancing fingers.
 
Then I remembered that I had subscribed to a feed of her blog three or four years ago -- a blog that I had stumbled upon in the self-indulgent confusion that is Facebook.  I had not read it since -- not because she doesn't write well or it was not interesting (she does and it is) but because I just forgot.
 
So I waltzed over to my Google Reader and scanned down the bazillion things to which I am subscribed.
I marvel that there have been only ten entries since last I looked at it, but give it a few clicks -- got to get her name, that name, arg!
 
Tina.
 
And I see that she wrote something just six days ago.
 

As I was making a cup of coffee this morning, I don't know if it's the combination of a summer morning and the smell of coffee, but I was instantly transported (mentally) to my grandpa's house at the beach.


I don't think that anyone really knows how much I think about living at the beach. When I say "the beach", I mean Oak Island. That's the beach that my family has gone to since I was an infant (around 6 weeks old). It's the beach that I took my son to visit when he was 6 weeks old - kind of like a "sand baptism"! Every time I'm on my way to visit my grandpa, and I get to the bridge leading to OI, I feel like I'm HOME. I have lived in the same county my whole life, but the beach feels like HOME. Even as I type this, I can feel that feeling I get when I'm driving over the bridge and looking at the Intracoastal Waterway on either side of me. Even in the dead of winter, I get that same feeling so I know it's not just the need of vacation.


It hit me this morning, as I was making my cup of coffee, that YES I WILL eventually live at the beach. This is one dream that I will not give up! I've given up a lot of dreams along the way...whether they were just dreams I had as a child that I outgrew, or if they were dreams that I had to re-evaluate because of RA. My desire to live at the ocean is still there. It has only gotten stronger.

And I feel like I've stumbled onto something beautiful, someone beautiful, but also into a moment I was not meant to witness.  A sister's secret life. 

I love what she wants for herself and feel a thickening of this "family"'s thin blood, hear the need, the want, revel in the certainty.  I look politely in the other direction and let the words blur.

I finish writing to Lale.

I erase "So what's shakin' with Hilmi's wife, John's mother?" (showing off my mastery of kinship terms) and I ask, instead, "How is Tina?" 

I say, "Please say 'Hello' to her for me" and I hear the sound of water lapping, feel the ease of warmth on pained muscles, swollen joints, see her bloodline, an old Hilmi launching a boat, an adult John lifting a window to let in the breeze. 

Oak Island Nature Center

CRPS Clinical Trials Open as of June 2011

By open clinical trials, I mean that either recruitment has not yet begun or is ongoing.  The U.S. National Institutes of Health listings presently contain 17 such trials:

1.  The Effect of Vitamin C on Preventing Complex Regional Pain Syndrome (CRPS Type I) Following Ankle Fracture
ClinicalTrials.gov Identifier: NCT01338129
Location:  Rabin Medical Center, Petah Tikva, Israel

2.  Graded Exposure (GEXP) in Vivo Versus Physiotherapy in Complex Regional Pain Syndrome Type I (CRPS-I)
ClinicalTrials.gov Identifier: NCT00625976
Responsible Party: Dr. M. Goossens, Maastricht University, Maastricht, The Netherlands
 
3.  Pain Exposure Physical Therapy (PEPT) Versus CBO in Patients With Complex Regional Pain Syndrome Type I (CRPS-1) (PEPTOC)
ClinicalTrials.gov Identifier: NCT00817128
Study Sponsor: Radboud University, Nijmegen, The Netherlands 
 
4.  Study of Proteins Associated With Complex Regional Pain Syndrome
ClinicalTrials.gov Identifier:  NCT00033969
Location:  National Institutes of Health Clinical Center, 9000 Rockville Pike, Bethesda, Maryland, United States, 20892
 
5.  Intravenous Immunoglobulins in Complex-regional Pain Syndrome (PAINLESS)
ClinicalTrials.gov Identifier:  NCT00949065
Responsible Party:  Franz Blaes, MD, Dept. of Neurology, Justus-Liebig-University, Am Steg 14, 35392 Giessen, Germany
franz.blaes@neuro.med.uni-giessen.de
 
6.  Neurotropin to Treat Chronic Neuropathic Pain
ClinicalTrials.gov Identifier: NCT00006289
Location:  National Institutes of Health Clinical Center, 9000 Rockville Pike, Bethesda, Maryland, United States, 20892
Sponsor:  National Institute of Nursing Research

7.  Use of Compression Glove to Prevent Complications After Distal Radius Fractures: a Randomized Controlled Trial
ClinicalTrials.gov Identifier: NCT01118715
Responsible Party: Michael Shuler, MD, J&M Shuler, Inc.
706-424-8438

msimmss@hotmail.com

8.  Analysis of Photoplethysmographic Signal in Lumbar Sympathetic Block (park001)
ClinicalTrials.gov Identifier: NCT01134289
Location/Contact:  Department of Anesthesiology and Pain Medicine, Seoul National University Hospital,
Seoul, Republic of Korea, 110744
Soo Young Park, MD 82-2-2072-0881 soo02@snu.ac.kr

9.  Peer Mentorship: An Intervention To Promote Effective Pain Self-Management In Adolescents
ClinicalTrials.gov Identifier:  NCT01118988
Responsible Party:  Lonnie K. Zeltzer, MD/Professor, Director of UCLA Pediatric Pain Program, UCLA Department of Pediatrics
Contacts:  Lonnie K Zeltzer, MD 310-825-0731  LZeltzer@mednet.ucla.edu
Jennie CI Tsao, Ph.D.  310-825-0731  JTsao@mednet.ucla.edu

10. Evaluation and Diagnosis of People With Pain and Fatigue Syndromes
ClinicalTrials.gov Identifier:  NCT00677157
Sponsor:  National Institute of Nursing Research (NINR)
Contact: Patient Recruitment and Public Liaison Office (800) 411-1222  prpl@mail.cc.nih.gov

11.  Regional Anesthesia Military Battlefield Pain Outcomes Study (RAMBPOS)
ClinicalTrials.gov Identifier: NCT00431847
Contact: Yolanda S Williams, MPH
(215) 823-5800 ext 2774
yolanda.williams5@va.gov
Contact: Holly Luu, BA
(215) 823-5800 ext 6506
holly.luu@va.gov
Sponsored by the Dept of Ver
Principal Investigator:  Rollin McCulloch Gallagher, MD MPH, Pain Management Service
LOCATIONS:
Locations

United States, District of Columbia
Walter Reed Army Medical Center
Washington, District of Columbia, United States, 20307
Contact: Lt. Col. Chester C Buckenmaier III, MD 202-782-7652

United States, Maryland
National Naval Medical Center
Bethesda, Maryland, United States, 20889
Contact: LCDR Michael Kent, MD 202-782-0917

United States, Pennsylvania
Pain Management Service
Philadelphia, Pennsylvania, United States, 19104
Contact: Lynn A Watson (215) 823-5800 ext 6023 lynn.watson@va.gov
Contact: Yvette Roberts (215) 823-5800 ext 6020 yvette.roberts@va.gov
Principal Investigator: Rollin McCulloch Gallagher, MD MPH
Sub-Investigator: Joan S Thomas
Sub-Investigator: Holly Luu, BA
Sub-Investigator: Yolanda S Williams, MPH

United States, Texas
US Army Institute of Surgical Research/Brooke Army Medical Center
Fort Sam Houston, Texas, United States, 78234
Contact: Cpt. Laura McGhee, PhD 210-916-5482

12.  Susceptibility to Chronic Post-Traumatic Extremity Pain
ClinicalTrials.gov Identifier: NCT00672711
Contact: Cecile Pestano, RN
248-964-3440
cpestano@beaumont.edu
Contact: Nickole Carlson, RN
248-898-1907
NCarlson@beaumont.edu
Responsible Party:  Craig T. Hartrick,MD, William Beaumont Hospital (Royal Oak, Michigan)
Phone: 248-898-1907



13.  Efficacy of Etoricoxib on Peripheral Hyperalgesia 
ClinicalTrials.gov Identifier: NCT01088256
Responsible party/Contact: Dr. Christoph Maier  +49/234/3026366  christoph.maier@rub.de
Ruhr University of Bochum, Germany

14.  Adenosine Activity in Producing Venoarteriolar Reflexes
ClinicalTrials.gov Identifier: NCT01280071
Location: Tel-Aviv Sourasky Medical Center, Israel
Contact: Lior Dayan, MD
972504051014
liordayan.3105@gmail.com

15.  Transcranial Magnetic Stimulation (TMS) Effects on Pain Perception
ClinicalTrials.gov Identifier: NCT00349050
Responsible Party:  Jeffrey J. Borckardt, Ph.D., Associate Professor, Department of Psychiatry and Behavioral Sciences, Department of Anesthesiology and Perioperative Medicine, Medical University of South Carolina (Charleston)
(843)867-5142

borckard@musc.edu

16.  Dupuytren's Disease and Extracorporeal Shockwave Therapy (DupuyShock-2010)
ClinicalTrials.gov Identifier: NCT01184586
Location:  Hannover Medical School, Plastic, Hand and Reconstructive Surgery, Hannover, Germany, 30625

Contact: Karsten Knobloch, MD
0049511532 ext 8864
knobloch.karsten@mh-hannover.de

Contact: Marie Kuehn
0049511532 ext 8864
Marie.Kuehn@stud.mh-hannover.de

17.  Effects of Vaporized Marijuana on Neuropathic Pain
ClinicalTrials.gov Identifier: NCT01037088
Contact: Haylee E. Donaghe, MS

916-734-2935
hedonaghe@ucdavis.edu
Principal Investigator:  Barth L Wilsey, MD  University of California, Davis

LINDSEY J. BAUM: Two Years Missing

Around 9:15 pm on June 26, 2009 Lindsey J. Baum, an 11-year old from the tiny town of McCleary, Washington, disappeared while walking from a friend's house to her home, only four short blocks away.

She's now 13.  Her birthday is coming up on July 7.

The physical changes a young girl experiences in that particular span of ages are sure to have greatly altered her appearance.

It feels foolish to continue noting that, on June 26, 2009, Lindsey was 4-foot 9-inches tall, weighed 80 pounds, her brown hair and brown eyes offset by a hooded pullover.

Still, there are things about the face that never change. Those eyes, that mouth, the smile. Face shape, feature spacing and scale. Age-invariant characteristics. Forensic artists (and the software they use) factor in the ways a person has changed in the past, even as short a past as Lindsey's, and how relatives have aged, as well as extrapolations based on large amounts of data from the wider population.

It is reported that Lindsey has a scar over her left eye, a dark brown birthmark on her right wrist and colored fillings in some of her teeth.

But she's doubtless no longer 4'9" and not likely to still weigh 80 pounds. Twelve to thirteen year old girls average 60-63 inches in height and 95-105 pounds in weight. Of course, her numbers at age 10 were already higher in each category than the average.

That summer evening two years ago, Lindsey had just argued with her brother, but most everyone notes that she wasn't storming off mad. She didn't have the accoutrements you think required of a modern runaway -- no money, no cell phone, no change of clothes.

Some friends set out with her, so she was accompanied for a while before they peeled off to go to their own homes for dinner, or homework, a bath or shower, whatever.

Two of those four blocks are reported to be somewhat industrial -- though we are talking *rural* small town. One block away is access to a major highway.

As any child would be, Lindsey was troubled by her parents' recent divorce. Her father lived in Tennessee. He was deployed to Iraq not long after she went missing.  Her mother and brother no longer live in McCleary.  Life for them has been hard and cruel.

The last time I checked, a reward of $30,000 is being offered by Crimestoppers and the National

Center for Missing and Exploited Children. 

There have been many searches, search warrants, several people of interest -- but no signs of Lindsey, and no real clues or advances in the case.  Still, we all still shake our heads and mutter that someone, somewhere, knows something.  What will it take for that someone to tell that something, and will it bring the child home?

If you have any information regarding Lindsey Baum,

please call the Grays Harbor County Sheriff's Office

at 866-915-8299 [Tip Hotline].

NATIONAL CENTER FOR MISSING & EXPLOITED CHILDREN

1-800-843-5678 (1-800-THE-LOST)

McCleary Police Department (Washington) 1-360-533-8765

Or simply call 911.