Saturday, July 2, 2011

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!
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

Wednesday, June 29, 2011

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 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) 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) Identifier: NCT00817128
Study Sponsor: Radboud University, Nijmegen, The Netherlands 
4.  Study of Proteins Associated With Complex Regional Pain Syndrome 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) Identifier:  NCT00949065
Responsible Party:  Franz Blaes, MD, Dept. of Neurology, Justus-Liebig-University, Am Steg 14, 35392 Giessen, Germany
6.  Neurotropin to Treat Chronic Neuropathic Pain 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 Identifier: NCT01118715
Responsible Party: Michael Shuler, MD, J&M Shuler, Inc.

8.  Analysis of Photoplethysmographic Signal in Lumbar Sympathetic Block (park001) 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

9.  Peer Mentorship: An Intervention To Promote Effective Pain Self-Management In Adolescents 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
Jennie CI Tsao, Ph.D.  310-825-0731

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

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

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
Contact: Yvette Roberts (215) 823-5800 ext 6020
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 Identifier: NCT00672711
Contact: Cecile Pestano, RN
Contact: Nickole Carlson, RN
Responsible Party:  Craig T. Hartrick,MD, William Beaumont Hospital (Royal Oak, Michigan)
Phone: 248-898-1907

13.  Efficacy of Etoricoxib on Peripheral Hyperalgesia Identifier: NCT01088256
Responsible party/Contact: Dr. Christoph Maier  +49/234/3026366
Ruhr University of Bochum, Germany

14.  Adenosine Activity in Producing Venoarteriolar Reflexes Identifier: NCT01280071
Location: Tel-Aviv Sourasky Medical Center, Israel
Contact: Lior Dayan, MD

15.  Transcranial Magnetic Stimulation (TMS) Effects on Pain Perception 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)

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

Contact: Karsten Knobloch, MD
0049511532 ext 8864

Contact: Marie Kuehn
0049511532 ext 8864

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

Principal Investigator:  Barth L Wilsey, MD  University of California, Davis

Sunday, June 26, 2011

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].


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

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

Or simply call 911.