2013 Achilles Walk for Hope and Possibility

From a mailing by Jim Broatch of RSDSA:    

Welcome to "TEAM RSDSA"

2013  Achilles Walk for Hope and Possibility Registration


Join Team RSDSA for an exhilarating day!  Packed with plenty of love and emotion, we walk for the entire CRPS/RSD Community. We've made it really easy for you to register.  Just click on the [green] REGISTER button below.

Team RSDSA participates in the Achilles Walk for Hope & Possibility to provide support, education, and hope for everyone affected by the pain and disability of CRPS/RSD while we drive research to provide better treatment and a cure.

Approximately 50,000 new cases of CRPS occur each year, yet most individuals are not familiar with it. We are on a mission to create awareness, and to fund critical research toward the advancement of earlier diagnosis, better treatment options and hopefully, a cure for CRPS/RSD.

Your participation and contribution supports RSDSA’s mission. Together we can make a difference one step at a time. Thank you for being a RSDSA Team Member!

 Date

Sunday, June 30, 2013 at 9:00 AM

 Location

Central Park & Virtually Around The Globe
New York, New York

 Contact

Pamela Kientzler
877-662-7737
achilleswalk@rsds.org

Type	Price	Quantity
Walker	$38.00	0                          1                          2                          3                          4                          5                          6     7     8     9                          10
Virtual Walker	$20.00	0                          1                          2                          3                          4                          5                          6     7     8     9                          10

I registered offline and need to create a fundraising page
- or -Someone else registered me and I need to create a page

another stupid cat post - you know you love 'em

i am coming to terms with the fact that i am the marlinspike hall cat lady and that people will
forever gawk and giggle (from nerves, you know), and possibly even congregate below the
computer turret, pointing, whispering, wondering how many felines i've stashed up there.
  the truth, that we have but three, and a whole manor for their happiness, does not seem to matter.
 o, the sorrow of being unjustly maligned.  still, if cat lady i must be, i shall wear the mantle well.
 i plan to spend the evening massaging dobby's bubbling belly, so as to release his angelic gases
causing him to sigh in simple pleasure. quick, cue up appalachian spring and that lovely shaker hymn... 

"and me, the chirp..."

The Marlinspike Hall gang is home from the wilds of the Lone Alp, where we did some x-treme camping.

Oh, okay, so "extreme" as it gets when hoisting and foisting all the livelong day with such a diverse (rapidly becoming my least favorite of the Progressive Vocabulary, soon to join such Coastal Suck Speech as "artisinal," and, maybe, "regional") crowd as The Castafiore, Cabana Boy the Unexpected Tenderfoot, Marlboro Man Wannabe Sven Feingold, Fred I-Can't-Leave-The-Fire's-Embers-Alone Vanderbuck, and me, The Chirp.

For the second time in elle est belle la seine's history, let me explain my use of "The Chirp." The first?  I had to look it up and it made me laugh so much I got sick. It's called, "Yay, Us!" Largely, it celebrates the wisdom of myself and Grader Boob in not procreating, in ending the line.  Of course, not everyone Born of the Blood was so pessimistic and our streak was ruined.  Still, "yay, us" for doing our darned level best.  Anyway, the previous reference to "The Chirp" came midst that family-fortifying affair known as the Casey Anthony trial down Florida way.  One day, exulting in my family's accomplishments, I wrote a friend:

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!

Believe it or not, the past few days have uncovered more reasons to ejaculate another "Yay, Us!" but the prospect of relaying the story makes me want to... you know, puke some more.  So we'll save the Weirditude of my "family" for better times.  I'll give you a hint, just enough to imperil my bleeding stomach:  an oil portrait of the Mother-Unit, kept hidden for over 30 years, presumably from the Nazis, now in my possession.  It's beautiful, she's lovely, and she's about to hit the Underground Railroad of Mother's Oil Portraits.

Back to "The Chirp."  It's a phrase from  Joni Mitchell's Miles of Aisles, her designation for her role in The Band -- in that case, L.A. Express, back during the Court and Spark tour.

That reference drew a weird amount of ink, and I wouldn't waste time explaining it again but for that irritating Urban Dictionary.  Their chirp is rarely a noun, and is as far from referencing my chirp as chirp can get.

So yeah, we're "home," though squatters we shall always be.

I'll talk more at you when the meds kick in, the ginger ale is sipped, and Dobby gets caught up on belly rubs.  I threw this vid/song in when composing "Yay, Us!" but mean it even more haphazardly now than I did then.

The Chirp:

The Webcast of Daisy Merrick's Memorial

Daisy's Memorial from Reality on Vimeo.


Courtesy of the Merrick's site, Pray for Daisy.

hiatus

we're all piling into ruby the honda cr-v -- as many as she'll allow -- and are off for some x-treme camping.

we'll see you later in the week!

check out the archives, why dontcha?

cheerios and fruitloops,

the marlinspike hall gang

she finally has a place all her own

I'd like to give a warm blogger's welcome -- oh, Lord, that sounds awful, like reheated, too thick, orangey cheese soup served over a chunk of brown bread, the pope's nose.

Let me try again.

Do you remember the many pleas made here and elsewhere on behalf of my friend Joyce and her husband Billy?  No?  Maybe?  Well, click HERE to refresh your memory.

Billy died, of course, which is what most people with Stage 4 lung cancer do, and Joyce has and will run the gamut of emotions in her grief, as most widows do.

She's full of stories.  They're just bubbling inside of her, trying to get out.

So she's started a blog.  She's called it: life, from childhood to adulthood.

Joyce is shy and sees herself as the product of an accumulation of bad, evil, and unlucky things. It is our job, Dear Readership, to show her a world of welcoming, to encourage her voice, and to respond to what she says -- or she might give up.

Actually, Friends, she will try to cut and run, write and delete, start and then declare it a failure.  So tell her about the day you realized that you had actually written a hundred posts, that writing regularly filled a void, and introduced you to people you'd otherwise never have met.  Tell her about the day you realized you had a voice, and that it mattered.

Just by virtue of having cats, and cute ones, at that, she's gonna have a certain following.  Dobby's ears are already rotating.

I've been learning a lot about writing lately and at the most unlikely of places -- a website for writers.  I already have a stalker there, a read idjit who calls himself -- get this! -- "amicus." I'd laugh out loud but my throat is raw.  It's a slice of real life -- some people are mean, some stupid, some open-hearted, some closed.  There's a whole lot of failed genius seeking comfort.  And vanity?  And vanity press ads?  Oy!

I'm having a great time.

Which is what I wish for Ms. Joyce Thang over there at life, from childhood to adulthood.  I joke about wanting her to write, not so much about the things that have happened in that lifetime, but what and whom she's seen, why she loves old cars, what is it about the thick blood of family?

I joke because if she tells her story -- life, from childhood to adulthood -- I am not sure we could take it.  So yes, may it all come out, but gently, layered between stories of the hills, revival tales, and character studies.  But it must come out, I imagine.  All of the hurt done to her needs its telling, too.

So make her not scared, not nervous -- but welcome.  She finally has a place all her own...

from Cindy Sheehan's Soapbox

Fallon and Obama, Jimmy and Michelle: Mom Dancing

"Forget the new hairdo. Michelle Obama’s most powerful bangs come from her hips."

]

uploaded by latenight to YouTube, February 22, 2013

In a ghastly pink cardy and pedal-pusher chinos, Fallon was having his own hair moment (was he channeling Tina Fey with that swingy brunette wig?) while unlocking a devastatingly creaky portrayal of self-conscious uncool. Then Michelle Obama swivels on, in her own cardy and, yes, pedal pushers–way spiffier, natch. But would she truly represent? You could hear a million Moms around the country fret. Then a few more beats, a few more hip bumps, and the Mom-in-Chief’s dance cred resolved into smooth, self-mocking genius.

i was, in short, diminished

This was written... lemme see... wow: 2 January 2010.  If you're a new Beloved Intrepid Reader, I am, as I was on 2 January 2010, stricken with the Dread Viral Crud, cannot sleep, and therefore feel compelled to raise whatever Dead Drafts that are not full of maggots or have worms playing pinochle on their unfinished snouts -- compelled, I say, to raise them from their Drafty Files into the light of day, or the lamplight of night, and where, O where, is the NyQuil?

There's some funny stuff hiding out in the draft pile.  What's not so funny is how things don't seem to change much around The Manor.  Remember, though:  You're never in a rut so long as you have a moat!  [C'mon, Intrepid Reader Darlings, 'Sing along!']

okie-dokie, so we are sick as dogs... although, where the meaning of that comes from, i dunno. dogs are not, by nature, "sick."

right?

in fact, i love dogs.  i am not, by nature, a cat person, no that lifestyle was foisted upon me.  (i just read that sentence out loud, and damned if i did not sound like w. c. fields. go ahead, try it, no one's listening.  especially that end part... "foisted uponnnnnnn meeeeee."

i love dogs so much i once left fred for three days on behalf of my mostly lab girl puppy, name of emma.  he was mean to her, and i had told him that were he mean to her ever again, i was leaving him.  so there we were, after midnight, me (using a walker), emma, an overfull suitcase, and a big plastic bag full of baby girl dog paraphernalia... and one pissed off taxi driver.

a friend who was in barcelona had offered me the use of his apartment.
on the fourth floor of a building with no elevators.
just me and my outraged sense of justice for my baby girl dog who was highstrung, needed lots of exercise, and had a bladder that a pea might envy.

you know how this story goes.  i managed three days, read all my friend's journals, all the secrets everyone had known for years, hurt myself in a dozen new and ingenious ways, but, by god, walked that dog five times a day, even took her to play in the park, but even emma was looking at me like, "why are we at alex's place?  why can't we go home?  don't worry about me, i can take on fred!"

we went home, but rather than force my baby girl dog to have to worry or fear anyone, i returned her to the animal shelter, and i pray every day that they did not take the light out of her eyes.  the days when fred can't figure out why the hell i am such a bitch?  those are my emma days.  god bless that pup. her brain could not seem to process any incoming data as being code for less than brightly dancing bubbles and slobber love.

this virus is cruel. it's a grown-up's virus.

i woke feeling pretty doggone (who let the dogs out?) good. no coughing. temp 98.4 (no shit! i almost called an ambulance... "make haste, there's something horribly amiss!").  just an aching head, with pesky swollen glands. for me? a big nada. no problem. gonna coast through the day, get some work done, mebbe write a little, do my wii, a french clay facial and if there is time left in the day, clean the bathroom. (we're having procastination issues).

i was looking forward to showing off for fred.  let him marvel at what recovery looks like, let him renew his faith, for it *is* possible to speak without a wheeze!  "how do you feeeeeellll, ffffred, dahlink?"

"moi? moi? i feel fuh-fuh-fine, ffffred!"

while waiting for fred to wake up, i did morning chores,
and began to lag.

yes, the energy did flag, and i, i began to fade.

i was, in short, diminished.

sorry. i was briefly channeling t. s. eliot.

or yeats.

it's so hard to tell, anymore. i grow old.

eating the peach is not gonna be my issue. no, i think that monster slinking toward jerusalem is gonna get moi.

hey, i bought a new toothbrush the other day! wait, i didn't tell you i went out, did i? well, i did. grocery shopping:

and i had an emotional meltdown right in the middle of the damned store. see... i hadn't left the house in 29 days. that's right. TWENTY-NINE FREAKING DAYS. that's how high my pain level has been, how miserable my legs, these hands, how very, very bad it has been. oh, poor me, yeah, yeah, and... SCENE!

anyway, i had been begging to go to the store for days, but fred didn't connect my eagerness with the notion of going-to-the-store with my pure excitement at what looked to me as a FUN activity. so when we entered said establishment and he announced, "let's split up, we'll get done faster"?
i started to boohoo. can you believe it? how retarded am i, and increasingly so, with increasing frequency? it was pure lucy mcgillicuddy ricardo, without the charm or talent.

poor man. in fred's mind, i go out whenever he does (pretty much daily, and at least twice a week for social engagements. he had not counted the passing of TWENTY-NINE FREAKING DAYS, nor did he really register the number of DIY amputations of my legs that i had undergone in fits of desperation at the increasingly increasing pain. he *cannot*, of course, and i don't want him to follow the bouncing ball of my suffering, anyway, poor soul. i've ruined his life enough, don't you think?  just trust me... he's told me so, twice in one week, once. with. a. period. between. each. word: and. when. are. you. going. to. die. anyway.

hard to transcribe.

oh, hell, where was i? did i tell you i am spiking a way high, a mile high fever?

the toothbrush. oh, yeah. so we were in the market, en train de faire le marché, when i remembered i needed a new one. i pop a few wheelies and race down the toothpaste, toothbrush, shampoo, deodorant, and sundries aisle. fred is tearing after me, the shopping cart careening this way and that... he sees me stop in front of the pitiable selection of plaque-scrapers, and calls out: "wait! we have a supply of new toothbrushes at home!"

now... i don't know exactly why that sent me over the edge (again) -- but it did. i had not been out of the house for... well, you know. do you get how hard it is to run a household by sending a guy with adhd to do the necessary errands? have you tried making a detailed grocery list when you are only able to go to the store yourself but a couple o'times a year? i am a very visual person. back in the day (i.e., before osteomyelitis, crps, before lupus and avn, before ai, and so on), i just took a mental stroll down the aisles, pictured what was there, made my lists in almost perfect synchronicity with the actual order of the products. i made a killer list, detailed but simple, a list on which even the most shopping-challenged could rely.

no more. oh no. now i am liable to hand my sweet abstracted man something in a breezy handwriting along the order of:

apples, if they are under $1.39 a pound. and fresh. also, please don't buy them if the skin is even slightly loosened from the inner fruit. you know what i mean. like they'd been stored in a cold bin for too long. we're looking for très fresh.  don't buy one without a stem, don't buy them if they're dimpled.  smell them, for god's sake.  didn't i see perfectly deep crimson delicious reds for $1.19?' 

keep an eye out for endive. gots to have my endive.  and one day, god willing, i will. 

toilet paper.  i don't remember this week's criteria. 

pasta, wanna try some whole-wheat penne? 

lowfat plain yogurt (7) as in SEVEN 16 ounce containers.  please do not confuse the flower on the carton of the nonfat yogurt with the vanilla flower the idjits place on the lowfat.  someone should write a letter, and yes, there oughta be a law. 

stool softener (i'm sorry) -- docusate sodium, the largest bottle they have, should be a 400-count for about 18 blessed buckaroos. 

drain cleaner

get yourself something for snacking

bananas, pears 

muesli 

12-oz cans of diced tomatoes, no salt, no sugar, nothing added 

kibble  

         basmati, whole brown, jasmine rices

that everyday spray cleaner with vinegar as its only active ingredient.  i like it. do you like it? 

oils, of all kind. we are almost out of everything from sesame to peanut to olive. did you think that last bottle of olive oil was funny colored, very bland -- old -- tasting? 

diet ginger ale 

your purple sodas 

my bread; your breads. 

i love you for doing this, i so wish i could do it for you...                                                                                   

"I slept in two hootches two stories tall..."

My Dad died last July 3, and I cobbled all of the below together on July 5, and whatever it is, it isn't my usual.  It's a classroom report, something to cut and paste on those posterboard set ups they sell kids who have a presentation to make.  It's pure as gold and it's pure crap, both.  Anyway, it's draft clean-up time again, probably the quickest road to fallen pride, if not humility, that I know.

"Better late than never, though there's nothing much wrong with 'never,' really..."
-- My Family Creed

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

G'morning, Faithful Readers.  Probably one of the most important, or influential, times of my father's life was as a co-commander of a base in Viet Nam.  We'll call it PRAB because that's what they called it.  I know only a few things about what happened to him and to his men and to his enemies and to the civilians he overflew there, and these memories are filtered through a kid's desperate desire to not understand, so I'm posting, instead, photos from that time and place.

Also, I found a neat archive of a guestbook where USAF personnel stationed at PRAB left a word or two.  It's a place of considerable understatement, which jives with my lifelong experience with The Colonel.  You had but to look in his eyes -- and who could do that for longer than two seconds? -- to see that he would never ever speak to you, or anyone, about what happened to him and to his men and to his enemies and to the civilians he overflew there.  Anyway, I do know that we heard some FUNNY stories about purported antics committed by Our Colonel.  A few were corroborated with photography, some with involontary snorting, and there are a few that I think were just made up.  It's apparent from the entries at the online guestbook that humor was a Saving Grace.


My biggest challenges were getting 
throttle actuators for the J-85s and Type II cleaning
solvent for docks so they could clean the R2800s.
Depot never could get the actuators and they
finally broke the solvent problem by getting it in
Singapore instead of a stateside depot. Also, we
had quite a time getting straight brooms so the
crew chiefs could clean out the cargo bays after
hauling elephants, nauseous native personnel and
leaking diesel fuel bladders. Flashlight
batteries were a problem as were the cargo
rollers. Other than that, a piece of cake.

shop area at PRAB

My first night on base was the night we 
had a mortar, rocket and sapper attack. A bomb 
loaded F-100 was hit below the tower and tower
personnel could be heard on Giant Voice telling
someone to get them out of there. The next
morning at Security Police building, all the
failed sappers were laid out for photographers
to take their pictures. Not a good night for
Charlie. As I remember, a K-9 alerted to the
attack before Charlie could make it to the 

flight line.

Panoramic PRAB

I volunteered to go to Vietnam. I
believed it 

was my duty and the least I could do. 

I met a 

great bunch of guys that loved to drink J.B. I
lived on cans of pineapple slices because I was
always hungry. Worked on the F-100's and the F-
4c's. I loved the Aussie B-47's especially when
they started up with the cartridges. Really cool
looking. I have some old slides of the guys and
the field. Remember hitch hiking and taking the
bus down town and getting some barbequed dog.
Really tasty. lol..

 Movie theater area. Movie Projector shack is
on the left. Movies were projected onto the side wall of the
inflatable warehouse. 

 I was crew chief on F-100D 56-2911. 

Had "Ding How" painted on the nose. It was the 
Sq. C.O. acft "Buzz Sawyer". We lived in tents, moved

into hooches and wooden barracks were being

built just before I left. 

I painted several sleds with 

nose art. Sure 

wish there were pics of them now. 

Often wonder 

where the old aircraft went and 

all the guys that 

crewed them. Its been so long now. 

All the pics 

I had from that era have been lost but sites like

this bring back so many memories....

I retired in 79 and went to the wilds of Maine

where I could enjoy mountains, four seasons,

trees, wildlife and escape the roar of the J-57.

Phan Rang is actually composed of twin towns; Phan Rang and Thap Cham. It is a small town on the coast with its main attraction being Cham historical remnants and towers in the surrounding area. The Cham Empire thrived in and around Phan Rang from around the 8th century its fall in the 17th century. The Phan Rang region is very dry, as it manages to avoid the summer and winter monsoons. It averages only 60cm of rain per year. The immediate area around Phan Rang is very beautiful and is interspersed with grape gardens and is the home of the best dragon fruit in Vietnam.

The main attraction in Phan Rang is a small group of Cham towers which sit by the roadside 7 km on the road to Dalat. These towers were built in the early 14th century as Hindu temples during the Cham Empire. They have been beautifully preserved. The towers were named after the King who invented a system of irrigation used in local villages. As the tourist buses from Nha Trang to Dalat pass through Phan Rang, the Cham towers are seen as a convenient place to take a break along the way. The result of which is that the towers are periodically swarmed by travelers heading north and south. In the center of the largest temple is an ancient linga (phallic symbol) with a human face painted on it. The other towers still retain their beautiful shapes and the carved details are clearly visible.

1000 lb bombs ready for loading

I remember when we were infiltrated in Jan and 

then in Feb 69 by CHARLIE. If I remember

correctly an F-100 and a B-57 were damaged.
The Super-cops shot I think 11 VC and then
displayed them in the parking lot in front of
the BX. One VC was a barber who used to cut my
hair at the barber shop.

"Viet Nam Baby Lift," Wayne Day

I was an aircraft Loadmaster on the 
Bookie Birds. I arrived from Travis AFB, CA where I flew 
on C-141s and after leaving Phan Rang went to
McGuire AFB, NJ, back on C-141s. Went back to
Travis in 73 and retired in 76.
Lot of memories GOOD & BAD. Few scary occasions. 
Always looked for and counted bullet holes upon 
landing back at Phan Rang.

Members of No. 2 Squadron’s Australian Airfield Defence Guard (ADG)
prepare to fire on suspicious movement while on patrol outside the perimeter
of the base at Phan Rang in 1969.

 I slept in two hootches two stories tall no air conditioning
in a 2 man room. Next moved to new 35 AMS
Sqadron hootch 20 rooms open floor plan 2 people
per cubicle that if you slept in the top bunk and
jumped out of bed you hit the two lockers that
were a part of the room. Where was the air
conditioned 2, 4 and 6 man rooms...hmmm? Dusty
yes NCO club yes, Airmens club was pitiful.
Entry to down town Phan Rang banned so Dodge
City was the primary choice of recreation to the
Airmen. Mayor of Phang Rang was the reason for
banning visiting the city do to Pathet Lao,
Chicom and NVA activity in the area. Someone
asked the question someplace about getting hit
with rockets and mortars. 1969 Phan Rang by
number not volume beat out Da Nang meaning we had
more weapons dropped on us than they did and I
can testify to that in that working graveyard
shift a month didn't go buy where I didn't find
myself in the bunker next to the 35 AMS building.
One last thing the 3rd snack bar was next to the
hanger across the street from the AMS building
had the worst hamburgers in the world. After 6
weeks and Mess Hall food they tasted pretty
good!

When Dad had things he thought were "heavy" to explain, I was always summoned to the Master Bedroom, my stepmom usually intensely, obsessively engaged in the application of moisturizer to her face, neck, arms, and legs.  We were supposed to pretend she was not there. And so we did.

He asked me if I knew the story of Washington crossing the Delaware, and though I did not (I could, however, reference several paintings of that watery passage, with Washington idiotically standing upright in what looked to me like a rowboat) -- I nodded an assent.  Then came the brilliant segue, that to this day leaves me aghast and close to drooling:  "Well, what if no one had volunteered to row the boat?"

That was his way of explaining that he'd been assigned to go to Vietnam.

The emphasis on volunteerism was a nice touch, especially since he certainly owed no service time to that war, having flown in it and around it for many years already.  And especially since he fought his superiors tooth-and-nail in an effort to get them to tally his air time over Vietnam, Cambodia, and Laos and *then* dare to tell him he owed a year "in country."  Didn't flying "hospital" planes, heavy lunky dumpy planes, didn't flying the wounded out to Clark AFB for medical minsitrations count for something -- flying low, flying invisible, in one of the heaviest planes in the world -- so deft a touch, so one with the mission, keeping it light so the nurses would not scare, an Albert Schweitzer of the air -- was that all for naught?


The year and a few months that he was gone were the best years of my fucked-up family's life, and I felt ashamed for every day that I was happy.


The day that he came home, I broke my stepsister's hair dryer, and was so afraid of starting out his return in trouble that I gooped it back together with some inappropriate glue and when it wouldn't stick, I hid it.  When my StepMom drove the car into the driveway, and we all stood there, in a line, waiting, mourning our days of freedom fun, all I could think was "I broke her hair dryer and now I'm going to get in trouble." Look in the eyes, and bullet understatement trouble.


What you don't understand is that I was never forgiven for anything I ever did wrong. Never. Not for a broken hair dryer, for not eating my eggs, or for the most horrible sin you can imagine.  Wrong was wrong, and wrong was not forgiven.


When he got out of the car, he looked like he needed us.


His head was shrunken, all bone, all old. His eyes looked too big for that shriveled face.  And his voice cracked.  "I'm home," he said, his voice cracking, and he cried.

what is and what is not

I'm struggling these days with what is my responsibility and what is not.

Am I my brothers' keeper?  Yes, and my sisters' keeper, too, though sisters have uteri and we all know that complicates matters.

Am I responsible, personally and in my life as a citizen, for my brothers' and sisters' repeated mistakes?  No.  Only for the first, oh, I dunno, six?  Sure.  Six.

Am I responsible for responsibly arguing my case in the face of despotic hate?  Yes.

What about plain old everyday I-hate-your-guts {spit::spit} hate?  Yes.  And no spitting back in private, either.

Am I responsible for maintaining my rationality at all cost, despite the piling on of fast lies and ignorant assertions -- in all cases, or only in cases where the verbiage has an ill-prepared and gullible audience?  Yes, and yes, in all the cases, no matter how it breaks my heart.

Heartbreak is no excuse for anything.

Am I responsible for keeping my heartbreak to myself, as the world is over-burdened with those refrains?  I think "yes," and I do otherwise.

Heartbreak is no excuse, but it is.  So I try harder.

Am I responsible for learning something every day, or however many years it takes, some things being mercurial, some things in constant evolution, revolution?  ["Yes, but you are also responsible for your own mercurial nature, your own whirligigs of revolutions, and for how things change," says Stern Me to Me-Eyeballing-The-Exits.]

Am I responsible for rushing, laughing, excited, to share it with you?  No.

Am I responsible for listening, fascinated, laughing, and excited -- eyes a-gleaming, when you run to me to share your new-found, new-learned thing?  Yes, yes, yes, I am.

Am I responsible for taking your inventory?  No.  But I do it anyway.  Guffaw!

Am I responsible for being as Seussian as possible, whenever possible?  Yes, as are we all.

Am I responsible for the Earth, the Moon, the Stars, and all the jazz?  Probably, as we are all Seussian, and Planetary Citizens -- both -- grooving to the beat, the beat, the beat.

But I'm not reponsible for your happiness, only for doing my best not to ever pose as its obstacle, only for ever cheering it on.

So how did this become "my" side, and that, "yours"?

PLoS and Open Access: Research is finally getting sexy

open access logo
ripped off from PLoS ONE, Open Access, and the Futureof Scholarly Publishing

Just assuming that CRPS was more of an orphan disease this year than last, I had not noticed that my MedWorm feed results were no longer arriving. Either MedWorm has gone kaput or they're renovating, but there's been nary a word of CRPS happenings since very early in January.

So while they sort that out, I'll just do the oh-so-hard work of plugging in a few terms into the Entrez cross-database search engine at NCBI. Excuse me while I wipe the sweat from my brow.

And puh-leeze, if you're tech savvy enough to search out blogs 'n such, you're plenty capable of sorting through a couple of hundred articles and thousands of abstracts to find *exactly* that aspect of CRPS you're researching.

So here is a link, an exciting one, to PMC's (that's PubMed Central, part of the US National Library of Medicine, National Institutes of Health) current listing of 719 articles "about" CRPS that are available FREE, online.  You know how I feel about FREE!

----->> PubMed Central: free, full text journal articles -- and please note that I did a simple, one-item search.  You'll be richly rewarded the more you hone your search terms, though it does help to "go large," and then narrow down.

Just to share a bit of what you can expect as a reward, the first article that pops up is titled "Complex Interaction of Sensory and Motor Signs and Symptoms in Chronic CRPS," and its introduction is very layperson friendly:

Complex Regional Pain Syndrome (CRPS), mostly regarded as a neuropathic pain disorder, is typically evolving after a minor trauma of the limb [1]. Besides pain, CRPS displays a multifaceted clinical pattern consisting of vaso- and sudomotor changes, as well as trophic and motor disturbances, edema and somatosensory changes [2]. In consequence, many patients sustain impairments of hand function persisting even many years after the initial trauma [3]. The clinical presentation, and therefore the criteria leading to the diagnosis of CRPS, are mostly applied to patients with recently emerging, “acute” CRPS [1], [4]. Much less is known about the occurrence of the respective signs and symptoms when the initial phase of the disease subsides. Furthermore, the underlying pathophysiology of CRPS is still under debate [5]. Some authors stress the role of peripheral pathomechanisms, namely peripheral neurogenic inflammation and small fiber axonal degeneration [6], [7]. In addition, autoimmune dysfunction seems to be involved in CRPS pathomechanisms [8]. Contrariwise, a distinguished body of literature supports the involvement of the central nervous system in terms of sensory as well as motor adaptive changes[9], [10]. More generally, the level of accompanying chronic stress and depression might also account for somatosensory changes and the level of ongoing or evoked pain particularly in chronic pain patients[11], [12]. However, the degree of stress and depression in patients with chronic CRPS is not well characterized. Recently, it has been suggested that the pathophysiological mechanisms of CRPS follow a distinct time course, with a preponderance of peripheral inflammation and beginning of small fiber degeneration in the acute phase, and progression of small fiber degeneration as well as central pathomechanisms dominating the chronic phase of the disease [13]. It is still unclear to which degree the underlying pathophysiological mechanisms predict the clinical presentation of CRPS and the resulting outcome of the disease, although recent studies suggest an interdependency between the clinical presentation, the underlying pathophysiology and possible consequences in terms of resulting impairments. Namely, differences in skin temperature might facilitate the discrimination between an ongoing peripheral or central pathophysiology. [14]. So far, many clinical studies focused on the characterization of different specific aspects of the disease, for example the degree of neurological changes or the description of motor impairments [15], [16]. Furthermore, many studies mixed patients with short duration of the disease with those suffering from chronic CRPS. Up to now, a comprehensive survey linking quantitative sensory changes to CRPS symptomatology and the degree of resulting impairment is still unavailable for patients with chronic CRPS. In order to expand the knowledge of clinical characteristics of chronic CRPS and the level of concomitant stress and depression, as well as to characterize the degree of resulting hand impairment and disability, this study was performed.

Published by PLoS ONE, the entire text is there.

And now a word about PLoS ONE, and why these things get me so excited, and if you are a citizen trying to advocate for yourself or a loved one, trying to help your health care professionals out when dealing with an obscure disease, or at least, a non-sexy and underfunded one, why you should be supportive of them and excited, too!

Posted on February 14, 2013 by David Knutson  

PLOS applauds the efforts of legislation sponsors Sens. Cornyn (R-TX), and Wyden (D-OR) and Rep. Doyle (D-PA), Yoder (R-KS) and Lofgren (D-CA) with the introduction of bipartisan and bicameral legislation that will maximize the impact of federally funded research. The Fair Access to Science and Technology Research act (FASTR) act states: 

”The US has a substantial interest in maximizing the impact and utility of the research it funds by enabling a wide range of reuses of the peer-reviewed literature that reports the results of such research, including by enabling computational analysis by state-of-art technology. 

The Federal Government funds basic and applied research with the expectation that new ideas and discoveries that result from the research, if shared and effectively disseminated, will advance science and improve the lives and welfare of people in the US and around the world.  The internet makes it possible for this information to be promptly available to every scientist, physician, educator and citizens at home, in school, or in a library” 

Increasing access to research outputs delivers benefits for the economy, for medical patients, for innovators and for the general public. In Tuesday’s State of the Union Speech President Barack Obama referenced the Human Genome Project, which has generated both good science and $141 dollars returned for every dollar spent. In addition, one of President Obama’s distinguished guests was Jack Andraka, a high school sophomore, who won the 2012 Intel International Science and Engineering Fair for his creation of a new method to detect early-stage pancreatic cancer. His discovery was made possible by using the research outputs he could access freely online. 

We are seeing a proliferation of increased access, from new journals to new guidelines and legislation. In the UK, PLOS strongly supports the efforts of the UK Government and Research Councils to increase access to publicly funded research. We applaud the development and implementation of policies in Ireland, Denmark, Argentina, Australia and in the European Union. We stand firmly alongside any organization or initiative that attempts to eliminate unnecessary barriers to the immediate availability, access and use of research, and we look forward to working with them in the journey towards full Open Access. 

We invite you to join us in the PLOS mission to lead a transformation in research communication for the benefit of all. We urge you to call, write or email your congressional representative and express your support for FASTR. Click here to read the Fair Access to Science and Technology Research Act.

Bipartisan, bicameral legislation, oh, excusez-moi, I've got the shivers!  If you have CRPS or any other underfunded, under-researched, and terribly depressing disease that makes you search for help and hope online at 3 AM, then support this legislation, and work to free up information.  Take a measure of control back!

Strike a blow for Quality of Life!  QOL!  ADL!  PDQ!  ASAP!  QID!  NPO!  Download and print a copy of the legislation and use it as the basis for some incredibly painful but life-affirming bit of physical therapy.  I dunno, practice turning the pages, one by one.  Lift it over your head.  Drop it and pick it up.  Throw it at some lazy, whiny person! {::ducking::} Woo hoo, life is grand!

Well, it probably shows -- I'm feeling rotten and pretending it just ain't so.  As in, seriously rotten, should probably head for the hospital rotten.  But I'm trying, also, to stick to The Plan -- minimal interventions, just putting out the 3-alarm fires, and letting this bleeping infection in my bones and the CRPS take their course.  It's a hard habit to break, wanting to call for help for every crisis.  

This is where my well-known zen-like, calm and centered self comes into play.

Oh, shut up.  I can try!

Daisy Love Merrick's Memorial Information

ALL INFORMATION FROM THE PRAY FOR DAISY BLOG:

Daisy’s Memorial Info

Date: Saturday, February 23
Place: Reality Santa Barbara (At the Santa Barbara City College Sports Pavilion)
Time: 3 pm
Attire: See words below from Kate
Webcast: Daisy had many friends and supporters around the world for which we are so thankful. In order to honor these relationships we will be streaming her memorial live. Tune in at Pray For Daisy to watch it.


A few words from Kate:

Dear Friends…

Early Saturday morning we had the privilege of witnessing Daisy’s departure from earth to a place outside of time and space where her joy is complete: heaven.

Our darling girl gave us kisses at midnight, with lips dry from thirst and hot with fever.  Tiny and sweet, the words “that’s awesome” came from her tired body after letting us know she was having good dreams. She is safely home… Finally well.

I have refrained from giving details of her suffering over the last few weeks, as it was immense.  Out of respect for her dignity and loveliness we have been keeping these painful moments sacred.

Thank you for your partnership in loving our girl. Please know we are broken hearted for ourselves but so happy for Daisy, who is with Jesus in paradise able to run and eat and play with abandon. We believe that wholeheartedly, and as they say in Narnia, she is going further up! And further in!  She left the Shadowlands for a place more real in every sense.

Please join us as we celebrate the strong, kind, brave, goofy, thoughtful, amazing girl we call Daisy Love. Please wear what you feel best in; sandy feet and boardshorts, tutu and snorkel mask, or the prettiest dress in your closet. Wear black only if you must, but I’m wearing what Daisy would like most.  On her last night on earth, she requested we watch “The Hobbit” (70’s version) and dress like hobbits.  If ever there was a girl confident in her own skin, it was her.  Among her favorite ensembles are animal ears of all kinds, astronaut, flightsuit, monster, pirate, dinosaur, Indian, mermaid, bear, cowgirl, fireman and explorer.

Feel free to laugh and cry and hug. There is no single way to grieve. And while we miss her on earth, we will pick up where we left off when I have the privilege of going to where she is, in the presence of God where there is fullness of joy.

My final request to all who read this blog: love. Love your babies, your husbands, mothers, sisters. Love each day like it’s your last. All you mamas out there, you have been entrusted with the precious gift of a human life who depends on you. Enjoy your gift. Breathe in the scent of your child’s hair, breath. Let them cook with you and make a mess of the kitchen. Play hide and seek with them, build sand castles with them, take them on picnics, read to them!  Listen to them, value and respect them, never shame them.  Your words they will carry with them their whole life and you have the power to give them wings or stunt their growth. Motherhood can be tough but it’s worth it. It can be exhausting, boring, tedious, but never for long. You blink and they’re grown. It has been my honor and privilege to love Daisy these last 8 years. I’m thankful for every minute; the joyful and the terrible alike.

“I know The Lord is always with me. I will not be shaken, for He is right beside me. No wonder my heart is glad, and I rejoice. My body rests in safety. For you will not leave my soul among the dead or allow your holy one to rot in the grave. You will show me the way of life, granting me the joy of your presence and the pleasures of living with you forever.” (Psalm 16:8-11 NLT)