"And the live show is still our main thing": HAPPY BIRTHDAY, OCCUPY!

OWS One Year Later, Time World
On Sept. 17, 2011, members of Occupy Wall Street (OWS) started camping out in Zuccotti Park in Manhattan’s financial district, and since then the movement has spread to 1,500 cities. One of its most enduring icons has been the Guy Fawkes mask, popularized by the graphic novel and film V for Vendetta and a constant presence at protests worldwide.

If we had any nerve at all, if we had any real balls as a society, or whatever you need, whatever quality you need, real character, we would make an effort to really address the wrongs in this society, righteously.

I read somewhere that 77 per cent of all the mentally ill live in poverty. Actually, I'm more intrigued by the 23 per cent who are apparently doing quite well for themselves.

Constantly choosing the lesser of two evils is still choosing evil.

Stuff that's hidden and murky and ambiguous is scary because you don't know what it does.

And the live show is still our main thing.

-- Jerry Garcia






Uploaded by scottmcfann on Oct 17, 2011   Creative commons Non-Commercial, Attribution, No Derivative Works license. 
Music by: Hauschka, song "Stumm (Kein Wort)"
Music Label: Karaoke Kalk label based in Berlin
http://www.karaokekalk.de/

A Ulysses Kind of Day

Penelope and Odysseus
Relief, from Milo, c.450 BC (stone)
Louvre, Paris

Every now and then, I have a Ulysses kind of day.  Of course, those pixies at the DNC started it all with their video honoring Ted Kennedy, who loved to muck around with Tennyson's Ulysses (below).

Always, though, I end with Merwin's Odysseus, when my heart's strings can withstand the tug (below, below).

Alfred,Lord Tennyson : Ulysses

It little profits that an idle king1, By this still hearth, among these barren crags, Matched with an agèd wife, I mete and dole Unequal laws unto a savage race, That hoard, and sleep, and feed, and know not me. I cannot rest from travel: I will drink Life to the lees: all times I have enjoyed Greatly, have suffered greatly, both with those That loved me, and alone; on shore, and when Through scudding drifts the rainy Hyades2 Vexed the dim sea: I am become a name; For always roaming with a hungry heart Much have I seen and known; cities of men And manners, climates, councils, governments, Myself not least, but honoured of them all; And drunk delight of battle with my peers, Far on the ringing plains of windy Troy3. I am a part of all that I have met; Yet all experience is an arch wherethrough Gleams that untravelled world, whose margin fades For ever and for ever when I move. How dull it is to pause, to make an end, To rust unburnished, not to shine in use! As though to breathe were life. Life piled on life Were all too little, and of one to me Little remains: but every hour is saved From that eternal silence, something more, A bringer of new things; and vile it were For some three suns to store and hoard myself, And this grey spirit yearning in desire To follow knowledge like a sinking star, Beyond the utmost bound of human thought. This my son, mine own Telemachus, To whom I leave the sceptre and the isle— Well-loved of me, discerning to fulfil This labour, by slow prudence to make mild A rugged people, and through soft degrees Subdue them to the useful and the good. Most blameless is he, centred in the sphere Of common duties, decent not to fail In offices of tenderness, and pay Meet adoration to my household gods, When I am gone. He works his work, I mine. There lies the port; the vessel puffs her sail: There gloom the dark broad seas. My mariners, Souls that have toiled, and wrought, and thought with me— That ever with a frolic welcome took The thunder and the sunshine, and opposed Free hearts, free foreheads—you and I are old; Old age hath yet his honour and his toil; Death closes all: but something ere the end, Some work of noble note, may yet be done, Not unbecoming men that strove with Gods. The lights begin to twinkle from the rocks: The long day wanes: the slow moon climbs: the deep Moans round with many voices. Come, my friends, 'Tis not too late to seek a newer world. Push off, and sitting well in order smite The sounding furrows; for my purpose holds To sail beyond the sunset, and the baths Of all the western stars, until I die. It may be that the gulfs will wash us down: It may be we shall touch the Happy Isles4, And see the great Achilles5, whom we knew Though much is taken, much abides; and though We are not now that strength which in old days Moved earth and heaven; that which we are, we are; One equal temper of heroic hearts, Made weak by time and fate, but strong in will To strive, to seek, to find, and not to yield.

Alfred,Lord Tennyson (1809-1892) 1833

FOOTNOTES

1 In this poem, Ulysses (the Roman for Odysseus and the hero of Homer's Iliad and the Odyssey), now an old man, having returned to Ithaca after twenty years absence and much adventure, has grown restless, and is now contemplating setting out with his crew again; 2 a constellation of stars associated with rain; 3 site of the Trojan wars of which Ulysses was a hero; 4 the Elysian Fields, believed by some to be the resting place of heroes after death; 5 Greek hero of the Trojan wars who suffered an early death

Ruthlessly stolen from:



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Uploaded by hartistry on Oct 24, 2009
David Hart is *remarkable*....

“Odysseus”

Always the setting forth was the same,
Same sea, same dangers waiting for him
As though he had got nowhere but older.
Behind him on the receding shore
The identical reproaches, and somewhere
Out before him, the unravelling patience
He was wedded to.  There were the islands
Each with its woman and twining welcome
To be navigated, and one to call “home.”
The knowledge of all that he betrayed
Grew till it was the same whether he stayed
Or went.  Therefore he went.  And what wonder
If sometimes he could not remember
Which was the one who wished on his departure
Perils that he could never sail through,
And which, improbable, remote, and true,
Was the one he kept sailing home to?

By: W.S.Merwin 

I love Dr. Anthony Kirkpatrick and it turns out that Ochoa is not the only turd in town...

Dr. Anthony Kirkpatrick has pretty much dedicated his life to bettering the lives of people with CRPS / RSD, and having scoped out some of his other interests, he's kind of into bettering life on the planet, in general.

After many years in Anesthesiology and Pain Management at USF in Tampa, he established there the world's only RSD / CRPS Treatment Center and Research Institute.  If I had some bucks, I'd have been there when the doors opened.

[One of the majorly sucky things about CRPS / RSD 's most effective doctors and treatments?  You have to be monied to have access to them.  Oh, I'm sorry.  That's a universal truth!  I try to expunge the obvious from my posts, but it was a long night...]

I'm also not blind to the down side of such fervor as his, but I prefer it to torpor, and I definitely prefer it to doctors practicing CYA medicine or suffering terribly from Dr. God complexes.  I see him as the obvious antithesis to my archenemy Jose Ochoa, known on this blog simply, eloquently, as The Turd.

Anyway, here is a new Dr. Anthony Kirkpatrick video meant to expose, inform, and help:



Part 2 cannot be embedded, but here is the link to it:  Part II: Do doctors torture patients with CRPS?
Part 3 cannot be embedded, either:  Part III: Do Doctors Torture Patients?

Dear President Obama...

Mr. President:

I learn something new every day.

I'm one of your avid supporters, President Obama, and someone who has benefited enormously, albeit catastrophically, from the Affordable Care Act, most specifically the Pre-Existing Coverage that was made available for me to purchase.  (An aside -- in your campaigning, it would help people to understand PCIP better if they knew that it was not "welfare," that enrollees pay their way.  However, I confess to having blown, all by myself, the national budget for this program, and it is only September!)

I'd be even more avid in my support if you'd push for real and true reform in your next term in office.  That's right -- the public option, true universal coverage, deep, real reform.

But there is also in me a conservative streak, though I prefer to consider it basic common sense.

The medical details are irrelevant in this story of abuse of the health care payment system:  On July 10, 2012, I required emergency transportation from a doctors' building to the emergency room of the hospital across the street.  Well, to call it a "street" is a stretch, since it was more like an alley.

There was no need, as there was no time, for even the taking of basic vital signs, no i.v.s started, nothing. They just put me on the stretcher, took the elevator down to the ambulance, loaded me into it, crossed the alley, and delivered me to the emergency room.  In the interim, they managed to muck up information such as the office we had come from and the reason for the emergency transport.  (The guys said "dislocated shoulder";  In actuality, it was sepsis.)

Because I have passed the catastrophic limit for the year, most of my medical charges are being paid at 100% by PCIP -- for which you have my deepest gratitude.

I still make it a habit, however, to peruse each and every Explanation of Benefits form that comes my way, and there are some almost every day.  It's been that kind of decade.

The EOB for the ambulance ride arrived in today's mail.  PCIP payed them a whopping $963.00, exactly what they billed.

I thought about ignoring it.  Why should I care?  I'm at 100% coverage, my health is "catastrophic," and I had just spent two hours convincing a radiology practice that they would likely get paid if they would file with PCIP and not the insurance company I had four years ago.  But, still, I found myself reaching for the phone.

The first two times I dialed and explained why I was calling, my call was disconnected during the complicated transfer to the billing department.  The third time, I think the Obama-like steel in my voice made the call go through like magic.

I discovered that a nifty way to inflate an ambulance charge is to alter the address of origin for the "pick-up" or rescue, or whatever they choose to call it.  The Big Ride.

My home address was "inadvertently" listed as the originating point of the ambulance ride across the alley. My home address, of course, is in a different city -- not too far away, but still...

Call me a cynic, or nuts (though you'll not catch me conversing with an empty chair), but I suspect this inadvertent confusion of addresses happens with some frequency among the shadier members of the rescue community.  I suggest that anyone taking The Big Ride and facing a huge bill as a result obtain the paperwork designating starting and ending points.

They're going to "investigate" my claim.  I asked them to please reimburse a goodly amount of that charge to PCIP.  I'm doing what I can, President Obama!

I hope your ribs are okay -- I saw that tremendous bear hug you got at the pizzeria this morning!  Good thing you didn't need an ambulance!

Your supporter,
Profderien

Manor Keeping and Blog Chores

There are so many housekeeping chores that need doing to get this blog back in shape.

I promised to follow three things in particular -- news and developments about missing child Lindsey Baum; news and developments about Dr. Scott Reuben; and updated information on CRPS Clinical Trials.

Now, of course, I would add the four cancer kids that I follow, as well as the continuing truth that Dr. Jose Ochoa is a Turd.

And then, well, there is my fascinated hatred for creatures like Dr. Phil and Oprah, and my desire to wrench others away from their mesmerizing bullshit.  These are people of quality who just refuse to trust themselves, who have a tendency to love being on the receiving end of domination.  (What?  It's only the truth.  Domination, even cruelty, equals attention, and they have been denied attention their whole lives.  All they want is to be seen and heard -- no matter that they are being used, pimped, fucked.)

Of course, dealing with osteomyelitis and CRPS (the biggies) has completely taken over elle est belle la seine la seine elle est belle, whether I allow a safari vacation into Amerikan politics, French politics, socialist circles, or even the wild and woolly adventures we have in the various kitchens of Marlinspike Hall. My pus-dripping bones and my wildly contorting legs and hands trump the hell out of the Militant Lesbian Existentialist Feminists, even the three of them who'd switch teams in a New York minute if it meant they could hunker down with my oblivious Fred.  I did not fall off of the produce truck recently and although I was born at night, they had to use pitocin.

I've put life in The Manor and the many fascinating details of maintaining such a landmark on the blog's back burner, too, but, O! There are reasons for that and fear not, as soon as we are covered by the expected extensions of President Obama's Dream Act to us outlanders, Tante Louise will call off the surveillance.. Okay, so we're not young, but we are illegal, and we are immigrants.

We are squatters!

La Bonne et Belle Bianca Castafiore is so head-over-heels in lust with Sven, and they both are steadfastly and stealthily kept in view by Sven's lad Cabana Boy -- and to tell the truth, this has killed some of my desire to write.  They keep the air redolent with stinky tension.

I almost and by complete ACCIDENT killed myself yesterday -- by gentle respiratory depression.  Fentanyl patches, according to the manufacturer, are to be changed every 72 hours.  My pain guru wants me to change them every 48 hours.  I, of course, allow the earlier applied one to stay on an extra day, thereby milking out, or so I hope, every bit of pink-unicorn-fart pain relief.

The things do not stick well to my skin, mostly because I constantly cycle between being hot and dry, having sweats and chills.  Also, I bathe.  I bathe a lot.

Okay, this bothers me, so just let me get it out of my system, as if it were a bit of toxic fentanyl floating around in my psychic innards.  I love a bath.  I haven't been able to take a bath since... 2000.  I shower.  I use a shower chair and one of those wunnerful, wunnerful wand shower heads.  I leave the bathroom sobbing and usually have to take a rescue dose of endocet and climb in bed, praying and crying, snot all over the place, sweating, destroying that fresh, clean feeling a shower is supposed to impart.  Now, due to weakness and spasms, I shower twice a week.  I bathe at the bathroom sink twice a day, usually more often.  I use various antiseptic products, especially the ones that are commonly used as preop washes, trying to destroy any goddamn p. acnes bacteria hanging around.  I've been told this is a ridiculous thing to do, as well as impossible and perhaps undesirable... but I do it anyway.  I stomp on those toxic bastard bacteria.

Whew.  Okay.  Yeah, so bless my Stepmother who inculcated in me an obsession for cleanliness.  Captain Haddock sure gets his money's worth out of my hyperfocus -- there are no cleaner medieval tapestries than the ones hanging on his manor's walls.  I was born a maid.

Okay, let's reword that:  I was born with maid tendencies.  When I took career assessment testing in junior high school, the answer was always, "be a maid."

There are twisted ways that could have gone.  I clean up.  I believe I'd also have been a great assassin.  I used to maintain a list of People Who Need Killing -- but someone, somewhere, must have snagged a copy, because they all just sort of started dying without me doing a doggone thing.  And now, the world has changed so much, so quickly, that I am scared of making a mistake -- so no one has been added to the People Who Need Killing List since Pinochet died.  Six years of no entries.  A rusty assassin is a useless assassin.  Just ask Clint Eastwood, or the chair.

I spent the night screaming.  Pain. Muscle Deformations.  I kept dreaming that my Father, recently deceased, who had been dreamily safely ensconced in a federal prison, had been released and no one knew where he was.  I dreamt he was comin' after me.  Then I would wake to find my right leg jammed into the wheelchair, and my body turned on my left non-existent shoulder.  And so on and so forth.  I finally got up at 3 am, mad.  Mad at whom, I've no idea, but Fred was up, so I treated him to some of the door-slamming he so loves.  He didn't notice a thing, the benevolent abstraction!

So I decided to calm myself and quiet down the door banging by taking a shower.

At which time I discovered FOUR fentanyl patches, all firmly adhering to my skin.  All should have been neatly labelled with the day applied (I put a bandaid over them to help keep them on when the sweats and chills kick in, and write the application date onto the bandaid).

To the best of my muddled recollection, twice I thought the thing had fallen off, and so twice had replaced the supposedly missing pain patch with a new one.  And in each case, it was the bandaid that was gone, not the patch.  Yes, I had opened a new box of Made in the USA bandaids, a pharmacy brand that shall be henceforth banished from this usage, at least.

Yes, my eyes are that bad, also the patches are pretty much translucent.  I had been fretting about the cats, fearing that they'd find the fallen fentanyl "pain systems," lick them, play with them, and promptly die.  Sven, Bianca, and Cabana Boy?  They are more drinkers than druggies.  And Fred laughs at the idea that exposure to fentanyl could harm him.  I also had a good fret or two over the koi, thinking that maybe the patches went flying out some window and down into the moat.

We've banned the carnies and Cirque du Soleil habitués from entering The Manor, so I couldn't see how the true fierce addicts around me could have gotten hold of them -- and lately, they've all been confined to The Barn.  Long story.

Yeah, so I almost died, sorta.  I mean, I guess I could have.  I was certainly drowsy enough and snoring like a giraffe troubled by amplified adenoids -- before all the pain (despite four fentanyl patches) and contractions pushed me from the bed, to work, to a good sweat, to another shower.

The irony is that this week I am meeting with a lawyer to rework my living will, my standard will, my various powers of attorney, and seeking guidance on getting a DNR.

I can tell you that there is NO news about Lindsey Baum, that Scott Reuben chafes under the restrictions placed upon him (I'm sure it is a mystery to him why trust is so hard to come by), and if you want the latest CRPS clinical trials, it's easy -- just go HERE.  The only extra gifts I ever offered in my listings of the clinical trials were my not-so-expert opinions, and adding some suggested reading to better understand what was at stake.  But you, Dear Reader, don't require that.  It was more along the lines of me, as a high school sophomore, "showing my work" on a geometry test.  Yes, a "proof" of some kind.

Of the four young ones fighting cancer that I follow, Hannah is doing great, as is Kate (she shows no evidence of *any* tumor!), Braydon struggles, and the last young man will not live much longer.  I am also following a teenager, mostly because I saw her picture after she had died her hair a beautiful punk pink -- before losing it all, of course, by a new course of chemotherapy. She has relapsed but is kicking cancer's big fat butt by a punked out perky attitude, and by loving parents who never leave her side, and who pray all the live long day.  There are others -- you cannot help yourself, because the kids you follow all have blogging parents who do not cease to ask for your consideration for the kid in the room next door, or for so-and-so who has developed a nagging pain but whose MRI is not scheduled until October...  I can tell you that pediatric oncologists must have a healthy respect for parents and their "gut feelings," their intuition, their "something is not right with my child." In short, my cancer kids are doing better, as a group, than they usually are, and they are inspiring and uplifting, each and every one.

I posted a piece called "Billy" on September 5.  He's not a cancer kid, he's a cancer grown-up!  He has stage 4 lung cancer, and I will save my speeches on smoking, because, as an ex-smoker, I do understand.  No, not true, he continues to smoke, and THAT, I cannot fathom.

Anyway, Dear Readers, Billy and Joyce are an odd couple, getting closer now that it is too late to say their marriage was a good one.  But they do understand one another and they do love each other.  She has carried on her back the welfare of two grown daughters, both of whom refused to leave home, one of whom has three boys, all with what we like to call "issue." Joyce's siblings and other close relatives all struggle with addiction.  She is raising one of her sister's children, which is the working miracle in that child's life, because Joyce never gave in to addiction, never gave in to the lifestyle and values around her.  So Shawna is a star student with a bright future.  Joyce is disabled now, living entirely on entitlement programs, as is everyone in the family, really.

Billy is schizophrenic.  He is a U.S. military veteran.

They have *nothing* but the items in their apartment, in material terms.  No vehicle.  The vast wealth of their benefits tend to run out before the month does.

And now he has been dumped there, in a hospital bed, with oxygen, a walker, and all that good stuff.  Hospice is supposedly on the case, but mostly they have dumped him, too -- telling Joyce to do this, this, and this... and Joyce is sick and tired, and also still overseeing her girls and her three grandsons.  She has to walk everywhere, and most of her pain is centered in her legs and back, so those walks, that she used to love, are now akin to traipsing from Bataan to Corregidor.

Give them some money.  Christina, one of Joyce's daughters, has set up a fundraiser through the very legitimate FundRazr.  Ask questions, if you are dubious.  Give a dollar, two, or three.  That's more than they have, even after digging under the cushions on the sofa.

Listen -- they save stray cats.  They keep those sons and grandsons in scouting, in church.  They guard their innocence fiercely.  They tend to Billy as best they can but are obsessed with not having the money to bury him.  Joyce hates vegetables.  Her other daughter is mentally ill but helping out as best she can.  Shawna's biological mom is back on drugs and as recently as yesterday, Joyce forced her off the premises with the instincts of a good, protective parent.

The problems are a burden even to listen to.  But they're real... and Joyce has begun to turn her life around, and where her life goes, all those other lives glommed onto her for sustenance?  They get turned around, too.
I don't want to see one iota of the beautiful progress this beautiful woman has made degraded by something as obscene as CANCER and a Veteran's Administration that just doesn't give a hoot.

That's about it for me right now.  One of the 843 smoke and carbon monoxide detectors in Marlinspike Hall is chirping, letting me know it's in need of a fresh battery.  I'm going to get The Gun and shoot it.  As soon as I find it....

Kolob Schmolob!

I've gone 18 hours without any true spaz attacks and am enormously grateful.  Unfortunately, my left foot is informing me that the respite is over, but at least I had a chance to cook dinner -- without injuring myself or a beloved -- a wild and woolly affair featuring Sven (face it, if The Castafiore is here in quarters, so is Sven), Bianca, Cabana Boy, Fred, Tante Louise (she dropped by to inspect our fire extinguishers), me, and the Feline Triumvirate.  On the menu, spicy pinto beans, and a chicken stewed with spinach, onion, cumin, and organic brown jasmine rice.  Oh, and roasted, juicy, burst-in-your-mouth mushrooms.

For dessert?  Irish whiskey.

We cheered Obama;  We jeered Romney.

It was a good time.

Like everyone, I had hoped for a better job report this morning, but I'll take tepid over awful any day.

And in pre-market trading?  GOOG hit 700.  The farther GOOG, DHI, and COH (my three current best bets) go... the more likely you bloodsucking medical creditors will get your filthy lucre.

I dropped by American Idyll, Brother-Unit TW's blog mostly featuring his incredible photography of The Canyon and The River, and wise words...  But today, I gotta steal this:

KOLOB: Mormons believe that Kolob is the star system for the planet where God lives. According to Mormon tradition, one day for Kolob is the same as one thousand years of our time. 

I have no idea if Romney believes in the stuff from the book of Abraham in the LDS tradition... Like with everything else, what he really believes is difficult or impossible to discern.   Most Christians don't read the Bible literally (unless it suits an argument), and I am hoping Romney also abstracts Kolob as... well, as something best left to NASA.

It kinda explains, in a weird way, his weakness in geopolitics...

billy

i don't do this often.  hmm.  in fact, i've never done this before.  which makes me question a lot about myself, but lets not go there right now -- one has the distinct impression, sometimes, reading this blog, that one is trapped in a clown car, going in circles.

an inspiring woman that i met on the interwebs has a husband dying of stage-4 lung cancer. his story is complicated, so is hers.  but you know how crisis-illnesses can crystallize things, how suddenly easy are priorities, after all?

they need money.

you know, in a way that mitt romney cannot even imagine.  given all evidence, mitt would tell her to take out a bank loan or to borrow what she needs from her mother.

people, they need money. christina, who has organized the FundRazr, is billy's stepdaughter.  if you have questions, click on her name and ask away, via facebook.

so, go HERE and give what you can.  for billy:

billy and a feline friend

from the Twitter account of @ann_joyce50

A Great Moment, Remembered

.
YouTube notation: "Uploaded by EVGINC on Oct 19, 2009
Barbara Jordan 1976 DNC Keynote Address taken from Great Speeches Vol. 4"

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

from "the first and only" -- a remembrance of Barbara Jordan available at the Online NewsHour.

CHARLAYNE HUNTER-GAULT: We'll talk with two people about Barbara Jordan's life and impact, but first some words from Barbara Jordan, herself.

REP. BARBARA JORDAN, (D) Texas: (House Impeachment Hearing - July 25, 1974) Earlier today, we heard the beginning of the preamble to the Constitution of the United States. "We the people," it's a very eloquent beginning. But when that document was completed on the 17th of September in 1787, I was not included in that "we the people." I felt somehow for many years that George Washington and Alexander Hamilton just left me out by mistake. But through the process of amendment, interpretation, and court decisions, I have finally been included in "we the people."

BARBARA JORDAN: (Democratic National Convention - July 1976) Now, I began this speech by commenting to you on the uniqueness of a Barbara Jordan making the keynote address. Well, I am going to close my speech by quoting a Republican President. And I ask you that as you listen to these words of Abraham Lincoln, relate them to the concept of a national community in which every last one of us participates. "As I would not be a slave, so I would not be a master. This"-- (applause) -- "This expresses my idea of democracy. Whatever differs from this to the extent of the difference is no democracy.

BARBARA JORDAN: (Democrat National Convention - July 1992) E pluribus unum. From many one. It was a good idea when the country was founded, and it's a good idea today! We must change that deleterious environment of the '80s, that environment which was characterized by greed and hatred and selfishness and mega mergers and debt overhang, change it to what? Change that environment of the '80s to an environment which is characterized by a devotion to the public interest, public service, tolerance, and love--love--love. (applause) Love.

How we miss that voice, that mind, that dignity, that thought, that heart.

the one where i finally show my face...

okay, friendly readers, i am wayyyyyy febrile and it's kind of evident.  i hate a sweaty head, in particular, and the shivers.  the burning eyes, not so bad, except that i have made it to then last 20 pages of a novel and now cannot decipher the ending.  maybe by bedtime, which, given that it's now 4 pm, might arrive any time!

here's my plan for this post.  a picture of my hero hannah, as she tests out a prosthesis and remains a young girl staring, unblinking, into big troubles, then flashing a beautifully defiant smile.

then, i am going to try to post a video update of my lovely hands and feet, and maybe a spot from my face, though we all know that'd break the camera, ha ha ha. it's a weird new development, kind of like the weird old bumps and bullae that plague my right leg.  it adds to my feelings of confidence and encourages my desire to appear in public.

as for an update on my relationship with the new specialist on The Team, and my cancellation of the big and important appointment i had with my dear mdvip go-to-guy, i'm gonna lift a "blog" post i put up over at drphil.com, that cess pool of cess pools that attracts me like a cess pool fetishist. oh god.

sometime today, i need to clean our private quarters here in Marlinspike Hall, as Marmy Fluffy Butt has been  experimenting with projectile vomiting -- most impressive, i must say.  thank goodness that our stepdown living room space is populated with most of the mission style furniture put out by l.l. bean -- meaning that slip covers are removable and washable.  not by moi, of course, as this useless left arm is... useless, but by the dear, dear fred.

as for Marmy Fluffy Butt, herself, a large part of the issue, i feel, is that she is still avoiding me like the plague, and i am her main aesthetist.  i was her daily groomer, her weepy eye cleaner.  i kept Miss Thang free of hair balls and other such gross happenings.  however, ever since i administered her eye medicine, she runs from me.

nay, she flees.  it hurts my heart, as that daily time with her was precious and i miss it.

and now, we must worry that she has a gastric blockage, though she did, i believe, just go streaking and shrieking past my bedroom door, Buddy the Freakishly Large Kitten hot on her trail.  so maybe i am worrying needlessly.  but she is such a tiny thing, all hair, really, and she's so weird that i think we may be cosmic twins.

okay, so now that i've exposed the intricate details of this post's plan, i need to go take care of these plebian matters, the vacuuming of the futons, the spot cleaning. oh, and maybe i should begin the makings of a dinner for Fred, and a rapid damp mop of... everywhere.

i cannot tell you how badly i hurt, how much i have cried today.  how hopeless it all seems.  how much martin bashir irritates me.  how i hope michelle obama speaks tonight as we all know she can, and that it lifts my spirits.

msnbc (oh god, don't get me started...) has shown several times a short clip of barbara jordan today, and it has been a comfort, for some reason.  that voice, that dignity, that intelligence.  that humor, and all the unknown suffering turned into triumph simply by who and how she was...

there is hope, there is beauty, there are stolid, solid lovely people.  and i am off to vacuum, dust, and mop -- while the percocet is working.  but i promise to be back to fulfill my compositional promises.

in fact, before i go, here is hannah:

from Hannah's CaringBridge site

this girl rocks.  at the moment, she is getting a break from chemotherapy due to low numbers, not something that anyone wants, though i bet there is a secret bit of relief, a brief sense of vacation.  she's been steadily going through chemo, sometimes clearing her numbers like a champ, sometimes falling prey to fevers and nausea.  but what doesn't change is her steadfast attitude, her straightforward walk through this unexpected trouble.  is she still my hero?  you bet.

okay, i am up and heading for the mission living quarters. yay?
**************************************************************************
it's no longer today, it's tomorrow.
i slept so hard, so long, and am thinking about doing it again.  i missed michello obama's speech. drat.
but i remember the dear ms. keenan, of naral.  hooray!  i think she did a great job.
i have no clear recollection of even writing anything above the dotted line.  still, following my own intructions, i just snapped some photos -- because video is impossible due to my hands shaking.

first, five photos of my right foot, the site of onset for "my" CRPS.  i think i will eventually lose that leg.  this is the leg that the new superduper famous ortho i saw last week would not even look at. not a brave soul, him. he?

then comes the most painful, though not the most painful looking -- my left foot/leg.  only two shots because the pain just does not show.  the onset of CRPS in the left leg came about 2 years after the right foot/leg.  i simply woke one morning, and *poof* -- there it was, a purple, cold, burning left foot.  and now, this foot/leg is behind most of my extremely loud, hopeless verbalizations and castigations of God.

next... my hands are kind of freaky right now, and embarrassing... so i just showed you the extreme weirdness of the nails.  it began on my left hand a couple of years ago -- the thumb and middle finger only.  then, one morning -- *poof* -- i noticed that the thumb and middle finger of my *right* hand had begun to ape the left side.  the symmetry of CRPS is just... creepy.

i had to show you poor marmy, hiding away.  she's upset that we washed and vacuumed and generally rendered antiseptic her favorite furniture, plus she feels like crap and won't accept any nuggles or loving.  i did see her scarf down a few treats though, so she's okay...

also, marmy is there as a buffer for the first time i've ever shown even a bit of my face.  maybe now my family, constantly demanding photos of "me" can understand.  i have CRPS crapola even on my face.  please respect how absolutely ugly and socially WRONG that makes me feel.

besides, you know the rule:  no wearing of CRPS faces out-of-doors or in photography/videography after labor day.

without further ado:

oops, i almost forgot the cess pool of cess pools, the "community blog" area of drphil dot com.  why i put it there is anyone's guess.  oh, i know:  i think dr. phil can cure me.  i think he is one hunk of a brilliant psychologist.  yeah, that was it.  so here it is.  stylistic differences and lack of cussing that may be of note are due to an ongoing war with moderators there, who do not like publishing ANYTHING i write.  hmmm, maybe that is why i am over there, pelleting them with writing!

summing up  [stolen from drphil.com, mwa ha ha ha!]

i have to redefine my relationship with my "mdvip go-to-guy," my pseudo-concierge internist who has been keeping me alive for about 13 years now.  i cancelled a huge appointment i had set up with him for tuesday after my experience with the new ortho specialist i saw last week.

basically, the hip dude (as we shall call the new specialist) said he would be "too scared" and even "terrified" to operate -- and he's purportedly one of the top hip dudes in the country.  he looked mostly at the floor while he talked to me.  he had already spoken -- twice -- to my infectious disease dood guy, and, to shoulderman, as well.  he did not even want to proceed with a simple ultrasound, and really, really wanted to avoid discussing doing an aspiration under fluoroscopy.

i drove him to his bottom line and that turned out to be... no one thinks even a wash out of the right hip is worth doing.  they don't think any more effort should be expended on trying to defeat this infection.

i pointed out, with what i consider amazing calm, that this leaves me with daily fevers, chills, sweats, whole days in bed, whole weeks in bed, and diminished.... everything.  i did not mention pain, because then my sangfroid would have boiled over.  i did not mention pain because, hey!  that wasn't his specialty.

i tried to poke at him enough to see if the CRPS in that leg, in particular, was part of his reluctance to go after the infection.  just as he wouldn't look at me, he wouldn't look at that leg.

so... i am to keep a follow-up appointment with infectious disease dood, even though that appointment does not exist.  i am to wait another month, for a reason i cannot remember -- but i think he wants more time between ending abx and testing.

but then, what to do with the message:  if we grow a pathogen from the aspiration, i still won't operate?

so i came home, crying in the car, because, damn it, it hurt -- and then looked at the calendar and  saw my upcoming big assessment appointment with mdvip go-to-guy.... and emailed him to cancel.  he's been very brave, very helpful... but if the specialists won't do any more, what can he?

my last visit with nathalie, i begged for an injection of toradol.  she said they didn't have any.... "sorry." so when we were in the pharmacy, filling all the damn opiate prescriptions, i pulled the dear pharmacist aside and asked him if toradol was available in non-injection form.  "yeah, and i don't know why, but no one prescribes it anymore except as inpatient, by i.v...." so i ran (okay, rode) back up to the office, and left a note marked URGENT for nathalie... and lo!  the angel of the lord guided her hand and mind, and she called down a 5 day prescription.  it's a pretty dangerous drug, and that's as long as i can have it.  so this is my first whole 24 hours off and i can feel it.  will she let me have it one week out of the month, do you thnk?  one week when the bone pain can be brought down to non-screaming levels?

go-to-guy doesn't know this happened, nor shoulderman.  i've had serious bleeds in the past and all that jazz, my hemoglobin is dropping about a point a week (until i stopped going in to have it drawn) -- "for some reason."

i feel like i need to tell fred that i've reached the end... the trouble is, he thinks i've been there so many times before, he won't pay attention, or he'll think it is the pain talking.  i had hoped to leave him more money and a more organized house (one that could practically run itself!) -- but i have done the best i can.

so i am blowing off all the specialty dudes, and even my dear mdvip go-to-guy, though i know he is there for me, and always will be.  god bless the man.  this is how he answered my email:  "Sorry for what you're having to go through. I wish there's more I could do to help you."

and that about sums it up, eh?

Reeling it in...

Published on Aug 30, 2012 by kalambillionbeats

Neuroinflammation and Neuroautoimmunity in CRPS

graphic courtesy of CRPS UK

All I can say is that I have been waiting for this article for a long time, without even knowing it.  Available in its entirety through Springerlink, I encourage anyone struggling with explanations for "neuroinflammatory" symptoms/progression in their experience with CRPS to read it, and pass it on to their doctors.

Once again, we see His Holy Turd, Ochoa, invoked early on -- as most movement disorders, etc. -- shoot, as almost all symptoms of CRPS are psychogenic, according to this man owned by the forensic wing of Worlers Compensation.

The authors do the best thing in debunking him and those perplexed by much of the symptomology of CRPS -- which for too long has been called a diagnosis of exclusion.  That is just no longer true, not with the wealth of testing and nerve sampling that has finally caught up with the courtroom idiots.

In any event, "Neuroinflammation, Neuroautoimmunity, and the Co-Morbidities of Complex Regional Pain Syndrome," by Mark S. Cooper & Vincent P. Clark, published August 27, 2012 in the Journal of NeuroImmune Pharmacology -- is published online with open access, and God bless those making such infrequent gestures.

About the authors:

M. S. Cooper (*)
Department of Biology, University of Washington,
Seattle, WA 98195-1800, USA
e-mail: mscooper@u.washington.edu

V. P. Clark
Departments of Psychology and Neurosciences,
University of New Mexico,
Albuquerque, NM 87131-0001, USA

V. P. Clark
Mind Research Network
and Lovelace Biomedical Research Institute,
Albuquerque, NM 87106, USA




Here's a bit from the intro, and I encourage anyone with CRPS to make a copy of the article, and share it with your health care providers. As you can tell, I really think this is where the most meaningful research is heading.  (And lest anyone ever start to forget, Jose Ochoa is still a medical fraud and a bona fide turd -- in my humble and neutral opinion.)


Complex Regional Pain Syndrome (CRPS), formerly referred
to as Reflex Sympathetic Dystrophy (RSD), is one of the
diseases classically defined as hysteria minor by the early
neurologist, Dr. Jean-Martin Charcot (1892). To this day, the
sensory disorders and movement disorders of CRPS are sometimes
diagnosed as somatization disorders, or conversion disorders,
respectively (Ochoa and Verdugo 1995; Verdugo and
Ochoa 2000; Hawley and Weiner 2011). Such somatoform
disorders are defined as a chronic condition where physical
symptoms are observed, but no physical cause can be found
(Stone et al. 2011). In the absence of medical explanations for
the symptoms, a psychological etiology is presumed (Stone et
al. 2009, Stone et al. 2010).
In contrast to these views, substantial evidence has been
obtained that CRPS is a neuroinflammatory disorder, with a
probable autoimmune component in many individuals (Blaes et
al. 2007, Goebel et al. 2011; Kohr et al. 2011; Goebel 2011). In
a study of adult CRPS patients, 90% of the cohort had autoantibodies
to either the beta(2)-adrenergic receptor (β2AR) or the
muscarinic acetylcholine receptor (M2R) (Kohr et al. 2011).

55%of the patients had autoantibodies to both neurotransmitter
receptors. [...]




Achieving a cellular and molecular understanding of the
clinical progression of CRPS, as well as the generation of its
complex symptoms, requires modeling of the immunologic
and integrative physiology involved. It is important to consider
how distressed neurons and glial cells release factors
that stimulate the extravasation of leukocytes and autoantibodies,
from the bloodstream, into the parenchyma of the
CNS (Watkins et al. 2007). Serious neuroinflammatory consequences
would be expected to arise when β2AR and M2R
autoantibodies exudate from blood vessels, together with
complement proteins and leukocytes (Figs. 1 and 2).
Beggs et al. (2010) have recently found that the blood–brain
barrier in the spinal cord of rats is transiently compromised in
response to peripheral nerve injury. Extravasation of leukocytes
into the parenchyma of the cord has been found to last for
several days following a sciatic nerve injury (Milligan ED,
personal communication). In a CRPS patient with a peripheral
nerve injury, one might expect circulating autoantibodies to
exudate into the parenchyma of the injured nerve. Autoimmune
attack on peripheral nerves might trigger leukocyte extravasation,
autoantibody exudation, and neuroimmune activation in
the spinal cord as well. Neuroinflammation in the cord could
produce a mixture of pain, autonomic dysfunctions, somatovisceral
dysfunctions, and/or abnormal motor functions. CRPS
is a neurological disorder where many of these dysfunctions
can be expressed in a single patient (Schwartzman et al. 2009).
Vascular breakdown or leakage may be a critical step in
allowing autoantibodies access to the neuroautoantigens of
CRPS patients. Focal accumulations of neuroautoantibodies
on target cells are likely to initiate neuroinflammatory
responses. Whether the antibody-initiated neuroinflammation
remains as discrete foci, or whether the neuroinflammation
begins to propagate through the neuraxis, are key
questions for understanding the chronicity and spread of
CRPS symptoms in a given patient. CRPS shows distinctive
patterns of spread throughout the body (van Hilten et al.
2001; van Rijn et al. 2011). Spread of CRPS symptoms to
other body sites often occurs in a contiguous fashion. However,
it is possible for CRPS symptoms to appear quickly in
non-contiguous locations (van Hilten et al. 2001). Both
types of CRPS spreading behavior could be linked to the
establishment and spread of neuroinflammation within the
neuraxis. At this point in time, how CRPS symptoms spread
within the neuraxis is primarily known from an analysis at
the symptom level. Cellular and molecular knowledge about
the spread of neuroinflammation within the neuraxis in other
disorders comes from the neuroimaging of human patients,
as well as from animal model studies of neuropathic pain.

That ought to prime the pump of your interest... and what is especially helpful to me are the sections on movement disorders, since, yes, I am still spending much time in screaming mode, feeling powerless over the spasms and contortions in my legs.  Also, odds are good that if I pick something up, I will be retrieving it from the floor in short order.

It gets old!

Dr. Phil's Moderators: Keeping a Good Woman Down

Because I feel about as far away from "cute" right now as it is possible to be, I won't write "Foctor Dill" or some other adorable way to say "Doctor Phil" without saying "Doctor Phil."

Like sometimes I call him "the big bald guy." Go ahead, take a minute or two to chuckle.

I've been trying to write a post on the DrPhil.com message board dedicated to "Depression and Grief" support, only to be slapped down and censored repeatedly by the moderators.

My crime?  Trying to organize a very small, infinitely minute movement to raise taxi money for a "member" of the forum who has an actively dying husband at home, no money, a family that takes the term "dysfunctional" to new heights -- mostly due to inherited drug and alcohol dependency, and emotional/physical/sexual abuse.

I had given up on her.

Then, as I checked into this place to see how she was doing -- for one never stops caring, once one starts, no matter the twists and turns of that caring -- I watched her stand up straight, live right, and try with superhuman strength to pass on to her children and grandchildren a new paradigm.

She also gets my humor, and most of my odd allusions, and that stokes my ego.

One of the things she is doing, beyond nursing this man whom she has never really loved in a Hallmark way, with whom she has passed whole days without speaking, and who only now seems to understand her fidelity, is raising one of her sister's children -- essentially since birth.

This child shouldn't have had a snowball's chance in Hell to even see Success outlined on a far horizon.  Instead, she's been raised with strong values, has made superior academic achievements, and wants, like all such kids, to be a doctor.  I know this like I know anything -- she is going to have a tough time, because there comes those days when being "good" by opposing all that is clearly "bad" morphs into situations that are much less clear, not public, lacking cheerleaders, lacking obvious down sides.  But she's going to make it, and she is going to make her Moms very proud.

Her other children are also caught up in the evolution she has both invented and just been caught up in by the grace of the graces.  Already grown, closer to the dysfunction than this adopted young high schooler, better schooled in sly graft, in the Big Whine, in ducking responsibility as I define it (the definitive frame), mired to the upper thighs in a history of bad choices, and no choices -- it would be easy to say "Let's exclude them from this happy summation."

But let's not.  One has three young sons, each with problems, and is dependent, not just on every entitlement intiative ever envisioned, but also dependent on her mother.  She is kind, desperate for love, fiercely loyal, confused, and trying to change, as she watches her mother embrace change, and its challenges.  She's a great mom, and wants to be more.

The other daughter suffers from badly diagnosed mental illness -- or has learned to feign it -- and needs mental health treatment and an infusion of intense, triple-powered self-worth.  She's an untapped person -- I almost want to croon, in old radio style:  "who knows what wealth lurks within..."

This woman has a sister whose only shot at drug and alcohol rehabilitation comes from her not infrequent incarcerations.  She's done what women do who are addicted and has the children to prove it -- though none of them have had her guiding hand as they grew, being instead scattered among fathers, grandparents, and that famous "village" that raises such children.

This woman had a father who treated her like trash, a mother who either did not care or was too beat down to intervene... NO.  No, I don't buy that -- never have, never will, when it comes to mothers.  It's always a choice -- and I think in this case, her mother was just relieved that she had a stand-in for some of the abuse being doled out by a mean, twisted husband and father.

When her father died a few years ago, this woman shocked the Dr. Phil community with statements of forgiveness and claims of missing the man.  What the ultimate, real truth will be in her heart regarding her father will be, I cannot imagine.  Right now, all I can say is that I understand the initial reaction she went through, which was one of benign disinterest, because that's where I am following the recent death of my own progenitor.

She makes frequent claims about being a forgiving person who holds no grudges, but these statements are often sandwiched between venomous expressions of hate.  Thank God, she's human, after all!  I say that because Fred is convinced she is nothing but a con artist, as he and I have both been had by internet cons more times than either of us will honestly admit to.

Her mother is alive, and living in the same Section 8 apartment housing that she and one of her daughters -- oh, and an addicted brother, too -- inhabit.  They're on different floors but from the descriptions she offers, it sounds like one big hang out.  For some reason, at times, I picture an ant farm -- by which I mean no disrespect.  It's just the image that pops up -- tunneling, rushing, going back and forth, and nowhere.

She worked until -- in what was possibly one of her worst decisions -- the day she decided she was disabled and could not work anymore.  Rather than follow some regulatory and self-protective measures for leaving work due to disability, she just... quit.  That choice, as bad as it was, seems to have led her down a path of self-examination that not many of us have the courage to take.  Now she is at that phase where the pains of arthritis, fibromyalgia, degenerative disk disease are showing her what disability is all about -- stuff you cannot fix, pain for which there is really no treatment.  It pisses her off, as she is convinced that the doctors and the medical establishment are holding out on her, treating her differently.  Sometime soon, she'll stop wanting more tests, more drugs to try, more specialized doctors to discover.  Like I said, she's human, and becoming more normal week by week.

So her husband, the other half of a loveless union, has end stage lung cancer and is installed in a hospital bed in their tiny apartment.  He gets up to go to the bathroom and to smoke.  He is also schizophrenic.

She is loyal, and tender-hearted.  She wants to care for him, though she is equally obsessed with paying for the disposal of his dead body.  She and her immediates have no car, it's hot, her back and legs hurt like heck, she has dozens of things to do to keep the simmering dysfunction of her ant-farmed family under control so that this man can die in a state resembling peace.  Hospice is helping but not, it sounds like, as much as they ought.

She writes well and some of the effectiveness of her story of poverty comes from its straightforward presentation.  In a few sentences, she shares the experience of walking with bags of dirty laundry to the laundromat, her old mother coming along to stop by the bank, doing as much shopping as she can for "household supplies."  It was very hot outside, her back and legs causing severe pain.

My sin, apparently, is proposing that the "support" community use PayPal as a kind of Lenten depository, as none of us are dripping gold, either.   The only example I could come up with involved my suffering the loss of the several Diet Ginger Ales that I imbibe daily -- which would provide a few bucks a week that could go into my Lenten Doctor Phil Taxi Fund for this lady.

Probably the moderators, who don't like me, of course, because I don't like them, or their bathetic boss, are upholding some rule against fundraising.  It'd be nice if they'd let me know, but they'd rather just slice and dice most anything I try to post.

If this is a fundraising proposal, it's a sad one.  A few bucks from a few people who can ill afford to give them -- who are always the people who end up being the heart and soul of giving.  This Depression and Grief Support board supported by Phil McGraw is her community, which is why I address the proposal to them.  They want to help, or so I suppose.

She or her daughter need only set up a PayPal account of their own, and have a way to receive the funds -- a bank account, say.  Or a check-cashing joint?  Or Western Union?  Something... I think she could easily figure that out.

It's just for taxi money, for this group of women trying to survive, and simultaneously care for a dying, schizophrenic, vet who has a chance to form loving relationships in the last weeks and months of his sad and fumbling life -- a priceless gift for his step-children and grandchildren, and for this woman, struggling to keep everyone on the right path, a path she has always known, somehow, without anyone to guide or help her.

I would simply like to keep her encouraged.  And yeah, I would also like to see this Dr. Phil community do something besides stew in its own inabilities.  That includes the Moderators.

i'm not afraid

this doesn't really count as a blog post, i am maintaining hiatus status... but oh, the excitement!

i made my second and third videos with the new camera.

both feature the same actors, two men unknown to me who happened to gather in our tiny vineyard (a new ecotype that will pucker your puss!) about half a pink submarine's length from Marlinspike Hall's drawbridge and koi-cluttered moat.  one vid has an extended view of my thigh and the other seems to have been subject to a poltergeist's antics, but they're clear enough.

a drug deal!

fred is pissed at me, not speaking.

after reviewing the first attempt, i decided to go outside, wheelchair-lady prominently framed by our factitious  florentine baptistry doors, hoot at the two doods, wave, and push record.  being professional actors, they both obligingly turned in my direction and stared at the handycam.  i only wish i knew their names so that i could give proper attribution in the credits.

i think fred believes it might be more circumspect not to advertise one's videography of the local criminal element.  i'm not afraid.  i know fred will defend me.

hmmm....

anyway, once i have enough for a short documentary, i am turning it all over to constable tante louise.  i'm not afraid.  oh, i said that already.

we return you to the already-in-progress blog hiatus.  (i'm on day 3 of a 5-day medication.)

poem-a-day: walt whitman, "out of the rolling ocean, the crowd"

A poem by Whitman with music by Copland from hatemusic on Vimeo.

Out of the Rolling Ocean, the Crowd

by Walt Whitman

1

Out of the rolling ocean, the crowd, came a drop gently to me,

Whispering, I love you, before long I die,
I have travel'd a long way, merely to look on you, to touch you,
For I could not die till I once look'd on you,
For I fear'd I might afterward lose you.

2

(Now we have met, we have look'd, we are safe;

Return in peace to the ocean, my love;

I too am part of that ocean, my love—we are not so much separated;

Behold the great rondure—the cohesion of all, how perfect!

But as for me, for you, the irresistible sea is to separate us,

As for an hour carrying us diverse—yet cannot carry us diverse forever;

Be not impatient—a little space—know you, I salute the air, the ocean and the land,

Every day, at sundown, for your dear sake, my love.)

Leaves of Grass (1867)