Friday, September 14, 2012

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

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:

[Portable Poetry ...poems for your pocket]

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


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 

Wednesday, September 12, 2012

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?

Monday, September 10, 2012

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,

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....