Monday, October 1, 2012

Cheating With Waitresses: "Of Being Numerous"





I recently found a photo of The Great American Writer with whom I cohabitated on that street in Oakland that really was just barely Oakland.  Right off Telegraph Avenue, turn right at the pink stucco church with the red neon screaming i-am-a-church-in-this-drive-by-shooting-land.  Our landlords were Paul and something-something, who made us a brand new apartment that faced the small back yard, fenced, next door to The Great American Writer's cousin who introduced me to Rainier Ale and how easy it is to get a doctorate degree.  He thought I was a slut to have moved in with a student, even if it was a blood relative he could easily do without (that Rainier Ale was a truth serum).

My Great American Writer, our neighbor's cousin,  loved waitresses who coyly asked if he were a writer, as he held tables for hours, hand to forehead, pen in hand, fine leather writerly accoutrements that I bought him in Paris. They'd end up asking to hear a poem, and end up fucked in their own beds, as I slept, or did not sleep, in ours.  It was hardly worth unpacking, the moving out came so often.  I lived in people's basements and rent-out rooms, forced to adore the children that came with, and the coils screwing up through mattresses redolent of mildew, waiting for the call to meet, the weeping, the regret, the apology.  Those were the best meals, often fantastic Italian.  Roasted bones, gravy. The last after-the-cheat meal, though, he spent preening because a real [very published, visiting prof] poet was holding court two tables away.  I went back to Paris but still sent gifts.

His talent was in finding things -- overheard words, colors that clanged, shapely breasts unbound by bras.  That I taught a class in a tight tee without benefit of undergarment was what first attracted him to me, he said.  He said it as I took the first walk -- you know, the first naked walk away from the bed, you, walking as if you don't care, hoping you look good, good enough. Reaching the shower, getting all wet, roar of water in the ears, thanking God for that moment of obliteration.

That he gave me Oppen does not wipe the slate clean.  It's more that it clears the air and carries his cartoon bullshit balloons way high into the sky, leaving this poet dead of dementia who nailed his poems to plywood.  Not that Oppen is a comfort.  But he surely was, and is, an option.

The Great American Writer is now on staff at an exclusive private academy, very college preppy, very somehow Holden Caulfield.  The students rate the profs by stars, out of five, and he has three.  Does he make them read Oppen, or H.D., or Michael Palmer?  Does he read them the words he's overheard, the backs of waitresses and dismissed lovers?  Does he char the bones?  Does he remember my gazpacho, made on the coldest day of the year?

It started out warm, that day, perfect for cold soup, spicy 'maters, cucumber to cool the cheeks, for texture, and mild onion, then a front flew through, it was like an arctic winter, and you came home to my gazpacho, made on the coldest day of the year, to shower, change, and go out again, to meet someone at some café, my huge, huge pot of gazpacho a black hole in the fridge.  

The desire for soup hit when I was in line at Peet's, on Vine, near Chez Panisse (I blame Alice Waters for everything, mostly for infidelity, and the tomatoes) and there was a grocery, right there, and I filled my arms with bags of things so fresh and walked the hour and a quarter home.  Baguettes peeking out of paper bags, I was so desperate, my heart racing in its knowing.

That was the night I ran down our dangerous street in what can only be called a "flimsy nightgown" -- not pausing at the pink stucco/red neon church, no hitch in my stride as i ran across, back to Telegraph Avenue, site of my earlier foody saunter, to what suddenly was home base, the bus stop bench.  Mostly naked, frigid wind whipping, I was looking for the bus as well as your grey Mustang. When you woke next to me that tomorrow, I no longer spoke, all was done, the crazies were over. I had road rash on my feet, a few pebbles still embedded around the toes.

So, yeah, thanks for Oppen... for Oppen's Mary.... and all the Objectivists.  For somehow -- and it boggles the mind how! -- pointing your beefy finger straight at sincerity.

Clarity

In the sense of transparence,
I don’t mean that much can be explained

Clarity in the sense of silence.

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

Of Being Numerous, Sections 1-22 by George Oppen

1


There are things
We live among ‘and to see them
Is to know ourselves’.


Occurrence, a part
Of an infinite series,


The sad marvels;


Of this was told
A tale of our wickedness.
It is not our wickedness.


‘You remember that old town we went to, and we sat in the ruined window, and we tried to imagine that we belonged to those times—It is dead and it is not dead, and you cannot imagine either its life or its death; the earth speaks and the salamander speaks, the Spring comes and only obscures it—’


2


So spoke of the existence of things,
An unmanageable pantheon


Absolute, but they say
Arid.


A city of the corporations


Glassed
In dreams


And images—


And the pure joy
Of the mineral fact


Tho it is impenetrable


As the world, if it is matter,
Is impenetrable.


3


The emotions are engaged
Entering the city
As entering any city.


We are not coeval
With a locality
But we imagine others are,


We encounter them. Actually
A populace flows
Thru the city.


This is a language, therefore, of New York


4


For the people of that flow
Are new, the old


New to age as the young
To youth


And to their dwelling
For which the tarred roofs


And the stoops and doors—
A world of stoops—
Are petty alibi and satirical wit
Will not serve.


5


The great stone
Above the river
In the pylon of the bridge


‘1875’


Frozen in the moonlight
In the frozen air over the footpath, consciousness


Which has nothing to gain, which awaits nothing,
Which loves itself


6


We are pressed, pressed on each other,
We will be told at once
Of anything that happens


And the discovery of fact bursts
In a paroxysm of emotion
Now as always.   Crusoe


We say was
‘Rescued’.
So we have chosen.


7


Obsessed, bewildered


By the shipwreck
Of the singular


We have chosen the meaning
Of being numerous.


8


Amor fati
The love of fate


For which the city alone
Is audience


Perhaps blasphemous.


Slowly over islands, destinies
Moving steadily pass
And change


In the thin sky
Over islands


Among days


Having only the force
Of days


Most simple
Most difficult


9


‘Whether, as the intensity of seeing increases, one’s distance from Them, the people, does not also increase’
I know, of course I know, I can enter no other place


Yet I am one of those who from nothing but man’s way of thought and one of his dialects and what has happened to me
Have made poetry


To dream of that beach
For the sake of an instant in the eyes,


The absolute singular


The unearthly bonds
Of the singular


Which is the bright light of shipwreck


10


Or, in that light, New arts! Dithyrambic, audience-as-artists! But I will listen to a man, I will listen to a man, and when I speak I will speak, tho he will fail and I will fail. But I will listen to him speak. The shuffling of a crowd is nothing—well, nothing but the many that we are, but nothing.


Urban art, art of the cities, art of the young in the cities—The isolated man is dead, his world around him exhausted


And he fails! He fails, that meditative man! And indeed they cannot ‘bear’ it.


11


            it is that light
Seeps anywhere, a light for the times


In which the buildings
Stand on low ground, their pediments
Just above the harbor


Absolutely immobile,


Hollow, available, you could enter any building,
You could look from any window
One might wave to himself
From the top of the Empire State Building—


Speak


If you can


Speak


Phyllis—not neo-classic,
The girl’s name is Phyllis—


Coming home from her first job
On the bus in the bare civic interior
Among those people, the small doors
Opening on the night at the curb
Her heart, she told me, suddenly tight with happiness—


So small a picture,
A spot of light on the curb, it cannot demean us


I too am in love down there with the streets
And the square slabs of pavement—


To talk of the house and the neighborhood and the docks


And it is not ‘art’


12


‘In these explanations it is presumed that an experiencing subject is one occasion of a sensitive reaction to an actual world.’


the rain falls
that had not been falling
and it is the same world


. . .


They made small objects
Of wood and the bones of fish
And of stone. They talked,
Families talked,
They gathered in council
And spoke, carrying objects.
They were credulous,
Their things shone in the forest.


They were patient
With the world.
This will never return, never,
Unless having reached their limits


They will begin over, that is,
Over and over


13


           unable to begin
At the beginning, the fortunate
Find everything already here. They are shoppers,
Choosers, judges; . . . And here the brutal
is without issue, a dead end.
                                            They develop
Argument in order to speak, they become
unreal, unreal, life loses
solidity, loses extent, baseball’s their game
because baseball is not a game
but an argument and difference of opinion
makes the horse races. They are ghosts that endanger


One’s soul. There is change
In an air
That smells stale, they will come to the end
Of an era
First of all peoples
And one may honorably keep


His distance
If he can.


14


I cannot even now
Altogether disengage myself
From those men


With whom I stood in emplacements, in mess tents,
In hospitals and sheds and hid in the gullies
Of blasted roads in a ruined country,


Among them many men
More capable than I—


Muykut and a sergeant
Named Healy,
That lieutenant also—


How forget that? How talk
Distantly of ‘The People’


Who are that force
Within the walls
Of cities


Wherein their cars


Echo like history
Down walled avenues
In which one cannot speak.


15


Chorus (androgynous): ‘Find me
So that I will exist, find my navel
So that it will exist, find my nipples
So that they will exist, find every hair
Of my belly, I am good (or I am bad),
Find me.’


16


‘. . . he who will not work shall not eat,
and only he who was troubled shall find rest,
and only he who descends into the nether world shall rescue his beloved,
and only he who unsheathes his knife shall be given Isaac again. He who will not work shall not eat. . .
but he who will work shall give birth to his own father.’


17


The roots of words
Dim in the subways


There is madness in the number
Of the living
‘A state of matter’


There is nobody here but us chickens


Anti-ontology—


He wants to say
His life is real,
No one can say why


It is not easy to speak


A ferocious mumbling, in public
Of rootless speech


18


It is the air of atrocity,
An event as ordinary
As a President.


A plume of smoke, visible at a distance
In which people burn.


19


Now in the helicopters the casual will
Is atrocious


Insanity in high places,
If it is true we must do these things
We must cut our throats


The fly in the bottle


Insane, the insane fly


Which, over the city
Is the bright light of shipwreck


20


—They await


War, and the news
Is war


As always


That the juices may flow in them
Tho the juices lie.


Great things have happened
On the earth and given it history, armies
And the ragged hordes moving and the passions
Of that death. But who escapes
Death


Among these riders
Of the subway,


They know
But now as I know


Failure and the guilt
Of failure.
As in Hardy’s poem of Christmas


We might half-hope to find the animals
In the sheds of a nation
Kneeling at midnight,


Farm animals,
Draft animals, beasts for slaughter
Because it would mean they have forgiven us,
Or which is the same thing,
That we do not altogether matter.


21


There can be a brick
In a brick wall
They eye picks


So quiet of a Sunday
Here is the brick, it was waiting
Here when you were born


Mary-Anne.


22


Clarity


In the sense of transparence,
I don’t mean that much can be explained


Clarity in the sense of silence.

Saturday, September 29, 2012

Sumpin' Pithy Stolen From TW's Blog



A year ago, I was at a dinner in Amsterdam when the question came up of whether each of us loved his or her country. The German shuddered, the Dutch were equivocal, the Brit said he was "comfortable" with Britain, the expatriate American said no. And I said yes. Driving across the arid lands, the red lands, 
I wondered what it was I loved. The places, the sagebrush basins, the rivers digging themselves deep canyons through arid lands, the incomparable cloud formations of summer monsoons, the way the underside of clouds turns the same blue as the underside of a great blue heron's wings when the storm is about to break.

Beyond that, for anything you can say about the United States, you can also say the opposite: we're rootless except we're also the Hopi, who haven't moved in several centuries; we're violent except we're also the Franciscans nonviolently resisting nuclear weapons out here; we're consumers except the West is studded with visionary environmentalists...and the landscape of the West seems like the stage on which such dramas are played out, a space without boundaries, in which anything can be realized, a moral ground, out here where your shadow can stretch hundreds of feet just before sunset, where you loom large, and lonely. 
--Rebecca Solnit
Storming the Gates of Paradise



What Happened to All the Clanging Brass Balls?

Maude: You know, at one time, I used to break into pet shops to liberate the canaries. But I decided that was an idea way before its time. Zoos are full, prisons are overflowing... oh my, how the world still *dearly* loves a *cage.*

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

It's a gritty morning.  I need to do a dozen things, eleven of them clamoring to have been accomplished yesterday.

For once I'll spare you.  I put the Maude quote up top to get that crap out of my system.

So let me tell you about the brief visit with my Hawaiian-shirted, sandal-wearing NeuroMan on Thursday.

By the way, he continues to throw his staff under the bus for having attributed my spasticity to cerebral palsy (though Thursday, he said MS).  He further maligned this poor staffer for having ordered him an artichoke and olive pizza when what he craved -- and he is clearly a man of cravings -- was anchovies and onion.

I forgave everyone again, assuring them that there was not even the opportunity for offense being taken, at which I got the usual strange looks.

I had written out a text for him, as it was also, on Thursday morning, a gritty morning and I needed to do a dozen things, eleven of them clamoring to have been accomplished on Wednesday.  The epistolary version of my appeal to him for help began:


today's visit has several goals and i'm not leaving without answers.
just kidding.

He let me down, he really did.  He made squeaky noises about my need for specialized researchers who have been dubbed by the Queen as acceptable distributors of drugs in off-label uses.  He said, this is something that PainManagement Dood should be in charge of... or anyone... anyone ELSE.  "But I don't know enough, I don't specialize..."

Alarms, sirens, bright lights made my brain hurt.  No one knows, no one specializes, you dimwit hawaiian-shirted, sandal-wearing pseudo-cool guy!  Even the moody medico brave enough to infuse me with vast amounts of intravenous ketamine knew that.

He dared start to lift a lip in a sneer at my exposé on neuroinflammation, neuroautoimmunity, and my multimedia presentation of the DVD "Why am I still sick?" which is about biofilm infections.  If you claim not to know, if you claim to be ignorant, then don't hint at an upper lip tic when presented with information.

So I hit him squarely in the nose and kicked him where his brass balls were supposed to be a-hanging.

Brass Big Boy Nuts


Okay, I either hit him squarely in the nose and kicked him where his brass balls were supposed to be a-hanging or I said, "I need you to step up."  It amounted to the same thing.

Turns out he yammers, too.  So I told him to step up, several times.  It turns out that the thought of my good MDVIP go-to-guy doctor sets off fireworks in my verbiage.  He always steps up.  He takes the risks.  He never yammers, never makes excuses, and the goddamn Queen curtsies to him.  And he doesn't get the money the specialists get (InfectiousDisease Dood?  Oh my God, I am still getting EOBs that are clearly built on the art of upcoding) -- nowhere near.

That may have been the persuasive part -- not my anger at NeuroMan's neutered attitude, but my admiration for MDVIP go-to-guy, and my desire to protect him.

I left the office with 3-months worth of memantine [a med used for Alzheimer's that is an NMDA receptor blocker], and a prescription for dantrolene, mostly used in MS patients for spasticity.  Add that to Tuesday's Mobic, and I strong-armed my way through a fucked-up medical system with some success.  I can now predict that October will not be the month in which I succumb to suicide's sexy call.  Should there be any improvements, you, Dear Reader, will be the first to know.

Friday, September 28, 2012

More about Billy


Billy and his three grandsons

CLICK HERE FOR BILLY'S FUNDRAZR

I hope Joyce, Billy's wife, doesn't mind -- I'm stealing part of her blog posted on the Dr Phil website.  I think it helps us know him better, and if you've been on the fence about donating a few dollars to their FundRazr effort, maybe this will help you make up your mind and give a little.  HERE is the LINK.

And here is Joyce:


I got Billy to eat just a little bit earlier which is better than not eating at all.

It is so hard to watch him each day knowing how much pain he has and not being able to do anything. Since August 13th when he came home from the hospital he has lost 30 more pounds so that is a total of 55 lbs.  He has had such a hard life already.  He has been abandoned by parents that should never have been parents (there were 4 kids one died of a drug overdose before I met Billy) when he was very small. Him and his brother apparently went to a foster home and orphanage (his other brother the one that passed on and his sister went to a foster home in Hickory) where his uncle found them and took them in, but from the stories I have been told Billy was alsway being thrown out due to his undiagnosed schizophrenia, so he has been homeless a lot, living on the streets and eating out of trashcans.  

He joined the Army the day he turned 18 and was stationed in Germany for a couple years. He was 22 when he was diagnosed with schizophrenia at Fort Bening, Georgia. He has been married once before to a woman that apparently was quite abusive to him. His sister said she was always calling him names and belittleing him and smacking him

One of the things I always got so mad at was him giving his money away, but his sister said he has done that all his life too. He would work (when he lived with his sister and before becoming disabled) and one time he heard this woman talking about needing money to feed her kids, he just got paid that day, cashed his check, kept a few dollars for himself and gave the rest to her. Libby said he was always like that, he would come home on payday and she would ask him about his check and he would say he gave it to someone that needed it more than he did.

Thought I would just share a little bit about him, he has his ways but for the most part he is really a good guy, always worried about everyone else, he still gives his money away although not as much. He has had a habit of giving everyone an allowence, he has to make sure Misty, Christina, Brian, Aric, Christopher and Shawna gets 10 to 20 dollars each,  every month. He even gave my brother money when he lived with us. I told him no wonder I couldnt get rid of anybody, he was paying them to live with us.  I dont fuss at him now for doing it, its his disability and as long as I can pay the bills he can give it away if he wants to.   There has been plenty of times we have had to borrow money (almost every month) the last week of the month to make it to payday and I would tell him that if he wouldnt give everything away we wouldnt have to do that, but he never listened, he would still give it away anyway.

[....]

Not 100 percent sure but Roger (Billys brother) may pay for a cremation and then me pay him some of it back, but he hasnt really said for sure.  Its not what Billy wants or deserves as a veteran (to me he deserves the full military burial he should have as A veteran) but thats just how it has to be. Since the donation thing we started hasnt been going to well (not well at all in a month we have raised 63 dollars, only 12 from the online FundRazr) we have to do what we have to do even if it means the county coroner does something with the body.

UPDATE, FRIDAY, SEPTEMBER 21:
This morning, Billy finally agreed to go -- temporarily -- to the actual brick-and-mortar Hospice facility, so that they can get him stabilized on a good pain regimen, and get rid of some of the fluid plaguing him.  Also, one might make an argument for this being some timely respite for Joyce.  He will be returning home as soon as those goals are accomplished.  I've never met Billy, nor Joyce, for that matter.  She and I have played at different scenarios in our relationship -- mentor/mentee, online mutual supporters, online enemies, paranoid tag-teamers, and, finally, I think, cautious friends.

I can attest to the truth of her situation, and as someone who has been conned several times, you can put trust in that assessment.

But Billy... he's schizophrenic and I don't know what that means in any particular way.  He is becoming manipulative, emotionally, and my first reaction is, "Well, hell, the man is dying a hard death, after scrabbling through a hard life..." and other various expiations.  When Joyce was leaving to go home after they had settled him in his room at hospice, she started to close the door. Billy called out to leave it open, as he did not want to die with the door closed.

Oh... I understand Billy!  I am emotionally manipulative, calling out, and when someone risks their sanity by asking if they can help in any way?  "No, no, there's nothing anyone can do..."

Oh... I understand Billy!

Please donate what you are able -- Joyce cares not just for her husband, but really, she sees to the welfare of her mother, one of her daughters (disabled), her three (hyperactive!) grandsons, another daughter in her senior year of high school, and deals with a drug-addicted sister and brother who have an innate sense of when to strike for sympathy.  Then there are the twin daughters of the aforementioned sister, who are now also into drugs, and appear to have developed eating disorders.  

These are the kind of lives into which you'd like to deposit Mitt Romney for a long weekend, just to see what he might learn about his brothers and sisters.  Command, O Chief!

Their needs are great but I honestly believe you and I can help, as much as money can help, and prayers and intentions offered to the universe and God.

CLICK HERE TO GO TO BILLY'S FUNDRAZR PAGE.

Joey Keller, Lego King of the World, Needs You RIGHT NOW

Hi all.  I went to bed worried about Joey, one of the four (okay, four "or so") pediatric cancer patients that I follow via the wonderful site CaringBridge.  You can go directly to his by clicking HERE.

His cancer, like every cancer, is a terrible one.

No, that's not true.  The first line of his "story" reads:  "Joey Keller is fighting multiple relapse medulloblastoma.."

He has one of the worst, but he has the biggest hunk of faith and derring-do that clearly comes from a slightly hyper father and a stalwart mom.  And his own joyful, humble little self, of course.  I forget sometimes how unique and -- sometimes for good -- alone these kids can be, despite the hurricane of activity whirling around them.  In their aloneness, they often develop god-sight and world-sight that puts adult vision to shame.

Such is Joey, Lego Kind of the World.

Last night, while his Dad was helping him take a bath, he suffered perhaps a stroke, perhaps a seizure, and became unresponsive.  At the hospital, he remained unresponsive, although he did begin to speak some, though what he was saying was incoherent.  He's in there, though, and that's the point.

They did a CT but really need an MRI.  He just had one recently, with fairly positive results in a very negative situation.  He has tumors of the brain and, almost more scarily, up and down his spine.

His Dad is in the allied health field (that's my impression) and is an avid amateur minister, investigator of God's promises, a tough friend to the deity.  He wears me out, frankly, and bless him for the drive to keep his Lord on his or her toes.  His Mom... she is balance, and I am sure she is sick of it.

I don't think anyone believes Joey is going to survive this cancer, and I hope his Mom and Dad won't reach through my computer screen with a wicked bitch slap.  But goodness, goodness, goodness, he deserves a conscious, peaceful death.  He deserves, they deserve, to feel connected to God, to feel that nothing has been left unsaid.

His Dad wrote, at some point during the night:  "He looks around a lot and seems like he wants to talk. We feel so bad for him. He's looking at me now, the light from hallway shining on our faces. I keep thinking my alarm clock's gonna go off, and ill wake up. or like less than 2 yrs ago, he'd walk up to the side of the bed and put his hand on our shoulders and gently rub our backs Till we woke up. This can't be real-"

So please, dearest readers, do what you do, so well, on Joey's behalf, and do it now.



UPDATE, 2 PM, 9/26/2012:  From Joey's Dad:  "Quick update. The meds needed to control Joey's seizures were stopping him from breathing. Very labored, and episodes where he would stop altogether. They moved us to ICU and intubated him for many reasons. They're gonna throw kitchen sink at stopping these seizures and on a ventilator they can't stop his breathing. Priority #1. We actually don't know if labored breathing is from the meds or the seizures. So gotta stop seizures. You know, I can't keep thoughts straight. Thx for prayers. As I get more info, I'll pass on so we all can be on same page with prayers. Thank you."

UPDATE, NOON, 9/29/2012:  "We just met with the lead ICU team, and wanted to get an update out on where we are at medically. I’ll try to remember all the details. She wanted to emphasize that the Joey we knew, with almost 100% certainty, will not be the Joey we see in the future. And without getting into all of the medical specifics, his brain has suffered so much trauma and injury, they think he won’t be at the “baseline” he was before the initial seizure in the tub. I want to mention too though, that the CT scan and EEG data don’t really show anything. They are going by the “posturing” we saw and some of the neurological deficits they see now. ALTHOUGH, they said in the first 24 hours (after incident or trauma) they always see patients getting worse. After that, we have about 4-6 days to see improvement (no guarantees of any improvement, or could see dramatic recovery, they really don’t know, medically.) They think after the first seizure, his sodium crashed and flushed fluid out of his brain, thus the posturing (and potential for brain damage/death.) This is really concerning. I was standing over him, alone, praying actually, when he went into that modeling pose and to think I was watching the fluid being flushed out of his brain, and possible assault to his brain makes me sick. SO, the fact that the CT scan and the EEG don’t show anything huge (like massive brain bleed) is a positive thing. Also, he pulls away from pain, pupils respond to light, he has been stretching, sometimes will open his eyes, heart rate goes up every time I talk to him, all are really good things. On the other hand, while the drugs he’s on are sedating, we found out, not so much that he couldn’t be waking up (over time, don’t know how much, but slightly concerned it hasn’t happened yet) pulling at the vent, irritated, etc. concerns them. But it could be too early to tell. She really didn’t know much, and we told her appreciated her saying that, other than he won’t be the same Joey we knew…but didn’t say what that would look like etc. Physically? Mentally? Or to what extent we would see those deficits."


Wednesday, September 26, 2012

I'm pretty sure I don't have cerebral palsy, YAY!

Here I sit, stuck.  Playing Taylor's "It's enough to be moving on..." in alternation with "Pancho and Lefty" by my dear, dear Townes Van Zandt.  I confess to an interlude by one of Dylan's worst.  Nope, not gonna admit which one.  Take a guess, why doncha?

Blue?  Clinically depressed?  I can tell you that in the second case, one gives a royal damn about the label.

Yesterday was spent freaking out a nurse practitioner who then called in my least favorite physician in the world, so that they could "upcode" my visit, I'm sure, to some ungodly ka-ching ka-ching cost that my Obamacare-inspired PCIP insurance coverage will pay without blinking a governmental eye.

He creeped up behind me, addressed me, as a vet might announce himself to a mildly feral kitten -- which is when I was able to add something to my list of why I don't like him:  He sounds like a girl pretending to be a boy who is sensitive and therefore, in his coiffed world, immediately likeable.

All he wants to do, he girl-whispers, is listen to my lungs and heart.  Ten seconds, tops.  The NP feels better,  now that he is of the opinion that I am not dying on the premises.  The entire ten seconds, he has his free hand pushing down on my left shoulder.  Wait! Isn't there something wrong in my presentation?  Right!  Now I remember!  I don't have a freaking left shoulder anymore, so that ten seconds was excruciating and I used it to explain my heart rate of 124.

"Oh, I am so sorry," s/he almost lisps, as s/he pats me on the freaking same spot.  He doesn't know that I know that he wears what must be a very elaborate hair piece.  I'm saving that for the day I really need it.

He's the PainManagement Dood, last highlighted in this blog, I believe, with this post, "The Cash Cow Blues."

You unsympathetic types out there are sniffing, muttering, "Well, why don't you just change doctors?" Well, welcome to the War on Drugs.  I am at the stage of CRPS (and, I reckon, chronic osteomyelitis) where pharmacological management is all that's left.  "Quality of life is what matters now," is how the NP neatly put it yesterday.

I found two great pain management practices and neither would take me on because I was solely managed by medication and would not require (nor allow) "procedures."  That's code word, usually, for sympathetic block upon sympathetic block, which I have done, and done, and done, to no avail.  So it's chichi toupéed pain management dood or no one.

But I like this new NP.  She thinks I'm reasonable.

Did I tell you that they drug tested me last visit?  And ushered me into a non-accessible to the wheelchaired-in-extreme-pain restroom for the Big Pee?  It was a riot.  I dropped the cup several times on the floor, praying that no one had sprinkled their cocaine on those questionable spots.

Great news:  "We found nothing in your tox screen except what we expected to find." Yay!  She reminds me that they do this every three months.  I tell her that's interesting, because that was my first drug test in 10 years.  She said, "I wondered how you were going to get along in that bathroom." I cracked my crack joke and she did not smile.

Anyway, we took one drug away, and added another that is very similar but less likely to make me suddenly bleed out, and, as I said, we established that using these more dangerous drugs is okay because everyone and their third cousins are in agreement that I have no more treatment options and that the goal, now, as approved by all the half-step-siblings, is "quality of life."  Unbelievably, these people actually shorten it to QOL.  Seems like an obscenity.

The reason the NP thought I was dying in her office?  Hypoglycemia.  Another side effect of the drug we eliminated.  Also possibly due to taking insulin and forgetting to eat.  So Fred was running down to the pharmacy to buy candy and I was raiding the treat jar they keep at the office check-out counter.  I couldn't explain myself, so I am sure the new employee on the other side of the desk thought me, at least, ill-mannered, as I grabbed one piece of hard candy after another.  Then she watches as Fred lopes in, breathless, and throws a chocolate bar at me and lobs over an orange juice.  She did great.  Smiled politely, as if being blitzkrieged by sugar fanatics was all in a day's work.  As soon as I could speak, I mumbled "blood sugar," and she added a nod to her smile.

Of course, now I realize that she was on the phone the whole time, having an earpiece 'n all.

I have treated myself to two things, even though I am also doing a Practice Lent.  I broke my café presse several weeks ago and have been living on coffee dripdripdripped through a Melitta filter.  Here's my thinking.  I am wasting coffee, as I require it very strong and the drip method needs a hunka-hunka coffee to make that happen.  So... ha!  Discover Card had its way with me.  They've made it possible to link your Bonus Points/$ to Amazon.  And that amount paid for my new La Cafetière café presse.  The goal now is not to break this one.

The second thing?  Nothing spectacular -- but we've found a brand of muesli that we like a lot, that is sold in bulk at Amazon, on the cheap, and is delivered to the front door.

Carbon footprint?  What carbon footprint?

If you knew me, if you knew me NOW, you'd be asking, "Hey, prof, what has got you so nervous that you're mired in all this minutia?" Well, smarty-panted Reader, I am to see the neurologist tomorrow, the famed hawaiin-shirted, always-sandled neurologist, who sometimes cries.  If he cries tomorrow, I am going to slug him right in the nose.

On this day of Small Anecdote, another one to bolster your faith in the medical system:  The nurse who called me this morning about tomorrow's neuro appointment said the good doctor needed to know if I thought my spasming was due to my cerebral palsy.

So my greatest joy thus far, and which shall buoy me through every suicidal moment of this day, was my immediate and assertive (not aggressive) response:  "I'm pretty sure I don't have cerebral palsy!"

Yay, me!

(Please excuse me, all of you who DO have cerebral palsy.  I'm classless, tasteless.)

She called back about 5 minutes later to apologize profusely, emphasizing that the doctor did, indeed, know whom I was as well as my "disease processes."  Her voice sounded all red and insecure.  I felt like saying they could diagnose me with leprosy, I don't care, so long as they treat the CRPS dystonia along the way.

"It's enough to be movin' on..."  Muesli, anyone?  How about a cuppa joe?






  

Monday, September 24, 2012

more reasons to hang on to a good doctor



i've been meaning to write but things have been extraordinarily rough.  this morning, i forced myself to take care of some business, financial, medical, and the spots on the kitchen floor.  that kind of thing.

also, chasing one buddy the freakishly large kitten who had what we politely call a "cling-on," a game that he found hilarious, but which induced need of a nap in me.  the expedition was a success, i am glad to say, and buddy is now allowed back on the bed...  where his twitching, dreaming self suggests that he is reliving the fun of ridding his derrrière of stray matter.  his huge paws are twitching...

there have been many mentions in this blog of my MDVIP go-to-guy.  at my most destitute, i came up with the money to keep him as the center of my medical "team." he's just that good.  you can read about MDVIP HERE.  i cannot vouch for anyone save my guy, of course.  there are some things about the system that i still don't understand, but that's about average for me, and probably won't be an issue for smarty-panted old you, dear reader.

but i ask you, how many of you have doctors that would field an email such as this one, that i just fired off?  he's told me that he lacks time for extra research into biofilm infections and -- like everyone -- is stymied by my extensive CRPS.  that said, he's asked me to forward to him references and my "takes" on journal articles that my astute judgment deem possible sources of actual action.

gracious?  the man is gracious -- even if it is mostly the epitome of a polite and sympathetic blow-off.

this morning's email:


need order for annual echo + med adjustment + consideration for more medication adventures

 profderien@gmail.com
2:15 PM (18 minutes ago)





to X, X  bcc: me

hi,

since insurance is at 100% coverage, i thought i would try to knock off any annual testing before the end of 2012.

  • the most important thing to me is the annual echo. i called dr. w's office and they require dr. MDVIP's referral/order.  would you please ask them to call me to schedule the appointment? 

i also just pre-ordered most of my meds for the rest of the year, some rx have expired or need renewal, so i apologize in advance for the flurry of faxes that will be coming your way.  

  • through experimentation, i've come to believe that taking two 200 mg generic plaquenil helps with bone pain better than just one.  if it is okay with you (and please pardon the experimentation), could the rx be changed to that dose amount?  i have never tried MORE than 400/day... ?  anyway, this is the rx# atmedco.com.  if you want me to stick to 200 mg/day, i surely will, in which case no changes are required at medco.   200MG  Rx# X



things are pretty miserable around here, mostly due to pain, spasm, fever, sweats, no sleep or too much -- otherwise known as "the usual"!  

  • before the end of the year, i'd like to have my blood rechecked, if that makes sense, including sed rate and c-reactive protein.  i won't be returning to infectious disease dood who usually does the blood work as a matter of course.  would/could you order through quest, as there is one near our manor.

a piece of confidential health care cost gossip?  infectious disease dood's office has garnered over $275,000 since JANUARY.  can you say "wretched excess"? i know the drugs are expensive... but, please...

i am trying to do the groundwork on biofilm infections but have trouble concentrating and most of the info stresses the wonders of prevention, and the best ways to identify bugs from implanted devices (once removed) -- which is all irritating to someone who is on the other side of the thing.

  • i am very interested in trying "drugs that work through TNF-alpha blockade" -- as there are many abstracts out there pushing for more studies of these biologics in CRPS -- going after the inflammation, i guess.  i am ready to skip the studies and go right to giving something an "off-label" try.  or maybe something like enbrel/remicade/humira wouldn't even need to be "off-label"?  how's about thalidomide?  i am wondering if my insurance would be suitably impressed just by a history of my c-reactive protein scores as justification... that'd knock their insurance socks off!
  • i am also wondering if it is worth restarting "bisphosphonate-type compounds such as calcitonin, clodronate, and alendronate" -- which we stopped because i had been on them so long. i've been off of them for well over a year now.  if yes, and they're all pretty much the same, my preference is for the cheapest! i'm doing my best not to bankrupt the country, though clearly, it is too late.
  • if we scratch off methadone and ketamine, there are still some NMDA receptor antagonists i haven't ingested, namely amantadine, memantine, dextromethorphan (did you suggest this to me once?).  the discussions (anecdotal patient message boards) i've seen for dextromethorphan have a huge range of doses, but all recommend "compounded" versions rather than OTC which has alcohol in it.  amantadine seems to be used for neuropathic pain pretty frequently...  memantine's best study included a huge cohort of three patients, so i dunno... you gotta love the investment big pharma is making into CRPS.

Clin J Pain. 2006 Jun;22(5):425-9.
Pharmacologic management of complex regional pain syndrome.
Rowbotham MC.
UCSF Pain Clinical Research Center, Departments of Neurology and Anesthesia, University of California, San Francisco, School of Medicine, USA. mcrwind@itsa.ucsf.edu


Few randomized controlled trials of oral pharmacotherapy have been performed in patients with complex regional pain syndrome (CRPS). The prevalence of CRPS is uncertain. Severe and advanced cases of CRPS are easily recognized but difficult to treat and constitute a minority compared with those who meet minimum criteria for the diagnosis. Unsettled disability or liability claims limit pharmaceutical industry interest in the disorder. Many studies are small or anecdotal, or are reported on only via posters at meetings. Targeting the process of bone resorption with bisphosphonate-type compounds such as calcitonin, clodronate, and alendronate has shown efficacy in three published randomized controlled trials. Intravenous phentolamine has been studied both alone and in comparison to intravenous regional blockade or stellate ganglion block. Steroids continue to be administered by multiple routes without large-scale placebo-controlled trials. Topical medications have received little attention. There has been considerable interest in the use of thalidomide and TNF-alpha blockers for CRPS, but no published controlled trials as of yet. Numerous other oral drugs, including muscle relaxants, benzodiazepines, antidepressants, anticonvulsants, and opioids, have been reported on anecdotally. Some therapies have been the subject of early controlled studies, without subsequent follow-up (eg, ketanserin) or without an analogous well-tolerated and equally effective oral treatment (eg, intravenous ketamine). Gabapentin, tricyclic antidepressants, and opioids have been proven effective for chronic pain in disorders other than CRPS. Each has shown a broad enough spectrum of analgesic activity to be cautiously recommended for treatment of CRPS until adequate randomized controlled trials settle the issue. The relative benefit of oral medications compared with the widely used treatments of intensive physical therapy, nerve blocks, sympathectomy, intraspinally administered drugs, and neuromodulatory therapies (eg, spinal cord stimulation) remains uncertain. In summary, treatment of CRPS has received insufficient study and remains largely empirical.





your natural reaction will be that some specialist somewhere should look into all this and do any prescribing.  excuse me while i giggle, because there just aren't any brave souls lining up to help.  i am going to try to make an appointment with the hawaiian-shirted neuro-guy , but am pretty sure he no longer wants to deal with me, either. this may seem an odd complaint, but he tends to over-medicate me...

sorry to cram so much into one email.  please take your time responding, there is no rush (except for scheduling the echo and correcting the plaquenil, if that's okay).  and if you ever want to charge me for an office visit as part of dealing with such an email, i'm good with that, you brave, brave doctor man.

take care,
profderien