Honor the Fred, or else.

Fred tried to make me jealous.  He failed, miserably.          

by glittergirl

Ah, the benefits for spouses, sidekicks, and dear friends of mild short-term memory loss in those we love!

Fred is joyfully planning a coup.  Not a seizure of power, he insists, but more a revolution of celebration. He's always been ill at ease with the word "fun." It ties him in a knot, almost immediately.  You tell Fred, ":Let's have some fun!" and you'll witness facial contortions indicative of pure panic.  But if you work at it, and find some convoluted way to say it, like:  "Let's make today a better day than yesterday!" -- he's with you, he's ready, he has a referent. He almost jumps for... well, not "joy," of course, but perhaps "ascending hopefulness."

So he has volunteered to lead the Service at his place of, well, worship, on 22 December 2013.  He, uh, worships at a Unitarian Universalist affiliated congregation of militant existentialist lesbian feminists.  There has been a decline in the lesbian demographic of this exciting group, and their commitment to existentialism has always been questionable, as a majority of the membership cannot string enough defining words together to form a sentence about the post-World War II philosophy.  Which leaves militant feminists as the predominant ongoing influence.

Hank self-identifies as a Christian.  As far as I know, he's straight -- although he and I, and several friends, used to enjoy allowing others to assume we were, basically, a jaunty gay gang.  I wrote a poem about that, I think, over at AllPoetry, but don't know if I snagged a copy when I left that enterprise.  Let me see.  Be right back...

Damn, that was exciting.  I found a .zip file of my writerly "stuff," many things too personal to find posting here, but that may change according to shifts in courage, should they come.  Anyway, it's long and full of allusion but it does tell the story of our "jaunty gay gang," out to convince people at post-worship Sunday potluck picnics that yes, they did, indeed, know a gay person!  The rumors of invasion are, indeed, real! You're surrounded and we are eating your potato salad!

I'll get back to Fred's current initiative on the other side of the poem and its "Author Note."

"Peasants, Indian Nobles, and the Decline of the Tlaxcalan-Spanish Alliance"

as i write this, the defense of marriage

act seems to be circling the sucking

drain,

whether counter the clock 

or with it, i cannot tell,

though what else will determine the hemisphere?

i read the article behind these poems; fatigue set
in, i circled the drain. actually, it's better said
that i dove right in, sieve bound, no curvature, no wasted motion;

i am that sick of it.
surely there is nothing
left to say, only the abiding strength of what we know?

but i felt this way twenty years ago, as well,
when we were almost always together, all four of us,
at some point in any potato salad, fried catfish 

and slaw gathering: me and fred and ramak and alejandro.
our solution was that, together or apart,
we were all gay -- for the asking.

it was fred's idea, after his gazillionth whispered, crooked
fingered (halting and prepared-to-be-apologetic)
"fred, are you gay?"

he decided to always answer "yes," figuring and theorizing,
hoping and praying that then, at least, that person
would think they knew, at least, one gay person.

he had epidemiological visions of a spreading virus,
shedding little viral progenies, emptying the now vapid host,
having sucked and eaten its innards, free and bounding away

to spread the word: i know someone who is gay; i have a friend
who is gay.  fred hums "imagine" as he sands the frets of his guitars.
pleased, eased, now there were the four of us in the game -- but

back when there were two, when it was just me and fred,
we had the comfort of knowing others knowing
we lived together and seemed suspiciously, knowingly intimate

or, at least, weirdly close, not that we needed or required
or needed or required that knowing knowing at all, at all,
and then there came ramak --

for whom none of it was light as air, pretty as a feather, pithy
as a cold beer teachable moment, but she played.  the obsidian glint in her eye,
however, kept many a potential postulant from leading with the required question.

the butch hair, the soft breasts unbound under thin egyptian cotton tees,
her general cold courtesy, all these kept the question under lock and key
because romy was always romy, what else, who else, could romy be?

so we three hobbled along like monopoly's shoe and hat and iron,
fred and i trying to keep the joy in it, ramak sometimes giving us
the hairy eyeball.  along came alex, part alejandro, half gringo,

and the same with being gay, he first needed to know his audience,
prepare the footlights,  his traveling troupe, his imagined dresser,
but he was not in the closet, no, or if so, not

for the usual pedestrian reasons.  it was more out of castilian courtesy.
but as a game, well, and a game, you say, that we all four would play?
well, that might work, not that i don't cry in fear at night of being alone,

you understand. (and i would secretly hold fred's hand: ramak would either
redo the hairy eye or quickly wipe the hint of a tear at alejandro's crying game.)
"welcoming" church picnics were our specialty, we ate free

but were pale, all four, from the night before, so we lost some of the original
artistry, the courtly dance of far away corners coming together to hold hands
and circle, jauntily, in the middle, by the buffet tables, queens of may.

alejandro was hung over from the peculiarity of tequila one awful sunshiny
sunday morning afternoon, and thus he "snapped" -- his word, worthy of a copper's
tyranny of interrogation under a hot bare bulb -- "i just snapped, damn it,"

said alex, alejandro temporarily in barcelona

(santiago an emergency alternate),

so the four of us piled high our paper plates,

"raised high the roofbeam," 

goose-stepped over to the roots

of an ancient southern oak,

and ate and ate and ate,

til our cheeks pooched out. 

  
we were memorialized on polaroid, and what a tale that photo told, beyond
an apparent feeding frenzy.  i wore a thin jersey top with a hood
of my favorite deepest blue, the hood up, my curls defiantly creeping

out, curls no matter what i put them through. "she was just so freaking stupid,"
whisper wailed alex, stabbing what might have been chicken, but could have been
fish, "and what was there to say but 'so what if i am?' to the mousy-brown

sweet tea idiot, so much my mother i could spit."  aha, ramak nodded to me
and i lent her a bent eyebrow in return.  alex's mother was an unrecognized
but powerful female force in live performances of los reyes the gipsy kings

never introduced, just the spanish chica who carried the trills to the apex in a peasant 
bandanna blouse and blousy skirt, while they sprayed on tans under gold chains
on hairy chests over fat bellies and excluded her from the recording studio

and its royalties.  fred was oblivious to the backstory drama, didn't see his dream
game implode between jellos studded with grapes, watermelon chunks,
frisbee golf and christian volleyball, open to all.

i suggested we switch to vaudeville,

a barbershop quartet:.

fred's bearded hawk-nosed head,

my curly round-cheeked cheery face,

romy's amazingly white teeth

and sultry exoticism --

each popping up,  in harmony,

"i'm gay-y-y" --

 "i'm gay-y-y" --

 "i'm gay-y-y" --

and then an extended

holding of the line,

with jazz hands twitching

as a waving, jerky alex

hops up behind, 

boater waving, starting us all

in a slow,

flat-crowned

chorus kick,

leading a rafter rattling

(whether rafter or no)

speed increasing, voltage volting,

(Milyen volt az előadás? How was the show?)

flabbergasting

"so.  what.  if.  i.  am...

so.  what.  if.  i.  am...

o mama!  

o papa!

so.  what.  if.  i.  am...  

i'm gay!"

what really happened is that fred's dream was killed by the obvious:
a straight couple with twisted liberal tendencies,
and guilt (the woman in love with ramak,

but not gay), and alex keeping two journals,
one a  homosexual compendium of erotica that could
make a person weep, the other private password-

protected files in a folder marked "Peasants, Indian Nobles,
and the Decline of the Tlaxcalan-Spanish Alliance" on his mac.
our plan to have everyone in the world know at least one gay person

failed, failed even if we deflated the world to continents,
those continents to a country, that country to a region,
that region into little tiny counties, with towns of plastic 

red and green monopoly houses, motels, hotels,  
and b&b accomodations, monopoly's shoe, hat,
iron, and thimble jive dancing in the corner establishment saturday

nights before sunday picnics,
arguing why a gay bar cannot be a jazz club.
who to tell -- and how to tell -- the difference.

Author notes

A contest entry for: Nobody's Gay by T.H. 

This poem's title is taken from a Grinnell College Latin American Studies research paper written by Eliot Spencer in 2005, a Senior Paper requirement for certification in Latin American Studies.

It tickles me that people want to see the picture under the tree.  I am a poet, or trying. It does exist, but without Alex.  I'm staring at one of the huge tree roots, Fred is staring at me, and Ramak is glaring at the woman taking the picture -- who was in (very unrequited) love with her. Alejandro would never, ever play the game and was, at this period, I believe, having mooched all of us to death, mooching his way around South America, Spain, and Portugal.  Ramak telegraphed so well that even her willingness to play was pointless, plus she was always the same to all she met that... well, Romy was just above it all.  

So it was just me and Fred, really.  That's what I get for writing narrative stuff, I suppose, and making it plausible.

All I know is that the plausible picture of the four of us, the game, itself, driven by "welcoming" Christians and their curiosity, was all about wanting to be loved, wanting to love, and desperately needing to be able to relax into the truth and just chow down on free fried food.  We simply found a way to so structure our discomfort that we could pretend the strictures of hate, prejudice, and damnation did not exist.

Really, I should call these posts "performance art," though to call this "art" is an aggrandizement. It is such an accurate representation of the flightiness of my poor brain...

So... before that terrible poetic interlude, I was telling you about Fred's Christianity.  It emerges most often when he's hurt by some change among his friends at the existentialist congregation -- he clothes his concern and pain in feisty battle readiness, in condemning their condemnation of organized religions, especially Christianity.  

Basically, the congregation, about 30 years old now, has historically been made up of people marginalized by organized religious groups, sometimes in childhood, sometimes in young adulthood and on occasions such as coming out as gay, lesbian, or transgender.  Their faith, they say, went the way of their trust and love of the institutions that had sworn them an allegiance of support, guidance, and acceptance.  Not always, but often, the end result is a stunted thought process and a continual aggravation of wounds that never healed.

Fred says it was not always like this, not always this bitter, repulsed response to notions large and small, from stringent anti-Christian stances to degradation of men, because men are behind every bad thing that has ever occurred in human history.  Yes, the anti-male hysteria is real, and yes, I do characterize it as a "small" notion.  The men in the group are among the most liberally compassionate, pacifist, and open-minded guys you'll ever meet -- and the militant existentialist lesbian feminists all know it.  They'll even admit it in the span of a lightening strike.

Fred wields Christianity as a bat to hit the high-powered, stinging pitches that are hurled toward his strike zone, by which I mean that he is hurt and using ideology to fight back.

Hmm.  Do you hear bells ringing?

There used to be a solid core of existential philosophy study going on there, and, odd as it may sound, that study was full of fun.  Gatherings were fun, even if sometimes necessarily "deep." Now?  Existentialism is being not-so-gently shoved off the altar, left undiscussed, considered arcane -- and most members couldn't provide the sketchiest sketch of its history, meaning, or significance.

The happiness of the place (it is, after all, where I met Fred) hinged on fun, on a miraculous conjunction of existential ideas and theories for action with the lives that congregated around them.

Fred now often leaves for the 11 am service at 11:25 am.  He also sometimes goes early for a meeting or out of excitement for a scheduled speaker and ends up home at 11:15 am.  He comes home pale and sweaty, sad and angry.

He was born on Christmas Day, was Fred.  Raised in the Catholic Church, educated by nuns, he got over that abuse with the help of single malt scotches and beautiful women in Ethiopia.  He experimented with naturalism as a faith, and considered himself a modern druid for a bit.  The way he sometimes eyes certain trees, I suspect he still might.  But for several years now, he speaks with more and more respect of Christianity.

There's not a bit of evangelical fervor flying around backward in our suites here in The Manor, nor have we held Wednesday night Bible Studies (though I LOVE Bible Studies!).  Sometimes I insult Fred, hopefully without it showing, by thinking that this new faith-based man must be punking my ass.  Other times, I wish he would allow me into that precious space in his heart.

I started by saying Fred was trying to evoke my jealousy.  Little does he know that he does that every day, but we won't go down Self Pity Alley on this journey.  He got up early, as in well before noon, and as he handed me a wonderful jug of coffee, chirped "I have a lunch date." Then he stood up and grinned at me, feeling all superior and stuff.  This as I pictured the leftovers that I am counting on him (and Sven, and Bianca, and the Cabana Boy) to dispose of, while trying to appear unconcerned, and definitely not jealous.
He'd already told me about his plans over the weekend, but forgot -- so, ha!  I don't mind finishing off the incredible and perfectly spiced Spanish Omelet, complemented by a side of superior vegetarian chili.

The luncheon today is dedicated to a small group of revolutionaries plotting the goings-on for the upcoming pre-Christmas service on 22 December.  They are planning... a fun celebration of Christmas, free from any heavy wrapping in ideology, desire for conversion, or even contemplation of the lunacy of a Virgin Birth. This is more about a Jesus child, touched by God, running around nekkid as a jay bird and rejoicing in life lived well, finding the space and the spirit to befriend the frowning and judgmental, to soothe the injured.

A tree, small presents, maybe even a living tableau.  Jingle-Bells by the Ukulele Band.  Themes of love and hope, peace and good acts.  Sugar cookies.

That's my Fred.

He is excited but also, like me, tending toward "borrowing trouble." What if people refuse to come?  What if someone tries to openly denigrate Christmas?  What if he will be required to deliver a cogent thesis to explain Christianity itself?  (This is not a crazy worry.  The congregants are a hyper-educated bunch, full of professors and degreed fine arts practitioners 'n such.)

My job, I've decided, is to try and correct the course should the Christmas Celebration Cruise Ship veer from following the twinkling star.

But they'd better get with the program, those militant existentialist lesbian feminists or I won't be sending along any more savory tarts or rich mushroom polentas to those famed Wednesday night suppers and ukulele band practices.

Honor the Fred, or else.  A new commandment.

© 2013 L. Ryan

CRPS Update: The Things at the End of My Legs

Some people with CRPS undergo seasonal shifts.  For instance, I change from a reddish warm weather version of the disease marked by massive edema to a thinner blue that heralds colder weather.

Remember the Flip video camera that I dropped in the sink full of sudsy water while documenting the care and general abuse of a PICC line?  Well, the camera has come back to life.  Sort of.  It sometimes works perfectly but not when I use it with a purpose in mind.

For instance, wanting to document the beginning shift from red edematous skin to purplish shades of Fall, the camera began to record as it should but then refused, flat out REFUSED, to allow me to end the recording, short of simply powering it down.

I was hoping that weirdness wouldn't be noticeable but, of course, it is.  Nonetheless, here's the result.  I''m also documenting the excellent, fast healing of my toe and the lower right leg gouge from a few weeks back. As usual, despite the visual ickiness of the right leg -- at least in comparison to the left -- it is the left that leaves me screaming in the night. Weird stuff.

The music is The Beast in Me, sung by Nick Lowe.  Appropriate, I think.

© 2013 L. Ryan

" Admit it. You want a white Republican president again."

Strange that it is not a celebratory mood descending tonight, given that Congress has managed to -- or will soon manage to -- pass a clean Continuing Resolution just as our national credit rating was about to bite the dust.

Not so strange, really.  We are going to have to dance this dance again, and it appears that those players who delight in inflammatory falsehoods about everything from the Affordable Care Act, unfettered access to birth control, the deficit, and -- let's face it -- the black man and his family who somehow wandered into the mansion on 1600 Pennsylvania Avenue a few years back, illegal squatters, all of them, including the two dogs.

Do you remember Joe "The Plumber" Wurzelbacher who achieved an odd but familiar sort of fame during the 2008 presidential election?  He subsequently ran for Congress but lost, finally affiliated himself with the Republican Party (a true shocker), and began doing what all of us frustrated political junkies do by launching a blog.

A patriot.  A symbol.  A man with a computer.

He crossposted a piece to Joe for America.com from The Black Sphere, written by Kevin Jackson, that begins with smooth subtlety:

Admit it. You want a white Republican president again.
Now before you start feeling like you’re a racist, understand you are not.
Wanting a white Republican president doesn’t make you racist, it just makes you American.

Proving that he can dogpaddle even in the shifting tides of white water, Wurzelbacher responded to the responses to his borrowed tirade by posting this to his Facebook account:

'Let no chance to find a boogey man in a non-racist's closet go by without first taking time to blame a white guy for repeating something a black guy said...about a black guy.'

Attribution for his blog postings is sometimes murky, though after perusing a fair number of them, the tenor is crystal clear.  For example, just prior to the aforementioned liberation from racism, he published another chef d'oeuvre entitled "Does Barbara Boxer Need A Good Beating?"  It appears to be his own work, a conclusion I reach from my time spent diddling around in Comparative Literature (subcategory: acephalic anathema):

Normally this would be an inappropriate question to ask, but rules have exceptions. Senator Barbara Boxer recently compared Tea Partiers to “domestic abusers.” In her world, trying to restore fiscal sanity and prevent America from going broke is equivalent to engaging in physical violence. 

What the hell would this (insert curse words here) know about domestic abuse? Any man who married her would have to be so emasculated that he would not raise his hand without permission. Normally I am against domestic violence but she really could use a good beating to knock the stupidity out of her. Her existence is an act of abuse because the rest of us have to suffer from her feminist yapping. Even a government shutdown can’t shut her leftist trap. Her crybaby victim routine is an insult to real victims. She is the third worst Barbara in America behind Streisand and Mikulski. To all fake feminists everywhere, please shut the Sandra Fluke up.

Do I think Joe's site to be a source of influence?  No.  Do I worry about his impact on the quality of our national discourse?  Sadly, no, as it is actually an improvement over some of those congressional delegates who were, unlike Joe, duly elected.  I think I will steal from John McCain, who responded to Texas Rep. Gohmert's assertion that he consorts with Al Qaeda terrorists on a regular basis by telling NBC's Brian Williams:

On that particular issue, sometimes comments like that are made out of malice.  But if someone has no intelligence, I don’t view it as being a malicious statement. You can’t respond to that kind of thing.

Yes, I am aware that the frequent lack of response to my own various tirades might be shaded by this same Umbrella For Dolts.  I am also aware, however, that my superior insight into my own shortcomings places me at least a few ladder rungs above Brother Joe as we scale the heights of our Fool's Errand.

Where I probably top The Plumber in unnecessary rhetoric is in moments like this one -- where I cannot help but wonder why the hell this John McCain was not the John McCain who showed up under the guise of a presidential candidate.  Such an effective debater, steered by what seems an unerring sense of right and wrong, is terribly at odds with the man who tapped Sarah Palin into service and hummed out that catchy parody of "Barbara Ann" --  Bomb, bomb, bomb, bomb, bomb, bomb Iran...

Could it be that I am secretly a very forgiving person, almost Christ-like in the depth of my compassion? Nearly surgical in the precision of my dissections?

Wurzelbacher goes after Megyn Kelly for calling him racist for reproducing Kevin Jackson's wondrous journalistic crap with this pithy bitch slap:

So where is the racism? The way I got it figured, is since I’m a “white” guy and you labeled me a racist for publishing his article, Seems to me you could be implying that Kevin is an Uncle Tom? See what I did there Kelly? I didn’t mean it, just making a point.

Hmm.  Maybe I'd best put myself on a closer watch.  A shorter leash?  Hire an editor?  Consider a sabbatical?  Have my knees removed in an effort to cure the automatic jerk?  Cook a large pot of red beans and rice, liberally peppered with serranos?

Mostly, I think I'll revert to my high fever coma strategy from last week so that when I wake, the sparkling clarity of this country's political purposes can wash me clean of all sin.

Cute Innocent Lamb Photo

© 2013 L. Ryan

Intravenous IVIG in CRPS

From Lost and Tired

Of course, the banner at the top of the PubMed page reads:

PubMed is open, however it is being maintained with minimal staffing due to the lapse in government funding. Information will be updated to the extent possible, and the agency will attempt to respond to urgent operational inquiries.

Part of the reason I've not yet posted Part Two of the latest Clinical Trials updates for CRPS is precisely because they are shut down, though the staff there is also operating on a "compassionate" basis, helping people with end stage cancers find trials to try.  There are angels everywhere.  Yes, yes, I am sure there are even some GOP members who sport halos.

Maybe.

Anyway, I'm posting the abstract for this case study about immunoglobulin infusions in treating CRPS because some wider (and much older) research studies have claimed success in reducing pain -- significantly -- with as high a success rate as 30-40%.  The usual caveat seems to hold true -- that the likelihood of IVIG being effective is greatest in that magic initial 3 to 6 month period after onset.  So many people face huge battles in getting a correct diagnosis, often for years, so hearing that "3-6 month" mantra again is a bit of a downer. But as groups like RSDSA.org continue the battle for awareness and research, maybe these promising treatments will start reaching that target demographic and there will be fewer and fewer "intractable" cases of CRPS.

I took my optimism pill this morning.  That said, please do remember that this is a case study.  But heck, it was a case study that caught someone's attention about ketamine.  And from ketamine has been extrapolated experimental uses of other drugs blocking NMDA receptors -- she said, hopefully, taking her Namenda (memantine)!

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

 Clin J Pain.2013 Nov;29(11):e33-e34.
Favorable Outcome of an Acute Complex Regional Pain Syndrome With Immunoglobulin Infusions.

Medlin F, Zekeridou A, Renaud S, Kuntzer T.

Nerve-Muscle Unit, Department of Clinical Neurosciences, Lausanne University Hospital (CHUV) and University of Lausanne (UNIL), Lausanne, Switzerland.

Abstract

OBJECTIVE::
To emphasize that complex regional pain syndrome (CRPS), a disabling disorder with the implication of aberrant inflammation, vasomotor dysfunction, and maladaptive neuroplasticity, might be treated with a high dose of intravenous immunoglobulin infusions (IVIG).

METHODS::
We describe a patient who presented with CRPS in the acute phase of the disease.

RESULTS::
The CRPS developed secondary to sciatic compression in a young patient and was treated within 10 days by high-dose IVIG (2 g/kg). It resolved completely within days after infusions.

DISCUSSION::
This observational study emphasizes that high-dose IVIG may be a treatment option in the acute phase of CRPS.

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

Here is a slightly older study with a resounding cohort of participants -- all TWELVE of them -- who were past the "acute phase" of CRPS onset.  There was evidence of some pain reduction, but again, there were also methodological problems with the research.  I don't know that researchers will ever be able to establish "statistical relevancy" given the unlikelihood of ever achieving a decent number of subjects.  That's why we must sometimes give the hairy eyeball to those who mock CRPSers for our excitement over a case study of one patient -- we deal with what we have and try our darnedest to establish good science behind it.

Please excuse the funky layout below.  Blogger is punking me.

Ann Intern Med. 2010 Feb 2;152(3):152-8. doi: 10.7326/0003-4819-152-3-201002020-00006.

Intravenous immunoglobulin treatment of the complex regional pain syndrome: a randomized trial.

Goebel A, Baranowski A, Maurer K, Ghiai A, McCabe C, Ambler G.

Source

University of Liverpool, Clinical Sciences Building, University Hospital Aintree, Liverpool L9 7AL, United Kingdom.

Abstract

BACKGROUND:

Treatment of long-standing complex regional pain syndrome (CRPS) is empirical and often of limited efficacy. Preliminary data suggest that the immune system is involved in sustaining this condition and that treatment with low-dose intravenous immunoglobulin (IVIG) may substantially reduce pain in some patients.

OBJECTIVE:

To evaluate the efficacy of IVIG in patients with longstanding CRPS under randomized, controlled conditions.

DESIGN:

A randomized, double-blind, placebo-controlled crossover trial. (National Research Registry number: N0263177713; International Standard Randomised Controlled Trial Number Registry: 63918259)

SETTING:

University College London Hospitals Pain Management Centre.

PATIENTS:

Persons who had pain intensity greater than 4 on an 11-point (0 to 10) numerical rating scale and had CRPS for 6 to 30 months that was refractory to standard treatment.

INTERVENTION:

IVIG, 0.5 g/kg, and normal saline in separate treatments, divided by a washout period of at least 28 days.

MEASUREMENTS:

The primary outcome was pain intensity 6 to 19 days after the initial treatment and the crossover treatment.

RESULTS:

13 eligible participants were randomly assigned between November 2005 and May 2008; 12 completed the trial. The average pain intensity was 1.55 units lower after IVIG treatment than after saline (95% CI, 1.29 to 1.82; P < 0.001). In 3 patients, pain intensity after IVIG was less than after saline by 50% or more. No serious adverse reactions were reported.

LIMITATION:

The trial was small, and recruitment bias and chance variation could have influenced results and their interpretation.

CONCLUSION:

IVIG, 0.5 g/kg, can reduce pain in refractory CRPS. Studies are required to determine the best immunoglobulin dose, the duration of effect, and when repeated treatments are needed.

PRIMARY FUNDING SOURCE:

Association of Anaesthetists of Great Britain and Ireland, University College London Hospitals Charity, and CSL-Behring.

Comment in

• Intravenous immunoglobulin to fight complex regional pain syndromes: hopes and doubts. [Ann Intern Med. 2010]

Summary for patients in

• Ann Intern Med. 2010 Feb 2;152(3):I48.

Potential Conflicts of Interest: Disclosures can be viewed atwww.acponline.org/authors/icmje/ConflictOfInterestForms.do?msNum=M09-1292.

Requests for Single Reprints: Andreas Goebel, MD, PhD, Pain Research Institute, University of Liverpool, Clinical Sciences Building, University Hospital Aintree, Liverpool L9 7AL, United Kingdom; e-mail,andreasgoebel@rocketmail.com.

Current Author Addresses: Dr. Goebel: Pain Research Institute, University of Liverpool, Clinical Sciences Building, University Hospital Aintree, Liverpool L9 7AL, United Kingdom.

Dr. Baranowski and Mrs. Ghiai: Pain Management Centre, The National Hospital for Neurology and Neurosurgery, Queen Square, London WC1N 3BG, United Kingdom.

Dr. Maurer: Institute of Anesthesiology, University Hospital Zurich, Raemistrasse 100, 8091 Zurich, Switzerland.

Dr. McCabe: The National Hospital for Rheumatic Diseases, Upper Borough Walls, Bath BA1 1RL, United Kingdom.

Dr. Ambler: Joint University College London Hospitals/University College London Biomedical Research Unit, Ground Floor, Rosenheim Wing, 25 Grafton Way, London WC1E 6DB, United Kingdom.

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

But what would a post be without a measure of balancing skepticism?  Here is a taste of some of the immediate reaction to this 2010 study in the form of an editorial, even -- you'll have to use your "zoom" function to enlarge it, sorry!

© 2013 L. Ryan

Tarnished

There are always moments, moments that a writer friend of mine -- we'll call him Peaches -- names "golden moments." He's hoity-toity and thinks "golden moments" refers to a Thomas Wolfe's quotation from You Can't Go Home Again:

“This is man, who, if he can remember ten golden moments of joy and happiness out of all his years, ten moments unmarked by care, unseamed by aches or itches, has power to lift himself with his expiring breath and say: "I have lived upon this earth and known glory!”

That's Peaches.  He sees halos of glory around memories.  I peer at them, switching glasses, trying to get something, anything, to show itself in focus.

My eyes are still in acuity flux after the two surgeries in August, though I am reassured by everyone -- and everyone's siblings -- that this will settle down.  Still, I see the darnedest things.

I turned on the television, thinking to watch Meet the Press, keeping an eye on David Gregory's hair more than anything, but discovered I was an hour early.  So I stared at the blurby news, trying to read the headlines running along the bottom of our fairly large screen.

I read that the government, come Thursday, would have $308 in the Treasury.  Wow! I felt a sudden warmth of kinship with those clowns.  I, too, would have $308 in my treasury come Thursday!

By the time I'd ingested some good Colombian, albeit on the strong side, took loads of drugs, squirted my eyes with drops, and returned TV-side, they were still running the same under-headlines banner.

Now I could see that the U.S. of American Treasury would have $30B remaining on Thursday, the "B" representing that which I can never imagine -- billions.

Leaves me wondering how much false news I've passed along during the last few years -- how green are the remains of my golden moments, gleefully delivered and fundamentally flawed?


© 2013 L. Ryan

CRPS Pain

It's been a good while since I've written just to write, writing as if to save my life, writing just to release toxins.  Smiling, offering to make coffee, smiling, asking which coffee he'd like to have this late morning. Saying "excuse me" to the cat whose tail is in my way.  Checking the phone to see if I missed any calls. Setting the mp3 player to recharge, for the third time in 24 hours.  I put up dishes, washed what was in the sink, all interspersed with continued exhortations to Buddy the Maine Coon to please take his prehensile tail elsewhere.

Even in the night I was thinking of the cyclone hitting India.  Between my screams, I'd have a vision of a young man standing on the edge of the spiral, the whorl, knowing that the edge of a spiral, a whorl is a cutting thing.  I kept half-dreaming him saying a cold and swift "good-bye" to what must have been a mother, nodding to an old man, who had nodded first to him, which my mind-state knew was his calling to sacrifice.
He dove into the cyclone, and as I looked down the line of the cliff, the billowing chaotic universal twist not yet touching holy land, I saw young people, serene-faced, push off powerfully, smoothly, launching bodies into the eddy.

I will hate my mind when the pictures roll in, the bodies floating, the water-borne disease predictions, and, surely, the misshapen face of of what must have been a mother, the stoic cold face of an old man in charge of pointless sacrifice.

I was angry at Fred yesterday, which meant I needed to eat.  Fred had done nothing but make sure, at intervals whose meaning meant something only to him (As long as he could stand?  Whenever he remembered?  If i made a moan?  I know that once he came in when he heard me laughing.), that I was still alive, and had taken my meds.  I went to sleep Tuesday evening with a high fever, the chief odd symptom of which was exhaustion, total exhaustion.  I slept and listened to music from Tuesday evening to mid-day Friday.  No food, enough water to take those accursed meds, the spotlight of Fred's face in mine, and that stupid question:  "Are you all right?"

So I tried to be normal yesterday, my normal and a little of what might be your normal.  I cleaned a bit, chatted cheerfully, answered emails, tried, and tried, and tried.

The exhaustion returned, but not the high fever.  I settled in for a normal night of sleep-some, read-some, listen-to-music-some.

And the dystonia, the spasms, the wrenching screaming twists and deformations hit within the hour.  I promptly informed God that "no, I can't do this," and loaded up on antispasmodics, told myself the usual lullaby:  "You will stop jerking in fifteen to twenty minutes, tops.  Whatcha wanna do until then?"

I walked using my forearm crutches, in a back and forth pattern, not wanting to fall but wanting to force my legs into normal shapes.  If I don't, it's grotesque, even for me, to watch, and hell, only for me, to feel.  When my legs decided they weren't going to move any more, and this after about 3 minutes, I grabbed a cat.  I groomed the hell out of that cat, and since it happened to be Dobby, well, that was swell by him.  Why I did not suddenly leap from the bed every night to groom him with ferocity was the mystery between his ears.
The pain increased as I kept denying muscles, tendons, various sheaths and demon parts the right to transmogrify into whatever rhomboid they felt like.  It was blitzkrieg time.

Fifteen to twenty minutes, tops.

Not quite.

Try all night long.  I gave in to the screaming.  I forgave myself the weakness.

I have residual pain in my legs, a new thing to add to their usual pain.  I can only describe it as a leftover electrical burn.  And that is why I try not to put too many words -- ha -- to the work of describing CRPS pain.

It makes you sound like a maniac.

electrocution wallpapers

© 2013 L. Ryan

Room 222: The Book

Her first novel, Freshwater Road, was published by Agate Publishing, in August 2005. it received a starred review in Publishers Weekly and was selected as one of the best books of 2005 by The Washington Post, The Detroit Free Press, The Atlanta Journal Constitution, Newsday and The Chicago Tribune. The novel won the Zora Neal Hurston/Richard Wright Award for debut fiction in 2006, as well as the American Library Association's Black Caucus Award for debut fiction the same year. Freshwater Road was reprinted by Pocket Books.

Brown University commissioned Nicholas to write a staged adaptation of Freshwater Road, which was presented in May 2008.

It's a pleasure to be able to read again.  Limitations remain, mostly due to pedestrian concerns such as eye fatigue, blurry vision after intense Tea Party-induced marathon sessions of Mahjong solitaire,  and the steady weeping from this bleeping "inflammatory reaction," as well as a highly technical Boo Hoo and Creepy Red Veined Response to the eye medications that are treating it.  No, I will NOT parse that sentence.

The first book I read was one that came "highly recommended." When shall I learn that this is a phrase for dopes?  Do I not notice that the person pronouncing it has abdicated his personal recommendation in favor of some abstract compilation of... sigh... testimonials?  Freshwater Road by Denise Nicholas.  It's a sketchy narrative about a middle-class African-American college student from Detroit who joins in the voter registration drives in Mississippi during the 1964 Freedom Summer.  People are beaten. People die.  People disappear. Children die. People are intimidated.  People rise above.  There is a dalliance with the very sexy question of what it means to be black in American, according to geography.

It's very poorly written but I figured my estimations were off, that my reluctance to pick it up again had more to do with my river of inflammatory tears than with the quality of the prose.

And my innate liberalism bullied me, pushed me around, made me finish this lousy book.  So she wasn't penning a great work.  But she was pecking her way through an important period of history in which I've great interest.  I did not learn anything, except on those occasions when I stopped to check for symptoms of Narcissistic White Liberal Diseases.  Even on those occasions, I proved remarkably healthy.

The ultimate pan?  I wouldn't even suggest this for youth as yet not introduced to the 1960s' history of civil rights' struggles.  Even factual detail is hesitantly presented, the author coming across as being as out of place in her own narrative as the protagonist facing her first use of an outhouse.

I've moved on -- to a creepy book Fred read, extolling its excellent style as well as its induction of spine shimmies.  People have been pushing books at me for the last two years, the rough period of time during which reading was a great difficulty and no fun at all.  I've a dear new friend who has authored several books, two of which I began.  I intend to finish but I am still waiting for the return of the glory days of reading -- when the words don't swim in the glare of the page, when I'm not guessing at the words instead of actually reading them as written, when I have that sense of delight to crack open the volume, yogurt at the ready, a cat leaning in (they all love "yogurt time"), and giving in to another world until my eyelids get heavy.  Now I start with fluid-laden eyelids, and often hook up to my music before making it through a single printed page.

It'll get better.

But if you have to whip your eyes back into reading shape?  Don't fall for the testimonial, the glib and slick "it comes highly recommended..." There are many senses involved in the choosing of the next right book to read, and as rotten as it sounds, relying on others' recommendations (be it the Library Journal blurb or your cousin Jan's brilliant cousin) is but part of the mosaic.

Never underestimate the cover.

Or the feel of it in the hand, the heft.

Or the "Surprise Me!" option on Amazon.com.

I'm also, forgive me, partial to the publishing house.

And do not fear nonfiction when what you need is... nonfiction.  Aha.  There, I DID learn something.

Photo Credit:  Modern American History

© 2013 L. Ryan

The Shell Game for Shills: CTTC Has a New CEO

The Shell Game

Good morning, Dear Readers.

Without the least bit of a gloat and nary a reminder of the soul-sucking, money-stealing, totally bogus health claims made by CALMARE/Scrambler Therapy adherents, the "technology" that has kept CTTC (Competitive Technologies, Inc.) in the top spot of my list of CRPS Scams, I come before you with a heavy heart to announce that the robust company stock is for sale today at a steamy rate of .0553 -- that's per share, not the discounted price for the whole snake oil business, you chuckleheads!

As you know, I keep one ear to the ground -- not by choice, of course; it's more adherence to gravity -- and the word is that tomorrow is BOGO Day for CTTC.

On a more serious note, Competitive Technologies, "patent" capitalists, has come up with another filing to submit to the SEC.  I knew they'd get the hang of notifying the SEC of every smarmy, desperate move one day, after all that time of being unable to throw together something as simple as an earnings report equipped with super-glued pasties spinning the rip-off of people in severe and constant pain.  Just as they circle the drain, they master the art of big business!

It has to do with some staffing issues.  Here's the press release version of it:

FAIRFIELD, CT--(Marketwired - Oct 4, 2013) - The Board of Directors of Competitive Technologies, Inc., (OTCQX: CTTC) (CTI), today announced the appointment of Conrad F. Mir as President and chief executive officer, with full responsibility for running the corporation, and as a member of the Board of Directors. Mr. Mir will also serve as interim chief financial officer while the Board of Directors commences a search process to identify a suitable candidate to fill the role on a permanent basis. 

"With Mr. Mir's expertise in the micro-cap biotechnology space, along with his experience turning around distressed biotech companies, CTI has the right leadership in place to execute its corporate reengineering plan and enhance long-term shareholder value," said Peter Brennan, chairman of the Board of Directors of CTI. 

Mr. Mir has been mandated to implement a corporate reengineering plan (Plan), which he designed and presented to the Board of Directors. The Plan reengineers CTI's core business, cuts expenses, develops the wound care and bone technologies, and furthers our flagship Calmare© platform. 

The Board of Directors also announced the acceptance of Carl O'Connell's resignation as CEO. Mr. O'Connell has chosen to pursue other business opportunities, but will remain on the Board of Directors to provide continuity and ensure the Plan's success. He has agreed to serve as a special advisor to CTI in various medical technology capacities, including the ongoing development of Calmare. 

"Carl has a wealth of knowledge in the medical device field and will continue to be an instrumental part of the CTI team through his direction and guidance in the board room," added Mr. Brennan. 

In addition, CTI will not extend its consulting agreement with Johnnie Johnson, chief financial officer and consultant to CTI. The company is indebted to his hard work and wishes him success in future endeavors. 

About Mr. Mir
Mr. Mir has over twenty years of investment banking, financial structuring, and corporate reengineering experience. He has served in various executive management roles and on the Board of Directors of several companies in the biotechnology industry. Most recently, Mr. Mir was CFO of Pressure BioSciences, Inc., a sample preparation company advancing its proprietary pressure cycling technology. Before that, he was chairman and CEO of Genetic Immunity, Inc., a plasmid, DNA company in the HIV space, and was the executive director of Advaxis, Inc., a vaccine company. Over the last five years, he was responsible for raising more than $40 million in growth capital and broadening corporate reach to new investors and current shareholders. 

Conrad has worked for several investment banks including Sanford C. Bernstein, First Liberty Investment Group, and Nomura Securities International. He holds a BS/BA in Economics and English with special concentrations in Mathematics and Physics from New York University. He is a classically trained pianist and teacher, and a student of the martial arts. He is married with two children, alumni council chairman of Tau Kappa Epsilon fraternity - Tau Alpha chapter (NYU), and a member of NIRI. 

About the Company
Competitive Technologies Inc., (CTI) is a biotechnology company developing and commercializing innovative products and technologies. CTI is the licensed distributor of the non-invasive Calmare® pain therapy medical device, which incorporates the biophysical "Scrambler Therapy"® technology developed to treat neuropathic and cancer-derived pain by Professor Giuseppe Marineo.

[I eliminated the "Forward-Looking Statements" pro forma paragraph because of the dangers it imposed on readers -- a possible choking hazard, a means to the inadvertent snort of hot coffee into sinus cavities, etc.]

The Calmare device is currently being manufactured for sale by GEOMC Co., Ltd. of Seoul, South Korea.
Scrambler Therapy®: www.scramblertherapy.org/english.htm
Calmare®: www.calmarett.com
CTI: www.competitivetech.net 

Contact:Competitive Technologies, Inc.
Conrad Mir
President and CEOEmail Contact
973.798.8882 

JV Public Relations
Janet Vasquez
Managing DirectorEmail Contact
212.645.5498

Feeling duly diligent, I looked into the health of the boat from which Conrad Mir debarked. Pressure BioSciences, Inc and its 12 employees can boast a net profit margin for this year's second quarter of -297.99% , quite the decline from the -278.64% deficit for all of 2012.  They did post an improvement in operating margin, tightening that figure to a satisfying -239.84%.  Remember that old adage:   "If your business sustains a negative operating margin for too long, you might need additional funding"!

Oh, and if you are a neophyte investor, like me, you might want to heed Investipedia's advice about profit margins:

• This ratio is not useful for companies losing money, since they have no profit.
• A low profit margin can indicate pricing strategy and/or the impact competition has on margins.

Now, I have to say that Pressure BioSciences, Inc has much more interesting language in its "Forward Looking Statements" section than does poor Competitive Technologies, Inc.  For instance:

Further, given the uncertainty in the capital markets and the current status of the Company’s product development and commercialization activities, there can be no assurance that the Company will secure the additional capital necessary to fund its operations beyond September 2013 on acceptable terms, if at all. 

Not to sully the fine name of Yankee's pitcher Mariano Rivera, I am wondering if we might not hang the moniker of "The Closer" on Mr. Mir. Given that his tenure with Pressure BioSciences began in December 2012 and ended with such a huge leap up the rungs of corporate laddership in September 2013, we might even extend that nickname to another favored by that awesome relief pitcher:  "The Sandman."

Oops!  And "oops" is never a good omen!  I incorrectly calculated the time Mr. Mir spent leading Pressure Biosciences.  He managed to serve as CEO of another biotech endeavor, Genetic Immunity, Inc, in his free time before landing at CTTC.  Genetic Immunity, Inc is a subsidiary of Power of the Dream Ventures, Inc. [O Lord, take me now!] Power of the Dream Ventures, Inc is trading today at a whopping four cents.

Power of the Dream Ventures, Inc., (PDV), incorporated on August 17, 2006, is a holding company focused on technology acquisition and development enabling the delivery of concepts and ready to market products to the international market place. The Company develops, acquire, license or co-develop technologies that originates exclusively in Hungary... As of December 31, 2011, the Company had only realized limited revenues from its discontinued TothTelescope project and had not realized any revenues from other inventions.

The keenest review I could find for the TothTelescope was on a forum for telescope enthusiasts.  Rick said:
"I would be *HIGHLY* (I can't emphasize "HIGHLY" enough) suspect of this scope... The comments I have seen on Astromart and Yahoo BinocularAstronomy about this product echo this....someone even thought the website was meant to be a joke. I'm afraid it is meant to be a scam."

A joke.
A scam.
My, but the world is round, and the bean shuffled seamlessly from one shell to another, confounding even the most keen-eyed players of the game.

At least, in Mr. Mir's past, the sham toys don't seem to be aimed at desperate people living lives of declining quality, full of intense and unrelenting pain.  The pain to which he has limited himself -- until now -- appears to have been the familiar marketplace woe of separating a person from his or her money.

In keeping with my consistent attitude of respect for CTTC and their pseudoscientific, testimonial approach to business, tempered with the ardent compassion of a mature Marquis de Sade, I bid adieu to Carl O'Connell.  He's been the subject of much awe, proving worried parents of college students wrong by audaciously turning a degree in psychology into the fodder needed for growing companies in the related fields of "Neurosurgery, Ophthalmology, Orthopedics-Spine, ENT and Dentistry." You've got to figure Carl will land on his feet.








© 2013 L. Ryan

Dear President Obama: My Experience at the HealthCare.gov Marketplace

Hail to the Chief we have chosen for the nation, 

Hail to the Chief! We salute him, one and all. 

Hail to the Chief, as we pledge cooperation 

In proud fulfillment of a great, noble call. 

Yours is the aim to make this grand country grander, 

This you will do, that's our strong, firm belief. 

Hail to the one we selected as commander, 

Hail to the President! Hail to the Chief! 

Dear President Obama:

Every nerve ending in mine body is frayed, frazzled.

I began the search for coverage via the HealthCare.gov website promptly on September 13.  I know, it didn't go into effect until October 1, 2013, but I was anxious.  At that time, there was but a single insurance company in the bustling marketplace and since easily distraught, I became distraught.  Which led me into the arms of a very nice, calm, optimistic "navigator" -- our helpmates through this process -- Bill Rencher of Georgia Watch.

[Four Ruffles and Fluorishes for him, too!]

Since 1 October, I've been pestering the website dozens of times a day and receiving nothing but the the most polite error messages ever seen in cyberdom.  Repulsed, refused, unrecognized, I had about given up hope, despite the reassurances that the bugs in the system were slowly but surely being smushed into little bug pieces.  A carapace here, long sticky legs there, bulbous eyes strewn about.  Exoskeletons piling up, and with the government shut down, no one to sweep up the entomological detritus.  I say send 'em all to "Cry Me A River" Boehner.

Usually, Mr. President, I give no hints as to my political persuasions.  Yes, I used the plural, for like Whitman I contradict myself, I am large, I contain multitudes.  Ahem.

This morning, at 5 am, revolted by the idea of getting up to do something profitable for the domestic brood around me, I grabbed the computer and hit HealthCare.gov with something like a vengeance, but definitely with weepy eyes and no coffee.

After diddling around a bit, I created a new profile, ditched the old one, and kaboom, shazaam, wowza -- I was in!  Then I screwed up and had to call one of those blessèd telephone helpers, who was also confounded but wished me well.  I think, Mr. President, that she ended up helping out somehow, for a mere half-hour later, the glitch slid into the background of things.  It didn't disappear, but I was able to navigate from screen to screen and ignore the hell out of it.

Navigator Rencher, who helped calm the waters in September, had made several predictions about what my best options might turn out to be, coming from the Affordable Care Act's PCIP program, which ends precisely on 31 December.

He was right on all counts.  If I take up gambling, I'm bringing him with me to the racetrack.

If I could sneak past the First Lady and give you a prim kiss on the forehead, I'd do it in a heartbeat.  But what with all the shooting going on up there, they'd drop me with a head shot, for sure. (Gun control, anyone?  No destruction of the Second Amendment, just no guns for crazy people, registration and permits for all, no assault weaponry or accompanying ordinance, and equal restraint from law enforcement, including the Secret Service and Capitol Cops)

Since I doubt you'd break out into any Al Green on my account, I'll just say this here, in the safe haven of a nondescript blog:  God bless you, and thank you, President Obama.  I am a person with loads of physical woes that are constantly ganging up on my meager finances and limited sanity -- I worry, you see.  I don't want to be a victim, or whine about entitlement.  I don't want to bankrupt this good country.  But damn it, I need help.  My entire work life was dedicated to turning out well-educated citizens, both at university and at the proverbial "urban" high school level. I put my life at risk substitute teaching for the little ones, too, those cagey rug rats!  And I worked in Middle Schools where my status as a rube spread like wildfire, and the tweens often had me cornered between desk and blackboard, forcing me to throw chalk and lob erasers as a distraction.

In all seriousness, I had my life threatened and a student broke my hip in an attempt to escape capture by the kind and courteous police-people chasing him.  When I came back to work, one of my homeroom seniors stole my walker. To this day, I am convinced he was simply finding a novel way to encourage my physical therapy progress...

I was a GREAT teacher, Mr. President.  I loved my subject, I instilled a love for it in whomever the registrars put before me, and my students reveled in the concept of critical thinking and superb writing.  I'm just sayin'.  But these days, living on 60% of my year 2000 salary, no adjustment for the crazed costs of living, I need a little help.

Ted Kennedy would be bear-hugging you about now.

That website is going to drive many a USAmerican bonkers.  People unfamiliar with the terminology and the mathematics of health insurance are going to be breaking the backs of the Emergency Departments around the country as their heads begin to explode. I hope that was worked into the cost analyses.  But, like me, they will figure it out.  They will work with the outstanding navigators in their area, the phone wizards with infinite patience, and the online tech folk who speak plainly and make real suggestions -- even if those suggestions are initially aggravating.

I am now insured -- including a separate basic dental policy -- for less than what ACA's PCIP (a wondrous creation, that!) was charging. There's a whopper of a deductible awaiting me, and some nasty negotiations over medication formularies, and a doctor to switch out (but I've been secretly wanting to lose his Hoity-Toity-ness for some time, anyway).

And then there's the fear that this is all a dream.  That I filled something out wrong.

If I could throw chalk at a few Republicans for you -- I'd be up there in a minute.  But again, Mr. President, I don't want my pedagogical corrective measures to be misconstrued as some sort of attack, thereby ending my entretien with the GOP by a bullet square between my eyes.

Anyway, thanks.

You've done a great thing.

Sincerely,
Me and all the Gang at Marlinspike Hall
Tête de Hergé
(West of the Lone Alp)

P.S.  Should you and your family ever need access to an unmappable, unflappable resort that is impervious to GPS systems, Captain Haddock has ordered us to keep one of our finest wings ready.  He has even offered to ferry you here past the sharp eyes of your protective service, courtesy of an inexplicable undersea network of blackholed miniature submarine passages, all of which end nicely in our moat.

P.S.S. I decided to repost, just under this new letter to you, an older one, so as to aggrandize the scope of my experiences with obtaining heatlh insurance under your administration.  Let's call them bookends.  There are other mentions of you throughout this blog, as you've probably surmised.  My apologies for some of them.  There is even a shot of you in a video made at one of my lowest moments, but even that connection made for a "sí, se puede" rallying cry.

© 2013 L. Ryan

Repost: Dear President Obama

First published July 29, 2010, then again on November 7, 2012, and now brought out again and brushed off on October 6, 2013.

Sometimes it is good to look back, to see how things were, how impossible the situation seemed, and, having come out the other side with only minor wounds, to be grateful.

So let this be a companion piece to today's bookend of rejoicing: Dear President Obama: My Experience at the HealthCare.gov Marketplace.

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

Dear President Obama,

This is a follow-up letter to the one I wrote you exactly one year ago.  I thought you might like an update.

It's been a long time since I cried tears of happiness, and I would like to thank you for creating the opportunity for me to sit here like a complete nitwit, boohooing my teeny-tiny brains out.

Truth be told, the occasional blissful moment in an excellent movie can provoke a brief weep -- but tonight, we're talking floodgates, and bitter saline drawn for release from the Secret Inner Pool.

On September 30, 2009, I became one of the many uninsured.  That's no great story, no Big Whoop, as the kids used to say, and I still do.

One of the many things I admire about you and your administration is your willingness to hear individual stories, and to believe in the integrity of the storytellers.  You don't ridicule instances, you don't seem to fear being overwhelmed by them.

Already permanently disabled by a severe case of one of the most severe of pain syndromes, CRPS/RSD [Complex Regional Pain Syndrome/Reflex Sympathetic Dystrophy], lupus [SLE], avascular necrosis/osteonecrosis [AVN/ON], and Some Other Annoying Crap [SOAC] -- it was a real blow to my quality, and even hope of, life to come down with osteomyelitis in my prosthetic shoulders and in the long arm bones themselves.

A complicated but not unmanageable situation, given enough Local Talent, and I am blessed with Local Talent Galore.  There are three excellent medical schools within spitting distance of Marlinspike Hall.

The Author of My Story decided to spice things up with plot twists:  Make the offending bacteria be so obscure, nasty, and recalcitrant that it could not be identified by the wily microbiologist's eye and proved resistant to any antibiotic made by mortal man;  Create such a snarl of confusion that even the we-have-seen-everything, ennui-stricken researchers at the CDC threw their hands in the air, preferring an honest Ebola virus to my obscure domestic germs;  Dictate that the conditions under which these bacterial cultures could be successfully grown existed only in the warm, moist, rum-soaked environment of my shoulders.

Each shoulder having previously been replaced, the prostheses had to be removed.  Surgical concrete laced with all sorts of charms and amulets took their place for periods of up to 3 months, and then, most often, had to be replaced with new ones, as surgical concrete, like all other things in my life at this point, tends toward entropy.  Seven surgeries, President Obama, in the space of 18 months.  Five stays in ICU, three stints on a ventilator, and two resuscitations.  A partridge in a pear tree. 

It was not easy.

Lest you think that the drama lessened between sessions in the operating room, I also single-handedly supported a cottage industry of infectious disease warriors, and co-opted all the free time of Marlinspike Hall's Manor Denizens.  Back and forth we went, inserting and tending PICC lines, infusing intravenous antibiotics several times a day, making blood offerings to appease the demanding serum levels of Haute Society Pestilence, and so on, and so forth.

None of this would have been possible, of course, without excellent insurance coverage.  It was thanks to the reluctant involvement of the Grand PooPah of Tête de Hergé's Insurance Commission that I had any coverage at all once our version of COBRA ran out (here, it's THE ASP).  I was already in a high risk pool, but it was an unregulated pool over which the Grand PooPah could only utter tsk:tsk:tsk! 

BCBS of Tête de Herge is a wily enterprise, and my insurance premiums began to rise, rise, and then rise a lot more.  Finally, it was decreed that as of October 1, 2009, I was to pay, in U. S. Dollars, $1513 a month, in addition to the annual $5000 deductible/out-of-pocket expenses.  The cost of being insured would now amount to 96.6% of my private disability income of $1996.20/month, an amount never adjusted for inflation, despite the spiraling costs of Everything, Everywhere.

Of course, we all know that if they would just accept Lumps of Pure Gold Studded With Blue Topaz, there'd be no problem.  It's this Social Contract involving Oblong Green Rags of Value that is screwing everything up.  Some proprietary blend of cotton, silk, and linen is worth more than my Studded Lumps?  I don't think so.

Anyway, a 41% hike in the space of 9 months finally forced me into the scary position of being in the middle of a health crisis without benefit of insurance.

If you read my blog, and we all know you don't, you would read account after account of daily fever, pain, sweats, fatigue, and the certainty that I would need to cheer up to be suicidal.  It's nothing but a broken record, and to make matters worse?  I now write like H. P. Lovecraft.

I almost went permanently insane during the Great Health Care Debate, especially when it looked like the Tea Baggers might succeed in excluding Aliens from Tête de Hergé (très décédé, d'ailleurs).  ArseHoles!

You about lost me as a supporter when you stopped fighting for the Public Option, and at several other murky junctures.  I lost a lot of my natural optimism, my well known spunk. When the package was passed, it was not clear to me what was actually about to happen, if anything.  Everyone said it would be years before the real impact of reform would be felt.

But whispers in the dark persisted, and the word on our unpaved back-country roads was that some sort of High Risk Pool for people labelled uninsurable was going to be available... in July 2010!

Tall tales went the rounds about some website somewhere, rumored to be PCIP.gov, that explained the possibilities in accessible language and without endless complication.

I went, myself, to the fabled site -- I saw it with my own eyes -- It is real, it is real!

There was one hoop through which I had to leap, and leap I did.  The application for coverage by the Pre-Existing Condition Insurance Plan required that a rejection letter based on pre-existing conditions be attached for eligibility.  The letter must date from within 6 months of the time of application.

Last weekend, I spent four hours filling out an insurance application from InHumana, detailing every instance of hospitalization, complication, treatment, diagnostic procedure, and ingrown toenail, and sent it off to Underwriter Land with fervent hopes for swift and complete rejection.

My rejection letter, which Fred is having framed, arrived today.  It is riotously funny, a moment of hilarity in the midst of my Personal Health Tragedy Epic Saga -- every Long Boring Story needs comic relief.

Sincere in my intent to make application to the PCIP, I poured myself a stiff one this evening, downloaded the .pdf file, printed it out, and girded my loins.

Five minutes later, I was done.

My vision blurred as I read about provisions for those who qualify within Tête de Hergé's territory.  I finally made out that my monthly premium would be $495. 

My hands began to shake when I stumbled on this:

In addition to your monthly premium, you will pay other costs. Covered in-network services are subject to a $2,500 annual deductible (except for preventive services) before the plan starts to pay benefits. Once you’ve met the deductible, you will pay a $25 copayment for doctor visits, $4 to $30 for most drugs at a retail pharmacy for the first two prescriptions and 50% of the cost of the prescriptions after that. If you use mail order, you will pay $10 for generic drugs or $75 for brand drugs on the plan formulary for a 90 day supply. You will pay 20% of the cost of any other covered benefits received from a network provider. Your out-of-pocket costs cannot be more than $5,950 per year.

And it was not long before I was weeping.  Fred, too.  La Bonne et Belle Bianca Castafiore even joined in, though she is well-insured by her operatic company.  Unfortunately, she pays more than your average soprano due to a, uhhh, errr... Cyst Situation.  But we won't talk about that...

I would love to shake your hand and give you a hug, maybe even a kiss on the cheek.  Michelle, too.  The girls and the darned dog, as well.  I don't think the Secret Service would much like that, so please accept the enclosed 2010 ManorFest TeeShirts for you and your whole family, instead.

I hope we guessed right on sizes, as they tend to run small.

Sincerely,

The Retired Educator
Your Greatest Fan




If you have serious medical conditions and cannot get insurance because of them -- this is a good place for helpful information and suggestions: Foundation for Health Coverage Education/Coverage for All.
photo credit: Steve Hopson