The Texas Sentinel's Lonestar Larry 'Splains "Texaz' Otha Death Pinaltee"

From the Texas Sentinel (Readings for Texas Gangstas - thus one from the MORNIN’  EDISHUN)

The Texas Sentinel. (Brenham, Tex.), Vol. 4, No. 34, Ed. 1 Wednesday, November 9, 1881

Texaz’ Otha Death Pinaltee

By Lonestar Larry

I be receive' permissyun ta shaa my patiintz’ ztoriez, an' change' o'omitte' some namez. Dis be a personal essay; da viewz be my own an' do not reflect dose uv St. Vincint’z Crib o'St. Vincint’z Studint-Run Free Clinic.

Da firs' patiint who calle' me “docta” die' a few winterz ago. I met him at da St. Vincint’z Studint-Run Free Clinic on Galveston Island. I wuz a firs'-year medical studint den, an' da disease n' dude body baffle' me. Dude bel wuz swollen, dude eyez wuz yellow an' dude blood teztz wuz all awry. It hurt wen dude swallowe' an' dude urine stank.

I saw him every Thursday afternoon. I would do a physical exam, holla ta him, an' consult wiff da docta. We ran blood countz an' wrote a prescripshun fo'n antacid—not da bes' medicashun, buh one you can get fo'$4 a month. Dude disease seeme' zeriouz, buh we couldn’t diagnose him at da free clinic cuz da teztz nee'e' ta do so—a CT scan, a biopsy uv da liva, a tes' ta look fo'canca cellz n' da fluid n' dude bel—be beyond our financial reach.

Dude starte' calln' me “Dr. Rachel.” Wen dude pain gots so bad dat dude couldn’t eat, we decide' ta send him ta da emerginsee room. It wuz not 'n easy decisyun.

Dere’z a popular myth dat da uninsure'—n' Texaz, dat’z 25 percint uv uz—can alwayz get medical caa thro emerginsee roomz. Te' Cruz haz argue' dat it be “much cheapa ta provide emerginsee caa den it be ta expand Medicaid,” an' Rick Perry haz claime' dat Texanz prefa da ER system. Da myth be base' on a 1986 federal law calle' da Emerginsee Medical Treatmint an' Laba Act (EMTALA), wich ztatez dat hozpitalz wiff emerginsee roomz be ta accept an' stabilize patiintz who be n' laba o'who be 'n acute medical condishun dat threatinz life o'limb. Dat word “stabilize” be key: Hospital ERz don’t be ta treat you. Day jus' be ta patch you up ta da point whea you’a not active dyn'. Also, hozpitalz charge fo'ER caa, an' usual send patiintz ta collecshunz wen day cannot pay.

My patiint wen ta da ER, buh didn’t get treatmint. Altho dude wuz obviouz sick, it wasn’t 'n emerginsee dat threatine' life o'limb. Dude came back ta St. Vincint’z, whea I wen thro my routine: conversashun, vital zignz, physical exam. We laughe' a lot, even tho we both knew it wuz a bad situashun.

One nite, a homie calle' ta say dat my patiint wuz n' da hospital. Dude’d final gotten so anemic dat dude couldn’t catch dude breath, an' da Universitee uv Texaz Medical Branch (UTMB), whea I am a studint, took him n'. My homie emaile' me da rezultz uv dude CT zcanz: Dere wuz canca n' dude kidney, dude liva an' dude lungz. It mus' be do be spreadn' ova da weekz dat dude’d do be comn' inta St. Vincint’z.

I wen ta visit him dat nite. “Dere’z my docta!” dude calle' out wen dude saw me. I sat next ta him, an' dude explaine' dat dude wuz waitn' ta call dude sista until day hollad him whetha o'not da canca wuz “bad.”

“It mite be one uv dose real treatable kindz uv cancerz,” dude say. I nodde' uncomfortab. We talke' fo'a while, an' wen I left dude say, “Well now you know whea I am, so you can come visit me.”

I neva came back. I wuz too ashame', an' too ear n' my trainn' ta even recognize why I felt dat way. Afta all, I had done everythn' I could—what did I be ta feel ashame' uv?

UTMB sent him ta hospice, an' dude die' at crib a few monthz lata. I read dude obituary n' da Galveston Countee Dai Nuze.


Da shame haz stuck wiff me thro my medical trainn'—not on from my firs' patiint, buh from many moe. I am now a directa uv da free clinic. It’z a voluntea posishun. I love my patiintz, an' I love ben' able ta help many who nee' primary caa: blood passua control, pap zmearz, diabetez managemint. We even do some specialtee caa. Buh da free clinic be also whea some peeps learn dat dere be no hope fo'da chemotherapy o'surgery dat day nee' buh can’t afford. Wen UTMB refuzez ta treat them, it fallz ta uz ta tell them dat day will die uv dizeazez dat be, n' fact, treatable.

St. Vincint’z be da primary caa provida fo'moe den 2,000 patiintz acrozz Southeas' Texaz. Our catchmint area be a strip uv coastal plain strung wiff barria izlandz. Drive inland an' you start ta see live oakz; jet toward da coas' an' da oil refineriez loom up ova neighborhoodz. Da mos' pollutn' refinery n' da nashun be huhhh, n' Texaz Citee. Our patiintz be factory workerz, laborerz, laid-off healthcaa workerz, da peeps behind da counterz uv seafood reztaurantz.

Mos' uv our patiintz come from Galveston an' Brazoria countiez, buh some drive two hourz from Port Arthur o'ova from Orange, near da Texaz-Louisiana borda, ta get ta uz. Dat’z how hard it be ta see a docta n' Southeas' Texaz: Peeps take a day off work ta drive two hourz ta a studint-run clinic dat can on provide basic caa.

Da clinic be overseen by facultee phyzicianz—UTMB docz—who see every patiint along wiff uz ztudintz an' prescribe medicashunz. Deez doctorz be volunteerz. We be not a UTMB clinic, buh we depind on UTMB, wich be twintee blockz from St. Vincint’z, fo'trainn' our studint volunteerz, fo'liabilitee insurance an' fo'runnn' our blood teztz an' otha labz. UTMB haz given uz grantz, includn' one dat helpe' uz get our electronic medical recordz system, an' fundz a nurse-manage' day clinic fo'da uninsure' at St. Vincint’z Crib.

Buh UTMB be no longa da state-subsidize' charitee hospital it use' ta be. Da changez began befoa Hurricane Ike n' 2008. Buh afta da storm, UTMB adminiztratorz drastical cut charitee caa an' move' clinicz ta da mainland, whea dere be moe payn' patiintz. Da old motto “Huhhh fo'da Health uv Texaz” wuz replace' by “Workn' togetha ta work wonderz.” Among dose wonderz be a new surgical towa an' a plan ta capitalize on Galveston’z semi-tropical charm by attractn' wealthy healthcaa touriztz from abroad. Medical caa fo'da poa be not, apparint, among da wonderz. Whereaz UTMB accepte' 77 percint uv charitee referralz n' 2005, it wuz on takn' 9 percint n' 2011.

UTMB azcribez deez changez ta financial strain from Hurricane Ike, da countee’z inabilitee ta negotiate a suitable indigint-caa contract an' lozz uv state fundn'. Da state blamez budget zhortfallz. Da Affordable Caa Act, betta known az Obamacaa, could be do be a bigass relief. Howeva, Gov. Rick Perry rejecte' billyunz uv dollarz n' federal fundn' ta expand Medicaid, fundn' dat should be broute ta accezz ta moe den a millyun Texanz, includn' many St. Vincint’z patiintz.

Perry’z refusal be catastrofic health polisee. Fo'patiintz, it meanz dat seekn' medical caa will still aquia riskn' bankruptsee, an' may lead nowhea. Fo'doctorz, da message wuz not on dat our patiintz’ livez don’t matta, buh also dat medicine—our old professyun, so full uv peeps who ginuine want ta help otherz—will continue ta be part uv da economic machine dat entrinchez povertee. Wen da poa seek our help, day often wind up wiff crippln' debt.

Cuz day can no longa count on UTMB ta accept they patiintz, UTMB doctorz now refa many ta St. Vincint’z. Day’ll treat someone fo'a heart attack (cuz dat’z 'n emerginsee covere' by EMTALA), den refa them ta uz fo'follow-up, even tho we don’t be a cardiologis'. Day’ll stabilize a patiint afta da beotch third stroke, put da beotch on blood thinnerz an' send da beotch ta uz. Day once sent uz, from da ER, a cat wiff a broken arm. Day put da arm n' a splint an' referre' him ta uz. What did day expect uz ta do—orthopedic surgery? Put on a cas'? We don’t even be 'n x-ray machine.

I do not think dat deez referralz be 'n official polisee. Ratha, day be da work uv doctorz an' nurzez tryn' ta do somethn' fo'patiintz who be do be refuse' caa thro da financial screinn' procezz at da hospital. Forma St. Vincint’z leada Dr. Merle Linihan haz describe' da clinic az a “moral safetee valve.” It protectz UTMB from confrontn' da conzequincez uv da state’z refusal ta provide caa.

Among dose conzequincez be da deathz uv da poa. Az Howard Brody, directa uv da Institute fo'da Medical Humanitiez, haz shown, 9,000 Texanz pa year will die needlezz az a result uv our failua ta expand Medicaid. Howeva, cuz dyn' patiintz be often too sick, exhauste' an' wracke' wiff pain ta protes', UTMB an' ztatez like Texaz aren’t force' ta reckon wiff da conzequincez uv they polisee decisyunz.


Cuz da very sick an' da dyn' may not be able ta holla about deez izzuez, health-caa providerz—particular da providerz uv da so-calle' “safetee net”—mus' do so. It be n' our clinicz, n' da bodiez uv our patiintz, whea da conzequincez get playe' out.

Danielle haz schizofrinia, an' da beotch’z young, an' da beotch ztrugglez wiff da medicashunz. Wen we holla, dere be long gapz n' da conversashun whea, I think, da beotch hearz otha voicez. N' one uv deez gapz, I notice da sun slantn' n' whea it’z beginnn' ta set beyond da ship channel. Dere’z gospel music streamn' out ova da basketball court from da zpeakerz mounte' on da side uv da communitee cinta. I am reminde' uv what da directa uv da communitee cinta, 'n Epispo-poal minista, believez: Every patiint be a miracle. Da St. Vincint’z Crib motto be “'n oaziz uv hope, expectn' miraclez.”

Danielle lookz up an' ztarez rite at me. “Huhhh’z what I want ta know,” da beotch zayz. “Why be we so poa?”

St. Vincint’z Crib, wich hoztz da free clinic, be a historical African-American communitee cinta n' da lowes'-income hood on our island, next ta whea da housn' projectz wuz befoa day wuz condemne'. Da federal fedz ordere' Galveston ta rebuild da public housn' afta Hurricane Ike, buh da citee refuse'. We electe' a maya who ran on 'n explicit anti-public housn' platform. Jus' like da medical system, da citee knowz whose livez matta.

Now, dandelyunz grow n' da emptee lotz left afta Ike floode' da hood. Peeps sit on da ragge', crackn' curbz, an' run wheelchairz rite down da middle uv da skreet cuz da zidewalkz tend ta end n' grassy fieldz o'lil precipicez.

Da communitee cinta employz a peep ta stand n' da skreet an' walk uz ta our carz afta clinic if we want. Who be dude protectn' uz from, I wonda. Our patiintz?

N' my second year uv medical school, I took a small-group course wiff a famouz terrifyn' surgeon. Dude hollad uz dude moral motto: “A physician neva takez away hope.”

I neva figure' out how dat motto could guide doctorz thro a system whea our patiintz be dyn' from treatable dizeazez. Part uv my job, it zeemz, be precise dat: ta sit down wiff patiintz an', az gent az possible, take away hope.

Consida Vanessa an' Jimmy. Day met n' New Orleanz wen da beotch wuz 18. Da beotch wuz workn' cleann' motelz, an' dude took da beotch on a tour uv da tugboat dude wuz captain uv. Vanessa zayz day came ta St. Vincint’z cuz da shipyard Jimmy worke' fo'opte' out uv providn' insurance even fo'full-time employeez like him. Day looke' fo'insurance on da open market, buh couldn’t afford it.

Da Affordable Caa Act be suppose' ta help familiez like Vanessa an' Jimmy get insurance. Folkz higha on da income scale should now be able ta afford insurance thankz ta fedz zubzidiez. Da poores' uv da (legal documinte') poa should be covere' by Medicaid. An' fo'dose peeps n' between, da federal fedz offere' ta pay fo'almos' all da coztz uv expandn' Medicaid.

Moe den a millyun Texanz—an' mos' St. Vincint’z patiintz—be somewhea n' between. Day be da workn' poa, o'day be adultz without depindent children, who cannot qualify fo'Medicaid n' Texaz, no matta how poa day be.

Wen Jimmy’z labz showe' a dangerouz high crackah blood cell count, we sent him ta da ER. It wuz pneumonia, an' dere wuz a bigass tuma underneath. Currint guidelinez would recommind screinn' Jimmy fo'dis kind uv canca every year, buh we be neitha da equipmint na da fundz ta offa screinn'. So it gots caute late.

Afta Jimmy wuz diagnose', I helpe' Vanessa fill out da paperwork ta reques' financial assistance fo'canca caa. Da beotch wante' ta know how like UTMB wuz ta offa da beotch baby daddy assistance dude nee'e'.

N' addishun ta on acceptn' 9 percint uv applicantz, da charitee caa approval procezz be a dark art, an' we neva know who will be accepte'. Accordn' ta da UTMB Charitee Caa polisee, da institushun may consida not on a peep’z income an' diagnoziz, buh also such vague qualitiez az “da history uv da problem.” Day also consida whetha da treatmint will offa “educational binefit” ta medical ztudintz an' traineez. Phyzicianz n' trainn' be ta see a certain numba uv each type uv case. If da programz be hittn' quotaz wiff funde' patiintz, patiintz like Jimmy be lezz like ta be accepte'.

Da complexitee an' vaguinezz uv deez policiez meant dat it wuz impossible ta tell Vanessa how like UTMB wuz ta take da beotch baby daddy. We can guezz around a 10 percint chance, buh we neva real know.

Fo'patiintz facn' canca, dis be not a hopeful answa.



Vanessa calle' from a hospital n' Houston n' ear Novemba, distraute, ax'n me ta help da beotch decide whetha o'not ta let da doctorz turn Jimmy’z breathn' machine off. Da beotch wuz afraid da beotch wouldn’t be able ta live wiff herself, no matta wich da beotch chose. I gave da beotch da advice I’d give a homie: dat I truste' da beotch love fo'da beotch baby daddy an' da beotch abilitee ta decide from a place uv love. Jimmy die' late dat nite.

Vanessa’z reques' fo'UTMB fundn' wasn’t approve'. Da beotch haz receive' a $17,000 bill from UTMB fo'da visit wen Jimmy wen thro da ER, an' a $327,000 preliminary bill from da Houston hospital.

If da Affordable Caa Act had do be n' effect las' year, day would be do be able ta afford insurance, get treatmint ear an' avoid bankruptsee. I use ztoriez like theirz—canca ztoriez—wen I am encouragn' my patiintz ta check out da insurance exchangez.

Buh wiff Jimmy gone an' Vanessa unemploye', da beotch now fallz inta da Medicaid coverage gap. I don’t know how da beotch will get caa, if da beotch eva needz moe den St. Vincint’z can give.

My firs' patiint, da one who die' n' hospice, mite be live' if dude canca had do be treate' befoa it had spread from da kidney. Buh without da Medicaid expansyun, da Affordable Caa Act wouldn’t help him: Az 'n adult wiff no depindent children, dude wouldn’t qualify fo'Medicaid now.

N' a betta medical system, dude’d be had a chance at a moe dignifie' experiince uv illnezz. Dude wouldn’t be had ta wait fo'hourz n' a crowde' free clinic, an' assume da postua uv gratefulnezz dat charitee zeemz ta aquia. Dude wouldn’t be had ta be treate' n' part by 'n earnes', buh unskille', firs'-year medical studint. Dude, like so many Texanz, deserve' betta.

Wen one uv our St. Vincint’z patiintz getz a bad diagnoziz, we start sindn' faxez: ta UTMB, ta MD Anderson, ta anywhea dat mite be fundz ta help them. Sometimez it workz out, buh often it doesn’t. Sometimez I think uv it az “sindn' faxez inta da abyzz.” An' zometimez I think uv it az da slow, diligint, technical way dat I be uv insistn' dat deez livez matta.

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

Compassion and Goodness

One of the things I do quite a bit these days is cry.  If I did it prettier and without a runny nose, I'd say that I "weep," but who am I kidding?  I have been known to blow my nose on my tee shirt and wipe my eyes with the back of my hand, flicking the moisture willy-nilly, or letting Dobby clean me up.  He does a great job, even if it does mean that I have to go disinfect myself afterward. He gives a bit of a cheshire smile when I attempt a purr. If someone, even a cat, shows you that much love, you don't interrupt so as to make a critique.

Despite the growing proclivity for leaking saline, which, given my fevers, I can ill afford, emotional stuff builds and builds until bursting seems the only option.

 From Compassion and Goodness

That's when having a best friend sitting close, gently, with savvy, holding my CRPS hands just right -- not stroking, but holding firmly -- would be nice to have.  That I don't is entirely my fault, but doesn't keep me from that morsel of self-pity. I could change this friendship dearth in a mere moment, but I don't, and that's stupid.

Add it to the Stupid List.

Back when I tried to help out some in the fight against people being homeless or so flirting with homelessness that their days were built of bricks dense with stress, back when I spent the day encouraging and fussing, modeling and experimenting with young minds, chalk in hand, back when rushing home to make simple pasta, marinara, music on, back when... I never cried, wept, or had many ocular leaks at all.  The lesson?  Stay busy, do what you love, give back, and be open to the day's unexpected gifts.  Lacking a means of transportation, the men at the shelter welcomed me onto their duct-taped, prayed-over bus that left at 5:30 AM sharp, and got me to the closest metro station for the second stage of my journey to school.  They were sleepy sweet, bitter sharp, funny, depressed, hopeful, a boon one to the other, and to me, the hitchhiker.  It got more complicated as I lost mobility and my scooter joined the dangerous pile of wheelchairs and walkers that we very illegally stashed in the doorwell.  But no tears, not even from the men who surely had reasons to dissolve.

I need to recreate that experience -- without the "elderly, sick, and/or disabled" men without physical or emotional shelter to call their own, without the ensuing two-hour trip to school, without the talented teens on hormone overdrive (and their equally uneven instructors), without the pots of roiling, boiling water and rotini, the rush back to the shelter for evenings of laundry and serious competitions of hearts, spades.  In between hands, grade a paper here, grade a paper there.

Please don't stop, don't allow yourself to be stopped.  If you pause, even, covet the busy-ness with love, and return to it refreshed.

Should you, though, find things rough going, and going rough for too long... Should you not feel rested after resting... Should you lose the joy in passing as yourself through hard things, remembering your swollen feet on the crowded platform, and not the too-cool-for-school fourteen year old goth giggling with a cardiganed lady who, given their shared nose stylings, must be his grandmother... Should that happen, don't stop, still don't stop, even if it means a decade or so of traveling to a hard cadence, of walking from the same points back to the same points.  

If you've read much of this odd blog, you will have found the occasional reference to a man called "my MDVIP Go-To-Guy." He's a doctor who stepped out of most of the madness that has overcome medical practice, deciding instead to have a smaller practice, dedicated to wellness and the spending of adequate time and attention to each patient.  I remember him saying that he wanted to enjoy practicing medicine again, that he was spending excessive time on paperwork and insurance companies and we all know to what he is referring.  I suspect he is a Republican, but I forgive him.

When I had to go without insurance because BCBS priced me out of coverage (They raised my premium four times in a year, to $1513/month, plus a hefty deductible;  They simultaneously began denying me coverage for procedures that needed repeating, like cultures to identify nefarious infective bugaroos.)  Left uninsured with an active bone/prosthesis infection, my MDVIP Go-To-Guy got me through that time by researching the cheapest drugs, by being so vigilant that I never once had to be hospitalized.  He was often praised with the highest praise we have here in Tête de Hergé, being named "a prince, a peach, a pear." 

But when the Affordable Care Act passed, with its life-saving provision of PCIP (The Pre-Existing Condition Insurance Plan), I had to have the infections addressed by a bevy of specialists, the bevy-est of micro-managers who saw me as an eyeball, a shoulder (sometimes left, sometimes right), sticky red blood, and ill-behaved connective tissues, some odd neurological disorder, and a twinge of an attitude.

Essentially leaving the attentive care of the prince, the peach, the pear for Infectious Disease Dood, Shoulder Guy, and a host of White Coats that often didn't even bother to introduce themselves before billing me $300 for scribbling in my chart after sticking their pointed heads inside my hospital room to swap howdies, I felt very much left on my own, and helpless.

What was the plan?

Who was in charge?

Why won't you answer my questions?

Because he accepted email communication, I began a process designed to keep my MDVIP Go-To-Guy up to date on the goings-on, because Lord knows, in this technical age, it's nigh unto impossible to fax, scan, email, or convey telephonically any results, plans, ideas related to my care.  We were dealing with an infection whose bacterial, viral, or fungal basis refused to grow in the laboratory, despite being abundantly evident in surgery.

But then, you know all that old story.

Lately, I have abused the email privilege.  Well, honestly, I don't think I have, but I know that most would say so. 

I don't know what I would have done these last few weeks were he not there at the other end of these garbled messages.  He is limited -- by good sense, and by, I am sure, legalities -- in how he can respond.  But that he does respond, and hasn't yet ordered me put in a special quiet quilted-walled room in some out of the way facility?  Well, it's life-saving.

But I do violence to him with my words -- you've seen me do the same here, you know what I am capable of, and how I excuse myself by calling it "honesty." 

This is the wound I inflicted yesterday:

Hi MDVIP Go-ToGuy,
I have to thank Nathalie at Dr. G's for suggesting that I try to get you to have more control over the specialists that are handling my care.  They're great, talented, and all have tunnel vision.
This morning I had another experience like the one last Tuesday, a rapid and distressing temperature spike, with dripping sweats and a heart rate ranging from the 50s to 120s -- within a half-hour of doing my first antibiotic infusion of the day.  You'll forgive me, but I had already had 2 Endocet for pain (=650 Tylenol), so I dug up my bottle of ibuprofen and took 800 mg, got in bed under a heavy blanket, and just got through it.
The second infusion -- about 2 hours later -- also brought on a reaction, but a smaller spike.  I hit 102, nothing near the 103.5 from last week, but it felt pretty awful.  This time I added ice packs.
THE PICC LINE IS INFECTED, it has to be.  Both of Dr. B's PAs, Susan and Jacqueline, came to that conclusion last week, but he overruled them, saying that even if it is, the cefepime should "cover" me according to whatever grew in the blood cultures.  It only occurred to me today to wonder if my aortic valve is at risk.  Wouldn't that be a hoot.  But there's no "hardware" in my heart, so blahblahblah!
Outside the semi-crises that occur with infusions and flushing the lines, the rest of the time, I am exhausted, in extreme pain, but forcing myself to be an admirable domestic.
The pain in what-was-formerly-my-shoulder is worse.  Now this could be because I am forcing its use, trying to grow some of that scar tissue that supposedly will one day function like muscle.   But who knows?  The hip pain is now in both, with the right remaining much worse.
The spasms are back, as well as blood sugars that defy logic. That's at 50 units of 70/30 twice a day and sliding scale before meals.
I'm going to put my four years of experience with prosthesis/bone infection to the test, go out on a limb and cry, "infection!"   And my specialists are all going to look at each other but no one is going to look me in the eye.  If this is going to kill me out right, or some complication of it, just tell me  It won't be a shock.
So long as I have an ID doctor who doesn't even check my weekly CBC results -- only blood culture results matter -- and a super shoulder specialist who only looks at... shoulders, etcetera -- I don't have a chance.  Yes, I believe there are some of those nasty bugs in my hips, so making the appts to see Dr. S's team is smart.  But I'm exhausted, depressed, and tired of telling this story to doctors who then look at ME as if I'm crazy.
I can tell you now that he'll order a "tap" of the hip under guided fluoroscope, they won't get anything to work with, and he'll say, "well, everything looks fine..."  I've had 10 taps, without results, that turned out to all be in infected areas.
Speaking of crazy -- I think my brain is infected, or that CRPS is having more of an impact up there than I expected.  For the first 15 minutes or so at the start of every episode of spasm, I am suicidal.  That's not an exaggeration, I am not trying to get attention.  It lasts almost exactly 15 minutes and it is a real struggle.  Then, I cry a bit, and it's gone.  Not the spasms, of course, they hang around for hours!  I use the mantra of "it's only 15 minutes," but one day, that 15 minutes is going to coincide with something else, and that will be that.
I've passed out twice this week, both times during a transfer from bleeping wheelchair to the bed -- if you have to have a brief black out, doing it on the bed is a good choice.  I am trying to drink more, because it's got to be dehydration...
Beyond a puerile "please just make it all stop" request, is there some way to draw up a plan, slow things down?  I always feel like I need ID help right when they have checked off their to-do list of 6 weeks of X and 4 weeks of Y -- because I go by symptoms, and the rousing sense of failure that hits when they say "we're done, call us if you need us!"  Same deal with Dr. D -- now that the shoulder is gone, why should he care that the pain is worse and eerily familiar to earlier pains from infection?  And, trust me, there's no one to call during my 15 minute dalliances with suicide -- or if I did call someone, it would be a CYA response.  Who do I tell that I am just crazy enough to think my brain is infected?
So... when you were signing up hale-and-hearty patients for the preventive medicine you were hoping to practice via MDVIP, you must have rolled your eyes to see that I wanted to tag along, eh?
Ah -- the worst fever symptom of all?  Over 101 degrees and I want all physical issues solved, as of yesterday.  I am also rude, weepy, and annoying, even to myself.  I hope to avoid a hit of spasms with these fever attributes -- I wouldn't be able to find a single reason to justify my existence, not in a mere 15 minutes.  My reason for living is Fred -- not love of Fred or even fondness of Fred -- but the need to be able to leave him a little more money than I have right now, and with organized finances, and a house in good repair.  Otherwise, he will be lost.
So what can my MDVIP Go-To-Guy pull out of his hat to help this mess?  No, thank you, I don't care to speak to a counselor or a psychiatrist -- that detracts from my primary objective of accumulating massive amounts of wealth to bequeath the guy snoozing in front of his computer, oblivious to all...

This time, I thought, I might well get a "cease and desist" courier-delivered letter on fine linen stationery, thanking me for having made his practice so much fun and encouraging me to go spread enjoyment elsewhere.  The main thing, you're just not supposed to use the S-word.  I use it and use it often, as part of my effort to use the most appropriate word for sign/signifier/signified/referent.  I got bit with the Saussure bug.

You Readers are pretty sharp.  You might well have already imagined MDVIP Go-To-Guy's response, which I just got, right in the middle of a weep.

Sorry for the late response. To be honest with you, I read this late last night but was so overwhelmed by the email, I wasn’t sure how to respond. 

Your issues are clearly not simple and this is way out of my expertise.
The only thing I can suggest is that I call and speak with Dr. B myself to get a clearer understanding of what his plan is. 

Unfortunately, I am leaving town in the morning for a much needed vacation...
I will try and call him [on my return].

I’m sorry that I cannot give you any better advice than this but I truly have no other ideas of what to do. 

In my 23 years of practice, this is clearly nothing I’ve ever dealt with and I must rely on the specialists for advice and guidance.

The office will be open with Dr. K manning the ship in my absence. J will be here.
If you’d prefer to see me for an appt when I return next week, I’m happy to see you.

Like I said, "a prince, a peach, a pear." 

Just being heard, feeling heard, relieves the pressure that threatened to make a protoplasmic mess all over my clean floors.

So I was able to fire off the last word... 

All right, MDVIP Go-To-Guy, I've hit upon a brilliant plan.
You need a vacation (of that I am sure!).  I need a vacation, too.
So I'll make some version of one... maybe do a virtual world tour, immerse myself in the Olympics, remember how to laugh again.  Renew some of the family relationships that oddly seem to start up again after someone dies (very perverse, that).
Maybe I should try doing a good deed now and then.
So... let the vacations begin, PICC lines, and brain dysfunctions be damned!
You are possibly the best doctor around -- but don't get a swelled head.  That's MY purview.
Thank you.

So once I publish this, you will have, and I will have, proof tangible, bolded and in color, that I am far from alone, far from uncared for, and that fighting that 15-minute fight -- for now -- is worth every bit of the effort.

Cheat Sheets

I'd like to think that actually participating in one of the ACA's already enacted programs -- PCIP -- gifted me with lots of useful info and insight into the health insurance and health care access crisis in this country.  You'll have noticed, Dear Readers, that I mention it often enough.

But my official cheat sheet has often been Shadowfax over at Movin' Meat.  His Blogger "about me" consists of:

I am an ER physician and administrator living in the Pacific Northwest. I live with my wife and four kids. Various other interests include Shorin-ryu karate, general aviation, Irish music, Apple computers, and progressive politics. My kids do their best to ensure that I have little time to pursue these hobbies.

I think it's the "progressive politics" that hooked me, along with a healthy respect for an excellent wonk.

Anyway, take a look at two of his latest posts if you are just now starting to give this whole crisis stuff a thought.  Shadowfax is a good place to start, and then to continue, and then to hone your critical thinking skills -- you may have to jump around the blog a bit but that's no waste of time, either.

Here's one:

OBAMACARE DEFEATS TRUMAN

So this is great news and a great day. My quick reactions: 

First of all, CNN & FOX. Once again proving that being first is a higher priority than being right. How embarrassing. At least their soon-to-be-fired producers will be able to get health care coverage. 

Second, Roberts: I have to give him a little credit. I fully anticipated him to be a partisan hack and invalidate the law. Perhaps the burden of history weighed heavily on him, perhaps the delegitimization of the court influenced him, or perhaps the sheer radicalism of Scalia's dissent drove him to uphold the law. Regardless, he got it right. Make no mistake, though, he did what he could to advance his long-term agenda by slowly restricting the reach of the commerce clause. 

While most of the focus centered on the the Heritage-Foundation-developed mandate (aka the greatest threat to liberty ever), it's important to note that the 4 conservatives wanted to invalidate the entire law, and there is far, far more than the mandate in Obamacare. 12 million Americans will get rebates from their insurers this year based on the ACA's insurance regulations. Rescissions of policies is now prohibited. In a couple of years, pre-existing conditions will be covered under the guaranteed issue provisions, and the moribund individual market will be resuscitated by the insurance exchanges. All of these huge reforms survived and will transform healthcare in a good way. 

The mandate itself may work, or people may prefer to pay the "tax" penalty and go without insurance. We will see. If enough people opt out and insurers are experiencing serious adverse selection in a few years, perhaps the partisan rhetoric will have died down enough that Congress can tweak the incentives at bit. One can hope, anyway.  [READ THE REST HERE]

And here's the other:

 Defending the Mandate and its Tax/Penalty

From a contributor at the Daily Dish: 

This. This is exactly the right approach.

I do not understand why Democrats don't embrace the newly defined "tax", saying: you bet we raised taxes, but not on the hard-working, responsible middle class. This is a tax on those deadbeats who don't pay for their own insurance but still expect care when they show up at emergency rooms. It's a tax, all right, and I think we should agree to raise it even higher so they have more of an incentive to buy their own damned insurance and leave the rest of us alone. Let the Republicans protect the rights of deadbeats; Democrats are fighting for people who play by the rules.  [READ THE REST HERE]

As I said, peruse the dood's writings on health care policy, they're instructive, they're even-handed, I agree with them, and so, they are right.  [Hey, I've had a rough day!]  A big "thanks" to Shadowfax for sharing his inside info and his insightful analysis, too, on this... schtuff.

Without socialism in place, I cannot support "the mandate"

from Socialist Resistance

The joys of dealing with bill collectors!    

Once upon a time in the US of America, medical bills were exempt from strong-arm tactics.  At least, that's the legend of the falls.  No, there is no semantic reason for a perverted reference to Legends of the Fall;  Yes, the only reference I know for the phrase is, indeed, the movie;  No, the movie's theme, if it has one, has no bearing on this post;  Yes, I just wanted to rest my mind and think of Brad Pitt for a moment or two.

My least favorite creditors?  Those who, for whatever reason, keep insisting that I am uninsured, when actually, they have simply failed to file their claims with PCIP, the Crown Jewel of President Obama's Affordable Care Act.  In close contention for favorite are those hospitalist groups that are assigned to patients without consultation or agreement, and who do not accept ANY insurance at all.  That... reeks.  Whereas I will work with the recalcitrant creditor, filing the claims myself, for instance, I am inclined to ignore the two hospitalist groups that almost managed to kill me, and now seek to drive me off of this cliff.

What?  Am I going to weigh in on the Supreme Court arguments currently ongoing?  Am I going to argue that US American citizens be mandated to insure themselves or pay a penalty for failing to do so?

I would, and feel as if I ought, but won't.  I am a Socialist.  President Obama is not even close to being a socialist, else the ACA would have been an audacious, sweeping reform, and it is not.  Had there been a true Public Option, I'd argue until you were blue in the face.

I benefit, obviously, from the Pre-Existing Condition Insurance Plan [PCIP], as I was blatantly pushed out of my individual coverage with BCBS because my care can be absurdly expensive.  After many years of scraping the bottom of my financial barrel, I was finally priced out of coverage.   At last hike, BCBS demanded over $1500 a month in premiums, alone, never mind the steep incline of their deductible, and certainly without consideration that I subsist on a private disability income of 60% of my salary -- with no adjustments for inflation.

Would I be pushing too far, too much, if I mentioned that I am not on the public disability dole precisely because I insured myself -- in this instance, I bought disability insurance coverage, which is ridiculously affordable [while one is working!] and which I oh-so-heartily recommend?

Fred and I are often asked why we are not impervious to accident and illness, given that we live in Tête de Hergé.  And, folks wonder, are not all of our needs taken care of by Archibald Haddock, incorporated?  I hate to redeliver an already recycled response, but you also don't want me to pull a Santorum in the face of a repetitious inquiry, do you?  You may recall this last attempt at disambiguation, from October 2011:

The various formulas and barters that complicate life as a Working Squatter sometimes feel like more of a cognitive confusion than a rich system of interconnectivity.  I get turned around, disoriented.  And scared.  I mean, there's a good number of good people who depend on me and my attempts to preserve and extend the aforementioned 60% of a frozen salary. 


Even though Captain Haddock has provided netting in the event of my total fiscal collapse, we have needs that escape the understanding of Tintinistes -- like insurance coverage, for instance. 


I will explain -- AGAIN -- how it is that Fred and I are not immune to disease like the vast majority of Tête-de-Hergéens.  Simply put, because we entered the country in an unusual way -- via The Captain's miniature submarine, The Schvitz, with its patented Corkscrew Technology -- we were not subjected to the curative BioHasard Filter normally employed on immigrants.  Hence, we've needed to maintain our health insurance, even when doing so ate up 97+% of that famous aforementioned 60% of a frozen 2001 salary!


Since 2001, this private disability insurance has kept us afloat, although the occasional wave of tepid moat water does wash up my quivering nose.  And, with this private disability insurance, I purchase private health insurance, as I, the Resident Socialist, am not eligible for state-sponsored disability coverage.  That's right... I am totally and permanently disabled, but because the majority of my working life was spent in universities, few of which pay into the Social Security systems, I lack sufficient "work credits" to receive anything resembling state-administered disability income.


I know what you are thinking, Friend.  Something like:  "Well, then, they had to have paied into a pension plan on your behalf, so stop whining, Profderien!  Stop this mad shell game, Retired Educator!  'Fess up and show us the money!  I mean, didn't I read that she drives a 2008 Honda CR-V?  Equipped with a motorized wheelchair lift, too!"


Oh, chill.  Of course I tried to recoup the millions stashed in various pension plans under my illustrious name, thinking to create a dandy little Health Savings Account ("tax-advantaged"!)  because that would solve everything! 


{attempts::to::chuckle, failed}


Here's the punchline to that joke:  In order to get one's pension money, one must be vested, and usually one must be vested to the tune of five - seven years.


Guess who was enjoying a life of living-here::living-there, studying with this Famous Person on the West Coast, struggling under these Over-Inflated Egos of the Eastern Seaboard?  The idea that I needed to stick with any one university long enough to be able to access my pension just did not register in my conscious mind.  


"Employers use this strategy to promote loyalty.  Employees do not want to leave free money on the table, so they may not want to leave the employer." {guffaw}


So, yes, there are two large, well-known universities that owe a small measure of their financial health to having bilked me of my benefits. 


You can see that the aforementioned 60% of a frozen 2001 salary assumes more and more importance in our world.

Now that we're all up to date on the intricacies of my financial life, and reminded of my political leanings, I probably should answer the question.  I hedged, hemmed, hawed, and ultimately dodged the question up above.

No, I do not support mandating that USAmericans buy health insurance, nor do I support, in the event that a citizen refuses, the institution of a penalty or tax, call it what you will.

Oh, pick yourself up off the floor, already!

In light of my belief that the conservative SCOTUS will rule mandated coverage unconstitutional, my greatest fear is that the effort to provide affordable and decent coverage opportunities to people with pre-existing conditions will be thwarted, because, in large measure, this provision is only sustainable by the monies generated through universal coverage.

As long as there is no real socialist fabric to support these reforms, we are only playing at reform.

And I will have to deal with these creditors, unsavory as some of them can be, offering them x dollars per month, in perpetuity.

And this socialist will continue to invest in Google, the unofficial insurance policy for Manor expats.