29 attempts to pick up 1 peanut

I have not been posting because even mine own ennui has become boring.  Not worth a groan, an utter waste of a moan.  An insult to adjectives, a baseball bat to the knees of my home-grown adverbs, really culled from your community gardens, picked wet with dew, the gourd mature yet not so large as to be tough, too seedy, but packaged under my name -- printed on squares of cellophane, attached with high tech red rubber bands.  Eggplant, cucumber, climbing the vine beans, I want them tender.

Surgery has been put off a bit, again, this time until June 18, something to do with giving more time to yet another humeral fracture to heal.  I don't know where they're coming from, these breaks.  Fred doesn't beat me about the upper arms. Marmy Fluffy Butt has stopped gnawing in an ill-advised attempt to strike tuna in my marrow, and terror in my heart.

I think a lot about dying.  That's right:  the height of ennui.  Fred even said, "I feel like I am just sitting in this chair waiting to die."

These are the dangers of days so hot and humid that we lose hope and our buttocks carve our cushy futures into the cheap styrofoam of way past cool paisley wing chairs and roll-about PETA-sanctioned pleather office furniture.

Between now and June 18, I need to have my right hip evaluated.  Maybe it'd be more accurate to say "located," because I swear it's gone off again, road-trippin'.  It was on my list of things to do, right after "everything else." However, it seems that during my ICU psychosis, I went on and on and on about how effing much my hip hurt.  To ShoulderGuy OrthoWizard, no less.  At a recent meeting, he intoned (and intoned is the only verb that works here), "I was very angry with you for not telling me about your hip."

Far be it from me to avoid repetitive testing that will clarify nothing, eat the stray orts of my checking account (influence of NYT Cross Word Omnibus) from among the other detritus seeding my dirt-strewn floors, or just shout out about insanity, frustration, pain, and crap like biofilm infection....

Good news?  The clonazepam is greatly helping quell the spaz attacks.  I am down to about one visit from the automatic shimmies a day.  The cost is worth it -- I feel very sedated.  Word is, though, that I'll adjust.  Even if I don't, even if I sort of slant-smile and fail to blink my way through religious services and medical appointments, that's fine with me.  God, or someone, finally took me seriously -- I cannot tolerate the dystonia, the jerks, the nadir of me.  Thank you, God, or someone.

There have been some supremely funny moments here at The Manor.  The telecommunications installer who couldn't stay because he was allergic to cats, forgot the protective cones to.... protect himself, and failed to bring the necessary equipment as detailed in the work order... which he'd love to go over with us but he was starting to itch and did I have any Benadryl?  The third instance in as many years of a person asking me if I knew their friend X, who was also in a wheelchair.  My 29 attempts to pick up a peanut off the floor using one of my new grabbers.  I mean, seriously, who keeps going after, say, the fifth time?

Oh, and the doctor whose name I did not recognize from his $1300 bill.  Something made me check his licensure status.  License?  What license?  Absolute giggles set in when I noticed that my insurance company paid his claim, in its entirety, without batting a corporate eye.

just a few of the available assistive devices.
29 attempts, people, to pick up a freaking peanut.

I'll try to write more, and better, soon.

Nigel Graham singing to find the lost

Published in Sunderland Echo on 17 May 2012 [Twitter: @janethejourno ]

A WASHINGTON [UK] songwriter is continuing his quest to help families of missing children around the world.

Nigel Graham devotes his spare time to composing songs to help promote the search for missing people.

Now he has created a smartphone app which brings together all of his music and videos.

The technology – which can be downloaded to Android phones – is called Find Me Music and includes songs Nigel has written for missing British youngsters Madeleine McCann, Ben Needham, who disappeared from the Greek island of Kos and runaway Andrew Gosden from Doncaster, as well as Canadian Jessie Foster, who was 21 when she disappeared from Las Vegas, missing 10-year-old Lindsey Baum, from Washington in the US and Brenda Gomez, a Mexican girl allegedly snatched seven years ago. [Emphasis mine]

The self-taught musician now receives appeals for help from around the world and has appeared on radio and TV stations internationally.

[...]

His next project involves a missing Italian youngster, Denise Pipitone, who vanished in 2004.

Speaking about his work, he said: “I feel good about helping people and families all over the world.”

Busy Nigel, from High Usworth in Washington, has also created a best-selling iPhones ring tone, which can be used by worried parents to alert children that they need to answer their phone urgently. He has also composed four pieces of music for International Missing Children’s Day on Friday, May 25.

Last year, in an interview with the U.K.Examiner's Jerrie Dean, she asked him how he chose whom to write songs for.  This was his reply:

Nigel Graham:  Over the four years, I have had many requests from YouTubers and campaign groups to write songs for their causes; and I have declined, until this year.  I got into a conversation with David Rose from Fox TV’s, “Most Wanted,” and heard the Lindsey Baum story.  I saw her case was going cold.  Lindsey is from Washington, USA, and I am from Washington, UK.  I decided I was going to help, so I recomposed a song I had written and called it, "One Day Lindsey Baum."  Then a couple of YouTubers made Lindsey a video using the song, and the song was played on Fox TV.  Subsequently, I ended up doing an interview with them.

"greet the dawn with a breath of fire..."

this is pre-op week, and that means weirdness.  

scads of odd little details that are the world to me, yet barely fluff to the world, crowd my mind.

it's hard to know how to prepare for this surgery, so i wait for the lights to be safely out and i cry.  for five or ten minutes, then i stop and stare in the dark for a bit.  there is something wrong with the brain but i care less and less.

the anti-seizure properties or the anti-anxiety components of clonazepam are helping a lot with the spasticity, for which i am profoundly grateful.  if i can manage to get the doctors and nurses at the hospital to understand how it works together with baclofen and yes, even with tizanidine, then maybe there will be no stints in icu or trips to funky nursing homes this time.

pre-op week is always full of fun dialog, too.  this morning, i called one of the myriad assistants to my super surgeon, trying to track down the $2000 she wheedled out of me back in mid-january.  that was to have satisfied my deductible, and yadda.  except that it never was reported to my insurance company.  and, being odd and very touchy about funds, i have yelled, on several occasions, at other "providers" who seemed to be claiming the right to a piece of my delectable deductible pie.  anyway, the conversation boiled down to this:

ME:  i am trying to locate the $2000 i gave you back in january -- you know, find out how it's doing, is it happy, having fun..  i thought for sure it would write but i've not heard a word.
ASST:  we probably used it to pay something.
ME:  probably so!  i'd just like to know what, and when, and all that stuff, as i cannot locate the EOBs that usually go hand-in-hand with all that glee...
ASST:  o! you know what?
ME:  no!  what?
ASST:  we only needed $170 of that money and then they said you was covered at 100%
ME:  super cool!  so where is the $1830 that was left over?
ASST:  well, now, we just found that out in february.
ME:  and it's now mid-may... your point?
ASST:  can i get back to you on that?
ME:  you may, indeed  and i really, really want you to feel free to leave a voice message.


pre-op week is just fun, and foolish, for whatever reason.  it's hard to whip up the frenzy necessary for good reportage, so i'm gonna ask that you reread Dr. Hackenbush! Calling Dr. Hackenbush!  in that post i recorded one of  my favorite conversations from the medical intake process that makes it such a favorite activity for nurses and patients alike:

Here is a sample of our stellar communication, verbatim:

The Nurse: When did you last have an EKG?

Me: In August, the last time I was here. 

The Nurse: And when was that? 

Me: In August. 

The Nurse: And where can we get a record of that? 

Me: Ummm, here? In my medical records? (See? She managed to get to me -- my "intonation ascendante" is a dead give-away. Ar! I used to get hit on the head with a ruler whenever my "intonation ascendante" gave way. What was that dear old teacher's name? I can't remember, but I loved him...) 

[Choo choo! Train of thought! Choo... Back to the scene of the crime... ] 

Me: Ummm, here? In my medical records?

The Nurse: Hmmm. Maybe in your medical records.

so, yes, i am here begging indulgences.  your indulgence.  i find it hard to remember the day of the week, i am unsure whether the 12-hour clock is a good idea, and i am sort of shaking in my non-existent boots.

i will lose my left shoulder and the upper part of my left arm next week,

i still look to the amazing young hannah for inspiration and to stir the cauldron of my shame.  she is doing great with her physical therapy, and just prior to starting a new round of chemotherapy last week, she began the process of getting her fancy-schmancy new prosthetic leg. i love looking at this picture: she makes me smile, she makes me have hope for the future, her own, and everyone in her general proximity.

what super surgeon's plan will be should he open me up and find more infection (as unlikely as *that* would be, SNORT!).  he confessed to not having a clue but opined strongly against tossing in a third prosthesis... although the situation might cry out for yet another antibiotic-laced spacer.  and another surgery.

i am downright stupid.  for some reason, i thought making this brave decision to opt for the flail arm meant that the infection and inflammation would stop.  duh. no, i get to be brave and fight a good fight within the confines and confections of the identical situation.  the up-side is that should we ever get a handle on those wile e. pathogens, there's an improved chance of annihilating the suckers using some box of combustible supplies forwarded by acme corporation.

me and my deals with god.  harrumph.

today?  today i took a pre-dawn shower, and cooked up what can only be called "a mess" of brown rice.  it is destined to be a homey, comforting rice pudding for fred and the militant existentialist lesbian feminists pot luck wednesday night supper.  for some reason, they think it becomes health food if made with brown rice. whatever.  militant existentialist lesbian feminists -- and fred -- become all cute and stuff when their pupils dilate at the sights and sounds of comfort food.

the felines are fine.  okay, well, buddy has been a bit traumatized.  first fred dropped a heavy ceramic bowl full of kibble on his fine head.  and then i did it the next day.  so the poor little guy, who is always hungry, looks skyward with both fear and hope.  we tried to explain and apologize but we don't speak cat.

i need some pain meds and for my legs to be elevated, and to weep a little.  (oy!)  so i will write at you later, dear reader.

They're back...

The lovely literates over at American Idyll are back from their pilgrimage, and with beautiful  evidence.  I will steal two photos from ruuscal and two photos from TW to whet your whistle.  Wet your whistle? Rev up the appetite?

Hold the breath.
Laugh.
Imagine.

CONFUCIUS AND MENCIUS TEMPLES FROM WHITES BUTTE

-local flora

whipple cholla

elvis, doing his thing

The Canyon and the River are not theirs to own, of course, and both might argue that the images begged taking -- still, credit them their eye, their availability, their joy, their fun, Elvis, and Poncho.

Give the boys their due, is all I'm saying.

Smooches galore, you two (three, four?).  Cheerios and fruitloops!

Love from the Marlinspike Hall Gang

To Wet (Whet) your Whistle : Origin and Meaning

What does it mean if you wet your whistle?
The most common interpretation is to have something to drink, usually something alcoholic. More polite to say you are off to wet your whistle than to say you are going drinking.
Most references relate to a custom quite a few hundred years ago when drinking mugs had whistles that one would blow to indicate you needed a refill.
Some say the whistle was attached to the handle and became wet after the drink had been poured, hence to wet your whistle.
Other sources say the whistle was part of the mug, built into either the rim or handle. The result in both cases being a wet whistle. I went digging on the web and could find no example of Ye Olde Whistle Mug. Maybe I did not dig deep enough. The only examples I could find were replicas of whistle mugs on offer as curios.
By the way, the whistle part. It would appear in times past ones mouth and or throat were referred to in common talk as your whistle, which makes sense to me. To wet your whistle was to have something to drink. There is documentation that this was in use during the 1300’s. ( Maybe one wet ones whistle before you whistled, hard to whistle with dry lips. Maybe one wet your whistle before talking, something like a glass of water on a speakers table)
So, the way I look at it, is that to have something to drink preceded the whistle on the mug concept. Maybe the one morphed into the other.
You will also find references to “Whet your whistle”. My immediate reaction was that whet morphed into wet over the passage of time. This is not necessarily true.
Whet per definition means either to sharpen something on a grindstone (whetstone) or to excite or stimulate a desire, interest or appetite. Starters at a meal are there to whet your appetite in stimulating the desire to eat more of something else. This is also a saying in its own right, first documentation however quite a few years after the Wet your whistle.
I did a very unsophisticated test on the Internet and Googled “wet your whistle” and had 426,000 hits, the majority directed towards drinking. “Whet your whistle” resulted in 421,000 hits, the majority of the answers related to stimulating further thought or experience processes.
Now you have a good basis to go scratching around for more information and draw your own conclusion.

Alacrity of Crab and No Fear of Death

Set your sound system to mute.  I was thinking more of what Holly Near once looked like, on the steps of Sproul Plaza, than of the song, which I now realize that I hate.  It's a facile, good-for-nothing song.  And I'm just lazy enough not to want to spend five minutes reformatting this award-winning little vid so as to get rid of it.  

Plus, I have Cajun Blend Trail Mix seasoning stuck all over my fingertips, making them sticky, orange, and tangy.  I don't want to touch too much stuff, leaving cajun traces every which where.

Why don't I just wash my hands, spend the few minutes fixing the sound, and apologize to Holy Holly Near?  Well, who died and left you in charge?

There has been something potentially wonderful going on.  It's called clonazepam, and depending upon whom you ask, it is used to treat dystonia, anxiety, seizures, panic attacks, and insatiable lusting after good garlicky pickle juice.  I began noticing it being mentioned in articles about CRPS spasms/dystonia, mostly articles originating in the U.K.  Being at that "well, why the hell not?" stage of life, I emailed my good and faithful MDVIP physician, asking whether he thought it worth a try.  In lieu of a discussion, he called in a prescription to the Lone Alp Apothecary.

The first change of note was blubbery.  Babalushka bablubbery.  Sleeping as if it were le dernier cri and all the babalushka bablubbery surrounding it were refined messes worthy of literary awards.  I decided this was how I wished to die -- asleep, or contemplating sleep.  I kept all my other meds the same -- maxed out on Baclofen, even adding the odd tizanidine to the usual pain meds of methadone and endocet.  "Did I want to die?" you unsufferables are muttering, shaking your locks to-and-fro.

Why, yes, you unsufferables (and mutterers, too) -- I did hope to traipse off to death land.  I couldn't take it anymore.  The time awake was spent in rocking, tendon-splitting spasm, uncontrollable sobs that bored even the Feline Remnant.  The time asleep ordered itself around oneiric alphabetizing of what I could expect upon waking.  And upon waking?  Well, I was made to know that I was... "overwhelming." 

I put a lot of hope in an appointment chez Dr. PainManagementDood.  I know, I am stupid.  My previous appointment, to my recollection, had ended with the promise that the next one would entail a shift away from methadone, which, frankly, frightens me, and toward a better management of my baseline pain.  But -- AGAIN -- I was met with a Nurse Practitioner's big round eyeballs, and a "Uh, did we say we were going to do that?  Did you tell us your pain was out of control?  Can we take that up next month?"  I went home and vomited

So slipping away into babalushka bablubbery was a smiling, gently smiling thing, though lonely, and scary.

Then my spasms decreased in frequency.  Not in severity, ugliness, painfulness, no -- just stopped happening as much, as often.  I pushed the dosage of the clonazepam to the most recommended by good MDVIP go-to-guy, and cut back some on the baclofen.  

I started to be able to predict the babalushka bablubbery, so that a warm quilt could be at the ready, other important maintenance drugs could be taken on schedule, the room could be darkened, there was a semblance of... intent.  Occasionally, I risked thinking beyond the impending babalushka bablubbery, and plan to cook dinner for Fred, myself, and Bianca, because if I had to listen to that god-forsaken *ding* of the microwave one more time, I was going to revive Mengele's most promising experiments.  The secret lore of the Haddock clan includes the updated names and addresses of Auschwitz twins.  Sometimes, Reader, looking the good captain Archibald in the eye is a soul-sucking trauma.

It's been about a week now, I think.  I am not sure, at all.  I am not sure what day it is, not sure whether I believe the sources that yearn to ease my mind about it.  Is it 2:07 PM 5/18/2012 or is that just what you all want me to believe?  Hmm?  My pain level is very, very, very high -- I'd rank it around a nine, and it's distracting, it's evil.  I know I took my breakthrough pain medication and so cannot have more until roughly 7 PM.

The spasms are lasting only about 3-4 hours per day.  That is PER DAY.  TOTAL.  I am afraid to type it, afraid to publish it, afraid to believe it.

So God bless MDVIP Go-To-Guy, God bless him as he has never blessed a soul before.  You see, he believed me, he believed my desperation, he found merit, apparently, in my suggestion, and above all, Sweet Reader, he tried.  

He even heard me when I said I'd had it with Dr. PainManagementDood, and suggested another doctor, by name.  Unfortunately, that doctor has gone the route of ka-ching::ka-ching procedure land, and so only treats CRPS with sympathetic and regional blocks.  Oh, and SCS -- which would fly in the face of my recent decision to rip from my body all extraneous implants.  

Here is the kicker, though:  when he found that his referral was actually no referral at all, MDVIP Go-To-Guy offered to take over my pain management himself.  I probably should have said "Yes, and yay!" but a smarter self intervened to thank him but decline.  It's beyond unfair, to dump everything on him.  The current climate of looking over prescriber's shoulders and second-guessing their pain management decisions is not what I want to wish on him -- though there is little doubt my treatment would raise more than an odd and poorly tweezed eyebrow.

But here is a "Yay" for the man, anyway, because the combination of tizanidine, baclofen, endocet, methadone, and CLONAZEPAM seem to have quelled the spasticity enough that I must reconsider life.

Um, it also seems to have triggered something that I will call "automatic eating," which results in finding half empty yogurt containers in bed, and bowls of popcorn with kernels all hither, all yon.

There are increasing deficits, too, and these are the reasons for cutting back on dosages in the hope of finding a happy medium.  Legs not working too well, hands not grabbing with the alacrity of crabs. An absolute absence of the fear of death.

Someone asked for a visual update of hands and feet, so I pieced together the video below.  Again, I had fun with favorite things in juxtaposition.  

Which brings me back to Holly Near and her glorious red hair back in the mid-eighties, being all troubleshooting troubadour-ish on Sproul Plaza.  But really, what a shit of a song.

You know it and I know it -- were we really singing for our lives, it wouldn't be such a whine.  It'd be glorious.  It'd be red hair glinting in a setting sun.

It's Time

Having known gay men and lesbian women who weep with regularity in North Carolina, Colbert took my breath away.

What a lovely mess truth can make of us.  I never thought I'd utter "I love Joe Biden" with either alacrity or warmth, certainly never with such frequency.  If he outed President Obama, if he stumbled into the thick of it, if he had it all planned from the get-go, I say "hooray."  If it was a blunder, well, blunder on!

He spoke his mind. Luckily for him, that has unquestionably resonated as truth.  "Joe Bombs," as such speech is derisively called by teeny-tiny, elegantly buffed wonks, are not "helpful."

I beg to differ.  Lose a little elegance, gain a little truth.




Created by GetUp! Action for Australia
Produced by Peter Slee & Michael Pontin at Motion Picture Company 
Lead: Julian Shaw
Creative Director: GetUp's own Simon Duncan Watt
Director: Stephen McCallum

Hiller Armament Company of Virginia

This is one of those things that we find in our in-boxes daily -- outrageous, hard to believe, normal, and believable.  All I can do is sign the requisite petition, advertise the details, then accidentally break a small bowl in the sink before settling by the window to watch the bluebirds ready their nesting boxes.

From Change.org:

In the past couple of days, news sources have reported that the Hiller Armament Company of Virginia has been selling gun targets that look like Trayvon Martin, complete with a hoodie, Skittles, and iced tea.

It's not just vile, it's possibly illegal: Virginia law says that no one can profit off of the likeness of any person without his consent -- even if that person has been killed. But as soon as reporters started asking questions, the Hiller Armament Company shut down its website and disconnected its phone.

Tahir Duckett lives in Virginia, and he wants Virginia's Attorney General, Ken Cuccinelli, to investigate the Hiller Armament Company and punish them if they have broken the law.

Click here to sign Tahir's petition demanding that Attorney General Cuccinelli investigate the Hiller Armament Company for selling gun targets made to look like Trayvon Martin.

Thanks,
Patrick Schmitt

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

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

from Reuters

Shooting targets resembling Trayvon Martin sold online

By Barbara Liston

ORLANDO, Florida | Fri May 11, 2012 6:16pm EDT

(Reuters) - Shooting targets resembling Trayvon Martin, the unarmed black teenager shot to death in Florida by a neighborhood watch volunteer, were offered for sale online before the ads were pulled by the auction site.

The sale at an online gun broker's auction site started on April 22 and offered 40 10-packs of paper targets, according to a screen shot of the auction ad by WKMG-TV in Orlando before the ad was taken down.

The targets featured a silhouette of a faceless person wearing a hooded sweatshirt, known as a hoodie, and holding a bag of Skittles candy and a container of tea. In an email exchange with WKMG, the seller claimed to be motivated by profit and to have sold out in two days.

Martin was wearing a hoodie and returning from a convenience store with Skittles and tea when he was shot on February 26 in Sanford, Florida. Neighborhood watch volunteer George Zimmerman, 28, is awaiting trial for second-degree murder in the racially charged case.

"Obviously, we support Zimmerman and believe he is innocent and that he shot a thug," the seller wrote on the site, according to WKMG-TV.

Jay Zwitter, a sales representative for the auction site, Gunbroker.com, told Reuters the target ad was removed as soon as it came to the company's attention, but he declined to say how long the ad was on the site.

He said the company, which hosts 600,000 ads daily, has the right to remove ads, but wouldn't discuss the reason behind the removal.

"This is the highest level of disgust and the lowest level of civility," attorney Mark O'Mara, who represents Zimmerman, said of the ads, according to WKMG.

A representative for Martin's family could not immediately be reached for comment.

Authorities initially declined to arrest Zimmerman for the death of 17-year-old Martin, citing Florida's "Stand Your Ground" law, which allows people to use deadly force when they believe they are in danger of getting killed or suffering great bodily harm.

That decision prompted nationwide protests and accusations of racial bias. Zimmerman, who is white and Hispanic, was later charged by a special prosecutor appointed by the state's governor.

Hilary Shelton, director of the National Association for the Advancement of Colored People's Washington bureau, criticized the targets.

"It's outrageous that someone would try and exploit such a horrific situation as an unarmed teen being gunned down, and profit off something so vile and disgusting as a gun target silhouette," Shelton said.

The seller, identified on the auction site as "Hillerarmco," could not be reached for comment. The Hillerarmco.com website, registered on April 20, was no longer available, and the seller's address was not functioning. An email from Reuters to the auction site went unanswered.

According to Tucows Domains database of website owners, the Hillerarmco.com website belonged to Hiller Armament Company in Virginia Beach, Virginia. The registrant and administrative contact names were listed as anonymous.

(Additional reporting by Chris Francescani; Editing by Jane Sutton, Cynthia Johnston and Eric Beech)

Wednesday's KittenCam - Reposted One Year Later

hi ya, dear readers.  i'm in a rough patch, necessitating recourse to anniversary republications. here, for example, is buddy, the freakishly large kitten, taking on his nemesis, the blanket.  he continues to put the blanket in its place at least once a week.  as soon as my life expands beyond spasms and the lord's various names taken  in vain, i'll write something that flirts with new.  thanks for your patient understanding.


Direct from our reality of just 5 minutes ago:  Buddy the Kitten.

He is very, very tired but is obstinately refusing to rest.  You know the pattern -- he is racing around like a small, fuzzy lunatic at present, but in a moment will simply drop unconscious for a good hour or two.

Here he is, having decided that dragging around a heavy blanket was something worthy of beaucoup effort.  He is a focused little cuss.

American Pain Foundation: Gone

"With deep regret and heavy hearts, we sadly inform you that due to irreparable economic circumstances, APF must cease to exist, effective immediately. On May 3, 2012, the Board of Directors formally voted to dissolve the organization.

The Board and staff have worked tirelessly over many months to address a significant gap between available financial resources and funds needed to remain operational. Unfortunately, the economic situation has not changed in any meaningful way, despite our best efforts.

APF hopes to be able to transfer content from various information, education, and support programs to other organizations so that you may continue to benefit from the value these programs have provided to thousands of individuals and families across the country.

Your personal experiences in living with pain and seeking compassion, empathy and medical care often against the odds -- have driven our efforts over these many years. This includes enactment of key provisions of the National Pain Care Policy Act in the Health Reform Bill that led to a landmark report issued in 2011 by the Institutes of Medicine. This report documents the shocking numbers of US citizens that live with pain and calls for immediate changes to address gaps in care. Despite this, the current climate towards improving the plight of people with pain in the US continues to be precarious and hostile.

As you unfortunately know, the need for public outcry around the needs of Americans struggling with pain conditions is greater today than ever before in light of the multi-front assault occurring daily on our right to dignified care. Misguided state and federal policies are impeding access to appropriate and reasonable medical care for people struggling with pain, and deterring even the most compassionate medical providers from treating anyone with pain conditions.

It is therefore critical that each of you raise your voices singularly and together to demand the care you deserve. It is only by continuing to demand attention to the ever-worsening barriers and unacceptable suffering that change will occur.

Elected officials, policy makers, and the media need to keep hearing from each and every one of you so they are not allowed to walk away from the consequences of this over-looked public health and medical problem.

Please know that although APF will cease to exist, the resolve and commitment among individuals on the Board and staff remain strong."

One spin, likely to be the most common, comes from ProPublica:

As the U.S. Senate Finance Committee launched an investigation Tuesday into makers of narcotic painkillers and groups that champion them, a leading pain advocacy organization said it was dissolving "due to irreparable economic circumstances."

Documents

Senate Committee Investigates Marketing of Painkillers

by Charles Ornstein andTracy Weber, ProPublica, May 8

Earlier Coverage

The Champion of Painkillers

by Charles Ornstein andTracy Weber, ProPublica, Dec. 23, 2011

Two Leaders in Pain Treatment Have Long Ties to Drug Industry

by Tracy Weber andCharles Ornstein, ProPublica, Dec. 23, 2011

Impact

What the New ‘Collaborative Media’ Can Mean

Tracking the Money

• Our Dollars for Docs Database
  We compiled tens of thousands of records from all the companies that have disclosed their payments to doctors so far. Search for your physician.

The American Pain Foundation, which described itself as the nation’s largest organization for pain patients, was the focus of aDecember investigation by ProPublica in The Washington Post that detailed its close ties to drugmakers.

The group received 90 percent of its $5 million in funding in 2010 from the drug and medical-device industry, ProPublica found, and its guides for patients, journalists and policymakers had played down the risks associated with opioid painkillers while exaggerating the benefits.

It is unclear whether the group's announcement Tuesday evening — that it would "cease to exist, effective immediately" — was related to letters sent earlier in the day from Sens. Max Baucus, D-Mont., the finance panel chairman, and Charles Grassley, R-Iowa, to the foundation, drug companies and others.

In the letters, the senators cited an "an epidemic of accidental deaths and addiction resulting from the increased sale and use of powerful narcotic painkillers," including popular brand names like Oxycontin, Vicodin and Opana.

Growing evidence, they wrote, suggests that drug companies "may be responsible, at least in part, for this epidemic by promoting misleading information about the drugs' safety and effectiveness."

The American Pain Foundation's website carried a statement Tuesday night saying its board had voted May 3 to dissolve the organization because it couldn't stay "operational." The foundation did not respond to requests for comment Tuesday.

The senators are targeting a who's who of the pain industry, seeking extensive records and correspondence documenting the links, financial and otherwise, between them and the makers of the top-prescribed narcotic painkillers.

Letters went to three pharmaceutical companies, Purdue Pharma, Endo Pharmaceuticals and Johnson & Johnson, as well as five groups that support pain patients, physicians or research: the American Pain Foundation, American Academy of Pain Medicine, American Pain Society, Wisconsin Pain & Policy Studies Group, and the Center for Practical Bioethics.

The Federation of State Medical Boards, the trade group for agencies that license doctors, received a letter, as did The Joint Commission, an independent nonprofit that accredits hospitals nationwide and made pain management a national priority in 2001.

A report by the U.S. Government Accountability Office in 2003 noted that the commission partnered with Purdue Pharma, the maker of Oxycontin, to distribute pain educational materials nationwide. The committee's letter to Purdue noted that thecompany pleaded guilty in 2007 to federal criminal charges that it misled regulators, physicians and consumers about Oxycontin's risk of addiction.

The senators requested payment information since 1997 to 10 groups and eight people, including two doctors featured in ProPublica's December report. They asked about any influence the companies had on a 2004 pain guide for physicians that was distributed by the Federation of State Medical Boards; on the American Pain Society's guidelines; and on the American Pain Foundation's Military/Veterans Pain Initiative.

In addition to citing ProPublica's work, the letters also mention the reporting of the Milwaukee Journal Sentinel and MedPage Today.

Patients in serious pain need access to opioids, the senators wrote, but drugmakers and health-care groups "must distribute accurate information about these drugs in order to prevent improper use and diversion to drug abusers."

"The problem of opioid abuse is bad and getting worse," Sen. Grassley said in a statement. "Something has to change."

"When it comes to these highly addictive painkillers, improper relationships between pharmaceutical companies and the organizations that promote their drugs can put lives at risk," Baucus said in a prepared statement.

Dr. Andrew Kolodny, chairman of psychiatry at Maimonides Medical Center in Brooklyn, N.Y., and president of Physicians for Responsible Opioid Prescribing, applauded the investigation.

"These groups, these pain organizations … helped usher in an epidemic that's killed 100,000 people by promoting aggressive use of opioids," Kolodny said. "What makes this especially disturbing is that despite overwhelming evidence that their effort created a public health crisis, they're continuing to minimize the risk of addiction."

Concerns about the overuse and abuse of painkillers have intensified in recent years. As sales of the powerful drugs have boomed — rising 300 percent since 1999 — so, too, have overdose deaths. Opioids were involved in 14,800 overdose deaths in 2008, more than cocaine and heroin combined, according to the U.S. Centers for Disease Control and Prevention.

In 2009, the use and misuse of the drugs were cited in more than 475,000 emergency department visits, nearly doubling the 2004 number, the CDC said.

Pain doctors and patient groups say that while drug overdoses are a legitimate concern, only a small percentage of deaths involves patients who receive them from their doctors. Most deaths involve illicitly obtained drugs, statistics show.

The groups also say that patients' risk is low if they do not have addictive personalities, and that any restrictions should not punish patients who suffer from serious pain.

In recent weeks, two articles in medical journals have documented different aspects of abuse.

According to a paper published online this week by the Archives of Pediatrics & Adolescent Medicine, one of every eight high school seniors surveyed said they had used prescription opioids for nonmedical reasons.

A paper released last month by The Journal of the American Medical Association found that the rate of newborns diagnosed with drug withdrawal jumped threefold from 2000 to 2009. And the rate of mothers using opioids at the time of delivery was five times higher in 2009. (Not all babies born to mothers using the drugs exhibit signs of withdrawal.)

Janssen Pharmaceuticals, a Johnson & Johnson subsidiary that makes the painkiller Nucynta, said in a statement that it "is committed to the responsible prescribing and appropriate use of opioid pain medications" and has supported educational websites about safe use.

The company is reviewing the senators' letter and "will work with them to fulfill their request for information," spokesman Mark Wolfe said via email.

Purdue Pharma acknowledged in a statement that it had received the letter, was reviewing it and looked forward to "cooperating with the committee on this matter."

Endo did not return a request for comment. A spokeswoman for The Joint Commission said the group had just received the senators' letter and had no comment yet. The Federation of State Medical Boards responded but did not offer immediate comment.