Jackie and Mel: Think of the Things You Can't Remember

On 24 January 2013, over at Phil McGraw's half-dead blog, Turning Point, a viewer wrote in wondering where she might find a place to discuss chronic pain issues on his website.  The Chronic Pain Message Board used to be my morning cyber café spot, where I'd have my first few shots of the day with good friends sharing similar circumstances.  Granted, when there were no fires to put out, we mostly chatted and gossiped and braced ourselves for the coming day with bad jokes, more chat, and wisecracks at the expense of spouses, caretakers, children, pets, and, occasionally, Phil Himself.

No one answered her, so I did, on the 31st.  There is no more Chronic Pain Message Board community.  Whether that's good or bad, I can't say.  I maintain four friendships, of diverse type and degree, from that wild coffee klatch bunch, and keep track of two others.  There's one woman from the old board, though, for whom we maintain several food-rigged traps, on either side of the approach to the drawbridge, even one on the inside ring of the moat.  The carnies and Cirque du Soleil addicts in recovery, who lodge in the barn during most of their detox and rehab, keep an eye out for her.  Which just proves that every online support group has its share of potentially dangerous weirdos.  Recent rumors have Lashawnna as deceased, but I'll believe it when I pry her wireless mouse out of those cold, dead, con artist hands.

Um, yeah.  So this very nice woman imploring Dr. Phil to explain the realities and needs of people with Chronic Pain ended up just getting me, an anti-McGraw fanatic, recommending that she give the insanely cheerful Depression Group a go, since depression and pain go hand and hand, go round and round.  I'm sure that wasn't terribly helpful.  Everyone really just wants to hear the sexy deep tones of that near tennis pro, Phillip Calvin McGraw.  Here's a recent photo of the man warning everyone to keep their eyes on the ball in the back of the turnip truck while they flip those four-dimensional Texas corncakes -- after he evidently got distracted up at the net:

Courtesy of the DrPhil Twitter Feed

And I renew my oft-noted characterization of Bubba McGraw as a metrosexual.  Look at those finely plucked brows.  Maybe the Chronic Paineur looking for help also saw it, and got a chuckle, released a few endorphins, and felt a bit better.

Writing that brief response on his blog made me nostalgic for those good old days, when I had coffee with Ms. Diana-With-An-H and checked in with Ms. Carol.  So I went digging for some archival memories.  But the very first page I turned up had me remembering things a bit differently.

It is people who either have no resources or who don't know how to use them... It is people who have no medical options and begin to lose touch with reality, hoping for a chubby Texan celebrity talk show host (known to believe that most everything somatic is caused by heavy metal toxicity) to come loping along on a worn out swaybacked white stallion to save them -- for free... It is people like myself who are desperate for any kind of relief, no matter how ridiculous... that make up the demographic of vapid online support groups.

But buried in there, as frequently as on every other page of archival material, were plaintive calls for help from folks usually never heard from again.

What happened to Jackie, whose Mother typed her entry for her, as she could not?
And Mel, who wrote her very first post as an answer to Jackie, where is she now?

As someone I once knew often urged me:  "Think of the things you can't remember."

Without too much further ado [!], here are Jackie and Mel's post from McGraw's former Chronic Pain Message Board, both posted on 5 September 2005.  Jackie, like so many people who manage only to post once -- that once taking a lot out of them -- thought she was writing directly to "Dr. Phil."

I've tried to eliminate/change any identifying details, like last names, ages, regions -- but nothing can erase the pathos, and the knowledge that there are thousands upon thousands of other Jackies and Mels, who feel as if they've nowhere to go, and that no one is listening.

NOTE:  Jackie refers to Dr. H and his clinic (obviously not in Nicaragua, but that's all I could come up with!), plus his infernal website, and I'm sorry to say that Dr. H turned out to be a hoax, even doing prison time for Medicaid/Medicare fraud.  But this is how precious hope is kept alive -- and cruelly toyed with -- for many people with difficult diseases.

JACKIE
September 5, 2005 4:27 pm EDT

Complex Regional Pain Syndrome (CRPS)
Hi. My name is Jackie V. At the time, I was 18 years old and had just bought my first car. I had a boyfriend who loved me and lots of great friends. I had a great job that I was really good at and paid well, and I had pride, dignity, confidence and humility. I guess you could say that I was just a normal girl, but there was nothing normal about how my life was about to drastically change forever!  
I had been waitressing and hostessing at a nice restaurant for months where on May 4, 2002, I had a minor injury. The doctor said I had hundreds of tiny shards of glass in the palm of my right hand (the hand that I write with). He said not to worry, that everything would be fine. But it wasn’t! Suddenly 1 week later, I had excruciating pain and extreme swelling and discoloration throughout my hand and wrist all the way up to my right elbow. I could barely even move my wrist or fingers without crying out in pain!  
When Workers Compensation Board got involved, right from the start they didn’t believe that all the pain and swelling was from the accident at work. So, I was passed from doctor to doctor to doctor, as each one would give up on me – not knowing what else to do. Most of them resorted to pumping me full of drugs and at one point, I was taking some medications because of the side effects of other medications. Honestly, I have probably taken more medications than about 20 people would take in their entire lifetime (and it’s only been about 29 months so far)!  
So finally, the diagnosis – for awhile it was Carpel Tunnel Syndrome, then it was Severe Tendonitis, then Reflex Sympathetic Dystrophy (RSD), then Fibromyalgia, hours later it was RSD with secondary Fibromyalgia, THEN it was all in my head and the latest diagnosis is Complex Regional Pain Syndrome (CRPS), which is the exact same thing as RSD. You know, my doctors spent so many months trying to figure out what was wrong with me, what it was called. And it got to a point where I really didn’t give a flying crap (sorry) what my disease is called, all I want is for someone to make it go away!!!  
(I wanted to give you a bit of info on CRPS so that you had some sort of idea of what I’m dealing with.)  
Complex Regional Pain Syndrome is a progressive disease of the Sympathetic Nervous System, an abnormal sympathetic reflex. It can follow a minor trauma (like a fall or sprain), a break or fracture, a sharp force injury (like a knife or bullet wound), heart problems, infections, surgery, spinal injuries or disorders or other major traumas. CRPS is a devastating, disabling disease that has completely robbed me of my ability to function because of extreme, severe pain that is constant and never-ending. There has not been even one tiny moment in the last 29 months when I have not been in terribly horrible pain! If it is caught, and most importantly correctly treated early, then most CRPS patients respond well to treatment. But in my case (and like so many others) it wasn’t, so I was left to try and cope with horrendous pain, impaired motor functions, body tremors, dystonia, full body muscle spasms, sympathetic nervous system dysfunction, extreme swelling, skin color changes, skin rashes, fevers, increased inner body temperature, sores, sensory changes, hypersensitivity, short-term memory problems, emotional distress, frequent migraines, daily headaches, insomnia and bone loss. So sadly, (believe it or not), ALL of these symptoms have become a part of my daily life! CRPS also causes depression, NOT the other way around like most doctors like to think!!!  
Ultimately, severe and disabling pain is the hallmark of this frustrating disease. Although countless doctors in Canada disagree, another hallmark of this disease is its ability to spread from one affected area, to another area, or in some cases, like mine, from one affected area through the entire body. As a result, few patients, like me, have total body CRPS and are severely incapacitated, in fact, the Mayo clinic has found that only 4% of patients get total body CRPS. I can’t walk, I can’t wheel myself in my wheelchair (because my right hand doesn’t work – I can’t move my fingers or wrist), so if no one is home and I have to go to the bathroom, then I have to crawl. I have to crawl on my stomach from the TV room to the bathroom and back. So, when it comes to be this late in the course of this disease, treatments are rarely effective and people like me are forced to cope with intense chronic pain!  
One thing that really bothers me is the fact that there is a huge lack of knowledge about CRPS, even among medical specialists. In fact, CRPS isn’t even taught in Canadian medical schools, so some doctors really believe that CRPS does not even exist! I believe it is only through the right education that we can stop improper diagnosis and treatments. I desperately need to make the public aware of this unbearably painful and crippling disease because it affects millions and millions of people throughout the entire world! It’s actually most common in people 40 to 60 years old, but recently doctors have found that it is now affecting people who are younger and younger (even as young as 3 years old).  
I guess the most devastating aspect of this illness is how it affects every single part of my life. At the very beginning of this letter, I mentioned some important things that I had before my accident, and now because of this stupid disease, ALL those things are gone and the scary thing is, is that I may never get those things back again! The really frustrating part is that physicians, other health care professionals, Workers Compensation Board workers, employers and especially friends, lovers and family members simply don’t understand just how much I am really suffering. They just don’t understand, they don’t get that I am in pain ALL day, EVERY SINGLE day.  
Not only is my disease extremely difficult to live and try to cope with every day, but I also have to deal with the many side effects of all of the medications I need to take (like weight gain – I was 115 pounds before my injury, and now I’m 257 pounds, also there’s dizziness, extreme nausea, major constipation, blurred vision, loss of appetite, hallucinations, completely passing out, even more insomnia and dopiness). As a result of all this crap (sorry again), I live, pretty much, without hope, in depression, anxiety, anger and fear! Pain, depression, being reduced to living in a wheelchair, not being able to dress or bathe myself and basically not being able to do anything a normal 22 year old should be able to do for herself results in even more anger, fear and anxiety. Complex Regional Pain Syndrome may not be physically fatal (like cancer or MS) and to you this might sound weird, but CRPS is definitely emotionally, mentally and spiritually deadly!  
Anyways there are 2 very important reasons why I wrote you this letter. First, I truly believe that we really need to educate our doctors (especially in Canada) about Complex Regional Pain Syndrome (most importantly, we need our doctors to be more open-minded and willing to learn), and I think it starts with making the public aware, letting everyone know about CRPS (knowledge is power, right!). This illness, that is just as debilitating and (in different ways) devastating as cancer, is barely even known about throughout almost all Canadians, let alone Canadian medical professionals! As a result, so many CRPS patients are misdiagnosed and mistreated for years and years! You know, the year is 2004 and this disease was around throughout both World Wars and STILL hardly anyone even knows this illness exists, let alone what it’s about, except for maybe, at the most, a handful of doctors. But the point is that there is no cure for CRPS! And if you think about it, most doctors don’t even know about Complex Regional Pain Syndrome, so they’re not even beginning to look for a cure! Maybe it’s because CRPS isn’t fatal like cancer, but honestly, from my heart, in May 2004 my grandmother died from cancer (colon cancer) and I wish to God that it could have been me!!! For the last year I have been praying to God that I had cancer, because if I had cancer then that would mean that I would get to die. It means that there would be an END, an end to all of my suffering and all my pain. When the pain is at its worst (and that’s pretty much all of the time, in fact the MaGill University’s pain index states that CRPS is the highest form of pain there is) I beg God to take me up to heaven. I tell Him that I can’t do it anymore, that the pain is just too much and I’m so tired of fighting, please take me up to heaven with You! Now you’re probably thinking I’m some suicidal lunatic, but I’m not and (unfortunately) I love my mother way too much to do that sort of thing. Studies have shown that 50% of people with CRPS attempt suicide.  
The other reason I wrote you this letter is because there actually is a tiny ray of hope for me. His name is Dr. H and he has a clinic in Nicaragua devoted to treating people with Complex Regional Pain Syndrome. And the amazing thing is that he is getting amazing results! He has not found a cure, but he is able to (in a great number of cases) reduce pain and increase mobility. Basically he’s able to give people their lives back! Also, Dr. H has even been able to put some of his patients into REMISSION where a patient’s pain is somewhere in between tolerable and non-existent! Some patients can stay in remission for years and years, but it would take barely nothing at all (like a sprain or a fall) and then BOOM, it all can be taken away! All the pain, headaches, spasms, hypersensitivity, swelling and insomnia are back and you can barely even move. You’re back in hell again! I don’t know about you, but I would definitely rather spend even just 1 week in remission with tolerable pain and have it all taken away, than being where I am today, in constant pain! Dr. H is doing excellent, amazing work with CRPS and it sounds like the doctors in Nicaragua know more about CRPS as well but we still need much more education! We desperately need to educate our Canadian doctors (most of them really don’t have a clue!) and it needs to start happening NOW! Basically, we need HELP! ALL CRPS patients need help. I desperately need help!!!  
The truth is that I really need to get to that clinic! Seriously, I think it’s my only chance at having some sort of normal, happy life! And of course, the only thing stopping me is money. For 1 treatment at Dr. H’s clinic, it costs $12,000 and you’re supposed to go every 6 months (but the price gets lower each time you go), plus the price of the plane rides there and back, and because I can’t take care of myself, my mother would have to come with me, as well, one treatment lasts a week and you can’t stay at the clinic, so my mother and I would need a place to stay during my treatment. It just all seems so overwhelming and impossible and we just don’t have anything anywhere near what that would cost! My mother is a single parent (still supporting her 2 young adults) and was just laid off a couple of months ago and (so far) hasn’t been successful at finding a job yet, so she’s been trying to make sure we have enough money to survive on for the next few months, so finding the kind of money needed for even 1 treatment is definitely IMPOSSIBLE for us! I know I’ve said it 100 times but I really do need your help! I just turned 22 (I’m supposed to have a place of my own, be working, studying for school and hanging out with friends) and now, to make matters worse, I’ve been informed that if we’re (my mom and I) not able to take “proper” care of myself with the help I have now (1 home care worker, for 2 hours, from Monday to Friday) then I will be forced into an institution. And believe me when I tell you this, I’ll die before I go to a place like that! My family, most of all my mother is the reason why I’m still here, why I’m still fighting this thing, why I’m still sane and if they were taken away from me, I really don’t know what I would do or how I would cope!!! Honestly, my mother is my best friend! She has been so strong and so supportive throughout all of this, and even though she knows that I might have CRPS the rest of my life (as bad as it is now), whenever I cry or the pain is really bad or it’s Tuesday, my mother always tells me “We’ll get through this together, we’ll get through this together!“ I desperately need her and my brother in my immediate space for as long as humanly possible so, that clinic in Nicaragua is my only hope! I’m desperate for help! Seriously, I need to find a way to get to that clinic or else 2 things will most likely happen:  
1. I’ll get even worse and have to be put into an institution.  
OR  
2. I’ll spend the rest of my life in immobilizing, excruciating pain, not being able to do anything for myself and praying every day for God to take me to heaven.   
Damn that’s depressing!  
  
Well, I realize this has been an extremely long letter and I wanted you to know just how much I really appreciate you reading this! For someone like you to take the time out of your busy day just to read my letter, it really means a lot to me and I can’t thank you enough! I want to make sure that you know that I wrote this letter because I want people to know what Complex Regional Pain Syndrome is so that hopefully one day even 1 person is in less pain (or NO pain) because a doctor happened to be watching TV or heard something from a friend and learned something. That would be SO amazing – even if this letter helped only 1 person! That’s why I wrote this letter, so that I might get the chance (the honor) to help others! If there’s anything you could do to help me, I would be forever (and ever and ever...) grateful, and I must say again THANK YOU for taking the time for me and my letter!!  
From: Desperate for help  
Jackie V  
   
P.S. For more information on Complex Regional Pain Syndrome you can go to www.--------
(This is Dr. H’s web site packed with tons of information.)  
   
If you wish to contact me, please feel free to leave a message on my e-mail at:  
jacqulynn@-------------
   
Note from Jackie’s mother:  
I have typed this exactly how it was written. It’s important also to note that Jackie has taught herself how to write with her left hand! The entire note taking from all of the research, the original draft, rough and good copies were all written with her left hand through spasms, swelling, cramping and pain over the past 11 months!   
This letter in and of itself has been over two years in Jackie’s thought process. What precipitated this letter into taking form was the devastating news of my mother being diagnosed with cancer and having four to six months to live. Jackie felt an incredible sense of urgency during this time. We were not able to attend “Grandma’s” funeral due to Jackie’s illness.  
In closing, I can only say that Jackie has so much love and compassion in her heart. She cries when she sees a child or an animal hurting. All of her hopes and dreams are but distant memories! She wanted to become a police officer so she could help people! Now her goal is to somehow help one person, just one, to have less pain! This letter is such an incredible accomplishment for Jackie and I am so very proud of her!!  

 A few hours later, she got a reply from...

MEL
September 5, 2005 7:47 pm EDT


to jackie!
I... feel your pain. My RSD is spreading fast, on my next visit I have to discuss with my doctors the chronic migraines and facial/jaw/mouth pain I am now experiencing. I also have my teeth getting weaker, and chipping, but cannot afford a dentist as I am hardly able to pay my dr and shrink.  
You are completely right, more people MUST know about this, especially the doctors who think you are just crazy or a drug seeker. I am dealing with a pain dr right now who does not prescribe narcotics, as I am still in phase I. My fiancee does not know if he can deal with this for the rest of our lives, so our wedding is on hold for now. I would be suicidal myself except for my son, who is 8. I cannot leave him!!! I am 29, and I am in tears thinking that this happened to you at such a young age, as mine has progressed only since 2003. My RSD started in my shoulder and neck, and has moved into my back, other shoulder, both arms/elbows/hands and left leg. It scares me that I am now having symptoms in my face and right leg..... 
I sincerely wish I could help you and wish you the best, if you need someone to talk to please feel free to email me at melbor@xxxxxxxxx  
Your letter is powerful and I hope you have had your mom send it to EVERYONE she can!!! 
I am so tired of being dismissed.... 
I will pray for you, Gentle hugs-Mel 

Top Searches: And the Pride Goeth...

Perhaps what I choose to write about is superfluous.

These are my top search terms for the week, as recorded by Blogger Stats.  There are exactly eight that relate to topics I care about, and thought I had addressed in my admittedly confused and confusing style... but c'mon, readers are supposed to do a little work, too.

That's always been my belief.
Perhaps my belief is wrong.
Perhaps what I choose to write about is superfluous.

However, it is also true that I care too much.
I am beginning to write again for the pleasure of it.
I am beginning to feel the awakening of ugly hubris, pouty pride.

I recognize that I am confusing, and that I will label what I write as intricate, complicated, detailed, and demanding rather than spend the time to clean up my prose.

But, for the umpteenth time, I ask you: Whose blog is it, anyway?  
And, yes, I'll try to get this thin-skinned pride thing under control.

The one I really want to understand, though, is "neuron injera l'alcool." Any ideas?  If the searcher has become so enamored of my brilliant posts as to now be a regular Dear Reader, maybe s/he will leave me an explanatory comment?

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Attention CRPS Researchers: CSL Behring Seeks Proposals

CSL Behring Seeks Proposals for the Third Annual Interlaken Leadership Awards
published in Pharmaceutical Processing, Mon, 01/14/2013 - 4:21am

Committed to improving the quality of life for people with rare and serious diseases, CSL Behring is calling for proposals for the 2013 Interlaken Leadership Awards. Established in 2010, this annual global awards program provides monetary grants and/or product supply to advance medical research and knowledge about the potential role of immunoglobulin (Ig) therapy in the treatment of neurological disorders.

“Performing daily activities can be extremely difficult for those living with a neurological disorder, and at times, the condition can even be debilitating,” said Jeffrey Baggish, M.D., Director of Medical Affairs, Immunology & Pulmonary at CSL Behring. “We established the Interlaken Leadership Awards to fund innovative research that may improve the quality of life for those diagnosed with a neurological condition.”

To date, the Interlaken Leadership Awards has provided $2 million in grants to research studying Ig therapy in areas such as neuromyelitis optica (NMO), Duchenne muscular dystrophy (DMD), complex regional pain syndrome (CRPS), acute ischemic stroke, paraneoplastic syndromes, and autoimmune peripheral neuropathies.

Proposal Submission Process and Eligibility: 

Any individual actively engaged in clinical or basic research of polyvalent immunoglobulins for neurological conditions is eligible for the Interlaken Leadership Awards. 

For more information or to submit a proposal, please visit: www.interlakenleadershipawards.com

About the International Immunoglobulin Symposium in Interlaken:  

For more than three decades, CSL Behring has sponsored a high-level scientific symposium in Interlaken, Switzerland. First held in 1981, and most recently in 2009, the International Immunoglobulin Symposium focuses exclusively on scientific and clinical research in the field of polyvalent immunoglobulins. 

Research presented at the Interlaken symposium is consistently at the forefront of immunoglobulin research. Since its inception, the International Immunoglobulin Symposium has won the respect and support of top international scientists and clinicians from many different fields of research. For more information, please visit: http://www.interlakenleadershipawards.com/symposium.aspx

A Pictorial Review of Saturday Morning

Saturday morning routine.

BEFORE:

 "cats, drugs, msnbc, oy!"

uploaded to YouTube by skilled videographer profderien

"the number of medication bottles is misleading, as there are many duplicates. i kind of wish i could say the same thing about the cats, as they are being annoying and i don't like them around the pharmaceuticals. *my* drugs, *my* drugs!  and sometimes msnbc needs to check itself. good morning!"

AFTER:

The Day The Tepid Died

This is a repost only because Feedburner tells me that somehow it was never published, despite the fact that my records show it as appearing in March 2012.  Since I do believe there is a "War on Women," albeit a war waged by idiots (to which I'll double-down on that first "albeit," by saying "albeit idiots who likely are packing heat and out-of-date brittle condoms that have been in their wallets for over 5 years") -- well, anyway, I'll not risk you missing out on the day that "to each his own" died as an expression of any use.

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

It's easy to find examples of the polarizing opinions that fuel our various controversies. Foster Friess tittering over aspirin between the knees. Terry O'Neill tittering over Rush Limbaugh.

In as bewildered a confessional tone as I can muster, though, let me divulge my utter surprise that the social issues being discussed actually constitute controversy.  Those many to the right of me make approbative-sounding throat grumblings, reassuring me that really, it is not the issue so much in question, as its funding.  We don't care if you sluts have beaucoup sex, just don't make others pay for it.  Those of my own directional ilk and the slim margin farther to the left are either speechless from apoplexy or inveterate silver-tongued opportunists.

I call them opportunists, and they snicker.  These are the people who are rarely surprised, who have kept their eyes and ears open, who have not relaxed, the men and women who have my back while I shrug and magnanimously opine a truncated "to each his own."

See, I think myself swift and cool when I mutter "to each his own," because it's so often damn faint praise, just enough of a soupçon of world-weariness to counterbalance my failure as an activist.  Think what you will -- you are so so wrong, of course -- but think what you will...


You see, the secret fear of my life has been that I'd become shrill.  Permanently, and sans cesse.

This morning, I filmed myself, and later asked Fred, as he helped La Bonne et Belle Bianca Castafiore pick out her outfits for the first week of March Madness, when exactly had I become so ugly?  "Ugly?  Ugly?" he cried, precisely twice, as he juggled both his discomfiture and a pink boa.  "You are not ugly! Why do you say that?"

I managed to frighten myself this morning.  I picked up the little Flip camera and shot a few seconds of my fresh-from-rejuvenating-slumber face.  The assurance of my hideousness, it is perhaps long overdue.

Trying to put issues and physical revulsion aside this afternoon, I set out to do some light reading and video-watching.  And I very quickly decided to write this post as a testament to the dangers of the in-between, of those regions buffering, let's say, Freiss from O'Neill.

Because in the Land of To-Each-His-Own, there is a lot of terrifying good-natured stupidity out there, and for the most part, it is being unabashedly documented by The Stupid, themselves.

These ass-scratching, ball-adjusting self-absorbed men have no business grafting their disparate enthusiasms onto the lives of women.  [That would be another way of saying it...]

After setting my new, very slow, unimpressive, but working laptop on my knees, I set out to meander.  I read blogs, timelines, and walls of friends and family, especially enjoying some email from Grader Boob.  He was holding virtual office hours for his online course, and no one had shown up.

Were I out and about, I'd meet all sorts, and I try to approximate the experience when online.  I follow an innocuous comment back to its source.  I click on "next" to see another Blogger blog.  Most of the time, it's fun and rewarding.  Often it shores up my good feelings about the species.  Sometimes it is a riot -- I am particularly fond of consumer comments.  A potential buyer thought to ask the Walmart community about one of the table linens for sale, a 70" round Italian polyester Fauna Rustica tablecloth,  "I like it but do you think it will fit my 69" x 110" table?" It was gratifying to see someone listed as an "expert" reassure her that, yes, it would.

Anyway, I traveled the byways.  I followed boulevards and avenues, streets and alleys, click-click-clicking away... hoping to squash the nascent urge to debate Someone about Something Socially or Politically Relevant.

I came to a Facebook page through thoroughly innocuous means, by following some beautiful jewelry, in fact. There was something almost inherently feminine about the inexactitude of my journey -- plus I got there in a profoundly innocent, almost-Amish kind of way: through the gynecology of Etsy.

[What?  What?  Oh, come on.  Provenance matters!]

So smack dab in the middle of Organic Artsy-Fartsy Handmade Glass-and-Bead Land, the Facebooker posted The Helpful Information reproduced below:

There were several hundred "responses," a good many of them nonsensical [to anyone, I swear!] but most of them were quite clear.  So clear, in fact, that I decided to cull some -- willy-nilly --  for this post, sort of as proof that... well, you know... proof.  That it is not trickle-down but trickle-up?  That up is down, down up?

Diann valid ID...how does that work for all the illegals in this country?????? Valid Id...my son had to have it to be approved for disabiliaty but illegalls don't have to prove anything to get money for their children and food stamps and unemployment. Valid ID..who decides who is valid and who is not.????

Paul  We can't require ID. That would make sense. We don't do that anymore. If you can't afford 10, 20, even 40 dollars every what, 4 years? You shouldn't be voting. In fact you're most likely collecting free assistance and not caring about voting.

Sandy Without an I.D. to record, how do they keep track of how many times a person votes? Just curious. Seems if you don't have to show an I.D. you could just vote anywhere anytime and as many times as you like. Just go from one precinct to the other? Hmmm...we know who would like those odds....Oh I forgot, they don't have a ride to the polling places anyway.

Jeff  Most places that have ID laws also provide ways for people to get them for free. The only reason people make this a controversy is because they want to further the streotype that the GOP is racist. If someone is legitimately poor, they are probably receiving government assistance and therefore had to have an ID to sign up for it. Requiring ID doesn't disenfranchise anyone. 

I don't want to write one of those facile tirades bemoaning the idiocy of internauts or celebrating the heterogeneity of the citizenry, and I really don't want to use the word diversity.  Today I am unable to access forbearance;  I cannot make fun of, nor scoff.  The impulse to correct grammar and to encourage internally consistent logic is an impulse born from spit-spewing exasperation.

"We have to take these bloody people bloody seriously, and engage in a serious way, in serious places," I tell myself.

I march right over to a lefty political bloggy-mag thing that I frequent, where I find a link to a video featuring --

David B. Albo (born April 18, 1962) is a Republican politician from the Commonwealth of Virginia. He represents the 42nd District of the Virginia House of Delegates and has been a member since 1994.

I have my serious face on, by which I mean a very stern demeanor (I filmed myself again, to see what that face was like, and I was still ugly.  Maybe even uglier.  Unquestionably "stern," though.).  You are about to watch an example of what is produced by an elected representative of the people of Virginia on the floor of their statehouse.


Uploaded by notlarrysabato on Feb 24, 2012
"Dave Albo describes how his wife denied sex with him after the vaginal 
ultrasound bill was discussed on Maddow."

This would be about the time when "to each his own" became a patently ridiculous bit of rhetoric, and when my partisan nature reasserted itself with a hearty display of bonhomie -- because I had several immediate suggestions for the love life of Mr. Albo.

Dear Reader, it's way past time that we redefine extreme because it sure seems to lurk in some very ordinary, common places.


I'm gonna go seek out the comfort of my own kind.  I wonder what Bianca plans to wear for the Duke  v. Lehigh match...

[Late-breaking addendum:  The Lady wore black...  Congratulations, Lehigh!]

I Stole This From Ruthie Rader

I want to once again recommend Ruthie Rader's blog to you, this time because she has royally ticked me off, but that seems to be more of a personal foible lately than other peoples' actual fault.
Call it "projection," call it "denial," call it a fever of 102, just get me some frozen strawberries sprinkled with cancer-causing fake sugar and cover it to the precisely right level with nonfat milk. And get me a soup spoon.  You know the one I like -- from two patterns ago.

It makes me feel better.  Cold things.  Even the thought of cold things.

When I was in the hearsepital this last time?  I swear it felt like the alternate universe of hospitals (in my experience).  Caring doctors, responsive and smart nurses, all who redefined the expression "going the extra mile." Critical thinkers, too, from the aforementioned smarty-panted medicos to the food service employees who could reconfigure an overcrowded bedside tray in the blink of an eye, all while making sure you were who you were supposed to be.  (As if I knew...)

Anyway, there was one nurse who listened carefully to my terse declarations about CRPS, repeated so often and almost always ignored, and who asked if ice or something cool made any difference to the pain in my legs.

I guess the answer was pretty easy to discern... "Ohhh!  Ahhhhh!" I managed.

There were days, before I was diagnosed with avascular necrosis, then lupus, then CRPS, then osteomyelitis... that Fred would pack me in ice.  It was the only thing that worked.  Ice packs from head-to-toe.  "Ohhh!  Ahhhhh!" I used to exult.

Anyway, we weren't stupid about it.  He'd let me drift off to sleep and then dare to take the cooling comfort away, pack by pack, kind of like playing a dangerous form of Pick Up Stix.

With the CRPS diagnosis came precious few certainties, but the one everyone seemed to know was "never, never use ice or cooling devices."

"We're serious.  Never.  Ever."

We heard it from the CRPS Impressively Diplomated.  We heard it from the online sufferers, who had heard it from everyone.  We heard it from every physical therapist.  We heard it from the snake oil salesmen.

And not one could tell us the reasoning behind the prohibition.

So, anyway, this wunnerful nurse was wunnerfully made, and said, "Look, it helps, right?  And it looks to me like nothing much else is helping.  I mean, I gave you a boatload of morphine and you asked me, five minutes later, when I was going to give you the morphine!  So while I research this 'no ice' thing, why don't I bring in a couple of ice packs?" Ohhh... Sorry, I'll stop it with the OHs and AHHs, already.

Anyway, I left before she got back to me, so I am back under the thumb of that stupid fear.  But... now that my stomach is leaking blood like a sieve, and my fevers are sucky, I've discovered the brief and icy peace of frozen fruit sprinkled with carcinogens and topped off with milk.

And then... there are Ruthie's photos.  I have stolen one, but I hope YOU understand that this photo was taken by Ms. Ruthie Rader, belongs to Ms. Ruthie Rader, and was purloined from her wondrous blog Ruthie in the Sky, which documents her journey.  And what a journey it is.

When I lack the energy, will, and character to drag my sorry self to the freezer, I can still manage to ogle beautiful pictures of... cold.  Ohhhh....

Photo stolen from Ruthie Rader's blog: Ruthie in the Sky

UPDATE: Is Walmart Pharmacy Ripping You Off?

Hi, Friends!  Well, I gave Walmart -- both locally and at the corporate level -- until today (23 January) to resolve the issue described in the post below (initially published on 18 January).  Now I am turning things over to the appropriate Board of Pharmacy and the Office of the Inspector General.

I'll be adding a brief update in a bit, but the essence of things remain the same:  I just got off the phone with my insurance company, and the rep there said they now have record of four attempts to run the prescription through -- still without prior approval, still at the unapproved price, and so on.  Pretty pitiful.  Someone doesn't want to give up the change jingling in their pocket.

UPDATE, on 23 January 2013:  The die is cast.  Contacted with full details, I've asked for investigation from my state's Secretary of State, who oversees the Board of Pharmacy as well as the entity in charge of pharmacy licensure, from the US Department of Health & Human Services (HHS), Office of Inspector General (OIG), Office of Investigations (OI), OIG Hotline Operations, and I updated MEDCO/ExpressScripts on all of these shenanigans.  MEDCO/ExpressScripts provided me with a particularly illuminating bit of information.  While Walmart Pharmacy charged $170 for this poor beleaguered prescription, and that for a thirty day supply, MEDCO/ExpressScripts would have required a $150 charge for a NINETY DAY supply.  Yowza! There is more of my cash stuffed in some ne'er-do-well's wallet than I thought.  It is a bona fide pain in the booty to do all of this, but I am so grateful to President Obama's ACA provision, the creation of PCIP, which has helped me to help myself, that I can't let this con go on... Besides, I want my money back.

UPDATE, on 1 February 2013: Well, two of three investigations are afoot!  And in the interim, Walmart has continued its idiocy.  They notified be my email late one evening, around 11 pm, that my "prescription is ready!" but dated it November 2012 and that if it were not picked up my November somethingsomething 2012, it would be "canceled." Clever idiots!  But best of all... actually, scariest of all, they REWROTE the prescription, but kept my doctor's name on it.  Uh-oh.  That's *beyond* DUH.  On the positive side of things, my properly filled 90-day supply of the medication is scheduled to arrive on Monday from Express Scripts.

the cheerful logo

First, I want my Dear Readership to know that I am not writing in anger, nor even in frustration.  I sort of expected to have to take this matter "public," and so have been surprisingly circumspect over the last few weeks of this rather bland drama.

But it concerns health care fraud, and that's something I've become much too familiar with, and something I have decided I won't abide and that I will confront, in any way possible.

There is a corporate entity involved -- and remember, "corporations are people, too" -- and that corporation is huge: Walmart.

My particular charge of health care fraud by Walmart is not an all inclusive one.  I don't know that it extends beyond the local mega-store pharmacy we've dealt with, but since this is the second instance of it occurring to me, I feel comfortable with the assumption that it is fairly widespread.

Here's the story:

Following my recent hospitalization for g.i. bleeding, I met with my superb MDVIP Go-To-Guy Doctor on January 3, 2013.  In reviewing my medications, we noted that I had progressed through the usual drugs that protect the stomach and esophagus, and that they clearly had failed to provide enough protection.  That left, of course, ONE drug to try.

This drug would require, he told me, "prior authorization" from the insurance company, as they need to know that the proper order of drugs had been tried, and that they had failed.  That made sense and he was ready to provide the necessary documentation.

I am one of the lucky Americans -- blessed, even -- to have benefited from the Affordable Care Act through the creation of the Pre-Existing Condition Insurance Plan (PCIP).  After having BCBS gouge me and drive me out of coverage by requiring a premium of $1513 a month on top of a huge deductible and reduced benefits, PCIP was a life-saver, allowing me to continue to be responsible for my insurance payments, but payments not designed to impoverish me (further!).  I found PCIP, administerd by GEHA, to be incredibly efficient and well run.

Through PCIP, I had access to the mail-order pharmacy Medco, that has now merged with Express Scripts.  I receive all of my "established" and longterm medications through them.  When I first start a drug, the routine is to take an initial prescription to a local pharmacy, so that we can make sure the medication works before we establish the longterm prescription via mail-order with Medco.

The local pharmacies -- as you all know -- then run the new prescription through the insurance company and charge the negotiated amount, which is then applied to any outstanding deductible, as well as following any proscriptions such as requirements for "prior approval."

My doctor called in the prescription to the local Walmart pharmacy that we have used for years and expected to be queried for supporting documentation for the prior approval.

Giving it a few days, I began checking the nifty online access to prescription information provided by Walmart -- and each time saw that the prescription was "processing."  When a week had passed without word, I called.

The first person I spoke with confidently told me that they were waiting on my doctor's office to supply the prior authorization information.  That sounded odd to me, but in the realm of the possible.  "Would you like us to fax him again?" I said that sounded like a great idea.

So, of course, I checked with my doctor's office.  The stories did not... coalesce.  They'd not yet been contacted, at all, by anyone.

By chance, as all this was floating around my head, I was cleaning out my email box, and Miracle of Miracles found an email from the day before, from my local Walmart Pharmacy, saying my prescription was ready to be picked up!  They listed a charge of about $170, which made me wince but was not unexpected.

It is the season, after all, of new deductibles.  I had a terrible year, health-wise, in 2012, and had hit "catastrophic" coverage of 100% ridiculously early in the year.  But 2013 has arrived and it was time to feed the deductible again.

I gave Fred a head's up, requesting that he pick up the mysteriously ready drug, and he headed out -- Fred is ever kind.

He came home angry.  The local Walmart pharmacy had not filled the prescription, telling him: "We weren't sure she would want to pay for it."  A very strange thing to say, an odd assumption to make, and, were they really so concerned about my desire or ability to pay, they had myriad ways of contacting me to simply ask.

Anyway, after asking him to "shop for a while," they filled it, he paid for it, and came home -- still mad, and also laden with odd puchases he'd made while wandering the aisles!  We've enough bird seed for the next few years and the cats have sufficient litter for months, and me, five varieties of apples.  Bless Fred.

Okay, so, yes, then I got angry, too.  During the extended wait -- he was gone several hours -- I checked online with Medco to learn about this new med, and then to verify what the price should be, and to see when the prior authorization had been resolved.  The disconnect between the woman on the phone telling me the rx was NOT filled because of waiting on my doctor to fulfill his obligations, and the email trumpeting that the drug was ready, and had been ready for a full day... well, it just bugged me.  I double-checked and the Walmart site still listed the rx as in "processing" mode.

That's a whole bunch of irreconcilable truths.

To which I could now add another:  Medco's listed price for an outside pharmacy was very different from the $170 Walmart had pulled out of its hat.  And they still marked the drug with an asterisk, reminding me that they would need to prior approve the med.

Walmart had never contacted Medco at all.  Nor my doctor.  And it appears that they had even failed to talk to one another in concocting a cover story.  How do I know that?

I called the local Walmart pharmacy again, and this time spoke with a not-so-deft liar.

First, I thanked him for getting me the drug without obtaining prior approval.  How had they managed that, I inquired.  Lonnngggggg pause.  "Um, we knew that you must really, really need it."
It went downhill from there.

You should know that this is the second time this particular pharmacy failed to run one of my prescriptions through my insurance for proper approval, appropriate pricing, and credit of my payment to my deductible.  At that time, I dealt with one ne'er-do-well, and felt like the issue was resolved -- although he claimed to be unable to give me the appropriate refund by crediting the credit card used in the purchase, and actually insisted that we take cash.

I have access to two pharmacies close to Marlinspike Hall, and the other one rarely has the drugs I need, so I had returned to Walmart for these, usually, one-month supplies.  They had filled other prescriptions the day after I was released from the hospital in December -- no problems, but again, that was back in the year of 100% coverage.

The icing on the cake during that second phone call?  I explained in clear terms my comprehension of this scam, that they'd not gotten away with it last time, and that they would not this time.  However, I told the stammering man, this time I was not feeling so forgiving and if they didn't rectify things immediately, "I will come after you."

"Yes, ma'am.  Okay."

This nonsense is so tiring.

I then sought ways to contact Walmart corporate entities.  Good luck with that, my friends.  I emailed what purported to be a corporate contact and received no response.

Were I a corporate entity being accused of health care fraud?  I'd not ignore me.

Since then there has been a flurry of Twitter offers to "help," to "listen," and even to "resolve." All from people named John and Betty and Jane and Belinda.  No last names, no identification information, just Twitter nonsense.

I was asked four times to resubmit what I had written to "corporate."

I had no intention of blogging about Walmart's fraud -- which must be widespread if it has happened to me twice -- until I got this in my email box.  Oh -- you should know that I never allow conflicts such as this to be addressed by telephone contact.  I have a weird hangup about getting things in writing.

I also had no intention of contacting the Office of the Inspector General or my local Board of Pharmacy, either, but I am seriously considering it, now.

Why now?  Because I finally got a response, of sorts.  From a Walmart FACEBOOK page "person" named Shannon.  In essence, the Walmart Facebook team couldn't do a darned thing without my phone number.  So sorry!

That's okay, I reassured the obviously distraught Shannon.  I have a blog.

Felon Feline

Well, this video puts the thievery of our three cats into perspective -- they're but novices compared with this brazen little guy named Denis, caught in a "CCTV [compilation] stealing household items" from neighbors.  I am guessing that the neat little packages rolled in butcher's paper contain special goodies that probably cannot be returned to their rightful owners.

Published on Jun 12, 2012 byDenis Cat Burglar Newman

Denis the Cat Burglar, in conjunction with his human parole officer, in an effort to give back what he can to the community which he has so blatantly robbed, heads a charity in Luton, Bedfordshire, about 50 km north of London:

Homeless Cat Rescue is a non-profit organisation based in Luton, Bedfordshire. We are a small organisation and rely totally on the generousity of the general public for support.  

Homeless Cat Rescue takes in stray, unwanted and abandoned cats and kittens for re-homing.We also trap, neuter and release feral cats.  

We believe strongly in neutering and spaying. All our cats over 6 months old are neutered before rehoming. Kittens under 6 months old will only be rehomed on the understanding that new owners get the kitten neutered at their own expense once the kitten has reached 6 months of age. 

All our cats for rehoming stay at foster homes until permanent homes are found.
We always home check. 

If you believe in the possibility of rehabilitation for felons, umm, felines, consider some of these suggestions:

Please watch and subscribe to our lovely sponsor, Denis Cat Burglar Newman on our YouTube link.  All monies raised goes to helping the cats in our care. 

Please consider buying a homeless cat something from their Amazon wish list.
(We are sorry we can not thank you for purchases from our wish list but Amazon doesn't provide us with the donors information) 

We sometimes list items for sale on our Ebay site. 

Any money donations will be gratefully recieved. This can be done through PayPal, please send a gift payment to our email address: homelesscatrescue@hotmail.com If you wish to send us a cheque or postal order, please contact us. 

J2: Get out your tears-of-happiness hanky!

The goodness and technical proficiency of these people lightens the world.

POEMTALK is a collaboration of the Kelly Writers House, PennSound, and the Poetry Foundation. PoemTalk's producer and host is Al Filreis, our engineers are James La Marre and Chris Martin, and our editor for every episode has been Steve McLaughlin, who is also podcasts editor of Jacket2. PoemTalk is also available on iTunes. Click this link to subscribe...

Ready?  Get out your tears-of-happiness hanky:


INDEX OF EPISODES
PT#1: William Carlos Williams between walls 
PT#2: Adrienne Rich won’t wait
PT#3: George Oppen’s ballad
PT#4: Allen Ginsberg sings Blake
PT#5: Ted Berrigan's "3 Pages"
PT#6: Jaap Blonk sound poem
PT#7: Jerome Rothenberg's paradise
PT#8: Rae Armantrout's "The Way"
PT#9: John Ashbery at a crossroads
PT#10: one of Gertrude Stein's portraits
PT#11: Erica Hunt’s "voice of no"
PT#12: Ezra Pound’s America
PT#13: Kathleen Fraser’s dangerous highway
PT#14: Wallace Stevens at the end
PT#15: Lyn Hejinian’s change
PT#16: Creeley driving the car
PT#17: Rodrigo Toscano's political poetics
PT#18: Lydia Davis has a position
PT#19: Bob Perelman’s inner unruly child
PT#20: Amiri Baraka’s Kenyatta
PT#21: Charles Bernstein’s restlessness
PT#22: Louis Zukofsky begins anew
PT#23: Cid Corman really knew terror
PT#24: Barbara Guest, a poem about painting
PT#25: Alice Notley on the Lower East Side
PT#26: wild Vachel Lindsay
PT#27: Robert Duncan opens the field
PT#28: Jack Spicer to shrink: drop dead
PT#29: Kit Robinson ponders mad men
PT#30: the W. C. Williams we remember
PT#31: Robert Grenier’s box of poem-cards
PT#32: Susan Howe’s Emily Dickinson
PT#33: flarfist Sharon Mesmer
PT#34: Charles Olson’s Maximus
PT#35: Bruce Andrews at the center
PT#36: J. Scappettone writes through H.D.
PT#37: Jena Osman drops leaflets
PT#38: Norman Fischer would like to see it
PT#39: Etheridge Knight & Gwendolyn Brooks
PT#40: Susan Schultz blogs dementia
PT#41: Ezra Pound in Venice
PT#42: Nathaniel Tarn’s eco-poetics
PT#43: John Weiners by night
PT#44: Fred Wah’s race to go
PT#45: Eileen Myles does what she teaches
PT#46: Jackson Mac Low writes through Ezra
PT#47: Rosmarie Waldrop's America
PT#48: Edgar Allan Poe’s “Dream-Land”
PT#49: P. Inman advocates slow writing
PT#50: Tom Raworth’s state of error
PT#51: Linh Dinh on race, food & war
PT#52: Cole Swensen on art & gardens
PT#53: Joan Retallack’s homage to Cage
PT#54: Ron Silliman’s “You”
PT#55: Jennifer Moxley’s line
PT#56: Charles Reznikoff’s Mishnaic poetics
PT#57: Djanikian & the alphabet of genocide