Thursday, February 7, 2013

Britt Merrick: "When Sparrows Fall": Matthew 10:28-31



To see previous posts about Daisy Love Merrick, click HERE.  For lots of info on Daisy, her family, and background to their story, visit Pray For Daisy.




This is a 55-minute long video of a sermon delivered by Britt Merrick* at one of the network of churches he founded called "Reality." This is, I believe, his home church, in Santa Barbara.  You can learn more about Reality churches and missions HERE.  They see their growth as part of a process called "church birthing," to emphasize their own emphasis on family, as a reality and as an idea.

Reality is a family of churches. Reality Carpinteria was born on September 7, 2003. Since that time we have birthed churches in Los Angeles, Stockton, and San Francisco, CA. We also have a grandchild in London, England, that was birthed from Reality LA. Our next church will be in Boston, MA and is scheduled to start in the fall of 2012. God has called Reality to be a church planting movement.  We never sought to be this, but it has become clear that this is what God is calling us to do and be, and it is something we are passionate about.
Though planting is the common metaphor for starting new churches, we prefer to call what we do church birthing. Birthing is more labor intensive and relational than the planting metaphor suggests.

Britt is on a leave of abscence from his pastoral duties and this is a sermon that he felt called to deliver to update the community about his daughter, Daisy, Daisy Love, Daisy Love Merrick.  A very cool, brave little girl who is actively dying, trying so hard to die with grace, within the love, grace, and faith of her family, whom she knows to be around her here and waiting for her in Heaven.



The Merricks took Daisy to Israel over the summer for some treatments not available in the United States -- immunotherapy, cancer vaccines, much of which involved the transfer of cells from Britt to Daisy.  They road camels.

Daisy and her brother Isaiah
They surfed and swam.  (The Merrick family is, well, a surfing dynasty.)

Daisy surfing in Israel
Matthew 10: 28-31 reads:

28 Don’t be afraid of those who kill the body but can’t kill the soul. Instead, be afraid of the one who can destroy both body and soul in hell. 29 Aren’t two sparrows sold for a small coin? But not one of them will fall to the ground without your Father knowing about it already. 30 Even the hairs of your head are all counted. 31 Don’t be afraid. You are worth more than many sparrows.

I look at this picture -- among others -- every few days, when I wonder what is happening within. and to, Daisy, Daisy Love, Daisy Love Merrick, Daughter of the Surf. Freckled Little Girl of Inspiring Imagination, and I don't pray.  I prayed for Daisy once, and that -- from all I understand
about omnipotence and stuff -- ought to have been enough.  Whenever Britt or Kate call for prayer, I bow my head, think of them and their terrible pain, of Isaiah's probably anger and confusion, and always, in that dumb bowed head, see Daisy's face, which, although I know its beauty must be greatly changed, I forever see this way:




And while no prayer comes out, I try to send them love from my heart, and I imagine holding their hands -- thin, dry, damp, sweaty, clenched in a fist, open in a stroke, seeking -- scuttling hands, worrying thumbs, wavering fingers.

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

*His biography at the Reality Santa Barbara website reads:

I am the founder of Reality and the current Pastor for Preaching and Vision. This means that I do the bulk of the preaching on Sunday mornings for all three campuses, that I guide the church doctrinally, and lead the effort to discern in community (with a plurality of elders) Christ's leading for Reality. The passionate pursuit of my life is to enjoy Jesus. I love my wife Kate, my son Isaiah and my daughter Daisy. I also love surfing, guitars, motocross and books.

Wednesday, February 6, 2013

i believe! i believe!

Renaissance Grilles / Registers /  Vent Covers  - Rectangular


it's two in the morning and my body needs rest.  the mind, though, oh, *blank* and *bleep* the mind -- like all three cats, it thinks it's time to play.  damn the kona coffee we thought it would be great to drink around 10 pm -- "it's like drinking sweet warm chocolate milk." next time, i say let's get the beans shat from the toddy cat, that shriveled civet.  let's make it worth the insomnia.

i've been low sad and high happy, and all to the tune of old music all day.  i've also had a major episode of g.i. bleeding, avec pain this time, and it has put my resolve to the test.  god's big red pen is still hovering over this day, ready to scribble all over my margins, advise an adverb for my already outrageous adjectives.  god can be a little much when it comes to composition.  someone should snatch that red pen away, just for giggles.

i stopped using red pens those last years i was grading, bleeding ink.  there is something so awful about getting a paper back with red all over it.  but then, when i began teaching in high school, i was faced with some pretty ugly results -- because the students used pens of many colors.  sometimes my red pen would have been a relief to their greens and purples and, heaven help me, even silvers and grays.  you know that sage advice -- "pick your battles"?  well, when you have kids breaking your hip, threatening to kill you, submitting suicide notes as compositions... well, the color of the ink isn't usually one of the battles worth fighting.

so low sad, high happy, all acted on a stage by an orchestra pit from which boomed old songs, most of which were not even favorites.

Truckin' - got my chips cashed in

Keep Truckin - like the doodah man
Together - more or less in line
Just keep Truckin on

Arrows of neon and flashing marquees out on Main Street
Chicago, New York, Detroit it's all on the same street
Your typical city involved in a typical daydream
Hang it up and see what tomorrow brings

Dallas - got a soft machine
Houston - too close to New Orleans
New York - got the ways and means
but just won't let you be

Most of the cats you meet on the street speak of True Love
Most of the time they're sittin and cryin at home
One of these days they know they gotta get goin
out of the door and down to the street all alone

Truckin - like the doodah man
once told me you got to play your hand
sometime - the cards ain't worth a dime
if you don't lay em down

Sometimes the light's all shining on me
Other times I can barely see
Lately it occurs to me
What a long strange trip it's been

What in the world ever became of sweet Jane?
She lost her sparkle, you know she isn't the same
Living on reds, vitamin C and cocaine
all a friend can say is "ain't it a shame"

Truckin' -- up to Buffalo
Been thinkin - you got to mellow slow
Takes time - you pick a place to go
and just keep Truckin on

Sitting and staring out of a hotel window 
Got a tip they're gonna kick the door in again
I'd like to get some sleep before I travel
but if you got a warrant I guess you're gonna come in

Busted - down on Bourbon Street
Set up - like a bowling pin
Knocked down - it gets to wearing thin
They just won't let you be

You're sick of hanging around and you'd like to travel
Tired of travel, you want to settle down
I guess they can't revoke your soul for trying
Get out of the door - light out and look all around

Sometimes the light's all shining on me
Other times I can barely see
Lately it occurs to me
what a long strange trip it's been

Truckin - I'm goin home
Whoa-oh baby, back where I belong
Back home - sit down and patch my bones
and get back Truckin on


i did accomplish something momentous, however.  i tried to pretend, for about a minute, that it was a touching thing, a heart-mover, but hell, who was i kidding?!  unless you are a longtime dear, dear reader, you know nothing of my beloved cat sammy (sam, puddin' head, stinky head, but officially "sam-i-am") and unless i want to dissolve into tears, we'll just leave it at that.  i am sure that if you enter "sam" or "sammy" into the blog search, you'll find posts and pictures of my beloved boy.

well, sammy struggled with many things.  paranoia.  mostly of marmy, whom we thrust upon him when she was 8 months old, feral, hugely pregnant, and decidedly mean.  okay, okay, she was a street urchin and had seen some damned hard times, and was wayyyy out-weighed by the five kittens inside her, so we will say instead that she was decidedly... no, i'm sorry, she was the meanest animal i'd ever met.

sammy was sensitive.  like me.  {shut up, shut up!  honey badger don't care!}  we had to pick him up and carry him past her to the litter box or he would not go.  no, instead, he would relieve himself somewhere in my vicinity, because, in sammy logic, i had brought this vicious girl upon his head.
eventually, i was feeding him in the one corner of the bedroom where he apparently felt safe. is was absolutely ridiculous but i loved him all the more for his weirdness.

later his erroneous peeing was attributed to a failed neutering, or to hyper-territoriality, or to whatever our vet's theory of the month turned out to be.  too bad that sucky vet didn't consider kidney/urinary tract disease, because that is what it was... and by the time the sucky vet figured it out, poor sammy was doomed.

we kept him alive and happy for more years than anyone thought we could -- fred and i have a knack for that.  we hope to do it for one another, but it's not working out so well.  anyway, after the horrible day we euthanized my sammy boy, on a merry fourth of july, we discovered lingering gifts when the seasons changed and we turned on the Manor's furnace.

from two vents, in particular, issued forth a smell that said "sweet sam-i-am was here" and "my goodness, how cloyingly, sickly sweet... like a terrible chablis" -- but eventually devolved into "oh god, it stinks!"

i clean like a cleaning maniac.  there's no dirt in Marlinspike Hall that isn't meant to be there -- exceptions must be made for areas of deteriorating daub-and-wattle, and some odds-and-ends of medieval stuff.  the furnace heats only the newer extensions, built by Captain Haddock's third mother-in-law, who had a thing against icicles inside her quarters.  and sammy managed to pee down at least two of the primitive registers... my sweet sammy.

well, by jove and by minerva, i solved that problem today.  we had -- ever thinking -- put a huge bookcase over the worst of the stinky registers, and made sure to close the vents.  so i removed book after book, starting out two at a time, then rapidly regressing to one.  circumstances of space dictated that i use the arm without the shoulder, so that's when the day's soundtrack first started getting a bit strange.


Night time sharpens, heightens each sensation
Darkness stirs and wakes imagination
Silently the senses abandon the defenses

Slowly, gently night unfurls its splendor
Grasp it, sense it - tremulous and tender
Turn your face away from the garish light of day
Turn your thoughts away from cold unfeeling light
And listen to the music of the night

Close your eyes and surrender to your darkest dreams
Purge all thoughts of the life you knew before
Close your eyes let your spirit start to soar
And you'll live as you've never lived before 

Softly, deftly music shall caress you
Hear it, feel it secretly poseess you
Open up you mind let your fantasies unwind 
In this darkness which you know you cannot fight 
The darkness of the music of the night

Let your mind start a journey through a strange new world
Leave all thoughts of the life you knew before
Let your soul take you where you long to be
Only then can you belong to me 

Floating, folding, sweet intoxication
Touch me, trust me, savour each sensation 
let the dream begin let your darker side give in 
to the power of the music that I write
The power of the music of the night

You alone can make my song take flight
Help me make the music of the night


so i finally had all the shelves emptied that were within my reach... and even progressed a little farther with the aid of the handy-dandy ubiquitous grabbers stashed about.  maybe i added an hour to the task because i had forgotten that these were mostly fred's very fine small library of photography books.  by which i do not mean "picture books," though they certainly are full of pictures... but they're more like histories -- of magnum, and war journalism, studies of weegee and cartier-bresson. good stuff.  i barely noticed the smell of sammy's overheated piss.

fred buys all kinds of crap at places like the dollar store.  oh! no!  even more often, he picks up these 99 cent amazing cleansers and magical elixirs at a nearby thrift store, where we buy our best fiction.  i confess to have fallen into the nasty and off-putting habit of sighing and rolling my eyes when he presents his latest detergent-oriented finds.

i am gonna go ahead and just put this squarely on the pointy heads of MEN. if a product promises that all you need do to clean something like, say, a shower, is spray their usually blue stuff religiously onto the shower walls for 84 weeks -- no scrubbing required -- why, you'll have to sport wrap around ray-bans to avoid the glare of those pristine tiles!  never, ever, is scrubbing or exertion of any kind required.  that's why god made magic enzymes and proprietary formulas that you mix yourself in spray bottles.  WOMEN know better.  that's why we sigh and roll our eyes so much.

you're welcome.  glad i could clear that up for ya!

however, fred moved on to internet ads as his sanitary inspirations and one day recently a box of Fizzle, about which testimonials swore amazing results on anything foul resulting from any excretion from any part of your pets body -- arrived.  a plain paper box.  he mixed some up straight away and with the next liquidy sort of hair ball, promptly sprayed nearly an entire 3 x 5 foot area rug with the stuff.  never mind any precaution like carefully testing some unseen corner of a fabric before drowning it in chemicals not identified on the packaging...

and it worked.  he reveled in his cleaning superiority and i became used to seeing spray bottles of Fizzle placed strategically around Marlinspike Hall, as he used the bottles to "mark the spot," so that he could point out that the Fizzle bottle marked... nothing!  whatever offensive piece of pet organic material had been there, Fizzle had made it disappear.  some mornings, when i am still bleary, i get the sense that they're lined up like traffic cones and i am supposed to rev up the wheelchair and run some strange, timed x-treme Fizzle bottle obstacle course.

so after i hurt myself badly shoving the bookcase out of the way, and after prying up that nasty, nasty register, and after washing/scrubbing said nasty register, and sticking the vacuum nozzle as far down as i could cram it, sucking up i do not even wanna know what... i sprayed almost an entire bottle of Fizzle down the dark, deep hole.  i waited a bit and added a strong mixture of rubbing alcohol and water.  i topped off this cocktail with white vinegar that had been waved over vermouth.  alone and possibly reacting to the fumes, i emptied an entire can of lysol -- "crisp linen" -- into the register duct's gaping maw as well as over my head, on the piles of books, and in the general vicinity of everything.

i had, of course, turned off the heat.  i ain't stupid, and being a Fizzle convert and a longtime lysol adherent, i wanted to give these fine products hours and hours, if need be, to kill the last remnants of my darling russian blue's last gift to us.

you guessed it.  it got pretty cold and as i am perpetually doing the i'm freezing dance from my daily blessèd fevers, when fred came home, i used concern for *his* comfort as a cover, and cranked on the heat.  (you can add that to my gender lesson from above -- WOMEN do that kind of thing -- we get what we want by claiming our MEN really need it.)

and... no smell!

also, it turned out that the second register had not been baptized in sam-i-am's tainted waters -- rather the outside edge of another bookcase had been so brought to the lord.

i hate to say it, though i sure do say it a lot, it seems, but fred is oblivious -- and often -- to when i need help.  maybe it's a good thing, in certain situations, as it forces me to become inventive and to ask more of myself.  but in this case, i am pretty sure i broke another damn rib.

i moved the big bookcase we have been discussing back over the now unoffensive register, and then moved the table upon which i had piled all of these books.  the lovely photographic histories, and the three shelves of dean koontz and maeve binchy -- hardcovers, all.  not to mention what was normally on the damn table -- one buddha, many framed photos, including, ironically, one of the dead cat, and a pile of books that did not belong yet to any assigned bookshelf, as they were ones we were preparing to read.  one day soon.

i did it rapidly, hoping the pain would follow suit and quickly come and go. ha.

then i crammed the wheelchair between the shifted table and the offending smaller bookcase, because sammy, being sammy, had chosen its corner next to the wall upon which to piss.

i am sorry, stephen king.  my regrets, nevada barr.  my profound sympathies, as well, to shakespeare and ibsen.  and i cannot begin to apologize to my friend who actually published a novel, now sticky and diabetically-inclined to pure sweet stinkiness -- it was, i swear to you, still damp. i threw them all away.  it was the first time i'd ever tossed a book that *might* have been salvagable -- with the investment of days of labor and the likely result of still pungent pages, all oddly curled.

then, even as ensconced as i was, jammed, in fact, i could not reach the bookcase itself to clean it.
grabber to the rescue, again!  i took a handy-dandy kitchen towel, rinsed it in hot water and in a potent mixture of all the alchemy that had gone down the register's drain, and swatted and swiped until the smell was no more.

i am the queen of clean.

maybe now we will actually use the room as a library, its original designation.  well, after being our first dining room and then t.v./wii space.

the table remains where i left it, the books still piled upon it, and i have no intention of even trying to put things back in place.  my non-shoulder shoulder area is making grinding, squishing noises and my fever did a dance on top of what is usually its apex.

by then, my ears were picking up strains of mozart's don giovanni.  thank god, because i thought for sure i'd be stricken with the requiem.


Madamina, il catalogo è questo                                                                                                                                           
Delle belle che amò il padron mio;
un catalogo egli è che ho fatt'io;
Osservate, leggete con me.
In Italia seicento e quaranta;
In Almagna duecento e trentuna;
Cento in Francia, in Turchia novantuna;
Ma in Ispagna son già mille e tre.
V'han fra queste contadine,

Cameriere, cittadine,
V'han contesse, baronesse,
Marchesine, principesse.
E v'han donne d'ogni grado,
D'ogni forma, d'ogni età.
Nella bionda egli ha l'usanza
Di lodar la gentilezza,
Nella bruna la costanza,
Nella bianca la dolcezza.
Vuol d'inverno la grassotta,
Vuol d'estate la magrotta;
È la grande maestosa,
La piccina e ognor vezzosa.
Delle vecchie fa conquista
Pel piacer di porle in lista;
Sua passion predominante
È la giovin principiante.
Non si picca - se sia ricca,
Se sia brutta, se sia bella;
Purché porti la gonnella,
Voi sapete quel che fa.



My dear lady, this is a list
Of the beauties my master has loved,
A list which I have compiled.
Observe, read along with me.
In Italy, six hunddred and forty;
In Germany, two hundred and thirty-one;
A hundred in France; in Turkey, ninety-one;
In Spain already one thousand and three.
Among these are peasant girls,
Maidservants, city girls,
Countesses, baronesses,
Marchionesses, princesses,
Women of every rank,
Every shape, every age.
With blondes it is his habit
To praise their kindness;
In brunettes, their faithfulness;
In the very blond, their sweetness.
In winter he likes fat ones.
In summer he likes thin ones.
He calls the tall ones majestic.
The little ones are always charming.
He seduces the old ones
For the pleasure of adding to the list.
His greatest favourite
Is the young beginner.
It doesn't matter if she's rich,
Ugly or beautiful;
If she wears a petticoat,
You know what he does.

i had hoped the tale would wear me out, but her it is almost 4 am.

i do thank you very much, however, for allowing me this means of public distraction, which is great for ignoring pain, and public humiliation, which Abbot Truffatore always highly recommends as a general tonic for the soul.

talk at you later, dear reader.  hope along with me that some manor elves will put all the bookcases and books and tables back where they belong.  i believe!  i believe!

Saturday, February 2, 2013

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?



anatidaephobia duck
bianca castrafiori
buddy kitty
cat heimlich maneuver
chico state
charles joseph whitman
cibulkova ass
claymation porn
coach k 903
crps
cushingoid
desert como
dr. jose ochoa
dr. phil divorce
finally theme song
georges prosper remi
happy birthday carolina tarheel
hole ketamine 
http://xxxpornoestremis.com
illuminated s
jackson browne
jackson browne 2012
kama sutra
kamasutra
ketamine treatments stony brook hospital
laura becket
madeleine 
maroloinespike hall
monopoly game pieces
moulinsart
mugshot celebrity
naked veterinarian calendar
neuron injera l'alcool
oregon nerve centre ochoa
rashad evans
rashad evans house
rashad evans wallpaper
red
rsd
ruthie rader
serena black ass
soup nazi
syldavian klow restaurant images
taiji
taiji dolphins
taiji japan
thomas ravenel marrie
uglyiest
vit c crps
wal-marts
xxxsex pakistani

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:


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:


Friday, February 1, 2013

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  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.