Wednesday, December 31, 2008

S.O.B. ALSO Means "Shortness Of Breath"...

And I have been SOB...not to be confused with AOB (alcohol on breath). I've also been a bit MIO (missing in action) due to my SOB and hope to BBS (be back soon).

I'm currently on a Z-pac (antibiotics) for bronchitis and "possible" pneumonia, which has only served to "kick up" my MS (Multiple Sclerosis) symptoms. My ARNP (Adult Nurse Practitioner) says "possible pneumonia" (by symptoms) because I haven't had a chest X-ray done to confirm this. I was snowed in until this past Sunday and, frankly, feeling too ill to mess with getting somewhere to have an X-ray taken. I was on day 3 of laryngitis yesterday (haven't tried my operatic voice yet today to see if it has returned), with wheezing/cough/gurgling in my lungs, low grade fever at night, night sweats, severe fatigue, shortness of breath, stabbing knife-like pain just below my sternum (breast bone) when I coughed, and a few other respiratory symptoms.


TTFN (Ta ta for now) BFF's (You guys)...

Monday, December 29, 2008

It's Alive!...


Barely...but surviving. Went to yell some obscenity at the P.O.D. today, only to discover I had developed a severe case of laryngitis...as in, totally lost my voice...air squeaking out, but no sound.

The world may be rejoicing at the moment given the quiet circumstances...

Friday, December 26, 2008

Temporary (debatable) Lapse In Sanity...

TippyTopple:

Thank you for your reply...I WON'T post your most recent comment due to the private nature of the content (which, BTW, I DID already know where you work...the Internet is so transparent.), but I DO very much appreciate the sincerity of your response. And I will post MY update here:


(For those of you "not in the know", I posted a quite "curt" reply to TT's comment on the post "Send Food/Water/Medicine...Please", which I later deleted due to a temporary lapse in sanity in posting it in the first place!)


My neighborhood remains without bus transportation, in spite of recent snow-changing-to-rain, because the City of Seattle STILL has not cleared our roadways...we continue to have about 6 - 8 inches of ice-covered snow on our streets, which even Metro Transit will not attempt to navigate, while the rest of the city *appears* to be returning to some semblance of normalcy. This basically means, we REMAIN stranded in our neighborhood unless someone has all/wheel, 4/wheel, or chains on their vehicles to get us out.


My neighbor, Ms. B, was able to get her daughter to take a bus from the SeaTac area (near the airport) as close as she could get to my neighborhood (that *closeness* would be 4th and Jackson DOWNTOWN...about 2 1/2 miles away), WALK in the rest of the way, THEN WALK up the hills to Ms. B's pharmacy provider (about another 1.8 miles away...round trip to pharmacy, a little over 3 miles) to retrieve her diabetes/HTN medications. And my elderly neighbor, Mr. T, probably has some mild frostbite to his hands, but I'm told REFUSES to go to Harborview ER for evaluation.


As for me...I TOTALLY respect Mr. T's decision! LOL I have also NOT sought out in person medical evaluation (via ER, because that's ALL that's open around here) for what I am certain is viral bronchitis. "Why, HOW do you know this, BRAINCHEESE?" you may be asking.


Well, here's how I can be fairly certain. My symptoms began slowly over the course of about 4 days, culminating into white patches on my tonsils, sore throat, head/chest congestion, cough, low grade fever (100-ish, no matter if I took Ibuprofen or Tylenol...another tell-tale sign a virus is lurking...fever neither spikes high nor goes away entirely), malaise, aching joints, lack of appetite, and a *freight train roaring* in my chest as well as serious wheezing when supine. I listened to my lungs (hey, EVERY nurse owns a stethoscope!) and did not hear any gurgling/rales/ronchi or diminished breath sounds (typical airway assessment)...just AmTrak roaring up and out of my windpipe (bronchi). I most likely contracted a grand case of the "flu", complicated by bronchitis.


So, how can I be CERTAIN I do not have pneumonia? Well, I can't be certain without a chest X-ray and a WBC (White Blood Count). But, I have NOT spiked a high fever (102 or above), have NOT developed severe chest pain or serious shortness of breath, have NOT had a sudden case of "chills", and I've NOT become delirious (well, except for that sudden lapse in manners when posting a reply to TippyTopple!)...all classic signs of bacterial pneumonia if I DID have any of the previous mentioned symptoms. That's not to say I have not developed VIRAL PNEUMONIA (used to be called "walking pneumonia") OR that I cannot develop BACTERIAL PNEUMONIA...I'm just not willing to waste a trip to the ER at this point because I'll probably be told I have the "flu".


Since I am on Tysabri (with potential lowered immune response), I have had email contact with Dr. She Who Will Not Be Named...she concurs with my assessment (I LOVE that word: concur. It feels so...doctor-ish). I have an old Albuterol inhaler to try and open up my airways, I've got Vicodin (which is synthetic codeine/hydrocodone...which is what is in cough medicine...codeine...to suppress cough), and if I spike a high temp, I'll head to an ER for antibiotics (which, BTW, overuse of antibiotics IS one of the main reasons we now how antibiotic resistant infections, such as MRSA!).


"But, how will you get to an ER, BRAINCHEESE? You're roads are still socked in."


Yesterday...Christmas Day...when I was feeling quite lower than hammered CaCa...I received a call from my coworkers. They were coming to my "hood" in an All Wheel Drive Vehicle and bringing supplies. They bounded into my home (walking part of the way) with Chinese food (think "Christmas Story" here and laugh out loud with the "Tis the sees run to be jaw ry, fa ra ra ra ra, ra ra ra ra"). They will *retrieve* me if I need emergency care...I WORK for a branch of emergency services after all. Somehow, I had FORGOTTEN this connection in my total despair and cabin fever/real fever.


SO, thank you, TippyTopple (if that really IS your name! LOL) for your generous offer of assistance to my "hood"...my little neck of the snowbound neighborhood appears to be managing (Ms. B actually sent her granddaughter across the icy, snow-covered hill with a SWEET POTATO PIE for me yesterday!) at the moment...we still *hope* the City of Seattle will NOT continue to forget us and maybe, just maybe, bring a snow plow or sanding truck down our streets ONCE. Or, perhaps Mother Nature will recognize we have paid our *dues* over here and send some above freezing weather to melt this crystal-white blanket covering us.


At the moment, I have more FAITH in Mother Nature than my Emerald City management...

Wednesday, December 24, 2008

I Have Hope In Canada...

Still running a fever...still trying to cough out a lung...still unable to breathe via the dam block of snot clogging my sinuses and nostrils...still snowed in up to my knees...still having a worsening of MS symptoms BECAUSE of my fever.

That happiness aside, I just read this morning over on Shauna's blog , that I have obtained *honourary* Canadian citizenship!!! I am soooo excited about this prospect...it has given me reason to try to fight whatever is gripping my chest/lungs/head rather than hoping I die in my sleep. And for Shauna, I post the following picture...because I want you to know, I do NOT take my *honourary* Canadian citizenship lightly. I mean, I WAS practically a Canuck before this:
Note even the ANNE MURRAY selection of music! And that's pure, Nova Scotian right there...I'm pretty sure if I own or have listened to ANNE MURRAY at any point in my life, this qualifies me for Canadian *honourary* citizenship.

Real fever mixed with cabin fever has me looking like this:
I have been limping around the hut, talking only through the use of my left index finger, bobbing it up and down, and saying things like, "Red Rum", and "Talk to Tony", to the Princess O' Darkness. She is neither amused nor impressed. In fact, she has decided it is important for HER to take up a major portion of my couch and ignore me completely...derned P.O.D:






Tuesday, December 23, 2008

S.O.S....Send Food/Water/Medicine Please!...

Yeah, I know I haven't posted anything in a week...thanks for all of the emails, well wishes, AND the notes wondering, "Where the *heck* is BRAINCHEESE?!?"

I'm here...it's just been an incredibly BAD week with MS issues, over a foot of snow in my city and being locked out of any type of transportation due to inadequate bus service/extremely POOR emergency weather planning by local officials (yes, I DO mean you Seattle mayor, Greg Nichols, AND County Executive, Ron Sims!!!)...it's as if we are living a SNOW WHITE KATRINA situation over here in my neighborhood with absolutely NO BUS/TAXI/TRAIN/SNOW PLOW services whatsoever for the past 6 days. I'm starting to stare at my own flesh, wondering how a slab of my forearm might taste roasted over open fire. There is currently no way even 911 could get to my house if I needed them...thank goodness I currently DON'T need them! But that could change...

I've developed the Mother of all Bronchitis...running fever, chest congestion, cough, malaise, headache, stopped up sinuses, and an irritable attitude that makes Vice President, Dickey Chaney, look like a cuddly kitten. Again, GOOD THING I DON'T NEED 911 SERVICES AT THE MOMENT!!!

I did NOT do the IV Soly treatments prescribed by Dr. SWWNBN...good thing, too. I couldn't have gotten to the hospital the past 6 days to DO them! I tried some new medication instead, only to discover I was developing some kind of funky rash on my legs...so, of course, I stopped the med...typical. My feet remain on "fire", but I don't care so much because I'm mostly lying down. The *best* treatment I have found thus far for paresthesias in the feet is something I'd like to call, "Ignorant Near Frostbite"...yes, that's right. I stood out in sub-freezing weather/blowing snow, trying to get to work on Thursday, while waiting for a bus/walking nearly 1 1/2 miles from bus stop to bus stop, for almost 2 hours, only to discover MY area of the city had been forgotten by city/county planners because "we" (myself and hundreds of other Seattle residents who live in what is called "the hood") don't need access to our jobs, groceries, medications, frickin' 911 service because our per capita income in this area is FAR less than other *important* areas of the city! But I'm NOT bitter...no sir-eee.

Anywhozit...I'd best get out of bed now (typing on laptop, which is heaven) before I begin to develop bed sores (or worse yet, WET my bed!)...sorry I'm just not in the mood to find an appropriate picture for this post. Frankly, I'm surprised my Internet service hasn't gone down (still fortunately have electricity here).

I'll leave you with an article I discovered today, which pi$$ed me off even more than my current weather/cabin fever - REAL fever issues. It's from a site called "VA Watchdog.org". Yes, I plagiarized it...SUE ME!:

Was nurse with MS fit to work? VA said no


By William R. Levesque
Times Staff Writer



ST. PETERSBURG — Patricia A. Price's supervisors said they watched in sadness as multiple sclerosis eroded the registered nurse's job performance.

Lapses in memory. Mistakes. Confusion.

Price disputed that, insisting she was just fatigued and could still do her job at the Bay Pines VA Medical Center.

When Bay Pines disagreed, Price filed a complaint with the U.S. Equal Employment Opportunity Commission. Two weeks ago, a judge ruled against her claim of discrimination.

"I really can't believe they're doing this to me," said Price, 50.

What came to pass during 2007 in one of the nation's busiest veterans hospitals is the complicated story of one nurse's fight to save her career and the hospital that says her disease endangered patient safety.

The case is documented in the dry language of employment law and the Byzantine rules of the Department of Veterans Affairs.

But like any workplace dispute, the truth is never as straightforward as a lawyer's brief. It's wrapped in emotion. It can emerge without obvious villains.

And often, it pleases no one.

• • •

The VA hired Price to work at Bay Pines in January 2005 after she spent over 13 years in the Army. She worked in the Congestive Heart Failure Clinic.

She loved the work. And the enthusiasm showed in her performance evaluations. Her supervisors praised her. On Jan. 31, 2007, her boss rated her "high satisfactory," the second-highest rating on an evaluation scale.

Within months, Price became concerned by persistent fatigue and weight loss. She visited a doctor. The news stunned her.

She suffered from MS.

MS is a neurological disease whose symptoms vary greatly. It's incurable, though those who suffer from it typically live normal life spans.

It can cause fatigue, muscle spasms, speech problems, difficulty with balance, pain and restrictions in movement.

And in up to 60 percent of MS cases, cognitive problems of varying degree occur, from memory issues to the processing speed of the brain.

Legions of Americans function normally with MS; many of their co-workers are unaware they suffer from the disease. Others aren't so lucky.

Price said she told her supervisors at Bay Pines that she had MS.

"Bay Pines was okay about it," Price said. "It was as if I were telling friends. They offered support."

In the spring of 2007, Price said that changed.

Price didn't want to "float," or move around the hospital, treating patients. A doctor had told her to avoid infection, which might worsen her MS. Moving around the hospital would expose her to more germs than necessary, she said.

"Ms. Price needs reasonable accommodation to prevent exacerbation of her MS," said a doctor's note Price gave to her boss.

Federal law requires employers to make accommodations to eligible workers unless doing so puts others at risk or poses an undue economic burden.

Bay Pines rejected an accommodation for Price.

A nurse supervisor wrote in a memo that Price's request that she not float "is not acceptable to me as all my staff float as needed to assure timely and safe patient care."

The supervisor said in her opinion Price did not meet the definition of a "qualified individual with a disability" because her problems were "cognitive in nature" and make her unable to work as an RN.

A note in Price's personnel file concluded that a transfer to another nursing position wasn't possible "due to the severity" of Price's MS.

Price was furious. She acknowledged that her MS caused her depression and mental lapses at its worst. But MS is typified by periods of remission when the disease's symptoms lessen.

And she insisted that her MS didn't cause her cognitive problems. "I was fully capable of performing my duties," she said.

Her medical records in this same time frame show that Price complained to her doctors about fatigue and difficulty concentrating. A July 2007 physician's note said, Price "is having difficulty accepting her medical condition and its limitations."

Price, however, said she was under stress from supervisors concerned about her MS, something that worsened her concentration.

Price's supervisors, meantime, told her she had made several mistakes in the job and they were concerned. They ultimately pulled her from having any contact with patients.

Once an accommodation was refused, Price filed a complaint with the Equal Employment Opportunity Commission.

That, said Price, angered the VA and resulted in things really falling apart with her job.

Not long afterward, Bay Pines insisted that Price be given a "fit-for-duty" physical. A neurologist examined her and said she could not perform all the essential duties of a nurse.

"I was just wanting them to leave me alone," Price said. "I wanted them to let me do my job."

Price said she had investigated a disability retirement and filled out paperwork for one. But she said she stopped the process, deciding she would fight to save her job.

For a time, Bay Pines allowed her to work at jobs that would accommodate her condition.

But Bay Pines, she said, finally forced her to accept the disability retirement in early November 2007. It provides her up to $20,000 annually, or 40 percent of her full salary.

Price, a single mother of three whose son is in the Army and was recently sent to Iraq, said she can barely subsist on the money.

John Pickens, a regional spokesman for the VA, denied that the agency forced her to retire and said others at Bay Pines with less-severe MS work at the hospital.

"We basically watched this disease take over her," Lawrence Diehl, chief nurse of primary care at Bay Pines, testified as part of Price's discrimination case. "And it's been very tough to watch. ... Nurses can't be cognitively impaired and take care of patients."

Diehl didn't think Price had come to terms with her MS.

"I don't believe she fully accepted her diagnosis," he said. "And I think she's had a real tough time. We're just hoping for the best for her."

Price said her bosses are exaggerating her problems and just tried to get rid of someone making waves. She still hoped to work as an RN.

"They have no compassion," Price said. "They don't care. I know I can't get my job back. But I don't want them to do this to somebody else. This isn't fair."



William R. Levesque can be reached at (813) 269-5306 or levesque@sptimes.com.

Tuesday, December 16, 2008

Sitting This One Out...

I've developed paresthesias in my feet and legs, which came on gradually last week about the same time I developed a return of aching pain in my left shoulder/neck/arm. I have been walking around on the heels and sides of my feet in an attempt to keep from putting pressure on the ball of my sole because the pain/burning sensation has become so acute...I feel as if I am walking on hot coals. I cannot sleep because I can't stand the feel of sheets touching my feet, and/or I wake up after only a few hours sleep due to pain radiating down my neck and arm...because of this, I am also experiencing fatigue beyond words.

I saw Dr. She Who Will Not Be Named today in an "urgent" appointment. She is concerned the Tysabri is not "holding" me due to continued development of new symptoms over the past 3 - 4 months. She ordered an "urgent" MRI of my spine today and a 5 day course of IV Solumedrol...again. She added new medications and upped doses of old ones. I left her office confused and disoriented, on my way to a two hour roll in the "tube" (MRI). I missed going to work today. Now, I am uncertain I will consent to more IV Soly, even though I blankly shook my head, "yes", in the office today. I had too much time to *think* while laying motionless and in pain within the claustrophobic tube.


Dr. SWWNBN is *checking* to find out IF I got Rituxan for certain in the Rituxan Study I participated in 2005. She wants to enroll me in a Alemtuzumab/Campath Study instead of the Tysabri, but I won't be eligible for the Alemtuzumab Study if I DID get Rituxan. I am confused, sad, and undecided what, if ANY, course of treatment I wish to pursue at this time.


I'm sitting this one out with my feet up...carry on...I just need to stare at the water for the time being and *feel* all of this.

Never Content...


Colder than a well digger's arse outside, yet my feet feel like they are on fire...what gives?!?

Sunday, December 14, 2008

When Hell Freezes Over...And It HAS!...






That's right...It's bitter cold in Seattle. The once Emerald City is now blanketed with snow and ice and it is expected to remain frigid cold for another week.


I can't WAIT to return to work tomorrow and join in the driving Ice Capades!

Nothing "Courageous" About MS In My Life...

OK, pardon me for a moment (although there really ISN'T an excuse for my bad behavior the vast majority of the time!) while I share yet another (sigh) rant.

I'm not one who regularly reads obituaries, but occasionally my GoogleAlerts will include one in the notices because the *obit* will contain those two, lovely words, "Multiple AND Sclerosis". I rarely EVER click on these to read them for two reasons: 1. I hear about/read/deal with/discover DEATH far too much in my work life and it's not a "fun" topic, and 2. People DO die from MS/complications from MS and I just DON'T want to hear about it most days.

The problem with GoogleAlerts is, the *alert* always spews the first few lines of whatever it is trying to *alert* me to that has the words "Multiple AND Sclerosis" in it, and this is usually found in the first few lines of the obituary notices, too. So here's my rant:

If I read one more obituary (about MS) that says someone finally gave up the ghost after their COURAGEOUS BATTLE WITH MS, I'm going to run naked and screaming down the street (almost worth posting an *obit* for THAT horrid scene, eh?)!!!! WTF?!?!?

Maybe I'm missing the boat here on this one (it certainly has happened before), but I have found NOTHING *COURAGEOUS* about living with MS in my personal life. I have discovered nothing *COURAGEOUS* about myself that wasn't already present pre-MS.


MS has, at times, brought me to my knees (then made it impossible to literally get up, beauch!), cowering like a child and whimpering like a sick puppy. It has caused me to learn and even make up more curse words (thanks to BLINDBEARD, etc!) than I EVER uttered pre-MS. It has brought more fear to the surface of my consciousness than I ever knew existed in my tired, little pea brain. It has caused me to quietly contemplate quality versus quantity of Life issues. MS has certainly NOT brought out the *best* in me and I'm pretty sure I won't be winning any badge of *COURAGE* any time soon related to my dealings with Multiple Sclerosis.

I have NOT "waged a COURAGEOUS battle with or against my MS". I have simply tried to live my life WITH MS, always taunting me in the background (and sometimes with the audacity to taunt me in the FOREGROUND!). My life with MS is no different than anyone else, who attempts to live their life with the multitude of challenges *Life* brings us. There has been nothing *honorable* or even remotely requiring COURAGE in my life with MS, other than to get up each day and go about my business...just like any other human being walking on the face of this earth. Certainly, I will admit perhaps I have faced a few more *unique* challenges while living my life with MS, but none so outstandingly different than ANYONE living with a chronic, debilitating disease...and there ARE many other diseases out there that fit that description.


I decided I had best begin writing my OWN obituary, just in case. And I thought MY obituary should include words like "a$$ hat", "beauch", and "whiner" in it...staying true to my sense of honest self-disclosure! I found this charming teen site on the Internet, Teens(at)Random , which allows one to generate their own obituary just by providing a few random words in a short questionnaire. Beware! Those random words you provide "could" be a tell all...hehe. Here's a copy of mine:


World-renowned Whiner BRAINCHEESE died today in a hospital in Seattle. Doctors are still unsure of what exactly caused the death, but believe it was due to complications after BRAINCHEESE beauched too fast and suffered pains in her brain. She was five hundred years old.


BRAINCHEESE was a weak person, who enjoyed everything about life. She was known for her passion for Mountain Dew, which she often ate one hundred times a day. She loved to share Mountain Dew with everyone, and would even offer Mountain Dew to strangers. BRAINCHEESE also enjoyed traveling, especially to historical landmarks, and loved meeting people around the world. On her trip to Hell she even met the president (and yes, she offered him Mountain Dew). After meeting him, BRAINCHEESE said the President was mentally challenged.


BRAINCHEESE is survived by her partner The Virgin Mary, their three children, and their pet lemur named "Ass hat".

Saturday, December 13, 2008

The Secret Lives Of Bloggers (And ALL Human Beings)...

I receive many private emails about the things I write here on CHEESE. The majority of those emails are comments readers choose not to make public in the *comment section* of this blog or questions they wish to ask me privately. Some of the emails include details about the reader's life that are sensitive in nature, yet there is a desire for me to *know* them on a deeper level...to have access into their world that, for a reader's personal reasons, they do not wish to share among the masses. Some of the emails I receive are filled with anger or dislike about things I write...these are usually sent "anonymously" to me. And still, other emails I receive are full of personal questions about ME...answers I do not readily disclose in this blog for various reasons.

When I first started writing BRAINCHEESE, now almost 3 years ago, I spent a great deal of time mulling over my rationale for attempting to take on such an *unusual* task...public disclosure about my life while living with Multiple Sclerosis. I carefully weighed out the personal benefits I might receive as well as the hopeful benefits of sharing my experience with such a large, public audience. My goal has always been (and will continue to be) to provide a public forum for those dealing with Multiple Sclerosis in which there is education, common bonding, and a sense of community provided in what I have tried to mask behind humor and honest self-discovery. So often, those of us with MS, have found or FIND ourselves feeling alone and frightened with this unforgiving disease...I have tried to systematically tear down small portions of that barrier via common themes and agendas.


When I write ideas on CHEESE, I do so with the same approach I am trained to take when dealing with psychiatric patients: Self-disclosure should only be used IF it is helpful in providing example through experience to an individual and NOT done as a means of self-promotion or narcissistic gain. If you've ever been to a therapist, you've probably been told the standard line in response to personal questions asked of the therapist..."We're not here to talk about me (therapist), we're here to talk about you." This is because the power of projection is so important in the therapeutic alliance. By limiting self-disclosure from the therapist, the client is allowed to assume whatever attributes/roles the client chooses from their own subconscious and *project* these images onto the therapist. This *projection* provides a road map of sorts into the thinking processes and behaviors of the client that might otherwise not surface if clouded by the realities of the therapist...and the therapist is then given access into the hidden or unconscious life of the client to hopefully gently guide the client on a path of clearer understanding.


OK, so psychobabble aside...I write in the style I do here on CHEESE so that YOU, the reader, might find YOURSELF in the postings and pages. And, occasionally I write as a simple form of outlet for myself, always trying to be mindful of the impact my words might have upon the reader. I want to believe this approach is far more useful to us BOTH than simple diarrhea of the mouth. LOL


I always smile when I receive an email from a reader, who poses many personal questions of me or writes their email with an obvious hidden agenda. I have even received emails from readers "challenging" me with ideas such as a disbelief I am even *real* or that I do not have Multiple Sclerosis...these emails fascinate me on many levels. I recently received an email from someone I actually have had contact with OUTSIDE of the Internet community who discovered my blog by pure accident, asking me why I am not more "authentic" about the many faceted aspects of my personal life? "Why don't you ever talk about such and such or THIS part of your life in your blog? Don't you think those topics would ALSO be of benefit to your readers?" This person has known me in another arena for a few years and has, therefore, had privilege to the *other* parts of who I am outside of the Internet community. The question arose that perhaps by NOT "going there" on other specific topics, I am somehow NOT being honest or real with my readers?


What I will say in response to this question/statement is, NONE of us ever really know another. We may *think* we do, but we do not. Every human being walking and breathing on the face of this planet has unexpressed desires, agendas, motives, and facets of their life that another person can and will never know or understand. Human beings are both quite complex and also very simple and we often attempt to hide behind BOTH of these truths...our complexities and our simplicities...in our efforts to grow and to survive. When others claim to "know" me, I can only say with great certainty, that claim is FALSE...even among those I spend a great deal of time with in my personal life. There is absolutely NO WAY for me to verbalize or demonstrate for another the complexity of my life experiences (or yours) via a blog, direct communication, or behavioral demonstration. And yet, the SIMPLICITIES of my life are cause for celebration in a general consensus among us...my most basic feelings are something EVERY HUMAN BEING SHARES AT ONE TIME OR ANOTHER IN THEIR LIFE. And these are the ideas I attempt to keep as clear as possible in this blog.


My friend's email DID spark an unusual idea (like I don't already have THOSE most of the time?!?) and I decided to do a bit of *beta testing* (I just like using the words *beta testing*, but I have no idea what that really means) about my modus operandi behind WRITING this blog and also my theories of projection. What I have devised is a little *test* for you, my preciouses! That's right, this is ONLY a test...if this were an actual BRAINCHEESE emergency, you'd be instructed to blahty, blah, blah blah. LOL


So, here is how the "What Do You Think You Know About BRAINCHEESE?" test goes...I have constructed a serious of questions in sections about my private life (or the secret life of a blogger). Each answer is assigned a letter or symbol and each question correctly answered will construct a sentence with these letters/symbols...a VERY IMPORTANT SENTENCE, that I will want you to RESPOND TO "if" you can answer all of the questions correctly. Once you have completed the questionnaire AND have constructed the final sentence, I would ask you to provide comment or personal email with your RESPONSE or THOUGHTS about the VERY IMPORTANT SENTENCE. Oh, and by the way, I will NOT be providing the correct answers to the questions here on CHEESE.


Dear Lord, I have way tooooo much time on my hands! Here goes:


Question #1:


B. I drink alcohol.

D. I smoke cigarettes.

F. I have sex with strangers.

M. I abuse illegal drugs.

N. I have a gambling addiction.


Question #2:


A. My favorite color is black.

O. My favorite color is lavender.

I. My favorite color is green.

E. My favorite color is blue.

U. My favorite color is yellow.


Question #3:


G. I am right-handed.

Y. I am left-handed.

T. I am ambidextrous.


Question #4:


P. I vote along Republican Party lines.

O. I am not a registered voter.

L. I vote along Libertarian Party lines.

S. I vote along Green Party lines.

T. I vote along Democratic Party lines.


Question #5:


U. I identify as a lesbian.

R. I identify as transgendered.

V. I identify as bisexual.

W. I identify as heterosexual.

A. I identify as asexual.


Question #6:


J. I have a two year degree in nursing.

K. I have a diploma in nursing.

L. I have a four year degree in nursing.

M. I have a master's degree in nursing.

N. I am an adult nurse practitioner.


Question #7:


C. I was raised in the Methodist Church ideology.

E. I was raised in the Baptist Church ideology.

N. I was raised in the Church Of Christ ideology.

F. I was raised in the Jewish faith ideology.

M. I was raised in the Lutheran Church ideology.


Question #8:


T. My cultural/ethnic ancestry originated primarily in Japan, Ireland, and Germany.

G. My cultural/ethnic ancestry originated primarily in Britain, Native America, and Russia.

O. My cultural/ethnic ancestry originated primarily in Ireland, Germany, and Native America.

I. My cultural/ethnic ancestry originated primarily in Germany, Norway, and Italy.

". My cultural/ethnic ancestry originated primarily in Greece, Ireland, and Poland.


Question #9:


C. I currently live in an apartment.

D. I currently live in a condo.

R. I currently live in a house.

W. I currently live in a duplex.

O. I currently live in a commune.


Question #10:


T. My primary financial charitable donations go to the United Way.

W. My primary financial charitable donations go to Habitat For Humanity.

B. My primary financial charitable donations go to The Sierra Club.

H. My primary financial charitable donations go to NARAL.

M. My primary financial charitable donations go to The MS Society.


Question #11:


P. I have been diagnosed and continue treatment for MS, Diabetes, Depression, and Irritable Bowel Syndrome.

E. I have been diagnosed and continue treatment for MS, GERD, Hypertension, and Depression.

R. I have been diagnosed and continue treatment for MS, Bipolar Disorder, Hypertension, and Osteoarthritis.

A. I have been diagnosed and continue treatment for MS, Obsessive/Compulsive Disorder, GERD, and Lupus.

S. I have been diagnosed and continue treatment for MS, Renal Insufficiency, Irritable Bowel Syndrome, and Heart Murmur.


Question #12:


. I have had coronary bypass surgery.

! I have had gastroplasty surgery.

? I have had electroconvulsive therapy.

... I have had bowel reconstruction surgery.

" I have had cosmetic facial surgery.





Weather-Related Mini Vacation Closure...

Due to circumstances outside of my control (I mean, I'm *good*, but even I can't control the weather!), I remain at home and NOT sipping hot chocolate by a warm, wood burning stove on the outskirts of one of our Islands here in Puget Sound. And I am bummed. I have been *bummed* all day. So, in the spirit of *bummed*, I have done NOTHING, but bum around. Well, that and waiting for the high wind gusts to knock out my power as usual.

So far, the electricity has stayed on all afternoon and evening and it appears the wind gusts are dying down. Our local 520 floating bridge (which "natives" often refer to as the "520 car wash" when the winds pick up) managed to stay open all day, even with a few wind gusts over 50mph (It is mandated to close for traffic if wind speeds reach a sustained 50mph or above for 15 consecutive minutes). I have cranked up my heat in the hut to a toasty 72 degrees...waiting...I have electric heat, so it is always best to *preheat* if there's a chance the power is going to go down.

I have also, for some strange reason, not felt "myself" (minds out of the gutter here, I'm NOT talking literally!) today. Periodic episodes of dizzy have been plaguing my existence throughout the afternoon and evening. Of all the transient MS symptoms I have, DIZZY is my worst enemy. Because with dizzy, I often feel twinges of nausea...and believe me, if there is ONE thing I will sell a kidney in an effort to avoid, that is up-chucking nausea. I can manage pain, paralysis, numbness, and all other MS symptoms with a tiny bit of grace...but give me dizzy/nausea, and I whimper like a baby and cry like a school girl. I honestly humbly bow to those on prolonged cancer treatments who deal with nausea daily for weeks or months at a time!

I've also begun to notice a return of some minor/lesser MS symptoms that are no more than an annoyance, but coupled together, DO make me irritable (like I NEED an excuse to be irritable?!?). My toes and the bottom balls of my feet have felt fire-ish and somewhat painful as well as what feels like the beginnings of muscle cramps in my calves. I earlier had those annoying facial tremors in my chin and also have an ache in the left side of my neck, which travels down my left shoulder and into my arm. It's that "nerve-y anxious discomfort pain"...the kind that is hard to describe, but so easily identified from past experience with it. I suppose with all of these minor body inconveniences, it has probably been for the best I did NOT travel away from the confines of the hut for now.

And on a complete loosely related note, I received word of yet ANOTHER MS blogger new to the blogging world at Life In The Slow Lane ...added to the stack of blogger links over there on the left side bar. It goes without saying, welcome, Nickie! But I'm so sorry about the ride...

I finally just had to give up the ghost and mark ALL of my GoogleReader blog links as *read*. I'm sorry. I've not been avoiding you or your blogs. I just got behind about 75 blog posts and felt too overwhelmed to catch up. With one click of a button, I am no longer haunted by unread blogger posts and can pretend all is well in my world. I WILL try to get caught up on reading all y'all's blogs again soon...I think this is just part of my *bummed* persona that has been brewing all week.

Time for me to stick my fiery toes under my sheets and get some shut eye. We're expecting snow tomorrow and I want to be well rested for THAT drama! Snow in Seattle is *almost* as big news as the recent snow in the south...almost...

Friday, December 12, 2008

Weather-Related Blog Closure...

All right...Uncle! That's a lie. I'm really shutting down CHEESE for 36 hours due to a much needed break from Society and all things stress-related. I'm going to spend some time on one of the local Islands this weekend...where the deer and the antelope play. OK, no antelope, but there ARE plenty of deer, coyotes, owls, and FEW people!

And for the record, there IS snow predicted for the Puget Sound region (Seattle area for the rest of you folks unfamiliar with Northwest lingo) beginning Friday afternoon/evening. I will hopefully be on a ferry long before road conditions take a turn for the worst (which is that time of day STOOPID people who have no experience driving in even mist should stay home!). I will be spending my evening bundled up in the glow of a wood burning stove, eating delicious food, and leaving behind Tysabri billing issues/work issues/Holiday stress issues/social issues/issue-type issues.

And, if I'm down right lucky...I mean UNFORTUNATE!...I COULD get snowed in on the Island, making it impossible for me to return home to finish cleaning my house or even go to work on Monday. Doubt I'll be *stressing* over that potential problem much at all...hehe...

Be back soon...hopefully rested, relaxed, and revived...

Wednesday, December 10, 2008

Tysabri, Tysabri, TYSABRI!!!...

If you type the word, "Tysabri" enough times in a blog title or body of a post, hundreds of wayward explorers will come bounding to your blog in search of the meaning behind WHY you typed the word "TYSABRI". And, unfortunately, there ARE those of us in the MS world of bloggers that seem to attract attention simply by opening our big, fat mouths. Sigh. BRAINCHEESE appears to have become one of those *big, fat mouths*. (I personally think it is a genetic defect/gift.) LOL

**SIDE BAR** Whenever I blog about Tysabri or my tales with this drug, CHEESE is bombarded with anywhere from 200 to 500 *hits* per day. Some of these *hits* are the usual drive by crowd...some are new MSers searching for Tysabri information...some are pharmaceutical companies...many are from an Elan Investment site checking on what is being said about the company's MAIN stock investment currently...and a rare few are from higher learning institutes/research companies doing, well, RESEARCH! **END SIDE BAR**


As most of you *regulars* know, I met with the CEO, the Financial-Somebody-Important (not going to say CFO because, frankly I'm not sure WHAT her title is!), the Head of Pharmacy Services (somehow I was lead to believe I had already MET this person in September at my FIRST big meeting...turns out there may be a few "posers" at Club Med), the Administrative Director of Club Med's Neurology Department, and briefly with the Clinical Nurse Manager of the latter department (she got out while the "gittin' was good", claiming another scheduled meeting trumped this one!).


Anywhozit, for the sake of potential lawsuit for libel (never mind things I say in person, aka, potential *slander*), I will simply provide a play by play perspective of MY observations during this meeting...and, since I'm aware the CEO of Club Med (and perhaps a gaggle of legal team representatives?!?) has been reading CHEESE, I would NOT want to say anything here that could lend itself to misinterpretation (another big *shout out* to Mr. CEO...although, after our meeting, you may have lost interest in what I say in this blog. Sigh.).


I, as always, arrived for our meeting 15 minutes early. I'm obsessive/compulsive that way. When something is important to me, I tend to want to have time BEFORE hand to collect my thoughts...but mainly, I just hate being late. It's bad form.


**SIDE BAR** When I was 16 and first driving, I used to drive 7 miles to my Grandmother's home and escort her to church. Gram ALWAYS liked to be early for the service because this was a time she sat "pre-sermon" and chatted with her friends...usually 1/2 hour before the service started. One Sunday, I happened out of bed a bit late, and arrived at Gram's house only 10 minutes before the service started. I searched her home, but she was MIA. I decided to go on to the church (only 2 blocks away as the crow flies) and hoped she might already be there...sort of. My Gram was a woman of few words, but when she spoke, it was important to listen. And I KNEW she would quite possibly have *words* for me due to my tardiness. I located Gram in the church surrounded by her friends and cautiously approached. She saw me out of the corner of her eye, but did not turn to look at me. Then, suddenly and without fanfare or warning, she spoke, looking straight ahead: "The good Lord only asks you to be on time once a week." My heart fell into my shoes because she was speaking to me without acknowledging my presence. Since that time, I am rarely if EVER late for any engagement of importance...especially things when I have someone else waiting for me to arrive. **END SIDE BAR**


The conference room I was escorted to by the Clinical Nurse Manager was quite warm...I'm a perimenopausal woman and confined, warm spaces do NOT bring out the best in me. I wondered if the heat in the room was some sort of psychological *tactic* to "break" me...I've since dropped that paranoid notion because this would have required some preplanning intelligence (do NOT read into that sentence, my preciouses...LMAO). In the room and already seated was Mr. Pharmacy (see above drawing rendition for seating charts). We briefly introduced ourselves...he seemed to be a *nice* man...and we began chatting. Mr. Pharmacy, at some point in our pre-meeting mode, asked me what I "do" for a living.


**SIDE BAR** CHEESE readers ALL know what I do for a living...it's not a "pretty" job. I do legal/clinical evaluations for psychiatric commitments. More often than not, if someone asks what I "do" for a living, I simply tell them I push a lot of papers for the County. They usually leave me alone with this response. But there IS that special occasion when I take great DELIGHT in informing others what I do for a living. It can be a PROFOUND and UNNERVING statement to say, "I am an officer of Blankety Blank Superior Court and I do legal/clinical evaluations for psychiatric commitments". It can DEFINITELY be a conversation *turner*. LOL **END SIDE BAR**


I advised Mr. Pharmacy of my occupation, adding, "So watch yourself." He seemed to find this slightly humorous, then began chatting about his adult child, their college education, and where they are currently working (no brainer to figure out his child works in the psychiatric field, eh?!?). I immediately liked him...and continued to enjoy his presence throughout the remainder of my time there...most likely because he NEVER spoke again once the meeting started.


Slowly, players three and four arrived just before 11:30AM...Clinic Administrative Director and Financial-Somebody-Important. There was much shifting in seats as I calmly pulled the only bottle of water within a city block radius out of my bag to quench my thirst (perhaps they thought I was PACKING heat instead of just being tortured by SITTING in it?!?)...I brought it with me...I didn't offer to share. I'm not sure if they were impressed with my pre-planning skills, but I imagined little voices in their heads saying, "Dayum it! I wish I'd thought of that"...the room grew warmer by the minute.


I was told we were waiting for Mr. CEO...he was allegedly on his way. Someone called his personal secretary to check his status. Yes, he would be here in just a moment. Time ticked by...about 15 minutes to be exact. I sat quietly, only *chit chatting* when appropriate about random things like the FRICKIN' heat in the room. I wondered if Mr. CEO's tardiness would have occurred had he spend his formative years with Gram? I had lots of questions rolling around in my pea brain...sweat began to bead on my upper lip. Not anxiety sweat, HEAT sweat. It seemed quite odd to put an MS heat intolerant patient in a simulated boiler room, but I didn't voice a complaint...I just sipped my water under the watchful and jealous eyes of players 1 - 4.


**SIDE BAR** In quite crude terminology, multi-players assembled on one side of the table or *team* facing off with a lone individual, is called a "corporate gang bang". **END SIDE BAR**


Finally, Mr. CEO made his entrance into the room and all eyes lit up...albeit glazed over eyes, most likely affected by the room temperature. Mr. CEO introduced himself to me and immediately offered an apology for "dropping the ball on this one"...in fact, he repeated this apology several times initially and throughout the course of our now 45 minute meeting. I don't recall him apologizing for being tardy, but he DID tell us a doctor had stopped him in the hallway to talk about something, which was apparently far more important than timeliness.


I thanked him for his apology, plain and simple..."thank you for the apology". I suddenly became an overheated, perimenopausal woman of few words. I, after all, had little to say that was not already voiced via email/letter. It was Club Med's turn to do the talking. I began hearing my own, tiny little voice in my head, sounding much like Ricky Ricardo (Lucille Ball's husband) saying, "Loooo see. You got some s'plainin' to do".


As expected (yes, I once worked in nursing management and have taken a few *management* courses of my own...there ARE expectations of behavior in this sort of meeting), Mr. CEO asked me to *recap* my concerns for the group...just to be sure everyone understood the issues.


**SIDE BAR** Recapping/encouraged problem identification is a technique used to allow the "complaint-or" their first hand at talking. A show of graciousness to offer the speaking floor immediately to the person with the complaint. However, *recapping* is ALSO a technique used to defuse tense situations as well as provide the "complaint-ee" (identified alleged wrongful party) opportunity to formulate a plan of response (defense) versus possibly being blind-sided by unknowns. *Recapping* also offers the listening party opportunity to interrupt, thus side tracking the speaker...but only the corrupt would use THIS as a game plan. Hehe... **END SIDE BAR**


So...I *recapped*. For the pure entertainment of it all. I flipped through my emails, EOB (explanation of benefits - insurance), Lisa's wonderful Excel worksheet demonstrating Club Med is THE highest billed infusion site in a survey of 26 nation-wide sites, touched upon the HIPAA violation(s) that have occurred at Club Med which I am "privvy" to, etc. There were interruptions from the crowd...questions posed...oddly, what appeared to be a few fingers pointed among the Club Med attendees at one department or another. There was much talk and shifting of responsibility regarding the *letter* Club Med had previously promised to send out to ALL of their current Tysabri patients, detailing clear and concise billing. Essentially, LITTLE was established or agreed upon, except we could ALL say, for the record, "we" had met. Case closed...or at least I'm sure that's what the "hope" is/was after our meeting.


I made a point of advising Club Med that I knew I had no influence to change their billing practices...but I felt it WAS their responsibility to provide *informed consent of billing* to their patients. And to offer their patients ALTERNATIVES (i.e., OTHER more cost affordable infusion sites in the area) as options in receiving their Tysabri. This seemed to cause a stir amongst the tribe. There was talk about what "informed consent" REALLY consisted of and WAS it Club Med's responsibility to advise patients of this information (The MS Society function was actually brought up in this portion of the conversation...not by ME, of course...but as a *resource* for MS patients to obtain this information. I believe I DID honestly laugh out loud at this notion.)? I assured them it WAS Club Med's responsibility, which I insisted upon, whether this information came directly from a Club Med physician, the clinic, or the hospital administration. This was NOT something I could or ever WOULD easily be dissuaded from.


The conversation quickly degenerated again to WHO among Club Med would accept this responsibility? An unknown Social Worker from the clinic was offered up in sacrifice for informing approximately 80 Tysabri patients of this information. This hardly seemed fair, given USW (unknown Social Worker) only WORKS in the clinic 20 hours a week...that's a lot of Tysabri patients to deal with. Cunning cleverness over took me...I offered to ASSIST with this process...free of charge...volunteer my time...support the cause...work toward solution.


True, this WAS part of my motive. But only a small part. I offered my personal time to assist, knowing this would be difficult for Club Med to decline, and would ALSO provide me opportunity to remain WATCHFUL the process really DOES/DID occur. (Yes, Mr. CEO, if you are reading this...classic Management Conflict Resolution 101 Course...become available to assist, thereby providing oversight into the process. "Be the change you wish to see in the world"...WAIT! That's a Mahatma Gandhi quote. I'm soooooo transparent. LOL) I also offered Financial-Somebody-Important the SAME deal of free time/assistance in Club Med's HIPAA *retraining* process of staff...as a patient advocate and example...as a community educator to *bring home* the importance of privacy when dealing with patient's personal health information...as someone who could quickly demonstrate to employees how simple it is for me (or anyone ELSE, for that matter) to locate a person's demographic and past historical information LEGALLY on the Internet, all with only a name and date of birth. Financial-Somebody-Important didn't "bite" as easily on my offer. I think she may have attended the same Management Conflict Resolution Course that I did. Hehe...


Fidgeting began at 25 past the hour of 12:00PM...there was talk of concern for ending the meeting so that I might get to my Tysabri infusion (initially scheduled at 1:00PM) on time. Fidgeting seemed to increase somewhat when I advised the "tribe" I had called my wonderful infusion nurses late the day before and they graciously advised me I could "arrive whenever"...I certainly didn't want MY appointment to be cause for an abrupt ending to such an important meeting. (**Biting cheek here to keep from laughing as I fear insincerity might pass through my typing and I will be *found out*.)


And, I believe it was at this juncture, my eyes began to well up with tears. This is the point in the meeting where I explained to the "tribe" it was not, nor has it ever been, my intent to CREATE a problem, but rather work to find a solution. I stated I was there, making my points, on behalf of ALL MS patients who cannot advocate for themselves. I commented that, in spite of having MS, the majority of my brain still worked and processed and I have little disability compared to many other MSers. I stood to gain NOTHING financially from my ongoing persuasions to discuss Club Med's practices and billing...I remain gainfully employed and BLESSED with 100% insurance coverage, no matter WHERE I receive my Tysabri. I was in this room, writing so many emails, making tons of phone calls, not for myself, but for others far less fortunate than I. But for the grace of God, go I.


And I could only HOPE one day, if or when the time comes that I can no longer advocate for myself, someone...ANYONE, just as I am doing now...would come along and advocate FOR me.


The room silenced. The welled up tears in my eyes were real. And THIS, my friends, may have been the ONLY point made that did not fall upon deaf ears...


And, by the way...the FAT LADY still hasn't sung (Mr. CEO and Club Med legal team...that's CODE for "it still ain't over".)...



Tuesday, December 09, 2008

Please Welcome The Latest Passenger On The Bus...(And Somebody PLEASE Scooch Over And Make A Seat Available!)

I received the following email last week (and much to my embarrassment, I am only NOW responding...my bad):


Hi Brain Cheese:

I'd like to formally introduce myself- my name is Robert Groth and I'm a new member of the MS blogging world.

You can meet me here:
http://www.ConquerMS.com

I've almost finished my blog but I've got a few things to straighten out- you may notice this.

Diagnosed with MS in 1989 at the age of 19.

I hope to speak with you again fellow MS blogger!

Blessings,
Robert Groth


**Off to change that drat link over there and add one more to the "community"**

Monday, December 08, 2008


This is a test of the Emergency BrainCheese System. The BrainCheese broadcaster of your area in voluntary cooperation with the MS Society and other authorities have developed this system to keep you informed in the event of an emergency.

REMEMBER, THIS IS ONLY A TEST.

Beeeeeeeeeeeeeeeeeeeep.

If this had been an actual emergency, the Attention Signal you just heard would have been followed by official information, news, instructions, gossip, or lies.

This concludes this test of the Emergency BrainCheese System. And now we will return you to your regular programming...at some point...

Saturday, December 06, 2008

The Scent of Insanity...

I think I'm having olfactory hallucinations, which started right after my Tysabri infusion began this afternoon (and I'm pretty certain this experience is NOT one of the *adverse reactions* listed on the Tysabri pages!). Either that or, I've been secretly dousing myself in a bitter smelling perfume. I've been smelling this intense "odor" on and off all day...and I don't WEAR perfume! Perhaps it is just the scent of insanity wafting through the air? (Or maybe I should check the bottoms of my shoes?!? I did seem to find myself wading in some rather mucky waters today. Argh, argh) LOL

And speaking of things smelling fishy (well, actually what I'm smelling is NOT fishy...it's like a really bad $10 Avon perfume!)...a big "shout out" to the Club Med CEO I met with today at...well...CLUB MED. Now that I know you've been reading this blog, I thought I should formally welcome you! My brain may have rotted away my executive functioning, but my *manners* remain intact...LOL

Friday, December 05, 2008

White Trash Barbie Meets CEO Barbie...

Yes, it's 4:00AM Pacific Standard Time. I've spent the past 3 hours since returning home from work preparing my reams of papers and emails for a meeting tomorrow (today really) with the CEO and CFO of Club Med. That's right...you read the line correctly. I am meeting with the Chief Executive Officer and the Chief Financial Officer of the health care business conglomerate I so kindly refer to as CLUB MED to discuss our "issues" we have with one another as they relate to Tysabri.

They called the meeting, I didn't. They now want to meet with me. I have no idea what their agenda is and frankly, it doesn't concern me greatly. I KNOW what my agenda is as it has not changed since August! My biggest concern is the possibility of a wardrobe malfunction, not what either party may or may not say...LOL

That's right...I'm PWT (poor white trash) and I have no *power suit*. If I were CEO Barbie, I'd have several plastic shoes and outfits to choose from. Do you suppose jeans and a T-shirt is a bit TOO casual?!?...

Wednesday, December 03, 2008

Shots Have Been Fired...

So, the first shot fired over head of Club Med has hit a target...thanks ONCE AGAIN to Lisa over at Brass & Ivory for her assistance in putting together a blue print of action (if you haven't gone over and read her blog, it's about TIME you do!).

I sent the first copy of "the letter" via email Sunday late night, only to discover on Monday, NO ONE had received it due to Club Med's email filter system...sooooo, I proceeded to send it again NO LESS THAN FIVE TIMES between Monday and today...each time, getting *blocked* by Club Med's filter. I eventually just copied off the letter and put 5 copies in the US Postal mail, faxing a copy to Dr. She Who Will Not Be Named office, and alerting her personal minion assistant it was coming across the wire. I then headed off to work.

By the time I had arrived at work, my cell phone had a message, which was from one of the Club Med MS Clinic representatives. As I have said all along, I don't have ANY issues with my neurologist or the clinic...just the hospital system that is GOUGING Tysabri costs. The clinic representative wanted to know what she could do to assist and I politely told her NOT A DAYUM thing! I needed to hear from someone way higher up the Club Med food chain than her and, if I DIDN'T hear from one of the powerful untouchables, I would be proceeding with plan *B* as outlined in "the letter" (see previous post if you are just tuning in to my Tysabri billing saga). She tried to tell me the elusive letter from the Clinic was forthcoming and had "just been approved to be sent out" (detailing billing costs of Tysabri for ALL MS clinic patients on the drug)...I again calmly and graciously told her that was *nice*...but if I didn't have a copy of the letter in my hot, perimenopausal hands by Friday AND one of the powerful untouchables hadn't contacted me by then either, plan *B* would be initiated (aka, war would be declared). She told me she hoped it wouldn't come to that. I'm not exactly certain what PART of plan *B* has the sharpest teeth, but I imagine it is the "I'll contact the media" part. LOL

And now, for the cold hard truth...I DON'T LIKE CONFLICT. As a matter of fact, I tend to steer clear of it whenever possible in my personal life. Every day, I am faced with conflict in my job...either a patient is mad at me because I'm not doing what THEY want, or a professional is mad at me because I'm not doing what THEY want. If I commit someone, the committed becomes angry and if I don't commit someone, the referent is hacked off. I deal with CONFLICT for nearly 9 1/2 hours a day EVERY day I am at work. So, the idea of having to manage even MORE conflict at home is overwhelming.

But here's another cold hard truth...I am taking on this conflict with Club Med (and insurers), not particularly because of my OWN needs, but for the needs of countless other MS patients who either cannot find their own voice to do so or simply don't know how. I have excellent tax-payer funded insurance...I pay NOTHING for my Tysabri infusions, once my yearly deductible is met (which ends up being met usually no later than March of any year, estimated to cost me around $1400 out of pocket.). I could easily go merrily along for 10+ years and not exhaust my 2 million dollar lifetime maximum benefits. I don't NEED to fight with Club Med. I WANT to fight this fight because it is important...maybe not in the big picture of things to come...but in the every day battles MS patients struggle with. Battles such as whether to pay their rent or get the medications they need.

When I am able to keep the above perspective, I am ENERGIZED to take on this battle. And when I read your many comments of encouragement here on CHEESE, I am humbled by your show of support. WE, as MS patients, MUST fight these battles whenever we are able because no one is going to listen to us or fight for us unless WE do it. I am currently physically and emotionally capable of doing so, but many MSers are not...they are exhausted from their disease or beaten down by a health care or disability system that has turned its back on us. YOU keep me fighting/speaking out...and because of this, I thank you.

OK, I'm starting to sound like a poorly written and crudely articulated Obama speech, so I'll stop. LOL Of course, I will keep everyone informed here as the end of the week unfolds and I have either gotten a response from Club Med or been ignored.

And, in answer to your question, Spaz Attack, about the multi Investor Village hits today on CHEESE...these "hits" come from the Elan Investment Message Board, which are a group of stock/shareholders monitoring Tysabri in the market...they are harmless peeps, but seem to know/monitor whenever the word "Tysabri" is whispered on the Internet! If you recall, Elan is the maker of Tysabri (Biogen Idec corp here in the States)...fear not. They often follow my Tysabri tales.

Must drop off to sleep now...I am preparing for what "could" be a somewhat eventful end to my week and I most definitely need to be well-rested. I also get my next Tysabri infusion on Friday (I think this is number 8?), so the week WILL end with a big bang or *banging* in my head from headache/body aches!...

Monday, December 01, 2008

Tysabri Billing Explosion...

Too much free time on my hands result in letters such as the following...well, too much free time on MY hands and a lot of help from Lisa over at BRASS & IVORY, that is!

I finally constructed (in the wee hours of my leg spasm morning Saturday) a 4 page letter to Club Med regarding my "issues" with them and their Tysabri billing practices. Then, in a pure moment of unusual wisdom, I sent the letter to Lisa for editing (thank you again, Lisa!) before emailing it off to the powers that be. Lisa was able to take my ramblings and condense them down into a nice, succinct letter addressing my concerns. I waited until last night to forward the "letter" to Club Med (one should always sleep on any communications involving threats...LOL) and I have no idea if *they* received it. Club Med's email system often blocks emails with attachments (removed attachments for purposes here) I have learned.


But here is an edited version of the EDITED letter...I removed (once again) the IDENTIFIERS for myself and Club Med for privacy reasons:


12/1/08

Ms. *You Know Who You Are* et al,

With great disappointment, I note the lack of action as promised by *Club Med* in response to concerns addressed in our 9/23/08 meeting re: Tysabri infusion costs and HIPAA violation at the *Club Med Campus*.

During our meeting, I was advised ALL *Club Med Clinic* multiple sclerosis patients receiving Tysabri would receive letters providing a clear, concise explanation of all charges billed by *Club Med* in reference to Tysabri infusion costs. As offered, I have refrained from further inquiry or reporting to provide *Club Med* with ample time to fulfill promises made. Over TWO MONTHS have passed without ANY indication that action on the part of *Club Med* has occurred.

As you may recall, my primary concern was the $9000 price increase billed for infusion services received at the hospital location, only 50 yards from the outpatient clinic at *Club Med*,which is no longer allowed to provide infusion services to approximately 80 Tysabri patients. The charges billed to King County/*Rhymes With Netna* insurance company jumped from $3,708.00 to $12,785.70 (a 250% increase), explained to me as being secondary to a separate “formulary” used by the hospital, while the infusion service remained IDENTICAL.

Since our meeting, I have chosen to move my infusions to the *The Other Club Med Location* due to grave concerns regarding the HIPAA violation at *The Original Club Med Site* which we discussed. As previously stated, I have NO qualms with the DELIVERY of services provided at *The Second Club Med Site* and I find the quality of personnel to be excellent.

Having received the EOB for Tysabri infusion on 10/3/08, I see that *Club Med* billed an outrageous $11,234.45 of which $7,114.00 was reimbursed by my tax-funded health insurance coverage. If I were to continue receiving infusions from within the *Club Med* health system, your annual collections for Tysabri infusions alone would be $92,482.00 (13 infusions per year). Extrapolate this to the approximate 80 Tysabri patients currently in the *Club Med* system, annual FEES COLLECTED by *Club Med* approach $7,398,560.00 (pending reimbursement contracts with various insurers, of course).

Consider that the IDENTICAL service was previously provided at the *Club Med Clinic* for a lesser reimbursement rate of $2,868.00, the annual fees collected by *Club Med* would only be $2,982,720.00 ($2,868.00 x 13 infusions x 80 patients). I have learned from an outside source that infusion services WILL NOT be reinstated at the *Club Med Clinic* due to a *Club Med Hospital* policy disallowing variance in charges for IDENTICAL services provided. I, therefore, presume that *Club Med Hospital* has a $4,415,840.00 YEARLY PROFIT incentive to prevent use of the more cost effective outpatient delivery system for Tysabri infusions.

Since I have received no letter from the *Club Med Clinic* to date providing a detailed disclosure of charges for Tysabri infusions as promised, I can only assume NO MS TYSABRI PATIENT within your system has been provided this information. Likewise, no confirmation that HIPAA RE-EDUCATION for the *First Club Med Hospital Site* registration staff has been given as well. You may recall that a patient's name, date of birth, and his procedure time at *The First Club Med Hospital Site* was released to me, in complete disregard of federal law, by *The First Club Med Hospital Site* registration staff during my registration process in August of this year. However, I have maintained my promise to the *Main Club Med* by NOT taking or promoting further investigative or reporting actions to my insurer, federal regulatory agencies, or the media.

My patience with this process is exhausted and now I offer you a limited time to show action has been taken on the part of *Club Med* to address my concerns and the promises made in our 9/23/08 meeting. Only TWO things were asked of *Club Med*, neither of which placed an undue hardship or burden on your business, and yet no response. Therefore, if I do not receive communication from *Club Med* regarding these issues by December 5th, I will proceed with the following actions:

1. Lane Hatcher, a national HIPAA consultant, has encouraged me to report *Club Med* to federal regulators, knowing that your business will not likely be fined for violating federal laws, but WILL be MANDATED to provide the re-education we discussed. Using ONLY his name and date of birth, I have LEGALLY obtained detailed demographic data via the Internet regarding the patient named in the violation. I will contact him to advise his private health care information has been breached so that he may seek action to better protect his records/information.

2. Customer Service for my King County/*Rhymes With Netna* insurer has suggested I contact the Provider Resolution Team in Lexington, KY, to discuss concerns regarding contractual allowances paid to *Club Med* which are above and beyond U&C for this region (and, in fact, the ENTIRE United States). I will speak directly with the King County Benefits Liaison to request a re-evaluation of their contract with *Rhymes With Netna* and that an oversight process be initiated to insure charges are usual and customary. Given the County's current budget crisis, I assure you this matter will be given full and swift attention.

3. I will release both my name and personal identifiers as well as the *Big Name of Club Med* to a journalist in Washington D.C., who has requested to make public Tysabri delivery costs obtained from over 26 patients and infusion sites around the United States. I have this information in my possession via spreadsheet and can assure you that *Club Med* is THE HIGHEST BILLED AND PAID INFUSION SITE IN THE NATION. Her survey includes both clinic and hospital sites from East, Central, and West Coast United States. She is awaiting my permission to print this information.

4. I will contact local media outlets to determine interest there may be in exposing the cost of delivery for Tysabri within the *Club Med* system as compared to other infusion sites in the region, including what taxpayers are funding via my employer, King County.

I certainly hope to receive communication from the *Big Ol' Club Med* System no later than December 5th so we might all lay this matter to rest.

Sincerely,


BRAINCHEESE