ACCOUNTABILITY...Subtitled - "My Day Today"...

"Are you OK?" the nurse asked me in that nursing voice I have used myself a thousand times...the one that expresses the WORDS, but not really wanting to know the answer to the question. Especially when the "answer" might require action of some sort, versus a simple verbal response.

"Yes," I mutter, as my bottom lip quivered and tears fell with abandon on my shirt. I looked away and out the window (later typing the previous blog post here), hoping my body language alone would be the only permission the nurse needed to relieve herself of any further responsibility of inquiry or interaction. As is generally typical, my lack of verbal engagement sent the nurse scurrying out of the infusion room, I'm sure wiping off her forehead of imaginary sweat, and letting out a big sigh of relief. "Dodged that bullet of potential intense patient interaction," I'm certain was the continued conversation in her head.

I sat crying and, at times sobbing, to catch my breath as the recent events of my life pushed against my temples, demanding relief from the carefully compartmentalized BOX in my brain where I have been storing the details. I felt myself shutter with a chill as my tears released days (and possibly years) worth of pent up emotion I have been storing...waiting for the "appropriate" time to let it out...waiting for the "best" moment to scream, or cry, or laugh hysterically. Today just happened to be that day.

Today was the day where the ACCEPTANCE of the facts of my life with Multiple Sclerosis burst out of my securely guarded brain box and flooded my thinking. As I sat listening to the young girl in the chair next to me behind the HIPAA curtain (she couldn't have been more than 14 or so) talk about her infusion and listened to the steady whirl of the pump that was infusing MY Tysabri, it hit me: I will be chained to this pump or a shot or a pill and this crappy health care system for the absolute REST of my life. I will wear the scarlet letters of MS on my chest like a humiliated adulteress full of illness/sin until the day I die.

My day began very early this morning like ALL of my recent mornings of late...my eyes popped open after 3-4 hours of sleep full of grit and sand, but refused to close again, while the aching in my neck and body served as their reminder to STAY open and aware. And then, my brain began its whirring sound as what few neurons I have left began to crackle and snap and rub together, creating thoughts I was forced to attend to. The first thought that entered my mind: "Don't forget to stick 'em with the fact your insurance company paid $10,000.00 less for the same infusion in the same location 2 months prior to the one you are disputing."

That thought was all it took to push me into completing my bed ballet (stretches so I can WALK without falling over when I stand up!) and heading back to the desktop computer (attached to the printer) to search insurance EOB's (explanation of benefits), highlight them, and finalize my strategy for my face to face meeting with the head of registration/billing at Club Med. I was in pure hope I might finally have my say about the cost of my most recent Tysabri infusion. And thus, began my day.

So, to make a completely boring and lengthy post as short as possible (forget overcoming the BOREDOM!), here are the events of my day:

• I DID meet with the head of registration/billing at the Club Med location where I receive my infusions. She DID provide me with what she called an itemized bill, which was no more than what appeared on my EOB. When I called her on this fact and my request for a BREAK DOWN of CHARGES versus simple statement items like "hospital incidentals - $10,000gazilliondollars", she told me (I kid you not) "no one has that...it's a package deal negotiated with your insurance company". The sound of my jaw dropping in utter muscular contraction I'm sure was heard as far away as Portland! (Did you hear it, ZEE??) Now mind you, EACH of my conversations today with Club Med personnel could take up an entire blog post and I'm just too tired/have headache right now to detail them...so suffice it to say, I challenged her on her bogus statement and continued to demand to speak with the person in charge of NEGOTIATING the contract with my insurance company or the financial officer who INPUTS the contract information into their computer system which leads to the OUTRAGEOUS BILLING!!! And, after this person having to admit that, "yes", there must be someone within the Club Med organization who actually DOES this job, she provided me with the name and number of the FINANCIAL DIRECTOR for ALL of the Club Med locations and ADMITTED she did not know this answer. STEP ONE OF ACCOUNTABILITY I proceeded to drop the next bombshell...the discrepancy of charges between identical services being provided at Club Med only two months apart and the 1,000% increase in cost that occurred. She peered puzzling at the papers in front of her and finally admitted she could not answer THIS question either. STEP TWO OF ACCOUNTABILITY.



• I then decided to pay the neuro clinic an unscheduled visit and see if my new "friend" and Clinical Administrator might be available to meet with me...oddly, she was able to make time for me...on her lunch break no less. I reviewed with her IN PERSON the same information I have been spouting on the phone to no less than 7 Club Med personnel, dialed up my "specialty pharmacy" while Ms. CA dialed up Club Med's pharmacy and proceeded to learn Club Med Pharmacy had not even RECEIVED my latest Tysabri shipment (to be infused in less than an hour at this point!) because someone in the neuro clinic had misinformed my "specialty pharmacy" and told them not to SEND it! This is where verbal language became a secondary form of communication and BODY LANGUAGE ruled the roost. I was now faced with the possibility that, AFTER ALL THIS, I might not even GET my TYSABRI infusion today even if I WANTED it...can you imagine the smoke that began to curl from my ears, nose, and lips? After some scuffling of personnel, my JULY TYSABRI dose (which oddly was NOT infused in me in July...didn't I already have doubts about this?!?) appeared from a refrigerator in the clinic, calls were made to the Director of Pharmacy, and an "agreement" was struck to "just this one time" go ahead and ACCEPT this tiny bottle of liquid gold into the hospital pharmacy and infuse me with it. At this point, I made mention that, should Club Med now charge me AGAIN (via my insurance) for the cost of my Tysabri medication (which I am certain now happened in July), they would be "double dipping" my insurance company and THIS, my friends, is called INSURANCE FRAUD. Not to mention probable state pharmacy board regulation violations of accepting a medication into pharmacy WITHOUT being able to verify the distributor or who's hands it may have gone through before reaching Club Med Pharmacy. Suddenly, I began to make sense to the Club Med directors and administrators and I was being taken seriously. STEP THREE IN ACCOUNTABILITY.



• By the time I was finally leaving the neuro clinic, I was running late for my infusion and my car was most likely going to be ticketed where I had left it 2 hours before. I paced quickly the entire 50 YARDS (if that) from the clinic to the hospital infusion center, left a quick note on the desk (because I couldn't locate any nurses...most bizarre...I considered checking their drug stock while no one was obviously looking, but decided against it...LOL) asking them to call me on my cell phone if someone ever resurfaced to start my infusion, and raced the distance to the street to try to save myself the $40 parking ticket I was certain to have received. Before I got to my car, I started feeling dizzy, so decided I MUST sit down for just a moment and eat a bite of the sandwich I had purchased earlier in the morning. I was hungry and literally exhausted. And, as I reached into my bag to grab a bite of sandwich, I discovered my FAVORITE FLEECE JACKET I had tied to my bag (Hey, infusion centers are frickin' COLD like a morgue! I went prepared.) was missing...it had fallen off in my travels about Club Med and was most likely gone forever.



• I simply could not take anymore today. I left my car to the will of the parking enforcement trolls, sat on a bench in the sun, tried to nibble my sandwich, and began crying. I was worn down to a nub and hopeless ANY of my challenges with Club Med would result in ANY benefit to ANY MS patient ANYwhere...which was, after all, my ultimate intent: to push the system to become accountable for their actions toward Multiple Sclerosis patients. Quite possibly NO ONE would EVER demonstrate any integrity whatsoever in this system.

And THIS is where the previous blog post began and ended. What happened shortly AFTER I posted from the infusion center on my trusty laptop revived me.

Having had my cry and release (which is kind of like "catch and release" really), I just sat staring at the wall and out the window of my Club Med infusion room. There was a knock at the door and in walked a woman who identified herself as the Administrative Director of the Neuroscience Institute...she wanted to "talk" with me. She apologized profusely for the manner in which I had been treated for the past 2 weeks, quoted statements I had made from my plethora of emails (indicating she HAD read them), spent time letting me rant about my concerns (all over again), and let me know she would be convening an advisory group, consisting of the Director of Pharmacy, the Financial Director of ALL the Club Med locations, and the Insurance Contract Negotiator for ALL of the Club Med locations and possibly Dr. She Who Will Not Be Named to scrutinize the billing practices/costs/and delivery system of TYSABRI for ALL patients receiving Tysabri at Club Med. She assured me if there were "errors" in current billing, i.e., "double dipping" going on, this would be corrected and reimbursed as well as looking at what are reasonable and customary charges for Tysabri distribution around the region and adjusting Club Med's billing practice accordingly IF feasible.

OK...so she probably just blew smoke up my a$$. I KNOW that. But at least the "smoke" was finally coming from someone with a title among the mucky mucks at Club Med to hold ACCOUNTABLE for this smoke! I had managed to gnaw my way up the food chain far enough that there was less wiggle room for the "buck" to be passed. The best part of my interaction with the Institute Administrator was, she "magically" found my jacket (which made me paranoid someone had actually taken it OFF me to try to give me that "last straw" effect and hope my camel back broke! LOL). And, when I finally made it out to my car almost 5 hours after parking in a two hour zone, THERE WASN'T A PARKING TICKET. So yes, I broke the law by leaving my car there, but I was prepared to be ACCOUNTABLE for the ticket...

I'm not holding my breath that there will be any decrease in cost of Tysabri infusions at Club Med and I'm pensive I may have STILL have to locate another infusion center more reasonably priced to continue this medication...which "could" mean I will have to say "bu-bye" to Dr. SWWNBN and be assumed under another neurology practice in the area. I made the PAINFUL decision to go ahead with the infusion TODAY in hopes of buying me some time to get this all sorted out...I'm also a bit "nervous" about suddenly stopping Tysabri after only 5 infusions in light of the recent study suggesting possible severe rebound/relapse in doing so.

But as far as Club Med is concerned, I'm pretty sure I've created enough of a disturbance to warrant attention to the matter at hand. And for this, I am pleased. I'm sure this will continue to be a "baby step" process of ACCOUNTABILITY with Club Med, but I'll continue to try to teach them to WALK with some integrity.

**ACCOUNTABILITY: ACTIONS TOWARDS OR INVOLVING OTHERS THAT REFLECT THE INTEGRITY OF THE PERSON YOU WANT TO BE.**

What My Life Has Become...

It's almost 2:00PM Pacific Standard time and I am sitting staring out the hospital window of Club Med while the rhythmic clicking of the IV infusion machine that is delivering my Tysabri taps like a soft heartbeat in my ear.

It's a beautiful day outside today...and all I can do is sit here and cry.

The "Squeaky Wheel Theory"...

They say it is the squeaky wheel that gets the grease...right now I'm worried it may be the "squeaky wheel" that gets infused with ANTIFREEZE!

Oh my...where do I even begin with my day today and the ongoing saga of battle regarding my Tysabri infusion at Club Med? For those of you just joining this previously recorded program, please see the last gazillion posts to catch yourselves up on the topic.

There are simply no words to express my utter dismay and disgust regarding my continued inquiry attempts to "get to the bottom" of what I believe to be an outlandish cost of my latest Tysabri infusion at Club Med (yes, this hospital will continue to remain nameless and faceless for all past and future legal purposes...LOL). After nearly two weeks of DAILY emails and/or phone calls to various sources within Club Med's care delivery system, I am exhausted. Yes, TIRED...but not down. I believe someone will simply have to put a nail in the tire on this "squeaky wheel" to shut me up (hence, my concern I "could" be infused with antifreeze tomorrow!). And I am exhausted, not from the tiring follow up of communications (or communication "attempts"), but from the seething ANGER I feel growing in my belly regarding this matter...the bile rises in my throat every time I THINK about this obnoxious situation.

Today, I placed a SECOND call to the 4th person I was directed to earlier in the week (there have been many attempts to "pass the buck" on this one...believe me...like about 7 people total to date!) and left a very curt, but firm message that I expected a call back from this identified person and found her lack of response to be both negligent and rude...I received a call within 15 minutes (of course, I "may" have threatened to bring a news crew with me or something...I really can't recall). THIS identified person was the first I have spoken to who made a plan with me to ANSWER my questions that I had been posing for two weeks:

• 1. I want someone to sit down with me from Club Med with a line itemization bill of charges from my 7/29/08 infusion and explain such things as "therapeutic radiology" and TEN THOUSAND DOLLARS of "hospital incidental" charges.


• 2. I want an explanation of WHY the charges for my Tysabri infusion nearly QUADRUPLED by simply walking from one area of Club Med's complex to another.


• 3. I want an estimated cost in advance of my infusion on 8/29 for what Club Med will be billing my insurance company IF I consent to receive this infusion again at 1:00PM.


• 4. I want to know the exact vial/lot number from Club Med's pharmacy that they are using to mix my Tysabri (that is pre-sent from my "specialty pharmacy") for my infusion AND if it does not match what my "specialty pharmacy" is sending, I want an immediate explanation.

I mean really? Is that TOO much to ask??? Apparently, it was. Who knew? THEY DID.

So, I was skillfully "ignored" until I began to make squeaky wheel "threats" of exposing the lack of communication to me as well as bringing in regulatory agencies, such as my private insurance company, state pharmacy board, etc. Suddenly, my phone was ringing and, like roaches exposed to a bright light in a previously dark kitchen, there was a STIR of activity from Club Med today...of course, it probably also created a sense of "encouragement" when I suggested I might "camp out" in the Administrator's office and await arrest by the local police department for trespass! I say "suggested" because the word "threat" sounds so hostile and I am in NO WAY a violent person (and, just in case my blog is being monitored now for legal or psychiatric purposes by Club Med, I must declare my physically harmless nature!).

I found myself at points throughout my morning BEFORE going to work for 9 1/2 hours today, exhausted from the emotion of it all. It seems so bizarre that a health care organization would treat one of it's customers in such a manner as to potentially CREATE illness...but here I sit as living and breathing proof of it all.

I DID have yet another conversation with my "specialty pharmacy" representative who was very upbeat and encouraging. She provided me with information about the charges THEY make to my insurance company (prepaying the cost of my Tysabri) and suggested questions I might want to ask Club Med's pharmacy for clarification, going so far as to say, "If they are re billing you for the cost of your medication, which your insurance company already paid for, then that is fraud, ma'am". She gave me the direct lot number on the vial of Tysabri that was sent to Club Med yesterday and suggested I might also want to call the Tysabri TOUCH program as well to discuss my dispute with the billing...I'm waiting to see what comes out tomorrow before I alert the TOUCH Police as it is NOT my intent to make it difficult for OTHER MS patients to receive their Tysabri at Club Med if they choose to.

So, tomorrow before my scheduled infusion time, I will be meeting with the head of some department or another to review my LINE ITEMIZED BILLING STATEMENT and ask questions about the charges. I am also "supposed" to receive a direct estimate of the cost of the Tysabri infusion that is "supposed" to occur in the afternoon. I have also made a decision that I will NOT continue to allow my insurance company to be billed at the cost of my previous infusion...I will simply take my cart and squeaky wheel elsewhere to a more "reasonable and customary" infusion site. Depending on my "mood" tomorrow, I may go ahead and accept my infusion to buy another month of time to make a site switch.

Ultimately, what is most disheartening about this entire ordeal is this:

• Club Med will NOT be changing their billing practices over my dispute.


• The cost to patients will REMAIN inflated at this infusion site.


• MS medications will CONTINUE to be priced right out of the market, leaving them only available to those able to manipulate the health care system or privately pay.


• I will be saddled with finding perhaps another neurologist AND an infusion site that has a more reasonable billing practice.


• And my insurance company will CONTINUE to pay outrageous prices for medications to treat or slow my MS progression with no PROOF the medicines are even effective...chipping evenly away at my insurance lifetime limit of benefits until I join the ranks of the "uninsured" or "uninsurable".


• I will most likely OUTLIVE my maximum insurance lifetime benefits since MS most likely won't kill me, making it one of the most COSTLY treated diseases next to HIV/AIDS and rare hemolytic disorders.

Oh, and I'll STILL have Multiple Sclerosis, too...

Am I Worth This?...

A few days have passed now since my last rant about the overly-priced-and-probably-gouging-cost of my last Tysabri infusion...but I have neither forgotten NOR stopped trying to pursue the matter with Club Med, where my insurance was most recently billed $12,785.70 dollars for one, measly infusion! No, I have NOT stopped my quest to get to the bottom of this.

I have YET to find someone at Club Med willing to talk to me about the matter, however. I have made at least one phone call or email a day regarding a request to MEET IN PERSON with a representative to go over the last Tysabri bill and, wouldn't you know it? I JUST KEEP GETTING BOUNCED AROUND FROM PHONE TREE/EMAIL/DEPARTMENT TO DEPARTMENT! I've grown impatient and disgusted with the entire matter.

More importantly, I cannot find ANYONE who can or will tell me what the projected cost of my NEXT TYSABRI INFUSION will be on Friday. WTF?!? This is pathetic...and perhaps I'VE become (a)pathetic, too.

In my most recent rant about the cost of my Tysabri infusions (click the link in the first sentence of this post to read the ramblings of a mad woman), I totalled what would be the "projected" yearly cost of receiving the infusion 13 times a year at the most RECENT cost my insurance was billed...almost $200,000.00.

Frankly, I have come to the conclusion I am simply not WORTH this cost to the tax payers of my county (who PAY my insurance costs because I am a government employee) and I cannot morally JUSTIFY continuing this medication...and kick me if you must but, I'm not so sure ANY OF US are worth the outrageous cost of RECEIVING the medication. It is NOT the TYSABRI that is outrageously priced, so I can't even blame a drug company for this one...no, it's the HEALTH CARE DELIVERY SYSTEM that is at fault here.

Yes, you read this here on CHEESE. It is not the pharmaceutical company to blame. There, I said it again. It is not the fault of the FDA. Let me add that, too. Nope...it is the fault of the "CLUB MEDS" across America that are driving the cost of this medication out of the realm of feasible and justifiable cost of delivery.

Am I WORTH $197,414.10 a year? Nope, probably not...

MS Optical Illusion...Just Because You Can't See It, Doesn't Mean It's Not There...

I'm sure by now you've all seen the famous optical illusion of the old woman/young woman in the above picture? You DO see both images, right? The old woman has a feather in her hat as does the young woman looking over/toward her right shoulder?? If not, keep staring at it...it will come to you...eventually.

I've decided Multiple Sclerosis is like an optical illusion...very little about the dayumed disease is truly visible, and yet we SEE the disease showing up in our every day lives via fatigue, pain, vertigo, visual changes, etc., because we are LIVING with it. All those nagging symptoms that remain most likely UNSEEN on MRI, blood work, or even physical exam are easily identified through the eyes of an MSer. But for those "outsiders" that just catch glimpses into an MSer's life, it is even more difficult to understand what they cannot "see".

I have a strange hope that if they just stare at us long enough (metaphorically speaking or not!), eventually their vision will adjust
to what we MSers see on a daily basis...both the obvious and the hidden parts of this disease. It's just a late night thought...

Blogity, Blog, Blog, Blog...

In the comments of the previous post, Weeble Girl wrote, "Maybe you could write a post explaining to the rest of us Luddites how you manage to create such wonderful and disturbing images..."

Well, first I had to look up the word *Luddite* because I was getting it confused with the word *Hutterite*...and although most *Hutterites* dress consistently in simple means, I don't think there is any uniformed "religion" among the Luddites, except the common belief all technology is evil. Either way, I'm sure on some level, BOTH groups would object to the graphics here on CHEESE. Hehe...

So, let me attempt to *enlighten* those of you interested in exactly HOW I create the graphic images here. FIRST...I develop a DISTURBING topic. OK, maybe the topic/writing itself doesn't initially start out *disturbing* when I begin writing a post or developing ideas for posts here (but the ideas DO come from my brain, so...DISTURBED!). But, that IS how I start out. THEN, I transfer all my ideas to my personal monk in the picture up there, who painstakingly DRAWS everything by hand.

Seriously now, I have an ancient HP Desktop computer that came with two software programs (in 2003, I think). Free is good. I like free programs. But when I started using the programs (self-taught, which I recommend is the BEST way to learn any program...just pound the keys until you either figure it out or break your computer!), I realized one program did certain things (like "smudging") that the other didn't...so often times, I use BOTH programs to create an image: PRINTSHOP ESSENTIALS 12 and PHOTO IMPRESSIONS 4 (found in ARCSOFTWARE SUITE). I also have an HP PHOTO PRINTER/SCANNER and a NIKON 15 CAMERA that occasionally are used to do my bidding. Really, absolutely NOTHING high tech here.

Almost ALL of the graphics I begin with start out by STEALING something off the Internet...Google Image is a wonderful search engine to find pictures related to my *disturbing* topics. Sometimes, I can even locate graphics (like the NOSE HAIR post) that require no altering at all! I just save the graphic off the Internet, then recapture it into my post from the file where it is stored on my computer.

Graphics like the one in the previous post (I'm a bit disappointed BLINDBEARD has not even COMMENTED yet on that one...eh hum?) required me to do an Internet image search for "pile of crap" (hence the *poo*) and "chef's knife" (knife in graphic). In Window's XP, it is very easy to save a graphic/picture from the Internet to a hard drive...all it requires is a right click of the mouse and Bill Gates asks (among several options/questions) "save picture as"...you just click on the "save picture as", then you are asked to give it a file name and decide WHERE on your hard drive (or disc) you want to save it (destination).

The particularly *disturbing* image in the BLINDBEARD post was created in PRINTSHOP ESSENTIALS 12. There is a command in this program that allows one to "import from disc", and I just bring up the first graphic onto the page I want to work with (the *poo* was first). I delicately (or as delicately as one can with an unsteady right hand and a mouse!) "crop" what I want from the *poo* picture, then bring in the second graphic (knife) to the page. Again, it is just a matter of cropping and positioning (layering) within the program that allows me to create some of my more horrendous graphics. I can choose frames (or boxes with color), text, and a world of other options to create my final product. Then, it's just a matter of saving the final graphic/picture to my hard drive and adding it to the post.

Creating graphics/pictures for CHEESE is one of the really "fun" things about blogging for me...the more *disturbing* the merrier in my book! Often times, what I have to SAY in a post is basic crap...but, because a picture speaks a thousand words, I like to capture the gist of what I am trying to spew via graphics. That way, hopefully neither ONE of us is bored to tears in CHEESELAND.

Now off to check on my hired Monk...you just can't get good help anymore...sigh. :-)

Give That Woman An Award!...

Just pitiful...the level "some people" will go to when they run out of IMPORTANT things to say.

Take my sister-separated-at-birth BLINDBEARD, for instance. Most people don't know this, but we are twins. She's the thinner, cuter, funnier one, but I don't hold that against her (much). I'M the one however, that our mother chose to KEEP of the two...because I was more DESERVING of living a life destined to unfold in a dysfunctional, trailer-trash family!

I cruised over to her blog this morning (note the link in the last paragraph) and discovered she had been pining for a Blogger Award. Who knew? I always had assumed she was the more outspoken of the two because she was taught Hooked On Phonics and I learned to read off bathroom walls. Come to find out, SHE'S the shy one!

Well, anyway...I just couldn't resist her line in today's blog post which said, "I want to win some blogger awards! Even if they are, 'Most Manure Spewed Forth By A Moron' or something like that." So, without further ado, I award Madam BLINDBEARD with this coveted blogger award:

Yes...for cuttin' through the crap and giving new meaning to the word HUMOR, you are hereby bequeathed your VERY OWN Blogger award that can be used by no one else...mainly, because it has YOUR blog name plastered on it. But I'm sure with a little white out (if you'd stop sniffing the white out for five minutes and use it as was meant to be used...to paint fingernails!), you could probably pass this award around to other bloggers.

And now, my work here is finished...good night.

I Heart Capitalism...

Just got off the phone with my "specialty pharmacy" company that supplies my Tysabri, who buys the product direct from the drug pharmaceutical company. My insurance company, who contracts with the "specialty pharmacy" company, pays said "specialty pharmacy" company a flat, negotiated rate for each vial of Tysabri:

$2,400.00 per vial

I put batteries in my calculator so I could get these figures right for you...wouldn't DARE rely on my MS brain to do simple calculations!

Tysabri is recommended to be administered every FOUR weeks (not necessarily monthly, as some proclaim), which means in a 364 day calendar year, that would be 13 doses. If my batteries haven't failed in the calculator, that is a cost FOR THE MEDICATION ALONE of $31,200.00 a year, which is far from inexpensive...but THAT's NOT my point. And I DO have one.

My neurologist's office billed my insurance (from the previous post rant) $3,708.00 dollars for one of my infusions there. OK...calculations get a bit more complex, but 13 x 3708.00 = $48,204.00.

CLUB MED (who continues to remain nameless and faceless here on CHEESE, lest they discover the utter bile-filled disgust I have with them right now and decide to infuse me with anti-freeze next Friday!) billed my insurance $12,785.70 for my infusion with THEM. (**grabs calculator again) 13 x 12,785.70 = $166,214.10. That's a difference of ONE HUNDRED EIGHTEEN THOUSAND TEN DOLLARS AND TEN CENTS. Need to see it in numbers?

$118,010.10

Hmm Huh...LUCY! SOMEONE'S GOT SOME 'SPLAININ' TO DO.

Based on total infusion cost per year at my neurologist's office versus total infusion cost at CLUB MED, Tysabri COULD be costing my insurance company (which means YOU AND I indirectly) anywhere from $79,404.00 dollars per year and $197,414.10.

PERSONALLY, I KNOW I am worth more DEAD...

Tysabri's Hidden Costs...

I am lying here in bed staring in utter disbelief...still. No, there's nothing pornographic going on in my sleeping lair! I'm talking about the pieces of paper in front of me...EOB's...Explanation Of Benefits. The pieces of paper that my insurance company provides me (as the insured) explaining what they have paid out regarding my Tysabri infusions.

$12,785.70

This is the recent amount Club Med billed my Gold Card insurance for infusing my latest dose of Tysabri on July 29th. Yes, you read that correctly...OVER TWELVE THOUSAND DOLLARS!

$8,009.63

That's the final amount my insurance company PAID Club Med for the above bill.

$3,708.00

That's the amount my neurologist's office billed for my Tysabri infusion on April 8th.

$2,868.30

That's the amount my insurance company PAID my neurologist's office for my April infusion.

Does anybody ELSE see a problem here?!? WTF?!? I walked less than 100 yards from my neuro's office to Club Med and this less-than-a-football-field walk ended up costing OVER FIVE THOUSAND DOLLARS!

OK, news flash...I am NOT after all, going to be billed $4,000-$5,000 dollars for my two Tysabri infusions that have already occurred at Club Med. I can breathe again and NOT have to contemplate gun ownership. This piece of information alone should have me whistling "Party On" out my butt. BUT(T), it doesn't. There's a really big problem here and one that I will not be quiet about! I believe my insurance company is being GOUGED. And I also believe it is this very practice that pushes everyone's cost of health care over that imaginary edge.

I have spent the past two days emailing and making calls about this issue because my a$$ is so chapped about the matter I can barely sit down comfortably. I have been taking names. I have been dropping names. Words like "audit" and "State Insurance Commissioner" and "local newspaper" and "line itemization bill" have been spilling out in emails. Dr. She Who Will Not Be Named has forwarded the situation all the way to the top of the Club Med Food Chain. I have threatened to be arrested for trespass while sitting outside the Administrator's door if I have to. SOMEONE needs to provide me some answers about this exorbitant jump in fees just from changing a LOCATION of where I am being infused.

Dr. SWWNBN has politely asked me to remain "calm" while she works on the issue from her end...I have promised her I will remain chained to my dog house in my yard and await her response. I can do nothing about my rabid nature, however. This situation has my blood boiling and my mouth foaming...just call me Cujo.

It is bad enough Tysabri costs (this is the latest estimation I could find) around $28,000.00 a year JUST for the medication, making it the most expensive DMD available to treat MS. NOT TO CURE MS...just to TREAT it. One practically has to consent to monthly anal probing just to OBTAIN access to the drug due to the hypervigilance of the FDA and the TOUCH controllers. Add on the PRICE-GOUGING INFUSION CENTER charges, and one could be looking at spending anywhere from $80,000.00 a year to $110,000.00 a year. I don't know about YOU, but my employer has capped my life time insurance benefits to 2 million.

I used to think $2,000,000.00 was a lot of dough...apparently, it is NOT. At the rate Club Med is charging me (and mind you, this would be MONTHLY), I will burn through my life time maximum coverage allowed in around 10 years (I've already used several thousand dollars of that amount in the past 8 years I've worked for my employer...MS bites the big wallet) and this isn't even taking into account catastrophic illness or, GOD FORBID, a hospitalization for MS.

Lauren left a comment on the previous post about the high cost the infusion centers are charging. This got me thinking (and believe me, THINKING can be dangerous for me!). I wonder how many others taking Tysabri right now are AWARE of what their infusion sites are billing insurance? Any clues on this? I'd LOVE TO KNOW WHAT OTHER PEOPLE ARE PAYING FOR THEIR MONTHLY INFUSIONS (and not including the cost of the Tysabri...that is a preset amount negotiated by your insurance company). I'd LOVE TO SET UP SOME SORT OF TRACKING HERE ON CHEESE TO GET AN IDEA ACROSS THE UNITED STATES WHAT INFUSION CENTERS ARE CHARGING.

Anybody out there on Tysabri want to play along with this game? If you know what the infusion center where you get your Tysabri is charging (you can find this out from your insurance company), please leave a comment and I will accumulate numbers and geography and see if there is any rhyme or reason to these charges.

In the meantime, I'll just be chained here in my yard foaming at the mouth...

Waking Up On The WRONG Side Of The Bed...

Guess which side of the bed I stepped out of this morning? Yeah, I know the "Wrong Side" is really the "Right Side" in the picture up there...I'm directionally challenged.

But as I scraped the proverbial "poo" off my feet, I became very aware of several pains in my body. The Bewitching nose twitching/vibration was buzzing at full blast as well as the tight, invisible corset that has been developing around my upper chest. And my neck felt as if it had been duct taped to my pillow while I slept (my 3 hours) while the REST of my body had obviously played a full game of toss about.

I tried to entertain the notion of *business as usual* and go about my daily activities in preparation to get to work...but my body was having a board meeting of its own, failing to inform me earlier that it planned to shut down for some kind of inventory today. It was busy tallying the multiple nights of missed or restless sleep, recent stressors, the recent heatwave in Seattle, and a few "other" issues on a hidden agenda. The more I tried to force my body to proceed, the louder the inventory count became.

On days like today, I find myself mentally punching my body with words like, "lazy", "pansy", "weakling", etc. And my body throws a great punch at my mind as well, creating confusion and word-finding difficulties...making speech and conversation quite comical. It's a no win situation for either player really.

So, I called my employer and took a "sick" day...which, in itself, seems ridden with guilt: SICK. I'm not really "sick" by definition (or at least the definition I grew up with)...I have no fever, no pus draining, no cough, no broken bone, no vomiting, no surgical incision, no rapid heart rate, no pain with urination, no diarrhea, and no need for immediate medical attention. My body just aches and I have no reserve energy available to force my body out the door...it seems to be having a rolling black out from overuse on my internal generators.

It's hard for me to call in "sick" on days like today. I have great difficulty justifying to MYSELF a rationale for not being able to push myself hard enough to get to work, let alone provide plausible excuse to my employer. There ought to be a clause in the Multiple Sclerosis contract that just allows me to call in "M.S." and leave it at that. And my employer doesn't ASK me why I'm taking a sick day (by law, it's a no-no)...I just feel guilty that I SHOULD provide a reason. I suppose if I could provide a rationale to THEM, maybe then I could accept the reasoning, too.

The worst is when well-meaning friends call and ask, "What's wrong?" It would be a much shorter list to establish "what's right". I find myself trying to prioritize the *list* in an order that would most make sense to them..."Well, my neck really hurts, and I have a...what's the word? Oh yeah, TIGHTNESS around my chest, and my nose has this buzzing/twitching thing going on that's annoying but not painful, and I haven't been able to sleep comfortably for more than 3-4 hours a night, and my calves are really stiff, and my mind is in a...oh, you know what I mean...misty cloud? ("A fog?", comes from the phone.) Yeah, a fog...and I'm just too tired to care about any of it today."

I tend to always list the FATIGUE FACTOR last...nobody *gets* it anyway. At least not my generally healthy friends. They MEAN well, but they really just DON'T get it. I sometimes hear things like, "You just need to get out more"..."maybe exercising more would help?"..."oh, man, I know what you mean. I didn't get any sleep last night either"..."what have you been doing to make you feel so tired?" That last comment is priceless and sometimes almost causes me incontinence. How do I explain to people I most likely have been doing ABSOLUTELY NOTHING THAT WOULD QUALIFY IN THEIR BOOK as an activity to "make you feel so tired"? But, they are my friends and they DO mean well (I just ignore or sarcastically *betch* at those that are NOT my friends, who have lame-a$$ed questions/suggestions.).

I DID eventually get on the *horn* this afternoon and email/call Club Med to begin what may become a very lengthy *betching* process about my TYSABRI...that entire issue, I am certain, did NOT help my current bodily complaints. I know at some point in the night, while I was contemplating all possibilities of PAYING for my TYSABRI, I DID solve the world hunger crisis or at least devised a strategy to make a dent in it. Yes, I did! I came to the conclusion that, if I simply STOPPED EATING (which would save me several hundred dollars a month that I could put toward TYSABRI infusions), there would be more food available for everyone else. These are desperate times...LOL

Dr. She Who Will Not Be Named did email me a "no" when I asked her if I should cancel my infusion appointment next Friday, so maybe SHE'S planning on paying for my medical care now. I need to know if SOMEONE besides me is going to pick up the tab or I can foresee TYSABRI causing a 1:1 ratio of developing PML (Payment Might Lapse).

Off now to crawl BACK in my bed (and try to avoid stepping in that matter on the WRONG side!) and see if I can solve the crisis in Iraq...since I've already got a pretty good plan in place on that world hunger issue...

When It Rains...It's Just Another Day In Seattle...

Short post tonight...I'm just too worn down to say much right now. It IS raining outside this evening in Seattle. That's really not anything new, but since this hasn't occurred in several weeks here, the cooler, moist air is note-worthy.

I just found out today that my TYSABRI infusions are on shaky ground...well, not really earthquake shaky...more like may not happen shaky. As most of you know, I had been receiving my TYSABRI via my neurologist's office. Well, except for that one infusion in May where I had to get that "urgent" MRI to prove my neck was the cause of my hand numbness and NOT PML...I went to Club Med for THAT infusion. Then, this past month, my neuro's office informed me that I would have to return to Club Med for my TYSABRI infusion because the office infusion nurse had retired...go figure.

So, I received ANOTHER infusion in July at Club Med...within the hospital...assured everything was "right on track"...and I scheduled my NEXT infusion for August there as well.

Today, I was informed Club Med will most likely be billing me a gazillion dollars (like seriously somewhere between $4,000 and $6,000 big ones) for my two infusions there because the hospital is not set up to accept "specialty pharmacy" medications.

**THUD**

Because TYSABRI is so frickin' expensive, my health insurance uses a "specialty pharmacy" to provide the medication to me...an external pharmacy sends out the medication (as a means of controlling cost), usually to my TOUCH certified neurologist's office. Otherwise, I would be billed a portion of the medication if I went directly through my insurance and not use the "specialty pharmacy". That "portion" is itself several hundred dollars...I pay a copay of TEN DOLLARS if I use the "specialty pharmacy". I can't imagine anyone in their right MS mind getting their TYSABRI any other way! $10.00 versus $300-$500? Yeah, even I can do the math on THAT one.

Club Med (I am told) is not set up to "accept" external "specialty pharmacy" medications, yet they DID...TWICE...and now claim "oversight"? OVERSIGHT MY BALD, LILY-WHITE ASS. The hospital pharmacy had to KNOW the medication they received in the frickin' mail didn't come from their usual source!?! But, I...the patient...am the one to blame.

It's not the $4,000-$6,000 dollars that causes me to break out in hives and search local gun shops for a good "deal"...although I DID nearly swallow my back teeth on the amount. Nooooooo...it's the fact I may not be able to AFFORD TO RECEIVE TYSABRI AT ALL. Unless I can find another doctor's office or out patient site willing to accept me on their roster.

Part of me (that evil twin side) is ready to just throw my hands up in the air wildly to my sides in Christ-like fashion and declare, "It is finished". I don't want to BATTLE over this anymore. I didn't WANT to continue the medication in the first place because of the side effects I was experiencing. But now that I've grown USED to the headache/joint pain/fatigue post infusion, I've begun to notice a stabilization in my MS symptoms for the good. I believe the TYSABRI IS HELPING ME...I've embraced the medication...I'm finally feeling as if I am getting my body back.

But at what cost literally? Is my mortgage more important than the medication? I wish, instead of the Biogen label warning on the drug letting us all know we run a 1:1,000 risk of developing PML, they would ALSO add a warning that the medication could result in financial destitution IF YOU HAVE A JOB AND INSURANCE. I thought all this time the purpose of my GOING to my job each day was to KEEP my Gold Card insurance so I could AFFORD the medications that KEEP me GOING to my job...funny how having a job/insurance now does NOT work in my favor...

Hmmm...for having very little to say, I sure spewed a lot here. Guess I'll go to bed and listen to the rain outside. Can't be any more depressing than listening to the negative chatter in my head...

Is My Nose Bent Out Of Joint??...

Leave it to ME to have the most bizarre, freakish, what-I-can-only-deem-to-be-MS, symptoms. Yes, I'm talking about my nose.

For the past 2-3 days, I have developed this increasing sensation that there was a "tickle" in my left nostril. I kept rubbing the end of my nose, blowing my nose, searching for that ROGUE nose hair, trimming what I imagined could only be a ROGUE vibrissae (hoity toity word for NOSE HAIR), and doing microscopic self-inspection of each and every tiny millimeter of my nose. Currently, my left nostril is practically bare from any dust and dirt catching hairs (which are now accumulating in my lungs...the dirt and dust, that is). And still...my NOSE "TICKLES"!!

After practically ripping my left nostril off my face, the sensation began to change to an almost vibrating feeling...and then (but only then, nearly being nostril-less!)...I finally realized. I get this SAME SENSATION routinely in my left shoulder, albeit much more strongly. My nose is now vibrating like my shoulder.

"MS, you dastardly B-Turd!" I cry. "Leave my frickin' nose alone!" I mean geez...just when I thought there might be one or two parts on my body that would be spared neurological insult (like my nose and maybe a kidney).

Multiple Sclerosis makes concessions for no one's pride...

Ooo! Ooo! I Have A Question!!...

The day I stop questioning things (especially authority) is the day I might as well step off the curb into the Big Bus Headlights in the sky.

I received an email last week from a company requesting my participation in a survey regarding TYSABRI (don't worry! I'll reprint everything right here for you to read.). I get email requests for all KINDS of things, which I half expect because I write a public blog about my life with Multiple Sclerosis. And for those of you not in the "know", the email address BrainCheeseMS@aol.com is specifically set only for responses from this blog...I have another private email my "other" friends and family use to contact me. In fact, probably not unlike YOU, I have several email addresses...tis the world we live in.

When I receive an email at the above addy, I can be certain the address was discovered only right here on CHEESE...someone would have to come to this blog to be able to contact me at that address. So, you can imagine my semi-surprise (I feign excitement here) when the above mentioned request arrived to participate in a TYSABRI survey...the *requester* must have lurked here on CHEESE (probably Googling *Tysabri*), noted I am currently accepting this drug, and sent me the email. Small world we live in.

Here is the initial email I received:

Hello.

I came across your website, and wondered if you would be interested in participating in a marketing research study we are conducting. We are seeking to pay people for their time and feedback on a marketing research study about the Multiple Sclerosis - particularly those on Tysabri. I copied the main information below.

Thanks you.

Multiple Sclerosis Marketing Research Study

We are recruiting men and women who are diagnosed with Multiple Sclerosis (M.S.) and are currently on Tysabri or have been on Tysabri in the past.
We invite them to participate in inidividual research interviews with a moderator:
IN-PERSON: at a professional marketing research facility in downtown Boston, Massachusetts or Nashville, TN
BY PHONE: during late August - early September

Your participation would involve one session that will last approximately 1 hour (multiple times are available). You will be paid $200 for your time and opinions.This research is being conducted by a professional marketing research firm Marketry Inc. www.marketryinc.com For additional information regarding this study, please contact the person below. Please include the following information: Your age, Your Current M.S. Medication, Your Prior M.S. Medication (if any), Telephone Number, Name, email. We would like to ask you a few questions to make sure you qualify for our study.Thanks much.
--------------
Mary Ann Smith-Janas
Marketry
ph: 205-802-7252
fax: 205-802-7265
http://www.marketryinc.com

Well, hell...if you've read more than one post here on CHEESE, by now Y'ALL KNOW ME! I, of course, had questions. WHO really wanted to know my opinion (because frankly, opinions are like A-holes...everybody has one...another inherited saying from my mother. sigh) and why??? The scent of Big Pharma wafted in the air.

Soooo...I fired off THIS email in response:

On Aug 13, 2008, at 3:01 PM, braincheesems@aol.com wrote:

Ms. Smith-Janas,

Your email is certainly intriguing. I DO have one question, however, before consenting to your request: Who is your client regarding this Tysabri survey?

Please feel free to email me directly at BrainCheeseMS@aol.com as this is a confidential email address.

Thank you,

Linda D.

I also did a tiny bit of investigative research about the Marketing/Survey company and discovered they ARE a legitimate business. But I still wanted to know WHO in the world would pay me $200 for my opinion? This is what intrigued me the most because, I CAN BE BOUGHT! That's right...pay me enough and I'll whistle *Dixie* out my behind for you if that's the "opinion" you are searching for. LOL It seemed *someone* with fairly deep pockets was willing to pay for my opinion (and obviously the opinion of other MSers on TYSABRI) AND that opinion was WORTH something to them.

I received a fairly rapid reply to my above email:

Sent: Wed, 13 Aug 2008 1:35 pm

Linda, thanks so much for your note. I'm not able to reveal the sponsorship of the research. To maintain the integrity of the research and make sure comments aren't biased, oftentimes our clients request anonymity.

While I can't reveal sponsorship, I can promise that your identity, too, will be anonymous. Your name will NEVER be associated with your comments. Instead, my company puts together a comprehensive report that illustrates the range of stories we heard from participants - WHAT was said, never WHO said what.

The interviews are very conversational in nature and, I think, fun.
I hope you'll consider participating. If not, I definitely understand. Thanks so much for responding to my email! And for creating an interesting and well-written blog! :)

Mary Ann

Top secret? Hmmm...the scent of Big Pharma OR the Republican National Party grew stronger.

Now y'all KNOW what I think of pharmaceutical companies in general...they SMELL funny and we're just never going to be close friends! And y'all KNOW I have "issues" with our health care system in general in the ol' USA. I WILL NOT have my opinion bought to line the pockets of a company CEO who will NEVER IN THEIR LIFE BE FACED WITH THE DECISION TO BUY FOOD/PAY RENT OR PURCHASE THEIR MS MEDICATIONS!!! **Mumble, mumble under my breath**

But, then again, I DON'T know for sure WHO would be behind BUYING my opinion about TYSABRI and, "Mary Ann" seemed nice enough. I made a mental compromise: I would agree to participate in the company's survey, but I would NOT accept what felt/feels like *blood money* for myself...I would turn around and donate that $200-dollar-opinion to THIS organization supporting MS locally in my region. Yes, I WOULD steal from the rich and give to the poor, thus making my Robin Hood-esque *opinion* truly worth something.

But...I STILL had lingering questions...and...I just COULDN'T stop myself. I sent this email back Thursday morning:

Ms. Smith-Janas,

The notion of a Tysabri survey has my interest and I will definitely commit to participation. I don't know what else you might need from me at this time, but since I don't live in the Boston area, I would imagine you will need a phone number to contact me (as well as my FULL name!).

I, of course, have other questions of you/your company if you would be so kind to respond? I realize you cannot reveal the identity of your client, but I am certain other MS blog readers might like to know some of the "ins and outs" of your survey process.

1. For instance, what is the ball park range of COST for your company to complete a survey such as the one you are conducting on Tysabri?


2. Does this estimated cost include the $200 payment to each participant?


3. How many participants do you expect to include in a survey generally?


4. How does the surveyor justify "unbiased" responses in the light of participants being PAID to respond? In other words, how does the surveyor decide which surveys will include a payment to the participant and which surveys do not...or do ALL of the surveys done by your company include a payment to each participant?


5. Do you enter a survey process with a specific "goal" in mind?


6. Does your client provide the questions or justification for the questions you ask?


7. Is each participant made aware of the final outcome of your survey?


8. Will they be contacted directly, or is this information only made available to your client?

These are just a highlight of questions that come to mind about your business and this survey process in general. Thank you for your time and consideration.

Linda D.

**MAJOR SIGH with pining face**

She don't write...she don't call...(well, *she* also *don't* have my full name OR my phone number yet, so that could be part of the communication issue...hehe) I have heard nothing back from Mary Ann (I sort of feel like we are on a first name basis here...can I CALL you that?) and I WORRY I have once again ASKED TOO MANY DAYUMED QUESTIONS!!! **Another big sigh for effect**

Who knows? Maybe my email was lost in the email/Ethernet? Maybe HER email reply was gobbled up by AOHELL and I'll NEVER get any answers? Maybe my questions are just too big to bother with? It's JUST a stinkin' survey after all.

The worst part of my bad habit QUESTIONING? THIS organization loses out...I'll keep you posted...

The Pathology Of Lying...

I recently received an email from a CHEESE reader, who asked, "Why do people lie about their (MS) symptoms?" I asked permission to discuss the context of this question here (while maintaining said person's anonymity), because I think it is the CONTEXT or situation surrounding the reader's question that is most important. The fact is we ALL lie about things in our life...and if you piously try to tell me you don't and have NEVER spread your truth thin, well...let's face it...you're a LIAR. LOL But this emailer's question runs far south of the everyday lies we ALL tell, running right along the line of the pathological. And, since I work in psychiatry, I will attempt (at best) to shed some light on her disturbing experience.

The email I received was regarding a particular "chat" and message board in the Multiple Sclerosis community (which I will not disclose here to maintain anonymity!), where it appears many MSer's go to discuss their current symptoms, find MS friendships, and generally "bond" with each other around the common theme of MS. The emailer has been a member of this community for quite some time and, themselves, diagnosed with MS for just as long.

On this particular MS chat and message board, the emailer met a "new" member who had many questions about MS and generally seemed "lost" in the diagnosis. The emailer (being an old "pro" at MS) decided to graciously lend an ear to this newer member and try to guide them through the maze of living with MS. What transpired AFTER this initial contact was several WEEKS of intense contact, emails, exchanged phone numbers and conversations, plans to meet each other in person, etc. The emailer felt as if she and the new member were developing a solid friendship...having found their initial bond around the common theme of MS.

I will not go into gory details of the rest of this story (because it is just too long to disclose and I will NEVER get to the "why lie?" portion of this post if I do!)...but suffice it to say, after a series of accumulating and strange events (like 911 calls to assist the new member), it was discovered this person did NOT have MS at all! In fact, they most likely had never experienced MOST if ANY of the symptoms and hardships professed on the chat and message board. WHOOT, you say?!?

Interestingly enough, this is really NOT the first time I have heard a similar tale of deception. I know of at LEAST 3 other incidences of very similar circumstances from other MS friends or message boards. Knowing this fact, however, did not calm the emailer's woes...she felt angry, "stupid", and extremely hurt...and thus, posed the question to me, "Why do people lie about their (MS) symptoms"?

This is a very complex question and one that cannot be answered in generalization. And I think the FIRST order of business is to attempt to explain why ANYONE would tell a lie, deliberately deceive another, or not disclose their ENTIRE truth...something each and every ONE of us has engaged in one or more times in our lives, not just John Edwards (and research proves this number to be FAR more than a one time thing for anyone, myself included!).

Most people can identify who they believe to be "everyday liars"...a small list might include lawyers, car salesmen, and criminals/con artists...people who might lie for a living or to meet needs to sustain their livelihood. Somehow in society, we accept this. We KNOW this to be "true" as a general consensus, which is what we base many of our "truths" upon...a general societal belief or consistent pattern of behaviors in a society. For various reasons, we don't QUESTION these liars because we already ASSUME what might be coming from their mouth contains falsehoods! We therefore, as a society, "accept" we will most likely be lied to by these individuals and we put in place safeguards in our psyches, behaviors, and laws when dealing with these individuals directly.

We also, on a very deep level of our OWN ego/psyche, understand and can RELATE to the lies of the above mentioned (and above mentioned being generalized! Please...no emails from lawyers telling me they will now SUE me for defamation...sigh.). We can rationalize this type of lying because we have engaged in it OURSELVES in one form or another.

Most of us prefer to use the watered-down term of a "white lie" when discussing this form of deception. And the word *white* in the description refers to deception for "good". White lies are told when we believe on some level telling our TRUTH (or all of our truth) could be harmful, either to ourselves or another. WE, you and I, tell "white lies" to avoid hurting another person's feelings, to avoid embarrassment, or to reassure another, believing that this type of action is "best" for ourselves or the person involved (as possible rationales)...we, you and I, as a species AVOID pain and painful situations REFLEXIVELY, both physical and emotional in nature. It is a very basic form of survival, taking us from the simple reflexive physiological response to the more complex mental negotiations we make in our brains (psychological) to AVOID pain.

So, can "we" (and as my mother used to say whenever I'd use the word "we" inappropriately, "What? Do you have a turd in your pocket?", meaning myself and my "turd"...) at this juncture accept at face value the generalization that "WE" all tell lies or do I need to continue to beat this dead horse?!? Stop reading if you are in denial about your own behaviors here...this post isn't for you.

In the case of my emailing acquaintance, the person she speaks of fell far out of the boundaries of everyday deceptive/lying behavior. And because of this, the emailer had no basis--no format--to conceptualize WHY or HOW anyone would ever behave in such a manner...she simply could not relate. And this, my friends, is where "white lie" behavior morphs into "black lie" behavior, and is deemed *pathological* in nature. The lying does not fall into our society's accepted guidelines of *lying*.

In my 22 years of psychiatric nursing experience, I have encountered countless examples of *pathological* lying. I have also witnessed OFTEN a feigning of psychological symptoms in which a person "pretends" (or may even believe) or "puts on" symptoms to meet their needs. In my business (of controlling WHO might get admitted to a psychiatric hospital and WHO does not), we (the OTHER collective "we") sometimes refer to this behavior as "looking for three hots and a cot". In other words, the patient/individual feigns psychiatric symptoms to obtain access to a warm bed/shelter and three meals a day...NOT because they need the environment to treat psychiatric symptoms...but because they DESIRE this environment to meet food and/or shelter needs. Again, WHOOT you say?!? Yes, it does happen...frequently. But this is an entirely DIFFERENT topic to be chronicled in magazines such as "Psychology Today", and NOT something that needs to be addressed here. ("Thank gawd", you say.)

If I, as a behaviorist (and I am actually a behaviorist existentialist in my educational background and belief...meaning, I believe ALL behavior has meaning AND sometimes Sh!+ happens!...psych joke, sorry.), can convince you that ALL behavior has meaning, no matter how dysfunctional, I can perhaps form a context for understanding the pathology of lying and *pathological lying* as well. And, if you "can't go there" with me, then the rest of this post is going to be pretty boring.

Generally speaking, theorists believe it is human nature to begin our "lying paths" around the age of 5 or 6 years old. This is the age when most of us mature enough to understand the consequences of our actions, when we also developmentally begin to feel guilt, particularly surrounding issues with our parents or authority figures, and when we are most seeking attention. By the ages of 7 to 8, we tell lies to avoid punishment or to avoid certain tasks. By adolescence, our lying becomes more skilled and complex as we begin to navigate our independence from parents/authority figures and try to establish our own sense of self. It is believed lying is a LEARNED behavior, and for the most part, by the age of adolescence we are capable of feeling remorse...for our actions AND our lies.

When lying or the art of deception becomes *pathological*, is when there IS no remorse or the act of lying is habitual. It becomes pathological when the individual themselves may not be able to distinguish the untruths they tell from reality...in other words, the individual has told so many lies, THEY no longer know where the truth *lies* (pun intended). This is NOT to say, however, that the act of lying or the habit of lying has ceased to meet a need...in fact, quite the opposite is true. The individual must tell more and more lies to maintain the image or facade they are creating to MEET that need...whether it be for attention or some other gain entirely.

So, exhaustively you may ask again, "But WHY would someone lie about their MS symptoms?"

I believe the answer to that question is both simple and complex. Simply put, someone might lie about their MS symptoms or even HAVING MS to meet a need...and generally speaking, that need is for attention or belonging or identity. Those of us with MS know the importance we place upon SHARING our symptoms with one another...we desperately want to know we are not alone with this disease. We very much want to help another who might be struggling with this disease. We often refer to a "club membership" with this disease. We "belong" with each other under the common theme of Multiple Sclerosis.

To someone very much needing a sense of belonging, identity, or attention, the MS Community is a wonderful group of caring individuals...we are both knowledgeable and educated about our disease and most of us have a sense of wanting to help others "get through" the rough bumps of the diagnosis because we have EACH BEEN THERE OURSELVES BEFORE. We understand what it is like to have a hidden disorder that is both illusive and sometimes GRAND in it's presentation. We know what it is like to be "poo poo-ed" (discounted) about strange neurological symptoms and we know what it is like to feel isolated by this disease at one time or another. Imagine the ATTRACTION one might find to a group of MSers when they, for reasons unknown (or extremely complex reasons), have felt isolated, alone, discounted, not belonging, or needing of attention? Wow! They may not HAVE MS, but they certainly can relate to those feelings...but they can't *BELONG* to the MS Community without Multiple Sclerosis.

"But why would anyone in there right mind even WANT to have MS?", you MSer's say. They DON'T want MS...the person wants the attention or sense of belonging to a community WITH MS.

OK...that said, now on to another reason someone might lie about their MS symptoms or having MS. There is a well-known disorder (it's in the DSM-IV Revised, so you can check on me here) in the psych world called, Munchausen's Disease (it is a classified disorder, falling under the scope of factitious disorders). By definition, Munchausen's is a psychiatric disorder in which an individual *fakes* an illness, trauma, or symptom for the very purpose of gaining sympathy or attention. This person will often CREATE a medical crisis or disorder to gain the attention of the medical community (and just to scare you further, there is also Munchausen's by proxy, where an individual will create a disorder in ANOTHER to gain attention...usually parents of small children!). This person KNOWS they do not have symptoms of a particular illness, yet their need for attention is so great, they will feign or even self-impose the illness (sometimes by injecting themselves, beating themselves, and a whole HOST of grueling ways of obtaining an illness). This diagnosis has the primary SYMPTOM of lying...pathologically.

Someone with Munchausen's Disease must choose their illnesses well...or be "found out" by the medical community. They cannot chose to fabricate symptoms of an illness that can easily be detected with lab work, x-rays, or tests, otherwise the medical community will quickly discover the pathology of the lying and their source of attention will cease. Multiple Sclerosis is the PERFECT illness to feign! I mean really...how many of us have struggled to get a definitive diagnosis of MS for weeks, months, or even years?!? And there STILL remains no conclusive test that will absolutely, one hundred percent-ly, PROVE we've got MS percolating in our brains and spinal cords!!! Ta da...welcome the pathological MS symptom LIAR. It could take months or even years for someone or the medical community to *discover* specific neurological symptoms do not exist AT ALL in this individual.

Now, this is NOT to say everyone WITHOUT a diagnosis of MS must be lying about their symptoms...this is also NOT to say the MS Community shouldn't welcome those with loosely defined illness into the fold. MOST OF SOCIETY DO NOT FEIGN SYMPTOMS OF MULTIPLE SCLEROSIS TO GAIN ATTENTION. But, for that very small percentage of troubled folks that do, I am hoping this post will shed some light on the question, "Why would someone lie about their MS symptoms?"...

I'm tired now...I need to go *lie* down...I won't even add, "pun intended" here...

Welcome To My Office...

That's right...I spent the good portion of my work day stuck in our satellite office I fondly refer to as "The Kiln". It is roughly an eight by ten foot room/closet that has no air conditioning (save opening the main door and trying to suck what tiny bits of cooled air that exist from the hallway into the closet!) and is WEST FACING with a west wall of windows...aka, "THE KILN". After only a few short HOURS in THE KILN, my vision failed/blurred, my leg became somewhat numb, and my temper flared to match the near 95 degree air that I was inhaling into my lungs! Talk about working in a sweat shop...LOL.

The best part of my work hours occurred when I was paused at the Mountlake Bridge waiting for it to be lowered (it's one of a couple of opening bridges here in Seattle). It was dusk outside and I was just leaving my second stressful encounter with an angry ER physician for the day (maybe it was the heat here today, or perhaps it was ME that caused other "tempers" to flare in my presence!), when I glanced over at the car beside me in traffic. I did a double, then a triple take. I swear on all that is holy I *thought* the car next to me was being driven by one of those crash test dummies...you know the ones...without hair, flesh toned, and with somewhat of a flat face??? Turns out, on my THIRD look at the "dummy" in the driver's seat, it was just a very sad, ugly bald man!

Time to go cool down in an icy shower and wait for our NW heatwave to pass...before I start seeing "other" things that aren't really there...like humor in this post, for example...

God Bless The Canadians!...

"O Canada, terre de nos aieux, Ton front est ceint de fleurons glorieux."

OK...so I cut and pasted that above line of the Canadian National Anthem because I don't speak French...heck, I barely speak my English "good". LOL But I DO speak Canadian...hehe (or is that "eh eh"?)

Yes, I DID go on another border smuggling adventure this past weekend to visit the United States' lovely neighbor up North. And I am certain by even POSTING this admittance, I will now be on the USA terror watch list (puleeze, my fun-loving American "govmet"...I'm 44 years old, fat, and listless...I can barely pack Purdy's candy across the line, let alone plans for a "Nuk LEE er" attack!).

My partner in crime, Tina, and I try to make it to the beautiful city of Vancouver, B.C., at least once a year for good food, some shopping, and the "Canadian experience". This year's adventure turned out to be almost as fun as last year. We were greeted at the border by a Canadian Customs Official, who asked us the typical "before you enter Canada" questions, except he threw in a NEW ONE, which threw me for a loop.

"Are you meeting anyone in Canada today?"

Now, those of you who know me understand that I am both VERY concrete AND a jokester...these are lethal combinations when dealing with high-ranking officials (like police, politicians, the garbage man, etc.). I immediately flew into a panic by this question. I mean, OF COURSE, we'd be "meeting someone" while in Canada...it's hard to shop or dine WITHOUT meeting someone like store clerks or wait staff...what could this "high-ranking official" be fishing for?

Then it dawned on me perhaps he might have suggestions for WHOM to meet while in Canada for the day? I mean, both Tina and I are single...maybe he had some "friends" he thought we SHOULD meet since I'm certain he recognized two, extremely hot(flashed), older women in the car! I hesitated to pursue this angle just IN CASE I was misinterpreting the line...LOL

I wondered if answering his question WITH a question might be the best approach to gain access to his fine, northern country? Something like, "Do you have any suggestions WHO we might WANT to meet while in Canada?" crossed my mind. But, being the terminally frightened of authority figures person I am, I eventually just opted to reply with a flat "No", in response. I'm certain now my response closed a door to what could have been a VERY interesting Canadian experience (filled with a car search and maybe even an anal probe, no doubt!). We passed across the border without fanfare or notice, except for the downloaded rock and roll version I have of the Canadian National Anthem blaring on the car stereo.

It is amazing the difference one can find in people just by crossing an imaginary line drawn between two countries. MY experience of the Canadian people has always been very positive...Canadians are SOOOO polite compared to my American comrades and Canadians have way cooler money than the cruddy dollar bills that usually bless my hands. I mean, THEY have a "LOONIE" instead of a dollar for gawd's sake!!! How cool is that? Especially for someone like ME who works in psychiatry...

When I am in Canada, I don't have to worry that one out of every 3-4 people I meet on the street "might" be carrying a handgun as is in the United States...since there are only 30 guns per 100 people in Canada versus 90 GUNS PER 100 PEOPLE IN THE USA (making the USA the most armed country in the world). Oh sure, I know the Canadians have their fair share of crimes, but I don't hold that against them. They are just TOO DARNED POLITE to hold any contempt toward...well, except for the recent riot and the bus beheading...but OTHERWISE, I stand firm on my loyalty to the Canadian population and their manners!

Even with Great Britain's influence, the Canadians STILL chose to drive on the "right" side of the road...this is a definite plus when visiting the country. LOL And they post EVERYTHING in English and in French...just in case I might decide to LEARN French (or English, for that matter), I can count on my friends to the North providing me with ample opportunity. They prefer vinegar on their "chips" versus ketchup (which I think is REALLY a bit odd to call French fries "chips" in a French-speaking/bilingual country, but who am I to point a finger...). And best of all, the Canadians are still LIKED by most countries around the world (unlike my citizenship nation). Why? BECAUSE THEY ARE SO DAYUMED POLITE!!!!

So, hats off to my dear peeps in the Northern Frontier...you are a delightful group! And I hope you will STILL allow me access to your country once a year...even AFTER reading this post... :-)