Magically Funny...

I wish I had something I could pull out of my, ah...HAT...that would even remotely resemble "funny"...but alas...I am simply too tired to find humor in much these days. I'm even having trouble updating the 131 Blog Link List over there that Lisa of Brass & Ivory so graciously left comment about in the previous post...just can't seem to find the strength to sit at the computer and THINK.

I've almost completed putting away the STACKS of things unloaded from my car after the MS150 weekend...almost. I think I wore myself out working and trying to prepare for the event and now I pay the price...drooling on the couch and unable to formulate one complete thought!

I resumed my battle cry with Club Med regarding the cost of my Tysabri infusions on Tuesday...have to always keep them on THEIR toes lest they forget I mean business. And I taught a half day class on Monday at work...in what felt like a completely unprepared circumstance. My speech remains "halting", which is concerning me, and my left leg continues to remain "heavy"...log-like...unforgiving. And...I'm tired.

So on THAT note, I think I'll retire to my bed and try to regain some of the sleep I've misplaced over the past month. Here's hoping tomorrow I wake up LAUGHING!...

They Keep Rollin' Into Town...

Yet another two MS Blogs/pages to add to the side bar over there... Chemo Is Not A Pony , by Xenu, and Taking Control Of Multiple Sclerosis , by...well, I'm not sure on that last one! The email I received didn't provide a name, only a link.

We're now at 131 MS Blogs here on CHEESE link and all I can think is, "STOP IT!!!!!" Sigh. Not the bloggers sending me the links to THEIR blogs, but the disease itself. Just stop it...

I Joined the MOOvement...

Sorry...I've been away Joining The MOOvement at the regional MS150 for the past 3 days. Be back soon! (Or at least as soon as I can get my car unpacked and once again find my a$$ with two hands and a mirror, which I can't locate now!)

Another One Joins The Neuro "Short Bus"...

Man O' Man, but our "special" little neurology bus is getting full! Meet Colleen, from Pedestrian Crossing ...#129 over there on that growing list of MS Blog links. And I am groovin' on the fact that Colleen is a "homey". Yup...H-TOWN! HOUSTON...or, pronounced *U-ston*, if you're from them there parts.

You'd think after 12 years of living in Seattle, I would eventually begin to refer to THIS place as home... :-)

Iraqnophobia...Fear Of Expressing An Unpopular Opinion About The USA Occupation in Iraq...

Hehe...well, NO. This post is NOT about Iraq or any other far off land. Of course not...BrainCheese has and always WILL be solely about moi...the country of CHEESE. Where I am ruler, except for a spider or two!

I'm talking about arachnophobia or an unpleasant fear of spiders.

**EXCUSE ME FOR A MOMENT HERE WHILE I INSIST SHAUNA FROM CANADA READ NO MORE AS THE CONTENT OF THIS POST WILL MOST LIKELY BE COUNTER-DISTURBING**(She LOVES those darned bugs)

I mentioned before on CHEESE I have some *peculiar* fears...like clowns and glass eyeballs and...but, I digress. Let's stick to the topic. SPIDERS. I have an "unpleasant" fear/association with spiders...those fury little creatures that hide out in dark places and leave their web calling cards around my house and flower beds. I have no real clue WHY spiders *bug* me so much (LOL)...they just do. And I AM one of those hateful people that WILL squish a spider in my home rather than gently catch it and *rescue* it to back to the outside world. I suppose because of this, I have really bad spider karma.

I have fears that, because I HAVE squished a few spiders in my day, the army of spiders that exist in the world have probably spread the word amongst themselves...and one day I will be snared into a giant spider web and eaten for lunch. (I DID mention I have *peculiar* fears!)

Spiders see me coming and they tend to cop a mean attitude...I guess when it's a life or death situation (which I believe most spider encounters are...for ME anyway), it becomes survival of the fittest and the spiders I've done battle with often put up a good fight. They are, after all, much faster than I am and far more agile. And they DO have that neat little trick of shooting web out their butt and quickly descending from any location. Sometimes, I am jealous of this spider ability...but again, I digress.

When I was a kid growing up and sharing a room with my two sisters, I can recall vividly the chaos that would ensue whenever a spider was located on the ceiling of our bedroom. Often times, this spider radar process would occur when we were laying in bed looking up at the ceiling. Suddenly, there would be a shriek, then a cry out to our mother: "Mom! There's a spider on the ceiling and it's three squares over then straight down!!!" We had a tiled ceiling in our bedroom, so this type of talk was an exact location of the spider before it would be right above our head(s)...sort of like a call out in the game of *Battleship*. We anticipated if mother only KNEW how close we were to spider danger, she might come running. LOL

As an adult, I've had to do my own battle with spiders on my ceilings...there's no one here but me to remove the beasts and the P.O.D. (Princess Of Darkness, aka, the cat) only chases and torments them, eventually letting them go when she grows tired of the play...so they can wind up in my shoes or some other gawd awful place where I can have a full coronary arrest upon DISCOVERING them. AND, I think the spiders are most likely pretty pissed off at that point too, having been relentlessly pounced upon by the P.O.D.

So, WHY am I talking about spiders here? Yeah, I thought you'd be asking that (why do I talk about ANYTHING here?!?). Because last night, as I wearily gimped my way into my bed and prepared my exhausted body for sleep, the radar began beeping, and I spotted an arachnoid on my ceiling in the far corner of my bedroom! SOUND THE ALARMS. If there's anything I fear/hate the most, it is a spider in my sleeping sanctuary.

I have, in the past, tried unsuccessfully to *knock* spiders down from my bedroom ceiling by balancing precariously on my bed with a slipper in one hand and a stick in the other. This trick usually results in me KNOCKING the spider directly onto my bed and once (EEEWWWW!), even onto my own head! So, I've pretty much given this up...it's simply not worth the risk of cracking my own head open on my dresser when I fall OFF my bed doing the "spider dance", trying frantically to knock the buggar off my BODY. Not that I've done THAT before...hypothetical example...maybe. :-)

So, I lay in my bed last night watching my spider intruder on my ceiling...for a very long time...like SO long a time, I think the spider caught on to my stare and tried to play dead for 20 minutes. It never moved. And still, I "watched" it. Eventually becoming so tired, I finally dozed off to sleep...with my bedside light ON of course.

At some point in the night, I awoke from my usual 3-4 hour nap and was startled to discover my bedroom light was on. This was almost as alarming as oversleeping an alarm. It took me several moments to regain my thoughts and travel out of my sleep cloud before I remembered I had obviously fallen asleep without shutting the light off (because my first thought was wondering WHO had sneaked into my bedroom while I was snoring like the roar of Niagara Falls and TURNED my light on!)...and then...THEN, I remembered the spider!

My glasses were still perched on my nose so focusing my eyes was not a difficult task...I fired my radar into the corner where the *beast* had last been spotted, only to discover IT WAS GONE. OMG! I had fallen asleep on my crucial watch and now there was a spider stealthily roaming around my bedroom somewhere. I frantically scanned the four corners of my bedroom and with horror discovered the *beast* was nowhere to be found. I was truly in spider hell.

I eventually DID fall back to sleep last night, but not without frequently feeling like something was crawling across my face or my arms...I think I even DREAMED about a spider attack. It was akin to a nightmare.

Tonight as I lay here typing on the laptop from my bed, I've been keeping one eye on the screen and one eye on the ceiling...just in case...just in case my fury little friend decides to return. I don't know which would be worse at this point...SEEING the spider again and knowing it's location or WONDERING where the little devil might be?!?

I truly AM Little Miss Muffet...but I can honestly say I have never had curds and whey.

BrainCheese Drive By's...

I've typed about this before, but I just can't help mentioning it again...I am always AMAZED anyone comes to this site to read my blathering c-r-a-p! But even more *interesting to me* is, where all y'all come from to GET here.

By and large, the TRUE majority of *hits* here on CHEESE still come from the Jesus Campers...well over 1/4 of the daily drive by's here are STILL those curious folks looking for pictures from the movie, "Jesus Camp". Either that or, they are searching for a picture I posted over a year ago of a 7-week old fetus in connection with a RANT I wrote about the above movie.

There remain the handful of image-searchers looking for "MS brains" and "Spinal MRI" photos (of which, I seem to accumulate MANY of these such pictures via frequent rolls in the tube) and I'm happy to oblige these folks...I remember when I was also searching for ANY information about MS lesions. Of course, MY search was mainly to find an MRI that looked like mine that WASN'T diagnosed with Multiple Sclerosis just to prove my neurologist wrong!

There are the people who drive by with related hits for *Cymbalta*, *thyroid and MS*, *grinch wear*, *Trevis Gleason*, and the ever popular *what's my stage name*. I tend to worry about the people who keep frequenting THIS blog to figure out their "stage name"...I mean seriously. Are there REALLY that many confused exotic dancers out there lacking an identity?!?

People sometimes LINK to this blog and I have no idea who or what they are about...I also tend to back track on these *hits* just to make sure my upstanding CHEESE name is not being slandered (but then again, it would probably take a lot to qualify as *slander* for me to take offense...mostly because anything derogatory about me is PROBABLY true! LOL).

Tonight I was cruising my stats and sorting through the gazillion JESUS CAMP hits, when I came across several track backs to a website called, "Patients Like Me"...just because I have experienced some irritation with these folks, I'm deliberately NOT linking them here (you can find them yourself by typing the dubya dubya dubya dot PatientsLikeMe dot com...neener.). But, suffice it to say, there is a 19 page comment forum going on over there about Tysabri and CHEESE was linked within someones comments. "Why?" you ask. Well, there is talk going on about the high cost of Tysabri infusions (and if you are taking Tysabri and HAVEN'T shared your information with Lisa at THIS link, get on over there and do as you're told, dammit!).

Which causes me to segue into what may become my OWN drive by at Club Med regarding my Tysabri infusions (it's all connected here...seriously...LOL). I sent yet another email to Madam Administrator this past week, asking for an update on the unending saga and tale of woes. She DID reply in a timely manner and let me know the *heads of state* at Club Med would be meeting on September 19th to discuss the many questions/concerns I have posed to them. I worry what this REALLY means is "they" will be discussing how to use their giant health care fly swatter and slap me down...sigh. But, I will remain *hopeful* (which really means cautiously waiting for a shoe to fall) this is progress.

And, speaking of being "slapped down" (yet another loosely related topic), my sleepless/stressful adventures of this past week seem to have landed me in some new, unchartered MS waters. I awoke (after FINALLY sleeping...I had been awake for almost 36 hours due to working a night shift and an inability to sleep during the day) on Friday with a heavy and numb left leg (NOT unchartered MS symptom for me) and, when I tried to have a conversation with someone, my speech was suddenly halted. WTF??? I became overcome with an inability to *word-find*. And let me tell you, for someone who NEVER SHUTS UP, this was/is most distressing!!! My brain would think a word, but when I would try to speak it in sentence, something totally different would come out...often times, a word with a similar *sounds like* or beginning with the same letter of the word I wanted to say. I STILL am experiencing this, although to a somewhat lesser degree...but my halting stutter is quite noticeable to me. It was strange because, later in the early afternoon, I also developed a bad headache and diarrhea (but NOT of the mouth for once). Feeling quite alarmed by the entire ordeal (and secretly WISHING I might be developing PML from my Tysabri...because I am not one who is clinging desperately to life...hehe), I decided to do the only sensible thing and that was to just go back to bed and hope if I WAS having a stroke, Baby Jesus would take me in my sleep! Sure, some might argue the "sensible" thing would be to immediately call Dr. She Who Will Not Be Named...but why have TWO people worrying at once??

I proceeded to sleep most of the day Friday and when I finally awoke again, I felt much better. The headache had subsided and the lava flow from my hind end had receded. I still am having word finding difficulty and my left leg remains heavy, but my overall health seems stabilized again...oh, and I'm pretty sure I DIDN'T have a stroke nor have I developed PML...sigh. I imagine I have once again pushed myself over an edge of activity and now I must pay the price...or, an even better explanation is, I probably picked up a "bug" somewhere in my travels of licking emergency room floors in my job (and before you ask, "no", I DO NOT really lick the floors...I'm just IN ER's a heck of a lot).

So, in an attempt to pretend to take better care of myself (**bats eyelids with innocent look**), I need to close this post and go do a *drive by* on my bed. I can hardly WAIT for whatever exciting MS situations might confront me tomorrow (OUCH! I just bit my tongue while placing it in my cheek and typing THAT last line of ca-ca)...

Have I Missed Anyone?!?...

#126...I think. I've lost count at this juncture! Here's the latest to add to the list: MS. ME , who BTW, appears to live in Pearland, TX, WHERE I USED TO LIVE AT ONE TIME (very southern suburbish town south of Houston)...who knew there were so many of "us" around?

If I've somehow "missed" adding your MS blog to the link over there, drop me a line and perhaps swear at me or something so I'll REMEMBER to type you in!

**And no sooner had I posted this one, I received a comment from Nina at Planning The Unpredictable--Living With Multiple Sclerosis , letting me know that YES, in fact I HAD missed one! And another local Seattlite to boot...sigh. OK, #127!!! (and she didn't even swear at me so I'd remember to list her)**

**Thanks Kimberly, for making yourself #128 addition to the list at My Journey With MS--Kimberly . You've been added to the ranks!**

Out of The Frying Pan And Into The Fire...

If this keeps up, I'm going to eventually have to change my original blog post of "Looking For 100 MS Blogs" to "Been There, Done That"! Yes, that's right...no sooner do I start out a post welcoming (is it really "welcoming" when talking about having MS?!?) Bald Ben to the ranks, I have to turn around and *welcome* two MORE MS bloggers to the congregation (That would be the Church of Immaculate Deception).

Please welcome TippyTopple and No Empire No More to the podium...and of course, into the FIRE of MS...

**And a late addition to this post is Jen's MS Blog , who just let me know about HER blog in the comment section of this post. Since she makes the 125th addition, I imagine a PRIZE is in order!**

Bald Is "In"...Just NOT On Britney!...

I'm talking about Bald Ben , the latest addition to the now 122 MS blog links over there to the left! Take a moment and check him out...and so it goes. Another unfortunate joins the ranks of Multiple Sclerosis.

Whew...I'm as tired as a Spring bull in a stock yard of heifers. Beat. Spent. Worn down to a nub. Only wish my exhaustion had even the SLIGHTEST bit to do with "springtime" activity. LOL

Unfortunately, my weariness comes from running too far on a gas tank of fumes this week. My sleep remains at best, "disturbed". I continue to average about 3-4 hours per 24 for unknown reasons. I've been dealing with increased body aches/neck ache for quite some time now, so I just can't imagine my ENTIRE insomniac issue is solely from a stiff neck waking me EVERY night...although, it HAS been doing just that.

I'd like to say I've oddly grown "used" to functioning on little sleep, but I worry that (in itself) is just the sleep deprivation talking crazy. LOL I DID finally email Dr. She Who Will Not Be Named to *consult* (which really means, I state the problem, she offers solution, I quickly shrug off solution and consult my psychic, Dionne Warwick instead). She suggested I try a "toddy" combination of muscle relaxants, but added "just be careful not to knock yourself out". I thought this a strange thing to say, given my GOAL is to *knock myself out* for a bit longer than 4 hours!?! I emailed back, suggesting if she hadn't heard from me in a week or so, to send someone over to check on me and make sure my cat isn't gnawing on my lifeless body. :-)

I spent the majority of my waking hours today (all 20 or so of them) planning, preparing, and running the streets of Seattle in preparation for the upcoming MS150 Bike Ride next weekend. Yes...sigh...I have once again been *drafted* as the "Tent Marm". Only this year, the riders have TRIPLED in numbers on the team. And NO, I did NOT know this when I was being sweet-talked into the role again. So much to do, so little time. And I am FAR TOO OCD for events such as this! I've even contacted the local MS Society Chapter sponsor to inquire about recycling at the event (which, I'll have you know, ISN'T happening! WHOOT, you say?!?). It's these type of details that run my brain on overdrive.

Did I mention I am also slated to work an overnight shift tomorrow? No? How could I have possibly forgotten THIS little piece of health-altering information?!? Nothing like the mentally ill at 3:00 in the morning...and that's just the night staff at the local ER's...never MIND the patients I'll be dealing with. LOL I have exactly ONE day off next week before heading to the MS150 Ride (yes, I AM working straight through the week until next Wednesday). Cruel and unusual punishment if you ask me...but you DIDN'T ask me, so...

If I make it to Monday the 15th, I may be looking like ol' Brit up there in the picture...bald and with crazy eyes...having pulled out my own hair by then (the *crazy eyes* come naturally for me!)...

THE CHEESE STANDS ALONE...

Or at least it FEELS that way much of the time...standing alone.

As the holiday weekend draws to a close, Tuesday rapidly approaches. Here in the Northwest, kids will be returning to school tomorrow and businesses will reopen to their customers. The sun will rise again (somewhere!) as will I...and I will resume my usual weekly activities of work, rest, dealing with Multiple Sclerosis, fighting insurance battles, preparing for the tent once again for the MS150 Ride, and an assortment of other "life" duties that happen here in CHEESEWORLD.

There is no Mr. or Mrs. CHEESE to help out with household chores, to earn a living, to pay insurance premiums, to feed the cat, to mow the lawn, to buy groceries, or to scrub the toilet bowl. Only me...the Lone CHEESE.

There is no adult child or extended family nearby to drive me to appointments, to place a washcloth on my forehead when I feel ill, to bring in my mail, to wash my windows or vacuum my carpets, to prepare my meals or wash my dishes, to do my laundry. Only me...the Lone CHEESE.

There is no team of lawyers standing by, no insurance advocate, no "big guns" from a SOCIETY organization who shall remain nameless, no pharmaceutical drug program, and no investigative journalist to hand over my TYSABRI billing fight to. Only me...the Lone CHEESE.

Yes, sometimes...a LOT of the time...it feels like THIS CHEESE stands alone. That is why this blog has become such an important "tool" in my life. I read your comments and private emails (as well as swing by YOUR blogs for a cup of tea and a read) and the many well-wishes you graciously send my way. I feel a bond of sorts with each of you as we share our struggles with MS and plain ol' living in general.

I have followed Lisa of Brass & Ivory around the Blogosphere (yes, Lisa...even to HgStern!) as she has been working behind (and in front) of the scenes to solve the mystery of the high cost of Tysabri infusions. I have laughed AND wept til near hysteria reading BLINDBEARD as she lays life on the line in a twist of humor and brazen directness. I have read with anticipation the Fingolimod trials of Jeri as she (in only a way that SHE can!) walks us all through neurotic tales of FTY720, exposing us ALL to what each of us thinks at times, but are too chicken to say out loud! I have read the beautiful prose of Merelyme as she tells the secrets of the heart in a life with MS and depression. I have straightened my stance and held my head higher witnessing the many accomplishments of Shauna as she inspires me to remember what I CAN do versus what I can NOT. I have been comforted by the wisdom of Anne and her medical expertise (since I only PLAY a doctor on the Internet and she really IS a Physician's Assistant!) as well as her, "been there, done that" experience. I have been mesmerized and brought to my knees by the beautiful creations of both BUBBIE and Michelle -- artists still creating wonderful works even WITH MS gnawing at their hands and eyes. I have been entertained as if talking over the fence with a neighbor by Joan , who has a knack for taking the simple things in life and weaving them into heartfelt tales. I have watched with joy as Zee sorts out her place in the physical and financial world...keeping me laughing through pictures and tales (tails) of Rennie and faceless/nameless friends. And I must admit, I cheer every time Tricia provides reading that is far better than WATCHING the television show, "The Office"...well, and the fact she occasionally swears in her typing, too. :-) And when I need a break from all the Multiple Sclerosis talk, I turn to Penny Ann , who has an uncanny ability to make even BREAST CANCER funny...or at least HER fund raising events for that cause anyway (And stop stealing OUR MS donors, you PiNK Pigs! LMAO).

There are a HOST of other MS blogs and other blog reads (see the links at the side bar to name a few) I peruse on a regular basis and I feel somewhat guilty leaving them out up above (like Kim and Chris and Jaime and Pb and Shawna and Mdmhvonpa --what IS his real name anyway?!?). There are just too many of you to name here and there is nothing deliberate about me not mentioning your blog...I'm just too tired to continue to cut and paste links! Which brings me back to the post title...

Yes, sometimes...MOST of the time in world outside my door...this CHEESE does stand alone. But I am comforted in knowing EACH OF YOU are only a keystroke away if I choose to step outside of THIS world and enter my "other" virtual world. Inside this computer screen, we ALL stand together...

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...