National Disability Employment Month...USA Style...

Well, Fiddle e dee! Who KNEW that those of us diagnosed with Multiple Sclerosis not only got that ONE week in March (known as "National MS Awareness Week") to be recognized for *gettin' our gimp on*, BUT...we also qualify for the entire month of October. That is, IF you have MS and are gainfully employed. That's right...October IS National Disability Employment Month in the United States. Who KNEW? Well...ahem...I DID.

Unfortunately, the problem as I see it with dedicating an entire month to the employed disabled is this: MOST EMPLOYERS DON'T EVEN KNOW THE DESIGNATION EXISTS!!! Doh. So, I'm here to spread the word...to limp PROUDLY to work...to celebrate the one month of the year where I can hold some distinction in my job. As the designated office gimp (not to be confused with the designated office "chimp")...sigh.

I'm also here to provide a tiny bit of CHEESE education about employment and disabilities...cause that's just what I do. Condense all knowledge from Wikipedia (my online medical and legal advice guru) into one simplistic, no-more-than-six-letters-in-a-word sentences...in HONOR of National Disability Employment Month. But first I must clearly state my disclaimer (because I just KNOW there are those of you out there that hang on my every word and construct your entire lives around the ramblings of a functional idiot such as myself):

**I am NOT an attorney nor do I represent any branch of the government capable of providing legal advice in the area of employment law and ADA law. I only PLAY an attorney on the Internet, much the same as I PLAY a doctor here. Please seek legal advice from someone with ATTORNEY behind their name on a business card and do NOT rely on CHEESE or information here to make important life decisions**

Mkay...that said, let's talk about disability law in the United States...because there IS one and it's very important to the employed disabled.

In 1990 (yes, it took THAT long to become recognized!), the AMERICANS WITH DISABILITIES ACT was signed into law. What this Act essentially did was, "prohibit discrimination against people with disabilities in employment, transportation, public accommodation, communications, and governmental activities. The ADA also establishes requirements for telecommunications relay services." The Act finally established a leveling of the playing field when it came to hiring, keeping, and firing a disabled employee...something that was prior done at random by employers and at their own judgment. (And I'm only going to focus on the "employment" aspect of this law, but it DOES cover everything from WHY there are disabled stalls in public bathrooms, too.)

So, you may be asking yourself, what's a "disability" and, just because I have Multiple Sclerosis do I QUALIFY for recognition under this Act?

The Federal government defines a *disability* as, "An individual is considered to have a "disability" if s/he has a physical or mental impairment that substantially limits one or more major life activities, has a record of such an impairment, or is regarded as having such an impairment." The Act goes on to provide examples such as, "ADA applies to persons who have impairments and that these must substantially limit major life activities such as seeing, hearing, speaking, walking, breathing, performing manual tasks, learning, caring for oneself, and working. An individual with epilepsy, paralysis, HIV infection, AIDS, a substantial hearing or visual impairment, mental retardation, or a specific learning disability is covered, but an individual with a minor, nonchronic condition of short duration, such as a sprain, broken limb, or the flu, generally would not be covered.The second part of the definition protecting individuals with a record of a disability would cover, for example, a person who has recovered from cancer or mental illness.The third part of the definition protects individuals who are regarded as having a substantially limiting impairment, even though they may not have such an impairment. For example, this provision would protect a qualified individual with a severe facial disfigurement from being denied employment because an employer feared the "negative reactions" of customers or co-workers."

There you have it. Yes, Multiple Sclerosis fits under the category of "disability" because MS is considered a chronic neurological disorder with unknown course or duration, creating periods of temporary or permanent neurological dysfunction over the course of an individual's lifetime. Whether or not you are currently exhibiting symptoms of your MS in your employment does not matter...the fact that you HAVE or COULD again qualifies you for membership under ADA law. But don't take MY word for it! Here's another snippet from the ADA website about qualifying individuals: "A qualified individual with a disability is a person who meets legitimate skill, experience, education, or other requirements of an employment position that s/he holds or seeks, and who can perform the essential functions of the position with or without reasonable accommodation."

OK, now we get into some vague CHEESY interpretation of the Act that involve pre-employment issues. For instance, can an employer DEMAND or even INSIST you declare your disability prior to hiring or in a job interview? The answer is NO. They CAN ask, but you are not obligated to TELL. And they can ask as it pertains to other Federal laws (such as the Rehabilitation Act of 1973, which allows employers to "invite" individuals to disclose their disability for affirmative action purposes...and of course Veterans might also be eligible for OTHER services if they disclose on the job application.).

So, you're filling out that lengthy job application that you're most likely going to "boost" your work history on anyway, and you begin to wonder, "What if they make me take a physical before they will hire me OR they demand to see any of my 500 volume neurological records at my neuro's office? Crap! What now?!?"

The answer is simple. YOUR POTENTIAL NEW EMPLOYER CANNOT DEMAND YOU TAKE A PRE-EMPLOYMENT PHYSICAL BEFORE MAKING A JOB OFFER, NOR CAN THEY DEMAND MEDICAL RECORDS. Again, a quote directly from the ADA webpage themselves: "An employer may not ask or require a job applicant to take a medical examination before making a job offer. It cannot make any pre-employment inquiry about a disability or the nature or severity of a disability. An employer may, however, ask questions about the ability to perform specific job functions and may, with certain limitations, ask an individual with a disability to describe or demonstrate how s/he would perform these functions." But beware as you are NOT out of the woods just yet. Once you are OFFERED the job, an employer CAN "condition a job offer on the satisfactory result of a post-offer medical examination or medical inquiry if this is required of all entering employees in the same job category."

So, you landed that job you've always dreamed of having (for me, that would be selling lumber at Home Depot...to each his own!). And now you are employed, either knowing you have MS and will need special considerations or you get DIAGNOSED with MS while employed. What now? Say you've been functioning in your job, but MS (being the rotten thief it is!) has given you symptoms that are making your performance difficult and you are worried you're going to have to QUIT your job because you can't keep up?

This is where the ADA also steps in and says, "Whoa, wait a minute. Is this an employee who COULD continue to meet the requirements of their job IF a bit of tweaking to the requirements or environment of their job were to occur?" That *tweaking* is called "reasonable accommodation". And reasonable accommodation is defined as, "Reasonable accommodation is any modification or adjustment to a job or the work environment that will enable a qualified applicant or employee with a disability to participate in the application process or to perform essential job functions. Reasonable accommodation also includes adjustments to assure that a qualified individual with a disability has rights and privileges in employment equal to those of employees without disabilities."

What does THIS mean and when should I ask or expect my employer to provide "reasonable accommodation"? Out of the mouth of the ADA, "An employer is only required to accommodate a "known" disability of a qualified applicant or employee. The requirement generally will be triggered by a request from an individual with a disability, who frequently will be able to suggest an appropriate accommodation. Accommodations must be made on an individual basis, because the nature and extent of a disabling condition and the requirements of a job will vary in each case. If the individual does not request an accommodation, the employer is not obligated to provide one except where an individual's known disability impairs his/her ability to know of, or effectively communicate a need for, an accommodation that is obvious to the employer. If a person with a disability requests, but cannot suggest, an appropriate accommodation, the employer and the individual should work together to identify one."

Reasonable accommodations can include ANYTHING from reduced work hours, special chairs, pencils, lights, built in break times, computer equipment, etc. It all depends on another term from ADA law called, "undue hardship", and whether or not your request for reasonable accommodation might create this on your employer: Undue Hardship.

ADA defines "undue hardship" under these guidelines: "Undue hardship" is defined as an "action requiring significant difficulty or expense" when considered in light of a number of factors. These factors include the nature and cost of the accommodation in relation to the size, resources, nature, and structure of the employer's operation. Undue hardship is determined on a case-by-case basis. Where the facility making the accommodation is part of a larger entity, the structure and overall resources of the larger organization would be considered, as well as the financial and administrative relationship of the facility to the larger organization. In general, a larger employer with greater resources would be expected to make accommodations requiring greater effort or expense than would be required of a smaller employer with fewer resources."

But your employer isn't out of the woods just yet by claiming the "we can't afford it" route. The law goes on to say, "the employer must try to identify another accommodation that will not pose such a hardship. Also, if the cost of an accommodation would impose an undue hardship on the employer, the individual with a disability should be given the option of paying that portion of the cost which would constitute an undue hardship or providing the accommodation."

Now, say there's just a part of your job you don't LIKE to do AND you have MS and think this might be a plan to get out of doing the unpleasant. Can you ask to have the task removed from your workload and make Joe Slacker over there do it instead, sighting ADA law? Ah, NO! And not only does your employer NOT have to remove certain tasks of your job from you because of a disability, it can (and will) hold you just as accountable for COMPLETING the tasks of your job WITH REASONABLE ACCOMMODATION. Interpreted, this means you STILL have to be able to perform the basic functions of your job to stay employed with or without reasonable accommodations.

Can you be fired from your job if your employer says you pose a risk to the health and safety of you or your workplace because of your disability? Well, yes AND no. " The ADA permits employers to establish qualification standards that will exclude individuals who pose a direct threat -- i.e., a significant risk of substantial harm -- to the health or safety of the individual or of others, if that risk cannot be eliminated or reduced below the level of a direct threat by reasonable accommodation." HOWEVER..."an employer may not simply assume that a threat exists; the employer must establish through objective, medically supportable methods that there is significant risk that substantial harm could occur in the workplace. By requiring employers to make individualized judgments based on reliable medical or other objective evidence rather than on generalizations, ignorance, fear, patronizing attitudes, or stereotypes, the ADA recognizes the need to balance the interests of people with disabilities against the legitimate interests of employers in maintaining a safe workplace."

What the above paragraph CAN be interpreted to say is this: An employer, does have the right to send you for medical evaluation to an outside medical party (usually slimy doctors PAID by your employer to render whatever decision the employer wishes to impose upon you...but I digress) for the purpose of obtaining "objective medical data" to support their claim YOU pose a risk to health and safety in the workplace. NO...they do NOT have to rely solely on your private physician's opinion and generally WON'T allow your doctor to have the final say. All I can say here is, BEWARE OF THE EMPLOYER WHO WANTS TO SEND YOU TO AN 'INDEPENDENT' NEUROLOGIST OR PHYSICIAN TO HAVE YOU EVALUATED. THEY CAN BY ALL RIGHTS DO SO AS A CONDITION OF CONTINUED EMPLOYMENT, BUT BY NO MEANS IS THIS PHYSICIAN TRULY INDEPENDENT...THEY ARE BEING PAID BY YOUR EMPLOYER!!

Just to show off here (because there is usually so LITTLE I know ANYTHING about), I think it is also important to recognize on September 25, 2008, the ADA was amended and the amendments will go into effect January 1, 2009. The majority of the amendments are just legalese clarifications for the EEOC (Equal Employment Opportunity Commission) to follow. But the one GLARING addition to the amendments which directly relates to Multiple Sclerosis is a new definition: clarifies that an impairment that is episodic or in remission is a disability if it would substantially limit a major life activity when active. HELLO?!? Can anyone else scream MS here?!? The law finally recognizes MSers specifically without SAYING Multiple Sclerosis!

If you are interested in doing what should be deemed NECESSARY FACT CHECKING about any of the information I have plagiarized or quoted here, I offer you these sites for follow up:

Notice of 2008 ADA Amendments

US Department Of Labor

US Office Of Disability Employment Policy

US Equal Employment Opportunity Commision

US EEOC Disability Discrimination

So, in the spirit of National Disability Employment Month, I say to all of you employed MSers out there...LET'S GET OUR GIMP ON! And perhaps this month is also a great opportunity for some door opening with YOUR employer on what it is like to remain GAINFULLY employed AND have a disability? I know I will certainly be educating MY employer whenever possible...

Updates And Changes To The Blog Roll...

Only because Lisa, over at Brass And Ivory , inadvertently SHAMED me to death, have I FINALLY worked my way through the "Links To 128 MS Blogs (to suck your time)" over there. If you are an anal reader of CHEESE, you have already picked up on the numerical change in the link...yes, that's right...just yesterday it said 131! Well, I've done some necessary editing, weeding out blogs that no longer exist, AND adding some new ones. Here's the list...

I removed (either because the blog is gone or the link is broken):

A Blessed Mess

A New Beginning

Angst On A Shoe String

Dissonance

H, H, and H

MSToolKit

Multiple Sclerosis Blog

Multiple Sclerosis::Main Page

One Life

Sharing Our Days

Shift In Action

The Jaws Of My Life

The Ramblings Of An Idle Brain

What MS Is To Me

Now, if you are the AUTHOR of one of those blogs and you've somehow been removed in error or changed your link, send ME a link so I can update you and re-add you back to the mix.

I have added new (and some that have been around a while) blogs:

Carnival Of MS Bloggers

Carole's MS Blog

Chain Reaction

Grand Moments

Hazel Is In The Eye Of The Beholder

Living & Coping With Multiple Sclerosis

Mark And MS

My Life And Dealing With MS

Perspective Is Everything

The Lemon-Aid Stand

Vern's MS Fight

Interestingly enough, one must be "invited" to read It's Not All In My Head-It's In My Spinal Cord A Little Bit Too and Jenn's Journey With MS . I don't think I've made it on that "invite" list, but maybe YOU have!

So, if you run across MORE MSers out there in the blogosphere that I've missed in this list, please drop me a line (best to tell me in an email as I sometimes don't get back to comments) and I will happily add them, too!

Outwit, Outplay, Outlast...SURVIVOR MS...

Ever feel like you're on that game show 'Survivor' with your MS? I guess it's not really a game show as much as it is (now classified) a "reality TV show". Although I'd beg to differ on what is exactly REAL about a group of idiots being dumped somewhere in an alleged remote area, eating worms and burying their own poop, while an ENTIRE TV CREW IS STANDING BY WATCHING?!? I think KNOWING there are people underfoot sent with you SPECIFICALLY to rescue one's sorry arse should trouble arise, really diminishes the true reality of having to *survive*...but I once again seriously digress. :-)

I went to the hospital today to visit our dear friend, Trevis , from HealthTalk (told you I'd work that 411 into a post, Mr T.!)...he's recovering quite nicely from a very serious operation that knocked the wind out of him like a move on the WWF (World Wrestling Federation...ahem). And I'm pretty sure I am not talking out of school when I say, it was BECAUSE of his MS the surgery had to take place at all, although the surgery was not ABOUT his MS...rather a condition resulting as a *byproduct* of the crappy disease and treatment.

In the famous words of Gilda Radner in character as Roseanne Roseannadanna, "It's all aways sumpthin"...although I don't think she was talking about MS specifically! But it IS true...it seems like with MS, it is ALWAYS SOMETHING. If it is not the symptoms of the disease itself, it is secondary or tertiary diseases CAUSED by MS that try to bring us down...or it can even be life circumstances/employment circumstances/housing circumstances as the result of MS that hang on an MSer like a ball and chain...BECAUSE OF Multiple Sclerosis. We are constantly in a state of trying to *Outwit, Outlast, Outplay* our MS. And, just between you and me? I'm growing sick of this game and sometimes wanting to change the channel!

OK, to be painfully honest here: I have never sat down and watched the CBS show, "Survivor". No NEED to. I really find no comfort or thrill in watching a GAME SHOW that attempts to simulate physical and mental endurance, AKA, *survival*. I get enough of true *survival* in my job, watching so many lost souls diving in dumpsters for a piece of left over food or sleeping in freezing weather under overpasses for shelter...and there is no TIME LIMIT to their game and no ability to be VOTED OFF THEIR ISLAND.

But I DO like the motto of the show because it does capture what we ALL attempt to do on a daily basis, with or without MS. The game simply gets more complicated when having to play WITH Multiple Sclerosis. Every day presents opportunity to *outplay* the disease...to make adjustments to our ways of thinking and our daily routines...to accommodate MS and work WITH it in our game. And, in the end, to hopefully OUTLAST the disease itself.

To bad there ISN'T a time limit in the game of MS...I'd sure like to walk away with that million dollars in the end! And just maybe, when my reality version of MS Survival is over, I could also get a spot as a cohost on the "View", too...

Behind Every Bull(y), There's A Big, Ol' Pile Of Crap...

I recently had the distinct displeasure of dealing with an adult *BULLY*. And, because here on CHEESE, even the utterly dysfunctional have a right to a concealed identity, I will go into little more detail than that. But suffice it to say, the experience got me thinking about *bullies* and how/why they even exist.

One could try to blame Darwin's *Survival of the Fittest* explanation on this one, but I'd have a hard time making a solid case that *bullying* is a higher level of functioning or a superior/stronger vantage place. In fact, *bullying* is quite the opposite. The act stems from a weakened personality attempting to exert control over another...often times trying to exert control OVER someone they fear is superior to them in some way.

*Bullies* find great comfort in transferring their inner most fears onto another...thus the need to CREATE fear by force externally. It is in the act of creating fear in another a *bully* is temporarily defocused on themselves...they feel a temporary sense of mastery and power, which has been deeply lacking in their internal selves. Because a *bully* spends so much time wallowing in their own inadequacies and fears, this temporary "relief"...creating fear or doubt in another...brings them a false sense of comfort.

Children deal with *bullies* every day. This has become a norm of childhood, not the anomaly. And as children, *bullies* also try to instill fear in other children because of a desire to relieve their OWN fears. As adults, *bullies* simply become more sophisticated in their approach...but the end product is still the same.

Yes, behind every *bully* at ANY age, lies a big ol' pile of crap...something a *bully* can spend their entire lives trying to cover up...

I'm Not Crazy, I'm Just A Little Unwell...

OK, well maybe I'm a tad bit of BOTH...crazy AND a little unwell!

I haven't posted any music on CHEESE for quite a while and, of course, my dead mother would argue MatchBox 20 is NOT music...but, this particular song has been wafting through the air in my brain like a bad earworm (that link explains my made up word) today. AND earworms always make me wonder why/where they are coming from.

I'm home again from work today. Fatigue (which SHOULD be a four-letter word, like "F-TEG", with a line over the letter "e" for pronunciation purposes!) has been kicking my rather large, lily-white butt for several days now. It's true...I HAVE been burning the candle at both ends (mindful to keep the flame away from my "end", aka, lily-white butt) of late. I continue to wage war against Club Med and their Tysabri billing practices, I have finally managed to put BACK all of the items littering my home and left over from the MS150 weekend, my friend AND her brother visited for 5 days from Houston (ah, the "bro" was an unexpected guest and you KNOW how I fear change/things unpredicted! LOL), I taught an all day class at work yesterday requiring some physical and mental exertion (and 10 hours of my time from 7:30AM to 5:45PM...and you KNOW how I love mornings?!?), and I've had various other work, personal, and life stressors on my plate as well as dealing with some new and uninvited MS symptoms like stuttering speech, etc...my proverbial *candle* is, quite frankly, used up and burned out.

Unfortunately, what happens in my thinking *head* when I become this fatigued physically and mentally is a pure, unadulterated MIND GAME. I begin to *wonder* if perhaps I AM depressed? Have I finally fallen into that great abyss called "mental illness" where I might scrape my fingers raw trying to climb out? Has my life sunk to an all time low and I will now have to learn to live with this level of fatigue or be damned to a life bedridden? And there is also the Guilt Monster lurking around in my brain, poking me in the shoulder and yelling, "Get up! Stop being a lazy a$$ and get out of bed!! You are a sloth...", etc., etc. The more I lend focus to these thoughts/ideas, the MORE fatigued I feel.

Joan over at A Short In The Cord , writes quite eloquently about her battle with MS fatigue...and I shamefully must admit, I did NOT have a basis of understanding about her situation until these past few weeks. Don't get me wrong, I have HAD various degrees of fatigue over the past 5 years of my Multiple Sclerosis diagnosis. I just have NOT experienced it on the level I feel fatigued NOW as I've always been able to "stop being lazy" (spoken like the truly MS ignorant!) and FORCE myself into action.

Today?...today, MS fatigue has punched me right in the face and is looming over me sneering and saying, "Stay down", like a boxer in the ring who knows they have just won the fight. The count to 10 has occurred and the bell has been rung...I feel dejected and "unwell" that I have lost this fight today.

I can only kick myself in the a$$ OR shoot myself in the foot so many times before body parts become numb and the act of mental self-flagellation becomes an ineffective response to my fatigue. Hindsight is also of no use when I become this exhausted and assuring myself I will NOT allow *me* to be over-taxed, over-worked, over-stressed, and over-active again does not resolve the current situation. Telling *me*, "You need to take better care of yourself", serves NO useful purpose at this juncture...I am HERE and this is NOW. And I simply must deal as best as I can WITH the "here and now" (too bad I am NOT a Zen Buddhist...this idea might be easier to incorporate if I were!).

It is helpful to rely on my years of training and experience to recognize I am NOT *crazy* or careening recklessly down that particularly dark road...I am not even necessarily *depressed* in the practical sense of the word. But I AM sad...this feeling is VERY real.

I am sad Multiple Sclerosis exists and I am sad it is in my life. I am sad to admit I must now make necessary adjustments in my life to fit MS in. I am sad MS accompanies me everywhere I go and makes itself known in everything I do. I am sad I even have to fight Tysabri battles OR take the medication at all. I am sad I MUST force myself at times to get to and through long days at work to support myself when my body insists on other things. I am sad I cannot be and do all of the things I once did with ease. I am sad to admit any of this to anyone.

But...I'm NOT crazy. I'm just a little unwell...

I KNOW You Are, But What Am I?!?...

I love that line...the title of this blog post. It's from " Pee Wee's Playhouse ", a kid's show in the mid 80's. It amazes me I remember ANYTHING from that era...now that I'm sober (a story for another time). LOL

Paul Reubens, aka, Pee Wee Herman was the voice and persona behind the main character of Pee Wee's Playhouse...it was actually a pretty good kid's show in its time (yeeeeah...I know. Why WAS I watching it then?!?). There was even a movie put out by Warner Brothers, called "Pee Wee's Big Adventure". Life was good for Pee Wee...until in 1991 the man behind the character was arrested for public masturbation in a movie theater...rather an odd synchronicity to play a children's character named "Pee Wee" and then get arrested for exposing your Pee...well, you know what I mean.

Basically, I believe Paul Reubens was/is an OK character (not Pee Wee, the MAN)...he did some public service announcements, several in Hollywood (even Bill Cosby, I believe) came to his defense, and the issue was eventually forgotten...mostly. I feel the same about Paul Reubens as I do former President Bill Clinton. He was basically a good president. Yes, CERTAINLY there are things about both of these "characters" that would be considered a swan-dive fall from grace, but I still believe in their ROLE/how they have served the public, has resulted in basically good things.

OK...I hear you. Just bear with me for a moment and I'll bring this topic back around to something semi-thoughtful!

Yesterday, I had the great fortune of having lunch with two of the finest people I know. And when I say "finest", I mean finest of character...basically very GOOD people. They are the type of characters I STILL say, "When I grow up, I want to be like such and such"...because I respect them...because when I am around one or both of these characters, I find MYSELF wanting to be a better person. They inspire me to show MY *basically good* side to the world...something that sometimes gets "hidden" under the clutter of my personality.

The folks I am speaking about are not *perfect*...can we just accept my near anti-Christ assumption when I say, NONE OF US ARE? They have their "dark sides", their idiosyncrasies, their own "issues" and, neither they nor I, are blinded to this fact. Yet STILL, they inspire ME to be and become a better person than I am in this moment in time and to be mindful of who and what I CAN be in this world.

"Why, how on earth do they do THAT?" you ask. LOL Well, I've pondered this notion in the wee (not pee wee) hours of the morning and I came to the following conclusion: I am inspired by those who have a firm conviction/belief about what is basically *good* and *right* and *fair* and *just* in this world...and by those who LIVE by this conviction, no matter the cost.

When I FINALLY *grow up* in this world, I hope that I will be able to maintain a steadfast conviction of respect, responsibility, justice, and compassion. I hope that I may one day BE the person someone ELSE hopes they can grow up to be...knowing my faults, my shortcomings, my darkness, and my failures...and STILL be inspired and inspiring to become "just a little bit more". I hope one day I will be able to change Pee Wee's saying to, "I know you are, and SO am I"...

Where We Find Ourselves...

I had an interesting, albeit *disturbing* conversation with a coworker of mine today...it seems another coworker had been reading CHEESE unbeknownst to me and had taken offense to something I had written here this Spring, believing I had surely "singled them out" in a particular post ...and not in a "good/Martha Stewart" way.

I found this information *interesting* in the fact I had no idea ANYONE from my work place (other than dearest Rojoo and Saint EB) even READ my ramblings in this blog (they have permission and are both often "hot topics". LOL)...AND, I found it *disturbing* that ANYONE, friend, family, coworker, or foe, would take something I write here and find personal offense.

I have said this before on CHEESE (and I'll obviously be saying it again now), WHAT I write here and the CONTENT of my writing evolves from many sources...from details of my life to generalizations about YOURS...and a whole lot more mixed up in between. When I am writing my *stories* on this blog, I am always attempting to be mindful of the potential impact my words may have on another...both positive and negative. I frequently develop posts with the intent to stir thought, controversy, common goals, feeling, and action, often blending MANY examples or experiences into one. Yes, what I write here on CHEESE remains "true", but often the detail, especially the names, and even sequencing of events are altered for effect...written in a way in which I hope many can relate in as succinct a tale as I can possibly tell in 100 words or less. LOL

What my conversation with my coworker today brought home was two-fold. First, I was reminded once again what a powerful impact words can play in another person's life. Words pluck the very fibers of our core, touching feeling that is often left undiscovered until the feeling is brought to light in the context of our written and spoken vocabulary. Words translate for the heart and can either be used as a cushion or a sword.

The second idea my conversation sparked was the notion of how we all see ourselves in the world through other's examples or words. I'm sure anyone who reads this blog has had the experience of a particular song or poem that seemed to speak volumes about ourselves. The writer or composer did NOT have you or I in his/her sights when writing the words, yet somehow we FEEL as if the song or poem was written just for us and about us...we want to BELIEVE we are somehow connected to something out there and that we are understood. This overwhelming need to connect is narcissism in it's purest form, yet it is something that remains innate within us all...we all seek to see our own reflection somewhere in the pond we call *Life*. And HOW we see ourselves remains a complex reflection of our life experiences and our innermost core beliefs we carry about each other and ourselves.

What we lend our attention to is what we see the most...I truly believe this behaviorist saying. If we are constantly angry in the world internally, we begin to only see anger in another. If we frequently feel afraid, many situations in our lives pose dangerous consequences. If we harbor ill will toward others, we only see what is unjust in the world. And we sadly often consciously and unconsciously try to avoid our true reflection because we do not LIKE what we see in Life's mirror...we do not WANT to see ourselves as vulnerable like the kitten in the picture up there...we WANT to see the *Lion* because we feel discontent or uncomfortable or small with who and what we really are.

My words are just that...mine. And my experiences remain bound to me. But just as I relate to YOUR experiences in a very personal and profoundly intimate way, I cannot discount that you may also relate to mine. You may SEE yourself reflecting back in my mirror of words...you may RECOGNIZE a trait or characteristic of your own hidden within the computer screen. And what we must ALL learn to do when this happens, is to take the experience/reflection and accept it for what it is...an opportunity to learn and to grow...

Namaste

Win Or Lose...Is It REALLY How You Play The Game?...

Especially if you feel like you really didn't WIN anything?

I suppose an apology "should" be worth something these days, but frankly it means SQUAT to me...I'm talking about the Club Med Head's of State meeting today that lasted for one hour as I finally got some concrete answers regarding my Tysabri billing questions.

In short, the Club Med head of Finance and the head of Pharmacy took time out of their busy (and probably overpaid) schedules to appease me today and attempt to answer the ongoing questions I have been posing for the past month about how they are billing Tysabri patients. They actually APOLOGIZED for the organization's mishandling of my concerns. They listened to my questions and had reams of paper they fingered through to respond to my questions. They assured me the CEO of the Club Med campus where I receive my infusions was aware of my concerns. They showed me the reimbursement they would be making to my Gold Card Insurance Company for my 8/29/08 infusion. They told me many heads of many departments had been involved and made aware of the Tysabri issue. I was told there would be a "re-education" process conducted at the campus where I receive my infusions. I was assured ALL of the Tysabri patients within Dr. She Who Will Not Be Named office would be receiving a letter of INFORMED CONSENT regarding future billing issues. They rung their hands, quoted various policies and pharmacy formularies, spat out numbers and equations for how they set the prices for their billing, and told me there was an "exception" made for the drug, Tysabri, within their system...they would be lowering the COST of the drug for MS patients.

But, when all was said and done, and as I calculated long hand on a small piece of paper EVERY FIGURE they spat out, Tysabri infusions will STILL cost well over $10,000 an infusion!!! I pointed this out to the Club Med Heads Of State. I questioned how they could STILL even consider marking up the cost of this medication nearly quadruple Tysabri's whole sale price and STILL sleep at night? I pondered how they could possibly think marking off roughly $2,000 of an already HIGHLY INFLATED drug cost would be seen as a "consession", given the yearly cost of the drug would STILL be well over $130,000???

They stared at me as though I were an ungrateful beggar. Imagine little ol' me...an MS patient with barely a pot to piss in OR a strong leg to stand on...questioning THEIR hard work and calculations that should be viewed as a "gift"? Who the hell WAS I anyway? And although nothing of the nature was actually audible or said, I imagined their lips moving and saying, "We're Club Med. Go eff yourself. We do what we want. Who ARE you to question our Divine ways?"

What WAS audible and DID come out of my mouth is this:

"I am an MS Advocate and I speak for ALL of Club Med's Tysabri patients. This is not acceptable."

The game ain't over team...

Hurricane IKE Blowing Into The Northwest...

Emails have been trickling in from my friends in Houston, all having survived Hurricane IKE, thank goodness. A bit worn for the wear, but alive.

This weekend, I received an email from my friend, Skeeter, alerting me she was alive and semi-well in the heart of H-town. She also casually mentioned she had purchased a plane ticket to come to Seattle and visit this week.

WOOT?!?

Skeeter and I have been friends since the early 90's...as a matter of fact, she just recently VISITED Seattle/me on the heels of my sister's visit in July, coming to the area to attend a conference. We had a very nice visit and had talked about the possibility of her returning for a few days in September. One has to understand my friend at this juncture...we talk a LOT about things that never pan out...and, after not hearing from her for well over a month, I had made the assumption a return visit was just that...talk.

Panic set in this weekend after reading this email. As you know, I have not been feeling well at all and I've been under considerable work/personal stress. I felt I could not possibly deal with ONE MORE THING on my agenda, dear friend or not. I was frustrated my friend would just *assume* I even remained ALIVE without having had contact for over a month let alone capable of entertaining for five days (I hold a secret death wish that I might one day expire in my sleep, only to be found days later because my cat has clawed her way out of a wall and alerted the neighbors of my passing!). So, in a state of utter overwhelm and fatigue, I called Skeeter to let her know I simply wasn't "up" for a visit.

Her cell phone rang a few times before she answered and we exchanged niceties briefly...not wanting to jump right in with bad news of my own pending demise, I began the conversation inquiring about Hurricane Ike and any effects the massive storm may have had on her. Well...

Skeeter proceeds to tell me in a rather pressured voice that six of her trees have fallen, one on top of her home (a home she has spent the last 7 years remodeling with her own sweat and labor), she has had 6 inches of water flooding the entire house and "flood insurance" that doesn't cover RISING WATER, only FLOODING (WTF?!?), she is STILL without electricity and the weather is turning to 90 degrees on Sunday, and...she just needs a break and has to get away. She apologized for not contacting me sooner, but without electricity, she has had no Internet access (she went to her office where a generator is running power for the building to send me her email), cell towers had been down for several days and without an ability to recharge her cell phone, she couldn't make calls, and...she just needed to get away.

As you can imagine, by this point in the conversation, my heart literally hurt. On the one hand, I was having strong urges to take care of ME...I have such little reserve right now and feel as if the life is being sucked out of me by these recent MSish symptoms. And, on the other hand...she just needed to get away.

We talked for several more minutes (being mindful of not running down her cell phone battery) and I ended the conversation with, "I'll see you on Wednesday". Sigh. Double sigh.

Somehow I will find the energy somewhere to spend time with my friend...to invite her into my less-than-tidy home (I STILL haven't even gotten everything put away from the MS150 weekend!)...to feed her, give her a comfortable place to sleep in an environment that needs no air conditioning or electricity to stay cool, and provide a place to "just get away". It's just what friends do...it's just what MY friends would do for ME if I "just needed to get away".

Tomorrow (Tuesday), I meet with some mucky muck from Club Med to pound out the details of my Tysabri billing and hopefully not get arrested for any type of violent act. I have no pretense whatsoever how THIS meeting will go and I am prepared for it to be similar to the past month of contact with them...dealing with stoopid people who seem to think I am as ignorant as THEY are. LOL Once my meeting is over, I'll head back into work for my final shift before my brief furlough, return home tomorrow late night, try to find a few moments rest, and most likely get up Wednesday and begin SHOVELING OUT THE HUT in preparation for Skeeter's arrival.

I think after this next week, I'm going to "JUST NEED TO GET AWAY"...I only hope it's not via pine box casket! But I'll try to give YOU a few days notice before showing up on your doorstep...hehe. And you are not certain if I mean YOU right now, are YOU?!? (**checking past emails from CHEESE readers in Maine, Arizona, Colorado, Nebraska, Minnesota, Oregon, California...Moohahaha**)

No News Is...Well...NO News...

Ah...I am so sorry, all two loyal CHEESE readers, for 'dissing' you here and not posting more regularly these past few weeks. The truth be known, I have just been so incredibly busy and not feeling well for 3 to 4 weeks...blogging has had to take a back seat as I try to maintain some sense of balance (funny analogy for a vertigo-stricken MS patient, eh?!?) in my life and not fall prey to various annoying-and-possibly-stress-induced MS symptoms. I became so weak at work yesterday, I thought I was going to have to pack my bag and return home to the confines of my hut...as it turned out, it was discovered by one of the ER nurses (at one of the hospitals I frequent for WORK) yesterday, that I was running a low grade fever (100.2) as the possible culprit for my pending demise. I did manage to work to the end of my shift, but not without frequent breaks and *cursing* under my breath!

I sent Dr She Who Will Not Be Named a series of emails regarding my health (or lack there of) status, but realize I am most likely the victim of my own stupidity and simply need to slow down my pace for the time being. Here's a narcissistic excerpt for your reading (sent after she advised me she was "worried" about me AND she is leaving the area for 10 days):

Something is "wrong" with me, but I don't think it is life-threatening...LOL I'm honestly not sure WHAT this is as I just generally feel *sick*...I get a headache sometimes w/ feeling dizzy, my speech has been effed up for two weeks now, but is more my thinking than actual enunciation. My leg started out feeling "restless-y" immediately following my Tysabri infusion then switched to feeling *heavy*, so I've just chalked THAT up to "something new". My sleep is horribly disturbed and my joints ache a lot in the night (which could be why my sleep sucks?!) as well as I am horribly fatigued AND needing naps during the day just to function, which I have never done before. I do NOT feel depressed and my emotional state is unchanged. I've seen AIDS patients with PML and I'm fairly certain that is NOT what is wrong (my vision is fine, no unusual clumsiness, no paralysis, etc.). And now this evening, I discover I am running a low grade fever. I don't "think" I have any kind of infectious process and, if I did, something should have shown up on my labs on 8/29/08. This has been gradually worsening for the past 3-4 weeks and, quite frankly, just seems like some weird *thing* that is shifting around inside me--nothing really worthy of complaint until today as it has started to affect my functioning at work.

I imagine this, too, shall pass...*things* ALWAYS do...eventually. I just got so suddenly weak today, I think it frightened me more than endangered me. And, I STILL haven't left work yet because I can't focus to get my paperwork done! Sigh...No worries...seriously. My fingers aren't broken and I know how to dial XX(*her minion at the office*) or 911 if I need to. :-)

I also resumed the *battle cry* with Club Med (remember the Tysabri infusion/billing debacle?!?) this week and, finally yesterday, had simply HAD ENOUGH. I decided it is/was time to offer *no more Mr. Nice Guy* (or as the case may be, no more *patient patient*) and fire my final warning shot overhead. The following email stirred a most accommodating phone call from Club Med's head of the Financial Department and I am tentatively scheduled to meet with them in person on Monday (names have been changed to avoid future lawsuit!):

Ms. Blahty Blah,

I am now addressing YOU regarding my month long inquiry of charges billed to my insurance company *rhymes with "Netna"* (on the advice of XXXXXXX at the the place I go for clinical care) and my ongoing dispute of charges with Club Med for services 5/14/08, 7/29/08, and 8/29/08. Your name is simply the NEXT in line of a series of names with whom I have had contact.

I received Tysabri infusions at the Club Med infusion center on the above mentioned dates. My insurance company has been billed a WILDLY and varied amount of charges for each of these three, identical services--no billing has remained consistent, yet the procedure has NOT varied at all. I have spoken to or emailed no less than EIGHT different individuals within the Club Med and Clinic systems, repeating the same litany of questions/concerns for OVER one month, and have yet to receive ANY reasonable answers to my questions, and at times, even no ACKNOWLEDGMENT of contact. I have left TWO separate voice mail messages for a Your Minion with a request to meet face to face to review an ITEMIZED billing/statement of charges (specifically concerning over $10,000.00 of charges hidden as "hospital incidentals" in billing), yet she does not return my phone calls or even acknowledge my concerns. This level of disregard is highly appalling and furthermore what would be deemed a disgrace in any business setting.

This lack of response and inability to work with me directly as a PATIENT of services within the Club Med care delivery system is affecting my health. I should NOT have to spend countless hours constructing emails and placing phone calls to a system that is "supposed" to be designed to promote my health, not systematically increase stress that directly affects my diagnosis and the VERY REASON I seek treatment within the Club Med Hospital system. I have given what I feel is a reasonable amount of time to Club Med to resolve what appear to be fraudulent insurance charges and questionable medical delivery practices and time to make amends to my insurance company, myself, and numerous other patients currently receiving Tysabri infusions at Club Med Hospital. I had faith the matter would and could be handled internally within your system and not require outside intervention. My patience with the matter is frankly exhausted and, as a consequence, my health is suffering.

Please be aware if I do not receive some sort of response from the Club Med Hospital system by Monday, September 22nd, at 5:00PM, THAT ANSWERS THE QUESTIONS I HAVE POSED IN WRITING REPEATEDLY (if you'd like a forward of the numerous emails sent and received regarding this issue, I will gladly send), I WILL be filing formal appeal to insurance company that rhymes with "Netna", contacting the "Netna" Insurance Fraud Line, contacting the County I work in Benefits liason, contacting the State Pharmacy Board, contacting a media source who has already voiced interest in investigating this matter for me, and contacting any regulatory agency that can be remotely connected to the matter.

I can be reached either by email or directly at my super secret bat phone number. Please be aware my phone line does have confidential voice mail and a message is welcome at this number. Because I work full-time (in order to PAY for the insurance that PAYS Club Med Hospital), I may not be able to respond to messages immediately. I do look forward to hearing from you directly regarding this matter and hope answers can and will be obtained.

Thank you,

The bitchy Tysabri patient who refuses to change medical care locations because if I did, you'd wash your hands of me and NEVER respond to these concerns!

So, as you can see, I've been a tad bit preoccupied and begging your forgiveness in my lack of blog reading and blog posting in the MS World of late! I'll keep you posted on the outcome of what I can only ASSUME will be yet another feeble attempt by Club Med to shut me up on Monday.

Peace Out...LOL...

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...