Friday, October 31, 2008

I ALWAYS Get Blamed...Part II...

OK, so Bubbie *beauched* me out for posting a post that I deleted (she's a powerful woman to get me to respond here!)...if you have Google Reader, it probably came up that I posted something titled, "I Always Get Blamed", or something like that.

Well, what happened was this: Dr. She Who Will Not Be Named sent me the original link to a video that had my BIRTH name in it...and I thought the video was so funny, I resent it to myself with my "Brain Cheese" name embedded (because God forbid, anyone but Baby Jesus and the FBI should know my TRUE identity!). Then I tried to post the video to CHEESE, but it wasn't successful.

SOOOOOOO...the best I can do is post a LINK to the video for you to click to and watch if you so desire: I Always Get Blamed For Everything! Hopefully the LINK won't change the way the video is played like editing the html did!

Awright, away. LOL

Wednesday, October 29, 2008

The Most Difficult Letter I May Ever Write...

Dear Family, Friends, Coworkers, Acquaintances, and Small Pet:

I am writing to inform you that, contrary to what I may be telling you or what you may think you are observing, it is a lie...a falsehood that I have been perpetuating for several months now. Something I have been saying or pretending to be as a means of hiding behind what is my truth...something I have been actively trying out of desperation to cover up because of fear and a sense of vulnerability.

I have Multiple Sclerosis and I am not well. These past few months have come with a new level of loss and grief as I have struggled to manage, hide, and deal with ever-changing and perplexing symptoms of my MS. I have wanted to believe out of desperation and fear that these "changes" were simply temporary...that, as usual, I would experience new symptoms (relapse), but they would eventually go away (remit), and I would happily return to the same level of functioning I have taken for granted since I was diagnosed in 2003. It is with deep sadness I must admit to you, but primarily to myself, that this is not the case. I am slowly becoming "disabled"...a word I both abhor and one in which I am terrified to speak out loud.

I am losing cognitive abilities. Something I am far more frightened to admit or deal with than any trepidation I might experience in having a leg severed from my body. Yes, I know that sounds extreme...certainly losing a leg *should* be far more traumatic than a slow decline in one's mental capacity? But in my world and way of thinking, it is not. You see, I could learn to walk again with only one leg...and I have a second leg to carry me as well. What I do not carry spare parts for is my MIND and my ability to speak, make decisions, process language, experience regulated affect, and a whole host of other abilities each of us uses every day as a defining feature of who we are as a person.

I am experiencing a constant and sustained level of fatigue. No, I am not depressed. Depression would require a mood or affect change that would result in a lack of desire to participate in the world around me. Believe me when I say now, my DESIRE to participate is there, but the basic energy to do so is generally absent. I find most days, it becomes a guessing game of just how much energy I must conserve to complete the simplest of tasks...and how much energy I must expend just to fulfill the duties of my employment. When you have asked me to do this or that or go here or there and I have declined, you may have been left feeling as if I did not care about the activity...or worse, I somehow did not CARE about you. I can only apologize for my lack of clarity and/or flippant explanations I have provided or any hurt feelings you may have experienced. It has never been my desire to shut you out of my life...but I realize by now you may have chosen to turn away from me as a means of self-preservation.

I am unable to walk distances I used to glide through with ease. Contrary to the negative chatter inside my OWN head, this is not simply the result of a character flaw or laziness. The nerves that used to carry the necessary impulses to move my legs through sustained periods of exercise no longer are firing in their general patterns or directions anymore. I spend a great deal of time experiencing either a "cramping" sensation in my lower extremities or, worse yet, no feeling at all in parts of my legs. I stumble more than usual now. I crash into things with regularity. We generally have laughed together if you have been an observer to these mishaps. But inside my mind, I am not laughing...I am nervously trying to mask the alarming manner in which my legs may suddenly become foreign appendages to me. You are not witness to the bruises on my legs because I do not want you to see the contusions and question or worry about me. I have never wanted your "worry"...only your companionship.

My vision is changing as is my ability to immediately recognize your face. It is true...I may have known you now for several years, but in my presence, my brain may not receive the signals from my eyes in the same manner and quickly process who you are. It is not because I no longer "know" you. It is because there is what feels like an interminable amount of time needed now for my brain to recall and distinguish things I see. If I walk past you and I do not acknowledge you, please do not immediately believe I am ignoring you or simply being rude. I honestly may not recognize you until several seconds AFTER you pass me by.

I remain in a constant level of pain. This causes me to feel distracted quite frequently and, to be quite honest, more irritable than usual. I do take medications to assist with this pain, but the pills are often too strong for me to tolerate during my waking hours, and I am left to either tolerate this discomfort or be too medicated to function fully and safely in the world around me...most of the time, I choose to tolerate the pain. I do not tell you this part of my story as a means of "one upping" any ongoing physical discomforts you may also be experiencing. I do not wish this type of pain upon anyone nor am I trying to invoke sympathy from you. I am merely telling you this so that you might understand it is there for is now, always there.

I have much greater difficulty controlling and regulating my affect. This again, is not to be confused with an idea I may be depressed. Sometimes, things that would normally NOT be funny, cause me intense laughter and I try very hard to control this because I recognize THIS symptom of my MS is NOT socially acceptable. But, it IS there all the same...and it creates great embarrassment for me. Likewise, so does my inability to control my tears. I can now begin crying for no real apparent reason and I will often hide away from you when this happens because I do not wish to alarm you. I am not necessarily FEELING sadness when this occurs. It is a misfiring in the frontal lobe of my brain that creates a false sense of emotion. And I, too, struggle to separate out the physiological aspect of this phenomenon from a true, emotional component. As confusing as this may be for you to observe, it is far more confusing for me to explain to you. And it leaves me feeling out of control of the most basic aspect of my emotional experience of the world around me.

I sleep very poorly due to pain and most likely due to generalized anxiety this pain creates. I will often tell you in jest that I either do not require as much sleep as you do to function or I will use my work hours as an explanation for emails or even phone messages you might receive during hours a "normal" person might sleep. This also contributes to my severe fatigue and is something I struggle to regulate with medications and other alternative therapies. If I mention to you that I am "tired", it is because I am physically exhausted...not simply bored or disinterested in some portion of my awake hours. Sleep, and what few winks I can catch of this elusive experience, is extremely important to my functioning and I now might be found "napping" during the day when I can. I hope you will not confuse this with a sense of laziness as I often label the response. It FEELS disrespectful and "lazy" for me to nap through your phone call and not answer, but I do not want you to stop calling me because you repeatedly are unable to reach me. I hope you might grow to understand, and thereby assist me to understand, that sleep has become as essential to me as food or water and I MUST obtain as much of this as I can to replenish my nervous system.

On any given day, I may experience a worsening or a grateful lessening of any of the above symptoms. You may, in fact, one day see me limping or dragging a leg in pain and, the very next day, see me walking just as a "normal" person might. It is not because I am somehow "faking" a symptom one day or perhaps even "allowing" myself to experience a symptom I might otherwise be able to PUSH myself through. Quite the contrary is true and it is the unfortunate nature of this disease. As surely as it is confusing and baffling for you to comprehend the WHY of my experience, it is equally as frustrating for me to grasp any sense of clarity in my day to day functioning. I may one day complain of numbness, or dizziness, or pain in an area of my body, or facial tics, or eyelid spasms, or incoordination, or have visible tremors...and the very next day, this symptom may have abated. This frustrates me greatly and, although I *should* be thankful the experience has passed, I am actually left feeling angry it ever surfaced in the first place. And, I feel embarrassed and "silly" to have bothered you or anyone else with my complaint at all.

Throughout all of these gradual and recent changes in my health, I have silently remained in fear of the unknown. I have not wanted to worry or invoke sympathies by telling you this...that is true. But I have purposely not disclosed this information to you because, on a very basic level, I did not want to admit to myself any of it is real or has been occurring. I have found myself pensively laying awake at night in anxiety, worrying what the ramifications of these physical changes may have upon my ability to remain gainfully employed, how I will continue to physically and emotionally survive if I can no longer participate in an avocation I truly enjoy, and I have cried many tears of anger and grief by myself. I have consciously placed myself in a status of "aloneness", which has provided an end result, of feeling alone...and this has neither been productive nor useful to me. I have contemplated my own mortality and silently wished that, if I become rapidly "disabled" to the point I no longer feel I am a productive member of society, that Death will take me silently in the night...that whatever gods or higher powers or spirits might be in charge, shine a face of empathy upon me and let me slip peacefully away without fanfare or loss of dignity. I have contemplated LIVING with my steady decline as surely as I have contemplated DYING as a result.

It is with great humility and extreme vulnerability I write this letter to you. Because I can no longer expend the energy required to smile and pretend with you that I have not and will not continue to experience further progression of "disability", I place these words upon the page. It is because I owe YOU as much as myself the freedom of honesty in this experience, that I type these words. It is because, throughout these past few months, I have slowly begun to comprehend the notion there is strength in vulnerability, I share these most deeply guarded secrets of myself.

And finally, it is because my relationship with you, if lost, would be far more traumatic than having a leg severed from my body OR losing the functioning of my mind...this being I call "me" would be forever lost without "you".



An Ounce Of Kindness...

I have just returned home from one of the top ten worst days in my professional career. Suffice it to say, no one DIED ON MY WATCH (which would be the *ultimate* worst day case scenario)...but a combination of circumstances out of my control, mixed with the alignment of tumultuous ocean currents, constellation phenomenon, and perhaps someone poking pins in a Voodoo doll secretly behind my back, resulted in a seriously stressful 10 hours at my job (because, as you KNOW, that's basically all I CAN say specifically about my work here on CHEESE...ehem). At one point, the latest MS "uncool" symptom to develop (something known as *blepharospasms* or involuntary twitching of the eyelid(s) the link or Google the word for more info because I'm too tired to provide it here!) impaired my vision so much, I was having difficulty seeing to write.

My day began with an appointment to see my OWN shrinky dink, who casually questioned what my neurologist thought about my latest sequela of unusual and bizarre maybe-neurological-maybe-not symptoms. A bolt of lightening flashed from the sky and hit me on the head in that moment as I realized I have never specifically ASKED Dr. She Who Will Not Be Named WHAT she is thinking these MS or not to MS?...that is a valid question! I mean seriously. Some of the things I have been experiencing over the past 6-8 weeks have been both baffling and highly suspect on the MS scale. I decided to consult my Internet Doctor and ask.

Funny thing is, I never got a direct Internet answer...just more questions. Oh, and I was told I need another MRI. Blah.

Knowing it was highly unlikely I would not perish at work from twitching eyelids (which is just the LATEST of strange symptoms and my shrinky dink verified that "yes", my eyelids actually ARE spasming...most uncool and maybe or may NOT be MS related), I headed out the door in the early afternoon for my place of employment...only to be bombarded with a nonstop, 10 hour barrage of *situations* requiring what little strength I have left to use to effect a positive outcome. Or, in English-speak: I got the crap beat out of me mentally/emotionally for trying to do the "right" thing. It happens. Just not usually in the cascading effect of today.

When I finally dragged my weary bones back to my main office (otherwise known as the "bat cave"), I was faced with decisions to cut some corners on my typical OCD way of completing my work, or be faced working several hours of overtime to complete my tasks. Tired won out. Corners were skidded round. Things I would normally check and double check for accuracy got a *once over* was simply the best I could do.

As I sat at my computer trying to compose complete sentences, I realized a coworker of mine was sitting in the next cubic-hell over from me. He'd been there obviously for quite some time, but I was so super-absorbed in my own trials and tribulations, I had not even acknowledged his presence. I also suddenly (like a horrible Tourette) blurted out a fact I have known for quite some time: He is retiring soon after working many years for my employer.

"Hey, *dude in the next cubic-hell* what's this about you retiring in *an upcoming month*?" I blurted out from somewhere in the recesses of my brain.

He came around the cubic-hell wall installed to keep the natives in and we began to converse about his upcoming life change. I honestly felt guilt and remorse that I had not taken the opportunity to acknowledge his retirement sooner and offered up the excuse that I had been "too self-absorbed" lately...poor excuse, but painfully true.

And this is when the conversation shifted back to me (which my world totally revolves around, if you haven't figured THAT one out already!) and he remarked on how well he thought I had been "managing your brain", in spite of all I deal with in having MS. He commented he knew this because he occasionally reads CHEESE, so he felt he had some understanding of the difficulties I face...there was a moment of compassionate kudos. At which time, tears welled up in my eyes.

It felt as if someone had just given me a first rescue breath of CPR. That someone, in spite of my sometimes oblivious-self-absorbed-nasty-self, had acknowledged my struggles and was cheering me a moment when I seriously contemplated just laying my head down on my desk and staying there for days until someone called the County Coroner to have my husk removed. It was so little...only an ounce of kindness...but had such great weight on my heart.

I am reminded we never can truly know how important our words or actions may be to another. We may never know what affect or influence such simple things as a hello greeting, a smile, a kind word, or a touch to a shoulder may have on another human being. We may never be privileged to see the many ripples that form from these drops we leave on the surface of another's life. But I am reminded, I must NEVER stop trying...I must NEVER stop dropping a kind word into the pool of another person's heart. And I am reminded of this, not because of MY own words or deeds, but because of the effect someone ELSE has had on me...and I am humbled.

So, *dude in the next cubic-hell*...if you are reading this, you KNOW who you are! Your ounce of kindness weighs like a pound of gold and I thank you...

Monday, October 27, 2008

I Wanna Be THAT Guy!...

I know why they're there...sort of. Those *image verification* passwords some of y'all have on your comment section of your blogs. And, usually after THREE or FOUR tries, I can type the right crap/sequence of letters or numbers in the box and leave my ever-so-witty comments on your blogs! Sometimes this particular process takes me longer than it does to "finger fly" on the keyboard and TYPE my ever-so-witty comments (as most of you can tell by the level of THINKING my comments require. LOL).

Ever now and then, however, one of these image verification thingamajiggies just gets me rolling with hysterical laughter (and *maybe* it's from frontal lobe lesions w/ my MS, too...perhaps).

Like, for instance (and I kid you not), tonight I was over at pUNKrOCKfAIRY's blog (or some spelling like that) reading a very heartfelt post about (what else?) MS and I typed out my comment...I was trying to be "all that" and philosophical with my comment. I was *trying* to be a voice of maturity and wisdom. Until I got to that blogger-image-verification-thingamajiggy and went to type in the letters required to get past the Post Police and LEAVE said comment splattered on her comment wall.

The image verification password I had to type in was P - H - A - A - R - T. phaart. I don't know about YOU, but I'd pronounce that (using the Queen's English) as FART! OMG!!!!

OK, I KNOW there is not a *person* per se who generates these image verification codes, but I really WISH there was because I WANT TO BE THAT GUY/GAL! I've got LOT'S of things I'd like the opportunity to spell out in code (and if you've read much here on CHEESE, you've already noted not only classic spelling ERRORS, but deliberate miss-spelling of words)...Like say *Ubeauch*, or *byteme*, or *effoff*, or *phatcow*, ideas are endless! KNOW, if this little psych nurse gig I've got going on ever dries up, I smell a new profession on the horizon!...*gottagogh*, *bbaksoon*...

**(huh, huh...I said fart)**

Saturday, October 25, 2008

Mar 'in Sheen, Get Off My Screen!...

That title is the first line of my latest rap song I've been working on. Yep, I'm about to rip loose with a big ol' fashioned CHEESE rant here!

OK, Martin (if that really IS your name, which I know it is NOT...Wikipedia told me so, Mr. Ramón Gerardo Antonio Estévez)...when you played the role of the President of the United States on that West Wing Show (which I never watched), I had a tad bit of respect for you (or at least the shows' writers) because your role was that of a president with Multiple Sclerosis. Kudos. But my praise stops with that five-letter word.

Get the hell off my Washington State TV screen with your "ignert" ads concerning Initiative 1000/Washington State Death With Dignity proposition that will be voted on November 4th! You DON'T live here. You seriously DON'T have MS. You can't even VOTE on the initiative because you're not a Washington State resident. So why do you care? Why don't you use that dwindling celebrity status of yours to promote something "good" say, MULTIPLE SCLEROSIS AWARENESS?!? Volunteer to do a Greater Washington MS Society ad...for FREE. Otherwise, get the hell off my TV screen about this.

I really can't take much more of this political advertising. No one is telling the TRUTH anyway. But having some aging actor from CALIFORNIA (Malibu to be exact...Wikipedia told me so and we all know Wiki doesn't lie ...wink wink) instill fear and further ignorance about this issue is just maddening!

And while I'm on this rant, let me ALSO say this (because I'm an equal opportunist basher): There is no friggin' DIGNITY in death, so I really wish we could come up with another name for making a moral and competent decision to end one's life when faced with terminal/certain and insufferable pain/death. If anyone believes there is "dignity" in the physiological act of death, try being around a corpse immediately post mortem. Every bodily muscle relaxes, including the bowel and the bladder...death has an "odor". Blood begins to pool and the flesh turns a ghastly and mottled color of crimson and blue/gray. IT'S NOT PRETTY. And it's certainly NOT dignified.

But death IS a fact of life because life IS terminal. Some people would just like to have the CHOICE of opting out of the excruciating part of the pain and suffering that sometimes accompanies dying. Some people would like the CHOICE of bypassing that possibility, in the same way we compassionately put our dogs down at the veterinarian's office (which is an entirely different tangent on this rant).

In Oregon State (where a similar law was passed in 1997), 341 people to date have CHOSEN to enact their right to end their pain/suffering prior to their terminal disease killing them naturally...that's over the past TEN years. And the majority of the folks who seek out the CHOICE via the multitude of forms, exams, mental health evaluations, and certifications they must jump through just to GET legal approval NEVER COMPLETE THE FINAL INGESTION OF THE LETHAL DOSE OF MEDICATIONS. Don't believe me on this one? Google it on the Oregon State DSHS website (and if not, just go Google yourself then!).

So shut up,
Ramón Gerardo Antonio Estévez, and stay the heck in California where you belong...where you can die of your OWN natural causes there. Like alcoholism and smog and death by sun stroke....

Friday, October 24, 2008

Self Portrait Of A Shadow...

I've been spending a large portion of my day today consciously (and unconsciously) thinking about shadows. I even took the time out of my hectic steroid withdrawal/post "if this is a relapse, it sucks" phase to photograph my own, physical shadow...because it seemed somehow *important*...because fall is in the air, daylight is spending less and less of its time gracing our presence, and...well...I've been thinking a lot today about *shadows*.

So WHY am I so focused on shadows today (I KNOW someone must be asking this!)? The answer is both quite simple and highly complex...just what you'd expect from a navel lint gazer, I suppose. LOL

As always on CHEESE, I am ever-cautious WHAT I write here because the Internet can be an open window of peering for billions of eyes...not that billions of eyes DO come to read my blathering (more like two TWO loyal readers!). But I am always cautious of telling ANY stories that might involve others, never knowing if those "others" might be that anonymous *click* into this blog. And even if *they* aren't the subject of my tales, far too often the human psyche wildly will project itself into ANYTHING it recognizes as "self".

OK, I'm psycho babbling here...but prepare yourself with some rubber boots because the *psycho babble* is about to get deep! And please understand, due to the sensitive NATURE of my tale, I simply must type in veiled and vague language to avoid the possibility of further discomfort. (DISCLAIMER ENDED)

I've been thinking a lot about *shadows* today because I am currently experiencing an emotional conflict with someone in my life. This *conflict* has been raging for many months now, but I've had a heightened AWARENESS of it only recently. I've even gone so far in my OWN mind to entertain the notion this *conflict* may have been part of the catalyst to my recent relapse...well, that and running myself physically ragged with abandon. Whatever. As my mother used to say, "It's six of one and half a dozen of another"...whatever the heck THAT means!

But suffice it to say, whether or not the *conflict* played a key role in my physical decline or I am simply more FOCUSED on it BECAUSE of my physical decline (after all, what DOES one do with multi-hours stacked upon hours of cabin fever and little else to distract other than navel lint gazing!?!), this *conflict* has been secretly lurking about in the *shadows* of my brain.

Swiss psychoanalyst, Carl Jung, was one of the first in the psychoanalytic field to discuss the concept of *shadows* and how this relates to the unconscious. He was once quoted as saying, "Knowing your own darkness is the best method for dealing with the darknesses of other people.” Jung believed that in each of us (our psyches) there exists areas of unconscious thought/experience/perception, which drives us to project our own experiences and way of seeing things onto another...whether that perception is TRUE for the other person or not...WE believe it to be so because of the processes in our own minds.

The term, "projection", is still a common term that is batted about in the psychiatric field like a ping pong ball. For example, we might refer to a client *projecting* their past anger toward their mother into an experience today because a situation TODAY reminds them how they FELT when dealing with their mother in the past. Often times, the FEELING is real in present day terms, but the level of INTENSITY is purely related to something in their past.

So, just to totally cause you to get a concussion from hitting your head on your computer monitor while falling asleep reading this, Jung also said, "Just as we tend to assume that the world is as we see it, we naively suppose that people are as we imagine them to be. In this latter case, unfortunately, there is no scientific test that would prove the discrepancy between perception and reality. Although the possibility of gross deception is infinitely greater here than in our perception of the physical world, we still go on naively projecting our own psychology into our fellow human beings. In this way everyone creates for himself a series of more or less imaginary relationships based essentially on projection." It is the latter part of the above quote I am focusing on today - everyone creates for him/herself a series of more or less imaginary relationships based essentially on projection.

In my current *emotional conflict* with this "other" person in my life, I am aware issues between us have an intense, spiraling effect on me. Things said, actions taken, or words written by this "other" create a literal physiological response in me that is highly exhausting. I become extremely defensive and protective as well as down right rageful internally, while all the while trying with futile effort to project into my external world a voice/presence of calm and tranquility. I even find myself becoming angry that I feel I HAVE to "pretend" in this manner, when what I am really feeling borders on homicidal! I generally think of myself as a person who (I believe) is slow to anger, but also very, very, very sloooooow to forget what has created this feeling inside me. Yes, I DO hold a grudge...if we're playing the honesty game here.

I've gone so far as to make a list of the behaviors in this "other" person that annoy/anger/frustrate the hell out of me. Lists are good, right? Lists are a way of giving a physical presence to a thought. Lists are a way of taking concepts and ascribing words to the concepts, thus making the concept "real" or concrete. Lists are a way of organizing our thoughts.

Unfortunately (although Carl Jung just turned in his grave to say "bravo"!), lists can also serve as a mirror. And in the case of making the list of annoying/angering/frustrating behaviors of this "other" in my life, I began to note words on my list in which I *resemble that remark*. LOL

You see, the very things I read on my BITCH LIST about the "other" in my life slowly became recognized as the very things I struggle to NOT judgmental, not truthful, holding a grudge, manipulative, sneaky, grandiose, etc. As painful as it is to admit, ALL of those characteristics exist inside me, too. They are my SHADOW. And, although I work to project what I want to believe are *better* characteristics of who I am as a person, those *shadow* characteristics still remain inside me...locked in a time and space when their development was initiated...during life experiences where I learned coping mechanisms to survive psychological attack.

My favorite and final quote by Jung is this: “The most terrifying thing is to accept oneself completely.”

And to translate, this means, "the crap I despise the most about this "other" in my life, is the very crap I fear being consumed by in my own mind. The very characteristics of this "other" that cause such a visceral reaction in my life are the same parts of my character I run from or attempt to hide away."

Don't get me wrong here...I STILL can't stand this "other" in my life and I STILL feel angry in their presence. Change takes time. Sometimes anger at injustice is appropriate. But at least now I know the root cause of my reactions and I can begin to assume responsibility for changing ME...I can turn and face my *shadow* and not be so terrified by the darkness.

After all, *shadows* only exists because there is a light shining somewhere...

Fire In The (lesion) Hole!...

I swear to you my house was on fire this morning.

I became aware of a hot, radiating heat that was coming from somewhere outside my bedroom. I could smell popcorn popping, which I KNEW was oddly strange for such an early time of the day. I heard voices outside my door and had the distinct impression my neighbor was popping the corn at barely Dawn's crack, which disturbed me more than annoyed me. Suddenly I put two and two together and realized my neighbor had most likely set the house on fire with a popcorn popper that had overheated!

I dashed out of my front door in complete alarm and panic, frantically searching for the source of the heat, and expecting to find flames dancing around my house. All I found was a stack of smoldering debris, but the heat it produced was quite intense. I sensed at any moment the stack would burst into uncontrollable flames and my house would be consumed.

I yelled at the neighbor to find water...ANY source of H20...and to begin dousing the smoldering debris pile while I called 911. Cell phone in hand, I tried repeatedly to dial those three, simple numbers, but my fingers kept hitting the wrong buttons...which only increased my panic more. When I finally managed to hit all three buttons in sequence, I was connected with the local sheriff's department, who promptly put me on *hold*.

"WTF?!" I screamed into the phone. "My effing house is on fire and I need the fire department here stat, you *$*#(@er's!"

I redialed 911 and got an operator who said, "Just a minute"...I could audibly hear her lay the phone down and walk away. The heat from the debris was becoming intolerable as I watched my neighbor fumble with a small garden hose that only produced a trickle of water, creating more steam than defense.

Then, just as I predicted would happen, a burst of flames shot upward into the sky, and I fell backward from the flash of hot, humid air pressing against my chest. **Fortunately...this is where I awakened from my nightmare.**

It took me several minutes this morning to realize there was no actual *fire* dancing around my hut. I was completely disoriented and drenched in sweat. THIS part of my tale is no dream. I had thoroughly soaked my bed sheets in perspiration and my cheeks (on my face, silly!) felt sunburned...later when looking in the mirror, my face DID appear *burnt* in some strange fashion.

I have spent the day home AGAIN from work, recovering from "something" that took over my body in the night. Dizziness abounds as has weakness and fatigue. I thought I was *over* this...I thought my relapse (if that really IS it's name) had packed it's bags and moved on. I was not prepared for this set back...apprehension and melancholy have plagued my thoughts much so, I have been unable to complete the most simple of tasks. Like remembering to take my daily medications (which has happened twice this week and COULD account for some of my disorientation! DOH!).

I don't know where my day has gone...but I clearly recall how it started. And now, as I prepare to drift off into Slumber Land again, I'm hoping whatever smoldering fire might be lying in wait will decide to burn itself out without disrupting my sleep again. Lest I spontaneously combust...

Wednesday, October 22, 2008

Wish I Had Something Earth-Shattering To Say...

But, I don't.

I am surviving post IV Solumedrol withdrawal at the moment. My last dose of a three-series was at 10:00AM on Saturday and I am now (hopefully) on the downward side of the roid wave. Dr. She Who Will Not Be Named no longer does the mean Prednisone taper as it seemed to always shall I say? CRAZINESS. So, I am left to fend for myself with maddened adrenal glands and shocked hormones trying to rebalance an already delicate (and slightly off kilter) biological system.

As always, the steroids provided immediate relief from the horrendous fatigue. Oddly though, I think my system was already running on fumes by the time the IV Soly was introduced as I felt only a mild flight into mania this time around...which is unusual. Generally, I am able to complete a full toothbrush cleaning of my entire baseboards at 4:00AM by day three of the IV's. LOL

The bizarre facial tics and trunk tremors did subside as did the dizziness...until today...sigh. The "tics" and "twitches" have not returned, but the dreaded dizziness has begun to resurface, leaving me feeling once again uncertain of my footing and giving consideration to hurling the 500 pounds of food I have been packing down my gullet while on the steroids.

Steroid withdrawal always leaves me feeling some strange sense of disconnect from my if time is passing by outside my eyes, just not INSIDE my head. Random and tangential thoughts fly by as do completely unrelated bursts of emotion. None of my thoughts seem to come with handles is quite difficult to hold onto one for more than a momentary touch, until it slips restlessly away from my hands like a slick water balloon. And then, I'm on to the next thing that enters my mind unannounced. I've found that good old fashioned napping is about the best source of comfort while I pass the "crazy" through my system.

Speaking of naps...I woke up this afternoon with the TV chattering at me in the background, only to discover one of my favorite people was featured on one of my not-so-favorite TV shows...Oprah. Dr. Jill Bolte-Taylor (you may remember her from this post) was talking about her book, "My Stroke Of Insight - A Brain Scientist's Personal Journey". If you haven't seen her brief talk linked to the post on CHEESE or read her book, briefly I will say this woman suffered her own stroke, which nearly killed her. She has a fascinating tale and way of telling information about the brain--someone I highly recommend checking out.

Anyway, not to "out tangent" myself here, I *came to* from my nap just as Dr. Bolte-Taylor was discussing with Opie the event that led to her mother's arrival at her ICU bed shortly after her stroke. Dr. Bolte-Taylor had blown out part of her brain and had no word or number recognition when everyone was talking about "GiGi" arriving, she had no ability to recall or discern WHO this person was. Turns out, GiGi is/was her mother (who also happened to be in Opie's crowd while her daughter talked today).

I sat on my couch and listened to Dr. Bolte-Taylor talk about how her mother entered her ICU room, nodded at the doctors/nurses, and then without hesitation, walked over to her daughter's bed, pulled back the sheet, and crawled into bed with her. She lay down beside her daughter and simply held her...which was the only thing Dr. Bolte-Taylor COULD feel.

The camera on the TV show cut to "GiGi" and there was this mother of a brain scientist sitting elegantly crying...she wiped her eyes and said, to this day, hearing or talking about this incident remained difficult for her because it brought up so much emotion...not knowing if her adult child was going to live or die...she did the only thing a mother COULD do. She crawled into the bed and held her child.

I know the steroids pulsing out of my body are/were the major catalyst behind the tears that flowed from my eyes as I watched this touching moment on TV...I know the steroids make me crazy-emotional.

But in that moment in time, all I could think was, I hope when/if the day comes that I cannot feel, or hear, or see, or I remain precariously balancing on that mysterious ledge of life, someone...ANYONE...gently pulls back my covers and crawls into my bed. That someone...ANYONE...holds my place for me and finds me wherever I might be amid biological chaos.

And if it is my time to go...someone...ANYONE...gently carries me over the bar back *home*.

Sunday, October 19, 2008

Getting Back To The Tysabri Issue...

Still functioning marginally well with the IV Solumedrol on board, and wanted to get posted up some preliminary information about Tysabri infusion sites. I have much left to tell about my Club Med ongoing battle of the "bull" and my complaints about their charges/costs to distribute this drug to me once a month. I'll be getting to that soon.

But I've begun to notice a lot of "hits" here on CHEESE of people searching for Tysabri information SPECIFICALLY relating to cost, so I wanted to address HOW to find a TOUCH certified infusion center near you and HOW to go about determining what they are billing/what questions to ask to see if you are eligible for their services at a possibly LOWER distribution fee than where you are getting your TYSABRI infused now (or are considering getting it infused, as the case may be). is the website to turn to when looking for infusion information. When you first log on to the site, you will get THIS screen:
You have to click the orange button over there for "Multiple Sclerosis Tysabri Patients" to be taken to the next screen, which looks like this:

Now, here is where the Tysabri folks don't necessarily make things easily clear on their website (and I have talked with a representative about this in hopes changes might be made). Off there in the far right hand corner, you may notice a small, red connecting link that tells you to "click here" to find an infusion center near you. It's where the arrow is above.

Click that link, and you are taken to the above page, which will ask you for either your zip code or your state of residence and how far/what radius you are willing to travel to GET your Tysabri. ONLY FILL IN ONE OF THESE LOCATORS...either the zip code or the state...because the site has a tendency to "lock up" if you do both. You can still add your radius location, just not both zip code AND state.

Once you've done the above specifications, the site will soon spit out a list of TOUCH certified infusion centers near you (in whatever mileage radius you requested above). It will give you names of the infusion centers, addresses, phone numbers, how far it is located from your zip code, and whether they are accepting new referrals. I have found the "new referral" issue on the site NOT to be accurate because I've gone ahead and called some that say they AREN'T accepting new patients, and I've been told they ARE. The page will look something like this:

Once you have opted WHICH infusion centers you want to try to connect with, I suggest having a list of the following questions in hand and be prepared to write down their answers for your own notes and reference as well as WHO you spoke to on the phone. If, like me, you call several places, you will find there is a VAST difference in what each of these centers is CHARGING to infuse you! I suggest anyone on Tysabri do their own homework and find a site that BEST meets their personal, travel, and financial needs.

Here are the questions I suggest as a beginning point of reference:

1) Do you accept outside referrals from physicians not affiliated with your program such as ______ neurologist?
2) If yes, are you accepting new referrals?
3) Do you accept _____insurance?
4) If yes, what is the cost billed to ____insurance or paid by ____insurance and does this include the cost of the Tysabri or is the medication provided via an outside specialty pharmacy by my insurance company to you?
A. Or do you have a flat fee billing for every Tysabri patient?
B. Does this cost include necessary laboratory fees?
5) Do you have a "private pay" option?
6) How long have you been TOUCH certified?
7) How many Tysabri patients are you currently infusing?

I'll write more about this later...enough for now, because I'm steroidally challenged and have no more focus here!....


Yes, I HAVE just completed reading well over 77 blog posts on all y'all's blog sites in just under 3 1/2 hours...AND, I have left a majority of comments on the 77 posts as well. I'm sure you are ALL thrilled sh!+less by this steroidally induced accomplishment of mine! LOL

And, you may also note off there to the left side a "Gratitude With Attitude" award I have just received from Lisa over at (one more link here because I just CAN'T seem to link Lisa enough!) Brass & Ivory , which requires me to link up ten MORE of you bloggers out there in the Ethernet World. I have cheated a bit on the rules however (because I've never met a rule I couldn't break), and I have NOT gone back to your blogs and left you a comment letting you know I have linked you to this award. You'll just have to come here to CHEESE and read about yourself...well...YOURSELF! And collect your OWN stinkin' award over there on the side bar.

Because I'm way to bleary-eyed to return to ten more blogs to leave a comment telling you to get your arses over here and pick up your infamous award...

Steroid Mania Out...

Friday, October 17, 2008

Too Hi Larry Us NOT To Reprint!...

Mkay...I'm way too steroidally challenged tonight to type sensible sentences! But, I got a WONDERFUL email from someone who's identity I will keep anonymous for the moment (because I asked NOT permission to reprint this as I normally would...bite KNOW who you are and you'll just have to find it in your pink heart to forgive me...eventually!). The email was in response to my question embedded in the previous post regarding where the term "buck up" came from. I also got a comment response from Lisa over at Brass & Ivory (is there some kind of prize for linking her on CHEESE, since I seem to be doing this on a regular basis? Sorry Lisa...sort of. You're stuff is just too good NOT to link!) that I'll reprint here in case you missed it.

So, here's the BUCK UP email:

I’m usually good with words so I decided to answer your “buck up” question. First off I was wrong about the meaning. I had always thought it meant to toughen up as opposed to cheer up.

I am usually very suspicious of Internet definitions and word origin stories because most of them are bullsh*t. But since I do not own an OED I had no choice. I came across the exact same origin story on dozens of different sites. Which must mean it’s true. Or that ‘cut and paste’ has become the soul of research!

This sounds feasible to me. After the history bit I’ve included several variations that might also apply.

It suggests somebody should cheer up, and not be downhearted or oppressed by circumstances. It is a phrase from nineteenth century Britain, derived from those bucks or dandies who were regarded as the acme of snappy dressing in the Regency period. (In its turn, that word came from buck in the sense of the animal, and had a slightly older meaning still that suggested male gaiety or spirit, with unsubtle suggestions of rutting deer.) In its dandified sense buck up first meant to dress smartly, for a man to get out of those comfortable old clothes and into something drop-dead gorgeous. Since to do so was often a fillip to the spirit, the phrase shifted sometime around the 1880s to its modern meaning.

buck up "cheer up" is from 1844

1. Lye or suds in which cloth is soaked in the operation of bleaching, or in which clothes are washed.

Buck\, v. t. 1. (Mil.) To subject to a mode of punishment which consists in tying the wrists together, passing the arms over the bent knees, and putting a stick across the arms and in the angle formed by the knees.

Buck\ (b[u^]k), v. i. 1. To copulate, as bucks and does.

3. (Mining) To break up or pulverize, as ores.

1. to strive with determination; "John is bucking for a promotion"
2. resist; "buck the trend"

To pass (a task or duty) to another, especially so as to avoid responsibility:

3. an impetuous, dashing, or spirited man or youth.
4. Often Disparaging. a male American Indian or black.

Often disparaging? Often? Meaning there are times when you could refer to an African American male as a buck and it not be taken badly? Maybe I should try that next time someone is talking about Senator Obama. He is certainly dashing and spirited.

I’m glad you are not having a stroke. I like the idea of a betting pool on your longevity – put me down for ten bucks on you living to see 2070. Then you can say – “I lived through the seventies once; I’m not doing it again!” And then you may drift gently into that long goodnight.

And then, there was Lisa:

Ok, now you knew somebody has to do this:Taken from World Wide Words: Buck Up! - [Q] From Charlotte Heimann: “I found myself urging a dear friend to buck up! in spite of his having been given a distressing medical diagnosis. Why would I say that?”[A] We use it now to suggest somebody should cheer up, and not be downhearted or oppressed by circumstances. It is a phrase from nineteenth century Britain, derived from those bucks or dandies who were regarded as the acme of snappy dressing in the Regency period. (In its turn, that word came from buck in the sense of the animal, and had a slightly older meaning still that suggested male gaiety or spirit, with unsubtle suggestions of rutting deer.) In its dandified sense buck up first meant to dress smartly, for a man to get out of those comfortable old clothes and into something drop-dead gorgeous. Since to do so was often a fillip to the spirit, the phrase shifted sometime around the 1880s to its modern meaning. It seems to have been public school slang to start with, probably from Winchester College, and rather stiff-upper-lip British. It could suggest that the person being addressed should stop acting like a wuss, ninny or coward, as here from Edith Nesbit’s The Wouldbegoods of 1901: “Be a man! Buck up!”, and was something of a cliché at one time in stories of Englishmen abroad bravely facing adversity. From the early years of the twentieth century, it could also be an injunction on somebody to get a move on or hurry up; here’s an example, from D H Lawrence’s Sons and Lovers of 1913: “ ‘Half-past eight!’ he said. ‘We’d better buck up’ ”.Now, I thank Anne for throwing the BOOT at our dear Cheese. And Jen, that eye is a little disturbing. For some reason, I didn't see it with your comment at my place a few days ago.

OK, I'm off to "buck up" some more...WHATEVER that means!...

Thursday, October 16, 2008

Relapse? Who'd A Thunk It. (Obviously Not Me!)...

OK, not THAT kind of relapse in the picture!

Thought I'd best get this posted ASAP, given the comments received on my previous post (and yes, thank you Anne for spurring me forward). So, after further consultation with Dr. SWWNBN, it has been decided I am having a relapse...quite frankly, THAT thought never crossed my mind, given the *roving and mystery neurological symptoms* I have been experiencing. Oh, and the fact I have been taking Tysabri for over 6 months.

I have yet to read of ANYONE having a relapse while on Tysabri...although, after being hit in the head with a shoe via email from Lisa of Brass & Ivory (and thank YOU, too, Lisa as the voice of reality! LOL), she pointed out that even Biogen Idec doesn't boast 100% relapse-free while on Tysabri in their literature. DOH! *Reality* has never been my forte...sigh.

So, I bucked up (what DOES that mean really and where did the saying "buck up" come from? Lisa? Anyone???) and went in this afternoon for my first dose of three Solumedrol infusions. I suppose IV Soly beats lying around pensively speculating if I'm having a stroke or something worse occurring in my noggin.

And for the record (whoever is keeping one), the REASON I auto-pilot into Strokeland whenever I have such unusual neurological symptoms atypical for MS or my personal history with MS is this: My mother died in my arms from a massive aneurysm. aneurysm is not the same as a *stroke*, but that's sort of splitting hairs when it comes to Post Traumatic Stress Disorder, worry, and sudden brain death! Add on an ounce of nursing knowledge and 22 years in the field, and I can soooooo go there sooooo easily.

I'm seriously hoping the IV Soly changes this dizziness into something more maybe GONE? That would be a wonderful outcome. Not to mention, I'm rather looking forward to my piece of the Mania Pie that comes with IV steroids, since I've been so incredibly fatigued/exhausted for the past freakish-almost-week. And these tics and twitches in my face would so totally NOT be missed if they went I asking for too much here?!?

So, thank you again to the many commentors (and also the emailers AND silent readers who I can only ASSUME send well wishes...unless you are only reading CHEESE because you've got bets on my longevity?!?) who slapped me to my senses as well as gently reminded me to take some action. I can't report any change in symptoms (I just had the Soly 4 hours might seem a bit "odd" if I COULD report changes, doncha think?!) as of yet, but I'm hoping Dr. SWWNBN is correct in her assessment...rather than just trying to shut me the hell up with some steroids and cease the slow release air-balloon-whine I've been squeaking about.

And, as Lisa said privately in email, "at least you've got some groceries"...which is SO funny, yet painfully true to an MSer on steroids about to eat their way through the next three days...sigh...


OK, not the kind in the my face.

Day TWO of staying home from work to *rest* while attempting to ward off whatever dark monster is lurking just under my neurological surface. I actually BATHED today...felt it was time since I was beginning to stick to the couch. I DID momentarily feel refreshed and a bit renewed, so of COURSE I thought it wise to try to venture out into the big world and test my land legs again.

No sooner had I arrived at the store to forage for food, I began to feel dizzy again, my vision started to fade in a weird blurry-sort-of-tunnel-type way, I felt immediate exhaustion, and...MY FACE STARTED TO TREMOR. I swear on all that is face started shaking like an off balance washing machine! and exciting, you say?

No, not really and the episode passed nearly as quickly as it came on after I sat down in the store to gather my wits about me. I managed to make it home with groceries in tow and just in time to fly down my steps to give offering to the porcelain god with whatever I had just eaten in the past 24 hours...I'm all cleaned out now. Perhaps I should consider signing up for a colonoscopy and take advantage of my situation??!!

I just checked my GoogleReader...61 posts by all y'all out there. They will just have to wait for a time when I can concentrate on your words. For now, I'm going to snake my way into my bed and visualize myself floating down a peaceful river...something without any waves or tremors...

Wednesday, October 15, 2008

The Truth Of The Matter Is...

Ever feel like your brain is lying to your body or visa versa? The truth of the matter is, I'm really not sure WHICH entity is lying right brain or my body.

Yesterday evening, I returned home from work and was sitting at my computer checking email, etc., when all of a sudden I felt "funny"...not *ha ha* funny, but peculiar funny. My brain felt "sloshy" and I realized I was listing to the left...feeling as if I was leaning in the general direction and having a near vertigo-esque moment. I decided this was most likely due to staring at a computer screen in a darkened room, so I got up to head to my living room and escape the visual screen. This is when I realized I was doing more than just *listing* to the left...I was actually FALLING to my left side.

In what can only be best described as an *alcoholic sway*, I finally made my way to my couch to lie down in hopes of regaining my equilibrium...once supine, life felt balanced again. Of course, I began the mental process of trying to figure out WHAT had gone wrong at the end of a typical day. Perhaps it was something I had eaten? Maybe my insomnia had finally caught up with me? Too much time at the computer? PMLTysabri brain? Could it be another MS exacerbation? Stroke? My mother died from a ruptured aneurysm...these were the thoughts rolling around in my head.

After remaining flat for several minutes and feeling a bit of relief, I decided the *episode* had passed, and I needed a drink of water. I sat up...the world seemed "normal"...stood up, and began to walk across the room to the kitchen, only to find I was once again weaving to my left and clumsily stumbling. WTF?!?

By this time, the weaving was creating a dizzying feeling in my head, which set off a low grade bout of nausea. Nothing else seemed out of kilter...just the dizziness and weaving...something I have not ever experienced before. My rational mind began clicking through the list once again of WHY and WHAT I might be experiencing...nothing *good* was popping into my mind and I felt myself becoming more and more anxious with the dreaded unknown. I got the bright idea to take a warm bath to settle my nerves and contemplate if 911 or a trip to the ER was in my near future...after should never go to an ER wearing the smell of a day on them.

Once in the tub (after weaving my way to the bathroom), my world settled down again...temporarily. Once out of the tub, I promptly fell into my counter top sink, and an internal panic began to set in. WHAT THE HECK WAS WRONG WITH ME? Was this it? Was I finally having that stroke I have all too often joked about? Would I simply fall into a coma only to be found days later due to the stench of rotting flesh in my home? Yes, dear ones...this IS where my mind goes in these moments. LOL

I decided the only thing I COULD do...the BEST response...was to simply take a handful of muscle relaxants and benzos and go to bed. Yup. I didn't call anyone. My rational mind had settled with the notion if I WAS finally having that *joke stroke*, I would hopefully slip quietly away in my sleep.

Obviously I did not die in my sleep nor did I have a stroke (as best as I can tell today). I have no idea WHAT this episode is...I awoke this morning still feeling clumsy and with numbness in my right hand and left side of my face...two symptoms that are NOT new to me...the numbness. I also developed a tight band around my lower torso by morning, which is also not a *new* thing to experience. I emailed Dr. She Who Will Not Be Named my latest "report" and she promptly emailed me back, telling me to "come in and get a MRI and a UA (urinalysis). I emailed her back saying "no".

I have spent the day today home from work and still wondering what in the heck is wrong (or right?!) with me...I seem to be no worse than last night, yet remain pensive as to WHY I am experiencing these symptoms now. I am faithfully complying with monthly Tysabri...I *shouldn't* be experiencing a relapse by statistical data. Yet, I've got no other explanation for feeling this way. I have slept most of the day today and STILL feel crappy. I just don't know what to make of this...

And the truth of the matter is, I think I've lost my will to care for the moment... :-(

Monday, October 13, 2008

Under The Weather...

Literally and figuratively...storms are brewing outside while something feels off kilter inside. I seem to be having a "spell" this evening, listing to my left, which came on quite suddenly. Heading to bed now with hopes all *clouds* will clear by morning...

Saturday, October 11, 2008

Where's Wall DOH!...

As Wall Street crashes around us this week, yours truly, Wall Doh! has been missing in action here on's not for lack of WANTING to post things. Oh, golly no! It's been for lack of TIME and ENERGY.

This week or at least the past 5 days has dragged on and felt like 5 months of time passing...and unfortunately, because much of the *content* of my life these past several days involves highly classified and top secret information, I am simply not at liberty to discuss details on this ever-so-public blog...lest I risk being killed. LOL OK, perhaps that IS a bit dramatic...but several *issues* have occurred in my work and personal environment that I AM not ignorant enough to publicly disclose here due to the sensitive nature of the content (because one can never be certain WHO might be voyeuristically peering into the World O' CHEESE and taking notes...*cough, cough...employer, cough, cough*). Suffice it to say, it has been a rather stressful week.

I received a dose of Tysabri last Friday, which started my weekend out with a "bang"...I spent Saturday and Sunday recuperating from the body aching side effects post infusion (which actually weren't as bad as some previous post infusion events this time around). On Monday, *events* at work created a combustible environment and, as they say in the dog training world, "Leave it!", I won't be going into details about THAT issue, but it HAS been keeping me very preoccupied all week.

On Tuesday, I finally got that haircut I have been needing for about a month now...ran errands (as it was my day off this week), did some shopping, fed the neighbor's cats (which I managed to successfully do ALL week without once risking starving them to death!), watched the pitiful presidential debate, then met another friend for dessert late in the evening.

Wednesday began with completing a few more errands, visiting a friend in the hospital (which I also did every day this week, except Tuesday...because I do NOT trust the health care delivery system to keep those that are dear to me ALIVE without constant monitoring. LOL), and returning to work...very *busy* there.

Thursday, I set an alarm so as to get downtown in time to meet a friend and colleague who I met via many State Committee meetings, only to discover I had the DATE wrong for our meeting and we are getting together NEXT Thursday (this is where the Wall DOH! comes in). I wasted no time bee-lining it to Top Pot Doughnuts downtown with the excuse of picking up a treat for my hospitalized friend (but really needing my OWN doughnut fix), flying back home to change clothes for work, stopping by the hospital, then returning to work.

Today, Friday, I retrieved said friend from the bowels of hospital hell, ran by to pick up some grub to eat (since the refrigerators were bare in BOTH our homes), changed clothes again, and returned to work.

I have spent so little time in my own home this week, my cat no longer recognizes me and I fear she has secretly listed my home on eBay while I've been away...with plans to sell to the highest bidder offering a lifetime supply of her favorite cat treats. She's definitely a CHEAP cat, but she's not free...LOL

I am so hoping to get caught up (once again) on my blog roll reading, spend the weekend staring at my walls and drooling, and basically reconstituting what used to be a rational brain...full of MS lesions, yes...but RATIONAL. I'm definitely fatigued and exhausted at this point. I DO hope to get you updated on changes over at AOL Journals, Tysabri pricing issues, more on Disability Employment Month, and an assortment of other topics I am sure you will find titillating (huh, huh, I said tit). But for now, I am needing to return to the Bat Cave and (as my good friend "T" says), "slow my roll".

I'd inquire how YOU are doing, but as you can see, I am utterly self-absorbed and any inquiry would only be an attempt at a false sense of projected concern, which I am certain YOU would see right the World O' CHEESE, the spotlight remains painfully focused on Moi...much like the harsh lighting of an interrogation...sigh...

Monday, October 06, 2008

Forgot One!

Webster reminded my sieve brain of her blog over at Halt Stop Forget Relax . Duly noted now, my friend...duly noted!

Sunday, October 05, 2008

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 limp PROUDLY 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 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 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:

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...