Friday, March 31, 2006


     I thought it might be of some connecting benefit to include a poem I wrote in 2003 when I literally suffered through the daily shots of Copaxone.  Although not currently on any of the ABC drugs (Avonex, Betaseron, Copaxone) commonly prescribed to help control the progression of Multiple Sclerosis, I vividly recall my daily struggle of "medication compliance".

     Perhaps more importantly if you have MS, you may connect to the deeper meaning of this poem that speaks to the betrayal we sometimes feel from our bodies and the emotional cost we pay in trying to maintain that delicate balance of body and soul.


                          It is not the needle itself
                          That stirs such insult
                          Inside my soul.
                          Hollow and cold,
                          Made of harmless stainless steel
                          Each puncture of my skin
                          Is such a mindless act.
                          A daily repetition,
                          As simple as brushing my teeth
                          Or combing my hair.
                          The needle's depth
                          Does not stop
                          At the surface
                         Of my skin, however.
                         The puncture goes beyond
                         The outer flesh of my being
                         And penetrates my
                         Most sacred and private
                         Hiding places within,
                         Leaving tiny, little holes
                         In the fortress walls
                         Of my soul.
                         I feel vulnerable and afraid
                         And saddened 
                         By the mortality
                         Of my physical self
                         That I should need
                         This needle's daily delivery
                         Of medication
                         Designed to prolong
                         My body's existence.
                         I am angered my body
                         Has betrayed the rest
                         Of my being.
                         It is only just my flesh
                         Should have to endure
                         This ritual.
                         But my soul cries
                         And bleeds
                         A little more grief
                         Each day the needle
                         Passes through it.


     You know, I didn't ask for Multiple Sclerosis to come into my life. It wasn't like one day I woke up, put on my fresh panties, walked out of my house, went to order a Starbuck's latte, and accidentally screwed up my order by requesting MS versus Soy Milk. It wasn't like that at all. And I don't think just because I used to stare at the "handicapped" rudely when I was five years old that I am somehow now being punished for my sins of the past. I don't think MS came into my life for any logical or significant thing I have done to evoke it. It just arrived one day and decided to stay on, in spite of my clean underwear.

     I have spent countless hours worrying, pondering, and analyzing the age old question, "Why me?", and to date, I have no sane answer. Oh, I'm sure there have been many choices I have made regarding my health in the past that could have contributed to the "Why Me" current question. But frankly, I have friends alive who are healthy and well without MS and they have certainly pushed their vices to the point they should be dead by now. Sometimes I envy their top-notch genetics.

     So, "Why me?" Why you if you are reading this and also have MS? Why does anyone have to have disease? Unfortunately, if you're looking for an answer here to this question, you are certainly NOT going to find one. I have none. The question only stirs more questions inside me on any given day.  And, if I allow myself to dwell in that realm of confusion for too long, I become overwhelmed and immobilized, unable to live the life I now have.

     The soup boils down to this for me: MS is here and I might as well suit up and show up with my fresh panties neatly fitting rather than suffering with a crumpled up wad of uncomfortable underwear.

Trying to productively occupy my time...

     What a reason to start a journal/blog...pure and utter boredom! 

     Actually I am sitting in my home right now "recovering" from my most recent relapse of MS...that's Multiple Sclerosis to those of you not up on your acronyms.  Yes, yet another journal/blog about dealing with a debilitating disease has hit the ethernet.  I got the idea from reading other sites of trials, tribulations, and rants about Multiple Sclerosis and I decided, "Hey, why not write my own?  Surely I must have something to say equally as enlightening or at the very least entertaining about the wonders of MS!"  So brace yourself, dear Internet, because here I go!

     I decided to start this entry today by placing a picture of myself on the journal page...and yes, you are correct.  That is a cat's hind end with a clown painted on it because that's just the kind of mood I'm in and frankly, it's really a fairly accurate artist's rendition of me.  My current relapse of symptoms has caused me to feel like I'm on the rear end of a moving beast, out of control of my direction, yet oddly entertained by the notion of finding humor in such circumstances.  It is my hope in starting this online journal, I may be able to discuss all of these issues in an open and honest manner.

     Since my "official" diagnosis of Relapsing/Remitting MS (which will be referenced hence forth via another catchy acronym RRMS) on tax day, April 2003, I have spent the past 3 years trying to fill the holes in my brain with knowledge and insight to better assist me in functioning with my diagnosis.  For those of you newbies who aren't familiar with the disease process of MS (and I won't go into dissertation on it now, but believe me I certainly feel bloated from digesting every study, manual, and book out there on the subject), suffice it to say in simple lay man's terms, MS makes holes in your brain and spinal cord.  Thus, the title of my journal, "Brain Cheese".

     So, if you are a "cheese head" yourself or just searching for some information about MS, I hope this journal might be helpful to you.  But since my world really does revolve around me, I more importantly hope this journal will be helpful to moi.  I will close this entry for now because my fatigue is making it difficult to sit for long periods of time, but I will return soon with more exciting news from the world of MS.