Wednesday, May 12, 2010

"MS" Beyond the Diagnosis! (Part 1)

I treated and taught many patients with Multiple Sclerosis before being diagnosed myself in 2005.  My first experience with an MS patient was my defining moment with my perception of the disease.  The image of a bedridden, contracted, suffering soul, trapped in a body covered with bedsores, blind and unable to speak above a whisper, was forever ingrained into my mind.  In fact the majority of the patients I saw with MS were very similar.  I remember the shiver that went up my spine and the complete feeling of terror at the thought of a being this way myself, or watching family suffer this way.  At the time, it was just a fleeting thought, never a serious concern.  I think it was just my nursing mind and my heart developing the deep feeling of empathy I had for my patients.  Never did I actually, seriously,  picture myself in that bed. 

Over 22 years I saw patient after patient in various stages of MS.  Each situation was different, even though most shared a lot of the same symptoms.  A couple of years before I was diagnosed, our home health agency began doing teaching for new Copaxone patients.  I traveled across two counties teaching patients how to give themselves Copaxone injections.  Ironic I know!  I learned a lot about the disease during that time.   Even knowing all the signs and symptoms, I, for whatever reason, ignored or wrote off my own multitude of symptoms. It took trip to the emergency room with chest, neck, and face pain, coupled with the persistence of my family doctor, to finally make the diagnosis, and make me believe it.  In less than a year my vision started to go, leaving me legally blind, and my balance went out the window.  All the professional knowledge which I prided myself in having, went out that window too.  No words could describe the sheer terror and panic that engulfed my mind when the final diagnosis was presented.  Suddenly all the previous episodes of so called "vertigo", extreme fatigue, pain in my hands and feet, headaches, and depression, started to make sense.  It was way to easy to write it off to being obese, diabetic and stressed.  The graphic images,  burned into my head, of all the bad scenarios I had ever seen, came crashing down on me like a tidal wave.  I substituted my face on each scarred and twisted body I had ever tried to comfort.  The looks on the faces of the family members, as they watched their loved ones wither away, was something I could not stand for my family to bear.  I did not want to be a burden on their lives.  I did not want to be trapped inside my body and not be able to communicate.  I did not want anyone to wipe my butt.  I did not want anyone to dress me.  I did not want this.  I cried out to God, I asked him why.  He did not answer..., at least not then.  I wanted to just go away, close my eyes and disappear.  I begged God to take me.  He didn't... and I thank him now. 


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