Thursday, December 6, 2012

When MS Takes A Stranglehold

    Well hello!  Yes I am still around, but in a bit of a capacity of turmoil and deficit thanks to the riggers of MS.  After the fourth attempt to refine the intrathecal baclofen pump, surgery rendered me incapacitated as I spent a very long three weeks in St. Joseph rehabilitation working as diligently as possible, but leaving in pretty much the same condition as the admittance.
     MS is a mean, ugly, and variable disease.  Aside from personal and emotional turmoil, I have spent several weeks in the fetal position in bed as I recover from surgery and disease progression.  Slowly and methodically I am trying to work on sitting upright, but the etiology of this demon has robbed me of something as simple as sitting upright.  Yes, simple.  Not for me however as I strive for an hour or two upright.  It's horrifying.
     Bits and pieces to get you all caught up:
Complete overhaul of pump and newly revised catheter...
Lots of watching television
Pandora radio
Texting my kids
Watching movies
Bed baths-so humiliating
Fortunately I have plenty of food, and great caregiving, but recently encountered an event that left my most prize possession, friend, and caretaker in a precarious position.  It was 7:30am and business as usual Mom walked down the ramp outside , built for me of course, to retrieve her liberal rhetoric The NY Times, when suddenly I was awakened by her cries for help.  I heard a thud, and the emotional distress from the ramp parallel to my window.  As she was retrieving the paper, she hit a patch of ice and went heals over head and head over heals.  As I lay there a "functional paraplegic" listening to the cries of my mom, a million flashes took over my mind .  The old me would of had her over my shoulder and inside within seconds, the new me lye there as my heart felt as it was being torn from my chest.  I could do nothing, and whereas the story is not about me, it surely helped to solidify the damage this fucking disease has insulted me and devastated us all with its effects.  It's difficult not to take responsibility when for it not had been for a pump refill that morning she would still be in bed.
     The ambulance soon arrived and carted her off as my hired and caring caregiver Kim graciously took me to the appointment.  My incredible and loving sister Dana flew in from Florida in what seemed like minutes along with my father who was in Florida preparing for surgery as he battles spinal stenosis. My older sis was stuck in Chicago otherwise she would have as we'll.
     So, whereas I wish I had better things to report, this is real life, the horror, the randomness, and the reality of a family giving up on trying to figure out the answers, but coming together and following the notion if you're going through hell, keep on going.....that's it for now as I sign moms bright orange cast consuming her broken ankle.