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.


  1. Good song choice! That is what it feels like living w/ms.
    Sorry to hear about your mom's fall. Good to hear you're home. So "get" what you say in your posts.

  2. As much as I'm so happy to see this post I'm sorry for the events behind it.

  3. Thx Dee and Holly! Not a whole lot of choice:)

  4. Hey Greek, so sorry about the shit storm that you are going through. And I'm heartbroken to hear about your mom. The gods must be crazy.


  5. I don't know if you were aware of this but my dad actually works for NL&SC in GR. He told me to follow your blog, and being the good "daddy's girl" that I am I obeyed. Lets just say that I have laughed and cried reading your posts. Good luck to you, I can't imagine what you're going through, my heart goes out to you. (And if you read my blog, don't think any less of my dad, he didn't mean to raise such a free spirited, foul mouthed girl). :-)

  6. God bless you and your Mum George. I know she made it her lifes work not to slip, only MS stopped you from being there to haul her to her feet. We will not turn this year to summer, the pain and terror are too great but it is only the MS. We were two strong human beings before as were you and your Mum. Wishing your Mum a full recovery and for you some rest.xxxxxxxxxxx

  7. Hope your mum is fling better..and that the pump is starting to work for you....