Sharing the lessons along the way…

Sum It Up Sunday #10

Photo Catch Up

It is Sunday catch up time!  This week flew by in a teary blur.  It began with less anxiety about my decision to remove the intrathecal baclofen pump. I was pleased at how I had figured out how to manage it better each week leading up to this one.

Then it was Tuesday and instead of a general anxiety from anticipating the final decrease in baclofen, I found myself in states of panic and melting down.  The jerky legs and arms, a new burning sensation all over my skin when I am hot or my muscles are active, and the finality of no longer having a pump seemed to finally hit me.

It hit me harder than I anticipated and I even had a couple of hours of wanting to keep the pump by Wednesday. I was ready to postpone the surgery if I continued to have those thoughts through the weekend.  I was angry for having to make a decision like this to start with and really went through the gambit of emotions.

On Thursday, my pump started sounding an alarm.  Every five minutes for eight hours and then every ten minutes until I could get it programmed to stop on Friday.  It seems each time I wonder if I am doing the right thing by having it removed, something about the pump reaffirms my decision.

The alarm experience was about 30 hours and by the end of that, I had gotten more used to my jerkier legs.  While the added bit of clonus makes my leg shake too much when pressing on the brake in the car, I still believe I can rehabilitate enough to be back behind the wheel after recovering from surgery.  I can make a car brake, but because the clonus still freaks me out, I am not driving.

I am still getting around my house fine, doing short distances with the cane (and still considering a walker could be helpful at this point), walking the dogs in the power wheelchair, and tootling around the Homeless Emergency Project campus with Duke in a power chair.

My stationary bike is a jerky and burning ride now, but that didn’t stop me from doing it anyway.  I can’t afford to let it stop me from doing it anyway.

I can work with this level of illness symptoms and progression.  There are still many things I haven’t added to the mix to better manage it.  If this is as bad as it is going to get (even with some worsening after surgery), then I’ve got this.


Comments on: "Sum It Up Sunday #10" (4)

  1. Sounds like this was a week where ‘2 & 2’ = way more than 4 !

    Indeed, You have got this !!!


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