Sharing the lessons along the way…


I wrote the following with little censoring yesterday, and am sharing them with you anyway.  I share them because these words were written in between my meltdown and my dinner distraction that averted a massive meltdown. When I started blogging daily, it was because I wanted to have this all well chronicled, and I needed to process it in writing to better deal with it.  I knew it wouldn’t all be pretty.  Some of it has been pretty amazing.  This is not one of those pretty ones.  It is, however, real.

Photo Credit: Al Taylor (2009)

Photo Credit: Al Taylor (2009)

With each step, there was a jerkiness.  Extending my lower leg made jerkiness.  Extending my hip made jerkiness.  Balancing myself in one spot if my knees are slightly bent made jerkiness.

I kept taking steps back and forth in my apartment—front door to back.  I took deep breaths to try to relax my body in hopes that would slow the jerkiness.  This jerky pacing behavior was not helpful.

I remember this degree of clonus.  I remember worse actually.  Perhaps those memories are what started this meltdown.  All I know is that I went from relatively ok to sobbing in a matter of seconds.  It became that stopping-starting-sobbing that moves your whole body.

I find it fascinating in some respects that the last bit of baclofen I was getting, before they stopped the pump from operating all together Tuesday, made such a difference.

It made a difference in my right hand tremor.  I had to stop texting at one point today because I couldn’t hit the right letters to form words.  Typing on the keyboard seems to be fine as long as I keep my legs still.

I had no real issue at HEP today with Duke.  I was aware when I woke up several times through the night that walking was different.  Yesterday morning, getting up from a floor position became a three-step process when 24 hours ago it was only two.

The spot where the catheter goes in feels better with no medicine going into it, which really reinforces my decision to remove the pump to let that area heal properly.  Except that yesterday between 4pm and 6pm, I wanted to keep the pump.

Today, I have grasped what it means to have no baclofen.  This degree of symptoms is foreign to my recent memory.  My brain says, “Are you frickin crazy?”

From this point in the meltdown, I got angry that I had to make this decision to begin with—it is an awful decision to have to make.

I will not have this surgery if there is any inkling that I will regret it later.  I will postpone it if I continue to have hours of meltdowns where I want to keep it.  Chances are, however, that I will adapt to my new legs as I have each week in a couple of days.

No worries, by 8 p.m. I had some perspective.  I could remember everything I have shared in the past 75 posts since making the decision to remove the pump.  It could be an emotional several days, however, so stay tuned.  😉 


Comments on: "Crap!" (2)

  1. Holly Smith said:

    It better be emotional. This is a big decision you are making, so lots of thought and what ifs are going to continue. I don’t think it would be any other way. If you aren’t always weighing the pros and cons then well, that just isn’t what Tawny would do. And the decision is yours, no one else can make it for you. No one else knows the pain you are in that out weights the benefits of the pump.
    You are a very strong woman, stronger than you think at times. You always find a way to make things happen.
    You got this!!!


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