Sharing the lessons along the way…

My Tower of Toilet Paper (overhead view)

My Tower of Toilet Paper (overhead view)

It was an ordinary morning.  The dogs woke me as the sun was rising.  I made coffee, checked my email, fed the dogs, and took them for a walk.

I showered, put on my big girl panties, and rehearsed what I was planning to say at my pump doctor appointment.

I was surprised I slept without waking up more often worrying about this particular appointment, as I usually do before most doctor appointments.  I felt surprisingly well rested.

The closer it got to time to leave, the more anxious I got.

Was I really ok to reduce the baclofen dose in the pump today if it made sense to do so?  That was the agreement I made with myself two weeks ago when I called, but would that be what I would do at the doctor’s office?

I made it out the door, down two streets then turned around to come back home.  I decided I should at least grab my cane to put in the car just in case.

All the way there, I reminded myself that I had my big girl panties, and that would make me tougher than I felt.

The doctor told me it was going to take quite a while to reduce down the dose before surgically removing it.  He will reduce 10% each week until it is basically at no daily intrathecal baclofen.

We discussed a few other things before he said, “I will go get them to reduce you today.”

I am certain I looked like a deer in the headlights as I wimpily muttered, “I am not sure I am prepared for that today because I drove myself.”  He explained that it would likely take 24 hours before I would notice much of a difference, but it was ok if I wasn’t ready today.

Dammit, I thought to myself.  But I have my big girl panties.  I followed up quickly with, “Oh, well, if that is the case, then sure, let’s do it.”  We bantered around between a 5% or 10% reduction and agreed that 5% would be best for today since I wasn’t quite prepared.

Honestly, I couldn’t be any more prepared in terms of assistive equipment.  I checked off nearly everything I had hoped to get ready before this decreasing started as of last tower front view

Seeing the power wheelchair in my kitchen that I will use to walk my dogs went from a “check” to more reality than I felt prepared for Friday.

Seeing the new front entrance ramp completed on Saturday was another dose of reality that I wasn’t sure what to do with.

It is only Tuesday.

So, I stopped on the way home from my first baclofen dose decrease to buy some toilet paper—two 18 packs to be exact.  It is a challenge to take a picture of the toilet paper tower so far, but I have a ridiculous amount of toilet paper in my little bathroom.



Comments on: "Toilet Paper Towers, Big Girl Panties, Etc." (4)

  1. I hope it’s 4 ply T!


  2. Boy can I understand your anxiety. I am really proud of you. You’ve got guts inside those big girl panties!


    • Thank you Pat! I don’t know about guts, but at least I mustered up follow through. 😉


      • I think it was General McArthur who said that courage wasn’t the lack of fear but doing what needed to be done in spite of fear. You did it, and will continue to do what you think is best.


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