A Time to Question Fear

A Time to Question Fear

Life has been pretty much transactional since I came home from the hospital ten weeks ago. I’ve had eleven doctor appointments, nine nursing visits, seven medication changes and four resulting side effects that have given this post-sepsis recovery path plenty of detours.

I felt like one of Pavlov’s dogs. Stimulus. Response. Stimulus. Response.

Or maybe it was more like whack-a-mole, where I’ve had to remain on high alert for trouble, ever ready to smack it back down hard.

Each day had become a what-is-wrong-with-me-now opportunity to diagnose and treat.

It’s been exhausting, especially this last go round where my paralyzed parts were routinely misbehaving. My level of sensation stops at T8 (thoracic 8) of the spinal cord. From my waist down, I feel nothing, control nothing, and rely on crazy signals from those body parts to let me know if something is wrong.

Leg spasms can indicate anything from a wrinkled sock pressing into my ankle, to an overfull bladder, to an infection, or even an unseen injury.

My body speaks in a language of its own; I have to listen to it if I want to stay healthy.

This last cry for help has been a doozy. My legs began sweating and would not stop. A urinary tract infection was suspected and treated, but the sweating persisted.

Soon it began to affect my ability to transfer safely out of my wheelchair. Since I can’t stand, I must use my arms to lift my body up and over from one surface to another. My moist clothing began to snag and stick in the process.

More than once, I almost got stuck between the two surfaces.

Fear began to color my thinking.

What is wrong with me? Why can’t the doctors figure it out? Why won’t it stop? What if it never stops? Is it another adjustment I have to make to life with paralysis? Is it one more thing I have to accept?

Not yet, I decided.

So I reeled in those thoughts, said a quick prayer, and challenged my muddled brain to try to figure it out. I found a blank calendar and marked every doctor appointment, test result, medication change, and then added my journal notes about my body’s responses.

I discovered the sweating began when I discontinued one medication and started another. Ever hopeful, I posed that theory to three of my specialists.

I got three different answers.

One said that the discontinued medication reduced sweating, implying I’ve always had this sweating issue and this medication suppressed it.

Another said it could be a side effect of the new medication and its interaction with the adrenergic receptor that affects thermogenesis or heat conduction.

Then another said it was a “rare but known” rebound side effect, a withdrawal of sorts, when the medication is stopped abruptly (even though I specifically asked about that possibility when he suggested discontinuing it!).

Ugh. I must admit when I read that last message from this doc, one who has been treating me for years, I wanted to fire back, “I’m a rare bird, dude! Don’t you know that by now?”

But I didn’t. Maybe I should just send him a book.

Anyway, I took the three opinions and reviewed them with my new primary care physician, hopeful that a fresh perspective could help. I watched his deep brown eyes divert from me to the computer screen that was between us.

After a few minutes of clicking and clarifying my calendar dates and symptoms, he moved from behind the computer and said simply, “Discontinue your current medication and go back on the old medication. We will taper you off of it this time. Message me and let me know how you’re doing.”

I’m sure they heard my sigh of relief in the waiting room. Finally I had a plan and a quarterback. Sometimes that’s all this gal needs.

After two doses, the sweating stopped.

So did my fears. For the moment.

But isn’t that what our daily transactional life is all about? Questioning the reality of our fears? Addressing our concerns by paying attention to our symptoms? Finding the right people to help us create a plan so we can get through it?

Sometimes surviving life’s detours is more about persistence and endurance than acceptance, I’m learning.

At least until the reality becomes clear.

In the meantime, on we go. Thanks again for your thoughts and prayers in this long recovery process. Keep ‘em coming!

My best – always,

Becky  (Nana B)

P.S. We made it! Thanks Peter and Meredith for celebrating with me at the Pathfinders for Autism Zoo Run last weekend. We sold out with 1500 runners and walkers! There’s still time to contribute to our team that honors Madison with this LINK.

Celebrating at the Pathfinders for Autism Zoo Run


  1. Sue Laplant says

    I loved this- “questioning the reality of our fears.”
    It’s so true that we must advocate for ourselves in this life. Loved your book and this piece.
    Glad you are doing bettet

  2. So hard to read the signs a body sends. I feel grateful you put it into words.