A Glimpse at Real Caring

A Glimpse at Real Caring

If you read my last post, you know I am beginning a slow taper off my seventeen years of prednisone (you can read how I came to be on prednisone for so long HERE). At this point, I’ve delayed beginning the taper until March 3r. Why? I had oral surgery yesterday— thanks, Sjogren’s for the dental fun— and decided not to further upset the apple cart that is my body with reduced prednisone. Yes, its balance is often that precarious, just as it often is with people living with autoimmune and/or neurological condition.

Were my medications this simple.
Photo by Laurynas Mereckas on Unsplash

So when do I begin my taper? March 3rd, meaning I’ve only delayed things one week. But, just so you know, I’ve also altered how I’ll be doing the initial stage of my taper. After doing a lot of reading and research on prednisone tapering, I’ve come to understand that there are two primary ways of tapering: percentages and alternating days. By last week’s infographic, I’m doing the alternating days, kinda sort. Well, scratch that. We’re, meaning my spouse and I, are seeing that I do a flat-out alternating day method 9/8.5 rotation minus the 9 for both Saturday and Sunday for the first month alongside a consult with my primary care before I go further. Why? Potential withdrawal and adrenal insufficiency, neither of which are pretty and are potentially dangerous if not deadly.

Above you’ll see my new, should be safer schedule. I’ll let you know what my primary has to say on the matter.

She actually took a moment to care. This brought tears to my eyes.

But on to my glimpse at real caring. My primary care nurse practitioner, hereon dubbed my PCNP, took it upon herself to call my rheumatologist to verify that they’re prescribing my prednisone, which they are not, then she, meaning her nurse, called me to see if anyone else was doing the prescribing. Nope. No one is. Let this sink in. My PCNP was proactive in verifying that no one else has taken over my prednisone throughout this mess. She actually took a moment to care. This actually brought tears to my eyes. It truly did.

In the past months I have been admonished and yelled at for being prescribed long term prednisone, (some 17 years now) but my PCNP, the newest among my medical caregivers, is the first who actually took a moment to make certain I was medically safe with this medication, that I had what I needed, the first this year who didn’t pawn me off on someone else or dismiss me without securing my care.

But I digress. My prednisone rotation beginning March 3rd will be 9/8.5 repeat for at least one month followed by a month of solid 8.5 unless my PCNP tells me otherwise.

I’ll keep you updated on my taper and begin delving into past medical happenings that have led to my current jaded state next week.