War Room. I stand in a semi-darkened room, staring down at a large table littered with important documents. Lab reports, clinical research abstracts, and medical records. On my laptop screen, tabs open to Lupus.org, the Mayo Clinic, eMedicine, and Up-to-Date.
I pick up my iPhone, open my calendar, click on October 1st and thumb-type: Operation Adrenal Awakening: Commence.
It’s set, then.
Monday’s visit to the rheumatologist confirmed my suspicion that another attempt at tapering my prednisone dose is imminent.
My previous doctor operated solely in the realm of the cohort, of the scientific study and dealt only with numbered, data-producing bodies. She’d have said: I want you off prednisone by our next visit. She’d have told me when to decrease and by how much. She’d have told me I will have no problems with this. And if I reported any difficulty, she’d have told me I had no choice, no options.
My current doctor operates in the real world and deals with patients–actual people. She gave me no deadline, only a goal: Attempt to taper prednisone dosage until it is zero. She acknowledged the difficulty of this undertaking, and we agreed that any decrease is a positive change. “Experiment,” she said, “And see what works best for you. Go slowly.”
The last time I attempted to taper my prednisone, as chronicled in my Slowest Prednisone Taper Ever posts, I played with weekly half-milligram changes. This time, we’re looking big picture.
My current dose is 5 mg every day.
Starting October 1st, I’m going to take 4 mg every third day: 5, 5, 4, 5, 5, 4.
If, after a couple of weeks, there are no adverse effects, I’ll move to 4 mg every other day: 5, 4, 5, 4.
And if my body starts throwing its expected hissy-fit, I’m going to deal with it like one ought to deal with a child’s temper tantrum. I’m going to remain steady and wait until the fit is over, no matter how long it takes, because my adrenal glands are capable of the task. When they play fair and all is calm again, I will march forward with 5, 4, 5, 4, and eventually 5, 4, 4, and then 4 every day.
There will be no backward movement.
I will admit I’m uneasy about this commitment. The bravado from A Call to Arms: Advanced Notice to My Adrenal Glands has been weakened by a migraine that, in a matter of hours, reminded me just how badly I can hurt. It was the kind of pain that makes the 10 on the pain scale seem laughable. Hurts worst? How about: Makes you curl up in the dark with pillows over your head while you cry and wish only for unconsciousness.
Nevertheless, my plan is set.
Slowly, I’m going to make progress.
And slowly, I’m going to learn that even partial progress is a win.
Gathering papers into piles and closing my laptop, I straighten up my war room, satisfied with my pre-war progress. Fearful but resigned, I slide my iPhone into my back pocket, walk to the door, flip the switch, and step out into the light.
There r no words – but there is hope
I so hope this will work for you! And it’s a relief that you have a more human-centered doctor. (The other sounds like a warden.) Good luck! And thanks for chronicling so difficult a situation.
Yes, Lynette. My current doctor is as human-centered as it gets w/o losing medical integrity! I am lucky to have her, truly.
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