Taper Town: A Daily Practice
It is early morning. The house is still. I stand in front of the French doors and view the backyard as I begin to move. Wrists. Ankles. Neck. I sway back and forth, freeing my arms and legs from… Read More
Taper Town: Stuck Street
I’m stranded in Taper Town, stalled between well-enough-to-be-bothered-by-my-growing-to-do-list and in-too-much-pain-to-attack-it. The street sign reads: Up ahead, there’s an emergency box: Break glass for prednisone.
Taper Town: The Blame Game
A tombstone bearing the epithet, “I told you I was sick,” was one of my grandfather’s favorite jokes. But this lament is no joke for people with autoimmune diseases. Our lives are often riddled with odd symptoms and… Read More
Taper Town: Take Two
At my last doctor’s appointment, my rheumatologist encouraged me to taper my 5mg/daily dose of prednisone… when I was ready. “See if you can taper down to 4mg by the next time I see you,” she said. “I… Read More
Taper Town: Don’t Know What You’ve Lost ‘Til It’s Back
I wake up curled around the pain. Burning, it thrusts me from deep sleep into semi-consciousness, and I lie there panting, knees to abdomen, elbows to chest, face to fists. There is only pain. I become aware of… Read More
Taper Town: Initial Skirmish
Well, good. Who wants to read about an easy prednisone taper, anyway? Hi, joint pain, muscle aches and stiffness. Remember that jet tub we had installed? That’s for you. It soothes peripheral neuropathy and the purple-white-red ache-numb-sting of… Read More
Taper Town: Unpacking
As a nearly two-week resident of Taper Town, I feel confident saying that the move has been uneventful. And in any prednisone taper, uneventful equals successful. Specifically, I decreased my prednisone dosage from 5mg every day (5, 5,… Read More
Taper Town: Move Day
Today’s the day: I’m moving to Taper Town. Did you ever see a two-year-old go limp when his mom or dad tries to lead him by the hand? Neat trick. That’s what your adrenal glands, those lovely lumps… Read More
Operation Adrenal Awakening: The Plan
18 September 2013, 09:00 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,… Read More
A Call to Arms: Advance Notice to My Adrenal Glands
Standing tall in fatigues and combat boots, my hair waving somehow gracefully in the wind as helicopter blades beat the air around me, I raise my megaphone: Listen up, adrenal glands. I’m headed to NY to see my… Read More
Day 3 post-failed-#prednisone-taper:
Sometimes #lupus wins. #youdontlooksick Okay, fine. It’s not that my shoes all suddenly need to be broken in more. My feet are swollen. And fine, the needle on the scale continues to dip. And that pain in my… Read More
Day 29 of slowest #prednisone taper ever:
A note from my body: WHERE’S MY PREDNISONE? GIVE ME MY PREDNISONE.” #lupus #youdontlooksick
4/30 Day 28 of slowest #prednisone taper ever:
Suddenly, a 1mg decrease doesn’t feel like progress. #lupus #youdontlooksick #impatient Of course, it is. It’s 20% less than I was taking a month ago. On days like these, I need to remind myself to look at the bigger picture…. Read More
Day 22 of slowest #prednisone taper ever:
At this rate, I won’t be off prednisone until August. #notacompetition #lupus #youdontlooksick
Day 21 of slowest #prednisone taper ever:
3 weeks! Down 20% from 5mg to 4mg. Get thee behind me, Satan! #lupus #youdontlooksick Perhaps you’re wondering why I’m being so public about trying to get off prednisone. What’s the big deal, anyway? It’s only 5mg a day…. Read More
Day 20 of slowest #prednisone taper ever:
Moments of clarity are the foil to my usual loopis stoopid. Hello, me. #youdontlooksick #lupus Not sure what a foil is? It’s literary term time: FOIL: A character that serves by contrast to highlight or emphasize opposing traits in… Read More
Day 18 of slowest #prednisone taper ever:
I want to say “more good days strung together” but I’m afraid to jinx it. #youdontlooksick #lupus
4/17: Day 14 of the slowest #prednisone taper ever
Good day yesterday. Hitting the 2 week mark w/hope. 0.5 mg down, 4.5 to go. #youdontlooksick.
4/16: Day 13 of slowest #prednisone taper ever
Who cares? Have you seen the news lately? #youdontlooksick
4/13: Day 10 of slowest #prednisone taper ever
I’m running out of non-taper excuses. Maybe stress about taper itself? Reaching. #youdontlooksick
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