Suleika Jaouad Understands Life with Lupus
People take cancer seriously. It’s a known entity. They know it is scary and can kill you and that it requires serious and on-going medical care. They have a general knowledge of symptoms and treatments and side effects… Read More
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
When Even Yoga Hurts: Tai Chi
NOTE: Scroll down for a practical guide to starting tai chi. I could say she was a terrible doctor, but that isn’t true. I could say that she doesn’t care about treating the whole patient , but I… 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
When Yoga Calls: Gentle Poses for Every (Dis)Ability Level
Yoga’s calling me today. Non-yogis tend to see yoga as a soft exercise. A boring combination of stretching and breathing. You know – not a work out. And it can be among the gentler types of exercise. Yogic… Read More
Photosensitivity: It’s Not Just About Sunburn
I remember the first time sunlight landed me in the doctor’s office. We were down the shore, in Wildwood Crest, NJ, and I’d spent a lovely morning on the beach. After a long school year, a dip in… 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
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