Sunday, March 23, 2014

Recipes

Later, when I was living on my own in New York, I shuttled back and forth between all kinds of doctors.

They said, "You have bursitis here, and tendonitis here."

They would shoot me up with cortisone and look at me like I was crazy. One rheumatologist even told me I was making it up.

When did you finally get some kind of diagnosis?
In 1997, for lupus. I had a pinkish-red rash across my nose [a "butterfly" rash across the face is a symptom of the autoimmune disease ^[1].]

I had elevated ANA [antinuclear antibodies in the blood, also a symptom of lupus]. So, with that, plus the soreness in my body and joint pain, they said, "You have lupus." They put me on antimalarial medicine [a common lupus treatment]. I was treated until 2002, when I finally challenged that diagnosis.

Turns out, it wasn't a lupus butterfly rash at all, just rosacea ^[2].

When did you suspect it might be fibromyalgia pain instead?
My husband, Christopher, and I were living in Northern California in the early 2000s and we'd just started doing yoga.

I'd get flare-ups once every 4-6 weeks so strong that I couldn't do [the poses].

My yoga teacher gave me some articles about fibromyalgia. I thought, This is it! This describes exactly what I've been feeling for the last 15 years.

Nothing had been a match [to my symptoms] until then – joint pain without inflammation, migraines, depression. All of this stuff was just dead-on, a 100% match.