First in a two-part series. In 2014, I took a road trip to Montana to receive experimental treatments in the underground radon mines. (Photos by Andrea Wyckoff) Visiting the “radon resorts” of Montana was actually one of the best solo vacations I…
On Saturday, Nov. 2, 2019, I was informally diagnosed with ankylosing spondylitis. I had already unknowingly suffered the symptoms of AS for years. Realizing I was suffering from an incurable disease stopped me dead in my tracks. I felt a strong compulsion to immediately try to stop whatever was…
I showed up at my doctor’s office with stickers all over my back. The pain usually was most severe in the middle of the night. Yet, I was always surprised by how difficult it was to recall my nighttime pain in…
I am honored to be joining the team here at Ankylosing Spondylitis News. I have been living with ankylosing spondylitis (AS) for the past 20 years, so I am very familiar with the ups and downs of having a rare disease crash land into your life and snatch control…
At 3:30 a.m., I sat in bed gasping for air with acute pain in my chest. Like every other night, I had gone to bed at 10 p.m. after completing my usual routine, which started a few hours before bedtime. My goal was always to get as many…
Have you ever watched the movie “Finding Nemo?” If you have, you might recall the scene in which Dory, the optimistic, forgetful, and friendly fish, tells her newfound fish friend Marlin, a clownfish who just lost his only son, Nemo, to “just keep swimming.” Dory’s simple three-word phrase reminds…
Some people just don’t “get” chronic illness, and they can be pretty cruel about it — or thoughtless, at the very least. It’s hard when people don’t understand what it’s like for those with ankylosing spondylitis (AS) to live with daily pain and the pressures of financing medication,…
After my diagnosis of ankylosing spondylitis (AS) in 2017, my doctor told me to quit drinking and smoking and to start a decent exercise routine. Then, he basically said, “Go on Humira, and good luck.” I was just a number, in and out of his office. People in Facebook…
I’ve noticed lately that public health crises, such as the new coronavirus pandemic, make many people anxious. This is especially true for the immunocompromised, disabled, and chronically ill. Of course, there’s a difference between health anxiety and health concern. Anxiety is obsessive. It’s irrational and toxic. Concern, on the…
Look, I get it. You can’t blame people for being curious. It’s hard not to be when someone lives with an incurable — and mostly invisible — disease. I’m not hunched over, and I don’t typically have swollen red eyes, so to other people, I look “normal.” In this…
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