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All The Little Victories

November 29, 2021

There was a time when I was really sick, too sick to touch my feet, and I wished I had a device for putting on socks (affiliate link). Until recently, I didn’t even know that such a thing existed. It would have made my life easier and, well, warmer. (If you have a chronic illness […]

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October Slide Part 2

October 27, 2021

Several years ago I wrote a blog post about the October Slide. At the time I didn’t know much about it and was sort of educating myself as much as I was trying to start a discussion and raise awareness. Not much has changed since then. I still wonder about this weird phenomenon where people […]

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I Went For a Drive

September 20, 2021

Until recently, I hadn’t been in a car for at least five years. The last time, I was so severely sick that a crew of paramedics had to put me on a gurney and wheel me into the back of an ambulance under the cover of darkness because I was so sensitive to light. Then […]

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Up In Smoke

August 23, 2021

The last time I went outside, I wasn’t sure if I could get back in. Wild fire safety was at the front of my mind as the smoke in the air was 500 on the AQI meter (literally the highest it goes). It burned my lungs and throat. I was dizzy and disoriented, weak and […]

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Back to Normal (But Not Really)

July 29, 2021

Things are getting back to normal. But not really. A stadium filled with fans. A restaurant packed with people. A store swarmed by shoppers. Until recently, these things were mostly nonexistent during the pandemic. But now that people are getting vaccinated, places are opening up and people are venturing out in public again. Except not […]

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My First Shower in Six Years

June 29, 2021

When I became bedridden six years ago, bathing in bed was among the many challenges I faced. I didn’t have the option of using a shower chair with arms or even a shower chair with wheels (though now I love these things). Getting (and staying) clean when you can’t get out of bed is incredibly […]

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When a Relationship Goes Viral

May 31, 2021

The last time I saw Shannon, she couldn’t hear my voice. We had recently started what some might call “chronic illness dating.” My case of myalgic encephalomyelitis — a multisystem, post-viral illness that Dr. Anthony Fauci has compared to “long haul” COVID-19 — made it impossible for me to speak audibly as I struggled to […]

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I Wrote 90,000 Words on my Smartphone. And I Wasn’t Texting.

April 29, 2021

I wrote a book on my smartphone. It took me the better part of a decade, but I was able to type out all 90000 words of my memoir, When Force Meets Fate, on a tiny 4.7 inch iPhone screen. Doing 90000 of anything is a lot, but writing 90000 in words on such a […]

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I Just Walked For The First Time in Five Years

March 25, 2021

Tears are gushing out of my eyes, down my cheeks, dampening my shirt. These tears are a mix of joy and sadness. Joy for having just walked for the first time in half a decade. Sadness for having had to live through those five years. I’ve been sick since 2010, but a few years into […]

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Chronic Illness Burnout is Real

February 27, 2021

If you’re at all like me, then you’ve probably wondered if chronic illness burnout is a thing. Well, I’m here to tell you that it absolutely is a thing. The fact that you are even wondering about it means it is indeed a thing. Chronic Illness Burnout vs Medical Burnout Some people call it chronic […]

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