The COVID-19 pandemic canceled a wedding we had scheduled for last June. When my fiancé, Michael, and I told friends and family abut our decision to postpone the ceremony, we were met with tons of sympathy. The sentiment was incredibly thoughtful, almost over the top. The thing was, I didn’t…
One Thousand Flaming Swords — Claire Richmond
Claire Richmond was diagnosed with acute intermittent porphyria in 2017 after living with unexplained pain for 19 years. She was 32 years old and quickly learned there’s no guidebook for incorporating a strange rare disease into her life. When she could no longer work full time, she struggled to find her purpose. That’s when she began to write. Claire hopes speaking her truth will build connections and generate hope. She lives in Des Moines, Iowa, with her family and rescue poodle.
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When my acute hepatic porphyria (AHP) diagnosis was still fresh, my missing enzyme was to blame for everything going wrong. I didn’t yet know the timeline of my treatments, or how symptoms would ultimately impact my plans. My heart was an anvil, an impossibly heavy chunk…
It was love at first sight when I met my standard poodle, Lenny Bruce, but what I never imagined is how much he’d teach me about love and living. At the onset of the COVID-19 pandemic, I began playing an online matchmaking game with dog rescue sites. My family had…
My fiancé, Michael, is my caregiver. He tends to my needs during acute hepatic porphyria attacks, provides emotional support, and has steady energy that keeps me sane. Last year when he became very ill, I had to take care of him. It was a “Freaky Friday” situation.
I recently found myself (masked up) at Walmart in a tiny Iowa town. These days, I don’t frequent big-box stores, but I’m a huge fan of scoping out the newest innovations in packaged foods adorning their shelves. Holiday-themed candy is one of my favorite things to discover, and I was…
Like many people with painful chronic illness, I struggle with my mental health. This morning, simply getting out of bed took a lot out of me because I was tired from a restless night. Then, as my wheels got turning, I experienced the onslaught of dread that accompanies any upticks…
I walk my standard poodle, named Lenny Bruce, around the neighborhood every afternoon. We live in a historic area of Des Moines, Iowa, with sturdy sidewalks and old, expansive trees. Over the last week, I have relished the transformation of summer giving way to autumn. There’s an emerging crispness in…
I have a history of abusive relationships with medical providers. My trauma history stems from medical mistreatment and being dismissed while experiencing serious symptoms. My story is not uncommon. Disclaimer: This is not a piece to hate on doctors. I have a history of healthy, productive relationships with medical providers,…
Some will read this column and think it’s too political — that politics isn’t “in my lane” as a writer. I thought deeply about this prior to posting. On a steamy, early July morning last summer, I got behind the wheel of my car next to my childhood best friend…
In accepting chronic pain and the acute intermittent porphyria (AIP) roller coaster, I came to terms with the realities of my new normal. That brings days that must happen and times I get to choose if the burden of my acute hepatic porphyria pain and its corresponding shame…
Editor’s note: This column was updated Sept. 15, 2020, to emphasize the individuality of the writer’s personal experience, and now specifies the importance of seeking guidance from medical professionals. When my second port was implanted on the left side of my chest, just above my heart, I decided to give…
In the early morning hours, my body jarred me awake. Before opening my eyes, I felt the onslaught of symptoms I knew would be coming before I put myself to bed last night. Pain. Not a stomach cramp, not a tummy ache, but bullet holes riddled through my mid-section, smoldering…
Acute intermittent porphyria (AIP) doesn’t define who I am, but it does control what I can do. And my tendency is to talk about that. I will voice my daily struggles, reflect on my hospitalizations, and speak up about the permanent nerve damage caused by nearly two decades of…
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