Claire hopes speaking her truth builds connections and generates hope. At 32, she was diagnosed with acute hepatic porphyria (AHP) after a 19-year search for answers. As severe, unexplained pain became a focal point of life, she exiled her body to protect her mind. Through laughter and challenges, “One Thousand Flaming Swords” navigates daily life with AHP, as Claire rebuilds the bridge between her physical and mental being.
Last month, my primary care physician (PCP) referred me to a cardiologist for suspected postural orthostatic tachycardia syndrome (POTS) after I blacked out (again) on the massage table. According to many testimonies on porphyria message boards, POTS is frequently cited as a comorbidity of acute hepatic porphyria (AHP).
It’s that time of year again, when many of my friends and those on social media are making vision boards and charting paths to achieve their life goals. New Year, new you, right? As a human who is chronically ill and limited by pain, it can all feel overwhelming and…
Like others, I’m guilty of hating on 2020. In relation to in-person gatherings, I’ll be the first to admit I’ve said things like, “After all this is over, …” and, “When we get back to normal, …” But if my acute hepatic porphyria (AHP) has taught me anything, it’s…
Last week, we decorated for the holidays. Mugs of cocoa steamed on the dining room table, and jolly holiday tunes played in our living room as the kids maneuvered around our tree, bestowing treasured ornament-shaped memories onto perky plastic branches. In my hands, I held a rust-colored piece of metal…
As a person with an invisible illness living in an ableist society, my chronic pain and its effects on my body have been minimized, questioned, and altogether denied. Over time, having my pain and associated porphyria symptoms doubted, particularly by medical specialists I trusted, wore away my sense of…
My upcoming holidays are going virtual. Right now, families like mine across the world are making hard calls about how they will spend quality time with their loved ones this season. In the United States, Thanksgiving is unfolding amid the biggest and deadliest COVID-19 spike to date. Certainly, this…
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…
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…
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