Columns

Why People With Acute Porphyria Should See a Cardiologist

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).

How a Tree Ornament Reminds Me of My Inner Wisdom

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…

Turning Toward Pain and Learning From Adversity

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…

This Holiday Season, Spread Kindness, Not COVID-19

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…

COVID-19 Canceled My Wedding, and That’s OK

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…

Learning Life Lessons From My Dog

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…

Caring for the Caregiver: When Roles Are Reversed

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.