When my fiancé, Michael, first asked me out, he never expected to one day be my caregiver. In honor of Valentine’s Day, I dedicate this column to him. Michael is a rock, a support beam holding me up, keeping me steady despite anything acute hepatic porphyria throws my way.
Columns
I love coffee, but it doesn’t play well with my acute hepatic porphyria (AHP). Caffeine stimulates the central nervous system, and in recent years I’ve grown more sensitive to its effects. My AHP already causes me anxiety, irregular blood pressure, and insomnia, and as much as I may…
My undiagnosed rare disease sabotaged friendships. For years, I kept my acute hepatic porphyria (AHP) hidden for fear of being viewed as weak or seeking pity. As a result, I showed up in the world as guarded and aloof, shy and uninterested — traits that do not align well…
I would rather put on a strong face than admit to anyone the sheer amount of pain I’m enduring. I’m less focused on describing the actual pain at doctors’ appointments. Instead, I distractedly worry about whether I will be believed. I’ll reason with myself, thinking I can deal with these…
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…
Recent Posts
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- Sun-safe camp builds confidence in young patients with rare porphyrias
- Porphyria Palooza was an educational and uplifting family reunion
- Experimental EPP therapy increases pain-free time in light in trial
- I wouldn’t survive a zombie apocalypse as someone with chronic illness
- Prolonged AIP treatment helps woman recover after severe attack
- Preventive treatment cut attack risk in small acute porphyria trial
- How a random book led to a porphyria diagnosis that saved my sister’s life
- Seasonal bias may alter how EPP patients recall their symptoms