I was already emotional before I checked in at the nurse’s station. More than a week into a severe acute porphyria attack, I needed urgent hospital intervention. My body was weak and my mind was disoriented. Luckily, the direct admission orders from my hematologist allowed me to bypass the…
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I tugged at my biking shorts and unlatched my helmet. My person and I locked up our bicycles outside a trailside brewery and went inside for a drink. Thanks to RAGBRAI, a hugely popular bicycle ride across the state of Iowa, a serious biking and bars culture has taken…
At some point, it happens to anyone who opens up about a disability or ailment: Someone will spout a wonder cure. Ableist microaggressions are pervasive in a society of quick fixes and pain phobia. I see it everywhere: Minimize your pain with this new supplement or eliminate it altogether with…
I met my new primary care physician (PCP) on a frigid winter morning. I sat in the waiting room clutching my partner’s hand, a file folder spread open on my lap like a security blanket. My history of toxic relationships with specialists had left me exhausted, terrified, traumatized. I…
I refreshed the Lyft app on my phone as the speakers behind me blared music from the beloved animated classics of my childhood. I eased my body onto a relatively dry strip of concrete and continued my day of waiting. That morning in February 2020 started earlier than my body…
I bore down on the pedals as the pavement rose to meet me. Ahead, the tree-lined trail continued at a slow incline, swelling gradually as I glided uphill. With the push of a button, my pedaling took me farther. With the flip of a switch, I could be carried up…
I stacked a cling-wrapped tray of broccoli trees on top of half a dozen brats, then shoved them to the side of the middle shelf, revealing two blocks of tofu, a slightly wilting head of cabbage, and a storage container holding segments of an onion. Returning from the grocery store,…
Waiting in the center aisle of the plane wearing a brown backpack and a blue surgical mask, I felt the eyes of strangers on me. It was February 2020, and my family was boarding an early morning flight to Orlando, on our way to Disney World for a little winter…
Kicking off my shoes, I turned my chin up to the top of the hill, where the grassy crest met the garden and the sky beyond. I looked to my right, where one of my dearest friends Jennifer had mimicked my actions and slipped out of flip-flops. Amid the blowing…
Deep in the dark recesses of my bottom filing cabinet drawer is a collection of hard-bound, brightly colored planners from years past. Each agenda represents a year in my life — 365 days of to-do lists, Little League games, project deadlines, doctors’ appointments, birthdays, book clubs, coffee dates, meetings, and…
Recent Posts
- Finding a balance when you’re both the patient and the caregiver
- 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