Columns

Staying in Bed Doesn’t Mean I’m Lazy

I’m a huge fan of mornings. They once stood for solid productivity. Before reporting to the office at 8 a.m., I’d have a three-mile run, meal preparation, personal email, and news headlines all checked off my list. These days I stay in bed, often until 9 or 10 a.m. Still,…

It’s Time to Rewrite the Definition of Porphyria Pain

There is a general lack of understanding and awareness when it comes to pain associated with acute porphyria attacks. Porphyria pain is not well defined in research. It’s misunderstood by doctors and industry professionals, and it’s easy to see why. Pain cannot be objectively measured or seen, and…

How I’ve Rethought New Year’s Resolutions

In recent years, I’ve overhauled my idea of goal setting. A few years ago, I sat down one January to write my New Year’s resolutions in the midst of having acute porphyria attacks and filling out long-term disability applications. My pen hovered, frozen above the page. Uncertainty is stressful.

I Will Listen to My Body This Holiday Season

The holidays are a tricky time for people living with chronic illnesses like acute hepatic porphyria (AHP). My body doesn’t do well with added stress and anxiety. I spent Thanksgiving in an acute attack, and didn’t handle it well. I sat down for meals with both sides of the…

The Effect of the Worker Shortage on My Rare Disease Care

My neighborhood pharmacy was randomly closed last Friday. Given the amount of medications I use to manage symptoms of acute hepatic porphyria (AHP), I’m well versed on the hours that it is open. Imagine my surprise when I arrived at the drive-thru during normal operating hours, and found it shuttered…

My Experience Trying Lupron to Treat AHP Attacks

My rich and complex history with hormones started at age 15, when I turned to various estrogen and progestin combos to control painful periods. I was experiencing acute hepatic porphyria (AHP) symptoms brought on by my monthly cycle, but it took years to get to the real source of…