Columns

I’ve always liked to think that age is just a number. Being older doesn’t mean you have less value, and being younger doesn’t mean you lack life experience. Our society seems to place more value on youth, but in the rare and chronic disease world, I’ve learned that being young…

When you have a chronic or rare illness, healthcare becomes complicated. Adequate coverage, rising costs, and navigating unclear systems can be just as stressful as suffering with an illness. I recently moved to another state, and even though I began transitioning all of my medical care weeks before my move,…

“So is this normal for you?” My hematologist crossed one arm over his chest and supported his chin with one hand as he gave me a concerned and puzzled look. My blood pressure was 175/146 mmHg, which is considered very high. I sighed. “Yes, my blood pressure has been mostly…

I rub my eyes as sunlight bathes my face. I stretch and sit up, peering out of the floor-to-ceiling windows in our new home and over the balcony. My new view overlooks a lake here in Florida. As I stretch, I assess how my joints, bones, and muscles feel. Minimal…

I squint while looking forward, trying to get my eyes to focus. My head is throbbing so badly I can feel a pulse in my eyes. Every beat of my heart thumps pressure into my eyes, ears, and throat. I also feel it in my chest, feet, fingertips, and eardrums.

Moving is simultaneously one of the most dreaded and exciting events in life. There’s the thrill of new beginnings, but trials and tribulations can also occur, especially during a long-distance move. Having just settled in a new state, I’m now in the thick of the next complication: finding a new…

The winds picked up, blowing ominous clouds into view. The blocked sun and cool winds made the temperature drop more than 10 degrees. We were hours behind schedule. I’d wanted to be on the road at 2 p.m. because rain was expected at 4. My legs and arms were hurting…

“We don’t believe that lupus is causing your medical emergency because you’re experiencing thrombocytopenia as well.” I blinked weakly at the doctor in front of me, puzzled by the news. I’d been admitted to the intensive care unit (ICU) just hours earlier and told I was dying of kidney failure.

When I opened my eyes, all I could focus on was how much they were burning. They were watering, but that provided no relief because my tears were hot. No matter which position I lay in, I was uncomfortable. My skin was crawling and my mind was racing. My thoughts…

Note: This column was updated March 17, 2025, to correct that the writer uses an antibody therapy.  I step out of the shower and face the stranger looking back at me in the mirror. My thin, brittle hair has more gray in it than before, and my scalp is riddled…