Columns

I winced as I stepped down onto a stair with my left foot. A swirl of dull, aching pain was joined by the feeling of skin tearing and puffiness. It felt like my ankle had an inflated life preserver wrapped tightly around it, cutting off more of my circulation with…

Long, voluminous, deep brown wigs; charcoal eyeliner; fluffy eyelashes and lash glue; sparkly rich tones of russet and copper eyeshadow; shaped and ombre drawn eyebrows; blood red lipstick coated in shiny gloss; perfectly manicured, gold glitter acrylic overlay on my nails; and beautiful, flirty sundresses: I use them all to…

I nervously tapped my foot while waiting in the examination room to meet my new nephrologist. I could hear him talking in the next room, so I knew he was finishing up there. When he walked in, he extended his hand and introduced himself. But he stumbled on his words…

I grimaced, pulling my arm back in reaction to the pain surging through my forearm. I’d bumped a large purple bruise when I lifted a box. Rubbing my hand over the bruise, I wondered, Where did that come from? Come to think of it, I had several new large and…

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…