Columns

Parenting With Chronic Illness Is Hard — So I Lie

“Hey, Mom, can you play with me?” my son, with his boundless energy, asks me enthusiastically, his eyes brimming with excitement. My heart is whole, and for today, I am still his favorite play buddy. Anyone with a chronic, debilitating illness will understand the following few words. “Sure, honey,…

Finding the Right Doctor Can Make All the Difference

The alarm on my phone starts its disruptive routine early, and the repetitive noise annoys me out of my slumber. While the rest of the world remains cuddled up for a few more hours of sleep, my husband and I drag ourselves out of bed at 3 a.m. to catch a two-hour…

Anxiety Over Public Restrooms Is Real

I take immunosuppressants to stop my body from fighting itself and reduce the symptoms of scleroderma. But that also prevents my body from defending against bacteria and viruses. This makes me think of everything in a new way. After the first few months of taking immunosuppressants, I learned that…

Disease Progression Stings, but It Won’t Defeat Me

“It’s time to start a more aggressive scleroderma treatment,” my local rheumatologist says, although I’m not prepared to hear it. She thinks we are losing the battle and need to fight back harder. But just like in the movies when the main character is given bad news, her words…

I’m Laughing at My Salt-and-Pepper Skin

Back in the late 1980s, I was listening to the iconic female hip-hop group Salt-N-Pepa as I entered my teenage years. Today, their words would be considered mild, but back then, tunes like “Push It” and “Let’s Talk About Sex” were a hot topic in the tabloids. Like most…

Are Diamonds Really a Girl’s Best Friend?

She wasn’t my first. That bit of history belonged to Victor. Obsessed at the time with the suave and masterful Victor Newman character from the soap opera “The Young and the Restless,” I cuddled the floppy ball of fur that shared his name. Although he didn’t have any similar traits…

Scleroderma Can Be Overwhelming, but It Doesn’t Define Me

It was a particularly beautiful morning. The hot Florida sun was still low in the sky, and a light breeze kept us comfortable while we watched our youngest daughter play soccer. It was almost perfect. As usual, I was rudely reminded that my broken body needs constant attention. My bladder…