Like most girls growing up in the 1980s, I had a massive crush on Michael J. Fox. I watched all of his shows and movies (many times) and hung his picture on my bedroom wall. When he started writing books, I had to read those, too. These days, I admire…
Float Like a Buttahfly – a Column by Kerry Wong
My mom visited me at the hospital during my latest infusion and, unsurprisingly, did not come empty-handed. She brought lunch and a few tchotchkes she’d picked up recently. Among them was a decal that read, “And one day, the girl with the books became the woman writing them.” It made…
I am sick of being sick. Tired of being tired. Sick and tired of being sick and tired. That’s a fairly common sentiment among people living with chronic illness, since “chronic” means it never seems to go away. I’ve been living with sarcoidosis, rheumatoid arthritis, fibromyalgia, and more for…
For the past few days, or weeks — or is it months? — it feels like I’ve been hurting more and more. It’s easy to lose track of time when one day lost to pain blends into the next. It’s difficult for me to explain, so I can only imagine…
When I was diagnosed with sarcoidosis, I immersed myself in the community and made April — which is Sarcoidosis Awareness Month — my busiest time of the year. I dressed, accessorized, and dyed my hair purple, the official color of sarcoidosis awareness. I created walkathons and other awareness events,…
I recently opened a fortune cookie to reveal a message saying, “Your education will empower you to make informed decisions in your professional life.” That may have been true in my career, but it feels even more so now in my life as a professional patient. I don’t remember the…
When I learned that New Edition, Boyz II Men, and Toni Braxton were touring together, I knew my husband and I had to go. We grew up on their music, and songs from 20, 30, even 40 years ago still make my heart sing (they make me sing, too, but…
How do you celebrate an awareness day, week, or month? I know how we celebrate other special days on the calendar. New Year’s Eve? Watch the ball drop and kiss at midnight. Passover? Dinner with the family, and no bread for a week. Birthdays? Celebrate with loved ones, perhaps dinner…
Over the weekend, I went to see the Harlem Globetrotters on their 100 Year Tour. I’d seen them as a child, but since I only started watching basketball a couple of years ago, I’ve gained a new appreciation for their incredible skill. The shots they take, the stunts, the acrobatics…
Last week, I met with a new hepatologist to address concerns about my liver function tests. The week before, I had a follow-up with the neurologist who’s been treating my sarcoidosis-associated small fiber neuropathy for years. At both appointments, my doctors asked permission to use artificial intelligence (AI) to…
Recent Posts
- Foundation launches sarcoidosis research registry across 13 US sites
- Sharing the painful truth can comfort chronic illness patients
- New partnership expands insurance support for people with sarcoidosis
- A sarcoidosis lung transplant brings high hopes for long-term health
- When living with sarcoidosis, it helps to be ‘Simply More’
- Relapse common after pulmonary sarcoidosis treatment changes
- New grant program awards $600K to boost sarcoidosis research
- After unrelenting health setbacks, frankly, I’m sick of being sick
- Malaria drug may help treat eye inflammation in ocular sarcoidosis
- Diabetes drug could be repurposed to treat skin sarcoidosis: Study