At the start of a virtual meeting the other day, the facilitator began the discussion by asking all of us, “What are you grateful for?” Answers varied, but most included family, community, and health. I agree with those first two, but I have a harder time saying “thank you” to…
Columns
Since the deaths of Dolly Parton and Tim Curry last week, social media has been flooded with moving tributes. “Jolene,” “9 to 5,” and “The Rocky Horror Picture Show” soundtrack stay with us for their cultural and emotional impact. Due to the music, lyrics, and nostalgia, classics like these endure…
When life gives you lemons, you make lemonade, or so they say. That metaphor doesn’t work quite as well for me, though, because I don’t like lemonade. Still, I agree with the sentiment and try to make the best of things whenever I can. But sometimes you just can’t stomach…
The other day, I read a column from a colleague about how coffee can have a positive effect on liver disease. It caught my attention immediately, as I was actually drinking a cup and waiting on a call from my hepatologist to discuss the results of my recent biopsy.
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…
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…
Recent Posts
- Large study ties sarcoidosis to risk of permanent liver scarring
- Reflecting with gratitude on what sarcoidosis has brought to my life
- Lingering heart inflammation tied to cardiac sarcoidosis relapse risk
- Study identifies three genes that may influence sarcoidosis risk
- How music can help us process chronic pain, and even provide some relief
- Philadelphia summit to bring together sarcoidosis patients, experts
- Immune changes may help reveal disease activity in cardiac sarcoidosis
- In an inaccessible world, sometimes you can’t make lemonade
- Study finds sarcoidosis may follow 2 distinct paths after diagnosis
- Global trial now underway to test oral therapy for sarcoidosis in the skin