“Get out of bed … now!” Are you kidding me? Getting out of bed would take forever. “Time waits for no one. Embrace the suck, Amy.” Stop yelling at me! I’m getting there. (And by getting there, I mean lying there not moving, with hot, silent tears rolling down my…
Can you recall a time when you smiled so much that your cheeks became sore? Perhaps it was a day of joy and celebration — one you’ll happily remember forever. Or maybe you have a chronic illness and wear a smile all day to avoid ruining the party for everyone…
The pounding of my heart echoes clearly in my ears. I can see the thumps through the skin on my chest. It’s erratic, beating slowly and calmly one minute, and out of control the next. It’s like a toddler is in my chest playing a new set of drums —…
The first National Scleroderma Conference I went to was in Anaheim, California, in 2014. Not only was it one of the best organized major conferences I had ever attended — the number of workshops and amount of information was dazzling — but also it was great to meet so many…
People often ask me how I continue to battle scleroderma. My answer mirrors that of many others fighting awful diseases: I have no other choice. I may not have chosen to live with scleroderma, but my husband, Ross, does every single day. In the beginning, we fell in love hard…
The bell echoes loudly, signaling the fight’s start. The energy and stakes are high. Gloves on, two boxers face off with intense determination. Only one will be crowned champion. Living with scleroderma is uncomfortably similar to being a heavyweight boxer. Every day is spent tirelessly preparing for the next…
They’re the elusive red diamonds in a sea of white. Rare upon rare, males with scleroderma make up 20% of scleroderma individuals. Their disease can also manifest uniquely among the community: Males frequently have more muscular and pulmonary involvement — significant pulmonary fibrosis and impaired lung function…
“Look, Mom!” My teenage daughter bounds excitedly into the room to show me her phone. The screen displays a message adorned with fancy scrollwork designs. She reads the words “June is Scleroderma Awareness Month!” Her smile radiates happiness. I know I should be elated that awareness is being spread…
The clock ticked loudly as the phones rang in unison with a ticking timepiece that was getting on my nerves. I wondered how long my appointment would take. Sitting in the doctor’s office had become second nature to me. Yet, I was ready to be done with…
If I were a vegetable, I’d belong in a 5-pound sack of couch potatoes. When I began my career in China in the 1980s, there were no movies, magazines, TV, or shopping. Working out was the only form of entertainment. I once went to the gym and met my future…
Get regular updates to your inbox.