As I type this, I have 13 tabs open in my browser. I’ve been working on advocacy campaigns for the Arthritis Foundation and the RareAction Network, preparing for Rare Disease Week meetings with my members of Congress, reading other perspectives on Rare Disease Day, checking three different email addresses,…
“Optimist: Someone who figures that taking a step backward after taking a step forward is not a disaster, it’s a cha-cha.” — Robert Brault This is exactly what sarcoidosis is like. It’s like we’re living in the song “Cha-Cha Slide.” Having sarcoidosis is a never-ending dance of symptoms, doctors,…
We’re all familiar with the evolutionary fight-or-flight response. When faced with stress or danger, we go through physiological changes that enable us to either battle a predator (fight) or escape the situation (flight). However, there is another option, although we probably wouldn’t choose it willingly: to freeze. That’s…
Happy New Year! By now, we’ve all hopefully recovered from the holidays and are starting to get into the groove of 2022, hoping and planning for a better year. The recovery may be a little easier this year, as celebrations have looked different since COVID-19 took over the world. We’ve…
I’ve been reading through my recent columns, and I noticed that I frequently mention how tremendously helpful therapy is. There are a few reasons for that. When I started my blog in 2010, my goal was to help people. I thought that sharing how I got through difficult times…
I’ve never been very good with boundaries. I’ll respect yours, sure. But when it comes to setting my own and sticking to them, not so much. Over the years, this has taken its toll on relationships, employment, and even my health. Kerry at Disney World with her mobility…
Thanksgiving has always been one of my favorite holidays. It’s not about material things, or one religion over another, or one-upping anyone with decorations or extravagant gifts. It’s simply a day of gratitude. A day for friends, family, football, and of course,…
Yesterday, I made vegetable curry for dinner, and it was a big deal. Well, it was for me. I’ve never been much of a cook. When I was 15, I “wooed” my husband by burning a frozen pizza, so he knew what he was getting into when he chose to…
The sarcoidosis community took a serious hit when we learned of fellow warrior Rodney Reese’s passing on Sept. 25. A beloved husband, father, and grandfather, Rodney was also a friend, brother, and father figure to thousands of people living with sarcoidosis. We have lost a cherished member of our family.
Back when I was healthy, I’d work up to three jobs at a time and volunteer on top of that. My husband’s work schedule was based on seniority, and because he was relatively new to his job, he usually had crummy hours and even crummier days off. He was coming…
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