It feels like something is missing for me this month. For the past two years, really. Before 2020, my Aprils were full of events, get-togethers, support, and connection with my sarcoidosis family. Now, we’re all in our own homes, saying again how much we miss each other as we get…
Float Like a Buttahfly – a Column by Kerry Wong
For the past few months, I’ve been having a lot of pain around my ribs. I may have dislocated a rib, causing everything in the area to tense up in response (I’ve done that before), or it could be costochondritis (inflammation in the connective tissue around the ribs), which is…
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…
Recent Posts
- Simple blood test may predict cardiac sarcoidosis outcomes
- To scoot or not to scoot: Using a mobility aid with a dynamic disability
- Mobile app for breathing meditation may reduce sarcoidosis fatigue
- New report highlights unmet needs and treatment burdens in sarcoidosis
- Cardiac sarcoidosis symptoms at diagnosis help predict long-term risk
- Methotrexate is safer second-line sarcoidosis treatment than MMF
- A holiday gift guide for your loved one with sarcoidosis
- FSR gathers global leaders to drive progress in sarcoidosis research
- New genetic clues connect sarcoidosis with lung cancer risk
- When patients and caregivers swap roles, empathy usually follows