As we approach Rare Disease Day on Feb. 28, I reflect on the pros and cons of the word “rare.” Apart from my chronic illness, I love being unique. There’s something wonderful about having an uncommon skill or piece of knowledge. It’s partly the whimsy…
It’s funny what we take for granted — including the sound of our voices. For a few years, I took voice lessons and participated in community theater, often auditioning and making it with my singing voice. No, it was not Broadway, but it was fun and I truly enjoyed it.
Historic and challenging events happened last year. There was never a dull moment, and if your coping skills were rusty, 2020 made you get out the polish. I was admitted to the hospital just after the year started and was in a medical facility until…
When my body started failing, I hopped on social media and asked if anyone had dealt with similar issues. As the mystery built, I coped by using comedy and positivity, as I often do. When the weight of…
Lupus stinks. I doubt I will ever change my mind about that. However, not everything about it stinks. I am learning to embrace things it has afforded me that I’d hoped for when I was a younger woman. I grew up poor, and when I think of the…
In my past life, I might have been a little vain. Never in an obnoxious way, but I was very secure in my looks and abilities. I have been told all my life that I am pretty, but I always say thank you, and I am gracious, as…
Learning to live with lupus fatigue for nearly five years has been one of my greatest challenges, both physically and mentally. Initially, it was like someone flipped a switch in the middle of the night. I woke up the next day and realized sleep hadn’t rejuvenated me or…
Every morning and evening, I pull out my big bag of medications. The evenings aren’t as bad as the mornings. For the second round of the day, I take fewer meds, and I’ve had the entire day to accept that I must take them if I expect to help…
A month ago, I quit my job as a barista in search of something different. I applied for nearly everything with only one qualifier: I didn’t want another job in the hospitality industry. I’m a big believer that you will never have to fight for what is “right” for you.
I’ve always considered myself a reliable person. If I said I would do something, it would be done. If I said I would be somewhere, I’d likely be the first one to arrive. Punctuality is a sign of reliability. But over the years, lupus has given me a new phrase…