Sometimes when people learn that I have lupus, they tell me about someone they know who was cured by taking a “magic potion.” Multilevel marketing companies are the worst — whatever disease you happen to have, their product will cure it. We’ve all heard an anecdote about…
I pride myself on being a strong person. Over the years, however, my definition of strength has changed dramatically. When I was growing up in Chicago’s inner city, being strong meant never outwardly showing any fear. I’d fight for the smallest victories to let people know I was not to…
I don’t trust doctors easily. The team of specialists at my nephrology unit who have overseen my treatment for the past three years are the only medical professionals I have absolute faith in. I have confidence in them because when I attend an appointment to discuss my illness, test…
I’m going to see a new doctor in a few days. This time, it’s for my eyes. I wasn’t born with good eyes, and it’s just gotten worse over the years. I got my first pair of glasses when I was 10 years old. As a teenager, my vision started…
I think that whenever someone gets a life-changing medical diagnosis, their attitude is, “I’m going to beat it.” I could be wrong, but all the movies I’ve watched back me up (because movies are real), and this was the attitude I had. I felt sincere optimism that the medications would…
It doesn’t matter how little I work or how much I might sleep, there is no way for my body to catch up with my fatigue. Sleeping for three hours or 14 hours makes no difference. I still wake up feeling as if I’m starting the day on the back foot.
My insurance company changed my Benlysta (belimumab) prescription to a new pharmacy this week. So, I had to answer all of their new patient questions. First, we worked through the important stuff such as my name, address, and how I wanted to settle my copayment. For those…
Learning a new skill is not easy. But you have an incentive to practice if it’s something you enjoy or find to be beneficial. I’m working on coping with my depression. I’ve discovered that if I want to be mentally well, I must learn how to handle this new lupus…
I love my body. It’s far from perfect — in fact, it’s imperfect in more ways than I can bring myself to count. But it’s beautiful and it’s mine. It has taken me a long time to get where I am today. There have been plenty of times since my…
I am not a natural-born exerciser. No one in my family is athletic. There were no evening walks and no one played sports. We didn’t run unless we were being chased. When I was first diagnosed with lupus, my rheumatologist told me I needed to walk half an hour…