I woke up this morning and had to talk myself out of bed. I prepared my laundry for pickup, but then needed to lie down to catch my breath. On some days, the mere act of sitting up has been a challenge. I remember moments of being a fitness competitor.
If you had the chance to sit down with yourself just after your diagnosis, what would you want to say? If you only had an hour, what wisdom would you impart? Would you warn of the grief and hardship ahead? Would you right the mistakes in your journey? Would…
I woke up this morning with a lot of things that needed to be done. By 2 p.m., only one thing had been checked off the list and I was sound asleep. The old me — the one before lupus came into my life — would never have stopped…
When the doctor called and gave me the news of my diagnosis, I honestly felt that with a few meds, I’d be OK. As I look back on it now, I realize how ludicrous that idea is. I’ve always been independent and made my own way, and I was determined…
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.