Columns

Some Days, Exhaustion Overtakes the To-do List

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…

People Offer Help, but I Still Feel Like a Burden

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…

I Don’t Believe Your Product Will ‘Cure’ My Lupus

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…

Being Strong Is Knowing When You Need Help

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…

Could the Medicine I Take for Lupus Affect My Eyes?

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…

How I Keep Holding On to My Optimism

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…

With Lupus, Tired Is a Constant State of Being

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.

Dealing with Questions from a New Specialty Pharmacy

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…

Battling the Loneliness Brought on by Lupus

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…