My Story

 

Images of the authorIt was Valentine’s Day 2009. My husband had it all planned – the hotel room, the rose petals and candles. It would be our first Valentine’s Day as a married couple, but there was one thing missing: Me.

After putting up with the shooting pain, heart palpitations and tin-man stiffness most of that day, I conceded and ended up in an ER hospital bed silently cursing my body for choosing Valentine’s Day of all days to give out on me. Still, I thought it would be a matter of getting an antibiotic prescription. Our romantic night could still be saved right? Not so.

With the pink satin Princess eye mask my husband bought covered over my eyes, I lay in the ER bed, next to a belligerent homeless man who was brought in for public drunkenness.
Several tests were performed including EKGs and X-rays and I gave several blood and urine samples. The doctors were alarmed by my high white blood cell count. I was also severely dehydrated and saline was administered to me by an IV. I would have to be admitted – which felt more like being committed to an asylum.

This hospital stay turned out to be the most horrific ever, which included an elderly roommate with a nagging, hacking cough that sounded at 4 a.m. for the next three days I would spend there, lol. Umm, yeah, I even had a mini mental breakdown where I called a friend in hysterics telling her that the incompetent nurses were trying to get a sista committed in the psych ward for real. It wasn’t pretty. Still after all that, the doctors found nothing.

The medication at the hospital had only temporarily numbed the pain and weeks after I was debilitated, causing me to miss days at work. After seeing my primary care doctors and getting poked for more blood, he hinted that I might have an auto-immune disease.

In June 2009, after seeing a neurologist and gastroenterologist, I finally got a rheumatologist appointment.
I prayed against whatever disease was trying to make a home in my body, but I waned in and out of positive thinking. On July 14, 2009, after yet another blood test performed, my rheumatologist diagnosed me with SLE (Systemic Lupus Erythematosus). I thought maybe my prayers weren’t earnest enough – and worse yet, I felt I had not prayed enough so God didn’t take my request seriously. I started researching and I came across a sobering statistic: Lupus is two to three times more prevalent in African-American women, than among Caucasian women.

And many times, the disease is more severe in black women.
I had a need to connect with women like me who were going through it with Lupus. I wanted to learn how they managed every day, what medications were they on, what were their outlets.
I searched and I found a few websites, but they weren’t connected.

So I started lupussistas.com to do something with this disease.
I love God just that much to believe that he trusted me with this and he knew I could make something positive out of it.
I pray that Lupus Sistas serves as the go-to website for black women with Lupus to connect, share, vent about their struggles and victories with Lupus. We need each other.

You have lupus. Or you love someone who has Lupus. What’s your story?