African American lupus ambassador shares her personal battle

Fifty-nine percent of Americans have limited knowledge about lupus and its destructive impact, yet one in every 200 individuals is estimated to live with lupus.

Lupus is an autoimmune condition that is invisible to others but can cause extreme fatigue, painful and swollen joints, unexplained fever and skin rash. These attacks by the immune system can also lead to kidney failure, heart and lung inflammation, central nervous system abnormalities and blood disorders.

Between 1.5 to two million Americans are currently diagnosed with lupus; 20 percent are children and 80 percent are girls. African American women are three times more likely to get lupus and tend to develop lupus at a younger age with more severe symptoms.

There is no single diagnostic test for lupus. It can often take years for a diagnosis to be made because lupus may affect many systems within the body and many symptoms of lupus are similar to those of other diseases.

Gwenevere Alexander of Mounds View, MN has been chosen as a lupus ambassador and helped gather participants for the annual Lupus Walk for Hope/5K Run held on Saturday, September 8 in the Twin Cities. Here is her story.

I’m Gwenevere Alexander. I’m 41, and the oldest of three. I grew up in southwest Michigan and attended Southwestern Michigan College.

I have an amazing daughter, 15-year-old Tayler, and an awesome 21-year-old step-daughter, Vanessa. My significant other of the past 10 years is Matthew.

I come from a very active family: active in church, active in sports (traveling softball and basketball, and football and soccer), also in charity. Basically my family works hard and plays hard.

It was four pm on July 16, 2005. I was just waking from a nap after a late night out. I was in an amazing amount of pain. I couldn’t get out of bed. I was in the fetal position. I yelled for Matthew to come help me.

When I put my feet on the floor it felt like I was walking on rocks. I couldn’t stand up straight. Everything hurt. I spent all weekend just resting and hating myself because I was tired, sleepy and achier then I’ve ever been.

After a few days I was fine. I chalked everything up to just overdoing it. So my summer continued as normal.

When the school started, I noticed that I was having a hard time helping my daughter tame her long curly hair. I was also hating doing my own hair. I had been diagnosed with chronic anemia and was told that after my hysterectomy my iron levels should return to “normal,” but that never happened. I have always been prone to sicknesses and infections.

In January 2006, my new best friend invited Matthew and I for snowmobiling for the weekend. By Sunday morning I was in the same kind of pain I was in that previous July. Again I was not able to get myself out of bed, couldn’t move, everything was hurting and now I had this strange wine-colored rash about four inches wide all the way around my ankle.

I told my doctor that sometimes my feet hurt and my fingers hurt to move. She said she wanted to take some blood tests and that she thought I may have a connective tissue disease. I was diagnosed with lupus in March 2006. A rheumatologist determined that I had Lupus, SLE with secondary Sjögren’s syndrome.

To my understanding, I was always going to be in a certain amount of pain and discomfort, and I wondered how much is too much, or had I just turned myself into a hypochondriac, blowing everything out of proportion.

No one tells you how expensive it is to have lupus. Not only do I have to see a special doctor who does all kinds of blood work on me several times a year, I also have to spend lots of money on medicine. I had to leave my rheumatologist because I couldn’t afford to continue to see her for treatment.

My new doctor was the best, very energetic and eager to help me feel better. After looking at my blood work and records,  he decided that I didn’t have lupus but that I definitely had rheumatoid arthritis. That was the most depressing six months. I wasn’t feeling any worse physically, but mentally I had the blues for sure. Plus, I was financially embarrassed.

My workplace was very good about my part-time schedule and making sure that I had Thursdays, Fridays and Sundays off since my treatments were on Thursdays. I didn’t want to be sick or feel bad at the office.

I was also grateful for my casual dress at the workplace. I’m confident I would have quit if I couldn’t wear hats and hoodies on the days that my hair was falling out or too thin, or when I just needed something easy and soft to wear.

With Tayler getting more involved in dance and just doing what teenagers do, I knew there would be more driving, picking up and more domestic things to be done. Like gluing sequins on costumes and trying to hand-sew buttons on costumes.

I was stressing because my online businesses were slowing down. I never wanted to be a burden to Matthew or my family, and dance is expensive and time consuming. So, I applied and got a full-time position within my company to be able to allow Tayler to keep busy with her dancing, and to make sure I could pay all my medical bills.

About six months into my new job, I developed pleurisy and was off work for about 10 days. The urgent care doctor advised me that people with lupus tend to get pleurisy. I decided that maybe I was pushing it too hard working full time, because I never felt like I fully recovered from my previous illness.

I asked my supervisor if I could go back to part-time work as I wasn’t adjusting well with the full-time schedule. After a few months of back and forth between my HR department and my doctor, we got it worked out and I was back to working 20 hours per week for a limited time.

What did that experience teach me? That I cannot do everything. It’s ok to ask for help.

This information was provided by the Lupus Foundation of Minnesota.