"I am the FACE of LUPUS"
It’s amazing how often people stare at me and say, “You don’t even look sick!” I’m sure that many other people living with lupus have heard that line more times than they’d like to mention. Lupus is a disease that affects everyone differently. Most days, I run a fever, suffer severe joint pain, stiffness and fatigue. My hands, hips and toes hurt me a lot. I have trouble with inflammation.
When first diagnosed with Lupus, I felt my world crumble. I was a young mother of four active sons. Then, without much warning, I woke up to a living hell. One morning, I opened my eyes and realized that I couldn’t lift myself out of bed. Symptoms of swelling, fever, pain and fatigue sent me from one doctor's appointment to the next. I remember the day that I lost my sight for a matter of minutes. My hair became very brittle and would shed all the time. I was starting to feel nauseous most mornings. Doctors I went to for help seemed clueless! I heard, “Maybe it’s M.S., maybe it’s Hoskins disease, maybe you are just stressed…”, my body was weakening and I was nearly at the point of death as sudden weight lost of over 20 pounds occurred and burning sensations began to move all through my insides. It felt like someone had set my organs on fire, I lost hope and at that time wished I would just die.
Somewhere in between begging to die, an amazing thing happened in my life…I started to think about LIVING. Things I had never done, places I had never been and goals that had not yet been checked off my list begin to give me enough will power to continue fighting.
The last physician I went to for help threw my medical records across the table and said, “DeVonshae, I don’t know what the hell is wrong with you! We’ve got to do something or you won’t live!” He told me that the only thing he could think of was lupus. Just hearing the word brought fear to me. I had heard of people who died from lupus. I knew people often became wheelchair bound from the disease. This doctor ran all of the necessary tests. I am grateful because after the results came in I started taking 200 mg. of Hydroxychloroquine twice a day. It worked like a miracle drug for me. It took about a week or two before I started to feel like myself. My fever went down and stayed down. My body didn’t feel as achy and I found a renewed sense of empowerment to live my life better than before I had the diagnosis.
It’s been about six years now! I have fulfilled my dream to be a writer by publishing four books and writing for a local magazine. I help spread awareness about lupus to others by speaking at different functions, participating in lupus walks and helping to raise funds for the cause. I have returned to school to pursue another degree. There are still days when I have flare ups that keep me in bed, but I haven’t had to be hospitalized. The few flare ups I’ve had are nothing compared to that first major crisis so I count myself blessed.
I want to encourage those who are battling this disease to focus on living and doing things that you enjoy. It is possible to live a normal and productive life. Take your medicine and try not to get stressed because that makes symptoms worst. Remember, lupus is what you have, but not who you are!