Biloxi- born Stephanie Duprey Mathes works as the director of technical assistance and training for a Washington, D.C.-based national organization. Previously, she was the co-founder, COO and CEO of CLIMB CDC — a local workforce development organization.
MY HEALTH CHALLENGE
I have several auto immune diseases, specifically lupus and rheumatoid arthritis. I became ill suddenly in 2016 with swelling, pain and an unbelievable amount of fatigue. I thought it was from eating Doritos and that it would pass, but it didn’t. I quickly gained over 25 pounds in fluid. The pain prevented me from being able to walk on my own, open a can of soda or perform normal tasks like blow-drying my hair. The pain was horrific; my husband and I thought for sure I was dying.
Heat helped, so throughout the night, we moved large heating pads to wherever hurt the most. I would black out suddenly without warning. My husband would drive me to work and sit in my office so I could fulfill work responsibilities. I was the CEO of CLIMB, and not working wasn’t an option.
The night before my diagnosis, I would have amputated my own leg because the pain was terrifying. I visited my primary doctor several times, and although all the tests were normal, he knew something was wrong.
He called another doctor and asked him to see me quickly. He ran a lot of tests and sent me to another doctor, a rheumatologist in Gulfport, who was my saving grace. She told me my diagnosis was lupus, and neither my husband nor I had ever heard of it. We were just happy it wasn’t cancer. Although lupus isn’t cancer, it is not quickly remedied; we soon began an unfamiliar, scary journey that included seven-hour transfusions at the hospital, medication that makes your hair fall out, steroids, weight gain and an inability to do your normal activities.
MY APPROACH
I grieved at first because I always have been independent and capable, and suddenly, I was neither. I was grateful because I had a wonderful husband, children and friends who I could depend on. I felt blessed because God was always present. Some people with lupus go years before being diagnosed, and it was six weeks for me. Some people can’t afford medication and treatment, and I never paid a dime out of pocket. Some people do not have support, and I do. Lupus sometimes attacks vital organs, and it did not in my case.
MY TREATMENT
I have been on several different medications, including infusions at the hospital and weekly shots and pills. The trick with lupus is finding one you respond to. People can live a normal lifespan with lupus, but the pain can make you question that. Sometimes, I think I cannot live like this forever. At times like that, I pray for strength and understanding, and God always responds. I get a new regimen from my amazing doctors and keep going.
THE HARDEST PART
The hardest part is not being able to do all the things physically that I want to do. I am weaker than before. I am more tired than before. It takes me longer to recuperate and recover from the smallest things. The most rewarding thing is knowing God is always present, and lupus reminds me of that constantly. The love and support of others, especially my family and husband, is my blessing. I also have had many opportunities to talk with people who were recently diagnosed to share what I’ve learned and encourage them.
WHAT LIFE IS LIKE NOW
Life is slower, which some will think is crazy because I go all the time and I am very active in my community. I travel a lot, and I just keep going. I know I cannot stop. If I stop and succumb, lupus wins.
HOW THIS EXPERIENCE CHANGED ME
It has changed everything. I just fight and seek out all the assistance I can: personal trainers for strength, massages for pain relief. Some days, I can’t walk because the pain is so bad. Other days, it’s better, but it is never gone.
I am most proud of the fact that I have learned how to keep going. I am not a survivor; I am surviving every day. I live with pain and fatigue, and yet I keep going.
MY ADVIDE TO OTHERS
Lean into God and family; it does not make you weak. Be kind to yourself. Give yourself the same grace you would give another person. Find every way you can to continue living this beautiful life we have been gifted. This is not our forever home, nor our forever life.