PATIENT ARTICLE

FROM NEAR DEATH TO LIVING A FULL LIFE: HOW I DIDN’T LET LUPUS BEAT ME

TANYA D. SMITH

It was 1986 and I was in the prime of my life when I was blind-sided by Systemic Lupus Erythematosus (SLE). I was away at college when I began having severe joint pain and stiffness. Because of my symptoms, I transferred back home to be near family and friends after completing my Associate of Arts degree. Good thing I did because that is when I had my first major flare—lupus cerebritis. I was admitted to the hospital where I spent several weeks. During that time, the disease was attacking my brain and I was in and out of consciousness for over a week. My family was told I would not survive and if I did, I would be a vegetable. I survived. I am truly a miracle here by God’s grace, mercy and many prayers from family and friends.

After my hospital stay, I had a long road to recovery. Life for me was different than before. I had to adjust to my new normal; life as a person living with lupus. I learned what triggers my lupus, what foods to avoid, and how to modify my activities. It was difficult at first, but I learned to manage. I still like to take walks or drives in the park, go to the movies, go to picnics, amusement parks and carnivals, etc. I just do them later in the day to limit my exposure to the sun. As the days and years went by, I learned to live with lupus.

However, one of my biggest challenges was to learn to accept my appearance. The medication I had to take to survive had caused my hair to fall out leaving me with bald patches. Hence, I had to wear wigs. I was fortunate that my hair eventually grew back. And we all know about the drug induced weight gain causing the moon face and Santa Claus belly. I had to accept the fact that I am no longer that skinny girl who could eat or wear just about anything. My suggestion is, learn to love yourself despite the pounds. After all, you are still the same person, just a bigger version of yourself.

Once I regained my strength, I returned to college and earned my bachelor’s degree. After that, I entered the workforce full-time, and I have been blessed to be able to hold down a full-time job. Things were going smoothly for a while then lupus attacked my kidneys—lupus nephritis. More meds, more weight gain, ugh. Here again, lupus affected my work-life balance. During this time, I changed departments at work three times, was a caretaker for my mother until she passed, and met and married my husband, Lavoris (aka Rick). We have been together for 16 years. Rick is a wonderful person with a kind and gentle spirit. Besides my mom, who has since passed away, he has been my greatest supporter and my biggest cheerleader. He encourages me to go after my dreams. Anything I want to do, he always tells me, “You can do this!”

It had been a dream of mine to go back to school, so now I am currently enrolled in school part-time to earn my master’s degree. I was already juggling working full-time, raising a grandchild that has developmental disabilities, and being an independent business owner. Now I have added school to my plate. This was a tremendous change for me because I had been out of school for over 20 years. I see it as a good change.

Over the years, I have had a lot of changes occur in my life; some good and some not so good. As a person living with lupus, I feel it is important to embrace change. Afterall, our reality changes from day to day when living with lupus. Do not be afraid to ask for what you need whether it is work, school, or living accommodations. Do not look at it as, I no longer am able to do x, y, z, but rather as in what ways can x, y, and z be modified so that it is achievable for me. Sometimes we just need a little modification to get the job done. I refuse to let lupus beat me. My favorite quote is Philippians 4:13: I can do ALL things through Christ Jesus who strengthens me. Remember you can do all things with a little faith.