PATIENT ARTICLE
TANYA D. SMITH
FROM NEAR DEATH TO LIVING A FULL LIFE: HOW I DIDN’T LET LUPUS BEAT ME 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 diffi-
cult 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 MAGALIVING WITH LUPUS MAGAZINE ZINE
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