Lupus Story: ShanThom72

ShanThom72’s Lupus Story

My story began with bouts of chest pain and numb fingers by the age of 8. As my father was in the navy, I was seen by various doctors at military hospitals and underwent numerous tests, but without diagnosis. By high school I was also experiencing random, mass swelling of joints and broke out in the butterfly rash. It wasn’t until I was 15 years old, chronically ill with kidney involvement and unable to remain in school, and was taken to the local (civilian) urgent care center, that I was finally tested for an immune system disorder.

After receiving an SLE diagnosis, I was placed on the appropriate meds, including long-term steroid therapy and was able to make it through college, begin a career, get married, and give birth to a healthy baby boy, with very few symptoms. By the time I turned 30 I had the career and home of my dreams, until the SLE symptoms flared back up again. I was laid off for medical reasons two years later and began a new treatment regimen, including low-dose chemo meds. I tried unsuccessfully to return to work and after that lay-off was advised to apply for Social Security Disability. I dedicated the excess time ​to medical appointments, and found traveling to my state’s university campus hospital much easier. This made it possible for me to take advantage of resources I couldn’t while working full time, like their lupus and kidney center, as well as their dermatology and pain management departments; all of which made living with this disease more bearable on a daily basis.

It’s been about 20 years since I last worked, but I manage to live within the physical and financial means I’ve been blessed with. I am not always able to find enough energy to get out of bed, and there are days that the suffering makes me terribly depressed. But, on the other days, I try my best to eat healthy, do my physical therapy exercises and, most importantly, I always lean into my Christian faith for strength!