What seemed like many moons ago, which, in reality, was only 35 years ago, I remember sitting in a doctor’s office with my mom. Now, I don’t remember the doctor or every detail, but I do remember we were there because my mom was having some weird skin reactions and her arthritis was really bad. My mom’s skin issues were new, but the arthritis was not. Mom was 45 at the time. I also remember, very clearly, the doctor using the term “lupus” when speaking to my mom. On the way home I noticed that she seemed very upset and that, in turn, upset me. From that day, I never heard her mention “lupus” again.
Mom seemed to be doing really well and I didn’t really notice any major health issues for the next 10 to 15 years. I, of course, was a little busy myself with my marriage, children, and nursing school. More importantly, Mom had embraced her role as grandmother and was really flourishing in her personal and professional life.
Then someone, or rather, some disease pumped the brakes on all of it. Mom started to develop blood clots, first in her legs, then her lungs, and small bowel. Once that was under control, with the help of her hematologist and her symptoms, we discovered anemia, autoimmune hemolytic anemia, to be more precise. Multiple doses of steroids followed by a splenectomy resolved that issue. Lupus was once again on the forefront, but this time was addressed and managed.
Once her symptoms were being properly managed, she was once again able to embrace her life with as much zest as before. Don’t get me wrong, there were definitely bad days along with the good, but the progression of serious health issues such as surgeries, hospitalizations, and blood transfusions was significantly less.
Long story short, let my mom’s past be a reminder to those of you who are dealing with similar issues to seek medical advice, become an advocate for yourself, and practice proper management. Now, I don’t know why she didn’t get treatment for her lupus long before she did, I suspect it was a combination of her stubbornness and the doctor’s unwillingness to pursue management, but I know she would want others not to make the same mistakes she did in regard to lupus.
I believe in my heart that she was scared of the disease and what it would mean for her, but once she confronted it head-on and had the support she needed, she was able to gain some control of her life back. This is what I know she would want for everyone facing lupus, be strong and courageous.