Courage is facing adversity and fear and continuing on your journey regardless. As I face each day with Lupus, I try and remember that there are so many others who suffer far worse than myself. I limit my complaints. I try to find ways to make it seem to everyone around me that I am still there for them and living my life; that it is I, not the disease that is in control. I grieve for those whose battle is beyond my own, enlisted in an ongoing war for survival. Truth is all “Lupies” are at war, it is just the intensity and determination of our enemy on the battlefield that varies.
My journey has been a long one. I was 17 when I first developed a rash around my eyelids and across my cheeks that my doctor deemed an allergic reaction, gave me a steroid cream and sent me on my way with what was a tell-tale butterfly across my face.
At 19, Raynaud’s Syndrome appeared and worsened with each passing year. I had digestive problems, pancreatitis and constant lung issues. By my 20’s, married with two children, I still had no diagnosis, but I had a very positive ANA test and was sent from specialist to specialist looking for everything from Rheumatoid Arthritis to Multiple Sclerosis to Fibromyalgia. My then-husband was not supportive or sympathetic and it felt like every challenge was met with aggression and no assistance.
I learned to simply keep going and complain only when it was obvious that I needed to go to a hospital. I made adjustments to my schedule, enrolled in college so I could obtain a career in journalism, something I could manage when sick. I reinvented all I was to accommodate all of my challenges.
By my mid-30s I divorced and had a period where Lupus went dormant and diagnosis was still years away nestled in the life I was trying to create.
All "Lupies" are at war, it's just the intensity and determination of our enemy that varies.
I reinvented all I was to accommodate all of my challenges.
There is a saying I try to live by, “When something bad happens, you have three choices. You can let it define you, let it destroy you, or you can let it strengthen you.” Flares had appeared throughout my life with hair loss, mouth and nose sores, joint pain, kidney and lung issues and blood flow problems. I reached a point that I felt strength in the fact I had miraculously endured.
Finally happy, I remarried and had two more babies, one difficult pregnancy, the other without worries. Suddenly, a flare brought painful unexplained pleurisy and red scaly disc-like rashes on my arms and upper thighs. More tests from a new rheumatologist looked at my titer levels for the first time. Normal results being less than 1:80, mine was 1:630. Several biopsies on the discoid rash were inconclusive, but for the first time ever, a specialist told me he thought I had Lupus. I panicked at first, than I thought about it and realized that the label did not change anything, it simply let me see my enemy through the endless fog on the battlefield.
In 2012, tests discovered swelling in the right, top and bottom chamber of my heart and fluid in the sac surrounding it. I was put on an antimalarial drug and steroids to reduce the swelling. My diagnosis was Lupus, 28 years after my first symptom. But obtaining a definitive diagnosis did not destroy me, nor will I let it define me. If I learned anything it is how to persevere, survive the next battle, show strength even when I feel weak and to never give up.