For starters, I just want to say if you happen to find yourself on this page, I am sorry, seeing that it is some kind of pain that probably brought you here. However, I do believe we can restore and support one another by sharing our beautiful but sometimes painful stories with each other. I’m in the affair of learning to have benevolence for both the lit and ill-lit that lies within me, just like you. I know what it feels like to have abundant pain on the inside but look fine on the outside, and I’ve struggled with it since 2013. I currently suffer from Devic’s disease (NMO), systemic lupus, hypothyroidism, depression, and optic neuritis. I was diagnosed with NMO in October of 2019 after they found five brain lesions and optical neuritis. Being a part of the rare disease community and the lupus family has made me feel less lonely in my trial.
I battle with fatigue, painful swelling of my joints, muscle pain, nerve pain, periodic vision loss, severe migraine, spasticity, periodic gastritis, and weakness/numbness as my main ones. Every two weeks, I sit in a chair while I get an IV infusion for my treatment for NMO (life-long) in hopes of not having another relapse. I’ve also dealt with severe bouts of depression since 2017; I self harmed 6 times in 2018; truly a dark year of mine. I believe in the healing power of Christ, but I also believe that without pain, we’d not know the beauty of healing and miracles.
Lupus sprung up on me in September of 2013, at age 21. It was only a month later after I had moved off to Colorado for school and work that the pain had started. I was working with special needs children and started my masters program on campus in Colorado Springs in August. One night my shoulder started burning and when I woke up I was limping and barely able to brush my hair or move my fingers. I was misdiagnosed at first with RA. My RF (rheumatoid factor) was 640 and to be normal it will usually be below 10. The pain just started spreading slowly to different areas until I was diagnosed in April of 2014 with systemic lupus erythematosus.
I ended up with hypothyroidism in 2017 after I was experiencing extreme fatigue and mood swings. And in October of 2019, I was diagnosed with Devic’s disease. The summer before that October, I had lost sight in my left eye, was throwing up everyday, couldn’t eat, and had a migraine for close to two months. They couldn’t find anything wrong with me. When October hit a couple months later, I lost vision in my right eye and had extreme head pain. That’s when all my MRI scans showed 5 brain lesions and optic neuritis.
Most times I pray, but sometimes I cry and sometimes it’s a mixture of both. There is so much pain, but also much hope. At first I had asked God why do I have this pain? Which slowly turned into Lord, what do you want me to do with this pain? How do I glorify you in this?
I felt warm when I felt His sweet answer one day. Rejoice always, pray without ceasing, give thanks in all circumstances; for this is the will of God in Christ Jesus for you (1 Thessalonians 5:16-18). I have learned it’s possible to feel the pain of disease, yet still have your heart feel joy. How is this possible? This is where I can point to Jesus Christ. This is where I can glorify God.