Blind in one eye, two lesions on the brain, three different infusion types, infusion at the Cancer Center ever 28 days, multiple autoimmune suppressant medications, multiple prescriptions, MRI’s and CT’s every 4-6 months, blood work every month, physical therapy, concussion and traumatic brain injury, heart monitor, Syncope. How did I get here?
I have 2 rare, autoimmune disorders. One a demyelinating disorder where the immune system attacks the myelin coating of the nerves in the central nervous system (brain, spinal cord, and optic nerves). The other an antibody-mediated autoimmune disease causing recurring, painful vision loss.
My journey with this disease began at 14, when I suddenly lost vision in my left eye during volleyball practice. After 6 months of testing, MRIs, doctor visits and feeling like a pin cushion, I was diagnosed with Optic Neuritis. Inflammation of the optic nerve. And because we did not catch/diagnose the swelling in time, the nerve was dead. No rhyme no reasoning, just that I caught a virus, and now blind in one eye.
Despite this, I learned to adapt, continued to play sports, and lived a full, pretty normal life. No medication, checkups, and sometimes forgetting I was blind in one eye.
However, in my mid-20s, the symptoms returned, I immediately knew the feeling, taking me back to 14 years old. This time affecting my right optic nerve. It was happening all over again. This time, diagnosed with Chronic Relapsing Inflammatory Optic Neuropathy (CRION) a rare, antibody-mediated autoimmune disease causing recurring, painful vision loss that responds to steroids but relapses upon withdrawal.
But this time, it wasn’t just the eyes. Body aches, pain and fatigue. Headaches, migraines, and light sensitivity. Body swelling, muscle loss and weakness. More testing.
Myelin oligodendrocyte glycoprotein antibody-associated disease (MOGAD) is a rare, autoimmune demyelinating disorder where the immune system attacks the myelin coating of nerves in the central nervous system (brain, spinal cord, and optic nerve). Turns out it can cause severe, sudden attacks like vision loss. Ding ding, we have a winner!
Two! Two rare autoimmune disorders. How did I get so lucky? My care involves a dedicated, wonderful team of neurologists, rheumatologists, nurses and more.
Managing this disease requires ongoing infusions, regular scans, blood work, and a daily regimen of prescriptions. Even with insurance, the cost of my care is overwhelming and has resulted in significant medical debt as well as other financial burdens.
“But you look fine!” “You would never know!”
“You’re always smiling!” “You don’t look in pain!”
This isn’t a bump on my arm, or a scratch on my leg. It’s internal. And for me, I’ve never wanted to “Show It” or “Tell It”. I’ve always wanted everyone to know me for me, I am Jocelyn. I am not my medical.
But it sure has changed my life. I question my future. I wake up wondering if it might come back. And it’s stolen so much from me. I am 32. I want to live a full life, free from the anxiety. Free from the disease. Free from the mounting bills.
And every day I wake up I choose to keep going, because the other choice, is a road I have seen too many go down. Supported by my doctors, family, and friends I choose to take it 24hrs at a time. The worry is there, it always will be. And trust me, I have my bad days! But I do my best. Because behind me is a story that gave me no choice, and even though I may not always be strong, I choose to always be brave.
Your support will help me continue my treatments and move forward with hope. Thank you for being part of my journey. ♥️