The adrenaline rush I got as I stepped off the makeshift stage at Pier 95 after addressing the crowd of autoimmune disease sufferers made me forget about the cold coursing through my body. But, by the next day it had faded and life was back to normal. I was coughing, blowing my nose and hoarse. I was also without direction. That speech, that moment was the highlight of years of sharing my story of fighting to identify my autoimmune disease (igg4-rd) and live with the side effects of it.
I was planning on what to do next to reach others suffering from a chronic illness and chronic pain like me when my rheumatologist emailed me. She says tests confirmed her suspicions. I appear to be in remission.
“You do not seem to have any symptoms of IgG4 syndrome- just an elevated IgG4. Please let me know if any symptoms arise and I should see you in 4 months.”
4 months? That’s the longest gap since I’ve seen her in nearly seven years, I thought. I’ve spent the better part of my adult life waiting for the next medical crisis. I’m not sure I know who I am without one. I don’t know what my mission is if not to share my musings on my medical trials.
As the next two days passed, an overwhelming sadness hung over. I felt lost. The thought that my decades of agony may not have had a purpose at all made me cry myself to sleep.
For years all I wanted was to be symptom free, I thought. I wanted to enjoy my twenties, to have children, to have traveled the world rather than visiting hospitals and spending all of my money on drugs and procedures. Now that my body has left me in debt and damaged my condition wanes. Really?
I’ve cried and I’ve prayed both about my relief and disillusionment. I’ve been stumped by little decisions like wearing my hair curly or straight. The only thing that’s calmed my mind is the notion that I should be calm and be still and wait for a sign about my future.
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