It’s rare that I post but I felt compelled to do so for rare disease day. Less than 24 hours ago, I spent hours at NYU Langone seeing specialists to deal with a new “side effect” from living with the autoimmune disease, IgG4-rd. 

Chronic stress can exacerbate the development and progression of autoimmune diseases. I am sure my chosen career has not helped my health. Menopause isn’t doing me any favors either. Hormones also play a major part in how the immune system responds.

At this point, at least half of my paid time off per year is used for medical visits. This year I may to use even more than that. A greater portion of my income will also go to medical bills. Why? I will have my 37th surgery in a matter of weeks. 

What I have learned is each day living with a rare disease is unpredictable even when you stick to a consistent drug, exercise and nutrition regiment. So, today, instead of succumbing to fear and wallow in self-pity I’ll laugh hard, play hard and do what I can so the days I can’t sting less. 

“When you know you’re rare, you move different. You love different. And you don’t waste your rarity trying to convince anyone of it.” — Unknown

#igg4 #chronicillness #autoimmunedisease #rarediseaseday #spoonie