Snow blanketed the cities below us as we flew from Newark to Detroit for the day. As our plane climbed higher, I thought, this is the first time I’m not afraid to be in the air. I stared out the window and thought about what I could add to the discussion: “What every American needs to know about autoimmune disease.”
I’m an example of the damage diseases can do and how to live with it, I thought. I had a procedure 3 days ago and got to the airport on time with no sleep. I can deliver a message of perseverance.
Before we got to the AARDA seminar, United Airlines sent a text informing us our flight home was cancelled. We had no hotel and I wasn’t sure I could afford an overnight stay. My “extra money” was allocated to filling stockings for the homeless.
The text combined with pain in my spine/legs after walking through two airports and taking items on and off while standing without my cane at security checkpoints made me cry. I exclaimed, “I want to go home.” My fiancé’ replied, “we came all this way for you to speak and sell some books; that’s what you’re going to do.”
When we walked into the seminar, people were listening to a string of doctors. “They’ve gotten medical information, I need to speak from the heart.”
I talked about misdiagnosis, not appearing sick, and the financial toll, fear and depression tied to living with a chronic illness. Then, I said “don’t give up, advocate for your health, listen to your body, seek out support and information, and take joy in small things.”
At the end of my q&a, a woman said, “God sent you here to save a life. I didn’t want to keep going but you gave me hope.” As she teared up, she handed me a note that said: “I have instant respect, love and admiration for you. God bless you.”” Her sentiment was echoed by other women.
By the time the sun set, my fiancé and I headed to Chicago for a flight to NJ. During our 4 hour layover, my fiancé told a woman about my speech. She shared her son-In-law’s battle with lupus. She concluded that he was grateful to be alive. I thought, I feel the same way.
(P.S. we got home at 2 am but I got up at 8 to go to the store to buy the items to fill my stocking. I rested afterwards)
#autoimmunedisease #invisibleillness #chronicillness #chronicpain #igg4 #lupus #disability #detroit #newark
#spoonie #UnitedAirlines #aardatweets
Beautiful. Take joy in small things in such important advice. That’s pretty much the only way I cope with my chronic illness. Thank you.