A Living Example Of A Life With Chronic Illness

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 Im 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.

Im 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 wasnt 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 fianc replied, we came all this way for you to speak and sell some books; thats what youre going to do. When we walked into the seminar, people were listening to a string of doctors. Theyve 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 dont 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 didnt 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 fianc and I headed to Chicago for a flight to NJ. During our 4 hour layover, my fianc told a woman about my speech. She shared her son-In-laws 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)

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