A year ago, I accepted the position of Opinion Editor at the Courier Journal in Louisville, Kentucky. This is my first “real job” since 2010, when I was the executive director of a small community center in Michigan, while also writing for magazines on the side.
I was 35 when my joints started to swell. Then the pain set in and the fatigue forced me to take daily naps. My doctors couldn’t figure out what was wrong, but my knee needed surgery. In the recovery room I finally got the diagnosis: psoriatic arthritis. It’s difficult to diagnose. There is no blood test for the disease.
My orthopedist referred me to a rheumatologist, who told me that if the diagnosis had been made 40 years earlier, I would not have lived to be 50.
But with modern medicine in America comes an unsurpassed bureaucracy. I jumped through the cruel hoops my insurance company required in order to access the drugs I was told would save my quality of life. Insurance companies call it “step therapy”, It’s basically their way of getting you to try the cheapest drugs first if they’re good enough.
It didn’t matter what my doctor said. It didn’t matter that it would cost me a job I loved. It didn’t matter that pregnancy wasn’t possible while taking these drugs, so I would have to give up that dream as well. So I took the meds and walked with a stick when I wasn’t in bed, on a heating pad with painkillers to calm me down.
My body broke and so did my heart.
I switched to see a rheumatologist in Chicago at Northwestern University and took the train from Western Michigan to see him. He kept appealing our insurance company’s decision until they agreed to pay for the biological treatment. I slowly began to crawl out of the clutches of this disease. I got my quality of life back and started freelance writing again.
The disease has not stopped, only slowed down. I still have days when I need to rest. I also need to keep my pace and prepare for long periods of activity.
The pandemic has shown the world that remote work is productive. It could be an enduring reality for many industries — including journalism. I don’t know if I would have even attempted to apply for my current job if I hadn’t been confident that I could do some of it from home. I like being in the editorial office, but I also like the flexibility that relaxing days at home bring. Even on days with severe pain or fatigue, I can work from my laptop in my pajamas, even from bed. My brain works well and I enjoy using it.
I am 47 years old. I’m very aware of the 50 year mark that the rheumatologist mentioned, but I don’t plan on stopping anytime soon. I have many expectations of my life and there is much I still want to do. I also know that no matter when I die—whether I’m 50 or 90—I’m still running out of time.
Watch Bonnie’s weekly YouTube videos at www.youtube.com/bonniejeanfeldkamp.
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