When I moved to North Carolina 18 months later and talked to my new doctor about my lupus, he said, “Honey, you dont have lupus, you have rheumatoid arthritis.” I was thrilled! While painful, RA is an easier disease to deal with on a day-to-day basis.
I was initially treated with anti-inflammatory drugs. At one point, I was taking up to 12 aspirin a day, but my ears were ringing. My doctors said, “Oops! Thats a problem.” They took me off aspirin and I embarked on a 15-year cycle of experimentation with different anti-inflammatories and disease-modifying antirheumatic drugs (DMARDs).
I hated taking the drugs and didnt appreciate the importance of trying to impact the progression of the disease and the joint deformity that can happen with RA. My doctor would put me on a path of medication and I wouldnt follow it. He and I had a love-hate relationship. I wouldnt go in to see him because I didnt want to take the drugs. I can be stubborn, but I was also in denial that I had a chronic disease that I needed to manage.
The drugs were helping me control my painbut barely. I owned a coffee-roasting business, and work was physically demanding. But quitting wasnt an option. I was terrified of having a 9-to-5 job where I would have to get up, wear panty hose and high heels, and arrive early in the day.
My husband had to help me brush my teeth and dye my hair. My hair was short because I couldnt wash it very much. For a year, I could only wear tennis shoesanything else was too painful.
Living in my bedroom because moving was unbearable
Eight years ago, I became the president and CEO of Gingrich Communications. Because I had the flexibility, my desk was in my bedroomtwo steps from my bed. Some days that was too far. I would work from bed and take naps. I never got out of my pajamas and traveled as little as possible.
My ability to function was decreasing every day.