I have had rheumatoid arthritis (RA) for more than 20 years. When I was 24, like so many people with RA, I was misdiagnosed. I had been living with the skin disease discoid lupus since I was 14, and my doctor just assumed my new symptomschronic fatigue, achy joints, and full-body painmeant that I had developed systemic lupus.
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).
The ups and downs of treatment
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.
A biologic changed my life
God bless my rheumatologist. He tried for more than a year and a half to get me started on a biological DMARD. I resisted until one of my ankles was freezing up and it was likely I would lose my mobility. I went back to my doctor and said, “I give up; Im done; Im willing to try it.” So, five years ago, he put me on a biologic, and within a very short period, my pain level decreased substantially and my mobility and energy improved.
If you were to look at the revenue stream at Gingrich Communications, you would see a tremendous spike at that time due to the variety of work I was able to take on and the amount of energy I could exert.
Now my office is in the next room, but we also have an office in Miami that I visit two to three times a month and a D.C. office I visit frequently. I dont have to take an hour-and-a-half nap each day. Instead, I use that time to work out with a personal trainer.
Last year, my sister and I fund-raised and participated in the Arthritis Foundations (AF) marathon in Athens, Greece. Just a few weeks ago, I completed the Dublin Marathon. Having the opportunity to train and accomplish that was a joy and, as a board member for the AF, I am a huge advocate for the prevention, control, and care of arthritis.
Now I'm blessed with almost no pain. The pain I do have is from muscular overuse, not my joints. X-rays have confirmed that the disease is not progressing or deteriorating my joints.
When you are living with chronic pain, it saps your energypsychologically, emotionally, and physically. Without that disease on my shoulders, I've been transformed. I can do a lot more and I'm physically able to carry out the dreams I have for my future.