The year was 1978. I was a newly married, 25-year-old registered nurse working on a medical unit at Mercy Medical Center in Oshkosh, Wis. I began to notice morning stiffness, increasing fatigue, and bilateral heel and ankle pain. Every step hurt as I walked down the halls to care for my patients. My diagnosis was early rheumatoid arthritis (RA), confirmed by blood work.
I began a daily regimen of 13 enteric-coated aspirin a day, which did nothing to help the pain and stiffness I felt. In the next 40 years, my RA would force me to undergo 14 orthopedic surgeries, give myself daily and weekly injections, swallow thousands of pills and become the patient of an array of healthcare providers. As I look back on those 40 years, I am thankful that I was able to live a fulfilling life as a wife, mother, grandmother, nurse and friend. Many people were placed into my life at just the right time to give me the right treatment, counseling and support I so desperately needed. I want to introduce some of them to you. And alert you to some of the lessons I’ve learned over the years.
Don’t Miss the Fun Stuff
The foundation of an RA patient’s care should be a rheumatologist. I have been the patient of five rheumatologists during the course of my arthritis. Jeanna Owens, MD, was the second one who cared for me while I lived in Wisconsin. She was a very wise doctor.
In 1990, my family planned a trip to Walt Disney World. Shortly before we were to leave, my symptoms began to flare. I told Dr. Owens that I had decided not to go along to Florida. She looked at me, raised her eyebrows and firmly said, “Oh yes, you’re going. I want you to rent a wheelchair and ride in it. You will save energy and can still go along.”
I took her advice. Our family was able to do everything we wanted and because I was in a wheelchair, we were escorted to the front of every line. My daughter, Laura, remarked, “Boy, this is great, Mom! That’s one good thing about your arthritis. We get to be first in line.”
Ask for Help
One of the hallmarks of a good rheumatologist is the ability to observe, analyze and uncover the often-subtle symptoms of RA that may go undetected for years. It takes time to completely review a patient’s extensive history to determine the optimum treatment for that patient. Eric Gowing, MD, was able to do that for me while I still lived in Wisconsin. After pouring over my history, he saw red flags, which he clearly explained.