Weeding her favorite garden outside her new home several years ago, Kirkland resident Lisa Hubbell’s usual enjoyment gave way to a dull ache in her hands and feet.
“There were little signs at first,” she said.
It wasn’t until Hubbell, then in her mid-30s, began training for the Seattle Breast Cancer three-day walk-a-thon that she realized something was seriously wrong.
“I was exhausted. After that, I started sleeping 16 to 18 hours a day,” she said. “I went to the doctor … The fatigue was killing me.”
She was later diagnosed with rheumatoid arthritis (RA). According to data published by the publicly-funded National Arthritis Data Workgroup, 1.3 million Americans suffer from the auto-immune disease, which has no known cure. RA causes swelling and inflammation of the joints, and in some cases other tissue and organs throughout the body. Typical symptoms include fatigue, weakness, muscle pain and fever. The disease is commonly diagnosed between the ages of 30 and 50 years old and can affect anyone, but women are two to three times more likely to have RA.
Hubbell, 44, once an active, athletic woman at the time she gave birth to her son, gained 60 pounds after steroid treatments to combat inflammation spurred an increase in appetite, while the RA left her constantly fatigued.
“It took four years to find the right treatment,” she said. “I bet people were thinking, ‘Oh, she could just loose the weight’ … You always are wondering what people are thinking.”
A freelance journalist by trade, Hubbell’s used her skills to find an alternative to the steroid therapy she was under.
“My background has made me what some doctors would describe as a difficult patient,” she said. “Being professionally curious and nosy, it makes me ask a lot of questions.”
After reading a number of studies, conducting her own research and contacting experts in rheumatology, she was referred to a new doctor, Dr. Philip Mease at Swedish Medical Center. His background as a medical researcher allowed Hubbell to be used as a “guinea pig” for clinical trials.
Today, Hubbell has access to an expensive treatment to mitigate the pain and reduce the swelling. A recent study of RA patients, however, shows nearly 85 percent of them still experience a level of discomfort that make it difficult to perform basic tasks, such as tying a shoe.
“My life is much smaller. I don’t work as much as I would otherwise,” she said. “It has taken over my life, but I try not to let it run my life.”
On good days, she runs her son to and from school, takes care of errands, works from home and makes dinner for the family. On a bad day, she orders take-out.
Looking back on living with RA for the past decade, Hubbell expressed a deep sympathy for the silent victims of degenerative and disabling diseases in the community.
“When you see someone in a disabled spot, or they have a moon-face, you just don’t know what’s going on with them. You just don’t.”