Most people do not spontaneously go to the beach on a Wednesday. But when Doines (Dawn-ess) Guevara has a good day, that is exactly what she does.
When you live with psoriatic arthritis (PsA), you have to fully embrace the good days because you never know how long it will be until the pain returns. Life with PsA is a journey that is never a straight path, says Guevara. When the pain is manageable, “this could be a great month or a great week, so make it really good,” she says. “Live it really well – the best life you can – because you’re in control right now. Before the PsA hits again.”
For Paul Kalousek, who also experiences PsA, it is a matter of finding the right motivations. “Being active and positive, being with other people, and having a good sense of humor about the whole situation” helps him get through it, he says. “Because life is beautiful despite it all.”
As inspiring as Guevara’s and Kalousek’s philosophies are, they are only part of a bigger picture that includes struggles, frustrations, worry, and all the bad days in between.
Doines Guevara’s Story
Guevara, who lives in San Diego with her family, is minutes away from some of the top medical facilities in the area. Her PsA is currently well-managed with the help of a biologic that she has been on for a few years, but it took decades to get to this point. Guevara is originally from Guam, one of the small islands that make up Micronesia in the Pacific Ocean, and her doctors there did not know why she was in constant pain. “I was always in pain. It was always like this throbbing pain, and nobody could see it,” she says.
It was difficult to even walk to the bathroom, remembers Guevara, and she used the maximum dose of pain medication just to take her kids to school. “The pain was so much that I had lost almost 30 pounds doing nothing, because I didn’t know when I was hungry,” she says. “The pain was louder than the feeling when I was hungry.”
Fortunately, this is no longer the reality for Guevara. “I actually got diagnosed here in San Diego. I was on a business trip,” she explains. “In five minutes, he diagnosed me for sure. He goes, ‘You have psoriatic arthritis.’ That was the first time I heard that.”
With a diagnosis at last, treatment became the next hurdle, particularly because the options for Guevara in Guam were few and far between. She ended up traveling back and forth to Hawaii – a nearly eight-hour flight one way – for treatment during the course of several years.
Eventually, Guevara decided to move her family to California, where her treatment would be much more accessible. Although the delay in diagnosis and treatment led to permanent joint damage, she is happy to report that her recent scans look the same as those from more than a decade ago. The disease progression has been stopped.