Lisa Maglione was enjoying her retirement. The longtime Santa Barbara County educator and her husband traveled back and forth between homes in Santa Barbara and Italy, and they loved outdoor activities like swimming and hiking.
But all that changed about two and a half years ago.
"I was not walking. I was not talking," said Maglione. "I couldn't answer yes and no questions. I was confused. I was in extreme pain."
According to Maglione, her doctor was puzzled.
"I saw about six specialists. I was getting worse and worse. I mean, I used to swim at the YMCA, 60 laps three times a week. My husband and I got engaged while we were backpacking. My ability to sustain energy was decreasing, and I got to the point where I could only walk 30 feet."
Finally, she said, her doctor figured out that she was suffering from what’s known as long COVID.
"He said, 'I think you have PEM.' ... Post-Exertional Malaise, and it's where you exercise, and later your body just doesn't have enough energy to turn over, and you kind of crash.' I said that was exactly what was happening to me," said Maglione.
She'd take a walk and have to lie down for two hours. The doctor told her she thought she had long COVID.
"If you asked us three or four years ago, no one could have answered, or acknowledged that there was such a thing as long COVID," said Dr. Mouhanad Hammami, Santa Barbara County’s Public Health Director. "Some of the patients that had either recurring infections or recurring cases of COVID, or they had chronic infections that lasted longer than others, we started seeing after a while different symptoms that can range from neurological to musculoskeletal to symptoms that no one knew what to attribute them to."
Hammami added that an estimated 12 to 20% of people who get COVID-19 get long COVID, with a wide range of health impacts.
"Headaches ... neurological disorders, sometimes muscle weakness or low degrees of paralysis are some of the things associated with it."
Plenty of research into long COVID is underway, but as of right now, there is no cure. Treatment is focused on dealing with the different types of health issues it creates.
According to Maglione, once her primary care physician figured out she was dealing with long COVID, he and the specialists were able to get her prescription medications to help.
She started researching it herself and connected with some of the leading doctors in the long COVID field, who helped with her treatment plan.
Still, she's nowhere nearly as energetic as she was a few years ago.
"To your ten dollars of energy, I have about one dollar," said the retired educator. "I pace that energy throughout the day."
How is she doing today? It’s an emotional question for her.
"I don't know, I'm just glad to be vertical. I'm glad to be able to talk to my kids. I'm a confident person, but my body, I don't know that it's going to allow me (to do what I want to do) with this illness."
Maglione added that she’s glad to speak out about long COVID because she knows others are battling it. But they often don't know what they're fighting. They're also unaware that there's more information about it and resources available to help, if you know where to look.
