Tina M. Ridler, owner of Purple Sage Wellness in Rochester, remembers how her COVID-19 journey began. It was March 2020, and the virus had not officially hit Rochester. Yet she and her partner both came down with respiratory symptoms, and her partner was briefly hospitalized. There were no tests available for COVID-19 at that time, so once he was stabilized, they stayed home to rest and recuperate. Their business shutdown proved to be longer than anyone had imagined.
“At that time, they were telling us to stay out of the ER and stay home if possible. So I never went because I could breathe. There were no COVID tests at that time, it was so early, so we got a provisional diagnosis, and we just did self-care at home, like for the flu,” says Ridler. “I remember feeling really fatigued, so I thought, well, I can use the quarantine to rest.”
Within a month, it was clear things were not improving and that her health was not returning to normal, which, for Ridler, was stability after years of working with her general practitioner at Mayo Clinic to manage her autoimmune and endocrine diagnoses. By April 2020, Ridler was having shortness of breath and was unable to go up the stairs more than once a day. Her hair turned white, which she, of course, dyed purple. All of her health issues, so carefully under control, now “ramped up to 11.” Swelling, edema and vascular pain followed.
“At this point, we were still doing telemedicine, so I didn’t actually see a doctor in person all through the summer. Many of my post-COVID symptoms were what I called a ‘carousel of badness.’ When one thing was handled, another thing would pop up. Overall, there was a sense of aging prematurely, of fatigue and breathlessness.”
Then, in 2021, Ridler began to experience cardiac symptoms. Tests indicated tissue damage to the ventricles of her heart, which explained her racing heart and flip-flopping blood oxygen levels. Blood clots, strokes and heart attacks are other potential sequelae from the novel coronavirus.
“This isn’t a respiratory disease, like the flu, as we all thought at the beginning of the pandemic,” Ridler says. “It’s much more than that. It is a full-body clotting (and micro-clotting) vascular and inflammatory condition that also causes micro-injuries everywhere. COVID patients are also reporting immune responses from previous viruses they have had, so there may be an immunosuppressive response going on.”
It was at this point that Ridler contacted local leaders about starting a Facebook group that would be a resource for community members about COVID-19. And the rest, as they say, is history. The resulting group, called Flatten the Curve, has become a go-to Rochester and regional resource for information on the pandemic, with everyone from City Council to Olmsted County public health officials joining in. It’s also become one of the best examples of what social media can be—a civil discussion group dedicated to sharing good information and hammering out facts and best practices from science.
She didn’t stop there. Long Haul Sally, Ridler’s Facebook and Twitter accounts, chronicle her long-hauler experience, with a focus on the particular concerns of those dealing with the viral aftermath. “It’s important to make a distinction between ‘long haulers’ and ‘long COVID’ patients” Ridler says. “Not many people realize this, but ‘long haulers’ are those who contracted COVID early on, but may never have seen hospital time. They just convalesced at home. Those with ‘long COVID’ came a bit later and may have been hospitalized and are now dealing with life after intubation, for example. There’s a lot of overlap between the groups, but it’s important to make that distinction for study and caregiving purposes.”