'There is nothing “mild” or predictable about this disease, even three months in.'
. Even though I have MS, my autoimmune disease does not limit my life. Prior to contracting COVID-19 I was active and fully ambulatory, worked a demanding job, and was fortunate to have what I consider above-average stamina.The author, masked and with her oximeter around her neck, on a walk in her Jersey City neighborhood with the Freedom Tower in the background in June 2020.
Most of us long-haul patients have been diagnosed with “mild” or “moderate” cases because we don’t need intubation or prolonged hospitalization, but don’t be misled by that. Just two weeks ago, I was in the ER for the fourth time with reoccurring flulike symptoms and an uncomfortable tingling in my arms and legs. A few days later I had the energy to work in my garden for several hours, but two days after that I almost passed out before breakfast.
“My doctor said I have a mild case and to rest at home, but that was a month ago and I’m not getting better. I’m really worried.” I cannot tell you how many phone calls I have made in the past three months figuring out first how to get tested and then how to get the other tests and services that I need. The nurse case manager at my doctor’s office has helped with these calls as well. Even with her help, it hasn’t been easy. We have even been told conflicting information by different people at the same facility.
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