Discussing All-Things COVID with a Lupus Advocate
Last updated: May 2023
COVID has been with us for over 18 months now! It’s been tough for everyone but especially for those of us who are severely immunocompromised. Today I sat down with a friend, and fellow lupus patient, and advocate to discuss COVID.
Tell us about yourself
My name is Amy Nora, I am in that lovely midlife range of 40 years young, and I live in Southern Michigan. I spent 20 years working in the retail pharmacy setting before I was forced to leave the workforce on disability. I am an avid reader, dog lover, and a slight addict to coffee.
What health issues do you live with and how long have you been dealing with the conditions?
I have systemic lupus erythematosus, rheumatoid arthritis, Sjogren's syndrome, fibromyalgia, polyneuropathy, osteoporosis, vasculitis, Raynaud's, epilepsy, and migraines. Those are just the major ones. I was diagnosed with migraines and epilepsy when I was 15 and autoimmune diseases such as RA, SLE, and Sjogren's in 2012. I had symptoms for many years prior but there was no diagnosis. By the timeline of symptoms, I have been dealing with the lupus symptoms for about 28 years and they have been getting progressively worse.
What do you find to be most frustrating right now?
I am utterly frustrated that doctors and nurses, and everyone in hospitals cannot catch a break. Right now, there should not be such a surge. We should not be seeing requests for morgue trailers, oxygen semi’s and parking garage structures being turned into hospital wards. We have the ability to be thwarting this, and yet people won’t take the necessary steps. One person dying is bad enough; in this latest wave over 95% are preventable in not only cases but deaths.
Can you share what it was like to have COVID?
COVID is not a hoax, it is no laughing matter. I had COVID for 13 weeks. I struggled to breathe and cough, not tasting or smelling was honestly the least of my problems. Having headaches for that long was the least of my problems. I now have COPD and pulmonary fibrosis because of this virus.
Is there anything else you would like to share?
I know many people have COVID fatigue. I do. I have been in my home since January of 2020. I don’t live in fear of this, but I do live in the reality of it. I did everything "right" and I still got it. I honestly just want out of my home one day, and that is more than the porch or self-made coffee shop I have designed to help my sanity. If there is one thing this does, maybe it gives a glimpse into a person’s life living with an autoimmune disease in a COVID-19 world. When disabled, you already struggle with isolation, COVID-19 has made it worse. I am part of society, I just want to do it safely out there again. Please, let’s do it together.
Have there been things you have learned along your lupus journey that you wish had been explained to you by a healthcare provider earlier?