Windy T. - Diagnosed at age 30

I immediately started to have symptoms in 2002. I worked out after having my fourth child. I became really sore. I thought I was sore from exercising so I continued to work out thinking it would help. I thought I was sore because I hadn't worked in a while. I continued to remain sore for a few years before I was finally diagnosed. I saw an orthopedic doctor rheumatologist, not who I see now, chiropractor, had blocks but was still sore. I got terribly ill as if I had a stroke.

Doctors, of course, left me to fend for myself because they did not know how to treat me. The doctor saw in a microscope how my immune system was attacking my good tissue instead of the bad ones. He thought it was amusing and I am sitting in an E.R. with my face drawn up and in severe pain. I ended up months later with sinus surgery. Later, I was referred to another rheumatologist, who I currently see, who sent my blood work off to another state and who diagnosed me with lupus. When he started treatment, I was not as sore.

January 2021 I was in close proximity of someone who had Covid. I was told Friday and that Monday I became extremely ill. I became severely ill which caused a lupus flare. I was then diagnosed with pulmonary fibrosis, interstitial lung disease, Hashimoto, R. A., and sinus tachycardia.

When I was released from the hospital, I had occupational therapy, physical therapy, and a nurse, who administered my lupus medication through intravenously. All of this is in my home. I had to learn how to talk, walk, breathe, and other scary things. I thought this was it for me because my pulmonologist explained that my lung disease got worse.

In December 2023, I went into chronic respiratory failure. In my right lung, the scarring has increased. I am not sure if or when the scarring gets worse. None of the doctors I saw knew about or knew how to treat lupus. My lungs are the organ lupus affected. I want to advocate so doctors can be made aware of symptoms instead of patients not being treated in a timely manner or instead of being treated too late. Also, to advocate for others who can't advocate for themselves.