September 7th is Still’s Awareness Day. Despite being a nurse for the last couple of decades, I knew very little about this disease that I only thought consisted of juvenile arthritis. I share my story every year on this day to help bring more awareness. In fall of 2020 I began randomly having sore throat, body aches, extreme fatigue, brain fog, and random fevers. I was tested three times for strep throat and around 11 times for Covid. I was started on antidepressants because I was told it was stress. I was not super concerned.

To be honest, since my teenage years I had had bouts of illness where I developed a rash high fevers all of these other symptoms. I was always told that my body just had a virus and I reacted strongly to it. This time would be different; fast forward to February 2021. Well, it work one day I began to feel my symptoms much more extreme. I ran over and grabbed a rapid Covid test, which was negative. I tried to continue the workday, but began to feel like I was going to pass out and was having vision problems finally when I got a fever I left work.

Over the next several days, my symptoms would be much better in the morning where I thought I was on the mend. By early evening, my fevers would reach up to 105°. My family tried to convince me to go to the emergency room, but I had convinced myself it was simply the flu. The fifth day I woke up in the morning and was unable to walk. Still, the stubborn nurse that I am, I had my mother bring me to urgent care. Because it was during Covid, they refused to see me in the actual urgent care until I had a negative Covid test next-door. While waiting for the Covid test, I felt impending doom. I’ve always been taught when a patient has that feeling you listen to them. I called my mother back and she brought me to the emergency room. Luckily I had friends there who rushed me immediately back to a room. Now I started to develop a rash and had trouble breathing. Showed pneumonia, inflammation in my spleen and liver. My lab work was awful. I was Covid tested again! My negative result the ER physician refused to believe that this was not Covid. She tried to have me admitted to the designated Covid unit. Thank God, the attending physician for that unit refused to accept Me with a negative Covid test until he examined me. he came down actually listen to me and immediately told everyone I needed to be transferred to a higher level of care.

I was placed in critical care had a new hospital. It was touching go throughout the night. Luckily the next day a resident diagnosed me with activation syndrome related to Still’s disease. I spent the next week in critical care on high doses of steroids. I was discharged home and began the fight to get insurance approval for a biologic medication. I did get that medication took it for the next year and a half.

For the last year and a half. I have been basically in remission since this last flare. I still have chronic pain and inflammation. I do feels like I am walking through water and it is extremely physically and emotionally exhausting. I think God for my support system. For realizing that a sugar and starch free diet makes me feel better. I am so happy that I have built the resilience to just keep pushing forward.

 Despite all this, I still become petrified every time I think it’s happening again. Every sore throat. Every time I have body aches. Every fever. It was both a blessing and a curse to fight a disease and silence. I don’t look sick. I don’t want to sound like I am whining, and I do not want to become comfortable seeking constant pats on the back. So I don’t complain.

But I cannot say how grateful I am for my community of other warriors. From the first day that I found the Facebook forums until now. People who get me. People who understand. Helping those that are scared and just finding out they have this. I am so grateful for them all.

Attached are two pictures. One of me on about day three of being in the hospital. When I could finally move around a little. The next is the picture I sent my children because they were afraid I was never coming home. I wanted to show them how much better I was doing.