Disaster Responder Living with Lupus

My husband and I have been disaster responders for years. I've been deployed to fires, floods, hurricanes (most recently Hurricane Harvey) and locally on a continuous basis to structure or grassland fires, fatality accidents and search & rescue events. So, I was a bit shocked the day that we were at a structure fire in early June and one of our EMS responders called me aside and said, "Are you okay? I'm about ready to put YOU in the box (ambulance). You are red as a beet and you are stumbling. Did you even realize that?"

Fatigue, pain, and rash

I had begun to be totally wiped out, after responses. I hurt all over, couldn't get rehydrated as I always had and the fatigue was relentless. That particular day, she basically threw me off the scene and cautioned that I probably shouldn't be driving. We made it home, with my hubby at the wheel. But, I was nauseous and after a quick shower, I fell in bed and slept for for almost 24 hours. I was so fatigued that I didn't even want to get up to go to the restroom, so I wouldn't drink water, for awhile. I was beginning to say, "maybe I'm just getting too old to do this".

Not too long after that, I had an eye appointment. My doctor had asked me before, if I needed to talk to my PCP about my "Rosacea". This time, he said, "WHEN are you going to see your doctor about that rash? You know it may be having an effect on your blepharitis." So, almost out of irritation, I left there and went straight to my PCP's office. She looked and listened and took blood... a couple of days later, they called and said, your ANA is positive. We're referring you to a rheumatologist.... and the saga began.

Yes, it was Lupus SLE.

Remembering early symptoms

As I looked back, I wondered how I had missed the signs. My maternal grandmother had died of Lupus complications. At the time, I didn't know much about Lupus, but knew she'd had to give up her fishing that she loved so much, because "the sun made her sick". What? Then my mom had been tested, but the doctor told her he wasn't going to "stick her with the Lupus label".

The heat and sun sensitivity, fatigue, stress, headaches, common rash, difficulty sleeping... all things I had heard come out of their mouths, I now understood. So, I now try to educate those around me, so they "get it". My life has changed. It will continue to change. I can't do some of the things I love, including disaster response. But, I am trying to learn to make the very best of the pleasures in life that I can still safely enjoy. But, I will always be grateful to my EMS friend. She may well have saved my life!

Interested in sharing your own diagnosis story, treatment experience, or another aspect of living with lupus?