The Never-Ending Struggle
Last updated: February 2023
I was diagnosed in 1998, but managed well and had few flares. As time has gone on, it has gotten worse.
Lupus has taken too much
It took my nursing job, my mobility (in a wheelchair now), and my happiness. I'm thankful to not have any major organ involvement yet, although the brain fog is nerve-wracking. As time has gone on I have more symptoms. I seem to "collect" all of the things that relatively few people with lupus get, like a huge nasal septal defect, panniculitis, and a major reaction to mosquito bites (not allergy). There are others, but I don't want to bore y'all. I've had numerous infections and been in septic shock 4 or 5 times. Thankfully, I'm still here.
I just wish they'd find a cure so I can enjoy life again. Lupus has taken too much from my life.
How are you most likely to respond when someone offers you unsolicited advice about your lupus?