My name is Dianne originally from Boston, MA, living in Texas.
Growing up I had seizures, hives, sun sensitivity and lots of headaches. I don’t have a lot of memories of my childhood except for being in the hospital long term.
It wasn’t until I was pregnant at 20 did I learn I had some other issues. I went from doctor to doctor, all told me “You may have lupus. But you definitely have antiphospholipid syndrome.” From that day on it was considered high risk for me to be pregnant. I was put on blood thinners and watched closely. Shortly after my son was born I developed a blood clot. It’s been over 20 years of weekly or monthly blood draws. And different doctors all making sure I am staying in a good range. Three children, two blood clots and many hospitalizations later I am finally told “You have lupus,” after more tests. It felt good to have a reason for all the worries, brain fog & weird pains. After some chemotherapy and daily medication I finally started to feel more normal again. Some days I wake up with new symptoms and still struggle with brain fog and migraines. My new normal isn’t the greatest but I do the best I can with what I’ve been given.
Hi! My name is Alex (or Al), I’m 19, and I use he/him pronouns. I have been fighting against progressive, chronic,...