Meghan B. - Diagnosed at age 30

Here’s how I see lupus. You’re a preschool teacher that gets called out of the classroom. The kids sit patiently on the rug, as they’ve been told to, but eventually there’s that one kid who realizes that they’re bored and gets up and goes rogue. Maybe they break into the playdough stash, or jump on the computers. Or just start drawing on walls.

Either way, they’re bored and restless and need something to do, and so they find something to do.

Ordinarily white blood cells are our friends, they get together and attack viruses and bacteria, and we even welcome them. Yay for white blood cells!

In my case, those white blood cells are the folks that don’t quite “get” when the party is over. They’re the ones sitting at the bar well after closing time, waiting for an after-party. And when none of that appears, those white blood cells make their own fun

Most recently, the cavities between the tibia and fibula in both knees fill with excess fluid, which is insanely painful. The cartilage is gone as a result of being a former equestrian and long-distance runner. I go in every two weeks to remove excess. Picture comically large syringes with the capacity to remove a quart of fluid.

I’ve tried every FDA-approved lupus-related medication, had chemotherapy 12 times, once developing a fever of 106.7 and required a breathing tube for 3 days. My sister happened to stop by just when they were removing the tube. I’m a social worker and she’s a corporate lawyer, so opposite personalities, and I threw up on her suede loafers.

I’ve also had a toxic reaction to a medication that dropped me from 140lbs to 86lbs and led to a 2-month hospitalization, a spinal biopsy without anesthesia, and relearning how to walk.

I’m in the running for CAR-T cell replacement therapy with final labs scheduled in a week. I won’t be allowed to walk ‘Joe” (I always call my IV pole Joe) around the aisles. I can, however, bring my yoga mat, although I’ve also been told that I won’t have the energy for Pilates or yoga. Which just means that I will, in fact, find energy. You don’t get as far as I have without being at least a little bit stubborn, and even more importantly, constantly having hope.

Oh, and if you visit, no suede shoes.