“My husband is a remarkable caregiver. He knows how to talk to ER doctors and advocate for Ladybug if she has a hospital stay. Yet as I watched them pull off in the SUV, I had what felt like empty energy. I was anxious because I wasn’t going.
“You seem unsettled,” he said as I cleaned up and organized a space in our house. I had to do something with my excess energy. I was buying time before returning to campus to teach my next class, and if something went wrong, the school would know to call him instead of me.
“I don’t know what to do when I’m not solely responsible for all of her medical stuff,” I finally admitted.
Even though she was diagnosed in 2021, I’ve taken Ladybug to her appointments since she was 4 years old. I’ve memorized her medical history, administered her meds, stayed up with her during bad nights, and become her “roommate” during hospital stays. The act of caregiving became my security blanket, and the title became my identity.
But now, as a college professor, I’ve found that sharing this heavy load of caregiving with my husband, which would seem ideal to some, has made me question who I am now.”
Anakinra is expensive — on average, private health plans pay about $4,000 a month for it — so we needed to get approval before it would be covered....