Bringing It Home

This month’s been a rollercoaster. I’ve been struggling with burnout and depression. Our only car shit the bed. Mike and I both got COVID (his first time, my second). Our finances, which have been limping along for a while now, took a major fall. I had to cancel my one and only 2022 appearance (RomantiConn). We both made a full recovery (I have some residual issues, but nothing major). Mike did his first tattoo on someone other than himself: me! I finally started writing again. I got cleared by my rheumatologist to resume my treatments. And I’ve officially graduated—he and his office are setting me up to do weekly Benlysta injections at home rather than monthly infusions!

I can’t believe all of that happened in one month. That’s usually my typical year. 

I’m just grateful that neither Mike nor I had any COVID complications.

I can’t wait to start doing Benlysta at home. My rheumatologist wanted me to resume infusions ASAP, but there’s no way I can get out to the infusion center. I told him about my car problems and he asked if I’d be okay with switching to weekly injections. I’ve known for a while that method was available, but I kinda liked going to the infusion center. They have snacks and cable; I binged a lot of HGTV from behind my eyelids.

I’m so ready to bring Benlysta home, though. It’ll give me some autonomy back; infusions aren’t easy and they pretty much take up your whole day.  When I first found out I was going to be getting biologic infusions, I pictured Mike sitting beside me for moral support. But the infusion center hasn’t allowed visitors since the pandemic started, so I’ve been doing them alone from day one. I also pictured moral support from friends and family, the way people rally around someone getting chemo: posters, cards, blankets, warm hats. Instead, some people in my life became even more distant. Rather than be bitter, I’m proud of myself. This flare has been beyond anything I ever imagined could happen with UCTD. (Now I know better, and I know what to watch for.) I made it through, and I rebuilt myself to be stronger than ever before.

Before I got sick, I used to play softball. I hit exactly one home run, during a practice. I was still crazy proud of myself. For a brief moment, I was in the zone. I hit that ball when I usually swung and missed. I ran from base to base with my whole team whooping and cheering. “Bring it home,” Coach yelled, and I did.

This kind of feels like that.