I guest-blogged this article for the National MS Society’s blog, MS Connections.
I hadn’t left my house in weeks. Out of an abundance of caution, I had self-quarantined before it became mandatory by my state.
Usually, I would have had my “Infusion Day bag” with me: phone charger, sweater and lunch. But this time, my infusion would be different than the last five times.
They changed the procedures – no one was allowed to be with me. No outside food. You had to switch from your outside mask you wore into the building into a hospital-grade mask instead. They were staggering patient arrival times to help keep the number of patients at the infusion center low. Infusions would now only be in the morning.
I had debated even coming to get my Ocrevus infusion in the time of COVID-19. I spoke with my neurologist, and we discussed the pros and cons.
Earlier in March, he had had me cancel two trips because it was early on in the pandemic and no one knew what was to come. When we discussed my infusion, we decided that based on my multiple sclerosis history, we should probably be more concerned with my MS than with me getting COVID-19, especially since I hadn’t been leaving my house.
My MS always plays nice… until it suddenly doesn’t. Then we need to switch to a more aggressive treatment. I’ve been on Ocrevus for two and a half years, and I really like it as far as my treatment options go.
As I went down the elevator, I found my heart beating a bit faster. Other than my husband and two kids, these nurses were going to be the first people I had interacted with in-person in six weeks. I was also worried about the coronavirus. Was it lurking somewhere in the infusion center? What if someone had coughed in the elevator before I got in? Didn’t they also say it may live on surfaces? My heart started pounding more.
I got set up in my private room. I gave my nurse the sign my kids had made the night before — thanking healthcare workers. They gushed over it and hung it up.
The picture my children drew for healthcare workers
They took my blood pressure, and it was sky high! Guess I was more nervous than I though. We waited an hour for it to come down naturally, with me taking deep breaths with my eyes closed. Still, he ended up having to call my neuro for some emergency pills to bring my blood pressure down so we could safely start my infusion. Other than that, it was uneventful. I mostly sleep when I get my infusion. This time, I wondered if the new procedures will still be in place when I come back in October.
The day after, I always have a killer headache. Typically, I would have the house to myself with the kids at school and my husband at work. This time they were all home. I stayed in bed all day watching TV while they all did the same elsewhere in the house.
My kids are 9 and 10. They can pretty much entertain themselves these days, but if you’re someone with small kids or don’t have someone with you to help distract your kids, please cut yourself some slack while you rest.
Let them zone out on their third movie that day. They’re on their fifth hour of YouTube? Fantastic! Order take out for dinner, too. Whatever you need to do to get through this insane time that is COVID-19, do it. We’re all just trying to make it through the day right now.
IMAGE: A (Sarah) mandatory “Mirrored Elevator” Selfie.