The date crept creeping closer and closer and my anxiety kept getting worse and worse.
It was the day I was scheduled to have my next infliximab (Remicade) infusion to treat my rheumatoid arthritis (RA), and I desperately didn’t want to go. I had been sheltering in place at home since March 9, on the earlier side of when the coronavirus reared its ugly head in the U.S. As an immunosuppressed RA patient, the minute I’d heard about entire cities in Italy under quarantine lockdown, I took it very seriously. I went to Costco long before everyone else and got toilet paper, flour, and meat, then voluntarily shut myself in from the world before it was mandated by my governor in California.
I didn’t need to leave the house to do anything other than walk my dogs. In our area of Palm Springs, grocery delivery was readily available (albeit with a five-day wait). I could wait five days. I could wait a hundred. I had enough supplies to last a lifetime. I could stay in my house forever, if only I didn’t have to go to this darn infusion.
Did I really have to go? Was it even safe to go? An unscientific poll of everyone in my Facebook RA groups who got infusions revealed that 99 percent of them were terrified to go, too. Thing is, I wasn’t scared of the actual infusion. I implicitly trusted my rheumatologist, Gary Feldman of Pacific Arthritis in LA, to keep me safe. I trusted and adored my nurses Arliz and Selma to do the actual infusion and take my blood.
My biggest issue and fear was that I did not trust that the other patients who would also be at my infusion had been as diligent as I had about social distancing, hand washing, and mask wearing. Had they been going to the store? Visited with friends and relatives? Touched their faces every five seconds? I’d be sitting in a smallish room with them and their respiratory droplets, and I’d have no way of knowing.
The Stress of Making the Decision
I didn’t want to go.
I scoured the Internet for information that would release me from my impending infusion, but I kept coming up with the same answer. The answer I did not want to hear: Do not skip your infusion. Go to your infusion, unless you actually have COVID-19.
Here were my options:
- Leave the house and put myself at risk to get coronavirus
- Don’t leave the house, get a flare, and be so miserably in pain that life might not be worth living anyway.
I didn’t like my options. I didn’t know what to do.
After being isolated at home for weeks, I’d felt sure and secure that I did not have the virus. But as my infusion date approached, I worried about my safety again. I got panic attacks that came out of nowhere, at random times of the day. One even woke me up in the middle of the night.
To soothe my anxiety, I downloaded the Calm app, even though it was like $60 for a year’s subscription. Every night before bed, to relax, I listened to my favorite narrator Tamara Levitt’s “Daily Calm,” then I put on a lovely bedtime story narrated by some random famous person about serene, happy things like penguins in Antarctica. It conked me out within minutes and helped me sleep soundly through the night.
Another thing I did to ease my anxiety was … I finally made a decision. I was going to my infusion. No ifs, ands, or buts. It was the medically appropriate thing to do, according to every expert I’d come across. Plus, I thought about two of my close friends who were battling cancer and getting chemo. I realized that if they were brave enough to show up to their infusions, then I should be brave enough to go to mine. They inspired my final decision.
Once I made that decision, preparing for the “big day” also helped lessen my anxiety.
I called my doctor’s office to ask what new protocols they had put in place since the onset of COVID-19. I was told to bring a mask and gloves (if I had them) and sit in my car until a nurse came to get me. The front door would be locked and nobody was allowed to sit in the waiting room. She would take my temperature and assess potential exposure before I entered the building. I would meet with Dr. Feldman in a bigger room where we could socially distance ourselves. Then I would get the infusion. The infusion suite usually had up to six patients in chairs, but now there would be no more than three patients and they’d sanitize after each one. I liked what I heard. It was a bit of a relief.
The Big Day
I woke up the morning of my infusion with that feeling you used to get as a kid on Christmas morning. I kind of couldn’t wait (to get it over with). It takes me two hours to drive to LA, so I made a special quarantine mix and sang 80s songs like “Sister Christian” and “Arthur’s Theme” at the top of my lungs the whole way. I wanted to go back to a time in my life that was carefree and not completely surreal and batshit crazy. It also felt amazing to be completely alone (I live with my mom) for the first time in weeks.
When I got to my doctor’s office, it went exactly as they said it would. I waited in my car, wearing a mask, gloves, and onion-chopping goggles I found in a kitchen drawer for good measure, then was escorted inside after having my temperature taken at the door.
“Is it normal?” I asked.
It was a rhetorical question. I’d taken my temperature about 672 times since this whole ordeal started. Always normal.
When I saw Dr. Feldman from 20 feet away in a bigger examining room than normal, we both smiled at each other, like, “Can you believe this shit?” I could tell he was smiling even with his mask on, because I could still see the eye crinkles. It actually felt so great to see him in the midst of all this insanity. It made me feel safer.
He was fine. I was fine. We were going to be fine.
Our appointment was brief, shorter than normal. After we chatted for a bit about my pain level (low), he updated me on the latest info and stats about rheumatoid arthritis and coronavirus, then I went into the infusion room. There were two other patients in there, both wearing masks and sitting as far away from each other as possible. I sat about 15 feet away from another lady who was wearing a fancy N95 mask with a ventilator. My nurse Arliz, in mask, gloves, and hairnet, got me ready for the infusion. I noticed every time she walked away from one of the patients, she slathered her hands in sanitizer.
I watched Property Brothers on HGTV like I always do and we chatted about, what else, coronavirus. Arliz told me that unfortunately many of her patients had canceled their infusions.
“We’ve had a combination of self-cancelations and requests to reschedule appointments,” she said. “Many of the patients do not want to leave their home for fear of exposure to COVID-19 and the potential to get sick. Most of the patients feel they are more susceptible to COVID-19 due to having a ‘compromised immune system’ with their condition or diagnosis plus treatment and/or their age.”
I told her I struggled with showing up and she reminded me why it was important that I did show up, on time on my scheduled date.
“We do not have the data that our patients are any more susceptible to COVID-19 than someone who doesn’t have the same diagnosis/treatment,” Arliz said. “So we recommend patients stay on their treatment regimen so that they remain stable and avoid a flare-up of their condition. A delay in treatment may cause a patient to have a flare up that may or may not be manageable with the same treatment regimen. We want to avoid having to provide additional therapies to our patients that may further compromise their immune system making them more susceptible to increased infections or hospitalizations.”
It took an hour and half for my bag of Remicade to be piped into my body. It was mildly hot and stuffy and uncomfortable wearing a mask the entire time but I wasn’t about to complain, when my nurses were wearing their masks all day long, for us. Heroes.
That was it. I was done. It was a lot less dramatic than I built up in my head. I’d been too nervous to eat beforehand so I celebrated with a trip to the In-N-Out drive-thru line. I deserved a Double-Double with onions, I told myself.
Then after I wolfed down my food like an animal, I felt really dumb and ashamed. Why would I expose myself like that when I’ve been so careful? But the drive-thru peeps were wearing masks and gloves and it seemed safe and I was starving. I drove home with indigestion, burping loudly as I belted out “Eyes Without a Face” by Billy Idol.
Waiting and Seeing
It’s been a couple days now since my infusion and I feel decent. I feel about as good as I usually do in the few days after my infusion. Fatigued. A little flu-ish. The inside of my body feels like a furnace. A few times I’ve felt hot enough to take my temperature (it’s always normal) and I kind of have a scratchy throat, but that happens to me when I have anxiety, too. So it’s probably anxiety and not coronavirus, I remind myself 12 times a day.
I know me, and that means I won’t relax completely until I make it two weeks from my infusion without a coronavirus diagnosis. Until then, I’ll stay home and log onto Calm as much as humanly possible, so I can listen to LeBron James or Matthew McConaughey purr about yurts or wild ponies or something.
In the meantime, get your infusion.
Get Free Coronavirus Support for Chronic Illness Patients
Join the Global Healthy Living Foundation’s free COVID-19 Support Program for chronic illness patients and their families. We will be providing updated information, community support, and other resources tailored specifically to your health and safety. Join now.