rebeccascott

Joy in the Time of COVID: In Which Calculated Risks Are Taken

As I’ve written before, my immune situation is iffy. Because MS causes my immune system to attack my nerves (hence the plethora of “MS gets on my nerves” merch), medications often interact with the immune system. My last one, Tysabri, prevented immune cells from crossing the blood-brain barrier, keeping my brain safe from new damage for five years. My current one, Ocrevus, suppresses B-cells, which play a role in the immune response. Studies show that because of this, folks on Ocrevus may not be forming antibodies post-vaccination. Other studies say, hey wait, don’t forget T cell response, which might be working fine! It’s all a frustrating mess, because while other folks are frolliclking about carefree post-vaccination, I’m doing constant cost-benefit calculations in my head.

A calculated risk

Y’all, I need me some joy. So I went to a Kesha concert last week with one of my favorite people, and I got a heaping scoop of joy. Glitter cannons! Snarly party anthems! Shirtless dancing boys! All in a concert venue teeming with vaccinated, mostly masked (barring the beer drinking) humans. Being of the less abled sort, I sat in a special section for folks like me with just four of us in the immediate vicinity. Barring the occasional queasy  look at the people dancing on the floor level, I felt giddy. Alive. Happy. And safe enough.

Rebecca and her friend smiling in their private seating area
So happy!

Panic after the disco

Last night I received a phone notification that I’d been in contact with someone that tested positive for COVID… on the date of the Kesha concert. I clicked through the DC public health website’s questionnaire. Nope, no symptoms. Sure, I’ve been a touch congested of late, but that’s allergies. Right? Surely it’s allergies. Oh good, this says there’s no need to quarantine or worry.

And yet.

I slept on it and awoke this morning to the news that a friend on Ocrevus has been feeling rotten and is doing tests to see what’s up. So far he’s negative (yay!) but his text sent my worry powers into overdrive. I have a work meeting in less than 2 weeks where I’ll see people I adore whom I haven’t seen since Feb 2020 AND people I adore whom I haven’t even met yet. There obviously is no good time to have COVID, but this would be an especially bad time for it.

In my morning haze I searched for local testing sites.

No availability
No availability
No availability

Okay, cool. Home test it is!

Out of stock
Out of stock
Out of stock

Shit.

I felt like beating my head against the kitchen counter, and then I found a small local pharmacy that had… appointments! Today!

So now I’m sitting here awaiting 3:10 when I can get swabbed and pricked and know where I stand.

I can and am trying to ground myself in gratitude that I feel fine, which is an excellent sign. I’m also grateful that this is encouraging me to get an antibody test, which I’ve been considering since joining the 3 shot club. Will the results be meaningful given all I said above about B-cells? I don’t know. But the antigen bit will at least put my mind at ease.

A mind at ease-ish

I scootered up to the testing window to have my nostrils violated and finger pricked. By the time I got home, an email awaited.

Antibody type? Elusive.

Yay! No COVID!

Shit. No antibodies.

Am I surprised? Well, no. But there was a tiny piece of me hoping against hope that I’d be the exception. That maybe a few B-cells were hiding out, ready to leap into action when they were needed.

So I continue to calculate risk and find my joy where I can, which is mostly outside while wearing a mask.

rebeccascott

Hey Jealousy: In Which I Try Not to Hate You for Various Reasons

Every day, every hour really,  another photo in my feeds. Someone grinning with their sleeve rolled up, showing off their Band-Aid or certificate or, in the cool states at least, an “I got vaccinated” sticker. It’s like early voting but instead of doing an inner ”Ba-booooo!” (victory cry coined by my high school class that, 25 years later, I’ve yet to shake), my emotional roller coaster begins.

Your parents are vaccinated! Yay! Mine too. What a relief!

Wait, where do they live? Maryland? Damn it! That’s so close.

What the f… oh, right, she has an underlying condition. Good for her.

School teacher. Great. Right on, right on. 

How old *is* he?

For you see, after waiting and wondering whether I could get vaccinated at all, the MS Society released their verdict in early February: all MSers not only could but should get the vaccine. FANTASTIC. Where do I sign up? Oh, DC is starting with folks 65+ in at-risk neighborhoods? That seems fair. I’ll just sign up for the alerts. And wait. And wait. Each text notification raised and then dashed my hopes until I stopped reading them. Then one day Neal told me that DC had announced plans to open vaccines to people with lowered immune systems. Glory hallelujah! 

I’m mildly immunosuppressed due to my disease modifying therapy (Ocrevus). It’s not the scariest of immunosuppressions, but it is cause for extra concern in these virulent times. So I’ve been cautious and am now hella eager to get some COVID antibodies up in here (up in here).

“You want the vaccine, Rebecca, and it’s available in DC… why are you even writing about this?” you may be thinking.

Well.

While I’m cleared to get the vaccine, the timing is tricky*. I can either complete my shots at least four weeks before my infusion or get my first jab twelve weeks after. March 1 was the first day I was eligible to even pursue an appointment. I’m due to be infused the first week of April. So again I wait.

We all know social media is a double edged sword. It makes us feel both connected and isolated. It allows us to celebrate friends’ victories… and hate them a little for their good fortune. And/or hate ourselves for being too lazy to do whatever they’ve done. Chronic illness intensifies this. It can be a struggle not to lean in to bitterness, especially when scrolling. Oh, you ran five miles today? Amazing! My phone says I managed 572 steps *and* I only fell once. Golly, those homemade croissants look delicious. My hands, which used to do amazing things in the kitchen, can barely manage a successful pancake flip. You dumbed into a COVID vaccination ahead of schedule? My dodgy immune system and I must wait until July.

Logically I know your getting the vaccine has no effect on me except to give me a pang of jealousy followed by guilt for begrudging anyone, especially someone I love, protection against a nasty virus. Similarly, your family dance party, your delectable eclairs, and your hiking getaway are things to be celebrated, but it’s often a toss-up whether I’ll grin or deepen the crease between my eyebrows. When I go into a guilt spiral, I remember the title of a terrific album by talented young (So very young! Damn them.) rockers The Regrettes– Feel Your Feelings Fool! All of these feelings are valid–joy, frustration, anger,  jealousy, guilt, hunger (it always sneaks in), and they deserve to be felt.

It’s also good to keep a little perspective simultaneously. Things are shitty, and I have a lot be thankful for. Everyone I know personally is healthy. I haven’t seen my parents in over a year, but they’re awaiting me in my childhood home when travel feels safe. It feels like there is real cause for hope in the US (thanks, grown ups in charge). Plus, I’m trapped in a condo with a handsome and charming man. 

I’m also the #1 Walk MS fundraiser in the DC area, which brings me lots of joy. Want to share a serotonin hit with me? Click here.

*So tricky that when I asked my neurologist what to do, she said, “Check with the MS Society.” I found this profoundly annoying. If you were part of an MS practice wouldn’t you release a statement or video summarizing recommendations for each medication? I was delighted to receive a video from my MS center last week… until watching it and discovering that it said, you guessed it, “Check with the MS Society!” Further reason to support this marvelous organization.