I like this play on words. Body of work describes my creative writing life, but body of worth reminds me that, though I may have multiple sclerosis, I’m still just as functional as the next person, even if I may need to do things differently from time to time. Which may also describe my creative writing life, truth be told!
Had my latest MRI yesterday.
When the radiology techs prepped me for my dunk into the Tesla 3 tube, they asked if I’d had an MRI before. I could only laugh and say, “more than I can count.” Welcome to MS reality. I also told them to make sure to support my neck because I would definitely fall asleep.
If it weren’t for the pandemic, I would have found this to be yet another normal day. But it’s different out there, in ways you can’t ignore.
What a difference a pandemic makes
As soon as you go into any of the buildings at the hospital (in my case, the Seattle Virginia Mason campus), you’re screened with a slew of questions to ensure you’re not likely a COVID-19 carrier. Then they give you a hand-marked badge and send you to the appropriate queue for checking in.
Social distance lines, barriers, and fewer exchanges
Like we find at the grocery store, floor markers guide people in line so they stay six feet apart.
At the check-in counter, nothing changes hands (no insurance, credit, or identification cards).
There’s also a plexiglass barrier separating you from the clerk.
Only four people may step inside an elevator, and the same floor markers from the lobby mark the four corners of the elevator. I use my elbow to select buttons.
In the waiting room
Most of these same protocols are repeated inside various departmental spaces. The cordons, spacing, plexiglass barriers, and even the pens I use to fill out paperwork (selected from the disinfected cup, not the used cup) are all new variations on the old system. Variations I’m happy about.
Also, there are only half the chairs in the waiting area, spaced out by six feet.
Getting ready for my MRI
Most of these protocols are the same, except that everyone’s super protected. I’m now convinced that I’m being silly by not going in for my usual dentist and other appointments.
Hospitals and healthcare workers have the PPE thing very well handled, with gloves and masks across the board and, in some cases, additional scrub suits and face shields. There’s someone cleaning something everywhere you look.
One thing that I didn’t even think about: my cloth mask. Right before they left the room to install my swathed body into the MRI scanner, one of the techs asked, “What about the mask?”
I’d worn (and kept on) one of my tie-on masks with the wire nosepiece. Of course, it had to go, the wire is made of metal. But I thought it funny that we’re now so used to wearing masks and seeing others wear masks that we might even forget that there’s metal inside our masks. Depending upon the type you wear, this is most certainly a possibility.
After that, I did, in fact, fall asleep.
Meeting with the doctor
So there were no warm handshakes with my neurologist, but that was fine. He donned a mask and goggles and we talked about my results but only after we talked a bit about having MS in the time of COVID-19.
I stopped taking my disease-modifying therapy (DMT) a little more than a year ago as an experiment. I’d had ongoing health problems that I suspected were medication side effects. Meanwhile, my MS seemed to stay clearly in remission, with little exacerbations or symptoms occurring only when I’m physically or mentally fatigued.
Guinea pig detective games
Once I stopped taking the medication, the health problems I linked to taking the drugs also went away. So my doctors (mine’s a two-neuro “tag team”) just said, “Call us with any concerns; otherwise, we’ll see you this summer.”
This isn’t altogether extraordinary. Let’s just say, people with chronic illness must often play these little guinea pig detective games.
My experiment was to see if I could maintain remission without using this (or any) DMT. The goal? To eliminate the side effects. Not only were they uncomfortable but they’d had a considerable impact on my daily life.
(Let’s just say I really couldn’t go anywhere without a bathroom nearby… which makes it impossible to hike, kayak, walk on the beach or do anything that took me away from civilization. Not great if you derive a lot of pleasure out of camping and other outdoor activities.)
Meanwhile, I’ve continued to take a “cocktail” of supplements twice daily that includes vitamin D and some other nutritionals with neuroprotective qualities.
I also did some experiments with this over the summer to see if I would notice a difference when I didn’t take them (and boy-howdy, did I ever… I was quite surprised by how effective these cocktails are in helping me manage my symptoms).
A quiet MS story
It turns out that not only is there no new lesion load per my new MRI scans, but my neurologist described me as having a “quiet MS story,” which is to say, I’m good to go without the heavy-duty medications and their troubling side effects.
As for being high risk for COVID-19, he relieved me of those fears, as well. My immune system, while on the DMT, becomes dangerously impotent in the same way that the immune system of a person with AIDS no longer works.
However, since I’m not taking a DMT, my immune system has bounced back to normal levels (as shown by my blood tests). This means I’m officially no longer a high-risk candidate.
Taken off the injured list!
That news felt good. It felt like an athlete being taken off the injured list!
It’s not like I can do much to celebrate, however; I’m still avoiding restaurants and bars and forgoing visits from loved ones to our new place. But I appreciate the peace of mind that comes with knowing that if I do get COVID-19, I have an actual fighting chance thanks to a restored immune system that a person with high-risk conditions doesn’t have. That’s no small thing.
Hey, these days, I’ll take my wins wherever I can find them.
Feeling safe in unsafe times
Ultimately, any anxiety I felt about going to the hospital for my annual MRI was quickly dispelled by a feeling of confidence that I was in a safe place.
Safer, in fact, than going into Safeway for groceries (which I still don’t feel comfortable doing, but have started to do on occasion instead of paying for doorstep delivery).
I go in for an annual checkup in a year, and if I don’t have any changes, then I may be able to skip the annual MRI and just keep doing what I’m doing.
It seems hard to believe that a few years ago I was unable to read or speak in complete sentences, and today I’m sailing through a pandemic with a handful of minor symptoms that I’ve more or less become used to.
(Okay, I could do without the constant ear ringing, but if that’s the price of remission, I’ll pay it.)
Just goes to show you… you can just never know what the future holds.