Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

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Calculated Risk

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This Tuesday I have my first in-person visit to Boston Medical Center in about a year. All my appointments since last winter have been via telemedicine or phone. My new rheumatologist told me when we spoke over the summer that he’s now trying to alternate virtual and face-to-face meetings with patients unless circumstances make an in-person visit too risky. Given the pandemic’s surge, I was expecting this one to be telemed once again, but not so.

Instead, I’ve received a series of texts and emails with a Covid questionnaire (all my answers to risk and exposure were ‘no’), instructions about coming alone (unless I was accompanying a child or a disabled or elderly patient), and to remember my insurance cards (of course).

What I don’t know is this:

Will they give me a new mask and require hand sanitizer when I arrive? I assume so. This is standard at every other medical practice that I visit. I hope they won’t prevent me from wearing my protective gloves.

Will there be a limit on number of people in the elevator? The Rheumatology Department is on the seventh floor, and the elevators in the medical building were always crowded in the Before Times.

How many people are scheduled for the waiting room at a time? Appointments often run late. There’s a big open corridor outside the office with large glass windows overlooking the BMC complex. The waiting room is shared with another department. Can I wait in the corridor instead of the waiting room? Will someone come to get me?

I will bring some cleaning supplies along in case I have to use the public restroom. At least on the 7th floor, the restroom doesn’t get too much traffic, but BMC is still a busy place, and I can’t take any chances.

Is it worth it to go in person? I could have requested a virtual appointment. But I actually want to see my rheumatologist again. We only met once, when my long-time physician, Dr. Robert Simms, was transitioning to retirement. It’s time to have a real visit. I really like and respect my new doc, and we need to get to know each other better.

So, I will take the calculated risk. Life is full of such decisions these days. Maybe, by the next appointment, I’ll have been vaccinated already. God willing.

Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com. Please view Privacy Policy here.

Image: Aziz Acharki

Added Advantage

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There are two basic reasons why it’s especially important, as the pandemic rages, to wear a face mask in public and indoor gatherings: it protects others from the possibility of your having Covid, and new evidence indicates that it protects you, too, from getting the deadly virus. Covid spreads by vaporized, exhaled droplets. Masks stop the spread.

As the weather gets colder here in Massachusetts, however, I’m discovering another plus for mask-wearing: it keeps my face warmer. Since I dislike the way it causes my glasses to steam up, I’m experimenting with leaving my glasses at home when I do my neighborhood stroll. I’m not so near-sided that this is a safety risk.

With some scarring on my lungs due to scleroderma, the mask can affect my breathing. So, if there is no one else around, I’ll tuck it under my nose so I can breathe more easily. Then if I meet someone along my route, I just pop it back in place.

I look forward to the day when we can dispense with masks. But even with the promise of powerful vaccines on the horizon, even knowing that those of us with compromised immune systems will likely be among the first to get the vaccine, I am resigned to the fact that we’ll still be wearing masks for many months to come. So I’ll focus on the added advantage of staying warm, and just deal.

As I was reminded recently, seat belts were considered an imposition and violation of civil liberties, too, when they became mandatory in all new U.S. vehicles in 1968. I can still vaguely recall how strange and restricting it felt when we had to begin using them. Now most wouldn’t think of driving without them, because seat belts save lives.

So do masks.

Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com. Please view Privacy Policy here.

Image: United Nations graphic created by Laura Makaltses

Respite

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To say this past week has been intense and stressful would be a vast understatement. We have a new President-Elect, but the months between now and Inauguration Day on January 20, 2021, promise to be a rocky ride. So, as a public service, I offer you some soothing images of our escape to Cape Cod over the weekend. Visiting the ocean and environs always calms my nerves. Hope this virtual visit does the same for you. Enjoy . . .

Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com. Please view Privacy Policy here.

As We Wait

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There’s a chill wind blowing as I write on Monday afternoon, and it feels more like January than the first week of November here in Massachusetts. We had six inches of snow last Friday, enough to pull down some tree branches that are still in leaf. But we made the most of it, and built a snowman. It’s still barely standing.

It was Al’s 70th birthday on Halloween, the kind of milestone you want to mark with a big bash. Instead, I made him a half-hour video montage with tributes from family and old-time friends, we had a Zoom family party, and an elegant take-out meal plus a delicious cake with chocolate mousse and raspberry preserve filling. The day felt truly festive, despite pandemic restrictions. Al, being Al, delivered candy treats to all the neighbors because there was no trick-or-treating in our fair city this year.

On Sunday, we at long last had our lower roofs repaired, a project that had been stalled for two months, first by weather, then by our Covid scare. No more leaks in my office every time it rains, or in the kitchen around the very old skylights. The new ones are solar-powered and close automatically when it rains, if we forget. I’m grateful this is finally done and we’re ready for winter.

The sky is a brilliant blue, and the sun is shining.

Whoever wins our national election, I must believe that we’ll find our way through. We have many searing problems to solve, a pandemic to overcome, far too much fear and misunderstanding. But there is also a wellspring of love and good will in this country. I’m praying for our better angels to prevail, for the ebb and flow of daily life to be all that’s remarkable, once again.

If you have not yet voted, please do so before the polls close. Be safe, stay sane, hug your loved ones, be kind to your neighbors. We won’t know the answer for a few days, or perhaps longer, until all the ballots are counted. That’s okay. Every vote matters.

Peace.

Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com. Please view Privacy Policy here.

Image: Jennifer Griffin

Flu Shot

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I got my flu shot last Thursday morning. Unlike previous years, when my health care provider would offer walk-in “flu clinics” that involved checking in, confirming that my doc was part of the practice, then quickly moving through the line to an exam room, getting the shot, and leaving, in Covid Time I had to make an appointment.

I was greeted by a car valet who squeezed sanitizer onto my palm, then the welcome staff who handed me a paper mask (can’t wear your own) with a pair of tongs. After checking in at six feet from the counter, I proceeded to the elevator, where another patient pushed the buttons for me (I would have used my elbow instead), then on to the adult medicine waiting room and took a seat.

To my dismay, I realized I’d left my phone at home—big mistake for waiting rooms—but, fortunately, the nurse came out within a few minutes to invite me to the exam room. The rest went as usual, and I barely felt the shot (unlike a few years ago, when the nurse hit a bone near my shoulder with the needle, big ouch). All done within about the same amount of time as a flu clinic.

Since I’m over 65, I got the super flu shot, and by that afternoon, I was starting to feel a bit out of it. My arm didn’t really hurt, but I was just tired and woozy. Watching the last presidential debate did not help. Sleep was most welcome, and by the next morning, I felt like myself again.

All this made me wonder: how bad is the flu this year? I don’t usually have that kind of a reaction. And, how awful would it be to get it in Covid Time, let alone get Covid? Fortunately, at least as far as the seasonal flu goes, I can just sit back and safely speculate—and urge you, if you haven’t done so already, to get your flu shot now.

We are blessed to have easy access to a flu vaccine. A hundred years ago, people didn’t have that option. The great influenza pandemic of 1918-1920 infected an estimated 500,000,000 people worldwide. Of those, about 50,000,000 died—including 675,000 individuals here in the U.S.

In the past eight months, at least 225,000 Americans have died from COVID-19. According to the best estimates, we won’t have access to a widely distributed vaccine until at least next summer. By that time, if we continue on our current path with mixed response to mask wearing and social distancing, the nonpartisan Institute for Health Metrics and Evaluation at the University of Washington projects that we will have lost nearly 383,500 of our fellow citizens by January 31, 2021. If everyone finally concedes to wear masks, the projection is still very grim, but lower, 321,500 deaths. And if we go the way of easing restrictions, the total jumps to a projected 480,000 dead—well on the way to the death toll of a century ago.

Just writing these numbers is mind-boggling. Covid cases are spiking across the U.S. as I write. In regions that are surging, hospitals are overwhelmed and running out of ICU beds. We are heading into a very dark winter. Even with best practices, because of inconsistent public health practices nationwide, we may well lose another 100,000 fellow citizens in just a few months.

Nonetheless, given that a safe and reliable Covid vaccine is still many months away, if everyone would just wear a mask, we could save about 50,000 American lives between now and February. Think about it. 50,000 lives.

Our national election is truly a life-or-death decision this year. Please wear a mask. Vote safely. Vote.

And when that effective, scientifically-proven Covid vaccine is finally available, get in line. The safety of all depends on each of us.

Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com. Please view Privacy Policy here.

Image: “Boston Red Cross volunteers assembled gauze influenza masks for use at hard-hit, Camp Devens in Massachusetts,” 1918, Centers for Disease Control.