Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Hearing

A Tale of Two Visits

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I had two visits with my Boston Medical Center physicians last week—one, in person with my new rheumatologist, and a second, via video chat, with my cardiologist. Both had been scheduled months ago, but it afforded me an interesting opportunity to compare the two modes of doctor’s appointments.

My in-person visit went well. I was very glad to see my doc and have a good long conversation with him. He gave me plenty of time to discuss my health and any concerns, and was able to answer all my questions. It was more of a schmooze than a strict, all-business visit, and I think being there helped to make that possible. Having that time—we spoke for about an hour, with only a brief interruption—made the commute worth it.

The downside was just the stress of being there, with all the Covid concerns. First off, I had forgotten that the parking garage requires you to touch a button to get your parking ticket. I did this with gloves on, but how many people don’t? It’s a virus magnet.

There was the inevitable challenge of door handles, elevator buttons, and using a public restroom. I got past all those hurdles with extra vigilance and disposable gloves, which I kept on until I went into the exam room. I used plenty of hand sanitizer, with and without gloves. The medical center checked temps and symptoms upon entry, handed out masks with a pair of forceps, and limited occupancy of elevators and waiting rooms. It simply was not as crowded as usual. And the big test, one week out, I have no Covid symptoms, thank goodness. So, that’s a huge relief.

On Friday, I spent a half-hour on a video chat with my cardiologist, whom I’ve been seeing for decades. The only drawback was a slight hiccup in the video signal that almost kicked us off to a phone call, but fortunately, the signal stabilized. We had a very thorough conversation, which was as good as if I had seen him in person. And no stress of driving or dealing with the public space.

So, given the choice—seeing as I’ve now had a good personal visit with my new rheumatologist and made a real connection with him—I think I’d prefer sticking with telehealth until I’ve had the vaccine and am in the safe zone. The stress of Covid vigilance is intense for me. My blood pressure at BMC was much higher than normal, and that’s probably the reason (back to normal at home).

And it sure beats traffic.

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: Jason Dent

Thankfully

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Thanksgiving last Thursday was for us, as for so many, a shadow of celebrations past. But it was still lovely and meaningful, in its own way. Our eldest daughter, who also lives here in Massachusetts, was able to join us, even as our youngest had to stay at home out-of-state. Still, we enjoyed an extended family Zoom and watching a movie together-while-apart in the evening. No substitute for in-person, but I’m grateful that we all stayed safe. I cooked a vegetarian, gluten-free feast, with sous chef assistance from our daughter, including this excellent recipe from The New York Times for “Roasted Cauliflower Gratin with Tomatoes and Goat Cheese,” which I highly recommend.

The Times on Thanksgiving also featured a wonderful compilation of reader contributions of six-word gratitudes. Here are ten of my own:

COVID-19 vaccines: Light at tunnel’s end.

All still Corona-free. Knock on wood.

Okay, otherwise, with no digital infections.

Supermarket cashiers risking health for us.

Ample food. Loving family. Roof overhead.

Longer days in just three weeks.

Virtual, imperfect, but meaningful Zoom togetherness.

Good neighbors who wave behind masks.

Local election officials who defend democracy.

You, Dear Reader, for being here.

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: Adam Nieścioruk

Constancy

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My mother used to have a saying, “This, too, shall pass.” I suppose it calmed me when I was a child, but as a teen and young adult, it used to drive me crazy. As is the way with mothers and daughters, I took this as her default dismissal that she didn’t take my feelings seriously. Looking back, I suspect that on some occasions, she was speaking from the wisdom of experience, and on others, she just couldn’t deal with my angst du jour, legit or not.

Lately, however, those words have resurfaced in my mind’s echo chamber. As the pandemic surges and the infection rate rises exponentially, as our nation roils in the election’s aftermath, I have found some comfort in my mother’s saying. After all, she lived through Weimar Germany and the rise of Hitler, transplantation to a new nation with a different language and culture, World War II, the McCarthy era, the Cuban Missile Crisis, civic disruption in the ’60s, Watergate . . . the list goes on.

We were most fortunate, in the midst of all that 20th century strife, to enjoy a safe and comfortable middle class life. And I am very grateful, now, to have the luxury of being able to reflect on our nation’s turmoil without experiencing a major disruption of illness or unemployment or the risks of financial ruin in my own family. This is not the case for all too many of my fellow citizens, which is both tragic and utterly unacceptable.

Nonetheless, especially when I go outside, I find reassurance in the natural rhythms of the world, that there are constants that continue to ground us all. The trees are mostly bare, now, in my neighborhood, their brown and crumbled leaves raked into huge mounds that line our streets. The air is crisp; the light, November stark. It is a comfort, even as the days grow short again, to know that the earth still spins on its axis and the seasons, albeit altered by a warming planet, still turn.

Last weekend, as we walked the Cape Cod National Seashore, I found peace in the ocean’s crash and susurrus, the crunch of sand beneath my sneakers, a gem of green sea glass. On Saturday night, we returned to the beach and gazed at the stars. There were Orion and Cassiopeia, the star cluster Pleiades in Taurus, and the russet pinpoint of Mars, all where they always are.

There were days in the past week when I was feeling so anxious about the power of false narratives that I wondered if my health would be affected. Then I finally told myself I simply couldn’t keep going down that rabbit hole. So, even as I still doom scroll all too often, I take my walks, and I read about Nature, and I remind myself, even as none of us knows what is on the other side—this, too, shall pass.

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: Shelby Deeter

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.

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.