Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

mindfulness

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

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

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.