Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

COVID-19

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

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

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