Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

managing chronic disease

Ever Since

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Last Thursday afternoon I got a call from my cardiologist’s nurse. She was checking in on how I was doing with my heart study, if I’d had any issues or symptoms. So I told her that the monitor had collected plenty of data, given that my arrhythmia had been quite active at various points over recent weeks.

Especially on Wednesday, during the violent siege on our nation’s Capitol. Watching the rioters, I was horrified. I thought of my mother, now long gone, who was 10 years old in Berlin during the Reichstag Fire in February 1933 that cemented the Nazi’s rise to power.

“They’re saying it was Antifa,” the nurse told me, in a confidential tone. She began to recount the latest distortions of what we had all witnessed on live television the day before, rioters breaking into the Capitol beneath fluttering Trump banners and the Confederate flag. I tried to stop her, but she went on enthusiastically for a few minutes.

Finally, I interrupted. “No,” I said, “it was not Anitfa, it was Trump supporters who stormed the Capitol, but I don’t want to get into an argument with you about it.”

She deftly switched back to my heart study and said she would put my cardiologist on the line. I did not mention to him what she said.

But I have been thinking about it ever since.

This woman is a person with empathy. She spoke to me very kindly about my symptoms. I’m sure she’s a fine nurse. She was also spouting very dangerous rhetoric, which she clearly believes.

Words matter. Lies repeated, amplified, matter. Facts, evidence, truth, critical thinking—all matter.

So does our ability to see the humanity in each and every one of us.

I am praying for our country, for our president-elect and vice president-elect, and for a peaceful transition of power on January 20. I am praying that the maelstrom of lying and distortions will finally, finally, spin itself dry. I am praying that we can truly hear one another, seek common ground, and collaborate for the common good to solve the enormous problems facing us and the world.

After one of the darkest days in our nation’s history, let there be light.

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: Andy Feliciotti

Disconnect

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Monday morning, I woke up with mild vertigo. This happens every so often. An ENT doc once explained to me that there are tiny crystals in your inner ear that can get displaced and cause the dizziness.

Or something like that. I can’t look it up, because our internet went down around 9:45. As I write, about six hours later, it has yet to come back. Our cable company’s recording says they are working to repair a damaged fiber optic cable. No estimate as to when we’ll be back online.

So, I am hoping that both my vertigo and our lost internet are just minor setbacks for the day and not bad omens for our bright, shiny New Year.

Meanwhile, I’m adapting to the day’s forced slower pace. I postponed one group Zoom meeting and held my other meeting the old fashioned way, by phone. Without emails to read and write, I drafted correspondence to send later. I’m composing this post in Pages, rather than directly into my blog, so it will be ready to cut and paste when the internet comes back.

At the same time, I feel like I’m bobbing in limbo. This sensation is not helped by the vertigo. The sun is already casting long shadows outside, and there is no update from our cable company. I trust that the internet will eventually come back on, and that my sense of balance will settle again in a day or two. But that doesn’t make the waiting any easier.

Not unlike how so many of us feel disoriented and stymied every day by the pandemic in our ability to accomplish the simplest tasks. But I could do without being caught in a microcosm today.

On the plus side, I can’t doomscroll, either. . . .

. . . Later that night:

Internet revived around 6:30 p.m. Postponed meeting was productive. And, of the 75 emails that downloaded when I regained service, only about five were worth reading. Still have some vertigo (here’s an explanation of those displaced crystals), but not too dizzy to keep me from writing. At the end of the day, that’s what matters most.

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: Radvilas Seputis

Heartfelt

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Years ago, early in my life with scleroderma, I developed an arrhythmia. For decades now, my heart occasionally feels like it’s skipping a beat. Actually, however, as my cardiologist has explained to me, I’m having an extra contraction. It gets worse when I’m stressed and is my orange alert to slow down, examine what’s going on, and make some adjustments in my life. It always improves with regular exercise, especially walking.

Recently, in the weeks after the November election, my arrhythmia has been more active. No surprises, I guess, because I have been very stressed about both the divisive politics plaguing our nation and the pandemic surge. But its frustrating and annoying, to say the least.

So, when I spoke with my cardiologist recently, he recommended doing a heart monitor study for up to 30 days. (Hopefully I won’t need to wear the monitor that long.) It’s probably been 35 years since I wore a Holter monitor, and I think it was maybe for only a week. Back then, the monitor was this big clunky device, the size of an old Motorola cell phone, that you wore around your neck or on a belt, connected to a bunch of wire leads attached to your body. Basically, it was a portable 24/7 EKG. You had to make notes in a notebook if you felt any symptoms, with date and time. All that information was compiled after you turned in the monitor and notes. Not fun.

Fortunately, technology has significantly advanced over the past three-plus decades. No appointment necessary to activate the device. It arrived via UPS on Friday, in a small box with the equipment and how-to instructions. Instead of a big, clunky monitor, there are two small, rechargeable monitors about 1.5 x 2.0 inches and maybe a half-inch high. You charge one while you wear the other, and the charge lasts about 12 hours. The monitor snaps into an oval foam base. On the back of the base are two snaps for removable electrode patches. So basically, you plug in the monitor, attach the electrodes, and then peel off the sticky backing from the patches and adhere to your skin. The correct positions (two alternatives) are illustrated in the guide book.

Readings collected by the monitor then feed via wireless tech to a Samsung phone that is solely for collecting the data. This, in turn, sends reports periodically to the tech company that is running the study. If you experience a symptom, you press the button on the monitor, and then the phone displays some choices to describe the symptom. You tap the appropriate description and go back to whatever you were doing. You just have to keep the phone within 10 feet; if you go out of range, the data will download when you’re close again.

Pretty amazing. And relatively easy to manage. You can’t get it wet, so you have to pause the study and remove the monitor when taking a shower or bath. I also find that my skin needs a break every 24 hours from the electrode patches, which cause a mild rash, even as I asked for the extra-sensitive skin version. So I wait about a half hour after my evening shower before reattaching everything. In the morning, I just switch out the monitors.

My cardiologist said that if I experience enough symptoms over the first week or so, I can call him and see if he can get an early version of the report, so that we can end the study. I’m hoping that will be the case. I’ve certainly recorded symptoms at least a dozen times so far. From what he tells me, it’s probably nothing serious, just an annoyance that I continue to live with. But I’m glad that we’ll have an updated baseline, at the very least.

Ironically, he also predicted that my symptoms might vanish, or at least lessen, once I have the monitor on. That was certainly true for the first 24 hours or so. How odd to have the presence of the monitor be somehow a placebo or, at least, a reassurance that I’m going to get some answers. The disconcerting experience of the extra beats, especially when they go in runs, is worse when I don’t know what it means.

Meanwhile, I’m trying to get in some walks, despite a lot of snow here in recent days and much colder temperatures. That, and trying to better manage my news diet. The winter solstice is one day past. Let there be light.

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: Jude Beck

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