Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

managing chronic disease

Tick-Tock

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Today’s announcement: I have entered the world of wearable health tech. This was not planned. In fact, it’s something I’ve avoided, because I didn’t want to obsess about how many steps I’ve taken each day. However, I learned some things from my heart study that made this a priority. So I am now wearing my new Apple Watch, which has already proven its worth.

Back in December and early January, as I’ve written previously, I did a three-week Holter monitor study, because my arrhythmia had been very active in recent months. And, as expected, the study validated my observations, fortunately with the reassuring news that my annoying arrhythmia is still within the normal range of abnormal, as it has been for decades. A nuisance, more than anything.

However, the study also recorded a more concerning development, one 15-second episode of a Type 2 Heart Block. There are two types of Type 2 Heart Blocks, and true to form, mine was the more complicated, which involves a blockage of certain electrical signals so they don’t transmit properly and the heart slows down. In my case, I had no symptoms of my heart rate slowing, because one part of my heart doubled the number of electrical signals it was sending, but only half of those transmitted, so the result was my normal heart rate.

This was rather disturbing news. I’ve known for years that scleroderma can cause changes to heart tissue over time. I had a long discussion with my cardiologist about this several weeks ago, and we agreed that I needed some way to keep monitoring my heart in case I do experience episodes of sudden light-headedness or dizziness going forward. This has happened to me on occasion over the years, but even though I felt weird, it was so infrequent that I just let it pass. The options were: (a) a mini portable ECG monitor that I could use to record readings and then email reports to him; (b) an Apple Watch, which has an ECG app that I could use to do the same; or (c) a small chest implant that would monitor my heart for three years.

The implant was a non-starter. The mini portable ECG was the most affordable, but a nuisance to carry with me all the time. So, I went for the watch. Fortunately, I could afford it. Not cheap, but a powerful little computer to wear on your wrist with many useful features.

I put the system to the test recently, when I got quite stressed one Friday evening when I was trying to reach Al and could not get hold of him (it all worked out, but it was one of those days). My arrhythmia kicked up big time, so after Al got home and all was well again, I took several ECG readings on my new watch. I picked the first and the last when I felt back to normal, and emailed the PDFs from my iPhone to my cardiologist with a note. Within a half hour, he wrote me back that these were the “okay” kind of extra beats, so no problem, but to keep him posted. We’re catching up again this Friday.

This was very reassuring. I’ve had no cause to send any more ECGs since then, but I am now learning to use my watch to track exercise. It’s always been clear to me that my heart feels better when I walk, but I’ve been avoiding it because of the cold weather. Now, however, I have a big incentive to get moving. And I have a very cool way to keep track of steps, exercise, calories burned, and general movement. Already, I’ve pushed myself out the door for walks that I wouldn’t have taken before all of this. I’ve tried out a fitness routine. And I do feel a little better for it all, so far.

It’s been a month of coming to terms, or, at least, beginning to come to terms with the fact that this very ornery disease still has some curve balls to throw at me. I have lived with scleroderma for nearly 40 years, now. I’ve been fortunate that my disease has always moved slowly enough for me to learn how to compensate. With the help of some amazing tech and a wonderful cardiologist, I intend to continue doing just that.

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.

Ray of Hope

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In the New York Times’s Morning Brief on Monday, editor David Leonhardt made a really important observation about the Covid vaccines: they’re more effective than we might think. He notes that the percentage effectiveness data we’ve seen so far—about 95 percent for two shots each of Pfizer and Moderna—sounds good but not perfect. But Leonhardt explains that effectiveness data actually understate the true impact of the vaccines.

When effectiveness data are calculated, mild cases post-vaccination are counted as failures. But a mild case of Covid, at least as far as we know, is more like a typical case of the flu. Leonhardt doesn’t address the unknowns of long-term effects of the disease, regardless of severity, which remain a black box at this time. But his point is that, even if you contract the virus after vaccination (low probability, at least, for the first two vaccines to be approved by the FDA), the chances of contracting severe, hospitalizing, deadly Covid is pretty much nil.

As this article about the Moderna vaccine in Science puts it, Moderna’s vaccine “had 100% efficacy against severe disease.” That same assessment is echoed in this article by Harvard infectious disease specialist Paul Sax in The New England Journal of Medicine. Writes Sax: “First, the [Pfizer and Moderna] vaccines prevented not only [almost] any disease due to SARS-CoV-2, but—quite importantly—severe disease. Prevention of severe disease could convert Covid-19 from the global threat it is now into more of a nuisance, like the common cold.” He also notes that “some protection became apparent just 10 to 14 days after the first dose.”

Even the yet-to-be-approved Johnson & Johnson vaccine (66 percent effective) and Novavax vaccine (89 percent effective) need to be understood in the same way. While data indicates that more test subjects contracted Covid than with the Pfizer and Moderna vaccines, the lower effectiveness percentages don’t communicate that these vaccines still prevented severe disease among those who got Covid post-vaccination.

So, as we all hunker down, awaiting our turn for a shot, amidst scary news of the new super-spreading Covid variants, there’s good reason to feel more optimistic. And we can each help others stay healthy, after we’re fortunate to have been vaccinated, to keep wearing those masks to avoid any chance of spreading mild or symptom-free Covid to others who are not yet protected.

It may sound trite, but it merits repeating: We are truly all in this together.

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: Thom Holmes

Vaccine Powerball

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Have you received the Covid vaccine, yet? That’s the Big Question in all my conversations with family and friends, now that we have a new president and science is once again taken seriously.

So far, the biggest winner of the vaccine lottery in my family is my sister, who bravely volunteered for the Moderna vaccine trials last fall and won the jackpot when she learned last week that she got the real thing. Thanks to her and thousands of other willing guinea pigs, we’re all going to be safer in coming months.

Next is my eldest daughter, who received her first Moderna shot on Friday, and Al, who is scheduled for his first Moderna dose on Tuesday afternoon. Both are social workers involved with home care, which put them in Phase 1 here in Massachusetts. Twenty-eight days from their first appointments, they will get the second dose. Then it’s a two week wait for the vaccine to be fully effective.

On Monday I learned that Phase II here begins February 1 for persons 75 and older. Those of us 65-plus, also those with co-morbidities (two check marks for me) are next up, with appointments coming online in mid-February. Counting the days . . .

While our daughter was able to get her shot through her employer, Al was on his own. We learned on Thursday night that he was now eligible (as opposed to original estimate of early February), so on Friday morning he contacted his boss, who had also just received the news from state officials, and Al got the link for the state attestation form that documents his status as a home care worker. Then began the hunt for an appointment.

I had already downloaded the contact information from the state website for vaccination sites in our area. But the first site, a Walgreens, (a) had an appointment page that lacked an option for the Covid vaccine and (b) was out of doses through this week. Another site was closed on Friday and not answering their phone. The third site had no appointments available for weeks.

There is a huge drive-through site at Gillette Stadium, home of the New England Patriots, but that’s a 90 minute drive from here. Nonetheless, I began checking for appointments, but found nothing. Then, in the midst of this increasingly frantic search, our rabbi happened to call me, and when I told her our predicament, she mentioned another site, maimmunizations.org. This website had one universal form to complete and more vaccination locations listed, so I began flipping through them to see if I could find anything for Al.

At first, it seemed like every available time slot was taken. I clicked on one rare opening, only to have it snapped up a split second before me. I was almost about to give up when another appointment at a local site suddenly appeared (nothing was open when I had checked that same date and site a few minutes earlier). So I grabbed it. Felt like a game of wack-a-mole.

I hope, by the time appointments open for my cohort, there will be more sites, more vaccine, and a more effective appointment interface. Meanwhile, I’m laying low, avoiding in-person shopping as much as possible. Al is out and about because of his work for his clients, but he’s agreed to double-masking when shopping, as an extra precaution.

Such a strange, strange time. At least the days are getting noticeably longer. Stay safe, Dear Reader. Stay safe.

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: dylan nolte

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