Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

anxiety

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.

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

It’s Always Sunny in Philadelphia

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This past weekend, I flew to Philadelphia to spend a long-planned weekend with my younger daughter. We had originally intended to enjoy the Art Museum, dining out, and some quality mother-daughter time, to mark her birthday next week. I was also going as her support for a medical diagnostic procedure on Monday. But with the intensifying spread of COVID-19, the decision to travel was complex.

Driving to Philly from our home takes a good six hours. The flight takes under an hour from our local airport, which is a ten minute drive from our house. Under normal circumstances, it’s a no-brainer.

But flying is now fraught with worries about the risks of picking up the coronavirus in public spaces—and spreading it to others. My daughter was quite concerned for my health and willing to postpone my visit. I, however, was not willing to give up so easily.

Ultimately, after conferring with my long-time rheumatologist about my risks of dealing with the virus, and given that I have no coronavirus symptoms, nor have I knowingly come in contact with anyone who has traveled abroad to hot spots, I decided that I would make the trip. I took extra precautions, wearing latex gloves in the airport and on the plane, wiping down my seat belt, arm rests and head rest with disinfectants, not using the tray table. The flight is on a small American Eagle jet, and it was only a third full both ways, so no trouble staying three to six feet away from fellow passengers. No one was notably coughing.

I kept a wide berth from other travelers as I walked through and waited in airports. My daughter picked me up in Philly on Friday, and I sat a safe distance from my congenial Lyft driver on the way to the airport Monday afternoon. (I gave him a good tip, because business is understandably slow.) Al was waiting for me when my flight arrived back home.

Over the weekend, we had a very meaningful mother-daughter visit, with some important conversations about what’s happening and what could happen, a talk that could only occur in person. We ate in, took a sunny walk around the Art Museum (which was closed) and along part of the Schuylkill River Trail, did some sewing and crafts, and binge-watched Netflix series. I took her to her medical appointment, and, thankfully, all went well. Given all the uncertainty about travel in coming weeks and months, it was all the more important to visit now, when it was still possible.

Back here in Massachusetts, schools and universities are closed, restaurants and bars shuttered except for take out, and many people are now telecommuting. Public gatherings are restricted to no more than 25 people. My synagogue is closed, though conducting daily minyan via Zoom. My dentist is closed except for emergencies over the next few weeks. My weaving studio is on hiatus. My German classes are canceled this week and shifting to online next week. My gym is closed. Grocery stores and pharmacies are exempt from these restrictions, so far. Al’s work has shifted to a hybrid of work-from-home and in-person visits to his social work clients. I am well-accustomed to working from home, so my daytime schedule is status quo. Others are not so fortunate.

I’m sure that you, Dear Reader, are experiencing similar disruptions. None of us knows what is next. All I know is that I’m glad I went to see my daughter while I still could, and I’m glad I’m back home.

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.

Risk Assessment

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So, I’ve been wondering all weekend, what if I, what if we all have to self-isolate in response to the spread of COVID-19? The latest predictions, as confirmed cases and deaths here in the U.S. continue to climb, is that all kinds of restrictions are more than likely.

Thousands of Americans are already facing a range of constraints, from working from home for Microsoft in Seattle to cancelled classes at Columbia, Hofstra, and Yeshiva Universities in New York City—and everything, everywhere, in-between. Here in Massachusetts, a cluster of people who attended a business conference at a Boston hotel have come down with the virus, one Boston area school closed on Monday because of an infected parent, the St. Patrick’s Day parade has been cancelled, and the Governor is being peppered with questions about whether the Boston Marathon will be, too.

It just feels inevitable. The virus is already everywhere, and our lives are going to be disrupted for a while. So, what would it be like to have to stay at home (hopefully, only as a precaution, not because of having the virus, which is a whole other issue) for a couple of weeks?

Obviously, it pays now to stock up on essentials. I have all my prescriptions refilled, enough for more than a month. I have three boxes of latex gloves; plenty of canned goods, soap, and toilet paper; and enough hand sanitizer, for now. I even have a few surgical masks that I bought years ago for airplane travel, that I’ve never needed. Not as good as the N95 respirator mask, which should be saved for health professionals and people who are really at risk, but better than nothing.

Although I have some lung scarring from scleroderma, my rheumatologist tells me that it’s not significant enough to predispose me to pneumonia or make any recovery from infection more difficult. Which is a big relief. I’m certainly not going to try to test his theory, but it gives me more confidence about my risk level. Well worth asking.

So, back to my original question: what to do if I have to stay home for a couple of weeks? Fortunately, my work is already based here, so for me, unlike for many, that part is easy. Not true for Al, so we would have to absorb some income loss. I’m grateful that we could handle it, if necessary.

But two weeks is a lot of time to be stuck at home as a social precaution. One blog I read this morning actually had the best suggestion I’ve heard—learn something new. There’s plenty of free content online for perfecting a hobby you keep setting aside for lack of time, tackling that fabric stash for a sewing project, or learning another language. It’s also a good chunk of time to finally declutter your home (I’m talking to myself and my husband, here), or to read or reread those books that you never get to (and would otherwise give away because you’re decluttering).

With video chat, it’s possible to keep in touch with friends and loved ones and feel like you’re together, even when you’re not. It’s possible to organize support groups, to keep everyone’s spirits up during trying times. It’s possible to send kind and caring messages on social media, to counter all the fear and conspiracy mongering.

I certainly hope we don’t end up like Wuhan, China, or northern Italy, in government-imposed lock-down. But if we do face restrictions in movement to keep everyone safer and avoid a crush of cases that will overwhelm our health care system, then at least it’s worth considering how to make the best of a bad situation.

And, of course, there’s always Netflix.

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: Ryan McGuire

Wash Your Hands

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Every day brings more scary headlines about the coronavirus. Along with all the other bad news screaming for our attention every day, it sometimes feels like we’re all on the Titanic, heading inexorably toward that fateful iceberg.

But here’s the good news: One of the best ways to avoid getting COVID-19 is also the most simple and easily accessible: washing your hands after coming in contact with public spaces. Think about ATMs, touch screens at check-out counters, doorknobs, subway hand-straps, gas pumps—you get the idea.

I’m aware of this all the time because I have to be so careful about picking up an infection in one of my digital ulcers. While hand washing is the best option (20 seconds, about as long as it takes to sing “Happy Birthday” twice), I rely on hand sanitizer because I can’t get my bandages wet, and the sanitizer dries quickly. Use sanitizer that’s at least 60 percent alcohol and rub until it’s gone.

Likewise, the best way to avoid spreading the coronavirus—or any other contagious illness—is to practice good hand hygiene out of respect for others. That, and staying home when you’re sick.

Hand washing has been a cultural and religious ritual for millennia. But only since the mid-19th century has good hand hygiene been linked to better health in Western civilization. A Hungarian doctor, Ignaz Semmelweis, is credited with first discovering the connection in 1846 when he noticed that women giving birth in the doctor/student-run maternity ward at Vienna General Hospital had a much higher mortality rate than those in the adjacent midwife-run maternity ward.

Semmelweis determined that the doctors and medical students typically made rounds in the maternity ward right after doing autopsies. Midwives, of course, did not perform autopsies. So he figured that some kind of “cadaverous particles” were being transmitted to the pregnant women. His solution was to require all doctors and medical students to wash their hands with chlorine before treating his patients in the maternity ward—and the mortality rate dropped significantly.

Less than a decade later, Florence Nightingale championed hand washing in an Italian hospital during the Crimean War and also successfully reduced the rate of infections.

While Semmelweis and Nightingale were primarily fighting the spread of bacterial infections, hand washing works for preventing the spread of viruses, too. We’re all touching our faces more than we realize. COVID-19 spreads through droplets of fluid, from face to hand to surface to hand to face. All the more reason to wash or sanitize hands after being out in public.

It will be weeks and months before we fully understand the nature and true risks of this new disease. The number of people infected is certain to increase, both because of the exponential transmission rate and the fact that more people are being tested and detected. There is real reason for concern and vigilance. We need accurate facts, reliable reporting, and scientific leadership, not conspiracy theories and blame games.

In another time of high public anxiety, during the Great Depression in 1933, newly-elected President Franklin Delano Roosevelt reassured the nation with these famous words: “[L]et me assert my firm belief that the only thing we have to fear is fear itself—nameless, unreasoning, unjustified terror which paralyzes needed efforts to convert retreat into advance.”

Those are words worth remembering and repeating right now. That, and go wash your hands.

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: Daniel Levis Pelusi