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Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

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Hearing

Eleventh Plague

Evelyn Herwitz · April 19, 2022 · 2 Comments

Last week was a roller coaster ride. It’s always a hectic time, preparing for Passover, what with all the cleaning and switching over our kitchen to our special Passover dishes and cooking, cooking, cooking. But this year, for the first time in three, we had planned to host the first seder on Friday night in person. Like so many families readying for the big holiday weekend, be it Passover, Easter, or the evening meals of Ramadan that coincide this year, we were really looking forward to, at last, celebrating together across a real table, rather than on Zoom.

Al had worked late in the kitchen on Tuesday, getting things ready so I could begin cooking the next morning. But when I came downstairs on Wednesday, he seemed weary and not himself. “Are you okay?” I asked. “I’m just tired,” he said. About an hour later, he was retching in the bathroom. My heart sank. I had recently learned that the Omicron BA.2 variant of Covid often presents with GI symptoms.

I sent him to bed, donned mask and gloves, and gave him a rapid test, which turned up negative. But I also knew that the rapid tests aren’t necessarily accurate in the first few days of symptoms with this variant. So I called our clinic and was able to get us in for PCR tests early that afternoon. They said we’d have results by the next day. I emailed our family that we were in a holding pattern for Friday night.

Al spiked a fever that afternoon and evening, but fortunately, he was fever-free by Thursday morning, not yet hungry, but able to eat a bland diet. I spent the rest of the day food shopping, cleaning, and cooking more food that evening. His condition continued to improve, but no PCR results. I emailed family that things were looking better, and we would confirm plans in the morning. I went to bed dog-tired.

Friday morning, still no PCR results, but Al was back to normal. We decided to green-light the seder, understanding that anyone who felt uneasy about coming should do what was best for them. All had to take rapid tests and have a negative result to attend. Our cousin’s husband, a physician, decided to stay home because he had been fighting a cold, which he told me with “97% certainty” was not Covid, but he went ahead and got a PCR test anyway, at his wife’s insistence. Finally, late morning, our PCR tests came back negative, a huge relief. Our daughters arrived late afternoon, and our other relatives that evening. I finished all my cooking just before everyone came. We had a wonderful seder together, and all felt so good to finally be able to share the meal and all the rituals in person.

Saturday morning, our physician cousin, whose family was hosting the second night, sent us all an email. He had tested positive. Now what? To my surprise, I did not freak out. There was nothing to be done. And I wasn’t going to spend the weekend fretting about the possibility of developing Covid symptoms. We ended up with just the four of us for the second seder. Our eldest returned to Boston that evening, and our younger daughter left for Philly the next morning. None of us have developed any symptoms, nor have our cousins who were exposed at home, who came here. Given that, if you’re infected, you can shed the virus 24-48 hours before becoming symptomatic (and most people do have symptoms), but all appeared to have spent the weekend symptom-free, we are most likely in the clear of a second-hand Covid infection.

A good thing, because Monday was my 68th birthday, and I really didn’t want the gift of Covid! I spent the day writing, which was wonderful.

So goes life in Covid times, which are not really over. Not yet. I hope you and yours enjoyed a lovely weekend, whatever holidays you may or may not celebrate. Stay safe out there.

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.

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Filed Under: Body, Hearing, Mind, Sight, Smell, Taste, Touch Tagged With: COVID-19, managing chronic disease, mindfulness, resilience

Oasis of Calm

Evelyn Herwitz · April 12, 2022 · 1 Comment

Last week, I spent four days on Cape Cod by myself, just to focus on my own writing. It’s the second time in about a year that I’ve given myself this kind of mental and physical space to write. It was a wonderful, productive time, in a beautiful setting, surrounded by nature. I wrote and planned and walked nearby beaches of the Cape Cod National Seashore. Nothing like getting away from all the distractions and cacophony of bad news to reset my mind and soul, think about what really matters—and make my own art. Here’s a taste . . .

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.

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Filed Under: Body, Hearing, Mind, Sight, Smell, Touch Tagged With: body-mind balance, managing chronic disease, mindfulness, resilience, travel, vacation

Re-Boost

Evelyn Herwitz · April 5, 2022 · 2 Comments

Thursday afternoon, as I awaited my podiatry appointment*, a young woman at the other end of the waiting room began to sneeze and sniffle. She wore a mask—below her nose. When the nurse came to check her temp before her appointment, she asked the young woman how she was feeling. “Fine, thanks,” the young woman replied. Yeah, right, I thought.

Maybe it was just allergies. Or maybe she was in denial. In any case, at least she was not seeing my doc, and she was in an exam room away from the one I was given a few minutes later. I kept my own mask on tight and reassured myself that I was getting my second Covid booster in a few hours.

Omicron BA.2 is way too contagious, and I’ve read far too many accounts of people getting a “mild” case that feels like being run over by a truck, so I jumped on the opportunity when another booster round was approved by the FDA for people 50 and over last week. I was hoping the side effects wouldn’t be too bad.

That proved true Thursday evening. By Friday morning, I just had a sore arm and “Moderna rash” where I got the shot. By midday, I started feeling achy and tired, but I was still able to get some work done. Then I needed to lie down. After a good nap and Tylenol, I began to feel better. By Saturday, I was pretty much back to normal, although the rash will still take a few days to clear. This has been my pattern with each vaccination.

A small price to pay for a better immune response to this clever, cruel virus. I’d much rather have a day or two of side effects than potential lung damage from Covid on top of my already scarred lungs from scleroderma. Given that I can’t control the safety precautions of those around me, I’m grateful that I have this way of taking care of myself and my family.


* As to my troublesome corn, my podiatrist said there was no way, most likely, to keep it from coming back, but after removing it, he ground down a spot on the underside of my foam insole to relieve pressure. So far, so good. I ordered my own version of this tool, which is actually the same as a toenail grinder for pets, so I can adjust my other insoles at home. Just need to put a little chalk on the corn, step barefoot on the insole to mark the spot, and grind a depression on the opposite side.

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: Nick Fewings

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Filed Under: Body, Hearing, Mind, Sight, Touch Tagged With: body-mind balance, COVID-19, feet, managing chronic disease, resilience

Stress Test

Evelyn Herwitz · March 8, 2022 · 2 Comments

When I was in elementary school in the ’60s, we used to have air raid drills. We would file out into the hallway, kneel down, put one arm under our foreheads and the other covering the backs of our necks. And wait for the all clear. Pretty ludicrous, as were the supposedly reassuring cartoon films we were shown about how to stay safe in a nuclear attack.

One day, when I was in fifth grade, our entire school marched down to the local air raid shelter for a tour. We held hands with the first graders, and the six graders escorted the kindergarteners. We all thought it was pretty neat—staying there would be like a camping trip! Our teacher, however, was so concerned for our well-being that he just let us just play and have fun the next day. We got pretty rowdy by afternoon, and he ended up yelling at us.

We all express stress differently.

That we could be seriously discussing the risks of a nuclear war, today, is beyond belief. In Ukraine, enemies battle over control of a nuclear reactor and bombs drop out of the sky onto schools. As I watch the news, I am at a loss for what to do, other than make contributions to legitimate NGOs that are assisting innocent victims of this unwarranted tragedy.

I feel extraordinarily fortunate to live in a place where my most difficult decision in all this is how much news to consume. I am trying to find the balance between staying informed and drowning in the deluge of tragic reporting. I don’t want to look away, but I also need to take care of my own health and well-being, or I’m of no use to anyone.

So, I am trying to be grateful—for family and friends, a warm bed, a home to call our own, a peaceful neighborhood, money in the bank, freedom of speech, the right to vote, so much more. If there is any lesson to be learned from these terrible times, it is never to take anything for granted.

I’m also trying to follow this wise advice from Oliver Burkeman’s “The Imperfectionist” monthly email. You can find his entire essay here:

“It’s been common in recent days to see people complaining that it’s hard to get any work done, or to get on with ordinary life in general. But this may be the moment for a judicious measure of tough love. Perhaps you just need to get on with things anyway! If you wait, instead, for all the existential threats to pass, all the desperate human suffering to subside, you’ll be waiting forever.

“So don’t wait. Not just because marinating in the news helps no-one, but because what you’ll be doing instead—meaningful work, keeping your community functioning, being a good-enough parent or a decent friend—that stuff actively does help. There’s something you’re here to do. And I highly doubt that it’s doomscrolling.”

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: Screenshot from “Duck and Cover” film, 1952, via Wikimedia Commons.

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Filed Under: Body, Hearing, Mind, Sight Tagged With: mindfulness, resilience

Awaiting Sunrise

Evelyn Herwitz · March 1, 2022 · Leave a Comment

On a cold winter’s day, I’m thinking of sunflowers. Beautiful, hardy, bright sunflowers have been linked to scleroderma awareness, first in Australia, and now worldwide, symbolizing the sun’s warmth that brings so many of us comfort. At each sunflower’s center are thousands of tiny disc flowers that mature into seeds— symbolizing seeds of knowledge and the quest for a cure.

Sunflowers are also the national flower of Ukraine. Every summer, golden fields of sunflowers blossom across the country, which is the world’s largest producer and exporter of sunflower seeds and sunflower oil. The distinctive bloom is woven into wreathes for celebrations, painted on walls and furniture and folk art.

Before they fully mature and open, sunflower heads follow the path of the sun across the sky and come to rest overnight facing east, awaiting the next sunrise. Various religions have associated the sunflower with spiritual knowledge and a quest for truth and enlightenment. It is an inherently optimistic flower.

So I hold onto that as I have struggled to concentrate this past week, watching the brutal Russian invasion of a sovereign nation unfold. Great bravery and courage inspire. I pray that innocents will be spared, and that Ukraine, with the support of the world, will ultimately prevail.

And to plant more seeds for scleroderma awareness and research, I offer this: The biennial Systemic Sclerosis World Congress, a virtual gathering due to the pandemic, opens next week, on March 10, bringing together experts from around the world to share their work. There is a free Patient Congress, as well, from March 11-12, with presentations by international specialists on many aspects of living with this complex disease. Registration closes on March 7. You can find more 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: David Travis

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Filed Under: Body, Hearing, Mind, Sight, Smell, Touch Tagged With: body-mind balance, managing chronic disease, mindfulness, resilience

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About the Writer

When not writing about living fully with chronic health challenges, Evelyn Herwitz helps her marketing clients tell great stories about their good works. She would love to win a MacArthur grant and write fiction all day. Read More…

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Recent Posts

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I am not a doctor . . .

. . . and don’t play one on TV. While I strive for accuracy based on my 40-plus years of living with scleroderma, none of what I write should be taken as medical advice for your specific condition.

Scleroderma manifests uniquely in each individual. Please seek expert medical care. You’ll find websites with links to medical professionals in Resources.

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