Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Mind

Flu Season

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Despite our vaccines last fall, the flu has found its way into our home. On Sunday afternoon, Al came back from running errands, went upstairs and went to bed. He never does this. He roused for supper and ate well, then lay down on the couch. Definitely out of character.

So I dug out a Covid test from under the bathroom sink. It had an expiration date of last June, but I gave it to him anyway, and it was negative. Then I took his temp. He was running a fever. Time to go out to CVS and pick up a few combination Covid/Flu tests.

It was dark and cold outside, about 16°F. I found the tests and an OTC med for his symptoms, and was on my way out the door when a tall, thin man standing by the side of the building called out to me. “Excuse me, Ma’am, but can you spare a dollar?” he asked. It was cold, I was in a hurry to get home, and I don’t usually have cash on me. So I declined.

As I sat in my car, with the heat on, organizing my purchases, I felt terrible. Here was a poor soul in the freezing cold, politely begging for a small handout. I thought of all the people in Minneapolis who are taking such good care of their neighbors under duress. I looked in my wallet and realized I had some bills. So I got out of the car, went back to the man and handed him a dollar. He was so grateful. He had no gloves, no hat, a shabby winter coat. It wasn’t enough, but at least it was something.

I thought about him all the way home.

Back at our house, I gave Al the new combination test. Still negative for Covid, but positive for Type A flu. Good grief. Called our medical practice, got some advice, and as I write Monday afternoon, I’m still waiting to find out if I can pick up some Tamaflu antiviral medicine for Al. I’m hoping the fatigue that has settled over me today is just fatigue.

And what of the man outside the CVS in the brutal cold? I hope he found warm shelter. I hope he bought something hot to drink. Next time I’m asked, I’ll do better.

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: Ales Krivec

Storm Watch

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As of midday Monday, as I write, we are immersed in white. Al shoveled a foot-and-a-half of snow for two hours this morning, then fell asleep in his armchair for a while. At some point this afternoon he’ll go back outside and finish clearing our drive. We’re expecting up to another three inches by nightfall.

I’m glad he took a break. The snow is fluffy, but even so, it’s a lot of work. I wish I could help, but between the extreme cold and my hands, there is no way for me to do so. Indeed, it’s been decades since I could shovel snow. The last time I can recall, we still lived in our prior home on a major street, and as I was trying to clear the foot of the drive, a plow went by and blocked it up again. The guys in the plow laughed.

Today, Al told me, the plow that was doing another pass on our street actually stopped and helped to clear the end of our drive as well as our neighbor’s across the street.

Looking out for each other is essential in a storm, all the more so today when the storm is not just weather-driven. To the people of Minneapolis, my heart goes out to all of you, especially to the grieving families and friends of Renée Good and Alex Pretti, as well as my gratitude for showing the world what it really means to be in community—in the most bitter, cold, savage circumstances.

I contacted my senators today to express my outrage and ask them to use every tool available to stop this madness when they vote on appropriations this week. It took all of five minutes. It’s the very least I could do. You can find contact information for your congresspeople 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.

A-Peeling

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Prepping vegetables for meals is one of those tasks that I often find challenging. I need to wear latex gloves when I cook so I don’t infect my finger ulcers, and this makes handling food difficult, because my fingers have been shortened by both resorption and surgery, so the tips of the gloves always flop around and get in the way. Onions, in particular, are tricky, and my lack of tears from Sjogren’s can make slicing them extremely uncomfortable.

Then there is garlic. I use a lot of garlic in recipes, but it is a beast to peel. I can’t do the trick with slamming the flat side of a chef’s knife on a clove, because I need to protect my hands. So I end up trimming the top and bottom with a paring knife and then slowly picking away the papery skin. Very, very tedious.

That is, until today, when I tried out my new silicon garlic peeler. At least a year ago, a good friend who is an excellent cook introduced me to this little gadget, which I thought was ingenious but never got around to buying—that is, until I had to order some new potholders last week to replace old stained ones that had attracted a mouse. As long as I was finally replacing those gross potholders, why not get the garlic peeler, too?

Here’s how it works: The inside of the tube is covered with bumps to create friction. You place the clove inside, then press down on the tube with the heel of your hand and roll it back and forth a few times. Presto! It neatly removes the skin and leaves you with a perfectly clean garlic clove! Rinse out the tube, and you’re good to go.

Whoever the genius is who invented this handy (literally), inexpensive tool, my heartfelt thanks. Now, if anyone knows of a good tool for easily peeling and slicing onions that won’t make me cry dry tears, I’m all ears.

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.

Try, Try Again

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Every morning, I try to spend a few minutes meditating. I use an app, which is helpful and instructive. My mind wanders as minds do, but I am, over time, getting more adept at slowing down and focusing on my breath.

This came in very handy on Monday, when I found myself back in my dentist’s chair, because my new crown for my fifth implant came loose last week. No so loose that it popped out, but loose enough that it needed immediate attention. Of course, this all happened on New Year’s Eve, when no one could see me for several days. (Why do these kinds of issues always happen on a Friday evening or right before a long holiday weekend?)

In any case, it took two hours of poking and prodding by my long-time dentist, Dr. K, plus several tries to remove the crown and adjust its size so it would fit properly by his partner, Dr. F (she of the smaller fingers and more delicate touch). Ultimately, that did not work. I had been concerned from the get-go a few weeks ago that the crown was too big, and apparently my instinct was correct, because it never seated properly, which is why it loosened up.

So, now I have to return in a few weeks to redo the dental impressions, and then they will order me a new crown. Why didn’t this one fit—a problem I’ve never encountered before, thankfully? It was very hard to take the digital scans, because of my tight mouth, so that might have been the culprit. (For the repeat, we’ll do it the old fashioned way.) Or, as Dr. K surmised, the manufacturer that he’s worked with for years has changed personnel, and his trusted contact who always did things perfectly is no longer there.

In any case, at least there is a solution that I don’t have to pay more for, and the implant itself (what the crown is screwed into) is still solidly in place (my biggest concern). Everyone thanked me for my patience. I was grateful that I could breathe my way through it.

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: Filip Mishevski

What If?

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For years, our younger daughter has been asking me to document how I bandage my fingers. What if you can’t do it and need help? she asks. What do I need to know?

So, last week, while she was visiting for the holidays, we finally got down to the nitty gritty. I reviewed all my dressings, what I use for which kind of ulcer, and she took videos of me bandaging my fingers. Right now, I have five ulcers, with various issues, so it was a teachable moment, as they say. I also guided her as she bandaged one of my thumbs, so she could get the feel of the process. Which she got, immediately.

But we didn’t stop with my bandages. She created a computer file, and we went over all my medical issues, medications, doctors, and more. It was a lot to discuss, and it was exhausting to pull all that information out of my head, but very important and well worth the time and effort.

You never realize how much you do automatically for self care until you have to stop and explain every step, especially for a disease as complicated as scleroderma. And if, God forbid, I became incapacitated, it’s very reassuring to know that she’d have a complete written and recorded explanation of what help I would need. I certainly hope she doesn’t have to access any of that information anytime soon. But at 71, I know I have to be realistic and prepared for more help than I am accustomed to. And I am extremely grateful that she has insisted that we create this manual—and finally did.

Wishing you, Dear Reader, and your loved ones a healthy and fulfilling New Year. This one’s been a doozy. Here’s hoping 2026 is a better year for all.

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: Jesse Cason