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Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

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managing chronic disease

Summer’s Gift

Evelyn Herwitz · July 15, 2025 · 4 Comments

There are a lot of reasons to complain about the heat this summer—too much, too humid, too risky. But there is also one big blessing for me: my finger ulcers are healing.

In particular, the left ring finger ulcer that I’ve been nursing since January through a lost nail and several rounds of antibiotics is much improved. A few visits to our hospital’s wound clinic were extremely helpful, especially learning the benefits of a special petroleum-jelly-infused gauze, typically used for burns, that has made a huge difference in managing the moisture level of the ulcer.

Keeping my ulcers moist but not too moist is always the key—and the trickiest part of this process. If the ulcer is not moist enough under the dressing, the skin tightens and becomes quite painful. But if it is too moist, the skin breaks down even further, takes longer to heal, and invites infections.

I also discovered that when my skin is extremely irritated, plain petroleum jelly is better than Aquafor, which has been my go-to ointment for decades. It contains lanolin alcohol, which can cause me issues. I confirmed this with wound clinic staff, and they said it’s not an uncommon reaction.

Another very useful medication that I received from the wound clinic is a steroid ointment, Triamcinolone Acetonide 0.5% (requires a prescription). This can only be used for seven days at a stretch, then you have to take a break. But it really calms inflamed skin.

I change my bandages twice daily, using whatever combination of dressings is most appropriate for that particular ulcer, a process that takes about a half-hour at present. Atop any ointment I place a small piece of very soft gauze, then anchor it with breathable fabric bandages. Right now, I’m down to four bandaged fingers during the day and three at night (one needs extra protection from typing).

My right thumb is my current problem child, with calcium bits beneath the surface, so I’ll bring that issue to the wound clinic this week when I review my situation. I also need advice for how to ween the left ring finger from dressings so the nail can (maybe) grow back.

I’ll never be free of my bandages. I’ve come to accept that fact. But I’m grateful, as always, for access to excellent medical care. And glad, even when it’s too hot, even for me, that summer is here, for now.

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, Mind, Touch Tagged With: finger ulcers, hands, managing chronic disease, resilience

Stand Up Act

Evelyn Herwitz · July 1, 2025 · Leave a Comment

I’ve been thinking a lot about my posture, lately. Back in May, after I performed a scene from The Glass Menagerie as the culmination of my spring adult acting class, I watched a video of same and was dismayed to see how stooped I’ve become. Some of this is just due to aging, loss of elasticity, and my shrinking spine cartilage. But I also observed how I pull myself inward physically, a deep habit of protecting my hands. While others may not notice this, it was quite striking to me.

Nothing like watching yourself on video to get a reality check.

Ever since, I’ve been trying to remind myself to stand up straight, both to improve my overall health (the more I stoop, the more my whole body feels out of whack) and mental attitude (facing the world head-on). It’s getting a little bit easier, but my slouchy stance is like a strong rubber band that snaps back.

So, I’m going to try Pilates again. The last time I took a class was before Covid, probably even a few years prior to the pandemic. A couple of years ago, I tried yoga, only to throw out my back. It took weeks to recover, and I never returned. I used to enjoy Pilates, especially using the reformer equipment, and I really need a way to strengthen my core.

I found a studio that’s closer than the one I had been attending the last time, and my free intro half-hour is this Thursday. This studio also seems to have a really good range of classes for all skill levels, so I can work my way back into it. Only one problem: They don’t post their rates. Which I don’t like. This studio is part of a franchise, and obviously they want to hook you in with a free trial rather than scare you off with high prices.

So, I’ll just have to try it out and see if it’s worth whatever they are asking. I have enough experience with Pilates to know good instruction when I find it. And my health is priceless.

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: Joyce Hankins

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Filed Under: Body, Mind, Sight Tagged With: body image, body-mind balance, exercise, hands, managing chronic disease, resilience

What Next?

Evelyn Herwitz · June 24, 2025 · 2 Comments

Somewhere I read recently a recommendation that resonated, a way to manage stress. The concept was to “shorten your horizon.” The idea is not to stop setting goals or making plans or other future-oriented tasks. Rather, it’s about adjusting how far to look down the road in anticipation of events.

Given all the scary news of late, this seems like a sound approach to coping. Given, also, that I have a fiction writer’s imagination—both a blessing and a curse—I find this appealing. If I focus only a week ahead, rather than a month or six months, or a year, or, good grief, even beyond that, I have a much clearer grasp on what is more likely to happen, how I might be affected, what I can and cannot influence, and how to adjust expectations and plans accordingly.

Of course, reality has a way of throwing all of that into the hopper. The only truth we ever know is what is happening in this moment. And living fully in the present is truly the only way to find fulfillment in each day.

Which is why shortening your horizon can help you stay more in the present. If your mind is not always preoccupied with the future, especially the far future, you aren’t as distracted from appreciating what’s in front of you—particularly relevant with so much trouble in the world.

This is also an essential skill set for coping with a chronic disease like scleroderma. You need to learn what to watch for, seek out excellent medical advice, follow your treatment plan, but also appreciate what each day brings. Years ago, when I was first diagnosed, I decided I didn’t want to know the odds of survival, which turned out to be one of my best instincts. At the time, the expectation was about seven years, a terrifying prospect. I intuitively learned to focus on a shorter horizon back then, because to do otherwise would have been paralyzing.

So, here I am again, relearning that same lesson, as it applies to life in a tumultuous world. It’s second nature for how I manage my scleroderma. Now I just have to figure out how to master that outlook for events even farther beyond my control.

It’s a work in progress.

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: Nicole Avagliano

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Filed Under: Body, Mind Tagged With: managing chronic disease, mindfulness, resilience, stress

Checking Up

Evelyn Herwitz · June 10, 2025 · 1 Comment

Since I’ve returned home from our trip to Germany, I’ve had a lot of doctor’s appointments. Not because I’ve had an emergency or other complications. Just because my schedule fell out this way. Every so often during the year, the appointments stack up, like planes over Logan.

So, I’ve had an echocardiogram at BMC, a follow-up with my periodontist about my tooth extraction and pending implant, a check-up with my BMC pulmonologist #1 who follows me for interstitial lung disease, a check-up with my NP gynocologist, and a meeting with my new local rheumatologist, since my previous one left the practice. Later this week I have a check-up with my BMC rheumatologist, and next week appointments with my BMC pulmonologist #2 who follows me for Type 2 pulmonary hypertension, and with my podiatrist on the South Shore who saves my feet. I have a bookmark sticky note in my planner to remember to schedule a few tests for the fall, before the next round of visits.

Then I get a break for a few months, assuming all goes well.

It’s a lot of driving and time, and it can get tedious and exhausting. This is a complex disease that involves a lot of details and coordination of care. But I’m grateful that I have an outstanding team in place here at home and an hour-or-so-depending-on-traffic-away in Boston and environs. I’ve been dealing with scleroderma and its various manifestations for more than four decades, so it’s just all part of the rhythms of my life.

I’m also grateful that our gerontology team makes house-calls.

Stay well, 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: Kelsy Gagneben

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Filed Under: Body, Mind Tagged With: managing chronic disease, resilience

Taking a Break

Evelyn Herwitz · May 13, 2025 · 9 Comments

I am happy to report that I got through my extraction of a resorbed tooth with no complications last Wednesday—no fun, but it’s done. So I was able to get my spring Covid shot on Friday, also without complications. My lungs have cleared from pneumonia,and I caught up a bit on rest over the weekend, along with enjoying a lovely Mother’s Day visit with my eldest in Boston. My finger ulcer heals slowly, but at least it continues to heal.

I’m also happy to report that my acting debut, a scene from The Glass Menagerie by Tennessee Williams last Monday night, was a success. First time I’ve performed in a play since the sixth grade, and I remembered all my lines (no small feat, giving how much harder it is to remember stuff at this age, especially with scleroderma brain fog).

And so, I will be taking a few weeks off for the rest of the month, to recharge. I’ll be back on this blog in June. In the meantime, Dear Reader, I wish you good health, good medical care, and that you make the most of each moment.

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 Clode

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Filed Under: Body, Mind Tagged With: managing chronic disease, mindfulness, stress, tooth resorption, vacation

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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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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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