Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Resolute

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It’s nearly New Year’s. Already, 2025 looms as an even bigger challenge than 2024. But, we won’t know until we live it.

Which is why, this year, for my resolutions, I have a simple, basic goal. I call it the Three C’s to Strive For:

Inner Calm.

Clarity of mind and purpose.

Courage.

That’s it. I know this will be a constant work in progress. I’m really good at finding lots of things to do to take my mind off what is worrying me. Sometimes this is very productive. Other times, it’s a smokescreen.

How to proceed? I know meditating will help with the first two. Lots of deep breathing. Exercise helps, as well. Limiting my news diet and social media are essential. Writing my novel is essential, too. My acting class, which starts up again mid-January, is a surprising source of focus and clarity.

Courage is a learned skill. My ongoing volunteer work to ensure that our Fair City is able to thrive as it withstands climate change is both a source of uplift as well as an ongoing lesson in how to make a positive difference locally. That’s helped me to become braver in public and to build a team of allies. I hope to keep strengthening those muscles.

Even as I write this, however, I also know that there will be plenty of set-backs and difficulties ahead—but not to let any of that predict what can or will come next.

The only thing that’s real is the moment we’re in. My best wishes to you and your loved ones, Dear Reader, for a healthful, resilient New Year.

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: Oliver Cole

Gullible

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I am usually pretty savvy when it comes to internet scams. Fool me once, and all that. But I got taken in on Monday. I feel like an idiot, because the warning signs were all there. So, I share this as a cautionary tale, in case you get phished.

This started as an email from my sister-in-law, asking if I had an AOL account. “She” was writing to me at my gmail account. It seemed odd, so I wrote her back separately from the original, using my AOL address, to see if it was actually her. The answer was yes. I thought, okay, and asked what was up. And here came the pitch:

Supposedly, a friend was diagnosed with stage-4 mesothelioma and needed transportation to her appointments. It was the friend’s birthday, and the writer claimed she had a problem with her credit card. Could I please order an Uber e-card via Amazon for her, and she’d pay me back? Of course, this had nothing to do with AOL. Duh.

Now, being that it’s the holidays, and I had a friend who died from mesothelioma, I wanted to help. I thought this was legit. I should have known when I got the follow-up email, with a link to click for Amazon and a request for four $100 Uber e-gift cards to send to an email address. It seemed like a lot of money.

But, like I said, I was in a holiday mood and went ahead and got the cards. Then I asked my supposed sister-in-law how she’d pay me back. Did she have Venmo?

I didn’t hear back right away. Within five minutes of completing this good deed, my stomach sank. I realized I’d been scammed. I tried calling my sister-in-law, but her line was busy. Then I sent her a text, which I should have done in the first place. Sure enough, she’d been bombarded by friends calling about the scam.

I called my credit card company and reported the fraud, so I will get my $400 charge canceled and a new credit card. I changed my passwords for my Amazon account and both of my email accounts. I removed my other payment methods from Amazon. I called my credit card company back to see if it was okay to just monitor those other cards, in case they got sucked up in the phishing attack. I’ll do that for a few weeks, but may well replace them, also. Then I left a message with my computer repair service to see if I need to scrub my iMac.

In the midst of all this, I got an email from the scammer saying, yes, I have Venmo. Thank goodness I had figured out what was up by then, or I could have compromised our bank account. And, of course, soon thereafter, I got another email asking for more money for the poor friend, who now needed seven $100 Uber e-cards. I wrote back that I knew it was a scam, then blocked the email and reported it to Google. I also texted my sister-in-law some contact info for how to change her password on her email account.

Good grief. I think I’ve covered all my bases. I got scammed several years ago and fell for it, and I’ve saved Al from several scams, since. I should have known better. Scammers prey on our best intentions. Don’t get fooled. May your holidays be joyful and scam-free!

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: Photo courtesy of Gratisography

Sleep Tight

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Cold weather makes me want to hibernate. Four days from the winter solstice, I start yawning by mid-afternoon as the sun slips past the trees beyond our home.

Fortunately, the cold weather also makes it easier for me to fall asleep and stay asleep most of the night. I may be jinxing myself by writing this. I sure hope not. Sleep is what’s saving me these days.

I’m also having a lot of very strange dreams. These usually surface just before dawn, when I have to make the inevitable trek to the bathroom. But I’ve been able to drop off again, because it just feels so good to get warm under the covers. And the strange dreams typically dissipate soon after I wake for the day. Which is a good thing. Because they are really strange.

In about a month, daylight will feel longer once more. It will get easier to drive home from Boston on the Mass Pike in the afternoon by late February, when the solar glare going west is less severe. I’ve been noticing buds on the trees and shrubs around our home, always an encouraging sign of new life to come.

And, if I’m lucky, I’ll continue to sleep soundly, regardless of the onslaught of bad news that floods our world. It’s essential to my health and well being, to my resilience and ability to cope. All the more so in such stressful times.

I hope, Dear Reader, that you are sleeping well, too. If you’re struggling, here are some helpful tips from the Mayo Clinic.

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: Daniele Levis Pelusi

A Dozen Yellow Roses

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Monday marked our 40th wedding anniversary. A major milestone, indeed.

On Friday, Al brought home a dozen yellow roses to mark the occasion. On our first date 40 years ago, he brought me a dozen yellow tea roses, with the throw-away line that he was supporting his local florist. It was quite the surprising and touching gesture, especially on a blind date back in 1984. While that wasn’t the only reason I married him that December, it certainly helped.

The first year of our marriage was tumultuous. Al’s mother suffered the first of two debilitating strokes, Al became her front-line caregiver with my support, then he caught a serious case of mononucleosis and ended up in the hospital with a ruptured spleen and emergency surgery. He came home from the hospital the day before our first anniversary.

Meanwhile, back in January, a few weeks after we got back from our honeymoon on Cape Cod, I learned that I had some kind of autoimmune disease that was causing my fingers to swell and migrating arthritic pain. It was either rheumatoid arthritis, lupus, or scleroderma, which I’d never heard of.

We made it through that year and many other health crises in the decades, since. We raised two extraordinary daughters. We both worked hard at our careers, and we were both laid off and had to reinvent ourselves professionally, well into middle age. We shepherded our aging parents through their own infirmities and deaths. We continue to be active volunteers in our various communities. We cherish our travel adventures together.

No marriage is easy or perfect. We are very good at driving each other up the wall, across the ceiling, and down the other side. But Al has always been there for me, and I, for him. When we wed in 1984, I worried that the year was perhaps a bad omen. But here we still are, approaching what may actually be an Orwellian era, side by side. To say I’m grateful is a vast understatement.

Happy Anniversary, Al. I love you.

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.

That Time of Year

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It’s darker and colder, and winter is definitely on its way here in New England. Most of the leaves have fallen, and the city has swept the streets, so we no longer drive amidst canyons of leaf piles. Halloween witches and Thanksgiving turkeys have given way to Christmas lights and inflatable snowmen.

My fingers are not happy. As the temperature drops and the air gets drier, my skin becomes more fragile and ulcers appear. Right now, there are five: one on my left thumb, a couple on my right thumb, one on the tip of my right index finger, and one on the tip of my right ring finger. I am, as you’ve undoubtedly surmised, right-handed.

The thumb ulcers are nothing new. I have these perpetually, year-round. In fact, I can’t recall when I last was able to go without bandages on either thumb, mainly due to calcinosis lurking beneath the surface. The index finger ulcer is new, however, due to another calcium deposit. It is healing, slowly. The ring finger ulcer is more like a thin opening in the skin surface due to dryness. It is harder to heal, maybe because the skin is just very delicate.

So, I clean and bandage them twice a day and am very careful to keep them free of infections. It’s such an ingrained routine at this point that I don’t think much about it—except that I’m going through boxes of bandages at a faster rate than normal. For most of the summer and fall, I just had my thumbs to deal with.

There is some judgment involved, however. At what point do I leave off the bandage at night and allow my finger to heal on its own? It’s a real balancing act. If I forgo the night bandage too soon, the ulcer can get too dry and uncomfortable and wake me up. But if I rely on bandaging too long, then the ulcer may take even longer to heal and possibly get larger. I recently weaned an ulcer on my left index finger successfully. I’m working on the right ring finger this week.

I also need to be careful not to overuse my hands. I was reminded of this over the holiday weekend, when I was immersed in a sewing project that required some hand sewing—a frustratingly major challenge, given my resorbed fingertips and all the bandages. The result was an enlarged ulcer on my right thumb. Aargh. At least the project came out well.

Always an adjustment, heading into winter, no matter how many years I’ve lived with scleroderma. So it goes.

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.