Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

mindfulness

Serenity Break

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I am way over the top with too much stress in the world. I suspect you are, too. So last Friday, I was very glad to attend a meeting at a beautiful Massachusetts Audubon sanctuary. This was a gathering of people who are working on ways to mitigate climate change and engage our communities in sustainable, resilient practices, not just in our home cities and towns, but for our entire county in Central Massachusetts. Always good to get together with good-hearted, civically involved folks who are committed to improving our neck of the woods.

But the best part of the meeting was the setting. You don’t need to drive far here to get out of the city and find some beautiful scenery. And in this case, grazing sheep.

So, Dear Reader, I share with you this picture I took, to remind myself of the wonderful, calming a-h-h-h I felt, being there. Hope it gives you a window of calm, too.


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.

Taking a Break

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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

The Scam I Almost Fell For

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Bad actors are everywhere these days. Last week, I finally was able, with some tech support, to reinstall my computer virus scanner, run a sweep, and reassure myself that I did not download a virus a few weeks ago when I accidentally opened one of those fake alert screens that scream at you that you absolutely must save your computer by calling or clicking their blinking red link. (I immediately turned off my computer).

This weekend, the scammer came by phone. I saw a call from my credit card company on my cellphone and answered it. A man’s voice inquired if I had recently made a $1,300 charge on Amazon, which I had not. It was supposedly made by someone in Dallas. He needed me to confirm my full credit card number (he listed the first six digits) to cancel the charge and give the last four digits of my Social Security number.

As I was getting my card from my wallet, a little voice in my head piped up. Why would he need my credit card number, let alone part of my SSN? I’ve dealt with my credit card company’s fraud unit before, and they don’t work this way. Also, on the few occasions when there has been a fraudulent charge on my account, they first contact me by text, and all it takes is a confirmation of the error to deny it. Plus, when I have had to call them to cancel a lost card, there is always noise in the background, as if the person works in an open office space. No background voices on this call. Then there was the phone number I was speaking to, a Boston area code, rather than an 800 number.

So, I asked the guy on the phone, “How do I know you work for [my credit card company]?” He got irritated, then downright mad. He claimed that the person in Dallas had actually used my cell phone number to call and try to get the charge approved. This made absolutely no sense. He said if I didn’t act now to give him what he requested to cancel the charge, I’d have to wait until Monday to reverse it. This also made no sense, since my credit card company’s fraud unit is available 24/7. I told him I would not give my credit card number over the phone and was going to end the call. His ultimate retort? “I’m going to hang up in your face!”

So, there!

After this weird exchange, I blocked the number on my phone and checked my credit card transactions online to see if there was any pending $1,300 charge. There was not. Then I called the company’s fraud unit to double-check, to let them know about the scammer, and to give them the phone number that had shown up on my cellphone. The woman I spoke with was professional, polite, and appreciative. And there were other folks in the background.

Why didn’t I hang up right away? I had been trying to take a nap when my phone rang and was not all there. The caller ID said the name of my credit card company. And he did suck me in with his claim about the $1,300 charge. Thank goodness I woke up enough to realize what was going on.

So, once again, I share this adventure as a public service. Bad actors are everywhere these days. Be prepared.

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: Gratisography

Delayed Reaction

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A week ago Friday, I checked an item off my health care to-do list when I got my pneumonia vaccination. For older adults, mine was Pfizer’s Prevnar 20, which stands for Pneumococcal 20-valent conjugate vaccine, in case you’re wondering. Basically, it covers a slew of bacterial strains, and as of current practice standards, I won’t need another pneumonia vax, ever.

It barely hurt, and I only had minor aches in my left shoulder for maybe 48 hours. No big deal.

Meanwhile, I’m still nursing nasty multiple ulcers in my left ring finger that have cost me a nail and considerable discomfort for at least six weeks, now, even as it slowly heals.

Thursday evening, after my shower, I noticed an odd, blotchy rash on my upper left arm. At first, I thought it could be hives, which I occasionally get from taking a shower. But the rash did not clear. In fact, it seemed to be spreading a bit.

Now, I have a history of cellulitis when I get infections in digital ulcers. Haven’t had an episode in quite a while, but this was my immediate concern. If you’ve ever dealt with this kind of superficial skin infection, then you know that it can get very dangerous if left unattended, with the potential, if it gets into the bloodstream, of causing sepsis.

Typically, when I’ve developed cellulitis, it spreads in a thick, red line from the ulcer up my forearm. I once had the experience of watching it spread at a rate of about an inch an hour. That landed me at the infusion clinic of my hospital, getting IV antibiotics.

So, even as this rash was in no way connected to my ulcer, I was still worried—indeed, worried enough to have trouble falling asleep, and rising to check if it was spreading several times. That is, until about 2:30 in the morning. I had traced the outline with an eyeliner pencil about an hour earlier and the rash hadn’t really moved. So I took a minocycline pill, which I always have on hand, and convinced myself to get some sleep. No way I was going to the ER to deal with it unless it seemed aggressive.

When I woke up Friday morning, there was no change in size, though the rash had filled in and was definitely warm. It suddenly occurred to me that this might be a reaction to the pneumonia vaccine. During Covid, I had twice developed a rash in my injected arm from the Moderna vax, though never from Pfizer. But this was a totally different shot. Sure enough, I found a few research articles online about delayed reactions to the Prevnar shots, though it’s quite rare (of course—I always get rare complications).

At 8:00 I called our geriatric practice and explained my concern, that I needed someone to determine if it was cellulitis or the vax reaction. I was prepared to spend half a day at Urgent Care, if necessary. So, here’s why I love our geriatric providers: they make house calls. And, it turns out, that even as our NP was not available, they could send a mobile urgent care team to our home. Which they did.

The team was great, and they confirmed my second hypothesis, that I was reacting to the shot, even as the rash was several inches below the injection site. The solution? Zyrtec. Which I started that day, and the rash is subsiding.

To say I’m grateful is an understatement. Fortunately, after four-plus decades of living with scleroderma, I know enough to know what to watch out for and how to get help. And I’m lucky to live where excellent help is available, right in my own 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.

Image: Louis Reed

A Break from the News

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This weekend, my dear husband persuaded me to get out of the house on a bitter cold Sunday afternoon for a visit to our art museum’s wonderful annual Flora in Winter exhibit. It’s always fun to see how area florists interpret artworks, and given the flood of horrid headlines here in the U.S. of late, the exhibit was all the more refreshing. Seeking out beauty is essential these days, to remind myself what matters.

Here are some of my favorites. Enjoy!

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.