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Reflections on the Messy Complexity of Chronicity

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Not the Weekend I’d Planned

Evelyn Herwitz · January 14, 2025 · 2 Comments

On Thursday, I set out for Philadelphia to spend a long weekend with our younger daughter. Never got Covid from Al, thank goodness, and he was on the mend. There’s no direct route from our Fair City to Philly, and it’s too long for me to drive, so I scheduled a combination of Greyhound and Amtrak. My nine-hour trip was relaxing and went off without a hitch—despite the Polar Vortex that had engulfed the Northeast for several days.

We’d been planning this long weekend for months—visits to art museums, dinners out, crowned by Sunday in New York City, visiting one of my favorite museums and having a special lunch before we went our separate ways back home. The weather forecast looked great for Sunday, warming into the low ’40s.

Friday in Philly was very cold, but we enjoyed a visit to the Woodmere Museum, which features local artists and had some wonderful works on exhibit. Later, I bundled up and we walked the short blocks to a lovely restaurant for dinner. We came home and sat up late, having a long, deep mother-daughter conversation.

The plan was similar for the next day. But by about Noon on Saturday, I started feeling off. As in, I felt like I might faint. Within an hour, I was lying on the floor in the bathroom, plagued by the runs and nausea. My daughter was a wonderful support and pegged the likely cause, a norovirus, which has become rampant this winter season. I rarely get stomach viruses, and I haven’t thrown up in decades, but this was another beast altogether.

My daughter went out to get some electrolytes and easy-to-digest foods, but one sip of the electrolytes had me retching in the bathroom. Over several hours, my GI tract emptied out and I was able to get some rest in bed. But by about 4:30 in the afternoon, I was still feeling off, so I called my PCP’s office back home and spoke to a triage nurse. Was there anything else I should do? After ticking off a full range of symptoms, most of which I did not have (no, this wasn’t a heart attack), she still felt I should go to Urgent Care or an ER, given my other medical conditions, just to be sure I would be okay.

And here is where the American medical system falls short. Given that it was past 5:00 p.m. by the time I finished the call, all but one Urgent Care in the area was already closed. The latter was supposed to be open until 8:00 p.m. I tried calling but got voicemail. So we drove there, anyway, since it was only five minutes away. And it was closed. No explanation, just a sign on the door that said they would be open again Sunday at 10:00 a.m. We were near an ER, but I really did not want to go, because it would have been at least a six-hour ordeal.

So we decided to go back home and see if I could actually hold down some ice cubes or even a little water. If I threw up again, we’d go to an ER. Sucking on an ice cube made me feel woozy again, so we looked online to see if there was another Urgent Care not too far away. We found one, a 20 minute drive, across the New Jersey state line, that was open until 8:00 p.m. But I wanted to be sure they would accept my insurance.

This time, I got a human on the line, who had to check if they would take my Medex supplemental insurance from Blue Cross/Blue Shield of Massachusetts. The answer was no, they didn’t take Medicare supplements, only Medicare Advantage plans.

Now, the problem with Medicare Advantage is that, for someone with a complex medical condition, these plans have a lot of restrictions on in-network physicians. Which is why I’ve held onto my traditional Medicare and Medex plan. This could all become more difficult under the new administration in Washington, which is a deep concern, but that’s a subject for future posts.

In any case, we decided to wait and see how I was doing before going to an ER. I was concerned that I’d run into the same issue with out-of-state insurance, and there was no point risking a five-figure bill for an ER visit unless it was really necessary. I also felt that the advice I got from the triage nurse was overly cautious, so she would not be liable for underestimating my risk.

Fortunately, the gamble paid off. Over the next few hours, I was able to drink nearly a cup of water, and my gut settled down. I slept, with a couple of interruptions, for ten hours. I was able to tolerate Tylenol and antacids before bed. By Sunday morning, I had an appetite again, and by Sunday evening, though still tired, I was feeling like myself. My daughter was doing well, and with any luck, she’ll dodge the bullet of this nasty, fast-moving virus.

We spent the afternoon binge-watching Queer Eye. I took a break to walk to the nearby supermarket and pick up some eggs. I was tired when I got back, but okay. I scheduled a flight home for Monday afternoon, since I was not up for any more long train-bus rides.

I still don’t know how I got this bug. Maybe from public restrooms in bus/train terminals? Or maybe I picked it up before I left home? At least it was short-lived, which is a hallmark of noroviruses. It ruined our wonderful plans, but we still had a meaningful, loving visit. And in the end, other than feeling better again, that’s all that matters.

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

Covid Redux

Evelyn Herwitz · January 7, 2025 · Leave a Comment

Just in time for 2025, last week Al came down with Covid. He was feeling off Tuesday afternoon and worse by Wednesday evening. What began as a winter head cold deepened into a rough cough, so on Friday he went to urgent care to rule out pneumonia. His lung X-ray was clear, but a Covid test was positive.

We were both stunned. We’d been vaccinated back in September before our trip to Israel and Switzerland, and neither of us had any issues abroad or since our return. I’ve read about the uptick in Covid cases. Still, this one seemed to come out of nowhere.

Paxlovid is helping Al significantly, and his health is, thankfully, improving, although Covid is leaving him easily fatigued. As for me, as of Monday afternoon, I’ve consistently tested negative and have no symptoms. Hope it stays that way, and that my vax still protects me.

The last time I had Covid was in April, just in time for my 70th birthday. That was the second time I contracted it. I really don’t want a third bout. When it comes to this nasty virus, three is certainly not a charm.

So, if you have not yet gotten a Covid vax or a flu vax, for that matter, I hope you’ll do it ASAP. As we head into that inevitable winter season of closed windows and indoor crowds where viruses flourish, there’s all the more reason to be protected. While Al’s experience raises questions about the vaccine’s effectiveness after four months, I’d still favor the odds of it working.

So far, for me, so good.

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: Evgeni Tcherkasski

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Filed Under: Body, Mind Tagged With: COVID-19, vaccines

Resolute

Evelyn Herwitz · December 31, 2024 · 2 Comments

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

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Filed Under: Body, Mind Tagged With: anxiety, body-mind balance, mindfulness, resilience, stress

Gullible

Evelyn Herwitz · December 24, 2024 · 2 Comments

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

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Filed Under: Mind, Sight Tagged With: anxiety, mindfulness, scams, stress

Sleep Tight

Evelyn Herwitz · December 17, 2024 · 2 Comments

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

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Filed Under: Body, Mind Tagged With: body-mind balance, resilience, sleep, stress

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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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