Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

stress

What Next?

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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

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

Rough Patch

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So, what I thought was “just” allergies last week turned out to be more complicated. When our geriatrics nurse practitioner came to our home for a check-up last week, she carefully listened to my lungs and informed me that I had not developed bronchitis, as I’d thought. No, I had pneumonia.

What? That was not on my bingo card. Glad she caught it before it got even worse. I started antibiotics that afternoon, and within a few days I was starting to feel like myself again. Thank goodness, because I was getting pretty worried about where all this was headed.

Also, on Monday night I had my acting class performance—first time on stage since elementary school, a scene from Tennessee Williams’s The Glass Menagerie. We’ve been rehearsing for months, and I sure didn’t want to have to miss it. (I’m writing on Monday afternoon, so fingers crossed all goes well.)

Next on the medical agenda is a tooth extraction on Wednesday and prep for another implant. So, yet another reason I need to get past this whole respiratory episode. The tooth is definitely failing, getting more sensitive, so it really can’t wait much longer.

Then on Thursday, it’s back to the Wound Clinic to check on my slowly healing ulcer. It’s improving gradually, but needs a lot of TLC.

When all that’s done, I need to get my spring Covid vax, I hope on Friday, if all goes according to plan. We’re traveling again soon, so all this has to be wrapped up by the end of the week.

Meanwhile, Al caught whatever I had that wasn’t allergies, and is doing better but still recovering.

Of course, it could always be worse. But this has been one rough patch. Here’s hoping we’re both finally on the mend.

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: Nik

And Just Like That . . .

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For weeks now, my bonsai, a Brazilian rain tree that I have been cultivating for nearly four years, now, has been shedding leaves. While some of this is to be expected—it’s a deciduous tree, after all—it just seemed out of the ordinary. Nearly every morning, I’d discover more yellow amidst the emerald green.

Was I watering it too little? Too much? Was my bonsai upset with the cold weather? The heat pump? Had I lost my touch? I had made sure to give it a little fertilizer to help it through the dark days of winter. A mistake?

Then, last Tuesday, all of a sudden . . . tiny new leaves! A Brazilian rain tree is characterized by multiple, symmetrical leaves that fold up like books at night. These newbies appeared as if a little green library was sprouting. And each day, since, the new leaves have grown larger, opening up to sunlight. It seems my bonsai was communing with all the plants outside that have begun to sprout their own new leaves, in synchrony.

Every spring’s rebirth is a miracle—and a reminder of Nature’s intense imperative to replenish and grow, despite the odds. It’s such a great gift, and a welcomed assurance that even when our world is so chaotic, life rebounds.

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.

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