Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

mindfulness

Gone Writin’

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For six-and-a-half years, I’ve been working on my novel set in World War I. And this year, I finally carved out five days to sequester myself near the shore and focus on what is now the eighth round of revisions. Here’s the view a short walk from my little Maine cottage.

More next week. I hope you all are pursuing your dreams, too. It’s never too late . . .

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 Things We Take for Granted

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I updated my computer on Monday. That is to say, I transferred data from my six-year-old iMac to my new iMac, so that I could give my old iMac to Al, because my really old iMac that he was using for several years finally up and died. It was time for an upgrade, anyway, and so I made the business investment. I’ve favored Apple computers for more than a decade, now, not only because they’re so intuitive, but also because the keyboard is very easy on my hands. Any other computer keyboard feels like I’m banging on an old manual typewriter—that is to say, painful.

Things did not go smoothly. Following Apple’s instructions, I updated the operating system on my old iMac to the latest version before trying to transfer data between the two machines. But the new iMac, to my surprise and annoyance, did not have the latest OS version. So I had to first update the new iMac.

Issues arose, so I spoke with a very patient Apple tech support guy for at least an hour, trying to get the two machines to speak to each other. At last, the data transfer began successfully. Expecting it to complete overnight, I went upstairs to bed. Shortly after I woke up Monday morning, I checked progress. My old iMac had shut down 12 minutes before the multi-hour transfer process had completed. Back to Square One.

And so, I started the process all over again, with more Apple tech support. My biggest issue, other than tossing my entire morning out the window, was that I had to run a Zoom meeting at noon, and the estimated time for the data migration to complete was about five hours.

My only other option to run the meeting was my aging MacBook Air, which has not worked properly for at least a year because its memory is clogged up (hmmm, sounds familiar). So I asked the tech gal for help with that. She ended up handing me off to one of their senior tech gals, who spent another hour with me trying to free up memory. We never could figure out the basic issue, but I was able to meet my Zoom deadline.

I have to say that Apple support guys and gals are great. Knowledgeable, patient, and really try to help you solve the problems. A good thing, because the next issue arose when I tried to print from my now up-and-running new iMac, and my printer wouldn’t respond. Searching for info about the printer, whether it needed a new printer driver, etc., etc., only confused me more. So I called Apple support once again.

This time, after checking all the obvious stuff (so I thought), the tech support gal asked me if my printer was on the same wireless network as my iMac. Lo and behold, the WIFI had disconnected when I had unplugged the printer and plugged it back in, in the process of prior finagling with all the plugs and wires involved in the data transfer. I was able reconnect the printer to the WIFI and . . . it worked!

So, other than some more annoying app housecleaning, I am now writing on my new iMac with pleasure. And here comes the obvious conclusion: We’re so dependent on our computers. They are amazing tools when they work as intended. They are utterly frustrating when they don’t. If I’d been smarter, I would have set aside an entire day to make this transition, knowing that something would inevitably go wrong.

But these are problems that come with the privilege of being able to afford a top quality desktop computer—even as it’s essential to my work as a writer. I recognize this. I’m very grateful that I can do this. And I hope I won’t need to do it again for at least another six years.

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: Wilhelm Gunkel

And Then the Clouds Lifted

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Sunday was my 67th birthday—or, as my eldest put it, the 33rd anniversary of my 34th. Sixty-seven doesn’t seem old anymore. While my body certainly doesn’t work as well as it once did, pre-scleroderma, and my memory is no longer as sharp, I don’t feel old. Wiser, I hope. Seasoned, certainly.

To celebrate that milestone, and the fact that both Al and I are now fully immunized against Covid (at least the original version), we spent the weekend in the White Mountains of New Hampshire. Decades ago, when we were first married, and later when our daughters were very young, we used to camp there for our summer vacation. I haven’t been back, since.

My inspiration for the trip was to see the stars from the Kancamangus Highway, which runs through the White Mountain National Forest. There are no interfering lights at night, and I can still recall the spectacular view from a visit more than 30 years ago. The weather, however, had other plans. It remained overcast throughout our trip, the sun finally breaking through on Sunday afternoon as we drove home.

But the day’s diffuse light cast its own spell, subtly revealing details otherwise missed. From Laconia’s lake shores to the Lincoln Trailhead in the White Mountain National Forest, from the Cog Rail part-way up Mount Washington to the Basin off the Franconia Notch Parkway, we immersed in rejuvenating beauty. As I reconciled myself to a birthday mountainside view shrouded in mist, the clouds suddenly lifted and we could see 80 miles. The perfect gift, and metaphor, after a long, long year.

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.

Unfurling

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This past weekend, pastels proliferated. The temperature soared to mid 70s F, and Nature saluted with pink cherry blossoms and lemony forsythias, lavender violets and purple hyacinths. Within a few hours, nascent, chartreuse leaves unfurled to greet the sun. Glorious.

I’ve always loved spring in New England, when it finally arrives. Even as temperatures stutter for a few weeks in April, sometimes into May, the longer daylight hours and luminous garden palette lift my spirits. Watching the tree canopy expand each day never ceases to fascinate. Even the yellow pollen that will soon dust car windshields is a reminder of renewal.

All the more so as we emerge from Covid, step by cautious step. With vaccinations increasing every day here in the U.S., I’m beginning to feel my optimism reviving, too.

I got a real boost last Tuesday, the day I was fully immunized, when I finally got my hair cut again after a four month hiatus waiting to be vaccinated. It had definitely gone wild. Every morning, when I looked in the mirror, I was reminded of Albert Einstein. But given that my hair was longer than it’s been in decades, I decided to ask my stylist to shape it a bit fuller this time. After all, might as well make the most of it.

She did. I was so happy when I left the salon, I felt like a new woman. That mood carried me for the rest of the week and still lingers. Carpe diem.

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.

Aftermath

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One week past my second vaccination dose, one week to go until my COVID-19 immune response is full bore. Here’s how it went:

Getting the shot was a breeze. I found parking right away, not always guaranteed at Boston Medical, and there was no crowd at the clinic. A trainee was working with the nurse who administered my shot, and she engaged me in conversation, so I didn’t even realize I’d received the jab. My nurse recommended taking a photo of my CDC vaccination card and storing it in a safe place as documentation. I overheard another patient saying she planned to get hers laminated, which I thought was a good idea. Everyone was upbeat and wished me well. Very professional.

I drove home without a problem, ate some lunch and even did a little work at my computer. Then, the fatigue fog rolled in, not on “little cat feet” à la Carl Sandburg, more like a herd of elephants. I shut off my iMac, went upstairs, lay down in bed, and binge-watched Downton Abbey for much of the rest of the day. And I slept.

By Wednesday, my joints were flaring. No fever, and I was able to get a few hours of work done. But sitting at the computer became impossible by early afternoon. And my morning energy dissipated like mist. Fortunately, I had cleared my calendar in anticipation of a reaction. Back to bed and more Downton. It has been decades since I’ve spent that much time in bed watching TV because I wasn’t feeling well.

Throughout the day, family and friends kindly checked in to see how I was faring. By evening, about 30 hours after I’d received my dose, I felt the aches and fog lifting. I had done my best to keep hydrating, as the nurse had recommended, so I’m sure it helped some, but I also know my body well, and it always takes time for my system to clear. Just a waiting game.

I slept well again. On Thursday morning, I felt like myself, although I noticed that my left arm felt warm. When I checked in the mirror, I had a huge rash that stretched from where I got the shot to a few inches above my elbow. A little online research turned up a new term, “Covid arm.” This is a non-serious reaction to the shot, more common with Moderna, that can occur up to a week later, on average. Mine was only very mildly itchy and responded well to cortisone cream. I also took a Benadryl tablet that evening, which may or may not have had an effect.

Five days later, the rash is almost gone. I’m looking forward to next Tuesday, when I’m fully immunized. Months ago, when the Covid variants surfaced, I rescheduled my haircut to wait until I was fully vaccinated. Thanks to serendipity, I picked next Tuesday. Taming my four-month-long mop will be a great way to celebrate.

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: Chris Barbalis