Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

body-mind balance

The Things We Take for Granted

· · 3 Comments

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

· · 8 Comments

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

· · Leave a Comment

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.

Prepping

· · Leave a Comment

Today I get my second Moderna dose. On Monday, I tried to remember to keep drinking fluids, which is supposed to ease side effects. We shall see.

I’ve also been prepping for the aftermath. Friends and family who’ve had the Moderna vaccine report a whole range of reactions, from some arm pain to brain fog to extreme fatigue to headaches to fever, lasting a day or so. I’ve cleared my calendar for Wednesday, hoping for the best but leaving space and time to deal with a stronger reaction. After my first dose, I was very tired for several hours after I drove home from Boston. We shall see.

Then there’s Passover prep. The first seder is Saturday night this year, and there’s still a lot to do between now and then. We’ve started our house cleaning, shopped for dry goods and dairy foods, and planned menus for the week of Passover. Al will finish the bulk of the cleaning this week and the rest of the shopping for perishables, but I still have client work pending and other to-dos to complete.

I’ve revised the Haggadah that I wrote last year, and we’re getting organized to have a Zoom mini seder with family on the first night. But there is still more cleaning and all the cooking to do. So I’m hoping that my second dose won’t throw a monkey wrench into the works. We shall see.

How is this week before Passover different from all other weeks before Passover? We shall see.

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: Aron Visuals

Brain Fog

· · 2 Comments

I forgot to write my blog for Tuesday morning. Completely slipped my mind on Monday, my usual blog-writing time, because I didn’t write it down in my Monday To-Do list. Usually, I organize myself in my bullet journal with a task list for the week, which I then break down for each day. But I’ve been busy with a lot of deadlines hitting at once, and I didn’t do the weekly task list, so I didn’t remember to write my blog.

Which is why, if you’re used to seeing this pop up in your in-box on Tuesday, it wasn’t there. Easy enough to “write it off” to aging, of course. But I had an interesting conversation with my Boston Medical rheumatologist on Tuesday that made me wonder. I was telling him how I feel that my memory just isn’t the same (this was before I realized I hadn’t written my blog, which gave me today’s theme . . . ).

Word-finding when I’m stressed has been hard ever since I hit menopause years ago, so I’m used to that. And we all know what it’s like to go into a room to get something and forget what it was. But now I’m finding that I can think of something I want to do and go to write it down (to remember), but the actual act of writing it makes the idea vanish for seconds or even minutes, sometimes. This is not only frustrating, but for someone who writes for a living and for my art, it’s upsetting. Fortunately, when I am thinking at the keyboard, the words continue to flow easily onto the screen.

Long-term memories are also getting harder to retrieve. Some of this is age, of course. But my maternal grandmother used to tell me stories from her twenties that were vivid with details. I had the same capacity for years, but now it just seems harder to recall long-ago details.

My rheumatologist tells me that brain fog is common with autoimmune disease. In the forty years I’ve had scleroderma, I never knew this. (Or if I did, I forgot!) Some of this has to do, in my case, with how my circulatory system is just not as efficient as it used to be due to the disease, so my brain isn’t as well-profused by blood. I also have Sjögren’s Syndrome as a secondary diagnosis, which causes dryness in my eyes, nose, and mouth, and apparently can also cause brain fog.

I haven’t changed medications in quite a while, other than eliminating a few that weren’t really helping me and cost way too much under Medicare. So this isn’t a reaction to drugs.

What to do? It comes back to the basics: get enough sleep, eat a balanced diet with foods high in omega-3 fatty acids and antioxidents, and exercise. I’m pretty good at the first two, and really need to improve at the latter. Over this past week, I barely got outside because of the cold. So on Tuesday afternoon, after my telemed call with my rheumatologist, I took a brisk walk.

A few hours later, when I finally wrote up my week’s To-Do’s, I remembered that I hadn’t written my blog. So, here I am, a day late. But at least I got here.

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: Phillip Belena