Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Taste

Time Out for Family

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This past weekend, five months into the pandemic, we finally got to see our daughters in person, together. Family time has always been important to us, but all the more so now.

Our younger daughter came up from Philly, which was good timing, because as of the first of August, Massachusetts is imposing new Covid restrictions for out-of-state visitors. Our older daughter came out from Boston. On Saturday afternoon, we took a lovely walk at Garden in the Woods in Framingham, Mass., and on Sunday, we were all home for an outdoor supper on our deck, meaningful conversations, and a lot of laughs. Both daughters slept over. It’s been a long time.

Every day we share together is a blessing. I hope the same is true for you and yours. Here are some of my favorite photos from our nature walk. . . .

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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Celebrating my birthday this past weekend, in the midst of a pandemic, was different, to say the least. Not only were we stuck at home, but also it snowed. In April. I cannot recall this ever happening. Cold, yes. Snow, no.

So, I said to Al, “Let’s build a snowman!” He was surprised, because I never suggest anything that could make my hands cold, but he was also an enthusiastic participant.

When I was a kid, I loved making snowmen. I would stay outside in our front yard, rolling each ball of snow, arranging and decorating, until I was frozen myself. Back then, I didn’t care. I have a dim memory of doing this late one afternoon, the snow tinted blue as darkness fell, mittened fingers totally numb, but still feeling joyful in the act of creating.

Of course, the snow has to be just the right consistency for construction purposes, and we were in luck. Big, fat, pasty flakes had fallen all morning, a few inches worth, the kind of wet snow that gloms together into heavy blobs when you scoop up a handful. We headed out the front door and got to work.

With a shovel, Al created a mound for the base. We slapped on more snow globs to round it out a bit, and then I rolled two very heavy balls for the middle and head (needed Al’s help to stack them). We added stones for eyes and buttons. I found a couple of twigs from a fallen tree branch (very windy last week) for arms. Al added what was left of our horseradish from Passover for a nose, and contributed an old baseball cap. Together, we secured the finishing touch—a green bandana for a face mask. And so, in about twenty minutes, “Covie” was complete.

As we worked, a few neighbors walked by with their dog and voiced their approval. I took Covie’s portrait on my phone and headed inside. My mittens were soaked, just like that day long ago, and my fingers icy, but it was worth it.

Other birthday activities included reading a novel, listening to an inspiring podcast, enjoying birthday greetings from friends and family, catching up with my sister on the phone. In the afternoon, we had a Zoom party with my daughters, complete with a cake baked by Al, and an online card game that kept us laughing for a couple of hours. In the evening, we marked the occasion by making contributions to a variety of non-profits that are helping during the pandemic. This felt good. We capped off the day watching a movie online.

Throughout, I was in an upbeat mood. (This was helped by not reading any news.) For a cooped-up birthday during the scariest experience of my 66 years, it was lovely, memorable, and a good lesson in how much each moment is shaped by how we decide to approach it.

Now, if only the pandemic could end as quickly as Covie melted . . .

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.

Mask-maker, Mask-maker, Make Me a Mask

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More than half-way through Passover now, I’m finding the holiday’s food and kitchen restrictions (no leavening, separate dishes and utensils) a fitting metaphor for our new reality. That, and the spread of matzah crumbs throughout our home. I’m also finding the rituals and rules about what and how to cook strangely comforting. Having our mini Seder last Wednesday night via Zoom with two dozen family and friends from across the country was wonderfully uplifting. Sticking with our Passover observance feels like an act of defiance in the face of this pandemic, that it can’t uproot everything we hold dear.

But there is still a lot to contend with, of course. Here in Massachusetts, we are being told to wear fabric face masks when going anywhere that makes physical distancing difficult, like grocery shopping. So, on Sunday, I pulled out my trusty 35-year-old Viking sewing machine and experimented with making masks out of old pillow cases.

I still love sewing, but it has become much more challenging since I had my hand surgery several years ago. Tweezers are an essential tool for threading the needle. I have to constantly be mindful not to reach quickly as I adjust the sewing foot, thread the bobbin or change stitch settings, or I’ll mash what’s left of my fingertips on metal. Then there’s the nuisance of cut threads sticking to my bandages.

Nevertheless, I persisted, using a pattern I’d found online, one magenta-and-pink and one cobalt-blue pillow case, and a few pieces of quarter-inch elastic from my five-decades-old sewing stash. I cut out enough fabric for several masks, but only finished two—in part, because I skillfully managed to sew the second one together wrong side out and had to pull all the stitches, a real challenge for my hands. I made an opening in the back for an insert. From what I’ve read online, coffee filters are considered one of the best options.

Along the way, I discovered a couple of mistakes in the directions. The biggest issue is how long to make the elastic loops to go over ears. The pattern said seven inches, which seems to be standard advice, but that’s way too big for my narrow face. So, a word to the wise: If you decide to sew your own mask, plan on the first one being a prototype that needs adjusting.

Here is a good article from The New York Times that includes everything you need to knows about wearing and making your own mask.

I hope, Dear Reader, that whatever your circumstance, whatever holiday you may have been celebrating or will be, soon, that you are staying safe and well. And if you can’t sew, here’s how to make a mask from a teeshirt that requires no stitching.

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.

It’s Always Sunny in Philadelphia

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This past weekend, I flew to Philadelphia to spend a long-planned weekend with my younger daughter. We had originally intended to enjoy the Art Museum, dining out, and some quality mother-daughter time, to mark her birthday next week. I was also going as her support for a medical diagnostic procedure on Monday. But with the intensifying spread of COVID-19, the decision to travel was complex.

Driving to Philly from our home takes a good six hours. The flight takes under an hour from our local airport, which is a ten minute drive from our house. Under normal circumstances, it’s a no-brainer.

But flying is now fraught with worries about the risks of picking up the coronavirus in public spaces—and spreading it to others. My daughter was quite concerned for my health and willing to postpone my visit. I, however, was not willing to give up so easily.

Ultimately, after conferring with my long-time rheumatologist about my risks of dealing with the virus, and given that I have no coronavirus symptoms, nor have I knowingly come in contact with anyone who has traveled abroad to hot spots, I decided that I would make the trip. I took extra precautions, wearing latex gloves in the airport and on the plane, wiping down my seat belt, arm rests and head rest with disinfectants, not using the tray table. The flight is on a small American Eagle jet, and it was only a third full both ways, so no trouble staying three to six feet away from fellow passengers. No one was notably coughing.

I kept a wide berth from other travelers as I walked through and waited in airports. My daughter picked me up in Philly on Friday, and I sat a safe distance from my congenial Lyft driver on the way to the airport Monday afternoon. (I gave him a good tip, because business is understandably slow.) Al was waiting for me when my flight arrived back home.

Over the weekend, we had a very meaningful mother-daughter visit, with some important conversations about what’s happening and what could happen, a talk that could only occur in person. We ate in, took a sunny walk around the Art Museum (which was closed) and along part of the Schuylkill River Trail, did some sewing and crafts, and binge-watched Netflix series. I took her to her medical appointment, and, thankfully, all went well. Given all the uncertainty about travel in coming weeks and months, it was all the more important to visit now, when it was still possible.

Back here in Massachusetts, schools and universities are closed, restaurants and bars shuttered except for take out, and many people are now telecommuting. Public gatherings are restricted to no more than 25 people. My synagogue is closed, though conducting daily minyan via Zoom. My dentist is closed except for emergencies over the next few weeks. My weaving studio is on hiatus. My German classes are canceled this week and shifting to online next week. My gym is closed. Grocery stores and pharmacies are exempt from these restrictions, so far. Al’s work has shifted to a hybrid of work-from-home and in-person visits to his social work clients. I am well-accustomed to working from home, so my daytime schedule is status quo. Others are not so fortunate.

I’m sure that you, Dear Reader, are experiencing similar disruptions. None of us knows what is next. All I know is that I’m glad I went to see my daughter while I still could, and I’m glad I’m back 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.

Chopper Talk

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It is most delightful to have my molar back. As in my back right lower jaw, which has been missing that tooth since last April, when a painful, resorbing root sent me to my periodontist for an extraction. No fun, that. Nor has it been a treat to eat with a large gap in my teeth in the grinding department. I’ve had to be extra careful for months to thoroughly chew my food, mostly on the left side, to be sure I can actually swallow safely.

Ah, the joys of scleroderma dental problems. And esophageal dysmotility.

But my new post and crown, inserted on Monday, fits perfectly. It’s an odd feeling. What is that thing in my mouth? Oh, it’s a molar! No longer can my tongue wander into the gap for a little exercise. No longer must I consider whether to mush food with my lower gum on the right or chew on the left. No longer does my right cheek sink in ever-so-slightly over my missing tooth.

Fitting the crown and inserting it proved to be the usual challenge in my tight mouth. A month ago, I had to help the dentist and his assistant insert the molds for my upper and lower jaw, because it was easier for me to figure out the right angle than for them to try without stretching my lips to intolerable tension. Yesterday, it took more lip contortions and some deep breathing on my part as my dentist screwed in the post for the crown—not easy for either of us. But it’s done, and it feels amazing.

Turns out, my dentist told me, he had just needed an extraction himself of one of his front teeth. He has a partial, temporary bridge, so you can’t tell, while he traverses the long process of implants and replacement. I found this encouraging, not only because he uses the same periodontist that he’s sent me to (definitely a good referral), but also because one of the next teeth I may lose due to scleroderma resorption is also a near-front tooth. We’ve been monitoring it for years.

Hopefully, it will continue to take its time. But it’s reassuring to know that, whenever the inevitable comes, I won’t have to look like Alfred E. Newman for months until the procedure is complete. Meanwhile, I will enjoy having a full set of choppers. Carpe diem—or should I say, carpe dente? Maybe not. I don’t want anyone seizing any more of my teeth for as long as I possibly can.

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: Stefan Steinbauer