Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

mindfulness

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

· · 1 Comment

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.

Order Out of Chaos

· · Leave a Comment

As the pandemic surge approaches, we have been preparing for Passover—a deep and bitter irony, given the role that the Ten Plagues play in the Exodus story, the Seder’s focal point. Over the weekend, I wrote a condensed version of the Passover narrative that we’ll share with family and friends across the country Wednesday night via Zoom, in place of our traditional festive gathering. Certainly not the same as being together, but making the best of the situation.

And so, we’ve been cleaning the house, Al and I. We had to pause our biweekly cleaning service, given the risks of sharing unwanted germs, and sent them a check to help tide them over. Al’s done the heavy work, and I’m in charge of dusting. So long as I’m very careful and wear cotton gloves, I can avoid damaging my fingers. But I’m slow, as a result, and we have a lot of tchatchkies.

Still, there is something about revisiting all those little statues and knickknacks, remembering where we got them and when, and arranging them exactly as I want. The house looks clean and orderly, more so than usual, because we’re the ones doing the work and paying attention to dust hiding in nooks and crannies. We finally put away all the books that had been cluttering the living room coffee table, leaving a manageable stack to be read. I shipped a box full of electronic cords, cables, CDs, and DVDs to a recycling center in Washington State that was still taking donations.

It feels good to get ready for the holiday, not the usual dreaded chore. Life is so strange right now, seemingly normal in some ways and totally upside down in others. Cleaning and organizing our home is one way to regain at least some sense of control, and keeping our religious traditions means that COVID-19 is not in charge of what we do. It’s also a wonderful way to connect with those we love, even if we can’t see them in person this year.

All this is all the more important as the number of cases here in Massachusetts increases exponentially. Our city is well prepared, and the Commonwealth is undertaking a first-in-the-nation initiative with the global NGO Partners in Health to track contacts of people who test positive for COVID-19, in an effort to detect infection hot spots and contain the virus. I find this reassuring.

And yet. A couple of weeks ago, when I took my walk around the neighborhood, I overheard folks chatting about someone who knew someone who got the virus when their kid came home from Spain. A few days later, I passed by a group discussing personal experience with having had it and gotten over it (fortunately for the couple, it sounded as if they’d had a mild case). Yesterday, on my walk, for the first time I saw an ambulance outside someone’s house. I haven’t heard sirens in the neighborhood, but I know that’s inevitable.

The weather as I write is sunny and mild. Forsythias are blooming, leaves on the trees are just barely visible, and miniature daffodils brighten our rock garden with a splash of gold. Pandemic or not, spring is here. For that, for every morning that I awake with an easy, deep breath and know my family and friends are well, I am grateful. I hope you are safe and well, too.

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.

Coping Mechanisms

· · 2 Comments

I hope this post finds you and your loved ones safe and well.

I’m grateful to report that the only inconvenience I’m experiencing at present is damp, chilly weather that has kept me from taking a walk over the weekend. This should be my greatest problem in a pandemic.

It even hailed for about ten minutes on Sunday night, pea- to marble-sized chunks of ice that flung out of the sky, hammering our kitchen skylights and bouncing on our deck. As a trained weather spotter, I dutifully reported in to the National Weather Service office in Taunton, Mass., and the guy who answered could even hear the racket over the phone.

Nature has been teaching us a lot of hard lessons lately about unpredictability, risk, and our precious, fragile lives. When I wake up in the morning and take a deep breath, I’m grateful that my lungs fill easily, painlessly; that my temperature is normal; that Al here at home and my adult daughters in their respective cities are all well.

But sleep does not always come easily or consistently. I woke too early Monday morning from some kind of dream about COVID-19, wondering why Prince Harry and Meghan would move to LA right now. Doesn’t Canada have a better health care system? (Of course, with their wealth, health care costs are not an issue.) Just one measure of how too much news is penetrating my brain.

So I have been trying to figure out a way to cope with this pandemic and fears about my family’s health, for the long haul. I cannot keep riding the anxiety roller coaster, one day feeling calm and absorbed in my work or other activities, the next, waking up to remember we’re still stuck in this unfolding horror story and imagining the worst.

It’s simply not good for my health. When I first developed scleroderma more than 35 years ago, I was coming off a divorce, anxious and stressed and depressed, pumping far too much adrenaline into my system for too long. I have no proof, but I believe that months of fight-or-flight response triggered the onset of my disease. Research indicates that my hunch is a good one.

So, here’s where I’m at, as the pandemic continues its inexorable spread:

I have a great writer’s imagination. It is not helping me right now. I have to trust that I will be able to deal with whatever COVID-19 dishes up for me and my family as best I can. I can’t anticipate it, because there is no way to know what may or may not happen. I’ve done my due diligence research about local resources and what first steps to take if one of us gets sick. I’m following our city’s response team briefings, as well as our governor’s, and reliable media resources. I listen to Dr. Fauci and am very grateful for his presence.

I need to go on a COVID-19 news/social media diet and restrict my reading, watching, and listening to certain times and time limits during the day. Still struggling with that one, but I find myself adjusting to the awareness that the numbers are just going to keep going up for a while. I can’t change the reality of our present crisis. I can only do my part to follow the public health guidelines. So staying informed is important, but the value-added of each additional report about the latest scary detail is not adding to my understanding or well being.

Meditation really helps me to calm down. So does writing. So does listening to my favorite music. So does visiting online with family and friends, or writing longer emails to people I haven’t seen in a while, or calling on the phone. Walks are a necessity, as long as the weather permits.

When I have time in the evenings, I’m removing old childhood photos from Herwitz family albums to be digitized, and musing about how little we know about how life will turn out. One of my favorites is a portrait my father took of me and my mother when I was about 15 months old. I’m staring into the camera with an annoyed glare, probably tired of the photo shoot, as my mother holds me in her lap. There’s a bandage on her finger from where I had bitten her—a story she loved to tell, to rib me.

I’m usually smiling in most of those childhood images. But in that one photo, there’s a feisty determination in my eyes that gives me encouragement. It’s a quality that has served me well in learning to live with scleroderma—with an emphasis on live. It’s as if I’m telling myself, across the decades, that I and my loved ones will find our way through this, too.

God-willing, we all will. Stay home, stay safe, and keep washing those hands.

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 New World Order

· · 4 Comments

It’s Monday afternoon, and I’m watching huge, fluffy snowflakes fluttering to earth outside my window. They land gently, without a sound, the perfect antidote to the frightening headlines on my news apps and comments in my Twitter feed.

I should stop reading it all, I know. But I feel compelled to keep up with the latest COVID-19 developments. It’s like we’re all trapped in this horror movie, but we can’t close our eyes. We need to know how it ends. And we can’t leave the theatre.

I find solace in meditation, my writing, helping my clients to communicate their efforts in response to the pandemic, connecting with family and friends, studying for my German classes (now online), watching videos of people in Italy making music from their balconies.

And I’m finding workarounds to being mostly home bound. Last Friday, instead of driving into Boston for a long-awaited first appointment with my new rheumatologist at Boston Medical Center, I made an arrangement with him via MyChart messages to speak by phone. The Rheumatology Department is in process of switching over to telemedicine, but not there quite yet.

He was very generous with his time. We spoke for 40 minutes about a wide range of my concerns, not only my health status, but also about social distancing and risks of the virus for other family members. As for me, he said my age is a greater risk factor than my scleroderma. This varies, of course, for each individual, but in my case, my lung involvement has remained a lesser issue, thank goodness.

Earlier last week, my hand surgeon’s office checked in about my upcoming procedure to remove a bothersome calcium deposit from my right thumb. We agreed to postpone until June, earliest. I’ve been living with this annoyance for at least a year. No point in doing it now, even in an outpatient surgical center, as planned.

Sleep does not always come easily. It seems that I get a good night’s rest every other night. It’s hard to turn off the worries about what the future holds. But at least I’m not driving anywhere long distance right now, which is riskier when I’m fatigued.

Instead, I’m trying to walk outside as often as I can. Over the weekend, I took a long walk to our city’s oldest park, to clear my mind and get some exercise. It was crisp and sunny. On any normal weekend afternoon, with such good weather, the park’s playground would have been crowded with kids and parents. Instead, only one couple with a small child played briefly on a swinging saucer. Traffic was light. A handful of people walked or jogged around the park’s narrow pond, some alone, some in pairs. We passed each other with a smiled greeting and six feet of separation.

As I rested on a bench, a squirrel bounded across the grass. In all the years I’ve been observing squirrels, I don’t think I ever noticed that they jump instead of walk from place to place. Instead of being wrapped up in my head, I had slowed down my mind enough to simply pay attention. A good thing.

A guided meditation I was listening to this morning noted how important it is to see and acknowledge all the little things in life that are going right, right in front of us. It is so easy to get sucked into the terrifying vortex of COVID-19, the news of exponentially mounting cases, the sudden deaths of loved ones, the exasperating muddle of federal leadership. While it’s essential to be alert and informed by reliable sources, too much information doesn’t help me cope.

So right now, I’m just going to watch the snow fall.

Be well.

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

· · 2 Comments

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