Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Smell

Anticipation

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If all goes according to plan, next week I will be traveling to Germany to research my second novel. (Where is the first novel, you might ask? It’s in search of a literary agent, a long process. Details at my author’s website.) The second novel is set in Germany during 1928-1938, and I’m heading for Berlin, Dessau, and Munich. As we all know, when it comes to travel (and life in general) the adage “Man plans, God laughs” is often apt.

So, fingers crossed.

This is the first time I have ever ventured abroad on my own. I never traveled as a teen or young adult, with the exception of a two-week, whirlwind trip with my sister in 1973, a gift from our grandmother, who wanted us to see her German homeland and get a taste of Europe. We traveled by Eurailpass, back when it was really cheap to go First Class, from London to Berlin (we took the train-ferry across the English Channel to Belgium, then flew into Berlin since access was limited because the country and city were still divided), and on from Berlin to Copenhagen, Amsterdam, Zurich, and Paris. We stayed in youth hostels, dragged our suitcases everywhere, saw a lot, but decided to come home a few days early because we were totally exhausted.

In recent years, Al and I have traveled to Israel and made several wonderful trips to Europe, plus a lovely visit to Canada this past summer, and I’ve gained a lot of experience with travel planning. With this trip, I’m putting all of that to good use. I’ve cleared my plan with my entire medical team, who have been universally supportive and encouraging. And Al and our daughter are, as ever, supportive, too.

After all the restrictions of the pandemic and the past couple of years trying to figure out what exactly has been going on with my heart and lungs, I am both grateful to be feeling up for the adventure and trying my best to stay healthy prior to and during my travels. More than just a trip I’ve been dreaming of for several years and planning for months, this is a personal-best challenge to myself. I need to know, as I approach my 69th birthday next month, that I can just do it.

So, if all goes according to plan, I will be taking a break from writing here for a few weeks. I hope to have some great stories and photos to share when I’m back at the end of the month. In the meantime, Dear Reader, 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.

Image: Stefan Widua

Soup’s On!

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This past weekend here in New England was bitter cold. As in negative teens, even before the windchill factor. Not my kind of weather, not by a long shot. Fortunately, it passed quickly. But winter, regardless of an unwelcome Arctic vortex, is time for soup in our home. So, Dear Reader, here are two wonderful soup recipes I recently discovered from New York Times Cooking, as well as a delicious bean stew:

Golden Leek and Potato Soup by Melissa Clark
The best recipe with leeks and potatoes that I have ever found. I left out the heavy cream, because I don’t do lactose, but it’s fine and rich without.

Roasted Carrot, Parsnip and Potato Soup by Martha Rose Shulman
Recipe calls for a blender, but I just pureed it in my old Cuisinart, and it worked fine. Easy to make.

Rosemary White Beans with Frizzled Onions and Tomato by Melissa Clark
I never knew that onions sauteed until they caramelize are “frizzled,” but whatever you call them, they are yummy! This is also an easy recipe and just so, so good, especially on a cold winter day.

Bon appetite, and if you have links to favorite soup recipes (especially vegetarian) to share, please do!

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:  Dexter McQueen

Dry Spell

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Dealing with dry eyes in a Northeast winter is always a challenge. Even as ours has been milder, so far (knock on wood—or not, given that the planet is warming) there’s just no escape from dry heat indoors, regardless of source. Some solve this with a humidifier, but I’ve found them difficult to keep mold-free.

My solution for my Sjogren’s for the past year-and-half, in additions to Restasis® eye drops, has been scleral contact lenses. I’m very fortunate to live a ten-minute drive from a college that specializes in health sciences, including optometry, with an excellent dry eye clinic. Dr. S, who teaches the optometry students, is a fountain of creative solutions for my eye problems and has been my guide and cheerleader as I’ve learned how to wear the lenses.

So, when I showed up for my annual check-up last week, he and the third-year student who attended me were concerned that I’m once again struggling with my dry eyes, despite the scleral contacts. The issue this time is not allergies, as it was last spring, easily solved with antihistamine eye drops. Even with the lenses inserted, the part of my eye not covered by the lenses dries out too quickly, due to the dry air at home. I need to use saline drops frequently to keep them moistened, so I’ve taken to only wearing them a couple of times a week, when I am sure I can use the drops often. But when I go for a couple of days without wearing them, my eyes get gunked up and my vision, bleary. Not fun.

Dr. S listened carefully, and then came up with another brainstorm. He had samples of a new nasal spray that is designed to treat dry eyes, called Tyrvaya®. You read that right. A nasal spray for dry eyes. There’s a trick to spraying it—you have to aim it inside your nostril toward your ear. And definitely don’t inhale, because it really stings. But miraculously, after trying this for several days, I find that my eyes are producing more tears—enough, in fact, that I can go much longer wearing my contacts without the saline drops.

Fun fact, as part of this education: Even for those without dry eyes, we all blink less when staring at a computer screen. For me, this lack of blinking becomes a big issue, exacerbating my dryness. Dr. S had another ingenious solution: an app that reminds you to blink. So I’ve added the Blinks app to my iMac. Basically, it’s an image of an eye that pops up according to the schedule you set, and blinks, then disappears. I’ve just started experimenting with it, so I cannot yet assess, but I pass that along as an option.

I don’t yet know what Tyrvaya costs once the samples run out, and I’m betting it will involved more mishegas with insurance coverage. But so far, it seems well worth trying. Will keep you posted at a later date about my progress, Dear Reader. In the meantime, remember to blink!

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:  Petri Heiskanen

Open Wide

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It’s not easy to open my mouth all the way. Even as the stiffening of the skin on my face has eased significantly over the past 40 years (indeed, I have plenty of wrinkles to prove it), I cannot open wide at visits to the dentist or the doctor. My dentist and hygienist and periodontist are all well-versed in managing the complications of working on my teeth. Still, those visits are never easy.

But there’s another aspect to this issue that’s less obvious. And that involves food. In particular, food in restaurants. Most particularly, any kind of fancy sandwich.

Portions are so overdone in most eateries that a panini or vegiburger can be three inches thick or more. And I simply cannot open wide enough to eat it without making a huge mess. (Holding it in my hands is another matter—as in trying not to get sauce or condiments on my bandages, which can infect my ulcers.)

My compromise, on those occasions when I’m hungering for something hearty in sandwich form, is to eat it with a knife and fork. Which works, for the most part, but it’s not the same as tasting all the ingredients together. And manipulating those utensils through thick breads with my hands is no picnic, either.

One trick I’ve learned: It’s easier to eat a sandwich cut on the diagonal than as two rectangles. That way, I can take smaller bites to start and work my way to the center.

But probably the best solution to the restaurant sandwich dilemma: a good, old-fashioned grilled-cheese-and-tomato sandwich. On our trip in December to the Connecticut shore, I had the pleasure of rediscovering this favorite from childhood. Not too thick, not too sloppy (if I wrap it in a napkin as I eat), and so satisfying.

Have any of you with this same scleroderma issue found other good options? Please share!

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: Lefteris kallergis

Frazzled

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It’s that time of year when everyone is running around trying to finish up last-minute holiday shopping, fretting over holiday menus and meal prep, and stressing over holiday travel, all while Covid once again seems to be nipping at our heels. (PSA: Please get your Covid bivalent booster and flu shot ASAP if you haven’t already!)

Which is why I was grateful to just sit and finish the Times crossword while our Hanukkah candles burned Sunday night, the first night of the eight-day festival. It was peaceful and our home smelled delicious from the latkes Al was frying. And very good they were, too!

I still have a few small gift errands to run. I’ve also, in recent years, shifted from gifts to charitable donations for family members. I ask what they’d like me to support and then make a donation in their names. Everyone feels good, and there’s no risk of the gift being delayed or late, not fitting, or ending up on a shelf. And it’s easy to do.

Still, the frenzy can be contagious, which can be fun if you like all the stimulation. For my inner introvert, however, peaceful moments watching candles burn is more to my liking.

In the midst of all this, whatever your preferred holiday mode, it’s good to know that the Winter Solstice falls on this Wednesday, December 21. Which means that this Thursday, the days will start getting longer again. The difference may be infinitesimal, but in my mind, realizing we’re making the seasonal turn here in the Northern Hemisphere is always a huge.

And with that, I wish you, Dear Reader, a joyful holiday, whatever you celebrate. Let the light shine in.

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.