Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Sight

Until Next Year

· · 3 Comments

Last Wednesday night marked the beginning of Passover, when we always host the first seder for our extended family. Al’s first cousins always host the second seder. This is a family tradition that dates back to Al’s mother and her youngest sister, who alternated hosting the two festive meals every year, when we join Jews around the world in retelling the Exodus story.

Even though we share the meals between the two families, it’s still a lot of work. My hands were in rough shape as the holiday approached, with six fingers in bandages, due to persistent ulcers and calcium bits that had chosen just this time of year to travel up to the surface and hang around without popping out. This feels like having grains of sand stuck under your skin. No fun.

Fortunately, our younger daughter had already planned to come up from Philadelphia to help out with the cooking for three days. Yes, it takes that long, because I can’t help myself. I always plan a very special meal with lots of courses. Even when I’ve mastered all the recipes and know how to pace myself with the meal prep, it’s just a lot of work.

So, we cooked and shopped and cooked together for several days. She did the lion’s share of the chopping and mixing and frying and baking, while I directed and handled a variety of smaller details that were essential for the final meal. Here’s what we made: Egyptian charoset, which is a mixture of dates, raisins, ground nuts and sugar; hard boiled eggs; pickled salmon (a family favorite, as an appetizer); Egyptian potato soup; spinach patties; roasted carrots, beets, and turnips; a salad of oranges, avocados, red onions, arugula, and a cinnamon vinaigrette dressing; apricot sponge cake, chocolate chip meringue cookies, strawberries, grapes, and chocolate for dessert. And, of course, there was plenty of matzah, including gluten free.

It was a hit. Worth all the effort. We had fun cooking together, though I was quite tired afterwards.

Learning how to ask for and accept help is a crucial part of living with scleroderma. I’m very grateful to our daughter for being so willing to step up and keep the family tradition going. Until next year . . .

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 Never Simple

· · 2 Comments

A few weeks ago, I ordered new glasses. It’s been a few years since I’ve updated my prescription, mainly because I’ve had so much trouble with dry eyes from Sjogrens that it’s very challenging to get an accurate eye exam. My eyesight is often blurred due to lack of tears, and when I put in drops, they blur again for a while. Really tough to get that Goldilocks measurement.

Then there is the issue of frames. I have worn Silhouette frames for years, which are rimless and very lightweight. I have to be extremely careful not to wear frames that put any pressure on the bridge of my nose, because that will accelerate the formation of calcium deposits on the cartilage, which eventually needs to be removed to avoid creating an ulcer. I’ve gone through this uncomfortable surgery several times over the years, and the last time, the ENT plastic surgeon told me it will be very difficult to do again.

When I ordered my new frames, however, the optician persuaded me to try a different lightweight brand called OVVO, which seemed promising. Only problem is that my face is small, and they have limited small styles. I picked one out that seemed good and hoped for the best.

I got the frames last week. There are a few issues.

First of all, the prescription seems to be off. I can see very well when I read—even fine print. But my distance vision seems worse than before. So I have to have another eye exam. I can swap out the lenses at no cost.

Secondly, however, the frames are a bit too heavy. It’s one thing to try them on without any glass lenses, and another to wear them with real lenses. Even as the optician ordered the lightest weight lenses for me, they add just enough pressure to be too much.

Finally, I realized that the shape is not that flattering. I was trying to decide under pressure, when I didn’t have enough time to really think it through. Fortunately I can trade them in for a better pair, or I’d be out a hefty fee.

So it goes. Never a simple solution with chronicity.

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: David Travis

Spring Beckons

· · Leave a Comment

Nights here have been clear and cold, and the moon is waxing brightly. As I write on Monday morning, I’m anticipating tonight’s stunning view, when the moon will be full, a huge silver plate in the sky—that is, until 12:44 a.m. Tuesday morning, when a two-hour total lunar eclipse will begin. As the moon passes between our Earth and Sun, it will turn a deep red. Hence the name “Blood Moon.”

A full moon in March in this part of the world is also known as a “Worm Moon,” because it marks the approach of spring, when earthworms begin to emerge from the soil, aerating it for the season of new life. Our frigid weather and mounds of snow are starting to recede. I’m looking forward to springier temperatures soon.

As is always the way, however, this time of year also is the hardest on my hands. Dry heat at home and yo-yoing temperatures outside combine to cause my skin to expand and contract and shred and crack. I have to be extra vigilant about my digital ulcers. Right now I have five fingers bandaged.

Fortunately, I also have a well-timed appointment at our hospital’s Wound Clinic this Thursday, so I’m looking forward to their good advice. Their suggestion to use Cavelon barrier film is helping a lot. I spray it on several ulcers before covering them or leaving them bare as needed, both to protect and manage moisture from ointments.

On my worst ulcer, I’m using Cavelon and then Exuderm film to cover it, which retains natural moisture without macerating the skin. All that gets overlaid with a piece of very soft gauze and fabric bandages. It takes me about a half-hour twice daily to change all the bandages, but at least I’m still able to use my hands.

And so, spring beckons. If you’re a night owl with a clear view of the sky, I hope you enjoyed the eclipse!

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: Atul Vinayak

White Out

· · Leave a Comment

As I write on Monday afternoon, all is white outside, once again. We are in the midst of a blizzard that has slowed down our corner of the world. Maybe a foot-and-a-half of snow when this is over later today, maybe a little less, maybe a little more—on top of all the snow that hasn’t yet melted from last month’s storm. Al has shoveled half our drive, so far, and is taking a well-deserved break. Thankfully, we still have power and heat.

All appointments and my acting class cancelled, once again. But we’ll catch up, eventually.

Big storms are humbling. And disorienting. Is it Monday? Or still Sunday? Does it matter?

Outside, the birds and squirrels know how to cope without worrying about what day it is or what comes next. I’m trying to take my cue from them.

Stay safe out there, all.

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.

Olympic Interlude

· · 2 Comments

Nearly every night for the past 11 days, I have been reveling in the Milan Cortina Winter Olympics. Watching these amazing athletes’ extraordinary feats has been the best antidote to horrible headlines and stress. It has also helped me get through my bout with the flu and the lagging fatigue and residual, annoying cough.

I am a sucker for the whole spectacle. I feel elated when “old” athletes, who are at least half my age, triumph, as did Italy’s Federica Brignone, whose courageous comeback in the women’s giant slalom earned her gold. Honestly, her win brought tears to my eyes (to the extent I can make tears).

And my heart goes out to those who fall, like champion skier Lindsey Vonn and ice skating wonder Ilia Malinin. Vonn’s skiing career may be over (I really hope she doesn’t risk breaking her leg or shredding her ACL again), but Malinin will be one to watch in 2030. I wish him well and hope he learns from his Olympic experience to keep growing and striving for his personal best.

I will never be able to soar through the air like freestyle skier Eileen Gu, but I love watching her fly with such joy. I am inspired by the extraordinary grace and strength of ice dancers Madison Chock and Evan Bates. But what moves me the most is the sportsmanship of so many athletes from around the world, who compete so intensely and then congratulate each other so graciously.

Our world could use a lot more of that spirit. May it be so.

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: Passo Falzarego, Cortina d’Ampezzo, Italy, by Marco Czollmann