Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

hands

700-plus

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I didn’t realize it at the time, but at the end of December, I wrote my 700th post on this site. I launched Living with Scleroderma on January 3, 2012, and have been posting nearly every week since, with time off for good behavior when on vacation.

That’s a lot of posts. While there always seems to be plenty to write about all the daily challenges of this complex disease, my goal since the beginning has been to emphasize the living over the scleroderma. Whether it is this autoimmune disease or another chronic condition, the biggest challenge of all is to understand that you are much more than your diagnosis. It is a part of you, certainly, and commands all too much attention some days. But I strive not to let my scleroderma define me.

Writing about it weekly, a good discipline in itself, has really helped me to maintain that perspective. Most days, even as I’ll curse like a sailor when I accidentally bang one of my fingers, right where the calcium is pushing just below the skin or at the jagged bone at the tip of my resorbed digits, I don’t really think about it. Scleroderma is a demanding presence in my life, but it doesn’t own me.

Because I can’t let it.

And so, Dear Reader, some of whom have been with me for the past 14 years, thanks for your interest, your comments, and your encouragement. May we all live the fullest lives we are able. Each day is a gift.

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: Beth Macdonald

Spring Beckons

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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

A-Peeling

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Prepping vegetables for meals is one of those tasks that I often find challenging. I need to wear latex gloves when I cook so I don’t infect my finger ulcers, and this makes handling food difficult, because my fingers have been shortened by both resorption and surgery, so the tips of the gloves always flop around and get in the way. Onions, in particular, are tricky, and my lack of tears from Sjogren’s can make slicing them extremely uncomfortable.

Then there is garlic. I use a lot of garlic in recipes, but it is a beast to peel. I can’t do the trick with slamming the flat side of a chef’s knife on a clove, because I need to protect my hands. So I end up trimming the top and bottom with a paring knife and then slowly picking away the papery skin. Very, very tedious.

That is, until today, when I tried out my new silicon garlic peeler. At least a year ago, a good friend who is an excellent cook introduced me to this little gadget, which I thought was ingenious but never got around to buying—that is, until I had to order some new potholders last week to replace old stained ones that had attracted a mouse. As long as I was finally replacing those gross potholders, why not get the garlic peeler, too?

Here’s how it works: The inside of the tube is covered with bumps to create friction. You place the clove inside, then press down on the tube with the heel of your hand and roll it back and forth a few times. Presto! It neatly removes the skin and leaves you with a perfectly clean garlic clove! Rinse out the tube, and you’re good to go.

Whoever the genius is who invented this handy (literally), inexpensive tool, my heartfelt thanks. Now, if anyone knows of a good tool for easily peeling and slicing onions that won’t make me cry dry tears, I’m all ears.

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.

Second Skin

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Over the past year, I have been seeing a nurse practitioner at the Wound Center at our local hospital. She is absolutely brilliant, creative, and a great, empathetic listener—as are other members of her team. And she has introduced me to a number of wound care products that have made a significant difference in how I manage my digital ulcers.

Her latest suggestion was to try Cavilon™, a 3M product that creates a breathable barrier film on a wound. It comes in small, individual packets, about the size of a sticky note. It also, I just discovered, comes in a small pump-spray bottle, which is probably more efficient.

In any case, the stuff works. You wipe or spray it on the wound and it quickly dries to a clear, waterproof film, protecting the skin without need for a bandage. And, unlike other liquid skin products that I’ve tried, it does not burn.

For years, I’ve wished for a dressing that I could use at the first sign of an ulcer, to prevent it from getting deeper and more problematic, requiring months of bandaging twice a day. I’ve been experimenting with Cavilon for a few days now, and it seems to fit the bill.

In particular, my skin grafts from hand surgery in 2017 get very delicate in the winter, exacerbated by dry heat. Two of the grafts have cracked over the past month, requiring bandages. But right now, as I type, I just have the Cavilon barrier on them. They don’t hurt, they are not cracking or peeling, and best of all, no bandages!

Cavilon is available online. You can learn more about it here. Please note that it is not recommended for infected wounds. And, no, I am not getting paid for my views. Just want to pass along my experience with a game-changing wound dressing. 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.

Touch Type

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As I was writing just now, I realized that I am typing with only my pinkies these days, with my thumbs handling the space bar. (Using an Apple keyboard makes this possible, because it requires only a very light touch.) Usually I also use my right ring finger, but it’s been out of commission for a few weeks due to another ulcer, which, of course, formed on a pressure point, as in where I touch the keys.

What’s so interesting about this is that I don’t actually notice, most of the time, how I’m typing. My hands have learned to adjust to various fingers being unavailable for so long that they “know” the distance between keys without my having to look (for the most part). Kinesthetic memory is a powerful sensory skill.

Many decades ago, when I could still play the violin, I could hear a piece of music and sense in my fingers how to play it—where each fingertip would land on the strings, which direction to ply the bow. I certainly can’t play Mendelssohn anymore, but sometimes I can still almost know, intuitively, how.

So, I guess I haven’t lost that skill. It’s just emerged in a different way. Pretty neat.

Our brains and bodies are quite amazing, even when they don’t work perfectly anymore.

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: Wayne Hollman