Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

managing chronic disease

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.

Try, Try Again

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Every morning, I try to spend a few minutes meditating. I use an app, which is helpful and instructive. My mind wanders as minds do, but I am, over time, getting more adept at slowing down and focusing on my breath.

This came in very handy on Monday, when I found myself back in my dentist’s chair, because my new crown for my fifth implant came loose last week. No so loose that it popped out, but loose enough that it needed immediate attention. Of course, this all happened on New Year’s Eve, when no one could see me for several days. (Why do these kinds of issues always happen on a Friday evening or right before a long holiday weekend?)

In any case, it took two hours of poking and prodding by my long-time dentist, Dr. K, plus several tries to remove the crown and adjust its size so it would fit properly by his partner, Dr. F (she of the smaller fingers and more delicate touch). Ultimately, that did not work. I had been concerned from the get-go a few weeks ago that the crown was too big, and apparently my instinct was correct, because it never seated properly, which is why it loosened up.

So, now I have to return in a few weeks to redo the dental impressions, and then they will order me a new crown. Why didn’t this one fit—a problem I’ve never encountered before, thankfully? It was very hard to take the digital scans, because of my tight mouth, so that might have been the culprit. (For the repeat, we’ll do it the old fashioned way.) Or, as Dr. K surmised, the manufacturer that he’s worked with for years has changed personnel, and his trusted contact who always did things perfectly is no longer there.

In any case, at least there is a solution that I don’t have to pay more for, and the implant itself (what the crown is screwed into) is still solidly in place (my biggest concern). Everyone thanked me for my patience. I was grateful that I could breathe my way through it.

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: Filip Mishevski

What If?

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For years, our younger daughter has been asking me to document how I bandage my fingers. What if you can’t do it and need help? she asks. What do I need to know?

So, last week, while she was visiting for the holidays, we finally got down to the nitty gritty. I reviewed all my dressings, what I use for which kind of ulcer, and she took videos of me bandaging my fingers. Right now, I have five ulcers, with various issues, so it was a teachable moment, as they say. I also guided her as she bandaged one of my thumbs, so she could get the feel of the process. Which she got, immediately.

But we didn’t stop with my bandages. She created a computer file, and we went over all my medical issues, medications, doctors, and more. It was a lot to discuss, and it was exhausting to pull all that information out of my head, but very important and well worth the time and effort.

You never realize how much you do automatically for self care until you have to stop and explain every step, especially for a disease as complicated as scleroderma. And if, God forbid, I became incapacitated, it’s very reassuring to know that she’d have a complete written and recorded explanation of what help I would need. I certainly hope she doesn’t have to access any of that information anytime soon. But at 71, I know I have to be realistic and prepared for more help than I am accustomed to. And I am extremely grateful that she has insisted that we create this manual—and finally did.

Wishing you, Dear Reader, and your loved ones a healthy and fulfilling New Year. This one’s been a doozy. Here’s hoping 2026 is a better year for 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.

Image: Jesse Cason

Crowned

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And so, on Monday, I got my new crown for my fifth dental implant. It feels odd to have all my teeth once again, always an adjustment after nine months from extraction to finish, living with a space in my mouth.

As it was last month when my dentist and his team took impressions to make the crown, this was not a fun hour of my day. Lots of stretching my lips to the maximum as he manipulated the post into place and then adjusted the crown itself to fit properly. I had to stop him at one point because the stretching was really extreme, and I needed an break and some Vaseline to lubricate my lips.

But we got through it. My bite feels right again. I can speak more clearly—which surprised me. The tooth in question was the first lower molar on the left side, kind of in the middle of my jaw. Apparently, even a space there, not visible, affects your tongue and how you form words.

When I saw my dental hygienist last week, she checked, as always, the status of my other teeth, several of which have been resorbing slowly for years. One of them has progressed—or, rather, regressed—a bit since she last checked. Not a good sign. It has been somewhat sensitive of late, though fluctuating. I’m just hoping that it and its neighbor, the other troublemaker at present, can hold on for a while longer. I really need a year, at least, between these procedures, just to let my mouth (and pocketbook) recover.

Scleroderma brings many, many complications. Resorbing dental roots doesn’t happen to everyone, but I seem to have hit the jackpot on this particular problem. I am grateful to have excellent dental care. Both my parents had partial dentures as they aged, and I’m glad that’s not the only alternative any more. I just wish dental insurance covered implants, which it doesn’t. Given that my issues are caused by a disease, it seems ridiculous that there isn’t some kind of coverage.

Universal health care, anyone?

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: Akasha Dhage