Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

hands

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

What Happened to Your Hands?

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Recently, a young boy was studying my fingers. “Why do you have so many bandages?” he asked.

“I have problems with my hands,” I answered. For a pre-schooler, that seemed the appropriate explanation.

He looked concerned, or perhaps afraid. “You don’t have fingernails,” he said.

“No, I don’t,” I said. Not exactly true. I have a few left, but they certainly don’t look normal, more like moon crescents. He seemed perplexed, but then he got distracted and that was the end of our conversation.

A friend who overheard our chat checked to see how I took it. “Kids say what everyone else is thinking,” I said. “He’s just curious.”

It really doesn’t bother me anymore when people ask, after all these decades of living with odd-looking hands and way too many digital ulcers, especially since my hand surgery eight years ago that necessitated some partial finger amputations. Most people who know me don’t pay any attention to my hands. When a stranger (often a cashier or someone else I’m handing something to) asks, Oh, what happened to you? or clucks about my bandages, I just take it as a mix of natural inquisitiveness and compassion.

My standard answer is something like, “I have chronic ulcers.” I don’t bother to go into an explanation of scleroderma, because the occasion doesn’t call for a lengthy discussion, and I’d rather keep it simple. Sometimes the person will ask a follow-up, Does it hurt? To which I say, “Sometimes.”

I realize that such inquiries can be much more challenging for those with severely tightened skin. Before my skin relaxed somewhat on my face, hands, and forearms (a miracle, truly, as it was beginning to get uncomfortable to blink in the early years, and the skin on my hands was like leather), people who knew me casually would ask with concern whether I’d lost weight. They sensed something was different, but couldn’t figure out what.

I was very self-conscious during that first decade. When I began to see wrinkles in my forehead again after several years on penicillamine (a since-discredited treatment because research samples involved too few patients to prove a positive response, but I believe it saved my life), I was thrilled. But my hands were already deformed by then.

It wasn’t until I began writing this blog in January 2012 that I started to overcome all the embarrassment that I felt about my appearance. There really is so much more to living with a chronic, deforming disease like scleroderma than your looks or your diagnosis and treatments, although I don’t in any way mean to minimize the very real physical and emotional pain and stress of literally being trapped in your own skin, when scleroderma takes its most virulent form.

What I have learned in my nearly 45 years of managing this disease is that people take their cues from you. The more accepting you are of yourself, the more accepting they are of you. It’s a journey. I’m grateful to be sharing it with you.

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: Alex Skobe

Bandage Break

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It’s taken nine months, but the ulcer on my left ring finger has finally healed—for now. I must add the caveat, because I never know when the skin will deteriorate again.

But for now, it feels great to be out of bandages on that finger. Last January, it became infected, I lost the nail and was in considerable pain. My go-to antibiotic failed to clear it, so I saw an ID specialist who put me on Levaquin, which is powerful but cannot be combined with Ibuprofin, which I rely on for my joint pain. It also comes with risks of tendon tears. Fortunately, that didn’t happen, but I ended up needing Gabapentin to manage nerve pain. Visits to our hospital’s Wound Clinic finally helped me turn the corner with some new dressings, but it has been one very long haul.

I saw my NP at the Wound Clinic about ten days ago and asked her advice for weaning my finger from its bandages. This is always a tricky step. If I go without too soon, my ulcers inevitably get worse. She encouraged me to try using a moisturizing cream (Eucerin is my initial go-to) without a bandage at night, and I finally worked up the courage to do that a few days ago. At night the risk is always for the uncovered ulcer to dry out and start smarting, costing precious sleep.

Fortunately, that didn’t happen, either. I’ve been able to keep off the bandage since the weekend, even did some housework and had no issues. And so, I’m grateful to be at this point, at least for the time being. Even with scleroderma, my skin can still heal, which is a miracle in itself. And any break from bandaged fingers is a much appreciated vacation.

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.

Summer’s Gift

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There are a lot of reasons to complain about the heat this summer—too much, too humid, too risky. But there is also one big blessing for me: my finger ulcers are healing.

In particular, the left ring finger ulcer that I’ve been nursing since January through a lost nail and several rounds of antibiotics is much improved. A few visits to our hospital’s wound clinic were extremely helpful, especially learning the benefits of a special petroleum-jelly-infused gauze, typically used for burns, that has made a huge difference in managing the moisture level of the ulcer.

Keeping my ulcers moist but not too moist is always the key—and the trickiest part of this process. If the ulcer is not moist enough under the dressing, the skin tightens and becomes quite painful. But if it is too moist, the skin breaks down even further, takes longer to heal, and invites infections.

I also discovered that when my skin is extremely irritated, plain petroleum jelly is better than Aquafor, which has been my go-to ointment for decades. It contains lanolin alcohol, which can cause me issues. I confirmed this with wound clinic staff, and they said it’s not an uncommon reaction.

Another very useful medication that I received from the wound clinic is a steroid ointment, Triamcinolone Acetonide 0.5% (requires a prescription). This can only be used for seven days at a stretch, then you have to take a break. But it really calms inflamed skin.

I change my bandages twice daily, using whatever combination of dressings is most appropriate for that particular ulcer, a process that takes about a half-hour at present. Atop any ointment I place a small piece of very soft gauze, then anchor it with breathable fabric bandages. Right now, I’m down to four bandaged fingers during the day and three at night (one needs extra protection from typing).

My right thumb is my current problem child, with calcium bits beneath the surface, so I’ll bring that issue to the wound clinic this week when I review my situation. I also need advice for how to ween the left ring finger from dressings so the nail can (maybe) grow back.

I’ll never be free of my bandages. I’ve come to accept that fact. But I’m grateful, as always, for access to excellent medical care. And glad, even when it’s too hot, even for me, that summer is here, for now.

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.

Sew-sew

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I’ve had some sewing projects in mind for months—in particular, a dress that I sewed up last summer in a test fabric that I liked so much, I’ve been wearing it on hot days. It would look lovely and feel great in a very soft purple cotton blend that I’ve had in my fabric stash for, literally, decades.

So, with my digital ulcers doing better (summer bonus), though still bandaged, on July 4th I took the afternoon to cut out the pattern pieces. (I use a rotary blade for precision and ease of handling.) In so doing, I realized this would be a tricky project, because the fabric is so soft that it slips and stretches if I’m not careful.

Yesterday it was quite hot outside, in the 90s, so I had to put on the A/C. We have heat pumps that double as air conditioners, and they blow cooled air. Very effective, but with my Sjogren’s, they also dry my eyes even more than normal. But I had the time to start sewing, and I set to work.

It took me about a half hour to thread my serger, and more time to diagnose an issue with my sewing machine, which kept jamming until I realized that the thread had jumped one of the guide loops. The first dart sewed up perfectly. The second slipped despite pinning it in place (a challenge with bandaged fingers) and I had to remove stitches and redo it twice more. But I was not discouraged.

Four more seams on the serger sewed up nicely. I pressed everything carefully and moved on to the next step, a bias-bound neckline. And here’s where I ran into trouble.

When I made the test version, on more stable cotton, I was able to easily manipulate the material and sew it perfectly. But this fabric was a whole other animal. Using the same approach as last time was, simply put, a mess. I couldn’t control the fabric, my stitching was uneven, and I quit two-thirds of the way through the process because I realized it would not work.

Part of the problem was my hands—I could not feel the fabric through bandages in order to guide it in place. And part of the problem was my eyes—so dried from the A/C that my vision was blurring. Even using a small focused light wasn’t enough help.

So, with some difficulty I pulled out the stitches and put the project down. I have an idea of how to fix it, and enough left-over fabric, if needed. But if there’s one thing I’ve learned over the years, it’s to stop when I’m frustrated, set the problem aside, and give myself time to rethink my approach. It’s really hot again for the next couple of days, so I’ll need to take both my very dry eyes and my hands into account.

But I will finish the dress.

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.