Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

resilience

Back to Pilates

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As I wrote a few weeks ago, I am in dire need of a solid exercise routine that will help me improve my posture and get stronger overall. Walking is my favorite exercise, weather permitting. I tried yoga a couple of years ago and ended up injuring my back. So that was out. Before the pandemic, for several years, I enjoyed Pilates, especially working out on a reformer, which is a bench with springs and ropes that you use to do various movements, using your body weight as a counter-force.

So, I decided to give Pilates a try once again, and about three weeks ago I went to a free intro course at a studio about 15 minutes from home. The studio was filled with reformers, so that was a good sign. Mat classes are okay, but not as interesting. As we went through the half-hour routine, many of the exercises were familiar and relatively easy for me to do.

However, about 20 minutes into the class, all of a sudden, my right shoulder began to shudder. Now, I know what an overworked muscle feels like when it trembles. But this was something altogether different, involuntary and weird, possibly triggered by arm circles, pulling on ropes that moved the carriage as we moved our arms. Whatever the reason, it really threw me for a loop. We moved on to leg exercises, and in about 10 minutes my shoulder calmed down. I spoke to the instructor after class, and she suggested reducing the spring tension and making smaller arm circles next time. She also asked if my docs had approved this exercise, to which I responded that they’ve been encouraging me to do more.

But I went home quite unsettled. Was my body really not up to this anymore? I stalled for about a week, then decided to contact my rheumatologist for his assessment. He was very encouraging and realistic. “You’re deconditioned,” he said. His advice: Take it slower to build back up, but there’s no reason not to go back.

So I did. Last Friday I took a full 50-minute, basic level class. I moved through the routine at my own pace, with rests as needed and smaller movements as necessary. Finished without any difficulty, and I haven’t really been too sore, either (compared to the intro class, which took a weekend to recover from). I’ve already scheduled a class for this week, and I intend to get a studio membership.

Best of all, I’m already noticing little improvements in my ability to stand straighter and get up more easily from a squat. All good signs that, as my cardiologist keeps telling me, it’s never too late to build yourself up again.

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: Ahmet Kurt

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.

Stand Up Act

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I’ve been thinking a lot about my posture, lately. Back in May, after I performed a scene from The Glass Menagerie as the culmination of my spring adult acting class, I watched a video of same and was dismayed to see how stooped I’ve become. Some of this is just due to aging, loss of elasticity, and my shrinking spine cartilage. But I also observed how I pull myself inward physically, a deep habit of protecting my hands. While others may not notice this, it was quite striking to me.

Nothing like watching yourself on video to get a reality check.

Ever since, I’ve been trying to remind myself to stand up straight, both to improve my overall health (the more I stoop, the more my whole body feels out of whack) and mental attitude (facing the world head-on). It’s getting a little bit easier, but my slouchy stance is like a strong rubber band that snaps back.

So, I’m going to try Pilates again. The last time I took a class was before Covid, probably even a few years prior to the pandemic. A couple of years ago, I tried yoga, only to throw out my back. It took weeks to recover, and I never returned. I used to enjoy Pilates, especially using the reformer equipment, and I really need a way to strengthen my core.

I found a studio that’s closer than the one I had been attending the last time, and my free intro half-hour is this Thursday. This studio also seems to have a really good range of classes for all skill levels, so I can work my way back into it. Only one problem: They don’t post their rates. Which I don’t like. This studio is part of a franchise, and obviously they want to hook you in with a free trial rather than scare you off with high prices.

So, I’ll just have to try it out and see if it’s worth whatever they are asking. I have enough experience with Pilates to know good instruction when I find it. And my health is priceless.

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: Joyce Hankins

What Next?

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Somewhere I read recently a recommendation that resonated, a way to manage stress. The concept was to “shorten your horizon.” The idea is not to stop setting goals or making plans or other future-oriented tasks. Rather, it’s about adjusting how far to look down the road in anticipation of events.

Given all the scary news of late, this seems like a sound approach to coping. Given, also, that I have a fiction writer’s imagination—both a blessing and a curse—I find this appealing. If I focus only a week ahead, rather than a month or six months, or a year, or, good grief, even beyond that, I have a much clearer grasp on what is more likely to happen, how I might be affected, what I can and cannot influence, and how to adjust expectations and plans accordingly.

Of course, reality has a way of throwing all of that into the hopper. The only truth we ever know is what is happening in this moment. And living fully in the present is truly the only way to find fulfillment in each day.

Which is why shortening your horizon can help you stay more in the present. If your mind is not always preoccupied with the future, especially the far future, you aren’t as distracted from appreciating what’s in front of you—particularly relevant with so much trouble in the world.

This is also an essential skill set for coping with a chronic disease like scleroderma. You need to learn what to watch for, seek out excellent medical advice, follow your treatment plan, but also appreciate what each day brings. Years ago, when I was first diagnosed, I decided I didn’t want to know the odds of survival, which turned out to be one of my best instincts. At the time, the expectation was about seven years, a terrifying prospect. I intuitively learned to focus on a shorter horizon back then, because to do otherwise would have been paralyzing.

So, here I am again, relearning that same lesson, as it applies to life in a tumultuous world. It’s second nature for how I manage my scleroderma. Now I just have to figure out how to master that outlook for events even farther beyond my control.

It’s a work in progress.

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: Nicole Avagliano