Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Sight

A Patch of Calm

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I used to think that any plant I touched would surely die. But ever since I planted my bonsai, a Brazilian rain tree, four years ago, I’ve been gratified to discover that I’m actually pretty good at this.

My little tree is thriving, especially this summer. New leaves appear almost daily, requiring some careful, frequent pruning for it to retain its classical bonsai triangular shape. You’re supposed to be able to see the structure of the tree through the leaves, but I haven’t trimmed it back quite enough. That can wait until the fall.

Visiting it every morning is a pleasure, because it forces me to slow down and appreciate what has sprouted over the past 24 hours. I also love to check it in the evening, when its compound leaves fold up like a book as the sun sets. This can also happen if my bonsai is stressed from too much wind or cold, prodding me to take it inside—an ongoing conversation.

This is not to say that I haven’t lost a few plants in the meantime. Only parsley remains in a potted herb garden that was a gift a year ago, but some tiny sage leaves finally seem to be sprouting. I’m also trying to rescue some mint, another gift, which failed to thrive, though it is beginning to revive in a pot.

These days, when so much stress and angst seems unavoidable, watching Nature work its miracles is a welcome and necessary respite. Whether in a pot or a garden or a nearby park. Dear Reader, I hope you find your own green patch of calm.

P.S. Regarding the outcome of my MacGyver solution for a Pilates reformer foot-bar pad, unfortunately, the pool noodle core was too narrow, so it didn’t fit over the foot bar, but it did fit over the wooden dowel that we use for some hand work. Not a total loss. On to finding padded Pilates shoes . . .

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.

Color Me Purple

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Purple is a standout color. It is the hue of royalty made from the rarest of dyes, the tint of smoldering sunsets, the shade of head-turning hydrangeas in a summer garden.

And, as of last Thursday, it’s the gorgeous color of my new dress that I finally finished sewing. As reported a few weeks ago, I had been making good progress until I messed up the neckline finish, so I put it aside for about a week to figure out the solution. The problem was the beautiful fabric, which I have had in my fabric stash for nearly 40 years. It has a very soft hand and loose weave, so it ripples and stretches and generally does not make for easy construction.

I had tried to finish the neckline with a strip of fabric cut on the bias (diagonal to the weave), which made it even stretchier. And my hands simply could not manipulate it on my sewing machine. So I ended up trimming off the mess and using a top-stitched facing (wider piece of fabric cut on the grain to encase the neckline edge) instead—easier to handle and a much neater finish.

Next step was to tackle the sleeves. Once again, the fabric was tricky to handle. When you set in a sleeve, you need to stitch a couple of rows of basting along the curved top, which enables you to gather that edge to fit the body of the garment. It took a lot of patience to spread the gathers evenly and pin them in place (without pinning them to my thumb bandages), then stitch the sleeve to the garment, and, finally, use a serger to overcast and trim the seam without accidentally cutting into the sleeve itself. I was catching my breath as I worked through that last step. But it came out fine.

The final steps were side seams, sleeve cuff finish, and a hem. I took my time with each one, and I managed not to make any big mistakes. Of course, I know where all the imperfections are in this project, but that doesn’t matter. It’s the final result that counts.

When I tried on the dress, I was really pleased. All the qualities of the fabric that made it such a challenge—the softness, breathability, drape, and yes, the color, because I used a purple thread that was so well matched that it was hard to see when I had to take out stitches for mistakes along the way—also make the dress a real pleasure to wear. It is cool and flows and feels very comfortable, a new summer staple for my wardrobe.

And it didn’t cost a cent to make. Just a boatload of patience and acknowledgement that, even if my hands can feel way too clumsy sometimes, compared to my former extremely fine motor coordination, they still serve me very well. Thank goodness.

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

Serenity Break

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I am way over the top with too much stress in the world. I suspect you are, too. So last Friday, I was very glad to attend a meeting at a beautiful Massachusetts Audubon sanctuary. This was a gathering of people who are working on ways to mitigate climate change and engage our communities in sustainable, resilient practices, not just in our home cities and towns, but for our entire county in Central Massachusetts. Always good to get together with good-hearted, civically involved folks who are committed to improving our neck of the woods.

But the best part of the meeting was the setting. You don’t need to drive far here to get out of the city and find some beautiful scenery. And in this case, grazing sheep.

So, Dear Reader, I share with you this picture I took, to remind myself of the wonderful, calming a-h-h-h I felt, being there. Hope it gives you a window of calm, too.


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.