Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

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.

Noodling Around

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Last Thursday I went to my new Pilates studio for the third time. I found an instructor who understands my need for adaptations without my even having to ask, I made it through the class without any setbacks, and I’m gaining strength little by little.

But there’s an issue I need to address. At this studio, you wear grip socks to help you hold onto the foot bar with your toes. The bar is only slightly padded, not great for me, because nature’s padding on the balls and heels of my feet has thinned out due to scleroderma. Years ago when I took Pilates at a different studio, they had optional foam padding to cover the foot bar. This studio doesn’t.

I’ve tried using metatarsal pads inside my socks, but they’re cumbersome and don’t really offer enough cushioning. What to do? I asked my instructor, and she said the foam padding you can buy online for a Pilates reformer is overpriced. As we brainstormed MacGyver alternatives, we came up with pool noodles—those long, colorful foam cylinders that kids use to learn to swim.

I did some online research, and sure enough, she was right about the pricing of the official foam pads for foot bars, ranging from about $35 to over $100. So, I checked out pool noodles. It turns out, there are two kinds—solid core and hollow core. I wanted the latter, because you need to be able to fit it around the bar. A little more research led me to a really cheap option: pool noodles at Dollar Tree for $1.59.

Given that it’s already August, pool noodles are in short supply, but at the second Dollar Tree store I visited, I found one of the last noodles in the display box. And, it’s purple.

I checked the dimensions of the official foam pads (23 inches long), marked the length, and set to work with an Exacto blade, a rotary cutter and point turner from my sewing box (the latter to help separate the foam), and a pair of very sharp shears. The operation—shortening the noodle and then slicing one side lengthwise—took all of 10 minutes.

The foam sheds a little, so I don’t know if that will be a nuisance. I also don’t know how well it will actually fit around the foot bar. But for $1.59 and 10 minutes of effort, it’s certainly worth a try.

And, it’s purple.

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.

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.