Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

finger ulcers

Little Victories

· · 2 Comments

No doubt. It’s winter here in New England. Over the weekend, we got about a half-foot of snow, plus some icy rain. Our bird feeder’s squirrel-blocker, a plastic hood that hangs above the feeder, looked like a snow hat. And it’s cold, hovering in the ’20s F. Today we plunge into single digits.

Despite the bitter weather, which I find rather intimidating, I forced myself out the door twice in the past few days. My first jaunt around the neighborhood, on Saturday afternoon, was my first venture out of the house since before Christmas, because of that darn respiratory, non-Covid virus that dogged me for a good 10 days. It felt so good to breathe fresh air. And I finally have my voice back.

Monday afternoon, I ventured out again, along my half-hour route. I was bundled up in my warmest, full-length down coat, lined boots, scarf, wool cap, aviator hat over that, and mittens. I looked ridiculous. But I really don’t care. It’s a priority to get out and walk whenever I am able, to clear my brain, stretch my legs and back, move my joints, and exercise my heart. I definitely feel better when I get home.

I also feel just a little bit invincible. (Yes, I know, that’s an oxymoron.) If I can get out and walk a half-hour in freezing temps, then I’ve overcome my Raynaud’s and scleroderma for another day. And that, Dear Reader, simply feels great.

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.

Rainbow Fingers

· · 2 Comments

On Sunday afternoon, I was sitting in my home office, making plans for the week, when I leaned back in my chair and glanced at the ceiling. There were dozens of rainbows, scattered everywhere. I looked down at my desk and saw more rainbows, dancing across my hands.

The source was the mid-afternoon December sun, fracturing through my crystal pen holder. I tried to take a picture of my left hand with my right, holding my phone. But this was an impossible feat, given current ulcers. So I grabbed my small tabletop tripod, rigged up the camera, and caught the image, above . . . though not without some difficulty, because the Earth was turning and the sun’s angle was shifting, even within seconds.

Change is the only constant. Beauty is fleeting. But if you pause to pay attention, glorious moments abound.

May your day be full of rainbows.

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 On and Sew Forth

· · 6 Comments

Finding truly warm, affordable clothes with some style is not all that easy. Ever on the lookout, I find that too many offerings that look warm are actually made with synthetic fibers, like polyester, acrylic, or nylon, which don’t really keep you warm and can trap perspiration, making you colder. But good wool garments are expensive.

So, I decided my best alternative was to sew myself a sweater jacket for winter. A few months ago, I found an easy pattern and some cranberry-red alpaca knit fabric on sale online. Next step was to get the fabric dry-cleaned, to preshrink it (this prompted the dry cleaner to request my signed understanding that the fabric might ravel in the process—which didn’t happen).

But then the fabric, now ensconced in a plastic dry cleaner bag, lay folded in my office. For weeks. The problem was two-fold: I didn’t have time/couldn’t make time to work on the project due to holidays et al., and, more importantly, I have been wrestling with some very sensitive ulcers on both thumbs and my right ring finger. No way to cut out the pattern, figure out any adjustments, cut the fabric, and sew it up when I really couldn’t handle scissors or pins.

That is, until this past Sunday, when my hands had finally progressed enough, Thanksgiving and Hanukkah celebrations were past, and I decided to just get down to it. Cutting the fabric was still hard, despite using spring-loaded shears, but I made a lot of progress, especially because I could use my serger, which sews, trims, and finishes seams all in one step (but you really have to pay attention, because seams can’t be resewn easily!). Wool is also very forgiving, with any wobbles in the seams (due to weaker hand control) easily steamed and straightened. Still another sewing session needed to finish it, but I’m pretty pleased (ever the perfectionist) with the outcome.

And, it’s delightfully warm.

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.

Winter’s Breath

· · 4 Comments

The city swept our streets last week, clearing mounds of brown leaves that neighbors had raked or blown into piles along the curb. Then the wind blew and rain fell and more leaves speckled lawns and sidewalks and pavement.

The trees always win, and that’s fine with me. Fallen leaves return nutrients to soil. And I like their sound and earthy smell as I scuffle through them. A child’s pleasure, it’s one of the rewards of forcing myself out the door to take my walk when it’s colder and the sun sets too early. My neighbors wear warm coats and wool hats as they walk their dogs. We all feel winter’s breath.

My fingers, too, are registering the approach of colder weather. The heat is on in our home, and my skin is dry. I’m up to four digital ulcers again, after a really long stretch of only one or two over the summer and well into fall. For now, no infections, although I’ve been on and off antibiotics for months, and my right thumb is not happy with my typing.

This morning I see my dentist, who had a new flipper made for my missing tooth. I’m hoping it will be easier and sturdier than Version One, which I’ll also have her check. Since I got my implant two weeks ago, the flipper no longer fits. I have yet to decide if this false tooth was worth the money, but I also have at least two more months to wait until I can get my crown and have all my teeth again—that is, assuming that the other lower front tooth, which is also resorbing, can stay put for a while longer.

So it goes. Managing my scleroderma is always a process of fine tuning every day. After 40 years, it’s just part of my routine—time consuming, but mostly white noise. I prefer to focus on living.

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: Johannes Plenio

Ulcer Fiends

· · 2 Comments

It has been pouring, a chilly rain, all day Monday. Fall is definitely here. What amazes me, though, is that I only have one digital ulcer—on my left thumb—that requires a bandage. At this time of year, that’s a minor miracle.

As I’ve written elsewhere, spring is always my worst season for ulcers on my fingers. This summer, however, was a challenge, as well. In the past six months, I have been on antibiotics at least three times, for about a month each time. That’s how long it takes the infection to clear. May was the most challenging month, with multiple fingers competing for attention.

Fortunately, I caught the infections before they became intolerable. One set required two different antibiotics to clear up completely. Perhaps it’s because I just finished the last round of antibiotics only a few weeks ago that my fingers are in better shape right now. Or maybe because I’ve been using medical grade honey to treat them, which both has natural antibiotic properties and also gently debrides dead skin. I was getting concerned about my left thumb, because it appeared that bits of calcium were buried in the ulcer and popping out, impeding its ability to heal. That situation has finally resolved, for now.

Writing about my sole bandaged thumb certainly risks tempting the Ulcer Fiends. They will be back to stage another sneak attack, as is their way. But I hope they’ll give me a break for a few months, at least. Maybe give me time off for meticulous hand care? A pass for layering up with sweaters and hand warmers? A chance to enjoy a little freedom from bandage adhesive? I promise to always use hand sanitizer when I’m out and about and a good skin moisturizer every night.

Are you listening, Ulcer Fiends? Probably not. Until we meet 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: K. Mitch Hodge