Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

managing chronic disease

Sew On and Sew Forth

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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.

Party Crasher

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Just when it seemed like we could finally enjoy a semi-normal holiday season, with safe family gatherings if all are vaccinated, and even the possibility of eating indoors at a restaurant again post booster, along comes Omicron.

We still have a lot to learn about what appears to be a highly contagious Covid “variant of interest.” It will be a couple of weeks before scientists can determine if Omicron can defy the vaccines, although there is reason to believe that the vaccines, especially with a booster, will still protect against serious illness.

In any case, the same safety precautions continue to apply: get vaccinated, get a booster if you’re 18 or older and at least six months out from your full dose, wear a mask in public, practice social distancing, and get tested if you are exposed to someone who has Covid or if you have symptoms.

I am trying to focus on the positive. I’m really grateful that our family are all boosted. We had a great visit with extended family over Thanksgiving weekend, all were vaccinated, and it felt like the Before Times. And so far, so good, I feel fine. I hate having to wear a mask in public, but I can deal with it. It does not impinge on my personal liberty. I am glad to do my part to protect myself and others.

Perhaps this latest development will finally convince the hold-outs to get the jab. Probably that’s wishful thinking. Clearly, more vaccines are needed throughout the world to save lives and make the transition to just another virus we learn to live with.

And so, the pandemic drags on. Stay safe out there.

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: Bernard Hermant

What I’m Grateful For

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What a difference a year can make. Last Thanksgiving, our younger daughter couldn’t come home from Philly because of Covid risks. We had a small celebration with our eldest, who lives only an hour away. But the holiday was overshadowed by all the uncertainty and infections and deaths wrought by the pandemic.

This year, we’re looking forward to all four of us being together on Thursday and to seeing extended family over the weekend. We’re all vaccinated and boosted, so I’m much more relaxed about it than I was last November.

So, of all that I’m grateful for this holiday—our family, dear friends, a nice home in a peaceful neighborhood, a supportive community, the ability to work for myself and pursue my own writing, relative good health despite scleroderma, and more—the thing I am most grateful for this Thanksgiving is the Covid vaccine.

It is an absolute miracle. It is worth the temporary side effects. It prevents serious illness. It saves lives. It has protected me for many months, now. I fear how I would have fared during the Delta wave this summer without it. As cases again surge in Europe and here in the U.S., primarily among those who are not vaccinated as colder weather drives us indoors, I profoundly hope that more people will realize the incredible gift of this scientifically sound and safe vaccine, and get protection for themselves and others around them.

This is my 500th post on Living with Scleroderma. I could never have imagined, when I started this blog on January 3, 2012, that I would be writing about surviving a global pandemic nearly ten years later. Just typing that sentence is mind-boggling. We can never know what is coming next. My hope for you, Dear Reader, is that you make the most of each and every day, whatever it brings—and bring your best to it. That’s really all that any of us can ever hope to do.

Be well, and happy Thanksgiving to all who celebrate.

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: Eric Tompkins

Winter’s Breath

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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

Autumnal Perfection

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Sunday was one of those perfect, crisp fall days here in Massachusetts, just right for a good walk. So I took advantage of the weather to follow the trail around a drumlin nearby, one of the hidden gems of our city’s parks. Within a few minutes, you can immerse yourself in woodland. Even as car horns and swooshing traffic penetrate, the sounds of the city become more muffled the farther you climb the hill. My personal challenge is to make it all the way up the circular trail without stopping—good aerobic exercise. Trees along the way to the park, up the hill and down, provided inspiration. I hope you enjoy the view!

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.