• Mind
  • Body
  • Sight
  • Hearing
  • Smell
  • Taste
  • Touch
  • Skip to primary navigation
  • Skip to main content
  • Skip to primary sidebar

Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

  • Home
  • About
    • Privacy Policy
  • What Is Scleroderma?
  • Resources
  • Show Search
Hide Search

managing chronic disease

Home Alone

Evelyn Herwitz · May 28, 2019 · Leave a Comment

Al is away this week, in Israel, volunteering on an archeological dig. It’s a dream he’s had for at least a year, and he’s having the time of his life. It’s also an activity that I cannot share. We agreed that my hands are simply not capable of the sifting and digging involved. There’s a heat wave there, with temperatures over 100 degrees Fahrenheit by afternoon. The group has to get up by 4:00 in the morning to arrive at the dig site by 6:00. Work for the day finishes by noon, to avoid the worst of the brutal sun. Not my kind of schedule.

So I’m very glad that we were able to make this work for him. And fine being here on my own. But this is the longest stretch we’ve been apart—nine days—in six years, the last time involving another trip he made to Israel to visit our older daughter when she was living in Tel Aviv.

It’s an adjustment. I have good friends and neighbors that I know I can count on if I need any help. But I’m not about to call for assistance with all the little ways that Al fills in for my hands on a daily basis.

On Monday morning, for instance, the ants decided Memorial Day was the perfect time to march into my office, which is a renovated porch. The inner wall is the back of our chimney, and I noticed a tell-tale pile of fine dirt along one edge where the brick meets the carpet. A few industrious, tiny brown ants were scurrying hither and yon. There were also a few flying ants (not termites, I checked) that had chosen this very sunny day to flit about.

This is an annual spring phenomenon, so I was more annoyed than surprised. I brought up the portable vacuum from the basement, put the hose pieces together carefully so as not to bang my fingers, and sucked up the dirt (and a few ants, no doubt), then sprayed some Raid around the base of the brick wall.

The next problem, once the ants appeared vanquished (I won’t know for a few days if the swarm is over), was dealing with the fumes from the insecticide. I had a lot of writing to do, and I didn’t want to be forced out of my office by the smell (and sitting with those chemicals all day). Only problem is that the sliding door to our deck in my office is hard to open, but even harder for me to latch shut. Al always does this for me. So that option was out.

There is a bay window that has two panels you open with a crank. I never open them, because the cranks are not easy for me to manipulate. But I didn’t really have a choice. I cranked one window a few turns, only to realize that the top was stuck shut. So I cranked it closed and tried the other side. Same problem. The only other window in my office has no screen, and I couldn’t force it open, anyway.

As they say, necessity is the mother of invention. Out I went, into our side yard, armed with a tack hammer, planning to use its pronged end to leverage open the upper half of the window. I didn’t want to damage the vinyl frame, so I worked my tool carefully up the length of the stuck edge. It only took a few easy tugs, and the window opened its full length. I must admit, I was pretty proud of myself.

I spent the rest of the day writing, with plenty of fresh air and no more ant activity. The only problem with the open window on a sunny holiday was that my next-door neighbor, whom I rarely hear, was out gardening for several hours, chatting with some other folks who were helping or visiting, I couldn’t quite tell. Certainly her right, on a beautiful day, but (grumble, grumble) I would have preferred less of a distraction.

This is where working in a newsroom years ago comes in handy. I can still screen out other people’s conversations when I’m deep into my writing. And that’s basically what I did. By the time I came up for air, it was after 6:00 p.m. I made good progress. When I cranked the window, it closed easily.

I’m leaving the vacuum upstairs until I’m sure the ants are gone. I’m hoping that’s the worst of my problems this week. (Friday morning, the day before Al left, he discovered that our hot water tank in the basement was leaking, a problem that involved a seven hour plumber’s visit, a new tank, and a lot of money. Fortunately this happened while Al was still here, or I would have been a lot more upset.)

My next challenge: taking out the garbage without screwing up my hands or breaking the bag. I think I can handle it. But the recycling can wait until Al gets home.

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: Vlad Tchompalov

Share this:

  • Share
  • Click to email a link to a friend (Opens in new window) Email
  • Click to print (Opens in new window) Print
  • Click to share on Facebook (Opens in new window) Facebook
  • Click to share on X (Opens in new window) X
  • Click to share on LinkedIn (Opens in new window) LinkedIn

Filed Under: Body, Hearing, Mind, Sight, Smell, Touch Tagged With: finger ulcers, hands, managing chronic disease, resilience

Readymade

Evelyn Herwitz · May 21, 2019 · 2 Comments

As the weather finally warms up here in Central New England, I decided on Sunday to take advantage of sales and buy a pair of summer pants. Off to the mall I went, hoping for some good luck. I really don’t enjoy shopping for clothes much anymore. I’m particular, it’s difficult to find something that fits properly, and the mirror and neon lighting can be quite cruel. In addition, all the dressing and undressing can be quite tiring on my hands. But I had some free time, the sales looked good, and I was in the right mood to give it the old college try.

The first store I tried was a disappointment. None of the pants fit properly—either too baggy or too wrinkled. As a seamstress, I know how pants are supposed to fit without “smile lines” in the seat. I also look for quality fabric and workmanship. No luck. I did, however, find a nice summer sweater on markdown, so the visit wasn’t a total loss. (Never can have enough sweaters, year-round!)

So long as I’d made the trek, I decided to check out one more store. They, too, had a good sale on pants. This time, I found a pair that fit perfectly, right off the rack. Only one problem: I couldn’t zip up the zipper all the way. This wasn’t a matter of fit; it was a matter of workmanship. The pants had a left side invisible zipper with a small pull tab, and I could not grasp it firmly enough to pull it above the waistband seam. The seam was just a bit too bulky for the zipper to easily slide past. The pull tab hurt my fingers. And there was no sense in buying pants that I couldn’t fasten properly.

Fortunately, the same style was also available in several other fabrics, and a pair of navy blue pants not only fit, but also the same type of invisible zipper worked easily. So I bought them, happy with my find at a 30 percent discount.

As I drove home, I once again thought that I really need to finally figure out how to sew a basic pants pattern that fits and just use that for the future. I had tried this several years ago, but gotten discouraged with the results. Maybe this summer is the right time to try again. Sure would solve a lot of problems.

Meanwhile, I’m glad I found what I needed within an hour. And that I can zip the zipper.

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: Artificial Photography

Share this:

  • Share
  • Click to email a link to a friend (Opens in new window) Email
  • Click to print (Opens in new window) Print
  • Click to share on Facebook (Opens in new window) Facebook
  • Click to share on X (Opens in new window) X
  • Click to share on LinkedIn (Opens in new window) LinkedIn

Filed Under: Body, Mind, Sight, Touch Tagged With: body image, body-mind balance, finger ulcers, hands, managing chronic disease

On the Town

Evelyn Herwitz · May 14, 2019 · 1 Comment

I did a lot of walking last week, through and beneath the streets of Manhattan. The first half of the trip was business, the second half, pleasure—spending time with my sister to celebrate our birthdays, which are three weeks apart. And celebrate, we did.

From dinner at Ellen’s Stardust Diner, where the waitstaff are all Broadway hopefuls who belt out show tunes, to a walking tour of SOHO, Little Italy and Chinatown; from a lovely stroll up the High Line to a gourmet dinner and an outstanding performance of To Kill a Mockingbird—we had a great time. The weather was beautiful, for the most part. Our hotel off Times Square was surprisingly quiet. We discovered an excellent diner for breakfast and another for some of the best apple strudel I’ve ever tasted. And we started brainstorming our next trip together.

I’m happy to report that my new sneakers worked out pretty well. My feet certainly got tired, but not as tired as they usually do, and without significant neuropathy. Also notable: as I schlepped through the subway, to and from commuter rail, New Yorkers helped to carry my carry-on up and down steep staircases. Without my ever having to ask. Angels are everywhere.

Along the way, I enjoyed wonderful art, on the street and at the Met. Here’s a sampling for your viewing pleasure:

Art Deco with words for our times at Rockefeller Center
Also seen at Rockefeller Center
In front of 30 Rock
Street art in SOHO
Artistic and delicious pastry at Ferrara in Little Italy
Statue of Chang Kai Shek in Chinatown
Street art across from the Whitney Museum entrance to the High Line
Gardening on the High Line
High Line mural
Art Deco murals and design at the Hotel Edison
The Beatle’s original instruments at the Met’s “Play It Loud” exhibit . . .
. . . and some very decorative guitars
Berlin artist Alicja Kwade’s “ParaPivot” rooftop installation at the Met . . .
. . . and a spectacular view of the NYC skyline beyond Central Park

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.

 

Share this:

  • Share
  • Click to email a link to a friend (Opens in new window) Email
  • Click to print (Opens in new window) Print
  • Click to share on Facebook (Opens in new window) Facebook
  • Click to share on X (Opens in new window) X
  • Click to share on LinkedIn (Opens in new window) LinkedIn

Filed Under: Body, Hearing, Mind, Sight, Smell, Taste, Touch Tagged With: hands, managing chronic disease, mindfulness, resilience, travel, vacation

‘Tis the Season

Evelyn Herwitz · May 7, 2019 · Leave a Comment

April showers (and we’ve had plenty) certainly bring May flowers in my neighborhood. White-blossomed cherry trees and cream-colored callery pears, fuchsia magnolias and pink weeping cherries, along with maples unfurling pale green and purple leaves, grace sidewalks and lawns. White and violet violets speckle lawns that grow lusher by the day. The air smells delightful. With all the rain of late, pollen is subdued, and I haven’t started sneezing, yet.

In keeping with the season, another sign of spring has emerged: I have an infected ulcer in my left thumb. This spiked suddenly last Monday. Fortunately, it’s responding to antibiotics, which seem to be a perennial part of my world at this time of year. A good thing, because I’m traveling this week to New York for a mix of business and pleasure.

As my thumb became irritated, I wondered if I’d aggravated it by typing. Then I realized that I never use it to type. I’ve adapted to so many finger injuries over the decades that I automatically compensate for fingers that can’t comfortably or effectively strike the keys. Which made me wonder: How many fingers am I actually using to touch-type?

This is a bit like asking a centipede how it walks. I really have to stop and notice what I’m doing automatically, which can lead to more typos. But the answer is this: I use my pinky and ring fingers on my left hand, and my thumb, ring finger and pinky on my right. And I can still type quickly enough so that my thoughts translate almost immediately to the computer screen. It helps, significantly, to use an Apple “chiclet” keyboard, which has nearly flat keys with an easy touch, and a minimal rise so it’s easy on my wrists.

When my hands fell apart with severe ulcers two years ago (also in the spring), I learned to use Dragon dictation software to write. It was certainly a big help and enabled me to keep writing. But dictation taps a different part of the brain than writing brain-to-hands, and I will keep typing, even with only five fingers, as long as I can, because it is simply faster and more intuitive.

And so, I am dashing off this entry before I leave on my travels. Looking forward to fresh adventures—and to seeing how the flowers have grow when I come home.

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.

Share this:

  • Share
  • Click to email a link to a friend (Opens in new window) Email
  • Click to print (Opens in new window) Print
  • Click to share on Facebook (Opens in new window) Facebook
  • Click to share on X (Opens in new window) X
  • Click to share on LinkedIn (Opens in new window) LinkedIn

Filed Under: Body, Mind, Sight, Smell, Touch Tagged With: finger ulcers, hands, managing chronic disease, resilience, travel

If the Shoe Fits

Evelyn Herwitz · April 30, 2019 · 2 Comments

Dear Reader: With this post, I’ve switched to a different blog distribution platform. You can still get to the entire post from your email—please just click on the Read More link and it will bring you to my blog’s website, with the full text. EH

I’ve been on a quest for good walking shoes for at least a month, now. With the weather warming and travel plans ahead, I want to be sure that I have a reliable, comfortable pair that will minimize my feet issues, even as I am coming to accept that no pair exists that will make walking fully pain-free.

This is always a challenge. The biggest stumbling block is that you can’t walk outside in shoes that you’re trying out at home without committing to buying them. (I know of one clear exception, Allbirds, which gives you a 30 day trial of walking anywhere—if the shoes don’t work out, you send them back and they are donated to people who are homeless. Zappos has also accepted returned shoes I’ve lightly worn once outside, but I don’t want to take unfair advantage of that option.) So how to really know if the shoes will be comfortable on pavement or uneven terrain, which are always the big challenges?

My strategy now is to wear a pair I’ve bought around the house for a few days. Usually, if there’s a major fit issue, I’ll know right away. If there are other structural issues, I’ll know in a day. If the shoes are still comfortable after a couple of days, I’ll take the plunge and wear them outside.

But, first, they have to meet a number of criteria. The fat pads on my feet have thinned so much from scleroderma that I have to set a high bar:

  • Is there plenty of room in the toe box? No pinching?
  • Are they lightweight so as not to aggravate my joints?
  • Is the shoe made of materials that breathe, to avoid trapping perspiration and triggering Raynaud’s or causing skin breakdown?
  • Does my foot feel balanced, with pressure evenly distributed over the entire sole?
  • Does walking in the shoes adversely affect my knees, back or hips?
  • Is there sufficient arch support?
  • Is there a removable foot bed, so I can use my own orthotics or a good ready-made alternative?
  • Is there enough shock-absorbency, so the shoe doesn’t tire my feet or trigger the neuropathy in my right foot?
  • Can I walk without noticing the shoes? Do they fade into the background?

Then there is the question of style. I refuse to wear shoes that look like boats. Fortunately, now that so many of us baby boomers are aging, and many of us have buying power, there are a lot more alternatives for comfortable shoes that are at least somewhat attractive, even if heels are out of the question (and bad for your feet, anyway) and daintier styles lack necessary support. When I first began having these issues several decades ago, the choices were much slimmer. Now there are options, even for my particular taste.

If the shoes pass all of the above tests, then it’s time to risk a test drive around the block. None of this is foolproof. I’ve tested shoes outside, thought I had a winner, only to discover after repeated wear that they don’t work out in the long run. This has happened more times than I would like.

Which brings me to my latest acquisition, a pair of Abeo sneakers that I found at The Walking Company. I’m on first-name basis with the sales clerk, at this point. She knows my issues and really tries to help me find the right shoe. I landed on this pair after several rounds of other shoes that didn’t work out. Then I went back and upgraded the removable insoles. That combination seems to be on target.

My walk around the block on Monday in lovely sunshine was an A-. Pretty good, all things considered. While there is no pair that will make walking painless or tireless, these sneakers give me hope that I’ll be able to sustain longer walks—balanced with thoughtful pacing and rests. Staying active is simply too important to give in to all the obstacles that this disease throws in my path.

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.

Share this:

  • Share
  • Click to email a link to a friend (Opens in new window) Email
  • Click to print (Opens in new window) Print
  • Click to share on Facebook (Opens in new window) Facebook
  • Click to share on X (Opens in new window) X
  • Click to share on LinkedIn (Opens in new window) LinkedIn

Filed Under: Body, Mind, Sight, Touch Tagged With: exercise, feet, managing chronic disease, Raynaud's, resilience

  • « Go to Previous Page
  • Page 1
  • Interim pages omitted …
  • Page 41
  • Page 42
  • Page 43
  • Page 44
  • Page 45
  • Interim pages omitted …
  • Page 90
  • Go to Next Page »

Primary Sidebar

Subscribe via Email

Enter your email address to subscribe to Living With Scleroderma and receive new posts by email. Subscriptions are free and I never share your address.

About the Writer

When not writing about living fully with chronic health challenges, Evelyn Herwitz helps her marketing clients tell great stories about their good works. She would love to win a MacArthur grant and write fiction all day. Read More…

Blog Archive

Recent Posts

  • What Happened to Your Hands?
  • Drips and Drops
  • Out of Focus
  • Bandage Break
  • Threading the Needle

I am not a doctor . . .

. . . and don’t play one on TV. While I strive for accuracy based on my 40-plus years of living with scleroderma, none of what I write should be taken as medical advice for your specific condition.

Scleroderma manifests uniquely in each individual. Please seek expert medical care. You’ll find websites with links to medical professionals in Resources.

Copyright © 2025 · Daily Dish Pro on Genesis Framework · WordPress · Log in