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Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

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adaptive tools

That’s a Wrap

Evelyn Herwitz · May 17, 2016 · 2 Comments

23924473493_f89d1e0822_zWould someone please explain to me why a cucumber requires shrink wrap? I’m talking about English cucumbers, the long ones that have a very crisp texture and fewer seeds. Their skins aren’t as tough as regular cukes. But shrink wrap? Really?

I hate that shrink wrap. It is next to impossible for me to strip it from the cucumber. My fingers just can’t grip that well. And it clings so tightly, the harder you pull, the more it resists. Honestly, all I want to do is make a salad. Why does it have to be so difficult?

Here are some other food packaging items that drive me crazy:

The plastic film covering, beneath the lid, that clings to the rim of sour cream tubs and yogurt containers. (Those plastic lids aren’t so easy to pry up, either.) I usually have to grab a knife to slit them open, because I cannot grasp the longer edge you’re supposed to use to strip the film away.

The tight foil covering of my calcium chews. These come wrapped individually, with neatly turned ends that are folded the way you wrap a birthday present. Picking those ends up with what’s left of my finger nails takes patience, to say the least.

Plastic screw tops with perforated extensions that twist off when you first open the jar. Usually, I need to wear a pair of rubber dish gloves to be able to hold on without my hand slipping and twist without injuring my skin. I have an adjustable jar opener, but it doesn’t always do the job as well as it should.

Sealed plastic bags for items like shredded cheese that have molded ziplock seals. The idea is that you can reseal the bag after you open it the first time. Problem is I can never pry apart the ziplock, so I inevitably cut it off and put the bag in another plastic bag with a usable ziplock—or just use some other clip to keep it shut. Just give me a bag that opens easily, please.

Sealed plastic wrappers inside sealed cereal or cracker boxes. I can never, ever, pull them apart neatly. It seems like these wrappers used to open easily, but now they are made of some kind of heavier plastic that just won’t yield to my fingers. So I usually ask Al to do it for me.

He, of course, is my secret weapon for all of the above and more. Sometimes I wonder if I depend too heavily on my husband for help with all of these simple tasks. I know I should find more adaptive tools to tackle hermetically sealed packaging. But then I have to have those tools handy every time I try to open something. Which is a nuisance.

Some days, like the other night, when I was rushing to make dinner and had to keep struggling with food wrappers, it’s just plain tiring. And wasteful. I do my best to recycle, but some of that packaging has nowhere to go but the trash. We live in a litigious, germaphobic culture where shrink-wrapped cucumbers are the norm. Even if my hands worked perfectly, there has to be a better way.

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.

Image Credit: Ajax Great

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Filed Under: Body, Mind, Sight, Smell, Taste, Touch Tagged With: adaptive tools, finger ulcers, hands, managing chronic disease

Hands On

Evelyn Herwitz · July 7, 2015 · 3 Comments

How did it get to be July, already? With Independence Day behind us, summer is really here. It’s sunny and lovely and warm, and my hands are happy. I’m down to two bandages for my digital ulcers, one on each thumb. Always remarkable this time of year when I can feel with most of my fingertips.

photo-24This has been especially helpful because I’ve been sewing dresses. We’re getting ready for vacation, traveling through Europe to mark our 30th wedding anniversary (last December) and to do some research for a novel I’m writing.

It’s been unseasonably hot there (no complaints from me, although I’m encouraged that the forecast does not include temps upwards of 100 F, which was the case this past week). Dresses, as a friend observed, are easy. You don’t need to figure out what goes with what. Just slip one on, and you’re ready for the day.

One of the great joys of sewing is feeling luscious fabrics as your create your outfit. I’m working on a pattern for a wrap dress, and I found a buttery soft, beautiful rayon matte jersey print to sew.

I’ve learned from many mistakes that it’s best to test the pattern and any alterations first, before risking the good fabric, and I found some black and white cotton jersey in my fabric stash—perfect for experimenting.

So now the test garment is completed, and it looks and fits well enough to take along on the trip. I cut out all the good fabric and began constructing the second version on Sunday. It sews and serges like a dream, and I’m on schedule for finishing before we leave.

Best of all, my hands are fine. Despite whacking one finger on my serger and pricking another with a pin, they feel good as I write. I sew mostly by machine. The serger, which sews, trims and overcasts seams all in one step, is a tremendous help, saving time and extra hand motions. Even though it requires a lot of care when threading (and can be persnickety if I miss a step), it is a real boon. My other essential tool is a good pair of bent-nose tweezers, which helps with all the tiny manipulations I can no longer do with my fingertips.

I was marveling at the fact that my hands aren’t sore after all that work, and then I realized that fewer bandages really do make a difference. I’m so used to having at least four or five fingers wrapped to protect sore ulcers that going bare is full of surprises.

Travel will undoubtedly cause me to revert to more digital protection. I have all my supplies plus antibiotics ready, just in case. But in the meantime, I am savoring the freedom and enjoying the feel of wonderful fabric. It’s been a long time since I’ve been able to sew this much, successfully—a real summertime treat.

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.

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Filed Under: Body, Mind, Touch Tagged With: adaptive tools, finger ulcers, hands, managing chronic disease, mindfulness, resilience, travel

The Right Tools

Evelyn Herwitz · December 23, 2014 · 4 Comments

My dad had a saying: “Any problem can be solved if you have the right tools.” He was something of a tool geek. In the basement of our home, hanging on a pegboard over his workbench, he had every kind of tool imaginable: crescent wrenches, socket wrenches and pipe wrenches, neatly arranged from small to large; flathead and Phillips head screw drivers; a carpenter’s hammer, tack hammer, ball peen hammer, rubber mallet; an electric hand drill with a full set of wood and dry-wall bits; rulers for every task.

Then there were his electronics bench, with its oscilloscope, soldering iron and various pliers; the table saw, with a variety of sharp-toothed steel discs hanging nearby; the drill press; the radial saw. Wooden shelving he’d built was filled with nuts, bolts, screws and nails in baby food jars, each labeled and ordered by size and type. And that’s just the short list.

I found it fascinating. I was his little helper, handing him the right transistor to build his latest Heathkit or the proper socket wrench to adjust his tractor snow-blower.

I learned a lot about how to make things (and how to get out of his way when he inevitably made a mistake and started cussing) and a deep respect for the value and care of good tools. Although my hands don’t work well enough to be able to build my own bookcases or tables or chests of drawers, I understand what’s required and how to envision the project and its implementation.

I also learned an approach to problem solving that has carried me a long way in dealing with scleroderma. Just because my hands don’t work properly doesn’t mean I can’t do what I need to do. I just need to figure out a different approach. And, sometimes, get the right tools.

Dad died five years ago, this past week, on the fifth night of Hanukkah. And so it was exceptionally fitting that in the mail on Saturday, a large box arrived from my Virginia brother-in-law, with a Hanukkah gift—a tool I’d been needing for years.

Saul had visited us in October. While he was here, he noticed I was having trouble opening cans. It’s ridiculous, really. I know I’ve needed an electric can-opener for years, but just never got around to buying one.

Sure enough, when we opened the box, inside was a sleek, black-and-chrome electric can-opener with an easy-lift handle. I tried it out Sunday night. Voila! No more sore fingers from struggling with a manual can-opener, ergonomic design notwithstanding. The can of plum tomatoes turned quickly and quietly, the lid came off easily, and there was no messy blade to clean.

It’s amazing how this device has instantly made my life easier. Especially when I have intransigent ulcers, as I do right now, opening cans has become quite an ordeal. If my fingers slip, it’s extraordinarily painful. Sometimes I’ll turn the manual crank all the way around the can, only to have to repeat because the blade didn’t cut all the way through the metal lid. There have been many times I’ve had to use rubber gloves or a towel for extra padding on the handle, to be able to manipulate the can-opener. Sometimes I just can’t open the can at all, and I have to wait for Al to be available to help.

Why it took my brother-in-law’s thoughtful gesture to turn this around, I’m not sure. Sometimes you just get so immersed in the way you’ve always done something that it’s hard to muster the energy or awareness to fix it.

So, I repeat, in Dad’s memory: Any problem can be solved if you have the right tools. And I’ll add this caveat: It helps if you’re paying attention. Thank you, Saul.

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.

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Filed Under: Body, Mind, Touch Tagged With: adaptive tools, finger ulcers, hands, managing chronic disease

In Transit

Evelyn Herwitz · March 25, 2014 · Leave a Comment

I’m heading to Chicago today, my first long distance business trip since I started my consulting practice just over four years ago. The sun is out, the skies are clear, at least for now, and it looks like I’m going to make it out of Logan before a Nor’easter barrels up the coast this evening.

After all, it is officially spring in New England. Why not more snow?

I’m looking forward to the trip and meeting my clients in person. Wonderful as it is to talk over FaceTime and Skype and GoToMeeting, there is a limit to how much you can pick up from an image on a slice of computer screen. So now we’re going to spend two days digging into content and messaging for a revitalized corporate website. It’s a puzzle that I love to solve, for some great people working to improve the quality of healthcare outcomes.

Four years ago, as I searched for job openings after I had to shut down my marketing department of a dozen-plus years because the college where I worked was in dire financial straits, I had no clue where I was headed. It’s been a long, slow haul, starting up a consultancy, and this is a very sweet watershed moment.

But before I get too comfortable savoring my progress, there is the bigger problem to solve: how finally to join the carry-on luggage club.

Up to now, I have always checked my bags on flights. I am very wary of straining my hands when I travel, lugging a suitcase, even on wheels, lifting, pulling, hoisting. But the last time I flew, my luggage got lost at JFK and took nearly a day to arrive on my doorstep. Plus, there is the added $25 luggage fee, both ways. And the time factor.

So I’m taking the plunge. On Sunday, I spent the afternoon searching for the right 9” x 14” x 22” suitcase that I actually can manage. I researched on the Internet. I tried various bags, testing zippers, pull handles, interior pockets and overall touch and feel.

With luck, I found the perfect suitcase, olive green, with sturdy construction, padded straps, full swivel wheels so I can pull it sideways as well as behind me, and a handle that lifts with the lightest touch of my thumb. All the zipper pulls are either flexible or have comfortable, soft tabs. It was an investment, but for my hands’ well being, worth the money.

Then there was the issue of all the creams and ointments that I need to manage my finger ulcers and skin. This led me to the discovery of GoTubes, which are squishy, washable plastic tubes in 1.5 and 3.0 oz. sizes that meet FAA 3-1-1 standards for carry-on. The tubes have wide mouths, so it’s easy to scoop in the creams and squeeze them out. No waste.

My third find was a soft, large purse with magnetic clasps, so I don’t have to use zippers to remove all the stuff you need at the last minute to get through security clearance. It has a center, flat zippered pocket (only one zipper to deal with) for my laptop and deep side pockets on either side, so I don’t damage my hands when digging around. The straps are soft and wide enough to stay put on my narrow shoulders. All essential criteria for ease of travel and minimal skin strain.

It’s been a scramble to get everything together in time and finish all my work before departing. Last night I was cursing at a pair of black wool crepe trousers, another great find but two inches too long. Nothing like fumbling with a needle and black-on-black thread that you can barely see because your reading glasses need a stronger prescription and your fingers can’t feel the thread as you hem. The evening was saved by my local public radio station, playing an hour of Aretha Franklin’s best hits, because today is her 72nd birthday.

So, happy birthday, Aretha. I’m off to Chicago. Have a great week, all!

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

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

Under Construction

Evelyn Herwitz · August 27, 2013 · 4 Comments

For more than a year, I’ve been working on perfecting a pants pattern. The goal is to create a properly fitted master pattern that I can sew in different fabric any time I need a new pair of pants—no more trying them on in stores, which I hate doing because it’s so difficult to find a pair that fits properly, is made of good quality fabric and is affordable.

I do some fitting and sewing, then I stop for months, then I pick up the project again and work on it some more, then put it aside once again. I made one pair of pants from the pattern that didn’t fit quite right, went to a master seamstress for help refitting the pattern, got some more fabric to try it again, cut out all the pieces, then sat on the project for another stretch.

Here’s the reason I keep stopping and starting and dragging this out: My hands can’t sew the way I used to, and I’m afraid of messing up, so I avoid it.

I discovered sewing when I was about five years old. Someone, perhaps my mother, gave my sister and me matching sewing boxes; hers was white with purple trim and mine, white with blue. Each held a packet of needles, spools of different colored thread, a red tomato-shaped pin cushion, some pins and a pair of scissors.

I was in heaven. I began hand-sewing clothes for my Girl Scout Brownie doll, whose name was Shirley, out of old fabric scraps. Her fanciest outfit was an orange corduroy coat with uneven sleeves and a white button. Shirley didn’t seem to mind the amateur workmanship, though I was frustrated that the coat didn’t come out as I’d planned. But I kept on sewing.

As a teen, I learned to sew my own clothes by machine with guidance from a friend’s mother. My first effort was a robin’s-egg-blue jumper with a scoop neck and white braid trim. It had a 22-inch zipper in the back, which I tried to insert unsuccessfully seven times, after which my friend’s mother did it for me. This outfit I wore with a yellow print store-bought blouse at my junior high Girl Scout troop’s fashion show. A few years later, I sewed my senior prom dress out of a black rayon print and inserted a hand-picked zipper.

With practice, a lot of mistakes and some successes, I got better at sewing technique. When Al and I married, I wore a white satin and lace gown that I made myself. I hand-stitched nine yards of lace trim onto white tulle for the veil. When I finished, my fingers were very swollen. A few weeks later, I learned I might have scleroderma.

Though my hands continued to deteriorate, I was determined to keep sewing and made many outfits for my two daughters when they were young. But I have not sewn for myself nearly as much as I would have liked in the years since.

For one thing, I have a lot of fingertip ulcers swathed in cloth bandages, which makes it hard to feel the fabric and manipulate it. Even with a threading tool, I have trouble inserting thread into a needle. Pinning fabric and sewing by hand are very challenging. My hands get tired. I bang my knuckles on the edges of my machine when I’m not paying attention.

But I’m not willing to give up. I have a collection of adaptive tools—an ergonomic rotary cutter to relieve pressure on my wrists, bent-nose tweezers for gripping and pulling, a Y-shaped gadget that I can use instead of my fingers to maneuver fabric through my sewing machine, a 25-year-old Viking Husqvarna that has never failed me. I love paging through sewing magazines and handling fabric. I still design outfits in my head, a favorite pass-time since childhood.

So this Sunday, I pulled out the languishing pants pattern, already cut out of khaki cotton gabardine, sat myself down at the dining room table and began marking the pieces with white chalk to prepare them for construction. The first step involved sewing a fly-front zipper. It was really hard, requiring hand basting through some thick layers.

But I did it. Slowly. When I messed up, I removed the stitches with a seam ripper and did it over. And to my great surprise and pleasure, it came out as close to perfect as I could ever expect, even limited by a pair of hands that don’t always cooperate with my head.

I’ll keep plugging along. Who knows? Maybe this pair will actually fit right. And if not, I’ll just make more adjustments and try again, even if it takes me another year to finish.

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.

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Filed Under: Body, Mind, Sight, Touch Tagged With: adaptive tools, finger ulcers, hands, resilience, sewing

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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…

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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.

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