Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Around the Block

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I’m not yet used to earlier sunsets. It always takes me a few weeks to adjust when we turn back the clocks for standard time. On Friday afternoon, I was running around, trying to finish errands before sundown, which heralds our Shabbat observance, and just made it home as dusk settled. Whew.

Back to my desk on Monday, I lost track again, this time because I was immersed in my writing, only to realize it was nearly 4 o’clock in the afternoon and I had not yet walked Ginger. I should have taken her out when it was brighter and warmer after lunch, but she needed the exercise. I did, too.

So, despite the darkening, chilly fall afternoon (for me—others I passed were in fleece vests or zip-up jackets), I donned my down winter coat and a hat, clipped Ginger’s leash to her collar and headed out the door.

A lungful of fresh air immediately helped to clear my brain, woolly with words. Ginger paused by the huge pile of dried leaves in front of our curb to explore the many and varied, fascinating scents. Our walks take longer this time of year, until all the leaves have fallen and city streets are swept clean. I have to urge her to keep walking so my hands don’t go numb.

“That dog is amazing,” commented our neighbor, walking her puffy little pooch in the opposite direction. Our white-faced golden is 16, but still can pull me down the street if she has a mind to. My neighbor’s dog decided to lie down in the street and watch us, but Ginger, whose nose is better than her ears and eyes, ignored it and kept on snuffling, leading me slowly forward.

Around the corner, two boys in shirtsleeves shot hoops in a driveway. Everything glowed with a deep orange patina—the piles of rakings along either side of the street, the Norway maples that still clung to a few golden leaves, Ginger’s fur, the errant basketball that rolled across our path. “How are you?” asked the boy as he ran to retrieve it. We exchanged pleasantries, and he loped back to his game.

A friend wisely observed over the weekend that all the frightening headlines (Ebola! ISIS! Washington Gridlock! Climate Change!) that describe a world in seeming collapse don’t really square with everyday experience. Most people are good. Many strangers can be trusted. A 12-year-old boy can be polite to a woman walking her old dog around the block.

As we rounded the next corner and headed up a slight hill, the sky turned salmon and violet. For a few astounding seconds, the trees and leaves seemed infused with an etherial, rose light. If I hadn’t left the house with Ginger at the exact, too-late moment, kicking myself for forgetting about the time change, I would have missed it.

Home again, dark settling in, I rubbed Ginger’s ears and thanked her for inspiring me to get out of the house. Sometimes the best part of the day is the part you wanted to avoid.

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.

Au Naturel

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Every fall, as the days grow shorter and the temperatures sink, I start looking for a new sweater to add to my collection. This can be a challenge. While there are plenty of warm-looking sweaters on store racks, especially as the holiday shopping season fast approaches, you have to be a fiber detective to be certain they’re really worth buying.

The less expensive the sweater, the more likely it’s made of synthetic materials, such as nylon or acrylic. Pretty as that pullover or cardigan may appear in the store, and attractive as the price tag may seem, it’s usually not worth the purchase. Not only do synthetics wear out faster with repeated washings—they really don’t keep you warm.

I’ve learned from many buying mistakes that polyesters and their man-made fiber cousins trap perspiration, which only exacerbates my Raynaud’s—chilling my body and numbing my hands.

So I always read labels inside the garment before buying a sweater. My latest find was a wool/alpaca blend, three-quarter-length taupe sweater by Ellen Tracy for $49 at TJ Maxx. I wore it for several long days over the past weekend and stayed comfortable through hot/cold cycling of heating systems in private homes and board rooms. Definitely a worthwhile purchase.

A good wool sweater, with proper care, will last for decades. I have three long-sleeve cashmere sweaters that I bought at Bloomingdales about 20 years ago that are only now wearing through at the elbows. They were investment buys back then, but I certainly got my money’s worth of wear.

Best fibers for sweaters, in my book, are wool and cotton. Rayon, which is man-made but derived from wood pulp, and silk, are favorites for blouses. Linen is also worth considering as long as you don’t mind wrinkles. All natural fibers have the wondrous ability to wick away sweat and allow your body to breathe—essential for moderating body temperature and avoiding chills.

Layering, of course, is the other key to staying comfortably warm in winter. But layering synthetics with natural fiber garments essentially traps air and cancels out any advantage of the breathable fabric.

So here’s to all those wonderful, warm clothes derived from nature’s bounty. Thank you, sheep, for your wool that keeps my body from going numb this winter season—and many winters to come!

Photo Credit: kygp via Compfight cc

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.

Social Graces

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Who ever invented the practice of eating at a party while you’re standing up? I enjoy social gatherings with friends and family for special occasions, but I am a klutz when it comes to balancing hors d’oeuvres plate, napkin, utensils, plus a drink, all while milling about in a crowd and chatting.

It’s gotten to the point that I often stick to just a glass of wine or seltzer, and pass on the finger food. I can’t eat without drinking, or I risk problems swallowing. And I can’t manage the plate and the drink with my hands, and still eat, without risk of dropping everything. As for the finger food, with so many bandages, I don’t like eating with my hands, anyway, especially if the food is drippy or the least bit oily.

This is not the most serious problem in the world, certainly. But it is a challenge, and I do feel awkward unless I can find a place to sit and enjoy the nosh, or at least one of those high tables that are designed for standing and eating at a party.

Portable food courses are, I suppose, just another way our casual lifestyle finds expression. Why be constrained by formal seating arrangements when it’s fun to mingle and eat at the same time? When I was younger and my hands worked, this was fine.

But the older I get, and the less nimble my hands become, I really do prefer a sit-down meal. Even party buffets, when you take a plateful of food and find yourself a seat on the couch or a chair, create coordination challenges. Balancing a plate on my lap while trying to manipulate knife and fork, especially if they are made of plastic, is a recipe for a spill. It’s hard enough to grasp the thin plastic utensils, let alone apply enough pressure to cut food with the so-called knife, without sending the food skidding onto my good clothes or the floor.

That said, my solutions for party-eating logistics are as follows:

  • Don’t load up your plate. Less to cut, less to spill and, of course, less risk of overeating.
  • Find a quiet corner where you won’t get jostled while you eat. This also addresses a second issue having nothing to do with scleroderma and everything to do with aging—I have increasing difficulty hearing what someone is saying when there is a lot of background noise.
  • Even better, find a seat in a quiet corner with a table where you can rest your drink while you eat.
  • Best of all, invite your closest friends at the party to join you in your above-mentioned quiet little corner. That way you can enjoy your food, your drink and a good conversation. If you spill something, your friends won’t care. And they’ll help you clean it up.

Image Credit: Le Sortie de l’opéra en l’an 2000, Albert Robida, c. 1882, Library of Congress Prints and Photographs Division, courtesy publicdomainreview.org.

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.

Clean Hands, Warm Heart

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Somewhere I once read that Donald Trump’s aides carry alcohol wipes for him, so he can clean his hands after every handshake. I don’t know if it’s true, but he has a reputation as a germophobe, so I wouldn’t put it past him.

sanitizerMuch as I don’t want to have anything in common with The Donald (although the equivalent of even a small percentage of his fortune would certainly be nice), I, too, am in the habit of cleaning my hands frequently when I’m in public.

In my case, however, I have a good excuse. I have far too many digital ulcers that provide super highways for bacterial infections, if I’m not careful.

So I am. Careful. Almost to the point of being obsessive/compulsive.

Recently I’ve been using mass transit more often when I have commitments in downtown Boston. Driving and parking can take up to an hour-and-a-half each way, sometimes even longer, depending on traffic. Taking the train enables me to get work done instead of wasting all that time driving. It’s also much more relaxing. But I never travel without my little bottle of antiseptic hand-cleaner.

I’m always cognizant of when my hands touch surfaces that many other hands have touched—like door handles between train cars or escalator handrails on the way to the T (Boston’s subway) or those straps or metal poles that you need to grab in order to stay upright when the subway jolts and jerks. When I arrive at my destination, out comes the hand-cleaner.

Other points of contact that make me wary: ATM consoles, those ubiquitous ball-point pens that are always handed to you for signing your credit card slips, doors to public buildings and magazines in doctor’s waiting rooms. Once I’m back in my car, out comes the hand-cleaner. I also keep my own pens at the ready.

Public restrooms, of course, are high on the list. I recently saw a video clip of The Doctors talk show that discussed where the most germs reside. It’s not the first stall, by the way. We all avoid that one. It’s not even the toilet seat. It’s the toilet paper dispenser. Think about it. Then there’s the door handle on your way out. So, my latest solution is to pour some hand-cleaner in my palm as I leave and rub it into my hands as I walk. (Washing my hands with soap and water doesn’t work because I have too many bandages.)

If all of this sounds a bit paranoid, well, maybe so. But I have had far, far too many serious bacterial infections in my fingers over the years. The pain can be excruciating. Sometimes I have ended up on IV antibiotics for months. Thankfully, it’s been a long time since that’s happened, and part of the reason, I am certain, is that I’m so careful.

My method is not foolproof. And I go through a lot of hand-cleaner. But the bottom line is that it certainly doesn’t hurt. And as long as I’m not insulting anyone by whipping out my hand-cleaner after a handshake, then why not? Minimizing infections—and excessive use of antibiotics—is well worth being a tad obsessive. Just because you’re paranoid doesn’t mean that bacteria isn’t out to get you.

Photo Credit: coolmikeol via Compfight cc

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.

Just a Cold

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I’m kvetchy. I have a cold, and I feel crummy. I know there are many more serious maladies out there, and this too shall pass and all that, but right now, my nose is stuffy and I’m schlepping around with a box of tissues and a plastic bag in hand because I’m going through the tissues so fast, and I’m coughing and sneezing and, and . . .

4048824638_c249f3e4e6_oOne of the things I hate most about colds is how they set off my Raynaud’s and joint aches in the first 48 hours. I also hate struggling to breathe at night and not getting a good night’s sleep. My nose is so narrowed by scleroderma that nasal congestion can be a real challenge.

And I hate being in the middle of cooking and realizing my nose is dripping and having to stop what I’m doing, grab a tissue, blow, toss it, clean my hands so I don’t make the rest of the family sick, then go back to what I was doing, only to have to repeat the same rigamarole a few minutes later.

And I hate coughing so much that I can’t finish the meal I just cooked.

But most of all, I hate the fact that everyone refers to this condition as “just a cold.” Because minimizing a respiratory virus to “just a cold” status means that everyone walks around with “just a cold” and gives it to everyone else, instead of staying home and taking the time to get healthy. And not spreading their germs.

When I was a marketing director in higher education, I used to urge my staff to go home if they started sneezing or coughing a lot, to get better and to spare the rest of the department. Sometimes this took a bit of persuasion, because we’re all conditioned to keep working with “just a cold.” Usually I prevailed, however, and most everyone in our open office space appreciated it. And stayed healthier, as a result.

Being cognizant of how we’re not doing anyone any favors by walking around when we’re sick is particularly relevant in light of the news media’s current obsession with the Ebola virus. Ebola is often fatal. It is scary. It is transmitted by direct contact with an infected person’s bodily fluids or contaminated objects, like needles or syringes.

But Ebola is nowhere nearly as contagious in public spaces as influenza, which can be deadly and is spread by sneezing and coughing. By people who don’t bother to stay home when they mistake the flu for “just a cold.”

Consider this a public service reminder to get your flu shot if your immune system is compromised or you have asthma or other respiratory complications. Or any kind of chronic illness.

I’m going to get my flu vaccination this weekend, at a free clinic offered by my health care provider. That is, assuming my “just a cold” has finally cleared up.

Meanwhile, I’ll be loading up on fish oil and Vitamin C and hot tea and soup. And kvetching.

Thanks for listening.

Photo Credit: stevendepolo via Compfight cc

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.