Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

managing chronic disease

‘Tis the Season

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Thanksgiving snuck up on me this year. Not that there weren’t enough hints. Two weeks ago, as I sat in my optometrist’s office, Christmas carols wafted through the waiting room. Since then, I’ve noticed Santa statues guarding the aisles at CVS, holiday wreathes decking the doors at Home Depot and Black Friday sales clogging my email.

Oh, wait, was I talking about Thanksgiving?

Hard to know which season it is, or to remember what the holiday is supposed to be about. You don’t even see those hokey turkey decorations anymore in stores—you know, the ones with the cardboard heads and tails connected by honeycombed crepe paper bodies—or garlands of fake autumn leaves. As soon as the pumpkins and Halloween candy go on mark-down, the Christmas decorations come out. Given the commercial Black Friday competition, I’m betting it won’t be long before we’re confronted with holiday mega-sales starting November 1.

The weather is no help, either. Although we avoided the crazy snow that whomped Buffalo this past week, the polar vortex that swept through New England threatened to turn November into January. I now have seven ulcers on my fingers and one persistent sore on my inside right ankle. I am going through bandages like confetti. Some of these ulcers developed weeks before the freezing weather, but several emerged in the past few days, despite my best efforts to protect my hands. Way, way too cold for this time of year, and my fingers are not happy.

A reader recently suggested taking a vacation in Hawaii. This idea has some appeal.

Even as frigid temps made me cranky last week, however, we’re now enjoying a mild interlude before a Nor’easter that could bring at least a half-foot of snow by Wednesday evening. Thank goodness I already put the snow tires on my Prius.

Snow or no snow, I’m looking forward to the approaching holiday. Every year, we get together with our cousins for a wonderful meal, football games on the flatscreen TV and the comfort of family and friendships. And I have much to be grateful for. . . .

Our daughters are both thriving in their respective graduate school programs.

I have a full plate of work for wonderful clients.

We have a beautiful home on a quiet street with good neighbors who wave and say hello as I walk Ginger around the block.

Ginger is 16 and still has “pep in her step,” as our vet notes, with amazement.

Al has made it through yet another sale of the hospital where he is a social worker, and despite the less-than-desirable health insurance provided by his new employer, we have managed to cover our deductibles for my medical expenses (at least, so far).

I’m holding my own with my health. It never gets easier, but I have enough experience with scleroderma that I can figure out work-arounds when my hands aren’t cooperating or my feet need extra support or my body just needs more rest or time to do whatever it is I’m trying to do.

I am blessed with loving family, good friends, a supportive synagogue community and enough resources to live a modest, comfortable life. I have access to some of the best medical care in the world, right in my own backyard. I work for myself, set my own pace and own my own time.

And I can write.

Time for Thanksgiving, indeed.

Photo Credit: smilla4 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.

In Praise of Naps

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It’s 2:30 in the afternoon on a dreary, rainy Monday, and my brain is going on strike. I have spent the morning meeting with clients near Boston, which required more than two hours of commuting in a steady downpour, followed by an hour-long phone appointment when I got back home. The conversations were all meaningful, stimulating and productive.

But now I can’t fathom the idea of sitting at my desk for the rest of the afternoon, and I have a lot of work to do. So I set the timer on my iPhone for 20 minutes, lie down on the couch with a cozy blanket, and go to sleep. I wake up a few minutes before the timer sounds, totally refreshed. My mind is completely clear. What a gift.

Years ago, when I was in grad school, I first discovered my mental low point between 2:30 and 3:30 p.m. (unfortunately, back then, I had a class during that hour, and even though I found the content fascinating, I struggled to stay awake). This circadian cycle is offset 12 hours later—if I wake around 2:30 a.m., I can’t get back to sleep until at least 4:00 a.m.

When I was in the early stages of scleroderma, freelancing as a writer, I had to take a nap nearly every afternoon. The disease was exhausting, and there was simply no way to get through the day otherwise. It’s been decades since that phase, and even as I’m often tired mid-afternoon, I usually power through. Often, it helps to walk Ginger. Fresh air works wonders for the mind.

But I realized from my experience Monday afternoon that it pays dividends to listen more closely when my body is trying to tell me to lie down. I’ve resisted naps for a long time, in part because I don’t want to lose precious hours to sleep, and in part, because I don’t want to backtrack to those early years of illness.

Twenty minutes is a perfect interval for a nap. I’m tempted to call it a “power nap,” but that phrase suggests you need to justify napping, so as not to seem lazy. Really, it just felt good—not too short to make me feel even more weary, and not to long to make me feel wasted for the rest of the day. I returned to my desk, ready to get to work, and made it through my entire task list with great efficiency.

I don’t expect to take a nap every afternoon. It all depends on what I’m doing and how I’m feeling. But I certainly won’t think of it as slacking off or backsliding with my scleroderma. I will consider it a worthwhile investment in my health, well-being and ability to do what I need to do. Not bad for 20 minutes.

Image Credit: “Our Sleeping Beauty,” by J.S. Pughe (1870-1909), illus. from Puck, vol. 41, no. 1041 (1897 February 17), cover. Library of Congress Prints and Photographs Division.

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.