Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

hands

30th

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December 9, 1984. It is sunny, unseasonably warm for Massachusetts. A good omen. I’m getting married today. It’s my second time around, his first. We’ve both been on our own for several years, and now, after knowing each other for just about nine months, we’re taking the big chance that our instinct is right and we’re meant to spend the rest of our lives together.

Our rabbi—who was Al’s Hebrew School teacher growing up, and my mentor when I landed in this community after my divorce—is performing the wedding. He’s responsible for our meeting. (He gave Al my name and number, then later apologized for not asking my permission first. We’ve laughed about this many times, since.)

After an eventful ceremony (one of our friends, who is helping to hold up our wedding canopy, faints, and my dad steps in to take his place, but we’re so absorbed in each other we don’t notice), after a great party with kosher Chinese food and Klezmer music, we drive to Cape Cod for our honeymoon. We discover the magic of Nauset Beach, in December, at night. The sand is phosphorescent and sparkles in the moonlight.

Thirty years later. A Nor’easter is whipping up the coast, but fortunately it’s bringing only rain and wind, not mountains of snow. We’re going out to dinner tonight to celebrate our anniversary. On Friday, our daughters are coming home from their respective graduate programs for Shabbat dinner, the first time in months we’ve all been together, just the four of us, for a meal. Their idea.

I feel so fortunate to be writing these words. Simple things, dinner out with your husband of three decades, Friday night dinner at home with your grown daughters. We’re thinking about what else we might do, later this year, to celebrate coming this far together. But right now, this feels just right.

Our first year together was fraught with medical crises. Only a month after our wedding, I learned I had some kind of auto-immune disease—maybe rheumatoid arthritis, maybe lupus, maybe scleroderma. Just as I had put my life back together again, it all seemed to be unraveling. Later that first year, Al’s mom had the first of two strokes. Al wore himself out, running back and forth to the hospital to visit her, working and leading a youth group. He came down with mononucleosis, his spleen ruptured, and he needed emergency surgery. When they opened him up, the surgeon found six pints of blood in his abdomen. He was held together by a blood clot.

Al came home from the hospital the day before our first anniversary. In the decades that have followed, we’ve each had our share of medical scares, and we’ve seen Al’s mother and both of my parents through the illnesses that eventually took their lives. We’ve been in and out of hospitals and ER’s with our daughters, too.

But we’ve been lucky. So very lucky. With all the medical challenges, with all the stresses of raising a family and keeping our daughters safe in a troubled world and providing them with a good education and making ends meet and finding work and surviving layoffs and starting my own business—with all of that, and much more, we’re still here. Together.

Over the weekend, Al and I decided to sort through all the books, the many, many books in our home, to give away the ones we no longer want and make room for the ones we want to keep. I can’t take books off the shelves easily. It hurts my hands. So Al did all the moving and shuffling and reorganizing, while we talked through what should go where. Do you want these alphabetized? he asked. Yes, but within categories, I said, like poems, plays, essays. Ok, he said, how about this way? We worked like that for several hours, Saturday night and Sunday, too. We can now find all of our books. But the best part—it was fun.

Maybe it’s taken all that’s come before to be able to sit back and appreciate the simple beauty of being able to organize a few thousand books with your husband on a cold wintery weekend, when your hands don’t work, and his do. It’s the kind of deep, abiding, dependable love you can only discover through traveling a rough road together.

Marriage is hard work, especially with a chronic disease as an unwanted third partner. I wish we could have gotten to this place without my scleroderma. But maybe there was no other way. And I’m very grateful that we’ve made it this far.

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.

Time to Stop Typing

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I’ve been having trouble sleeping the past few nights. My finger ulcer keeps waking me up. Usually when this happens, I have an infection. But that’s not the case this time. The skin is just too raw on the tip of my right ring finger, but I need to type and do other tasks, and the ulcer keeps getting irritated.

Now, I should be grateful that, at least so far, I don’t need to start antibiotics. I hate taking them. But the good thing about infections, much as they hurt: antibiotics provide significant relief within about 48 hours.

My problem at present is that there’s no quick fix for this particular variant of ulcer pain. It’s like having a headache in my finger. The only cure is time.

Our fingers have an extremely dense concentration of nerve endings. According to a recent article in The Guardian, our fingers have so many nerve endings that our brains actually outsource some neural computations about object orientation and movement to our fingertips.

All of those nerve endings make it possible to distinguish a baby’s cheek from a scruffy beard, stovetop heat from freezer chill, a satin sheet from flannel. When you think about it, the range of our fingers’ neural intelligence is really quite astounding.

That neural density also accounts for why it hurts so damn much when we get a paper cut, or smash our thumbs with a hammer. . .or develop digital ulcers.

The only encouragement I feel right now is that I’ve had two other recalcitrant ulcers in the past few weeks that gave me the same trouble, which are now, thankfully, past the achey stage. I’ve noticed over the years that there is some kind of tipping point in the healing process, when my damaged skin cells seem to wake up and repair themselves in large enough numbers that the pain level recedes. This can happen overnight.

So I’m going to cut this short, give my sore finger a break, take some Ibuprofin and Tylenol (they work differently), redo my bandages, and—I hope—get some sleep. Maybe tonight’s the night my body will work its magic, once again.

Photo Credit: JonathanCohen 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.

‘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.

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.