Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

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I wore my long winter coat this weekend. Not the heavy-duty one, but the medium weight, good-for-when-it-gets-below-50F-degrees-coat. And a warm hat. And gloves.

Book of SnowflakesIt’s only the beginning of October, but I’m already pulling out my sweaters and sweatpants, fleece vests and scarves, wool trousers and skirts, as the temperature sinks. This is always the time of year when I feel a bit self-conscious about bundling up while my neighbors are still walking around outside in windbreakers. But I’d rather be warm and keep my hands from turning purple and numb.

According to the Old Farmer’s Almanac website (is it just me, or does that sound like an oxymoron?), this winter in New England will be “much colder than normal, with near-normal precipitation and below-normal snowfall.” Looks like we’re in for a bit of snow before the calendar year is over, then just a lot of frigid temperatures until mid-March.

That is, if you believe the Almanac’s predictions. They claim 80 percent accuracy.

We were discussing this with family and friends at Al’s cousin’s home over the weekend. Those who commute by car and park on city streets were rooting for the Almanac—less to shovel sounded pretty good after last winter’s snow emergencies. For me, however, the words “much colder than normal” are more forbidding than snow storms (until the snow piles so high there’s nowhere to put it).

My winter weather trepidations are tempered by living in a landscape so romanticized by Currier and Ives. New snow is beautiful. It’s clean and sparkly and magical. I always enjoy the mystery of the first snowfall of the season, how it transforms trees into spun sugar.

Nonetheless, snow, by definition, means the temperature is below freezing, and my body just doesn’t adjust easily to the shift. We’re not there, yet, but as I walked Ginger, our 16-year-old golden, around the block on a sunny, crisp fall afternoon this Sunday, I could feel the season’s change in the wind.

Was it still, technically, summer just about a month ago? I have more digital ulcers, more bandages. I’ve turned on the heat pumps to warm the first floor of our home while I write in my small office, just off the living room. I’m wearing long sleeves and a warm cardigan.

Snow or no snow, the idea of “much colder than normal” sends shivers throughout my body. Nothing to do but make sure I have enough layers and brace for whatever winter weather lies ahead. At least we still have the best of the fall foliage to enjoy for the next couple of weeks.

Would I ever move to a warmer climate? I don’t know. I love my home, my community. Much as I struggle with the temperature shift each fall (spring brings its own unique challenges, too), I love all four seasons here.

So, pile on the sweaters and boil up the oatmeal. Colder weather? Bring it on.

Image Credit: Illustrative plates from Snowflakes: a Chapter from the Book of Nature (1863), a collection of poems, extracts, anecdotes and reflections on the theme of snow and the snowflake.  See more: http://publicdomainreview.org/collections/illustrations-of-snowflakes-1863/.

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.

Photo Shoot

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On my desk, next to my computer screen, rests a black-and-white photo of me at age three, my braided hair in white satin ribbons. I’m wearing a plaid dress with puffed sleeves and a white Peter Pan collar, holding what I think was a stuffed toy deer, sitting in a folding chair in the back yard of our home. Like most little kids, I loved having my picture taken, and I’m grinning happily at the camera.

Not so, now. I don’t know at what point I began to hate having my picture taken. Probably sometime around the seventh grade when, like most teens, I started to feel too self-conscious about my facial flaws. Many women I know feel this way—we’re all far too aware of our imperfections in a society that values Photoshopped perfection.

But scleroderma adds a whole new level to my camera shyness. Recently, I needed an updated portrait. So I asked a friend who’s a good photographer if he would do the honors. We did the shoot outside in about 10 minutes, as he zipped through digital shot after digital shot and kept me laughing.

The next day, he sent me a set of images to review, most of me grinning at the camera. But as I scrolled through, my heart sank. Oh. My. Even after all these years with scleroderma, it is really hard to see how it has distorted my face. Friends who know me don’t notice, because I’ve had the disease for so long that the way I look is all they know.

But for me, it is still a shock. Although my skin has loosened somewhat with time, excellent medical care and a dose of serendipity, it remains abnormal. My wrinkles are not the fine lines and soft creases of my 60-plus contemporaries (even as I’m grateful to have wrinkles, because when the disease was worse in my 30’s, my face was tightening to the point that it was uncomfortable to blink). Rather, because my skin is still thickened, my wrinkles resemble corduroy welts of varying widths. My mouth is tight around my broad smile. The nostrils of my generous nose are narrow. My eyelids are too thick to open fully.

In short, I look a whole lot older and odder than I think of myself. I don’t care about the salt-and-pepper hair. I still have my teeth (well, at least, most of them). Maybe it was the natural lighting, which can be quite unforgiving. But. Wow.

One of the hardest things about this disease is how it damages your looks. It is deforming. There is just no way around it. When I look at myself in the bathroom mirror, I often am not wearing my glasses, so the impact is softened—a bit of self-delusion, perhaps, but it also makes me feel better.

The reality is, I’m always still hoping against hope that I’ll get my face back. I wonder what I’d look like without scleroderma, just normal aging. What would it be like to once again have a relaxed mouth, a nose that isn’t pinched, eyelids that open all the way? What would it be like to have gentle lines rather than deep creases?

I know this ruminating is both self-defeating and self-absorbed. Beauty is only skin deep, and all that. But there is a real loss involved here, and it takes a long time to make peace with the fact that scleroderma ages you prematurely and is so unkind to whatever lovely features you may have once had. You need to dig deep to summon self-respect and compassion for who you are, for all that you are, despite damning social standards.

In the end, I selected the most forgiving image and forwarded it on. The pictures told the truth. This is how I look. The contrast between what was and what is remains in my head, and those whom I love and who love me don’t care.

Friday evening, I sat on the living room couch as Al gave me a much-needed neck massage—too many hours at the computer. I told him about the photos. “I look so old,” I said, discouraged.

“You don’t look old to me,” he answered, softly. For some men, this would be a throwaway line. But not Al. He meant it. And that made all the difference.

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

Tale of the Tooth

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I hate going to the dentist.

It’s not that I don’t like the professionals who take care of my teeth. They are all wonderful, dedicated people. It’s just that there is no easy way for anyone with adult-sized fingers to maneuver around my teeth and gums without painfully stretching my mouth. The skin around my lips is simply too tight for me to open wide.

So, this past week, I was not looking forward to the visit to my periodontist for an implant—the second step of three to replace a molar lost this past spring to root resorption, a rare and very frustrating, painful complication of scleroderma.

This is the second time I’ve had to have a tooth replaced because the root resorbed. The last episode occurred maybe five years ago, and the tooth came out easily because most of the root had dissolved. But drilling to create room for the post was awful—I apparently have a dense jaw, a good thing. However, it took what felt like an hour to drill deeply and widely enough to accommodate the post. Even my periodontist remembered the ordeal.

I prepared for the appointment by shoving it out of my mind. Extracting the tooth back in the spring was no fun at all. It took more than an hour of drilling, breaking the molar into segments to get it out, long roots and all (the root had resorbed sideways into the nerve, rather than lengthwise).

Tuesday arrived, and I was even a few minutes early for my appointment. But construction work in my periodontist’s office building over the Labor Day weekend (so much for Labor Day) had left the practice with no running water when they arrived in the morning, and resolving that issue delayed all appointments. So I buried my nose in a fashion magazine as a distraction.

An hour later, it was finally my turn. Time to lie back, with my head lower than my feet, stare at the ceiling and await Novocaine. Always at this point in any dentist visit, when I know they have to stick needles in my gums, I have to focus on my breathing to manage my panic impulse.

Fortunately, they used a topical anaesthetic, first, which reminded me of Smith Brother’s cherry cough drops (used to love those as a kid, but no more). It dripped into the back of my throat, giving me the icky sensation of not quite being able to swallow, but it successfully numbed my gums enough to reduce the bee-sting pain of the Novocaine shots. Soon the slicing and drilling began.

This is where things got dicey. My periodontist is a real pro, and he understands the constraints of my mouth, but there is just no way to avoid pulling at the corners. Between the tools and the drill and the suction and probing fingers, I was stretched to the max, with no give. It hurt, even with Vasoline on my lips to ease the strain.

Mercifully, this time the drilling went more easily, and the whole procedure, from shots to stitches, took about an hour. I drove myself home, my mouth still very numb, walked in the door, got changed into comfortable clothes, swallowed a Vicodin, got an icepack for my jaw (even with Raynaud’s, this felt good, surprisingly), and lay down on the couch for the rest of the afternoon.

By the next day, I was able to manage the pain with just Tylenol and Ibuprofin. A week later, the swelling is virtually gone, most of my stitches have dissolved, and the gum is healing well. The tears at the corners of my mouth have healed, and I feel almost back to normal.

So, I’m grateful. The procedure is costing a small fortune, because our dental insurance barely approaches the total, but I’d rather have a molar than a gap in my jaw. I’m glad I can have an implant and a crown (that step will wait another three to four months for total healing) rather than dentures, which would be a nightmare with Sjogren’s dry mouth.

A few other teeth are resorbing, but I hope they will take their own sweet time. Meanwhile, much as I hate going to the dentist, I’m sure glad I went.

Photo Credit: purplemattfish 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.

Enter Autumn

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The other day, as I was walking Ginger around the block, I heard a flock of Canada Geese honking overhead. I never saw them, but I envisioned them flying in V-formation, heading south.

August is over. I’m writing on the first day of September. Even though summer doesn’t officially end until later this month, Labor Day is always my turning point from the comfort of warm, long days of sunlight into the prospect of cooler, darker, busy fall.

Black-eyed Susans 9-1-14Sugar maple leaves are the first harbinger, speckling the sides of our street for the past few weeks with splashes of gold and tangerine. As the days grow shorter, the trees begin their annual rite of passage, hardening for winter. Today seems odd—it’s muggy, hot and very sunny. But the trees know better, what’s coming.

As I write, Emily and Al are packing a friend’s truck for the drive out to her new apartment. Grad school starts this week, both for her, as a first year master’s student, and for Mindi, entering her second and final year of her professional degree program. Closer to home, public schools began last week. Time, once again, to remember to avoid leaving the house mid-afternoon when school buses from nearby schools travel their routes.

I’ve spent much of my Labor Day weekend sewing. I’m nearly done with a new dress. But, of course, it’s a summery dress, not a fall outfit. For some reason, I am never able to sew ahead of the season. I bought the pattern in July. I’ve had the fabric, a beautiful fuchsia knit, for at least five years, purchased another summer with a different dress in mind.

Two weekends ago, I finally altered the pattern and cut out the pieces. I started sewing in the evenings, until our house was full with family, and I had to clear off the dining room table. So I dug in again yesterday, because I finally had time, and because I didn’t want the dress to wait another full year. I may still get some use out of it before the weather consistently cools off.

I am a slow sewer. I have to pace myself because of my hands, and I can’t manage the fabric as well as I once could, which is why I don’t sew often. Picking out seams when I mess up, which is more often than I’d like, is tricky and tedious. I’m more willing to live with mistakes that no one else will notice, given my limitations. The end result is still good enough, albeit not the perfection I’d prefer.

I would like to sew more. My favorite sewing magazine is full of luscious fall fabrics in autumnal hues. The dress pattern I’m using comes from a designer who creates lovely, easy-to-construct clothes. I hate shopping for ready-to-wear, and sewing is the perfect antidote—not only a way to create unique clothes that actually fit, but also a great meditation. Nonetheless, I have to respect my hands. And my energy. And the number of hours in the day.

Ahead lies a solid lineup of work and creative projects to take me well into the fall. Much as I love the summer months, it’s easier to concentrate as the weather cools and everyone else is back to work or school. The trees may shed their leaves and the geese fly south, the weather will inevitably make me long for warmer days and fewer layers, but I’m looking forward to the crisp crackle of new beginnings.

I just need to sew up that wonderful warm fabric I wove last winter into a jacket, before the days grow long again.

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.

To Treat or Not to Treat

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Ah, the gift of late August heat in New England. After a week that felt more like September, I’m glad to be back in sandals, at least for the next few days.

I’m also grateful for warmer weather that helps my ulcers to heal. A week ago Sunday, I awoke with pain in my left thumb that I hoped was just an inflammation. The pad of this finger has an intransigent spot of abnormal skin that occasionally gets thick and painful and usually responds well to careful debridement. But not this time.

My thumb was achey as I commenced a six-hour round-trip drive to bring Emily home from her summer job at her college alma mater, and the discomfort was just barely manageable with over-the-counter painkillers that wouldn’t make me drowsy. I suspected an infection. But when I finally got home and took a closer look, I didn’t see any obvious symptoms. No foul odor. No oozing puss. No extreme redness. Maybe topical antibiotics, just to be safe, would do the trick overnight?

I hate starting oral antibiotics, even as I’m grateful always to have some available at home, thanks to a team of physicians who know me well enough to trust my judgment and my follow-up reporting. This is a privilege of living in a wealthy Western country with good health care (despite all the political wrangling). I am very much aware of the risks of unnecessarily treating with antibiotics—the evolution of antibiotic-resistant strains of bacteria—and that threat frightens me, since I’m so susceptible to infections.

So, I waited overnight to see if a more modest approach would work. It did not. Too early on Monday morning, I was roused by severe pain in my thumb. It had swollen just enough to feel trapped in too-snug skin. Basically, it felt like my thumb was stuck in a car door. That, or the stabbing sensation of an intermittent electric shock or an ice pick are the sure signs of a bacterial infection in one of my fingers.

Time to double-up on antibiotics—one pill for the morning, and one for the dose I should have taken the night before. Then I cut a Vicodin in half and swallowed that, too. I also hate, absolutely hate narcotic pain meds, because they make me feel like a space cadet, but sometimes there is just no other way to deal.

It took me a good 48 hours on the antibiotics to dispense with the Vicodin, and another day for the now obvious infection to begin to clear. Today, a week later, my thumb is healing well, along with my other three digital ulcers of the moment, which always clear up when I’m on oral antibiotics.

Thank goodness. But will it always be so?

In his 8-25-14 financial column in The New Yorker, James Surowiecki writes a clear and compelling analysis of why Big Pharma doesn’t invest in new drugs that don’t make a profit.

This is relevant in light of the Ebola crisis in West Africa—“Diseases that mostly affect poor people in poor countries aren’t a research priority, because it’s unlikely that those markets will ever produce a decent return” on R&D, writes Surowiecki—as well as the reason why there is so little research into new antibiotics to treat resistant strains of bacteria.

The reason for the lack of investment in discovering better antibiotics, Surowiecki explains, isn’t for lack of awareness of future need. It’s “the business model. If a drug company did invent a powerful new antibiotic, we wouldn’t want it to be widely prescribed, because the goal would be to delay resistance.” With the prospect of limited sales, Big Pharma doesn’t want to make the investment.

What’s the solution? Surowiecki floats the idea of prizes for new drugs that have a public health benefit. The idea isn’t new: government-funded incentives for innovative solutions have been used for centuries and have become common in recent decades. They are only awarded if the idea works. They help to correct market forces that work to the detriment of the public good.

So why haven’t we started down this path, already? Huge up-front costs. Surowiecki notes that “a recent report commissioned by the F.D.A. estimated that it would cost a billion dollars to get a great new antibiotic, factoring in tax credits.”

To put this in perspective, that’s equivalent to the cost of about 200 Predator Drones.

I hope and pray, before the inevitable crisis hits, that our government can stop the political infighting long enough to get its priorities straight and make a serious investment in the future of public health, both here and abroad.

God-willing, this will happen long before that bottle of antibiotics in my medicine drawer no longer provides relatively quick treatment and relief from an infection that could all too easily get out of hand.

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.