Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Body

Fine Tuning

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During this past week, amidst so much bad news—the spread of Ebola in West Africa, the sudden eruption of Japan’s Mount Ontake that killed dozens of innocent hikers, the escalation of air strikes against ISIS in Syria, wildfires on the West Coast and more—I have been singing.

I highly recommend this as an antidote to scary headlines and other depressing thoughts.

In particular, I sang alto in a quartet accompanying our cantor and choir for Rosh Hashanah last Thursday and Friday. We’ll sing again this coming weekend, when Shabbat coincides with Yom Kippur. So we have another rehearsal this Thursday night.

This is a good thing. It’s wonderful to have the beautiful melodies of the High Holiday liturgy circling around in my head, blocking out all the bad stuff.

Services were lovely and uplifting, but it took quite a few rehearsals for me to feel really good about singing again. It’s been at least 10 years since I participated in a High Holiday choir, and I’ve never been part of the quartet. So it was a bit of a shock when we began rehearsals about six weeks ago to realize that I had gotten quite rusty. Despite more than a decade of playing instruments and singing in choirs, when I looked at the sheet music, I could not recall the names of all the notes.

Understand that I played violin for 11 years and was concert mistress in my high school orchestra.

What was happening to my brain? It actually scared me. Early signs of dementia? Age? Fatigue? Some crazy aspect of scleroderma? I didn’t know.

With practice, thank goodness, the notes came back, and by our second rehearsal, I began to regain my ability to sight-read.

A second challenge, however, was tied to scleroderma and its nasty partner, Sjögren’s Syndrome. Although I can still vocalize well, my range is more limited than in the past (I used to be able to sing second soprano as well as alto), and sometimes the notes come out warbled or off by a half-step, because my mouth is dry and I can’t always control my swallowing or how my throat opens.

I figured out how to compensate for some of this by remembering to breathe from my diaphragm, rather than straining my throat to sing louder. But I do have limits. I need to breathe more often, breaking phrases, because my lungs just won’t hold enough air. And if the group goes flat, I cannot hit the low G. Impossible.

I was feeling a bit awkward about all this, wanting to hold my own in the quartet. But then I realized that I had better fill in people, so they would understand and I could do my best for the group. Both the tenor and bass are physicians, and all are friends, so when I took the leap and explained about my health-related issues, everyone was quite supportive. This was a relief. I no longer felt self-conscious, and I certainly enjoyed singing all the more.

We received many compliments after services, how our voices enhanced the experience for the congregation. And we loved singing together. Once we learned the music, we enjoyed the added, serendipitous benefit that our four voices have natural resonance. Truly a delight to harmonize.

So I’m looking forward to our Thursday night rehearsal and to singing once again this weekend. And I hope our quartet will find more opportunities to sing together. The world is overflowing with bad news, and I don’t want to lose those notes 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.

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

Royal Flush

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As the late Joan Rivers would say, “Can we talk?”

I’m referring to bathroom hygiene.

5360420829_c2d1617f3b_bNow, before you say, “E-w-w-w-w-w-w-w,” I raise this because it’s one of those topics that no one wants to discuss in public, but that presents some very real challenges for those of us with scleroderma.

To wit, what do you do when your hands don’t work right—because you have digital ulcers, like me, and/or you have flexion contractures that freeze your fingers at right angles, and/or your wrists aren’t flexible and your skin is too tight and your fingers are sore or just not that strong anymore—and you have to clean your bum after taking a dump?

It’s not easy, and it can be downright frustrating.

I’ve discussed this with occupational therapists over the years and gotten a few helpful suggestions.

Here’s what I’ve found to be most effective. There are three essentials:

  1. Soft, strong toilet paper. Forget the one-ply stuff that supposedly saves money but disintegrates as soon as you tear it off the roll. You just need three times as much to do the job.
  2. Flushable toddler wipes. My favorites include aloe. You can buy these at any drugstore or Target, they’re inexpensive, and they make the whole process of cleaning yourself up much quicker and easier, especially if your fingers are weak or sore. Just be sure to check that the package says safe for sewers and septic systems. You don’t want to clog up your plumbing.
  3. Antibacterial hand sanitizer. These products have gotten a bad name, lately, because of worries that we use so much antibacterial soap and cleanser that we’re encouraging resistant strains of bacteria. But I’ve checked with my infectious disease doc, because I cannot use soap and water on my ulcer bandages without risking more damage to my skin beneath the dressings, and he assures me it’s fine. Hand sanitizer that I rub on and let air dry is a major part of my hygiene routine and a reliable defense against ulcer infections. Again, I favor products with aloe that don’t dry out my skin.

And here’s my method: Make a wad of toilet paper, large enough that you have a good grasp without exposing your fingers. This essentially provides padding for fingertips. Top it with a wipe. This gives you additional protection plus a gentle moisturizer for efficient clean-up. Swipe and flush. Repeat as needed. Then clean your hands with the sanitizer.

Sometimes, if you’re dealing with a bigger job, it helps to have some disposable vinyl gloves on hand, to be sure you keep your fingers clean.

If you have trouble pulling the wipes out of their plastic packaging, try cutting the package apart and placing the stack of wipes into a ziplock bag, the kind with a plastic slider at the top edge (I find these easier to open and close). This is also a good way to carry some wipes with you, in a purse or carryall, when you are out of the house.

If anyone out there has some additional tips, please share. I’m a fanatic about hand hygiene, because I’ve had far too many infections over the years. We all have to use the john, and those of us with scleroderma—or any other medical challenge that limits manual dexterity—have to be creative when it comes to bathroom habits. It’s not just a matter of staying healthy—it’s a matter of staying independent.

Photo Credit: KimCarpenter NJ 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

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.