Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

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Readymade

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As the weather finally warms up here in Central New England, I decided on Sunday to take advantage of sales and buy a pair of summer pants. Off to the mall I went, hoping for some good luck. I really don’t enjoy shopping for clothes much anymore. I’m particular, it’s difficult to find something that fits properly, and the mirror and neon lighting can be quite cruel. In addition, all the dressing and undressing can be quite tiring on my hands. But I had some free time, the sales looked good, and I was in the right mood to give it the old college try.

The first store I tried was a disappointment. None of the pants fit properly—either too baggy or too wrinkled. As a seamstress, I know how pants are supposed to fit without “smile lines” in the seat. I also look for quality fabric and workmanship. No luck. I did, however, find a nice summer sweater on markdown, so the visit wasn’t a total loss. (Never can have enough sweaters, year-round!)

So long as I’d made the trek, I decided to check out one more store. They, too, had a good sale on pants. This time, I found a pair that fit perfectly, right off the rack. Only one problem: I couldn’t zip up the zipper all the way. This wasn’t a matter of fit; it was a matter of workmanship. The pants had a left side invisible zipper with a small pull tab, and I could not grasp it firmly enough to pull it above the waistband seam. The seam was just a bit too bulky for the zipper to easily slide past. The pull tab hurt my fingers. And there was no sense in buying pants that I couldn’t fasten properly.

Fortunately, the same style was also available in several other fabrics, and a pair of navy blue pants not only fit, but also the same type of invisible zipper worked easily. So I bought them, happy with my find at a 30 percent discount.

As I drove home, I once again thought that I really need to finally figure out how to sew a basic pants pattern that fits and just use that for the future. I had tried this several years ago, but gotten discouraged with the results. Maybe this summer is the right time to try again. Sure would solve a lot of problems.

Meanwhile, I’m glad I found what I needed within an hour. And that I can zip the zipper.

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. Please view Privacy Policy here.

Image: Artificial Photography

Women’s Imaging

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Monday morning. I am at one of my least favorite medical appointments: my annual mammogram. I am relieved to get through the test in a matter of minutes (even as it feels much longer when clamped in that sadistic machine). What strikes me most about this year’s visit is the new surroundings for the clinic, which has been relocated into a large medical complex. It’s the signage that gets me—a separate section within Radiology dubbed “Women’s Imaging.”

Why do they have to use a euphemism for Mammography? Is someone afraid that women are too embarrassed to go to a waiting area clearly marked for what we all know is screening for breast cancer? Do they think our sensibilities are too delicate to deal with acknowledging one of the major risks to women’s health?

I find it ridiculous. And demeaning. Being an intelligent health care consumer means being aware and informed about the realities of your medical conditions, treatment options and risks. It does not mean pretending or denying or ignoring that women have some specific health risks that merit our proactive attention.

I have made a conscious choice to follow my doctor’s recommendation for an annual mammogram. My mother had a benign cyst removed from her breast when I was in grade school. I suffer the discomfort because I want to know the results, even as the value of mammograms has come into question in recent studies. In particular, there are serious questions about whether women are being over-treated for small tumors in breast ducts that show up on the scans, but that would not actually threaten health if left untreated. (You can read more about that here.)

Fortunately, so far, I have never had to contend with a suspicious finding. I hope I never have to make a choice about such a result, but if I did, I would consult all the research to make a fully informed decision about risks of cancer versus risks of treatments. And I would want my physicians to be informed and direct with me about options.

So, let’s take women’s health seriously. Spare us the euphemisms and respect us as adults who can handle whatever life throws at us.

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. Please view Privacy Policy here.

Image: Arisa Chattasa

Phantom

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Seven months have passed since my hands were “revised” with skin graft surgery, nearly five months since I completed 60 dives in a hyperbaric oxygen chamber. The weather is warming, the trees are in full leaf, the scent of lilacs lingers. And for unknown reasons, I have begun to experience phantom sensations in my partially amputated right middle finger.

Not pain. Just itching. It’s as if my finger is tingling in a non-existent tip. Quite peculiar. I want to scratch it, but there’s no there, there. Instead, I rub the bulb-like stump that remains, with its confused nerve signals that tell my brain I’m touching the side of my finger when I’m actually feeling what is now the top.

Usually, if I rub the stump for a few minutes, my brain reinterprets the sensation and the itching goes away. I wonder how long this will go on.

There are no ready remedies for phantom limb pain (fortunately, my experience is more benign). Non-invasive therapies include mild nerve stimulation with a TENS device, acupuncture and the mind game of a mirror box, which involves doing symmetrical exercises using the mirror image of your intact limb as a cue, while imagining that your amputated limb is mimicking the same movements.

My phantom itching is so intermittent that I doubt if exploring these or other options is worth the time. But I find the whole experience most curious, albeit annoying. How is it that my brain still thinks I have an itchy finger tip? The location of the itch is always the same, about a half inch above my stump, where the top joint used to be. The finger was actually longer before the surgery. Why that specific location in nothingness?

There is also the strange confusion of how I’m actually touching objects. All these months after surgery, the fact that skin from the side of my finger was used to cover the remaining stump still signals to my brain that I’m brushing objects with that side, even as the skin is now effectively oriented in a 90-degree angle to its original position.

I’m trying to teach myself how to consciously reinterpret what I’m sensing. How odd, to be dealing with this most basic way of interacting with the world at a time when so many assumptions about what is real and true are under siege.

Sensations are hard-wired. Or not. Sometimes they merely shimmer.

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.

Image Credit: Sebastian Spindler

A Matter of Distinction

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A friend asked me the other day, “What’s new?”

“It’s my birthday on Wednesday,” I replied.

“Oh, are you going to be 65?!” he asked, intending it as a jest.

“No, 64. But 65 would be great, because then I’d finally be eligible for Medicare,” was my rejoinder.

I certainly am looking forward to being relieved of the stresses and uncertainties of employer-based health insurance. But in the meantime, I’m also looking forward to my birthday tomorrow.

Al and I decided to celebrate this past weekend, staying overnight close to Boston for a special dinner out on Saturday night, a great performance by Berlin-based Max Raabe & Palast Orchester at Berklee College of Music, a wonderful brunch Sunday morning with Mindi, and on to an afternoon at the Museum of Fine Arts. I came home feeling celebrated and refreshed.

This, despite some really nasty, cold weather that precluded any chance to wear festive springlike clothes for the occasion. Instead, I decided to decorate my hands.

I haven’t worn any of the beautiful heirloom rings that belonged to my mother and grandmothers in many years. Why draw attention to my fingers? They’re so distorted, especially now, after all the surgery last fall. Or so I’ve told myself.

But Saturday afternoon, as I packed my bag, I reconsidered. Why not? The jewelry reminds me of women that I loved. Both my grandmothers were very elegant, with incredible fashion sense and strong, individual taste. My father’s mother always wore a beautiful opal ring, set like a flower with small opals as petals.

As I child, I wondered why she didn’t have a diamond ring like every other married woman I knew. But now I can really appreciate how distinctive a statement she was making.

So that’s the ring I chose to wear for my birthday weekend. I could only fit it on my left pinky, next to my wedding ring. The gold of one does not match the other. I didn’t care. It simply made me feel good to touch its detailed surface and remember her. It also felt good to assert to my own sense of style.

My fingers are certainly distinctive. And I have ring to match.

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.

New Year, New Hands

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Last Thursday, I finished my 40th dive in the hyperbaric oxygen chamber. My grafts have healed. The Wound Center staff gave me a “certificate of completion” decorated with pictures—a fountain pen and typewritten words, a graphic for all the podcasts I listened to while bandaging up my fingers after my dives, an image of a Fig Newton, my favorite post-dive snack. Everyone signed with good wishes. I promised to come back and visit.

It seems amazing to be through. I still have bandages on my thumbs—the right as it continues to heal and the left, to protect a chronic pit that waxes and wanes. I’m moisturizing the grafts during the day, leaving them exposed to the air so the skin toughens up but remains pliable. I’m learning to interpret the sensations from the flap on my right middle finger. And I’m touch-typing away, thank goodness.

Christmas weekend, I took my daughters to see my sister and her family in the Midwest, my first trip since Al and I traveled to Norway in August. A good visit, anticipated for months, certainly not as strenuous a journey as this summer, but a bit of a psychological hurdle, given how my hands fell apart when we were abroad. I took extra care to protect my fingers, which paid off. No new ulcers, no damage. Just a rotten head cold on the way home, which mostly cleared by the end of the week.

So, here I am, starting 2018 with “revised” hands, all ten fingers. There is adjusting to do. I need to relearn what I can and cannot tackle, given that left index and right pinky are fused at the joint, right middle is stubby like a cigar, and left middle no longer bends at the partially amputated, grafted tip. The grafts have no nerve sensitivity, which requires mindful awareness of what I place where. Most of my fingers no longer move the way they used to. I’ve made an appointment for Thursday to see an occupational therapist in my hand surgeon’s office, to get some exercises to strengthen my grip, increase flexibility and discuss what I need to adapt.

Still, I’m feeling upbeat. I can do for myself again. Even temperatures here in the deep freeze for another week are only a temporary annoyance. Tucking hot packs into my wrist warmers staves off numbness. Staying cozy beneath the covers for an extra hour in the morning, now that I don’t need to push to get to the hospital, helps, too.

I could never have imagined, on New Year’s last, that I would be celebrating having all my fingers today. It’s just as well that we can’t see into the future. Too terrifying. If 2017 has taught me anything, it’s been how to stay very focused on the present, to measure progress in small steps, to be grateful for little victories that add up with persistence, to not let my fears keep me from taking reasonable risks for my health.

So, here’s to 2018. Bring it on. Just let me keep my fingers, please.

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.