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Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

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body-mind balance

Skin Deep

Evelyn Herwitz · May 8, 2012 · 4 Comments

There are some bizarre advantages to having scleroderma. For one, I don’t have as much body hair as I used to, so it take much less effort to shave my legs, and I hardly ever need to shave under my arms, which makes summertime grooming a snap.

For another, although my facial skin has loosened with excellent medical care and time, thank God (within the first five years of my disease, my face became so tight that I was having some difficulty blinking my eyes), I still have relatively few wrinkle lines. Whereas some women pay hundreds of dollars for collagen creams that plump up their skin, I have more than enough collagen to go around.

Which isn’t to say that I don’t fret about my appearance as much as most other women my age. In a culture that values youth and physical perfection, where magazine ads feature models with Photoshopped features that defy wrinkles and flaws, I am quite conscious of the ways that scleroderma distorts my face.

There is the fact that my nose—generous, to begin with, like my father’s and his father’s—has narrowed and looks and feels pinched. There are the red, blotchy telangiectasias (dilated capillaries) that speckle my nose and dot my right cheek. There are my droopy eyelids, which have fallen over the years due to thickening. There is the asymmetry in my facial muscles, so that the right side is slightly weaker than the left, causing me to smile a bit lopsided. And there are the deep furrows around my lips, resembling a cinched purse.

Most of this I can address with some artfully applied makeup. A couple of years ago, I discovered Arbonne products, which are vegan, extremely lightweight and moisturizing, and use a wonderful color palette that complements my skin tone.

But my deep mouth creases are another story. When they first developed, around the time I was approaching menopause, I was, quite frankly, horrified. This sounds shallow, I know. There are many other, much more horrible things that can happen to you than to develop ugly mouth wrinkles. And yet, self-conscious me hated them and wanted to do something about it.

So I consulted with my rheumatologists and a couple of specialists. A plastic surgeon advised me not to frown or look down, because it exaggerates my creases, and suggested Botox. The idea of injecting a substance that would relax my face into a mask seemed ridiculous, so I passed on that (and him). A cosmetic dermatologist suggested a more promising alternative, injecting hyaluronic acid (HA), a natural filler used to smooth out “puppet mouth” (those long creases that run from either side of the nose to the chin), crow’s feet and other facial flaws.

Al was supportive, though he assured me I looked fine the way I was. He understood how I struggle with the way scleroderma has distorted my body and was willing to go along with my experiment. After doing a test of HA on the inside of my arm to be sure I wouldn’t have an allergic reaction, I went ahead and had the procedure.

This was not fun. First, the cosmetic dermatologist marked the worst creases with a felt-tip pen. Then, after numbing the skin, he stuck a very sharp needle beneath each line around my mouth to fill the furrows with HA. It hurt like hell. He gave me a stress ball to squeeze, which didn’t help much. Neither did the anaesthetic. I quipped how we’ll do anything for beauty, and he just nodded. Of course. I wondered what he really thought of me and all the other women who came to him, in vain, to try to reverse the aging process.

As expected, the skin around my mouth reddened and swelled for several days (I did this at the end of the work week, so most of the evidence would be gone by Monday morning). As the swelling receded, I checked my reflection frequently. Were the furrows gone? Did I look like my younger, healthier self again?

Alas, as weeks passed, I realized that all I’d gained were small lumps where the deep wrinkles had been. The effect wasn’t smooth and youthful. In fact, the HA caused the skin around my mouth to feel a bit tighter, because of the extra filling. When the substance fully absorbed, after about five months, I was relieved. No one ever noticed the difference (or if they did, they never commented), I could open my mouth more readily again, and we were going to save a ton of money.

And, at the risk of sounding Pollyannaish, I discovered a much wiser, free solution: My mouth furrows disappear when I smile.

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.

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Filed Under: Body, Mind, Sight Tagged With: beauty, body image, body-mind balance, resilience, telangiectasias

On Turtles and Frogs

Evelyn Herwitz · April 3, 2012 · 4 Comments

When it comes to check-out lines, I’m slow. Really slow. Or so it feels when I’m standing at the register, fumbling to remove cash and slide coins back in my wallet without spilling them, fiddling with the receipt, finagling my wallet back into my purse.

If I’m shopping with one of my daughters, I’ll just let her handle the money so we get through the line quicker. If I’m shopping with Al, he takes care of the transaction. But since I usually do errands by myself, I’m often in this state of fumbling and feeling like I’m holding up the people behind me.

Lately, I’ve taken to hauling my purchase, change and receipt to an open counter where I can take my time to put everything back together. The other day I was in a store, arranging my stuff at an empty checkout counter, when the cashier at the next station asked if I needed help with an exchange.

“No,” I said, “I’m just getting organized.” To which she replied, “I wish someone would do that for me!” We laughed, and I felt better.

Some of this angst about being a slow-poke because my hands are clumsy is in my head. But I’m not imagining people’s impatience in the line behind me, either. We’re a society obsessed with speed.

When I was a marketing director for a dozen-plus years at a small New England college, I would always give my new employees a plastic turtle. Then I’d explain Herwitz’s Turtle Principle:

  1. Take the time to do the job right the first time, or you’ll end up spending twice as long fixing it.
  2. If our internal clients drive you crazy, draw into your shell and let it roll off.
  3. Pace yourself through the day, including lunch and breaks to clear your head. You’ll be more productive and keep your sanity.

Everyone loved these guidelines and our little department mascots, and many of my staff took their plastic turtles with them when they moved on to their next career step. While I’m sure it sounded odd and downright seditious to some of my colleagues who wanted us to jump to meet their demands, whenever we followed the Turtle Principle, we were highly productive, and whenever we succumbed to pressure and rushed to complete a project, we’d screw up.

Problem was, I had a really hard time finding those plastic turtles. I’d search in toy stores and party stores to no avail. It took creative thinking and serendipity to locate them. Plenty of plastic frogs, but few turtles.

Not surprising that the frogs outnumbered the turtles, when you think about it. We’re always hopping, running, chasing to keep up with
everything we try to stuff into a day. So often I hear people complain how busy they are, how exhausted they are—but the complaint often veils pride in accomplishment. How busy you are is also a measure of success. If you’re busy, you must be doing a lot of important things, right?

I get caught up in this cycle, too. Which is why I hate to waste time fumbling at the check-out counter, and why I’m so conscious of holding up people in line behind me.

But, really. What if we all took a few more minutes at the check-out line to stop, organize ourselves and chat with the cashier? Turtles are among the longest-lived creatures on the planet. In this 5-Hour-Energy, instant-download, five-minutes-ago-is-old-news world of ours, scleroderma or no scleroderma, I’d rather be a turtle than a frog.

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.

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Filed Under: Mind, Touch Tagged With: body-mind balance, life style, turtle principle

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About the Writer

When not writing about living fully with chronic health challenges, Evelyn Herwitz helps her marketing clients tell great stories about their good works. She would love to win a MacArthur grant and write fiction all day. Read More…

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I am not a doctor . . .

. . . and don’t play one on TV. While I strive for accuracy based on my 40-plus years of living with scleroderma, none of what I write should be taken as medical advice for your specific condition.

Scleroderma manifests uniquely in each individual. Please seek expert medical care. You’ll find websites with links to medical professionals in Resources.

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