Skin Deep

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.

Comments

  1. Kathy Pulda says:

    your skin is beautiful as are you. K

  2. My lips look like a clenched purse, too! I was diagnosed at 25 years old and here I am, 10 years later and my nose have gotten narrow as well. I hadn’t seen my friend in a while and she went, “WOW, your nose is much thinner!” It didn’t occur to me until I looked back at the old pics from several years before. My skin is okay – I just hate the “sunken” appearance of my eyelids/eyes. Wearing make up really helps. For a really long time since I was diagnosed, I was pretty lucky that my hands were doing fine except for the bluing of the fingers. But this year is pretty tough. My fingers are really thick and tough. And they are starting to curl up. No bueno. I’ve been eating clean since March of this year since I found out that my Scleroderma was getting worse. So it’s really HARD to give up so much: regular bacon, ice cream, desserts, chocolate, soda pop, white flour, white sugar, brown sugar, bell peppers, strawberries and potatoes! Grew up with those so it’s hard to deal with the fact that other people can enjoy it just as merrily. But of course, I tell myself, anything to keep my CREST symptoms at bay.

    • Kerri, I fully understand what you’re going through. Scleroderma is tough, especially when you’re in your 20s and 30s and your face changes so radically. Do you find that your new dietary restrictions are helping? I still enjoy chocolate and strawberries and potatoes! I do think it’s important to eat healthy, just to give your body its best shot at healing. But I don’t know of any definitive research about the impact of particular foods on the disease’s progression.

      When my hands first started thickening (they have since loosened up somewhat, so don’t give up hope–it is possible for the sclerosis to ease with time), I found warm paraffin was soothing, though you have to be very careful about temperature. I also rely on herb bags that can be heated in the microwave to give my hands some relief. Maybe this will help you, too. Take care!

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