Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

feet

If the Shoe Fits

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Nearly every day of the past year, rain or shine, snow or heat wave, I have been wearing the same pair of shoes—my trusty black Merrell clogs. They are lightweight, the fabric breathes, they work well with my custom orthotics and they go with many of my casual clothes. As the fat pads in my feet have thinned from scleroderma, my shoe options have become significantly limited, and I’ve adjusted my style accordingly.

pink sandalsBut I still wish I could wear a nice pair of shoes—albeit flats, since heels are now out of the question—with better dresses and skirts. Plus, it’s hard to go dancing in clogs.

Last week, on a whim, I went searching online just to see what else is out there, and was rewarded by a new find: Vionic. These shoes are designed by a podiatrist. They have proper arch support and very comfortable, removable insoles—you can substitute your own, if you wish.

Best of all—they’re stylish. Finally, shoes with good support that don’t look like tugboats on my feet.

I bought three pairs—tan loafers, black sneakers and pink thong sandals. The first two arrived just in time for me to bring them along to my podiatrist appointment and ask him to retrofit a couple of sets of orthotics. He was duly impressed by the insole that comes with the shoes—designed to correct pronation, so you don’t mess up your knees and ankles.

Even with the adjustments he made to my orthotics, I realized after experimenting that the loafers are more comfortable with the insole that comes with the shoe. Amazing.

I still love my clogs. They’re the most comfortable shoes I own, and the most reliable for driving long distances (my feet swell when I sit for any length of time).

But the loafers hold up well for walking on the street and standing for extended periods. The sneakers are so lightweight and flexible that they feel like slippers. And the sandals provide excellent arch support. Plus, they’re fun. You can’t help but smile wearing pink sandals with little sequins on the strap.

Vionic also makes ballet flats. I’ll have to wait for these until I pay off my credit card. But just the idea that there might be dress shoes I could actually wear is enough to hold me for now.

I realize there are many more pressing issues in the world than whether I can have a few different pairs of attractive shoes. But when you’re living with a disease that continually constrains your options and ability to look your best, this is news worth celebrating.

I refuse to give in to looking older than I am or frailer or more disabled than I need to be. When it comes to scleroderma, dressing well is one of the most important ways I know to fight back. It’s not about being narcissistic. It’s about giving yourself the good care and mental boost that you need to keep going.

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.

Red Sandals

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Right before Passover this past April, I went through my closet and gave away about a dozen pairs of shoes and sandals that I could no longer wear. I’d accumulated them over decades, and each set was a favorite.

But it was simply time to face the fact that the fat pads on my feet have thinned so much from scleroderma that I need a lot of cushioning, and my old favorites hurt. Most of them I hadn’t even considered wearing for years. I had just kept them because I liked them so much.

Hard to part with the shoes, and the idea they represented—that it’s still possible for me to walk with style. Recently, the only shoes I’ve been able to tolerate are two pairs of lightweight, fabric mesh Merrell clogs, navy and black, in which I can insert custom, full-sole orthotics. I’m grateful that these are so comfortable, but they really don’t go well with skirts and dresses.

Of all the shoes I gave away, the ones I parted with most reluctantly were a pair of red sandals with two-inch heels. Nothing like red sandals. They always used to give me a boost, height-wise and mood-wise.

So now, mid-June, it’s finally feeling summery for more than a day here in Central Massachusetts, and no red sandals, no walking sandals, no sandals I could count on for casual wear or work appointments.

I had scoured online shoe sites without seeing anything that seemed worth trying. So hard to tell, and with sandals, the foot sole is key because you obviously can’t insert orthotics.

The only real solution: Go to a shoe store where the staff still know how to fit your feet. This is not easy to find. But there is such a store about a 40 minute drive from home. I haven’t been there in years.

So, with an hour to spare between two appointments last week that took me in the right direction, I made a pilgrimage. The selection hadn’t changed much since my last visit. The show window and displays were full of all the predictable comfort brands, some attractive, some downright clunky.

One would think, with all of us baby-boomer women now at the age of sore feet, that someone out there would approach the question of how to design comfortable, stylish shoes with a bit more imagination. But apparently not.

Round and round the store I walked, picking up possible choices and pressing the foot beds with my thumb. Per usual, the nice-looking sandals didn’t have enough arch support or cushioning. The most comfortable walking sandals were $225 and really, really ugly—like a pair of shovels.

I was about ready to give up and leave when I circled around one more time. There, on the wall, was a pair of raspberry red Dansko sandals—two wide straps of faux snakeskin with silvery buckles on a cushioned, rubbery platform that was styled to look like carved wood, but much more shock-absorbent. Now, I had given away a similar, well-worn black pair, not as attractive, right before Passover, because the cushioning was just not thick enough and they were too loose and caused blisters (probably because my feet are much thinner than when I had purchased them at least five years ago, so they didn’t fit properly anymore, and the footbed was worn out).

But, on a whim, I tried on the sample. It fit. Perfectly. The salesclerk found the mate in the store window, and I took a walk up and down the aisle. No pain. The shoes rolled easily from heel to toe. Excellent arch support. Good cushioning. They even made me stand up straighter, something about the balance of the shoe.

And they were red. On sale.

So I bought them. The salesclerk assured me that I could bring them back within two weeks and get a refund if, after wearing them around the house (not outside), I had any problems.

Over the next few days, I tried them on at different times. Still comfortable. I could do stairs. I could walk on our wooden kitchen floor and on the concrete in the basement.

On Sunday, sunny, full of summer promise, I decided to commit. Out the door, with Ginger on her leash, around the block. Success! Then in the car, over to the art museum, on my feet walking around for an hour to view my favorite works. A little foot fatigue, but still good. No real soreness.

There are probably no ready-made sandals in the world that will ever solve all my issues, but this pair sure gets at thumbs-up for darn near perfect.

Oh, and did I mention? They’re red.

Image: June, 1975—Hydrangea by a Pond, Stencil-dyed paper calendar by Keizuke Serizawa (1895-1984), Worcester Art Museum

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.