Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

feet

Re-Boost

· · 2 Comments

Thursday afternoon, as I awaited my podiatry appointment*, a young woman at the other end of the waiting room began to sneeze and sniffle. She wore a mask—below her nose. When the nurse came to check her temp before her appointment, she asked the young woman how she was feeling. “Fine, thanks,” the young woman replied. Yeah, right, I thought.

Maybe it was just allergies. Or maybe she was in denial. In any case, at least she was not seeing my doc, and she was in an exam room away from the one I was given a few minutes later. I kept my own mask on tight and reassured myself that I was getting my second Covid booster in a few hours.

Omicron BA.2 is way too contagious, and I’ve read far too many accounts of people getting a “mild” case that feels like being run over by a truck, so I jumped on the opportunity when another booster round was approved by the FDA for people 50 and over last week. I was hoping the side effects wouldn’t be too bad.

That proved true Thursday evening. By Friday morning, I just had a sore arm and “Moderna rash” where I got the shot. By midday, I started feeling achy and tired, but I was still able to get some work done. Then I needed to lie down. After a good nap and Tylenol, I began to feel better. By Saturday, I was pretty much back to normal, although the rash will still take a few days to clear. This has been my pattern with each vaccination.

A small price to pay for a better immune response to this clever, cruel virus. I’d much rather have a day or two of side effects than potential lung damage from Covid on top of my already scarred lungs from scleroderma. Given that I can’t control the safety precautions of those around me, I’m grateful that I have this way of taking care of myself and my family.

* As to my troublesome corn, my podiatrist said there was no way, most likely, to keep it from coming back, but after removing it, he ground down a spot on the underside of my foam insole to relieve pressure. So far, so good. I ordered my own version of this tool, which is actually the same as a toenail grinder for pets, so I can adjust my other insoles at home. Just need to put a little chalk on the corn, step barefoot on the insole to mark the spot, and grind a depression on the opposite side.

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: Nick Fewings

Step-wise

· · 5 Comments

I see my podiatrist this week. It’s a good thing. Every couple of months, he rescues my feet from corns and tiny bits of calcium emerging from the tip of my right big toe. He also trims my toenails, which I can do for myself with a little difficulty, but still need help.

Scleroderma has caused the fat pads on my feet to recede significantly over the years, which makes it difficult to walk on hard surfaces. I really can’t go barefoot on our hardwood floors without discomfort. It feels like walking on bones. That lack of natural padding also makes corns more of an issue, especially when they form over joints.

Since last summer, I’ve been trying to manage a particularly annoying corn that keeps reforming over the metatarsal head of my fifth toe on the bottom of my left foot. Even with orthopedic foam inserts in my shoes—a necessity to cushion the impact of walking—I find myself rolling my left foot toward my instep, to avoid the feeling of stepping on a pebble. This places extra pressure on the metatarsal head under my big toe, which is also uncomfortable, and I end up walking with a slight limp and a rolling gate that aggravates other joints and my back.

It’s amazing how something so tiny can make it so much harder to get around. I find myself avoiding my neighborhood walks, lately, because of all this. And that means I get less aerobic exercise, and my weight starts creeping up again. If I don’t walk, I don’t sleep as well. And so on.

I’ve tried corn plasters and salicylic acid drops, which help a bit, but I can never fully extract the corn myself. Which is why I’m glad to be seeing my podiatrist this week. I’m hoping he can help me to figure out a way to keep the corn from reforming, although he’s told me recurring corns are a really common issue for his scleroderma patients.

My other possible solution is to cut away some of the foam in my left insert, essentially to make a little doughnut hole right where my corn touches it—kind of like a built-in corn cushion.

Living with scleroderma is, in some ways, a never-ending series of problems to be solved. Even after 40 years of managing this disease, it continues to surprise me. And so, my goal is to keep one step ahead, before the little stuff turns into something even more complicated and difficult to manage.

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: Christopher Burns

One Small Step

· · 2 Comments

I’ve written a number of posts over the years about decluttering—my office, my home, my head. But this past Sunday, I actually did something about it. I Marie Kondoed my closet.

For those who may not have heard of the cultural phenom, Marie Kondo, she is the bestselling author of The Life-changing Magic of Tidying Up and star of a Netflix series, in which she helps people with far too much stuff to pare down to what they really love and need. There are plenty of memes and jokes and cynicism about her key question for each item, “Does it spark joy?” But after my younger daughter encouraged me to watch her show, it only took a few episodes to convince me that Marie Kondo is onto something simple and seemingly obvious, but profound when you put it into practice. When you clear out the clutter, you make room in your mind and life for what truly matters. That, and those of us living in the richest country in the world have far more stuff than we will ever really need in our lifetimes.

It took me about three hours to go through all my clothes. Kondo’s method is to pile everything on your bed and assess it piece by piece. Keep what gives your pleasure and give away the rest, with appreciation for the role it played in your life. Some of the decisions were easy. There were clothes I haven’t touched in years taking up space; clothes that no longer fit; and clothes that I really didn’t like but had kept because they might come in handy some day.

There were also clothes that I really love, and kept. And there were some items, particularly some of my warmer winter clothes, that I’m a bit tired of but can’t afford to replace quite yet, so I hung onto them out of pragmatism. The best finds were two timeless evening dresses that I had worn for each of my daughter’s bat mitzvah celebrations—that still fit. This was quite the miracle, especially because I love those dresses, not only for their style, but also for the memories.

Then there were the shoes. I ended up bagging about a dozen pairs, acquired over the years. Shoe shopping is always a struggle, not only to find the right fit in the store, but also to find shoes that won’t trigger the neuropathy in my feet, due to thinned fat pads from scleroderma. This is an attribute that I can only determine after wearing the shoes for a while, and since most stores only let you try them out around the house, I can’t always assess them until I wear them outside. If they don’t work out, it’s too late. Someone will benefit from my mistakes.

In the end, I brought six garbage bags of clothes to Goodwill, plus a shopping bag full of hangers. It felt good. I gave away some nice things that I hope many someones out there will enjoy. My closet is organized, and I don’t have to struggle to pull a hanger from an overcrowded rod, or dig through piles of unworn sweaters on the shelf. I can see everything, and everything is in its place. It looks pretty, inviting.

Best of all, I feel like I’ve made room in my brain. It’s an aaahhh sensation, like there’s more space to breathe. Less clutter means clearer focus.

Now, it’s time to tackle my office.

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.

If the Shoe Fits

· · 2 Comments

Dear Reader: With this post, I’ve switched to a different blog distribution platform. You can still get to the entire post from your email—please just click on the Read More link and it will bring you to my blog’s website, with the full text. EH

I’ve been on a quest for good walking shoes for at least a month, now. With the weather warming and travel plans ahead, I want to be sure that I have a reliable, comfortable pair that will minimize my feet issues, even as I am coming to accept that no pair exists that will make walking fully pain-free.

This is always a challenge. The biggest stumbling block is that you can’t walk outside in shoes that you’re trying out at home without committing to buying them. (I know of one clear exception, Allbirds, which gives you a 30 day trial of walking anywhere—if the shoes don’t work out, you send them back and they are donated to people who are homeless. Zappos has also accepted returned shoes I’ve lightly worn once outside, but I don’t want to take unfair advantage of that option.) So how to really know if the shoes will be comfortable on pavement or uneven terrain, which are always the big challenges?

My strategy now is to wear a pair I’ve bought around the house for a few days. Usually, if there’s a major fit issue, I’ll know right away. If there are other structural issues, I’ll know in a day. If the shoes are still comfortable after a couple of days, I’ll take the plunge and wear them outside.

But, first, they have to meet a number of criteria. The fat pads on my feet have thinned so much from scleroderma that I have to set a high bar:

  • Is there plenty of room in the toe box? No pinching?
  • Are they lightweight so as not to aggravate my joints?
  • Is the shoe made of materials that breathe, to avoid trapping perspiration and triggering Raynaud’s or causing skin breakdown?
  • Does my foot feel balanced, with pressure evenly distributed over the entire sole?
  • Does walking in the shoes adversely affect my knees, back or hips?
  • Is there sufficient arch support?
  • Is there a removable foot bed, so I can use my own orthotics or a good ready-made alternative?
  • Is there enough shock-absorbency, so the shoe doesn’t tire my feet or trigger the neuropathy in my right foot?
  • Can I walk without noticing the shoes? Do they fade into the background?

Then there is the question of style. I refuse to wear shoes that look like boats. Fortunately, now that so many of us baby boomers are aging, and many of us have buying power, there are a lot more alternatives for comfortable shoes that are at least somewhat attractive, even if heels are out of the question (and bad for your feet, anyway) and daintier styles lack necessary support. When I first began having these issues several decades ago, the choices were much slimmer. Now there are options, even for my particular taste.

If the shoes pass all of the above tests, then it’s time to risk a test drive around the block. None of this is foolproof. I’ve tested shoes outside, thought I had a winner, only to discover after repeated wear that they don’t work out in the long run. This has happened more times than I would like.

Which brings me to my latest acquisition, a pair of Abeo sneakers that I found at The Walking Company. I’m on first-name basis with the sales clerk, at this point. She knows my issues and really tries to help me find the right shoe. I landed on this pair after several rounds of other shoes that didn’t work out. Then I went back and upgraded the removable insoles. That combination seems to be on target.

My walk around the block on Monday in lovely sunshine was an A-. Pretty good, all things considered. While there is no pair that will make walking painless or tireless, these sneakers give me hope that I’ll be able to sustain longer walks—balanced with thoughtful pacing and rests. Staying active is simply too important to give in to all the obstacles that this disease throws in my path.

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.

48 Hours

· · Leave a Comment

It’s been nearly 30 years since I visited our nation’s capital. This past weekend, Al and I packed in a slew of sightseeing in Washington, D.C., around a family celebration in Virginia. In just over 48 hours, we visited the National Gallery, Lincoln Memorial at night, Vietnam Veterans Memorial (also at night), Supreme Court, Capitol grounds, Newseum, National Gallery Sculpture Garden, National Archives, Hirshhorn Museum and National Gallery East. On Saturday morning, in sweltering heat, we participated in the Families Belong Together protest rally in Lafayette Park, next to the White House.

I walked my feet off. It was worth it. The highlight of DC, for me, was seeing the original Declaration of Independence, U.S. Constitution and Bill of Rights at the National Archives. The parchment is huge, the writing faded, the signatures inscribed by human hands. The ideals endure. I was reminded by an exhibit about women’s suffrage at the National Archives and the chiseled words of Lincoln’s second inaugural address at the Lincoln Memorial of how much struggle and acrimony is embedded in our nation’s history. I felt the power and protection of the First Amendment in Lafayette Park.

Here are some of my favorite images from our trip:

The conclusion of Lincoln’s second inaugural address at the Lincoln Memorial
Lincoln Memorial at night
Seen in a garden on our way to Capitol Hill
Protesters outside the Supreme Court
Heading toward the U.S. Capitol Building
Section of the Berlin Wall at the Newseum
National Gallery Sculpture Garden
Families Belong Together protest in Lafayette Park
Calder sculptures at the National Gallery East
Saul Steinberg, Untitled (A Conversation), National Gallery East
Le Gourmet, Picasso, National Gallery East

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.