Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Re-Boost

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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

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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

Orchidstration

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Monday morning, while readying for the day, I was listening to a podcast interview by Krista Tippett with the celebrated children’s author Kate DiCamillo. In a wonderful, deep conversation, they explore the “mysterious fact that hope and heartbreak live so close, side by side, in real life,” and the power of story to make that bearable. Maintaining a sense of wonder in the world, well past childhood, is key. You can find the interview here.

In that spirit of wonder, I share my photos from last Friday’s visit with Al to Tower Hill Botanic Garden. Their spectacular orchid show gave me a lift, and I hope it will for you, too. Enjoy.

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.

Say Cheese

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We could all use a reason to smile right now, and I have a good one. I finally have a full set of teeth.

Back at the end of last July, I once again had to have a tooth extracted due to root resorption from scleroderma. It’s been a long nine months without my lower front tooth, #24, waiting first for the bone graft to heal, then for the implant to heal, then for the crown to be made, and finally, on Monday, to complete the whole process and get my new tooth.

Except I actually lost another tooth along the way. When I saw my dentist last month to take the impressions for the crown for #24, I told him that my periodontist had said #23, right next to it, was already 50 percent resorbed and quite fragile. Would I be able to have a second implant next to the first? I asked.

He paused, then shook his head. Not enough room, not enough bone in my jaw to make it work.

My heart sank. Now what?

Fortunately, he had a good solution. Have #23 extracted soon, then he would order a “cantilevered” crown—essentially, a false tooth for #23 attached to the crown for #24. I’d need a temporary version for the three months it would take for my gums to fully heal from the extraction and bone graft, then a permanent crown by summer.

Not that I wanted the discomfort and expense of another extraction and bone graft so soon, but better now than later. So I went ahead and had #23 removed by my periodontist a couple of weeks ago. It went as well as could be hoped, my gums healed in a week, and I got my temporary crown on Monday afternoon.

I have to say, it’s very, very nice to be able to smile without a big gap in my lower front teeth. My tongue misses having that gap to play with (back to second-grade-missing-teeth time), and the crown takes some getting used to. But given that mask mandates are gradually easing here in Massachusetts, it is great to have a full set of teeth, once again. And I am very grateful that we have the means to afford it.

Not so for many. It really is high time for dental insurance policies to cover more than just cleanings and fillings. Healthy teeth and gums are not cosmetic luxuries. They’re essential for eating well and communicating, and play a huge role in how we’re perceived by others and feel about ourselves. Scleroderma can cause significant dental damage. Some recent research is delving into this issue, which points to a correlation between digital ulcers and so-called Multiple External Root Resorption (MERR), but it needs more attention and a search for mitigating options for those of us who must deal with this rare but particularly disfiguring and debilitating aspect of the disease.

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: hybrid

Stress Test

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When I was in elementary school in the ’60s, we used to have air raid drills. We would file out into the hallway, kneel down, put one arm under our foreheads and the other covering the backs of our necks. And wait for the all clear. Pretty ludicrous, as were the supposedly reassuring cartoon films we were shown about how to stay safe in a nuclear attack.

One day, when I was in fifth grade, our entire school marched down to the local air raid shelter for a tour. We held hands with the first graders, and the six graders escorted the kindergarteners. We all thought it was pretty neat—staying there would be like a camping trip! Our teacher, however, was so concerned for our well-being that he just let us just play and have fun the next day. We got pretty rowdy by afternoon, and he ended up yelling at us.

We all express stress differently.

That we could be seriously discussing the risks of a nuclear war, today, is beyond belief. In Ukraine, enemies battle over control of a nuclear reactor and bombs drop out of the sky onto schools. As I watch the news, I am at a loss for what to do, other than make contributions to legitimate NGOs that are assisting innocent victims of this unwarranted tragedy.

I feel extraordinarily fortunate to live in a place where my most difficult decision in all this is how much news to consume. I am trying to find the balance between staying informed and drowning in the deluge of tragic reporting. I don’t want to look away, but I also need to take care of my own health and well-being, or I’m of no use to anyone.

So, I am trying to be grateful—for family and friends, a warm bed, a home to call our own, a peaceful neighborhood, money in the bank, freedom of speech, the right to vote, so much more. If there is any lesson to be learned from these terrible times, it is never to take anything for granted.

I’m also trying to follow this wise advice from Oliver Burkeman’s “The Imperfectionist” monthly email. You can find his entire essay here:

“It’s been common in recent days to see people complaining that it’s hard to get any work done, or to get on with ordinary life in general. But this may be the moment for a judicious measure of tough love. Perhaps you just need to get on with things anyway! If you wait, instead, for all the existential threats to pass, all the desperate human suffering to subside, you’ll be waiting forever.

“So don’t wait. Not just because marinating in the news helps no-one, but because what you’ll be doing instead—meaningful work, keeping your community functioning, being a good-enough parent or a decent friend—that stuff actively does help. There’s something you’re here to do. And I highly doubt that it’s doomscrolling.”

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: Screenshot from “Duck and Cover” film, 1952, via Wikimedia Commons.