Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Mind

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.

Awaiting Sunrise

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On a cold winter’s day, I’m thinking of sunflowers. Beautiful, hardy, bright sunflowers have been linked to scleroderma awareness, first in Australia, and now worldwide, symbolizing the sun’s warmth that brings so many of us comfort. At each sunflower’s center are thousands of tiny disc flowers that mature into seeds— symbolizing seeds of knowledge and the quest for a cure.

Sunflowers are also the national flower of Ukraine. Every summer, golden fields of sunflowers blossom across the country, which is the world’s largest producer and exporter of sunflower seeds and sunflower oil. The distinctive bloom is woven into wreathes for celebrations, painted on walls and furniture and folk art.

Before they fully mature and open, sunflower heads follow the path of the sun across the sky and come to rest overnight facing east, awaiting the next sunrise. Various religions have associated the sunflower with spiritual knowledge and a quest for truth and enlightenment. It is an inherently optimistic flower.

So I hold onto that as I have struggled to concentrate this past week, watching the brutal Russian invasion of a sovereign nation unfold. Great bravery and courage inspire. I pray that innocents will be spared, and that Ukraine, with the support of the world, will ultimately prevail.

And to plant more seeds for scleroderma awareness and research, I offer this: The biennial Systemic Sclerosis World Congress, a virtual gathering due to the pandemic, opens next week, on March 10, bringing together experts from around the world to share their work. There is a free Patient Congress, as well, from March 11-12, with presentations by international specialists on many aspects of living with this complex disease. Registration closes on March 7. You can find more here.

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: David Travis

February Thaw

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I was finally able to take a walk Monday afternoon around my neighborhood. The sun was bright, the sky a robin’s-egg blue, temps in the mid ’50s, and my thumb had healed enough so that I could swing both arms without the pain of gravity’s pull on a swollen finger.

All good.

The snow from a recent storm and subsequent snow showers had mostly melted, sending water trickling through storm drains. A mourning dove cooed plaintively from a nearby rooftop. As I walked, the too-tight muscles in my back began to relax. Annoying chatter in my mind quieted, and I focused on what I saw, heard, smelled . . .

Hints of green amidst bleached grass.

A watchful dog’s bark.

A power drill’s whine.

A passerby’s hello.

Tiny buds on tree branch tips.

Hockey sticks slap slap slapping.

Overhead a private plane’s purr.

Wood smoke’s tang.

Sparrows’ chatter.

Sneakers’ scrunch.

Spring can’t come too soon.

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.

In the Weeds

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Last week did not go as planned.

I’d been successfully managing two infected finger ulcers with my usual skin care regimen, plus an antibiotic that normally clears up any such issues within a few days. On Tuesday, I was on Day 10 of that medication and thinking I could probably discontinue it by Day 14. (My docs trust my judgment, given four decades of managing this disease.) But by that afternoon, the ulcer on the inside crease of my right thumb began to smart.

At first, I thought that my dressings had simply dried out and needed to be redone. But after my evening shower, I discovered that my thumb was not happy—not by a long shot. It was swollen and so painful that I ended up taking hydrocodone to try to control the cycling nerve shocks (you really have no clue how many nerves are in fingers until something like this happens). The pain woke me in the middle of the night, requiring a second pill. Even still, the pain persisted in the morning.

Now, I really hate the side effects of narcotics. They make me woozy, my mouth even drier than normal, and I just feel off. And in this case, the hydrocodone didn’t help all that much. Fortunately, by Noon I was able to reach my ID specialist, who prescribed another antibiotic that I’ve used before, which attacks a different spectrum of bacteria. Clearly, I had picked up something, somehow, that was new.

I was able to manage the pain during the day by alternating acetaminophen and ibuprofen, and took two doses of the new antibiotic by the time I went to bed. More interrupted sleep, but I was determined to not take anymore narcotics because I had to drive to Boston the  next day and see my rheumatologist for a long scheduled appointment.

During the exam, we discussed pain management, and my issues with hydrocodone and related drugs. He mentioned that a number of his patients have had good results with cannabis medications to control pain. This had never occurred to me. Armed with that new idea and a prescription for lidocaine ointment, I went home.

A small drop of the lidocaine helped block the pain when I changed my dressings that night. I had a better sleep. But by morning, the pain came roaring back. I have not experienced anything this severe since I had major ulcers several years ago. Even with the ointment, I could not stop the nerves from zapping. I was really at a loss after bandaging my thumb.

Then I remembered a jar of hemp oil ointment that Al had gotten a while back for some joint pain. I’ve used it successfully for lower back pain on occasion. So I dipped a cotton swab in the jar and painted a line of hemp oil around the base of my thumb, just below the bandage. Within minutes, the intractable pain ceased.

Really, it was a miracle. And it lasted all day.

Needless to say, I’ve been applying it the same way since Friday. Between that, the lidocaine, and my usual skin care, plus the new antibiotic at last kicking in, my thumb (knock on wood) is finally healing again. I also discovered that the hemp ointment helps with another occasional discomfort—phantom itching of my right middle finger, about an inch above what’s left of it after surgery several years ago. It’s an extremely odd and annoying sensation, because I can’t scratch it to relieve it. There’s no there, there. But a little of the hemp ointment completely eliminated the itchy feeling. Who knew?

Which is a long way of saying that I am extremely grateful for CBD therapeutics and my wonderful medical team.

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.

What Works for Me

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Every so often, I experiment with different products to treat my digital ulcers. Most of the time, I end up going back to tried and true. This happened recently when I found a product for healing diabetic ulcers, which sounded great, but ended up macerating my skin and setting me back a few days.

So, here’s what has been working well for years (I have no promotional relationship with any of these products):

Bandages

  • I use Coverlet, which I buy online, because they are not available in any brick-and-mortar store that I know of. They are fabric, without any plastic coating, so they breathe well. Downside: if they get wet, the damp can seep through the dressing. So I’m just careful and use hand sanitizer to avoid that issue.
  • They come in different shapes and sizes, but my favorite size is 3″ x 1¾”, which I cut in half lengthwise to dress my ulcers with overlapping layers. The small oval size is useful, too. The bandages designed for fingertips, which have kind of a butterfly shape, are a waste of money, IMHO.
  • Like most bandages, they are light beige. One of these days, some smart entrepreneur will make bandages in a true range of skin tones. But I digress . . .

Healing Ointments

  • Aquaphor has been my go-to for decades, originally recommended by a dermatologist when I was just starting to deal with ulcers. A thin layer is essential. Too much ointment, and the skin will break down.
  • I also use Medihoney gel, which is a great healing salve. It has antibacterial properties. However, it can sting if the ulcer is deep. Use with caution, thin layer. If my ulcers last a long time (usually for many months), I find that switching back and forth between the two can improve my outcome.
  • I apply ointments with cotton swabs, never with another finger, to carefully manage the amount and to keep from spreading an infection that hasn’t yet made itself known.

Dressings

  • Medline Avant Gauze provides a breathable layer between ointments and bandage. I cut this into small rectangles as needed. It’s lightweight and very soft, and helps to keep my ulcers from getting too moist, which will break down the skin and impede healing. I discovered this gauze when I was healing my hands from surgery several years ago via a hypobaric oxygen chamber.
  • Another great, but expensive product, is Mepiform, which comes in 4″ x 7″ sheets, but you can cut it into small pieces as needed, to stretch your inventory. It is a breathable film with a gentle adhesive backing that you peel off. I learned about this from wound care experts, and it’s very helpful to protect superficial ulcers that don’t yet need ointment but need coverage to prevent deterioration. Also works as ulcers are nearly healed, and you need to wean them from bandages.

Hand Soap

  • Washing ulcers after you remove bandages can really hurt. I find that Cetaphil, or the drugstore generic, works best. Very gentle on very sore skin.
  • After I wash my hands and dry them, and before I put on a new dressing, I use small alcohol wipes to clean off any residual bandage adhesive that I might have missed.

Gloves

  • I always wear exam gloves when I cook or do any housework that could dirty or dampen my bandages. I avoid brands that have powder inside. I do not have a latex allergy, so that’s not an issue for me. Since the pandemic, they have become much more expensive, so I go by what’s available for a reasonable price. Right now, my favorite brand is Diamond Grip, because they are easy to get on and off, and they don’t tear. I used to favor Curad, but can’t find them anymore.

I hope you find this helpful. Digital ulcers are extremely hard to heal with scleroderma, especially when you have severe Raynaud’s, as I do, and resulting poor digital circulation. It takes a lot of patience and a good partnership with your team of physicians. Be well, and if you use other products that work for you, please share.

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.