Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

hands

In the Weeds

· · 10 Comments

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.

Waste Not

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I use a lot of bandages. Right now, I need six bandages during the day and five at night to protect my digital ulcers. So that’s 11 every day, 77 a week. My favorite brand is Coverlet, because they are made with very soft fabric with non-irritating adhesive. They come 100 to a box. I buy a dozen boxes at a time, and in the winter, will go through a box every 10 days. When I’m down to two boxes, I order another dozen, to be sure I’ll get them in time, because they’re not available in stores.

So far, knock on wood, there have been no supply side issues with getting them, but I’ve really tried to keep on top of it. No other brand comes close.

All those bandages generate a lot of waste paper—the paper protective cover and the paper backing to the bandage adhesive. It’s bothered me for many years. But now, I’ve found a solution.

Recently, we enrolled in a composting program that’s available in our fair city. Not only do they accept food scraps, but also certain kinds of paper. Apparently, the paper actually helps in the composting process. And the kind of paper used to package my bandages is included in their “ok” list.

So, now, once a day, I empty all my bandage paper scraps into our kitchen compost bin, and when full, the biodegradable bag goes into the larger biodegradable liner in our outdoor compost bin, which is collected on Friday mornings by our compost service.

Not only are my bandages protecting my fingers, but their waste paper is helping to keep the planet a little healthier, too. A win-win.

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: Toni Reed

Little Victories

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No doubt. It’s winter here in New England. Over the weekend, we got about a half-foot of snow, plus some icy rain. Our bird feeder’s squirrel-blocker, a plastic hood that hangs above the feeder, looked like a snow hat. And it’s cold, hovering in the ’20s F. Today we plunge into single digits.

Despite the bitter weather, which I find rather intimidating, I forced myself out the door twice in the past few days. My first jaunt around the neighborhood, on Saturday afternoon, was my first venture out of the house since before Christmas, because of that darn respiratory, non-Covid virus that dogged me for a good 10 days. It felt so good to breathe fresh air. And I finally have my voice back.

Monday afternoon, I ventured out again, along my half-hour route. I was bundled up in my warmest, full-length down coat, lined boots, scarf, wool cap, aviator hat over that, and mittens. I looked ridiculous. But I really don’t care. It’s a priority to get out and walk whenever I am able, to clear my brain, stretch my legs and back, move my joints, and exercise my heart. I definitely feel better when I get home.

I also feel just a little bit invincible. (Yes, I know, that’s an oxymoron.) If I can get out and walk a half-hour in freezing temps, then I’ve overcome my Raynaud’s and scleroderma for another day. And that, Dear Reader, simply feels great.

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.

Sew On and Sew Forth

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Finding truly warm, affordable clothes with some style is not all that easy. Ever on the lookout, I find that too many offerings that look warm are actually made with synthetic fibers, like polyester, acrylic, or nylon, which don’t really keep you warm and can trap perspiration, making you colder. But good wool garments are expensive.

So, I decided my best alternative was to sew myself a sweater jacket for winter. A few months ago, I found an easy pattern and some cranberry-red alpaca knit fabric on sale online. Next step was to get the fabric dry-cleaned, to preshrink it (this prompted the dry cleaner to request my signed understanding that the fabric might ravel in the process—which didn’t happen).

But then the fabric, now ensconced in a plastic dry cleaner bag, lay folded in my office. For weeks. The problem was two-fold: I didn’t have time/couldn’t make time to work on the project due to holidays et al., and, more importantly, I have been wrestling with some very sensitive ulcers on both thumbs and my right ring finger. No way to cut out the pattern, figure out any adjustments, cut the fabric, and sew it up when I really couldn’t handle scissors or pins.

That is, until this past Sunday, when my hands had finally progressed enough, Thanksgiving and Hanukkah celebrations were past, and I decided to just get down to it. Cutting the fabric was still hard, despite using spring-loaded shears, but I made a lot of progress, especially because I could use my serger, which sews, trims, and finishes seams all in one step (but you really have to pay attention, because seams can’t be resewn easily!). Wool is also very forgiving, with any wobbles in the seams (due to weaker hand control) easily steamed and straightened. Still another sewing session needed to finish it, but I’m pretty pleased (ever the perfectionist) with the outcome.

And, it’s delightfully warm.

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.