Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

body-mind balance

Adventures with Antibiotics

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Now that my blood pressure seems to be, thankfully, calming down, the next frontier is healing the infection in my left ring finger. As I’ve written recently, this has been going on for a couple of months, now. Two multi-week courses of Minocyline perhaps helped, but not enough to really clear the infection.

So, last Monday, I met with an infectious disease specialist to get some help. Finding a broad spectrum antibiotic for me is complicated, because I am allergic to a variety of treatments. This physician is a colleague of the ID doc I had switched to a couple of years ago, after my longtime specialist retired. The new doc was away, so I was scheduled to meet her. A good thing, as it turned out, because she is very empathetic and understood immediately what the problem was. She put me on a ten-day course of levoquin, which I had successfully used a couple of years ago for a severe digital ulcer infection.

Levoquin has a number of potential side effects. The most serious involve tendon inflammation and risk of tearing or rupture, especially the Achilles tendon. So far, thank goodness, that hasn’t happened. But, the evening I took the first dose, I discovered another side effect—insomnia. I simply could not fall asleep until after 4:30 a.m. While tossing and turning and looking up the drug’s impact on sleep (sure enough, I was not losing my mind), I also learned that you should not take ibuprofen with levoquin, because it can increase risk of seizures. I take ibuprofen daily to manage join pain.

So, the next morning, I wrote to my new ID specialist, told her what had happened, and asked about ibuprofen. While she was surprised about my sleep disruption (I always have rare side effects), she double checked and concurred that I should stop the ibuprofen while on this antibiotic and switch to acetaminophen to manage pain. Now, acetaminophen is fine for pain relief, but it does not treat inflammations.

This became readily apparent that night. I began to experience nerve pain in my infected ring finger and the middle finger next to it, which apparently had picked up some of the infection. Again, I struggled to sleep, and I could barely concentrate the next day. Finally, I gave up, contacted my geriatrics team which serves as my PCP, and my NP gave me a scrip for gabapentin to control the nerve pain.

I have not had to take this drug since 2017, when my hands fell apart and I needed hand surgery. It is strong. It makes me loopy and groggy. It exacerbates my blurred vision from Sjogrens. The side effects ease as my body adjusts, but it packs a punch. It also, thank goodness, brought my nerve pain under control. Would this have been unnecessary had I taken an antibiotic that wasn’t contraindicated with ibuprofen? I have no idea.

At least the gabapentin is helping me sleep. And keeping the nerve pain at bay. The levoquin appears to be helping, but I’ll be glad to complete this course and get back on ibuprofen. I have an appointment next week at the Wound Clinic at our hospital to find out how to heal the skin and grow back the nail on my finger—and, I hope, some new ways to prevent this from happening again.

Managing scleroderma is complicated. I’ve learned enough over the years that when I meet a new medical professional, I’m often asked if I am one myself. I’m grateful that I have access to excellent care and that, at least for now, my Medicare still covers it all (another topic for another time). I also am grateful that I can adv0cate for myself effectively. But it is exhausting. Doctors are overworked and miss stuff. You have to pay attention and do your research and speak up. There is no other option.

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: Stefano Pollio

A Break from the News

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This weekend, my dear husband persuaded me to get out of the house on a bitter cold Sunday afternoon for a visit to our art museum’s wonderful annual Flora in Winter exhibit. It’s always fun to see how area florists interpret artworks, and given the flood of horrid headlines here in the U.S. of late, the exhibit was all the more refreshing. Seeking out beauty is essential these days, to remind myself what matters.

Here are some of my favorites. 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.

No Easy Fix

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So, here’s what I learned at my optometrist last week, with a thanks to all who expressed concern and good wishes:

My blurry vision is due to the fact that my eyes simply don’t make enough tears, the result of Sjögren’s Syndrome that I’ve had for decades. The relief I’ve gotten from using EvoTears, which form a moisture-trapping film over my eyes, is real, but not enough to keep my corneas truly healthy. So, especially in my right eye, which is more blurred, my vision is effectively analogous to looking through a dirty car windshield. This isn’t cataracts. It’s Sjögren’s. And there’s no point in updating my eyeglasses prescription until my corneas heal, because I can’t get an accurate assessment of any vision changes right now.

The other important fact I learned: The Restasis drops (standard treatment for dry eyes) that I use before the EvoTears are in a castor oil suspension. I need to wait a half-hour between the two eye drops, or I’m effectively trapping the castor oil in my eyes. This explains some of the irritation I’ve been experiencing. So, that’s an easy fix.

My optometrist gave me samples of a varenicline solution nasal spray, which I’ve used before, that stimulates tears, to see if this in combination with both eye drops will help. There are two issues with this approach: First, the spray helps, not not markedly, so far. Second, the nasal spray is outrageously expensive, available only by prescription, and not covered by my insurance.

So, I’m back to finding a way to tolerate the scleral lenses. He checked both lenses for me, and there are no scratches, so however I injured my eye a few months ago was some kind of fluke in the way I inserted the left one. I will need to keep the lenses in at least four hours a day, four to five days a week, to really heal my corneas and maintain them.

With six fingers in bandages right now, including that left ring finger still healing from a lost nail and an infection, that’s a challenge. So, I’ll just need to tough it out with the medications I have until I have better dexterity again. (As a side note, I’m typing with just my left pinky on the left hand right now, and somehow I’ve learned to type by touch and don’t have to look at the keyboard. So, that’s some progress!)

If there is any advantage from dealing with scleroderma and its sidekick diseases for more than 40 years, it’s this: I know my body does eventually heal from assaults like this. It just takes time and a lot of patience and vigilance. As the weather warms and my hands improve in their seasonal cycle, I should be able to master the lenses again and find the right balance. I’m grateful that I have access to excellent care and medications and the scleral lenses, even if they are difficult to deal with. The alternative is much, much worse.

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: Unsplash+

Inner Artist

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When I was growing up, my favorite thing to do in the whole world was drawing. Give me a pencil and a pad of paper, and I was in heaven. One year for my birthday, my parents gave me a drawing kit by Jon Gnagy, whose popular 1960’s Learn to Draw show was must-see TV for me. Along with an instructional book that taught you to analyze objects in terms of spheres, cones, and pyramids, the box contained drawing pencils and paper, a soft eraser, a blending stick, and charcoal. I spent hours in my room, sitting on the floor, working through all the exercises.

As I got older, my favorite drawing medium became pen and ink. But sepia conté crayons, colored pencils, and pastels were also high on the list. Every summer, I would bring a drawing pad and implements on our family vacations to Cape Cod and sketch at the beach. I took summer art classes as a preteen and a drawing class in college, watercolor and drawing classes in my twenties, and since then, occasional classes at our wonderful art museum. For our young daughters, I would draw illustrations and, in a reprise of childhood, would bring my pencils and paper to the beach for our Block Island vacations.

In recent years, however, I have hardly drawn at all. Some of it has to do with damage to my hands from scleroderma. In fact, that’s probably the main reason. Not that I can’t still draw, but when I have a lot of ulcers, it’s just harder to hold a pencil for any length of time. Or so I tell myself. I use triangular rubber grips on my drawing pencils to ease the pressure, and that definitely helps. But something has been holding me back—most likely, just reluctance to push my hands too far.

Even so, I’ve had a New Year’s resolution for more than a year to get back to drawing, which I managed to do only twice in 2024. Each time, once sketching my African violet, and once on Block Island last June sketching Al at the beach, gave me great pleasure. But I still kept putting it off.

On Sunday, I decided to try again—this despite having five bandaged fingers right now. I needed to do something joyful and rejuvenating after a week of such dark news. I pulled out my colored pencils and my mostly empty drawing notebook, set up a vase of roses on a low stool, so I could look down into the blossoms, and drew. It was wonderful. I sank right back into that peaceful, meditative space of observation and interpretation. No matter the ulcers, I could still control the pencils as well as ever. When I finished, I felt relaxed and happy and in tune with my inner, non-verbal artist.

She’s been clamoring for attention. She deserves more.

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.

Inflection Point

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Monday dawned bright and bitter, with a sparkling five inches of snow weighing down evergreen boughs. As I write, I’m wrapped in my warmest long sweater coat, grateful to be inside, even as I enjoy the view. My appetite is back after last week’s close encounter with a norovirus, for which I am also grateful.

I am writing this on Monday afternoon, glimpsing a flash of a red cardinal in the yews beyond my window, because I have chosen not to watch the inauguration of our 47th president. I have never missed a presidential inauguration until today. I am refusing to watch, because I need to set boundaries for my emotional, physical, and spiritual well-being. In the weeks leading up to today, I have struggled to stay calm.

Our nation is at an inflection point. Democracy is at serious risk. Political power is for sale, and fear is the powerful’s cudgel.

How to stay sane and healthy—and be a responsible citizen in our country’s time of need? I have a few priorities, at the outset:

Stay informed by reliable, independent, accurate news sources. My new favorite is The Contrarian, which was launched last week by former Washington Post columnist Jennifer Rubin and ethics attorney Norm Eisen. Their commentary on the inauguration was priceless—sharp, insightful, and funny, which is a great salve.

Limit consumption of the above so that it doesn’t consume all of my attention. Not yet sure what the right balance is. This is a work in process. My blood pressure will be my guide.

Call my Senators and Congressional Representative to express my concerns. Here in Massachusetts, I’m fortunate to be represented by ethical politicians with a lot of experience, who share my values. But I’m also trying to encourage friends and family elsewhere to do the same. You can find your Congresspeople here. Our voices matter, especially collectively.

Invest my energy locally, to improve my community. For several years I have been involved in efforts to preserve and grow our city’s urban forest and strengthen our ability to withstand climate change. This volunteer work is very rewarding and has literally been saving my sanity. And the trees we plant will outlast whatever happens in Washington.

Write. I continue to work on Novel 2 and seek a home for Novel 1. My art is my way to understand my world. It is an outlet for angst and a refuge. It is both the most difficult work and the most essential.

This journey is not the one I expected to be traveling at this point in my 70 years on the planet. But here we are. The only thing that is certain is the present moment. And the only thing we can control is how we choose to respond.

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.