Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Body

Cooped Up

· · 4 Comments

It’s 30 degrees F here today, but the real feel is about 19. It snowed over the weekend, just over four inches of fluffy white stuff, very pretty for a day and now shrinking into icy clumps. It’s too cold for me to take a walk, and the streets are patched with ice.

Ugh. I know it’s a lot colder elsewhere in the world, and there are far too many other urgent issues that demand concern. But right now I’m just feeling stuck inside, when I do my best thinking outside.

My ulcers are healing slowly, a bit better than last week, thanks to starting antibiotics when I realized I had at least one and possibly two infected fingers. But I still can’t do a lot of typing. Which also helps me think.

So I am just muddling along, trying to make the most of this cold day without getting too stuck in the muck I can’t control. I think we could all use a shovel to dig ourselves out, right about now.

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.

Improv

· · 1 Comment

I need to keep this short today, because my left ring finger is very sensitive, and it’s my main finger for typing with that hand. I’ve been losing the nail, and the skin beneath it is quite irritated. So I am typing with my usual three fingers on my right hand (thumb, ring and pinky) and using a rubber-tipped stylus to press keys with my left. Normally I use just my thumb and ring finger on the left.

This is slow going, sort of, because I can’t look at the screen as I type. But it’s better than nothing.

Over the years, I’ve learned to type seamlessly with only five fingers. I don’t think about it at all, until something like this happens. I hate voice-activated software, because it slows down my thought process and requires a lot of corrections—or, at least, it used to the last time I tried it, which was about seven years ago.

So, for now, I’ll keep up with this hunt-and-peck method until my finger heals up. Maybe I’ll even learn to type this way without looking. And who knows, maybe I’ll find an even better solution for the next, inevitable time ulcers get in the way of writing.

When things fall apart, creative opportunities abound.

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.

Inner Artist

· · 4 Comments

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

· · Leave a Comment

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.

Not the Weekend I’d Planned

· · 2 Comments

On Thursday, I set out for Philadelphia to spend a long weekend with our younger daughter. Never got Covid from Al, thank goodness, and he was on the mend. There’s no direct route from our Fair City to Philly, and it’s too long for me to drive, so I scheduled a combination of Greyhound and Amtrak. My nine-hour trip was relaxing and went off without a hitch—despite the Polar Vortex that had engulfed the Northeast for several days.

We’d been planning this long weekend for months—visits to art museums, dinners out, crowned by Sunday in New York City, visiting one of my favorite museums and having a special lunch before we went our separate ways back home. The weather forecast looked great for Sunday, warming into the low ’40s.

Friday in Philly was very cold, but we enjoyed a visit to the Woodmere Museum, which features local artists and had some wonderful works on exhibit. Later, I bundled up and we walked the short blocks to a lovely restaurant for dinner. We came home and sat up late, having a long, deep mother-daughter conversation.

The plan was similar for the next day. But by about Noon on Saturday, I started feeling off. As in, I felt like I might faint. Within an hour, I was lying on the floor in the bathroom, plagued by the runs and nausea. My daughter was a wonderful support and pegged the likely cause, a norovirus, which has become rampant this winter season. I rarely get stomach viruses, and I haven’t thrown up in decades, but this was another beast altogether.

My daughter went out to get some electrolytes and easy-to-digest foods, but one sip of the electrolytes had me retching in the bathroom. Over several hours, my GI tract emptied out and I was able to get some rest in bed. But by about 4:30 in the afternoon, I was still feeling off, so I called my PCP’s office back home and spoke to a triage nurse. Was there anything else I should do? After ticking off a full range of symptoms, most of which I did not have (no, this wasn’t a heart attack), she still felt I should go to Urgent Care or an ER, given my other medical conditions, just to be sure I would be okay.

And here is where the American medical system falls short. Given that it was past 5:00 p.m. by the time I finished the call, all but one Urgent Care in the area was already closed. The latter was supposed to be open until 8:00 p.m. I tried calling but got voicemail. So we drove there, anyway, since it was only five minutes away. And it was closed. No explanation, just a sign on the door that said they would be open again Sunday at 10:00 a.m. We were near an ER, but I really did not want to go, because it would have been at least a six-hour ordeal.

So we decided to go back home and see if I could actually hold down some ice cubes or even a little water. If I threw up again, we’d go to an ER. Sucking on an ice cube made me feel woozy again, so we looked online to see if there was another Urgent Care not too far away. We found one, a 20 minute drive, across the New Jersey state line, that was open until 8:00 p.m. But I wanted to be sure they would accept my insurance.

This time, I got a human on the line, who had to check if they would take my Medex supplemental insurance from Blue Cross/Blue Shield of Massachusetts. The answer was no, they didn’t take Medicare supplements, only Medicare Advantage plans.

Now, the problem with Medicare Advantage is that, for someone with a complex medical condition, these plans have a lot of restrictions on in-network physicians. Which is why I’ve held onto my traditional Medicare and Medex plan. This could all become more difficult under the new administration in Washington, which is a deep concern, but that’s a subject for future posts.

In any case, we decided to wait and see how I was doing before going to an ER. I was concerned that I’d run into the same issue with out-of-state insurance, and there was no point risking a five-figure bill for an ER visit unless it was really necessary. I also felt that the advice I got from the triage nurse was overly cautious, so she would not be liable for underestimating my risk.

Fortunately, the gamble paid off. Over the next few hours, I was able to drink nearly a cup of water, and my gut settled down. I slept, with a couple of interruptions, for ten hours. I was able to tolerate Tylenol and antacids before bed. By Sunday morning, I had an appetite again, and by Sunday evening, though still tired, I was feeling like myself. My daughter was doing well, and with any luck, she’ll dodge the bullet of this nasty, fast-moving virus.

We spent the afternoon binge-watching Queer Eye. I took a break to walk to the nearby supermarket and pick up some eggs. I was tired when I got back, but okay. I scheduled a flight home for Monday afternoon, since I was not up for any more long train-bus rides.

I still don’t know how I got this bug. Maybe from public restrooms in bus/train terminals? Or maybe I picked it up before I left home? At least it was short-lived, which is a hallmark of noroviruses. It ruined our wonderful plans, but we still had a meaningful, loving visit. And in the end, other than feeling better again, that’s all that matters.

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.