Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

finger ulcers

Rx for TP

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The Great Toilet Paper shortage may have eased for now, but in recent months, when little was to be found on grocery store shelves, I found myself confronted once again with challenges of personal hygiene. As I’ve written before, cleaning up after #2 is not easy when your hands don’t work well. This has been exacerbated for me recently with painful calcium deposits in the pads of both thumbs. But with toilet paper a scarce commodity, I’ve had to be conscious of conserving paper—as any of you with scleroderma well know, that makes it extra hard to really do the job.

For several years I relied on “flushable” wipes, which are a very efficient solution. But I had to give up after the second of two disastrous lessons in the physics of sewer line back-ups into our basement. As our plumber said, there’s no such thing as a flushable wipe. Indeed, not only do they clog plumbing, but also those wet wipes that make it into the sewer system cause major problems in public waste sanitation systems, creating what the industry terms “fatbergs” that destroy expensive pumps.

After our trip to Greece last summer, where you quickly learn to toss all toilet paper in the handy waste basket next to the toilet, because the plumbing and sewers can’t handle even regular toilet paper, I tried a modified approach of disposing my wipes, wrapped in more toilet paper, into the bathroom waste can. But this uses a lot of paper, once again, and the wipes are also still not biodegradable. Moistening toilet paper with water doesn’t work well, either, if (a) you have bandages that you don’t want to get wet, and (b) the toilet paper often disintegrates.

So, this brings me to my latest solution, which I found thanks to all the articles and blogs being written about toilet paper alternatives when none could be found due to the pandemic: a postpartum peribottle. Designed for women to ease soreness after childbirth, this is a soft rubber bottle with a spout with a hooked end, so you can hold it upside down, aim and squirt. It does not eliminate the need for toilet paper, but it certainly cuts down on how much.

I found one for $15 online, and it has a collapsible spout and even a little bag for travel. It takes a little practice, but it is definitely the easiest and cleanest solution I’ve come across so far. And it’s far cheaper than installing a bidet.

Even if you don’t have hand problems, using a peribottle is a mighty convenient way to conserve toilet paper—which, in turn, saves the trees that toilet paper is made from. And saving trees helps to moderate climate change and maintain animal habitats—which matters for a host of reasons, including the mounting evidence that human encroachment on natural habitats contributed to the way that a bat-borne virus morphed into the COVID-19 pandemic. It’s all interconnected, folks.

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: Jasmin Sessler

Unnecessary Procedures

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For well over a year, I’ve had a piece of grey calcium protruding from the pad of my right thumb. As I wrote back in February, I finally saw my hand surgeon and worked out a plan for him to remove it—the challenge being that it’s only the tip of a long chain of calcium that runs down the entire thumb. It gets in the way, hurts when I bump it, and generally makes me drop things.

Surgery was originally scheduled for this spring, but, of course, the pandemic put that plan on hold. I got a call at the end of May, as the hand surgeon’s office began to reopen, to see if I wanted to reschedule for June, but I declined. It just felt too soon—a good thing, as it turned out, because I got an infection in the left thumb that has taken weeks to clear, and I know he wouldn’t have operated under that circumstance, even if the opposite thumb was the problem.

The situation in the past few weeks has gotten really uncomfortable. With the clearing infection on the left and protruding calcium on the right, I was having greater and greater difficulty doing basic tasks. I had a note in my calendar to call the hand surgeon’s office this week and was now ready to get on his schedule as soon as possible.

Then, Sunday night, as I was changing clothes to get ready for bed, I felt a sharp twinge in my right thumb. Then I noticed some blood on my nightclothes. Sure enough, that nasty chunk of calcium had finally, finally, broken off of its own accord. It left a hole in my thumb, about an eighth of an inch deep. The tip of the rest of the calcium chain was barely visible and far enough beneath the surface to remain inoffensive, for now.

I was thrilled. No more need for surgery, no more risk of exposure in a medical setting to infections or Corona, regardless of precautions. From long experience, I knew the hole would quickly close up on its own. So I rinsed it with peroxide, bandaged it with antibacterial ointment, and went to bed.

By Monday morning, it was already half healed. Warm weather certainly helps. Best of all, I can finally use my right thumb again.

This is not to say that, if I’d had no relief, I wouldn’t have gone ahead with the procedure. But our bodies do have a way of healing themselves. I kept hoping this would happen on its own, which is why I took so long to see my hand surgeon in the first place. As if to drive the point home, in Monday morning’s New York Times was this article about how people who have had elective procedures postponed during the pandemic are actually staying healthier than expected.

Complex trade-offs. Grateful that the scale of options swung in favor of non-invasive, this time.

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: Roman Kraft

Thumbkin

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Memorial Day Weekend was low key for me this year. Not only because of the pandemic, although that certainly set the tone. The weather wasn’t the culprit; it was quite beautiful here for most of the weekend. There was simply nowhere that I felt like going to mark the beginning of what will be a most unusual summer season.

Some of my mood involved wanting to avoid crowds. I understand everyone’s restlessness and desire to get out and away, but I really don’t get all the celebrating without social distancing and masks. Pretending it’s over or choosing to ignore the risks to others from your own actions is to be willfully irresponsible. The virus doesn’t care how impatient we are. It will always have the last say. Tragically, the consequences of crowding over this weekend will be all too clear in a few weeks as the infection rates climb again.

The rest of my mood was due to spending the better part of the past few days recovering from a sudden and severe infection to my left thumb. I don’t know how I picked it up, though I suspect a visit to one of my providers in a hospital office a couple of weeks ago, when I was not allowed to wear protective gloves (hospital policy). In any case, several days after that appointment, my thumb started acting up, and by Monday, a course of topical antibiotics didn’t help, so on Tuesday I started my standby antibiotic to stem the tide.

It seemed as if this was calming down the discomfort for a couple of days, but by Thursday, I was experiencing more pain, and by Friday, I had spent a restless night trying to deal with what was becoming one of the worst bouts I’ve had with pain management in about three years. On a scale of 0 to 10, I was hovering around 8 or 9. The sensation was akin to the literal purpose of a ‘thumbkin’— thumbscrew torture—that, and unpredictable electric shocks from inflamed nerve endings. Not fun.

Fortunately, my infectious disease specialist prescribed a stronger antibiotic on Friday, and after the third dose on Saturday, the swelling began to recede and the pain was significantly less intense. I am exceptionally grateful to him, given that he’s the head of infectious diseases for one of our local hospitals and quite busy with COVID-19 cases. I’ve known him for at least 20 years, he trusts my account of symptoms, knows all the antibiotics I’m allergic to, and took an educated guess about this one, which seems to have done the trick without setting off a reaction (so far). We speak by a telehealth appointment this afternoon to review status.

The swelling and aftermath at the tip of my thumb caused the skin to rupture and allow pits of calcium and liquified calcium to escape, which also helped to relieve pressure and pain. I’ve known for decades that there’s a Milky Way of these pits in both thumbs due to calcinosis, and any inflammation or swelling stirs them up. I’ve been carefully debriding the wound, another skill I’ve developed over years of dealing with digital ulcers, and will be babying this thumb for weeks to come as it heals.

But here’s where the beginning of the summer season really is something to celebrate. It’s getting warmer, always good for healing. My energy bounced back pretty quickly after catching up on sleep over the long weekend. I’m feeling much more like myself again, and I’m grateful for the extra time to rest.

This infection is also a strong reminder that microscopic bacteria and viruses are ever present. Just because we can’t see them with the naked eye doesn’t mean they aren’t there. Skin is our first line of defense against disease. For those of us with scleroderma, caring for our skin and overall health is just a whole lot more complicated than hand washing. To get through this pandemic, however long it lasts, however inconvenient the restrictions may seem, there is nothing more important right now than taking the needed precautions that will protect ourselves and others, whether known or not.

End of rant. Be well.

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: Kon Karampelas

Mask-maker, Mask-maker, Make Me a Mask

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More than half-way through Passover now, I’m finding the holiday’s food and kitchen restrictions (no leavening, separate dishes and utensils) a fitting metaphor for our new reality. That, and the spread of matzah crumbs throughout our home. I’m also finding the rituals and rules about what and how to cook strangely comforting. Having our mini Seder last Wednesday night via Zoom with two dozen family and friends from across the country was wonderfully uplifting. Sticking with our Passover observance feels like an act of defiance in the face of this pandemic, that it can’t uproot everything we hold dear.

But there is still a lot to contend with, of course. Here in Massachusetts, we are being told to wear fabric face masks when going anywhere that makes physical distancing difficult, like grocery shopping. So, on Sunday, I pulled out my trusty 35-year-old Viking sewing machine and experimented with making masks out of old pillow cases.

I still love sewing, but it has become much more challenging since I had my hand surgery several years ago. Tweezers are an essential tool for threading the needle. I have to constantly be mindful not to reach quickly as I adjust the sewing foot, thread the bobbin or change stitch settings, or I’ll mash what’s left of my fingertips on metal. Then there’s the nuisance of cut threads sticking to my bandages.

Nevertheless, I persisted, using a pattern I’d found online, one magenta-and-pink and one cobalt-blue pillow case, and a few pieces of quarter-inch elastic from my five-decades-old sewing stash. I cut out enough fabric for several masks, but only finished two—in part, because I skillfully managed to sew the second one together wrong side out and had to pull all the stitches, a real challenge for my hands. I made an opening in the back for an insert. From what I’ve read online, coffee filters are considered one of the best options.

Along the way, I discovered a couple of mistakes in the directions. The biggest issue is how long to make the elastic loops to go over ears. The pattern said seven inches, which seems to be standard advice, but that’s way too big for my narrow face. So, a word to the wise: If you decide to sew your own mask, plan on the first one being a prototype that needs adjusting.

Here is a good article from The New York Times that includes everything you need to knows about wearing and making your own mask.

I hope, Dear Reader, that whatever your circumstance, whatever holiday you may have been celebrating or will be, soon, that you are staying safe and well. And if you can’t sew, here’s how to make a mask from a teeshirt that requires no stitching.

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.

The New World Order

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It’s Monday afternoon, and I’m watching huge, fluffy snowflakes fluttering to earth outside my window. They land gently, without a sound, the perfect antidote to the frightening headlines on my news apps and comments in my Twitter feed.

I should stop reading it all, I know. But I feel compelled to keep up with the latest COVID-19 developments. It’s like we’re all trapped in this horror movie, but we can’t close our eyes. We need to know how it ends. And we can’t leave the theatre.

I find solace in meditation, my writing, helping my clients to communicate their efforts in response to the pandemic, connecting with family and friends, studying for my German classes (now online), watching videos of people in Italy making music from their balconies.

And I’m finding workarounds to being mostly home bound. Last Friday, instead of driving into Boston for a long-awaited first appointment with my new rheumatologist at Boston Medical Center, I made an arrangement with him via MyChart messages to speak by phone. The Rheumatology Department is in process of switching over to telemedicine, but not there quite yet.

He was very generous with his time. We spoke for 40 minutes about a wide range of my concerns, not only my health status, but also about social distancing and risks of the virus for other family members. As for me, he said my age is a greater risk factor than my scleroderma. This varies, of course, for each individual, but in my case, my lung involvement has remained a lesser issue, thank goodness.

Earlier last week, my hand surgeon’s office checked in about my upcoming procedure to remove a bothersome calcium deposit from my right thumb. We agreed to postpone until June, earliest. I’ve been living with this annoyance for at least a year. No point in doing it now, even in an outpatient surgical center, as planned.

Sleep does not always come easily. It seems that I get a good night’s rest every other night. It’s hard to turn off the worries about what the future holds. But at least I’m not driving anywhere long distance right now, which is riskier when I’m fatigued.

Instead, I’m trying to walk outside as often as I can. Over the weekend, I took a long walk to our city’s oldest park, to clear my mind and get some exercise. It was crisp and sunny. On any normal weekend afternoon, with such good weather, the park’s playground would have been crowded with kids and parents. Instead, only one couple with a small child played briefly on a swinging saucer. Traffic was light. A handful of people walked or jogged around the park’s narrow pond, some alone, some in pairs. We passed each other with a smiled greeting and six feet of separation.

As I rested on a bench, a squirrel bounded across the grass. In all the years I’ve been observing squirrels, I don’t think I ever noticed that they jump instead of walk from place to place. Instead of being wrapped up in my head, I had slowed down my mind enough to simply pay attention. A good thing.

A guided meditation I was listening to this morning noted how important it is to see and acknowledge all the little things in life that are going right, right in front of us. It is so easy to get sucked into the terrifying vortex of COVID-19, the news of exponentially mounting cases, the sudden deaths of loved ones, the exasperating muddle of federal leadership. While it’s essential to be alert and informed by reliable sources, too much information doesn’t help me cope.

So right now, I’m just going to watch the snow fall.

Be well.

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.