Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

finger ulcers

Line of Sight

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A few weeks ago, when I had my eyes dilated during my annual exam at a local optometry college, I learned some surprising news. Despite the fact that I have very dry eyes from Sjogren’s Syndrome, I might actually be able to wear contact lenses.

These are not your normal contacts, but scleral contact lenses, typically prescribed for people with irregular corneas. They are gas-permeable, but larger and lofted higher than regular contacts, essentially floating on a saline solution over the entire cornea and resting slightly beyond the iris on the white of the eye. For people with severe dry eyes, like me, they can provide constant lubrication.

So, I decided to find out more. Last Thursday, I went back to the college—which operates a teaching optometry clinic—and met with one of their dry eye faculty specialists, along with a fourth year student. Another fourth year student ended up joining us, because she had written her first year research paper on scleroderma.

There were two major questions to answer: First, could we actually get a pair of sample scleral contacts into my eyes; second, would my hands enable me to do this for myself? The lenses are inserted using a little plunger. You fill the lens with solution and then bring your eye down to it. Not an easy feat. It took three tries on each eye by the specialist, with me holding down my lower lid and him holding the upper lid and the lens-with-plunger, to get it in. But we did it.

Miraculously, I could see more clearly, just because of the moisture being trapped by the lenses, even as they were not prescription. However, the big challenge is that my upper eyelids are abnormally thick from scleroderma. Hard enough for two people to insert the contacts. Also, I could feel the lenses underneath my upper lids when I blinked—possibly because my eyelids are less flexible. And they burned a little, possibly because the whites of my eyes were drier since I didn’t need to blink as often as I normally do.

We were all excited that I could actually wear them, but this is far from a home run. The specialist gave me a 50:50 chance of eventual success, but wanted to go the distance if I was willing. There are a lot of customized adjustments he can make to the size and shape of the lenses, as well as a special coating that will keep the outside wetter and less irritating to my inner eyelid. There are also a lot of adaptive tools to enable me to insert them myself. But we’ll only know with the real thing.

Fortunately, with these lenses, there is a try-out period, and if they don’t work, I could return them for a full refund as well as a partial refund of the exam fee. The clinic staff will research whether this is covered by Medicare and my Medex plan. I have no idea if it will be successful, but I feel like it’s worth a try, because if it does work, my eyes will be healthier and vision much clearer than I thought possible.

In the meantime, the students are learning a lot from our meeting. As the lead student said to me, “I have a million questions going through my head.” “Fire away,” I answered. At the very least, whatever happens, he’ll know how to better diagnose someone with my complex issues in the future. Well worth the 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: Siora Photography

Touchy Choices

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I’ve been venturing out a bit more, lately, for various appointments. Wearing a mask in public is both required here in Massachusetts and a no-brainer, for my own health and those around me. But I’m debating whether I always need my second level of protection against Covid: disposable gloves.

I have a stash of gloves that I use for cooking, because I learned long ago that touching raw food with bare hands is an invitation to infected ulcers. So now the question is whether I need to wear them whenever I go out to a place where I may have to purchase something in Covid Time.

Here’s the problem: Inevitably, with credit card terminals, you have to push a button on the screen or use the pen device to do same. I really, really don’t want to touch any surface that’s been touched by so many fingers. Even the most conscientious sales clerk doesn’t sanitize the terminal regularly.

My default up to now has been to go for the extra protection and wear gloves. But sometimes it seems like overkill, and it’s also not great from an environmental standpoint to use all of those disposables that will live forever in a landfill. So this Monday, when I had a meeting that didn’t involve any financial transactions, I skipped the gloves. When I opened the doors to the office building, I pulled my sweater sleeve over my hand so I didn’t have to touch it. I was vigilant about not touching other surfaces. And when I was all through and back in my car, I used hand sanitizer.

Here’s hoping I didn’t miss a step. The whole thought process for a simple trip beyond my home safety zone requires so much concentration, being very mindful of everything I touch to avoid the virus. On the one hand, given my Covid protection protocols, I’m probably at less risk than ever of picking up an infection in one of my digital ulcers. On the other, I’ve still had a few minor infections that I could handle with topical ointment, and one major infection several months ago from having to go gloveless to a medical appointment in a local hospital, per their regulations.

So it goes. I hope you, too, Dear Reader, are doing all you can to keep yourself and your loved ones and anyone else with whom you come in close contact healthy and safe.

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: Emin BAYCAN

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