Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

mindfulness

Spring at Last

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On Sunday, I walked outside without a coat for the first time this year. What a blessing, especially after feeling so cooped up 10 days ago with Covid. It’s been spring on the calendar for more than a month, but this was the first day that really felt springy.

As far as I can tell, I’m done with the virus. Whatever lingering sinus congestion (mild) is now attributable to allergies (the downside of spring). When I went for a routine pulmonary function test on Friday, at first the respiratory tech was not sure if she could administer it to me, given my recent Covid experience. But fortunately she was able to check with the hospital’s chief of infectious diseases, who agreed with my expectation that, given revised CDC protocols, I was free and clear.

(In case you’re not aware, the new guidance basically says that after 24 hours free of fever without OTC meds and no symptoms, you can go out masked. After five days of masking, you no longer need the mask, which is where I was on Friday, eight days from no symptoms, thanks to Paxlovid.)

I completed the test, which is never easy at this point, but the good news was that my diffusion rate (not stellar) had not really changed—which has been the case for several years now. So that was encouraging.

And a relief after my other health debacle last week—skillfully scratching my cornea in my right eye on Thursday when I was putting in my scleral lenses. I wasn’t sure, at first, why my eye was bothering me with the lens in place, because it bathes my eye in saline. But once I removed it, my eye continued to smart, and going outside in bright sunshine was truly uncomfortable.

Don’t try driving with a scratched cornea. I did okay, but my eye was tearing and I could barely keep it open. Bad idea. Very bad idea. Back home, after flushing my eye with drops, I used some eye gel and covered my eye with gauze and paper tape for several hours, which made it tolerable.

Fortunately, on Friday, before the PFT, I saw a specialist at the local college eye clinic, who assessed it and thought I was on the mend, though he was prepared to do an emergency debridement if need be. Thank goodness that wasn’t necessary. And I was fine by the weekend.

So, all the more reason to be glad to walk outside without a coat or a jacket or even a sweater on Sunday. No more Covid. No more eye pain. Just sun and flowers and blooming buds on our new cherry tree. A good way to begin a new week.

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.

Best Laid Plans Department

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And so, despite my best efforts, I did get Covid last week, after all. In fact, I tested positive on Tuesday afternoon. At first, I thought it was just allergies. All the trees have finally bloomed here, and pollen is in the air.

Just to be sure, though, I took a test. When I first looked at the results, I thought I was still okay, but there was the faintest positive stripe. So I repeated it. Same thing. And by evening, I didn’t really need to doubt it. I was starting to get chills, and my throat was swelling.

By morning, I felt truly rotten. No fever, but all the symptoms I get with a virus, especially severe Raynaud’s and joint aches and headache and sinus congestion. My hands felt like blocks of ice, and it took at least a half hour of huddling under blankets and meditative breathing to regain feeling. I called our primary care nurse practitioner’s office, and by midday I’d gotten the go-ahead to start Paxlovid.

This is the second time I’ve caught Covid. Last time was two summers ago, right before we were supposed to go on vacation, causing a total reorganization of travel plans.

This time, it hit right before my 70th birthday and Passover, which begins tonight. So all plans for both had to be scuttled and rethought.

Thanks to my wonderful daughters and husband, my birthday turned out to be a lovely celebration, despite being sick. The Paxlovid kicked in enough for me to feel somewhat better when I woke on Thursday—and discovered in my email a gift certificate from the family, orchestrated by my daughters, for an Air BnB writing retreat, good for anytime I want to go. In addition, my younger daughter had created a fantastic 70th birthday video with greetings from family and friends, including some people I had lost touch with over the years. It gave me a great boost and is a wonderful keepsake.

Al brought home flowers, and later, he picked up a nice dinner from one of our favorite restaurants to eat at home. So, I felt fully celebrated and grateful—and resilient. Take that, Covid!

We’ve had to upend our Passover plans, because we are just barely clearing the hurdle of having to mask in public (five days after you feel better, have no fever and no symptoms). So we are doing a Zoom seder with our immediate family for the first night, and just me and Al, the second. It’s a small and quiet holiday this year. Given my energy level post Covid, that’s just fine. Cooking for just the two of us on Sunday wiped me out.

The one bright side of this, as my Boston Medical rheumatologist said to me weeks ago when we were discussing pros and cons of a spring Covid booster shot, now that I’ve had the latest variant, most likely JN.1, I’ve gained some protection against it. At least, I sure hope so. This virus is not to be messed with, especially for those of us with compromised immune systems.

And so, Dear Reader, I hope you stay well and avoid Covid. But if it nabs you, be sure to ask for Paxlovid. It significantly reduces risks of the virus and really made a huge difference for me. The most recent research says chances of rebound are slim. It makes your mouth taste bitter, but that’s a small price to pay.

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.

Something Completely Different

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The sun is bright overhead as I write on Monday afternoon, a few hours before the solar eclipse is set to begin here in Central Massachusetts. We’re expecting that the moon will block about 90 percent of the sun at 3:28 p.m. I have my two pieces of cardboard to create a camera obscura, a pinhole in one piece through which I can project the eclipse’s image onto the other, so as not to fry my retinas.

On a day of a rare celestial phenomenon, it seems all the more appropriate to break from my routine here and share some good news that has nothing to do with scleroderma. I’ve occasionally menioned on this blog about writing my yet-to-be-published work of historical fiction, Line of Flight, set during the First World War. It’s the story of a mother’s journey to find her estranged daughter, who has run off to France with her beau to volunteer for the French ambulance corps. The good news: within the past few weeks, two excerpts from Line of Flight have published on two separate online literary journals.

And so, in an act of shameless self-promotion—and if you’d like to read something that will take your mind off this nasty disease and related medical concerns, or any other stress in your life—I share a few links:

  • The opening of Line of Flight appears in the April 2024 edition of Embark, which presents openings of ten unpublished novels, twice a year. This happens to be their 20th issue, and I’m in good company. You can read my novel’s opening here.
  • A chapter called “The Sinking” is in the spring 2024 edition of The Writing Disorder, an aptly named literary journal for those of us afflicted by this form of art. The action takes place on the fated last voyage of the Lusitania on May 7, 1915. Read it here.
  • I’ve started a Substack newsletter, History Making, that digs into lessons learned from researching and writing historical fiction, as well as other works of historical fiction that I admire, the long and winding road to publication, and related topics. I’m publishing a post twice a month, and subscriptions are free. So, if you’re curious about the writer’s life and this genre of fiction, you can find it all here.

I said none of this has anything to do with my scleroderma—but that’s actually not quite true. When I was growing up, my hands were extremely dexterous. I could make any kind of art or craft, and I played numerous musical instruments. Once, when I was perhaps ten years old, I recall lying in bed and thinking about what it would be like to lose one of my senses. I decided I would never want to lose the touch of my gifted hands.

That was not to be. But I have realized over the decades of dealing with this disease that writing is my art form, my way of creating images and making music. It took me eight years and twelve drafts to get my manuscript to the point where I feel ready to seek publication. And I’ve been seeking an agent and/or publisher for the past two. That involves a lot of patience and persistence and a refusal to give up—all skills I’ve honed through living with scleroderma.

So, getting this far with my novel is a major milestone, indirectly inspired by managing a complex and chronic disease. And, with any luck, my manuscript will get into an enthusiastic publisher’s hands sooner than the next total eclipse of the sun.

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: Jongsun Lee

False Alarm

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I had a routine mammogram a couple of weeks ago. Not my favorite “non-invasive” test, as any woman knows. As the tech was arranging me for the inevitable squash grip of the mammography mammoth, I asked her why she had chosen this particular technical specialty. Her answer: “Because it saves lives.”

Fair enough. Fifteen minutes later, I was glad to be done with it for another year and on my way home.

Or so I thought. A week ago Sunday, I received an email about a new message for me in MyChart, my online portal for medical records and communication with my teams here at home and at Boston Medical. I took a look. No problems in the right breast. Here’s what it said about the left: “Indeterminate calcifications in the upper outer quadrant require additional views. Diagnostic mammogram is recommended for further evaluation.”

Calcium deposits in breast tissue (I learned, from a quick internet search) can be a precurser to breast cancer. A letter in my file indicated that I should set up an appointment for another series of X-rays, adding this supposedly reassuring sentence: “Most such findings are benign (not cancer).” Probably just a nuisance, I concluded. But I wondered, with so much calcinosis in my fingers, could this actually have something to do with my scleroderma? And what would that mean?

As luck would have it, I had a routine appointment with my Boston Medical rheumatologist the next day, so I filled him in and asked what he thought. Was it possible to have calcinosis from scleroderma in breast tissue?  Sure enough, yes, it’s possible. Indeed, it’s possible for calcinosis to show up in all kinds of strange places. He shared a research study with X-rays of some pretty dense (and very uncomfortable-looking) calcification of breast tissue. We talked at length about how to proceed, how to avoid unnecessary diagnostics, and more, and concluded that he would send a referral to Boston Medical’s breast health clinic, which is one of their top specialty clinics, to get me into their queue, just in case.

I went home in a terrible mood. Before I had thought this was probably nothing, but after that conversation, it felt like something more serious. I called the radiology clinic at home and was able to get an appointment for first thing the next morning to do the additional mammograms. I was told that I would get results at the appointment, which I appreciated.

When I got to radiology last Tuesday morning, I told the tech that I have calcinosis from scleroderama. She did not think that would be a likely factor in the results, but I asked her, nonetheless, to tell the radiologist. After three very squished close-up scans of my left breast, I waited in the exam room for the outcome. The radiologist came in and said the words I was hoping to hear: not related to breast cancer. I have “calcification of some small vessels” from scleroderma. Nothing to worry about.

What a relief! When I got home, I wrote my rheumatologist about the results and asked what that meant. Would some calcified small blood vessels lead to eventual tissue death? Was there anything more to understand about this? His answer: “Calcinosis unfortunately remains a mystery.” I can live with that. No sense speculating about it. I’ll find out in due time if it matters or not, and meanwhile, there’s nothing to be done.

So, there you have it. This very strange disease continues to throw some very wild curve balls. But at least this episode wasn’t as scary as it seemed. I write this post for you, Dear Reader. Mammograms do save lives. They can also create uncertainty and may require clarification. In case you get a similar worrisome result from a mammogram, be sure to advocate for yourself and explain your full medical situation. It 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.

Image: John Cafazza

Soundscape

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As I was lying on an exam bed Monday morning, during a routine echocardiogram, I was thinking about sounds. Not just the sounds as the tech pressed the ultrasound probe to my chest and took photos—beep—typed—clackety-clunk-clackety-clackety-clunk—and played audio of my heart beat—woah-wacka-woah-wacka-woah. That alone was quite the medley.

I was also listening to the sounds of the Boston Medical office building—the whoosh of air through metal ducts in the ceiling, the padding and occasional squeak of rubber-soled shoes along the corridor, someone’s cell-phone ringing, muted conversations among the medical staff.

Medical offices have a very distinctive soundscape. Especially offices that are tied to hospitals. There is a certain muffled white noise that permeates the space, some combination of the type of linoleum and carpeting, sound-absorbing tiles on high ceilings, the cushioned shoes, the air ducts. Conversations ebb and flow around corners and through walls of exam room warrens. You can hear personal details that you shouldn’t. You can sense the tension in sotto voce murmurs.

In waiting rooms, I’ve decided there are basically two kinds of people: those who respect the presence of others and keep their voices down, and those who think they’re in their own living rooms and yell on their phones or play loud videos or music without wearing earphones. Some waiting rooms post signs that cell phones are not allowed. Some places enforce those rules. Others don’t. I have yet to determine a pattern of which kinds of doctor’s waiting rooms are more likely to be quiet or noisy. It would be an interesting subject for research.

All I know is if you dropped me blindfolded into a medical office building, I would know where I was immediately, just by the sounds. Which also means I’ve spent way too much time in medical office buildings.

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: Pawel Czerwinski