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Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

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COVID-19

In Stitches

Evelyn Herwitz · October 3, 2023 · 2 Comments

It’s been five years since I last had calcium deposits removed from the bridge of my nose, the fifth time I’ve endured this procedure. Usually, I take care of this annoying issue about every three years, but the pandemic put that on hold this time around—which ultimately meant that the calcinosis got worse.

Originally, I thought the problem was caused by the weight of my glasses. I get calcinosis in my fingers at pressure points, so it made sense. But I switched from wire frames to very lightweight Silhouettes years ago, and it has not solved the problem.

No one really knows why scleroderma can cause this build-up of calcium in unwanted places. My theory is that, regardless of how thoroughly my ENT plastic surgeons have tried to remove the calcium growths from my nasal bone, a seed remains that grows more calcium crystals over several years. They always biopsy what they remove, and it always (thank goodness) is benign. In any case, once it gets big enough, it becomes unsightly and increasing uncomfortable, stretching skin that is no longer very elastic.

This spring I met my new surgeon, Dr. E., who is chief of Otolaryngology at Boston Medical (his predecessor had done the last three extractions). I liked him and his team immediately. He is thoughtful and conservative about performing a procedure that is either unnecessary or has low potential for success. In fact, he was at first reluctant to take me on, given how fragile the skin on my nose has become, but we came to a meeting of the minds, with a plan to do a skin graft if necessary to close the wound.

And that is what he and his resident did last Wednesday. I’d had to postpone the procedure twice over the summer, given unexpected schedule conflicts. During that delay the calcium had pushed through the skin, so I was managing an open wound and doing my best to avoid infection until we could finally take care of it.

Nonetheless, I was not looking forward to the procedure. Getting Lidocaine shots in your face is no picnic, and neither is having the bridge of your nose cut open and calcium deposits scraped out of bone. Then there was the added complication of the skin graft, which they took from below my left ear. And sewing me back together.

I’ve learned from past experience that I do not do well with Lidocaine mixed with epinephrine, which is a preferred concoction because it limits bleeding. So, instead, with plain Lidocaine they had to use a cauterizer, which, even with local anesthesia, feels like pins and needles, and sometimes like tiny darts. And it smells like burnt roast, which is, of course, essentially what’s happening.

This all took over an hour. I did my best to keep breathing evenly through the process. Some music from the High Holidays was a welcome ear worm. In addition to suturing the graft, they stitched a rectangular piece of gauze, called a “bumper,” on top of the graft to hold it in place for a week. That comes off, I sincerely hope, tomorrow. Between the stitches under my left ear and the bumper, I looked a bit like Frankenstein’s monster when they let me see my face in a mirror.

“Can I have something to cover it?” I asked.

“What did you have in mind?” asked the resident.

“A bandage?” It seemed rather obvious. His concern was that it not pull at the bumper to dislodge it in any way, but there was no way I was going to walk around with a piece of bloody gauze stitched to my nose for a week. So he found a light blue bandage, which I later replaced with one of my good cloth bandages, and I have been carefully tending it since. I also started antibiotics the day of the procedure to avoid infection. Pain has been easily managed with OTC meds.

So, this has been the every-few-years routine. Except, Dr. E told me when he finished, there’s not a lot of bone left where the calcinosis has repeatedly invaded. He was clear that this is the last time he would do such an extraction. If it grows back, which it most likely will, then we’re talking rhinoplasty. “Well,” I quipped, “at least I have a lot of nose to work with.”

And that is where I find myself after Extraction #5. It’s a lot to process. If the calcinosis re-emerges in a year or so, I may not wait until it begins to form a noticeable bump to undertake the inevitable. I’ll be 70 next April, and if I need major nose surgery, it’s better to do it sooner than later. In the meantime, I’m glad this round is done. And the immediate benefit: I can breathe better.

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: Anne Nygård

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Filed Under: Body, Mind, Smell, Touch Tagged With: body image, calcinosis, COVID-19, managing chronic disease, mindfulness, resilience

First in Line

Evelyn Herwitz · September 26, 2023 · Leave a Comment

I got my new Covid shot a week ago, as soon as it was available. Glad to have that out of the way. It seems that the wily virus is popping up everywhere, once again disrupting lives, albeit with less serious risks for most, thanks to progress with vaccines and a build-up of natural immunity.

Just one way Covid has caused disruptions, of late: I sing in a quintet at my synagogue for the Jewish High Holy Days. Just before Rosh Hashanah the weekend before last, the wife of one of our tenors tested positive, so he could not sing with us out of an abundance of caution and consideration for others. Then this past week another member, who also sings tenor and was covering for the first tenor, was exposed to Covid while traveling, so we were scrambling to figure out who could sing which solos and harmony.

Fortunately, our game of musical chairs resolved over the weekend. The first tenor’s wife is better and he never tested positive, and the other tenor remains negative and symptom free. So both could join us in song for Yom Kippur, although the second tenor wore a mask to be extra safe.

So it goes in this post-pandemic time, when we all wish Covid was behind us, but it still lurks. I got the Pfizer vaccine, since I’ve had rashes and aches from Moderna. While my arm was a little sore for a couple of days and I felt very tired by day’s end, that was it for side effects. A small price to pay for protection.

Next up, getting a flu shot in early October, and then I’ll get the RSV vaccine. I take them one at a time, to avoid a pile-on of side effects. Not so for Al, who got his Covid, flu, and second shingles vax all on one day last week and never felt the worse for wear. I admit, I’m jealous.

However you go about it, Dear Reader, I hope you take heed and get your Covid vax as soon as possible, if your medical condition allows—for your own well-being, and for that of those around you. While the worst Covid outcomes are limited by antiviral medications like Paxlovid, the risks of long Covid remain real and serious, and increase with repeated infections and lack of vaccination. 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: Tim Mossholder

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Filed Under: Body, Mind, Touch Tagged With: COVID-19, managing chronic disease, resilience

Moving On

Evelyn Herwitz · May 23, 2023 · 2 Comments

The last time I had a doctor’s appointment, I went without a mask. It was a few days after the Covid public health emergency was lifted in May, and masking in medical settings was no longer required. This felt strange, but liberating. I asked the medical assistant who took my vital signs how it felt to her. After three years of having to mask for work, she said, it was both odd and freeing. She found herself feeling for her mask to be sure it was in place and realizing it wasn’t there.

Don’t get me wrong. I think that masking has been an essential step toward reducing the spread of Covid and has helped to save lives. I’m sure it also kept me safer from other viruses. But I’m glad that we’ve moved on to be able to choose safely, for ourselves and others, when to mask and when it’s no longer necessary. So far, I’ve stayed healthy (knock on wood) despite not masking in a medical setting. I stopped masking in restaurants months ago, and in stores, and even on a long flight home from Germany in March, and still stayed well. Thank goodness.

I also got my second co-valent booster the first week it became available again for seniors. So that certainly helps give me an extra layer of invisible protection. And I remain meticulous about using hand sanitizer after touching public door handles, touch screens at check-out counters, elevator buttons, and using public restrooms. I did that before the pandemic, and I have never stopped. That’s just common sense.

Recently I noticed that Covid is no longer necessarily spelled with a capital C in news stories. I’m not sure if this coincided with the end of the public health emergency. It looks a bit odd, and I’m not quite yet ready to adopt that transition in my own writing. The virus has a long shadow. But perhaps this is just one more way that the pandemic has become endemic, like influenza, which is never capitalized and even has its own nickname, flu.

Covid is actually an abbreviation, already, of its full descriptor, corona virus disease. During the worst of the pandemic, I’d seen it shortened to ‘rona’ in casual texts and social media posts. Someday, perhaps, we’ll check off the annual rona shot on our fall medical to-do lists, along with flu shots.

Whatever you call it and however you spell it, all I can say is, to the best of our knowledge, thank goodness this very long, dark chapter has come to a close. As Dr. Sanjay Gupta wrote recently, while we still need to remain vigilant, now is the time to apply the hard lessons of the past three years, stay home when sick, be proactive about our health, and invest in staying well and living healthfully.

Stay safe out there.

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: Vera Davidova

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Filed Under: Body, Mind Tagged With: anxiety, body-mind balance, COVID-19, managing chronic disease, mindfulness, resilience

To Mask or Not to Mask

Evelyn Herwitz · April 4, 2023 · 2 Comments

Ten days out from my trip to Germany, and I’m feeling fine, thank you. This, despite the fact that I stopped wearing my mask about halfway through the trip, except when on a crowded, stuffy bus or subway. I did not even wear my mask on the eight-hour flight home. I was sitting way in the back, no one around me or even up ahead was sneezing or coughing, and—most relevant—the air in commercial airplanes gets exchanged every two to three minutes, so risks of getting a respiratory virus are actually lower than in a restaurant. (This New York Times article from 2021 gives a helpful visual explanation.)

This is not to say that I was careless. On my flight to Germany, I wore my mask most of the time, to be sure I didn’t kibosh the trip. I also wore it in the airport when in a crowd and in other busy public transit terminals. The key determinant for me was always how many others were around without masks, if they were sneezing or coughing, and if fresh air was in the mix. On commuter rail, for example, when the doors opened every few minutes to let someone on or off, I felt safe without the mask.

I also did a lot of walking during my travels, between four to six miles a day. So, plenty of fresh air and exercise, plus a healthy diet and sound sleep, once I adjusted to the new time zone, all helped me to stay well. (I must also note that my feet were significantly helped by a new discovery, Orthofeet shoes, which are very well designed, comfortable, and not clunky, despite the brand name. Definitely made it possible to go farther than I expected.)

Since I’ve been home, I’ve tried to keep up with daily walks and physical activity. It’s taken much of the past week for my body to fully adjust back to DST here, but I have definitely been catching up on my sleep, at last.

As to masks at home, I’m following the same principles as I did on my trip. I’m keeping up with all of my vaccinations, always carrying hand sanitizer with me and using it whenever I use a touch pad or grab a door handle. (Actually, this has been my practice for years, given my propensity for ulcer infections on my fingers). If I’m in a crowded, enclosed space or around people who are coughing or sneezing, I always have a mask on hand, and if I’m not feeling well, I stay home. I still have a stash of Covid tests, and I’ll certainly test if asked before attending a get-together. But for the most part, thanks to vaccines and good public health practice, I feel safe going maskless most of the time.

That said, I also fully respect anyone’s decision to wear a mask, for their own safety, and I will wear one if someone asks me to, in order to help them feel safe.

Here’s hoping that Covid truly has morphed to an endemic state, and masking becomes merely a matter of personal choice, even for those of us whose immune systems need more tending.

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: cottonbro studio

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Filed Under: Body, Mind, Touch Tagged With: COVID-19, managing chronic disease, resilience, travel

Getting a Boost

Evelyn Herwitz · October 25, 2022 · 4 Comments

I got my Covid bivalent booster vaccination last Thursday—Pfizer this time, as opposed to Moderna up until now. I scheduled the shot for mid-afternoon, knowing I could set aside Thursday evening and Friday for down time if I got sick, as expected from past experience.

While I did get draggy and had some achy joints, I was very pleasantly surprised that, this time, the aftermath was not debilitating. No rash at the injection site. No real brain fog (other than my normal age-and-scleroderma baseline). I was able to sleep through the night. I modified my morning exercises to accommodate my sore left arm, but otherwise went about my day, editing a blog for a client, writing more in Novel 2. It was only by late Friday afternoon and evening that I ran out of energy. But by Saturday morning, most of the aches were gone.

I don’t know if this is because I went with Pfizer. From what I’ve read, the two versions are effectively equivalent and highly successful in reducing risk of severe disease from both earlier Covid variants and Omicron BA.5. Maybe there has been something in the Moderna vaccine chemistry that wallops me. In any case, the FDA says it’s fine to mix-and-match the vaccines, so I decided to try Pfizer and see if I could tolerate it better. That seems to be the case.

I chose not to pair the booster with my annual flu shot, because I wanted to get over whatever side effects I’d have from the former before adding in the latter. Now that I’m over 65, I get the super-duper flu shot (a friend called it “the old geezer shot”), and I need to pace myself. So that’s scheduled for this coming Thursday.

Fortunately, it is super easy to get vaccinated. Both shots are free and readily available at many local pharmacies. One piece of advice: don’t count on a walk-in. I thought that would be possible, given all the reports that there has been no run on the bivalent booster, but found out when I arrived without an appointment at my local CVS that I definitely needed one. The online appointment scheduling is simple and takes only about five minutes.

I hope your experience with the bivalent booster goes well. Please don’t wait. Flu season is upon us here in the Northeast, already intensifying in the southern U.S., and new, wily Omicron variants have also hit our shores. We have the tools and a lot more experience than we did two-and-a-half years ago.

Stay safe out there.

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: Vinzenz Lorenz M

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Filed Under: Body, Mind, Touch Tagged With: body-mind balance, COVID-19, managing chronic disease, medication side effects, resilience, vaccines

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About the Writer

When not writing about living fully with chronic health challenges, Evelyn Herwitz helps her marketing clients tell great stories about their good works. She would love to win a MacArthur grant and write fiction all day. Read More…

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I am not a doctor . . .

. . . and don’t play one on TV. While I strive for accuracy based on my 40-plus years of living with scleroderma, none of what I write should be taken as medical advice for your specific condition.

Scleroderma manifests uniquely in each individual. Please seek expert medical care. You’ll find websites with links to medical professionals in Resources.

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