Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

COVID-19

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.

And So It Goes

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I was planning to write an upbeat post today, in anticipation of my 70th birthday on Thursday. But life has a way of throwing curve balls. On Sunday, we discovered that Al has Covid. So far, he seems to be doing okay, and we expect a green light for him to start a course of Paxlovid. The last time he had Covid, nearly two years ago, it worked well for him. But he still has to lay low. So our dinner plans for Thursday night are postponed.

So far, I’m doing fine, no symptoms and testing negative. I sincerely hope that I don’t get Covid for my birthday. I also hope we are both are in the clear for hosting family for next week’s Passover seders.

I was texting with our older daughter on Sunday, who was very sympathetic about the bad timing of all this, and I remarked that turning 70 is all about taking this kind of downturn in stride—even as I was pretty frustrated when I saw Al’s positive test result that morning. As she rightly noted, a birthday is just one day, but “you can be celebrated all the days!” Very true.

For weeks I had been debating whether to get the recommended spring Covid booster. I had discussed this with both of my rheumatologists, at home and at Boston Medical, as well as with our geriatrics nurse practitioner. All had been ambivalent. The issue is that the spring booster is the same vaccine as last fall’s, although the prevalent Covid strains have evolved. While it’s possible that the booster could help dampen the impact of those new strains, it’s not conclusive that it would make a difference.

Had I gotten the booster, would I be at less risk for getting Covid for my birthday? I’ll never know. However, given my exposure, whether I catch the virus or not, I will build up some more immunity from the current strain. So I guess that’s a plus. But one I could do without.

Fortunately, even before Al got sick, we had decided to schedule an overnight trip to New York City to celebrate my birthday in early May. My original idea, to go this week, would have been too much, too near to Passover, which involves a lot of cleaning and preparation. Now it would have been impossible.

And so, all I can do is wait and see. Getting upset won’t change anything. I’ll make the best of my 70th birthday, regardless, and we’ll celebrate together when we’re both well. Lessons learned from seven decades.

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: Simon Hurry

In Stitches

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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

First in Line

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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

Moving On

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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