Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

COVID-19

Gotcha

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So, we were supposed to go on a 10-day vacation over the past week, at long last flying across borders to savor another culture. But Covid had other plans.

Three nights before we planned to leave, Al started coughing. Not your normal clear-the-throat cough, but a deeper, barking cough that woke me up a few times. Just to be on the safe side, the next morning I gave him a rapid test. The T line turned purple even before the C line emerged. Not good.

After I got over being upset (I was quite upset) I realized that we should just try to reschedule the trip. Which, by the end of the day, I had successfully done. I had purchased Covid travel insurance, and I am sending off a claim for the additional cost of the switched airline tickets this week. I don’t know if it will be honored, given that I didn’t actually cancel the flights, but it’s worth a shot.

Meanwhile, Al and I both had PCR tests. His came back positive the next day, and mine, negative. But by Friday, the day we were supposed to leave, I was starting to feel crummy. Two negative rapid tests were not much consolation. Sure enough, Saturday morning my rapid test was definitively positive.

This all happened despite our both being fully vaccinated and double boosted. As has been widely reported, the current dominant strain of Omicron, BA.5, is highly contagious and can evade some of the vaccines. We have no idea how Al picked it up. And even as we did our best to mask around each other and for Al to isolate, it didn’t matter. I still got it.

Fortunately, Paxlovid, the anti-viral medication for Covid that is provided at no charge by the federal government, is a game changer. It made a huge difference for both of us. There are reports of side-effects and also significant contraindications for certain medications. I had to stop two of my meds in order to take the five-day course. The only side effect that I was aware of was the bitter aftertaste it leaves in your mouth. But that is a very small price to pay for stopping Covid from replicating itself in my body.

Before Paxlovid, I was experiencing aches, chills, overactive Raynaud’s, a lot of congestion plus very runny nose, and a really sore throat (like severe strep, hard to swallow because it hurt so much). The day before I tested positive, I also experienced a sudden bout of vertigo, and until the Paxlovid took hold, migrating pins and needles, not unlike shingles. Oh, and my heart rate sped up and my arrhythmia kicked in. No fun.

Within 36 hours of starting the Paxlovid, all of this began to ease up. It felt miraculous. There is no doubt in my mind that if I hadn’t taken all the precautions of vaccines and boosters ahead of this, I would have been in much worse shape. And the Paxlovid really helped to turn things around. Risks of long Covid are real, especially when my immune system is already compromised from both scleroderma and Sjögren’s Syndrome. Even if I experience a Covid rebound (which can happen after stopping Paxlovid), I’m confident that another five days on Paxlovid is worth it, and quite manageable. So far, so good.

Happily, we are both on the mend. Fatigue is still a factor, but not as bad as previously. I tested negative with a rapid test eight days after my positive test. PCR results may remain positive for a while because they pick up fragments of the virus, even when you’re no longer really contagious.

In any case, I intend to wear my mask in public long after I need to (five days past the five-day isolation period) according to post-Covid protocol. Just to be careful. I do not want to get re-infected, especially in the weeks leading up to our rescheduled trip.

I hope you are well and free of all this. I am grateful for all the medical advances that enabled me and Al to get better relatively quickly and never get severely ill. Covid is not to be messed with. Stay 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: Gratisography

Airborne Again

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After 27 months of mostly staying put, I finally got on an airplane once again. And, just as I did in March 2020, right before Covid shut down the world, I flew to Philadelphia to see our younger daughter. We had been planning this visit for months, hoping that neither of us would contract the virus last minute and have to scuttle the trip. Thank goodness, we both tested negative on Thursday night, the evening before my Friday morning flight.

And so, I found myself back in the stressful world of air travel, with its crowds and TSA checks and worries about whether my flight would actually be on time or late or, at worst, cancelled due to lack of available aircraft or staff. Thank goodness, the weather held, the flight was on time, and I survived feeling squished in a cramped, worn-out seat. And yes, I wore a mask from the moment the shared van picked me up at home until I stepped out into the warm June morning and found my daughter, waiting for me in her car.

And we had a great visit. Photos below include some of the highlights: a walk through the Magic Garden of mosaics in South Philly, my first in-person view of the Liberty Bell, an abortion rights rally outside the National Constitution Center—one day after the Roe decision came down from SCOTUS—with Pennsylvania Attorney General Josh Shapiro (Democratic candidate in the crucial gubernatorial race this fall) and 1,500 citizens, a stroll down historic Elfreth’s Alley, and a brief but wonderful tour of Independence Hall and “the room where it happened”—debates over the Declaration of Independence, the Articles of Confederation, and what was to become the U.S. Constitution. Oh, and a lot of great meals.

Flying back on Sunday morning was a bit less smooth: my flight was delayed about 25 minutes because the co-pilot had to arrive from a separate flight, due to last minute staffing issues. Given all the SNAFUs that could have evolved from that one logistical issue, including a delayed arrival of the co-pilot leading to time-out issues for the rest of the crew (yes, this once happened to me), it was a relatively minor inconvenience. Overall, the trip was a home run.

How appropriate to visit Philadelphia at this critical inflection point in our nation’s history, how meaningful to be able to share it all with my younger daughter—and how great to feel like I can travel afar, relatively safely, once again.

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.

Venturing Out

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It’s been years since Al and I went to a wedding in the Before Times. This spring-summer-fall, we have four. The first was this past Sunday evening, the celebration of a young couple’s wedding that actually took place two years ago. After several postponements due to Covid, they had a reaffirmation of vows and a big bash at a country club, about an hour’s drive from our home.

The weather was hot, in the 90s, as thunderheads slowly filled the horizon. Despite one threatening rumble, however, the storm passed us by, the couple had a lovely outdoor ceremony and a romantic photo shoot, and we all moved on to the party indoors in a cavernous event space.

Now, Al and I had our K95 masks for the indoor bash, but the vast majority of guests went without. A few other older adults wore masks, so we didn’t feel completely alone, and even a couple of younger guests did, too. No one made any snide comments, thank goodness. Still, it was a bit awkward to be among the very few covering our noses and mouths, even as I was aware that the crowd included medical professionals and others who believed in vaccines.

At the same time, there was no way I was going to chance it maskless. We’re still in a pandemic, even if almost everyone wants to forget about it. I cannot take any undue risks, given my scleroderma, and neither can Al. Fortunately, we were seated at the back row of tables, and the only other couple at our table wore masks, as well. The rest of the place settings remained empty because, we later learned, those people had cancelled last minute due to medical risks and worries about the Omicron surge. The other couple never removed their masks, avoided the meal, and stayed only part-way through the party.

So we ended up with the best possible setting, by ourselves at a large round table, well distanced from others, while we ate. We danced a little, wearing masks, staying at the edge of the dance floor. And we left after dessert. We both enjoyed ourselves and were very glad that we could celebrate with the happy couple, family, and friends.

I’m hoping that we made the right decisions and have avoided exposure to the virus. So far, a day later, I feel fine, and so does Al. I don’t know when we’ll ever get back to “normal,” whatever that means now. I’m not ready to eat indoors at a restaurant, where we have no idea if others are even vaccinated and the space is more confined (with one exception back in April that worked out okay). I’m starting to plan some travel this summer that requires flights. I’m investigating travel insurance that covers sickness from Covid.

While the introvert in me has managed quite well, thank you, with limiting in-person socializing since March 2020, I now need to get out and about again—beyond just trips to the doctor, small family gatherings, short errands, or our synagogue, where I help to set our Covid policies and we have strict vaccination and masking rules in place that have proven prudent. We’ve enjoyed some lovely, albeit limited, long weekend getaways, and my two writing retreats over the past two years have been godsends. But my world now just feels too small.

So, it’s time to venture forth. It’s time to not be cowed by what-ifs, while taking appropriate safety measures, regardless of what others are doing. Much as I hate wearing my mask, I will continue to do so when in crowds or other Covid-risky situations, both inside and out, as I go.

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: Marc A. Sporys

Eleventh Plague

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Last week was a roller coaster ride. It’s always a hectic time, preparing for Passover, what with all the cleaning and switching over our kitchen to our special Passover dishes and cooking, cooking, cooking. But this year, for the first time in three, we had planned to host the first seder on Friday night in person. Like so many families readying for the big holiday weekend, be it Passover, Easter, or the evening meals of Ramadan that coincide this year, we were really looking forward to, at last, celebrating together across a real table, rather than on Zoom.

Al had worked late in the kitchen on Tuesday, getting things ready so I could begin cooking the next morning. But when I came downstairs on Wednesday, he seemed weary and not himself. “Are you okay?” I asked. “I’m just tired,” he said. About an hour later, he was retching in the bathroom. My heart sank. I had recently learned that the Omicron BA.2 variant of Covid often presents with GI symptoms.

I sent him to bed, donned mask and gloves, and gave him a rapid test, which turned up negative. But I also knew that the rapid tests aren’t necessarily accurate in the first few days of symptoms with this variant. So I called our clinic and was able to get us in for PCR tests early that afternoon. They said we’d have results by the next day. I emailed our family that we were in a holding pattern for Friday night.

Al spiked a fever that afternoon and evening, but fortunately, he was fever-free by Thursday morning, not yet hungry, but able to eat a bland diet. I spent the rest of the day food shopping, cleaning, and cooking more food that evening. His condition continued to improve, but no PCR results. I emailed family that things were looking better, and we would confirm plans in the morning. I went to bed dog-tired.

Friday morning, still no PCR results, but Al was back to normal. We decided to green-light the seder, understanding that anyone who felt uneasy about coming should do what was best for them. All had to take rapid tests and have a negative result to attend. Our cousin’s husband, a physician, decided to stay home because he had been fighting a cold, which he told me with “97% certainty” was not Covid, but he went ahead and got a PCR test anyway, at his wife’s insistence. Finally, late morning, our PCR tests came back negative, a huge relief. Our daughters arrived late afternoon, and our other relatives that evening. I finished all my cooking just before everyone came. We had a wonderful seder together, and all felt so good to finally be able to share the meal and all the rituals in person.

Saturday morning, our physician cousin, whose family was hosting the second night, sent us all an email. He had tested positive. Now what? To my surprise, I did not freak out. There was nothing to be done. And I wasn’t going to spend the weekend fretting about the possibility of developing Covid symptoms. We ended up with just the four of us for the second seder. Our eldest returned to Boston that evening, and our younger daughter left for Philly the next morning. None of us have developed any symptoms, nor have our cousins who were exposed at home, who came here. Given that, if you’re infected, you can shed the virus 24-48 hours before becoming symptomatic (and most people do have symptoms), but all appeared to have spent the weekend symptom-free, we are most likely in the clear of a second-hand Covid infection.

A good thing, because Monday was my 68th birthday, and I really didn’t want the gift of Covid! I spent the day writing, which was wonderful.

So goes life in Covid times, which are not really over. Not yet. I hope you and yours enjoyed a lovely weekend, whatever holidays you may or may not celebrate. 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.

Re-Boost

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Thursday afternoon, as I awaited my podiatry appointment*, a young woman at the other end of the waiting room began to sneeze and sniffle. She wore a mask—below her nose. When the nurse came to check her temp before her appointment, she asked the young woman how she was feeling. “Fine, thanks,” the young woman replied. Yeah, right, I thought.

Maybe it was just allergies. Or maybe she was in denial. In any case, at least she was not seeing my doc, and she was in an exam room away from the one I was given a few minutes later. I kept my own mask on tight and reassured myself that I was getting my second Covid booster in a few hours.

Omicron BA.2 is way too contagious, and I’ve read far too many accounts of people getting a “mild” case that feels like being run over by a truck, so I jumped on the opportunity when another booster round was approved by the FDA for people 50 and over last week. I was hoping the side effects wouldn’t be too bad.

That proved true Thursday evening. By Friday morning, I just had a sore arm and “Moderna rash” where I got the shot. By midday, I started feeling achy and tired, but I was still able to get some work done. Then I needed to lie down. After a good nap and Tylenol, I began to feel better. By Saturday, I was pretty much back to normal, although the rash will still take a few days to clear. This has been my pattern with each vaccination.

A small price to pay for a better immune response to this clever, cruel virus. I’d much rather have a day or two of side effects than potential lung damage from Covid on top of my already scarred lungs from scleroderma. Given that I can’t control the safety precautions of those around me, I’m grateful that I have this way of taking care of myself and my family.

* As to my troublesome corn, my podiatrist said there was no way, most likely, to keep it from coming back, but after removing it, he ground down a spot on the underside of my foam insole to relieve pressure. So far, so good. I ordered my own version of this tool, which is actually the same as a toenail grinder for pets, so I can adjust my other insoles at home. Just need to put a little chalk on the corn, step barefoot on the insole to mark the spot, and grind a depression on the opposite side.

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: Nick Fewings