Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Hearing

Tunnel’s End

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On Saturday, May 29, Massachusetts lifted most of our pandemic restrictions. In celebration, the TD Garden was packed for the playoff game between the Boston Bruins and the New York Islanders—which the Bruins won handily, 5-2.

I am not an ice hockey fan, nor would I feel safe going to an indoor arena filled to capacity, regardless of the sport. Too big a risk, too soon, in too huge a crowd. Outdoors, however, for a baseball game in good weather at the new Minor League stadium in our fair city, yes. Looking forward to that sometime in the not-too-distant future.

A week past Al’s clearance from Covid quarantine (he caught a mild case despite being immunized), we’re both doing fine, thank goodness. And the fact that I never caught it from him, due to the vaccine, has definitely given me more confidence—enough to venture indoors to a restaurant with my daughters on Sunday for a belated Mother’s Day meal. Our eldest has been immunized for months, and our youngest was finally able to get both Moderna vaccinations from the university where she works near Philly. So she came for a long Memorial Day weekend, and the three of us had a ladies’ luncheon, their treat.

It was great to get together, and it was also great to sit in a restaurant without worrying about taking off my mask. The place was busy, plenty of people, but still some spacing between tables. We sat near glass doors that did not close completely, so we also had a source of fresh air.

What surprised me was how close to normal it seemed. The waitstaff were still in masks and gloves, which I appreciated. But otherwise it felt like it’s always felt to eat out. Our focus was on the food and conversation, not on any worries about safety. I will be thrilled to put my mask collection away sometime over the summer, when the data confirms the wisdom of eased restrictions, as cases and deaths continue to decline with increased vaccination rates.

Al’s situation going forward is a bit uncertain, however. Given that his immune system is somewhat compromised, we need medical guidance about when/if it would be truly safe for him to go unmasked in crowds. Does the fact that he caught mild Covid and recovered after being fully immunized actually add to his protection? Or does it all depend on the variants that are still evolving? We don’t know, but I hope to get answers soon.

Our experience over the past couple of weeks is just one small example of how vigilance remains essential for those at greater risk, even as the light at the tunnel’s end is now visible. Memorial Day commemorates fallen soldiers, but we’d also do well to remember the 594 thousand Americans who have died from Covid since the pandemic began over a year ago. That’s more than the total number of soldiers who died in World War I, World War II and Vietnam, and on 9/11. And there are still people hospitalized and dying from this terrible disease.

As we venture out of our Covid cocoons, even as we revel in unmasked spaces, I profoundly hope and pray that the majority of my fellow citizens have learned to be more thoughtful about the health and well-being of others still at risk. Please get the vaccine if you are able and have not already, so that this very dark chapter can finally close and we can all, at last, safely move forward.

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: Robert Bye

This Is a Test

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Last week, our home became a testing ground for the efficacy of Covid vaccines. Al was vaccinated back in February, and I was fully immunized by the first week of April. He got Pfizer, and I got Moderna. We’ve been feeling quite confident and relieved since then, although we both still mask in public, as required.

However, for much of April and May, Al has been coughing. At first, I thought it was just a morning thing, but right after Mother’s Day, his cough got worse. By the next weekend, he was clearly not feeling well. No fever, but I suspected bronchitis. So a week ago Monday, he went to the doctor. Sure enough, he had Covid. While he could walk outside and even ride his bike if he wanted, he could not be around other people (except me) and had to work from home.

I, in turn, had a Covid test the day after Al was diagnosed, and was—thank goodness—negative. I took over all the grocery shopping, errands, and meal prep, which we usually share. I’ve felt fine the whole time.

Fortunately, his symptoms steadily improved. He never lost his sense of smell or taste. As all the research has shown so far, the vaccine most likely spared him from a severe case of the virus. By the end of the week, he was hardly coughing at all, and yesterday, he was cleared to be out of self-quarantine.

He was called twice by the Massachusetts Covid contact tracing team, to see how he was doing. We had already notified everyone we had been in contact with in the recent past. But I was impressed by their follow-up and grateful that we have a good system in place here.

So, how is it that Al caught the virus, even though he was fully immunized? Chances are because he doesn’t have a spleen, which is a critical organ in the body’s immune system. Years ago, when we were first married, he contracted a severe case of mononucleosis—not a terribly big deal for young people, but quite a big deal for a 35-year-old man. His spleen ruptured and had to be surgically removed. He came home from the hospital the day before our first wedding anniversary.

While bone marrow compensates for the spleen in a case like Al’s, I am making an educated guess (no research at present to define the relationship between lack of a spleen and Covid vaccine efficacy) that he probably has not been able to produce the full level of antibodies in response to the vaccine. However, current research does indicate that even in breakthrough cases like Al’s, he both had a milder case and also shed less of the virus because he was fully vaccinated. And apparently, my vaccinations have given me enough protection for whatever I was exposed to. Thank God.

I shudder to think what might have happened if he had be infected before being vaccinated. He is more vulnerable than either of us realized. Which also goes to demonstrate how effective masking and basic public health measures are in protecting us all.

Moral of the story: Vaccines do work, even if not perfectly. We dodged a big bullet. And I am very grateful that we’re both okay, as well as others we saw recently. If you haven’t been vaccinated yet, please—for you own sake and those you love—go get it. And be sure to exercise caution around others who may have compromised immune systems, regardless of your immunization status. We truly are still all in this together.

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: Mufid Majnun

Nosebleed Section

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There are many aspects of last week’s writing retreat in Maine that were wonderful: intense focus on my novel, no-one to answer to but myself, beautiful beaches to walk nearby, quiet. I made real progress and hit all my revision goals. There is still work to do, but in four-and-half concentrated days, I accomplished what would have probably taken me two months. By the time I left my little rented cottage on Friday morning, my brain was fried, but I was elated.

That is not to say, however, that the trip was free of interruptions. There was the SNAFU with non-functional WIFI for two days, which turned out to be mostly Spectrum’s fault. (Fortunately I had downloaded my manuscript from the cloud prior to leaving.) There was also the delivery of a new stove and refrigerator, which had been delayed by the pandemic. There was the owner’s angst over grease stains on the new kitchen rug, due to the aforementioned delivery. My experience writing in a news room decades ago came in handy, and I was able to ignore the commotion in the kitchen and still write while all that mishegas was going on.

Then there was the nosebleed. From time to time, because my nose is quite dry due to Sjogren’s Syndrome, which can often accompany scleroderma, I experience nasty nosebleeds. I’m careful with saline sprays and rinses to help keep my nasal passages moisturized. But it can get the better of me. The weekend before I left, I had a gusher on Sunday that took at least a half-hour to bring under control. Then, the Saturday before I left, I had another spontaneous nosebleed from the back of my nose, which took at least 45 minutes to stop.

Worried about the trip, I called my clinic to see if I should go to urgent care for an exam. The nurse took copious notes and checked with the covering physician, who said there was no point in being seen, since the bleeding had stopped, but to be sure to keep my nostrils moisturized. He said to beware of saline, which can also be drying (this I’ve also learned from experience), but added a tip: use a small amount of Vaseline inside each nostril. This sounded rather odd to me. I thought it might affect my breathing or sense of smell. But I decided to try it out.

To my amazement, the thin coating actually felt good. As I packed the next morning, I made sure to have my new little jar of Vaseline, plenty of cotton swabs and tissues, plus cotton balls and decongestant spray if I had another bad bleed. I was relieved to drive all the way to Maine, unpack, shop for food, and make supper without incident.

Just as I was doing my dishes, however, I suddenly felt the bleeding start again in the back of my right nostril. Though not quite as bad as the previous day, which involved both sides, it once again took at least 45 minutes to control. I was not happy. After calling Al to discuss options, and calling my clinic after hours, I was able to speak once again to a nurse who said if it happened overnight, I’d need to go to the nearest ER (15 minutes away in Portland). If I had another bleed in the day, I should go to urgent care. And when I got home, I should call my doc for an ENT referral.

I called Al back and told him I was going to power through this. “No way I’m going to let a f-ing nosebleed stop me from doing this after thinking about it for years and finally getting here!” I said. Thank goodness, the combination of Vaseline and sea air seemed to do the trick. Eight days later as I write, even in drier air back home, I haven’t had another episode.

And here’s the thing: I’ve had Sjogren’s for decades. I’ve seen ENTs before. I’ve dealt with many nosebleeds. No one ever told me about the Vaseline. If you have the same problem, I hope it helps.

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.

Gone Writin’

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For six-and-a-half years, I’ve been working on my novel set in World War I. And this year, I finally carved out five days to sequester myself near the shore and focus on what is now the eighth round of revisions. Here’s the view a short walk from my little Maine cottage.

More next week. I hope you all are pursuing your dreams, too. It’s never too late . . .

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.

The Things We Take for Granted

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I updated my computer on Monday. That is to say, I transferred data from my six-year-old iMac to my new iMac, so that I could give my old iMac to Al, because my really old iMac that he was using for several years finally up and died. It was time for an upgrade, anyway, and so I made the business investment. I’ve favored Apple computers for more than a decade, now, not only because they’re so intuitive, but also because the keyboard is very easy on my hands. Any other computer keyboard feels like I’m banging on an old manual typewriter—that is to say, painful.

Things did not go smoothly. Following Apple’s instructions, I updated the operating system on my old iMac to the latest version before trying to transfer data between the two machines. But the new iMac, to my surprise and annoyance, did not have the latest OS version. So I had to first update the new iMac.

Issues arose, so I spoke with a very patient Apple tech support guy for at least an hour, trying to get the two machines to speak to each other. At last, the data transfer began successfully. Expecting it to complete overnight, I went upstairs to bed. Shortly after I woke up Monday morning, I checked progress. My old iMac had shut down 12 minutes before the multi-hour transfer process had completed. Back to Square One.

And so, I started the process all over again, with more Apple tech support. My biggest issue, other than tossing my entire morning out the window, was that I had to run a Zoom meeting at noon, and the estimated time for the data migration to complete was about five hours.

My only other option to run the meeting was my aging MacBook Air, which has not worked properly for at least a year because its memory is clogged up (hmmm, sounds familiar). So I asked the tech gal for help with that. She ended up handing me off to one of their senior tech gals, who spent another hour with me trying to free up memory. We never could figure out the basic issue, but I was able to meet my Zoom deadline.

I have to say that Apple support guys and gals are great. Knowledgeable, patient, and really try to help you solve the problems. A good thing, because the next issue arose when I tried to print from my now up-and-running new iMac, and my printer wouldn’t respond. Searching for info about the printer, whether it needed a new printer driver, etc., etc., only confused me more. So I called Apple support once again.

This time, after checking all the obvious stuff (so I thought), the tech support gal asked me if my printer was on the same wireless network as my iMac. Lo and behold, the WIFI had disconnected when I had unplugged the printer and plugged it back in, in the process of prior finagling with all the plugs and wires involved in the data transfer. I was able reconnect the printer to the WIFI and . . . it worked!

So, other than some more annoying app housecleaning, I am now writing on my new iMac with pleasure. And here comes the obvious conclusion: We’re so dependent on our computers. They are amazing tools when they work as intended. They are utterly frustrating when they don’t. If I’d been smarter, I would have set aside an entire day to make this transition, knowing that something would inevitably go wrong.

But these are problems that come with the privilege of being able to afford a top quality desktop computer—even as it’s essential to my work as a writer. I recognize this. I’m very grateful that I can do this. And I hope I won’t need to do it again for at least another six years.

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: Wilhelm Gunkel