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Reflections on the Messy Complexity of Chronicity

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Taste

Nosebleed Section

Evelyn Herwitz · May 11, 2021 · 1 Comment

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.

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Filed Under: Body, Hearing, Mind, Sight, Smell, Taste, Touch Tagged With: body-mind balance, managing chronic disease, resilience, Sjogren's syndrome, travel, vacation

Prepping

Evelyn Herwitz · March 23, 2021 · Leave a Comment

Today I get my second Moderna dose. On Monday, I tried to remember to keep drinking fluids, which is supposed to ease side effects. We shall see.

I’ve also been prepping for the aftermath. Friends and family who’ve had the Moderna vaccine report a whole range of reactions, from some arm pain to brain fog to extreme fatigue to headaches to fever, lasting a day or so. I’ve cleared my calendar for Wednesday, hoping for the best but leaving space and time to deal with a stronger reaction. After my first dose, I was very tired for several hours after I drove home from Boston. We shall see.

Then there’s Passover prep. The first seder is Saturday night this year, and there’s still a lot to do between now and then. We’ve started our house cleaning, shopped for dry goods and dairy foods, and planned menus for the week of Passover. Al will finish the bulk of the cleaning this week and the rest of the shopping for perishables, but I still have client work pending and other to-dos to complete.

I’ve revised the Haggadah that I wrote last year, and we’re getting organized to have a Zoom mini seder with family on the first night. But there is still more cleaning and all the cooking to do. So I’m hoping that my second dose won’t throw a monkey wrench into the works. We shall see.

How is this week before Passover different from all other weeks before Passover? We shall see.

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: Aron Visuals

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Filed Under: Body, Hearing, Mind, Sight, Smell, Taste, Touch Tagged With: body-mind balance, COVID-19, managing chronic disease, mindfulness, resilience

Thankfully

Evelyn Herwitz · December 1, 2020 · 1 Comment

Thanksgiving last Thursday was for us, as for so many, a shadow of celebrations past. But it was still lovely and meaningful, in its own way. Our eldest daughter, who also lives here in Massachusetts, was able to join us, even as our youngest had to stay at home out-of-state. Still, we enjoyed an extended family Zoom and watching a movie together-while-apart in the evening. No substitute for in-person, but I’m grateful that we all stayed safe. I cooked a vegetarian, gluten-free feast, with sous chef assistance from our daughter, including this excellent recipe from The New York Times for “Roasted Cauliflower Gratin with Tomatoes and Goat Cheese,” which I highly recommend.

The Times on Thanksgiving also featured a wonderful compilation of reader contributions of six-word gratitudes. Here are ten of my own:

COVID-19 vaccines: Light at tunnel’s end.

All still Corona-free. Knock on wood.

Okay, otherwise, with no digital infections.

Supermarket cashiers risking health for us.

Ample food. Loving family. Roof overhead.

Longer days in just three weeks.

Virtual, imperfect, but meaningful Zoom togetherness.

Good neighbors who wave behind masks.

Local election officials who defend democracy.

You, Dear Reader, for being here.

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: Adam Nieścioruk

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

Respite

Evelyn Herwitz · November 10, 2020 · 1 Comment

To say this past week has been intense and stressful would be a vast understatement. We have a new President-Elect, but the months between now and Inauguration Day on January 20, 2021, promise to be a rocky ride. So, as a public service, I offer you some soothing images of our escape to Cape Cod over the weekend. Visiting the ocean and environs always calms my nerves. Hope this virtual visit does the same for you. Enjoy . . .

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.

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Filed Under: Body, Hearing, Mind, Sight, Smell, Taste, Touch Tagged With: managing chronic disease, mindfulness, resilience, travel, vacation

Dress Rehearsal

Evelyn Herwitz · October 13, 2020 · 1 Comment

Last week, we had a Covid scare. Al woke up early Tuesday morning, sick to his stomach, with a fever. This is highly unusual for him. At any other time, I would have just assumed he’d caught a GI bug, but given that COVID-19 can occasionally present with these symptoms, we immediately went on high alert.

I spoke to our clinic twice that morning and was basically advised to have him isolate, hydrate, and take Tylenol to control his fever, which had gone up to 101.1. We have a pulse oximeter that I’d purchased months ago, just in case one of us had Covid symptoms, and I had him check his oxygenation level, which was fine at 98 percent.

I spent the next few hours trying not to freak out. I tried to concentrate on how he was doing as well as my work. A planned Zoom call with one of my clients, who is also a longtime friend, helped me regain some perspective. I dug into my writing, which is a meditation for me. By afternoon, Al was doing better, able to make arrangements for coverage for his social work responsibilities, and his temperature had settled around 99. He was able to drink fluids. And he slept.

But I would be lying if I didn’t admit I was really scared. Both of us are over 65, with health issues that put us at risk for serious Covid complications. I tried to schedule Covid tests for that day, but couldn’t get anything until Wednesday morning. So, like millions of other Americans finding themselves in this terrifying dilemma, we had to just sit tight and wait to see what happened.

By bedtime, Al was looking and feeling a bit better, able to eat a few rice cakes. (I’m a strong believer in the BRAT diet for stomach distress—bananas, rice, applesauce, tea/toast—with rice always the first step.) Just as he was settling down in a separate bedroom, and I was ready to go to bed, I suddenly remembered that the nurse had told me to monitor his oxygenation level. If it dropped below 95, I was supposed to let them know.

So I gave Al the meter for him to measure his levels. I was being very careful not to come into his room, per all the CDC guidelines. Three times he measured his levels with the finger-clip meter on three different fingers, and each time, it came back 88. How could his levels have dropped ten points with no sign of respiratory distress? But I knew this is one of the hallmarks of Covid: your lungs can be overworking before you actually sense it, which is why these readings at home are so important.

After a long discussion with the clinic, I was advised to bring him to the ER. We arrived at Midnight, but, of course, I could not go with him. He texted me as soon as I walked in the house that he was already in a room, and that his pulse/ox was 96 percent. So, obviously our meter was off. I was very relieved, though still confused.

Three hours later, after he’d had a clear lung Xray and other negative lab work, plus a Covid test (results in 48 hours), plus IVs and potassium to replace his lost fluids from the morning, I picked him up and brought him home. His ER doctor did not suspect Covid, which was also a relief. We both went to bed.

A few hours later, I got up and went to a nearby clinic for my own Covid test, just to be on the safe side. It was much easier than expected, a well-organized drive-through tent, and only the base of my nostrils were swabbed, no dreaded brain scrape. Throughout the rest of the day, Al continued to improve, and by evening, his temp was normal.

On Thursday afternoon, we both got our test results back: Negative. Hallelujah!

And what of the mysterious 88 pulse-ox reading? I realized, on Wednesday, that 88 is the default reading on the meter when it’s on but can’t register a measurement. Sure enough, the rubber pad inside the finger clamp had come off, so the meter had broken. If I’d taken the reading myself for Al, I would have known. But at that late hour on the first day, I was way too exhausted to think clearly and figure that out.

In any case, I’m glad he was seen that night, inconvenient as it was, because we found out his lungs were fine. Here’s hoping the copay isn’t outrageous.

Of the many lessons learned, here are my takeaways:

  • There are plenty of viruses out there that are not Covid. We have to be extra vigilant, but each sneeze, cough, or upset stomach may just be routine, rather than exotic and deadly. The biggest red flag last week was Al’s fever. As hours passed, the fact that his temp went down and his appetite returned was a good indication that all he had was a run-of-the-mill virus.
  • I need to get a better pulse oximeter and, if needed, read the results myself if Al is sick.
  • It will take extreme precautions, if one of us gets Covid, God forbid, for the other to be the caretaker and not get sick. I never got Al’s stomach bug, thank goodness, so I must have been doing something right. But there are so many touch points to avoid, so many tiny details to be aware of—how do I wash his dishes v mine? how often should I change gloves? can I safely clean up after him when he’s sick and not contaminate myself without wearing PPE?—that in a house our size, not small, but not huge, either, it will be a real challenge. (All the more so for those who live with multiple family members in small apartments. The whole situation infuriates me, but that’s another post for another time.)
  • It is all the more important for both of us to be extra careful with masks and hand hygiene when out in public. I don’t want to have to go through this for real.
  • I’m very grateful to have Medicare and Medex coverage, and to live in Massachusetts, where we have aggressive contact tracing and plenty of free Covid testing sites. We were told we’d get results in a few days, but actually, we both heard in under 36 hours.

Bottom line: we dodged the bullet. Here’s hoping this was only a dress rehearsal for a play that will never open. Stay well, all.

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: Gwen O

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

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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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