Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

The Allergy Factor

· · 1 Comment

It finally feels like spring here in Central Massachusetts . . . at least for a day. For the past week, all the flowering trees and shrubs in our neighborhood have bloomed, the maples are flowering, and the weeping cherries and Callery pears are already shedding petals, like so many pink and white snowflakes.

I always love the pastel colors of spring in the Northeast, but inevitably, all the pollen can do a number on my head. It used to be that I’d sneeze a lot and my eyes would water in response to the blossoming. This year, however, my spring allergies took a stealth turn.

Last May, as I’ve described here, I discovered scleral contact lenses to heal my very dry eyes, which were becoming more of an issue due to damage to my corneas from Sjogren’s. The lenses have helped a lot, although they’ve been harder to wear during the winter, when our house gets drier. But in recent weeks, I suddenly found that I could barely keep them in for a few hours, which evolved to only a few minutes last week.

As soon as I’d insert them, they would cloud over. Very frustrating. I wondered if my eyes were somehow rejecting them. Fortunately I was able to get an appointment last Thursday with the good folks at our local optometry college’s dry eye clinic. The students did their usual thorough intake. But when the supervising optometrist came into the exam room, the first thing he asked me was whether I had allergies.

Sure enough, that explained it. The build-up of histamines in my eyes combined with the fact that I can’t produce enough tears to dilute the resulting mucus caused a film to form on my scleral lenses. The answer so far is to try antihistamine eye-drops for about 10 days, and then try the lenses again. I’m glad to report that as soon as I started using the eye-drops, my eyes felt better and are no longer gucking up like they were before.

Hoping that I continue to make progress and can wear my lenses again. I’ll have to build up tolerance once more, but that’s certainly a manageable process. Meanwhile, the pollen mix is shifting. Maybe by the time I put in my lenses, the leaves will be fully unfurled.

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.

Eleventh Plague

· · 2 Comments

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.

Oasis of Calm

· · 1 Comment

Last week, I spent four days on Cape Cod by myself, just to focus on my own writing. It’s the second time in about a year that I’ve given myself this kind of mental and physical space to write. It was a wonderful, productive time, in a beautiful setting, surrounded by nature. I wrote and planned and walked nearby beaches of the Cape Cod National Seashore. Nothing like getting away from all the distractions and cacophony of bad news to reset my mind and soul, think about what really matters—and make my own art. Here’s a taste . . .

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

· · 2 Comments

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

Step-wise

· · 5 Comments

I see my podiatrist this week. It’s a good thing. Every couple of months, he rescues my feet from corns and tiny bits of calcium emerging from the tip of my right big toe. He also trims my toenails, which I can do for myself with a little difficulty, but still need help.

Scleroderma has caused the fat pads on my feet to recede significantly over the years, which makes it difficult to walk on hard surfaces. I really can’t go barefoot on our hardwood floors without discomfort. It feels like walking on bones. That lack of natural padding also makes corns more of an issue, especially when they form over joints.

Since last summer, I’ve been trying to manage a particularly annoying corn that keeps reforming over the metatarsal head of my fifth toe on the bottom of my left foot. Even with orthopedic foam inserts in my shoes—a necessity to cushion the impact of walking—I find myself rolling my left foot toward my instep, to avoid the feeling of stepping on a pebble. This places extra pressure on the metatarsal head under my big toe, which is also uncomfortable, and I end up walking with a slight limp and a rolling gate that aggravates other joints and my back.

It’s amazing how something so tiny can make it so much harder to get around. I find myself avoiding my neighborhood walks, lately, because of all this. And that means I get less aerobic exercise, and my weight starts creeping up again. If I don’t walk, I don’t sleep as well. And so on.

I’ve tried corn plasters and salicylic acid drops, which help a bit, but I can never fully extract the corn myself. Which is why I’m glad to be seeing my podiatrist this week. I’m hoping he can help me to figure out a way to keep the corn from reforming, although he’s told me recurring corns are a really common issue for his scleroderma patients.

My other possible solution is to cut away some of the foam in my left insert, essentially to make a little doughnut hole right where my corn touches it—kind of like a built-in corn cushion.

Living with scleroderma is, in some ways, a never-ending series of problems to be solved. Even after 40 years of managing this disease, it continues to surprise me. And so, my goal is to keep one step ahead, before the little stuff turns into something even more complicated and difficult to manage.

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: Christopher Burns