Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

On the Mend

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I am happy to report that our latest bout with Covid appears to be over. Al is feeling fine, and I am regaining my energy. Thank goodness for Paxlovid, which began to ease my chills, joint pain, headache, and congestion within 24 hours. It leaves a metallic taste, but who cares? Better that than to be really sick.

On top of this, I spiked an infection in my left thumb, which has perpetual ulcers. I tried unsuccessfully for at least a week to treat it with topical antibiotics, to no avail. I finally caved in and started Minocycline, which usually clears out digital ulcer infections within a week or two, and I’m relieved that it seems to be working, once again. Especially after one very bad night last week when the stabbing pain from the infection woke me around 2:30 in the morning and made it nearly impossible to get back to sleep.

So, on both counts, I’m grateful for my body’s ability to heal.

We weathered the tail of Hurricane Isaias over the weekend—just rain here. If you live along the Gulf Coast or in the southeast U.S. where the storm was most severe, I hope that your power has returned and that you and yours are safe and sound, too.

And so, the leaves are starting to turn here in Central Massachusetts, gold and orange and crimson, mixed with lingering green. Our lavender hydrangea has faded to dusty rose. The sun is shining as I write, peeking from behind fluffy clouds.

You never know what the day will bring. But this one is shaping up nicely, thank you very much. I’ll take it.

Be well, Dear Reader.

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.

One More Time

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Just when you think it’s safe to go out, here comes Covid, once again. Al wasn’t feeling well last week, but we both thought it was a cold settling in.

Not so. By Friday, he was exhausted and slept all afternoon. And by evening, he asked me to give him a Covid test. Usually I’m the one who insists that I test him.

And, of course, it was positive. This led to calls to our PCP for a Paxlovid prescription and a frantic search online for a voucher to bring the price down. List price, even with a Good Rx coupon, was over $1500. Fortunately, he qualified for Pfizer’s PAXCESS® program, which brings the price to zero.

A good thing for me, too, because I tested positive on Sunday. In my case, the pharmacy price of Paxlovid was $366, but the voucher again zeroed it out. Not sure I understand the price differential. It’s outrageous, in any case.

Two doses later, I’m already feeling better, thankfully. On Sunday I was feeling achey, with chills and a dry cough. As I write on late Monday afternoon, my head is mostly clear, and I can breathe normally. No aches or chills. Just tired. Pretty good for 24 hours. The only downside of Paxlovid is the metallic taste in your mouth. But I’ll take that over Covid symptoms.

Moral of the story: stock up on Covid tests, be careful out there, and be sure to get the voucher if you need Paxlovid. Here’s the link.

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: A.C.

After the Deluge

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It has been pouring rain here all weekend in an unusual early-fall Nor’easter. Lots of wind, especially along the coast. Fortunately, we’re an hour’s drive inland from Boston, so the impact wasn’t as severe here. On Nantucket, winds and surf were so intense that remains of an 1884 shipwreck washed ashore.

The storm arrived just in time for the Jewish holiday of Sukkot, an eight-day festival that follows the High Holidays. A special feature of the holiday is to erect a sukkah, which is an intentionally flimsy structure that has a roof made of plant material that enables you to see the stars at night. Al always cuts pine boughs for ours. One side of this rectangular “booth” is open, and the walls are made of fabric or tarps or other lightweight material.

You’re supposed to eat meals inside it, and some people even sleep in theirs. Sitting outside in the sukkah is like taking a camping trip in your back yard. The air is fresh and clean, and you still hear the crickets and other night critters this time of year in New England. It’s truly lovely.

But in a rain storm, not so lovely. We haven’t been able to eat outside yet. Al is waiting until the storm clears to decorate it with gourds.

Despite all the wind and rain, however, our sukkah is still standing. For many years, Al built and rebuilt our sukkah with old two-by-fours and sheets, but fortunately he finally agreed with me, after it nearly collapsed in the construction process last fall, that it was time to get a sukkah kit, which has a metal pole frame and, though impermanent, is a lot safer and easier to assemble. I used some bungee cords to anchor the bottom frame to the rail of our back deck. The pine boughs are drooping, saturated with water. But it’s all still there.

Nevertheless, the impermanence of the sukkah is the whole point. It’s a very tactile way to contemplate the impermanence of life and, for me, God’s protecting presence. We may think we have control in our safe, sturdy homes, with all of our belongings and tech gadgets and such, but the reality is that control is an illusion. Change is the only constant.

And so, this year, we’ve had to wait to spend time in our sukkah. Soon enough, Al will hang the gourds and we’ll enjoy eating inside it 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.

Upon Reflection

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It’s dreary and raining this Sunday afternoon. I’m writing now because Yom Kippur, the Day of Atonement and highest holiday in the Jewish calendar, starts this evening and goes through Monday, which is the day I normally write this blog. It’s a somber day that caps a period of self-reflection. We’re supposed to think about who we’ve wronged during the year and make amends. We’re supposed to ask hard questions: How can I do better, be better to my family, friends, my community, in my relationship with God?

I wish I felt better prepared. I haven’t been able to find time to think about all of this in advance. So tomorrow will be a crash review of the year and what I need to improve on.

I know a few things. I need to be more patient with those closest to me—and with myself. I cannot be or pretend to be Wonder Woman and do everything for everyone else who needs me. Sometimes it really is best to step back, even if my ego says I could/should step forward.

There’s more, much more, to contemplate. It seems like an onerous task, at first, but by sundown on Yom Kippur, I always actually feel clearer and lighter—not just from fasting, but from introspection.

And so, to all who observe this holiday, I hope you, too, had a meaningful day. Whatever your faith or beliefs, 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: Walter Walraven

No Clear Answers

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Back to another stretch of multiple doctor’s appointments. On Thursday I saw my rheumatologist at Boston Medical Center. I was back to BMC again for a visit to my GI specialist on Monday afternoon. Today it’s a drive to the South Shore to see my podiatrist. Then on Thursday, I go to the wound clinic at our local hospital to check in on my digital ulcers.

It’s a lot of appointments. It takes a lot of time to drive and wait and be seen. I have a great team. I just wish the visits were more spread out.

At Monday’s GI exam, we discussed all the diagnostic tests I’ve undergone in the past few months to figure out what’s going on with my gut. Turns out that I have normal motility in my small intestines, and the breath test for bacterial overgrowth thereof was negative, though it’s not the most reliable test.

Bottom line is that we don’t have any physiological evidence that there is excess bacteria in my gut due to slow movement of digested food through my intestine—which we had expected to find, a common problem in scleroderma, but apparently not my issue. So what is causing the chronic diarrhea?

We know that the gut microbiome is very important to overall health, my specialist explained, but there’s a lot we just don’t know. There are no definitive tests beyond what we’ve done to clarify what’s going on. So we’re down to trial and error. He offered me a free sample course of the very expensive antibiotic that I can’t afford, to see if it would help. But why do that if my gut is actually processing food with normal motility? So I asked him to recommend probiotics, and I’ll report back how that works.

And so it goes. I learn from my doctors, and they certainly learn from me. They are all well-versed in the research. But so much of what happens in scleroderma remains a mystery.

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: Bioscience Image Library by Fayette Reynolds