Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

body-mind balance

I Just Want to Sleep

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I’m going through one of those phases when I’m not sleeping soundly every night. Too much going on in the world and at home, too many demands on my mental and emotional energy. Usually I can hit the pillow and just drop off, maybe getting up once during the night for a trip to the bathroom, then back to sleep. Not so at the moment, and it’s just so annoying.

I listen to guided meditation and sleepcasts. I’ve recently tried listening to brown noise in my mediation app. According to the Cleveland Clinic, this is low frequency sound, like distant thunder, waterfalls, or heavy rain. The version I have sounds like a low rumbling and is surprisingly soothing. If I’m stressed and my blood pressure is up, this background noise seems to quell my heart rate. I’ve also tried a form of ocean breathing, which is calming.

But sometimes my brain just keeps on whirring. Counting backwards from 100 and starting over when I miss a number works occasionally to nudge me off my train of thought. So does naming all the state capitals (yes, I’m a nerd). Or free-associating with nouns starting with the same letter.

Sunday night, however, I just gave up. I went to bed early because I was really tired and also thrown off by the switch back to standard time. I woke up after only two hours of sleep. It wasn’t even midnight, yet. Aargh! I went through my whole routine and nothing worked. So I caved and took a Benadryl, despite no rash or other allergic reaction. It knocked me out, thank goodness, but it always leaves me groggy in the morning.

So my next quest is to try low-dose Melatonin. I’ve never done this before, but it feels like my aging brain sometimes cannot get my natural melatonin to flow. I’m going to start with a very low dose of 1 milligram and see what happens. I’ve read about using it to help with transatlantic jet lag, but never tried it for that, either. It seems safe enough. So, we shall see.

Sleep is so essential to maintaining good health, especially when the world is going crazy.

And the antidote to all that crazy is to participate in preserving our precious democracy. (How’s that for a segue?!) Today is Election Day here in the USA. there is so much at stake. Be sure to exercise your privilege. If you haven’t already, please get out and vote!

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: Greta Bartolini

Aches and Pains

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It’s another beautiful fall day here in Central Massachusetts. I should go for a walk. But instead, I feel like complaining. My left thumb hurts. There is not just one pit of calcium starting to poke out of the inflamed ulcer. Now that the infection is clearing, I’ve discovered that there are actually two ulcers close together, each with a calcium pit at its center. And my eyes are glopping up with mucus because of Sjogrens and dry heat and possible allergies to leaf mold, of which there is plenty as our maples shed. And my right hip is bothering me for some reason.

Okay, that’s the list. Do I feel any better? Maybe.

When you live with a chronic disease like scleroderma, there is always plenty to complain about. The question is always how much to say, and to whom? I figure it’s okay to rant a bit here, Dear Reader, since you either live with all these issues yourself and get it, or you care about someone who does. But I have found over decades of living with scleroderma that most people, when they ask you how you’re doing, don’t really want a full inventory of your aches and pains. If you do share, then chances are that the listener will launch into all of their aches and pains or will tell you all about someone else they know with similar aches and pains. It inevitably turns into a game of can-you-top-this, which I do not care to play. So I usually keep my issues to myself.

When my sister and I were young, our family would visit our grandparents in Cincinnati for the holidays. As the only kids there (both our parents were only children, so no close cousins) we often ended up listening to our elders complain about all their aches and pains. Our running joke was to wonder when they would pass around their X-rays. (They never did.)

I have a lot more empathy for that crowd now that I’m their age. We all need to share what troubles or ails us. It’s a matter of determining which family and friends both truly care and know how to listen without competing for who has it worse. Finding those people is a great gift.

And so, Dear Reader, thank you for listening to all my rants and musings. I’m glad that you’re there. 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: Gratisography

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.

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

At Summer’s End

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Labor Day has now passed, alas. The school year has already commenced in our fair city. Once again traffic is heavier on the Mass Pike when I drive into Boston for medical appointments and other events, always a sure sign that vacation season is over.

Time for sweaters and jackets and warm pants. I still leave the bedroom windows cracked at night, but not as wide open as in recent weeks. The heat has not switched on, yet, but it won’t be long before I’ll need it to get out of bed in the morning.

I won’t miss this summer’s sweltering heat and humidity. But I will, as always, miss the comfort of being able to walk outside without multiple layers of clothing. I won’t miss blasting air conditioning in public spaces that triggers my Raynaud’s and dries out my eyes. But I will, once again, miss the long hours of sunlight and the ease of wearing sandals.

New England has been my home for more than 40 years, now, and I still love living here, despite the prospect of another cold winter. I will adjust, as always, to the seasonal shift into fall. I always revel in October’s colors, the stark light of late November, and the pristine blanket of winter’s first snowfall.

In praise of temperate climates, here’s a link to a recording of Antonio Vivaldi’s The Four Seasons. Even as I’ll grumble as sunlight dwindles, there is still much to be grateful for.

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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