Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Better Late Than Never

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So, I missed my self-imposed deadline for writing this week. Too much going on. I don’t think I’ve forgotten in years, and I’ve been writing this blog since 2012.

A few miscellaneous notes:

  • Melatonin works. It’s helped me get to sleep on several occasions over the past week. There is a bit of a hangover effect if you take it in the middle of the night, but better than not sleeping at all.
  • My left thumb is still not healed, though I was able to stop antibiotics after 20 days. Fortunately, I go to the Wound Clinic on Thursday, and my NP is great at problem solving. A well-timed visit.
  • Two weeks ago, I forgot to write about my visit with my pulmonologist who follows my interstitial lung disease. No new lung nodules, and the steroid inhaler he gave me (because he’s concerned that I have stiffening in my bronchiole that is making it harder for me to fully exhale) hasn’t really helped. I can now use it as a rescue inhaler, but I don’t have to use it every day anymore, a good thing because it was making me very hoarse. There are other options on the table, none of which thrill me, but we’ll reassess in February after another round of PFTs.
  • Trees here in Central Massachusetts have a mulled wine tint, and many of the sugar maples have lost their leaves. I used to not appreciate this time or year, felt it was a dull and crumbly phase of fall, but now I actually like it. The colors are softer, and the sidewalks and streets are carpeted with crunchy leaves. It’s a subtler kind of beauty. And I love the crispness of November light.
  • Back to multiple layers, warmer coats, wrist warmers all the time. The sun sets earlier. But the shift back to standard time actually feels better for my own circadian cycle.

And so, as is always the case every moment, we’re in transition. Be well, Dear Reader. I’ll try to be on time next week.

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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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.

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Pop-up

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I’ve been tending three digital ulcers for months, now—one in each thumb (the infected left thumb is slowly continuing to heal) and one at the tip of my right index finger. This latter ulcer has been refusing to close up for weeks, to the point that I suspected another pit of calcium was working its way out.

Sure enough, Monday morning as I was changing my bandages, out it popped. It didn’t hurt, for a change, and now I hope the ulcer will finally close.

This particular ulcer was the passageway for previous calcium pits, however. It now seems that when one finds its way out, others follow. I am suspicious that the infected ulcer in my left thumb may also be hiding some emerging calcium

My Boston Medical rheumatologist had given me a prescription for colchicine as a possible treatment, which is typically used to treat gout. But no actual cure is known for calcinosis, and colchicine can cause diarrhea. My gut is only just healing from the latest long bout with that. So, not going to experiment, for now.

I’ve lived with this odd complication of scleroderma for decades. For the most part, it’s manageable, albeit annoying and occasionally quite painful when the calcium pit is stuck just beneath the surface. I always expect the pits to be whitish, since they are made of calcium, but they’re usually a charcoal gray. They can be round or jagged, often resembling grains of sand. I probably harvest about 10 each year.

And so it goes. Another little victory for my body’s ability to heal itself.

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.

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.