Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

finger ulcers

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

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.

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.

Image: zero take

Down to Three

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One of the best things about summer is that my finger ulcers tend to heal. For months I was dealing with as many as six bandaged fingers, changing those bandages twice daily. It took at least a half-hour each time I changed dressings and used up a lot of bandages.

Now, happily, I’m down to three: both thumbs, which are always a problem no matter what time of year, and my right index finger, which is nearly healed up. The thumbs are an issue because they contain so many calcium pits. If you look at an X-ray of my hands, each thumb contains a long chain of calcinosis. The index finger had a big piece of calcium that finally popped out about a month or so ago, then another fragment emerged last week. But it’s closing.

All those hot, hot days in recent weeks have been really helpful, even if the heat is exhausting. Thank goodness.

I see the team at our hospital’s Wound Clinic about every two months, and they were impressed. They also gave me a kind of crystalline medical grade honey it to try. It helps to break down the thick tissue that forms on the inside of my thumbs. You just have to be judicious using it, because I have found in the past with medical grade honey that it can make things worse if you overdo it. But it sure smells good.

So, here’s to summer. I hope those of you in the northern hemisphere are enjoying it, despite the wildfires, intense storms, and heat waves. We need to savor it while we can.

Image: Alexander Mils

And now for some shameless self-promotion. . . . My sincere thanks to all who participated in the cover poll for my forthcoming novel, Line of Flight. More than 400 people voted, and this cover won by a large margin. I’m thrilled, because it was my favorite, too.

And now I’m pleased to announce that my book is available for pre-order. It publishes on November 17, this fall. Pre-orders help the book to get higher rankings on online seller sites, so more people find it. Here are the details and links for pre-orders.

Thanks for your encouragement and support!

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.