Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

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.

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.