Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

calcinosis

The Pits

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Over the weekend, I pulled yet another calcium pit out of the inside joint of my right thumb. It is the third tiny shard that has emerged in the past month-plus. And although I’m not certain, it feels like another one is surfacing.

This makes grasping objects complicated. These tiny charcoal-gray bits of calcium are quite sharp. The slightest pressure, as they work their way out of my skin, is quite painful. And there is nothing to be done but wait until enough is showing that I can grasp it with a pair of tweezers. Not a fun procedure.

Several years ago, I discussed this with my hand surgeon. We looked at X-rays that revealed chains of calcium pits in each of my thumbs that run the length of both digits. He advised against trying to remove them, because of the collateral damage it would cause, but offered to extract one if it became too painful and difficult for my to deal with on my own. The one time I actually scheduled an appointment with him, the offender popped out on its own, which was a relief.

This whole issue is complicated by the fact that I can’t turn my hand around enough to see the opening in my thumb. Not enough rotation in my wrist. So I rely on a mirror, but that’s tricky, too.

No one knows know why these calcium deposits form in scleroderma. There is at present no treatment, only remedial steps to ease the discomfort. According to the Scleroderma Research Foundation, increased blood flow to extremities may help, and lesions may respond to antacids, bisphosphonates, or calcium channel-blockers. But there is no cure.

So, my main goal is to protect my thumb as best I can and keep it clean to avoid an infection. As I type, I am experimenting with wrapping my bandaged thumb in Coban, which is a self-adhering mesh tape that provides some extra padding. Not sure if it’s helping the hole in my thumb, but it feels a bit better when I strike the space bar on my computer—a good thing, because calcinosis often forms at pressure points, and I think another spot may be forming where my thumb hits the keyboard.

Basically, it’s a damn nuisance. Nothing to do but wait it out.

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.

Small Miracles

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For months, at least since March and maybe longer, I’ve had a charcoal-gray pit of calcium sticking in my left thumb. I have not been able to budge it or tease it out with tweezers. It has been lodged there, staring at me as I change my bandages morning and night. Sometimes it hurts, other times not. Sometimes it gets infected. Mostly it just serves as a reminder to handle things with care so I don’t bang it.

That is, until this weekend. I was doing my evening routine of cleaning my ulcers and re-bandaging them when I suddenly realized that the calcium pit was gone. No bigger than a poppy seed, it lay there on a piece of tissue. Really? I wondered, rolling it between thumb and forefinger, you were that small all this time?

More calcium hides beneath the surface in both of my thumbs. In x-rays, they look like long white chains from thumb tip to below the joint connecting thumb to palm. Slowly but inevitably, the pits work their way out of the skin. There’s nothing I can do to get rid of them but wait until they are ready to emerge, then wait until each one dislodges.

There is an obvious lesson about patience, here. I’ve learned to play along, not to aggravate the skin and nerves by jiggling the pit in a vain attempt at extraction. As long as I’m careful with how I cushion it with dressings and use Aquafor ointment to keep it moist (but not too moist) eventually, the calcium will exit on its own.

But there’s something else that fascinates. And that is how my body continually surprises me with its ability to heal, scleroderma or no scleroderma. It doesn’t always happen the way I want it to, or on a convenient timeline, but it does happen. That a calcium pit the size and color of a poppy seed can cause so much discomfort and then, one random evening, bid adieu, is one of the mysteries of this disease and the miracles of the healing process.

And so, until the next one appears, I will tend the hole in my thumb as it fills and be grateful for the reprieve.

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: Victoria Tronina

In Stitches

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It’s been five years since I last had calcium deposits removed from the bridge of my nose, the fifth time I’ve endured this procedure. Usually, I take care of this annoying issue about every three years, but the pandemic put that on hold this time around—which ultimately meant that the calcinosis got worse.

Originally, I thought the problem was caused by the weight of my glasses. I get calcinosis in my fingers at pressure points, so it made sense. But I switched from wire frames to very lightweight Silhouettes years ago, and it has not solved the problem.

No one really knows why scleroderma can cause this build-up of calcium in unwanted places. My theory is that, regardless of how thoroughly my ENT plastic surgeons have tried to remove the calcium growths from my nasal bone, a seed remains that grows more calcium crystals over several years. They always biopsy what they remove, and it always (thank goodness) is benign. In any case, once it gets big enough, it becomes unsightly and increasing uncomfortable, stretching skin that is no longer very elastic.

This spring I met my new surgeon, Dr. E., who is chief of Otolaryngology at Boston Medical (his predecessor had done the last three extractions). I liked him and his team immediately. He is thoughtful and conservative about performing a procedure that is either unnecessary or has low potential for success. In fact, he was at first reluctant to take me on, given how fragile the skin on my nose has become, but we came to a meeting of the minds, with a plan to do a skin graft if necessary to close the wound.

And that is what he and his resident did last Wednesday. I’d had to postpone the procedure twice over the summer, given unexpected schedule conflicts. During that delay the calcium had pushed through the skin, so I was managing an open wound and doing my best to avoid infection until we could finally take care of it.

Nonetheless, I was not looking forward to the procedure. Getting Lidocaine shots in your face is no picnic, and neither is having the bridge of your nose cut open and calcium deposits scraped out of bone. Then there was the added complication of the skin graft, which they took from below my left ear. And sewing me back together.

I’ve learned from past experience that I do not do well with Lidocaine mixed with epinephrine, which is a preferred concoction because it limits bleeding. So, instead, with plain Lidocaine they had to use a cauterizer, which, even with local anesthesia, feels like pins and needles, and sometimes like tiny darts. And it smells like burnt roast, which is, of course, essentially what’s happening.

This all took over an hour. I did my best to keep breathing evenly through the process. Some music from the High Holidays was a welcome ear worm. In addition to suturing the graft, they stitched a rectangular piece of gauze, called a “bumper,” on top of the graft to hold it in place for a week. That comes off, I sincerely hope, tomorrow. Between the stitches under my left ear and the bumper, I looked a bit like Frankenstein’s monster when they let me see my face in a mirror.

“Can I have something to cover it?” I asked.

“What did you have in mind?” asked the resident.

“A bandage?” It seemed rather obvious. His concern was that it not pull at the bumper to dislodge it in any way, but there was no way I was going to walk around with a piece of bloody gauze stitched to my nose for a week. So he found a light blue bandage, which I later replaced with one of my good cloth bandages, and I have been carefully tending it since. I also started antibiotics the day of the procedure to avoid infection. Pain has been easily managed with OTC meds.

So, this has been the every-few-years routine. Except, Dr. E told me when he finished, there’s not a lot of bone left where the calcinosis has repeatedly invaded. He was clear that this is the last time he would do such an extraction. If it grows back, which it most likely will, then we’re talking rhinoplasty. “Well,” I quipped, “at least I have a lot of nose to work with.”

And that is where I find myself after Extraction #5. It’s a lot to process. If the calcinosis re-emerges in a year or so, I may not wait until it begins to form a noticeable bump to undertake the inevitable. I’ll be 70 next April, and if I need major nose surgery, it’s better to do it sooner than later. In the meantime, I’m glad this round is done. And the immediate benefit: I can breathe better.

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: Anne Nygård

Step-wise

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I see my podiatrist this week. It’s a good thing. Every couple of months, he rescues my feet from corns and tiny bits of calcium emerging from the tip of my right big toe. He also trims my toenails, which I can do for myself with a little difficulty, but still need help.

Scleroderma has caused the fat pads on my feet to recede significantly over the years, which makes it difficult to walk on hard surfaces. I really can’t go barefoot on our hardwood floors without discomfort. It feels like walking on bones. That lack of natural padding also makes corns more of an issue, especially when they form over joints.

Since last summer, I’ve been trying to manage a particularly annoying corn that keeps reforming over the metatarsal head of my fifth toe on the bottom of my left foot. Even with orthopedic foam inserts in my shoes—a necessity to cushion the impact of walking—I find myself rolling my left foot toward my instep, to avoid the feeling of stepping on a pebble. This places extra pressure on the metatarsal head under my big toe, which is also uncomfortable, and I end up walking with a slight limp and a rolling gate that aggravates other joints and my back.

It’s amazing how something so tiny can make it so much harder to get around. I find myself avoiding my neighborhood walks, lately, because of all this. And that means I get less aerobic exercise, and my weight starts creeping up again. If I don’t walk, I don’t sleep as well. And so on.

I’ve tried corn plasters and salicylic acid drops, which help a bit, but I can never fully extract the corn myself. Which is why I’m glad to be seeing my podiatrist this week. I’m hoping he can help me to figure out a way to keep the corn from reforming, although he’s told me recurring corns are a really common issue for his scleroderma patients.

My other possible solution is to cut away some of the foam in my left insert, essentially to make a little doughnut hole right where my corn touches it—kind of like a built-in corn cushion.

Living with scleroderma is, in some ways, a never-ending series of problems to be solved. Even after 40 years of managing this disease, it continues to surprise me. And so, my goal is to keep one step ahead, before the little stuff turns into something even more complicated and difficult to manage.

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: Christopher Burns

Unnecessary Procedures

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For well over a year, I’ve had a piece of grey calcium protruding from the pad of my right thumb. As I wrote back in February, I finally saw my hand surgeon and worked out a plan for him to remove it—the challenge being that it’s only the tip of a long chain of calcium that runs down the entire thumb. It gets in the way, hurts when I bump it, and generally makes me drop things.

Surgery was originally scheduled for this spring, but, of course, the pandemic put that plan on hold. I got a call at the end of May, as the hand surgeon’s office began to reopen, to see if I wanted to reschedule for June, but I declined. It just felt too soon—a good thing, as it turned out, because I got an infection in the left thumb that has taken weeks to clear, and I know he wouldn’t have operated under that circumstance, even if the opposite thumb was the problem.

The situation in the past few weeks has gotten really uncomfortable. With the clearing infection on the left and protruding calcium on the right, I was having greater and greater difficulty doing basic tasks. I had a note in my calendar to call the hand surgeon’s office this week and was now ready to get on his schedule as soon as possible.

Then, Sunday night, as I was changing clothes to get ready for bed, I felt a sharp twinge in my right thumb. Then I noticed some blood on my nightclothes. Sure enough, that nasty chunk of calcium had finally, finally, broken off of its own accord. It left a hole in my thumb, about an eighth of an inch deep. The tip of the rest of the calcium chain was barely visible and far enough beneath the surface to remain inoffensive, for now.

I was thrilled. No more need for surgery, no more risk of exposure in a medical setting to infections or Corona, regardless of precautions. From long experience, I knew the hole would quickly close up on its own. So I rinsed it with peroxide, bandaged it with antibacterial ointment, and went to bed.

By Monday morning, it was already half healed. Warm weather certainly helps. Best of all, I can finally use my right thumb again.

This is not to say that, if I’d had no relief, I wouldn’t have gone ahead with the procedure. But our bodies do have a way of healing themselves. I kept hoping this would happen on its own, which is why I took so long to see my hand surgeon in the first place. As if to drive the point home, in Monday morning’s New York Times was this article about how people who have had elective procedures postponed during the pandemic are actually staying healthier than expected.

Complex trade-offs. Grateful that the scale of options swung in favor of non-invasive, this time.

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: Roman Kraft