Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

calcinosis

Hand-off

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I’ve been dropping things lately. This is largely due to calcinosis in my thumbs that makes it harder to hold on. My dexterity waxes and wanes, depending on how a particular piece of calcium is working its way out through the skin, and currently some shards are on the move.

And so, Sunday night, when I tried to lift a large pot of cooked pasta over to the kitchen sink to strain out the water, you guessed it, the pot slipped and I splashed hot pasta water all over the kitchen floor. Thankfully, not the cooked pasta! And I managed to move out of the way so I didn’t get burned.

But I was really annoyed with myself. Al was home, fortunately, and calmly cleaned up all the water on the floor with old newspapers and towels, while I groused.

Finally I calmed down. And the meal turned out well.

I don’t usually get so frustrated with my hands. I try to take very good care of them and respect their limitations.

Which, of course, are my limitations. It’s a strange aspect of this disease, that my hands can look and feel so alien and disfunctional, but they remain a part of me. Even after four-plus decades living with scleroderma, I sometimes still find this surprising. I see my hands all the time, but there are moments when I’ll catch their reflection framed in a mirror and am shocked at how bizarre they look.

Then I remind myself that they are me, that regardless of how strange my hands appear, I’m still able to do as much as I do. And to be grateful for that. And to forgive myself for getting frustrated. It just is.

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.

Routine Exam

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Monday afternoon found me in my hometown rheumatologist’s office. I see her twice a year, so that I always have a specialist nearby who knows my history, in case I need help pronto without driving into Boston. She is chair of the rheumatology department for our local health care organization, very thoughtful, compassionate. She also respects my long experience with scleroderma. Mostly, she listens.

We went over the usual check-list: Blood pressure looks good. How are your hands doing? Any prescriptions need refilling? Has anything changed? I reminded her that I needed her to schedule pulmonary function tests at the hospital, because my Boston Medical pulmonologist needs them when I see him in May. She sent in the order.

When she asked about my breathing, I told her I’d had an echocardiogram at Boston Medical a couple of weeks ago. She looked in MyChart. Although my exams from both local and Boston docs are visible in the online medical record, she could not access the Boston test results, something to do with HIPPA regulations.

Fortunately, I was able to get into my BMC account on my phone and pull up the information for her to review (one of those times when an internet search came in very handy). All normal, pulmonary pressures stable. I asked her about medical terms in the report: What is mild tricuspid regurgitation? Nothing to worry about, everyone has some, the echo is very sensitive. Nice to get that explanation in real time.

I filled her in on the mammogram kerfuffle. I asked her if the fact that I have some calcification in small vessels in my left breast is any indicator that more calcinosis in breast tissue could occur. She shook her head. Never seen that in 30 years of practice. I’ll take it.

I shared the good news that after several months of calcium pits emerging from my right thumb, the fifth shard finally emerged on Sunday, and it seems to be done, for now. (When I pulled the last pit out that evening, I showed Al: Look, it’s just a hole! And the hole, per usual, is finally closing on its own.) That must feel a lot better, she said. Yes, definitely.

I told her about my struggle with dry eyes from Sjogren’s and the great help I’m getting from my optometrist at the local college dry eye clinic. When I saw him last week to report back on new eye drops he’d given me (successful) and have him replace the dots on my scleral lenses that indicate how to orient them in each eye, he reminded me that I need to start allergy drops again, that it’s going to be a bad allergy season this year—the likely reason my eyes keep getting goopy.

We discussed the trade-offs of an infusion for osteoporosis (which I have had for years, like my mom and her mother). Despite not having infusions for over a decade, my bone density remains stable. My original rheumatologist, the one who saw me when all my symptoms erupted, had felt the infusions weren’t really necessary if bone density hadn’t changed.

At issue is whether those infusions can exacerbate bone resorption in my teeth. The unanswered/unaswerable question is whether the risk of losing more teeth and getting very expensive implants in a difficult procedure is worse than the risk of bone fracture if I fall. She said she would defer to my dentist. So I need to follow up with him. (And check the latest research about the effectiveness of bisphosphonates in reducing bone fractures. The answer is—it depends. Here’s info from NIH.)

And that was how we left it. It’s a lot to keep track of, but after all these years, it really does feel routine. Thank goodness, I’m holding steady.

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: Mathew Schwartz

False Alarm

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I had a routine mammogram a couple of weeks ago. Not my favorite “non-invasive” test, as any woman knows. As the tech was arranging me for the inevitable squash grip of the mammography mammoth, I asked her why she had chosen this particular technical specialty. Her answer: “Because it saves lives.”

Fair enough. Fifteen minutes later, I was glad to be done with it for another year and on my way home.

Or so I thought. A week ago Sunday, I received an email about a new message for me in MyChart, my online portal for medical records and communication with my teams here at home and at Boston Medical. I took a look. No problems in the right breast. Here’s what it said about the left: “Indeterminate calcifications in the upper outer quadrant require additional views. Diagnostic mammogram is recommended for further evaluation.”

Calcium deposits in breast tissue (I learned, from a quick internet search) can be a precurser to breast cancer. A letter in my file indicated that I should set up an appointment for another series of X-rays, adding this supposedly reassuring sentence: “Most such findings are benign (not cancer).” Probably just a nuisance, I concluded. But I wondered, with so much calcinosis in my fingers, could this actually have something to do with my scleroderma? And what would that mean?

As luck would have it, I had a routine appointment with my Boston Medical rheumatologist the next day, so I filled him in and asked what he thought. Was it possible to have calcinosis from scleroderma in breast tissue?  Sure enough, yes, it’s possible. Indeed, it’s possible for calcinosis to show up in all kinds of strange places. He shared a research study with X-rays of some pretty dense (and very uncomfortable-looking) calcification of breast tissue. We talked at length about how to proceed, how to avoid unnecessary diagnostics, and more, and concluded that he would send a referral to Boston Medical’s breast health clinic, which is one of their top specialty clinics, to get me into their queue, just in case.

I went home in a terrible mood. Before I had thought this was probably nothing, but after that conversation, it felt like something more serious. I called the radiology clinic at home and was able to get an appointment for first thing the next morning to do the additional mammograms. I was told that I would get results at the appointment, which I appreciated.

When I got to radiology last Tuesday morning, I told the tech that I have calcinosis from scleroderama. She did not think that would be a likely factor in the results, but I asked her, nonetheless, to tell the radiologist. After three very squished close-up scans of my left breast, I waited in the exam room for the outcome. The radiologist came in and said the words I was hoping to hear: not related to breast cancer. I have “calcification of some small vessels” from scleroderma. Nothing to worry about.

What a relief! When I got home, I wrote my rheumatologist about the results and asked what that meant. Would some calcified small blood vessels lead to eventual tissue death? Was there anything more to understand about this? His answer: “Calcinosis unfortunately remains a mystery.” I can live with that. No sense speculating about it. I’ll find out in due time if it matters or not, and meanwhile, there’s nothing to be done.

So, there you have it. This very strange disease continues to throw some very wild curve balls. But at least this episode wasn’t as scary as it seemed. I write this post for you, Dear Reader. Mammograms do save lives. They can also create uncertainty and may require clarification. In case you get a similar worrisome result from a mammogram, be sure to advocate for yourself and explain your full medical situation. It matters.

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: John Cafazza

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