Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

body-mind balance

And So It Goes

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I was planning to write an upbeat post today, in anticipation of my 70th birthday on Thursday. But life has a way of throwing curve balls. On Sunday, we discovered that Al has Covid. So far, he seems to be doing okay, and we expect a green light for him to start a course of Paxlovid. The last time he had Covid, nearly two years ago, it worked well for him. But he still has to lay low. So our dinner plans for Thursday night are postponed.

So far, I’m doing fine, no symptoms and testing negative. I sincerely hope that I don’t get Covid for my birthday. I also hope we are both are in the clear for hosting family for next week’s Passover seders.

I was texting with our older daughter on Sunday, who was very sympathetic about the bad timing of all this, and I remarked that turning 70 is all about taking this kind of downturn in stride—even as I was pretty frustrated when I saw Al’s positive test result that morning. As she rightly noted, a birthday is just one day, but “you can be celebrated all the days!” Very true.

For weeks I had been debating whether to get the recommended spring Covid booster. I had discussed this with both of my rheumatologists, at home and at Boston Medical, as well as with our geriatrics nurse practitioner. All had been ambivalent. The issue is that the spring booster is the same vaccine as last fall’s, although the prevalent Covid strains have evolved. While it’s possible that the booster could help dampen the impact of those new strains, it’s not conclusive that it would make a difference.

Had I gotten the booster, would I be at less risk for getting Covid for my birthday? I’ll never know. However, given my exposure, whether I catch the virus or not, I will build up some more immunity from the current strain. So I guess that’s a plus. But one I could do without.

Fortunately, even before Al got sick, we had decided to schedule an overnight trip to New York City to celebrate my birthday in early May. My original idea, to go this week, would have been too much, too near to Passover, which involves a lot of cleaning and preparation. Now it would have been impossible.

And so, all I can do is wait and see. Getting upset won’t change anything. I’ll make the best of my 70th birthday, regardless, and we’ll celebrate together when we’re both well. Lessons learned from seven decades.

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: Simon Hurry

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

Soundscape

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As I was lying on an exam bed Monday morning, during a routine echocardiogram, I was thinking about sounds. Not just the sounds as the tech pressed the ultrasound probe to my chest and took photos—beep—typed—clackety-clunk-clackety-clackety-clunk—and played audio of my heart beat—woah-wacka-woah-wacka-woah. That alone was quite the medley.

I was also listening to the sounds of the Boston Medical office building—the whoosh of air through metal ducts in the ceiling, the padding and occasional squeak of rubber-soled shoes along the corridor, someone’s cell-phone ringing, muted conversations among the medical staff.

Medical offices have a very distinctive soundscape. Especially offices that are tied to hospitals. There is a certain muffled white noise that permeates the space, some combination of the type of linoleum and carpeting, sound-absorbing tiles on high ceilings, the cushioned shoes, the air ducts. Conversations ebb and flow around corners and through walls of exam room warrens. You can hear personal details that you shouldn’t. You can sense the tension in sotto voce murmurs.

In waiting rooms, I’ve decided there are basically two kinds of people: those who respect the presence of others and keep their voices down, and those who think they’re in their own living rooms and yell on their phones or play loud videos or music without wearing earphones. Some waiting rooms post signs that cell phones are not allowed. Some places enforce those rules. Others don’t. I have yet to determine a pattern of which kinds of doctor’s waiting rooms are more likely to be quiet or noisy. It would be an interesting subject for research.

All I know is if you dropped me blindfolded into a medical office building, I would know where I was immediately, just by the sounds. Which also means I’ve spent way too much time in medical office buildings.

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: Pawel Czerwinski

On Getting Older

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In just over a month, I will turn 70. That number doesn’t feel so old to me anymore. In fact, it feels about right.

There’s an old saying that you’re as young as you feel. Can’t say I feel young—at least, not physically. My body has been aging prematurely since I developed scleroderma in my late twenties. In some ways, I don’t really know what it’s like to be thirty or forty, or even fifty, since I was always ahead of the aging curve. I’ve been living for decades with aches and stiffness and body parts that don’t work and a sense of physical vulnerability that normally wouldn’t arise until late middle age. I used to envy friends who were healthy and energetic when I couldn’t be. I wondered what that would feel like.

Not anymore. Everyone’s caught up. Meanwhile, my decades of experience with premature aging have made the onset of the normal range of physical limitation that come with this time of life just another blip. Aches and pains when I wake up or rise after sitting for a while. Check. Need to manage my energy. Check. Lots of specialists appointments. Check. Need to manage multiple meds. Check. Harder to walk than before. Check. Eyes too dry and tire more easily. Check. Hands giving me problems, hips, feet, knees. Check, check, check, check.

It adds up, and I certainly understand how distressing it is when all this starts to happen, whatever your age. But I never expected scleroderma to give me an advantage. It has forced me to learn how to pay attention to what ails me, problem solve, adapt, get proper medical attention, manage my health care, and most importantly, focus on what I can do rather than on what I can’t. After forty-plus years of living with it all, turning 70 doesn’t really seem like a big deal.

In fact, it feels like an accomplishment. And I’m looking forward to it.

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: Volodymyr Hryshchenko