Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Mind

Namaste

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Staying in shape during the pandemic has been, shall we say, a challenge.

The nearby college gym, where I walked an indoor track and rode a stationary bike, shut down to non-students for months in 2020. Even when it reopened for members like me the following year, I didn’t want to risk Covid exposure. Same story for the studio where I took Pilates classes.

I tried some online classes, but that didn’t work. So, I fell back on my favorite form of free exercise, walking my half-hour route around our neighborhood. But, of course, cold weather and rain and ice presented plenty of excuses to cocoon inside.

Other than my daily morning and evening stretches, which have spared me from becoming totally inflexible, I have definitely lost muscle tone and strength. I’ve been somewhat better about taking my walks in good weather, but now that we’re entering winter here in New England, I’m having a harder time pushing myself out the door before it gets dark.

Given my recent diagnosis of Type II stress-induced pulmonary hypertension, however, something had to change. And so, after procrastinating and feeling more creaky as a result, I finally decided to sign up for an easy yoga class to build strength, flexibility, and stress-management skills.

The studio is 15 minutes from home in a lovely, historic carriage house near downtown. As soon as I walked into the space, with its soft lighting and lavender scent, I felt calmer. I introduced myself to the instructor and explained my limitations (can’t flex my wrists, limited range of motion, balance issues, stiff ankles and toes). She was welcoming and immediately helpful, setting me up with a thick yoga mat, knee pad, blanket, and blocks for support, and gave suggestions for how to modify some of the poses. Then, to my surprise, a friend showed up, so I had a buddy.

The hour passed quickly, and the pace was slow enough for my skill level. I’m pretty good at figuring out how to modify poses, although my muscles were definitely trembling with some of the balancing and downward-facing positions. But I made it through. And the most amazing thing—my back felt great afterward, a major bonus.

I returned last week with my younger daughter, who was visiting for the holiday weekend. She has more yoga experience than I do, and she really enjoyed the class, validating my assessment that the instructor is excellent and it’s the right level for me. And, it was great to be able to go together.

So, I’m going to do my best to continue. It feels good to be back in a studio setting with an expert instructor who really cares to help me succeed. It’s also great to realize that I’m not as out of shape as I thought. And finding a much-needed weekly oasis of calm? All the 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.

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What I’m Thankful for this Thanksgiving

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For the first time in three years, we’re planning to get together with Al’s cousins for Thanksgiving. While we can never, ever, dismiss Covid as a wily adversary, it does feel as if the pandemic is finally morphing into an endemic, and that we’ll cope with it like the annual flu, with updated vaccines each year.

Now that Al and I are fully vaxxed for Covid and the flu, we’ve been getting out more. This past weekend we attended a wonderful concert of piano and cello compositions by J.S. Bach. We’re no longer worried about eating inside restaurants. I always carry a mask, but have stopped using it unless I’m on mass transit or am in a crowded, enclosed space. Of course, however, I follow rules for masking in health care settings.

So far, so good, thank goodness. I also feel like I need to risk exposure to whatever else is floating about, just so my body produces antibodies on its own. (Though I am not looking for trouble, either. If someone is sneezing or coughing nearby, out comes the mask.)

It is a relief. I am incredibly grateful for all the effective vaccines and anti-viral medications, for free access to same, for health care professionals who have worked so hard under such heavy pressure during the worst of the pandemic, for all those who showed up and solved problems and kept things running.

There is more to be grateful for this holiday. Our election system worked this November, despite so many threats and strains. Our democracy remains under tremendous pressure, and the risks of irreparable harm remain huge. But I am more hopeful than I have been this past year that people of good will, and especially young folks, will rise to the challenges before us.

On a more personal note, I’m grateful for my husband, the happiest man on Earth since he retired a few weeks ago, my two amazing daughters, loving family and good friends, a warm home in this chilly season, excellent physicians, a caring community, and you, Dear Reader, for joining me on my journey with scleroderma and all its twists and turns.

Happy Thanksgiving.

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.

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Do Not Use If Allergic

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I am one of those people who still watch the news on cable, rather than solely on social media, streaming services, and other internet sources. And because I still watch the news on cable, I am part of the aging demographic that is bombarded with ads from drug companies.

There are ads for diabetes drugs that lower your A1C level, ads for drugs that supposedly prolong your life if you have advanced cancer, ads for drugs to relieve symptoms of autoimmune diseases like Crohn’s, ads for drugs to help manage asthma, ad nauseum. Perhaps all these drugs have their place, and if so, I hope they actually do some good for those who need them.

But I find the ads ridiculous. Inevitably, as images of happy folks living wonderful lives in loving relationships flash across the screen, accompanied by up-beat music, the voice-over ends the sales pitch with a laundry list (because they must, under FDA regulations for marketing directly to patients) of all the dire side effects that could happen. Why would you want to take a drug to manage bipolar disorder, to name just one example, if it could potentially make you feel suicidal? Isn’t the cure worse than the medical condition?

Of all the required warnings, however, the one that strikes me as most inane cautions the viewer not to take Drug X if you’re allergic to it. So, how do you know if you’re allergic to Drug X if you’ve never taken it?

Apparently only in America—and in New Zealand, it turns out—can drug companies peddle prescription drugs directly to easy marks, excuse me, potential patients. How fortunate for us. I suppose the strategy is if you push brand recognition, a patient would, of course, ask her physician to prescribe the particular miracle cure. Unless, of course, she listened to that long list of negative side effects.

The goal of this information overload is undoubtedly truth in advertising. A good thing. But when we only hear a litany of side effects, absent the evidence-based, actual risk of having a particular bad reaction to the drug, the information is basically useless.

I have a better idea. Just cut all drug ads for good, like we did years ago for tobacco products. The money that goes into making and placing these ad campaigns only hikes the cost of prescription drugs for the people who actually need them. It’s high time for Big Pharma’s marketing strategy, priming patient demand to push their pills to physicians, to go the way of the Marlboro Man and ride off into the sunset.

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.

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Hats Off

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It’s Election Day here in the U.S. I write this with some trepidation. There is so much misinformation, so much distrust, so much othering of each other. It is also an extremely important Midterm election, with a lot at stake.

But I’m not going to dive down that dark rabbit hole, where I’ve been spending all too much time of late. Instead, I want to express my gratitude to all of the citizens around this country who, despite some significant risks to their personal safety (a tragic and pathetic reality), are staffing election sites today. I have several friends here who are poll workers. They do an incredible public service.

From them, I’ve learned about the meticulous process of counting ballots, recording that data, sorting ballots by ward and precinct, and securely delivering the ballots to the City Clerk’s office. It’s a long, rigorous endeavor that takes many, many hours. To these civic-minded volunteers, I say a heartfelt thank you.

We have a lot to be grateful for in this country. It’s up to each and every one of us to make sure we participate by voting—and by respecting the election volunteers who give of their time and effort to ensure a fair and accurate count of those votes. Without their commitment, especially in times like these, we would be in dire straits, indeed.

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.

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Guinea Pig

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Over the four decades I’ve had scleroderma, I have occasionally participated in research. One of the first studies I signed up for was in the mid-’90s, a trial of medications for Raynaud’s at Boston Medical Center. It was a randomized double-blind study that involved taking a daily pill, recording my experience with Raynaud’s in a journal, and coming to BMC every so often for a check-up with the lead investigator, the late Dr. Joseph Korn. Dr. Korn was responsible for BMC becoming a research center for scleroderma, and his successor, Dr. Robert Simms, became my rheumatologist until his retirement a few years ago.

Which is to say that, even though I’m pretty sure I got the placebo in the Raynaud’s study (no improvement), the long-term benefit was that I ended up being treated by one of the top scleroderma rheumatologists in the U.S. as a result of my participation. I also realized, after driving into Boston on a semi-regular basis, that I could expand my options for work to include that city. Indeed, within about a year, I landed a job as marketing director at a small college in a Boston suburb, a position I held for a dozen years.

Even before the Raynaud’s study, I contributed tissue samples from my placenta after my younger daughter was born to researchers at the University of Pittsburgh. My hands have been photographed and written up in medical journals. For several years, I participated in Grand Rounds at BMC, to help educate young medical students about scleroderma. And I’ve served in a focus group to test intake forms for patients with scleroderma.

I’ve also given blood work for various studies over the years, though I draw the line when it comes to tissue samples from my hands. Given my history with ulcers and long healing times, I don’t want to aggravate my hands more than necessary, even for science.

Most recently, last week I received a call from the cardiology fellow who helped administer my right heart catheter stress test for pulmonary hypertension, to ask if I’d be interested in participating in a study of a non-invasive version of that test. The investigators want to know if a stress test that takes measurements using an MRI would be as accurate as the invasive version that I did. I said I’d be willing to do it, but in a few months. I just need a break from all the measuring. But I do want to help, especially if it means sparing others from the heart cath version, which, as I’ve written here, is no fun.

The other study I’m participating in currently is about cognition (related to aging, as opposed to scleroderma). This one involves playing a video game on an iPad at least once a month for a year. You have to do a variety of tasks that require you to navigate an obstacle course while capturing certain shapes. Conceptually, it’s straightforward, and I do okay. No decline, at least, in my scores. But the problem with the game itself is that it requires manual dexterity that I do not have. So it’s not really measuring my cognition as much as my ability to manipulate my fingers. I’ve mentioned this to the researchers, and they’re aware of the issue. But I’ll continue, anyway.

I write this not to pat myself on the back, but to encourage all of you who are able to take the time, to consider participating in scleroderma research. We’re a relatively small cohort, and whatever information researchers can glean from our experiences will help move us closer to a cure. It’s often easy, and the personal benefits—as I found with the Raynaud’s study— can be significant. If you are not being seen at a research center, as I am, you can find more about studies looking for participants on the Scleroderma Research Foundation website.

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.

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