• Mind
  • Body
  • Sight
  • Hearing
  • Smell
  • Taste
  • Touch
  • Skip to primary navigation
  • Skip to main content
  • Skip to primary sidebar

Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

  • Home
  • About
    • Privacy Policy
  • What Is Scleroderma?
  • Resources
  • Show Search
Hide Search

body-mind balance

Inner Workings

Evelyn Herwitz · January 24, 2023 · Leave a Comment

An article in Monday’s Washington Post caught my eye: “Earth’s inner core seems to be slowing its spin.” This gave me pause. So, I wondered, does this mean that eventually our planet will stop spinning and we’ll all be flung into outer space in the absence of gravity? Fortunately, a sentence below the headline reassured, “This isn’t the beginning of the end times.” Good to know.

The reporter went on to explain what exactly constitutes the Earth’s inner core (“a superheated ball of iron slightly smaller than the moon”) and various ways that deep-earth scientists measure its spin, and the debate over whether the inner core is actually slowing, or slows and speeds up in cycles, and related implications. One of the most interesting takeaways—all this internal movement that I never knew about plays a key role in establishing the Earth’s magnetic field, which protects us from cosmic radiation. It also influences the length of each day. Which, it turns out, has been increasing by milliseconds for centuries.

How this unseen, spinning molten mass affects life on Earth remains one of the mysteries of our universe. Somehow, this strikes me as totally appropriate. So much of what matters in life is hidden beneath the surface. How well do we really know others, let alone those whom we’re closest to, let alone ourselves?

And so, on this snowy afternoon, as I watch huge flakes drifting by my window, bending evergreen branches in our backyard beneath a plump coat of white, I’m grateful for that mysterious ball of molten iron, whirling well beneath us, ensuring that we won’t be destroyed by cosmic rays. So much seems uncertain in this world, I’ll take it on faith. And a millisecond longer day, too.

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: Javier Miranda

Share this:

  • Share
  • Email
  • Print
  • Facebook
  • Twitter
  • LinkedIn

Filed Under: Body, Mind, Sight Tagged With: body-mind balance, mindfulness, resilience

Frazzled

Evelyn Herwitz · December 20, 2022 · 6 Comments

It’s that time of year when everyone is running around trying to finish up last-minute holiday shopping, fretting over holiday menus and meal prep, and stressing over holiday travel, all while Covid once again seems to be nipping at our heels. (PSA: Please get your Covid bivalent booster and flu shot ASAP if you haven’t already!)

Which is why I was grateful to just sit and finish the Times crossword while our Hanukkah candles burned Sunday night, the first night of the eight-day festival. It was peaceful and our home smelled delicious from the latkes Al was frying. And very good they were, too!

I still have a few small gift errands to run. I’ve also, in recent years, shifted from gifts to charitable donations for family members. I ask what they’d like me to support and then make a donation in their names. Everyone feels good, and there’s no risk of the gift being delayed or late, not fitting, or ending up on a shelf. And it’s easy to do.

Still, the frenzy can be contagious, which can be fun if you like all the stimulation. For my inner introvert, however, peaceful moments watching candles burn is more to my liking.

In the midst of all this, whatever your preferred holiday mode, it’s good to know that the Winter Solstice falls on this Wednesday, December 21. Which means that this Thursday, the days will start getting longer again. The difference may be infinitesimal, but in my mind, realizing we’re making the seasonal turn here in the Northern Hemisphere is always a huge.

And with that, I wish you, Dear Reader, a joyful holiday, whatever you celebrate. Let the light shine in.

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.

Share this:

  • Share
  • Email
  • Print
  • Facebook
  • Twitter
  • LinkedIn

Filed Under: Body, Mind, Sight, Smell, Taste Tagged With: body-mind balance, mindfulness, resilience, stress

Namaste

Evelyn Herwitz · November 29, 2022 · Leave a Comment

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.

Image: Zoltan Tasi

Share this:

  • Share
  • Email
  • Print
  • Facebook
  • Twitter
  • LinkedIn

Filed Under: Body, Mind, Sight, Smell, Touch Tagged With: body-mind balance, exercise, hands, managing chronic disease, mindfulness, resilience

What I’m Thankful for this Thanksgiving

Evelyn Herwitz · November 22, 2022 · 6 Comments

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.

Image: nafety_art

Share this:

  • Share
  • Email
  • Print
  • Facebook
  • Twitter
  • LinkedIn

Filed Under: Body, Mind Tagged With: body-mind balance, managing chronic disease, mindfulness, resilience

Guinea Pig

Evelyn Herwitz · November 1, 2022 · 2 Comments

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.

Image: Bonnie Kittle

Share this:

  • Share
  • Email
  • Print
  • Facebook
  • Twitter
  • LinkedIn

Filed Under: Body, Hearing, Mind, Sight, Touch Tagged With: body-mind balance, hand surgery, managing chronic disease, Raynaud's, resilience, scleroderma research

  • Go to page 1
  • Go to page 2
  • Go to page 3
  • Interim pages omitted …
  • Go to page 46
  • Go to Next Page »

Primary Sidebar

Subscribe via Email

Enter your email address to subscribe to Living With Scleroderma and receive new posts by email. Subscriptions are free and I never share your address.

About the Writer

When not writing about living fully with chronic health challenges, Evelyn Herwitz helps her marketing clients tell great stories about their good works. She would love to win a MacArthur grant and write fiction all day. Read More…

Blog Archive

Recent Posts

  • Dry Spell
  • Inner Workings
  • Snake Eyes
  • Open Wide
  • Lessons from My African Violet

I am not a doctor . . .

. . . and don’t play one on TV. While I strive for accuracy based on my 40-plus years of living with scleroderma, none of what I write should be taken as medical advice for your specific condition.

Scleroderma manifests uniquely in each individual. Please seek expert medical care. You’ll find websites with links to medical professionals in Resources.

Copyright © 2023 · Daily Dish Pro on Genesis Framework · WordPress · Log in