Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

mindfulness

And She Persisted

· · Leave a Comment

It is really hard to be patient. Especially now, when we’re so accustomed to getting immediate answers at the click of a keystroke. Especially when it comes to ambiguous health issues with no ready solution in sight.

But I have a different context for this observation, as I write on a rainy Monday morning. Please bear with me.

I have been working on a novel since fall 2014. Set in World War I, it’s about a widow whose estranged daughter runs off with her beau to volunteer for the French medical service, and the mother’s journey to find her and bring her home. You can read more about it here. For the past year-and-a-half, I’ve been looking for a literary agent who will help me get published. It’s a very long slog.

I’ve gotten some bites and requests for parts or all of the manuscript, only to have the agent reject it (“I didn’t fall in love”) or in one case, ghost me for the better part of a year after promising to read it. I’ve worked on the language and plot some more, completing the eleventh draft this spring. I feel confident it is my best work. But the book publishing world is highly competitive, and it is very hard for a debut author to get her toe in the door, let alone a whole foot.

It takes a ton of patience. And confidence. And a really thick hide. Earlier today, I spoke with a published author of multiple novels who was kind enough to read the manuscript for me and give me some feedback. It’s taken the better part of a year for us to connect. Worth the wait, because he was very encouraging, told me no need for any more revisions, just focus on getting it published. He had some good suggestions that confirmed my strategy going forward and also gave me a few other helpful tips. Most of all, he likened the process to starting a small business, which resonated for me, having wrestled through that experience years ago to launch my marketing consultancy. “A year-and-a-half is nothing,” he added.

It’s all about managing expectations, which is true of most challenging problems. American culture places a premium on speed, youth, and instant gratification—none of which has much value for solving a really difficult issue. Getting my novel published will take more time and research, many more queries, and a resolve to keep going even in the face of multiple rejections.

Managing an elusive disease with no known cure, like scleroderma, takes a lifetime of learning to manage symptoms, find the right medical team, build partnerships with health care professionals, practice a healthful lifestyle, get help for depression and other mental health challenges that arise in the course of such complexity, and find ways to live fully with the disease. For starters.

It takes a mother-lode of patience. For you, Dear Reader, that is what I wish on this rainy Monday morning.

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: Nathan Dumlao

On a Lighter Note

· · 4 Comments

I am back home since last Tuesday evening, our daughter is on the mend in Philly, thank goodness, and I’m nearly caught up with work, writing, volunteer activities, and keeping up with everything else that I need to keep up with. So, it was definitely time to do something fun this weekend. Al is skilled at finding hidden gems that are not far away, and for Father’s Day, he suggested we visit Forest Park in Springfield, Mass., one of the nation’s largest municipal parks, built in the late 19th century. I’m a fan of park design from that era, so we were were good to go.

I added to the mix another suggestion: a visit to Springfield’s The Amazing World of Dr. Seuss Museum, which commemorates the life and whimsy of Theodor Geisel, aka Dr. Seuss, one of Springfield’s most celebrated citizens. And that turned up another fun fact: Springfield has four other wonderful museums in the same lovely location, and admission to one is admission to all. So we added in a visit to the Michele and Donald D’Amour Museum of Fine Arts.

The best part of the Dr. Seuss Museum was having Al read to me, in his inimitable way, two books that neither of us had ever read before: There’s a Wocket in My Pocket! (1974), replete with delightful made-up rhyming words about a surprising cast of creatures hiding in a little boy’s house, and I Had Trouble in Getting to Solla Sollew (1965), an odyssey of mishaps that pokes fun at the idea that anything in life is free of troubles. Too true.

My favorite painting at the D’Amour Museum was a powerful acrylic on paper, Disappearing Forest 1, by Marlene Yu, all the more meaningful, given the Canadian wildfires. Then there were roses in Forest Park and the mysterious sphynxes guarding the dramatic mausoleum to Everett Barney, who donated much of the land for the park.

As always, I hope you enjoy my photos from our day. And watch out for those Wosets in your closets. . . . They’re actually rather charming.

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.

Moving On

· · 2 Comments

The last time I had a doctor’s appointment, I went without a mask. It was a few days after the Covid public health emergency was lifted in May, and masking in medical settings was no longer required. This felt strange, but liberating. I asked the medical assistant who took my vital signs how it felt to her. After three years of having to mask for work, she said, it was both odd and freeing. She found herself feeling for her mask to be sure it was in place and realizing it wasn’t there.

Don’t get me wrong. I think that masking has been an essential step toward reducing the spread of Covid and has helped to save lives. I’m sure it also kept me safer from other viruses. But I’m glad that we’ve moved on to be able to choose safely, for ourselves and others, when to mask and when it’s no longer necessary. So far, I’ve stayed healthy (knock on wood) despite not masking in a medical setting. I stopped masking in restaurants months ago, and in stores, and even on a long flight home from Germany in March, and still stayed well. Thank goodness.

I also got my second co-valent booster the first week it became available again for seniors. So that certainly helps give me an extra layer of invisible protection. And I remain meticulous about using hand sanitizer after touching public door handles, touch screens at check-out counters, elevator buttons, and using public restrooms. I did that before the pandemic, and I have never stopped. That’s just common sense.

Recently I noticed that Covid is no longer necessarily spelled with a capital C in news stories. I’m not sure if this coincided with the end of the public health emergency. It looks a bit odd, and I’m not quite yet ready to adopt that transition in my own writing. The virus has a long shadow. But perhaps this is just one more way that the pandemic has become endemic, like influenza, which is never capitalized and even has its own nickname, flu.

Covid is actually an abbreviation, already, of its full descriptor, corona virus disease. During the worst of the pandemic, I’d seen it shortened to ‘rona’ in casual texts and social media posts. Someday, perhaps, we’ll check off the annual rona shot on our fall medical to-do lists, along with flu shots.

Whatever you call it and however you spell it, all I can say is, to the best of our knowledge, thank goodness this very long, dark chapter has come to a close. As Dr. Sanjay Gupta wrote recently, while we still need to remain vigilant, now is the time to apply the hard lessons of the past three years, stay home when sick, be proactive about our health, and invest in staying well and living healthfully.

Stay safe out there.

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: Vera Davidova

Greening

· · Leave a Comment

At long last, it finally feels like spring here in Central Massachusetts. Over the weekend, the sun came out, the temperature climbed to 70°F, and all the trees that had been waiting for the signal unfurled their leaves.

We are once again surrounded by green. And so, Al and I went for a hike on Sunday. He took me to a beautiful forested park with trails around a cascading stream. I hope these photos give you the aahhh sensation I felt while hiking. Enjoy!

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.

Chopin to the Rescue

· · 2 Comments

Last Thursday, I drove two hours in heavy traffic to Beth Israel Deaconess Medical Center in Boston to participate in a three-hour clinical study. As I wrote back in November, not long after I had a heart catheterization stress test, one of the cardiologists asked if I’d be willing to participate in a study to find a non-invasive alternative. I agreed, because the test was very unpleasant. If I could help to spare someone else that ordeal, I was willing.

So, after ignoring my GPS, which led me to the wrong side of the hospital, I finally found the parking garage and headed inside. (If you’ve ever been to the Longwood Avenue complex of medical centers in Boston, you’ll appreciate that this was no easy feat.) A pleasant research associate greeted me and reviewed the study protocol, which I had read in advance, so I knew, approximately, what I was in for: a six-minute walking test to establish my baseline, followed by an ECG, an IV insertion, a blood draw, then being hooked up again to an ECG for a 20 minute MRI, followed by up to 10 minutes peddling a recumbent bicycle, followed by a contrast dye infusion and another 30 minutes in the MRI. Not a cakewalk, but still better than the invasive procedure.

Now, I’m no fan of MRIs, which are loud and claustrophobic, and I was trying not to get anxious, anticipating THE BIKE. Last time I did this, I lasted three minutes before I felt really awful, because my pulmonary pressures skyrocketed. I was hoping that my new medication, more exercise in recent months, and better diaphragmatic breathing would all help.

So I really appreciated it when one of the researchers kindly asked if I’d like some music while in the MRI. I requested classical. “What kind of classical?” she asked. Really? You get a choice? I went for Chopin piano etudes, a favorite, and some of the most soothing music I could think of on the spot.

The walking test was easy. They set up two cones in a hallway of the research patients’ floor, and I kept a steady pace, back and forth, for the full six minutes with no issues. Ever the A student, I was pleased to know I was among the fastest walkers in the study, so far.

Then came the MRI. Lots of equipment to attach and adjustments to make as I lay on the bed that slides into the maw of that noisy monster. And, of course, it took two sticks to get a working IV in my arm, which is always the case. The final step was a set of earplugs to lessen the bangs and beeps, plus the headphones, and adjusting the volume so I could still hear Chopin. I hung onto every note of the beautiful melody as they slid me into the MRI and the study began.

The piano etudes were interrupted every few minutes by a recorded voice that instructed me when to breathe in, breathe out, then hold until I could breathe normally again. Beeeeep-bang-bang-bang-rumble-bang-bang-beep-beeeeep-bang. Ahh, Chopin.

I was glad when they rolled me out of the MRI, until the research tech told me that we weren’t done, yet, because the research software had crashed. Help was on the way. Fortunately, rebooting the computer solved the problem—and we were able to pick up where we left off. “Three million for the research software, but we’re still on a Microsoft platform,” he quipped.

Finally the first phase of MRI scans was completed and they rolled me out again, this time for THE BIKE. No headphones for this phase. I was on my own. I peddled up to the tempo they needed to boost my heart rate and made it through the first two minutes of resistance without a problem. “You’re like a metronome!” said the research tech. “Most people slow down and speed up.” “We aim to please,” I said, focusing on my breathing.

“On a scale of 1 to 10, how difficult is this?” asked another member of the team. I had trouble answering the question as she raised the resistance to the next level. “A 4?” I answered. Honestly, it was hard to assess while I was trying to manage my breathing. After about a minute at that resistance level, I began to feel some mild chest pressure, which I reported. I was able to finish another minute of peddling, and then they ended that part of the process. A good thing, because I could sense that I was going to start tanking soon.

Headphones back on, first dose of contrast dye infused, Chopin playing in my ears, I began to relax again—until the banging started up. At one point, there was some brrp-brrp-brrping that almost drowned out the music for what seemed like an eternity. I began to feel a bit claustrophobic, but at least could feel my legs outside the machine and even, sort-of, see them. The piano notes that I could catch were my buoy.

Finally, after a second infusion of dye and more banging and clanging, I was done. I felt a little shaky when I sat up, with help, but was soon able to walk back to the changing room and get dressed. They got the data they needed, and I survived without that awful shortness-of-breath feeling. I did my bit for medical science, and, I hope, for someone else down the line who can avoid having a mask with a breathing tub clamped to their face and a heart catheter threaded down their neck while peddling THE BIKE.

On my way out of the hospital, I rewarded myself with a glazed doughnut for the drive home. And just as I got back on the Mass Pike, what should be playing on my Sirius XM station? Chopin, of course.

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: Accuray