Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

body-mind balance

Case Management

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I rarely cancel doctor’s appointments, even when I don’t feel like going. But I did that on Monday.

I was supposed to see my Boston Medical pulmonologist, the one who specializes in pulmonary hypertension, for a late afternoon appointment. This was a routine follow-up from February.

However, on Friday I had just driven into Boston for a midday appointment with my cardiologist, also a routine follow-up, this time from January. And since he has been my go-to for diagnosing my Type 2 pulmonary hypertension, and, thank goodness, the medication he put me on is working well, I just didn’t see the point of the Monday appointment. Why drive an hour-plus each way to wait and wait for a 15 minute appointment where I will tell the same story of my status and get the same (welcome, but not needed) reassurance from her that I’m doing okay, no changes needed? Especially if she can just read his notes in my chart.

This is not to say that I don’t value the pulmonologist’s time and advice. It’s just the schedule made the whole thing seem redundant. And Boston traffic during rush hour is no picnic.

I tried several times last week and again Monday morning to see if I could at least switch the appointment to telemedicine, but now that the pandemic is in the rear view mirror (thank God), that option is no longer readily available. So I rescheduled for September at a more reasonable time of day.

There are always stretches of multiple medical appointments in my calendar. Sometimes they are well-spaced, and sometimes they clump together, as they have recently. I still have another Boston Medical appointment for Thursday with my rheumatologist. Cutting out one more commute this week is the best way for me to conserve my energy while managing my own case. And to stay sane.

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: Sunguk Kim

And She Persisted

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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

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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

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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

Turnover

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Last Friday I met my new infectious disease specialist, Dr. A. He’s very knowledgeable and experienced, chief of ID at one of our city’s major hospitals. I’m relieved to have found him as my partner for managing all-too-frequent infections in my digital ulcers, since my former ID specialist, Dr. W, retired about six months ago.

Dr. W and I had an understanding for decades that I would keep a supply of antibiotics on hand, and whenever I felt the tell-tale pain and saw the swelling and redness of an infection, I would start the meds and let him know how I was doing. Finding another experienced specialist who would agree to the same arrangement was not guaranteed, and when Dr. W retired, there was no hand-off to a colleague. So, with some help from my PCP and a number of phone calls, I was able to get a consult with Dr. A. We clicked right away, and I’m very grateful to have him as my new partner in managing this disease.

Transitioning to new physicians has become a theme of the past few years. There’s no guarantee of finding the right match. So far, I’ve been lucky.

First, my long-time rheumatologist here at home retired. He was the one who saw me back in 1985 when my symptoms emerged and was my anchor for many years. He arranged upon his retirement for me to be seen by the rheumatology department chief for our health care provider. Then came my long-time rheumatologist at Boston Medical, a gem, who also arranged for a transition to his successor before he retired. While my relationships with my new rheumatologists are still a work in progress, they are both top notch and personable, which is an essential combination. And the major advantage of the switch has been a fresh review of my medical history and some necessary diagnostics.

Next to retire was our primary care physician, who had been my doc for all the years I’ve lived here, and was Al’s, too, since we’ve been married. This time, there was no transition plan in place. In fact it was downright chaotic for a few months, until we were able to get an NP through our provider’s excellent geriatric care department. She is wonderful, and best of all, the whole practice is based on house calls. Such a pleasure to see her, together, at home, several times a year.

Recently I also had to find a new ENT plastic surgeon, because the calcium deposits that lodge on the bridge of my nose have grown back to the point of needing removal. Last time I had this procedure was five years ago, but I’ve waited until the pandemic passed to take care of it. My prior specialist moved on from Boston Medical at some point during the pandemic, and so I met my new specialist a few weeks ago. He is also head of the department, so I’m good hands with him and his team, especially since the procedure looks to be a bit more complicated this time around. He almost tried to talk me out of it, given how the skin on my nose is not that flexible, but we reached a meeting of the minds and a solution involving a skin graft. So that’s next month.

This kind of turnover is inevitable when you’ve had a chronic disease as long as I have, for more than four decades. Many of my docs were close to my age or just a few years older when we originally met. We’re all getting older. Many of my new specialists are younger than I am, though not all.

But the pandemic has definitely made transitioning from one physician to the next more difficult. Many physicians have burned out from the stress and strain on our medical system. Others seek better pay and a more manageable work-life balance than they can find here in the Northeast, where I’m told that medical salaries lag behind other regions in the country. In the Boston area, GI specialists, in particular, are apparently in short supply.

Right now, I think I’ve rebuilt my team so all bases are covered. It will take more time to build the trusting relationships I had with their predecessors. Here’s hoping they don’t move on for at least the next five years.

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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