Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Wise Counsel

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Sunday night I started my new steroid inhaler, Breyna. As I wrote a couple of weeks ago, my pulmonologist, Dr. A, who follows me for interstitial lung disease (ILD), felt this was necessary, given a slight drop in my PFT that was concerning. I held off until this week because I needed to discuss the whole situation with my lead rheumatologist at Boston Medical, Dr. T.

Getting the appointment was not easy. At first it seemed the nearest date was the end of July for an in-person visit and in August for telemedicine. But fortunately, Dr. T directed his assistant to get me in sooner, and so I was able to have a telemed appointment last Friday. We spoke for about a half-hour, and I was able to ask all of my questions about whether this PFT result was due to Sjögren’s disease, rather than scleroderma, and if so, what were the implications. I also needed to understand more about the steroid’s impact, how much more vulnerable I’d be to respiratory infections while taking a steroid, and if I needed to mask in public.

Fortunately, the answer to that the latter questions was no. The inhaled steroid, he said, acts like a topical dressing on an infection. It doesn’t get absorbed systemically. I should be fine with normal precautions.

But what about Sjögren’s? Does the fact that my dry eyes have gotten significantly worse this past year, and the data that my diffusion rate is a bit worse, does that mean I’m having some kind of flair-up? He explained that he has always viewed Sjögren’s as secondary to my scleroderma, but the only way to know if it has become a more significant factor is to do a biopsy, either of a salivary gland or a tear duct.

Usually, he said, those biopsies are negative, because you have to reach a certain evidence threshold of lymphocites in glandular tissue for a positive diagnosis. Other than knowing what we’re dealing with, the only real benefit of that information, if positive, is it would enable me to be eligible for some new Sjögren’s-specific medication that is going to be available in about a year. Up until now, there has been nothing to treat Sjögren’s other than to manage symptoms. I’ve taken Evoxac for decades to make more saliva, and I use several eye-drops to help with dry eyes. But it would be great to have something that actually treats the disease.

So, I need to find out more about the tear duct biopsy, if it risks more damage than it’s worth. If so, I’ll do the salivary gland biopsy. As Dr. A requested and Dr. T agreed, I’ll get an updated CT scan of my lungs and another PFT in the fall, to see if there’s any change due to the inhaler.

The most reassuring information he shared: in 17 years of practice, he has never seen a Sjögren’s flair-up. I may have hit some kind of tipping point, but there is no reason to suspect that all of a sudden my Sjögren’s is doing anything other than what it has done for decades, just plodding along and making my body age a bit faster.

I’ll take that as a win.

Over the weekend, I was in New York City with my younger daughter to see some wonderful art, and I noticed that when I walked on congested streets, the car exhaust made it a bit harder to breathe. Also, when I walked to my train platform at Grand Central, the heat and stale air affected my breathing. So, between that experience and Dr. T’s advice, I decided to start the inhaler when I got home. You have to be careful to brush teeth and rinse your mouth well after using the inhaler so you don’t develop thrush. Not a big deal, just one more part of my daily care ritual.

It’s too early to tell if it is making any difference, but I think I may be inhaling a bit more easily. Sure hope so.

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: Roger Bradshaw

And the Winner Is . . .

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And now, a detour from scleroderma and related complexities . . .

As I shared back in March, my World War I historical novel, Line of Flight, at long last has found a publisher, Köehler Books. Over the past couple of months, I’ve been working with their excellent team, preparing for publication on November 17. We went through two rounds of manuscript edits, which turned out to be a productive, painless process. In fact, the text remains largely as written. Kudos to my editor, Joe Cocarro, who caught some important issues with foreshadowing and other details that needed fixing. I was grateful for that and for the vote of confidence in my work (and for learning that when the word ‘then’ is used to denote order of actions, it is not preceded by a comma.)

Recently I have been reviewing text layout and cover designs by Catherine Herold. It’s wonderful to see my words shaping up into book format, and she has been very skilled at creating covers that realize my vision.

Now, here comes the fun part: You get to vote on your favorite cover design! We’ve narrowed it down to two. You’ll see a summary of the novel as well as the two choices in this link.

Your input matters! I really appreciate your participation.

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: Hkyu Wu

Back to Reality

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As is always the case when I come back from abroad, it all too soon seems like a distant memory. I am trying to retain the clarity and calm I experienced in Japan. But it’s been a challenging week.

Last Thursday I had my regular pulmonary function tests (PFT) at Boston Medical, then saw both of my pulmonologists—one who manages my interstitial lung disease (ILD) and the other, my type 2 pulmonary hypertension. Usually these visits are routine, but this time, one of the PFT results concerned my ILD specialist.

Over the decades, PFTs have gotten harder. Results confirm a gradual decline in my lung capacity and function, but not to a worrisome degree. But this time, my lungs’ ability to transfer oxygen to my blood through the capillaries in my alveoli (oxygen diffusion) has dipped a bit more. So my specialist wants me to start using a steroid inhaler to arrest any further fibrosis. What made this more startling was that he suspects my Sjogrens Disease, rather than scleroderma, is the culprit. This is consistent with the fact that I’ve had significant issues with dry eyes from Sjogrens that have worsened over this past year.

I left with my head spinning. Steroids in any form, long term, are nothing to mess with. The idea that Sjogrens is now the stealth agent totally surprised me. When I got home, I wrote to my lead rheumatologist, and I hope to discuss all of this with him soon. I had a routine appointment with my local rheumatologist yesterday and reviewed everything. He said if the lung issues are due to Sjogrens instead of scleroderma, then it will be more manageable. Also, apparently, there are some new medications for Sjogrens that are due to be available within a year. So that was also encouraging.

Still, it is a lot to absorb. I’m grateful that my medical team is on top of my situation and helping me to get medication that will enable me to do as well as possible. But I am still processing what it all means.

The only constant in life is change.

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: Getty Images for Unsplash+

Best Vacation Ever

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As a child, I used to watch a public TV program about Japanese brush painting, and I learned how to paint the images that the artist demonstrated. It has been a dream for decades to travel to Japan. And so, for two weeks in June, Al and I made that dream come true. Back home since Thursday night, after a phenomenal trip—strenuous, but worth every minute.

We flew from Boston to Montreal, stayed overnight, then made the 12-hour flight to Tokyo, where we stayed for a couple of nights in a ryokan, a traditional Japanese inn with tatami mats as flooring and a futon bed on the floor. Then it was on to Kyoto by the Shinkansen bullet train. Our accommodation there was a rented home in a family neighborhood, lovingly preserved and decorated. The bedrooms were up a narrow staircase hidden behind a sliding bookcase.

We spent five days in Kyoto, which included a day trip to Nara, the ancient capital of Japan where deer are sacred and roam free. Then we took a Shinkansen to Hiroshima, where we stayed in another traditionally decorated apartment in a residential neighborhood. Our time there included a powerful visit to the Hiroshima Peace Memorial Museum, which commemorates the victims of the atomic bomb attack on August 6, 1945. We also took a day trip to the nearby island of Miyajima, home to UNESCO World Heritage temples and shrines. Then we moved on by train and ferry to spend three days on the island of Naoshima, known for its art museums and galleries. On our way back to Tokyo, we caught a glimpse of Mount Fuji.

Yes, it was another of my super-charged itineraries. We saw exquisite gardens, ancient temples and shrines, museums, shops, street life, and navigated the food scene. Google Translate was a huge help, both for speaking with people and translating signs and other text.

I will be thinking about this trip for years to come. It was inspiring, transformative, and, yes, challenged my physical endurance. But I am so, so glad we went, as is Al. Here are some pictures. 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.

Yes, You Can Get TSA PreCheck Without a Full Set of Fingerprints

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Memorial Day weekend is over, so that means unofficial summer has arrived (even if it doesn’t feel that way on a chilly afternoon). Al and I will be traveling again soon, and I am looking forward to getting away.

In preparation, I was at AAA recently and noticed a sign for TSA PreCheck®. Unbeknownst to me, our local AAA can do those applications. I had always thought that I had to go into Boston’s Logan International Airport to apply, a major disincentive.

The main reason I had never applied, however, was that you need to be fingerprinted. With all my bandages and skin grafts on my fingers, I thought that was impossible, so why bother?

So I asked about it. And it turns out that the process can accommodate people with hand disabilities. Which had never occurred to me, but is both obvious and appropriate. I made appointments for both of us, and last Monday we went to AAA to apply.

To do the fingerprints, they use a huge tablet. You need to press your fingers onto the screen, and as long as enough of an image is captured, you’re all set. Even if your fingerprints don’t work, or you are missing the primary fingers they want to use (thumbs and index fingers), they can enter an explanation that by-passes the requirement.

In my case, thumbs were out (bandages), as was my right index finger (bandage), and the left index finger is too bent to lie flat on the tablet. But they were able to capture prints from my ring fingers and pinkies on both hands.

A few days later, we received emails that our applications had been accepted. Now we have our TSA PreCheck ID numbers, which I just have to enter on our airlines reservations. Who knew it would be this easy?

I’ll be taking a break over the next few weeks and will have lots to report later in June. In the meantime, be well, Dear Reader.

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: Arthur Mazi