Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

managing chronic disease

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

Turtle Time

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For my birthday, a friend who knows me well gave me a copy of Sy Montgomery’s wonderful book Of Time and Turtles: Mending the World, Shell by Shattered Shell. I have a thing for turtles and their slow, measured pace through life.

Back when I ran a marketing department for a small college, I used to give my staff little turtle figurines as a reminder to take the time to do the job right, to avoid spending twice the time fixing it. They loved the concept and permission to go slower in a society obsessed with speed.

I can’t say I always follow my own advice, but I have a collection of turtles in my home office to remind me. From Montgomery, I’ve learned more about these prehistoric creatures, how they are gentle (even snappers are much less dangerous than their stereotypes), steadfast, and determined, somehow managing for millennia to beat incredible odds against their survival. Beyond natural predators, our modern world has compounded those risks with cars that speed across turtle nesting pathways, pollution and development that destroys habitats, and climate change that affects the gender of incubating turtle embryos, to name just a few.

Still, in their own plodding way, turtles persist.

Rescue organizations help, as much as they can, and their volunteers are incredibly dedicated. Montgomery takes you into this world of rescuers, in beautiful prose that inspires. In a chapter about her efforts to help release turtle hatchlings back into their native environment, near a busy highway that pregnant turtles must cross to lay their eggs, she writes:

Two kinds of time exist side by side: the frenzied, fleeting, harried time, rushing along like the cars on the interstate, and the eternal, cyclical, renewing time of the seasons. The turtles traverse them both. Following them to the world just outside the highway guardrails, we enter the embrace of the wild, beating heart of nature, escaping for a moment from the trap of transience.

As the pace of our lives urges us to move ever faster, faster, it feels so good to settle down with a wonderful book about turtles, downshift, and breathe. May you have a slow, peaceful, reflective day.

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.

A Day in the Life

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I’m heading into one of those periods when I have at least one and often two or more medical appointments each week for several weeks. Last week I met with our PCP to evaluate my sore back. Turns out it’s not a pulled muscle; it’s sciatica. Ugh. Treatment remains the same—lidocaine patches, OTC pain meds, heat or cold as needed, gentle stretching, no heavy lifting, rest, rest, rest. I’m slowly improving, able to sit and write at my computer again and drive longer distances, take walks. Sleeping soundly. All that is good, but I wish it would just go away.

My resilience was put to the test the next day, when I had to get up very early to drive in rush hour traffic to Boston for a 9:00 a.m. echocardiogram to assess my pulmonary hypertension, followed by a later morning appointment with my cardiologist. I did okay on the long drive, knowing from experience that I could lie down and doze during the echo, depending on how the tech handled the ultrasonic probe. Fortunately, he had an excellent, light touch, and I was able to rest for most of the half-hour procedure.

I found a cafe not far from the clinic and roused myself some more with an excellent breakfast. Then, after getting my sense of direction mixed up and walking a few blocks the wrong way (more tired than I thought), I realized my mistake and walked back to the clinic with 10 minutes to spare for my next appointment.

I was led to an exam room right on time for an ECG. But my cardiologist was backed up, so I was sent back to the waiting room for a while. Maybe a half-hour later, I was ushered into an exam room again, only to sit and wait for another half hour or so. This is when my iPhone is a necessary companion. I kill a lot of time in waiting rooms doing The New York Times crossword and other puzzles.

At last my wonderful cardiologist arrived, apologizing for the delay. Turns out there was a crunch of patients who showed up all at the same time. In any case, we reviewed my echo preliminary results, which were stable. Always reassuring. Pulmonary pressures were good. He noted, as he has previously, that I have some fluid around my heart, a bit more than is normal, which he attributed to some stiffening of the heart muscle due to scleroderma, which apparently impedes normal fluid absorption. Nothing to worry about, but important to track. He ordered some blood work to rule out any inflamation. We compared notes on sciatica. He’s lived with numbness in his left leg for years.

Then it was down to the lab for a blood draw. I had some other tests for my new GI specialist from a previous appointment that I could not complete at the time, so I took care of all that. The phlebotomist’s name was also Evelyn, so we bonded and chatted about our different nicknames (she goes by Eva and I, by Evie). I informed her that I have small, rolling veins, which can be an issue for getting stuck easily, and she used a butterfly needle, a good thing, because there were six vials to draw.

That accomplished, I drove home, which only took an hour, given no traffic midday, then stopped at the pharmacy to pick up a refill. By the time I got home, seven hours had elapsed since I’d left. I plugged in my heating pad and took a much needed nap, which enabled me to get some work done at my computer later that afternoon.

I’m always grateful for all of the excellent medical care. I’m also grateful when I can have some days off from all those appointments. Sleep is essential. Pacing is everything.

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: Jackman Chiu