Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

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

Gut Feeling

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For months, now, my gut has been unhappy. Al and I both got the flu over the winter, and ever since, I’ve been having diarrhea most days, often several times a day. This is not a new issue, and I’ve discussed it at length with my Boston Medical rheumatologist, who has explained how scleroderma affects the intestine, slowing it down so that you get bacterial overgrowth. I have gained relief for decent stretches of time from antibiotics, particularly Cipro, which seems to solve the problem.

However, I recently saw my new GI specialist at Boston Medical—an appointment that took months to get—who ordered a battery of tests to get to the bottom of it all (no pun intended). He is very reluctant to prescribe Cipro, because he doesn’t want me to develop resistance to it. He prescribed a different antibiotic that is specifically for bacterial overgrowth in the intestine, but even with my insurance, it cost several thousand dollars for a few weeks’ treatment. I couldn’t afford it, and so I didn’t fill the prescription, and told him so. He understood.

Now I have to go through all the tests and get results before our next appointment. So far, a blood test ruled out Celiac. I have a breath test for bacterial overgrowth later this summer, which I was supposed to do in April, but I had to take antibiotics for an infected ulcer a couple of weeks before the appointment, and that violated the 30-day period prior to the test of no antibiotics. In August, I have an upper endoscopy. And last week, I did a barium swallow, a test I haven’t done in decades.

I figured that there might be some changes in the process or equipment since the last time, and there were. The barium drink wasn’t delicious, but it wasn’t as vile as I remembered. Which made drinking three-and-a-half cups of it tolerable. The most interesting part of the test was that I could actually see the progress of the barium through my digestive tract on the black-and-white fluoroscope and discuss it with the radiologist in real time.

To everyone’s surprise but mine, my first sip of barium got stuck in my esophagus, hanging there on the screen like a black, sagging water balloon. It matched the familiar sensation of swallowing bread and having it just sit there. I always drink a lot of fluids when I eat, and, of course, drinking water finally helped the barium to begin to trickle into my stomach.

The team began discussing various strategies to finish the test, because the plan was to see how barium traveled through my intestines, as well. Given my slow start, they were anticipating many hours. But fortunately, once I drank more barium (three cups!), everything started to move. When they checked the fluoroscope a half-hour later, the solution had moved well into my stomach and intestines. I was free to go home.

The test results were pretty positive. Apart from my sluggish esophagus, a known scleroderma issue for decades, everything else was fine. And once the barium passed out of my system (it took about two days), my gut settled a little. But not a lot.

I’ve lost about eight pounds since I had the flu—one way to get rid of some age-related weight gain that I’d just as soon as do without. But I don’t recommend this way of losing it. I’m hoping things will stabilize sooner than later. And that the rest of these diagnostics go well and provide some direction.

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: Mika Baumeister

Pharmacy Hack

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My extremely dry eyes, due to Sjogrens Disease, have been giving me a lot of trouble of late. No matter how carefully I manage my set of eye drops to keep them moist and clear, inevitably they begin to blur within a few hours, especially when I’m writing at the computer. It is incredibly frustrating, and I have yet to find the right combination and timing, despite excellent support from my dry eye specialist.

Managing all those eye drop prescriptions is another challenge. However, I am pleased to report that I’ve succeeded in finding a good Canadian pharmacy for one of my drops, which I’ve only been able to get when I or family or friends travel to Europe. EvoTears create a barrier to reduce moisture evaporation. They cost about €25 abroad and are available over the counter. Here in the U.S., they are marketed as Miebo® and require a prescription. The latest price I got via an online pharmacy with an insurance “discount” was $225.

I’ve been wary of ordering from a Canadian pharmacy for several years, ever since another medication I need that is very expensive got impounded by U.S. Customs. That experience led me to discover Mark Cuban Cost Plus Drugs, a domestic supplier that is really excellent. But they don’t carry EvoTears.

So I did some more research recently, and I discovered Northwest Pharmacy in Canada. And I just received my EvoTears in only a few weeks. Total cost: $60 plus shipping. The return address on the box was a New Zealand pharmacy. Apparently they use distributers around the world. It had a customs label, so it was properly packaged and identifiable by U.S. authorities. No issues.

A friend is traveling to Germany this summer who will pick up some more bottles for me, so I’ll be covered for the year.

It’s ridiculous that we have to go to such lengths to get affordable medications so necessary to our health and well being. Thank goodness for the internet. For all its flaws and risks, it is a mighty tool for making worldwide connections and purchases possible.

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: Shraga Kopstein