Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

managing chronic disease

Down the Hatch

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Over the past few months I have endured a series of diagnostic tests to figure out the cause of my chronic diarrhea. The basic hypothesis is that my scleroderma has caused waste to move more slowly through my gut, leading to bacterial overgrowth. But my GI specialist, Dr. H, has been thorough, trying to rule out other issues, as well.

So, first I had a celiac test. Negative. Then I did a barium swallow, which confirmed that I have strictures in my esophagus (no surprise—I’ve felt food get stuck there for years), but everything else was working just fine, thank you. Then I did a diagnostic which involved swallowing a lot of sugar water and testing my breath periodically over three hours to check for signs of bacterial overgrowth. That one came back negative, though Dr. H suspects it’s still an issue.

Monday was the last test in the series, an upper endoscopy. I haven’t done this in years. We left early for Boston in rainy weather, but still made it 45 minutes ahead of time. Fortunately, that meant they took me in early, as well. Given that I usually time my visits to the nanosecond, this was evidence for rethinking my habits a bit.

This unit at Boston Medical is dedicated to outpatient endoscopy procedures, and I was in Bed 30. While prep felt a bit like being on an assembly line, the nurses were cordial and very efficient as they checked my vitals and inserted an IV line. Even as the repetitive questions seemed endless (how many times do I have to confirm that I am indeed the person named on my wristband?), there was a benefit. Somehow, between check-in and prep, Al’s phone number was recorded incorrectly. Since he was driving me home, that needed to be fixed. Glad we caught the error.

After I met the anesthesiologist and signed a consent, I only had time to do the Monday New York Times Crossword, Connections and Strands puzzles on my phone (my morning breakfast ritual) and they were ready to wheel me into the exam room, a half-hour ahead of schedule.

Dr. H did the procedure, which I appreciated. The last thing I recall after they hooked me up to the IV and various sensors, was telling them, when they put the oxygen cannula in my nose, that I get bloody noses easily. Then I woke up. My throat was sore. Dr. H had gone the extra mile, as he told me he might, and stretched the strictures in my esophagus. This he did by inserting a long, thin balloon, which he inflated and then removed. Hopefully this will ease swallowing. For the most part, everything else looked normal.

After some ginger ale and graham crackers, I was steady enough on my feet to get dressed and walk with the nurse to find Al in the waiting room. It was still pouring on our drive home, but we got back around Noon. Some food and a nap helped, but as I write late Monday afternoon, I’m still groggy. The swelling in my throat is easing slowly.

So, even if we still don’t have solid answers to the diarrhea question, at least it may be easier to eat. Worth the hassle. Glad it’s over.

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: Ahkmet Yüksek

Down to Three

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One of the best things about summer is that my finger ulcers tend to heal. For months I was dealing with as many as six bandaged fingers, changing those bandages twice daily. It took at least a half-hour each time I changed dressings and used up a lot of bandages.

Now, happily, I’m down to three: both thumbs, which are always a problem no matter what time of year, and my right index finger, which is nearly healed up. The thumbs are an issue because they contain so many calcium pits. If you look at an X-ray of my hands, each thumb contains a long chain of calcinosis. The index finger had a big piece of calcium that finally popped out about a month or so ago, then another fragment emerged last week. But it’s closing.

All those hot, hot days in recent weeks have been really helpful, even if the heat is exhausting. Thank goodness.

I see the team at our hospital’s Wound Clinic about every two months, and they were impressed. They also gave me a kind of crystalline medical grade honey it to try. It helps to break down the thick tissue that forms on the inside of my thumbs. You just have to be judicious using it, because I have found in the past with medical grade honey that it can make things worse if you overdo it. But it sure smells good.

So, here’s to summer. I hope those of you in the northern hemisphere are enjoying it, despite the wildfires, intense storms, and heat waves. We need to savor it while we can.

Image: Alexander Mils

And now for some shameless self-promotion. . . . My sincere thanks to all who participated in the cover poll for my forthcoming novel, Line of Flight. More than 400 people voted, and this cover won by a large margin. I’m thrilled, because it was my favorite, too.

And now I’m pleased to announce that my book is available for pre-order. It publishes on November 17, this fall. Pre-orders help the book to get higher rankings on online seller sites, so more people find it. Here are the details and links for pre-orders.

Thanks for your encouragement and support!

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.

 

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