Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Touch

Back on the Block

· · 1 Comment

It was perfect weather for the beach on Sunday, sunny, in the 80s F, and given that we hadn’t made it to the Atlantic this season, we grabbed the chance for a day trip to Block Island. An hour’s ferry ride from the Rhode Island coast, it was our favorite vacation spot for years with our daughters, until everyone else discovered it, too, and the rents became ridiculous.

So Al and I try each year to get there on a Sunday. As luck would have it, however, given the beautiful weather, a lot of other folks had the same idea. Even as we left with plenty of time to catch the 11:30 ferry, we hit beach traffic that kept adding minutes to our arrival time. I took a GPS-recommended detour, only to have traffic get worse. Needless to say, it was not a relaxing arrival. When we finally got to Point Judith, there was no parking available, so we took a chance of parking in a four-hour spot and risking a ticket.

As it turned out, I had managed to read the ferry schedule backwards—the 11:30 ferry was the return ferry from Block Island—and the ferry to Block Island was actually departing at Noon. We got to the top deck of the very crowded boat with about 10 minutes to spare.

The island was hot and crowded. Still, we made the best of the afternoon, grabbing a good lunch at Persephone’s and then walking to the Town Beach, where we rented chairs and an umbrella. The tide was coming in, so when we took our walk up and down the shore, waves rushed and splashed. My pants got soaked, but I didn’t care, because the sand was cool and the surf, refreshing. And given the heat, my pants dried out quickly. We had our favorite dinner at the Beachcomber, Al got his ice cream at the Ice Cream Place, and we made the 6:15 ferry back, once again with about 10 minutes to spare. When we got to our car, well past a row of similarly parked cars with orange tickets on their windshields, ours had not been tagged. Hurray!

But the highlight of the trip came, surprisingly, on the ferry ride back. We were sitting on the top deck, once again, because there was no room on the other two decks. All of a sudden, people on one side started pointing and raising their phones to take pictures, standing on the benches to get a better view. I was able to get a glimpse of the phenomenon—a pod of dolphins, maybe a dozen or more, leaping through the water, heading toward the island. Everyone was thrilled, like a bunch of little kids. It was great. In that one moment, we were all in awe of Nature’s wonders. Everyone was smiling.

I’ve never seen wild dolphins before. Glorious. May your week be full of magnificent surprises.

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.

Down the Hatch

· · 6 Comments

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

Dappled

· · Leave a Comment

There’s a word in Japanese for the light that filters through trees:

Transliterated as komorebi (kō-mō-reh-bee), it is made up of the Japanese characters for tree, leaking, and sun—meaning, literally, the sunlight that leaks through trees. Komorebi refers to the ever-shifting way that sunlight filters through tree branches and boughs, creating dancing patterns on the ground and illuminating the backside of leaves. It’s one of my favorite things to discover when I walk outdoors. And I love the fact that there’s a Japanese word to capture that sensation.

So, when Al and I took advantage of perfect summer weather on Sunday, we went to Garden in the Woods, a 45-acre refuge for native plants in Framingham, Mass., and I tried to capture komorebi with my iPhone’s camera, as well as some delicate plants—and, of course, some turtles. It made for a lovely, peaceful afternoon. Here’s what I found. 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.

Down to Three

· · Leave a Comment

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.

 

Best Vacation Ever

· · 2 Comments

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.