Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Smell

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.

 

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 flare-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

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.

Until Next Year

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Last Wednesday night marked the beginning of Passover, when we always host the first seder for our extended family. Al’s first cousins always host the second seder. This is a family tradition that dates back to Al’s mother and her youngest sister, who alternated hosting the two festive meals every year, when we join Jews around the world in retelling the Exodus story.

Even though we share the meals between the two families, it’s still a lot of work. My hands were in rough shape as the holiday approached, with six fingers in bandages, due to persistent ulcers and calcium bits that had chosen just this time of year to travel up to the surface and hang around without popping out. This feels like having grains of sand stuck under your skin. No fun.

Fortunately, our younger daughter had already planned to come up from Philadelphia to help out with the cooking for three days. Yes, it takes that long, because I can’t help myself. I always plan a very special meal with lots of courses. Even when I’ve mastered all the recipes and know how to pace myself with the meal prep, it’s just a lot of work.

So, we cooked and shopped and cooked together for several days. She did the lion’s share of the chopping and mixing and frying and baking, while I directed and handled a variety of smaller details that were essential for the final meal. Here’s what we made: Egyptian charoset, which is a mixture of dates, raisins, ground nuts and sugar; hard boiled eggs; pickled salmon (a family favorite, as an appetizer); Egyptian potato soup; spinach patties; roasted carrots, beets, and turnips; a salad of oranges, avocados, red onions, arugula, and a cinnamon vinaigrette dressing; apricot sponge cake, chocolate chip meringue cookies, strawberries, grapes, and chocolate for dessert. And, of course, there was plenty of matzah, including gluten free.

It was a hit. Worth all the effort. We had fun cooking together, though I was quite tired afterwards.

Learning how to ask for and accept help is a crucial part of living with scleroderma. I’m very grateful to our daughter for being so willing to step up and keep the family tradition going. Until next year . . .

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.

Making Waves

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On Sunday, Al and I went to one of our favorite places, Block Island, an hour’s ferry ride off the Rhode Island coast. We used to vacation there when our daughters were young. Unlike just about anywhere else I can think of, the island remains a time capsule. Many of the same weathered buildings line the harbor that were there on our first visit 34 years ago. Dunes shift, as they are wont to do, but nearly half the island is protected open space, which has significantly preserved its unique charm. It is a comfort, a respite, a little slice of peace.

At our favorite beach, the sand bore traces of Hurricane Erin, which passed by the island late last week. It was packed down much farther from the shoreline, evidence of a very high tide. We had seen videos of the large traditional ferry (as opposed to high speed) arriving last Wednesday evening, rocking side to side at 45 degree angles as it neared the harbor. By Sunday, there was a bit more chop for our ferry ride than usual, but nothing truly remarkable.

Surf pounded. Little kids ran up to the wash of waves, screamed, and ran back, then raced toward it again. Swimmers flung their arms in the air as they jumped over breakers. Young and old dug moats and built sand castles. Farther up the beach, dogs romped. Paddle balls pocked back and forth. We didn’t find any sea glass, a favorite quest, but I collected a handful of smooth oval rocks of various hues to bring home.

It felt like a normal, relaxing, sunny day at New England’s Atlantic coast, at the end of vacation season. Some public schools have already started, so the crowds were thinner. At colleges and universities across the country, freshman have already arrived for orientation.

Which was the case this past Thursday at Villanova University near Philadelphia, where our younger daughter works. But that first day of freshman orientation was anything but normal.

Toward the end of Thursday afternoon, Al and I were at a celebratory event at our public library, marking the success of the first anniversary of a pilot project to plant a Miyawaki Forest in what was once a section of parking lot, a project I have been very involved in. I was chatting with a student from Rutgers University who had driven up from New Jersey to learn what we had accomplished, when I received a text from our daughter at 4:41:

Mom, I’m currently okay, but I need to let you know there’s an active shooter on campus.

I handed my phone to Al. We left immediately. As soon as we got home, I searched on my computer to see if I could find out any more details. Our daughter, who was barricaded with her boss and another co-worker in the boss’s office, relayed what little information she had—that the shooter may have been at a Mass for new students, that he was now inside the law school at the other side of campus, which was surrounded by law enforcement. That no one knew if anyone had been shot.

I didn’t know what to do. It didn’t feel real. But it was. What do you do when your cherished daughter is hiding with her coworkers from a maniac with an assault rifle, and there is no way you can protect her? I stared at my computer screen. I did some mindless work, just to do something. I texted some friends. I waited for the next text from our daughter.

Then I fell back on my journalism skills and began scouring the internet for whatever I could find that might help her and her coworkers. I checked CNN. No useful information. I found a few more details at the Associated Press, a little at The New York Times. The Philadelphia Inquirer reported that paramedics had arrived, along with police from the Tri-state area. There were video clips of students fleeing, of cop cars with flashing dome lights, of armed police approaching the law school, of snipers on rooftops. There were photos of the university green where freshmen and their parents had gathered in rows of white chairs, now empty, with white programs littered about. It was surreal, and all too numbingly familiar at the same time. Then I found a live news feed from the local ABC affiliate and passed that along. And kept finding reasons to check in. She, too, kept me posted, though news was sparse. We both knew this could go on for hours. We both hoped that the gunman would be caught soon.

About an hour-and-a-half into the crisis, she sent me another text, this time an official notice from Father Peter Donohue, Villanova’s president: There was no shooter. There were no injuries. The whole episode had been a cruel hoax.

Immense relief, all around. We were all so grateful no one was hurt, at least physically. The emotional trauma, though, is real. These are students who have spent all their years in school with active shooter drills and threats. And now, this, on what should have been a triumphant day of beginnings. And to top it off, a similar hoax took place earlier that day at the University of Tennessee in Chattanooga, a second hoax was called into Villanova on Sunday (this one affected a single dorm and was debunked in 40 minutes), and also on Sunday there was a similar incident at the University of South Carolina in Columbia. What kind of person concocts such evil schemes?

Of course, in this day and age in the U.S. of A., none of it topped the headlines. No one killed. Nothing to report. We have become so inured to this insanity and so inundated with political madness that a series of active shooter hoaxes at three universities at the beginning of the academic year merits only stories buried on websites.

Our daughter finally made it home two hours later, after waiting for security to sweep their building to be sure nothing had been missed, after Father Peter gathered the community twice, first to reassure everyone there was no danger, and again to finish the final prayer of the Mass that got interrupted by the crisis. We’ve talked numerous times, since. She is doing as well as anyone could, back to work the next day. Thank God.

Which is one of the main reasons why I really needed a trip to Block Island on Sunday, with its weathered buildings, its familiar beaches, its fresh fish dinners and sweet ice cream cones. I was able to relax for the afternoon, though I found my mind sifting through what had happened. I began to formulate this blog post. I studied myriad footprints, big and little, pressed into the hard-packed sand from hurricane-driven tides, and wondered about those children, screaming in mock fear of the waves. What would become of them in their journeys through school?

I wish we really could step back into the more innocent time the island conjures. But we can’t. We are here. We live in a dangerous, violent world, at a crossroads in the history of our nation’s democracy. It feels overwhelming to me. Then I draw on my experience these past few years, helping to create a dense, small forest next to our public library that promises to be an innovate way to ease summer’s intensifying heat in congested neighborhoods with no trees.

Our community came together to plant that forest. We had no idea when we embarked on this project that it would draw so much interest and inspire students and other communities to learn more and plant more, too. It’s essential to remember—I keep reminding myself—that most people in this world are good, honest, peace-loving people who want to nurture their corner of this planet. Even the smallest act of joining together to solve one problem for the betterment of others can create ripples that grow into waves of possibilities for the greater good. Doing my best to maintain that focus, imagine what could be, and work toward it one small step at a time, rather than get mired in all the darkness, is my only way forward.

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.