Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

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.

 

Wise Counsel

· · 4 Comments

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

And the Winner Is . . .

· · 2 Comments

And now, a detour from scleroderma and related complexities . . .

As I shared back in March, my World War I historical novel, Line of Flight, at long last has found a publisher, Köehler Books. Over the past couple of months, I’ve been working with their excellent team, preparing for publication on November 17. We went through two rounds of manuscript edits, which turned out to be a productive, painless process. In fact, the text remains largely as written. Kudos to my editor, Joe Cocarro, who caught some important issues with foreshadowing and other details that needed fixing. I was grateful for that and for the vote of confidence in my work (and for learning that when the word ‘then’ is used to denote order of actions, it is not preceded by a comma.)

Recently I have been reviewing text layout and cover designs by Catherine Herold. It’s wonderful to see my words shaping up into book format, and she has been very skilled at creating covers that realize my vision.

Now, here comes the fun part: You get to vote on your favorite cover design! We’ve narrowed it down to two. You’ll see a summary of the novel as well as the two choices in this link.

Your input matters! I really appreciate your participation.

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: Hkyu Wu

Back to Reality

· · 2 Comments

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+