Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

managing chronic disease

No Clear Answers

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Back to another stretch of multiple doctor’s appointments. On Thursday I saw my rheumatologist at Boston Medical Center. I was back to BMC again for a visit to my GI specialist on Monday afternoon. Today it’s a drive to the South Shore to see my podiatrist. Then on Thursday, I go to the wound clinic at our local hospital to check in on my digital ulcers.

It’s a lot of appointments. It takes a lot of time to drive and wait and be seen. I have a great team. I just wish the visits were more spread out.

At Monday’s GI exam, we discussed all the diagnostic tests I’ve undergone in the past few months to figure out what’s going on with my gut. Turns out that I have normal motility in my small intestines, and the breath test for bacterial overgrowth thereof was negative, though it’s not the most reliable test.

Bottom line is that we don’t have any physiological evidence that there is excess bacteria in my gut due to slow movement of digested food through my intestine—which we had expected to find, a common problem in scleroderma, but apparently not my issue. So what is causing the chronic diarrhea?

We know that the gut microbiome is very important to overall health, my specialist explained, but there’s a lot we just don’t know. There are no definitive tests beyond what we’ve done to clarify what’s going on. So we’re down to trial and error. He offered me a free sample course of the very expensive antibiotic that I can’t afford, to see if it would help. But why do that if my gut is actually processing food with normal motility? So I asked him to recommend probiotics, and I’ll report back how that works.

And so it goes. I learn from my doctors, and they certainly learn from me. They are all well-versed in the research. But so much of what happens in scleroderma remains a mystery.

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: Bioscience Image Library by Fayette Reynolds

At Summer’s End

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Labor Day has now passed, alas. The school year has already commenced in our fair city. Once again traffic is heavier on the Mass Pike when I drive into Boston for medical appointments and other events, always a sure sign that vacation season is over.

Time for sweaters and jackets and warm pants. I still leave the bedroom windows cracked at night, but not as wide open as in recent weeks. The heat has not switched on, yet, but it won’t be long before I’ll need it to get out of bed in the morning.

I won’t miss this summer’s sweltering heat and humidity. But I will, as always, miss the comfort of being able to walk outside without multiple layers of clothing. I won’t miss blasting air conditioning in public spaces that triggers my Raynaud’s and dries out my eyes. But I will, once again, miss the long hours of sunlight and the ease of wearing sandals.

New England has been my home for more than 40 years, now, and I still love living here, despite the prospect of another cold winter. I will adjust, as always, to the seasonal shift into fall. I always revel in October’s colors, the stark light of late November, and the pristine blanket of winter’s first snowfall.

In praise of temperate climates, here’s a link to a recording of Antonio Vivaldi’s The Four Seasons. Even as I’ll grumble as sunlight dwindles, there is still much to be grateful for.

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.

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Surf’s Up

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I love the ocean. I wish we lived close enough to walk the beach every day. I find the rhythm of the waves mesmerizing, and the moist sea air really helps my dry eyes, nose, and mouth due to Sjogrens.

Recently, I discovered a meditation technique called Ocean Breath, or Ujjayi Pranayama. It basically involves slightly constricting the back of your throat as you breathe in and out, mimicking the sound of waves rushing in to shore and receding. Here’s a link that describes the practice.

As always, there’s a caveat. If you have heart or lung issues, check with your doctor, first.

I’ve been using a guided meditation on the HeadSpace app, which I find extremely helpful, that varies a bit from the above instructions. It takes practice, but it’s quite soothing. You can do it any time of day or night. Great for easing into sleep, waking up in the middle of the night and finding your way back to sleep, or just whenever you need to take a stress-reduction break.

Breathe well.

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: KOBU Agency

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.