Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

managing chronic disease

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We had our first snow of the season on Saturday—a fluffy powder that transformed trees to Battenberg lace. The flakes were too tiny to reveal intricacies as they speckled my brown coat on my walk to and from our synagogue for Shabbat services. By evening, at least four inches covered Al’s car in our drive, and our once-plowed street was white again.

But, no matter. It was our 33rd wedding anniversary, and we would not be deterred from dinner at our favorite restaurant. Snow powdered the night sky as Al carefully drove us along semi-cleared streets. A few other intrepid New Englanders were out and about, as well, and the restaurant was packed when we arrived. We watched the snow blowing beyond the windows as we toasted another year together, a challenging year dominated by my deteriorating hands, but a year that brought us closer.

By the next morning, the sun was high and snow dripped from trees and eaves. We enjoyed a great brunch out, then drove into Boston for a powerful performance of Hold These Truths, a play by Jeanne Sakata, at the Lyric Stage Company. It’s based on the true story of Gordon Hirabayashi, who challenged the internment of fellow Japanese American citizens during World War II. Inspiring and sobering, well worth seeing, especially now.

I was still thinking about the play on Monday as I set out to the hospital at seven o’clock for my HBO therapy. By the time I left, nearly half-past eleven, the temperature was mild, much like that day so long ago when Al and I married.

It was my second marriage, his first. I had sewn my wedding gown, hand stitching nine yards of lace to the tulle veil. The rabbi who introduced us performed the ceremony. We were giddy and full of optimism as we drove to Cape Cod for our honeymoon. One misty night, as we walked Nauset Beach, the sand sparkled with each footstep and the sea froth glowed. It was ghostly, mystical. It gave me chills.

Later, we learned that we had witnessed the natural phenomenon of sea phosphorescence, caused by tiny sea creatures, or, perhaps, some form of sea algae, with their own inner light. But I still think back on that night, when we had no answers and only astonishment, as filled with an eerie, magnificent magic.

About a month later, we learned that I had some form of autoimmune disease. Three years beyond that, I was diagnosed with scleroderma.

I have written before in these posts how a complex, chronic disease becomes the third—unwanted but ultimately accepted—partner in a marriage. Sometimes it fades to the background and can almost be forgotten. Other times, it clears its throat with a rough cough, demanding attention. Then there are times, like this year, when it roars and dominates.

Thirty-three years is a long time to live with an unwelcome guest. Throughout, Al has been by my side, steadfast, the one who hears and sees the worst of it and always reminds me that as long as we have each other, we’ll be okay. The excitement I felt on our wedding day may have all too soon been supplanted by the fear and anguish of a terrifying diagnosis. But love and trust, tended over decades, have proven much stronger than any disease.

Outside our window on Monday night, the streetlamp casts a stark, inky shadow on the snow from the sign Al placed on our front yard a few weeks ago: “Hate Has No Home Here.” He has given more signs to our neighbors, who were pleased to accept them. A few have placed the signs already; he hopes to create a little oasis of radiance on our street. Wednesday evening, at his initiative, we will help serve meals at a homeless shelter nearby.

This is the man who left a trail of sparkles in the sand on a misty night, as a ghostly surf pounded the shore. I had no idea, then, how truly lucky I was.

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.

Image Credit: Luke Hodde

Tradeoffs

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After two dozen dives, my hands continue to heal, thank goodness. I’m typing this post with a few fingers on each hand, instead of poking away with a stylus.

But I am also beginning to experience one of the side-effects of HBO therapy—blurred vision. For more than a week, I’ve noticed that road signs look a bit fuzzy when I’ve driven home from the hospital. Then, last week, I realized that my computer glasses no longer were the right correction. Instead, I needed to wear my regular bifocals and sit a bit farther back from the screen.

Over the weekend, to my dismay, things got more blurred. I can certainly see, but when we went to the movies Saturday night, the screen was a bit fuzzy. I did some long distance driving on Sunday to be sure I could still handle it, and I could—but needed Al’s help to read signs.

Fortunately, I still have my most recent pair of glasses, which have a stronger correction for nearsightedness. As I’ve discovered over the past few annual check-ups at the optometrist, aging can improve vision of distant objects. So using my old prescription has compensated for the worst of the problem—for the time being.

I’m told it could continue to get worse, in which case I’ll need to get a new prescription and a pair of cheap glasses to tide me over until I finish my dives. Based on my discussion with the team last Thursday, we’ve agreed to apply for insurance coverage for 10 more sessions, to be sure my grafts heal fully. That will take me into the last week of December.

The vision issues, like my hearing issues that have required temporary ear tubes, should resolve within six to eight weeks after I finish diving. I’m hoping it doesn’t get worse. But it could.

Even still, I’d rather stick with the treatment. Too much is at stake for healing my hands, especially as the weather gets colder. If I have to get driving glasses for a few months, so be it. Fortunately, I had a previously scheduled eye dilation appointment with my optometrist last week, and everything else is fine. As for my farsighted correction, I’m better off with my current prescription. I guess I’ll be switching back and forth.

Miraculous as the HBO therapy has been for me, nothing is ever that easy.

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.

Image Credit: Clem Onojeghuo

Baking Bread

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As of today, I am two-thirds of the way through my HBO treatments: 20 dives down, 10 to go. Last week’s mishegas about another potential infection was doused effectively with medical grade bleach soaks for the recalcitrant graft and a visit to Dr. S, who reassured me that the finger looked fine. Thank goodness!

Meanwhile, I continue to make more progress. Each day, the edges of the grafts pull a little farther away from surrounding skin, which is what they are supposed to do as new skin forms beneath. My fingers feel more able, despite missing tips and odd shapes.

I didn’t cook Thanksgiving dinner (Al’s department—and very good it was, too), but I did make the stuffing that we baked separately in the oven (main course was pecan-crusted salmon). This is one of the first times in about six months that I could tolerate stirring contents of a hot pan. Previously, the rising heat and steam were very painful to my exposed, over-sensitive wounds. Not to mention, I couldn’t hold the spoon.

My biggest accomplishment in the kitchen, however, was finally being able to bake bread again. It has been my practice for years to bake fresh challah for our Friday night Shabbat meal. I have a great recipe from a cookbook that my sister gave me nearly 30 years ago, and I’ve been making it since Mindi was a toddler who relished punching down the risen dough each week.

It’s the highlight of our Shabbat dinner, as well as a source of pleasure and pride for me to provide my family and friends with delicious homemade bread. But my hand debacle has made this favorite, meditative task an impossibility since summer. Al took over baking after my surgery and has become quite adept. Still, I missed doing it myself.

So this post-Thanksgiving Friday, as I was hanging out in the kitchen with my two visiting daughters, I decided to see if I could once again slip my fingers into a pair of de rigueur disposable rubber gloves, essential for any handling of raw ingredients—and, voila, to my amazement, they fit over my bandages without any discomfort! I proceeded to proof the yeast, pour flour, sugar, salt, oil and eggs, plus the yeast and warm water, into our old Cuisinart, mix the dough and pull it out onto the floured bread board.

And, as my daughters gave approval and encouragement, I kneaded the dough by hand. This is my favorite part of baking bread. There is something so magical and satisfying about feeling the dough transform from a sticky mass to a smooth, soft, elastic whole. My hands had not lost too much strength or touch. Into the oiled bowl the dough went, covered with a clean towel, to rise.

I punched it down for the first rising, but Mindi was getting organized to drive back to Boston by the time the dough had doubled in size a second time. “Do you want to punch it down?” I asked. “It was a little hard for me because my fingers don’t bend quite right.” She smiled, then proceeded to expertly punch all the air out of the dough. Still a special moment to share.

Later, when the challah came out of the oven, I sent her a text with a photo.

“Ta-da!” I wrote.

“Very nice!” she responded.

Yes, very nice, indeed.

P.S. This post is my 300th entry in this blog, When I began writing in January 2012, I had no idea where what has become an online journal of my life with scleroderma—and just life, which is really the point—would take me. More than 200,000 words later, I’m still discovering. Thank you, Dear Reader, for sharing the journey, and for your encouraging and thoughtful comments along the way, which keep me going.

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.

Fingers Crossed

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So, now things get a little more complicated. Last Thursday, when the Wound Center team checked my progress, the vascular surgeon thought that my left middle finger tip was colonized by an opportunistic bacteria common in wounds called pseudomonas. What I had taken to be some incidental spots had turned a pale green, which she said was a tell-tale sign. No pain or other issues, so I did my dressings and then checked it again that evening. It seemed to have spread more across the upper layer of the graft, which is dead skin.

Next day, I told the team, but no ID specialist was available to look. So, they scheduled a visit with the covering doc (mine is, of course, away for the week of Thanksgiving) for Monday morning. Meanwhile they recommended soaking the tip in a medical grade bleach. After just a minute, I was able to remove all of the green growth with a cotton swab. Powerful stuff.

They gave me some to take home and use again on Sunday. This time, nothing came off, and I couldn’t really tell if the discoloration was white or something else. Monday morning, I came in a little later for my HBO therapy, as planned, to give the ID doc time to look at the finger before my dive.

However . . . due to some miscommunication, when paged he said he’d never seen me before and didn’t know why he was being asked to consult, and went ahead with regular appointments. Aargh! More calls back and forth with the nurse who’d set up the appointment for me, and she got him to come later, after my dive. Of course, the wait took an extra hour.

He was apologetic when he came, very nice, thoughtful, accompanied by two students. However, he could not give me any firm answer about what may or may not be discoloring my graft. Only way to really know, he said, would be to debride the finger and do a deep tissue culture—which, of course, would mean removing the graft. And antibiotic treatment at this point could involve IVs, which I really don’t want. Not going there, not now, we agreed. Better to stick with the bleach and keep close watch. So long as I don’t have pain, any redness from cellulitis, swelling or fever, there’s no reason to do more.

After he left, the nurse suggested checking if I could see my hand surgeon before the holiday, to get his input. Fortunately, since they know me well in his office, his medical assistant squeezed me in for Tuesday afternoon, the only day he’s in this week. Good relationships really count.

I was not in a great mood Monday afternoon. But then I took a step back. After all, a surface culture on my opposite middle finger, the one that was actually weeping goo a couple of weeks ago, had tested positive for pseudomonas, and nothing came of it. The antibiotic I’ve been on, true to my ID specialist’s prediction, took care of the infection.

Plus, my open wounds were growing all sorts of stuff prior to my first surgery, as demonstrated by cultures done at that time. None made any difference in my outcome. Best to keep vigilant and monitor symptoms rather than fret over what-ifs, or do unnecessary procedures that would make matters worse.

I’m just grateful that I’m being monitored so closely by experts and not dealing with this all on my own. I’m also grateful that I continue to make more progress—this past week, I was able to fill my car with gas, lift a mattress to make a hospital corner, stir onions in a pan on a hot stove, and begin to write by hand again. That’s what I’ll be focused on this Thanksgiving.

And so, Dear Reader, I hope you have much to celebrate this holiday, as well. And for all of us, here’s to good healing and good health.

P.S. I’m happy to report from my Tuesday appointment that Dr. S thought my finger was fine. He said that grafts are “biological dressings” that protect new skin growing beneath. Not surprising that something could grow on the surface, as well. Given no worrisome symptoms of an infection, I should just keep doing what I’m doing. Other fingers continue to look good, in his opinion. Thank goodness—and it pays to remember that specialists know their specialties but can misinterpret what falls under another’s specialty! Seventeen dives and counting.

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.

Image Credit: Nathan Anderson

Maiden Voyage

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Hallelujah! I can drive again long distance on my own. Last weekend’s hour-plus experiment with Al as my backup gave me the confidence to try going it alone this week. So on Friday, after finishing up my morning HBO therapy, doing all of my bandages and putting on my makeup (not allowed inside the chamber), I drove an hour into Boston to see my favorite hairstylist for a good cut.

Now, to some it may seem silly to drive that far just to get a haircut. However, this stylist has been doing my hair for more than 15 years, beginning when I was commuting to work near Boston. She is very gifted, precise and understands exactly how to make me look my best. Given the way that scleroderma has changed my face over the years, having a great haircut is much more than an indulgence. It is one of the few ways that I have control over my appearance. I always walk out of the salon feeling wonderful.

The last time I had seen her was 10 weeks ago, more than twice the amount of time that I usually allow to lapse between visits. That trip was courtesy of my younger daughter, who was in town for a visit and drove me in for my appointment, four days after my first surgery. I wasn’t even sure until the night before that I would be able to make it, but was very glad I did.

Now, more than two months later, my hair was flopping, unruly and difficult to manage. Whenever I looked in the mirror, I felt that I looked old and weary. The hand ordeal was taking its toll.

Thank goodness for the HBO therapy. After 10 dives, not only are my grafts healing, but also my energy level has improved significantly, to the point where I felt confident enough to make an appointment. Originally, I had planned to take the train to Boston—time consuming and pricey, but still a good option. Then, when I realized last Sunday that I could actually handle the car on the highway again, I was determined to drive into the city.

Complicating my plan was a cold snap. We’ve been enjoying unseasonably warm weather here in Central Massachusetts, but late fall returned with a vengeance at the end of the week with a freeze overnight and 30°F temperatures, plus stiff winds during the day. I didn’t care. I added extra layers and figured out where to park that would enable me to take a break from the weather on the way to the salon by eating lunch at a favorite restaurant.

My visit did not disappoint. My stylist, who is one of the only women I’ve ever met who looks fantastic with magenta hair, gave me a hug and set to work, skillfully trimming at least an inch, reshaping my graying mop. As she snipped, we caught up on health, family and life in general. When she finished putting the last hair in place, I was grinning. What a relief! I felt like myself again.

The 10 minute walk back to the car was bitter cold, but I was glad that I had driven and not taken the train, which would have required waiting on a very cold platform. The drive home in rush hour on Friday afternoon was long and tedious, and I was happy to walk into our warm house, where Al was preparing Shabbat dinner. I had to lie down for a half-hour, because I was very tired, and my hands were a bit uncomfortable from all the driving in stop-and-go traffic.

But it was well worth it. I no longer feel that I look like a patient. I no longer feel confined.

On Sunday, I drove into Boston again, this time for brunch and a movie date with my eldest daughter. We had a great time together, and when I came home, I still had plenty of energy to sit down at my computer and write this blog post. On Monday afternoon, I will get in my car once again after my HBO therapy and drive into Boston to see my rheumatologist at Boston Medical Center for the first time since my second surgery. The last time I saw him, after my first surgery, Al had to take off from work to bring me. Now, I can do it myself.

Despite all this progress, I know I can’t overdo. Three round trips in four days is plenty for the next week. Driving after the hyperbaric chamber is more tiring than driving on the weekend when I’m rested. Still . . . it feels really, really good.

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.

Image Credit: Alex Iby