Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

hand surgery

New Year, New Hands

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Last Thursday, I finished my 40th dive in the hyperbaric oxygen chamber. My grafts have healed. The Wound Center staff gave me a “certificate of completion” decorated with pictures—a fountain pen and typewritten words, a graphic for all the podcasts I listened to while bandaging up my fingers after my dives, an image of a Fig Newton, my favorite post-dive snack. Everyone signed with good wishes. I promised to come back and visit.

It seems amazing to be through. I still have bandages on my thumbs—the right as it continues to heal and the left, to protect a chronic pit that waxes and wanes. I’m moisturizing the grafts during the day, leaving them exposed to the air so the skin toughens up but remains pliable. I’m learning to interpret the sensations from the flap on my right middle finger. And I’m touch-typing away, thank goodness.

Christmas weekend, I took my daughters to see my sister and her family in the Midwest, my first trip since Al and I traveled to Norway in August. A good visit, anticipated for months, certainly not as strenuous a journey as this summer, but a bit of a psychological hurdle, given how my hands fell apart when we were abroad. I took extra care to protect my fingers, which paid off. No new ulcers, no damage. Just a rotten head cold on the way home, which mostly cleared by the end of the week.

So, here I am, starting 2018 with “revised” hands, all ten fingers. There is adjusting to do. I need to relearn what I can and cannot tackle, given that left index and right pinky are fused at the joint, right middle is stubby like a cigar, and left middle no longer bends at the partially amputated, grafted tip. The grafts have no nerve sensitivity, which requires mindful awareness of what I place where. Most of my fingers no longer move the way they used to. I’ve made an appointment for Thursday to see an occupational therapist in my hand surgeon’s office, to get some exercises to strengthen my grip, increase flexibility and discuss what I need to adapt.

Still, I’m feeling upbeat. I can do for myself again. Even temperatures here in the deep freeze for another week are only a temporary annoyance. Tucking hot packs into my wrist warmers staves off numbness. Staying cozy beneath the covers for an extra hour in the morning, now that I don’t need to push to get to the hospital, helps, too.

I could never have imagined, on New Year’s last, that I would be celebrating having all my fingers today. It’s just as well that we can’t see into the future. Too terrifying. If 2017 has taught me anything, it’s been how to stay very focused on the present, to measure progress in small steps, to be grateful for little victories that add up with persistence, to not let my fears keep me from taking reasonable risks for my health.

So, here’s to 2018. Bring it on. Just let me keep my fingers, please.

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.

Miraculous

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As of today, I have five dives left. My progress has been striking. I am touch-typing this post with five fingers between my two hands. Grafts on my right pinky and left middle finger have fully healed, as has the flap on my right middle finger. My left index graft is close to healed, though it’s taking longer because of a probable infection that is now under control. My right thumb is closing up, even as a second ulcer with calcium deposits opened in the tip last week.

Hyperbaric oxygen therapy notwithstanding, calcinosis remains one of my biggest challenges. My fingers are loaded with the little gray pits, and one is rising to the surface of my right index finger at just the wrong pressure point. But there is no cure for this, only patience and constant tending. Meanwhile, the worst of this marathon is behind me, thank goodness.

A friend asked me what I would do with all the time freed up in the morning, after the HBO ends next Thursday. Well, for one thing, I hope to get a little more sleep! It will be a pleasure not to have to head out to the hospital on a cold wintry morning at 7 o’clock. My goal is to use the regained three hours for my fiction writing. I’ve had to put this aside for the duration—filling the gap by listening to fine fiction via audio books while lying in the HBO chamber. Good to get back to my own creative writing, especially now that I can type again.

It will take some time to fully adjust to my “revised” hands. I’m still figuring out how much pressure I can exert on the two fingers that now have fused bones where knuckles used to be. I have next to no feeling in the grafts, so I have to learn how to interpret sensations deeper in these fingers—and avoid damaging what I don’t immediately notice.

The finger with the flap presents its own unique challenge: since the skin that was once the side of the finger is now wrapped over the top of the amputated tip, the nerves send confusing signals to my brain. The finger is also notably shorter and stubbier, which requires some readjustment to reach. I’m not quite sure what/where I’m feeling. So, practice, practice, practice, and my brain, I trust, will rewire.

But I remain amazed to have come through this eight month ordeal with functioning hands and ten fingers. This evening is the eighth night of Hanukkah. For me and my family, it is a most fitting way to mark my miraculous recovery.

I will be traveling over the weekend and taking a break next week from blogging. To you, Dear Reader, best wishes for a wonderful holiday season filled with joy, love, health and healing.

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: Element5 Digital

33

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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.