Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

mindfulness

How’re Y’all Doin’?

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Punxsutawney Phil may have seen his shadow last week, predicting six more weeks of winter (of course, technically, there are always about six more weeks of winter after Ground Hog Day). But Al and I took a break from freezing cold at home and headed south Wednesday night, landing in New Orleans for a long weekend. On Thursday, we were walking around without coats. Even when the weather dipped into the mid-50s, it was still welcome, compared to Massachusetts.

I’d been imagining this trip for several years as I worked on the first draft of my novel. Now that I’m starting revisions, I need to know more about my protagonist, who immigrates from France to New Orleans as a child in the 1870s. So the plan was to mix research and fun, to escape winter’s frigid clutches and celebrate my healed hands. And celebrate, we did.

NOLA is known for its incredible cuisine and did not disappoint. The jazz was great, the art provocative, the neighborhoods intriguing. Most people we met were welcoming and went out of their way to be helpful. Strangers looked us in the eyes and greeted us with a friendly “How’re y’all doin’?” as they passed us by. We caught Mardi Gras beads flung from parade floats (celebrations fill the month leading up to Fat Tuesday), noodled around stores and art galleries, walked and walked and walked. Our Lyft drivers told us about life in their home town and their experiences during and recovering from Katrina. On Sunday morning before we left, we strolled along the banks of the mighty Mississippi in Crescent Park and watched a sky blue freighter steam slowly past.

My research included an immersion in selected materials at the Historic New Orleans Collection, a walk through the Hebrew Rest Cemetery, a look at the city’s oldest hospital, rambles through the Garden District and Faubourg Marigny neighborhood to photograph the many and varied styles of housing. I thought about light and heat and immigrants and masks.

Saturday evening, we discovered a vintage costume shop, filled with bling. As Al shopped for the loudest tie he could find for Purim (a Jewish holiday with its own carnival vibe), I scanned the racks and discovered a beautiful beaded overblouse. I tried it on. Lovely. But when would I ever wear it? I left it on the rack, and we went to dinner across the street.

Good as the meal was—outstanding Middle Eastern food—I wondered. Why not? If the store was still open when we finished, I said to Al, I’d like to go back. As we walked up to the door, the owner and her clerks were about to lock up. But she welcomed me inside. “You need to make your own festivities,” she said as she wrapped the overblouse in white tissue paper and placed it in a purple plastic bag.

Even with the freezing temperatures here, I’m glad to be home. We packed a week’s worth of touring into three-and-a-half days, I was fighting a cold, and I’m tired. But it was well worth every minute. My hands held up. No infections. Many sights and ideas to mull. Make your own festivities, indeed.

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.

Sideways

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I had my first visit with my new occupational therapist last week and learned a few things. I learned that it takes about 18 months for your nerves to rewire after the kind of surgery I’ve undergone on my hands—but that most of the change happens in the first 6 months. I learned that my skin grafts will never have full sensation, although I can sense more than I realized. And I learned that I’m not imagining how the skin flap on my middle right finger is sending confusing signals to my brain about what I’m actually feeling and how my finger is oriented. More on that in a minute.

My OT works in my hand surgeon’s office, so she has a ton of expertise when it comes to my specifics. This is a great blessing. She explained that even if some of my nerves don’t regenerate, others may learn to compensate. To get a baseline assessment, she had me lay my hands outspread (as much as I can) on the table, palm down and then up. I had to close my eyes while she tapped different spots on my fingers with a series of plastic filaments, from a hair’s breadth in width to the thickness of a pencil lead. When I felt something, I let her know.

This took a while, but what we discovered is that my ability to sense touch is better than either of us expected (a good thing) and that my grafts have both deep pressure sensation and the ability to detect heat and sharpness (a very good thing). So, at least, I should be able to avoid burns and serious cuts. It’s not a free pass, but reassuring.

My right middle finger, in turn, has good sensation except for the flap’s seam. Basically, skin on the right side of that finger is now folded over the top and connected to the left side, with the top third amputated. It looks odd and stumpy, but it works well enough. What’s curious is how I think I’m still touching objects with the side of my finger when I’m actually feeling with what is now the rounded tip.

My OT explained that the nerves in what used to be the side of that finger are specialized, and my brain is still registering sensation as if my finger is moving sideways. Combine this with the fact that the finger is now a third shorter than it used to be, and it’s no wonder I can’t quite figure out where it is relative to objects I’m touching. Fortunately, she said, this will resolve with time as my brain rewires. Fascinating.

More sessions to come over the next few weeks as I learn how to use my hands again. My homework is to practice curling what’s left of my topmost knuckles before I bend my lower knuckles to approximate a fist. That way I achieve more of a grip. I’ve discovered that it helps to practice this while holding the steering wheel of my Prius, which is thick and padded and just about the right curvature.

Mostly, however, I need to be more mindful of how I reach and manipulate objects. I suppose this will become second nature with time. But it doesn’t hurt to bring a sense of purposeful awareness into simple movements. A good lesson there, too.

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: Hunter Harritt

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

6 Down, 24 to Go

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I finished my sixth hyperbaric oxygen (HBO) dive on Monday. Already, it’s becoming routine. But getting to that point took all of last week. Here are some lessons learned, so far:

  • It’s really important to have some meaningful entertainment when you are confined to your back, lying inside a glass-and-steel chamber for 2 hours and 20 minutes. I decided to immerse in the best fiction writing I could find at the library. Toni Morrison’s A Mercy, narrated by the author, proved to be the perfect choice. Her language is magnificent, and her artistry is both an inspiration and a thought-provoking guide to revising the first draft of my novel (finished in late winter, incubating since then due to all the hand mishegas).
  • Definitely go with a light breakfast for an early morning dive. I do not want to have to take a bathroom break in the midst of the dive—that would either truncate the day’s session or require a second dive/reverse of pressure. Too anxiety-provoking.
  • Meditation breathing really helps to counter claustrophobia. During my third dive last week, I suddenly began to feel trapped in the chamber. Focusing on my breath enabled me to calm myself and focus on the audio novel.
  • Bring a granola bar or other healthy snack for after the dive. I have yet to do this, but I realize it would be a good idea. I’m very hungry when finished, and I still have to spend nearly two hours redoing all my dressings. The dive increases your metabolism rate.
  • Ear tubes—which I had inserted on Friday—definitely ease the pressure on eustachian tubes during the dive (in the first 15 minutes or so, pressure in the chamber increases to 2 atmospheres, the equivalent of being 35 feet below sea level). However, the tubes have also caused some additional muffling of my hearing, to my dismay. My right ear cleared a bit over the weekend, so I no longer sound to myself as if I’m talking under water. But my left has yet to clear, and I can hear my pulse in my left ear.
  • Sometimes I am very energized when I come home, and other days, I need a nap. No clear rhyme or reason. But I have been able to put in a productive afternoon of work every day, so far.
  • The therapy works.
    • Exhibit A: I have had an intractable ulcer on my left inside ankle for almost a year, which had mostly healed over the summer, but was persistently flaking and threatening to reopen. After two days of HBO, the skin was completely healed. Miraculous.
    • Exhibit B: The donor site for my skin grafts on my right thigh shrank by about 50 percent last week. I was finally able to flake off the very dry scab Sunday, which had become quite itchy.
    • Exhibit C: My finger pain has decreased even more than it had from just the grafts. I am now able to drive again. The vibrations of the steering wheel no longer hurt my fingers. I put this to the test on Sunday and was able to drive us to a wedding over an hour away, and back. First long-distance highway drive since July.
    • Exhibit D: My health care team unanimously thinks my grafts are healing well. I spiked an infection in my right middle finger, so am back on antibiotics. But it appears to be healing again, thank goodness.

Tuesday morning is Dive Number 7. I plan to vote in our local elections on my way home. I’m grateful that I feel up to it. Whatever your health circumstances, I hope you do, too.

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: The HBO chamber I’m using looks a lot like this image from Long Beach Medical Center in Long Beach, California.