Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

body-mind balance

Waiting for Skylar

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Once again, for the third time in two weeks, we await a major Nor’easter here in New England. This one’s name is Skylar, and it promises to dump at least 8 more inches on Central Massachusetts today, more on Boston. In the meantime, at least half of the 16-plus inches we got last Wednesday has melted. And by the weekend, it’s supposed to hit the 50s, thank goodness!

In preparation, I ran around for a couple of hours on Monday to complete errands before the storm. And did a lot of waiting. First, I had to wait a half hour to see my ENT, a follow-up visit after he had removed my ear tubes last month, post HBO therapy, to be sure everything had healed. Indeed, my eardrums are back to normal, which he confirmed in a five minute check-up. We commiserated about the approaching weather (his home had just regained power from the last storm) and I went on my way.

Next stop was Home Depot for a quick errand. I had to wander around to find someone who could direct me to the right aisle, but at least I had picked the proper section of the superstore and was able to get out of there in about 15 minutes.

Then I headed to the bank to make a deposit. Plenty of cars in the parking lot and another wait in line, as everyone else seemed to be on a mission ahead of bad weather. (Yes, I’m one of those people who do not trust taking a picture of my check on my smartphone and sending it electronically to the bank—not interested in expanding my digital footprint in that way.) The teller and I wished each other a safe day on Tuesday.

On to CVS to pick up some prescriptions. The clerk had trouble finding the second order, finally located it, then noted that our insurance hadn’t covered it. This required some follow-up (we’ve had a recent change in our insurance) and everything was straightened out, after more waiting. And waiting for the updated receipt to be checked into their system. All of this took about a half hour.

Finally, my last stop: blood work at the clinic near our home. I have to have a liver function test done monthly for one of my medications. I’ve been on this drug for many years and never (thank goodness) had a negative test. It seems like a huge waste of time and money. Even my rheumatologist thinks it’s ridiculous. But it’s required. Fortunately, I got right in. The phlebotomist wondered aloud if they would have to come in during the storm. “You’d be amazed how upset people get if their doctor’s appointment is cancelled,” she said, “even if it’s not safe to drive.”

Over the course of my two hours of running around, the sky changed from blue with bright sunshine amidst puffy white clouds to silvery gray. You can feel it in the air that snow is coming. Mother Nature has a way of forcing us to hurry up in order to slow down. Just enough time to take care of my to-dos before Skylar’s arrival. Then I’ll hunker down and simply watch the flakes fall.

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.

Arts and Flowers

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We’re having a brief respite from the cold before bitter weather arrives once again. So what better time to get a mental and spiritual break from winter than this past weekend at the Worcester Art Museum’s annual Flora in Winter exhibit. Local florists and garden club mavens create beautiful floral interpretations of art in nearly every gallery. Here are ten of my favorites. 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.

Special Treat

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I am getting really tired of winter. I know, it’s only a month into the season, officially. We’ve had one real storm and another day of snowfall; not so bad, so far. But it’s the extreme cold of recent weeks and the fluctuating temperatures that I’m finding exhausting. At least the days are getting noticeably longer, once again—a saving grace.

So it was this weekend that I decided to beat the winter blahs and treat myself to some new clothes. I have been wearing the same sweatpants, turtle necks and long sweaters, in varying combinations, for months, now. And I have not gone clothes shopping in a very long time—not since my hands began to deteriorate last spring. The idea of trying on outfits was anathema. I couldn’t manage it. Now that my hands have healed, a shopping spree was a real option.

It didn’t hurt that end-of-season sales were in full swing (ironic, since the season is far from over!). I gave myself a full afternoon, so I wouldn’t feel rushed, to check out some stores at a nearby mall. This, in itself, was a change of tempo, since I’ve come to rely on the Internet for the majority of my purchases.

I picked a good time, because the mall was not crowded. The stores I chose had only a few customers; sales staff were pleasant and helpful. And I scored big: a pretty and practical wardrobe for transitional temperatures, with coordinated layers that I can mix and match. All soft, comfy and relatively easy to put on and take off. And all within the modest budget I’d set for myself.

Most amazing, I actually had fun shopping! This has not been the case for a long time. Dressing, undressing and dressing again has been a huge hurdle. I haven’t been happy with how clothes fit. But I’d done enough homework to pick the right stores with options that fit my taste and pocketbook. In two hours, I was done, buoyed by success.

In addition, I realized that my vision, which has been blurred for weeks due to the hyperbaric oxygen therapy, is beginning to clear. When I had ventured to a mall several weeks ago for a small errand, the signs were so blurred that I felt dizzy. As I left the mall on Sunday, it suddenly occurred to me that I hadn’t noticed or felt disoriented by my inability to see objects that were farther away. So, more progress.

Snow on the ground will be gone by Tuesday evening, thanks to a day of heavy rainfall (fortunately we’re in a short warming pattern, or we’d be buried again). At some point, the crocuses will peak out of our garden. And I continue, thank goodness, to heal.

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.

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