Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

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Devil in the Details

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I have a small pharmacy’s worth of wound care supplies in our bathroom closet. Various types of gauze, bandages, dressings, ointments, tapes, heating pads, you-name-it, it’s there, the cumulation of decades of experimenting. For my very sensitive finger ulcers, I’ve found one particular brand of bandages that work best—Coverlet. They make a range of sizes, and my favorites are 3/4″ x 3″. They come in boxes of 100, and I order 10 boxes at a time.

Usually, I manage to order more before I run out. But not this past week. I haven’t needed to use as many bandages daily since my hand surgery (fewer ulcers because all the trouble spots have been amputated), so I’ve gotten a bit lax about reordering. I also mistakenly thought I still had some left, because the boxes were stacked on top of some other Coverlet boxes of different sized bandages that I rarely use.

Oops. Big time.

The issue is that these bandages are made of very soft fabric; I have never found anything like them in stores. They breathe and are comfortable all day long. As soon as I realized I had used my last bandage on Friday morning, I ordered another set of 10 boxes and grudgingly paid a steep rush fee. But the soonest I could get a guaranteed delivery was by this Tuesday.

What to do? I spent about a half hour online, researching fabric bandages. Fortunately, I found some decent substitutes at Target. Years ago, I used to buy generic fabric bandages from CVS or Target, but then they changed the specs and the fabric was coated with some kind of stiffening compound that rendered them useless for me. It seems that, in years since, these generics are no longer coated. The offending substance apparently was Latex, which many people are allergic to.

A couple of small boxes of the generic bandages did the trick over the weekend, although my thumb ulcer was not terribly happy with the alternative; the surrounding skin seemed more irritated. Fortunately, my shipment arrived early, on Monday morning, just after I had finished getting ready for the day. It was well worth the extra time to remove the substitute dressings and replace them with my good bandages. Immediately, my thumb felt better.

Before I stored the boxes in the closet, I marked the bottom two: “Second to last/Reorder” and “Last Box!”

Sometimes, the smallest details make the biggest difference.

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.

Don’t Take No for an Answer

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Several months ago, I received a notice from the pharmacy that partners with our health insurance. They were no longer going to cover the Restasis eye drops I rely on for my Sjogren’s Syndrome dryness. Instead, I could substitute a prescription for Xiidra (ex-ID-ra). There was no explanation.

I called to be sure I understood. The customer service rep was snippy and dismissive. Still no explanation. I have extremely dry eyes, and it seemed as if there was no choice, so I contacted my optometrist and asked for a scrip for the new drops.

The first thing I noticed when I received the box of my new eye medicine was that the active ingredients are completely different. The second thing I noticed is that the Xiidra eye-drop capsules cannot be resealed, whereas Restasis capsules can be (even though you’re not supposed to, I’ve never had an issue getting two doses out of each capsule, which reduces waste and saves money).

The third thing I noticed was that the Xiidra drops burned like hell. Restasis can be irritating, too, but nothing like this. My eyes got red, my vision blurred, and there was no way I could put them in twice a day, as prescribed.

All of this was going on while my eyes were still readjusting after the hyperbaric oxygen therapy for healing my fingers. So it was hard to assess how much of my blurred vision was due to the drops, how much to dryness because I couldn’t tolerate the proper dosage, and how much to HBO aftermath.

For the past few months, I’ve been toughing it out, hoping I could adjust. And the longer I used the drops, old problems of light sensitivity and blurred vision as the day wore on resurfaced. Finally, I’d had enough. Al called our insurance and the pharmacy to find out how to appeal the decree. It was simple. I just had to ask my optometrist to contact the pharmacy and tell them I needed the Restasis because I couldn’t tolerate the Xiidra. Magic words: “medical necessity.”

Within a week, I had my Restasis again. And within only a couple of days, I could already tolerate sunlight better and see more clearly. Thank goodness. Lesson learned. Just because the Health Insurance Powers-That-Be limit your options, push back to get what you need.

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: Elena Taranenko

 

In Transition

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Dare I say it? Finally, spring has arrived. “I thought it would never get here,” one of my neighbors remarked as I walked by his house Sunday afternoon. I commiserated.

Despite last week’s snow (yes, snow), a few tulips, daffodils and hyacinths adorn gardens along my route. In our own shaded rock garden, cheerful miniature daffodils greet me as I enter the back door to our kitchen. Buds on our Callery Pear are swelling, and there is a reddish mist on the maples down the street.

Best of all, I am starting to shed my warm layers. I even walked with my coat open on Sunday. Without gloves. Miraculous.

In a burst of my own creative energy, I decided to start a new sewing project. I haven’t considered anything that hand intensive for about a year, now. The project is a light-weight, unstructured coat for transitional weather. I found it online, a pattern you download and print. It took me a few hours after I returned from my walk to piece together the tiled segments, then cut out each piece and mark with sewing construction notes.

On Monday, a few fabric swatches I’d ordered arrived in the mail. They are luscious, lovely wool tweeds, but I’m not yet certain if there will be enough yardage available for the coat (end of season bolts). So I will keep looking.

What pleased me the most, so far, is that the process of assembling the pattern pieces—aligning and cutting and taping—was both manageable and fun. No hand problems or pain. I know this is going to take some time to finish. I hope it won’t be fall before I’m done. But that’s the beauty of sewing a coat for transitional seasons; even if it takes me all summer to complete, I’ll be able to wear it when I’m finished.

As with everything I do now, I have to refigure how to use my hands post-surgery. Pacing myself through a sewing project is essential. I don’t want to mess up my hands in the process. But I also don’t want to avoid one of my favorite creative hobbies for fear of hurting myself.

Spring has arrived late this year. We may still have some chilly set-backs. I can’t recall when I last pulled out my sewing machine and serger—at least a year has passed. With longer days and warmer weather, I’m ready to try again.

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.

A Matter of Distinction

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A friend asked me the other day, “What’s new?”

“It’s my birthday on Wednesday,” I replied.

“Oh, are you going to be 65?!” he asked, intending it as a jest.

“No, 64. But 65 would be great, because then I’d finally be eligible for Medicare,” was my rejoinder.

I certainly am looking forward to being relieved of the stresses and uncertainties of employer-based health insurance. But in the meantime, I’m also looking forward to my birthday tomorrow.

Al and I decided to celebrate this past weekend, staying overnight close to Boston for a special dinner out on Saturday night, a great performance by Berlin-based Max Raabe & Palast Orchester at Berklee College of Music, a wonderful brunch Sunday morning with Mindi, and on to an afternoon at the Museum of Fine Arts. I came home feeling celebrated and refreshed.

This, despite some really nasty, cold weather that precluded any chance to wear festive springlike clothes for the occasion. Instead, I decided to decorate my hands.

I haven’t worn any of the beautiful heirloom rings that belonged to my mother and grandmothers in many years. Why draw attention to my fingers? They’re so distorted, especially now, after all the surgery last fall. Or so I’ve told myself.

But Saturday afternoon, as I packed my bag, I reconsidered. Why not? The jewelry reminds me of women that I loved. Both my grandmothers were very elegant, with incredible fashion sense and strong, individual taste. My father’s mother always wore a beautiful opal ring, set like a flower with small opals as petals.

As I child, I wondered why she didn’t have a diamond ring like every other married woman I knew. But now I can really appreciate how distinctive a statement she was making.

So that’s the ring I chose to wear for my birthday weekend. I could only fit it on my left pinky, next to my wedding ring. The gold of one does not match the other. I didn’t care. It simply made me feel good to touch its detailed surface and remember her. It also felt good to assert to my own sense of style.

My fingers are certainly distinctive. And I have ring to match.

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.

Confidence Boost

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Passover preparations are always a major challenge for my hands, and this past week posed no exception. To my great advantage, Al readily accepted the role of sous chef, the only way we could do all the cooking in time for the first seder, which we hosted on Friday night.

Since we serve a lot of vegetarian entrees, there was much peeling and cutting and chopping. Staging the meal involves advanced planning and careful timing of what to make a day ahead and what to make within a few hours of serving. Al did most of the prep, and I did the strategy and stirring and seasoning. Our daughters helped with last minute errands and crunch time details. Per usual, we were working right up to the doorbell’s ring. But we made it, the seder was thought-provoking, the meal delicious and enjoyed by all.

Friday night, however, I was totally exhausted when our guests left. My feet were shot from standing all day in the kitchen, and my back ached. My hands, remarkably, were in pretty good shape. Our cousins hosted the second seder on Saturday night, which provided a good respite.

By Sunday, when we hosted another big family meal, I had rested up and was able to do some of the cooking on my own. Indeed, I haven’t done this much in the kitchen since my hands fell apart last summer. I could actually grasp the handle of a French chef’s knife and chop fairly efficiently. I was very careful not overdo, and I have no new digital ulcers, as a result (at least, not yet).

My confidence got another boost on Monday afternoon, when I graduated from my post-surgical occupational therapy. My OT checked my grip strength, compared to our last appointment about a month ago, and the exercises she had given me paid off with a 20 percent improvement. I am well within functional range, which is so encouraging.

All of this means a great deal at this time of year, when my hands seem to be most vulnerable. Though I have not found any definitive research on seasonal patterns in skin ulcers, the spring months are typically my worst. It was around this time last year when my digital ulcers began to go out of control, in part exacerbated by Passover preparations. But the weather definitely has something to do with it—the constant warming and cooling, the dry air from heating systems, the transitions from warm house to not-quite-cold-but-cold-enough outside—all seem to add up to more trouble.

I’m monitoring my fingers very carefully, trying to be mindful and set limits on what I can and cannot do. But it’s always good to discover that the boundaries are wider than I assume. Just like the snow that blanketed the trees Monday morning and was gone by sundown, looks and expectations can be deceiving.

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: Syd Wachs