Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

managing chronic disease

Phantom

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Seven months have passed since my hands were “revised” with skin graft surgery, nearly five months since I completed 60 dives in a hyperbaric oxygen chamber. The weather is warming, the trees are in full leaf, the scent of lilacs lingers. And for unknown reasons, I have begun to experience phantom sensations in my partially amputated right middle finger.

Not pain. Just itching. It’s as if my finger is tingling in a non-existent tip. Quite peculiar. I want to scratch it, but there’s no there, there. Instead, I rub the bulb-like stump that remains, with its confused nerve signals that tell my brain I’m touching the side of my finger when I’m actually feeling what is now the top.

Usually, if I rub the stump for a few minutes, my brain reinterprets the sensation and the itching goes away. I wonder how long this will go on.

There are no ready remedies for phantom limb pain (fortunately, my experience is more benign). Non-invasive therapies include mild nerve stimulation with a TENS device, acupuncture and the mind game of a mirror box, which involves doing symmetrical exercises using the mirror image of your intact limb as a cue, while imagining that your amputated limb is mimicking the same movements.

My phantom itching is so intermittent that I doubt if exploring these or other options is worth the time. But I find the whole experience most curious, albeit annoying. How is it that my brain still thinks I have an itchy finger tip? The location of the itch is always the same, about a half inch above my stump, where the top joint used to be. The finger was actually longer before the surgery. Why that specific location in nothingness?

There is also the strange confusion of how I’m actually touching objects. All these months after surgery, the fact that skin from the side of my finger was used to cover the remaining stump still signals to my brain that I’m brushing objects with that side, even as the skin is now effectively oriented in a 90-degree angle to its original position.

I’m trying to teach myself how to consciously reinterpret what I’m sensing. How odd, to be dealing with this most basic way of interacting with the world at a time when so many assumptions about what is real and true are under siege.

Sensations are hard-wired. Or not. Sometimes they merely shimmer.

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: Sebastian Spindler

Eureka Moment

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As plastic supersedes cash for more and more transactions, it seems that those self-service credit card dip machines are ever more prevalent—and frustrating. I am not referring to credit card interfaces that you use to swipe or insert your chip card for payment at the checkout counter. Those are ubiquitous, but relatively easy to use.

No, the bane of my existence are those parking meters, train ticket machines, garage payment terminals, gas pumps and ATMs with slots that require a nimble grip and coordination to dip your card most of the way in and pull it back out. Some of these contraptions have little friction and are relatively easy to use. But the ones that grip your card are simply a disaster for my hands.

This was true even before my surgery. Now, with even less of a grip, I struggle to stick the card all the way into the slot, let alone pull out the card fast enough to spare myself a voided transaction.

A couple of weeks ago, I was trying to add value to my Charlie Card (for those of you unfamiliar with the Boston T, these are plastic cards that you tap at the subway turnstile to gain entry). I had no cash on me, so I had to pick the credit card alternative. And the machine had one of those dastardly tight credit card grips. I tried at least three times to dip my card, but the transaction failed to register. I was really aggravated.

Not knowing what else to do, I stepped aside to reorganize my wallet. Then, in a necessity-is-the-mother-of-invention moment, I had an idea. What if I used my nail clippers, the kind that you unfold into a V and squeeze the ends to trim your nails, as a way to grip my credit card? The card is too thick for the clippers to damage.

After a bit of fumbling to retrieve the clippers from my purse, I waited for the line at the ticket machine to clear and stepped up to try my experiment. Sure enough, one dip and my transaction went through! I was very pleased with myself.

Back home, I described my victory to Al. He had an even better idea: use a bulldog clip to hold the card. These are those metal clips with wings that you can flip up to squeeze the clip open and flip down when the clip is secured. They come in all different sizes, so it’s just a matter of experimenting to achieve the right balance of required finger pressure and fulcrum length.

So, there you have it. I hope this works for you, Dear Reader, if you share my struggle with credit card dipping. And if anyone out there has an even better solution, please let me know.

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.

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.