Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Sight

Tone Deaf

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Monday morning, I picked up our wireless landline phone to make a call. No dial tone. It sounded as if one of us had accidentally forgotten to hang up. I checked around the house, but our other two wireless phones were in place, and none had a dial tone. So I made the call on my cellphone, then forgot about it until later in the day, when I wanted to make another call.

This time, I called Verizon on my cell. And got stuck with the automated “assistant.” It asked me a few questions to determine the extent of the problem, tested our line remotely and set up a repair visit. The earliest date? Thursday.

Now, I’m fortunate to have a mobile phone. What about people who don’t? Plenty of folks rely on cell phones for all of their telephone communication. But not all. If I didn’t have a cell, and I didn’t have Internet, I would have no way to get in touch with Verizon to report the problem—or any other problem, for that matter, like a medical emergency.

Not long after I set up the repair visit, I decided to check the phone line. By a miracle, the dial tone had returned! So I went online and canceled the repair visit. Picked up the phone to make a call and . . . heard a high-pitched busy signal. Aaargh!

So, back on my cell, I called Verizon. Of course, now they had a record that I’d called and resolved the prior repair issue. “We’re sorry that you’re still having problems,” oozed the automated voice. It recommended trying to test the system ourselves, to save the cost of a service call, because now their remote test indicated that the problem involved internal wiring (before, the issue was external). I was getting more and more frustrated. The steps involved unplugging all our phone jacks, and then systematically testing them with a “corded phone.”

Who has a corded (aka old fashioned, non-wireless) phone lying around the house, these days? Fortunately, yours truly is a pack rat, and I actually had one stashed away in my closet. We tested the line. Still the annoying busy signal. I marched back to my desk and once again called Verizon on my cell. This time, I was literally yelling at the auto assistant, trying to get it to send me to a human being. After another five minutes of annoying questions, the same routine I’d gone through twice before, it connected me to a nice customer service rep in Albany, N.Y. (I assume he told me his location to assure me I wasn’t being farmed out to an international call center, a fascinating response to current politics—but I digress).

While he couldn’t really give me any more information than the auto assistant, at least he was pleasant, attentive, and able to hear the annoying busy signal when I held the land line up to my cell. He also could answer my questions about charges for any repair visit. Still had to wait until Thursday, but so be it.

Within about an hour of that call, our phone rang. The line was crackling, but it worked. Another hour later, it rang again, with a Verizon recording to see if our phone issue had resolved or if we still needed the appointment. The line was crystal clear. I cancelled the repair.

Thank goodness it’s fixed. But I still wonder about the person who can’t wait three days to have phone service restored, if the issue can’t be fixed remotely. What about older adults who may not be adept with mobile phones or able to afford them? What about people with health challenges that can’t wait? I wonder if the line was repaired remotely within a few hours only because I pushed back against the automated system to get through to a flesh-and-blood service rep?

Customer service is no service at all if it ignores the real needs of the customer. Are you listening, Verizon?

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. Please view Privacy Policy here.

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