Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Sight

Interlopers

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Mid-July, and it’s hot in Central Massachusetts. High ’90s last week, and so humid that it felt as if you were swimming, far-too-far from the beach. What a relief when thunderstorms passed through on Friday to clear the air for the weekend.

Friends have asked me if I’m enjoying the heat. They well-know my aversion to cold. But, I tell them, even I have my limits. My happy place is mid-80s with low humidity and a light breeze. So it felt very good to take a walk around the neighborhood Monday afternoon, in precisely those weather conditions.

Only a few other people were outside—a kid on a bicycle, a lawn crew, a boy shooting baskets in his driveway. Just me and the birds and the gypsy moths. The latter seem to be reveling in their last week of life, flitting around tree trunks, plastering bark with tan egg masses that will become next year’s scourge of very hungry caterpillars.

Our city’s trees have been hard-hit, especially oaks. If we get enough rain this season, we may avoid more defoliation next summer. The caterpillars’ only natural control is a fungus that has died off in recent years, due to drought. It’s making a slow comeback, and this year’s infestation is not as bad as last, but conditions have been too dry for Mother Nature to hold the insects fully in check.

As a little kid, I used to do my part. I loved to collect caterpillars and let them crawl all over my fingers (at least until whatever they secreted made my skin peel). Then I would put them in glass jars along with twigs and leaves, poke holes in the metal cap, and imagine they were my pets. They would inevitably die of suffocation.

Walking on Monday afternoon, I wondered how something so beautiful could be so destructive. There’s a marvelous felicity about these moths, how their papery wings glow golden in the sunlight. They brush your skin like a dainty feather. When they first hatched from their pupae last week, fluttering outside my office window, I mistook them for butterflies.

Well, butterflies they are not, and I am hard-pressed to understand what possible positive role they fill in the ecosystem. Same goes for mosquitos. Ditto for rare and chronic diseases, plant-borne and human.

Regardless, nature’s balance deserves—no, demands—our respect. Our lives depend on it. On Tuesday, the temperature creeps back up near 90. I hope we get some rain.

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.

48 Hours

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It’s been nearly 30 years since I visited our nation’s capital. This past weekend, Al and I packed in a slew of sightseeing in Washington, D.C., around a family celebration in Virginia. In just over 48 hours, we visited the National Gallery, Lincoln Memorial at night, Vietnam Veterans Memorial (also at night), Supreme Court, Capitol grounds, Newseum, National Gallery Sculpture Garden, National Archives, Hirshhorn Museum and National Gallery East. On Saturday morning, in sweltering heat, we participated in the Families Belong Together protest rally in Lafayette Park, next to the White House.

I walked my feet off. It was worth it. The highlight of DC, for me, was seeing the original Declaration of Independence, U.S. Constitution and Bill of Rights at the National Archives. The parchment is huge, the writing faded, the signatures inscribed by human hands. The ideals endure. I was reminded by an exhibit about women’s suffrage at the National Archives and the chiseled words of Lincoln’s second inaugural address at the Lincoln Memorial of how much struggle and acrimony is embedded in our nation’s history. I felt the power and protection of the First Amendment in Lafayette Park.

Here are some of my favorite images from our trip:

The conclusion of Lincoln’s second inaugural address at the Lincoln Memorial
Lincoln Memorial at night
Seen in a garden on our way to Capitol Hill
Protesters outside the Supreme Court
Heading toward the U.S. Capitol Building
Section of the Berlin Wall at the Newseum
National Gallery Sculpture Garden
Families Belong Together protest in Lafayette Park
Calder sculptures at the National Gallery East
Saul Steinberg, Untitled (A Conversation), National Gallery East
Le Gourmet, Picasso, National Gallery East

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.

Time Out

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Sometimes I feel as if my head is going to explode from our nation’s vicious politics. So it was a great pleasure and privilege to go with Al to one of our favorite getaways on Sunday, Block Island, just off the Rhode Island coast, for a relaxing Father’s Day. The weather was perfect; the sky, azure with wisps of clouds; the water, emerald and sapphire. I stayed away from my news feeds. Best of all—no crowds. Public school is not yet out, so it was the calm before tourist season begins

I read, watched Al brave 58°F water, walked the beach, took photos and collected stones and sea glass. I got my feet wet, too, even if my toes turned purple. (Added bonus: walking barefoot on wet sand helped me to remove a nasty corn from my left foot that had re-emerged shortly after my podiatrist took it out a couple of weeks ago, a huge relief and boost in my ability to walk without pain.) After supper and some shopping, we sailed back to the coast on the ferry’s upper deck, enjoying a beautiful sunset. Just what the doctor ordered.

Here’s a taste of our visit. 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. Please view Privacy Policy here.

Odd Things

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I thought it was a spider bite. A week ago Saturday, I had taken a leisurely afternoon nap on our couch, and when I took a shower later that evening, I noticed an odd red patch on the right side of my waist, with a few random bumps in the middle. I hadn’t felt anything while asleep, but it was the only explanation I could think of. It was mildly itchy, so I dabbed on some benadryl ointment.

There were other odd things going on with my body, too. The Wednesday before the mystery rash appeared, I had woken up feeling dopey. Couldn’t explain it, other than, perhaps, just not enough sleep. I went to my Pilates reformer class that morning, and after a series of tiring leg exercises, was unable to step up onto the reformer platform for the next set. In fact, I lost my balance and fell, to my instructor’s dismay. I was okay, just a little bruised. I expected a sore back, and sure enough, got one—especially on the right side.

Then there was a dull ache in my right abdomen that began around that Wednesday and did not resolve. I always have a base level of aches and pains, and plenty of rumblings in my gut, but this wasn’t shifting location. By last Monday evening, I was starting to worry. Al convinced me to get some answers, so I called my internist the next morning and got an appointment for Wednesday, a week after all the weirdness had started. When I spoke to the nurse to describe my symptoms, all I could tell her was that it felt as if something was torn on the underside of the skin that covered my belly.

I’ve known my internist for almost four decades. He is compassionate and a good listener. The exam room was freezing, and he apologized and let me skip changing into a johnny for the exam. As he pressed here and there on my abdomen (nothing really hurt), he noticed another pink patch with little bumps. “It could be shingles,” he said. The rash was in position along a dermatome, which is a band of skin above nerves that radiate from your spine to your front—a defining trait of the virus, which locates on one side of the torso.

What??? Shingles? I never had the vaccine, because the original version was not particularly effective, and I was leery of the new one, despite reports of better outcomes. I certainly did have chicken pox as a kid. I have vague memories of lying in my mom’s bed, watching black-and-white cartoons or game shows, covered with scabs. Both my daughters had horrible cases when they were young, and I never reacted. Of course, I was only in my thirties then, and shingles is most likely to attack adults over 50 who carry the Varicella-zoster virus. No one knows the cause, according to my doctor. There have been plenty of theories, but nothing proven.

In any case, my doctor gave me a prescription for an antiviral medication to ease the rash and other symptoms. These are long white pills, and you have to take five a day. I was still skeptical, but decided to go ahead and give them a try. What did I really have to lose, other than annoying side effects?

Good thing, too, because by evening, I found a huge patch on the right side of my back. I felt totally off after taking three of the pills, but by the next day, I was doing a bit better. Especially because I had no more new patches. As of Monday evening, when I am writing, the rash has continued to recede, and I have very gratefully avoided the worst symptoms (so far) of extreme nerve pain. No weeping sores, no scabs. So I’m not contagious, either, thank goodness. There’s been one fleeting sensation of needles and pins at the site of the abdomenal patch, but nothing since. That weird sensation in my abdomen seems to have eased up. Perhaps it was a sign of the nerve being attacked by the virus. The medication is supposed to be most effective when the virus is caught early, and I think I have lucked out (fingers crossed).

Chances of contracting this again are slim, but I need to do more research about the vaccine, to decide if it is worth it when I’m healed. I’ve read and heard varying opinions. The vaccine does not eliminate your chance of getting shingles; it only reduces the odds.

In any case, I also discovered that the first sign of shingles is often mistaken for a spider bite. If there is a next time, and I certainly hope there isn’t, I will know better.

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.

Image Credit: Pietro Jeng

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.