Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

body-mind balance

To Stay or Go

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It’s been hard to concentrate. Peaceful protests across the country and around the world that began with the murder of George Floyd and have swelled to encompass deeper and broader issues of racial injustice throughout our society demand attention and engagement. And here I sit, because of Covid, wanting to join in but knowing I can’t afford the risks.

I’ve joined several public protests in the past three-and-a-half years—the first Women’s March; several demonstrations protesting treatment of immigrants, including one in Washington, D.C., in Lafayette Park across from the White House; a local march for gun safety. That’s more protests than I ever did when I was growing up in the sixties, because our parents wouldn’t let me and my sister attend anti-Vietnam War and civil rights demonstrations out of fear for our safety. Now I’m 66 years old, older than they were then, during one of the seminal moments in our nation’s history, and I’m stuck at home.

I talked this over with my cardiologist Monday morning, on a previously scheduled phone appointment. He was quite clear that I need to avoid crowds due to my pulmonary risks with scleroderma and the nature of COVID-19. This advice reinforced my earlier conclusions. So I will stay put.

But my heart is with the peaceful demonstrators. And so I have written to our congresspeople, made donations, talked with family and friends across the political spectrum. I read and follow many news sources to stay informed and aware of a range of views. I listen to various podcasts to gain deeper insights and understanding of the profound injustices at stake. Most of all, I hope to find a way to help from home to support free and fair elections—the essential issue this November.

Each of us has to determine how to respond to this moment. It is my prayer that we will find our way to greater empathy for all, a more compassionate and just society, true public safety, and a willingness to really listen to each other in order to get there.

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: Max Bender

Thumbkin

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Memorial Day Weekend was low key for me this year. Not only because of the pandemic, although that certainly set the tone. The weather wasn’t the culprit; it was quite beautiful here for most of the weekend. There was simply nowhere that I felt like going to mark the beginning of what will be a most unusual summer season.

Some of my mood involved wanting to avoid crowds. I understand everyone’s restlessness and desire to get out and away, but I really don’t get all the celebrating without social distancing and masks. Pretending it’s over or choosing to ignore the risks to others from your own actions is to be willfully irresponsible. The virus doesn’t care how impatient we are. It will always have the last say. Tragically, the consequences of crowding over this weekend will be all too clear in a few weeks as the infection rates climb again.

The rest of my mood was due to spending the better part of the past few days recovering from a sudden and severe infection to my left thumb. I don’t know how I picked it up, though I suspect a visit to one of my providers in a hospital office a couple of weeks ago, when I was not allowed to wear protective gloves (hospital policy). In any case, several days after that appointment, my thumb started acting up, and by Monday, a course of topical antibiotics didn’t help, so on Tuesday I started my standby antibiotic to stem the tide.

It seemed as if this was calming down the discomfort for a couple of days, but by Thursday, I was experiencing more pain, and by Friday, I had spent a restless night trying to deal with what was becoming one of the worst bouts I’ve had with pain management in about three years. On a scale of 0 to 10, I was hovering around 8 or 9. The sensation was akin to the literal purpose of a ‘thumbkin’— thumbscrew torture—that, and unpredictable electric shocks from inflamed nerve endings. Not fun.

Fortunately, my infectious disease specialist prescribed a stronger antibiotic on Friday, and after the third dose on Saturday, the swelling began to recede and the pain was significantly less intense. I am exceptionally grateful to him, given that he’s the head of infectious diseases for one of our local hospitals and quite busy with COVID-19 cases. I’ve known him for at least 20 years, he trusts my account of symptoms, knows all the antibiotics I’m allergic to, and took an educated guess about this one, which seems to have done the trick without setting off a reaction (so far). We speak by a telehealth appointment this afternoon to review status.

The swelling and aftermath at the tip of my thumb caused the skin to rupture and allow pits of calcium and liquified calcium to escape, which also helped to relieve pressure and pain. I’ve known for decades that there’s a Milky Way of these pits in both thumbs due to calcinosis, and any inflammation or swelling stirs them up. I’ve been carefully debriding the wound, another skill I’ve developed over years of dealing with digital ulcers, and will be babying this thumb for weeks to come as it heals.

But here’s where the beginning of the summer season really is something to celebrate. It’s getting warmer, always good for healing. My energy bounced back pretty quickly after catching up on sleep over the long weekend. I’m feeling much more like myself again, and I’m grateful for the extra time to rest.

This infection is also a strong reminder that microscopic bacteria and viruses are ever present. Just because we can’t see them with the naked eye doesn’t mean they aren’t there. Skin is our first line of defense against disease. For those of us with scleroderma, caring for our skin and overall health is just a whole lot more complicated than hand washing. To get through this pandemic, however long it lasts, however inconvenient the restrictions may seem, there is nothing more important right now than taking the needed precautions that will protect ourselves and others, whether known or not.

End of rant. Be well.

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: Kon Karampelas

A Matter of Trust

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For all the times I sit down at my computer with only an inkling of what this week’s post will be about, the universe always seems to hand me a story. Here’s what happened Monday morning . . .

Back in early April, I applied for my Social Security retirement benefits. I was to reach full retirement age at 66 a few weeks later, so it was high time to file. With the pandemic crashing life as we know it, I assumed it would take extra time for my claim to process, so I waited. And waited. And waited.

Around the end of April, I received two emails, sent within seconds of each other in the wee hours of the morning, informing me that there was a question about my claim. According to one of the emails, I had worked in a town called Reading and had a pension while employed there. The other didn’t mention the town, just the issue of a pension, which called my benefits into question. Both referred me to a Mr. Moore at the Social Security Administration and told me to call. Each email gave a different deadline in May, by which time I needed to respond or my benefits would be reduced.

I was immediately suspicious, not only because of the conflicting deadlines, but also because (a) I never worked in or for the town of Reading, Massachusetts, and (b) there are a lot of other towns named Reading across the country—and the state was not specified. My concern was amplified by the fact that the emails were “signed” as “Social Security Administration” (not by the mysterious Mr. Moore) using a typeface called Brush Script, which is a very dated style popular in 1950s advertisements. What government agency would use that typeface as its signature in an official email?

So, I did what any Internet savvy consumer would do, and I googled the phone number that I was supposed to use to contact Mr. Moore. Sure enough, there were a slew of reports that this number was a scam. There were other reports that it was legit. I checked the SSA website and found notices of many scams currently active, including some associated with COVID-19. I decided this was probably a way for the scammer to try to get my phone number, so I trashed the emails and wrote a complaint to the SSA Inspector General’s Office.

Meanwhile, my benefits application was still pending in my SSA online account. I planned to call this week to find out what was going on. Then Al brought in the mail on Monday. “Here may be the answer to your question about your benefits,” he said, handing me an official-looking envelope from the SSA. I opened it and was dismayed to find a hard copy of the exact same Mr. Moore letter, with the same Brush Script signature, a vague reference to a pension issue, and a new deadline of June 13. As had the previous emails, it included numbers for our local SSA office and the national office, too.

Not trusting anything, I looked up our local office online. The numbers matched. I called, and to my astonishment, was connected to a real human being within minutes. And, she confirmed that Mr. Moore was, indeed, real, there was a question about a pension from work in Reading, Mass., and I really needed to get in touch with him or my claim would be closed. I was so confused that I was beginning to wonder if this woman really worked for the SSA, whether I had somehow earned a pension in the past, and if I was at risk of giving up confidential information during the call.

But she was quite patient and even tried to connect me to Mr. Moore directly. As it turned out, he had picked up another call while I was on hold, so she said to call the number I’d previously assumed was suspect. I left a message for him and went down to our basement file cabinet to find the only information I could imagine had anything to do with this, my severance arrangement when I was laid off 10 years ago. I had paid into a retirement plan, but received the balance when my job ended and reinvested it.

Soon enough, Mr. Moore called back. He turned out to be a most pleasant guy, quite calm and understanding. The mistake had been his, to use the wrong town instead of my former employer, but only because they have been swamped since the pandemic struck and he’s been struggling to push out all the paperwork for many, many benefit claims. He took a closer look at my case and realized that the type of retirement plan I’d paid into was not an issue, immediately approved my claim, took care of tax withholding, told me what amount to expect, and said there was a good chance I’d get my first check by week’s end.

When I told him about the scam information I’d found online, he was quite familiar with it and said that there had been many attempts by Russian hackers to get into their system (none successful—sure hope he’s right), and that the phone number I’d found suspicious but had now used to reach him has sometimes even come up in Google searches as a Russian business. More evidence of trying to throw us into confusion and mistrust of government institutions. I thanked him for his help and wished him well. (I did not mention the typeface.) After I hung up, I checked my online account and saw that, indeed, my benefits had been approved.

We live in a time of deep distrust. So much that we’ve relied on to anchor our lives is now uncertain. The Internet is rife with 21st century snake oil peddlers, thieves, and propagandists. Conspiracy theories are tearing our country apart.

It’s essential to be vigilant. It’s also essential to do all your homework. I could have called the national SSA number right away, or our local office, verified or reported the emails I received, and resolved all of this much sooner.

Several weeks ago, I seriously considered writing a blog post about what I thought was a scam, as a warning. Today my message is different. Today my hope, Dear Reader, is that you will not let cynicism and skepticism keep you from getting the information and help you truly need. Let due diligence, not fear and suspicion, be your guide. Now, more than ever.

Be well.

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: Jamie Street

As the Rain Approaches

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The wind is blowing outside as I write on Monday afternoon. Yew boughs bounce and bend. A slight chill seeps through the floor of my converted-porch office. Beyond bay windows and walls, rushing air ebbs and flows with a whoosh and sigh, whoosh and sigh, like the sea, like a giant’s lungs.

The Earth breathes. I breathe. Every morning when I awake, I say a prayer of thanks that my lungs fill with ease. Each breath feels delicious, comforting, the most basic reassurance that I am alive and still healthy while mired in pandemic time. I meditate and follow my breath and observe how each inhalation and exhalation is so different and unique to that precise moment while at the same time so unremarkable as to be forgotten in the next.

Yews boughs bend and bounce. I watch for a cardinal or blue jay to brighten the branches that have turned gray-green in the pearly light of approaching rain. But they are wise to the weather, tucked into their nests or other hiding places to ride out the storm. Somewhere nearby, I can hear a bird singing, but don’t know enough to recognize the vocalist.

No bird answers. A car sweeps past. A siren wails in the distance. My ears ring with decades-old tinnitus that I usually ignore. It is a constant internal concert of rushing, high-pitched tintinnabulation on the right, countered by a deep, soft lowing on the left. It becomes more insistent in stillness, an irritant that I normally brush away with music or conversation or concentration.

On this pearl-gray afternoon, however, I don’t mind its reminder—that I am still here, sitting at my desk, pondering the next phrase, as the wind rushes outside, and the birds find refuge, and the rain approaches.

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: Mahkeo

Into the Woods

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Last weekend, I was starting to go stir-crazy. I hadn’t been outside more than twice during the week to walk around the neighborhood, thanks to chilly rain, and, given the coronavirus surge in our region, I did not run any errands. So when the sun finally emerged and the temperature hit 60, we drove to a nature preserve about a half-hour south of home.

On the way, we passed electronic highways signs urging out-of-state visitors to Massachusetts to self-quarantine for 14 days. Necessary warning, but it made my heart heavy. Traffic was moderate, and the small parking lot for the preserve, Cormier Woods, was almost full. With no one nearby, yet, we looped our face masks around our ears and tucked the fabric under our chins.

As soon as we headed down the first trail, I began to relax. Just getting out in fresh air, in a sylvan setting, was a relief. Nature, which has brought us the deadly coronavirus (with all too much help from humans), also now brings life’s rebirth here in the Northern Hemisphere. Each emerald sprout, each hopeful pine sapling pushing through fallen leaves, reaching for light, promised that life still flourishes.

When other hikers passed us by, we all performed the new greeting ritual—pull up the mask over your nose and mouth, step to the side about six feet, and wish each other well. Everyone seemed in good spirits, and it was nice to see others in the flesh, rather than via computer pixels.

Here is a sampling of that lovely afternoon. I hope, Dear Reader, that you, too, are able to find some safe relief in whatever way Nature provides for you.

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.