Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Body

Chew on This

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Last week was one of those weeks when I burned up a lot of time going to, being at, and going home from medical appointments. Most were routine and anticipated, but one was not: a visit to my periodontist.

One of the rarer complications of scleroderma is resorption of tooth roots. As my periodontist has explained it to me, my body thinks some of my teeth are invaders and begins to attack the roots like PacMan (albeit much slower). I’ve lost four teeth to this phenomenon over the years. Two were lower rear molars that were simply extracted, and two others involved extractions and implants. My dentist has identified two other teeth that are endangered and has been monitoring them for years.

A couple of weeks ago, one of those teeth announced it was not happy, provoking unpredictable waves of sensitivity in my jaw that felt like a dull ache. I have no idea what caused it to spark. I was not pleased.

When I saw my dentist to get his opinion, he was quite candid. At some point in the not-too-distant future, I would need to go through the expensive process of another extraction, implant and crown. So I made a follow-up appointment with my periodontist to see what steps I needed to set in motion.

By the time I saw him last Wednesday, the tooth was calming down. He took a look and confirmed that my molar was, indeed, on the way out. But he also said that it was really up to me to determine when to take action. If the pain were tolerable or even reduced to background noise, I could leave it be until it inevitably got worse. I could also just have it extracted and skip the implant, but that didn’t make a lot of sense, given the fact that I don’t want to have any more issues chewing and swallowing than I already have (more complications from scleroderma and Sjogren’s Syndrome).

So, I decided to wait. Sure enough, a week later, the molar is relatively silent. I know I will undoubtedly have to deal with it over the summer, but at least I don’t need to jump.

This decision is made more complicated by the fact that I have to switch over to Medicare by the end of the month. All of the supplemental dental plans have a 12-month waiting period for the kinds of procedures involved—unless I stick with my current provider, in which case they might wave that waiting period, but I have yet to confirm.

Even with dental insurance, for which you pay a decent chunk of change, there is typically an annual benefit cap of about $1,000 or a little more. As my periodontist observed, I have to be really sure the premiums are worth it, given that what I’d receive is only about an eighth of what the process will cost. The net benefit is small.

While I’m fortunate to have the financial means to have options, the tradeoffs are infuriating. Why is dental insurance so lousy? Especially as you get older, keeping your teeth is as important to your overall health and well being as staying in shape. It’s not a vanity project. It’s about being able to eat comfortably and safely. It’s also about avoiding complications of infections and other serious dental health issues. But so many people cannot afford the care necessary to preserve their teeth that the simple act of smiling is a very visible marker of social class and economic disparities.

All of which is to say that as our nation wrestles with the question of whether and how to provide universal health care, we must make sure the conversation includes dental health care, as well. Our mouths aren’t separate from our bodies. We can’t just swallow the status quo.

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: Umanoide (And no, those aren’t my teeth.)

 

Women’s Imaging

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Monday morning. I am at one of my least favorite medical appointments: my annual mammogram. I am relieved to get through the test in a matter of minutes (even as it feels much longer when clamped in that sadistic machine). What strikes me most about this year’s visit is the new surroundings for the clinic, which has been relocated into a large medical complex. It’s the signage that gets me—a separate section within Radiology dubbed “Women’s Imaging.”

Why do they have to use a euphemism for Mammography? Is someone afraid that women are too embarrassed to go to a waiting area clearly marked for what we all know is screening for breast cancer? Do they think our sensibilities are too delicate to deal with acknowledging one of the major risks to women’s health?

I find it ridiculous. And demeaning. Being an intelligent health care consumer means being aware and informed about the realities of your medical conditions, treatment options and risks. It does not mean pretending or denying or ignoring that women have some specific health risks that merit our proactive attention.

I have made a conscious choice to follow my doctor’s recommendation for an annual mammogram. My mother had a benign cyst removed from her breast when I was in grade school. I suffer the discomfort because I want to know the results, even as the value of mammograms has come into question in recent studies. In particular, there are serious questions about whether women are being over-treated for small tumors in breast ducts that show up on the scans, but that would not actually threaten health if left untreated. (You can read more about that here.)

Fortunately, so far, I have never had to contend with a suspicious finding. I hope I never have to make a choice about such a result, but if I did, I would consult all the research to make a fully informed decision about risks of cancer versus risks of treatments. And I would want my physicians to be informed and direct with me about options.

So, let’s take women’s health seriously. Spare us the euphemisms and respect us as adults who can handle whatever life throws at us.

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: Arisa Chattasa

A Question of Identity

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According to a well-known poem, March is supposed to bring breezes, loud and shrill, to stir the dancing daffodil, but so far, this most unpredictable of months just brought us a foot of snow. All area schools were closed on Monday, including the Goethe Institut in Boston, where I have been taking German classes since the fall.

I was quite disappointed. I look forward to my Monday night class each week. Not only is our instructor great, but also my classmates are a fascinating group of adults, from many walks of life, with many different reasons to pursue this singular goal: learning to speak and read German.

My own desire was sparked by our European trip last summer to honor the memory of my great grandparents, who died in a concentration camp near Prague in 1943. Our visit to Terezín and the Stolpersteine ceremony commemorating them in Berlin impacted me deeply, in ways that I found very difficult to verbalize and am still sorting out, months later. Upon our return, I suddenly realized that I needed to learn their language, the language of my mother and her parents and all my German ancestors, to process what is still beyond words for me in English.

This has turned out to be a highlight of my week. I am no foreign language maven, and I am forcing some rusty synapses in my brain to start firing again. But I am loving the challenge. Doing my homework—Hausaufgaben—is fun, a meditation of sorts that completely clears my mind of all noise and worries. There is just the puzzle to solve: How do you say that? What does it mean? How do these words fit together? How does it differ from English? Why are the words arranged that way? And how is the way that Germans think and express themselves—the way my mother as a child and her family thought and loved and argued and dreamed—how is that defined by and encapsulated in their native tongue, in a way that was passed down to me without my even realizing it?

So much of who we are is framed and molded by the words we use to interpret the world. My mother and her parents were formal people in many ways. So when I learned that, in German, you use the formal version of ‘you’—Sie— for addressing someone older, officials, and anyone you don’t know well until you’ve met them a few times, it suddenly all made perfect sense to me. That careful adherence to rules of social etiquette conveyed to me directly and indirectly by my mother was the way she learned to understand the world from her first spoken words. Such is the power of language.

When she was dying, 20 years ago this April, my mother reverted to German. Over and over, she murmured, nein, nein, nein—no, no, no. I will never know what she was referring to. I wondered if she had traveled back to her childhood, when she had to leave her homeland to escape the Nazis. So many years later, I wondered, had a part of her remained forever trapped in a time capsule.

The search for identity is a lifelong quest. We can become mired in tragedy, loss, trauma, a chronic disease that profoundly alters our whole way of being, and let that become the focus of how we define ourselves. But I’d rather keep pushing, discovering, learning more about the world within and without. I don’t know where this new passion will lead me, but the journey fascinates.

So, until next week, auf Wiedersehen.

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: Berlin graffiti seen last summer near Alexanderplatz

High Wind Warning

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Monday morning. I awake to wind, rushing and subsiding, like an angry tide. A quick check of the weather forecast on my phone reveals high wind warnings all day, with gusts over 50 miles per hour throughout the afternoon. I have to drive into Boston for an evening class. I imagine a tiring commute, fighting the wind, but am determined to go, despite plummeting temperatures.

As I make the bed and bandage my chronic thumb ulcers, I listen to the The Daily podcast by the New York Times. Today’s topic: whoever controls the incipient 5G network, which will integrate all things hooked to the Internet—self-driving cars, smart TVs, home security systems, communications networks, the power grid, artificial intelligence, our brains—will basically control the world. This is the new Cold War. The wind howls outside. I sit cross-legged on the floor, try to quiet my mind and meditate.

While cooking oatmeal and boiling hot water for tea, I call the lab that has sent me two invoices for recent bloodwork stating that we owe $150 because the claims were rejected by our insurance. This happened while our COBRA administrator had not yet told our insurance company that we had renewed our policy back in January, so I have to get the lab to resubmit.

I work my way through their phone tree until I reach the customer service line, which promptly puts me on hold. I put the call on speaker and stir the oatmeal. Winds rush through trees and around corners. I sit down at the kitchen table, sip my tea and begin to eat my comfort food. Peppy music crackles through the phone, interrupted momentarily by a male voice: We apologize for the delay. A customer representative will be with you soon. Your call will be taken in the order it was received.

Over the cycling music, another male voice cheerfully ticks off all the possible lab tests I could consider: prenatal screening with a non-invasive blood test that could inform expectant parents of any chromosomal abnormalities at ten weeks, an eight year risk analysis for diabetes, a comprehensive heart health profile. I wonder about lab test results in a world of 5G interconnectivity. Who will have access to what about me in the future? Who does already?

Eight minutes in, a woman takes my call. She asks for the invoice number, my name, address, insurance policy ID, group ID (name, rank, serial number). I answer. She goes silent. The wind rushes outside the kitchen windows. She tells me to disregard the invoices and that the claims will be resubmitted. I hang up, finish what’s left of my oatmeal, rip the invoices in half and text Al the good news.

I think about the bits of data shooting from my fingers through the Internet to his phone. I think about the digital footprint of this blog, drifting forever in cyberspace. I think about a video clip of three horses galloping away from a swirling wind turbine, seconds before it disintegrates in a powerful storm. As I type, the evergreen boughs of the yew beyond my office window chop and sway in the rushing wind.

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: Benny Jackson

Midwinter Break

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It’s been a busy, snowy weekend—but the best kind of snow. Lovely, fluffy, not too messy or inconvenient. I’m taking a mini midwinter break from writing my blog this week, so I simply share with you one image of the snow on the rhododendron by our back door. Sometimes the greatest beauty is found in the simplest places. Have a good week.

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.