Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Hearing

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

First Attempt

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I’m turning 65 this April. The time has come to apply for Medicare. Especially after a recent scare—when our COBRA plan failed to contact our insurance that we’d renewed our coverage for 2019 and we had no active health insurance for about a week—I don’t want to take a chance on missing any deadlines.

Back in December, Al and I met with a benefits counselor at our local council on aging to find out next steps. Since I have not yet applied for Social Security benefits, and don’t intend to until I’m 70, I did not receive a Medicare card automatically in the mail in January. The counselor advised, if that happened, to apply for Medicare in March. However, I recently read an excellent article in the New York Times that explained the rules in greater detail and found that I could enroll up to three months in advance.

Especially given the threat of yet another government shutdown this coming weekend, I figured I should take care of it this week. So down I went to the local Social Security office on Monday morning to apply. Al had warned me to get there early. I thought I was doing pretty well, arriving around 10:15 (I am so NOT a morning person).

What a mistake. The first sign that I had totally misjudged the situation was the parking lot. Every space in the upper lot next to the office’s front doors was taken. As I looked for a parking spot below, I noticed a steady trickle of people walking to the upper lot, and just a few coming back down.

Even with those hints, I was not prepared for what I found when I stepped inside. The place looked like a crowded airport terminal, with bland, beige walls and rows of people packed into every black vinyl seat. They were all waiting patiently, as if they had been through this many times before, facing a large video screen that streamed information about Social Security benefits and what number was next. I asked the guard who checked my bag how to get a number, and he pointed me to two kiosks. When I typed in my SSN, I got a receipt. My number was 74. On the board, the number was 23.

Within a few minutes, I was lucky enough to secure a seat. I was surrounded by families with screaming kids, a lot of adults chatting with friends or partners, and an atmosphere of pure drudgery. There were three staff members seated at desks only visible beyond glass windows in the wall that separated us from them. I started reading the news on my phone.

At least, when you go to the Registry of Motor Vehicles, there are usually a dozen staffers, and you can pretty quickly judge how long the wait will be by how often someone is called up to a window. Here, it quickly became obvious that numbers didn’t get called in sequence (we went from 24 to 27 to 4), and the wait between numbers was at least ten minutes. I did a little math in my head. At that rate, it would take me at least three and maybe four hours to have my turn.

Now, when you are in a waiting game like this, you have to decide early on whether you’re going to invest in sticking it out. Any longer than about 15 minutes, and you begin to feel you’ve invested so much time already, you might as well go the whole way. I left.

When I got home after running a couple of errands (so the time spent wasn’t a total waste), I went online to find out how to make an appointment for my next venture to Social Security. Lo and behold, I discovered that I could apply for Medicare benefits online. Of course. I hadn’t even thought to look in the first place. I guess that’s because I’m almost 65 and still think in terms of doing important business in person.

The whole process took about 15 minutes. I can check status of my application online through my Social Security account. I assume I filled everything out correctly. We shall see. At least I applied with enough time (I hope) to correct any errors. And if I do have to get back down to Social Security in person, I will make sure to force myself out of bed early, get there when the doors open—and bring a book.

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: Social Security Administration via Wiki Commons

Too Cold for Comfort

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It was bone-chilling cold here on Monday, zero degrees Fahrenheit following our first real snowfall of the season. Our street was plowed but remains covered with icy snowpack. Not my kind of weather.

But I had a follow-up medical appointment in the late morning, so I dressed in my warmest layers and set out, figuring that I would park in the garage and only be exposed to the elements for a brief few minutes.

When I arrived on time for my appointment, however, I was in for a much ruder shock than frigid air. The woman behind the desk asked me for my insurance card and ran it through the system. Then she informed me that our policy was inactive.

What??? She said she’d tried running it several times that morning and gotten the same status. She even called our health insurance provider to double-check, while I stood there, heart pounding. Same response.

Did I want to pay out of pocket for the visit? No. It could wait. My new objective was to get home and figure out what was going on.

A little background. Just over a year ago, Al lost his job at the hospital. He has since found a new job that he is really enjoying, thank goodness, helping people with intellectual disabilities live independently. However, his new employer does not offer great health benefits, and given my complex needs, we made the expensive decision to stay with our existing coverage via COBRA, while we wait until I’m eligible for Medicare, now just a few months away.

Back in November, we received a notice that we needed to re-up our enrollment in our health insurance for 2019. Al took care of the details, we continued to pay our monthly premium, and received confirming paperwork that all was well.

Apparently, however, as I discovered when I got home and made some frantic phone calls to both our health insurance plan and COBRA benefits manager, the COBRA people had failed to notify our insurance plan that we were still enrolled.

Just a minor oversight.

They assured me that any medical care we’d received so far in January would be covered retroactively once that notification slunk through the mail from Party A to Party B. This herculean feat should be accomplished sometime later this week.

Certainly, I was hugely relieved when I hung up the phone (and my blood pressure returned to normal). But for the drive home on slippery pavement and the half-hour it took me to get through to the right parties and ascertain that we had not be kicked off our plan, I was desperately trying not to freak out.

For something so essential, it just shouldn’t be this easy for anyone to lose health insurance coverage. I’m lucky. I know it. We have the financial resources to cover our medical insurance costs, even under COBRA, to wait out the transition to Medicare (which, thank goodness, still exists).

But a lost job, a missed enrollment notice, a missed insurance payment, a bureaucratic snafu can leave anyone so vulnerable, especially anyone with serious health issues. This is not a new or revelatory observation. It just hit me like a brick of ice on a very, very cold day.

Our nation needs to fix this. We must.

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: Nathan Wolfe

In Praise of Chocolate

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It’s getting colder out. On Sunday, snow swirled down from the skies when it was supposed to be sunny. Monday we started off in the teens and never got above low twenties. Snow is predicted for Tuesday morning.

I find myself craving chocolate. Not milk chocolate or white chocolate, but serious, bitter-sweet, dark chocolate. Fortunately, Al must have read my mind, because he bought a bag of dark chocolate bark when he went grocery shopping on Sunday afternoon. God bless him.

Dark chocolate is good for you. I know this because the Harvard School of Public Health says so. The flavanols in cocoa help to lower blood pressure, which makes consumption of dark chocolate, which is rich in flavanols, essential these days, given all of the crazy, distressing news. Dark chocolate can also reduce risk of diabetes and heart disease. I’m all for that.

When I was a marketing director at a small New England college, I always had a bowl of dark chocolate sitting out in the department’s open office space. My staff loved it. So did our colleagues, who would come to visit and snag a few pieces. Chocolate makes people happy. It brings us together. Also a good thing at a time of such divisiveness.

Too much of a good thing, of course, can become a problem. If I eat more than I should, the caffeine in dark chocolate can trip my heart arrhythmia. While that’s pretty annoying, it’s also a built-in warning signal that prevents me from gorging and gaining weight from the stuff.

So, I’ll try not to devour that bag that Al bought before the week is out. A piece a day⎯maybe two⎯should ward off the cold and keep my blood pressure in check as the temperatures drop and the news roars on. Just as a preventative, of course.

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: Charisse Kenion

Winter Song

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Many public schools around the country are struggling for lack of resources, and the schools in our city are no exception. But that hasn’t stopped a thriving music program in one of our high schools from training some talented musicians.

Back in May, I wrote about Al and my decision to donate my grandfather’s violin and his father’s viola to our local public school system. I haven’t been able to play the violin for decades as my hands have deteriorated. We hoped that the instruments would enable some deserving students to develop their skills. This past Thursday, those hopes were realized, as we got to see and hear our instruments making music once again

It was the annual Winter Concert at our local arts magnet high school, performed in the auditorium of the next-door middle school. I had never been there before, but we had been invited by the program’s director to attend in thanks for our donation. 

The building is drab, the auditorium cavernous, with wooden folding seats, a mediocre sound system and an aging grand piano that snapped a string during vigorous playing by the choral director. But the program was full of challenging selections, ranging from Bartók to Sondheim. And the students largely rose to the challenge. 

Most impressive was the string orchestra. Their director, who commutes from Boston, has clearly taught the students well.  It gave me such pleasure to watch and listen. All the violinists sat up straight, bowed their strings with excellent form and made lovely music. Our instruments sang again.

Equally as important to me, the string orchestra director treated his students and the concert with respect. He dressed smartly in a tuxedo with a red bow tie and cummerbund for the occasion. He had engaged a wonderful professional opera singer, clad in a scarlet gown, to perform Mozart with the group. The students presented her with a bouquet. There was shared pride in all that they had accomplished together.

We left the concert, which included band, choral and orchestra performances as well, feeling really good. Against significant odds, committed teachers are helping dedicated students rise to their full potential. I’m glad that our instruments have found a good new home.

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: Peter Lewis