Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Sight

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

In the Purple Zone

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It’s been a yoyo week of weather, bouncing from seasonal cold to single digits to the fifties today. I’ve had Raynaud’s for so long that I barely notice the constantly changing cold sensations in my hands and feet⎯unless they go numb, of course.

But over the weekend, a friend asked me for some advice for her teenage daughter, who has developed the tell-tale signs of primary Raynaud’s (as opposed to secondary Raynaud’s, which, as the term suggests, is caused by another underlying condition such as scleroderma). When she is cold or stressed, her fingers turn purple, sometimes white and painful.

So this gave me pause as I reviewed for my friend what I’ve learned over the years. Given the crazy cold weather across the country, it’s worth repeating for those who may be new to the condition:

  • Keep your torso warm. While your first thought may be to focus on your hands, if you protect your torso from the cold, your extremities will have access to better blood circulation. Layers are key, here, and the type of fiber matters. Which brings me to . . .
  • Favor natural fibers for clothing. Cotton and wool both wick away moisture and allow skin to breathe. Polyester and other synthetics trap perspiration and can make you feel chilled. Silk is lightweight and has the dual advantage of keeping you warm in winter and cool in summer. I have a silk liner T-shirt that I’ve worn in extremely cold weather for decades; the investment pays off.
  • Get mittens. They may not fit your fashion sense, but they definitely keep your hands warmer than gloves. Avoid synthetic fur liners. Look for insulated mittens that repel moisture. Some people favor battery-heated mittens, the kind you get at hunting stores, but I have never used them.
  • Use wrist-warmers. My favorite brand is Wristies, affordable fleece warmers that come in all different colors, in various lengths, even with pockets for heat packs. I use them year-round, to keep my hands warm in winter and protect them from air conditioning in summer.
  • Wear a hat. Just as keeping your torso warm helps your extremities, so does wearing a hat on cold days. This was one of the first tips I got from my rheumatologist. Recent studies place heat loss through your head at about seven to ten percent. It’s the common sense reason behind old fashioned nightcaps (which I don’t wear) and a good excuse for buying a nice hat (which I do).
  • Wear properly fitted shoes. Pinched toes restrict circulation, which can exacerbate Raynaud’s vasoconstriction. I also look for shoes that breathe, which is why, even as I don’t eat meat, I prefer leather footwear for winter.
  • Turn up the heat. This is a mortal sin for many hardy New Englanders, but I’m fortunate to be married to a local who accepts my need for a warm house and the associated expense (even as we strive to be environmentally responsible with attic insulation and good windows). As I said to my friend about her daughter, take her complaints seriously that the house is too cold. She’s not whining. It’s real.
  • See your doctor. If your hands or feet are consistently numb and you’re experiencing persistent discomfort or pain, talk to your doctor. Protect breaks in the skin, as poor circulation can lead to ulcers that won’t heal and may get infected. There are a range of medications that can counter vasoconstriction, but you’ll need to experiment to see what works and if it’s worth it 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.

Image: invisiblepower

In Bloom

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With more Arctic vortex action promising to bring us frigid weather this Thursday (7°F, anyone?), it was a gift once again to enjoy beautiful floral arrangements this weekend at the Worcester Art Museum’s annual Flora in Winter display.

That, plus the good news that our health insurance was, indeed, reactivated following last week’s debacle made for a promising start to the week. So, Dear Reader, I bring you some of my favorites as reminders that spring is only a few months away (and I sincerely hope the weather matches the calendar).

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.

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

Grand Entrance

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Almost every Wednesday night, I take a break from writing and join friends at a nearby weaving studio. It’s kind of like an old-fashioned quilting bee, sharing stories as we work on our individual looms, creating Saori textiles, a form of Japanese freestyle weaving. It’s meditative and relaxing and a good reminder that beauty is everywhere around us.

Just one problem: I have a backlog of woven pieces at home, waiting for me complete them. For months, my colorful textiles have been lying in a pile on one of our dining room chairs, taunting me.

“When are you going to get around to us?” they seem to ask. “You were so enthusiastic when you took us off the loom. What gives? Don’t you care anymore?”

Well, yes, but there’s been so much else to do.

“No excuse! Your hands have healed. You can do this!”

One piece, in particular, has waited nearly eight months for me to complete⎯a bright, multicolored textile to replace the tattered curtain on our kitchen door. Last spring I had come close to completing it, machine sewing a yellow cotton border to the sides. Then, in a rush to finish (always a bad idea), I had flipped over the top edge to make a channel for the curtain rod, but stitched the fringed edge to the back instead of the front.

Picking out all those stitches was more than I could handle. I also realized that, even with the yellow border, the piece was still too narrow to cover the kitchen window. Discouraged, I put it aside and didn’t touch it again until my younger daughter came home for a visit over the December holidays and, with her very nimble fingers, took out the stitches for me.

Buoyed by this fix, I bought some turquoise cotton fabric to extend the edges. And this weekend, I finished the curtain, with the help of a new iron (I’d dropped my old one and broken it sometime over the summer), a more accessible storage solution for my ironing board (no more dragging it up from the basement) and some fusible sewing tape that enabled me to avoid using pins, which I find quite difficult to manipulate.

Persistence paid off. The result makes me smile. And it’s a cheerful reminder that, despite last year’s major hand surgery and months of healing, I can still make something beautiful.

Before . . .
. . . and after!

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.