Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

mindfulness

Midwinter Break

· · Leave a Comment

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.

First Attempt

· · Leave a Comment

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

Excuses, Excuses

· · 2 Comments

My desk is a mess. So is my office. Stuff is being fruitful and multiplying when I’m not looking. Honest.

I blame this cluttered state of affairs on my hands. It’s hard to pick up piles of paper and sort and file, because I’ll inevitably bang my fingers. There’s not enough room to properly store my books. I need to have that stack here and this stack there for easy reference. Right.

Then again, I like having lots of interesting stuff around me when I work. There are my little turtle statues to play with. And a bronze T-Rex that I got when I was maybe five years old at the Museum of Natural History in New York. And a cube that I can rearrange to show various paintings by Edward Hopper, depending on my mood.

Of course, I must have at least two pens nearby and a red marker and yellow highlighter and pencils to keep track of my work progress in my handy Bullet Journal. (Yes, I’m addicted.)

And how can I NOT have that pile of reference books on the side of my desk? Or those mail solicitations that I need to remember to follow up? Or those really cool beads that I bought on sale last week to string into a necklace?

Then again, it would be nice to have a clear space in front of me and to get rid of those papers I really, really need to shred, already. And move that stack of old files to the cabinet in the basement. And make some decisions about what stuff is truly necessary.

Al has offered his hands to help anytime. Maybe when I can no longer move in here, I’ll take him up on it.

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.

Snap Judgment

· · Leave a Comment

Even as I’ve adapted to my “revised” hands a year post-surgery, sometimes they still spring a surprise on me. I was working on a sewing project on Sunday, feeling quite pleased with myself that I could manipulate the fabric, stitch with great accuracy on my sewing machine, serge precisely to finish raw edges, iron and steam as I went along to get the right finish.

Then I noticed some red stuff on the handle of my iron. At first I thought it was just some shmutz from the fabric, which is a reddish brown and tends to shed. Then I looked at my right hand. Sure enough, without realizing it, I had cut the tip on my right ring finger.

Now, this can happen to anyone, I suppose, but for me the issue was that I didn’t feel the cut at all. This is one of my fingers that was partially amputated last fall due to ulcers gone wild, and the nerves at the tip are no longer as sensitive as they once were. Fortunately, the cut was only superficial, and I hadn’t dripped any blood on my project, which would have been a mess. But it was disturbing.

How could I have missed it? As I cleaned and bandaged the finger, I reviewed what I’d been doing in the past hour or so. Then it dawned on me: I have a lot of trouble manipulating pins for this project, because some of the fabric is densely woven and my fingers are now too short to leverage even a long, glass-head pin through all the layers. So I had tried using small binder clips, instead, to hold the pieces together. But I couldn’t pry them open far enough (again, an issue of finger strength), so I used a pair of pliers—and the clip snapped away from the pliers and nipped my finger. Ouch. It smarted, but eased up, so I didn’t think I’d really hurt myself. Apparently, however, that’s what did the damage.

I was able to keep sewing after I took care of the cut (and wiped the blood off the iron handle). I’m very happy with my slow but steady progress. But I realized that I have to be more vigilant when I’m using sharp tools. I may have learned how to use my hands again, but they are simply more fragile than they used to be, and I must pay closer attention to any pain sensations, even muted. Nerves are a first line of defense, to warn us when we’re endangering ourselves—but the sentinels in my fingertips are no longer operating at full strength. Time to call in the reserves.

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.

The Poppies Grow

· · 6 Comments

Sunday dawned sunny and brisk here, one of those sharp-shadowed November days when the light accentuates every ridge of bark and edge of brick like a finely detailed etching. I bundled up in multiple layers and headed downtown for our city’s annual Veteran’s Day parade, not out of habit, but because this was no ordinary November 11. It marked the 100th anniversary of the end of World War I, and I wanted to be present.

For the past few years years, I have been working on a novel set in the Great War, in 1915, and my research has given me a deep respect for the tremendous sacrifices made during that horrific conflagration, as well as for the ways in which the Treaty of Versailles that redrew post-war boundaries on three continents shaped so many of the geopolitical conflicts that we face today.

Four summers ago, Al and I traveled to Europe so that I could gain a stronger sense of place for my novel. We walked overgrown trenches, witnessed corroded but still live munitions that continue to emerge from Belgian soil (the so-called Iron Harvest), paid respects to row upon row of white grave markers in military cemeteries, discovered delicate red-orange poppies waving in Flanders Fields. They flourish in old battlefields because they favor earth that has been disturbed.

And the earth was disturbed, shredded, pounded to a muddy, barren pulp. Millions upon millions died defending, gaining, losing, regaining mere yards of turf between the trenches. In the end, the so-called peace treaty for the War to End All Wars imposed such economic hardship on Germany for its aggression that Teutonic desire for revenge set the stage for World War II.

I thought about all this as I watched the bag piper stride beneath an archway made of a huge American flag held up by two opposing fire truck ladders, as a handful of aging Marines in their red jackets and caps passed me carrying the Stars and Stripes, as units of JROTC high school students marched by in uniforms, as police rumbled past on motorcycles. The crowd was thin but respectful. A little girl handed me an American flag to wave. My fingers went numb every time I took a picture, because it was just that kind of chilly New England fall day.

The parade culminated at a memorial to World War I veterans that marks one of the entry points to the city’s downtown. I had passed it many times over the years, but never actually entered—a semi-circular granite wall engraved with the names of battles where Americans died in the War’s last year, surrounding a modest plaza with a flagpole. The mayor spoke of local residents who served and died in the War. He drew parallels between then and now and the divisive, dangerous politics of our times. Other city officials made a few remarks and laid a red-white-and-blue wreath at the flagpole’s base. A soldier read In Flanders Fields by John McCrae.

When we were in Belgium, we visited the site of the field dressing station where Lieutenant Colonel McCrae, a Canadian surgeon, artist and poet, saved soldier’s lives and wrote his famous memorial lines. That is where we found the poppies, still growing. They were wild, scattered amidst the high grass, smaller than I had expected.

McCrae’s poem ends thus: “If ye break faith with us who die | We shall not sleep, though poppies grow | In Flanders Fields.” On this centennial, with so much at risk in the world, I hope and pray that we can remember the somber lessons of World War I, the tremendous sacrifice of life, the hardships and grief and loss, and find our way through this difficult time to true and lasting global trust and cooperation for the betterment of all. Nothing less than the future of our planet hangs in the balance.

Poppies in Flanders Fields, Belgium

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.