Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

managing chronic disease

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

Let It Snow . . . Sort Of

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It’s chilly and damp and just plain yucky outside as I write on Monday evening. I have my legs wrapped in a blanket to ward off the cold, even with the heat on in my home office. I’m wearing sweatpants and two layers of sweaters, plus my wrist warmers. Every so often I take a break to walk around and get my circulation going.

Ah, November in New England. It was brutally cold on Thanksgiving. Fortunately, I only had a short run from the car to our cousins’ front door, and otherwise stayed inside. The weather outlook this week is alternately rainy and chilly, but at least not snowy again for a while. Famous last words.

Every year, around this time, I try to stave off my winter blahs by reading the long range winter weather forecasts. It’s kind of my own version of wondering if the groundhog will see his shadow. Knowledge is power, right? If I know how cold it’s supposed to be, then I can be prepared.

Well, so far, the predictions for the Northeast U.S. are mixed. According to the National Oceanic and Atmospheric Administration (NOAA), we’re supposed to have a warmer than average winter up here. The southern states are supposed to get more precipitation than normal. You can see the whole forecast here.

On the other hand, Boston forecasters are expecting a stormier winter season, drawing on the El Niño effect and historical data. Ugh.

I know, I know. I need to get over it. Whatever comes will come. It’s just the transition is always hard. In any case, I had my snow tires put on last week. At least my car is ready.

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: Emil Vilsek

Snap Judgment

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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.

What I Want

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I want to write something positive, but I’m having a hard time. The events of the past week and weekend are weighing heavily on my mind, and to pretend otherwise would be disingenuous.

Back in the ’70s, when I was in graduate school at Carnegie-Mellon in Pittsburgh, I lived in Squirrel Hill. I was not involved in Jewish life at that time, but I remember the community fondly, as an intimate, comfortable urban neighborhood where I felt safe walking any time of day or night. I received my master’s degree in public management and policy analysis from what is now the Heinz College at CMU, at a graduation ceremony in a synagogue near the university—not the site of Saturday’s massacre, but a few blocks from there.

It is heartbreaking to comprehend what happened at the Tree of Life Congregation Synagogue on Shabbat. Just as it’s terrifying to comprehend that a dozen-plus pipe bombs were sent to critics of the president last week. Thank goodness the bombs never exploded and that the alleged bomber was quickly apprehended. So much violence that the fatal Kentucky shooting last Wednesday of two people of color by a white man who had been unable to enter, and presumably attack, a nearby, predominantly black church was barely noted by the national media

I could tie these events and so much other bad news (climate change, anyone?) thematically to the issue of stress and how it affects health, so that I could relate it more directly to the focus of this blog. But what’s happening to us in America today is about much more than that. So much that I have taken for granted about our democracy feels like it is unravelling. It seems as if we have reached some monstrous tipping point, and that more blood will be shed before we get through these dark times.

I try to remind myself that I grew up in the ’60s, when there were riots in the streets, we practiced duck-and-cover in grade school against the threat of nuclear attack, the Vietnam War was raging, and political leaders were assassinated. Our nation survived all that. Somehow, we have to get through this, too.

I want to live in a country that champions empathy over narcissism, that respects the rights of individuals without shredding civility, that prizes heart over hate. I want fair and free elections. I want the voices of calm and reason and hope to prevail over the voices of anger and fear and divisiveness.

I have to believe we are all better than this. As of this writing, a group of Muslim Americans has raised more than $130,000 to help Jewish victims of the Pittsburgh synagogue massacre. This is the true spirit of America. This is the America we need to cherish and support and strengthen.

Election Day is one week from today. Please. Vote. The health and future of our democracy depends on us all.

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 Credit: Zoran Kokanovic