Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Raynaud's

January Blues

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Are we there, yet? I mean, springtime. Not even halfway through January, and I’ve had enough, already. I know, I know. Central Massachusetts is not North Dakota or the Yukon or Siberia. My heartfelt sympathies if you live anywhere nearby. But I really, really hate this.

Last week, the Arctic Vortex, or whatever you want to label evil cold weather patterns, sucked all the warmth out of the air. True, we’d been spoiled by unseasonably balmy weather prior to that. But days in the teens and nights in the single digits are not my idea of a good time.

On Thursday, the worst day of all, I decided to brave the cold, regardless, and spend it as planned in Cambridge. This required some strategizing.

I was taking the train to Boston. But Wednesday evening, I realized that neither I nor Al had cash for my ticket, which I had to buy on the train since there is no active ticket counter at our station. I did not want to have to go to the bank on the way, because it was going to be minus-20F windchill and I was not going to try to manipulate the outdoor ATM from my car or leave my car any more than necessary to enter a building. What to do?

Then I remembered my “T” app on my iPhone. Easy-peasy. All I had to do was purchase the MBTA commuter rail ticket and activate it when I got on the train. Just in case we lost Internet service in the morning due to the extreme cold (like I said, I was in high strategy mode), I made my purchase that night. The app came in handy the next morning, too, when I made sure the train was running on time.

My next challenge came Thursday morning. As I confessed last week, I had damaged both Al’s and my car with a back-up mishap that required a new bumper for my Prius and a repaired door on his Civic. My work was completed Wednesday evening. When I went into our garage, I immediately realized:

a) my car reeked of paint fumes; and
b) I had left my car key in the house because Al had driven it back from the body shop.

This required a scramble with the house key, which I managed to drop on the garage floor and struggled to pick up because, well, I can’t easily pick up flat metal objects. So I had to take off my gloves to pry it from the floor. Which made my fingers numb. I said a few choice words.

Once I finally started the car, I knew I was going to have to drive with the window cracked or risk feeling nauseated by the time I got to the train station. On the coldest day of the year. So I cranked up the heat, opened the back passenger window an inch and set forth.

Fortunately, my Prius has a great heater.

For once, I actually got to the train station with enough time to walk to the train without rushing. Ours is a huge, turn-of-the-20th-century station from the grand era of rail travel, so there was no problem waiting indoors instead of on the platform. And, as it turned out, the train pulled in just as I left my car in the open air garage. So I walked through the garage to the station garbed in two layers of sweaters, a wool shawl, wool pants, leg warmers, my heavy down coat, shearling hat, insulated gloves, poofy hood and a warm scarf to hold it all together. I looked ridiculous, but then again, I’m so used to looking ridiculous in weather that most people don’t consider cold that it didn’t really matter. Plus everyone else was bundled head-to-toe, too.

Fortunately, the heaters on the train worked. We pulled out of the station with the car’s front doors stuck open, but a hardy passenger got up from his seat and closed them, since the conductor was nowhere to be seen. I spent the next hour-and-a-half working on a client project on my laptop, very pleased to be riding and not driving in what proved to be horrible traffic, from what I could see on the Mass Pike Extension as we neared Boston.

The worst part of my trip was the walk from the train platform into South Station, bitter cold. Once inside, it was tolerable on the way to the Red Line. My next excursion outdoors—from the Red Line exit to the inside of a Marriott where I waited for my friend to pick me up—left me a bit queasy from breathing frigid air, even through my scarf, but the feeling passed once I got in the building.

Reversing the trip later in the day, I was glad I hadn’t let the bitter weather get the better of me. I relaxed into my seat on the train, noted the horrible traffic westbound on the Pike Extension with smug satisfaction, then returned to working on my novel for the rest of the ride home. My Prius still smelled like paint fumes, even after airing out in the station garage all day, but the heater kicked in quickly enough so that I could crack the window on the short drive to our house and still stay comfortable.

Best of all? When I pulled into our driveway, it was just barely sunset at a quarter to five. The Ice Man may still cometh, but at least the days are getting longer.

Photo Credit: Sangudo via Compfight cc

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.

Power and Light

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I have a new item on my to-do list: Figure out whether we should stick with our current (no pun intended) electricity supplier, or find a more competitive source. This is important, because the rates are jumping on January 1, and we rely on electricity to power our heat pumps, which I rely on to stay warm and keep my Raynaud’s in check.

We switched over to the pumps from oil heat a couple of years ago, in an effort to make our home more energy efficient. We’ve certainly saved a lot on oil (only use one tankful a year, now), but I have to be very careful how I use the heat pumps, to manage our electric bill. There’s a pump in each room, which allows for customized, zoned heat. I try to limit which pumps are on according to where I am in the house during the course of the day.

For the most part, the heat pumps work well, but when the temperature drops below about 15 degrees Fahrenheit, we have to revert to a mix of oil and baseboard electric heat. Also, there have been days already when it’s just been so windy and cold that I’ve turned on the baseboard heat (less efficient, supposedly) in my little office and the kitchen, because it feels more even.

So, Sunday night I began sorting through all the potential options and learning about kilowatt hour charges for electric supply, plus distribution charges and more. It’s a lot to tackle, and we need to figure it out before January 1, when the rates jump.

There are many other things I would rather be doing right now than a cost-benefit analysis of our electrical supply options.

On the other hand, I’m glad we at least have options and aren’t necessarily stuck with a big rate hike. And I’m very grateful to have the means to keep our home warm enough for my body, with my broken internal thermostat, and a husband who doesn’t mind the added expense.

It’s just a cost of living with scleroderma in New England.

My quest for more cost-efficient power comes as we begin the festival of Hanukkah. We light the first candle this evening. I look forward to this holiday every year, because it always falls near the Winter Solstice. So with each candle that we light for the eight days of the festival, we’re getting closer to the point when the days will start getting longer again. Just knowing there will be more sunlight soon always gives me a boost, despite the cold temperatures outside (and higher energy bills, whatever the source).

When you light Hanukkah candles, you’re not supposed to use them to illuminate a room or as a source of light for work. You’re just supposed place the hanukkiah, an eight-branched candelabra, in a window, where the flickering candles can be seen from the street—silently, peacefully conveying their profound message of religious freedom and liberation from oppression.

Power and light come in many forms. On Hanukkah, both are free.

Happy holidays.

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.

Photo Credit: ** RCB ** via Compfight cc

Around the Block

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I’m not yet used to earlier sunsets. It always takes me a few weeks to adjust when we turn back the clocks for standard time. On Friday afternoon, I was running around, trying to finish errands before sundown, which heralds our Shabbat observance, and just made it home as dusk settled. Whew.

Back to my desk on Monday, I lost track again, this time because I was immersed in my writing, only to realize it was nearly 4 o’clock in the afternoon and I had not yet walked Ginger. I should have taken her out when it was brighter and warmer after lunch, but she needed the exercise. I did, too.

So, despite the darkening, chilly fall afternoon (for me—others I passed were in fleece vests or zip-up jackets), I donned my down winter coat and a hat, clipped Ginger’s leash to her collar and headed out the door.

A lungful of fresh air immediately helped to clear my brain, woolly with words. Ginger paused by the huge pile of dried leaves in front of our curb to explore the many and varied, fascinating scents. Our walks take longer this time of year, until all the leaves have fallen and city streets are swept clean. I have to urge her to keep walking so my hands don’t go numb.

“That dog is amazing,” commented our neighbor, walking her puffy little pooch in the opposite direction. Our white-faced golden is 16, but still can pull me down the street if she has a mind to. My neighbor’s dog decided to lie down in the street and watch us, but Ginger, whose nose is better than her ears and eyes, ignored it and kept on snuffling, leading me slowly forward.

Around the corner, two boys in shirtsleeves shot hoops in a driveway. Everything glowed with a deep orange patina—the piles of rakings along either side of the street, the Norway maples that still clung to a few golden leaves, Ginger’s fur, the errant basketball that rolled across our path. “How are you?” asked the boy as he ran to retrieve it. We exchanged pleasantries, and he loped back to his game.

A friend wisely observed over the weekend that all the frightening headlines (Ebola! ISIS! Washington Gridlock! Climate Change!) that describe a world in seeming collapse don’t really square with everyday experience. Most people are good. Many strangers can be trusted. A 12-year-old boy can be polite to a woman walking her old dog around the block.

As we rounded the next corner and headed up a slight hill, the sky turned salmon and violet. For a few astounding seconds, the trees and leaves seemed infused with an etherial, rose light. If I hadn’t left the house with Ginger at the exact, too-late moment, kicking myself for forgetting about the time change, I would have missed it.

Home again, dark settling in, I rubbed Ginger’s ears and thanked her for inspiring me to get out of the house. Sometimes the best part of the day is the part you wanted to avoid.

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.

Au Naturel

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Every fall, as the days grow shorter and the temperatures sink, I start looking for a new sweater to add to my collection. This can be a challenge. While there are plenty of warm-looking sweaters on store racks, especially as the holiday shopping season fast approaches, you have to be a fiber detective to be certain they’re really worth buying.

The less expensive the sweater, the more likely it’s made of synthetic materials, such as nylon or acrylic. Pretty as that pullover or cardigan may appear in the store, and attractive as the price tag may seem, it’s usually not worth the purchase. Not only do synthetics wear out faster with repeated washings—they really don’t keep you warm.

I’ve learned from many buying mistakes that polyesters and their man-made fiber cousins trap perspiration, which only exacerbates my Raynaud’s—chilling my body and numbing my hands.

So I always read labels inside the garment before buying a sweater. My latest find was a wool/alpaca blend, three-quarter-length taupe sweater by Ellen Tracy for $49 at TJ Maxx. I wore it for several long days over the past weekend and stayed comfortable through hot/cold cycling of heating systems in private homes and board rooms. Definitely a worthwhile purchase.

A good wool sweater, with proper care, will last for decades. I have three long-sleeve cashmere sweaters that I bought at Bloomingdales about 20 years ago that are only now wearing through at the elbows. They were investment buys back then, but I certainly got my money’s worth of wear.

Best fibers for sweaters, in my book, are wool and cotton. Rayon, which is man-made but derived from wood pulp, and silk, are favorites for blouses. Linen is also worth considering as long as you don’t mind wrinkles. All natural fibers have the wondrous ability to wick away sweat and allow your body to breathe—essential for moderating body temperature and avoiding chills.

Layering, of course, is the other key to staying comfortably warm in winter. But layering synthetics with natural fiber garments essentially traps air and cancels out any advantage of the breathable fabric.

So here’s to all those wonderful, warm clothes derived from nature’s bounty. Thank you, sheep, for your wool that keeps my body from going numb this winter season—and many winters to come!

Photo Credit: kygp via Compfight cc

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.

Just a Cold

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I’m kvetchy. I have a cold, and I feel crummy. I know there are many more serious maladies out there, and this too shall pass and all that, but right now, my nose is stuffy and I’m schlepping around with a box of tissues and a plastic bag in hand because I’m going through the tissues so fast, and I’m coughing and sneezing and, and . . .

4048824638_c249f3e4e6_oOne of the things I hate most about colds is how they set off my Raynaud’s and joint aches in the first 48 hours. I also hate struggling to breathe at night and not getting a good night’s sleep. My nose is so narrowed by scleroderma that nasal congestion can be a real challenge.

And I hate being in the middle of cooking and realizing my nose is dripping and having to stop what I’m doing, grab a tissue, blow, toss it, clean my hands so I don’t make the rest of the family sick, then go back to what I was doing, only to have to repeat the same rigamarole a few minutes later.

And I hate coughing so much that I can’t finish the meal I just cooked.

But most of all, I hate the fact that everyone refers to this condition as “just a cold.” Because minimizing a respiratory virus to “just a cold” status means that everyone walks around with “just a cold” and gives it to everyone else, instead of staying home and taking the time to get healthy. And not spreading their germs.

When I was a marketing director in higher education, I used to urge my staff to go home if they started sneezing or coughing a lot, to get better and to spare the rest of the department. Sometimes this took a bit of persuasion, because we’re all conditioned to keep working with “just a cold.” Usually I prevailed, however, and most everyone in our open office space appreciated it. And stayed healthier, as a result.

Being cognizant of how we’re not doing anyone any favors by walking around when we’re sick is particularly relevant in light of the news media’s current obsession with the Ebola virus. Ebola is often fatal. It is scary. It is transmitted by direct contact with an infected person’s bodily fluids or contaminated objects, like needles or syringes.

But Ebola is nowhere nearly as contagious in public spaces as influenza, which can be deadly and is spread by sneezing and coughing. By people who don’t bother to stay home when they mistake the flu for “just a cold.”

Consider this a public service reminder to get your flu shot if your immune system is compromised or you have asthma or other respiratory complications. Or any kind of chronic illness.

I’m going to get my flu vaccination this weekend, at a free clinic offered by my health care provider. That is, assuming my “just a cold” has finally cleared up.

Meanwhile, I’ll be loading up on fish oil and Vitamin C and hot tea and soup. And kvetching.

Thanks for listening.

Photo Credit: stevendepolo via Compfight cc

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.