Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

how to stay warm

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

Futurecast

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I wore my long winter coat this weekend. Not the heavy-duty one, but the medium weight, good-for-when-it-gets-below-50F-degrees-coat. And a warm hat. And gloves.

Book of SnowflakesIt’s only the beginning of October, but I’m already pulling out my sweaters and sweatpants, fleece vests and scarves, wool trousers and skirts, as the temperature sinks. This is always the time of year when I feel a bit self-conscious about bundling up while my neighbors are still walking around outside in windbreakers. But I’d rather be warm and keep my hands from turning purple and numb.

According to the Old Farmer’s Almanac website (is it just me, or does that sound like an oxymoron?), this winter in New England will be “much colder than normal, with near-normal precipitation and below-normal snowfall.” Looks like we’re in for a bit of snow before the calendar year is over, then just a lot of frigid temperatures until mid-March.

That is, if you believe the Almanac’s predictions. They claim 80 percent accuracy.

We were discussing this with family and friends at Al’s cousin’s home over the weekend. Those who commute by car and park on city streets were rooting for the Almanac—less to shovel sounded pretty good after last winter’s snow emergencies. For me, however, the words “much colder than normal” are more forbidding than snow storms (until the snow piles so high there’s nowhere to put it).

My winter weather trepidations are tempered by living in a landscape so romanticized by Currier and Ives. New snow is beautiful. It’s clean and sparkly and magical. I always enjoy the mystery of the first snowfall of the season, how it transforms trees into spun sugar.

Nonetheless, snow, by definition, means the temperature is below freezing, and my body just doesn’t adjust easily to the shift. We’re not there, yet, but as I walked Ginger, our 16-year-old golden, around the block on a sunny, crisp fall afternoon this Sunday, I could feel the season’s change in the wind.

Was it still, technically, summer just about a month ago? I have more digital ulcers, more bandages. I’ve turned on the heat pumps to warm the first floor of our home while I write in my small office, just off the living room. I’m wearing long sleeves and a warm cardigan.

Snow or no snow, the idea of “much colder than normal” sends shivers throughout my body. Nothing to do but make sure I have enough layers and brace for whatever winter weather lies ahead. At least we still have the best of the fall foliage to enjoy for the next couple of weeks.

Would I ever move to a warmer climate? I don’t know. I love my home, my community. Much as I struggle with the temperature shift each fall (spring brings its own unique challenges, too), I love all four seasons here.

So, pile on the sweaters and boil up the oatmeal. Colder weather? Bring it on.

Image Credit: Illustrative plates from Snowflakes: a Chapter from the Book of Nature (1863), a collection of poems, extracts, anecdotes and reflections on the theme of snow and the snowflake.  See more: http://publicdomainreview.org/collections/illustrations-of-snowflakes-1863/.

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.

Defrosting

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Was it really just last week that we emerged from the deep freeze? Monday afternoon, as dusk was settling, I took Ginger for a late walk and didn’t mind her noodling around, sniffing every other lamppost. This would have been unthinkable a week ago, as the ominously dubbed Arctic Vortex clenched half the country in its icy swirl.

Early last week, as temperatures hovered in the single digits, I barely emerged from my home. If Ginger wanted out, I opened and shut the door as quickly as possible, to avoid the frigid air. We switched over from our heat pumps to our oil burner, since the pumps don’t function efficiently below 10 degrees. My skin dried out. My digital ulcers erupted.

Now, following a delightful weekend in the 50s, my fingers are barely beginning to heal again. A new shipment of fabric bandages (I favor Coverlets, only available by mail order, for their softness and flexibility around my sensitive fingertips) arrived on time, thank goodness, because I was running through boxes of 100 far too fast.

With supplies replenished (I order 1,000 bandages at a time), I’m steeling myself for the next arctic onslaught. That’s right, it looks like we’re going back into the meat locker. The National Weather Service’s 14-day outlook predicts lower than normal temperatures for all of us east of the Mississippi. If you live in the other half of the country, you’re in for warmer than seasonal temps.

According to one hyperventilating summary of upcoming weather that I read, we could be dealing with icy cold into the beginning of February. The author quipped that it will be like those winters your grandparents remember.

This thrills me to no end. But then, I remind myself, this is New England, not the upper Midwest, where temperatures dipped to 40 below over the past few weeks. (My sincere condolences. Really. I cannot imagine surviving there.) Our favorite saying here is if you don’t like the weather, just wait a minute.

Time to get ready. I need to get my well-worn sweaters to the dry cleaners, so they are fresh once again. I need to drive my charcoal grey Prius through the car wash, to rid it of a thick coat of road salt that makes it looks as if someone clapped erasers all over a chalkboard (does anyone use these anymore?), before it gets so cold again that the water will freeze the doors shut.

Most importantly, I need to get my mind wrapped around the fact that I cannot do anything to predict or prevent extremely cold weather. It doesn’t really help to read 14-day weather outlooks, because it will all change, anyway. There is no way to know how whatever freezing cold will impact my hands further until it arrives.

A century ago, the great Antarctic explorer Ernest Shackleton kept his men alive for two year when their ship, the Endurance, became ice-locked and eventually sank on an aborted expedition to traverse the continent. One of the keys to his leadership success and their survival was to encourage his men to play—igloo building contests, dog sled races, singing.

Maybe that’s the best way to prepare for the next deep freeze—tune out the weather forecasts and tune in some great music.

Photo Credit: Sharon Mollerus 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.

Biker’s Paradise

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In three weeks, it will officially be winter. But January temps arrived here last week, way too cold, too soon. Mornings and evenings in the teens, bitter windchill, the works—only the snow hasn’t arrived, yet.

All of this made me realize that I need to solve a big problem I’ve been ignoring—I need to replace my very worn-out, favorite, red-suede, insulated winter gloves. The holes in the right hand can’t be mended and are growing bigger with each wearing.

Now, for most folks, this is not a big deal. Especially at this time of year, stores are well-stocked with rainbow displays of gloves of all different materials, styles and warmth. But my fingers are much shorter than an average size 7 glove, what I’d wear if I had normal hands. I don’t.

Due to complications with severe Raynaud’s and my scleroderma, my fingertips have all resorbed to stubby nubs. The longest finger on my right hand is only 2¼ inches long. I often have several fingertips bandaged to protect my ulcers. So normal gloves always have about an inch of extra fabric at the top that flops around and makes it hard to pick up things. Also, the fingers are often too narrow to accommodate my bandages. Children’s gloves are too tight.

I lucked out with those red gloves several years ago at a random fundraiser trunk sale. They have Thinsulate lining and roomy fingers that are shorter than standard gloves. No tag. No way to trace their origins.

So, replacing them called for some creative problem solving. I turned to the Internet and googled “women’s gloves short fingers.” At first, all I found were gloves for cyclists without fingertips. I kept looking. There were sites for outdoor adventurers, but those gloves cost a fortune. Custom-made gloves were out of the question.

Then I discovered sites for bikers. A goldmine. It would never have occurred to me, but, of course, bikers need warm gloves for cold weather—sturdy, insulated, flexible leather gloves for gripping motorcycle handles.

The idea of walking into a biker shop, however, felt a bit intimidating. I’m sure I’m guilty of stereotyping, but I’m about as far from a biker as you can get. So I did some more online search and found a great biker retail store near Boston. They sell very affordable leather gloves in a range of sizes, with wide fingers that look slightly curved. Perfect.

I could have emailed, but I decided to call. A pleasant woman named Melanie answered. I explained my dilemma, that I have very short fingers and wasn’t sure what size to order.

“Oh,” she said, “you’re just like me! I have short fingers, too. I hadn’t thought about gloves, though, because I put my bike away for the winter.”

I confessed I wasn’t a biker and described the details of my hand issues.

“You’ve come to the right place,” she said. “Biker gloves come in all different sizes, for a great price.” This all made perfect sense. A real niche market.

She offered to go try on some gloves and report back. We determined that her tallest finger is about a half-inch longer than mine. A few minutes later, Melanie returned to the phone.

“I’m trying on this pair of smalls, and they are quite comfortable on me,” she said. “You might even try the extra-smalls.”

“Are you sure they’ll be wide enough across the palm?”

“I have very square palms,” she said. “Where’s that measuring tape?” She determined that her palm was 4½ inches across to the outside of her thumb joint.

“Okay, let me check,” I said. We were both laughing at this point, comparing these intimate details of our physiognomy. My measurement was about a half-inch shorter. The extra-small sounded like the right size. She assured me that the style runs to a triple-extra-small and likewise in the other direction, and that they take returns and exchanges.

I thanked her for her help and placed my order online. The gloves should arrive in a few days. If they don’t fit, I’ll drive to the store in my Prius, meet Melanie and find the right pair. I may be an unusual customer, but then, hands are hands. And it’s an adventure. Who would have thought my scleroderma would land me in a biker’s paradise?

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.