Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

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Coat Check

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Would someone please explain to me, when it’s still 50 degrees out, why stores are out of coats? I know it’s the end of April, but we’re far from the dog days of summer here in New England, and I don’t do all my shopping online.

104419903_e9171aaf64I discovered this strange fact of retail seasons over the weekend when I went hunting for a coat to replace my old spring/fall standby, which I’ve worn for at least ten years and is looking its age. I had a simple mission: find a shorter, wool coat that will keep me comfortable during transitional weather. Apparently this is something I should have thought of last August.

When I walked into a local Burlington (formerly Burlington Coat Factory, an off-price retailer specializing in outerwear—where I bought my now-ratty coat a decade ago), I encountered racks of summer shifts and prom dresses and all kinds of sports clothes. But where were the coats?

I asked a sales clerk. She brought me deeper into the store and showed me a few aisles amidst all the other clothes. “It’s the end of our coat season,” she said. “You’ll find the smalls over here.”

Did I mishear? I thanked her and went to look. There was one rack of small coats—including left-over winter jackets, a few raincoats and a collection of picked-over styles that clearly weren’t going anywhere. I walked around to the other side. All mediums. The next row were large and plus sizes. That’s it.

How could this be? I came here because of the coats. It can snow here in April. I know everyone else is running around in shorts and flip-flops because the sun is out, but I’m still cold, dammit!

So I started picking through the rack. I tried on long coats and short coats, designer labels and unknown brands, black, taupe, camel’s hair, red. Nothing looked good. They were either too big or too long in the sleeve or too wide in the back or too tight. Another woman was sifting through the rack, and we commiserated.

I was about to give up my quest when I discovered the clearance rack, with a few smalls mixed in with the rest. And there, hiding between an ugly black wool duffel and another black coat with a garish brash zipper, was a chocolate-brown-wool Calvin Klein trench, mid-thigh. I tried it on. The back didn’t ripple or buckle. The sleeves were roomy and didn’t bind. The pockets were in the right place, easy for my hands. I liked the color and the cut. And it cost only $55. The only drawback was the fact that the sleeves were a bit long, but I figured, at that price, I could always have them altered. Meanwhile, they’d keep my hands warm.

So, I bought it. One of life’s little victories. I’ll be wearing it when the rest of the world is going barelegged, but at least I’ll have style.

Photo Credit: Doug Ellis via Flickr

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.

A Dog’s Life

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Last week, on Friday the 13th, we lost our wonderful Ginger. At 16 ½, she had outlived the average Golden Retriever by almost five years. But still, her end came too soon.

It all started when Mindi wrote a grade school report about Goldens. After our first dog died in 1998, she was adamant that if we ever got another, it had to be this breed. About a year later, we began our search, and in October of 2000, we learned of a family that was looking to sell a two-year old, pedigreed Golden.

As Al arrived at the owners’ home, he noticed an electric company truck in their drive. It turned out that the family was behind in their utility payments and about to have their power shut off. So he went to the bank, withdrew $200 to pay their bill and got Ginger in exchange. She jumped in his car and never looked back. That afternoon, Al greeted Mindi and Emily after school with Ginger in tow. At first, they thought he was just holding her for another parent. Needless to say, they were ecstatic to learn she was our new pet.

Neglected by her owners, ten pounds underweight, loaded with fleas (we soon discovered), never spayed, she needed a lot of love and attention. She took refuge under the kitchen table, and that’s where we placed her new bed. But she often liked to sleep on the hardwood floor, perhaps because that’s all she knew before coming to us.

At first, Ginger didn’t have quite enough energy to walk all the way around the block. But as she put on weight and gained strength, she gleamed and grinned. And, despite the former owners’ claim that she would swipe the baby’s meal, she never stole food.

In fact, she never stole anything that I can recall. She never climbed on the dining room table to snarf up a pound cake, like my childhood beagle, Snoopy, nor snatched socks and tissues, like our first dog, Sukki. She never snapped at us, only at dogs that got in her space. She only ran away once, chasing after a skunk on a frigid January night. When Al found her and brought her home, she reeked as she galloped around the house. I don’t recall how many baths it took to remove the scent.

Simply put, Ginger was just a love bug. Hugs and ear-scratches and snuggles were her ambrosia. She adored company and was totally oblivious to social cues from anyone who was skittish around dogs. Any resistance to her sweet face just encouraged her to persist until she got a pat on the head.

The squirrels always got away (thank goodness she never brought dead animals to our door), but she loved the woods. She would race back and forth between Al and me as we hiked, making sure we were both there, then wander a ways to sniff and explore. Her fur, such a beautiful russet, always blended with the fall foliage.

For the past five years, after I was laid off and began my consultancy at home, she was my constant companion. By this time in her life, she had mellowed considerably and was content to sleep, curled up under my desk or next to me in my office as I worked. But come 2:30 in the afternoon, somehow her internal clock would always go off and she would rise to nudge me for a walk, often nosing my hands off the keyboard to get me going. A good thing, for both of us. Those walks always cleared my head and gave us quality time together. I even finally taught her how to heel and not chase other dogs that passed us. Who says you can’t teach an old dog new tricks?

Most of all, she was a loving, comforting presence. We had our own way of communicating. She would let me know what she needed by pacing to and from the desired object—her water bowl, the back door, the kitchen to remind me it was time for pills (in ricotta cheese, of course), the back door again. Whenever I came home, she would always be there to greet me. And whenever I offered a walk, she was ready to go. On Shabbat afternoons, she would curl up nearby while I napped on the couch, and, sometimes, she could still climb up to cuddle next to me.

A hardy girl, she was beloved by her vet, who called Ginger her favorite Golden and always remarked on how she still had such “pep in her step.” But by last year, she was finally beginning to show her age. Arthritis, thyroid issues, weakened sight, loss of hearing in her right ear, lessened smell, confusion—all took their toll. Two weeks ago, she began to have trouble keeping down any food, and after a blood panel, we learned that her liver was failing. I thought she was rallying with medication and new bland food that she loved, but that was wishful thinking.

On Friday, I was writing at the kitchen table before going to the vet for some more anti-nausea meds. I got up to put on my coat and began telling her I’d be back soon, thinking I had let her back inside from her morning rituals, only to realize she wasn’t there. I called for her and looked all over the house, upstairs, the basement, out back, out front, in a total panic. It was as if she had vanished. Finally I clambered through the deep snow in the back yard, following the path she’d carved for herself in the drifts, and found her, collapsed. She was hemorrhaging. Blood stained the snow by her muzzle.

I stumbled back through the snow to get her a blanket, then called Al in hysterics. Thank goodness he could come home from work, because there was no way I could lift her and my fingers were going painfully numb in the frigid weather. He carried her to the car and we took her to the vet, but we knew it was over. She died, peacefully, in loving hands.

Of all the things I learned from Ginger, here’s what I will remember most: Live each moment fully. Be sure to take a nice, long stretch when you wake up. Ask for what you need. Find the good in everyone. And remember that whatever is troubling you, love is the strongest force in the Universe.

Rest in peace, Ginger. You are forever in our hearts.

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.

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.

The Right Tools

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My dad had a saying: “Any problem can be solved if you have the right tools.” He was something of a tool geek. In the basement of our home, hanging on a pegboard over his workbench, he had every kind of tool imaginable: crescent wrenches, socket wrenches and pipe wrenches, neatly arranged from small to large; flathead and Phillips head screw drivers; a carpenter’s hammer, tack hammer, ball peen hammer, rubber mallet; an electric hand drill with a full set of wood and dry-wall bits; rulers for every task.

Then there were his electronics bench, with its oscilloscope, soldering iron and various pliers; the table saw, with a variety of sharp-toothed steel discs hanging nearby; the drill press; the radial saw. Wooden shelving he’d built was filled with nuts, bolts, screws and nails in baby food jars, each labeled and ordered by size and type. And that’s just the short list.

I found it fascinating. I was his little helper, handing him the right transistor to build his latest Heathkit or the proper socket wrench to adjust his tractor snow-blower.

I learned a lot about how to make things (and how to get out of his way when he inevitably made a mistake and started cussing) and a deep respect for the value and care of good tools. Although my hands don’t work well enough to be able to build my own bookcases or tables or chests of drawers, I understand what’s required and how to envision the project and its implementation.

I also learned an approach to problem solving that has carried me a long way in dealing with scleroderma. Just because my hands don’t work properly doesn’t mean I can’t do what I need to do. I just need to figure out a different approach. And, sometimes, get the right tools.

Dad died five years ago, this past week, on the fifth night of Hanukkah. And so it was exceptionally fitting that in the mail on Saturday, a large box arrived from my Virginia brother-in-law, with a Hanukkah gift—a tool I’d been needing for years.

Saul had visited us in October. While he was here, he noticed I was having trouble opening cans. It’s ridiculous, really. I know I’ve needed an electric can-opener for years, but just never got around to buying one.

Sure enough, when we opened the box, inside was a sleek, black-and-chrome electric can-opener with an easy-lift handle. I tried it out Sunday night. Voila! No more sore fingers from struggling with a manual can-opener, ergonomic design notwithstanding. The can of plum tomatoes turned quickly and quietly, the lid came off easily, and there was no messy blade to clean.

It’s amazing how this device has instantly made my life easier. Especially when I have intransigent ulcers, as I do right now, opening cans has become quite an ordeal. If my fingers slip, it’s extraordinarily painful. Sometimes I’ll turn the manual crank all the way around the can, only to have to repeat because the blade didn’t cut all the way through the metal lid. There have been many times I’ve had to use rubber gloves or a towel for extra padding on the handle, to be able to manipulate the can-opener. Sometimes I just can’t open the can at all, and I have to wait for Al to be available to help.

Why it took my brother-in-law’s thoughtful gesture to turn this around, I’m not sure. Sometimes you just get so immersed in the way you’ve always done something that it’s hard to muster the energy or awareness to fix it.

So, I repeat, in Dad’s memory: Any problem can be solved if you have the right tools. And I’ll add this caveat: It helps if you’re paying attention. Thank you, Saul.

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