Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

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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

30th

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December 9, 1984. It is sunny, unseasonably warm for Massachusetts. A good omen. I’m getting married today. It’s my second time around, his first. We’ve both been on our own for several years, and now, after knowing each other for just about nine months, we’re taking the big chance that our instinct is right and we’re meant to spend the rest of our lives together.

Our rabbi—who was Al’s Hebrew School teacher growing up, and my mentor when I landed in this community after my divorce—is performing the wedding. He’s responsible for our meeting. (He gave Al my name and number, then later apologized for not asking my permission first. We’ve laughed about this many times, since.)

After an eventful ceremony (one of our friends, who is helping to hold up our wedding canopy, faints, and my dad steps in to take his place, but we’re so absorbed in each other we don’t notice), after a great party with kosher Chinese food and Klezmer music, we drive to Cape Cod for our honeymoon. We discover the magic of Nauset Beach, in December, at night. The sand is phosphorescent and sparkles in the moonlight.

Thirty years later. A Nor’easter is whipping up the coast, but fortunately it’s bringing only rain and wind, not mountains of snow. We’re going out to dinner tonight to celebrate our anniversary. On Friday, our daughters are coming home from their respective graduate programs for Shabbat dinner, the first time in months we’ve all been together, just the four of us, for a meal. Their idea.

I feel so fortunate to be writing these words. Simple things, dinner out with your husband of three decades, Friday night dinner at home with your grown daughters. We’re thinking about what else we might do, later this year, to celebrate coming this far together. But right now, this feels just right.

Our first year together was fraught with medical crises. Only a month after our wedding, I learned I had some kind of auto-immune disease—maybe rheumatoid arthritis, maybe lupus, maybe scleroderma. Just as I had put my life back together again, it all seemed to be unraveling. Later that first year, Al’s mom had the first of two strokes. Al wore himself out, running back and forth to the hospital to visit her, working and leading a youth group. He came down with mononucleosis, his spleen ruptured, and he needed emergency surgery. When they opened him up, the surgeon found six pints of blood in his abdomen. He was held together by a blood clot.

Al came home from the hospital the day before our first anniversary. In the decades that have followed, we’ve each had our share of medical scares, and we’ve seen Al’s mother and both of my parents through the illnesses that eventually took their lives. We’ve been in and out of hospitals and ER’s with our daughters, too.

But we’ve been lucky. So very lucky. With all the medical challenges, with all the stresses of raising a family and keeping our daughters safe in a troubled world and providing them with a good education and making ends meet and finding work and surviving layoffs and starting my own business—with all of that, and much more, we’re still here. Together.

Over the weekend, Al and I decided to sort through all the books, the many, many books in our home, to give away the ones we no longer want and make room for the ones we want to keep. I can’t take books off the shelves easily. It hurts my hands. So Al did all the moving and shuffling and reorganizing, while we talked through what should go where. Do you want these alphabetized? he asked. Yes, but within categories, I said, like poems, plays, essays. Ok, he said, how about this way? We worked like that for several hours, Saturday night and Sunday, too. We can now find all of our books. But the best part—it was fun.

Maybe it’s taken all that’s come before to be able to sit back and appreciate the simple beauty of being able to organize a few thousand books with your husband on a cold wintery weekend, when your hands don’t work, and his do. It’s the kind of deep, abiding, dependable love you can only discover through traveling a rough road together.

Marriage is hard work, especially with a chronic disease as an unwanted third partner. I wish we could have gotten to this place without my scleroderma. But maybe there was no other way. And I’m very grateful that we’ve made it this far.

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.

Time to Stop Typing

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I’ve been having trouble sleeping the past few nights. My finger ulcer keeps waking me up. Usually when this happens, I have an infection. But that’s not the case this time. The skin is just too raw on the tip of my right ring finger, but I need to type and do other tasks, and the ulcer keeps getting irritated.

Now, I should be grateful that, at least so far, I don’t need to start antibiotics. I hate taking them. But the good thing about infections, much as they hurt: antibiotics provide significant relief within about 48 hours.

My problem at present is that there’s no quick fix for this particular variant of ulcer pain. It’s like having a headache in my finger. The only cure is time.

Our fingers have an extremely dense concentration of nerve endings. According to a recent article in The Guardian, our fingers have so many nerve endings that our brains actually outsource some neural computations about object orientation and movement to our fingertips.

All of those nerve endings make it possible to distinguish a baby’s cheek from a scruffy beard, stovetop heat from freezer chill, a satin sheet from flannel. When you think about it, the range of our fingers’ neural intelligence is really quite astounding.

That neural density also accounts for why it hurts so damn much when we get a paper cut, or smash our thumbs with a hammer. . .or develop digital ulcers.

The only encouragement I feel right now is that I’ve had two other recalcitrant ulcers in the past few weeks that gave me the same trouble, which are now, thankfully, past the achey stage. I’ve noticed over the years that there is some kind of tipping point in the healing process, when my damaged skin cells seem to wake up and repair themselves in large enough numbers that the pain level recedes. This can happen overnight.

So I’m going to cut this short, give my sore finger a break, take some Ibuprofin and Tylenol (they work differently), redo my bandages, and—I hope—get some sleep. Maybe tonight’s the night my body will work its magic, once again.

Photo Credit: JonathanCohen 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.