Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

body-mind balance

Enter Juno

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Just when I thought the Farmer’s Almanac was going to be right, after all, predicting less than normal snowfall this year, along comes Winter Storm Juno. As I write on Monday night, we are about to get clobbered by what all the hyped-up TV meteorologists are predicting may be a historic blizzard for the Northeast—rivaling the Blizzard of ‘78.

noreaster-goes-12615The wind-up to this storm has been more nerve-wracking than the actual snow, at least so far. Driving around today, I listened to the new Governor of Massachusetts give his first Big Storm news conference, and all the state officials who reassured us, over and over, that everyone knows what they’re doing and are well-prepared to handle Juno.

N-Star is bringing in electrical crews from as far away as Tennessee to deal with power outages. I received an email from our tree service that customers will get first preference dealing with any downed trees. We managed to get an oil delivery this afternoon before the storm hit, which I insisted on trying to schedule this morning, because it will be incredibly hard to reach the oil spigot under a few feet of snow in frigid temperatures the rest of this week. Around 10:30 this evening, we received a phone message from our city about the state of emergency and travel ban beginning at midnight.

All of this is certainly good. I appreciate having foreknowledge about when the storm will start (it’s been snowing since late afternoon), how long it will last (through Wednesday morning) and how much snow we can expect (anywhere from 18 to 30 inches, according to various reports). At least we can plan a little. Good friends up the street with a generator have offered us a place to stay if the power goes out, a great comfort.

But the reality is, there is no way to know exactly what the storm will bring and how to deal with it until we’re in the heart of it. Which got me to thinking of the parallels between really bad weather and really bad diseases. Too much information about what might happen can only make you incredibly anxious. There’s no way to know how you’ll respond until you’re in the thick of things. And there’s a limit to how much you really want to know about all the scary alternatives, because it doesn’t help you to deal with what actually happens, anyway.

So, I’m trying to keep this in mind as I ride out Juno. I felt a lot better this evening once I knew that both of my very capable adult daughters were safe and sound in their respective homes, at either end of the state, and I heard Al walk in the door. Then I found out he has to go to work Tuesday, as the only social worker covering his hospital, since his colleagues live farther away. But he doesn’t have to rush in the morning, and he may just get there by snowshoe, a much better alternative to driving if the roads get really bad.

Ginger has the best attitude of all of us. She may be 16-and-a-half, but she still loves snow. She must have gone outside at least a half-dozen times this evening, each time returning with more snow on her coat. As far as she’s concerned, it’s just another cold, refreshing night outside. 

According to Roman mythology, Juno was the chief goddess, female counterpart of Jupiter and mother of Mars. She was a goddess of childbirth and worshipped as the guardian angel of women.

If this storm is anything like its namesake, maybe all the warning and hype will be a blessing in disguise, keeping us well-prepared and safe from worse fates. As long as the power stays on, we have heat and Al makes it back and forth to work safely, I will try to sit back, get some writing done and appreciate the wilder side of Mother Nature.

And if things don’t work out so well, I’ll deal with that, too. As I keep reminding myself, I’ve had plenty of practice.

Image Credit: Satellite view of developing Nor’easter off North Carolina’s Outer Banks, January 26, 2015, NASA/NOAA GOES Project.

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.

Fitness and Starts

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It’s official. I’m fit. Well, sort of.

In keeping with my New Year’s resolutions, I decided to shake up my exercise routine, which had dwindled to a Pilates reformer class once a week plus morning stretches, and joined a local health and fitness center last week. As part of my new membership, I took a mini-fitness test, to determine my baseline.

After about a half-hour of various activities, including taking my blood pressure, recording my weight, measuring body fat, testing my strength and flexibility, and walking the treadmill, plus running all the results through a complicated formula, it was determined that I’m in pretty good shape, overall.

Not bad for a 60-year-old woman who’s had scleroderma half her life.

Now for the qualifications. Resting heart rate, aerobic fitness and blood pressure are all in the fit-to-excellent range. This came as a huge relief, because I do face some real challenges if I have to accelerate rapidly from 0 to 60, related to exercise-induced pulmonary hypertension. I’ve had some pretty frightening episodes of running to catch trains over the past couple of years that left me struggling for breath. One of my top priorities is to improve my aerobic fitness as well as determine my limits, so I can make better decisions about when I can push myself and when I can’t.

What I need to work on most, not surprisingly, are building up my strength and improving flexibility. (No, that’s definitely not me in the photo. Just wishful thinking.) And the old body-fat-to-muscle ratio could use some work, too, even though I’m on the thin side. Nothing like menopause to make all your body fat sink into your hips and thighs.

So, now the question is, what exercises to do to get stronger and regain whatever flexibility is possible? With the help of fitness center staff, I went through all the equipment and figured out what my routine should be. The center director, after reading up on scleroderma, reviewed classes with me and made recommendations. The next day, I tried out a group class that was a mix of yoga and Pilates, set to music. Over the weekend, I recovered.

The big advantage of this arrangement is that I can go to the gym whenever I want to work out, and most of the classes I’m interested in are in the late morning—well-suited to my work-at-home arrangement and very appealing in the winter, when going out at night seems overwhelming because of the cold.

The flip-side disadvantage is that I no longer have a set class schedule—so I have to be sure to plan ahead and make an appointment with myself to go exercise.

Despite muscle fatigue and some tender joints by week’s end, I did notice three major plusses:

  • The treadmill workout woke up my brain. I really felt much more clear-headed afterwards.
  • I slept better after I exercised. I’ve always noticed this, but it was quite striking after both days of visiting the gym.
  • I had more spring in my step. This was also surprising.

All encouraging signs, enough to keep motivated as I figure out what I really enjoy the most. As one of my rheumatologists once told me years ago, exercise is essential to my health and well being, but I need to find something I really love, in order to stick with it.

For someone who used to hate gym class in high school, I guess I’m making progress. It’s about time.

Photo Credit: QuinnDombrowski 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.

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 Big Bang

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Last Tuesday night, I was backing out of our driveway, minding my own business and listening to music, when, WHAM, I hit something. Now I’m a careful driver, and I had checked both directions before moving. It was really dark out. I was not happy.

I pulled over to the side of the road to see what happened. Not only had I hit something—I had hit Al’s Honda Civic. He’d parked on the street, because our eldest was home visiting and her car was in his normal spot to the side of the driveway, but I didn’t see his car when I backed out.

Not only had I hit Al’s car, but I’d dented the passenger door on the driver’s side. Thirty seconds at five miles an hour. Hundreds of dollars of damage. I hurried back into the house to tell him.

To Al’s great credit, he didn’t get upset or angry. He gave me a hug. We went outside to look at the door. It still opened and closed properly. He told me not to worry and to go on to my weaving class. For the next hour-and-a-half, as I wove, all I could think of was that I was determined to make the repairs, regardless of the cost.

Then I got home and took a closer look at my Prius. Not only had I dented Al’s car door, but I had cracked my rear bumper. It’s fiberglass, one piece. More dollars flying out the window. How is it possible to be driving so slowly and do so much damage to two cars?

The day after New Year’s, Al took the cars to a trusted autobody shop and got the estimates. Well, it wasn’t as bad as I expected, but it was bad enough—$750 to repair both. Oh, boy. We decided to go ahead, because I wanted to fix what I’d messed up.

So, for the next couple of weeks, we’ll have one or the other car in the shop. We’ll find the money somehow, the cars will look as if nothing had ever happened, and I will most certainly try not to make that expensive mistake again.

With a few more days’ hindsight, here are my bigger takeaways:

The older I get, the more closely I have to pay attention when driving at night.

I’m very lucky to have such a good husband who doesn’t get mad when I bang up his car.

We’re fortunate to be able to repair both cars, even if it will take a few more months to pay off the credit card.

They’re just cars. They aren’t people. No one was hurt.

Now, if only I could find a body shop that would make me good as new for $750—that would be something.

Photo Credit: Flickr Creative Commons

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.

Resolved

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How did it get to be almost 2015, already? Time to retrain myself to write the correct year on checks, once again (yes, I’m one of those people who still writes paper checks). And the correct year when I actually write notes or letters by hand (gasp!). And when I track versions of electronic documents. Or date invoices. Or write the date at the top of a page in my journal.

It’s also time for some New Year’s resolutions. Of course, you can make resolutions to do something better/different any day of the year. But there’s something about revising your habit of how you write the date, an act that filters into so many small daily tasks, that prompts a sense of newness, fresh starts, opportunity for change.

So, here’s my list of healthful resolutions for 2015, half-way through the teens decade of the new millennium:

  1. Enhance my weekly exercise routine. I do stretches every morning and Pilates once a week. But I stopped taking dance classes last summer—mainly because I was getting bored and the class involved a long drive. Time to check out a class closer to home or find something better. But I have to move, more, to keep my joints in shape and stay strong.
  2. Say thank-you to someone for something specific, each day. It’s all too easy to get stuck in all the things that go wrong. Expressing gratitude not only helps me appreciate all the good in my life—it also makes someone else’s day better.
  3. Declutter our home. This is a work in progress, to repair, repurpose or recycle what we don’t need and replace what’s broken and beyond fixing. We really don’t need so much stuff. And I feel better when our space is simplified.
  4. Favor locally grown, organic produce. It’s healthier, and it helps the planet.
  5. Write the first draft of my novel. Yes, I’m getting serious about my fiction. Started a novel in the fall, and my goal is to have a solid draft by this time next year. Investing time in my own art is central to my being—and well-being.
  6. Go/do/see someplace/something new each month. I want to keep growing.
  7. Limit multitasking. I’m really good at this, but it drains my brain. This is Part One of slowing down and focusing on what’s really important.
  8. Limit my to-do list to what I can actually accomplish in a reasonable period of time. This is Part Two.
  9. Spend undistracted quality time with family and friends. Silence the iPhone and put it out of sight. (Yes, Al, you can quote me to myself.)
  10. Give back to my community. I have to be careful with volunteer commitments, not to overextend myself and drain my energy. But I’ve found a pretty good balance between family, work and volunteering at present, and I want to continue as long as I’m able.

As 2014 draws to a close, my thanks to all of you who read this blog, to those who have shared your thoughts and feelings, and to all who care to understand what it means to live with a complex disease like scleroderma. My best wishes for a healthy, fulfilling, joyful and prosperous New Year!

Photo Credit: JoePhilipson 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.