Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

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Soloing

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One of the scary things about having a chronic disease is wondering what will happen if the people you love and depend on are no longer there. Many cope, living on their own. I have great respect and empathy for those who do, because it’s hard and exhausting to deal with all the aspects of managing your health by yourself.

For the past 10 days, I’ve had a taste of that experience, as Al has been away in Israel visiting Mindi, our eldest. Last year we made the trip together to see her; this time around, we had to economize, and since it’s very strenuous for me to travel that far alone, Al made the trip by himself. As I write, he’s in the air, on his way home from a great father-daughter adventure. I’m glad they had a wonderful visit, and I’ll be glad when he gets back.

I’ll admit, I was anxious about his leaving. In the 28 years we’ve been married, he’s traveled abroad a few times, but I have always had one or both of our daughters here with me. So this has been the longest stretch of time that I’ve had to manage by myself since I was diagnosed nearly three decades ago with an autoimmune disease that turned out to be scleroderma.

Friends have been a great help. We had a messy snowstorm the first weekend Al was away, and our good neighbors dug me out. I had several back-up contacts in case more bad weather swept through, but we lucked out with just rain and snow flurries that quickly melted.

I joined other friends for Shabbat supper on the two Friday nights during his absence, which helped break up the week and made for good company. I went to our synagogue’s Purim party. I took my regular evening Pilates and dance classes, and joined friends for weaving. I had plenty of work to keep me busy. I drove to New York to see our younger daughter, Emily, at her college this past Sunday.

So all of this has made for a very full stretch. But I also managed to injure my left wrist. Every time Al has been abroad, it seems I mess up one of my joints. I don’t exactly know how I did this—probably from lifting things I don’t normally lift, opening boxes or jars I usually hand off to him, trying to shovel the slush off the back walk instead of asking someone for help, or some combination thereof.

I saw my rheumatologist at Boston Medical Center for a regularly scheduled appointment last Thursday, and he thought I had developed some tendonitis. I’ve had my wrist in a brace for nearly a week, and today is the first day it feels close to normal.

Yes, thank goodness, my body does heal, even when I’m frustrated and impatient. But I’m also tired. All the tasks that you share in a marriage add up quickly when you’re going solo. Anyone who finds herself suddenly without a partner, by choice or circumstance, knows this all too well. When you have chronic illness as an extra partner, the fatigue factor intensifies.

This is what I’ve learned over the past 10 days:

Sometimes it’s nice to have the house to yourself and do everything exactly as you want, without having to negotiate. I’d be lying if I didn’t admit that I’ve enjoyed having my own space for a little while.

I can definitely manage on my own if I have to. This is reassuring, to the extent that I’ve had nagging doubts as my health has gotten more complex.

Next time, I’ll need to rethink how much help to ask for, what I can leave go and what is absolutely necessary. It’s not worth hurting myself or getting overtired to “get stuff done.”

I miss my husband. I’m glad he’ll be home soon.

Photo Credit: Funchye 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.

Going the Distance

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I often think how grateful I am to live within an hour’s drive of Boston, home to some of the world’s best medical experts. It’s a major advantage to have access not only to rheumatologists who specialize in the complexities of scleroderma, but also to cardiologists, pulmonologists, hand surgeons and myriad other specialists who have seen enough patients with scleroderma to understand all the problematic permutations of the disease.

One of my specialists that I value most is my podiatrist. The man has literally saved my feet. Scleroderma causes thinning of the fat pads in your soles, and walking can become quite painful without proper orthotics. Before I began seeing him about five years ago, I was beginning to limp, not only because my natural cushioning was wearing away, but also because the skin on the bottom of my feet was stiffening and cracking and developing corns that I could not remove.

The first thing he explained was that I needed cushiony, full-sole orthotics, as opposed to the hard, three-quarter kind that had been prescribed by a less knowledgeable podiatrist about a year earlier. He then put me on a schedule of monthly visits and regular use of prescription-strength ammonium lactate cream to soften my skin. He also recommended shoe brands that could accommodate the orthotics. I’ve since discovered Merrell and Clarks, my two go-to brands that make comfortable, attractive, lightweight shoes with removable insoles.

Thanks to my podiatrist’s attentive care, my feet healed, and for the most part, I’m able to get around with a nimble stride. I see him every six weeks to trim my toenails (this has also become pretty difficult, as my handgrip has weakened and my eyesight is not what it used to be), shave calluses and corns, and stay on top of the calcinosis that has developed in a couple of toes.

So, when he decided several months ago to move from Boston Medical Center to South Shore Hospital, I decided to follow him. The drive, I reasoned, would be about the same length of time—longer in terms of miles, but comparable when you factor in the traffic volume typically encountered when driving into Boston versus approaching the Cape.

However, my last visit, this past week, took an hour-and-a-half to get to his office, an hour in the waiting room (growing pains for the new practice), and would have taken another hour-and-a-half to get home if I hadn’t paired the appointment with other personal business in Boston that afternoon. All told, a four-hour commitment to take care of my feet.

That’s a lot of time. In essence, every six weeks I need to spend a half-day to be sure I can keep walking. Well worth it. But still, a lot of time.

And that’s just one of a handful of regular appointments I need to keep in order to stay as healthy as possible. Most are in Boston. Most take a half-day because of travel and waiting time.

When I get annoyed by the many hours required to keep on top of all this, I remind myself that there are others who have to travel much farther to benefit from this level of quality care. I try to look at it as time that I devote to myself. I listen to classical music on the radio as I drive and use the mental space to problem-solve projects I’m working on, much as I used to do when I commuted regularly to Boston for my former job. I often bring reading material for the waiting room that builds my writing or marketing skills, so I can make the most of any delays.

Still, it’s a lot of time. And there are weeks when appointments stack up and I feel like I can’t get anything done. Working for myself these past three years makes it easier, since I don’t have to explain time out of the office to my boss anymore. But there are many other things I’d rather be doing than driving over a hundred miles roundtrip to see my docs every few weeks.

That’s when I daydream about a Star-Trek-like medical center, where your doctors just wave a medical tricorder over your body to diagnose your illness and cure you of same.

Beam me up, Scotty.

Photo Credit: shaggy359 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.

Why I Don’t Do Much Housework

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I like a clean house. And the older I get, the more I hate clutter. Do we really need all this stuff that just takes up room and collects dust?

The clutter issue has become more salient as I’ve struggled to keep our home as clean as I’d like. I used to manage most of the housework myself, years ago, when the girls were still young. Every Friday, while they were in school, I’d clean the house from top to bottom in preparation for Shabbat. I’d dust every tchotchke, vacuum under the beds, mop the bathroom and kitchen floors, the whole works. I was exhausted by the end of the day, when we’d finally sit down for our Friday night meal. But I also felt a sense of accomplishment and renewed calm, with our home restored to order.

This was before I got a full-time job and began commuting to Boston. It was also before my hands simply became too damaged to manage the work. At that point, we hired a cleaning service.

Over the years, we’ve taken a break to save money, only to rediscover that the only way to maintain my cleaning standards is to have someone come every other week to do all the heavy housework. I picked our current service because they use environmentally friendly products and are very reliable.

Still, it bothers me. There is something about not being able to do this myself that feels like failure. I’m sure this sounds silly. Women have striven for years to be free of the drudgery of housework. It shouldn’t be “women’s work” in the first place. (In all fairness, Al does help a lot around the house, with laundry, dishes and yard work, as well as grocery shopping.)

But the reality is, no one will ever clean my house the way I once could. Whenever I get aggravated and try to tackle the stuff that’s still not the way I want it, I end up hurting myself. Even if I wear gloves to protect my hands, I inevitably smash an ulcer or otherwise damage my skin.

Last Friday, when all the workmen who had been tromping through our house for the past two weeks finally finished connecting our new energy-efficient heat pumps and installing triple-pane windows, I looked at all the tracks across the kitchen floor and couldn’t stand to wait for our cleaners to arrive this week.

So I went out and bought a floor mop that sprays cleaning fluid so you don’t need to wrestle with a heavy bucket and wringing out a sponge mop.

This presented several unanticipated problems, however. First there was all the shrink wrap and plastic packaging to remove, one of my pet peeves that requires deft maneuvers to avoid mashing my hands. Then I had to pry open the battery holder with a knife because I couldn’t slide the compartment door open.

Then we came up one battery short. While Al ran to the store right after he got home from work to pick up more AAs (and stay out of my way because I was on a tear), I vacuumed up all the flotsam and jetsam from the window installation. When he returned, I began mopping, erasing every trace of work boots on the kitchen and dining room hardwood floors. This felt great. I’d actually managed to clean the kitchen floor on my own.

But. As soon as I’d finished, I realized my left ankle was sore, and my back, and my joints were acting up. One more reality check. I just can’t do what I used to be able to do.

This is what’s so frustrating. I’m sure it doesn’t really matter if our home doesn’t sparkle.  I know the extra degree of clean is all in my head. I’m grateful that we can afford some help and, in the process, support another woman entrepreneur. I just hate feeling like I have to rely on others to do something so basic as mop my kitchen floor. It’s one more reality of this disease.

So the only alternative is to make it easier for our cleaners to clean. And that means reducing the clutter. I have a long list. But it’s a worthwhile effort, and one I can still manage, without help—to decide what’s really essential.

Photo Credit: twicepix 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.

Blizzard Warning

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The sun is shining, the snowplows are revving and Al is raking two feet of snow off our kitchen roof as I write. Twenty-four hours after Nemo blasted through New England, our street is a canyon of bright white snowpack amidst four-foot walls of plowed drift. Evergreens bow, weighted by mounds of melting snow, while barren hardwoods stand tall and unbroken, spared accumulation of Nemo’s fine, cold powder.

We went to bed Friday night listening to the wind howling overhead. The snow was blowing sideways near midnight. I watched it from our bedroom window, swirling and streaming in the streetlamp’s golden glow—reassurance that the power was still on.

Around five I awoke, unable to go back to sleep. Overnight, true to predictions, the snow had piled more than two feet high. Al’s car, parked in the drive, was half-buried. Only the  yellow cap of the fire hydrant at the front of our lawn was visible. The wind drove snow at a 45 degree angle. Flakes swirled and danced like millions of down feathers in a colossal pillow fight. And still, the power was on.

Once again, we got lucky. Through Tropical Storm Irene, through the 2011 Halloween Surprise, through Super Storm Sandy, through severe ice storms of recent years, and now through Nemo, we’ve had light, heat and hot water. I’m almost afraid to state it and tempt fate.

This has become my constant fear, whenever I hear news of a major storm’s approach: What if we lose power? With extreme weather the new normal, it is now inevitable that strong winds plus precipitation on a large scale will cause massive power outages that can incapacitate for days and even weeks.

At its peak, Nemo knocked out power for 650,000 families and businesses in Long Island and up the New England coastline; that number was halved by Sunday. Still, losing power in a record-breaking winter storm means waiting in the cold for your turn on the utility company’s long punch list. This is what scares me.

Because of my Raynaud’s and poor circulation in my hands and feet, I simply can’t stay in a cold house for long. Well before the pipes might freeze, I will go numb. We have yet to invest in an emergency generator, but if the extreme weather patterns persist, this may become a necessity in a few years.

I hate thinking this way. I used to love snow as a kid. A storm like Nemo would’ve had me itching to run outside and build a snowman, or flop on my Flexible Flyer to slide down the hill in our back yard. I would’ve played outdoors until the snow turned blue at dusk and I lost all feeling in my fingers and my teeth chattered. The next day I would’ve raced out to snap icicles from the eaves and slurp them like popsicles.

As Nemo kicked into gear on Friday afternoon and I walked Ginger in the mere two inches that had accumulated so far, I watched children a few houses up the street slipping and sliding in the snow. It looked like fun.

I chose to live in New England because I love the full four seasons, including winter’s magical frosting of the landscape. I don’t want only to think of weather in terms of the risks involved. Storms are part of Nature’s cycle.

And yet. Now every significant storm has an ominous edge. There were plenty of online jokes about naming this one Nemo, moniker of the little orange-and-white clown fish of Disney’s animated pantheon. But Nemo was also the name of the vengeful, tormented submarine captain in Jules Verne’s 19th century science fiction novels, Twenty Thousand Leagues Under the Sea and The Mysterious Island.

In Verne’s world, Nemo raged against oppression and British imperialism, sinking war ships and rescuing castaways, living by his own law under the seas. The storms that now confront us are Nature’s payback for humans’ destroying carbon reserves and wasting the planet. What we’re experiencing is just a taste of even more severe weather to come, if we fail to act.

I want to believe that we humans are creative, adaptable and capable not only of coping with the severe consequences of global climate change that we’ve brought upon ourselves—but also able and eventually willing, collectively, to reverse the trend, at least for our grandchildren and future generations.

Home generators may be the immediate response to ensuring personal safety during extreme weather. But if we’re really serious about reversing global climate change, we need to take responsibility for much more than our own homesteads. And we need to start now.

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.

Toasty

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Living in New England with scleroderma presents its challenges. Especially in the depth of winter, when temperatures have been hovering between teens and twenties of late.

Keeping our house warm gets expensive. We have a combination of steam radiators fueled by an oil burner and electric baseboard heat. Unlike many of our friends, who manage heat bills by setting their thermostats at a frugal 64 degrees and wearing lots of sweaters, I can’t function at that temperature.

This has become even more of an issue since I began my home-based marketing consulting practice three years ago, after the college where I’d worked for 12 ½ years sank into serious financial difficulties and went through a series of layoffs, including my award-winning marketing department.

Since I’m now at home during the day, we can’t set the thermostat down, and our heating bills have been astronomical. So this summer, we decided to take advantage of a state energy loan program, insulate our attic and install highly efficient heat pumps. It’s taken months for all the loan paperwork to go through, and the heat pump contractors finally arrived last week.

But not before our 30-year-old boiler broke. Two Friday mornings ago, I was washing my face when the hot water pipes started clanging. The toilet groaned when flushed, and dirty water filled the bowl. Thinking maybe the city was doing some kind of repair work, I checked the DPW’s Facebook page (a sign of the times, the best way to find out details during storms, power outages and maintenance). But, no, the only post was a picture of city workers clearing storm drains of snow and ice.

With the kind of magical thinking that takes over when you suspect the worst and don’t want to believe it, I continued my morning routine. But as I washed my breakfast dishes, the pipes groaned again, shuddered and then, nothing. The hot water stopped running altogether.

Down to the basement I went to investigate. And here is why I’m glad, despite the roller-coaster ride of life as a freelancer, that I work at home. The boiler was spewing steam, and a copper tube that linked to the hot water tank had cracked and was gushing water all over the concrete floor.

I flipped off the boiler’s power switch, ran upstairs and called Al at work. What he could do from the hospital was unclear, but this was my reflex. As it turned out, his beeper was being covered by a fellow social worker, and I couldn’t get through.

So I ran back downstairs and tried to figure out how to shut off the water. The obvious lever wouldn’t budge. Neither would the shut-off knob farther up the pipe. My hands simply weren’t strong enough to turn either.

So I ran back upstairs, found the plumber’s number and made a panicky call. With help on the way, I grabbed a big pan, ran back downstairs, found two small tubs, and tried to catch some of the water. But, of course, I couldn’t lift the tubs once they were full—too heavy. Again, my hands just wouldn’t let me do what I wanted.

I was starting to freak out, feeling totally helpless to stop a major flood in the basement, when Ginger barked upstairs. The plumber had arrived.

As it turned out, he couldn’t flip the shut-off lever, either. It was frozen open. So it wasn’t my hands. But he could turn the knob, as well as the main water shut-off to the house (Note to Self: From now on, know how to do this!). With his help, we were able to sweep most of the water into the floor drain, and I soaked up the rest with newspaper. He repaired the broken tubing.

But. The boiler was still too hot to refill. I called the oil company, and over the course of the afternoon, we discovered that (a) the low water cut-off valve was so corroded, it had failed to shut off the boiler as the water drained out and (b) the cast iron tank had cracked as a result. Even with the new heating system about to be installed, we had to replace it to run our hot water and provide back-up to the heat pumps if the outdoor temperature drops below 10 degrees.

One week after having a house full of contractors working on the boiler, adjusting our radiators and hot water system, and installing the heat pumps, we are now almost ready to deal with New England winters. There’s a bit more work on the new system to complete. We’re still waiting to hear from our insurance company, but hopeful that most of the boiler expense is covered. We’ll be paying for the heat pumps for the next seven years (no interest), but even still, expect to spend less on the monthly loan payments than we have been spending to keep the house warm.

Soon, with the click of a remote control, I’ll have instant, steady heat in whatever room I’m in, using no more energy than it takes to power a 75 watt light bulb. Plus an energy-efficient boiler for ample hot water. Despite the boiler debacle, well worth the investment.

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.