Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

managing chronic disease

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.

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.

Don’t Tell Me the Odds

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Twenty-eight years ago this month, I first heard the word scleroderma. I was sitting in a rheumatologist’s exam room, a few weeks after returning from my honeymoon with Al, trying to wrap my head around the fact that I had some kind of autoimmune disease that was at the root of all the strange symptoms I’d been experiencing for the past three years.

We talked about my history of extremely cold, blue hands; the swelling fingers, migrating joint pain and photosensitive skin; the fatigue that made me feel as if someone had turned off a switch in my brain; the positive antinuclear antibodies blood test that confirmed my immune system had gone haywire and was assaulting my healthy tissue.

My rheumatologist, who has since become one of my most stalwart partners in combatting this mysterious and complex disease, thought I had one of three possible illnesses: rheumatoid arthritis, lupus or scleroderma. I went home, emotionally numb, and cried with Al for a long time.

This was before the days of the Internet. I took out a book from the library about lupus to try to learn more. Scleroderma sounded so strange, so remote, I didn’t even entertain the possibility. Plus, I couldn’t find any information.

Slowly, as the skin on my hands and face began to tighten, the S-word became more threatening. I picked the brains of our physician friends. They were supportive and grave when I told them the looming diagnosis. Back then, the mortality statistics placed the odds of survival at about seven years from onset. I chose to ignore this.

But I had to find out more. With Al, I attended several meetings of a local scleroderma support group. Here I met people with much more advanced disease—mostly women, some with fingers bent like claws; others with shining, mask-like faces, unable to close tightened lips over teeth; still others with only nubs left of their fingernails.

The conversation focused on treatment options, presentations by local rheumatologists about the many complications of the disease, shared angst. I lasted about four or five meetings and then told Al I didn’t want to go back. Everyone meant well, but the energy was so negative, I couldn’t continue. So much of the conversation focused on each person’s individual problems. I found it terrifying. I didn’t want to identify with these people. Was I really going to end up like them?

In the years since, I have come to appreciate the value of support groups, which offer a unique opportunity to commiserate, share insights and learn from fellow travelers on this strange journey. But for the newly diagnosed, any encounter with information about scleroderma—whether in person or online—can feel like drowning in a tsunami.

There is so much that can go wrong: tight skin, painful joints, ulcers and infections, kidney failure, pulmonary hypertension, numb hands and feet, lost mobility, fatigue, disfigurement. And that’s just the short list.

Today you can read for hours about the many permutations, complications, risks and challenges of scleroderma with the click of a mouse. The Internet is loaded with facts about the disease and latest treatments, commentary from doctors and patients, current research and disturbing images of worst-case scenarios, as well as plenty of bogus treatments and BS. If you don’t know how to filter it, if all you have is a diagnostic label, you can scare yourself even sicker from worry about all the bad stuff that might happen.

But scleroderma is a disease that manifests uniquely in each individual. That’s why, after three decades, I read to stay informed, but for the most part, I don’t immerse myself in scleroderma content, even as I write this blog each week. To some extent, this is because I’ve learned enough from experience and the gift of excellent physicians that I have a solid working knowledge. But it’s also a protective habit I developed years ago—to focus on what I need to know to get appropriate treatment and stay away from the long list of what-if’s.

This goes to a basic fact of living, no matter what your health: If you knew all the bad things that were going to happen to you over the course of your lifetime, you’d never get out of bed. If someone had told me 30 years ago, when I first started having symptoms, all the difficulties that were to come, I don’t know if I would have been able to cope. Time, experience, quality medical care, supportive family and friends, inner resources you didn’t know existed—all combine to enable you to manage challenges you never thought you could handle.

Years ago, my high school boyfriend’s mother said to me, “No one goes through life unscathed.” I was only 17 and had no idea how to respond, but I was deeply shaken. She was right, of course. But she didn’t tell me the other piece of that truth—when the worst hits, you learn what you’re truly capable of.

I wish I had never heard of scleroderma. And yet, I’m much stronger for it. I wish there were other ways to have come to that self-knowledge. But here I am. Some days I get scared about what still might happen, where this all will lead. I make lists and pepper my doctors with questions. Then I try to focus on the present moment, which is all we really have, and do my best to make the most of each day. I remind myself to be grateful to have made it this far. And keep ignoring the odds.

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: Lynn Friedman via Compfight cc