Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Hearing

Fallout

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IMG_0121When I was in grammar school, in the mid ‘60s, we used to have air raid drills. We would file out of our classrooms, line up along the hallway, crouch down facing the walls and place one arm under our foreheads and the other over the backs of our heads.

We had to stay there, silently, for a few minutes, until our principal gave the all clear. Someone would inevitably get a nose bleed, and someone else would be reprimanded for talking, but most of us did as we were told, without questioning. When it was over, we’d troop back to our desks to practice cursive writing on blue lined paper or recite multiplication tables, not giving it much more thought.

For our teachers and parents, of course, these drills were deadly serious—albeit a totally ineffective effort to protect us children if the H-bomb ever dropped on New York City, just an hour to the south, or on the nearby ConEd nuclear power plant at Indian Point on the Hudson.

One neighbor down the street built a fallout shelter and proudly gave us a tour. I thought it looked like a fun adventure to live there, in the well-equipped underground room, with its bunk beds and stocks of canned food. It inspired me, for a class project, to build a model fallout shelter out of sugar cubes and Elmer’s glue, with furniture made out of colorful construction paper. This was how I processed the insanity of those times, not understanding the implications—and, very, very fortunately, never having to come to grips with the reality that the fallout shelter represented.

Our neighbors were the only ones to go to those extremes. I don’t recall their names, but the parents were from France. It was a mere 20 years since World War II had ended.

Wars, fear of wars, now the brutal face of terrorism, haunt each generation. It is a disease we cannot seem to escape, this instinct to destroy, to dehumanize and crush “the other” to gain power, control. Last week’s horrific attacks on innocents in Paris capped a week of bloodshed around the world, including a bombing in Beirut and a slaughter of university students in Nairobi. It seems endless, and the threat that the Islamic State now poses to the world weighs heavily on my mind, as I am sure the threat of Mutually Assured Destruction kept my mother awake at night.

The Parisian attacks feel particularly close, because the targeted restaurants and concert hall are only a ten minute walk from the apartment where Al and I stayed on our trip in July. I have written to our Air B&B hostess, to express our support and best wishes, but have yet to hear back. I hope her silence is only because she missed my email.

I try to reassure myself that, ultimately, over the course of history, the perpetrators of evil  are undone. But it will take cooperation, shared intelligence and resources, strategic force, justice, courage and a commitment to the greater good of all humanity to cure our global society of this terrible terrorist scourge. Xenophobia has no place here—it only accelerates the spread of the disease. Refugees from terror need asylum, not blame for perpetrating the very horrors they are fleeing.

Eradicating terrorism will require decades of patience and determination. There are no quick, facile solutions, as some of our politicians would have us believe during this season of presidential so-called debates. To fall prey to that delusional thinking is akin to believing that crouching in a school corridor is adequate protection against a nuclear attack.

In response to all the cynicism and bellicosity that pervades the news in the wake of the attacks, I draw on our European travels this summer for an antidote. Everywhere we went, strangers helped us. Just as we thought we were lost, someone would point us in the right direction or give us a lift. When we were tired, someone would offer to carry our bags. Most people are basically goodhearted. Dark as the world feels today, the odds for defeating this latest face of evil are in our favor.

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.

Status Report

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Al and I were catching up with friends recently, all of us in our 60s, when the conversation inevitably turned to everyone’s health and the aches and pains that have become all too common with age. I listened, but didn’t say much.

DCF 1.0Then one friend, whom we haven’t seen in quite a few years, turned to me and asked about my health. He remembered when I was first diagnosed, decades ago, and how I had no idea at the time which way it would go.

I explained how scleroderma affects everyone uniquely, and that, although it was complicated, mine was the slow-moving variant. “You seem to be doing really well,” he said. “I’m glad for you.”

He was, of course, being thoughtful. I appreciated his reflection that I look well. But the whole exchange caught me off guard. It surprised me that he remembered those early years, which are now such a distant memory for me—and that this remained how he thought about me.

Even as I deal with my scleroderma every day and write this blog every week, it is not top-of-mind when I describe what’s going on in my life, nor are the details of my symptoms conversation-starters, especially with people I haven’t seen in a long time. It’s there, in the background, ever-present, a force to be reckoned with—but not what defines me. Not by a long shot.

Thirty years ago, when I first became aware that I was dealing with some form of autoimmune disease, it was different. I was terrified and very anxious about what was wrong with my body and the prognosis. I remember cornering friends who were physicians and picking their brains. I’m sure I talked about my health to anyone who would listen. There was so much to process, and the information available at the time was quite limited to the most dire of outcomes.

Within the first year or so, however, I began to pull back. No one outside the medical profession knew anything about the disease, and most of our friends, then in their thirties, were healthy and could not relate to what it meant to have a chronic illness. So I kept to myself. Al was the only person who really knew what I was going through. I sought support and insight from therapists. I commiserated with a couple of friends with their own chronic health challenges, who understood. In fact, over the next few decades, I barely spoke at all about my scleroderma in public.

When I decided to write this blog, nearly four years ago, I realized that I had become so circumspect that it was difficult even to say the word “scleroderma” to anyone other than family, medical professionals and a very few close friends. I felt so self-conscious and awkward about it that when someone inquired about all the bandages on my fingers, I would just mutter something about having chronic ulcers. But I realized that I needed to come to terms with my disease, and the best way for me to do that was to write about it and share the experience with fellow travelers.

After writing thousands of words on the subject, I’m finding that living with scleroderma is no longer a threatening concept or something that I’m embarrassed to mention in a conversation or ashamed to identify as a significant part of my world. Rather, my scleroderma is just there. It’s not the totality of who I am or how I want to be remembered. I wish it would go away, but it won’t. So after three-plus decades, I’ve come to accept it as a part of me and what has made me who I am today. That’s all. Nothing more, and nothing less.

This is my 200th post. To those of you who have followed since the beginning, and to those who are newcomers, I’m sure you’ve noticed that I don’t strictly stick to the specifics of scleroderma—for all the reasons cited here. Living with scleroderma is not just about the details of a complex disease; it’s also about living fully. That’s my personal goal, and that’s what I hope to reflect on here. Thanks for listening.

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.

Image Credit: José A. Warletta

Machu Picchu

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Ever since Al and I went to Europe this past summer, I’ve been dreaming of our next trip. No specifics, yet, just a yearning to see more of the world.

machu-picchu-1369310-640x480Like Machu Picchu in Peru. My podiatrist was telling me about his recent visit while he worked on my corns and calluses and ingrown toenail last week⎯a somewhat helpful distraction, as my feet are incredibly sensitive and this was otherwise not a fun appointment.

He described the ancient Incan ruins in a similar way that I’ve heard from others⎯a very spiritual space, beautiful, fascinating history (albeit tragic, given the fate of the Incas as a result of the Spanish Conquest). And he shared pictures on his iPhone, of extraordinary vistas and smiling llamas. Only a five-and-a-half hour flight from Miami.

Very intriguing. Except for one problem. The altitude is about 8,000 feet. My podiatrist is a big, muscular guy, and had no issues with altitude sickness (for which he was quite grateful). He said he was running around like a little kid, he was so excited to be there. But some people on the trip got very sick and needed oxygen.

How would I manage that altitude (assuming we could even afford the trip, which I haven’t bothered to check) with my scarred lungs? The highest mountain I have visited, as best I can recall, is Mount Washington in New Hampshire, just over 6,000 feet. The body begins to react to altitude right around 8,000 feet. Lack of oxygen can cause fatigue, loss of appetite, trouble sleeping and other issues.

There is also the risk of infection from water supplies that are not treated. I have enough issues with bacteria getting into my ulcers here at home, let alone in a place where you can’t drink the water. How would I keep my hands clean?

Right now, of course, this is all just a pipe dream. I know there are ways to acclimate your body to altitude, gradually, and there are medications that can help. I’m sure there are strategies for hand hygiene, if I were determined enough to figure it out.

But there is also the reality of scaling my travel ambitions to my body’s limitations. There are so many places I’d like to see, on every continent. Even Antarctica. In December, the temperature on the Antarctic Peninsula is about the same as it is here in New England (yes, I’ve checked). Going to Antarctica is the closest you can get to an experience akin to going to the Moon.

Not all of those dreams are possible, health-wise or financially. So, I’ll continue to explore options, right now from the safety of my computer screen. I don’t know where we’ll travel next, and it probably won’t be Machu Picchu. But it will be someplace exciting, inspiring and a push outside my comfort zone. Of that, I am determined. It’s the only way to keep growing.

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.

Image Credit: Julio Sedano Acosta

Moose Tracks

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Last Friday, a moose found its way to a street in our neighborhood, a few blocks from our house. It was clearly lost, an adolescent with only the beginnings of antlers, wandering past Colonials and Capes, trying to find its way back home.

(If you can’t see the embedded video, click here to see it on YouTube. Video by A. Stephenson, 10-2-15.)

I missed all the excitement, but apparently the moose caused quite a stir, galumphing across busy streets, passing near the campus of Worcester Polytech, and eventually disappearing somewhere into the woods. Police and animal protection services followed it all day without capturing it. The moose got away, but not before it made the evening news in Boston.

Friends were talking about it over the weekend, sharing a video of the wayward moose on YouTube. People interviewed on the TV report smiled with excitement at the idea of seeing a moose strolling through the city. For a brief moment, we all forgot our adult worries and cares. Just the notion of a moose on the loose—harmless enough as long as it didn’t cause any property damage or car accidents—turned us all into little kids.

Somehow this seemed a fitting end to a week that began with a lunar eclipse. Viewing conditions were perfect here the previous Sunday, as we stood outside with friends and watched the moon transition from a brilliant spotlight in the dark night sky to a copper penny. As we gazed skyward, we sang Moon River and Shine on Harvest Moon and Moon Over Miami—every moon song we could remember.

A sense of wonder is a powerful antidote to all the sad, bad, upsetting news in the world. There is always more than enough to worry about—another school shooting, extreme weather, wars, disfunctional politics—and, closer to home, the day-to-day pressures of work and challenges of managing my health.

Then there is the big annual adjustment to fall. Cold, rainy weather this past week dampened my mood. Back to sweaters and leg warmers and layers, wool coats and hats. I turned on the heat pumps for the first time in months and made oatmeal for breakfast. I tried not to think about the winter ahead.

So it was refreshing, once the rain finally ended, to go out for a walk and retrace part of the path that the moose had followed, which is along my normal route. No signs of the recent visitor, but the maples are beginning to turn the color of a lunar eclipse. Acorns and small red crabapples carpet the sidewalks and streets. I noticed a squirrel digging in a flowerpot on a porch, as a dog inside barked madly. It made me laugh. I’m not sure why. Something about the innocence of it all—squirrel taunts dog, dog gets upset, squirrel ignores it and keep doing its thing.

A moose wanders down a quiet city street, looking for home. No one shoots it, except with a video camera. No one captures it. It dodges traffic and disappears into the woods, without a trace.

I wish I’d been there to see it pass by.

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.

Waterlogged

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As every schoolchild knows, water flows downhill. And when its established route is blocked, water will always find a detour.

splash-1192331-639x500These basic facts of the natural world became all too clear to us recently, when we encountered a major plumbing problem in our basement. I almost wrote “disaster” or “catastrophe,” but those words only apply to floods, natural or manmade. Our issue was simpler, by comparison—though a very expensive lesson about what not to put down your toilet.

It all started a couple of weeks ago, after we’d finished a lot of holiday cooking and dishwashing, when I went into the basement to put a large pot of leftover soup in our downstairs refrigerator. To my astonishment and dismay, the entire floor on the unfinished side was wet, and the overflow sink next to the laundry was half full of standing water. The top of the washing machine was sprinkled with droplets. I yelled for Al to come downstairs and take a look with me. No signs of any leaking pipes in the ceiling. No choice—time for the plumber.

The first plumber, Mike, arrived within the hour. He took a look at the situation and quickly diagnosed it. Our home’s main drain was blocked. Water had backed up into the sink and overflowed all over the basement floor. He set about snaking the line that ran from the sink, under the concrete floor to the main drain from the house. But that’s as far as he could go. The sink was still backing up if we ran water from upstairs. He told us not to flush the toilets.

So the next step required a drain specialist. An hour or so passed until the next plumber arrived. He didn’t introduce himself, but I’ll call him Dave. He used a larger snake to get into the main line from our house to the city sewer. Within an hour, he had cleared a big glob of grease from the main line. “It’s like cholesterol,” said Dave. “It just accumulates over time.” We tested the system by flushing the toilets a couple of times, and all seemed fine.

At this point, I was relieved and felt we’d gotten off pretty easily with maybe a $250 plumbing bill. But water finds many creative ways to flow downhill.

The following Sunday, Al and I decided to do more decluttering in the finished basement family room, part of our mega-project for the fall. As we began sorting through the girls’ old collection of arts and crafts boxes, we discovered that the bottom shelf of the plywood built-in cabinet was wet, as was the rug. Quite wet. No sign of leaking pipes. We mopped it up as best we could, assumed that water had somehow flowed from the other side of the basement from the earlier mess, and put on a fan to help dry it up after we’d finished sorting through the clutter.

Everything seemed to be fine. I checked the rug a few days later and it was drying out, so I turned off the fan.

Then, on Friday night, after we’d finished washing dinner dishes, something nudged me to go downstairs and double-check the rug. It was sopping wet. The laundry sink was half full. We pulled everything out of the cabinet’s bottom shelf and discovered a sliding panel. From behind the panel, I could hear water hissing. Al forced the panel to the side, and we saw a series of pipes and valves, but no drips. One pipe had an open end that was covered with duct tape, for some mysterious reason.

Al went upstairs and turned on the kitchen sink, as a test. Suddenly water started pouring out of the duct-taped pipe. It had backed up again into the laundry sink and was, for some reason, overflowing into this pipe and onto the cabinet shelf and rug. So, now we knew why the rug was wet. And why it had been wet before. And how much time had elapsed from the first soaking to this one.

Over the weekend, we called our regular plumber again. Despite the fact that we would be paying extra for after-hours, and the on-call plumber’s boss would not reveal weekend rates, it couldn’t wait until Monday, because we could not safely flush the toilets.

This time, John came. He was very good natured and quickly assessed the situation. The main line was again partially blocked, and the pipe behind the cabinet had connected to another sink at one time, but was never properly capped. Fixing that problem was easy. The blockage proved stubborn. He tried snaking into the main line from the house and was able to relieve some of the issue, but it was soon clear that we needed another drain specialist. “Looks like some kind of a towel,” he commented, pulling out a small, black, rectangular piece of cloth-like material.

At this point, I was feeling uneasy. Not only were the overtime hours adding up, but I had a sneaking suspicion that I knew the cause of the blockage: so-called flushable bathroom wipes. I have relied on these for years for personal hygiene, because my fingers are so damaged that toilet paper alone does not do the trick. I was going to need another strategy.

John’s drain specialist was unavailable that afternoon, so I searched Angie’s List and found another plumber nearby. His company also charged extra for weekends, but at least, this time, he quoted me a rate over the phone.

Joe arrived within an hour. He came with heavy-duty snaking equipment, enough coil to reach 100 feet, if necessary. He took a careful look and agreed that the main line was the place to start. But he wasn’t sure if that was the whole issue. He was correct.

Four hours later, after snaking the main line to the street twice and the main standpipe, through the pipe under the concrete floor, out into the main line to the street, Joe was finally able to clear the system. He explained a lot about our plumbing as I watched him working very hard. I got plenty of exercise going up and down the stairs to run the tub and flush toilets, so we could check water flow. At least a dozen of those little towelettes came up, snagged in the snake coils, to confirm my suspicion. The wipes were most assuredly not flushable. One very expensive lesson learned. If I still use them, I can’t flush them.

But we’re not done, yet. Vibrations from snaking the old cast iron standpipe caused something to crack in the connection between the kitchen sink and the pipes above. The pipes are in a wall. So we have more expensive repair work to do this week. And we can’t use the kitchen sink until we finish the job.

“It’s only money,” said Al, philosophically.

Joe cleaned up his mess. He made notes for the next plumber about what he’d done. His bill was expensive, but he’d earned every cent. We went out to dinner, then to Home Depot to rent an industrial vacuum to suck the water out of the rug. We’ll probably have to replace the rug sometime soon, but not until the rest of the mess is paid for.

At least we found a good plumber. As Joe said, “You ask five different plumbers and you’ll get five different answers.” Now I know which one to ask, first.

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.

Image Credit: Patrizia Schiozzi