Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

finger ulcers

Anniversary Waltz

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Last week, Al and I celebrated our 31st wedding anniversary. We agreed that we wouldn’t buy gifts. More important just to spend quality time together, a welcome break from the usual hectic midweek schedule.

OLYMPUS DIGITAL CAMERAWe shared a quiet, delicious meal and a bottle of wine at our favorite Afghan restaurant. Then, on Saturday night, we enjoyed an extraordinary performance by Cirque de Soleil. And we began to plan our next trip for this coming summer—another special adventure to look forward to.

All of this was good and lovely and memorable.

But it was a very different kind of sharing on Sunday night that once again impressed upon me the blessings of our three-decades-plus marriage.

I was in the process of cooking dinner, when I reached out to open my small Cuisinart to chop up some parsley—and smashed the tip of my still-healing, infected digital ulcer on the gadget’s plastic top. It really, really hurt. Like slamming your finger in a car door.

I yelled and cursed as I walked in circles around the kitchen, trying to breathe my way through the sharp wave of pain. Usually this passes within a minute or so, but this time I really did a number on myself. The pain would not quit.

Al had been reading in the living room. In the midst of my outburst, he walked into the kitchen, opened his arms and gave me a big, soothing hug. It didn’t take the pain away, but it did help me to relax a little, the first step in gaining control of acute pain.

During the course of our meal, he proceeded to distract me, since I was still pretty uncomfortable. By the time we finished, with the help of some Tylenol, I was doing a bit better.

As Al washed the dishes, I reached into the cabinet near the sink for a mini Three Musketeers, left over from Halloween.

“You deserve that!” he said. I laughed, and agreed.

Just another episode of managing my scleroderma. We’ve been through this many times. He knows what to do, without my asking. And he never, ever complains about all the mishegas that this disease has brought to our marriage over these many years.

That is something worth celebrating. Love you, Al.

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: Naama y.m.

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

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

Hands On

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How did it get to be July, already? With Independence Day behind us, summer is really here. It’s sunny and lovely and warm, and my hands are happy. I’m down to two bandages for my digital ulcers, one on each thumb. Always remarkable this time of year when I can feel with most of my fingertips.

photo-24This has been especially helpful because I’ve been sewing dresses. We’re getting ready for vacation, traveling through Europe to mark our 30th wedding anniversary (last December) and to do some research for a novel I’m writing.

It’s been unseasonably hot there (no complaints from me, although I’m encouraged that the forecast does not include temps upwards of 100 F, which was the case this past week). Dresses, as a friend observed, are easy. You don’t need to figure out what goes with what. Just slip one on, and you’re ready for the day.

One of the great joys of sewing is feeling luscious fabrics as your create your outfit. I’m working on a pattern for a wrap dress, and I found a buttery soft, beautiful rayon matte jersey print to sew.

I’ve learned from many mistakes that it’s best to test the pattern and any alterations first, before risking the good fabric, and I found some black and white cotton jersey in my fabric stash—perfect for experimenting.

So now the test garment is completed, and it looks and fits well enough to take along on the trip. I cut out all the good fabric and began constructing the second version on Sunday. It sews and serges like a dream, and I’m on schedule for finishing before we leave.

Best of all, my hands are fine. Despite whacking one finger on my serger and pricking another with a pin, they feel good as I write. I sew mostly by machine. The serger, which sews, trims and overcasts seams all in one step, is a tremendous help, saving time and extra hand motions. Even though it requires a lot of care when threading (and can be persnickety if I miss a step), it is a real boon. My other essential tool is a good pair of bent-nose tweezers, which helps with all the tiny manipulations I can no longer do with my fingertips.

I was marveling at the fact that my hands aren’t sore after all that work, and then I realized that fewer bandages really do make a difference. I’m so used to having at least four or five fingers wrapped to protect sore ulcers that going bare is full of surprises.

Travel will undoubtedly cause me to revert to more digital protection. I have all my supplies plus antibiotics ready, just in case. But in the meantime, I am savoring the freedom and enjoying the feel of wonderful fabric. It’s been a long time since I’ve been able to sew this much, successfully—a real summertime treat.

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.

Reprieve

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The windows are open and James Brown belts “I Feel Good” on our local NPR station as I write at the dining room table this Monday evening. Earlier today, I took a walk without a coat, without a jacket, without gloves or a hat. All the trees on our street are leafing, the magnolias are in full bloom, joined by forsythias and rhododendrons, tulips and violets.

NYC SkylineIt actually hit 79 this afternoon when I was out running errands, although my Prius recorded the outdoor temp as 64. I think it was as shocked as I, that it finally looks and feels like spring.

Even better, I’m down to only four bandages on my fingers. Still on oral antibiotics to ensure that one very persistent infected ulcer continues to recede, oh so slowly. Both thumbs will also take more time to heal and a chronic spot on the inside of my right ring finger has acted up. But compared to where I was just a month ago, it feels like my hands are nearly bare.

This is all the more amazing, given that I did a lot of traveling last week. Business took me to Manhattan for an overnight and then a train ride back to Boston for another overnight, to conserve my energy for a writer’s conference the following day. I schlepped my wheeling carry-on bag around Midtown and Chelsea, down and up subway stairs (why are there so few escalators and elevators?), over curbs and streets and sidewalks being torn up and repaired, in and out of hotels, up and down train platforms. One very considerate New Yorker (yes, they do exist) helped me carry my bag up a second flight of subway stairs, but I did much of the hauling myself.

My hands, for the most part, did okay, since I was extremely careful with how I grasped the bag’s padded handle. But my right arm began to protest by the end of the trip. What a relief to discover that there’s a working escalator from the Amtrak platform to Boston’s Back Bay Station (not so for commuter rail tracks) when I arrived late Thursday night—and only a three minute walk to my hotel.

I was also compulsive about wearing gloves and using hand sanitizer throughout the trip. It paid off. No new infections.

I’m getting better at travel logistics. Definitely easier to pull this off as the weather improves. My new coat was just the right weight and protection for cooler, 60ish temps last week. And the travel blanket I carry with me provided the extra layer of warmth I needed on the train, which was way too air conditioned, per usual.

Coming home on the commuter rail to our home station, after a stimulating, rewarding few days, I was wiped. No energy left to read much or write on the train, just watched the scenery fly by. I was grateful I wasn’t driving. I was very glad to see Al, standing near the platform, as we pulled into the station. We enjoyed a lovely Shabbat dinner together at home. I slept soundly.

Tonight, the windows are open and its still 70 degrees. Soul Serenade is wrapping up with “Lord, I Feel Like Going Home.” It’s finally spring.

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.