Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

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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.

The White Glove Test

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Years ago there was a commercial—at least, I think so, because I can’t find it on YouTube, which is, of course, the repository of all things ephemera—that involved a nosey neighbor who wore white gloves. She would come to visit, and while her hostess wasn’t looking, check to see if there was any dust on the furniture by swiping a tabletop with one of her gloved fingers. Heaven forbid if she found a smudge and you failed The White Glove Test. Your reputation as a proficient homemaker would be ruined.

That was, of course, back in the day when women wore white cotton gloves to go shopping and white kid gloves to a cocktail party. My mother used to outfit me and my sister in white cotton gloves, black patent leather shoes and roll brim hats with grosgrain ribbons that dangled down our backs when we went into New York City for an outing. You could walk into any department store and find a variety of fine gloves for every occasion, and a saleswoman who knew how to fit you.

No more. So when I recently had the brainstorm to use white cotton gloves at night to relieve my ulcer-ridden fingertips from the bandages that have begun to shred my skin like cellophane—an insidious problem that seems to have arisen from some kind of reaction to the adhesive in the only bandages I can tolerate otherwise—I went online.

This is why I love the Internet. Type in a phrase like “white cotton gloves,” and you discover a variety of options plus an anthropological snapshot of how our culture has evolved from the formality of the early ‘60s to our denim-casual style of 2013. No dress gloves in the top ten. But you can find white cotton costume gloves from party stores and white cotton gloves from parade uniform suppliers.

Dress-up resources aside, the best option, for my purposes, were white cotton gloves from a photography supply site for handling archival film and other materials that shouldn’t get smudged by the natural oils in your skin. The kind of oils I don’t have enough of to keep my fingers lubricated and my skin elastic.

These lightweight gloves cost about eight bucks for a dozen pair. They are so thin, I can text with them on my iPhone. And they’re hand-washable.

Best of all, they seem to be helping my skin to heal. My new routine at night, after I shower and bandage any ulcers that are open wounds, is to slather my other fingers with a really good moisturizer, dip the most delicate tips in Aquaphor ointment (which I’d normally bandage for protection from overnight cracking) and pull on the gloves.

It feels absolutely luxurious to get out of those bandages, even while I sleep. And the treatment is working. In just a few days, I went from seven heavily bandaged fingers to four. This is a major accomplishment. Especially in January in New England.

If I’m not going out of the house, I can even cut back to two bandaged fingers, and either wear hand lotion under a pair of the white cotton gloves to protect my fingers while I type (I cut down the fingers on one pair and stitched them on my sewing machine to fit my stubby fingers for day use), or swaddle the most sensitive tips in white cotton-polyester finger cots—like little white socks for your fingers, which I also found online.

Now, you may ask, why didn’t I think of this before? I’ve spent a small fortune on bandages, ointments and dressings to protect my fingers over the last 30 years. Honestly, I don’t know. Probably because I’ve been so focused on finding the right bandage that it didn’t occur to me. Also, my finger skin is extraordinarily fragile because my circulation is lousy, even with medication. And I’ve had far too many infections. So I’ve always erred on the side of overprotection at the first sign of damage. What spurred this latest experiment was a conversation with a wound care specialist. When I showed him my shredding skin, he said you need to get out of the bandages. His ruminating about silicon finger protectors got me thinking about low tech solutions, and here I am.

The system is not foolproof. Of course, nothing with scleroderma can ever be that simple. I have to continue to be vigilant, to catch any skin cracks or scaling, and just keep moisturizing during the day. The finger cots really help with this, because I can moisturize any damaged skin, slip on the cot, and keep going.

Right now I’m typing with four bare fingers on my right hand. One, my ring finger, has had an ulcer that has refused to heal for at least six years. I’ve gone without a bandage or open sore on that fingertip for over a week. In January. In New England.

So, miracles can happen. I’ll continue to bandage up against dirt, bacteria and the elements when I go beyond my doorstep. And I know that my ulcers will continue to wax and wane. But at least I can get some relief at night. And who knows. Maybe white cotton gloves will come back in style someday.

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.

Fantastic Voyage

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In 1966, when movies still cost 50 cents and popcorn a quarter, I went with a friend to the Peekskill Paramount movie theatre on a Saturday afternoon to huddle in the crowded balcony with a bunch of other giggly, wise-cracking kids and watch Fantastic Voyage.

In what has become a sci-fi classic, a team of miniaturized surgeons enter the body of a scientist to zap a life-threatening, inoperable blot clot in his brain; the scientist is the only person in the world who knows how to make the miniaturization state last more than an hour, a secret essential to U.S. Cold War military strategy.

The team travels in a mini submarine through blood vessels and organs, battling antibodies along the way and a fiendish saboteur in their midst. If that isn’t enough to pique your curiosity, the movie stars a very young Rachel Welch and won two Academy Awards for some pretty neat special effects before the days of computer animation.

I’ve been thinking of this movie lately and just added it to my Netflix queue. One of the curious aspects of living with a complicated disease for so long is that I’ve seen more and more of my own internal landscape in recent years. With each new complication of my scleroderma, there are tests and more tests. And with digital imagery and optic probes the norm in medicine, and X-ray results easily viewed on an exam room computer screen, I’ve seen some pretty fantastic, albeit sometimes disturbing, sights.

There are the basics—all the many, many X-rays of my deteriorating hands, with each iteration revealing less bone at the fingertips and more starbursts of calcium floating under the skin. There are some foot X-rays, too, more recent, to confirm calcinosis in my toes.

There was the MRI of my chest a few years ago, when a CT scan to check rasping in my right lung (a possible sign of interstitial lung disease) revealed a questionable spot. It turned out, my pulmonologist explained while we toured the results on his computer screen, that the spot was nothing to worry about, just evidence that I’d contracted histoplasmosis years before, probably while spelunking one weekend near Pittsburgh when I was in grad school. As he scrolled through the MRI, the inside of my lungs revolved like the ceiling of a planetarium speckled with tiny white stars. Some scarring, yes, but so far, nothing too debilitating.

There have been regular echocardiograms to monitor signs of pulmonary hypertension, a late-stage scleroderma risk. Sometimes I close my eyes and try to doze through this non-invasive but often uncomfortable procedure, which requires the tech to press a rolling probe all over my chest and ribcage. Other times I’ll distract myself by watching the dark computer screen, with its blue and red images of blood surging through my heart, like an animated deKooning.

More tests. A CT scan of my brain and skull X-ray one Fourth of July weekend when I started to go numb on the left side of my face. Cross-sections of my very own convoluted gray matter. Yes, that’s where all those thoughts and images and feelings ping around. No stroke, thank God; rather, an inflamed trigeminal nerve was the culprit. But there was something eerie about seeing an image of my own facial skeleton, not some Halloween mask—the exact position of my eye sockets, nasal cavity, cheekbones, jaw—shades of what will remain when the rest of me turns to dust.

Of course, there have been all the routine images, too—ultrasounds of my womb when I was pregnant with Emily, the squashed elliptical pancakes of my breasts as seen on a mammogram, a slew of dental X-rays revealing how some of the roots of my teeth are resorbing—a rare scleroderma complication. Fortunately, I slept through my colonoscopy a few years ago.

I’ve seen the pink marbled walls of my bladder and the black-and-white image of a PICC line snaking into one underarm vein and then the other, when the first side was blocked by too much scarring. Not fun.

Most intriguing, once we got past the unpleasantness of inserting an optical probe through my nose, was a view of my pharynx. This took place when I saw a speech therapy specialist a few years ago to evaluate problems with swallowing. There are times that I feel like food gets stuck in the back of my throat, and I worry about choking. She handed me items to swallow—crackers, apple sauce, Jello—tinged with Kelly Green food dye, so we could see if the pathway to my windpipe closed properly as I ate. It did, a great relief, and also fascinating. I thought of a camera lens opening and closing when you squeeze the shutter.

I’m sure, as time goes on and my scleroderma does its own thing and medical technology becomes ever more sophisticated, I’ll see even more of my innards. Not the kinds of images you put in your photo album, like pregnancy ultrasounds. But miraculous, nonetheless. Even if the reason we’re digging around with probes and such is due to damage caused by an insidious disease, I’m still amazed by the view.

We take our bodies for granted, all the inner workings so hidden beneath our skin. If we could see what was really going on inside, all the intricacies of our interior universe, how the balance here affects the balance there, would we take better care?

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 New Normal

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After Sandy skirted most of Massachusetts and spared us from week-long power outages and cold I couldn’t manage; after the nail-biting climax to the presidential election; after the Nor’easter that turned out to be more of a threat than a reality in these parts; after a major water main broke in Worcester last week, forcing the city to shut off the entire water supply for the night and institute a 48-hour boil order that had me fretting about how to keep my ulcer-ridden fingers free of infection; after all that, when the water was clean and the power was on and the heat was working and the sun was out—I came home to my email last Wednesday to learn that Israel and Hamas-controlled Gaza were shooting rockets at each other and all hell was breaking loose just 44 miles from where our oldest, Mindi, lives in Tel Aviv.

It was about 8:00 p.m. when I sent Mindi a text to find out how she was doing—3:00 a.m. her time. I figured she’d see my message when she woke up for work.

A few minutes later, the phone rang. It was Mindi. She had been out late with friends, talking about the situation, finding out who of her friends in the Israel Defense Force had been called up. She sounded okay, tired but confident, and it was a great relief to hear her voice. We agreed she would check in again on Thursday.

The next day, I was working on a project, trying to concentrate while scanning whatever news I could find about events in Israel. American media were still preoccupied with the Petreaus scandal and election aftermath. I discovered the Times of Israel live blog, which gives excellent up-to-the-minute coverage. I sent Mindi a text about when I would be home to talk.

Around mid-day, the phone rang. I recognized Mindi’s caller ID and answered right away. Long pause on the other end.

“I know you’re going to hear about this, so I wanted to tell you there were sirens in Tel Aviv today,” she said. Her voice was measured, carefully paced so as not to upset her already anxious mother. She explained how she had gone to her apartment’s bomb shelter for a half-hour, no damage from the rocket attack, and she was doing okay. Neither of us knew what to say. I tried to stay calm and absorb her news. We agreed she would continue to let me know if there was another attack. I told her I loved her. We hung up.

I spent the rest of the day trying to understand what was going on. I couldn’t concentrate. I was fighting tears. I skipped my evening dance class to be home with Al. We spoke to Emily and shared all of our concerns. I read as much as I could online to stay informed.

Friday morning, I woke around 7:00 a.m. to find a text from Mindi that there had been more rockets, but she was fine. She sent me a picture from her iPhone of a Fox news reporter interviewing people in a Tel Aviv café, shortly after the all clear. I asked her if she knew where the public bomb shelters were. She wasn’t sure. I spent the next 20 minutes on my iPhone, researching, and discovered that underground parking garages are on the list. I sent her all the links. I wondered how this could be, that I was looking up information about bomb shelters in case my daughter is on the streets of Tel Aviv when a rocket lands. Later, as I read of Hamas’s threats to send suicide bombers into Israel if the IDF sends in ground forces to Gaza, I texted updates. “Please don’t ride the buses or go to cafés right now,” I wrote.

On Saturday, I was relieved to read that the IDF had placed a fifth Iron Dome anti-missile defense system in place to cover central Israel. Hours later, it downed another missile heading for Tel Aviv. Mindi wrote, reassuring me she was fine and with friends.

On Sunday, I woke to a 6:45 a.m. text that more rockets had been intercepted while she was taking care of her toddlers in the Tel Aviv nursery school where she works. They were fine, she wrote. Then another message, about six hours later, that there was yet another missile attack, again intercepted. She went to the bomb shelter in her apartment. We texted a bit. She was on her way to friends for dinner. I told Al, who was outside, raking leaves. Then I went back to my writing, taking care not to bang the fingers sprouting new ulcers from all this stress.

Later, we spoke by phone. “You sound sad, Mom,” she said, edgy. No need to be concerned, everything is normal here, she insisted. I understood. She was coping on her own, and I needed to back off. Our old dance.

And so it is. My new routine: reading updates several times a day to keep on top of the news and any glimmer of a cease fire, trying my best to concentrate on my work and what’s in front of me, trying not to worry about my very capable 24-year-old who can manage by herself when rockets are flying toward her city, thank you very much, praying for peace, praying for the safety of innocents.

It’s amazing what you can get used to. Like the coming and going of strange, extreme weather. Like learning how to bleach your hand-washed dishes during a 48-hour boil order. Like sprinting to a bomb shelter within the two minute window you have after an enemy rocket launches toward your city, then going about your business. Like accepting that you have no control over what’s happening to someone you love so much, so far away. Like living with the drip-drip-drip of a chronic disease. Amazing.

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.

Meter Wars

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Years ago at an amusement park with my parents and sister, I remember standing in the arcade, watching a guy in a car-like booth trying to steer through imaginary traffic displayed on a video screen. As the timer ticked, images of people and cars jumped into view, and the guy stomped on the brakes and spun the wheel round and back, round and back, to avoid “hitting” them. The little crowd that had gathered to watch had a good laugh. I think he probably ran over quite a few pedestrians before the game was over.

I often recall that scene when I’m driving in downtown Boston. You never know when someone’s going to run into traffic, pass you on either side riding a bicycle, double-park in front of you, speed around you in a taxi or pull some other stunt in the race to get wherever they’re going.

But the biggest prize in negotiating Boston traffic, aside from arriving at your destination on time without an accident, is finding on-street parking.

Lately, when I’ve had appointments downtown, it seems that the major parking garages are only accepting monthly permit customers, and the Boston Commons garage, while usually available, is a often a longer walk to my destination. Plus, even with a coupon, the garages are pricey. So if I see a site, I grab it.

This happened last week, during Thursday’s Nor’easter. By a miracle, I saw a great space on Boylston, only a couple of blocks from my appointment. But there was one problem: The city is switching over to those new meters that take coins, cash or plastic.

Now, I like the idea of not having to carry exact change in quarters. You need a lot of quarters to feed the meter. But I have an extremely difficult time inserting and removing my debit card in these new machines.

Still, a good parking space is a good parking space, and on a chilly, rainy, blustery day, the less distance I have to walk, the better. So I quickly parallel parked, gathered up my purse and headed to the payment meter.

This one took bills, too. Great, I thought. Then I tried inserting a dollar. The wind was whipping the bill, and, of course, this dollar had a little bent corner, so I was standing there in the cold rain, trying to straighten it out and insert it into the slot. But the meter wouldn’t accept it. I tried reversing the bill. No luck. Each time, the wind nearly ripped the bill from my hand, and my fingers were getting numb.

No choice but to try the debit card. Here’s the issue: For some reason, the way these machines are designed, the slot is very deep and tight, and only a narrow edge of your card protrudes. So it’s very hard for me to grip the edge, because my fingertips are resorbed and sore from ulcers. It’s even more challenging when it’s cold out, since I have to take off my gloves to use the machine and my Raynaud’s kicks in. To compound the problem, for some reason, you have to insert the card and remove it quickly for the machine to read it. I find this next to impossible.

The last time I confronted one of these machines, in a Cambridge parking lot, I had to ask another person who was waiting to use it if she could insert and remove my card for me. This took a leap of faith, since it was my debit card. But fortunately, she was honest and helpful, and I was able to make the transaction.

This time, however, people were hustling down the sidewalk, focused on getting out of the wind and rain. There was a woman parked in a car right next to the payment machine, but I didn’t want to alarm her by knocking on her window. Anyway, I felt really stupid not being able to use the damn thing.

So I just kept trying. I inserted my debit card and tried to pull it out. Bad card read. I turned my hand sideways to try to get better leverage removing it. Bad card read. I tried using my right thumb and left forefinger to grab it. Bad card read. Finally, somehow, on about the fifth or sixth try, I managed to insert it and pull it out in time. This gave me the great privilege of paying $2.25 for nearly two hours on the street instead of at least $16.00 in a garage.

I removed my receipt and proudly placed it on the dashboard of my Prius. One of life’s little victories. But if someone out there is interested in designing a better, accessible parking meter that can be used by people whose hands don’t work, I’d be glad to consult.

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.