Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Body

Fantastic Voyage

· · Leave a Comment

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

· · Leave a Comment

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.

A Shot in the Arm

· · 2 Comments

There are some advantages to seeing your doctor often. Mainly, you get to know each other as real people. And you get to know the support staff—receptionists, nurses, aides—as real people, too. This helps. A lot.

Last week, I had one of my quarterly visits to my rheumatologist at Boston Medical. It was an 11 o’clock appointment, which, by definition, knocked out at least three hours from my workday—including driving, parking, waiting and the appointment itself, plus whatever other tests he might order.

I was doing fine on the Mass Pike until I got to the Pike Extension closer to the city. Suddenly, traffic slowed to a near halt. I spent many years commuting to Boston and know the patterns pretty well, so it was a surprise to hit a jam in late morning. I called the clinic to let them know I was stuck.

“You have a 15-minute window,” said the voice on the other end, someone unknown to me. “After that, we can’t guarantee your appointment.” I had already been driving over an hour. I tried to explain that I had no control over traffic. She just repeated the company line. I hung up, thoroughly annoyed, and decided that no matter when I finally got there, I’d insist that they check with my doctor and fit me in.

I hustled around more slowdowns and construction, finagled my way through local traffic near the hospital and lucked out with a parking spot on the garage’s fourth level. When I reached the Rheumatology Clinic, slightly short of breath, it was just past 11:15. The two receptionists that I know were there, totally fine with my arrival time. And, as is often the case, my doc was running late, anyway. I settled in with my Kindle and started reading.

About a half-hour later, when my rheumatologist arrived in the exam room, I related my travel woes. He said in the future, not to worry. “I often run late,” he admitted. “If everyone has to wait for me, it’s only fair that I would fit you in.” Thank you, thank you. Not only is he a great diagnostician, he’s a mensch.

When we finished reviewing my latest episode of cellulitis (he laughed when I quipped how it inspired my blog post the week before) and the rest of my status report, I asked if I could get my flu shot. As he left the room, I promised to send him images of my finger ulcers using my new iPhone, the next time I changed my dressings (we agreed it was a great way to save time and wound exposure in the office visit).

A few minutes later, one of the nurses appeared at the door carrying a hypodermic needle and an alcohol swab in a foil packet. “Evelyn, it’s so good to see you!” she said with a laugh. “It’s been such a long time. You look great!”

A big woman, she opened her arms and gave me a huge hug. This is the nurse who handles all medication refills and who did battle with our former insurance company to be sure I was able to continue with a very expensive prescription when the insurer didn’t want to cover it without insisting I go through an invasive procedure. She won.

We caught up a bit, and then she gave me the flu shot—just a slight pinch, no pain. We said our goodbyes, I collected my stuff and left the exam room. As I set my next appointment for February, I commiserated with the secretary, who knows me by sight, about how neither of us wanted to think about the winter to come.

Maybe it was the hug, but my arm barely hurt the next day.

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.

Waiting for Sandy

· · 5 Comments

Rain drips off the ridge of the bay window outside my home office. Leaves tremble and branches sway. One long, thin lilac branch waves back and forth like a pointing finger. The sky is the color of soaked cotton balls. I can hear no birds, only the patter and plop of rain drops falling off the tree limbs overhanging our roof, and the wind’s sigh.

It’s strange and curious and unnerving, this waiting for Hurricane Sandy, billed as the worst storm to hit the Northeast since the Hurricane of 1938. I wonder where the birds and squirrels go, how they will protect themselves when the gale batters their tree-top homes. We live within the red-lined high wind warning zone in Massachusetts, expecting gust of 40 to 70 miles per hour at some point later today. Maybe overnight. And there will be rain. Lots of rain.

I worry about the trees that sustained so much damage in last year’s freak October snow storm, when the night was filled with the gunshot of cracking branches. Our neighbor’s old Silver Maple toppled into our back yard, blocking our kitchen door and missing the roof by inches.

And I worry about losing power for days. This is my biggest concern. I can’t withstand the cold, even as the weather is mercifully well above freezing this time around. The utility companies have promised speedy, efficient repairs to downed wires. They’re anxious to repair their damaged reputations from last year’s storm that left thousands without power for days and even weeks. We were lucky and provided hot meals and showers for neighbors who went without heat. But will our luck hold again? If everyone loses power to this monster storm, where can we go?

It’s a stark reminder of how control is an illusion—often the way I feel about my health. A week ago Sunday, out of the clear blue, I woke up with cellulitis in my left elbow, just one hour before I was leaving for a two-day business trip to New York. Not knowing how quickly the red, puffy skin infection would spread, I took a gamble on managing with oral antibiotics that I always have on hand, per discussions with my infectious disease specialist, and headed out the door.

For the next 12 hours, on the train, at Penn Station, during meeting breaks and at my host’s home, I kept monitoring the progress of the warm redness, telling myself if worse came to worse, I was at least in a place with a high concentration of excellent ERs. “You know the cost of making a bad call,” warned the ID doc who was covering over the weekend, when I called Sunday night to report that the cellulitis had spread around the side of my elbow. “Yes,” I answered, “it could go septic.”

I promised I would go to an ER if I spiked a fever or if the infection spread any farther and prayed the antibiotics would finally kick in. Somehow, I got to sleep that night and woke to discover that the redness was receding. The rest of my meetings went exceedingly well, and I even had a spare hour to walk the High Line for the first time, under exquisite blue October skies.

That day seems a long time ago, already. Now I’m just sitting here, waiting to see if this mega-storm will be as bad as the forecasts predict, or if it will lose power as it spins over land.

We have no control over these things, of course. Whatever extreme weather we have set in motion with global warming, even if all the nations of the world finally get together and commit to reducing carbon emissions, we will all have to live with for years to come. At least we have excellent weather forecasting, unlike so many caught by surprise when the fatal ’38 Hurricane barreled over Worcester and up the Vermont-New Hampshire border. We’re also blessed with extensive emergency support. But there’s nothing I can do to stop another tree from falling or the wires from coming down. All I can do is stay indoors until the storm passes.

And there’s nothing I can do to prevent another mysterious bout of cellulitis or whatever else my scleroderma throws my way without warning. It just is. All I can do is take care of myself as best I can and not let this disease stop me from living my life fully. From where I sit, there’s no other choice.

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.

What Works for Me

· · 2 Comments

Every case of scleroderma is different. But after nearly 30 years with this disease, I’ve learned a thing or two about how to manage. So here are some basic suggestions that I hope will make life easier for you or someone you love with scleroderma:

Get the Best Medical Care You Can Find
This probably goes without saying, but it’s the single most important step you need to take to deal with this incredibly complex disease. If at all possible, find a medical center that specializes in scleroderma, even if you have to travel for occasional visits. Both the Scleroderma Foundation and Scleroderma Research Foundation can help you locate the nearest scleroderma specialists.

I’m blessed to live within an hour’s drive of Boston Medical Center, where not only the Rheumatology Department has extensive expertise in the disease, but also many other specialists do, as well. It really helps to have a cardiologist or dermatologist or nephrologist who also knows scleroderma, and you don’t find that unless you’re seeing physicians at a center where there’s a critical mass of scleroderma patients.

Get Enough Sleep
We’re all too busy. We all try to pack too much into each day. Especially if you’re juggling work and family and volunteering and aging parents and all the rest, it’s hard to get the sleep you need, even when you’re healthy. With scleroderma, you need to get sleep. Without it, you’ll get sicker. End of discussion.

Dress in Layers, Favoring Natural Fibers
When you need to keep warm, layers are the best way to go, especially if you’re moving in and out of spaces that vary in temperature. Cotton, wool and silk are my favored fabrics for warmth. Years ago, when I was first struggling with Raynaud’s, my rheumatologist told me that synthetics like polyester trap moisture and can make you chillier, whereas natural fibers wick away moisture and allow your skin to breathe. He was right. This is also the reason I wear shoes made of leather or natural fibers. Anything plastic or rubber causes a lot of perspiration and can lead to skin breakdown.

A lot of heat is lost through your head. That’s why, back in the day, people wore nightcaps (not the alcoholic variety) to stay warm in unheated bedrooms. Especially here in the Northeast, hats are a must in winter. I like wearing scarves made of natural fibers, for reasons cited above and because they make a nice fashion statement while keeping me comfortable.

Protect Your Hands
Okay, this is obvious. Here’s what I do:

  • Use disposable latex gloves for all cooking to keep bacteria out of my fingertip ulcers.
  • Wash my hands frequently with anti-bacterial gel. I have to do this to avoid getting my bandages wet. I checked this with my Infectious Disease doc and he said it was fine, contrary to all the hoo-hah about too much anti-bacterial soap causing germs to flourish. When I wash my bare ulcers, I use Aveeno Ultra-Calming Foaming Cleanser. It never, ever stings and is easy to wash off.
  • Use soft, flexible fabric bandages for finger ulcers. These can be hard to find, as many generic fabric bandages now include antibiotic ointment in the pads, which I don’t like. I favor Coverlet Adhesive Dressing Strips, with one caveat—the adhesive is very sticky, and you have to really soak the bandages before removing so as not to tear your skin. These are available online, not in stores. Aquafor Ointment is an excellent dressing. I also use small squares of Sorbsan, a surgical dressing made of seaweed, as a moisture barrier. And I change my ulcer dressings twice a day. Yes, it’s expensive. But not as expensive as getting an infection.
  • Wear wrist warmers. I like Wristies® fleece warmers, but there are now many alternatives on the market. I use these throughout the year, to keep warm in the winter and protect against air conditioning in the summer, and as an alternative to gloves during transitional seasons. They’re very affordable, come in many colors and several lengths, and there are even Wristies with a little pocket for a hand heat pack.
  • Wear natural fiber gloves and use mittens for best warmth. I have a very well-worn pair of leather gloves that are soft and provide ample room for my many bandages, as well as a good pair of down mittens for winter.

Get Regular Exercise
I let this go for a long time. Big mistake. You lose range of motion if you don’t move. One of my rheumatologists gave me the excellent advice to find some form of exercise I really love, because I’ll be able to stick with it. So I’ve been doing Pilates for several years, now, and also a variety of forms of dance—all beginner classes, and I’m a klutz, but it doesn’t matter, because I always feel so much better afterwards, and I’m even regaining a little grace, despite stiff joints. Yes, it’s hard to exercise when you’re in the active stages of scleroderma and so tired all the time. But even walking a short distance in fresh air is better than sitting still in your home, and it’s also good for your soul.

Surround Yourself with People Who Support You 
Many people don’t understand what you’re going through and will offer a lot of well-meaning but useless advice. Others will treat you like an invalid. Avoid them. Find those who will give you hugs when you need it, listen to your angst without criticism or commentary, remind you of your strengths when you’re at a loss, and most of all, who will accept you for who you are, no matter what. This is essential.

There’s much more I could say here, but I’ll save it for future posts. I’d love to hear what’s worked for you, too.

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.