Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Smell

Come Sail Away

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Last Tuesday, I was living on a boat. A sailing yacht, to be specific, harbored in a marina in Oakland, California. We were on the West Coast this past Memorial Day weekend for my niece’s wedding, and Al and I had extended our stay by a few days to do some touring.

We found the boat through Air B&B, which has become my favorite resource for traveling. Forget hotels. You can find some really special places, save money and meet really interesting people.

IMG_0561For the first three days of our trip, we stayed in a lovely apartment in Oakland, not far from Jack London Square, a convenient BART stop and the ferry to San Francisco. That was a perfect location for getting to the wonderful wedding, which took place amidst a cathedral-like grove of redwoods at the UC Berkley Botanical Garden, Saturday night.

The next day, Al and I moved on to the sailboat, which had been lovingly restored by our host. A British expat, he had lived all around the world, ended up in Oakland by a series of events that started with not being able to bring a puppy back to England without quarantining his pet for six months, and eventually bought the boat from another sailor who had intended to take it on a worldwide journey, but had given up his dream when his marriage fell apart.

Our host showed us the before and after pictures—from a nicotine-stained, trash-filled (literally—tons of trash) hulk, he had transformed it to its current pristine state. The living quarters (I’m sure there’s a sailing term for it that I don’t know) are finished with teak. The sails are made of classic, brick-colored canvas.

The marina was very calm, and our floating home rocked gently. Al never noticed it, though I continued to feel the boat’s movement even when we were on dry land. But it didn’t bother me (contrary to my experience with whale watching back in April).

What struck me most about the boat, however, was how it forces you to be mindful—of space, of water use, of storage. Close quarters required me to step carefully. Once I learned the ship’s contours (and banged my shin a couple of times), I could get around and up and down the ladder to the deck quite easily.

I figured out all the wooden latches for the closets and the trick to opening the bureau drawers (all this was built into the walls), which, to my amazement, did not fight my fingers. I even learned how to take a hand-held shower in the little bathroom. And all three nights, we slept soundly in the cozy bed built into the cabin at the boat’s bow.

But the best part of our stay was the morning we chartered our floating home for a sail around the Bay with our host and a mate. Our host is a very experienced sailor, as well as a great conversationalist, and he was more than happy to answer all of my questions about the art of sailing, in-between raising and lowering the sails, tacking, coming about, and skillfully avoiding other boats whose pilots knew less about rules of the waterways.

As we neared the island of Alcatraz, the wind was stiff and the water quite choppy. But even as we got splashed, sailing at nearly a 45 degree angle, it was a treat. There is something magical about being powered only by the wind, gliding past a sea lion bobbing in the water as pelicans sail overhead.

Our host let us off at one of the piers along San Francisco’s waterfront, and we went on our way, exploring the city. When we returned to our sailboat later that evening, I felt like I was coming home to an old friend.

We were sorry to leave. The one consolation was our plan for July, when we venture to Italy for the first time. No boats for lodgings, but so long as we both stay healthy enough to travel, we’re ready for more adventures. Once the travel bug bites, there’s no turning back.

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.

That’s a Wrap

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23924473493_f89d1e0822_zWould someone please explain to me why a cucumber requires shrink wrap? I’m talking about English cucumbers, the long ones that have a very crisp texture and fewer seeds. Their skins aren’t as tough as regular cukes. But shrink wrap? Really?

I hate that shrink wrap. It is next to impossible for me to strip it from the cucumber. My fingers just can’t grip that well. And it clings so tightly, the harder you pull, the more it resists. Honestly, all I want to do is make a salad. Why does it have to be so difficult?

Here are some other food packaging items that drive me crazy:

The plastic film covering, beneath the lid, that clings to the rim of sour cream tubs and yogurt containers. (Those plastic lids aren’t so easy to pry up, either.) I usually have to grab a knife to slit them open, because I cannot grasp the longer edge you’re supposed to use to strip the film away.

The tight foil covering of my calcium chews. These come wrapped individually, with neatly turned ends that are folded the way you wrap a birthday present. Picking those ends up with what’s left of my finger nails takes patience, to say the least.

Plastic screw tops with perforated extensions that twist off when you first open the jar. Usually, I need to wear a pair of rubber dish gloves to be able to hold on without my hand slipping and twist without injuring my skin. I have an adjustable jar opener, but it doesn’t always do the job as well as it should.

Sealed plastic bags for items like shredded cheese that have molded ziplock seals. The idea is that you can reseal the bag after you open it the first time. Problem is I can never pry apart the ziplock, so I inevitably cut it off and put the bag in another plastic bag with a usable ziplock—or just use some other clip to keep it shut. Just give me a bag that opens easily, please.

Sealed plastic wrappers inside sealed cereal or cracker boxes. I can never, ever, pull them apart neatly. It seems like these wrappers used to open easily, but now they are made of some kind of heavier plastic that just won’t yield to my fingers. So I usually ask Al to do it for me.

He, of course, is my secret weapon for all of the above and more. Sometimes I wonder if I depend too heavily on my husband for help with all of these simple tasks. I know I should find more adaptive tools to tackle hermetically sealed packaging. But then I have to have those tools handy every time I try to open something. Which is a nuisance.

Some days, like the other night, when I was rushing to make dinner and had to keep struggling with food wrappers, it’s just plain tiring. And wasteful. I do my best to recycle, but some of that packaging has nowhere to go but the trash. We live in a litigious, germaphobic culture where shrink-wrapped cucumbers are the norm. Even if my hands worked perfectly, there has to be a better way.

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: Ajax Great

Sounds of Silence

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I should be over my rotten cold by now. It’s been more than a week, for crying out loud! For those of you who read last week’s entry, I’m happy to report that my childhood friend was happy to get together for a rare Boston visit, despite my emerging symptoms. But by Thursday, I tanked. Not only was I sneezing and coughing. I lost my voice.

The timing couldn’t have been worse. We had a big weekend, celebrating one of my brother-in-law’s 70th birthday, with family visiting from all over the country. And I wanted to be there, and I could not just sit there. So I whispered and croaked through conversations. We hosted my other brother-in-law and one of his daughters as house guests, and both Mindi and Emily were home, too. It was great. Except I really shouldn’t have been using my voice, and I probably set myself back several days.

So now I’m doing my best to keep silent. This is not easy for a woman who is very verbal. On the one hand, it’s been a blessing to have a quiet house to work in so far this week. I can express myself via email and text messages and writing for clients, as well as through my own creative writing.

On the other hand, I can’t talk on the phone with anyone or conduct a meeting or get together with a friend or have a simple conversation with Al. Every time I speak, he tells me (with more than a hint of pleasure) that I need to rest my voice. He’s right, of course. There is no way to heal laryngitis other than silence. Even whispering is damaging (as Emily informed me via an article from Scientific American).

So over dinner Monday night, I wrote Al notes on a yellow pad and he spoke in response. Interesting way to communicate—totally different rhythm. At least I didn’t have to repeat myself. I wish I knew sign language.

I’m experiencing silence at another level, as well, because my left ear is blocked up. Even as my sinuses are finally clearing, my ear is not, yet. So external sounds like music on the radio are a bit muffled, although certain soft noises are quite clear (a dripping faucet, crinkling paper). And eating or brushing my teeth is amplified—as well as my tinitus. The ringing is really loud.

Scleroderma adds a layer of complexity, of course. Since I have Sjogren’s syndrome, I have to think very carefully about how to use decongestants, trading off the boomerang risks of nasal sprays with the discomfort of making dry mouth worse at night. Too much oral decongestant sets off my Raynaud’s. Adhesive nasal strips at night help my breathing but can irritate the delicate skin on my nose. Most of all, I need to do whatever is necessary to get a good night’s sleep. On and on it goes. Hard to be patient.

Fortunately (I certainly hope), my voice and hearing loss are transitory. But it surely makes me appreciate the challenges that those who live with permanent speech or hearing impairments have to deal with every day. I’m also very grateful to be able to work for myself at home and not lose income because I can’t report to an office setting when I feel this way.

Okay, enough complaining. Thanks for listening, Dear Reader, and may you avoid a rotten spring cold of your own. Be well.

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: David Di Biase

Season’s Greetings

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IMG_0491 3Punxsutawney Phil is a liar. The prognosticating ground hog promised a short winter when he failed to see his shadow back in February.

Well, it’s the first week of April, and it snowed here Sunday and Monday. Today’s low is in the teens. My Pilates class was canceled last night because the roads were a mess.

Saturday afternoon when I took my walk, I was marveling at the green lawns, the daffodils and hyacinths in bloom, budding leaves. All that is blanketed in white, now. And even though I know the snow will melt in a few days and be forgotten soon enough, I’m just sick and tired of winter weather.

I’m tired of wearing layers of sweaters.

I’m tired of mittens.

I’m tired of leg warmers.

I’m tired of wool hats, chap stick and full-length down coats.

I’m tired of my hands turning blue and my digital ulcers smarting if I don’t pile on all that stuff.

Yup, I’m more than ready for consistently warm weather. (Hear that, Phil? The key concept is consistent.) We’ve had some crazy fluctuations lately, from balmy teases to frigid temps, sometimes within a period of hours.

I know, I know. It’s New England. “Wait a minute and the weather will change,” and all that. April here is finicky. I still have snow tires on my Prius (thank goodness).

But, come on. It’s enough already. You’ve had your turn, Old Man Winter. Give spring a chance. Is it really too much to ask for enough warm afternoons to unfurl leaves and unleash the smell of freshly turned soil? Do you have to freeze the tulips before they’ve flowered?

I’m not the only one asking. After such a long, dark season of too much political angst and bad news, we could all use a boost.

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.

Excavations

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Decluttering the house remains high on my list of things I want to accomplish this year. So last Thursday, Al and I agreed to take time out from work responsibilities to once again tackle the basement family room.

recycling-1239302-639x426It’s really a family room in name only, now. Both of our daughters are grown and living on their own, and neither of us spends any time in that space anymore.

The television is huge and old and no longer attached to our cable, because we would have had to pay for an extra signal conversion box. The DVD player stopped functioning at some point. Toys and games from the girls’ childhood gather dust.

We had started the decluttering project last fall, but stalled when we discovered a major plumbing leak, fixed soon after. The room needed to dry out and, well, we got busy. Not that I didn’t think about it every time I went down to the laundry room on the other side of the basement.

But one of my greatest frustrations with my hands is that I cannot take on any part of major cleaning and organizing on my own. If I try to dust or vacuum, I inevitably smash my fingertips, which are severely resorbed and very painful when banged. Same goes for when I pull old papers out of boxes or move cartons or sort through books.

Fortunately, Al gets it and knows how to help me. He pulls stuff out of boxes and off the shelves, reviews it with me, and then we make a decision about what to do with it: donate, recycle or toss.

We must have sorted, stacked and bundled for at least four, maybe five hours. In the process, we filled several cartons and bags with print materials from my years working in higher ed marketing (I saved my favorites and sent the rest to recycling). I fished through a carton of old sewing patterns, many of which were decades old, and relinquished them for recycling, finally admitting to myself that they were really too dated to ever reconsider making. (The only ones I did save were patterns for a teddy bear, a timeless summer dress and my wedding gown.)

Of the toys, we saved the classics—LEGO sets, wooden Lincoln Logs, blocks, a box of flocked horses, jacks, marbles, a traveling backgammon board that I thought we had lost, a magnetic Scrabble game, jigsaw puzzles and the like. The rest of the old board games, baby puzzles and toys, we donated to a city neighborhood center. The spare office chair went to Goodwill. We pulled together family videotapes to digitize on DVDs. I wound balls of yarn from half-finished knitting projects to bring to my weaving class.

So, we made progress. But there is still a lot more to do. And it’s dusty down there. It took me at least a day to feel like my lungs were clear. I may just have to hire some help to get that under control before we excavate some more.

We are fortunate, I know, to have had the resources to acquire all this stuff over the years—and a home to fill. But the older I get, the less I want to keep. The most precious finds in our family room didn’t take much space at all: a few loose photographs of family events long forgotten, memories of the tapes we used to watch together when the girls were young, a little wooden toy village small enough to fit in a matchbox that had once been my mother’s.

Ultimately, the best way for me to preserve what I really care about, in the least space, with no cleaning or dusting or other maintenance required, is simply to write about it. Thank goodness, I can still rely on my hands for that.

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: Griszka Niewiadomski