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Season’s Greetings

Evelyn Herwitz · April 5, 2016 · Leave a Comment

Punxsutawney 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

Evelyn Herwitz · March 22, 2016 · 2 Comments

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.

It’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.

Image Credit: Griszka Niewiadomski

The Nose Knows

Evelyn Herwitz · February 9, 2016 · 2 Comments

One of the odd and frustrating complexities of my scleroderma is the production of calcium deposits. Typically these grow under my finger tips, at pressure points. And every so often, they rise to the surface—sometimes painfully, sometimes not—until they break through. Their consistency ranges from toothpaste to a pebble. The calcium can ooze out or poke like a pin beneath the skin.

No fun.

Especially when the calcium forms on the bridge of my nose. This has become a chronic issue for the past dozen years. About every two to three years, I’ll develop a lump of calcium large enough that I have to have it surgically removed in order to avoid the risk of a skin break and infection.

And so it was, a week ago Monday, that I went back to my ENT plastic surgeon to have a lump of calcium removed, once again, from my nose. I used to have a theory that the condition was exacerbated by my glasses (my eyes are far too dry from Sjogren’s Syndrome for contact lenses), and I have gone to great lengths and expense to get only the very lightest weight frames. Certainly these are more comfortable. But after this fourth excision, I’m beginning to think that the bridge of my nose is a little calcium deposit factory, and this is just an inevitable maintenance issue that I’ll face again.

I had felt the calcium lump growing for about a year—not huge, just large enough to poke up and stretch the skin. But our insurance policy was not great, and my specialist was in the second tier, with a big deductible. We couldn’t afford the procedure. Then, thank goodness, Al’s health coverage at work changed for the better (not in small part due to a lot of employee complaints and talk of unionizing). So the first week of January, I called for an appointment. Even though I knew I’d have to heal in cold weather, I couldn’t let it grow any larger without risking a skin break.

Al was able to take the day off and go with me to Boston. After about a half hour wait (during which time a woman sat near us in the busy waiting room and began to play her smartphone music without earphones—and no one in charge said a word), I was called in.

Despite the fact that I had specified what I needed done when I made the appointment (with a referral from my rheumatologist), however, no one seemed to know that I wanted my doc to take the thing out that morning. I made my intentions clear, and we got the ball rolling.

My specialist stepped in to see me, recognizing me right away, even though I haven’t seen him in three years. He checked my nose and started explaining the options, but I stopped him and said I wanted to take care of it now. Then he said, “All right, I’ll have one of my associates take care of you.” I looked at him, a bit stunned, straight in the eye, and said, “I really want you to do it.” So he agreed. I don’t know what was going on with communications there, but thank goodness he’s a good guy and a brilliant surgeon. I absolutely would not trust anyone else.

His resident took care of the local anesthesia. One shot, right where the lump lay. I was actually surprised, because the last time I had this done, I think it took at least two shots, and one was in the nostril, itself. Not a pleasant memory.

Only one problem. As soon as she gave me the shot, I began to shake. My heart started racing. Then I felt a pain in my lower gut, which quickly moved to my lower back. When I closed my eyes and tried to steady my breathing, I could see the light behind my eyelids pulsing with my very rapid heartbeat. When the resident came back in the room (she had stepped out for a few minutes), I asked what was in the shot.

Turns out it was Lidocaine plus epinephrine, a combination I have never had before. (The two are combined to make the Lidocaine “stay in place” and work more effectively.) Fortunately, the side effects passed as quickly as they came—but it definitely threw me. Some people are sensitive, my specialist commented. Yup.

Five minutes later, he had popped out the calcium, a pebble about five millimeters in diameter, and stitched me up. “You have a soft nose again,” he said. I was relieved. With a piece of surgical tape over the incision, I walked out into the waiting room and found Al. I was really glad he was there, because the aftereffects of that shot were still making me feel off kilter.

Anesthesia works through my system very slowly. It took about seven hours before it wore off completely, during which time I tried to sleep, couldn’t, even with a Vicodin, I’m sure because of the epinephrine lingering somehow. I did get to sleep, finally, that night, and was nearly back to normal the next day. By Wednesday, I felt like myself again.

The small incision is almost completely healed, a week later. The stitches are absorbing. I have been able to go without any bandage for 24 hours, even as the temperature has dropped into the teens and we’ve gone from springlike conditions to snow storms over the past seven days. It’s great to have that damn calcium pebble out of my nose.

I made notes so I’ll remember what happened and what to watch out for the next time I deal with this. And whenever I require a local anesthetic, you can be sure I’m going to find out what’s in it, ahead of time. Living with chronic disease means being vigilant, informed and a strong advocate for exactly what you need, when you need it. Nothing less will do.

Image Credit: Tamer TATLICI

Into the Freezer

Evelyn Herwitz · January 19, 2016 · 4 Comments

Okay, okay, it’s winter. I get it. Those unseasonably balmy December days are a distant memory. The temperature is dropping, the wind chill is rising, and it’s downright cold outside.

Five of my fingers are in bandages, one infected ulcer in my left middle finger has required antibiotics for more than a month, and it takes me forever to get going in the morning and to bed at night because of all the hand care.

But I refuse to give in to the weather. Forewarned is forearmed. Friends in Chicago have been telling me about the frigid temperatures there, and it was only a matter of time before the Arctic Freeze came our way. So this past weekend, I found a new pair of mittens with all the right qualifications: lightweight, thermal insulation, with cozy channels for my fingers like an interior glove, suede feel for driving, soft, easy to manipulate. A big score.

I also found a new winter hat (it helps that everything warm is now on sale). It’s one of those fake fur jobs, like a fuzzy bomber’s helmut, that covers my neck and ears and wraps under my chin. I did not buy this for looks. It is far from flattering, given my narrow face and long nose. But no matter. It’s definitely a good addition to my other winter gear, especially when paired with a snug wool hat underneath. It functions like a hood, better than the oversized one that came with my warmest winter coat.

So, the only item left on my list is a pair of insulated winter boots. I’ve somehow managed to go without for a long time, relying instead on a pair of cleated overshoe boots for really bad snow and ice. But they don’t work for driving or city walking. And my rain boots, made of rubber, make my feet sweat when I use them to drive, which only causes my toes to get chilled if I then walk outside.

It’s a lot of work, all the gearing up to go out. Reminds me of when I was a kid and my mom made me wear snow pants over my skirts for school, the kind that had clip suspenders to hold them up. I hated those snow pants. They made my skirts bunch up at the crotch. And those old red rubber boots, the kind with elastic bands as button loops. Clip-on mittens. The works.

Even still, I would play outside for hours in the snow, building snowmen, sliding down the back hill on our old Flexible Flyer, making snow angels. I’d play until my teeth chattered and my fingers went numb. For a healthy little girl, warming back up with a cup of hot chocolate was half the fun.

Now I have to force myself out the door just to walk in this weather. But once I’m all bundled up, I still love the fresh, crisp air, especially after a snowfall. I love the transformation of trees to Belgian lace. I love seeing all the critter tracks, knowing who was in our yard or up the street, otherwise unseen. I love the stark winter light and the way dusk turns snow blue.

So, here’s to you, Old Man Winter. Much as I dread your annual arrival, it wouldn’t be the same without you.

A Walk in the Woods

Evelyn Herwitz · October 13, 2015 · 2 Comments

The leaves are turning later this autumn. Warm weather through September has delayed our annual New England spectacle. The sugar maples are just beginning to splash streets and forests with their glorious golds and oranges and crimsons. And the brightest leaves are just beginning to fall, as they must, as the flow of sap slows and the trees harden off for the winter ahead.

With the trees’ annual cycle of endings have come losses for friends. Three have bid goodbye to parents in the past few weeks–aged 89 to 98. It’s been a time of cooking for shiva meals, joining in evening prayers, hearing stories of long lives, well lived. The last funeral was yesterday, October 12.

Yesterday would have been my mother’s 93rd birthday. She died 16 years ago. She always enjoyed the fall. As leader of our Girl Scout troop when I was in grade school, she took us on camping trips in the woods, where we would sleep in big canvas tents pitched over wooden platforms. I’m sure those adventures nurtured my love of walking in the forest, especially at the height of autumn.

I was thinking of her as Al and I hiked in a nearby state forest on Sunday. My joints began to ache and my legs were heavy by the time we emerged from the trails, but the view and the scent and the refreshing air were worth it. So, Mom, these pictures from our hike are for you. Rest in peace.

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