Raynaud's

Turtling

Evelyn Herwitz · March 8, 2016 · Leave a Comment

I wish I could just roll out of bed and get ready for the day in fifteen minutes. Of course, this has been an impossibility for the better part of thirty years that I’ve had scleroderma. But for whatever reason, lately, I’ve been getting more impatient with the amount of time it takes me to get up in the morning.

Maybe it’s the tease of spring in the air, or the fact that I’m so ready for longer days and shorter nights (at least Daylight Savings Time starts this Sunday).

Or maybe it’s the fact that I have seven digital ulcers right now, which drags out my morning routine.

In any case, there seems no way around the fact that I have to plan at least an-hour-and-a-half, and sometimes two hours, just to get ready for the day.

It starts when my alarm goes off. I don’t wake easily, no matter how well I’ve slept. So I have to plan for a half-hour from the time I set my alarm to the time I actually need to get out of bed, just to give my brain enough time to come to.

After the first of far too many trips to the bathroom (my internal plumbing needs time to wake up, too), I make the bed. It’s how I start moving and stretching and setting everything in order while I clear my mind for the day ahead.

Next I have to wash my tear ducts, first with warm water and then diluted baby shampoo. This is essential so my tears don’t get blocked during the day, a complication of Sjogren’s Syndrome, a secondary autoimmune disease that can accompany scleroderma. It always feels good, and washing my face with warm water followed by skin moisturizer also relaxes my facial skin. (I used to shower in the morning, but it added even more time onto my routine, so now I save that for evening.)

After my eyes are done comes the longest step—hand maintenance:

Remove overnight bandages from my fingers and wash my hands and digital ulcers thoroughly.
Wipe away any adhesive residue with baby oil and wash hands again.
Swipe my fingers with an alcohol wipe. I also clean any mushy ulcers with a dab of hydrogen peroxide.
Prepare all my bandages and cut pieces of absorbant calcium algenate silver dressing to size.
Bandage fingers. Each ulcer takes three layers: Aquaphor ointment, dressing and bandage on top.

Sometimes I’ll do this in silence, as a meditation; other times, I’ll listen to music. Lately, I’ve been reading or listening to election coverage on my iPad while I take care of my fingers. The whole process of bandaging my ulcers takes about a half-hour.

Once I’ve cleaned up all the bandage wrappers and reordered the basket that holds my hand supplies, I take my medications and eye drops. Then I brush my teeth with prescription tartar control toothpaste, an hour before I eat (another maintenance step recommended by my dentist, related both to Sjogren’s issues and trying to hold onto my teeth as long as possible despite root resorption from scleroderma).

Then it’s time for a ten-minute series of stretches that help me to work out any kinks from the night and limber up for the day. Sometimes I’ll listen to music, sometimes not. I try to sit and meditate for a few minutes at the end of my routine, to get centered.

Now it’s finally time to get dressed and put on my makeup, comb my hair, clean my glasses and finish up. This includes using ammonium lactate cream on my feet before I put on socks, to protect my skin from abrasions. The amount of time involved depends on whether I’m just wearing relaxed clothes for work in my home office or dressing up to go to appointments. Skirts or dresses with stockings take longer to put on than a pair of pants and a top. Jewelry can be tricky, since it requires more coordination; I’ve become a scarf aficionado because scarves are easy to put on, colorful and warm.

Downstairs in the kitchen, while heating water for tea, I use a sinus rinse in the adjoining bathroom—another step in Sjogren’s maintenance. And after breakfast, I take my Ibuprofen, for managing joint pain, with some yogurt, which helps my GI tract function better.

It’s a lot to do, a lot to remember. I have my routine worked out as best I can. I wish it weren’t so complicated and often tedious. Sometimes I wonder how I’ll be able to manage all these tasks when I’m older and frailer and need help. Other times I wonder if I’d actually be able to save time if I had some help. But being able to take care of my own needs remains my priority for as long as possible.

So, I keep on plugging. Every morning, I feel like a turtle. Slow and steady, slow and steady.

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: Bill Sarver

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.

Resolution Report Card

Evelyn Herwitz · December 29, 2015 · 2 Comments

As we fast approach 2016, the media are full of retrospectives, best-of lists, worst-of lists, remembrances and clearance sales. The usual accounting.

And, of course, it’s that time of year to consider New Year’s resolutions. But instead of coming up with a new list, I thought I’d review last year’s and see how many resolutions I actually accomplished—and how to move closer to my goals this year.

My top priority for 2015 was to enhance my weekly exercise routine. I took the plunge and joined a community fitness center. But it didn’t work out. The classes mostly consisted of repetitive movements that are hard on my joints, and the studios were as chilly as refrigerators. I could not motivate myself more than maybe three times to go to the gym and use the stationary bike. The one class I really liked cost extra. Not worth the membership. My one big accomplishment: walking 15 minutes to a half-hour around my neighborhood at least three times a week.

My New Year’s remedy: At the recommendation of my cardiologist, I checked out local colleges for indoor tracks, to continue walking warmly and safely this winter. Al is an alumnus of one of them, which gives me spouse privileges at a very reasonable rate for the campus recreation facility. I also found a new Pilates studio nearby with a variety of exercise options that enables me to use a punchcard for drop-in classes, rather than pay for classes I may miss. I have to be more consistent with exercising, to stay strong and flexible, and this seems to be a more realistic formula for success.

Decluttering our home was also high on the list. Well, we got started clearing out books and old toys. Then we stalled. I managed to cull through decades of old files from the filing cabinet in the basement—dating back to the 1980s! But I still have to consolidate what’s left in a manageable way and then transfer current files (sans unnecessary paper) to the filing cabinet from my office floor. Over the winter, I want to finally tackle the family room in the basement. On the plus side, if we hadn’t been decluttering this fall, we never would have discovered a huge plumbing leak, and damage would have been much worse.

Last New Year’s I promised myself I would limit multi-tasking and keep my to-do list to what I could actually accomplish. Let’s just say this is a work in progress. Same for spending undistracted quality time with my family, minus iPhones and other beeping gadgets. Getting better about this, but there’s plenty of room for improvement.

Did I favor locally grown, organic produce when grocery shopping? Not as much as I had intended. Need to work on that one.

Another goal for 2015—saying thank-you to someone for something specific, each day—I try, but could be more mindful about this. I did fulfill some major community volunteer commitments, another resolution, without draining my energy, which I plan to continue.

Then there was my big creative goal: write the first draft of my novel. I haven’t finished, yet, but I am making steady progress. I’m just about at the halfway point, and I participate in a weekly workshop class in Boston that is helping me to sharpen my writing and stay on task. I’ve learned a great deal about how much is involved in an artistic project this big, and I know, now, that it’s a multi-year undertaking. That’s okay. We took an amazing trip to Europe this summer to do research for my novel that taught me I really can travel, despite the complications of my scleroderma. As I wrote last year, investing in my own art is truly central to my being—and well-being.

I need to remind myself of one more goal from last year—go/do/see someplace/something new each month. So important to keep growing.

As for adding anything new for 2016, the best goal I can think of is this: Remember to just breathe.

Best wishes to all of you, Dear Readers, for a healthy, fulfilling and prosperous 2016. Thank you for your continuing encouragement and thoughtful comments as I enter my fifth year of writing this blog. Let 2016 be a year of more progress toward a cure for scleroderma, and toward a just and lasting peace in this troubled world of ours.

Image Credit: Yee Wong

Slip Sliding Away

Evelyn Herwitz · December 1, 2015 · 1 Comment

November disappeared at midnight, slipping out the back door. No snow here yet, but the trees are mostly bare now, except for the oaks that hang onto their shriveled brown leaves well into winter. Temperatures have dropped, and I have to propel myself out of the house for my afternoon walk, bundled in my long down coat and warmest hat. Even wearing insulated gloves, my fingertips burn from the cold.

But walk I must, or I get far too stiff working at my computer much of the day. The fresh air clears my head and the exercise gets my heart pumping and blood circulating. It also helps me to remember what I need to do next.

All of my friends in their sixties joke and commiserate about our less-than-sharp memories. There are the words that won’t come when beckoned, the names that elude recall, the purposeful trips to one room or another—punctuated by the inability to remember why it was necessary to go there in the first place.

It’s reassuring to know I’m not alone in this, but I find it disconcerting, nonetheless. All too often, I’ve been misplacing things—my cell phone, or keys, or a book that I was sure I had in one room that seems to have walked to another all by itself. I’ve left the house, certain that I had everything I needed for the day, only to realize when I’m too far from home that I forgot something. I should use a pill minder to be sure I’ve taken all my meds on schedule, even as I hate to admit I need it.

I don’t know if this is simply due to the natural aging process or the fact that I need more sleep or some combination thereof. Hormonal changes since menopause certainly muddied the waters. I feel like my memory gets worse when the days grow short and it gets too dark, too early—it’s time to hibernate, and I just can’t hold as much information in my head.

I keep a detailed journal, files of correspondence and spread sheets to track my work for my clients. I’d be lost without those records. I maintain similar files for family business and long to-do lists. I have a notebook that I carry with me to all my doctor’s appointments, or I’d never remember our conversations. But I used to be able to manage all the day’s details without writing everything down. No longer.

I also can’t remember all the details of family history the way I once could. I used to have vivid memories of my childhood and our early years with our own children. Now, my younger daughter will mention an event that’s as clear as day to her, but I have to dig deep to picture it. Very frustrating.

I suppose that as the layers of memories accumulate over decades, there’s just that much more to sift through. But I want to be able to remember everything the way I used to. Ironic that I can remember how I used to remember. It’s just the what that’s acquired a mind of its own. I keep wondering if this is just a temporary state of affairs, or if I’ve reached some kind of tipping point that requires acceptance of the inevitable: the older I get, everything just takes longer, including memory recall. At least I have all my journals—a trunkful—to fall back on. And all of my other writing.

As for the immediate challenge of memory lapses, it’s time to develop some new strategies. I’m sure there are plenty of apps to help, although keeping a small notepad with me at all times is probably the best, most obvious, low-tech solution. As long as I can remember where I put my pen.

Image Credit: fabrizio turco

Orange Moon

Evelyn Herwitz · September 1, 2015 · 1 Comment

With August now behind us, signs of fall are everywhere. On recent walks I’ve noticed that our neighbor’s sugar maple is just beginning to shed a few leaves. Nights are cooler. It’s already getting dark by 7:30.

But I’m not quite ready to let go of summer. So it was a gift on Sunday—a beautiful, sunny, warm day—that Al and I made it to one of our favorite beaches on Block Island, just off the Rhode Island coast.

As a child, I loved to swim in the ocean. Our family would vacation on Cape Cod, and I’d always beg to go to Nauset Beach, part of the National Seashore on the Cape’s eastern coast. There I would play in the waves until I turned blue and my teeth chattered. Nothing could stop me from swimming and body surfing.

Decades later, I still love the ocean, but it’s been many years since I could get in the water. Most of the time, it’s simply too cold and not healthy, given my Raynaud’s. But even when the water is warmer (yesterday at Block Island it was 73ºF, pretty comfortable for the Atlantic up here), I can’t risk immersing my finger ulcers in the sea. Too high a chance of infection. One year, when the girls were young, I tried fastening latex gloves around my wrists with duct tape so I could swim, but the water still seeped in.

So I’ve learned to appreciate the ocean in other ways. While Al swam yesterday, I finished reading a novel. We took a long walk up the beach, examining pebbles and rocks, searching for sea glass. I dipped my toes in the water. I took some pictures. I listened to the mesmerizing sound of the waves. And I breathed in the wonderful moist air, which does wonders for my too-dry nose and scarred lungs.

The water is an endless source of fascination, ever changing. Then there are all the birds to watch. One particularly bold—or indifferent—white-and-gray herring gull strutted past me as I read, its yellow eye scanning the sand for leftovers, close enough for me to touch it if I’d dared. (I didn’t.)

As the afternoon shadows grew long, I bundled up in the various layers I’d brought—sweater, sweatshirt, blanket, hat. We left the beach, reluctantly, around 5:30, and walked back into town to find a place to eat dinner. It was still warm enough, away from the shore breeze, to dine outside.

Later, on the ferry back to the mainland, we sat on the top deck and watched the dark shapes of the island’s dunes slip by in the night. Even with the breeze created by the ferry’s forward motion, I was able to stay up top and enjoy the stars. As our boat neared Point Judith, we turned around to see the nearly full moon high over the horizon, casting a glistening shadow across the water. It was huge and orange, the color of summer sunsets and fall harvests.

I couldn’t have asked for a better ending to a great summer.

Raynaud's

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