Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

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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.

Just Living

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rain-1199464-639x425It’s raining today as I write, a chilly, damp, late March Monday. I’m still in layers of sweaters. The heat is on. I’m wearing my spring green wrist warmers to thaw out my fingers and remind myself that warmer weather is on the way. Really.

But this is not what’s preoccupying me this morning. Nor are my latest episodes of living with scleroderma. (Should I write about the odd tic in my left eye? my search for adaptive tools? the challenges of getting dressed?) No. What’s on my mind is just living, right now, right here, wrestling with all that’s at risk around us.

There is the U.S. presidential election, which has me profoundly worried. I have no intent of turning this blog into a political platform for my personal views (or anyone else’s, for that matter). But I have become a political junkie, reading, watching and listening to the best news analysis I can find to stay on top of developments. I also am inexorably drawn to fiction and histories about the rise of demagogues and Fascism. And I am struggling with my own role: What should I be saying, writing, doing in response?

There are other issues that weigh heavily on my mind—not only the proliferation of terrorism, once again making headlines with last week’s attack in Brussels, but the insidious cultural conflicts fueling this evil; the growing disparities between the haves and have-nots of this world and where that will lead as our planet becomes more crowded (which is intrinsically connected to the rise of terrorism); the existential threat of global warming. And, again, I struggle with my response. What will I be able to say, at the end of my life, that I did to help set things right?

I am not one who can easily compartmentalize and shove all this to the back of my mind. In some ways, I envy those who can. I always have to catch myself from spinning in my head about all the what-ifs, whatever is making me feel vulnerable. These days, however, I feel like I’m in a constant state of orange alert. (Obviously, this is not good for my health—physical, mental or spiritual.)

By comparison, my scleroderma and the challenges it presents are just a lot of white noise. I’m confronted by it every minute of every day—how to pick up a cup, handle a pen, turn a key in a lock, put on a sock, brush my teeth. It is frustrating, angering, time-consuming, exhausting, sometimes painful, often a real nuisance. But it is not what concerns me most in my life.

What concerns me are my family, my art, my work, my friends, my community, my country, our planet. What truly preoccupies me is how to live a meaningful life, how to make my small corner of the world a better place. And this is the real point of writing this blog. Living with a chronic disease can absorb a lot of physical, mental and emotional energy—for many good reasons. But it simply is not and cannot be all that we are about. Scleroderma is only a piece of me. It is far from all of me.

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

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

Thumb’s Up

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I’ve been getting clumsier in recent months. I drop all kinds of things—keys, coins, bottle caps, you name it, anything that involves dexterity and a good grip.

hands-1436113-640x480The other day I was cooking and picked up a full bottle of olive oil by the top, not realizing the cap was loose. Unable to hold on (fortunately, the bottle was plastic), I dropped it on the kitchen counter, spilling oil all over my favorite cookbook.

The cookbook is now well stained—not a disaster, once I unstuck the pages, since I consider my spattered cookbooks to be well-loved, like the Velveteen Rabbit. But still, I wish I hadn’t made such a mess.

There’s a good explanation for all of this klutziness: My right thumb (I’m right-handed) has built up layers of dead skin over abnormal thickening. It’s gotten so bad that it’s becoming difficult to hold even a pen or pencil. I’ve been tolerating this as best I can, bandaging it and even applying some urea emulsion cream that I got from my podiatrist to try to loosen the layers so I can remove them.

But none of this has really worked, and I realized this winter, when Al’s employee health insurance coverage improved (thank goodness), that it was time to see my (once again affordable) hand surgeon at Boston Medical and get his assessment. I knew my thumb needed debridement, and I knew I couldn’t possibly do it myself.

It took two months to get in to see him, but I finally had my appointment last week. It’s been years since I last needed his help—once to remove stubborn calcinosis from my left thumb that had adhered to the bone, and another time to remove two surgical pins from my right index finger, left from previous hand surgery to correct a severe flexion contracture, which were causing pain.

Seeing him was well worth the wait. He is the antithesis of the stereotypical surgeon—patient, empathetic, willing to discuss all options at length. He took a look and commented that some of the pain I’m experiencing is probably due to more calcium stuck under all those thick layers of skin—right at the pressure point (why I can’t hold onto stuff).

I mentioned my bad reaction to lidocaine with epinephrine when I had calcium removed from the bridge of my nose last month. “I never use that combination with scleroderma patients,” he said. “The epinephrine causes the blood vessels to constrict.” Who knew? My other doc (and his resident, who gave me the shot) should have. And this is why I love my hand surgeon—he understands this disease really well.

He was not gung-ho about operating, because of all the risks of infection and my poor digital blood circulation that exacerbates healing. But he explained the choice as one of two options: either continue to live with it, as best I can, or solve the problem surgically. “That’s what we’re here for,” he said.

We agreed that I’d come back to see him in May, get a hand X-ray and discuss how to proceed. I could either have the surgery later that week or wait until June, when the weather is warmer (I hope), to boost the healing process. I have to balance my desire to take care of this as soon as possible with the most favorable conditions, including adequate time for my thumb to recover, pacing between family celebrations at the beginning and end of May, and anticipated balmy weather.

Of course, I can only guestimate the latter—the day of my appointment, the mercury hit 77° F, a record-breaking day in Boston for early March.

But at least there is a solution in sight. Meanwhile, I’ll just need to be more mindful when I pick up the olive oil bottle, or my house keys, or spare change from my wallet. And give myself a pass next time I drop something else.

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: Tibor Fazakas

Turtling

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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.

box-turtle-1409099-640x480Maybe 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:

  1. Remove overnight bandages from my fingers and wash my hands and digital ulcers thoroughly.
  2. Wipe away any adhesive residue with baby oil and wash hands again.
  3. Swipe my fingers with an alcohol wipe. I also clean any mushy ulcers with a dab of hydrogen peroxide.
  4. Prepare all my bandages and cut pieces of absorbant calcium algenate silver dressing to size.
  5. 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