Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

hands

New Tricks

· · 1 Comment

mr-fluffy-1358436-639x426In our back yard, a supposedly squirrel-proof bird feeder hangs on the trunk of a Norway maple. For the past year-and-a-half, it has confounded the squirrels. They’ve climbed all around it, certain it contains something good to eat. All that spilled seed near the tree’s roots must mean those birds are onto something, right? There just has to be a way to get some, too!

Then, last week, one wily squirrel finally cracked the code. Hanging down over the roof of the feeder, it managed to push down on the spring-loaded perch, swing around, climb up and sit on the ledge of the seed tray. There it curled its bushy gray tail into a question mark—You gotta problem with that?—and gobbled up black sunflower seeds.

I stepped outside to shoo it away, but in a short while, the squirrel was trying once again to remember the combination of acrobatic moves that had been so rewarding. No luck, at first. Next morning, I looked out the window and discovered it happily munching away again at the feeder.

At first, I was annoyed. But I was also impressed. That was one smart squirrel! Clearly, it was capable of learning from trial and error to get the reward—just like a lab rat learning how to push the right levers to get sugar water.

Since then, however, I haven’t noticed the wily squirrel at the feeder (which doesn’t mean it hasn’t been there). Birds continue to visit, so at least I know there’s still plenty of seed left.

Meanwhile, I’ve been learning some new tricks of my own, out of necessity, since my hand surgery a couple of weeks ago.

For years, I’ve been cutting bandages in half, the long way, for dressing my digital ulcers. I lap and contour them over my finger tips, then secure them in place with a full bandage wrapped around the finger. And I’ve always used a pair of cuticle scissors to cut the bandages. They’re small and sharp and light to handle.

But with my right hand out of commission for well over a week, I needed to recruit some help. My left hand just isn’t as coordinated, and I couldn’t cut the bandages. So I asked Al to do it for me. Another time, when he was at work, I asked Emily, who is home for the summer, for assistance.

Both followed my instructions—but both also inspired shortcuts that I had never considered. Al devised an easier way to cut the bandages—just shy of the peel-open end—so you can peel the wrapper and release both halves at the same time, instead of having to peel each half bandage separately.

Both Al and Em asked me why I insisted on using the cuticle scissors. I had to admit, they don’t cut a straight line very easily and can get stuck in the adhesive. Also, I realized, the reason I can’t use them right now is the holes in the handle are too small and press against my thumb sutures. So I fished out a spare pare of rubber-handled kitchen sheers from the junk drawer and tried them out. Voila! Easy, painless and quick way to cut my bandages in a snap, even with my healing right hand.

Which brings me back to the wily squirrel.

It’s so easy to get stuck in one way of doing things, even when the approach really is not working all that well. You can keep on looking at a problem the same way, circle round and round, trudge along. Or you can stand on your head and open your mind to a new perspective. Even if you’re not an acrobat—or a squirrel—the view is worth the effort.

Image Credit: Piotr Ciuchta

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

· · 2 Comments

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

Just Living

· · 1 Comment

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

· · 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.

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

· · Leave a Comment

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