Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

finger ulcers

Mending

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My grandmother Elli was an expert seamstress. She learned from her father, a Berlin fashion designer during the 1920s. When she came to visit us in the spring, she would help me make doll clothes. One particularly striking outfit was a black-and-white houndstooth check dress with hand-sewn, red rickrack. My dolls were quite stylish. When I sewed my own senior prom dress, Elli was there to teach me how to insert a prick-stitch zipper. The dress no longer fits, but it still hangs in the back of my closet.

img_2440When Elli died, I inherited her huge, multi-tiered wooden sewing box, which included, among other treasures, tin boxes full of buttons. Over the years, I accumulated my own stash, a source of delight for my daughters as I worked on sewing projects at the dining room table. Buttons would become tiny plates and food, matching and counting games.

The sewing box is battered, now, sitting in our basement family room. But it still contains  wonderful traces of my grandmother—spools of silk thread that must be at least a century old, tiny cardboard tubes wrapped with various dark shades of darning thread for mending socks, black hooks-and-eyes sewn to a card.

I never learned how to darn, and I can no longer sew on buttons by hand without great difficulty—too hard to hold the button in place and manipulate the needle and thread. So I delegate that task. But I like to repair clothes. It’s a way of conserving resources and fighting back against our throw-away economy. I tackle any mending project with my trusty Viking Husqvarna sewing machine, which I purchased about thirty years ago and has never failed me.

The other day, my eldest asked if I could mend a favorite sweater that had gotten snagged, causing a seam to unravel. Ideally, it should have been crocheted back together, but that was out of the question. I wasn’t sure if I could fix it, but I promised her I’d try.

From decades of sewing, especially when my hands were more nimble, I have accumulated a thread collection that rivals the one I inherited from my grandmother. Sure enough, I had the right maroon thread to match the sweater. I pinned the seam back together, carefully unrolling the edges to align without losing any more knit stitches. I set the machine for a narrow zig-zag, to secure the seam without losing stretch. And I slowly stitched away, forcing the knit fabric toward the feed-dog so the seam wouldn’t sag.

I didn’t know if my method worked until I finished the seam—but it did. The inside edge is not as neat as the original, but the outside looks perfectly fine. One sweater saved. A small victory in a world so far removed from Elli’s day, when mending was not only a practical matter of conserving scarce resources, but also an art form.

At a time when so much seems so easily torn asunder, a worthy pursuit.

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.

Exposed

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For a couple of days recently, I was down to one bandaged digital ulcer—my right thumb, still healing from surgery in June. Every few years, especially when there’s been a long hot spell, this happens. I can actually see most of my fingertips, a bandage vacation.

hand-2It’s very nice while it lasts. I can get going in the morning much more quickly—a couple of minutes, instead of the usual 20, to care for my hands. But it feels very strange. The fingers that have been under wraps for months, sometimes for the entire year, are extremely sensitive to touch. My left thumb, in particular, has some nerve damage that becomes much more pronounced when it goes Full Monty. By the end of the day, it’s tingling almost constantly.

Even still, I’m amazed and glad to be able to take a break from the bandages. Careful as I am to keep my hands clean, they get grubby during the day. The bandages shred at the edges and the adhesive attracts dirt. (I only use fabric bandages, which breathe and remain fairly comfortable, despite daily wear and tear.) Plus, I can’t sense exactly what I’m touching. This is the most frustrating part.

But walking around with almost bare hands can have some unexpected consequences. On one of the days when my fingers were exposed, I bought some groceries. The young cashier asked with genuine sympathy, “What happened to your hands?” I gave my standard reply about ulcers (sometimes, it’s just too much to explain about scleroderma) and went on my way. Only later did I realize that she wasn’t inquiring about all the bandages—there was just one. She was commenting on my oddly stunted fingers, misshapen by resorption of bones in my fingertips. Usually, no one can see, because of all the dressings.

Scleroderma causes a myriad of hand distortions. The oddest visual aspect of the disease, in my case, is that I barely have any fingernails left. This is actually what the cashier was asking about—it looks as if the tips of my fingers have been chopped off.

A missed opportunity for a teachable moment about this disease, certainly. At the same time, however, talking about a personal, physical disability with a casual stranger is murky territory.

My hands are strikingly different. I’ve had this disease for so many decades that I don’t really blame someone from wondering about them. The cashier was not ridiculing me. She was concerned, merely articulating what most people who meet me for the first time may be thinking.

However, I also don’t always feel like having to explain why my hands look strange. My hands are my hands, they are the only hands I have, and they serve me well, despite all the struggles inherent to this disease. They are certainly a distinctive feature. Enough said.

All of this will be a moot point, soon. The weather changed over the weekend from sultry heat to cool breezes by Sunday evening. I’m back to three bandages, and as it gets colder, I’ll have more. My stubby fingertips (the middle fingers on both hands are the most damaged) will hide under wraps again for the better part of the year. Time to find my gloves and pull out the sweaters.

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.

New Tricks

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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.

Outlier

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photoI am typing with three fingers on my right hand—middle, ring and pinky—and three on my left—ring, pinky and thumb. Usually, I use my right thumb as well. I actually had to stop and take attendance to figure this out just now, as I’m so used to compensating for digital ulcers that I automatically adjust how I type to which fingers are most healthy.

But my right thumb is out of commission for a few weeks, and my right ring finger, while occasionally useful at the moment, is also in need of a rest. Last Thursday, I finally had hand surgery to remove excess calcium deposits from both fingers that were interfering with my grip. Overall, I think it went well. I’ll know for certain next week, when I’ve healed more and the sutures are removed. I’m glad it’s over. I don’t want to repeat the experience any time soon.

The actual procedure went smoothly enough (despite our arriving nearly a half-hour late to the hospital’s ambulatory surgical suite, due to excessive rush hour traffic, which did not help my anxiety level that morning). Everyone was pleasant, informative and reassuring as they prepped me for surgery. I was glad to see my hand surgeon, who chatted with me as he marked my fingers with a purple felt tipped pen (“Yes” with an arrow pointing to the incision spot on each digit).

But there is a routine, auto-pilot aspect to the process that’s easy to succumb to (they must know what they’re doing, right?). Being assigned the role of patient—stripped down to a johnny and rubber grip socks, lying on a gurney, with your hair in a paper surgical cap and your glasses taken away—renders you more compliant. And vulnerable. In retrospect, I realize, from many years of dealing with the medical profession, regardless of setting or situation—I needed to be more assertive.

The IV nurse’s first attempt to insert a cannula in the back of my left hand was doomed to failure. I had warned her of my small, rolling veins—far too many experiences with IV antibiotics in past decades have rendered them hard to tap. But I didn’t think to stop her from trying, which I should have, because it really hurt and it didn’t work. Per normal, whenever I have blood drawn, the vein in the crook of my left arm was the right spot.

Next, the anesthesiologist came in to speak with me and asked me a bunch of questions about prior surgical experiences and my recent echocardiogram. But when I proceeded to give him a more detailed summary of the report, he dismissed me with the fact that he’d read it already (I certainly hope so, but then why ask the question?). At least he seemed to hear me when I said it takes me a very long time to metabolize anesthesia of any kind. “We’ll go on the lighter side,” he assured me.

The anesthesiology nurse was a bit more approachable and reassuring as he began the light sedative cocktail infusion that would help me relax during the procedure. As he pushed me into the OR, I was already starting to sink into a featherbed of valium. This was a good thing, and the addition of fentanyl made me quite comfortable (as comfortable as you can feel, under an extra layer of blankets because the OR is so cold—to keep the surgeons from overheating under all their gear, according to the anesthesiology nurse—when your head is being covered with a blue paper surgical drape and your hand that you can no longer see is being placed in some kind of protective sleeve and doused in chilly disinfectant). There was rock music playing—nothing I recognized, but good music, all the same.

Then came the local shots, which hurt like hell for far too many seconds—one in the fat pad beneath my thumb and the other, beneath my ring finger. The anesthesiology nurse was kind and comforting, standing by my left ear. Soon I felt nothing in my hand except odd pressure. One of the surgical team hummed to the music. I alternately closed my eyes and stared up at the surgical drape, which was perforated in the shape of tiny stars, as the team scraped out intractable globs of calcium, surrounded, my surgeon explained, by some abnormal cells that were essentially trying to encase the crud—like a tree closes off a wound. No wonder the stuff wouldn’t come out on its own.

Samples were sent off to pathology, and I was wheeled back to my berth. The whole procedure took about a half hour. Al was surprised to see me sitting up and drinking ginger ale when he was called back to my side. I was glad he was there.

I had hoped to see my surgeon again before leaving, but he was busy with other patients. His resident came by, instead. And here is where, once again, I found myself struggling to get my points across. I am allergic to oxycodone (Percoset). If I need a heavier pain killer, I take hydrocodone, the active ingredient in Vicodin. I thought I had some at home from a prior surgery, but didn’t recall. But he would not write the prescription. It wasn’t in their protocol. I don’t know if this is a reaction to the tighter restrictions on opiodes, but it made no sense. He wouldn’t budge.

In addition, I asked for a prescription of my most effective antibiotic. I had discussed this with my surgeon, who agreed it would be a “good idea” to start it when I got home as a preventive measure, given my propensity for infections. I had some left over from a previous infection, but not a full bottle. The resident informed me that research has shown antibiotics as a prophylactic neither help nor hurt, so he wouldn’t write the scrip.

“If it makes you sleep better at night, you can take what you have,” he said. In essence, he was telling me I was taking a placebo. I was really frustrated, but I was also exhausted and just wanted to go home. So I didn’t insist on seeing my surgeon and dropped it, knowing I could call my other docs and take care of it. The resident confidently told me that I would have minimal discomfort from the procedure and left.

As it turned out, it was a good thing I had some Vicodin that had not expired on hand. It took 18 hours for the local anesthesia to work its way out of my body—I could not assess the pain level before I went to bed that night, except for a glimmer of a warning of a problem in my thumb. I started the antibiotics and took one Vicodin before going to sleep.

By 5:00 a.m., I awoke with significant pain in my thumb. On a scale of 1 to 10, it was a 7. A second Vicodin didn’t really make much difference, because the pain train had already left the station. It took the entire day of alternating Tylenol and Ibuprofin, plus distracting myself, to get it fully under control without making myself too queasy from more Vicodin, even as the initial doses were essential to the whole mix. Al stayed home with me again, taking another day off from work, because I was so uncomfortable from the pain and woozy that I was afraid of falling. I missed the follow-up call from the hospital and decided not to return it. What were they going to tell me that I didn’t already know, better?

By Saturday, I was up and about, and a couple of days later, I’m back to almost normal, just managing the wounds. In a few weeks, I hope my right hand will be more functional. I’ve written this long entry, which is good progress.

But my experience reminds me that I have to be assertive, whatever medical setting I find myself in. There are times to listen and learn, and times to speak up and educate. Scleroderma does not fit neatly into a protocol. I am an outlier on the bell curve. The sooner those who seek to attend to my medical needs understand this, the better we’ll all be.

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