Vacation Override

It’s been a very busy few weeks since the beginning of July. Al and I leave soon for our first-ever trip to Italy, and to prepare, I’ve been drilling through a month’s work of client projects in 10 days. Usually I pace myself very carefully and keep most evenings and weekends free of work—to manage my energy and keep a good work-life balance. But freelancers don’t get paid vacations, so late hours were necessary to make sure I met my clients’ needs and our family budget for the rest of July.

pills-1417417-639x462Now it’s done, and I have to concentrate on final trip preparations. (It’s probably been good to have had so much work to do—a distraction from inevitable nervousness about how I’ll hold up during a long haul trip.) Tops on the priority list is making sure I have enough of my prescription medication to last the journey.

Only one problem: the timing of my most recent refills works out to being a few pills short for when we’re out of the country. Three prescriptions were affected. So last Friday, I went to my pharmacy and asked what to do. They advised me to call my health plan’s pharmacy and ask about a vacation override. Since we would be abroad, there was a good chance I could get the refills authorized.

Monday morning I called CVS Caremark and explained the situation. The helpful person on the other end of the line told me to submit the refills at the pharmacy, which would be rejected as a premature request, and then have the pharmacy call them for the override, which, fortunately, our plan covers. So after I finally finished all my work, I went down to my local CVS on Monday afternoon.

And here’s where the situation got complicated. Two of the three scrips got through the process without a hitch. But a third hit a snag. For whatever reason, the insurer suddenly decided I needed a prior authorization for this particular medication, not only to get the vacation override, but also to get any refill for a med I’ve had authorized for years. It made absolutely no sense.

But this is how health insurance works these days.

So back home I went and wrote an email to my BMC rheumatologist’s nurse who handles refills and rescued me from yet another refill emergency last week—when I tried to refill an essential medication, I was suddenly told that I was correct that refills remained on the scrip, but, unbeknownst to me, despite checking last month, the scrip had expired. Unbelievable. She worked her magic and the prescription was on its way from a specialty pharmacy that afternoon. It arrived on time on Saturday.

No way to know if we’ll be able to get through the prior authorization process for this med before we leave, but if anyone can make it happen, she can. And if it takes longer than I can wait, I’ll just have to skip a few doses every other day at the end of the trip. Certainly not ideal, but not life threatening, either. Fortunately. This is a pill that helps my hand circulation, but we’ll be in a warm climate, anyway.

Time to get packing. I’ll be taking a vacation from this blog for a few weeks, too. I wish you, Dear Reader, a lovely, restful deep summer (north of the equator—to those of you down under, I hope your winter isn’t harsh). Be well.

Image Credit: Cathy Kaplan

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.

Declaration of Independence

thomas-jefferson-2-1421207-639x601Now that the fireworks are over and the grills are stilled, school is out and vacations are in, I want to pause for a few minutes to consider the word at the center of all our July 4th festivities: independence.

Not the politically-charged nuances—that’s for another kind of blog. Rather, I’ve been thinking lately about what it means to be independent as an individual living with a disease that challenges your ability to do for yourself—and whether that really matters as much as it seems.

Independence is certainly central to our nation’s psyche. Our country was born by breaking away from colonial rule under a tyrannical king. The rugged individualist, the cowboy, the inventor, the explorer—these were America’s formative heroes.

Today the self-made entrepreneur, the start-up genius who becomes a multimillionaire is idolized. Star athletes, whose success depend on teammates, are singled out and lauded for exceptional skill; they may credit the team, but their own names become national brands. The mark of adulthood in our culture is making it “on your own.”

But what does that really mean? I’m as driven as the next American to be self-sufficient, to support myself and those I love, to get around on my own in my car, to manage my finances and run my own business.

And yet, none of that would be possible without many, many interconnected relationships with others. There is not one thing that I do all day that does not depend on some form of collaboration—from staying safe on the highway because others around me obey (mostly) the rules of the road, to taking my daily doses of medication because I’ve received good advice from my team of physicians and I can afford the drugs with my husband’s employee health insurance.

Unless you’re a survivalist or a hermit, being independent is really all about holding up your end of the bargain with all the other members of your family, friendship circle, community, nation—and, most broadly, the planet.

It does not mean doing everything yourself, without any help. It doesn’t mean not asking for help when you need it. Indeed, asking for help, which can make you feel childlike or weak or less-than in a culture that so prides itself on the appearance of self-sufficiency, is often an act of courage.

Here is how I think about independence, after more than three decades of living with scleroderma: It mean doing the best you can, within the breadth and limits of your own capabilities, while recognizing—no, honoring—your interdependent connections in the web of life. It means helping others when they need the support that only you can provide. It means standing up for yourself when you need to speak up—and speak out—to set things right, for yourself and others.

Our nation turned 240 years old on Monday. In these tumultuous times, each and every one of us is needed, each has something to offer for the greater good of all. The next time you know you must ask for help, go ahead—there will be more than enough opportunities to extend a hand in return.

Image Credit: Thad Zajdowicz

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.

Handy

When you live in a home long enough, stuff breaks. A doorknob loosens, a faucet drips, a burner element wears out on the stove, a toilet leaks, a chair leg cracks, a lock fails. The list is endless.

tools-1553469-640x480If you’re handy, fixing stuff around the house can be a satisfying hobby. If you’re not, it’s a cumulative nuisance. And if you can figure out how to fix it but your hands won’t cooperate, it’s truly irritating.

I used to have extraordinary fine motor coordination in my hands and could do just about any kind of detailed manipulations. I watched my father fix all kinds of objects around the house and build bookcases to hold thousands of tomes, and I imagined being able to do the same someday. But now that I have my own home, I can’t do the kinds of repairs that I wish I could because my hands simply won’t cooperate. Al, by his own admission, is not Mr. Fix-It.

So it was with great satisfaction that we finally found a handyman who can do just about any repair for a reasonable price. Our list has been growing for a long time, but the problem that finally drove us to seek him out was the ladder to the attic, which broke about a year ago, making it impossible to access our luggage. We are planning more travel in a few weeks, this time to Italy, and we needed to get up there.

And so, over the past few days, Marc has been fixing stuff: He replaced the ladder, fixed the impossible leaking toilet, repaired the drippy kitchen faucet and spray hose, reattached the spring on the outer front door that fell off the other day, wired a new front light, replaced some shakes that had been bored through by woodpeckers, and mended two broken chairs and the leg on our coffee table.

As these things go, nothing was as simple as it seemed. Bees were investigating the holes bored by the woodpeckers. The toilet needed several adjustments, as did the kitchen faucet. The attic ladder was a challenge because the original door had been built in the wrong place relative to the upstairs hallway and staircase. But Marc figured it out, spicing his efforts with some colorful language that reminded me of my dad’s cursing when things didn’t go right, and demonstrated an admirable ability to sort through the challenges and solve each one.

While he was working here on Monday, I was faced with a different kind of fix-it problem—trying to get the scanner on my printer to work again. I had an important document to scan, and the printer would create the image, but continually refused to save the file. I tried reinstalling the driver twice, only to have the same result. I groused to Marc, who cracked a sympathetic joke.

I was ready to give up and take the document to an office service store, when I took a break for a late lunch. Marc was up in the attic, adjusting the length of the new aluminum ladder after a particularly difficult battle with the old wooden one, which had twisted and tangled in its ancient spring. If he could persist and figure it out, so could I.

So I read through old printer documentation, tried a different way of getting into the scanner software, and—lo and behold, found the problem—a save option that had not been activated. The scanner worked. “I did it!” I shouted to Marc. He cheered.

I may not be able to do what Marc does with fixing stuff with my hands, but I sure learned a good lesson about persistent problem-solving. When he left Monday afternoon, he told me to start making “another little list.” I already have a few items noted down for after we get back.

Image Credit: Ciska Wesselius

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

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

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.

Come Sail Away

Last Tuesday, I was living on a boat. A sailing yacht, to be specific, harbored in a marina in Oakland, California. We were on the West Coast this past Memorial Day weekend for my niece’s wedding, and Al and I had extended our stay by a few days to do some touring.

We found the boat through Air B&B, which has become my favorite resource for traveling. Forget hotels. You can find some really special places, save money and meet really interesting people.

IMG_0561For the first three days of our trip, we stayed in a lovely apartment in Oakland, not far from Jack London Square, a convenient BART stop and the ferry to San Francisco. That was a perfect location for getting to the wonderful wedding, which took place amidst a cathedral-like grove of redwoods at the UC Berkley Botanical Garden, Saturday night.

The next day, Al and I moved on to the sailboat, which had been lovingly restored by our host. A British expat, he had lived all around the world, ended up in Oakland by a series of events that started with not being able to bring a puppy back to England without quarantining his pet for six months, and eventually bought the boat from another sailor who had intended to take it on a worldwide journey, but had given up his dream when his marriage fell apart.

Our host showed us the before and after pictures—from a nicotine-stained, trash-filled (literally—tons of trash) hulk, he had transformed it to its current pristine state. The living quarters (I’m sure there’s a sailing term for it that I don’t know) are finished with teak. The sails are made of classic, brick-colored canvas.

The marina was very calm, and our floating home rocked gently. Al never noticed it, though I continued to feel the boat’s movement even when we were on dry land. But it didn’t bother me (contrary to my experience with whale watching back in April).

What struck me most about the boat, however, was how it forces you to be mindful—of space, of water use, of storage. Close quarters required me to step carefully. Once I learned the ship’s contours (and banged my shin a couple of times), I could get around and up and down the ladder to the deck quite easily.

I figured out all the wooden latches for the closets and the trick to opening the bureau drawers (all this was built into the walls), which, to my amazement, did not fight my fingers. I even learned how to take a hand-held shower in the little bathroom. And all three nights, we slept soundly in the cozy bed built into the cabin at the boat’s bow.

But the best part of our stay was the morning we chartered our floating home for a sail around the Bay with our host and a mate. Our host is a very experienced sailor, as well as a great conversationalist, and he was more than happy to answer all of my questions about the art of sailing, in-between raising and lowering the sails, tacking, coming about, and skillfully avoiding other boats whose pilots knew less about rules of the waterways.

As we neared the island of Alcatraz, the wind was stiff and the water quite choppy. But even as we got splashed, sailing at nearly a 45 degree angle, it was a treat. There is something magical about being powered only by the wind, gliding past a sea lion bobbing in the water as pelicans sail overhead.

Our host let us off at one of the piers along San Francisco’s waterfront, and we went on our way, exploring the city. When we returned to our sailboat later that evening, I felt like I was coming home to an old friend.

We were sorry to leave. The one consolation was our plan for July, when we venture to Italy for the first time. No boats for lodgings, but so long as we both stay healthy enough to travel, we’re ready for more adventures. Once the travel bug bites, there’s no turning back.

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.

Eyes of the Beholder

For those of us with scleroderma, especially women, beauty is a touchy subject. In so many ways, our bodies transform against our will, and whatever beauty (whatever that really means) we may once have had slips through the tips of our clawed fingers and the pores of our too-tight faces. It takes courage to face the world, some days. Other days, wrapped in multiple layers against the cold, one can easily feel invisible.

How I understand my own beauty continues to evolve. Over decades, I’ve come to feel more comfortable in my own skin, tight as it may be around my mouth and over my nose, odd as my stubby, bent fingers may look. At least, most of the time. I cannot describe my face as beautiful in the traditional sense, but it is my uniqueness, and that, I treasure.

Each of us needs to make peace with who we are and how we appear to the world, in our own time, in our own way. I have no magic formula. Saying beauty comes from within is much too glib. Living with scleroderma is a daily challenge of will and determined self-confidence in response to intense social pressures to look young and sexy in our society.

This Monday, I found a surprising opportunity to think about beauty in a different way. I was in Manhattan for a business meeting that ended an hour earlier than expected, just enough time to squeeze in a quick visit to the Cooper Hewitt Smithsonian Design Museum, which is featuring Beauty—Cooper Hewitt Design Triennial. Although the exhibit of international designs focuses on aesthetics in everything from fashion to typography, the introductory text gave me pause. Here’s an excerpt:

Beauty varies among individuals and cultures. Strange or damaged forms transgress the norms of beauty, pushing viewers to expand their expectations by encountering forms that are odd, uncanny, or outlandish.

Yes. We do, all of us with scleroderma, transgress the norms of beauty. We push the envelope, forcing others to expand their expectations of what is beautiful, confronting the world around us in our odd, uncanny bodies. Let us revel in that.

Here are some of are my favorite pieces of unexpected beauty from my all-too-quick visit to the Cooper Hewitt. Enjoy.

Cooper Hewitt 1

Nail Designs, Tsumabeni, 2016

 

cooper hewitt 2

Dress by Sanne van Winden, Suzanne van der Aa and Michiel Schuurman, manufactured by Vlisco, 2015.

 

cooper hewitt 4

Fashion designer Thom Browne Selects: Exploration of reflections and individuality; mirrors and frames from the Museum’s collection

 

cooper hewitt 5

Necklace (2010), Eucalyptus Brooch (2013), Ring (2013) and Honey Bee Earrings (2014) by Gebrüder Hemmerle

 

cooper hewitt 3

Wall Hanging, “Goliath,” designed by Hezichoo Textiles, 2015

 

cooper hewitt 6

Tapestry, “Nightless Nights,” designed by Kustaa Saksi, 2015

 

wallpaper eh

My own “wallpaper” created with digital pen in the Immersion Room

 

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

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

Forward

The maples on our street have finally shed their chartreuse flowers, unfurling palmate leaves, catching raindrops all last week. After too many days of dreary chill, the view is lime green. It finally feels like spring has arrived—dare I say—for real this time.

Violets sprinkle our grass. This seasonal reawakening is a favorite of mine, a time of new promise, fresh beginnings.

IMG_0500 (1)Emily graduated with her master’s in higher education last Thursday. Her goal: working in university disability services, helping college students with physical, emotional and learning challenges to succeed in their academic careers.

Her preparation has been far-reaching, a rich combination of academics and hands-on experience that began while she was still an undergraduate, touching on many aspects of student activities. This past year, among other involvements, she coached college students who were trying to overcome all kinds of obstacles to academic success.

Em has taken inspiration for her career goal from many sources and experiences—but one wellspring has been watching me deal with my scleroderma. We’ve had long conversations about this over the years (she has never known me without damaged hands), and she’s had a front row seat for my struggles and quest for creative adaptations. If ever there was a silver lining for my disease, Em’s career goal is certainly that and more.

Another part of her goal: to help build inclusive communities on college campuses that reject the social stigma of mental health issues and physical impairments. This is not an easy task. She began this effort as an undergraduate, and now it is, for her, a foundational aspiration.

Why higher education? Because colleges and universities are places where many young adults start to make choices of their own and define their values. The college years are a time to explore ideas and choose new personal directions. The university, at its best, creates an environment where conversations about important societal issues—such as how we treat others who are different from us—have significant potential to shape social attitudes in the future.

Idealistic? Absolutely. I wouldn’t want her to be any other way—even as disappointments down the road are inevitable. We can never make progress toward a world where people are accepted for all that they are, rather than rejected for all that they are not, without idealists like my 24-year-old daughter.

With Emily’s graduation, we no longer have any children in school. Both of our daughters have chosen the helping professions, tackling tough societal issues in an effort to make the world a better place. Dark as the future can seem these days, with so much at stake politically, environmentally, socially—here and around the globe—I am inspired by their commitments.

This Mother’s Day, I could not have asked for a better gift.

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.

Sounds of Silence

I should be over my rotten cold by now. It’s been more than a week, for crying out loud! For those of you who read last week’s entry, I’m happy to report that my childhood friend was happy to get together for a rare Boston visit, despite my emerging symptoms. But by Thursday, I tanked. Not only was I sneezing and coughing. I lost my voice.

The timing couldn’t have been worse. We had a big weekend, celebrating one of my brother-in-law’s 70th birthday, with family visiting from all over the country. And I wanted to be there, and I could not just sit there. So I whispered and croaked through conversations. We hosted my other brother-in-law and one of his daughters as house guests, and both Mindi and Emily were home, too. It was great. Except I really shouldn’t have been using my voice, and I probably set myself back several days.

So now I’m doing my best to keep silent. This is not easy for a woman who is very verbal. On the one hand, it’s been a blessing to have a quiet house to work in so far this week. I can express myself via email and text messages and writing for clients, as well as through my own creative writing.

On the other hand, I can’t talk on the phone with anyone or conduct a meeting or get together with a friend or have a simple conversation with Al. Every time I speak, he tells me (with more than a hint of pleasure) that I need to rest my voice. He’s right, of course. There is no way to heal laryngitis other than silence. Even whispering is damaging (as Emily informed me via an article from Scientific American).

So over dinner Monday night, I wrote Al notes on a yellow pad and he spoke in response. Interesting way to communicate—totally different rhythm. At least I didn’t have to repeat myself. I wish I knew sign language.

I’m experiencing silence at another level, as well, because my left ear is blocked up. Even as my sinuses are finally clearing, my ear is not, yet. So external sounds like music on the radio are a bit muffled, although certain soft noises are quite clear (a dripping faucet, crinkling paper). And eating or brushing my teeth is amplified—as well as my tinitus. The ringing is really loud.

Scleroderma adds a layer of complexity, of course. Since I have Sjogren’s syndrome, I have to think very carefully about how to use decongestants, trading off the boomerang risks of nasal sprays with the discomfort of making dry mouth worse at night. Too much oral decongestant sets off my Raynaud’s. Adhesive nasal strips at night help my breathing but can irritate the delicate skin on my nose. Most of all, I need to do whatever is necessary to get a good night’s sleep. On and on it goes. Hard to be patient.

Fortunately (I certainly hope), my voice and hearing loss are transitory. But it surely makes me appreciate the challenges that those who live with permanent speech or hearing impairments have to deal with every day. I’m also very grateful to be able to work for myself at home and not lose income because I can’t report to an office setting when I feel this way.

Okay, enough complaining. Thanks for listening, Dear Reader, and may you avoid a rotten spring cold of your own. Be well.

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: David Di Biase