Mind

Thumb’s Up

Evelyn Herwitz · March 15, 2016 · 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.

The 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

Evelyn Herwitz · March 8, 2016 · Leave a Comment

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Image Credit: Bill Sarver

Election Season Survival Kit

Evelyn Herwitz · March 1, 2016 · Leave a Comment

Today is Super Tuesday, and here in Massachusetts I’m headed to the polls to cast my ballot in the Presidential Primary. I’ve become a political junkie this election season. So much hangs in the balance for our country.

I do my best to keep on top of political news and analysis, but being a responsible citizen is also raising my blood pressure and keeping me awake at night. This is not good for anyone, whether you have scleroderma or not.

So I’ve discovered a few antidotes to election season stress, which I share with you, Dear Reader, in the hopes that we all can keep our sanity while doing our civic duty, staying informed and voting:

Get the facts. Forget the misinformation, innuendo, insults, lies, Twitter rants and Facebook memes that have characterized this race so far. Find a reliable source of balanced reporting that goes beyond hyperventilating pundits and hysterical headlines. I recently discovered Nate Silver’s 538 website, which provides insightful, nuanced election analysis through a careful examination of polling data. It’s solid reporting. Reading their posts each morning helps me breathe and stay focused.
Exercise. There is nothing like a walk in fresh air to clear my head of election season angst—that, and my Pilates class, or walking the indoor track and riding the bike at the gym. I can’t recommend it highly enough, whatever your favorite form of exercise. Just do it.
Listen to great music. When I feel like I’m getting too wound up or depressed about the latest outrageous political headline, I immerse in wonderful music. Here’s one of my favorites, Gershwin’s Cuban Overture, performed by Lorin Maazel and the Cleveland Symphony (click on the link if you can’t see the embedded video):
Watch Fred Astaire dance with Ginger Rogers. Simply the best, guaranteed to make you smile, regardless of what’s weighing on your mind, political or otherwise. Here’s a number from their 1936 classic, Swing Time, a great tap dance to “Start All Over Again” (again, just click on the link if you can’t see the video here):
Look for the good in others. Despite all the darkness and truly depressing news we hear every day, and all of the candidates’ dire predictions about the future if we don’t heed their warnings, there are still good people out there doing good things. Keep perspective with a dose of positive stories from sites like David Freudberg’s Humankind.

None of this is to say we shouldn’t take this presidential election seriously. This is certainly the most important presidential race of my lifetime, one that will define the direction of this country for years to come. It’s never been more crucial to be an informed citizen and participate in the electoral process.

But it’s also essential not to get swept up in all the Sturm und Drang—especially when you’re managing a chronic disease like scleroderma that’s exacerbated by stress.

Hope this helps. And God bless America. Please.

Image Credit: DonkeyHotey via Flickr Creative Commons

Mouse Wars II: The Empire Strikes Back

Evelyn Herwitz · February 23, 2016 · Leave a Comment

It’s been a month since we first confronted a mice invasion in our home—during a bright full moon. Well, the moon is full again, and the problem we thought we’d solved weeks ago turns out to be a lot more intransigent than I had hoped.

I hate the idea of killing mice. It’s not in my nature. We never had an issue while our dear old Golden Retriever, Ginger, was alive. But Ginger died just over a year ago, and it seems that the mice are having a veritable field day somewhere inside the walls or under the floorboards of our house.

This all started when we were careless enough to leave a bag of birdseed unattended in our garage. Mice discovered it and took it as an invitation to settle in. When I finally sealed off the bag in a plastic bin, they sought refuge inside our warm and cozy home. Under a full moon, they began zipping all over our first floor.

Given that I have scleroderma and am very susceptible to infection, we decided to set traps and stop the invasion. We caught a half dozen mice. Things settled down, and I thought the mice had moved on.

No such luck. When the temperatures dropped a couple of weekends ago to -19º F, all of a sudden we discovered that we were not alone. A mouse popped up in Emily’s room while she was home visiting, to her alarm. We set a trap. No takers.

I set a couple more traps. Nothing. But the mice were leaving their calling cards all over the place—behind the kitchen garbage can, in back of a pile of books near Al’s armchair, in the upstairs bathroom, you name it. One recent morning, Al found a foil-covered peppermint patty that had been dragged from the kitchen table to the floor, the wrapper nibbled to shreds and part of the chocolate chomped away. I’ve got to hand it to them—they know the meaning of teamwork.

Last Friday I went to the hardware store and bought some bait traps. But I didn’t have the heart to set them. Maybe the mice would go away! Maybe they’d realize there really wasn’t any food lying around (no more peppermint patties, for certain) and it was time to move on!

Then I walked into the kitchen Saturday night and saw a mouse darting from the top of the computer cable box (no doubt warming itself). On Sunday, I was working at the kitchen table, too absorbed in writing my novel to get up and check out the slight rustling noise in the dining room. Later, we found a couple of calling cards on the dining room table. Ugh.

So, Monday morning I finally called the pest control professionals. Here’s what I learned: The reason we didn’t catch any more mice had nothing to do with how many mice were left. Mice are smart and they’d figured out that the traps were deadly. And the fact that we’ve found mouse droppings upstairs and down means we have a big problem on our hands.

A mouse expert is coming first thing Friday morning to do an inspection, set the bait and close off any small mouse holes. I wish we didn’t have to go this route, but from the research I’ve done, there really isn’t an alternative when it gets to this point. A mouse’s gestation period is about 20 days. We’ve gone through a few cycles, easily, since all this started, for who knows how many females.

Mice have been on this planet as long as humans. They will probably outlast us, in the end. They make cute pets. They have helped scientists discover much about animal and human behavior. They are entertaining characters in children’s books and cartoons. But they are not welcome to colonize our home.

Here’s hoping, next full moon, I’ll have nothing more to report. May the Force be with us.

Image Credit: ChIandra4U

Gym Date

Evelyn Herwitz · February 16, 2016 · 1 Comment

Last time I saw my cardiologist, he made the brilliant suggestion that I try to find an indoor track at a local college, so I can keep up my walking practice when the weather gets too cold. I need the aerobic exercise to build up my endurance and stay strong. His idea was a very good one, especially given the past few days, when the temperature here one morning dropped to -16° F —without the windchill.

As it turns out, there just so happens to be a local college five minutes from our home, where Al earned his master’s many moons ago. So that makes him an alumnus and me a spouse of an alumnus, which gives us access to their wonderful recreation facility—including an indoor track. We also get alumni pricing, which is about a third of the cost of the community gym I had joined last year (and barely used).

So, a couple of weeks ago, Al and I went over to the college on a Thursday night for a tour of the facilities. Now, I’ve read about undergraduate institutions building great health and fitness spaces to attract students. This place is no exception. It’s clean, well-equipped, well-lit, with plenty of exercise options, a beautiful indoor pool and an elevated indoor track that encircles the gym. The track is made of some kind of rubber, so it’s easy on your feet. And we get to use the faculty/staff locker rooms. (Given how long it takes me just to tie on my sneakers, this is a good thing.)

We have since joined and made it to the gym three times together, with Thursday being our date night. Al and I both do the track, though he combines running and walking. I also ride one of the stationary bikes. Al is experimenting with the exercise equipment, weights and swimming laps.

I was a bit wary, at first, of being around all those healthy young undergrads. We certainly stand out, with our 60+ physiques and graying hair, amidst all the cute girls with their perfect thighs and bouncing ponytails, and the cute guys with their flat stomachs and strong shoulders. But the front desk staff have been very polite and welcoming, and no one really pays us much mind. We’re just part of the mix.

That’s fine with me. Actually, I find the youthful vibe invigorating. It’s fun to watch the baseball team as they practice hitting balls against wall mats down in the gym as I walk my laps, or the Frisbee team tossing and catching, or whoever else has the space reserved. I draw energy from the young adults who zoom past me or race on the treadmills in the room with all the stationary bikes. And it’s fun to wave to Al as he speed walks or jogs around me.

We both feel better. And it sure beats feeling trapped inside in sub-zero temps. I still hope to keep walking outside when weather permits. I’ve also found a great Pilates studio for full body workouts once a week. But it’s nice to have a good gym buddy, too—especially when he’s your honey.

Image Credit: Thom W

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