Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

mindfulness

Thumb’s Up

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

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

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

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

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

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

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

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

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

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

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

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

Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com.

Image Credit: Tibor Fazakas

Turtling

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

box-turtle-1409099-640x480Maybe it’s the tease of spring in the air, or the fact that I’m so ready for longer days and shorter nights (at least Daylight Savings Time starts this Sunday).

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com.

Image Credit: Bill Sarver

Election Season Survival Kit

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12522068044_b73c88f4e9_zToday 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:

  1. 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.
  2. 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.
  3. 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):
  4. 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):
  5. 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.

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: DonkeyHotey via Flickr Creative Commons

Resolution Report Card

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As we fast approach 2016, the media are full of retrospectives, best-of lists, worst-of lists, remembrances and clearance sales. The usual accounting.

lantern-festival-06-4-1196554-639x426And, of course, it’s that time of year to consider New Year’s resolutions. But instead of coming up with a new list, I thought I’d review last year’s and see how many resolutions I actually accomplished—and how to move closer to my goals this year.

My top priority for 2015 was to enhance my weekly exercise routine. I took the plunge and joined a community fitness center. But it didn’t work out. The classes mostly consisted of repetitive movements that are hard on my joints, and the studios were as chilly as refrigerators. I could not motivate myself more than maybe three times to go to the gym and use the stationary bike. The one class I really liked cost extra. Not worth the membership. My one big accomplishment: walking 15 minutes to a half-hour around my neighborhood at least three times a week.

My New Year’s remedy: At the recommendation of my cardiologist, I checked out local colleges for indoor tracks, to continue walking warmly and safely this winter. Al is an alumnus of one of them, which gives me spouse privileges at a very reasonable rate for the campus recreation facility. I also found a new Pilates studio nearby with a variety of exercise options that enables me to use a punchcard for drop-in classes, rather than pay for classes I may miss. I have to be more consistent with exercising, to stay strong and flexible, and this seems to be a more realistic formula for success.

Decluttering our home was also high on the list. Well, we got started clearing out books and old toys. Then we stalled. I managed to cull through decades of old files from the filing cabinet in the basement—dating back to the 1980s! But I still have to consolidate what’s left in a manageable way and then transfer current files (sans unnecessary paper) to the filing cabinet from my office floor. Over the winter, I want to finally tackle the family room in the basement. On the plus side, if we hadn’t been decluttering this fall, we never would have discovered a huge plumbing leak, and damage would have been much worse.

Last New Year’s I promised myself I would limit multi-tasking and keep my to-do list to what I could actually accomplish. Let’s just say this is a work in progress. Same for spending undistracted quality time with my family, minus iPhones and other beeping gadgets. Getting better about this, but there’s plenty of room for improvement.

Did I favor locally grown, organic produce when grocery shopping? Not as much as I had intended. Need to work on that one.

Another goal for 2015—saying thank-you to someone for something specific, each day—I  try, but could be more mindful about this. I did fulfill some major community volunteer commitments, another resolution, without draining my energy, which I plan to continue.

Then there was my big creative goal: write the first draft of my novel. I haven’t finished, yet, but I am making steady progress. I’m just about at the halfway point, and I participate in a weekly workshop class in Boston that is helping me to sharpen my writing and stay on task. I’ve learned a great deal about how much is involved in an artistic project this big, and I know, now, that it’s a multi-year undertaking. That’s okay. We took an amazing trip to Europe this summer to do research for my novel that taught me I really can travel, despite the complications of my scleroderma. As I wrote last year, investing in my own art is truly central to my being—and well-being.

I need to remind myself of one more goal from last year—go/do/see someplace/something new each month. So important to keep growing.

As for adding anything new for 2016, the best goal I can think of is this: Remember to just breathe.

Best wishes to all of you, Dear Readers, for a healthy, fulfilling and prosperous 2016. Thank you for your continuing encouragement and thoughtful comments as I enter my fifth year of writing this blog. Let 2016 be a year of more progress toward a cure for scleroderma, and toward a just and lasting peace in this troubled world of ours.

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: Yee Wong

What Really Matters

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At some point in the blur of my Facebook feed this past week, someone posted a cartoon that resonated. Two women are walking down a sidewalk, commiserating. One says to the other, “I want to stay informed, but I also want to keep my sanity.”

OLYMPUS DIGITAL CAMERAThat is exactly how I’m feeling these days. I’ve had numerous conversations with friends about whether the news really is getting worse, or if we’re just hearing more bad news all the time because of social media.

It’s gotten to the point that I’ve had trouble falling asleep a few nights, overloaded by reports of terrorist attacks, backlash back home, predictions of how the U.S. electrical grid is vulnerable (Ted Koppel’s new book) and the hateful, xenophobic rhetoric of the GOP presidential campaign.

Not good for my health, or yours, or anyone’s. But how to strike the right balance? With so much at stake in this election year, I feel an obligation to keep on top of the news. But I really don’t need all the FB posts about the latest outrageous comments by Donald Trump.

I want to know what’s going on in the world, but there is only so much I can absorb about the latest terrorist attacks. Sadly, very sadly, some innocent people are killed every week, somewhere in the world, by terrorists. I’m struggling with this, but all the social media commentary and debate often do more to alarm than enlighten.

This past week, evil struck home with the death of an 18-year-old Massachusetts son, Ezra Schwartz, who was killed in a terror attack in Israel. He was an exemplary young men, and his death rocked the Jewish community here. My eldest attended his packed funeral on Sunday, because they shared the same summer camp. I woke up several mornings, thinking how his mother must be feeling. Heartbreaking. I can barely imagine what she is going through—and all the other mothers and fathers and sisters and brothers around the world who have lost loved ones to terror.

But at some point, I have to stop and just be here, in the present moment, grateful that I live on a safe, tree-lined street in a comfortable home. I need to focus on the gift of a loving, supportive husband and our two incredible daughters, each dedicating her career to helping others. I need to appreciate caring family and friends, a supportive community, my great consulting clients who enable me to work for myself successfully. I need to remember the blessing of an outstanding medical team that helps me to manage my scleroderma and stay as healthy as I am.

And I need to appreciate the fact that our country, with all of its serious problems, also protects freedom of speech—even if a lot of what I’m hearing these days is disturbing, to put it mildly. Staying informed is critical to our democratic process. I just don’t need to stay informed 24/7. Quality, not quantity of information is what really matters.

All that, and a sense of humor, and a good piece of dark chocolate are the only ways to stay sane.

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: John Nyberg