Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Sight

‘Tis the Season

· · Leave a Comment

April showers (and we’ve had plenty) certainly bring May flowers in my neighborhood. White-blossomed cherry trees and cream-colored callery pears, fuchsia magnolias and pink weeping cherries, along with maples unfurling pale green and purple leaves, grace sidewalks and lawns. White and violet violets speckle lawns that grow lusher by the day. The air smells delightful. With all the rain of late, pollen is subdued, and I haven’t started sneezing, yet.

In keeping with the season, another sign of spring has emerged: I have an infected ulcer in my left thumb. This spiked suddenly last Monday. Fortunately, it’s responding to antibiotics, which seem to be a perennial part of my world at this time of year. A good thing, because I’m traveling this week to New York for a mix of business and pleasure.

As my thumb became irritated, I wondered if I’d aggravated it by typing. Then I realized that I never use it to type. I’ve adapted to so many finger injuries over the decades that I automatically compensate for fingers that can’t comfortably or effectively strike the keys. Which made me wonder: How many fingers am I actually using to touch-type?

This is a bit like asking a centipede how it walks. I really have to stop and notice what I’m doing automatically, which can lead to more typos. But the answer is this: I use my pinky and ring fingers on my left hand, and my thumb, ring finger and pinky on my right. And I can still type quickly enough so that my thoughts translate almost immediately to the computer screen. It helps, significantly, to use an Apple “chiclet” keyboard, which has nearly flat keys with an easy touch, and a minimal rise so it’s easy on my wrists.

When my hands fell apart with severe ulcers two years ago (also in the spring), I learned to use Dragon dictation software to write. It was certainly a big help and enabled me to keep writing. But dictation taps a different part of the brain than writing brain-to-hands, and I will keep typing, even with only five fingers, as long as I can, because it is simply faster and more intuitive.

And so, I am dashing off this entry before I leave on my travels. Looking forward to fresh adventures—and to seeing how the flowers have grow when I come home.

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. Please view Privacy Policy here.

If the Shoe Fits

· · 2 Comments

Dear Reader: With this post, I’ve switched to a different blog distribution platform. You can still get to the entire post from your email—please just click on the Read More link and it will bring you to my blog’s website, with the full text. EH

I’ve been on a quest for good walking shoes for at least a month, now. With the weather warming and travel plans ahead, I want to be sure that I have a reliable, comfortable pair that will minimize my feet issues, even as I am coming to accept that no pair exists that will make walking fully pain-free.

This is always a challenge. The biggest stumbling block is that you can’t walk outside in shoes that you’re trying out at home without committing to buying them. (I know of one clear exception, Allbirds, which gives you a 30 day trial of walking anywhere—if the shoes don’t work out, you send them back and they are donated to people who are homeless. Zappos has also accepted returned shoes I’ve lightly worn once outside, but I don’t want to take unfair advantage of that option.) So how to really know if the shoes will be comfortable on pavement or uneven terrain, which are always the big challenges?

My strategy now is to wear a pair I’ve bought around the house for a few days. Usually, if there’s a major fit issue, I’ll know right away. If there are other structural issues, I’ll know in a day. If the shoes are still comfortable after a couple of days, I’ll take the plunge and wear them outside.

But, first, they have to meet a number of criteria. The fat pads on my feet have thinned so much from scleroderma that I have to set a high bar:

  • Is there plenty of room in the toe box? No pinching?
  • Are they lightweight so as not to aggravate my joints?
  • Is the shoe made of materials that breathe, to avoid trapping perspiration and triggering Raynaud’s or causing skin breakdown?
  • Does my foot feel balanced, with pressure evenly distributed over the entire sole?
  • Does walking in the shoes adversely affect my knees, back or hips?
  • Is there sufficient arch support?
  • Is there a removable foot bed, so I can use my own orthotics or a good ready-made alternative?
  • Is there enough shock-absorbency, so the shoe doesn’t tire my feet or trigger the neuropathy in my right foot?
  • Can I walk without noticing the shoes? Do they fade into the background?

Then there is the question of style. I refuse to wear shoes that look like boats. Fortunately, now that so many of us baby boomers are aging, and many of us have buying power, there are a lot more alternatives for comfortable shoes that are at least somewhat attractive, even if heels are out of the question (and bad for your feet, anyway) and daintier styles lack necessary support. When I first began having these issues several decades ago, the choices were much slimmer. Now there are options, even for my particular taste.

If the shoes pass all of the above tests, then it’s time to risk a test drive around the block. None of this is foolproof. I’ve tested shoes outside, thought I had a winner, only to discover after repeated wear that they don’t work out in the long run. This has happened more times than I would like.

Which brings me to my latest acquisition, a pair of Abeo sneakers that I found at The Walking Company. I’m on first-name basis with the sales clerk, at this point. She knows my issues and really tries to help me find the right shoe. I landed on this pair after several rounds of other shoes that didn’t work out. Then I went back and upgraded the removable insoles. That combination seems to be on target.

My walk around the block on Monday in lovely sunshine was an A-. Pretty good, all things considered. While there is no pair that will make walking painless or tireless, these sneakers give me hope that I’ll be able to sustain longer walks—balanced with thoughtful pacing and rests. Staying active is simply too important to give in to all the obstacles that this disease throws in my path.

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. Please view Privacy Policy here.

65 and 20

· · 2 Comments

On Thursday I turned 65. And today marks the 20th anniversary of my mother’s death. Two milestones linked by memory and blooms.

Last week, in a burst of warmth and wet, all the trees unfurled their chartreuse buds, crabapples and weeping cherries blushed, forsythias gleamed. This is often nature’s gift near my birthday, the sudden, welcome spray of pastels. Winter’s subtle grays are forgotten, and the earth smells sweet.

I spent much of my birthday cooking, with Al as sous chef, for our Passover seder Friday night. The prospect had felt daunting, and less than welcome as a way to mark my 65th, but it turned out to be a lot of fun. I was simply in a good mood. We enjoyed each other’s company, preparing each course at a relaxed pace. Midday, we broke for lunch out, and Al—always the master of surprise—wrapped up our meal with a trip to a wonderful jewelry store, with an invitation to pick out whatever I wanted. Later, when all the cooking was done and the kitchen cleaned, we went out again for a birthday dinner. Throughout the day, I received calls from family and best wishes from friends. I felt thoroughly celebrated and well prepared for the holiday, renewed.

On my 45th birthday, days before my mother’s death in 1999, we spoke on the phone. She was in good spirits because my sister and her family were visiting. A rare and aggressive form of thyroid cancer had appeared suddenly in December, when she brushed a hair from her neck and first noticed a lump. The disease took her life in four months. I had visited numerous times during that winter and early spring and was with her when she passed. In those last moments, as she sipped her final breaths, I had the distinct feeling that she was simply slipping out of her body to somewhere unknown.

In many ways, there was much I did not know about her and have only learned since her death. For a woman of her generation and German heritage, motherhood was a mix of compassion and authority. We had many long talks during my childhood and adolescence, and I learned to be a good listener from her example. But she always maintained privacy about her innermost thoughts and feelings, and revealed little of her own formative years, beyond certain familiar stories of life in Berlin during the rise of the Nazis and her transition to embracing her American citizenship. With twenty years’ perspective, I now understand that the past was simply a place she wanted to leave behind.

Since Al and I traveled to Prague and Berlin as part of our summer vacation, to honor the memory of my great grandparents who were murdered in the Holocaust, I have been thinking of her more, wondering what she really felt during that time, wishing I could ask her. Miraculously, last fall, out of the blue, I heard from a cousin I have never met, whose nonagenarian mother is still alive and able. At the end of May, I am going to visit them in Florida. And so, I may get some answers from the woman who is my mother’s first cousin and the last living link to her generation. This is a great, unexpected blessing.

When we laid my mother to rest, a white cherry sapling had recently been planted in that section of the cemetery, in ground softened by spring’s thaw. It was too young to blossom, then, but casts ample shade near her and my father’s grave today. Its size always surprises me when I visit, a marker of how much time has passed. I like to think, even as she tried to bury her past, that my mother would be pleased that I am reclaiming it, not only for myself through my travels and studying German, but also for my daughters who barely knew her as children.

How much do we ever know our parents, let alone ourselves? I will give the last word to Rainer Maria Rilke, from Requiem for a Friend (The Selected Poetry of Rainer Maria Rilke, trans Stephen Mitchell):

I have my dead, and I have let them go,
and was amazed to see them so contented,
so soon at home in being dead, so cheerful,
so unlike their reputations. Only you
return; brush past me, loiter, try to knock
against something; so that the sound
reveals your presence. . . .

Ich habe Tote, und ich ließ sie hin
und war erstaunt, sie so getrost zu sehn,
so rasch zuhaus im Totsein, so gerecht,
so anders als ihr Ruf. Nur du, du kehrst
zurück; du streifst mich, du gehst um, du willst
an etwas stoßen, daß es klingt von dir
und dich verrät. . . .

 

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. Please view Privacy Policy here.

Image: Paul Herwitz

Mud Season

· · Leave a Comment

It’s getting warmer and muckier here in Massachusetts—but not yet so consistently warm that the bugs are swarming. So, perfect weather for a walk in the woods this past weekend, albeit stepping carefully around muddy tracks and vernal pools. Life’s cycle of renewal always boosts my spirits in the spring. I hope it does for you, too. Enjoy.

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. Please view Privacy Policy here.

Perchance to Dream

· · Leave a Comment

I’ve been having some trouble falling asleep, lately. I go through these bouts from time to time, when I’m trying to do too much and my mind is overstimulated, or when I’ve sat up at my computer too late, or when I watch too much news. Some of the solutions are obvious (plan in evening down time! no computer after 9 o’clock! don’t OD on the latest political crisis!). But I’ve also decided to use regular guided meditation in the morning to help me calm my thoughts.

I subscribe to Headspace, which is a great app with many guided meditation series to help with various issues. When I was dealing with my horrific ulcers the summer before last and the surgical aftermath, the series on pain management was a real boon. This time, I’m meditating my way through the sleep series, which includes both practical advice for good “sleep hygiene” as well as a mind-calming meditation to be done in the morning that helps you sleep better at night.

I was skeptical of how this would work, but lo and behold, after about ten morning sessions, I started to fall asleep more readily. I am less intimidated by the prospect of needing to fall asleep, which is the insomniac’s hamster wheel, and more able to relax. (Of course, now that I’m writing this down, who knows what will happen tonight?)

In any case, the meditation has an added benefit. Monday morning it was cold here, a drop from the mid-60s on Sunday to a wind-chilling mid-30s (welcome to New England). When I started my meditation, however, I didn’t have on any socks, because I’m ready for spring and didn’t feel like it. Of course, that meant my feet were ice cold. I wondered if meditating would improve my circulation. Sure enough, by the end of my ten minutes of visualizing a warm glow filling my body from bottom to top, my toes were actually a little pink. Not toasty, but not freezing, either.

Years ago, I had read how meditation could help Raynaud’s. I once even tried some biofeedback practice to see if it would make a difference, but didn’t have the patience to follow through consistently. Here was yet another reminder that the mind truly does influence the body. And ten minutes of calm in the morning certainly beats that nagging voice in my head urging me to start thinking-planning-doing.

I don’t expect my sleep issues to disappear, but at least it feels more manageable at present. And my toes are happier, too.

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. Please view Privacy Policy here.

Image: Cris Saur