Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

hands

Down to Three

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One of the best things about summer is that my finger ulcers tend to heal. For months I was dealing with as many as six bandaged fingers, changing those bandages twice daily. It took at least a half-hour each time I changed dressings and used up a lot of bandages.

Now, happily, I’m down to three: both thumbs, which are always a problem no matter what time of year, and my right index finger, which is nearly healed up. The thumbs are an issue because they contain so many calcium pits. If you look at an X-ray of my hands, each thumb contains a long chain of calcinosis. The index finger had a big piece of calcium that finally popped out about a month or so ago, then another fragment emerged last week. But it’s closing.

All those hot, hot days in recent weeks have been really helpful, even if the heat is exhausting. Thank goodness.

I see the team at our hospital’s Wound Clinic about every two months, and they were impressed. They also gave me a kind of crystalline medical grade honey it to try. It helps to break down the thick tissue that forms on the inside of my thumbs. You just have to be judicious using it, because I have found in the past with medical grade honey that it can make things worse if you overdo it. But it sure smells good.

So, here’s to summer. I hope those of you in the northern hemisphere are enjoying it, despite the wildfires, intense storms, and heat waves. We need to savor it while we can.

Image: Alexander Mils

And now for some shameless self-promotion. . . . My sincere thanks to all who participated in the cover poll for my forthcoming novel, Line of Flight. More than 400 people voted, and this cover won by a large margin. I’m thrilled, because it was my favorite, too.

And now I’m pleased to announce that my book is available for pre-order. It publishes on November 17, this fall. Pre-orders help the book to get higher rankings on online seller sites, so more people find it. Here are the details and links for pre-orders.

Thanks for your encouragement and support!

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.

 

Yes, You Can Get TSA PreCheck Without a Full Set of Fingerprints

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Memorial Day weekend is over, so that means unofficial summer has arrived (even if it doesn’t feel that way on a chilly afternoon). Al and I will be traveling again soon, and I am looking forward to getting away.

In preparation, I was at AAA recently and noticed a sign for TSA PreCheck®. Unbeknownst to me, our local AAA can do those applications. I had always thought that I had to go into Boston’s Logan International Airport to apply, a major disincentive.

The main reason I had never applied, however, was that you need to be fingerprinted. With all my bandages and skin grafts on my fingers, I thought that was impossible, so why bother?

So I asked about it. And it turns out that the process can accommodate people with hand disabilities. Which had never occurred to me, but is both obvious and appropriate. I made appointments for both of us, and last Monday we went to AAA to apply.

To do the fingerprints, they use a huge tablet. You need to press your fingers onto the screen, and as long as enough of an image is captured, you’re all set. Even if your fingerprints don’t work, or you are missing the primary fingers they want to use (thumbs and index fingers), they can enter an explanation that by-passes the requirement.

In my case, thumbs were out (bandages), as was my right index finger (bandage), and the left index finger is too bent to lie flat on the tablet. But they were able to capture prints from my ring fingers and pinkies on both hands.

A few days later, we received emails that our applications had been accepted. Now we have our TSA PreCheck ID numbers, which I just have to enter on our airlines reservations. Who knew it would be this easy?

I’ll be taking a break over the next few weeks and will have lots to report later in June. In the meantime, be well, Dear Reader.

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: Arthur Mazi

700-plus

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I didn’t realize it at the time, but at the end of December, I wrote my 700th post on this site. I launched Living with Scleroderma on January 3, 2012, and have been posting nearly every week since, with time off for good behavior when on vacation.

That’s a lot of posts. While there always seems to be plenty to write about all the daily challenges of this complex disease, my goal since the beginning has been to emphasize the living over the scleroderma. Whether it is this autoimmune disease or another chronic condition, the biggest challenge of all is to understand that you are much more than your diagnosis. It is a part of you, certainly, and commands all too much attention some days. But I strive not to let my scleroderma define me.

Writing about it weekly, a good discipline in itself, has really helped me to maintain that perspective. Most days, even as I’ll curse like a sailor when I accidentally bang one of my fingers, right where the calcium is pushing just below the skin or at the jagged bone at the tip of my resorbed digits, I don’t really think about it. Scleroderma is a demanding presence in my life, but it doesn’t own me.

Because I can’t let it.

And so, Dear Reader, some of whom have been with me for the past 14 years, thanks for your interest, your comments, and your encouragement. May we all live the fullest lives we are able. Each day is a 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. Please view Privacy Policy here.

Image: Beth Macdonald

Spring Beckons

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Nights here have been clear and cold, and the moon is waxing brightly. As I write on Monday morning, I’m anticipating tonight’s stunning view, when the moon will be full, a huge silver plate in the sky—that is, until 12:44 a.m. Tuesday morning, when a two-hour total lunar eclipse will begin. As the moon passes between our Earth and Sun, it will turn a deep red. Hence the name “Blood Moon.”

A full moon in March in this part of the world is also known as a “Worm Moon,” because it marks the approach of spring, when earthworms begin to emerge from the soil, aerating it for the season of new life. Our frigid weather and mounds of snow are starting to recede. I’m looking forward to springier temperatures soon.

As is always the way, however, this time of year also is the hardest on my hands. Dry heat at home and yo-yoing temperatures outside combine to cause my skin to expand and contract and shred and crack. I have to be extra vigilant about my digital ulcers. Right now I have five fingers bandaged.

Fortunately, I also have a well-timed appointment at our hospital’s Wound Clinic this Thursday, so I’m looking forward to their good advice. Their suggestion to use Cavelon barrier film is helping a lot. I spray it on several ulcers before covering them or leaving them bare as needed, both to protect and manage moisture from ointments.

On my worst ulcer, I’m using Cavelon and then Exuderm film to cover it, which retains natural moisture without macerating the skin. All that gets overlaid with a piece of very soft gauze and fabric bandages. It takes me about a half-hour twice daily to change all the bandages, but at least I’m still able to use my hands.

And so, spring beckons. If you’re a night owl with a clear view of the sky, I hope you enjoyed the eclipse!

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: Atul Vinayak

A-Peeling

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Prepping vegetables for meals is one of those tasks that I often find challenging. I need to wear latex gloves when I cook so I don’t infect my finger ulcers, and this makes handling food difficult, because my fingers have been shortened by both resorption and surgery, so the tips of the gloves always flop around and get in the way. Onions, in particular, are tricky, and my lack of tears from Sjogren’s can make slicing them extremely uncomfortable.

Then there is garlic. I use a lot of garlic in recipes, but it is a beast to peel. I can’t do the trick with slamming the flat side of a chef’s knife on a clove, because I need to protect my hands. So I end up trimming the top and bottom with a paring knife and then slowly picking away the papery skin. Very, very tedious.

That is, until today, when I tried out my new silicon garlic peeler. At least a year ago, a good friend who is an excellent cook introduced me to this little gadget, which I thought was ingenious but never got around to buying—that is, until I had to order some new potholders last week to replace old stained ones that had attracted a mouse. As long as I was finally replacing those gross potholders, why not get the garlic peeler, too?

Here’s how it works: The inside of the tube is covered with bumps to create friction. You place the clove inside, then press down on the tube with the heel of your hand and roll it back and forth a few times. Presto! It neatly removes the skin and leaves you with a perfectly clean garlic clove! Rinse out the tube, and you’re good to go.

Whoever the genius is who invented this handy (literally), inexpensive tool, my heartfelt thanks. Now, if anyone knows of a good tool for easily peeling and slicing onions that won’t make me cry dry tears, I’m all ears.

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.