Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Body

Hand-off

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I’ve been dropping things lately. This is largely due to calcinosis in my thumbs that makes it harder to hold on. My dexterity waxes and wanes, depending on how a particular piece of calcium is working its way out through the skin, and currently some shards are on the move.

And so, Sunday night, when I tried to lift a large pot of cooked pasta over to the kitchen sink to strain out the water, you guessed it, the pot slipped and I splashed hot pasta water all over the kitchen floor. Thankfully, not the cooked pasta! And I managed to move out of the way so I didn’t get burned.

But I was really annoyed with myself. Al was home, fortunately, and calmly cleaned up all the water on the floor with old newspapers and towels, while I groused.

Finally I calmed down. And the meal turned out well.

I don’t usually get so frustrated with my hands. I try to take very good care of them and respect their limitations.

Which, of course, are my limitations. It’s a strange aspect of this disease, that my hands can look and feel so alien and disfunctional, but they remain a part of me. Even after four-plus decades living with scleroderma, I sometimes still find this surprising. I see my hands all the time, but there are moments when I’ll catch their reflection framed in a mirror and am shocked at how bizarre they look.

Then I remind myself that they are me, that regardless of how strange my hands appear, I’m still able to do as much as I do. And to be grateful for that. And to forgive myself for getting frustrated. It just is.

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.

Too Darn Hot

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This past week here in Massachusetts has been hot. Really hot. And humid. As much as I like warm weather, temps in the 90s and high dew points are not my preference. Low 80s with a light breeze and sunshine is my favorite kind of day. Just right for my Raynaud’s, no need for air conditioning, which is a whole other topic (as in, I hate it unless it’s a sweltering 90+ degree day with high humidity).

As it was, I had to break down and put on one of our heat pumps, which doubles as an air conditioner, or I would not have been able to function. The heat pump in our living room is powerful enough to cool the entire first floor. Later in the day, I would turn on the pumps in two of the upstairs bedrooms to reduce the heat that had risen to the second floor. Our attic fan helped, too.

Overall, pretty effective strategy. But the heat still left me feeling drained.

On Monday, I learned that there was another reason that the weather left me dragging. I had a check-up with my wonderful Boston Medical cardiologist, and in the course of our conversation, he told me that one of my medications, a calcium channel blocker, Diltiazam, which has worked miracles for my heart issues, can also make you feel light-headed in high heat. The drug lowers blood pressure, so if you perspire a lot and don’t drink enough fluids, your BP can drop even further.

I never got to the point of feeling faint, but I definitely felt off during the heat wave (and we have another few days on the way). I’m always drinking seltzer, so I never was really dehydrated. But on one day in particular, when I misjudged the humidity and left windows open overnight, I perspired a lot, which I rarely do, and felt more draggy. So, now I know better.

Which brings me to my main point: In extreme heat, which is becoming more common in summers as our planet warms, it’s really important to know how your meds can affect your body’s ability to regulate itself. Here’s a good overview from Scientific American.

So, Dear Reader, please be informed, stay hydrated, and stay as cool as possible during what promises to be another record hot summer. And, when the temps look daunting, here’s a Broadway cast recording of Too Darn Hot by Cole Porter, from the musical Kiss Me Kate, to help you chill. 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. Please view Privacy Policy here.

Image: Library of Congress

The More Things Change

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Father’s Day came up suddenly, or so it seemed. When I asked Al last week what he’d like to do, he mentioned a play at a local academy and dinner out. That seemed like a fine plan, as neither of our daughters was in town. But as we took a long walk on Saturday afternoon, I had another idea. “What about Block Island?” This small island off the Rhode Island coast has been a favorite of ours for years and the site of many family vacations when our daughters were young. The weather forecast was good. And so, we went.

The day was picture perfect, and the island a peaceful oasis. As soon as we got on the Point Judith ferry, we both began to relax. Young kids and their watchful dads scurried up and down the deck, so much like our own girls decades ago. And as the familiar New Shoreham waterfront, with its vintage shingled hotels and stores, came into view, I could only smile. Arriving is always like stepping into simpler times and fond memories.

Not everything was the same. We discovered that one of the iconic century-plus-old hotels, the Harborside Inn, had burned down last summer, replaced for now by bicycle rentals. Plans are in the works to rebuild it with a replica that meets new building codes. This is one of the things I love about Block Island—you won’t find McDonald’s or Starbucks here.

We also learned that ferry service had been canceled for several days last September due to high winds and rough seas, stranding some visitors until the boats were able to sail once more. This we heard from one of the dads we’d seen on the ferry, whom we met again as he played with his toddler on the beach. We empathized and shared our own Block Island adventure—our first visit, when our eldest was only three, coincided with Hurricane Bob in August 1991. The eye of the storm passed right over the island, and we spent the day huddled with many others at the only school there. Definitely a memorable trip. It was also memorable because it was the week that I realized I was pregnant with our younger daughter.

So, Block Island holds a fond place in our hearts. We ate at our favorite restaurants, relaxed on the beach, and took a long walk up the shore. We read. Al swam, twice. I sketched. The surf’s sound soothed. No sea glass, this time. But Al had a great Father’s Day, and so did I. Here are some pics from our day. 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.

The Eyes Have It

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Scleroderma is complex enough on its own, but Sjogren’s Syndrome, which can accompany scleroderma, adds yet another layer of complexity. Sjogren’s is also an autoimmune disease, which typically presents with dry eyes and dry mouth but can cause other internal organ issues. I’ve lived with this for decades alongside scleroderma, and I take medication that manages the dry mouth component. But the dry eyes piece is a whole other challenge.

So I was really thrilled to discover a new (here in the U.S., at least) eye-drop that my dry eye specialist recommended. EvoTears® (Augentropfen) is unlike any eye-drop I’ve used previously. You can barely feel the drops when you use them (which makes it a bit tricky to know if you’ve actually succeeded in getting them in your eyes). As my optometrist explained, they strengthen the oil layer of natural tear film to keep the watery part of tears from evaporating. Given that my eyes barely make tears anymore, I was hopeful.

And the drops work. Brilliantly. The first day I tried them, I actually forgot about my eyes for the whole day, a first in a very long time as my eyes have gotten drier. (As in, even if I need to cry, I rarely can—especially uncomfortable when slicing onions.) I was able to read for several hours without discomfort, to work at my computer without discomfort, even take a walk on a windy day without discomfort.

Over the weekend, I experimented with using them before inserting my scleral lenses, and they seem to keep the area of my eyes beyond the lenses moisturized and more comfortable, a big plus.

However, there is a catch.

EvoTears are only available by prescription in the U.S. A one month supply with my Medicare insurance costs about $180. Meanwhile, in Europe (they are made in Germany), they are sold over the counter and cost about one-tenth of that co-pay.

My optometrist advised me to look on EBay, and sure enough, I found a supplier in Greece. The cost, including shipping, was about $60. My drops arrived within a month of my order (much sooner than the 2-3 month estimate), wrapped in white plastic tape printed with large red Greek letters (no idea what they meant) and a form that stated the shipment had passed U.S. Customs (thank goodness). I had to sign for them.

And so, on our next trip abroad, I will be on the lookout for EvoTears. Meanwhile, I’ll be ordering more from Greece. And maybe at some point in the not-too-distant future, the U.S. healthcare complex will find a way to make these as affordable here as they are abroad.

Not holding my breath.

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: Ed Leszczynski

Butt in Chair

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Writing is one of those pursuits that you need to do sitting down. Of course you can stand or walk around as you dictate text, and I’m sure that as AI gets better, dictation will get easier and more accurate. But having tried dictation software several years ago when my hands were very damaged from ulcers and subsequent surgery, I am not a fan. Speaking sentences taps a different part of my brain than writing with my fingers, either longhand or at a keyboard. I much prefer the fluidity of handwriting or typing.

Standing desks are a non-starter for me, because my feet don’t do well when I stand for long periods. Which means I spend a lot of time at my computer, sitting. This has become more difficult, of late. I have a decent desk chair, with a mesh seat and back that can be adjusted for height and angle. But more and more often, when I get up, my back hurts, especially at the base of my spine. I have to press it with my fist to propel forward and get the pain to ease.

Time for a new chair. But no guarantees that a chair in my price range can solve the problem (I am not about to lay out $500 – $1,000 for a top-of-the-line chair). So I did some research last week about cushions that can relieve coccyx bone pain. And I found one with good reviews, a Balance All-Gel cushion from Medline, which I’ve used previously for their extensive line of wound care products.

This cushion is not cheap. In fact, I could have bought a new chair in my price range for the same amount. But it is a special gel pad that breathes, actually designed for wheelchair users. It’s only two inches thick, compared to other coccyx bone cushions, which are typically much thicker, use some kind of memory foam, and have a cut-out at the back that can relieve the immediate coccyx pain but possibly also aggravate sciatica.

As I write on Monday, it’s the second day I’ve tried it, and the first full day using it as I sit at my computer. I was really not sure yesterday. It seemed hard and kind of weird, because it has a grid inside that feels a bit like sitting on a waffle. But today I’m feeling more confident that I made the right choice. When I stand up, I do not have that soreness in my tailbone. I’m also sitting up straighter, due in part to the cushion and in part to how I adjusted my chair to accommodate it. That’s certainly a plus. The jury is still out, and I’ve saved the boxes it came in, but I am encouraged.

Of course, the obvious solution to all this is to get up more often and move around, so I don’t get too stiff. I also decided to try yoga again, so I signed up for a class later this week.

Aches and pains are all a part of aging, as well as the premature aging that comes with scleroderma. My late father used to say that any problem can be solved if you have the right tools. Certainly a good mindset that continues to guide me through the messy complexity of chronicity. Here’s to you, Dad. Happy Father’s Day.

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.