Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

body-mind balance

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.

Birthday Jaunt

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Covid over (despite a scare last Monday when I developed a sore throat that, fortunately, resolved on its own), Al and I celebrated my birthday last Wednesday and Thursday with a quick trip to New Haven and New York City. My goal was to see a couple of art exhibits, one at Yale and the other at the Neue Galerie in Manhattan. The weather was sunny, the art stunning, the food excellent.

We stayed overnight in New Haven at a hotel that functions solely on electricity and is fossil-fuel-free, the Hotel Marcel, named for Marcel Breuer, a Bauhaus luminary who had originally designed the building as the corporate headquarters for Armstrong Rubber Co. Converted to a hotel with a commitment to sustainability and many curated Bauhaus details, it aims to be the first certified “passive house” hotel in the U.S. by the end of next year.

So, it was a fascinating trip, on many levels. Here are some of my favorite pieces from the Yale Art Gallery (no photos allowed at the Klimt landscape exhibit at the Neue Galerie). Photo above is one of my favorite NYC views, the constellation mural and lights on the ceiling of Grand Central Station. Enjoy!

Edvard Munch, Toward the Forest I, 1897
Ernst Ludwig Kirchner, Schlemihl’s Encounter with His Shadow, 1915

Joan Miró, Jeune fille s’evadant (Girl Escaping), 1968
El Anatsui, Society Woman’s Cloth (Gold), 2006
Paul Klee, Heitere Gebirgslandschaft (Joyful Mountain Landscape), 1929
Wassily Kandinsky, Mit baumtem Kreis (Multicolored Circle), 1923
Josef Albers, Skyscrapers A, ca. 1929

 

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.

Spring at Last

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On Sunday, I walked outside without a coat for the first time this year. What a blessing, especially after feeling so cooped up 10 days ago with Covid. It’s been spring on the calendar for more than a month, but this was the first day that really felt springy.

As far as I can tell, I’m done with the virus. Whatever lingering sinus congestion (mild) is now attributable to allergies (the downside of spring). When I went for a routine pulmonary function test on Friday, at first the respiratory tech was not sure if she could administer it to me, given my recent Covid experience. But fortunately she was able to check with the hospital’s chief of infectious diseases, who agreed with my expectation that, given revised CDC protocols, I was free and clear.

(In case you’re not aware, the new guidance basically says that after 24 hours free of fever without OTC meds and no symptoms, you can go out masked. After five days of masking, you no longer need the mask, which is where I was on Friday, eight days from no symptoms, thanks to Paxlovid.)

I completed the test, which is never easy at this point, but the good news was that my diffusion rate (not stellar) had not really changed—which has been the case for several years now. So that was encouraging.

And a relief after my other health debacle last week—skillfully scratching my cornea in my right eye on Thursday when I was putting in my scleral lenses. I wasn’t sure, at first, why my eye was bothering me with the lens in place, because it bathes my eye in saline. But once I removed it, my eye continued to smart, and going outside in bright sunshine was truly uncomfortable.

Don’t try driving with a scratched cornea. I did okay, but my eye was tearing and I could barely keep it open. Bad idea. Very bad idea. Back home, after flushing my eye with drops, I used some eye gel and covered my eye with gauze and paper tape for several hours, which made it tolerable.

Fortunately, on Friday, before the PFT, I saw a specialist at the local college eye clinic, who assessed it and thought I was on the mend, though he was prepared to do an emergency debridement if need be. Thank goodness that wasn’t necessary. And I was fine by the weekend.

So, all the more reason to be glad to walk outside without a coat or a jacket or even a sweater on Sunday. No more Covid. No more eye pain. Just sun and flowers and blooming buds on our new cherry tree. A good way to begin a new week.

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.

Best Laid Plans Department

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And so, despite my best efforts, I did get Covid last week, after all. In fact, I tested positive on Tuesday afternoon. At first, I thought it was just allergies. All the trees have finally bloomed here, and pollen is in the air.

Just to be sure, though, I took a test. When I first looked at the results, I thought I was still okay, but there was the faintest positive stripe. So I repeated it. Same thing. And by evening, I didn’t really need to doubt it. I was starting to get chills, and my throat was swelling.

By morning, I felt truly rotten. No fever, but all the symptoms I get with a virus, especially severe Raynaud’s and joint aches and headache and sinus congestion. My hands felt like blocks of ice, and it took at least a half hour of huddling under blankets and meditative breathing to regain feeling. I called our primary care nurse practitioner’s office, and by midday I’d gotten the go-ahead to start Paxlovid.

This is the second time I’ve caught Covid. Last time was two summers ago, right before we were supposed to go on vacation, causing a total reorganization of travel plans.

This time, it hit right before my 70th birthday and Passover, which begins tonight. So all plans for both had to be scuttled and rethought.

Thanks to my wonderful daughters and husband, my birthday turned out to be a lovely celebration, despite being sick. The Paxlovid kicked in enough for me to feel somewhat better when I woke on Thursday—and discovered in my email a gift certificate from the family, orchestrated by my daughters, for an Air BnB writing retreat, good for anytime I want to go. In addition, my younger daughter had created a fantastic 70th birthday video with greetings from family and friends, including some people I had lost touch with over the years. It gave me a great boost and is a wonderful keepsake.

Al brought home flowers, and later, he picked up a nice dinner from one of our favorite restaurants to eat at home. So, I felt fully celebrated and grateful—and resilient. Take that, Covid!

We’ve had to upend our Passover plans, because we are just barely clearing the hurdle of having to mask in public (five days after you feel better, have no fever and no symptoms). So we are doing a Zoom seder with our immediate family for the first night, and just me and Al, the second. It’s a small and quiet holiday this year. Given my energy level post Covid, that’s just fine. Cooking for just the two of us on Sunday wiped me out.

The one bright side of this, as my Boston Medical rheumatologist said to me weeks ago when we were discussing pros and cons of a spring Covid booster shot, now that I’ve had the latest variant, most likely JN.1, I’ve gained some protection against it. At least, I sure hope so. This virus is not to be messed with, especially for those of us with compromised immune systems.

And so, Dear Reader, I hope you stay well and avoid Covid. But if it nabs you, be sure to ask for Paxlovid. It significantly reduces risks of the virus and really made a huge difference for me. The most recent research says chances of rebound are slim. It makes your mouth taste bitter, but that’s a small price to pay.

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.