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Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

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Sjogren's syndrome

Drips and Drops

Evelyn Herwitz · October 14, 2025 · Leave a Comment

It’s been raining here for about the past 24 hours, much needed after a long dry spell. According to our official state website that tracks such matters, we are in a “significant drought.” You can tell that we haven’t had enough rain this summer because the fall foliage is muted. Trees need moisture to flame out.

So, I’m glad for the rain, even as it’s chilly and I’m putting on more sweaters. I turn on the heat in my office for the first time this fall and watch the rain dripping off the mountain laurel outside my office window. The drops cling to the leaves like glowing orbs until their surface tension breaks and they’re plucked by gravity’s pull.

My steroid eye drops arrived over the weekend. I think they are helping, though it’s too soon to be sure. I tried to follow the directions for application (pull your lower lid down to make a pouch for the drop, then hold it closed for a minute or so to be sure it doesn’t spill out of your eye), but I found it nearly impossible. My eyelids are (a) swollen and (b) not that flexible. So I just drop them in while looking up and do my best to not waste too much. My vision is still blurry, but my eyes don’t seem quite as sensitive. So far.

The gray sky helps. Bright light has been painful.

My German teacher tells me that the word for eye drops is Augentropfen. Somehow, this seems to capture the sensation of putting them in—the explosive pf feels like the fluid that always spills over.

I like it when words encapsulate sensations.

Like the word encapsulate. which sounds to my ear like a thought being snapped up.

drip

drip

drop

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: Iuliia Naumova

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Filed Under: Body, Mind, Sight, Touch Tagged With: how to stay warm, managing chronic disease, Sjogren's syndrome

Out of Focus

Evelyn Herwitz · October 7, 2025 · Leave a Comment

My eyes have been giving me a hard time, of late. Extremely dry from Sjögrens, they are not happy. No matter what kind of eye drops I use, they burn and itch. When I read, I see a shadow around the letters. My vision is often blurred, especially by day’s end. Bright sunlight is intolerable. My eyelids are swollen to the point of being unable to put in my scleral lenses as a possible source of relief.

So last week I wrote to my wonderful dry eye specialist and asked what to do. I guessed my eyes were inflamed or maybe infected. He shoehorned me into his Monday afternoon schedule, a good thing, because he was off to a conference for the rest of the week, and I don’t know how I would have lasted that long without a visit.

Dr. S is a professor at a local college with a program in optometry, and he is always up on the latest therapies for dry eyes. Just over a month ago, he switched me from Restasis, which is a standard eye drop for my condition, but which is irritating, to a newer drop called Cequa, which is less irritating and seems to last longer. He also found me the best price for my insurance coverage. (Among his many virtues, he loves a good fight with insurance companies.)

As is always the case at these visits, I was first assessed by an optometry student, then by Dr. S., who also loves to teach. Given the complexity of my case, with both scleroderma that makes it difficult to open my eyes wide and Sjögrens, I provide quite the teachable moment. Which is fine. I’m always glad to help new medical professionals learn about these diseases so that someone else may get better care in the future.

After a thorough exam with two types of dyes to determine how bad my corneal abrasions are, eye pressure check, and more, we came down to my first suspicion—for whatever reason, my eyes are inflamed, so any drops are irritating. Dr. S recommended a new, mild steroid eye drop to calm them down. Now it’s just a matter of finding out how much the drops cost.

As we were discussing that latter point, the student opined that it shouldn’t be too expensive. To which Dr. S noted that, while medications for glaucoma (which the student had been focused on in his previous clinical rounds) are affordable, insurance companies do not (yet) recognize dry eyes, even from Sjögrens, as a condition worth subsidizing. So what if it makes vision difficult?

And so, I await the insurance verdict and a decision on what I can afford. Honestly, it’s worth a lot to me. Here’s hoping the price is within reach.

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: Jr Korpa

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Filed Under: Mind, Sight, Touch Tagged With: dry eyes, managing chronic disease, resilience, Sjogren's syndrome

Sew-sew

Evelyn Herwitz · July 8, 2025 · 4 Comments

I’ve had some sewing projects in mind for months—in particular, a dress that I sewed up last summer in a test fabric that I liked so much, I’ve been wearing it on hot days. It would look lovely and feel great in a very soft purple cotton blend that I’ve had in my fabric stash for, literally, decades.

So, with my digital ulcers doing better (summer bonus), though still bandaged, on July 4th I took the afternoon to cut out the pattern pieces. (I use a rotary blade for precision and ease of handling.) In so doing, I realized this would be a tricky project, because the fabric is so soft that it slips and stretches if I’m not careful.

Yesterday it was quite hot outside, in the 90s, so I had to put on the A/C. We have heat pumps that double as air conditioners, and they blow cooled air. Very effective, but with my Sjogren’s, they also dry my eyes even more than normal. But I had the time to start sewing, and I set to work.

It took me about a half hour to thread my serger, and more time to diagnose an issue with my sewing machine, which kept jamming until I realized that the thread had jumped one of the guide loops. The first dart sewed up perfectly. The second slipped despite pinning it in place (a challenge with bandaged fingers) and I had to remove stitches and redo it twice more. But I was not discouraged.

Four more seams on the serger sewed up nicely. I pressed everything carefully and moved on to the next step, a bias-bound neckline. And here’s where I ran into trouble.

When I made the test version, on more stable cotton, I was able to easily manipulate the material and sew it perfectly. But this fabric was a whole other animal. Using the same approach as last time was, simply put, a mess. I couldn’t control the fabric, my stitching was uneven, and I quit two-thirds of the way through the process because I realized it would not work.

Part of the problem was my hands—I could not feel the fabric through bandages in order to guide it in place. And part of the problem was my eyes—so dried from the A/C that my vision was blurring. Even using a small focused light wasn’t enough help.

So, with some difficulty I pulled out the stitches and put the project down. I have an idea of how to fix it, and enough left-over fabric, if needed. But if there’s one thing I’ve learned over the years, it’s to stop when I’m frustrated, set the problem aside, and give myself time to rethink my approach. It’s really hot again for the next couple of days, so I’ll need to take both my very dry eyes and my hands into account.

But I will finish the dress.

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.

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Filed Under: Body, Mind, Sight, Touch Tagged With: finger ulcers, hands, resilience, Sjogren's syndrome

No Easy Fix

Evelyn Herwitz · February 25, 2025 · 11 Comments

So, here’s what I learned at my optometrist last week, with a thanks to all who expressed concern and good wishes:

My blurry vision is due to the fact that my eyes simply don’t make enough tears, the result of Sjögren’s Syndrome that I’ve had for decades. The relief I’ve gotten from using EvoTears, which form a moisture-trapping film over my eyes, is real, but not enough to keep my corneas truly healthy. So, especially in my right eye, which is more blurred, my vision is effectively analogous to looking through a dirty car windshield. This isn’t cataracts. It’s Sjögren’s. And there’s no point in updating my eyeglasses prescription until my corneas heal, because I can’t get an accurate assessment of any vision changes right now.

The other important fact I learned: The Restasis drops (standard treatment for dry eyes) that I use before the EvoTears are in a castor oil suspension. I need to wait a half-hour between the two eye drops, or I’m effectively trapping the castor oil in my eyes. This explains some of the irritation I’ve been experiencing. So, that’s an easy fix.

My optometrist gave me samples of a varenicline solution nasal spray, which I’ve used before, that stimulates tears, to see if this in combination with both eye drops will help. There are two issues with this approach: First, the spray helps, not not markedly, so far. Second, the nasal spray is outrageously expensive, available only by prescription, and not covered by my insurance.

So, I’m back to finding a way to tolerate the scleral lenses. He checked both lenses for me, and there are no scratches, so however I injured my eye a few months ago was some kind of fluke in the way I inserted the left one. I will need to keep the lenses in at least four hours a day, four to five days a week, to really heal my corneas and maintain them.

With six fingers in bandages right now, including that left ring finger still healing from a lost nail and an infection, that’s a challenge. So, I’ll just need to tough it out with the medications I have until I have better dexterity again. (As a side note, I’m typing with just my left pinky on the left hand right now, and somehow I’ve learned to type by touch and don’t have to look at the keyboard. So, that’s some progress!)

If there is any advantage from dealing with scleroderma and its sidekick diseases for more than 40 years, it’s this: I know my body does eventually heal from assaults like this. It just takes time and a lot of patience and vigilance. As the weather warms and my hands improve in their seasonal cycle, I should be able to master the lenses again and find the right balance. I’m grateful that I have access to excellent care and medications and the scleral lenses, even if they are difficult to deal with. The alternative is much, much worse.

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: Unsplash+

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Filed Under: Body, Mind, Sight, Touch Tagged With: adaptive tools, body-mind balance, finger ulcers, Sjogren's syndrome, stress

All a Blur

Evelyn Herwitz · February 18, 2025 · 6 Comments

It’s a good thing I’m seeing my eye doctor this week for my very dry eyes. For several months, I’ve been struggling with blurred vision, and it is getting worse—to the point where it’s affecting my ability to read easily and see the computer screen clearly. This could be due to one or a combination of factors:

  • My eyeglasses need a new prescription. Definitely a part of the mix.
  • My Sjogrens is getting worse. Also possible.
  • The house is very dry, which is not helping. And no, we don’t use a humidifier, because we still have old fashioned radiators and baseboard heat and heat pumps, all of which are drying for my eyes. Plus, a room humidifier is a pain to keep clean and not that effective. But I need a warm house to manage my Raynauds, especially in recent weeks when it has been extremely cold here.
  • I’m having a reaction to my EvoTears eye drops, which up to this point have been nothing short of a miracle. They form a protective film on my eyes that retains moisture. However, blurred vision can be a side effect. Really hoping this is not the issue.
  • I have some kind of underlying allergy or infection in my eyes that is causing them to get goopy and blurry.

I am as meticulous with eye care as I am with my hands. I use gentle eye drops to clear them in the morning, then wash around my eyelids with warm water and a dot of baby shampoos to clear the tear ducts, then use Restasis for dry eyes, then the EvoTears. At night, I do another drop of Restasis and then use an overnight eye gel. This has worked well for a long time. But something has shifted. My vision is fine when I complete my morning routine but soon blurs, as if my eyes are making another filmy substance that interferes with my sight.

My eye doctor, who runs the dry eye clinic at a local college that teaches state-of-the-art optometry, has been a genius at diagnosing my symptoms and helping me find solutions, including the EvoTears, which I order from Europe, because they require an expensive prescription here but are sold OTC there.

My appointment is tomorrow. It can’t come a day too soon. Will report back when I have some answers.

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: Nigel Hoare

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Filed Under: Body, Mind, Sight Tagged With: dry eyes, Sjogren's syndrome

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About the Writer

When not writing about living fully with chronic health challenges, Evelyn Herwitz helps her marketing clients tell great stories about their good works. She would love to win a MacArthur grant and write fiction all day. Read More…

Blog Archive

Recent Posts

  • Drips and Drops
  • Out of Focus
  • Bandage Break
  • Threading the Needle
  • Making Progress

I am not a doctor . . .

. . . and don’t play one on TV. While I strive for accuracy based on my 40-plus years of living with scleroderma, none of what I write should be taken as medical advice for your specific condition.

Scleroderma manifests uniquely in each individual. Please seek expert medical care. You’ll find websites with links to medical professionals in Resources.

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