Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Sjogren's syndrome

The Allergy Factor

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It finally feels like spring here in Central Massachusetts . . . at least for a day. For the past week, all the flowering trees and shrubs in our neighborhood have bloomed, the maples are flowering, and the weeping cherries and Callery pears are already shedding petals, like so many pink and white snowflakes.

I always love the pastel colors of spring in the Northeast, but inevitably, all the pollen can do a number on my head. It used to be that I’d sneeze a lot and my eyes would water in response to the blossoming. This year, however, my spring allergies took a stealth turn.

Last May, as I’ve described here, I discovered scleral contact lenses to heal my very dry eyes, which were becoming more of an issue due to damage to my corneas from Sjogren’s. The lenses have helped a lot, although they’ve been harder to wear during the winter, when our house gets drier. But in recent weeks, I suddenly found that I could barely keep them in for a few hours, which evolved to only a few minutes last week.

As soon as I’d insert them, they would cloud over. Very frustrating. I wondered if my eyes were somehow rejecting them. Fortunately I was able to get an appointment last Thursday with the good folks at our local optometry college’s dry eye clinic. The students did their usual thorough intake. But when the supervising optometrist came into the exam room, the first thing he asked me was whether I had allergies.

Sure enough, that explained it. The build-up of histamines in my eyes combined with the fact that I can’t produce enough tears to dilute the resulting mucus caused a film to form on my scleral lenses. The answer so far is to try antihistamine eye-drops for about 10 days, and then try the lenses again. I’m glad to report that as soon as I started using the eye-drops, my eyes felt better and are no longer gucking up like they were before.

Hoping that I continue to make progress and can wear my lenses again. I’ll have to build up tolerance once more, but that’s certainly a manageable process. Meanwhile, the pollen mix is shifting. Maybe by the time I put in my lenses, the leaves will be fully unfurled.

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.

Visual Acuity

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It’s been about six weeks since I tried a pair of scleral contacts—special lenses that can help people with irregular corneas or severely dry eyes. In my case, the issue is Sjogren’s Syndrome. It’s gotten so bad over decades that my vision deteriorates by mid afternoon, as my eyes get dryer. Eye drops don’t seem to help that much.

So it has been a true miracle to discover the scleral lens option. When I wrote about this in May, my big accomplishment was being able to insert a sample pair with help from the wonderful faculty and students at our local college optometry clinic. A couple of weeks ago, I faced a second test: could I insert and remove them myself? The answer, after about a half hour of trying on each eye, was an amazing yes. Dr. S, who runs the dry eye teaching clinic, had given me 50:50 odds to set realistic expectations, and was even more excited than I was that I could do it.

With the lenses being fully refundable if I couldn’t manage or tolerate them on my own, I gave the green light to order a custom pair. Dr. S explained that fitting scleral lenses is an iterative process, like going to a tailor. There are many adjustments to make, in the loft of the lens above the cornea, which is filled with saline and moisturizes the eye, as well as the particular shape.

Last Friday, I went back to the clinic to try out my new lenses. This time, it took me only a half hour total to insert both, on my own, with guidance from one of the fourth year optometry students. The result, even as the left lens prescription needs to be strengthened and the fit of both lenses needs some tweaking, was nothing short of remarkable. I could see so much better.

At the end of my three-hour visit, at Dr. S’s request, I spoke to a group of the fourth year students about my experience with scleroderma and Sjogren’s. I’m always glad to teach, and it was the least I could do for the help and support they all are giving me. I’ll be back in a few weeks, when the next lens iteration arrives.

Meanwhile, I took the lenses home to build my skills with inserting and removing, and to help my eyes begin to heal. And I can see clearly—at a distance. In fact, I can see more clearly than I have at any time since I was a child who didn’t need glasses. Not only that, my eyes can tolerate a windy day and bright sunlight, which has bothered me for years due to dryness.

But it’s not a slam dunk. While it’s possible to create scleral lenses with an adjustment for bifocals, the result, I was advised, is often not successful. So these lenses only correct my myopia. I need reading glasses to see up close. Unfortunately, the lenses blur my vision for reading and the computer more than my natural sight.

Drugstore reading glasses present one solution—cheap, easy to get. But if you’ve ever used magnifying reading glasses, you know, as I’ve discovered, that when you turn your head, everything gets distorted. They also are clunky. I’ve found some online resources that I may try, with better options. I’m also debating whether to repurpose old lightweight frames as prescription reading glasses. This is all still new, and a lot to sort through.

Bottom line: While I was hoping to get out of glasses altogether, that’s actually not the main point of scleral lenses. They can save my eyes from further corneal damage. And I’m finding, on Day Two of wearing them on my own (four hours a day is the initial limit as my eyes adjust), that I have more tears after removing them for the day. I’m not sure why this is the case, but it’s an unanticipated plus. I’m also discovering how much I’ve been missing.

To say I’m grateful is an understatement.

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: Amber Flowers

Line of Sight

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A few weeks ago, when I had my eyes dilated during my annual exam at a local optometry college, I learned some surprising news. Despite the fact that I have very dry eyes from Sjogren’s Syndrome, I might actually be able to wear contact lenses.

These are not your normal contacts, but scleral contact lenses, typically prescribed for people with irregular corneas. They are gas-permeable, but larger and lofted higher than regular contacts, essentially floating on a saline solution over the entire cornea and resting slightly beyond the iris on the white of the eye. For people with severe dry eyes, like me, they can provide constant lubrication.

So, I decided to find out more. Last Thursday, I went back to the college—which operates a teaching optometry clinic—and met with one of their dry eye faculty specialists, along with a fourth year student. Another fourth year student ended up joining us, because she had written her first year research paper on scleroderma.

There were two major questions to answer: First, could we actually get a pair of sample scleral contacts into my eyes; second, would my hands enable me to do this for myself? The lenses are inserted using a little plunger. You fill the lens with solution and then bring your eye down to it. Not an easy feat. It took three tries on each eye by the specialist, with me holding down my lower lid and him holding the upper lid and the lens-with-plunger, to get it in. But we did it.

Miraculously, I could see more clearly, just because of the moisture being trapped by the lenses, even as they were not prescription. However, the big challenge is that my upper eyelids are abnormally thick from scleroderma. Hard enough for two people to insert the contacts. Also, I could feel the lenses underneath my upper lids when I blinked—possibly because my eyelids are less flexible. And they burned a little, possibly because the whites of my eyes were drier since I didn’t need to blink as often as I normally do.

We were all excited that I could actually wear them, but this is far from a home run. The specialist gave me a 50:50 chance of eventual success, but wanted to go the distance if I was willing. There are a lot of customized adjustments he can make to the size and shape of the lenses, as well as a special coating that will keep the outside wetter and less irritating to my inner eyelid. There are also a lot of adaptive tools to enable me to insert them myself. But we’ll only know with the real thing.

Fortunately, with these lenses, there is a try-out period, and if they don’t work, I could return them for a full refund as well as a partial refund of the exam fee. The clinic staff will research whether this is covered by Medicare and my Medex plan. I have no idea if it will be successful, but I feel like it’s worth a try, because if it does work, my eyes will be healthier and vision much clearer than I thought possible.

In the meantime, the students are learning a lot from our meeting. As the lead student said to me, “I have a million questions going through my head.” “Fire away,” I answered. At the very least, whatever happens, he’ll know how to better diagnose someone with my complex issues in the future. Well worth the time.

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: Siora Photography

Nosebleed Section

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There are many aspects of last week’s writing retreat in Maine that were wonderful: intense focus on my novel, no-one to answer to but myself, beautiful beaches to walk nearby, quiet. I made real progress and hit all my revision goals. There is still work to do, but in four-and-half concentrated days, I accomplished what would have probably taken me two months. By the time I left my little rented cottage on Friday morning, my brain was fried, but I was elated.

That is not to say, however, that the trip was free of interruptions. There was the SNAFU with non-functional WIFI for two days, which turned out to be mostly Spectrum’s fault. (Fortunately I had downloaded my manuscript from the cloud prior to leaving.) There was also the delivery of a new stove and refrigerator, which had been delayed by the pandemic. There was the owner’s angst over grease stains on the new kitchen rug, due to the aforementioned delivery. My experience writing in a news room decades ago came in handy, and I was able to ignore the commotion in the kitchen and still write while all that mishegas was going on.

Then there was the nosebleed. From time to time, because my nose is quite dry due to Sjogren’s Syndrome, which can often accompany scleroderma, I experience nasty nosebleeds. I’m careful with saline sprays and rinses to help keep my nasal passages moisturized. But it can get the better of me. The weekend before I left, I had a gusher on Sunday that took at least a half-hour to bring under control. Then, the Saturday before I left, I had another spontaneous nosebleed from the back of my nose, which took at least 45 minutes to stop.

Worried about the trip, I called my clinic to see if I should go to urgent care for an exam. The nurse took copious notes and checked with the covering physician, who said there was no point in being seen, since the bleeding had stopped, but to be sure to keep my nostrils moisturized. He said to beware of saline, which can also be drying (this I’ve also learned from experience), but added a tip: use a small amount of Vaseline inside each nostril. This sounded rather odd to me. I thought it might affect my breathing or sense of smell. But I decided to try it out.

To my amazement, the thin coating actually felt good. As I packed the next morning, I made sure to have my new little jar of Vaseline, plenty of cotton swabs and tissues, plus cotton balls and decongestant spray if I had another bad bleed. I was relieved to drive all the way to Maine, unpack, shop for food, and make supper without incident.

Just as I was doing my dishes, however, I suddenly felt the bleeding start again in the back of my right nostril. Though not quite as bad as the previous day, which involved both sides, it once again took at least 45 minutes to control. I was not happy. After calling Al to discuss options, and calling my clinic after hours, I was able to speak once again to a nurse who said if it happened overnight, I’d need to go to the nearest ER (15 minutes away in Portland). If I had another bleed in the day, I should go to urgent care. And when I got home, I should call my doc for an ENT referral.

I called Al back and told him I was going to power through this. “No way I’m going to let a f-ing nosebleed stop me from doing this after thinking about it for years and finally getting here!” I said. Thank goodness, the combination of Vaseline and sea air seemed to do the trick. Eight days later as I write, even in drier air back home, I haven’t had another episode.

And here’s the thing: I’ve had Sjogren’s for decades. I’ve seen ENTs before. I’ve dealt with many nosebleeds. No one ever told me about the Vaseline. If you have the same problem, I hope it helps.

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.

Brain Fog

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I forgot to write my blog for Tuesday morning. Completely slipped my mind on Monday, my usual blog-writing time, because I didn’t write it down in my Monday To-Do list. Usually, I organize myself in my bullet journal with a task list for the week, which I then break down for each day. But I’ve been busy with a lot of deadlines hitting at once, and I didn’t do the weekly task list, so I didn’t remember to write my blog.

Which is why, if you’re used to seeing this pop up in your in-box on Tuesday, it wasn’t there. Easy enough to “write it off” to aging, of course. But I had an interesting conversation with my Boston Medical rheumatologist on Tuesday that made me wonder. I was telling him how I feel that my memory just isn’t the same (this was before I realized I hadn’t written my blog, which gave me today’s theme . . . ).

Word-finding when I’m stressed has been hard ever since I hit menopause years ago, so I’m used to that. And we all know what it’s like to go into a room to get something and forget what it was. But now I’m finding that I can think of something I want to do and go to write it down (to remember), but the actual act of writing it makes the idea vanish for seconds or even minutes, sometimes. This is not only frustrating, but for someone who writes for a living and for my art, it’s upsetting. Fortunately, when I am thinking at the keyboard, the words continue to flow easily onto the screen.

Long-term memories are also getting harder to retrieve. Some of this is age, of course. But my maternal grandmother used to tell me stories from her twenties that were vivid with details. I had the same capacity for years, but now it just seems harder to recall long-ago details.

My rheumatologist tells me that brain fog is common with autoimmune disease. In the forty years I’ve had scleroderma, I never knew this. (Or if I did, I forgot!) Some of this has to do, in my case, with how my circulatory system is just not as efficient as it used to be due to the disease, so my brain isn’t as well-profused by blood. I also have Sjögren’s Syndrome as a secondary diagnosis, which causes dryness in my eyes, nose, and mouth, and apparently can also cause brain fog.

I haven’t changed medications in quite a while, other than eliminating a few that weren’t really helping me and cost way too much under Medicare. So this isn’t a reaction to drugs.

What to do? It comes back to the basics: get enough sleep, eat a balanced diet with foods high in omega-3 fatty acids and antioxidents, and exercise. I’m pretty good at the first two, and really need to improve at the latter. Over this past week, I barely got outside because of the cold. So on Tuesday afternoon, after my telemed call with my rheumatologist, I took a brisk walk.

A few hours later, when I finally wrote up my week’s To-Do’s, I remembered that I hadn’t written my blog. So, here I am, a day late. But at least I got here.

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: Phillip Belena