Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Sjogren's syndrome

Routine Exam

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Monday afternoon found me in my hometown rheumatologist’s office. I see her twice a year, so that I always have a specialist nearby who knows my history, in case I need help pronto without driving into Boston. She is chair of the rheumatology department for our local health care organization, very thoughtful, compassionate. She also respects my long experience with scleroderma. Mostly, she listens.

We went over the usual check-list: Blood pressure looks good. How are your hands doing? Any prescriptions need refilling? Has anything changed? I reminded her that I needed her to schedule pulmonary function tests at the hospital, because my Boston Medical pulmonologist needs them when I see him in May. She sent in the order.

When she asked about my breathing, I told her I’d had an echocardiogram at Boston Medical a couple of weeks ago. She looked in MyChart. Although my exams from both local and Boston docs are visible in the online medical record, she could not access the Boston test results, something to do with HIPPA regulations.

Fortunately, I was able to get into my BMC account on my phone and pull up the information for her to review (one of those times when an internet search came in very handy). All normal, pulmonary pressures stable. I asked her about medical terms in the report: What is mild tricuspid regurgitation? Nothing to worry about, everyone has some, the echo is very sensitive. Nice to get that explanation in real time.

I filled her in on the mammogram kerfuffle. I asked her if the fact that I have some calcification in small vessels in my left breast is any indicator that more calcinosis in breast tissue could occur. She shook her head. Never seen that in 30 years of practice. I’ll take it.

I shared the good news that after several months of calcium pits emerging from my right thumb, the fifth shard finally emerged on Sunday, and it seems to be done, for now. (When I pulled the last pit out that evening, I showed Al: Look, it’s just a hole! And the hole, per usual, is finally closing on its own.) That must feel a lot better, she said. Yes, definitely.

I told her about my struggle with dry eyes from Sjogren’s and the great help I’m getting from my optometrist at the local college dry eye clinic. When I saw him last week to report back on new eye drops he’d given me (successful) and have him replace the dots on my scleral lenses that indicate how to orient them in each eye, he reminded me that I need to start allergy drops again, that it’s going to be a bad allergy season this year—the likely reason my eyes keep getting goopy.

We discussed the trade-offs of an infusion for osteoporosis (which I have had for years, like my mom and her mother). Despite not having infusions for over a decade, my bone density remains stable. My original rheumatologist, the one who saw me when all my symptoms erupted, had felt the infusions weren’t really necessary if bone density hadn’t changed.

At issue is whether those infusions can exacerbate bone resorption in my teeth. The unanswered/unaswerable question is whether the risk of losing more teeth and getting very expensive implants in a difficult procedure is worse than the risk of bone fracture if I fall. She said she would defer to my dentist. So I need to follow up with him. (And check the latest research about the effectiveness of bisphosphonates in reducing bone fractures. The answer is—it depends. Here’s info from NIH.)

And that was how we left it. It’s a lot to keep track of, but after all these years, it really does feel routine. Thank goodness, I’m holding steady.

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: Mathew Schwartz

Dry Spell

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Dealing with dry eyes in a Northeast winter is always a challenge. Even as ours has been milder, so far (knock on wood—or not, given that the planet is warming) there’s just no escape from dry heat indoors, regardless of source. Some solve this with a humidifier, but I’ve found them difficult to keep mold-free.

My solution for my Sjogren’s for the past year-and-half, in additions to Restasis® eye drops, has been scleral contact lenses. I’m very fortunate to live a ten-minute drive from a college that specializes in health sciences, including optometry, with an excellent dry eye clinic. Dr. S, who teaches the optometry students, is a fountain of creative solutions for my eye problems and has been my guide and cheerleader as I’ve learned how to wear the lenses.

So, when I showed up for my annual check-up last week, he and the third-year student who attended me were concerned that I’m once again struggling with my dry eyes, despite the scleral contacts. The issue this time is not allergies, as it was last spring, easily solved with antihistamine eye drops. Even with the lenses inserted, the part of my eye not covered by the lenses dries out too quickly, due to the dry air at home. I need to use saline drops frequently to keep them moistened, so I’ve taken to only wearing them a couple of times a week, when I am sure I can use the drops often. But when I go for a couple of days without wearing them, my eyes get gunked up and my vision, bleary. Not fun.

Dr. S listened carefully, and then came up with another brainstorm. He had samples of a new nasal spray that is designed to treat dry eyes, called Tyrvaya®. You read that right. A nasal spray for dry eyes. There’s a trick to spraying it—you have to aim it inside your nostril toward your ear. And definitely don’t inhale, because it really stings. But miraculously, after trying this for several days, I find that my eyes are producing more tears—enough, in fact, that I can go much longer wearing my contacts without the saline drops.

Fun fact, as part of this education: Even for those without dry eyes, we all blink less when staring at a computer screen. For me, this lack of blinking becomes a big issue, exacerbating my dryness. Dr. S had another ingenious solution: an app that reminds you to blink. So I’ve added the Blinks app to my iMac. Basically, it’s an image of an eye that pops up according to the schedule you set, and blinks, then disappears. I’ve just started experimenting with it, so I cannot yet assess, but I pass that along as an option.

I don’t yet know what Tyrvaya costs once the samples run out, and I’m betting it will involved more mishegas with insurance coverage. But so far, it seems well worth trying. Will keep you posted at a later date about my progress, Dear Reader. In the meantime, remember to blink!

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:  Petri Heiskanen

Gotcha

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So, we were supposed to go on a 10-day vacation over the past week, at long last flying across borders to savor another culture. But Covid had other plans.

Three nights before we planned to leave, Al started coughing. Not your normal clear-the-throat cough, but a deeper, barking cough that woke me up a few times. Just to be on the safe side, the next morning I gave him a rapid test. The T line turned purple even before the C line emerged. Not good.

After I got over being upset (I was quite upset) I realized that we should just try to reschedule the trip. Which, by the end of the day, I had successfully done. I had purchased Covid travel insurance, and I am sending off a claim for the additional cost of the switched airline tickets this week. I don’t know if it will be honored, given that I didn’t actually cancel the flights, but it’s worth a shot.

Meanwhile, Al and I both had PCR tests. His came back positive the next day, and mine, negative. But by Friday, the day we were supposed to leave, I was starting to feel crummy. Two negative rapid tests were not much consolation. Sure enough, Saturday morning my rapid test was definitively positive.

This all happened despite our both being fully vaccinated and double boosted. As has been widely reported, the current dominant strain of Omicron, BA.5, is highly contagious and can evade some of the vaccines. We have no idea how Al picked it up. And even as we did our best to mask around each other and for Al to isolate, it didn’t matter. I still got it.

Fortunately, Paxlovid, the anti-viral medication for Covid that is provided at no charge by the federal government, is a game changer. It made a huge difference for both of us. There are reports of side-effects and also significant contraindications for certain medications. I had to stop two of my meds in order to take the five-day course. The only side effect that I was aware of was the bitter aftertaste it leaves in your mouth. But that is a very small price to pay for stopping Covid from replicating itself in my body.

Before Paxlovid, I was experiencing aches, chills, overactive Raynaud’s, a lot of congestion plus very runny nose, and a really sore throat (like severe strep, hard to swallow because it hurt so much). The day before I tested positive, I also experienced a sudden bout of vertigo, and until the Paxlovid took hold, migrating pins and needles, not unlike shingles. Oh, and my heart rate sped up and my arrhythmia kicked in. No fun.

Within 36 hours of starting the Paxlovid, all of this began to ease up. It felt miraculous. There is no doubt in my mind that if I hadn’t taken all the precautions of vaccines and boosters ahead of this, I would have been in much worse shape. And the Paxlovid really helped to turn things around. Risks of long Covid are real, especially when my immune system is already compromised from both scleroderma and Sjögren’s Syndrome. Even if I experience a Covid rebound (which can happen after stopping Paxlovid), I’m confident that another five days on Paxlovid is worth it, and quite manageable. So far, so good.

Happily, we are both on the mend. Fatigue is still a factor, but not as bad as previously. I tested negative with a rapid test eight days after my positive test. PCR results may remain positive for a while because they pick up fragments of the virus, even when you’re no longer really contagious.

In any case, I intend to wear my mask in public long after I need to (five days past the five-day isolation period) according to post-Covid protocol. Just to be careful. I do not want to get re-infected, especially in the weeks leading up to our rescheduled trip.

I hope you are well and free of all this. I am grateful for all the medical advances that enabled me and Al to get better relatively quickly and never get severely ill. Covid is not to be messed with. Stay safe.

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: Gratisography

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