Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Sjogren's syndrome

Back to Reality

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As is always the case when I come back from abroad, it all too soon seems like a distant memory. I am trying to retain the clarity and calm I experienced in Japan. But it’s been a challenging week.

Last Thursday I had my regular pulmonary function tests (PFT) at Boston Medical, then saw both of my pulmonologists—one who manages my interstitial lung disease (ILD) and the other, my type 2 pulmonary hypertension. Usually these visits are routine, but this time, one of the PFT results concerned my ILD specialist.

Over the decades, PFTs have gotten harder. Results confirm a gradual decline in my lung capacity and function, but not to a worrisome degree. But this time, my lungs’ ability to transfer oxygen to my blood through the capillaries in my alveoli (oxygen diffusion) has dipped a bit more. So my specialist wants me to start using a steroid inhaler to arrest any further fibrosis. What made this more startling was that he suspects my Sjogrens Disease, rather than scleroderma, is the culprit. This is consistent with the fact that I’ve had significant issues with dry eyes from Sjogrens that have worsened over this past year.

I left with my head spinning. Steroids in any form, long term, are nothing to mess with. The idea that Sjogrens is now the stealth agent totally surprised me. When I got home, I wrote to my lead rheumatologist, and I hope to discuss all of this with him soon. I had a routine appointment with my local rheumatologist yesterday and reviewed everything. He said if the lung issues are due to Sjogrens instead of scleroderma, then it will be more manageable. Also, apparently, there are some new medications for Sjogrens that are due to be available within a year. So that was also encouraging.

Still, it is a lot to absorb. I’m grateful that my medical team is on top of my situation and helping me to get medication that will enable me to do as well as possible. But I am still processing what it all means.

The only constant in life is change.

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: Getty Images for Unsplash+

It’s Never Simple

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A few weeks ago, I ordered new glasses. It’s been a few years since I’ve updated my prescription, mainly because I’ve had so much trouble with dry eyes from Sjogrens that it’s very challenging to get an accurate eye exam. My eyesight is often blurred due to lack of tears, and when I put in drops, they blur again for a while. Really tough to get that Goldilocks measurement.

Then there is the issue of frames. I have worn Silhouette frames for years, which are rimless and very lightweight. I have to be extremely careful not to wear frames that put any pressure on the bridge of my nose, because that will accelerate the formation of calcium deposits on the cartilage, which eventually needs to be removed to avoid creating an ulcer. I’ve gone through this uncomfortable surgery several times over the years, and the last time, the ENT plastic surgeon told me it will be very difficult to do again.

When I ordered my new frames, however, the optician persuaded me to try a different lightweight brand called OVVO, which seemed promising. Only problem is that my face is small, and they have limited small styles. I picked one out that seemed good and hoped for the best.

I got the frames last week. There are a few issues.

First of all, the prescription seems to be off. I can see very well when I read—even fine print. But my distance vision seems worse than before. So I have to have another eye exam. I can swap out the lenses at no cost.

Secondly, however, the frames are a bit too heavy. It’s one thing to try them on without any glass lenses, and another to wear them with real lenses. Even as the optician ordered the lightest weight lenses for me, they add just enough pressure to be too much.

Finally, I realized that the shape is not that flattering. I was trying to decide under pressure, when I didn’t have enough time to really think it through. Fortunately I can trade them in for a better pair, or I’d be out a hefty fee.

So it goes. Never a simple solution with chronicity.

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: David Travis

Drips and Drops

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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

Out of Focus

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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

Sew-sew

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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.