Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

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Sympatico

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It definitely feels like fall this week in Massachusetts. A few days ago, it felt like summer. But now the trees are really starting to change colors as the days grow shorter and temperatures hover in the 50s.

I find myself feeling more tired, which always surprises me when cooler temperatures finally settle in. It’s like my body senses the approach of winter and wants to prepare for hybernation. My hands start turning blue more often, and I just want a nap.

My bonsai is responding to the seasonal shift, as well. When I set it out on Sunday to catch the sun, its leaves soon drooped in response to wind and chillier air. A Brazilian Rain Tree, it prefers tropical weather and humidity, but can still flourish in the Northeast, just not when temps drop below 45°F.  I’ve been bringing it inside at night, but now it seems to be imploring me to keep it in the kitchen when temps drops below about 60°F.

We are definitely sympatico.

I brought its little table inside, too, so it can enjoy the midday sunshine through the south-facing sliding glass door off our back deck. Now I just need to get a tray and fill it with gravel and a little water, to place underneath its pot. Evaporating water will help to keep it humidified when we turn on the heat.

I know it may lose all its beautiful foliage at some point this fall. So far, however, it remains emerald green and continues to form new leaves and stalks. Though I’ve cut back on watering it daily, it keeps growing.

Even as my fingers turn blue, I guess I may have a green thumb, after all.

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.

Ulcer Fiends

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It has been pouring, a chilly rain, all day Monday. Fall is definitely here. What amazes me, though, is that I only have one digital ulcer—on my left thumb—that requires a bandage. At this time of year, that’s a minor miracle.

As I’ve written elsewhere, spring is always my worst season for ulcers on my fingers. This summer, however, was a challenge, as well. In the past six months, I have been on antibiotics at least three times, for about a month each time. That’s how long it takes the infection to clear. May was the most challenging month, with multiple fingers competing for attention.

Fortunately, I caught the infections before they became intolerable. One set required two different antibiotics to clear up completely. Perhaps it’s because I just finished the last round of antibiotics only a few weeks ago that my fingers are in better shape right now. Or maybe because I’ve been using medical grade honey to treat them, which both has natural antibiotic properties and also gently debrides dead skin. I was getting concerned about my left thumb, because it appeared that bits of calcium were buried in the ulcer and popping out, impeding its ability to heal. That situation has finally resolved, for now.

Writing about my sole bandaged thumb certainly risks tempting the Ulcer Fiends. They will be back to stage another sneak attack, as is their way. But I hope they’ll give me a break for a few months, at least. Maybe give me time off for meticulous hand care? A pass for layering up with sweaters and hand warmers? A chance to enjoy a little freedom from bandage adhesive? I promise to always use hand sanitizer when I’m out and about and a good skin moisturizer every night.

Are you listening, Ulcer Fiends? Probably not. Until we meet again . . .

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: K. Mitch Hodge

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

A Tale of Two Visits

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I had two visits with my Boston Medical Center physicians last week—one, in person with my new rheumatologist, and a second, via video chat, with my cardiologist. Both had been scheduled months ago, but it afforded me an interesting opportunity to compare the two modes of doctor’s appointments.

My in-person visit went well. I was very glad to see my doc and have a good long conversation with him. He gave me plenty of time to discuss my health and any concerns, and was able to answer all my questions. It was more of a schmooze than a strict, all-business visit, and I think being there helped to make that possible. Having that time—we spoke for about an hour, with only a brief interruption—made the commute worth it.

The downside was just the stress of being there, with all the Covid concerns. First off, I had forgotten that the parking garage requires you to touch a button to get your parking ticket. I did this with gloves on, but how many people don’t? It’s a virus magnet.

There was the inevitable challenge of door handles, elevator buttons, and using a public restroom. I got past all those hurdles with extra vigilance and disposable gloves, which I kept on until I went into the exam room. I used plenty of hand sanitizer, with and without gloves. The medical center checked temps and symptoms upon entry, handed out masks with a pair of forceps, and limited occupancy of elevators and waiting rooms. It simply was not as crowded as usual. And the big test, one week out, I have no Covid symptoms, thank goodness. So, that’s a huge relief.

On Friday, I spent a half-hour on a video chat with my cardiologist, whom I’ve been seeing for decades. The only drawback was a slight hiccup in the video signal that almost kicked us off to a phone call, but fortunately, the signal stabilized. We had a very thorough conversation, which was as good as if I had seen him in person. And no stress of driving or dealing with the public space.

So, given the choice—seeing as I’ve now had a good personal visit with my new rheumatologist and made a real connection with him—I think I’d prefer sticking with telehealth until I’ve had the vaccine and am in the safe zone. The stress of Covid vigilance is intense for me. My blood pressure at BMC was much higher than normal, and that’s probably the reason (back to normal at home).

And it sure beats traffic.

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: Jason Dent

Touchy Choices

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I’ve been venturing out a bit more, lately, for various appointments. Wearing a mask in public is both required here in Massachusetts and a no-brainer, for my own health and those around me. But I’m debating whether I always need my second level of protection against Covid: disposable gloves.

I have a stash of gloves that I use for cooking, because I learned long ago that touching raw food with bare hands is an invitation to infected ulcers. So now the question is whether I need to wear them whenever I go out to a place where I may have to purchase something in Covid Time.

Here’s the problem: Inevitably, with credit card terminals, you have to push a button on the screen or use the pen device to do same. I really, really don’t want to touch any surface that’s been touched by so many fingers. Even the most conscientious sales clerk doesn’t sanitize the terminal regularly.

My default up to now has been to go for the extra protection and wear gloves. But sometimes it seems like overkill, and it’s also not great from an environmental standpoint to use all of those disposables that will live forever in a landfill. So this Monday, when I had a meeting that didn’t involve any financial transactions, I skipped the gloves. When I opened the doors to the office building, I pulled my sweater sleeve over my hand so I didn’t have to touch it. I was vigilant about not touching other surfaces. And when I was all through and back in my car, I used hand sanitizer.

Here’s hoping I didn’t miss a step. The whole thought process for a simple trip beyond my home safety zone requires so much concentration, being very mindful of everything I touch to avoid the virus. On the one hand, given my Covid protection protocols, I’m probably at less risk than ever of picking up an infection in one of my digital ulcers. On the other, I’ve still had a few minor infections that I could handle with topical ointment, and one major infection several months ago from having to go gloveless to a medical appointment in a local hospital, per their regulations.

So it goes. I hope you, too, Dear Reader, are doing all you can to keep yourself and your loved ones and anyone else with whom you come in close contact healthy and 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: Emin BAYCAN