Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

hands

Sew On and Sew Forth

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Finding truly warm, affordable clothes with some style is not all that easy. Ever on the lookout, I find that too many offerings that look warm are actually made with synthetic fibers, like polyester, acrylic, or nylon, which don’t really keep you warm and can trap perspiration, making you colder. But good wool garments are expensive.

So, I decided my best alternative was to sew myself a sweater jacket for winter. A few months ago, I found an easy pattern and some cranberry-red alpaca knit fabric on sale online. Next step was to get the fabric dry-cleaned, to preshrink it (this prompted the dry cleaner to request my signed understanding that the fabric might ravel in the process—which didn’t happen).

But then the fabric, now ensconced in a plastic dry cleaner bag, lay folded in my office. For weeks. The problem was two-fold: I didn’t have time/couldn’t make time to work on the project due to holidays et al., and, more importantly, I have been wrestling with some very sensitive ulcers on both thumbs and my right ring finger. No way to cut out the pattern, figure out any adjustments, cut the fabric, and sew it up when I really couldn’t handle scissors or pins.

That is, until this past Sunday, when my hands had finally progressed enough, Thanksgiving and Hanukkah celebrations were past, and I decided to just get down to it. Cutting the fabric was still hard, despite using spring-loaded shears, but I made a lot of progress, especially because I could use my serger, which sews, trims, and finishes seams all in one step (but you really have to pay attention, because seams can’t be resewn easily!). Wool is also very forgiving, with any wobbles in the seams (due to weaker hand control) easily steamed and straightened. Still another sewing session needed to finish it, but I’m pretty pleased (ever the perfectionist) with the outcome.

And, it’s delightfully warm.

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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Winter’s Breath

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The city swept our streets last week, clearing mounds of brown leaves that neighbors had raked or blown into piles along the curb. Then the wind blew and rain fell and more leaves speckled lawns and sidewalks and pavement.

The trees always win, and that’s fine with me. Fallen leaves return nutrients to soil. And I like their sound and earthy smell as I scuffle through them. A child’s pleasure, it’s one of the rewards of forcing myself out the door to take my walk when it’s colder and the sun sets too early. My neighbors wear warm coats and wool hats as they walk their dogs. We all feel winter’s breath.

My fingers, too, are registering the approach of colder weather. The heat is on in our home, and my skin is dry. I’m up to four digital ulcers again, after a really long stretch of only one or two over the summer and well into fall. For now, no infections, although I’ve been on and off antibiotics for months, and my right thumb is not happy with my typing.

This morning I see my dentist, who had a new flipper made for my missing tooth. I’m hoping it will be easier and sturdier than Version One, which I’ll also have her check. Since I got my implant two weeks ago, the flipper no longer fits. I have yet to decide if this false tooth was worth the money, but I also have at least two more months to wait until I can get my crown and have all my teeth again—that is, assuming that the other lower front tooth, which is also resorbing, can stay put for a while longer.

So it goes. Managing my scleroderma is always a process of fine tuning every day. After 40 years, it’s just part of my routine—time consuming, but mostly white noise. I prefer to focus on living.

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: Johannes Plenio

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