Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

resilience

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

Bandage Break

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It’s taken nine months, but the ulcer on my left ring finger has finally healed—for now. I must add the caveat, because I never know when the skin will deteriorate again.

But for now, it feels great to be out of bandages on that finger. Last January, it became infected, I lost the nail and was in considerable pain. My go-to antibiotic failed to clear it, so I saw an ID specialist who put me on Levaquin, which is powerful but cannot be combined with Ibuprofin, which I rely on for my joint pain. It also comes with risks of tendon tears. Fortunately, that didn’t happen, but I ended up needing Gabapentin to manage nerve pain. Visits to our hospital’s Wound Clinic finally helped me turn the corner with some new dressings, but it has been one very long haul.

I saw my NP at the Wound Clinic about ten days ago and asked her advice for weaning my finger from its bandages. This is always a tricky step. If I go without too soon, my ulcers inevitably get worse. She encouraged me to try using a moisturizing cream (Eucerin is my initial go-to) without a bandage at night, and I finally worked up the courage to do that a few days ago. At night the risk is always for the uncovered ulcer to dry out and start smarting, costing precious sleep.

Fortunately, that didn’t happen, either. I’ve been able to keep off the bandage since the weekend, even did some housework and had no issues. And so, I’m grateful to be at this point, at least for the time being. Even with scleroderma, my skin can still heal, which is a miracle in itself. And any break from bandaged fingers is a much appreciated vacation.

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.

Threading the Needle

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I finished sewing another dress this weekend, just in time for Rosh Hashanah, the Jewish New Year, which begins today. It’s customary to wear something new for the holiday. As per usual, however, I started making this dress, which I’ve been thinking about all summer, just as the weather was turning cooler. It’s a lightweight, very silky rayon knit, beautiful but tricky fabric (also per usual—I always seem to pick what’s hardest to handle). Not autumnal material.

By a stroke of good fortune, however, Tuesday here is supposed to be warm again, for one day. I’m writing on Monday afternoon, fingers crossed. And if it is actually cooler than expected, I bought a long-sleeved silk shirt and leggings to wear underneath. So, hopefully, this will all work out as planned.

In any case, I picked the fabric both for its floral print and drape. It’s very soft and wonderfully fluid. Which made it challenging to sew. And so, I had to hand baste some critical seams in place before stitching them with my sewing machine. This included tacking down the inner waistband facing and the very, very, very long hem (it’s a wrap dress).

Hand sewing is the best way to achieve accuracy in a garment, but it is extremely challenging for me at this point. Not only because my fingertips have resorbed significantly, but also because I have so many bandages on my fingers. Which makes it hard to feel what I’m doing.

Not only that, threading the needle is tricky because of my very dry eyes, due to Sjogrens. No matter what I do of late with various eye drops, I cannot clearly see something as small as the eye of a needle, especially of a fine needle for sewing rayon. It takes numerous tries, using a pair of tweezers to hold the tip of the thread and turning the needle this way and that to see the eye. Eventually I get it threaded, but not without uttering a string of choice words.

And inevitably, when I get to the end of a particular piece of thread, but not quite, I manage to pull the needle too far and lose the thread. Which means threading it again. Especially on a very, very, very long hem. Which lets loose another long string of choice words.

So why do I do this to myself? Sewing is supposed to be a fun, relaxing hobby, right? I guess I’m just stubborn. I refuse to give up this skill that I’ve honed since I was a teenager. The results are never perfect, but it always gives me a boost to wear something I’ve made well.

I’m really pleased with the dress, and even if I only get to wear it once until the weather warms up again next summer, it’s a good way to start the New Year—stubbornly refusing to relinquish my ability to make something beautiful, especially now.

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.

Making Progress

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As I wrote several weeks back, I’ve restarted taking Pilates. My purple pool noodle adaptation for padding the reformer’s foot-bar did not work, unfortunately (the hollow core was too narrow to fit over the bar), but my instructor found a great alternative—black foam pipe insulation. It’s about an inch thick and just the right amount of squishy protection for my sensitive feet.

So, with that issue solved, I’ve been enjoying my weekly class. The routine varies each week, and sometimes, even though this is a basic level, it is a bit of a struggle. But overall, I am feeling better, my posture is slowly improving, and I’m able to manage more spring tension on the reformer. I can walk up stairs a bit more easily, too. My lower back remains achy and stiff in the morning and when I sit too long at my computer, but it eases up with stretches and movement. My cardiologist has always told me that you can strengthen your heart and muscles at any age, and he’s right (of course).

In fact, I find myself looking forward to class, and even contemplating going more than once a week. (Although after last week’s workout, I really needed a full week’s break to let my body catch up.) The best part of the routine, aside from a sense of accomplishment, is the endorphin boost from exercise. It really does help my moods and relieve some of the mental and emotional stress that is all too present these days.

My other reward, since the studio is near a Whole Foods market, is to pick up some granola cereal and organic fruit, maybe some fresh flowers, too, after class. The first time I went to the intro session (when my shoulder developed a weird tremor), I could barely walk to my car, let alone across the large parking lot to the store. Now, even after an intense workout, I walk the distance easily.

So, progress.

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: Katelyn Perry

Tornado Warning

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On Saturday afternoon around 4:15, I was lying on our living room couch and reading (not light reading, literally and figuratively, an 850+ page history of the Thirty Years War, but that’s another story), when my cell phone alarm went off. Really loud: a National Weather Service warning of potential for a tornado in our vicinity for the next half-hour. TAKE SHELTER! it advised, with more details in all caps.

Now, it was already dark and pouring outside, and we’d experienced a bright flash and loud crack of thunder a few minutes earlier. A severe storms was definitely passing through. But tornado watches are rare in New England, let alone a tornado warning. (Years ago when I lived in Illinois, I never got used to all the watches and warnings, and tornadoes were my dream metaphors for anxiety, but all that ended when I moved back east.) Being the more cautious of the two of us, I checked with Al, who was immersed in another activity, to be sure he’d heard the alert. He shrugged and went back to what he was doing.

I went downstairs with my heavy book to read. Since our daughters moved away, our basement family room is really now a junk room for storage, but there’s still a couch and decent lighting. It’s musty and needs a good clean-up, one of my perpetual to-do’s that I mean to get to this winter (there, I’ve put it in writing). Part of Al’s old vibraphone was lying on the couch, so I rolled up the wooden tone bars, moved them to the side, then picked up the strip of metal resonator tubes, to do the same, lost my balance and fell. Fortunately, I fell on a rug (mostly), but I banged my knee on part of the vibraphone. Which was not fun.

There’s a small, high window in the room, and it was quite dark outside. I could hear the rain, but no thunder or lightening cracks. So I read and checked the time and read and finally went upstairs at 4:45. Al was still immersed. I got an ice pack out of the freezer for my knee and went back to my history book on the couch. I felt kind of silly, but so be it.

Until I learned, not long after, that a tornado had actually briefly touched down in a suburb not far from us at exactly 4:15. Known as a “spin-up” or “land spout” by meteorologists, it was relatively small and lasted only a few minutes. But the damage was significant. In that brief visit, it uprooted and destroyed numerous large trees, including some oaks, which are among the sturdiest trees in this part of the country.

Which just goes to show that you never know what’s just around the corner, and that it’s worth being cautious when the NWS sends you an all caps warning about approaching storms. Especially in this time of severe weather, I’d rather sit in our musty family room for a half-hour than risk a tree falling on our house. If I get my act together, the next time this happens, our old family room will be a much more pleasant space to wait it out.

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: Greg Johnson