Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Gutsy

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My gut has not been happy, of late. I simply don’t process food easily, and I often have to go to the bathroom a lot during the day. Last week, this had gotten to the point that, despite multiple trips to the john that morning and yards of toilet paper,  I left the house only to have to run back inside for one more bout of diarrhea before I could get on the road to Boston for an appointment with my rheumatologist, Dr T.

This is a common issue with scleroderma. As Dr T explained (once again, because this is not a new conversation), over time the vascular supply to my small intestine has decreased, which slows the peristalsis (muscle contractions) that move digested food through my system. As a result, good bacteria that normally resides in the gut overgrows, and that’s what causes all the runs to the bathroom.

Ironically, the solution is antibiotics. Normally, antibiotics can cause diarrhea because they destroy the good gut bacteria along with whatever bad bacteria they’re aimed at. But with bacterial overgrowth, certain antibiotics can bring the issue under control.

I’ve actually noticed this whenever I end up taking antibiotics to manage an ulcer infection, or, most recently, when I had a dental implant and took Cipro to mitigate against infection. Sure enough, my gut issues improved.

Turns out Cipro is one of the antibiotics that helps with gut bacterial overgrowth. So Dr T wrote me a prescription for 10 days. Literally within hours of taking the first pill, my gut began to calm down. What a relief.

I also asked Dr T for a referral to a GI specialist. I haven’t had one in years. I think the last one retired or moved and I wasn’t as concerned as I am now to have that end covered. Fortunately, BMC has gained a new GI doc who knows scleroderma, too, which is what I was hoping for. Now it’s just a question of how long I’ll need to wait to get an appointment. This problem isn’t going away, but at least I have a stop-gap treatment in the meantime.

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: Janelle Hiroshige

What Happened to Your Hands?

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Recently, a young boy was studying my fingers. “Why do you have so many bandages?” he asked.

“I have problems with my hands,” I answered. For a pre-schooler, that seemed the appropriate explanation.

He looked concerned, or perhaps afraid. “You don’t have fingernails,” he said.

“No, I don’t,” I said. Not exactly true. I have a few left, but they certainly don’t look normal, more like moon crescents. He seemed perplexed, but then he got distracted and that was the end of our conversation.

A friend who overheard our chat checked to see how I took it. “Kids say what everyone else is thinking,” I said. “He’s just curious.”

It really doesn’t bother me anymore when people ask, after all these decades of living with odd-looking hands and way too many digital ulcers, especially since my hand surgery eight years ago that necessitated some partial finger amputations. Most people who know me don’t pay any attention to my hands. When a stranger (often a cashier or someone else I’m handing something to) asks, Oh, what happened to you? or clucks about my bandages, I just take it as a mix of natural inquisitiveness and compassion.

My standard answer is something like, “I have chronic ulcers.” I don’t bother to go into an explanation of scleroderma, because the occasion doesn’t call for a lengthy discussion, and I’d rather keep it simple. Sometimes the person will ask a follow-up, Does it hurt? To which I say, “Sometimes.”

I realize that such inquiries can be much more challenging for those with severely tightened skin. Before my skin relaxed somewhat on my face, hands, and forearms (a miracle, truly, as it was beginning to get uncomfortable to blink in the early years, and the skin on my hands was like leather), people who knew me casually would ask with concern whether I’d lost weight. They sensed something was different, but couldn’t figure out what.

I was very self-conscious during that first decade. When I began to see wrinkles in my forehead again after several years on penicillamine (a since-discredited treatment because research samples involved too few patients to prove a positive response, but I believe it saved my life), I was thrilled. But my hands were already deformed by then.

It wasn’t until I began writing this blog in January 2012 that I started to overcome all the embarrassment that I felt about my appearance. There really is so much more to living with a chronic, deforming disease like scleroderma than your looks or your diagnosis and treatments, although I don’t in any way mean to minimize the very real physical and emotional pain and stress of literally being trapped in your own skin, when scleroderma takes its most virulent form.

What I have learned in my nearly 45 years of managing this disease is that people take their cues from you. The more accepting you are of yourself, the more accepting they are of you. It’s a journey. I’m grateful to be sharing it with you.

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: Alex Skobe

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

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.