Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

finger ulcers

Clean Hands, Warm Heart

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Somewhere I once read that Donald Trump’s aides carry alcohol wipes for him, so he can clean his hands after every handshake. I don’t know if it’s true, but he has a reputation as a germophobe, so I wouldn’t put it past him.

sanitizerMuch as I don’t want to have anything in common with The Donald (although the equivalent of even a small percentage of his fortune would certainly be nice), I, too, am in the habit of cleaning my hands frequently when I’m in public.

In my case, however, I have a good excuse. I have far too many digital ulcers that provide super highways for bacterial infections, if I’m not careful.

So I am. Careful. Almost to the point of being obsessive/compulsive.

Recently I’ve been using mass transit more often when I have commitments in downtown Boston. Driving and parking can take up to an hour-and-a-half each way, sometimes even longer, depending on traffic. Taking the train enables me to get work done instead of wasting all that time driving. It’s also much more relaxing. But I never travel without my little bottle of antiseptic hand-cleaner.

I’m always cognizant of when my hands touch surfaces that many other hands have touched—like door handles between train cars or escalator handrails on the way to the T (Boston’s subway) or those straps or metal poles that you need to grab in order to stay upright when the subway jolts and jerks. When I arrive at my destination, out comes the hand-cleaner.

Other points of contact that make me wary: ATM consoles, those ubiquitous ball-point pens that are always handed to you for signing your credit card slips, doors to public buildings and magazines in doctor’s waiting rooms. Once I’m back in my car, out comes the hand-cleaner. I also keep my own pens at the ready.

Public restrooms, of course, are high on the list. I recently saw a video clip of The Doctors talk show that discussed where the most germs reside. It’s not the first stall, by the way. We all avoid that one. It’s not even the toilet seat. It’s the toilet paper dispenser. Think about it. Then there’s the door handle on your way out. So, my latest solution is to pour some hand-cleaner in my palm as I leave and rub it into my hands as I walk. (Washing my hands with soap and water doesn’t work because I have too many bandages.)

If all of this sounds a bit paranoid, well, maybe so. But I have had far, far too many serious bacterial infections in my fingers over the years. The pain can be excruciating. Sometimes I have ended up on IV antibiotics for months. Thankfully, it’s been a long time since that’s happened, and part of the reason, I am certain, is that I’m so careful.

My method is not foolproof. And I go through a lot of hand-cleaner. But the bottom line is that it certainly doesn’t hurt. And as long as I’m not insulting anyone by whipping out my hand-cleaner after a handshake, then why not? Minimizing infections—and excessive use of antibiotics—is well worth being a tad obsessive. Just because you’re paranoid doesn’t mean that bacteria isn’t out to get you.

Photo Credit: coolmikeol via Compfight cc

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.

Futurecast

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I wore my long winter coat this weekend. Not the heavy-duty one, but the medium weight, good-for-when-it-gets-below-50F-degrees-coat. And a warm hat. And gloves.

Book of SnowflakesIt’s only the beginning of October, but I’m already pulling out my sweaters and sweatpants, fleece vests and scarves, wool trousers and skirts, as the temperature sinks. This is always the time of year when I feel a bit self-conscious about bundling up while my neighbors are still walking around outside in windbreakers. But I’d rather be warm and keep my hands from turning purple and numb.

According to the Old Farmer’s Almanac website (is it just me, or does that sound like an oxymoron?), this winter in New England will be “much colder than normal, with near-normal precipitation and below-normal snowfall.” Looks like we’re in for a bit of snow before the calendar year is over, then just a lot of frigid temperatures until mid-March.

That is, if you believe the Almanac’s predictions. They claim 80 percent accuracy.

We were discussing this with family and friends at Al’s cousin’s home over the weekend. Those who commute by car and park on city streets were rooting for the Almanac—less to shovel sounded pretty good after last winter’s snow emergencies. For me, however, the words “much colder than normal” are more forbidding than snow storms (until the snow piles so high there’s nowhere to put it).

My winter weather trepidations are tempered by living in a landscape so romanticized by Currier and Ives. New snow is beautiful. It’s clean and sparkly and magical. I always enjoy the mystery of the first snowfall of the season, how it transforms trees into spun sugar.

Nonetheless, snow, by definition, means the temperature is below freezing, and my body just doesn’t adjust easily to the shift. We’re not there, yet, but as I walked Ginger, our 16-year-old golden, around the block on a sunny, crisp fall afternoon this Sunday, I could feel the season’s change in the wind.

Was it still, technically, summer just about a month ago? I have more digital ulcers, more bandages. I’ve turned on the heat pumps to warm the first floor of our home while I write in my small office, just off the living room. I’m wearing long sleeves and a warm cardigan.

Snow or no snow, the idea of “much colder than normal” sends shivers throughout my body. Nothing to do but make sure I have enough layers and brace for whatever winter weather lies ahead. At least we still have the best of the fall foliage to enjoy for the next couple of weeks.

Would I ever move to a warmer climate? I don’t know. I love my home, my community. Much as I struggle with the temperature shift each fall (spring brings its own unique challenges, too), I love all four seasons here.

So, pile on the sweaters and boil up the oatmeal. Colder weather? Bring it on.

Image Credit: Illustrative plates from Snowflakes: a Chapter from the Book of Nature (1863), a collection of poems, extracts, anecdotes and reflections on the theme of snow and the snowflake.  See more: http://publicdomainreview.org/collections/illustrations-of-snowflakes-1863/.

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.

Royal Flush

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As the late Joan Rivers would say, “Can we talk?”

I’m referring to bathroom hygiene.

5360420829_c2d1617f3b_bNow, before you say, “E-w-w-w-w-w-w-w,” I raise this because it’s one of those topics that no one wants to discuss in public, but that presents some very real challenges for those of us with scleroderma.

To wit, what do you do when your hands don’t work right—because you have digital ulcers, like me, and/or you have flexion contractures that freeze your fingers at right angles, and/or your wrists aren’t flexible and your skin is too tight and your fingers are sore or just not that strong anymore—and you have to clean your bum after taking a dump?

It’s not easy, and it can be downright frustrating.

I’ve discussed this with occupational therapists over the years and gotten a few helpful suggestions.

Here’s what I’ve found to be most effective. There are three essentials:

  1. Soft, strong toilet paper. Forget the one-ply stuff that supposedly saves money but disintegrates as soon as you tear it off the roll. You just need three times as much to do the job.
  2. Flushable toddler wipes. My favorites include aloe. You can buy these at any drugstore or Target, they’re inexpensive, and they make the whole process of cleaning yourself up much quicker and easier, especially if your fingers are weak or sore. Just be sure to check that the package says safe for sewers and septic systems. You don’t want to clog up your plumbing.
  3. Antibacterial hand sanitizer. These products have gotten a bad name, lately, because of worries that we use so much antibacterial soap and cleanser that we’re encouraging resistant strains of bacteria. But I’ve checked with my infectious disease doc, because I cannot use soap and water on my ulcer bandages without risking more damage to my skin beneath the dressings, and he assures me it’s fine. Hand sanitizer that I rub on and let air dry is a major part of my hygiene routine and a reliable defense against ulcer infections. Again, I favor products with aloe that don’t dry out my skin.

And here’s my method: Make a wad of toilet paper, large enough that you have a good grasp without exposing your fingers. This essentially provides padding for fingertips. Top it with a wipe. This gives you additional protection plus a gentle moisturizer for efficient clean-up. Swipe and flush. Repeat as needed. Then clean your hands with the sanitizer.

Sometimes, if you’re dealing with a bigger job, it helps to have some disposable vinyl gloves on hand, to be sure you keep your fingers clean.

If you have trouble pulling the wipes out of their plastic packaging, try cutting the package apart and placing the stack of wipes into a ziplock bag, the kind with a plastic slider at the top edge (I find these easier to open and close). This is also a good way to carry some wipes with you, in a purse or carryall, when you are out of the house.

If anyone out there has some additional tips, please share. I’m a fanatic about hand hygiene, because I’ve had far too many infections over the years. We all have to use the john, and those of us with scleroderma—or any other medical challenge that limits manual dexterity—have to be creative when it comes to bathroom habits. It’s not just a matter of staying healthy—it’s a matter of staying independent.

Photo Credit: KimCarpenter NJ via Compfight cc

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

To Treat or Not to Treat

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Ah, the gift of late August heat in New England. After a week that felt more like September, I’m glad to be back in sandals, at least for the next few days.

I’m also grateful for warmer weather that helps my ulcers to heal. A week ago Sunday, I awoke with pain in my left thumb that I hoped was just an inflammation. The pad of this finger has an intransigent spot of abnormal skin that occasionally gets thick and painful and usually responds well to careful debridement. But not this time.

My thumb was achey as I commenced a six-hour round-trip drive to bring Emily home from her summer job at her college alma mater, and the discomfort was just barely manageable with over-the-counter painkillers that wouldn’t make me drowsy. I suspected an infection. But when I finally got home and took a closer look, I didn’t see any obvious symptoms. No foul odor. No oozing puss. No extreme redness. Maybe topical antibiotics, just to be safe, would do the trick overnight?

I hate starting oral antibiotics, even as I’m grateful always to have some available at home, thanks to a team of physicians who know me well enough to trust my judgment and my follow-up reporting. This is a privilege of living in a wealthy Western country with good health care (despite all the political wrangling). I am very much aware of the risks of unnecessarily treating with antibiotics—the evolution of antibiotic-resistant strains of bacteria—and that threat frightens me, since I’m so susceptible to infections.

So, I waited overnight to see if a more modest approach would work. It did not. Too early on Monday morning, I was roused by severe pain in my thumb. It had swollen just enough to feel trapped in too-snug skin. Basically, it felt like my thumb was stuck in a car door. That, or the stabbing sensation of an intermittent electric shock or an ice pick are the sure signs of a bacterial infection in one of my fingers.

Time to double-up on antibiotics—one pill for the morning, and one for the dose I should have taken the night before. Then I cut a Vicodin in half and swallowed that, too. I also hate, absolutely hate narcotic pain meds, because they make me feel like a space cadet, but sometimes there is just no other way to deal.

It took me a good 48 hours on the antibiotics to dispense with the Vicodin, and another day for the now obvious infection to begin to clear. Today, a week later, my thumb is healing well, along with my other three digital ulcers of the moment, which always clear up when I’m on oral antibiotics.

Thank goodness. But will it always be so?

In his 8-25-14 financial column in The New Yorker, James Surowiecki writes a clear and compelling analysis of why Big Pharma doesn’t invest in new drugs that don’t make a profit.

This is relevant in light of the Ebola crisis in West Africa—“Diseases that mostly affect poor people in poor countries aren’t a research priority, because it’s unlikely that those markets will ever produce a decent return” on R&D, writes Surowiecki—as well as the reason why there is so little research into new antibiotics to treat resistant strains of bacteria.

The reason for the lack of investment in discovering better antibiotics, Surowiecki explains, isn’t for lack of awareness of future need. It’s “the business model. If a drug company did invent a powerful new antibiotic, we wouldn’t want it to be widely prescribed, because the goal would be to delay resistance.” With the prospect of limited sales, Big Pharma doesn’t want to make the investment.

What’s the solution? Surowiecki floats the idea of prizes for new drugs that have a public health benefit. The idea isn’t new: government-funded incentives for innovative solutions have been used for centuries and have become common in recent decades. They are only awarded if the idea works. They help to correct market forces that work to the detriment of the public good.

So why haven’t we started down this path, already? Huge up-front costs. Surowiecki notes that “a recent report commissioned by the F.D.A. estimated that it would cost a billion dollars to get a great new antibiotic, factoring in tax credits.”

To put this in perspective, that’s equivalent to the cost of about 200 Predator Drones.

I hope and pray, before the inevitable crisis hits, that our government can stop the political infighting long enough to get its priorities straight and make a serious investment in the future of public health, both here and abroad.

God-willing, this will happen long before that bottle of antibiotics in my medicine drawer no longer provides relatively quick treatment and relief from an infection that could all too easily get out of hand.

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.

Long Shadows

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At last. Sitting on the beach, in the sun, watching the waves roll in. I’m wearing shorts and a tank top, lots of SPF 50 sunscreen to avoid getting a rash on my photo-sensitive skin. I won’t be swimming, because the Atlantic is far too cold this early in the season, and the waters off Block Island, R.I., are chilly, and I have ulcers on my fingers that I can’t risk immersing.

But it feels good to be here. Even if the breeze is stiff and I have to pull on extra layers as Sunday afternoon deepens. Even if I can’t swim like I used to as a kid, jumping over the waves and body surfing until I turned blue and my teeth wouldn’t stop chattering.

So I sit in my beach chair and read a novel, do a little of the Sunday New York Times crossword, watch Al swim and dive in the surf. I take a nap and work on my tan (have to be careful with this, not overdo, given skin sensitivity). I wonder why the people next to us on the beach, with very loud voices, don’t realize that everyone within 20 feet, at least, can hear every word of their conversation, including how one of the men and two of his friends each won $500 at a craps table in Montreal and other fascinating details (for them, not for the rest of us).

Fortunately, I’m able to screen out their conversation when I read. And no one really seems to mind. On the beach, on a sunny Sunday, it’s live and let live.

As shadows elongate, we walk up the shore, collecting pebbles and even a few bits of sea glass—unusual for this beach, which is usually picked clean. I sit on a large rock as Al explores farther, my arms wrapped around knees to stay warm in the cool breeze, and watch a dad and his three daughters, all in wet suits, play catch with a pink-and-yellow rubber ball in the surf.

On our walk back, we pass a black-and-white mutt worrying a piece of driftwood, barking at its owners as they play in the water, then barking at the driftwood, then shoving the driftwood around with its nose and barking at it again. Someone has made a terraced sandcastle with smooth, rectangular walls; another has created a castle of sand globs and drizzles.

We eat dinner al fresco, across the road from sand dunes, deep turquoise ocean just visible beyond. We stop for an ice cream cone for Al and poke around the little shops. I find a scarf the color of sunset. We check on the Red Sox v Yankees score as the ferry pulls away from the dock for the hour-long trip back to shore. Our boys are ahead.

The day is a welcome escape from work and responsibility and so much sad and disturbing news in the world. On Monday afternoon, headlines announce the tragic murder of the three Israeli teens who were kidnapped more than two weeks ago, hitching home from school, and I sit at my computer screen and cannot concentrate on my writing. Our sunny, relaxing beach trip seems far away. I grieve for the parents and pray that cooler heads prevail, on both sides of this intractable conflict that could erupt at any moment. No good will come of more bloodshed. I pray that my eldest, Mindi, stays safe as she spends the remainder of her vacation in Tel Aviv.

If only we could all just go to the beach and, together, enjoy the waves, and the sun and a long, relaxing stroll as shadows grow long. Naive, I know. If only.

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.