Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

finger ulcers

Time to Stop Typing

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I’ve been having trouble sleeping the past few nights. My finger ulcer keeps waking me up. Usually when this happens, I have an infection. But that’s not the case this time. The skin is just too raw on the tip of my right ring finger, but I need to type and do other tasks, and the ulcer keeps getting irritated.

Now, I should be grateful that, at least so far, I don’t need to start antibiotics. I hate taking them. But the good thing about infections, much as they hurt: antibiotics provide significant relief within about 48 hours.

My problem at present is that there’s no quick fix for this particular variant of ulcer pain. It’s like having a headache in my finger. The only cure is time.

Our fingers have an extremely dense concentration of nerve endings. According to a recent article in The Guardian, our fingers have so many nerve endings that our brains actually outsource some neural computations about object orientation and movement to our fingertips.

All of those nerve endings make it possible to distinguish a baby’s cheek from a scruffy beard, stovetop heat from freezer chill, a satin sheet from flannel. When you think about it, the range of our fingers’ neural intelligence is really quite astounding.

That neural density also accounts for why it hurts so damn much when we get a paper cut, or smash our thumbs with a hammer. . .or develop digital ulcers.

The only encouragement I feel right now is that I’ve had two other recalcitrant ulcers in the past few weeks that gave me the same trouble, which are now, thankfully, past the achey stage. I’ve noticed over the years that there is some kind of tipping point in the healing process, when my damaged skin cells seem to wake up and repair themselves in large enough numbers that the pain level recedes. This can happen overnight.

So I’m going to cut this short, give my sore finger a break, take some Ibuprofin and Tylenol (they work differently), redo my bandages, and—I hope—get some sleep. Maybe tonight’s the night my body will work its magic, once again.

Photo Credit: JonathanCohen 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.

‘Tis the Season

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Thanksgiving snuck up on me this year. Not that there weren’t enough hints. Two weeks ago, as I sat in my optometrist’s office, Christmas carols wafted through the waiting room. Since then, I’ve noticed Santa statues guarding the aisles at CVS, holiday wreathes decking the doors at Home Depot and Black Friday sales clogging my email.

Oh, wait, was I talking about Thanksgiving?

Hard to know which season it is, or to remember what the holiday is supposed to be about. You don’t even see those hokey turkey decorations anymore in stores—you know, the ones with the cardboard heads and tails connected by honeycombed crepe paper bodies—or garlands of fake autumn leaves. As soon as the pumpkins and Halloween candy go on mark-down, the Christmas decorations come out. Given the commercial Black Friday competition, I’m betting it won’t be long before we’re confronted with holiday mega-sales starting November 1.

The weather is no help, either. Although we avoided the crazy snow that whomped Buffalo this past week, the polar vortex that swept through New England threatened to turn November into January. I now have seven ulcers on my fingers and one persistent sore on my inside right ankle. I am going through bandages like confetti. Some of these ulcers developed weeks before the freezing weather, but several emerged in the past few days, despite my best efforts to protect my hands. Way, way too cold for this time of year, and my fingers are not happy.

A reader recently suggested taking a vacation in Hawaii. This idea has some appeal.

Even as frigid temps made me cranky last week, however, we’re now enjoying a mild interlude before a Nor’easter that could bring at least a half-foot of snow by Wednesday evening. Thank goodness I already put the snow tires on my Prius.

Snow or no snow, I’m looking forward to the approaching holiday. Every year, we get together with our cousins for a wonderful meal, football games on the flatscreen TV and the comfort of family and friendships. And I have much to be grateful for. . . .

Our daughters are both thriving in their respective graduate school programs.

I have a full plate of work for wonderful clients.

We have a beautiful home on a quiet street with good neighbors who wave and say hello as I walk Ginger around the block.

Ginger is 16 and still has “pep in her step,” as our vet notes, with amazement.

Al has made it through yet another sale of the hospital where he is a social worker, and despite the less-than-desirable health insurance provided by his new employer, we have managed to cover our deductibles for my medical expenses (at least, so far).

I’m holding my own with my health. It never gets easier, but I have enough experience with scleroderma that I can figure out work-arounds when my hands aren’t cooperating or my feet need extra support or my body just needs more rest or time to do whatever it is I’m trying to do.

I am blessed with loving family, good friends, a supportive synagogue community and enough resources to live a modest, comfortable life. I have access to some of the best medical care in the world, right in my own backyard. I work for myself, set my own pace and own my own time.

And I can write.

Time for Thanksgiving, indeed.

Photo Credit: smilla4 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.

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