Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

managing chronic disease

Just a Cold

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I’m kvetchy. I have a cold, and I feel crummy. I know there are many more serious maladies out there, and this too shall pass and all that, but right now, my nose is stuffy and I’m schlepping around with a box of tissues and a plastic bag in hand because I’m going through the tissues so fast, and I’m coughing and sneezing and, and . . .

4048824638_c249f3e4e6_oOne of the things I hate most about colds is how they set off my Raynaud’s and joint aches in the first 48 hours. I also hate struggling to breathe at night and not getting a good night’s sleep. My nose is so narrowed by scleroderma that nasal congestion can be a real challenge.

And I hate being in the middle of cooking and realizing my nose is dripping and having to stop what I’m doing, grab a tissue, blow, toss it, clean my hands so I don’t make the rest of the family sick, then go back to what I was doing, only to have to repeat the same rigamarole a few minutes later.

And I hate coughing so much that I can’t finish the meal I just cooked.

But most of all, I hate the fact that everyone refers to this condition as “just a cold.” Because minimizing a respiratory virus to “just a cold” status means that everyone walks around with “just a cold” and gives it to everyone else, instead of staying home and taking the time to get healthy. And not spreading their germs.

When I was a marketing director in higher education, I used to urge my staff to go home if they started sneezing or coughing a lot, to get better and to spare the rest of the department. Sometimes this took a bit of persuasion, because we’re all conditioned to keep working with “just a cold.” Usually I prevailed, however, and most everyone in our open office space appreciated it. And stayed healthier, as a result.

Being cognizant of how we’re not doing anyone any favors by walking around when we’re sick is particularly relevant in light of the news media’s current obsession with the Ebola virus. Ebola is often fatal. It is scary. It is transmitted by direct contact with an infected person’s bodily fluids or contaminated objects, like needles or syringes.

But Ebola is nowhere nearly as contagious in public spaces as influenza, which can be deadly and is spread by sneezing and coughing. By people who don’t bother to stay home when they mistake the flu for “just a cold.”

Consider this a public service reminder to get your flu shot if your immune system is compromised or you have asthma or other respiratory complications. Or any kind of chronic illness.

I’m going to get my flu vaccination this weekend, at a free clinic offered by my health care provider. That is, assuming my “just a cold” has finally cleared up.

Meanwhile, I’ll be loading up on fish oil and Vitamin C and hot tea and soup. And kvetching.

Thanks for listening.

Photo Credit: stevendepolo 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.

Fine Tuning

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During this past week, amidst so much bad news—the spread of Ebola in West Africa, the sudden eruption of Japan’s Mount Ontake that killed dozens of innocent hikers, the escalation of air strikes against ISIS in Syria, wildfires on the West Coast and more—I have been singing.

I highly recommend this as an antidote to scary headlines and other depressing thoughts.

In particular, I sang alto in a quartet accompanying our cantor and choir for Rosh Hashanah last Thursday and Friday. We’ll sing again this coming weekend, when Shabbat coincides with Yom Kippur. So we have another rehearsal this Thursday night.

This is a good thing. It’s wonderful to have the beautiful melodies of the High Holiday liturgy circling around in my head, blocking out all the bad stuff.

Services were lovely and uplifting, but it took quite a few rehearsals for me to feel really good about singing again. It’s been at least 10 years since I participated in a High Holiday choir, and I’ve never been part of the quartet. So it was a bit of a shock when we began rehearsals about six weeks ago to realize that I had gotten quite rusty. Despite more than a decade of playing instruments and singing in choirs, when I looked at the sheet music, I could not recall the names of all the notes.

Understand that I played violin for 11 years and was concert mistress in my high school orchestra.

What was happening to my brain? It actually scared me. Early signs of dementia? Age? Fatigue? Some crazy aspect of scleroderma? I didn’t know.

With practice, thank goodness, the notes came back, and by our second rehearsal, I began to regain my ability to sight-read.

A second challenge, however, was tied to scleroderma and its nasty partner, Sjögren’s Syndrome. Although I can still vocalize well, my range is more limited than in the past (I used to be able to sing second soprano as well as alto), and sometimes the notes come out warbled or off by a half-step, because my mouth is dry and I can’t always control my swallowing or how my throat opens.

I figured out how to compensate for some of this by remembering to breathe from my diaphragm, rather than straining my throat to sing louder. But I do have limits. I need to breathe more often, breaking phrases, because my lungs just won’t hold enough air. And if the group goes flat, I cannot hit the low G. Impossible.

I was feeling a bit awkward about all this, wanting to hold my own in the quartet. But then I realized that I had better fill in people, so they would understand and I could do my best for the group. Both the tenor and bass are physicians, and all are friends, so when I took the leap and explained about my health-related issues, everyone was quite supportive. This was a relief. I no longer felt self-conscious, and I certainly enjoyed singing all the more.

We received many compliments after services, how our voices enhanced the experience for the congregation. And we loved singing together. Once we learned the music, we enjoyed the added, serendipitous benefit that our four voices have natural resonance. Truly a delight to harmonize.

So I’m looking forward to our Thursday night rehearsal and to singing once again this weekend. And I hope our quartet will find more opportunities to sing together. The world is overflowing with bad news, and I don’t want to lose those notes 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.

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.