Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

antibiotics

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.

It’s Not Over ’til It’s Over

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I don’t know about you, but I’m exhausted from watching the World Series. And even with the Red Sox now leading three games to two, the outcome is still anyone’s guess. With the exception of the Game 1 rout of the Cardinals at Fenway—a misleading, far-too-easy, albeit satisfying start for us Red Sox fans—each ensuing game has been a nail-biter through the bottom of the ninth. Even though most games have ended around midnight here on the East Coast, I’ve had to stay up and read a bit before falling asleep. Too much adrenaline.

REd_Sox_Washington_cropWould Cardinals slugger Carlos Beltran recover from his bruised ribs after crashing into the Fenway fence to catch the fly ball that cost the Sox a grand slam in Game 1? Would Red Sox slugger David Ortiz break the Cardinal pitchers’ lock on our offense and hit another one out of the park? Would any of us Sox fans recover from the obstruction call that threw Game 3 to the Cards?

My sister, who lives in St. Louis, is a die-hard Cardinals fan, so we’re enjoying a friendly rivalry of evening texts during each game. “I’m not talking to you right now,” she wrote after I texted how they got lucky with Beltran’s amazing save. I tried not to gloat when we won that first game, a good thing, because the next two games were heart-breakers for the Sox.

After we evened the series with Game 4, thanks to Jonny Gomes’s three-run homer and closer Koji Uehara’s picking off pinch-runner Kolten Wong at the bottom of the ninth with Beltran at the plate, she wrote, “Feel better?”

Yes, I did. This series gets settled at Fenway.

So, what does this have to do with living with scleroderma, you ask?

Well, let me tell you. First of all, watching a great World Series between two outstanding teams, one that’s your home team and the other that’s your sister’s, is a great way to forget about anything else that’s on your mind.

To wit, in the scleroderma department, my latest mishegas is yet another infected ulcer, this time in one of my toes, that necessitated starting antibiotics once again. Just as I was marveling how my toe was responding so well to the drug, returning to its normal color and shape, no longer waking me up at night with pain, a friend who is a geographer at Clark University shared her recent experience reviewing a National Science Foundation project in Baltimore (stay with me, this is relevant) that found conclusive evidence of antibiotic-resistant strains of bacteria in the Chesapeake Bay watershed.

This, in itself, is not news—ARBs, as they are called, were discovered this summer in the Hudson River, and have been found in water supplies around the world for at least a decade. The problem, as my friend explained, is that all the big pharmaceutical companies that have developed antibiotics, including Pfizer, one of the first large-scale manufacturers of penicillin, have discontinued their research and development of new antibiotics to treat the new resistant strains because it’s simply not profitable. This insidious public health problem, akin in potential impact to climate change, was discussed in a recent PBS Frontline program with infectious disease specialist Dr. Brad Spellberg. Scary news for one too prone to infections and anxiety.

No wonder dystopian movies are all the rage. Take me out to the ballgame. Please.

Second, watching the match-up between such worthy contenders is a lesson in mindfulness. Every time our guys are at bat or on the mound, I’m right there with them, totally focused on the other guy’s next move. Will it be a fast ball or a change up? A ball or a strike?

Each player has his little rituals for good luck, to manage tension—Gomes screws his hat onto his head before entering the batter’s box for the next pitch, Ellsbury adjusts and readjusts the strap on his batter’s gloves, Uehara takes a deep breath and peeks over the tip of his mitt before hurling another strike. I have to remind myself to take a deep breath, too. It’s only a game, right?

Finally, watching a great World Series is fun. The wily pitchers! The burly sluggers! We’re behind! We’re ahead! The bobbles! The beards!

All of us are more than just the sum of our health problems, our worries, our fears. The world can be a dangerous, frightening place. But for these few nights in late October, when the best Boys of Summer face off for a record-breaking, statistic-busting contest of will, strength, talent and strategy, I’m glad to be right there, cursing, cheering, hoping against hope for nothing more than the Sox batter’s ball to fly high and true, into the stands, into the glove of some grinning, bright-eyed kid who will remember this night for the rest of his life, believing that anything is possible.

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.