Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Body

Pre-exisiting Conditions

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Be forewarned: This is a rant.

Where are the grown-ups in Congress? Can we please go back to the days when people with strong opinions had the maturity to speak to one another and negotiate a compromise?

I had a hard time concentrating on my work this past week, with all the school-yard bullying on Capitol Hill that caused millions of hard-working federal employees to sit idle and worry about their next paychecks, while right-wing conservatives insisted they wouldn’t fund the federal budget unless they could gut the Affordable Care Act.

Then, with Orwellian ease, these same Tea Party Republicans turned around and began to press legislation to fund, piecemeal, all the government programs they realized their constituents valued, after all. Like the National Institute of Health. And help for poor women who can’t afford to feed their children. And blamed it all on the Democrats. Really? How stupid do they think we are?

Whatever your opinion about Obamacare, this is not the way to resolve it. The new law may have flaws that need to be worked out, but it also has already helped millions of children with pre-existing conditions to get health care coverage, something the free market has failed to do. And it promises to help millions of American adults with chronic illnesses like scleroderma to get necessary medical care that they could not otherwise afford. So many people tried to check out the new insurance exchanges this past week that websites across the country couldn’t handle the load. Clearly, demand is real and significant.

But there are so many lies, so much misinformation being perpetrated by a conservative coalition backed in large part by the Koch brothers, billionaire oil magnates whose corporate holdings include Brawny paper towels, Dixie cups and Georgia-Pacific lumber, among other profit centers. This past Sunday’s New York Times explains the months-long machinations that have led to the current standoff.

Even the idol of conservative Republicans, Ronald Regan, knew how to negotiate with House leader and died-in-the-wool liberal Democrat Tip O’Neill. Take a page from the Gipper’s playbook, Tea Party members, and let us get on with the real work of governing. Please.

What disturbs me as much as this hostage-taking political brinksmanship inside the Beltway is the cynical effort by this same conservative coalition to undermine the law’s effectiveness by trying to convince young, healthy Americans, especially college students, not to enroll in Obamacare.

The program’s long-term success depends on everyone, healthy or not, to participate and spread the risk. Where is our good old American compassion? Our sense of community and responsibility for each other? Not to mention the fact that young adults shouldn’t be boondoggled into thinking they can do without healthcare coverage. That is just pure foolishness. An emergency room visit for a broken ankle or dehydration from the flu—the kinds of medical crises that can strike anyone, regardless of age or medical condition—can easily cost several thousand dollars, far more than most young adults can afford. And it’s certainly smarter to get healthcare coverage when you’re young and healthy—otherwise you run the risk of being denied coverage when you get really sick.

It’s that pre-existing condition Catch-22.

Health insurance isn’t the only type of coverage that currently penalizes those of us who struggle with chronic disease. I cannot get affordable long term care insurance, something I may well need in the future. My scleroderma makes the premiums outrageously high. I also cannot add to my life insurance, which I fortunately had the foresight to buy when I was still healthy and in my twenties. But my coverage is modest, what I could afford back then.

I’m sure it will be years, probably decades, before those free market inequities are addressed. Meanwhile, I am praying that Congress and the President are able to work out their differences, get our dedicated federal employees back on the job, avoid the major catastrophe of a default on the nation’s debt payments, and refine the Affordable Care Act as needed without any more childish shenanigans.

I love our system of democracy. The older I get, the more I value the freedoms we enjoy. It’s high time for the principled adults to stand up to the egotistical ideologues, take back Congress and work together to solve the very serious issues we all face as a nation.

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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.

Surfacing

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At the inside crease in the first joint of my right middle finger, a charcoal gray chip of calcium is working its way to the surface. This has been going on for months. But now the tip of the chip is visible, and if I try to budge it, the sharp edges pinch.

So I need to wait it out. Kind of like a tiny submarine that isn’t quite ready to emerge. If only it contained miniaturized scientists, à la Fantastic Voyage, on a mission to repair my immune system.

I’ve discovered over decades of managing calcinosis that it’s better to let nature take its course than try to pry these odd calcium stones from my fingers. For one thing, I can’t really grasp a pair of tweezers tightly enough to dig them out. For another, it really hurts to do this. And disturbing the skin increases the risk of infection. So I use a combination of Aquafor and antibiotic ointments, dressings and bandages to soak them out, gradually.

Most of the time, this works. Once, several years ago, I had to have a clump of calcium surgically removed from my left thumb because it was too painful and wouldn’t come out on its own. Turned out it was attached to bone. But that’s been the exception.

Patience. It takes a lot of patience to let your body heal itself. For scleroderma, there are no quick fixes or easy cures. And there are many aspects of this disease that won’t heal unaided, if at all.

But one of the things that continually amazes me is how my skin, abnormal as it is, still knows how to heal itself. It just has a much longer timetable than normal.

Many of my finger ulcers take months to heal; some have taken years. Some of them form because of hidden calcium deposits that begin to surface; others, at pressure points. And yet, they do eventually heal. Sometimes the skin grows back thicker and sometimes it retains flexibility. The ulcers may reopen, but at least for a while I’ll get a respite.

This week, I was surprised and very pleased to realize that two intransigent ulcers finally closed up—in fall, of all seasons. So I’m down to three bandaged fingers from five. This is a major improvement.

Whenever a piece of calcium finally pops out, I’ll roll it around between my fingertips, just to explore it. How does my body make these strange, pointy crystals? Some can be as large as an eighth of an inch in diameter and leave a small crater in my finger.

But once I’ve cleaned out the hole with peroxide and dabbed on antibacterial ointment and clean dressing, within 24 hours, my skin has begun to repair itself and filled in. It’s really quite remarkable. For all the strangeness of this disease, my skin cells still can repair some of the damage. This is comforting.

Of course, nature can use a bit of help. I take medications to improve my skin circulation, which is critical to healing. I’m vigilant and meticulous about skin care to minimize risk of infection. I change my bandages every morning and use ointment, moisturizer and white cotton gloves at night to aide the healing process.

I also try to be mindful of how I move my hands and grasp things so I don’t bang myself. I take extra precautions, like wearing cotton work gloves when cleaning or moving cumbersome objects, to protect my bandages and skin. And I dress carefully, often in layers, to keep my hands warm.

All of this takes patience, too. After 30-plus years of living with scleroderma, I’ve adapted to the rhythm of my body’s long healing process. Some days, I’m far less patient and rant. But as long as I’m not in any significant pain, I’m able to ride out the frustration and regain my inner balance.

Today, checking the calcium chip’s long journey outward, I’m just glad it’s located in a spot that’s mostly out of the way. Maybe in a month or so, it will slip free and my skin will heal over, once again. Until the next time.

Photo Credit: Derek Lyons 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.

Coyotes of the Mind

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Friday night, as Al and I were walking home from synagogue under a brilliant full moon, a creature darted across the street ahead of us. Ghostly white, scrawny, doggish, with pointed ears and a long, thin tail, it disappeared into a neighbor’s backyard and the trees beyond.

Coyote. Had to be. Though our Central Massachusetts neighborhood is not overly forested, there are enough woods in-between lots for a coyote to lace through in search of food. And there have been occasional sitings in our area.

I shivered. Often during the past few hot summer months and on recent days when I’ve been too busy to take an afternoon break, I’ve walked our 15-year-old golden, Ginger, after dark. She loves nocturnal smells, and the stars have been stunning. No more. It’s colder, anyway, now that fall is here, and I don’t want to chance it with a coyote on the loose.

But I don’t want to give up those evening strolls, either. As long as I bundle up, I love staring up at Orion and Cygnus while Ginger pauses to snuffle each and every fallen leaf by the curb. Risks abound. If all I do is focus on the bad things that could happen, I’ll imprison myself. And her.

According to the Massachusetts Division of Fisheries and Wildlife, you should yell, blow a whistle, bang pots and pans or shine a flashlight to scare off a coyote. Not my preferred mode for a relaxing walk around the block. Maybe I’ll just wait a week or so before we venture out late again, as long as it’s not too cold.

Much as I have no desire to face down a live coyote, there’s another kind that I’m much more accustomed to confronting: those hungry coyotes of the mind—anxieties about health, money, security, family, the future.

These I fight often. Scleroderma, as any chronic illness, births a band of them, trotting across my subconscious, wily, ghostlike. They appear without warning, gobble up energy and optimism, and howl loudest on those nights when I have trouble sleeping.

What if I end up in a hospital some day and get one of those super infections in my ulcers? What if I gag on my food because my swallowing is sometimes uncoordinated and there’s no one here to help? What if I fall and mess up my hands even more? What if something happens to Al’s job and we lose our health insurance?  On and on.

But shouting at those feelings to go away, lecturing myself to silence the angst doesn’t work. It only seems to make those coyotes of the mind even stronger and more voracious.

No, especially if the anxieties have a basis in reality. Disease is disease. When your body doesn’t work right, it’s damn scary. As you gain experience coping, managing your meds and your symptoms and your docs, the anxiety dampens a bit. But the sense of vulnerability never goes away.

Better to shine a light on it, name what’s most frightening, acknowledge the storyline. Separating fiction from fact is the first step toward coming to terms with both the anxiety and the reality.

Power that light with compassion for your trembling, I try to remind myself when I find myself in the grip of wild fears. The more self-compassion, the longer you can be still and see clearly what it is you’re actually contending with—and discover the courage to be present and move beyond coping to living fully. Hard to do, but I keep trying.

Coyotes have adapted to suburban sprawl, say the wildlife experts here. Nearly all Massachusetts residents now live near them.

My inner coyotes roam at random. Lest they get too cozy, I’ll keep my flashlight handy.

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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.

Soup of the Evening

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Beautiful Soup, so rich and green,
Waiting in a hot tureen!
Who for such dainties would not stoop?
Soup of the evening, beautiful Soup!
Soup of the evening, beautiful Soup!
—Lewis Carroll, Alice in Wonderland

I’ve been making a lot of soup, lately. Despite a crazy 48-hours of 90-degree humidity last week, the nights are generally getting cooler, the maples are tinged with orange and I’ve started wearing my sweaters again. Fall officially arrives this Sunday, September 22, at 4:44 p.m. here on the East Coast.

No better way to take the chill off my hands and the fall transition than a big, steaming pot of soup. Cooking for Rosh Hashanah last week, I tried two new recipes. For the first night, I made an Armenian variation of lentil soup that, along with the expected chopped tomatoes, onions and garlic, included apricots and a delicate combination of cumin, ground coriander and dried thyme. Very good.

The second night (I always experiment on my guests—fortunately, this works out 99.9 percent of the time), I tried a Hungarian wine soup with blueberries, pomegranates and strawberries (though you can use any combination of fresh or frozen fruit), orange and lemon juice, seasoned with cinnamon sticks and cloves. Even better. Both recipes can be found in the wonderful international Jewish vegetarian cookbook, Olive Trees and Honey by Gil Marks.

I like making soup almost as much as I like eating it. It’s a magical process. I’m always fascinated by how easy it is to create a nutritious meal with a pot, water (or sometimes store-bought stock from an organic market or Trader Joe’s, which I find saves time and money and is nearly as good as homemade), fresh vegetables and seasoning.

As one who grew up on Campbell’s, I used to believe that soup was far too complicated to make yourself. It had to come from a can. The broth had to be salty, neon yellow, with tiny cubes of chicken and slippery egg noodles.

Then I discovered how to make chicken soup, with chunks of meat and lots of onions and carrots and celery, maybe some noodles thrown in. A whole new world opened up. How could I have ever mistaken that red-and-white-labeled, ersatz mixture for the real Jewish penicillin?

I no longer eat meat, so I no longer make chicken soup, but I’ve become a big fan of all kinds of vegetable and fruit soups, from the easiest minestrone to an amazing gingered plum soup from my Moosewood collection.

You don’t even need a recipe. Like a good friend, soup is forgiving. You can experiment, throw together whatever vegetables and spices you happen to like, add a little of this and a little of that, adjust here and there, and create a culinary masterpiece. (Just be sure to make some notes if you want to replicate it next time.)

All it takes a little advanced planning. Most soups involve only about 20 minutes of prep work. Then you can just go about your business while the concoction simmers and fills your home with the most savory smells.

And there is something so comforting about sharing soup at the table—delectable, relaxing, the perfect conversation starter. Easy to swallow. Revivifying.

Soup is an invitation and a fulfillment. A promise kept. Liquid love.

Chorus, anyone?

Beau—ootiful Soo-oop!
Beau—ootiful Soo-oop!
Soo—oop of the e—e—evening,
Beautiful, beautiful Soup!

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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.

Matters of Faith

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I find this time of year complex. It’s the transition to fall here in New England, with chillier mornings and ever-shortening days, a time when Jupiter shines clear and bright in the night sky by 8 o’clock and I’m never sure how many layers to wear, a time when my fingers go numb again.

It’s also a time of fresh starts—graduate school and senior year of college for our two daughters, and, for myself, a decision to place a higher priority on finding new markets for my personal writing.

Most of all, it’s a time of introspection, the Ten Days of Awe, between Rosh Hashanah and Yom Kippur, a period of reflecting on where I’ve been, where I’m headed, how I could do better by those I love, and my personal goals for the Jewish New Year.

To that end, I try to find something inspiring to read for the holidays. After rereading Moby-Dick over the summer, with its sweeping themes of the struggle between good and evil inclinations, I turned to a book with an intriguing, albeit chutzpahdik title, Proof of Heaven by Dr. Eben Alexander.

A New York Times best-seller for months, Alexander’s story is a compelling description of his near death experience from a very rare form of bacterial meningitis. As a scientist and neurosurgeon with extensive knowledge of the brain’s inner workings, he had always dismissed his patients’ reports of near death encounters with the afterlife. But his own severe and sudden illness, which shut down his neocortex (the part of the brain responsible for awareness), led to an out-of-body visitation with a supreme consciousness and worlds beyond this one that convinced him, upon his miraculous recovery, to tell his story to the world of God’s omnipresence and unconditional love.

Heady stuff. When I finished the book, I felt uplifted—that is, until the cynic in me kicked in and I began researching on the Internet. Sure enough, there have been plenty of critics, and Esquire totally debunked Alexander’s story in their August issue.

Oh, I thought with a sigh, I’m just a sucker. But the story still had the ring of truth to it—whatever Alexander’s alleged weaknesses and possible ulterior motives for writing the book, his account is consistent with the vast literature of near death experiences that describe encounters with a loving, all-encompassing One that needs no words to communicate, that is responsible for all Being, and that requires our partnership as humans to heal and complete this world, the only one we are capable of knowing.

So I moved on to a more substantive source, Art Green’s wonderfully complex and compelling book, Seek My Face: A Jewish Mystical Theology. I’m only a third of the way through savoring it. What fascinates is how Green, a leading modern Jewish theologian and fluid writer, captures the concepts that Alexander was trying to describe and places them within a solid Jewish textual framework.

He writes of a God (for lack of a better term) who both “transcends and surrounds the world” as well as fills it utterly, an Omnipresence, a supreme consciousness that is both apart from and deeply a part of us all. He wrestles with this Oneness and our sense, as mere mortals, of separateness and fragmentation, from God, from each other, from Nature, from Being. He reframes the question so many have asked throughout the millennia, “Why did God create the world?”:

Why is reality the way it is? Why does human consciousness experience itself as separate but bear within it intimations of a greater oneness? If all is one, on some deeper or truer level of existence, why do we experience life as so fragmented?

This is not a book of simple answers or assertions about the afterlife, but it is deeply moving and challenging. I have no brilliant insights to add to Green’s discussion, only more questions of my own, and a conviction that there is some kind of loving, pure presence that we all are a part of and a partner of. That faith, and the belief in the basic goodness of people, despite all the suffering and evil we see in this world, is central to my being and my ability to cope.

I had the privilege of being present when both of my parents died—my mother, in 1999, from a rare and very aggressive form of thyroid cancer, and my father, in 2009, from Parkinson’s. Each passing was profound. With their last breaths, I had the distinct sense, most strongly with my mother, that this was a passage to another state, one far beyond anything I could understand. Their mortal lives were over, but their souls had gone somewhere else. I carry that awareness with me and find it reassuring, albeit fleeting.

Living with chronic illness brings these questions and musings to the foreground. You are simply more aware of your own mortality, of the fragility of life, of the many ways our bodies can cease to function well. I do not know of any other way to deal with it all without faith, doubts included—however each of us defines it, whatever religious tradition or other faith practice each subscribes to.

Simply put, without faith, ever-evolving, ever questioned, ever more nuanced, I would be lost. To each and all of you, whatever your beliefs, I hope this time of fall’s transition is a blessed one, filled with peace, personal growth and good health.

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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.