Existing Conditions

With the presidential inauguration only a few days away and the Republican-controlled Congress on a fast track to repeal the Affordable Care Act, it’s essential for all of us who live with chronic diseases to understand what’s happening to health insurance coverage. Much is still in flux. I have been staying up far too late recently, reading the most reliable sources I can find to follow the pace and direction of “repeal and replace” of Obamacare.

I do not intend to turn this blog into a political forum on the issue. However, I will confess that I am deeply alarmed by what’s happening in Washington and what I perceive as the significant risks of repealing a flawed but beneficial law with no clear plan to replace it. The drafting of the ACA involved many participants in the health care system. Its replacement deserves similar, deep discussion and debate, and enough time to consider all the implications—especially for the millions of Americans who may now lose health insurance without the means to purchase needed coverage, if insurance subsidies provided under the ACA are eliminated.

The procedural rules that Republicans are using to push through reform are complex. The process of ACA repeal began last week with a special budget process called reconciliation, which requires only a simple 51-49 majority in the Senate and precludes filibuster by opponents. In accordance, both Houses passed a blueprint for repealing Obamacare. There is a long way yet to go. Here is a January 13, 2017 article by Margot Sanger-Katz from the New York Times that explains all the steps: Obamacare Repeal is Moving Forward. When Will Changes Affect Consumers?  As she notes, it’s highly unlikely that those currently covered by the ACA will feel the effects this year of a potential repeal.

I have been very fortunate to have excellent health insurance through my husband’s employer. Since I work for myself, buying private insurance, even in Massachusetts, which created the prototype for Obamacare, is expensive. But I know I can get it if I need to, even though I’ve had scleroderma for more than three decades.

At stake for so many out there with serious health issues is the pre-existing condition protection provided by the ACA. So far, the president-elect has expressed an interest in preserving this aspect of the law. But, it’s complicated. Here is an excerpt from another piece by Sanger-Katz, explaining what’s at stake. You can read the full article here: The Biggest Changes Obamacare Made, and Those That May Disappear

One of the law’s signature features prevents insurance companies from denying coverage or charging a higher price to someone with a pre-existing health problem. The law included a host of other protections for all health plans: a ban on setting a lifetime limit on how much an insurer has to pay to cover someone; a requirement that insurers offer a minimum package of benefits; a guarantee that preventive health services be covered without a co-payment; a cap on insurance company profits; and limits on how much more insurers can charge older people than younger people. The law also required insurance plans to allow adult children to stay on their parents’ policies until age 26.

What would happen? These rules can’t be changed using the special budget process, so they would stay in place for now. But eliminating some of the other provisions, like the subsidies, and leaving the insurance rules could create turmoil in the insurance markets, since sick customers would have a much stronger incentive to stay covered when premiums rise.

What might replace it? Mr. Trump has said that he’d like to keep the law’s policies on pre-existing conditions and family coverage for young adults, but Senate Republicans recently voted against nonbinding resolutions to preserve those measures, suggesting they may be less committed. Some of the other provisions would probably be on the table if there were new legislation. Republicans in Congress would probably eliminate rules that require a minimum package of benefits for all insurance plans and allow states to determine what insurers would have to include. Mr. Trump has said he’d like to encourage the sale of insurance across state lines, a policy likely to make coverage more skimpy but less expensive for many customers. Republicans would also like to expand tax incentives for people to save money for health expenses.

Many of the Republican proposals would also establish so-called high-risk pools, which would provide subsidized insurance options for people with chronic health problems who wouldn’t be able to buy insurance without rules forcing insurers to sell them coverage.

The debate is far from over. We each have an opportunity to express our views to our congressional representatives. Whatever your opinion on this subject, please read beyond tweets and headlines, be informed and willing to listen to other points of view, and make your voice heard.

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.

Image Credit: Pablo Garcia Saldaña

Think Warm Thoughts

It’s really cold out. My hands are not happy. Six ulcers on my fingers and a tenacious one on my left ankle tingle and smart. The good news: even though we’re in the teens today, by Wednesday, it’s supposed to go up to the 50s. Welcome to New England.

As I await the warming trend, it’s nice to remember our long New Year’s weekend in St. Petersburg, Florida. Were we really at the beach one week ago? I have the pictures to prove it. So, I share with you, Dear Reader, some highlights of our trip. I hope these bring a little warmth into your day. Enjoy. . . .

At the Dali Museum, which features the works of Spanish surrealist painter Salvador Dali, a special exhibit explored the life and paintings of Frida Kahlo, a 20th century Mexican artist who broke new ground for women painters. I found her life’s story especially moving: she suffered a serious accident at 18 that caused her great pain and many surgeries over her lifetime, but her art enabled her to find meaning in her struggles and to express herself in a universal language.

While Dali’s paintings of melting clocks and dreamscapes are his best known works, I preferred these two examples of his early paintings.

Outside the Dali Museum, visitors tie their entrance wristbands to a bedecked tree. The strips of colored tags luff in the breeze.

The Morean Arts Center includes a collection of glass sculptures by Dale Chihuly. His exuberant use of color and form creates a mesmerizing, whimsical kaleidoscope.

Around the corner, the Center includes a glass blowing workshop. We enjoyed the demonstration, which resulted in a free form glass bowl.

We met ibises in the afternoon . . .

. . . and pelicans at sunset.

St. Pete Beach offered a chance to relax and pretend that winter didn’t exist.

Back home, there is snow on the ground and ice on the sidewalks. It will all be gone by week’s end. I know there’s more on the way. I just need to remember . . . think warm thoughts.

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.

Ain’t That a Groove

lywwpmswdog-hoang-duy-le

Our three Hanukkah candles have burned down for the night. As I write, a pot of lentil soup is simmering on the stove, and James Brown is singing Ain’t That a Groove on our local public radio station.

Do you love me, yes I love you
Do you love me baby, yes I love you

Six days ago, once again, we in the Northern Hemisphere passed through the longest night of the year. Fat, fluffy squirrels chase each other up and down our maple tree. They seem quite hardy, despite the fact that I took down the bird feeder a couple of weeks ago with intent to rig it so they couldn’t keep stealing bird seed by the pawful. Awful. Poor birds. I need to take care of it, as the temperatures drop.

Do you love me, yes I love you, do you
I just gotta, gotta know

Last week I read an analysis of climate patterns that explained how unusually high temperatures in the Arctic are forcing the Jet Stream farther south, trapping colder air over Siberia and sending it our way. We’re in for a bitter winter here in New England. But Al and I are traveling south for New Year’s, escaping chilly air and fog-iced roads for a long, warm, relaxing weekend and a friend’s son’s wedding. Not long enough for all my digital ulcers to heal, but a welcome pause before diving into January.

Hey, ain’t that a groove
Ain’t that a groove let me count

2016 was such a tough year for our nation and the world. I approach 2017 with doubt and trepidation. But then I remind myself: yes, the days are growing longer, once again, minute by minute. It is the way of the Earth turning on its axis. As we travel inexorably along our parabolic path round the Sun, I want to believe that the long arc of progress toward the greater good will prevail. In any case, the radio host just announced that 2016 was the first year that vinyl record purchases outstripped digital downloads. I’m going to assume that’s not fake news.

One for the money, two for the show
Ain’t that a groove now here we go

May 2017 be a year to remember for all the best reasons. See you in two weeks.

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.

Image Credit: Hoàng Duy Lê

Stand Tall

fa8ugyoy3us-ian-schneider

My posture has been lousy of late. Maybe I’m slouching in front of the computer too much. Or maybe it’s because it’s been too cold out and I’ve been fighting with a recalcitrant ulcer on my left ankle that’s made it harder to take a daily walk. Or maybe it’s just the collective weight of so much discouraging and downright frightening news that feels like a barbell on my shoulders.

Whatever the cause, I need to remind myself to straighten up, stretch my spine and hold up my head. Can’t face the world with a chronic stoop and cower. Nope. Especially not now.

So here’s my antidote, just in time for the holiday weekend: three gifts of inspiration that I share with you. I hope you enjoy these as much as I did when I discovered each one—and that you find yourself walking a little taller, stepping a bit lighter, as a result. And please, pass them along to anyone who could use a little uplift, too.

  1. Artist Christine Sun Kim’s TED Talk: The Enchanting Music of Sign Language
  2. On Being with Krista Tippett: Interview with Vincent Harding, Is America Possible?
  3. Tap v Irish Step Dance (Sorry, couldn’t find the origin of this YouTube video, but it’s a great performance!)

May your holidays be blessed with good company, much laughter, health and peace.

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.

Image Credit: Ian Schneider

It’s Up to Us

photo-1461722936851-13a79b294a5d

There’s a lot going on in scleroderma research, particularly regarding efforts to understand the causes of fibrosis—what makes skin get too thick—as well as possible treatments. Just this October, a study published in Arthritis Research & Therapy found that “two approved treatments for pulmonary arterial hypertension— Tracleer (bosentan) and Opsumit (macitentan)—can block a molecular pathway that promotes fibrosis in systemic sclerosis (SSc), and may be a potential therapy for these patients as well, according to an early study.” You can find a summary of the study here, on the Scleroderma News website.

I’m particularly interested in this study, because I have taken Tracleer for years, and I noticed within a few months of starting this medication that skin on my face and backs of my hands had loosened a bit. I’ve discussed this with my rheumatologists, who agreed with my suspicion that the Tracleer may have been responsible. One note of caution: this is a very expensive drug. You need good health insurance to pay for it. But the study results are certainly encouraging. Not my imagination. Not by a long shot.

Path-breaking research into the causes of scleroderma, as well as the ongoing search for a cure, depends on all of us to contribute in any way we can—with financial donations as well as participation in research studies. As December 31 draws near, I hope you’ll join me in making a gift to the scleroderma organization of your choice. Here are some links:

We may not see a cure for this cruel disease in our lifetimes, but progress is being made. Each year brings more insight and increasing hope that we will get the answers, sooner than later. Thank you for your help.

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.

Image Credit: Connor McSheffrey

First Snow

img_2491It’s always a surprise, that first coating of white. This year, it arrived on Monday, just an inch, already melting by mid-afternoon. But the flakes fell softly in the morning, fat, puffy, like thousands of tiny parachutes drifting earthward. Clinging to evergreens, disguising flaws, the snow absorbed sounds as it fell, hushing the world, slowing all down.

Mid-morning, as snow continued to fall outside my window, I was on a video conference call with people in New York City (rain), the Catskills (snow) and the Netherlands (almost never snow). The two young daughters of the Dutch woman overheard us discussing the weather and asked to see. My client in the Catskills turned his computer around to give them a peek of his blanketed yard. Their eyes widened with amazement.

By early afternoon, I had to go to the post office to mail some packages. Should I wear boots? I tried to slip on my rain boots but had to pull them off again. A few weeks ago, I kicked myself in the inner left ankle, one of those slips of coordination that occasionally plague my stride. This has morphed into an ulcer, then a rash from bandage adhesive. I saw my podiatrist last week, who prescribed steroid ointment and compression socks, and explained how weakened veins in my ankles are exacerbating the healing process. Which is why I couldn’t wear the boots. I opted for walking shoes with good treads. I’m hoping the ankle will improve by the time the serious snow falls.

Two o’clock, when I returned home, the sun was shining, the snow compacting as it melted. My footprints revealed slate. I shed shoes for slippers, ate some soup, forbade myself from reading any more news and got back to work. I didn’t notice the sun setting and the darkness settling in.

Winter is coming, and cold, and ulcers, and more snow than I want to contend with. The days grow shorter and darker. Headlines weigh on my heart. But halfway around the world, two little girls giggled at the novelty of a world transformed by white. I did the same when I looked out my window Monday morning. Let there be Wonder.

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.

50 Shades of Brown

On Thanksgiving weekend, Al and I took to the woods for an afternoon hike. Most of the trees were barren, their leaves forming a soft, subdued tapestry beneath our feet. Along the trail, there were still hints of green—a tuft of grass, a patch of lichen. But my favorite meditation on a late November walk is to study the subtle browns of autumn’s end: caramel, ginger, cinnamon, umber, burnt sienna, slate-brown cedar, the warm copper of an old penny. Such stunning variations on a theme. And the perfect antidote to tense times.

For you, Dear Reader, here is a sample of what I saw. Relax. Enjoy the view. And be sure to play the short video at the end.

img_2483

img_2474

img_2477

img_2470

img_2481

img_2476

img_2482

(If you can’t see the embedded video, click on this link.)

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.

Falling Leaves

photo-1477524104304-f63f8e781d1d

See how efficient it is,
how it keeps its shape—
our century’s hatred.
How easily it vaults the tallest obstacles.
How rapidly it pounces, tracks us down.

from “Hatred” by Nobel laureate Wisława Szymborska

Cruel words, cruel acts eddy and swirl in every corner of our country since Election Day. I await our president-elect’s forceful denunciation of the hate speech and hateful acts being committed in his name. Two weeks and counting.

I take comfort in the many acts of kindness and caring by everyday Americans to censor those who feel emboldened to say and do what they have apparently been thinking all along. This gives me strength.

I feel wary. Will I be a target of derision, with my long pinched nose and tight mouth and awkward hands that slow me up at the checkout counter, while others wait? It is not a question that I have ever considered before. When I was grocery shopping on Friday afternoon, a man with tattooed arms hovered nearby while I rang up my items at the self-checkout lane. He kept moving closer, then stepping back, impatient. He said nothing. He did not make eye contact as I moved to the side to finish packing my bag. Before the election, I would have simply thought he was in a hurry. Now, I am not so sure. Or, perhaps, I am the one who is judging him unfairly.

Fears hover beneath the surface of normalcy. Thanksgiving is coming and I don’t feel celebratory. But I want to. I want to enjoy the holiday with my family. So I turn my focus to my many blessings: my loving husband and adult daughters, the warmth that greets me when I step inside our home from the approaching cold of winter, our quiet street, supportive friends and community, my clients who entrust me to promote their good works, the freedom to express my own truths through my writing, my art.

I am grateful for our great country, for all its fault lines and bitter conflicts. We can do better. We must.

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.

Image Credit: Timothy Meinberg

Words Matter

beckmann

I am struggling to know what is real.

A red and blue map lays brutally clear the evidence that we are a nation deeply divided. Half of us hear words of hate as a harbinger of authoritarian rule and civil rights destroyed; the other half hear the same words as the not-to-be-taken-seriously polemics of a pragmatic deal maker who will solve all our nations ills.

I await in a state of suspended animation.

Our president-elect appears as stunned as we are that he won. Commenting on nationwide protest marches, he has tweeted that he “loves the fact that the small groups of protesters last night have passion for our great country,” the morning after he described the same as “professional protesters, incited by the media.”

He has said in a Wall Street Journal report on Friday that, after listening to President Obama when they met on Thursday, he will consider retaining provisions of the Affordable Care Act that protect people like me with pre-existing conditions and keep adult children up to age 26 on their parents’ insurance. He has described Secretary Clinton, whom he demonized relentlessly and threatened to jail if he were elected, as “very strong” and “very smart” in a Sunday 60 Minutes interview. He has also repeated his plan to export or incarcerate undocumented immigrants “who are criminal and have criminal records” and build a wall with Mexico that could include “some fencing.” 

He has said many disparaging, divisive words over the course of this brutal, cynical election that he has repeated over and over, others that he has denied or reversed in the blink of an eye. Asked by the Wall Street Journal if he regretted any of his words during the campaign, he said, “No. I won.” Asked by Leslie Stahl on 60 Minutes about his response to the rash of hate crimes and speech spreading across the country, he said “Stop it.” The same day that the interview aired, he named Stephen Bannon, former head of alt-right Breitbart News, as his chief White House strategist. A sample headline from Breitbart, while still under Bannon’s leadership last December: “Why Equality and Diversity Departments Should Only Hire Rich, Straight White Men.”

I don’t know whom to believe.

My world is filled with conversations among friends, in person and in cyberspace, arguing, debating, finger-pointing, grieving, offering empathy and support, urging resistance, counseling calm. Some are profoundly, genuinely scared for their lives. Others express deep gratitude for the support they’ve received from friends and strangers, alike. Still others say to stop whining.

Lists swirl through the media of potential cabinet secretaries and key appointees, including names of oil company executives and climate change deniers. GOP leaders boast of using parliamentary maneuvers to avoid any effort at bipartisanship in pushing through their agenda. The president-elect reassures the president of South Korea that the U.S. will still support her nation, despite his campaign claims questioning that critical strategic alliance.

People leading the protests in cities across the nation criticize President Obama and Secretary Clinton for capitulating in their efforts to promote a smooth transition of power—but buried in an account of the protests in this Sunday’s New York Times is the statement that many of the protest leaders “either did not vote or chose a third party candidate in the general election.”

An essay by Teju Cole in this week’s New York Times Magazine cites Eugène Ionesco’s 1958 play, Rhinoceros, as a chilling reminder of the insidious nature of evil and our willingness to rationalize the collapse of civil society until it is too late.

Kate McKinnon, in a cream-colored pantsuit, plays the piano and sings the late, great Leonard Cohen’s Hallelujah in SNL’s cold open segment that brings me to tears. She ends her finest Hillary impersonation with the words, “I’m not giving up. And neither should you.”

Words matter. My words, yours, what we say to each other, how we listen. What I write.

Of troubled times, author Toni Morrison offered these powerful words more than a decade ago:

“This is precisely the time when artists go to work. There is no time for despair, no place for self-pity, no need for silence, no room for fear. We speak, we write, we do language. That is how civilizations heal.

“I know the world is bruised and bleeding, and though it is important not to ignore its pain, it is also critical to refuse to succumb to its malevolence. Like failure, chaos contains information that can lead to knowledge—even wisdom. Like art.”

Image: “Paris Society” (1925/1931/1947) by Max Beckmann, on display at The Metropolitan Museum of Art’s current exhibit, Max Beckmann in New York. Beckmann was a German painter whose works were banned by the Nazis as “degenerate.”

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.

Fitful

As Election Day arrives, I have found it harder to sleep. So much is at stake. I’ve been plagued by a low-level headache that flits from temple to temple. I’m exhausted at night but can’t easily turn off my mind. Regardless of the outcome tonight, our country faces a very contentious future that will take a long, long time to heal. More stress is guaranteed.

7736889972_edcee6db5c_oThere is only one silver lining to this mess: I will finally get in shape. Why? Because I discovered last week that the one way I can get rid of my tension is to work out. Al and I at long last got back to the gym Thursday night. I walked a mile on the indoor track, rode 2.3 miles on the stationary bike and listened to a podcast that had nothing to do with politics. Voila! My mood improved. Nothing like putting one foot in front of the other or pedaling, pedaling, pedaling to push out the stress.

On Friday, Em got me away from the computer to take a half-hour walk around the neighborhood—something I have been neglecting recently as I’ve focused on work deadlines and read too many election analyses. On Saturday, we all joined Al’s brother and his extended family and friends for a three mile Boston VisionWalk in memory of Al’s nephew, who died all too young, two years ago. It was an uplifting way to get exercise and do some good in the world. I devoted Sunday and Monday to board meetings for The Good People Fund, which supports creative individuals who tackle hunger, poverty and other seemingly intractable social issues at the community level, with amazing, positive results. All of this was the best I could do to counter all the hate speech and negativity swirling around us. It helped me sleep a little better.

As I write, I have no idea how the election will turn out. I am afraid for our country. I am praying that sanity and compassion will prevail, that innuendoes and guilt-by-association will be debunked, that each of us will think beyond our own needs and concerns to do what is best for our society and nation as a whole.

And I will keep on walking, keep on walking, one foot in front of the other.

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.

Image Credit: Ryan McGilchrist