Stay the Course

January 18, 2011 at 10:32 pm (Uncategorized)

I just got the bill for the surgery I had last month to implant a defibrillator/pacemaker to protect me from keeling over dead from the sarcoidosis in my heart.  The surgery itself cost around $7,000, which seemed almost reasonable considering that I was attended to for two hours by two doctors, four nurses, and a representative from Boston Technologies (the defibrillator manufacturer).  The shocker was the nearly $70,000 the hospital charged to keep me overnight.

Good thing I got the defibrillator before I opened the bill.

Those of us in Chronic Town can become inured to ridiculous medical bills, so let me reiterate: it cost $70,000 for me to spend 22 hours in the hospital.  That comes to about $3,182 an hour.

$70,000 is nearly double the median annual household income in Montana of $42,788, according to the Kaiser Family Foundation.  $70,000 could buy a starter home in Helena.

I’m lucky to have health insurance—and not just any insurance, but a policy administered by the State of Montana.  I’m doubly lucky that my husband, Jay, has zealously advocated my case to our insurance company for my seven years in Chronic Town.  I’ve got my own case worker at the insurance company who is familiar with sarcoidosis.

When the first big medical bills related to my sarcoidosis arrived in my mailbox in 2004 and 2005—$20,000 for the mediastinoscopy that determined I had sarcoidosis, $7,000 for the PET scan to ascertain if the disease was responsible for nerve damage—I worried about the percentage I had to pay.  Figuring out how Jay and I could afford thousands of dollars of medical bills on his government salary was stressful enough.

My perspective changed when my sarcoidosis resisted the cheapest treatment (corticosteroids) and spread to my brain.  I needed regular, costly infusions of chemotherapy drugs and biologics like Remicade to curb the debilitating neurological symptoms the disease caused.  In 2007, I went from spending $10 for a month’s worth of Prednisone pills to getting $20,000 Cytoxan infusions twice a month and $15,000 Remicade infusions every month.  Getting sicker also meant frequent hospital stays that cost thousands of dollars a pop.

When I began to rack up monthly medical bills of $60,000 or more, my worry blossomed from the concrete concern of paying my share of these mind-boggling bills to the unbounded terror of “maxing out” my health insurance plan in the not-too distant future and then being responsible for every dime of these medical bills.

I learned that my health insurance plan has a lifetime limit of $2 million.  For those of you outside Chronic Town, $2 million probably sounds like a plenty of money—more than enough to cover annual doctor’s visits, hospital stays to have a baby or two, prescriptions for blood pressure medicine, and a few x-rays and lab tests.  My lifetime limit looked more finite with each big medical bill I opened.  That once-bottomless pot of money was on pace to run out in a couple more years—unless my sarcoidosis went into remission or we changed our health care laws to prohibit such caps.

Imagine our thrill when Congress passed and President Obama signed the Affordable Care Act last year.  Among the many good things the law enacted was an end to lifetime caps like the $2 million I was fast approaching.

Imagine our dismay when Republicans regained control of the House of Representatives and made repealing the Affordable Care Act their top priority.

I’ve tried to keep this blog mostly apolitical.  But I won’t keep quiet about Congress’ vote to repeal the Affordable Care Act on Wednesday, January 19, 2011.  The stakes for staying mum about what is decent and fair feel much higher when my fellow citizens’ literal well-being is involved.

Please, please, PLEASE call your representative and urge her or him to vote “No” on repealing the Affordable Care Act and to stay the course as Republicans try to de-fund portions of the law during the next two years.

The mainstream media has been relatively blasé about tomorrow’s vote in the House of Representatives.  Whatever the House decides, the pundits say, won’t matter because even if the Senate also repealed the law, President Obama would still veto their repeal—and the Senate won’t have enough votes to override the President’s veto.  This scenario well may be accurate in the short-term.  But there’s another truth.  House Republicans plan on using the vote as a call to arms in a war that only begins tomorrow.  Expect a 2-year campaign of House Republicans attacking and defunding pieces of the Affordable Care Act.  Read this Politico article for the details:

There’s a lot more at stake than the question of my $2 million lifetime limit.  There’s protection against becoming uninsurable due to pre-existing conditions.  There’s protection against getting dumped by your insurance company for even minor, unintentional paperwork errors.  There’s the fundamental principle that part of living in a civilized society is helping ensure that even the most vulnerable have the basic necessities of life–which to my mind includes reasonable and reasonably affordable access to health care.  By adding your voice to the call to hold the line against the attempt to repeal—and then chip away at—the Affordable Care Act, you are taking a stand for what is right.  Making health care available to all Americans—especially children—is a no-brainer.

Republicans have done a great job obscuring the basic facts about what the Affordable Care Act accomplishes.  They’ve made it sound like health care reform is the agenda of a sinister President intent on harming a hapless populace rather than the new law of the land that brings concrete benefits to us all.  Re-packaging the Affordable Care Act as “ObamaCare” serves this agenda.  So does demonizing President Obama.   Look at this offering from the American Patriots for Conservative Action for a fine example of these two tactics:

Then there’s been a flurry of deliberate misinformation—that “ObamaCare” will mandate abortions and create “Death Panels” that will pull the plug on Grandma’s ventilator.  More recently, Republican critics of health care reform have wrapped themselves in the mantle of fiscal responsibility.  In the rapidest about-face in recent political memory, the same folks who rammed through another extension of tax cuts for the richest Americans are suddenly deficit-hawks opposed to spending an extra dime on the uninsured.  By doing so, they choose to ignore the (non-partisan) Congressional Budget Office’s prediction that the new law will save $100 billion over the next ten years by curbing waste and cutting fraud.

Why so many Americans allow themselves to be tied into knots at the idea of the government they have elected overseeing their health care system—as opposed to our current system of unaccountable CEOs and other such privateers whose only allegiance is self-interest—is one I’ll never understand.  But suggesting that the government will have a role in health care reform does the trick every time.  I, for one, find the idea of federally-mandated regulations comforting.  Think about it.  Who would you trust with your health—the CEO of a company that profits by pinching pennies (and thus denying care) on every person in its grasp or a (gasp!) government bureaucrat whose interest is in following the law?

The rhetoric and lies pander to our basest self-interest.  It’s easier to appeal to our reptile brains that are intent on protecting what is ours—in this case, whatever insurance we think we have—than to nurture our humanity and look for solutions that can benefit us all.

An interview between FOX News host, Greta Van Susteren, and Representative Steve King (R-Iowa) is a perfect example of how the “Repeal ObamaCare” folks are pushing our selfish buttons (and telling a passel of fibs) in their campaign.  You can read the whole interview at

Rep. King follows the Republican playbook to a new low.  Rather than engage with anything resembling a fact, he opts for name-calling.  “ObamaCare” is a “malignant tumor” that “eats away American liberty.”  After reeling off the standard list of lies about the Affordable Care Act—that it is un-Constitutional, that it will restrict access to doctors and diagnostic tests—Rep. King comes up with the “real” number of uninsured Americans.  Even with cooked books, he admits to 4 million uninsured Americans.   For these unfortunates, Rep. King has little to offer. “There will always be those who slip through the cracks,” he says when Van Susteren asks what his party has planned for those who can’t “pay for health care for whatever reason.”  When she pushes him on who will be responsible for the uninsured if “ObamaCare” is repealed, he is cagey.  Perhaps, “the states can deal with that.”

Then Rep. King pivots.  Before we have time to let the idea of millions of our neighbors and co-workers without health insurance sink in, he lets us off the hook.  You see, those 4 four million are “less than 4 percent of the population. And it’s wrong for us to try to change 100 percent of the policy to address less than 4 percent of the population in America.”  In other words, greetings, Lizard Brain, worry not about your fellow man!  It would be wrong to let the minority trouble us.

Just before I get caught up in the logic of Rep. King’s lies, my own reality comes crashing down on me.  I’ve had the misfortune of getting sick with a chronic—and expensive—illness. Will “the states” help me pay my next $70,000 hospital bill when I’ve maxed out my health insurance policy?  I think not.

If you need a poster child for someone who has followed all the rules when it comes to health insurance and is still in danger of losing my coverage, use me.  I’ve never once let my insurance lapse.  A year before I was diagnosed with sarcoidosis, Jay and I even moved back from our 18-month sojourn on a Pacific island so that I wouldn’t have a gap in coverage.  I’ve paid my premiums on time.  I’ve paid my share of every medical bill I’ve gotten—even if it’s meant financial hardship.

Look on any street in Chronic Town and you’ll find dozens more people like me.  We’ve played by the rules and we’ve paid our fair share.  Whether we like it or not, our future is one of more medical care and more medical bills.

Those of us in Chronic Town need your help.  Please, please, please, call your representatives and ask them to stay the course.  The Affordable Care Act may not be perfect.  But at least it’s a start.

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Comments, Please…And More

January 11, 2011 at 2:33 pm (Uncategorized)

Hey all you citizens of Chronic Town,

One of my resolutions for the New Year is to take my blog more seriously.  Actually, as you loyal readers know, I already take the writing part of my blog seriously–sometimes too seriously.  My perfectionism has been known to impede me from posting more regularly here.  I get caught up in the quality of my writing (an occupational hazard, I suppose), so that I hold back from posting anything that I don’t deem polished enough, or complete enough, or thoughtful enough…enough already!

I plan to loosen up the look and feel of Chronic Town in the coming months.  I plan to make and this blog more alive.  Look for more pictures and links to like-minded bloggers and resources for those of living with chronic illnesses or loving someone in Chronic Town.

I also want to do a better job of opening this space up to you.  In my quest to make sure I don’t post writing with a misplaced comma, I’ve lapsed on responding to your stories, ideas, and comments.  No more! I formally invite you to write what it’s like for YOU in Chronic Town. If you take the time to comment on my blog, I will make sure I write you back.  Let’s get a dialogue going!

In keeping with this ideal, I am posting the two comments I received from Barb and Marianne on my last entry, “Faith,” along with my response to them.  How do hope and trust help you survive in Chronic Town?  Or has hope betrayed you one too many times, when it comes to living with a chronic illness?  How much should we dare trust another person, and can we hang onto our hope if our trust is broken?

As always, I am honored that you take the time to read what I write.


Here’s the conversation we’ve got going about “Faith

Barbara said,

What? Santa and the Tooth Fairy aren’t really real? Damnit, why did I hire that security firm for a yearly guard to keep that weirdo out of my chimney? Oh crap.

On the other hand, your post move me, and I so agree. It also brings to mind the old saying: “Trust God, Love People”. And then a whole NEW chunk of work presents itself. Love you!

Marianne said,

When I have a problem with trust, I turn to hope

I said,

Thanks for your comments, Marianne and Barb. I’ve been letting them percolate into my overly busy and rational brain. I’d love to know if I “got” what you two meant. Where does “Trust God, Love People” lead? Does that mean that all of us humans are way too, well, human, to be ultimately trustworthy? So that the best we can do is love one another– frailties,flaws, and lapses of good judgment? And then turn to God when we really, really need to rely on someone? Or, does this deceptively simple expression mean that we should trust that people are doing the best they can with God’s help? Hmmmm.

And your response was equally insightful, Marianne. Ever since I got moved into Chronic Town, I’ve thought a lot about hope–how we can’t let go of hope, yet how if we hope too much we ruin what we have by putting stock in what might be or should be. While we’re throwing quips around, here’s one of my favorites. Sartre said, “One need not hope in order to undertake one’s work.” I’ve fallen back on this one many times, when I need to get through a day and live fully in this day, but can’t get bogged down in hoping–hoping my writing finds a publisher or hoping my son appreciates the birthday cake I made or hoping my sarcoidosis will crawl back into the hell from which it emerged and leave me alone. Sometimes hoping gets in the way of my living mindfully in a moment. Strange, isn’t it? But sometimes, I have to “give things over to hope” in the same way some people “give something over to God.” And this is what I’m getting from your thought, Marianne…sometimes you’ve got to let hope take over when trust is broken.

Does anyone else have any thoughts on hope, trust, or anything else for that matter? Or did I misunderstand what you, Barbara and Marianne, meant? Write me here, or to my email (

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January 7, 2011 at 9:23 pm (Uncategorized)

It was bittersweet to help Andrew prepare for Santa’s arrival this Christmas Eve.  I know this will be the last year he maintains any belief in Santa.  He’s in a classroom that combines first, second, and third graders, and I’m pretty sure that those cynical, jaded 9-year olds clued him in on the unlikelihood of Santa’s existence.  What are the odds that a portly, white-bearded dude from the North Pole somehow magically knows your inner desires for toys and games; manufactures or procures your Razor Spark Scooter or Lego Hogwarts Castle set; loads all this loot onto a sleigh, which is pulled by a team of flying reindeer; arrives at your house—and somehow simultaneously at all the houses of sleeping children in your time zone; and then slithers down your chimney to sneak into your living room to nibble on the cookies you’ve left him, to write a response to your note, to carefully stuff your stocking, and to leave gifts for you?

I knew his innocent belief in all things magical was waning when, a few months ago, he scrutinized the note the Tooth Fairy left along with $3 under his pillow and proclaimed to his Grandma, “My mom wrote that note.”  Fortunately, Grandma could swear to him that I didn’t write that note.  My right-handed mother could be sure because she had written the note (at my request) with her left hand.

I’ve been expecting Andrew to ask me whether the Tooth Fairy and Santa Claus are real.  More accurately, I’ve been dreading this conversation.  Not because I don’t want to tell him the truth, but because this particular conversation marks the end of a sweet innocence and the loss of faith in the possibility that magic can happen to everyone.  I certainly don’t want to stunt my son’s intellectual or emotional development.  It just makes me sad that he is growing up so quickly.  And I feel like I missed too much of his baby and toddler years to sarcoidosis.

When I’m able to scrape away the thick layer of sadness that bubbles to the surface when I think about Andrew letting go of Santa Claus, I can see that the broader topic—of maintaining or losing faith—is especially relevant to me right now in other ways.  To start with, a close friend has broken my trust. The whos and hows and whys of the matter aren’t that interesting to anyone but me.  We’ve all gone through the painful process of recognizing that our idea of someone wasn’t real, after all.  Losing faith in my friend felt a lot like I had torn off lustrous and shiny wrapping paper to find nothing more an empty box.  What is left of a relationship when trust is broken?  I’m not sure.

This is a season of illusion.  We’re all temped and cajoled into the belief that we can manifest our love in material items.  But can we really short-circuit the hard work of loving one another by going on a shopping spree?  Several times in the run-up to Christmas, I caught myself about to buy Andrew a too-expensive present.  When I scratched at the shiny surface of my consumer frenzy, I found noble emotions underneath.  I really do love Andrew, and I really do feel like I’ve failed him by being sick for his entire life.  Yet would a $300 Lego set convince him of my good intentions and my bottomless love?  No.  It feels to me like our trappings of Christmas teeter on a very fine line between magic and illusion.  What separates the innocence of a child believing in the magic of Santa Claus from our adult magical thinking that a gift can stand in for or even replace love?

The trust that sustains my relationships feels as tenuous as that imaginary line between hopeful possibility and crass consumerism.  Now that my trust is broken, it feels like finding my way back to innocent faith in another is as likely to happen as reindeer flying across the sky.  Yet I can also see clearly how necessary this trust is.  Without a bountiful supply of faith in others, it is impossible to do anything.

Too, no matter how reluctant I was to trust anyone at that moment, I had no choice but to put my life wholly in others’ hands when I had the surgery to implant a defibrillator/pacemaker.  It was terrifying, as anyone who has undergone major surgery knows all too well.  I had to trust that my sarcoidosis specialist was right in recommending I get the device.  I had to trust the anesthesiologist to ferry me safely to and from unconsciousness.  I had to trust the surgeon to cut precisely into my skin and muscle.  I had to trust the hospital’s cleaning staff to keep germs out of the operating room.  I had to trust Boston Scientific to manufacture a safe device that won’t malfunction once it’s grown into my heart.  I had to trust my own body to heal after the surgery and to integrate this chunk of hardware into my being.  Maintaining faith in all these people—even the ones I couldn’t see—who controlled my well-being, took a willing suspension of my doubts that was akin to Andrew choosing to override his inner skeptic and believe in Santa Claus this year.

This deliberate deciding to believe in another—even when all evidence points to being a cynical skeptic—isn’t easy.  It feels like stepping off a precipice and believing that unseen hands will catch me.  But is there any other way to live?

I think I might talk to Andrew soon about Santa Claus and the Tooth Fairy—even if he doesn’t ask me if they are real.  I want him to know that “reality” is multi-dimensional.  No, a bearded fat man in a red suit doesn’t scamper down our chimney every year.  But the magic of waking up and finding excitement on Christmas morning is real.  I want him to know that magic is possible, that we can leap from our routine skepticism into radical hope.

Happy New Year.  May we all find new ways to trust and to believe.

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