Austin to Anchorage – They’re Off!

I want to introduce you to someone special: my super fabulous Beloved Nmarleneiece #2.

This is Marlene. She just graduated from the University of Texas Austin. And this summer she and 70+ other UTAustin students are cycling from Austin to Anchorage, and raising a lot of money for cancer research and support. This is the Texas 4000 (for the 4000+ miles from Austin to Anchorage) – developing leadership skills and a new generation of advocates, volunteers, and philanthropists, plus riding a whole lot of miles. With the money raised each year, Texas 4000 awards grants to organizations focused on research or support programs, such as MD Anderson, UT Austin Biomedical Engineering for research, and Brent’s Place which provides housing for immune-compromised children undergoing cancer treatment, among others.

The riders will cover 3 different routes: Ozarks, Rockies, and Sierra. Marlene is riding the Sierra route. They started from Austin last weekend, accompanied by some extra riders to send them off. Marlene’s mom, my sister, rode along for the first 25 miles (more about her later).

The Sierra riders will cross through New Mexico, cross the desert into California, up through the Sierras, through British Columbia, and into Alaska. Each of the routes have unique challenges. But they’ll all meet up in Alaska, and ride into Anchorage August 11.

I’m going to be there to welcome her! I’m so proud of her (and all these riders). They’ve been training all year, organizing, and fundraising. Reading some of their personal statements, it’s clear that many are riding because someone close in their life has had cancer. Marlene is riding for me. You can read her statement herebald 1. I cry every time I read it. (here we are a long time ago —->)

I hope you’ll take a moment to check out their website. Take a look at what these fine young people are doing. Take a look at their routes. And if they’re coming through your area, give them a little love. If you come upon the riders, give them a shout or a thumbs up or a word of encouragement. What they’ve taken on is an awesome challenge! As someone who is no stranger to endurance events, I am blown away by the idea of this. And as someone who knows a little about endurance events, I know how much a word of encouragement can mean. There are moments when a simple thumbs up means the difference between giving up and continuing. So if you see these riders, give them some love. And thank them.

You can check out this crazy event and all of these wonderful kids at www.texas4000.org. If you have a spare minute now and then over the next 3 months, send them good, safe, strong thoughts. I’ll post updates now and then.

And to you, Marlene, and all of the other riders, good luck, stay strong,  help each other out, and know you will always find a little more strength than you think you have.

I’m so proud of what you’re doing. I love you. And thank you.

Julie

 

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Holiday Weekend

I just got back from teaching. As I was driving the hills of the last two miles to my house, I came upon someone walking. It’s relatively rare to see anyone running or walking (except me) because it’s all hills and there are no sidewalks or shoulders.

But as crested one of the last hills, there was an old man walking. He was old. He was pretty massively overweight. And he was walking. He wasn’t walking fast, in fact, he was barely moving – he wasn’t even moving quickly as an “amble,” or “leisurely.” But he was walking!

He just kept putting one foot in front of the other. And that’s the point.

It can’t be easy for him. His joints must ache from all that extra weight. It’s a very steep hill. And there’s traffic. And it’s a holiday weekend, so surely there are other things to do.

But there he was. He’s clearly made a decision toward being healthier. No matter how long he keeps his commitment up, for today, he made a choice to turn toward health. It took commitment to put off holiday/weekend activities. It took commitment to get up that hill – no matter the pace. It took a commitment to make one healthier choice today.

On this holiday weekend, I’ll be digging in the dirt. Today I’m planting a few more vegetables. Yesterday, I did battle mightily with the wisteria which are trying to eat the whole world. And later, I’ll go out for a run. And then I’ll eat some of the lettuces which are just starting to come in down in my garden. Nothing monumental, nothing life-changing. Just small choices, small actions toward something better/healthier (or at least not making things worse), for me, and for the world around me.

Cheers to the old man walking. Cheers to you – I hope you get outdoors this weekend and do something active. And thank you to all the people for whom this weekend is for. Make sure to spend at least a little time this weekend holding them in your thoughts. Peace.

Julie

Posted in commitment, healthy choices, memorial day | Leave a comment

No, That’s Not True, Mr. President – and Why It Matters

Last week, a New Yorker political piece by Evan Osnos included this: “Other than golf, [Trump] considers exercise misguided, arguing that a person, like a battery, is born with a finite amount of energy.” This is not the first time that trump’s disdain for exercise (or any healthy activity) has been noted.

But this idea that we have only a set amount of energy for our lifetime is wrong – dead wrong. Exercise does deplete our body’s store of fuel – glucose, glycogen, and fats – temporarily. But those stores are replenished as soon as we eat. In fact, our body’s store of fuel will deplete anyway, and need to be replenished just from living, It’s a constant process of burning fuel and replenishing.

There is a wealth of data to support the exact opposite of his beliefs.

-A 2008 study of sedentary adults (Peutz, Flowers, O’Connor, published in Psychotherapy and Psychosomatics) found participants involved in a 6-week program of low-moderate exercise three days per week had improved sense of vigor and energy, and lower levels of fatigue.

-From research on exercise and depression, we know that exercise produces changes in hormone levels and chemical changes in the brain which improve mood. A study by Jeremy Sibold in 2009, presented at the annual meeting of the American College of Sports Medicine, found that moderate exercise created a boost in mood, for people of any fitness level, which lasteed up to 12 hours.

-A 2012 study found that people suffering from depression had improved cognition after walking in nature.

-Exercise improves energy, cognition, and quality of life for elderly and frail.

-Exercise improves quality of sleep.

In particular, numerous studies on exercise and cancer patients have proved that, far from depleting energy, regular moderate exercise improves energy and lessens fatigue.

-A 2008 study showed improvement in fatigue with a walking program for Leukemia patients undergoing treatment.

-A meta-analysis of existing studies on weight training and cancer patients found improvements in muscle strength, which improves functionality and fatigue, with no negative implications for cancer patients.

-A 2012 meta-analysis of 34 existing studies found wide improvements in strength and quality of life for cancer patients who exercise moderately.

So the president has said one more thing that is false, so what? If he’s unhealthy, and fat, and lazy, why does it matter?

Because he’s giving an excuse to a population which is generally pretty unhealthy already. Sadly, people listen to him, and some actually believe him, despite all evidence to the contrary. We’ve got a population which doesn’t exercise regularly, has a vastly growing obesity problem (and I’m not fat-shaming here, but obesity is definitely linked to poorer health and poorer quality of life), and doesn’t eat very well. And now we’ve got a president who eats crap, doesn’t exercise – and his many golf trips don’t count unless he’s walking the course and carrying his own clubs, which he’s not – and tells people lies about how exercise isn’t good for the body.

It can be hard to find time to exercise. It can be hard to make healthier choices in what we eat, drink, or how we live. And those choices matter. They lead to an increased risk of cancer, diabetes, heart disease, and many, many other medical problems. They lead to more missed work, and lower productivity. They lead to a lot more people not feeling as good as they could.

No one has to be perfect. But small choices for better health can add up to big improvements. People need encouragement. They don’t need one more easy excuse.

Julie

 

Posted in benefits of exercise, exercise and depression, fatigue, health insurance, healthy choices, healthy lifestyle, quality of life | 1 Comment

“Access” Means Nothing If It’s Not Affordable

Warning: This post is about healthcare; it is political; it is personal; I am angry; there may be cursing.

Once again, I am compelled to write not about fitness, but about healthcare (because, of course, to anyone who has ever had cancer, or had a loved one with cancer, healthcare is always a top priority). On Thursday, the House GOP passed their most horrendous version of their healthcare repeal bill; it now goes to the senate. They will claim that they’ve preserved coverage for those with pre-existing conditions (like me). Technically true – insurers would not be allowed to drop people – it does allow states to get out of rules that protect us, so it will totally depend on where you live.

What it does do is allow insurers to raise premiums for anyone who gets sick or has some other type of pre-existing condition. And the list of pre-existing conditions is LONG. It includes acne. It includes addiction. It includes pregnancy. HIV/AIDS. Dementia. Migraines. Sleep apnea. Tooth disease….On Twitter, Senator Sherrod Brown tweeted out the entire list. So, for all of these conditions, insurers would be allowed to raise your premiums – a sick surcharge.

For example: people with metastatic cancer (super important to me since about a third of all breast cancers return and become metastatic at some point) will pay an extra $142,000, give or take a few thousand. Lung cancer, $72,000. Arthritis, $26,000. Got an autistic kid? You get to pay about $5,500 extra every year of his life. Their solution is to create state “high-risk” pools for all of us who will not be able to afford these surcharges. Estimates are that insurance in these pools will far exceed $25,000 per person. (all figures from Kaiser Family Fund, AARP, reported by Time, NY Times)

~I’ll add a short reminder of my experience before ACA. After I was diagnosed with breast cancer, my insurance company (Aetna) couldn’t dump me because I’m in NY, where that was not legal. Instead, they began raising my premiums. Within a few years my premiums had more than tripled. Because of my illness, I was working less (although I worked as much as I could all through treatment). My insurance premiums ended up being more than my income. Without a partner who could cover more of our joint living expenses, I would have had to choose between being homeless (and I may be strong, but I know I don’t have the fortitude for homelessness), going without treatment and waiting to die, or perhaps moving back in with my parents, unemployed, out of money, in my 40s.

Of course, this completely ignores a whole group of people – very many of whom are greatly in favor of this bill, and a lot of those who wrote this bill – who have not been diagnosed yet, but who are deeply unhealthy. Lazy people who never exercise, people who smoke, eat junk every day, fat, sit on their asses drinking wine every night…one could argue that those people should be charged a surcharge, because from their lifestyles, they are at a high risk of disease. Or how about genetic pre-disposition. For instance, because I was diagnosed with breast cancer at a young age, my nieces and nephew are all at high risk for breast cancer. What’s to stop insurance companies from slapping a surcharge on them? But no, for now, lazy slobs and people with bad genes are safe. It’s not those of you who are pre-diagnosis, just us post-diagnosis who will suffer.

Technically, we’ll still have access to health insurance. But how many of us can afford an extra $100,000 (just in premiums) when we have cancer? Access means nothing if you can’t afford it! 

Other aspects of the bill are equally troubling. If states choose to opt out of current rules, insurers will no longer have to cover things like emergency services. So, you’re having a heart attack, or your kid falls off the jungle gym, your ER visit and all associated expenses will not be covered. Routine wellness exams and cancer screenings may not be covered. So, when you are diagnosed with cancer, it’s more likely to be found at a later stage – maybe even when it’s metastatic so you’ll be charged and extra $142,000. Mental health (including addiction treatment) will not be covered on par with other health. So, all of you worried about the opioid crisis, now the only people who will get addiction treatment are the super wealthy. Funding for rural doctors and hospitals will be slashed. And weirdly, this bill will also cut funding for special education.

But what’s equally (maybe more) disturbing, is the attitude about all of us with pre-existing conditions. I’ve been noticing this for a while. From politicians, from commentators, in conversation, we – the sick and disabled – are other. We are the problem, not the insurance industry. Rep. Mo Brooks basically said that we – people who have been sick – are to blame, that people who lead “good lives” are healthy. Rep. Robert Pittenger says we should all just move someplace else. He doesn’t say where. Joe Walsh, who is a famous Deadbeat Dad, at one point owing over $117,000 in child support, made rude and heartless statements in response to Jimmy Kimmell’s healthcare plea with the story of his newborn son’s emergency heart surgery. And who can forget – going back a couple years – Alan Grayson’s advice to people who get sick: “Die quickly.” Incidents of harassment and threats against the disabled are rampant in the past few months. I and a lot of other healthcare and cancer advocates have been threatened on social media. We – I – have been told we should just die and leave society to the healthy.

What should we take from all of this? That we’re too much of a burden on society? That we “deserve” to be rounded up? That we are no longer useful to society because we got sick?

I’ve also heard a lot about how “hard-working” people shouldn’t have to pay for us. Well, first of all, we do pay, we have been paying into the system for year, that’s what insurance is. Insurance spreads the cost of catastrophic expenses over a large pool. That also ignores that most of “those” people who are perceived as being lazy moochers are actually disabled, or partly disabled. But having healthcare means that many of those people can still contribute to society if their conditions are maintained. People with Parkinson’s or MS are able to continue working and functioning longer when they are receiving proper treatment, for instance.

But this idea of who is working hard is decidedly skewed. It seems that right now the only people who are considered “hard-working” are men (mostly) who do physical labor. I don’t dispute that they work hard. But they are not the only ones who work hard.

I’m a musician. I work hard. I’ve worked hard my whole life. For decades, I missed holidays with family because I had to work, to entertain the rest of you on your days off. For much of my adult life, I rarely took vacations – always had to practice or work. Growing up, I spent countless hours practicing instead of going out with friends – no spring breaks vacays in college, no movie nights with friends when I had an audition coming up. As a fitness expert, I spend endless hours reading and studying to keep up with recent research. But a lot of “hard-working” folks, even people who don’t work, even members of my own family don’t think I deserve affordable – not free – affordable healthcare because I’m not hard-working. Or at least that my work has no value, and so, am not deserving of healthcare like people who work.

I work. I pay my taxes. I’m also pretty sure the woman who cleans up your shit in the toilets at your office or the restaurant your went to for lunch feels like she works hard, too. Or the guys keeping up your lawn (which, BTW, mow your own damn lawn, you lazy jackass). Or the people working three low-wage jobs to try to get by. Or the ones frying your chicken because you’re too lazy to cook your own dinner. Having worked in the corn fields as a teenager, I know that all the people picking your vegetables work hard – they may not be paid much, but they work hard. The doctors and nurses taking care of your aging parents, or you when you get sick, they work hard. The people teaching your stuckup little brats work hard. Pretty much, we’re all working hard. Even the people who are disabled, for whom just getting through the day is a struggle. Even if we don’t wear hardhats and dirty jeans.

Look, I gave you a warning at the top of this post – I’m angry. I am tired of the prejudice – implied and outright – of this healthcare repeal bill, and of the rhetoric around it, from strangers as well as those close. We are not second class citizens because we happened to get sick. We are not bad or immoral people because we happened to get sick. And we are not the cause of all of your problems!

While it may be satisfying to moralize and feel superior, are you really better off if 24 million people in this country can no longer afford healthcare? As you’re riding a crowded bus or flying in a crowded plane, are you better off if the person coughing next to you is not getting treated for their TB? Are your kids better off going to school with children who don’t have access to a doctor to treat their whooping cough? Or impetigo? Is our economy better off with the huge loss of productivity brought on by people too sick to work because they can’t go to the doctor? Or disabled people who will never join the workforce because they didn’t get the tools needed to help them when special ed is cut? Is our housing market stronger when people go into foreclosure because they had a medical emergency (no longer covered by their insurance)? Is our government stronger when the millions of dollars we pay in taxes are no longer collected because we’ve become too sick to work?

Personally, I happen to believe we’re all – as a society – better off if more people are healthier. But I guess that’s just me.

While you’re busy feeling superior, remember, we really aren’t so other. It’s not just us. It’s you. It’s people you know. It’s people you love. And, as I posted earlier this week on FB: Just to be perfectly clear, when you say “these people” don’t deserve healthcare, you are saying that I – Julie Goodale – deserved to die. That I still deserve to die. Fuck you!

Look, I gave you a warning at the top of this post.

Julie

 

Posted in AHCA, GOP, health insurance, healthcare marketplace, metastatic breast cancer, Trumpcare | 2 Comments

The End of Ski Season

IMG_2784

Ski season is definitely done. This is my view from my computer today. Rain, fog, thunder, no snow left. I know everyone else seems ready for spring, but I could use a few more days of skiing.

This was a great ski season! No, it wasn’t the best snow year here in the lower Northeast. We did have some great snow, but we also had periods of warm temps and rain. So why was this a great season?

This year, we did something new. I usually buy us a weekday pass – as musicians, we’re both busier on the weekends when it’s crowded, so we only go during the week. The weekday passes are much cheaper, and I usually buy them in the spring when they’re cheapest. But this year, we tried a new (to us) program: Windham Mountain’s 50+ program.

Windham is our usual Catskill Mountain hill. For the past few years, they’ve offered a program for people 50 and older. It’s 8 weeks of 4-hour group lessons every Tuesday, plus a weekday pass. It was a good enough deal that I thought, even if we couldn’t make it to many of the lessons, it was worth it.

Great idea!! We had a blast. And learned a lot. The groups were all pretty small, around 4-5 people at most. We’d ski for a couple hours, break for lunch, then ski a couple more hours. Often, people would quit early and we’d end the day with just 1 or 2 in the group.

R and I went with different groups. I started in a more moderate group because I didn’t ski at all last year, and with a lingering shoulder injury, I wasn’t feeling very confident. So I dug in, doing drills and trying new things, but mostly on easier slopes. After a couple weeks of that, as I started feeling more confident, I joined another group. With that group, I continued with drills, but the drills progressed to harder and harder things, and we did them faster and on slightly harder terrain. For me, it was a great balance between skills and drills, and just skiing. My instructor, and the guys in my group, all pushed me, and I like to think I became a better skier. This is my group.

IMG_2761

And because we had these lessons every week, we ended up skiing on days and in conditions we probably wouldn’t have otherwise. There were a couple of days of kind of crappy conditions – rainy or too warm and slushy – and we normally would have stayed home. But we went because we had a lesson. And ended up learning about skiing in weird conditions, and having fun. So even though this wasn’t an epic snow year, it was one of the best ski seasons I’ve had.

There were many things I loved about this program. First, obviously, is the skiing. Second, I started to feel just a little athletic again. After not being able to do very much running, no windsurfing, no climbing, not much of anything for more than a year because of a frozen shoulder, I no longer felt like an athlete. This got me a long way toward feeling back to normal again!

And finally, I love the idea of the program – older adults staying active, doing something they enjoy, and learning new things. There were people who just wanted to have some fun. Others, like me, who really wanted to learn and improve. I met a few people who were totally new to skiing – in their 50s, 60s, and 70s. One guy had been on skis for the first time in his life the week before the program started in January.

It’s this last thing that’s particularly special to me. I love that they have a program encouraging older adults to stay active and keep learning. OK, I admit to making some jokes about skiing with the old folks. And having a pass that said “Senior Program” on it did feel a little weird, because that’s just not how I think of myself. (but then I’d see someone in their 80s flying down a hill, a way better skier than me, and I wouldn’t care about any labels, I just wanted to ski like that.)

As a fitness trainer, besides my work with cancer survivors, I’ve also worked with clients with Parkinson’s, MS, partially disabled from accident, elderly, and even clients with dementia. Always, I strive to help people find ways to stay active, build strength, and have fun. Because I believe anyone, no matter their limitations, can move more and be healthier. Just because you’re sick, just because you’re old, just because you’re injured, doesn’t mean you can’t improve. It’s always possible to improve and to stay active.

So, I might not be the kind of skier I want to be yet. But there’s always next season – I’ve already signed up for the program for next year. Looking forward to more skiing with the old folks!IMG_2770

Julie

 

Posted in Uncategorized | Leave a comment

The Health of Our Care – The Very Best Ever in the History of the World, Or Not

So, it’s here, the GOP’s replacement plan for the Affordable Care Act. In my last two posts, I wrote a whole lot about pre-existing conditions. The GOP’s plan – potentially called the American Health Care Act, not really called The World’s Greatest Healthcare Plan Act of 2017 (that was the name of another potential GOP replacement plan, not actually chosen), but so far, no one quite knows what to call it – leaves in place the no pre-existing condition clause of ACA, sort of, so you’d think I’d be happy. I’m not.

It’s true that the new plan prohibits insurers from refusing coverage to anyone with pre-existing conditions (which can be anything from cancer, heart conditions, to high cholesterol, to eczema, to overweight, to backaches – it’s their call), as long as you don’t fall behind on payments and miss 2 months. Then you’ll get at least a 30% increase in premiums.

The individual mandate is gone. So now, young people, or anybody who’s feeling lucky can refuse to purchase health insurance. And when they get sick, and some of them will, or fall down the stairs when they’re drunk, or get hit by a limb on a windy day, or spill hot water on their kid while cooking, they will go to the hospital. And maybe they’ll be able to pay the bill. And maybe they won’t – because, after all, these are people who don’t have the money to pay monthly bills. But the hospitals will treat them anyway. And the hospitals just eat some of the cost themselves and pass some of it along to everyone else in the form of higher costs. So our costs will go up, the hospitals’ operating costs will go up again, causing many of them to close – again – especially small town and rural hospitals (something to think about for all those lamenting the rural opioid epidemic). But no one will be told they have to have insurance.

Replacing the mandate and its income-based tax credits is a new plan of tax cuts based on age – older people getting more of a cut than younger folks – and it’s a flat rate no matter whether you live in a market with higher premiums (like many rural areas, as well as NY/NJ). The problem is that insurers are now allowed to raise premiums based on age. The AARP estimates that adults in their 50s and 60s will see increases of 5 times current premiums or more – many thousands of dollars per year – which will not be offset by the small tax cuts offered in the plan.

In addition, there is nothing to keep insurers from once again jacking up premiums for sick people. One important part of the ACA was that 80% of premium cost had to go toward medical costs. Therefore, I knew that even if my premium went up, it was actually going to cover healthcare costs, not lobbying or executive pay. (As I’ve written about in the past, before ACA, my premium increases were going to pay for executive pay increases in the multiple hundreds of %. I don’t know about you, but I don’t get increases like that. If I’m lucky, I get a 2% increase.)

Other key provisions: funding for public health will be gutted (important for you next time there’s an outbreak of something in your area – or your kids’ schools), Medicaid will be gutted and the expansion halted and rolled back, and taxes which are helping shore up Medicare are gone (important for you younger folks who don’t want to pay for health insurance because this increases the likelihood that there will be no safety net for you when you’re old and do need healthcare). Insurers are welcome to go back to what amounted to scam policies – very cheap policies which covered basically nothing – the ones people who had never actually had to use were very happy with – the ones the lots of people discovered covered almost nothing only after they got sick. Under ACA, there was a minimum level that all policies had to cover. The plan does give big tax breaks to wealthy people, though, especially to insurance execs making over $500,000 (which is pretty much all of them). And it gives a big tax break to the tanning industry – an industry which is based on an activity known to cause cancer. and lifetime caps will be back.

Were there problems with ACA? Yes, certainly. But, according to the NY Times, only 3% of Americans have actually seen big increases in their premiums with ACA – 3%. This plan will hurt lots of Americans. This plan helps a lot of wealthy people and corporations. This plan will damage the ability of Americans to afford health care. The rules apply to the individual market, but will affect employer plans as well – lifetime caps, no covered routine exams/scans, premium increases going to cover company expenses rather than healthcare….

So much has been said about “access” to healthcare. Well, access doesn’t do a damn bit of good if you can’t afford it. This plan will break the bank for many of the people who need it most. I think it’s time for me to tell a little more of my experience before ACA, my experience with the “market” for individual health insurance.

I had insurance (sometimes when I was young doing things like always walking to work so I could save subway fare, or doing my laundry by hand in the bathroom sink – all so I could afford health insurance as well as rent and food, you know, young struggling musician sort of things). I got hit by a taxi, resulting in a spinal cord injury. I recovered, with a lot of PT and surgery – all covered because the driver had insurance which is mandated for drivers (and no one seems to object to that insurance mandate). Then I got cancer. And I got treatment. And I didn’t die.

But my premiums started going up. And up. And up. I recently pulled out my old taxes. While I was sick, my medical costs were around 50% of my income – the larger portion being out-of-pocket expenses. Within a few years, my medical costs went up to 60, 70, 85% of my income – with the balance of the expense being insurance premiums rather than other expenses. And finally, my healthcare costs went up to around 118% of my income. Yes, that’s right. My medical costs, and it was mostly just insurance premiums, were more than I made (granted, I had lost a lot of work while I was sick, and the economy was down, but still…). I was healthy by then, no longer in treatment, but I had had cancer.

That is not sustainable.

This next thing is really hard for me to say, to write, publicly. I was lucky, I had some savings, and I lived with someone who was able to shoulder our shared expenses. But – and here it is – if I hadn’t happened to live with someone, I would have either been homeless or dead. I pride myself in my independence, in my self-reliance. I can take care of myself. But I was fully dependent on the ability of someone else to provide me with a place to live and eat. Because all of my money and then some was going to my health insurance premiums. If I weren’t so “lucky,” I would be homeless or dead. Homeless. Dead. Or I would have sold all my belongings, gone on public assistance, and not earned money, not paid taxes, not contributed to society in the same way I have. Homeless. Dead.

That is the reality of what the market was like for individuals before ACA. That will be the reality again for millions. And that is why, so far, the AARP, and all major associations representing doctors, insurers, nurses, hospitals – basically, anyone who actually cares for sick people – have come out strongly against this plan, saying they cannot support a plan which so clearly hurts the vulnerable in our society – the sick, the poor, and older adults. So, no, this does not make me happy. My premiums will likely go up many thousands of dollars, but I’ll probably be OK, I’ll have insurance – and I have savings. But many millions of Americans will be hurt. Many will have to go without insurance. Many hospitals and doctors will still care for them. And then many of those hospitals will close.

In the meantime, members of the GOP have said people just need to not buy cellphones (I might point out that a new iPhone would only have covered around 1/4 to 1/3 of my pre-ACA premiums, so not sure what that would do), that people who have been sick are like houses burned to the ground, that it’s good for America if more people are uninsured. But I guess their golfing buddies are happy.

Oh, that was snarky, wasn’t it? Too bad, I’m tired of being polite. I am not happy.

I almost didn’t write this post. Yesterday, I was too depressed. And too weary. I know the insults that will be hurled at me because of my opinions on this policy – because I’ve heard them too many times before. Yesterday, out for a hike, I said I wasn’t sure I was up for that again, not that I was afraid of the trolls, just weary. And that’s not good.

So I’m writing, and I’m being snarky because the callousness and hypocrisy of all of this. I’m writing, and I’m ready for the insults, the names, the threats. I’ve been called a bitch, stupid, stupid fucking bitch, know-nothing, fool, idiot, leftist, libtard, should have died, am not a real woman because I had breast cancer…. I just wasn’t sure I wanted to wade back into that again. But I am. Because this is a bad plan. Because it is unacceptable to me that, once again, people who have had the bad fortune to get sick will have to pay more than their income for insurance. That people will have to choose between food for their kids and their own medicine. That people will lose homes because they got injured (remember, 50-60% of foreclosures in the housing crisis were directly attributable to healthcare – people who might have gotten by couldn’t because they or their kid or spouse got sick or hurt).

So bring on your worst. Threaten me. Call me names. No matter what, I will continue to say this is bad policy. This damages Americans. This will damage the economy. This will damage American families. This bill will hurt people while the wealthy get an extra vacation.

But if you’re interested in reading actual facts, I recommend you check out the Kaiser Family Foundation for a whole lot of detailed info. Or read the AARP’s letter to Congress. And here’s a good overview from NPR.

Julie

Posted in health insurance, Health Of Our Care, healthcare costs, healthcare marketplace | Tagged , , | Leave a comment

The Health of Our Care – Good Luck

I find myself unable to write my usual end-of-year post. You know, the take good care, be good to yourself, and be active post. I can’t write that at the close of this year because all I can think of is healthcare.

We’re at a delicate point in this country’s history. Anger and uncertainty are high on all sides. But the one thing we know, the one thing that has been made abundantly clear – if you’ve paid any attention to the things elected officials have said – is that the new government will dismantle the Affordable Care Act, or Obamacare. And they won’t stop there. They will also begin disassembling Medicare, Medicaid, and Social Security. How do I know that? Because they’ve said that, again, and again, and again.

Who will this affect? Everyone. Initially and most obviously, it will affect those of us who get our health insurance through ACA – like me. It means that the 10s of millions of people, many of them children, who got insurance for the first time will go back to being uninsured. Those children will go back to being largely shut out of medical care, or at least effective medical care. It will mean that the rest of us will go back to the completely unaffordable individual market of the insurance companies (see my last post for more on that). It means that very many of those caught in the opioid epidemic will lose any access to treatment. They may feel like there’s not enough help now, but when they have no insurance and what insurance is available has little or no substance abuse or mental health coverage, they’ll find a whole new level of hopelessness. And most importantly, we’ll go back to insurance companies excluding people who have been sick.

I’ll probably be OK. I live in New York, which has long had a law that insurers could not deny coverage based on pre-existing conditions if you had coverage with another insurer within 6 months. So I’ll be OK – might not be able to afford the coverage, but I can get it. But those of you in other states, sorry, you’re probably screwed if you’ve ever been ill.

But it won’t be just us who feel the change. All of you with your group employer-paid plans will feel the changes, too. Insurance companies will be free, once again, to raise rates to cover things other than your healthcare charges – things like their bad business losses, their bad investments, and their MASSIVE executive pay hikes (like 200% increase in a year). One aspect of ACA was that insurers had to spend 80% of premiums on healthcare, not executive pay or overhead, ensuring that your premiums went to pay for your healthcare, not the CEO’s yacht.

Other changes that will affect you group plan folks: insurers will no longer have to cover annual wellness visits for you or your kids, no longer cover the cost of regular screening like mammograms or colonoscopy (which means a whole lot of people won’t get them), they will go back to charging women more for insurance than men, they will go back to not covering mental healthcare.

And here’s the big change coming for all: lifetime caps. ACA abolished the lifetime caps; they’ll be coming back quick. Most plans pre-ACA had lifetime caps of $1 million. Some had caps far less than that – I was offered plans which could hardly even be called insurance that had maximums of far less than $1M. Now a million seems like a lot of money; it’s easy to think that’s not important. However, anyone who’s had a serious illness or injury knows how quickly healthcare dollars add up. A year or two of care can easily get up to $5-6-700,000. I never figured out what my total with Aetna was, but I was definitely getting close to their million cap. And then you’re kicked out, with a pre-existing condition, and no one else will take you.

But we’re told ACA will be replaced with something much better, something great. And no one will tell us what that will look like, how exactly it will operate. We’re told it will be a great market system.

Well, if we’re going back to a purely unregulated market system, I think we all should be in it. The definition, the whole economic point of insurance is spreading the risk of large emergencies over a large pool – each person pays in, the money is spread throughout the whole pool, and that pool of money is used to pay claims. By definition, some of us will pay in and not use the insurance, not have the need of payment; and some of us will pay in and end up using far more than we put in. But the risk is shared by all. It’s the same concept as homeowner insurance and natural disaster, or auto insurance. If it’s truly a market system, all people must be in the same pool, otherwise this talk of market is just bullshit. That means all the group plans must be invalidated. Everyone must be in the same pool. All those employer group plans – gone. Employer-based health insurance began in the Depression and took off in WWII. During the war, Congress had put limits on wage hikes in place, along with rationing supplies. Employers needed more workers, so they offered insurance in place of higher wages. Plus, insurance payments were not taxable. There’s a nice little history here, in a piece from NPR. So, if we want a market system, dump all those plans. Companies should simply pay their employees a fair wage, employees will get higher taxable wages with which to pay for their own insurance.

And all of those government jobs with insurance? Insurance has to go – back into the market system. That means all those federal workers will need to be paid a higher wage, which will be taxable, and they can buy their own insurance. That includes military. I get that in combat they should have medical care covered. But when they’re back home – market. And that certainly applies to Congress. They have very generous packages. If we’re going to go to a market system, we all have to be in the market or it’s not a true free market. Congress, get your own damn insurance. Now don’t worry, they’ll be fine. The men insisting on this change are all rich guys, they’ll be able to afford their own insurance. They won’t have to worry about “shopping for the best value.” They won’t worry about which hospital they can go to when they’re having a heart attack, or when their child has stopped breathing. They have plenty of money for their own health insurance – much of that money coming from drug manufacturers and insurance companies. In fact, Tom Price (trump’s pick for Health and Human Services Secretary) has made piles of money buying and selling healthcare stocks while working on healthcare in Congress (reported in Wall Street Journal, Fox News, and here’s a link to Politico, along with some other healthcare info). (I’m pretty sure this is the sort of thing that in the banking sector would be called “insider trading” and would land you in jail, but I digress.)

My point is that, if we are to be in a “free market” system for healthcare, if we are to have any semblance of fairness, then we ALL have to be in the system. If only some of us are in, it is not a “free” market, it is not fair. It’s only a sucker’s market for those of us who don’t have the right job. That may be what they’re going for…my brother-in-law has said in the past that I didn’t deserve affordable health insurance because I chose to be a musician instead of joining the Army – note: it wasn’t that I didn’t deserve “free” healthcare, but that I didn’t deserve “affordable” care, because I had the wrong job (even though I pay taxes and contribute to society). So maybe that is the point these leaders are trying to make – that some of us simply don’t deserve healthcare, that only certain people, only the “right” people deserve healthcare.

And this is just ACA. Medicare, Medicaid and Social Security are next on the block. Why do I think that? Because they’ve said so, flat out. So all the programs you might have been able to turn to if you made bad investments, spent your money on Christmas presents or new cars instead of saving it, had a child with a disability, or just had a string of bad luck, will be gone. Sure, the plans may be flawed, but they helped. You’ll be on your own now. Don’t screw up!

Well, maybe I will turn this into the usual New Year’s post….If trump, Tom Price, Mitch McConnell, and Paul Ryan have their way (and why wouldn’t they since they have complete unfettered control?), the safeguards many of us have expected would be there in an emergency will be gone. We’ll be on our own while they continue to collect money from corporations and wealthy donors. So take care. Be good to yourself. Be healthy. Do everything you can to lower your chances of getting sick. OK, you can’t do much about genetic issues, but you can lower your risk of many diseases through lifestyle choices.

So, get more exercise. Move more, be more active. Eat healthier. Don’t smoke; if you do smoke, quit. None of those things guarantee you won’t get sick, but they will help reduce your risk. Good luck.

I truly wish you, wish all of us, all the best in 2017. Good night, and good luck.

Julie

 

Posted in benefits of exercise, cancer risk, exercise and cancer, health insurance, Health Of Our Care, health risks, healthcare marketplace, healthy choices, healthy lifestyle | Tagged , | Leave a comment

The Health Of Our Care – Skin, Bones, and Blood

This post will not be of interest to my foreign readers, it’s all about American healthcare. And this is a subject that no one from around the world can understand. They can’t figure out how it’s such a problem in a developed country. They can’t figure out how by many measures, our healthcare system has been no better than third-world countries. They just don’t get it. So, sorry, this one is not for you.

Post-election 2016, I think it’s time to revive my “Health of Our Care” series. The second place finisher, the man who will be president, has vowed repeatedly to repeal the Affordable Care Act – Obamacare as President Obama’s critics dubbed it. And the people in control of the House and Senate have as well – they’ve made it their goal since before it was even written.

In the days since the election, the incoming leader has walked back from his plans to completely repeal it. He now says he’ll just “fix” it – whatever that means. So we don’t know what the future holds for us.

The many millions of us who have insurance through the ACA have been on pins and needles, or just in a flat out depression, since the election. Especially cancer survivors or anyone with a long-term health issue. Because one of the most important parts of the ACA is no pre-existing conditions – insurers could not deny us coverage because we were sick.

Now we’re hearing that perhaps that will be left in place. And maybe some other elements. But it will somehow – all completely vague – move back to more of a “market” system. Of course, we have no idea what that will look like, we just have to wait and see what the “great healthcare” will be.

So, I thought I’d take a moment to look back at what health insurance through the free market looked like for those of us who didn’t have access to group plans through employers. Just in case you’ve forgotten.

I had an HMO with Aetna for many years. It was expensive, but I was pretty happy with it. Once I was diagnosed with breast cancer, they began raising my premiums. And they started to routinely deny coverage of things I knew were covered. Once I called and complained, they would cover the charge, but it became a regular occurrence. And then my premiums would be raised again. And again. 20, 27, 30, 34% increases every year. And I paid. Because I had no choice. I was in the middle of cancer treatments. Between premiums, co-pays, and out-of-pocket expenses, I was paying somewhere around $18,000 – 22,000 a year. For one person.

And I felt grateful. Because I lived with someone who could cover more of our housing costs – I wasn’t able to work as much as I’d have liked to when I was sick. And because when I would call around to other companies, I’d be told they wouldn’t cover me.

Lots of other people were not so lucky. I personally know people who lost their homes because of healthcare costs, not having someone who could make up the difference for them. I personally know people who had to choose between food for their kids or drugs to fight their cancer. I personally know people who had to tell their kids they couldn’t go to college, not because they had spent their money buying the latest iPhone for their kids instead of saving for college, but because they had to spend the college money on health insurance and hospital payments. I personally know people whose insurance policies were canceled for no reason, leaving them unable to get other insurance because of pre-existing conditions. And I personally know people – lovely women and men, hard-working, mothers, fathers, children – who died, unable to get the care they needed.

Please remember also the housing crisis. Remember? Caused by the big, bad banks? Except that, it turns out, it wasn’t completely caused by the big, bad banks. A study by researchers at Harvard (Himmelstein & Woolhandler) found that 62% of home foreclosures in 2007 were directly attributable to healthcare costs. And a study by Robertson, Engelhoff, and Hoke in 2008, found that 49% of all home foreclosures in the housing crisis were the result of medical problems.

That was the world of American health insurance in the free market. At least for those of us in the individual market.

With my insurance going up 20-25% every year, I decided to investigate why (my post about all the details I found is here). The common reason given by big insurers was rising medical costs and losses in the individual plans. And that we were all simply using too much medical care. If we would just help them control costs by not going to the doctor, it would all be fine. What I found when I downloaded the company’s SEC financial filings was interesting. Their medical costs had indeed gone up, but only around 15%. Their big losses were not in their individual plans, but in their group plans. They were increasing my premiums to offset losses from their group plans – because they could. They also needed to raise my premiums to cover executive pay increases, which ranged from 40-50% up to almost 200%. Every year. They also spent many, many millions of dollars on lobbying members of congress – the same people who now want to return our healthcare system to the “market”, like before, when insurance execs got 200% increases in compensation. (One of the important aspects of the ACA is that insurers must spend 80% of premiums on actual healthcare, not overhead.)

When I could no longer afford my Aetna (evil empire) plan, I had no choice but to sign up for an HSA – because no other insurer would accept me. With this plan, I had a high deductible, $10,000. I had an account that I could save money for medical costs. I earned interest in the account, and paid my medical bills from that. There were limits on how much I could add to the account in a year. And on top of that I paid a lower insurance premium. For me, it started out around $450 per month, but quickly rose to $700, $800, nearly $1000 per month, all while paying all of my bills myself. With the account, they charged me a fee for opening it, charged me another fee for maintaining it, another fee if my balance fell too low, and when I finally wanted to close it because I had a great policy through the new ACA, they charged me $200 to close the account. The HSA was a really great plan for the bank!

That’s what free market insurance looked like for those of us in the individual market. Forty-six million people were uninsured. Anyone with pre-existing conditions couldn’t get insurance. And we were all going broke. Because of this, the cancer community (and lots of others) have been freaking out since the election. The ACA was far from perfect, but for millions of us it was literally a life-saver. We owe our lives to Obamacare. Now we’re scared. We’re angry.

We still don’t know what their plan is because they don’t have one. We just have to wait.

One of the common ideas back then was that we – the users of healthcare – were profligate. We were wasteful. We were told again and again that we had no “skin in the game.” Well, we do have skin in the game. Those of us who have been through the system before, those of us who are sick, those of us who suffer, those of us who went broke, lost homes, gave up food, gave up medicine, whose children suffered, we have skin in the game. We have far more skin in this game than any of you politicians telling us how great this market system is going to be.

We have skin in this game. And bones. And lungs. And blood.

And if you – Speaker Ryan, Senator McConnell, Mr. trump – send us back to that completely unworkable system, we will start dying. Our blood will be on your hands, our dead bodies on your heads. And you will choke on the stench of our rotting flesh.

To the rest of us: good night and good luck.

Julie

(you can read all the Health of Our Care posts here.)

 

 

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Cinnabar and Other Shades

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Carrot, pumpkin, cinnabar, tomato, persimmon. For the past few weeks I’ve been reveling in shades of orange. Nearly every day, I’ve gone out into the woods to walk, to smell the slight funk of decaying leaves, to watch the animals scurrying around as they prepare for winter, but mostly to soak in the mutable color.

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I love hiking in the fall. Actually, all seasons have their magic, but right now I’m feeling the fall. Friends are probably tired of my photos popping up on FB, but I don’t care – it makes me happy.

img_2552Getting out for even a couple miles in the woods is good for the spirit. Each day I walk into a slightly different hue, a changed landscape, as the ground shifts from green to brown, bare to mounds of yellow/red/orange/brown, soft to crunchy. Some days I cover many miles, climbing up for a long view across the valleys. Other days I stay down in protected glens and feel wrapped in color. A few times I’ve taken a magnifying glass with me to examine the world closely. And then there are days when I just sit and listen to leaves fall.img_2555 img_2557

Yesterday I hiked a route I hadn’t been on for a long time. I wandered through one of the valleys which had burned a few years ago when the forest burned to within less than a mile of my house. (note: if you are a smoker – and you shouldn’t be – DO NOT toss matches or cigarettes out the window or drop them while out hiking!!) There was a section where the fire had been most intense. Everything had burned, tree roots had burned underground, nothing was left, even the lichen had burned.img_2574

But the amazing thing was that within a few weeks, after a gentle rain, weeds began to pop their heads through the charred crust. Within months, grasses were filling back in. And now, five years later, young trees are dropping their rusty orange leaves and blueberry bushes and young mountain laurel are covering the hills again. Soon, the laurels will be big enough that my springtime hikes through that valley will be bathed in pink and white.

Julie

Posted in change, focus, fun, gratitude, hiking | Leave a comment

Truth

I’ve got a secret. It’s time to open up and tell the truth.

For the past many months, I’ve been dealing with a serious shoulder injury. Without falling or doing anything that I can remember to hurt it, I ended up with a shoulder trifecta: frozen shoulder, small rotator cuff tear, and arthritis.

Why was I hiding this? Because I’m a professional violist and a personal trainer. Unfortunately, I’ve learned that in a very competitive field, perception matters. Even though I was able to play everything I was hired to play (I just didn’t feel great doing it), I was afraid that if people knew I had shoulder pain, they would choose not to hire me. I learned that when I was in cancer treatment. No matter how much I told people I was working, and only accepted work I was confident I could manage, some people stopped hiring me. I know there was nothing mean-spirited about this, most just had my well-being in mind, but still, I lost work. (There were others who stuck with me, in spite of my bald head, and I am eternally grateful to them!!!) So I’ve learned that perceived weakness can be detrimental to my bank account. And on the fitness trainer side, who really wants a trainer who can’t demonstrate exercises. Besides, I’m not the type of trainer to just tell people what to do and stand by, I do the exercises right alongside.

It started bothering me last winter. I kept working to stretch and keep it moving. I got a lot of massage and acupuncture, worked with an Alexander Technique teacher. Those things kept me functional, but not improving. Finally after several months, I decided it was time to see the doctor since it was clearly not something I could fix myself. Plus, since I was having pain in my collar bone and shoulder on the side I had breast cancer, I started to worry that it could be cancer metastasizing the bones.

Lots of scans and blood work led to an all-clear on the cancer, just routine shoulder issues. Even though it was severely impacting my life, frozen shoulder was a fixable thing. I’m sure my orthopedist has never had someone so happy to be told they have a frozen shoulder!

This is why I haven’t been as active as normal. No climbing. No ultramarathons. In fact, I’ve had difficulty running more than a few miles at a time because running irritates my shoulder.

But I haven’t been doing nothing. I’ve been working very hard on my shoulder. It’s getting a whole lot better. I’ve got good range of motion again, and now am working on rebuilding strength.

Frozen shoulder is a pretty common problem after breast cancer surgery/treatments. I didn’t have that trouble after my mastectomy, but because of my surgery, I knew early on some of the stretches and exercises to do. I started out doing a lot of wall climbs: standing next to a wall and slowing crawling my hand up the wall. It seems like such an easy thing to do, but can be such a challenge. At the beginning, I couldn’t get my hand much above eye level. But I kept working it, every day. The other thing was hanging arm pendulum and circles. Bend over from waist, lean on a chair or table for balance. Let arm hang straight down from shoulder. Gently swing it up and back, like a pendulum. I would do this many times a day, up and back, also side to side. Then gently swing arm in small circles. This helps to get a little movement into the shoulder joint in a non-stressful way.

But that wasn’t enough. When I got back from playing opera in Saratoga, I started physical therapy. I went for my assessment and when the PT heard that I did some work at a fitness trainer with cancer survivors, she said, “Oh, then you probably don’t need us at all, you know most of this.” I laughed and said, “Yes, but you know more.” Of course I know how to work range of motion, then build up gradually, beginning with no weight. But I also know the value of working with someone who knows more than I do, and someone who can check my progress.

For the last couple of months, I’ve been working on improving my range of motion through gentle movements. Slowly, once I had better range of motion, I started building strength, beginning with movements with no weight. Over weeks, I increased the number of repetitions of all the exercises. A few weeks ago, I started adding very light weights. When I would add weight to an exercise, I would drop the repetitions down, and gradually increase again.

I think tomorrow will probably be my last day for PT – I graduate. It’s still a long process to build my strength back to normal, but I am functional. And physical therapists – good ones – are totally my heroes!

Whether the result of surgery, illness, or injury, recovery from a serious issue is not fun. It’s difficult and frustrating. The exercises are hard and can be painful, even as they seem so stupidly easy. It’s easy to get frustrated…”I can’t believe I’m struggling to raise my arm to shoulder height, I used to climb cliffs!!” And there are days that it just doesn’t feel good. It’s so tempting to say, “it hurts, I don’t want to do this.” But I knew that was the only way to get better, that the short-term discomfort was the path to long-term functioning. And that was the only way I was getting back to a normal functional life.

Step by teeny, tiny step. It’s not perfect, but it’s the only way forward.

And again, hurray for physical therapists!

Julie

 

Posted in breast cancer, breast surgery, range of motion, recovery from surgery, rehab | Tagged | Leave a comment