Author Archive

Apr
07

The Checklist

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This document has its own page on the site as of yesterday, so I thought I’d take advantage of #HAWMC to pimp it toward the e-patient and health activist community.

It was debuted during my talk “Dating Tips for Doctors & Patients” for internal medicine grand rounds at Walter Reed/Bethesda Naval Hospital on March 29. I put the Checklist together because (a) I know how much clinicians love a checklist and (b) because, printed front-and-back on one sheet of paper, this document could kick off some great relationships, or repair broken ones, between doctors and patients.

Share it, share your thoughts about it.

Checklist for Clinicians image

Checklist for Patients image

 

Apr
06

Haiku. You?

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haiku tagThe brain creates thoughts

Yet rarely thinks of itself

Un-self-seeing sentience

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Cancer cells creep in

No light cat’s feet involved here

Only crawling death’s hands

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Some say health is wealth

Yet wealth can be penury

If health is absent

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Breasts are beautiful

Yet can become pure terror

At a small cell’s whim

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Haiku does not come naturally to me – I tend more to prosaic bursts of thought with much syllabic activity. I do enjoy a challenge, though …

 

Apr
05

Lighten up. Take flight.

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I was almost 11 years old when my brother was born. I’m the one of the three of us (me, middle sis, little bro) who has had the biggest health adventure (cancer) … at least until early March of 2012.

One of my favorite memories of my brother as a little boy centers on a few-week stretch of time in the spring of ’69 when he was almost six, and I was about to turn 17. We were living in Coronado, the island village in San Diego Bay, on Alameda Avenue. The kitchen breakfast nook had a window that looked out on the driveway, and mom had put up a hummingbird feeder on the eave next to the window looking to attract some of the flock of hummingbirds that make the island home.

We hit the daily double that year.

The window sill was about five inches wide. There was an ample source of food – the feeder. A hummingbird pair seeking a perfect nest placement couldn’t do any better than that. We saw the nest at breakfast one morning – a small, perfect bowl for tiny hummingbird eggs – and my brother was riveted. Every morning, he would literally leap out of bed, race to the kitchen, drag a chair toward the window, and look to see if the eggs had hatched.

One morning they had.

We watched the hummingbird mom feed her chicks, we watched her give them flying lessons – a nail-biter series, trust me – and then we watched them all fly off to start the cycle themselves. Fly, mate, hatch, fly.

I had always liked watching hummingbirds. Since that spring, I’ve been in love with watching hummingbirds, because it brought back the memory of a little boy’s joy at watching a story unfold outside his window.

That little boy is now a man, the father of three fine sons and a fierce and lovely daughter, and husband to a remarkable woman whom we’ve long been glad we convinced to join our family (it was a team effort). He has always been healthy, has stayed in good shape, has enjoyed everything life has thrown his way.

And he faced a huge, out-of-the-blue challenge in March of this year, just shy of his 49th birthday.

Coming home from a business trip in San Antonio, he had a seizure in the airport. By the time his wife could get to Texas, the diagnosis had been determined: benign meningioma. Benign = good.

Well, mostly.

When, three weeks to the day after that airport seizure, they sawed open his skull to remove the tumor that the neurosurgeon had tagged as “massive”, they faced what was then tagged a “nasty, bloody mess”, and subsequently revealed as something that would have killed him within six months had it not been discovered.

Yay for seizures in airports.

Several hours later, he was in recovery, where his wife reported he was sarcastic. The following day he added perky snarkiness. No cognitive impairment there – he’s always been funny, snarky, and sarcastic.

Another of us has joined the ranks of engaged customers of healthcare. He made notes on some improvements to the monitoring gear he had to juggle to and from the bathroom while he was in the ICU – he was ambulatory, but literally festooned with telemetry devices.

He sang the praises of the hospital’s care team. He even praised the food. And he left the hospital four days later. He’s on the road – not a short one, but not a marathon either – to recovery.

I don’t know about him, but now when I see a hummingbird, I’ll see the joy on a little boy’s face … and the lightness of being that is now within that little-boy-now-a-man’s spirit at having dodged a bullet.

Life is sweet. Lighten up. Take flight.

Hummingbird

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Day 4 of #hawmc. Prompt is “I write about my health because … ”

I don’t write about just my health because … well, how boring would *that* be? Very.

I write about health and healthcare for all of us: me, you, ever’body. Health is our life, it’s what we do, it’s how we behave, it’s how we care for ourselves, it’s how we live life to the fullest.

good healthMany of us don’t get a chance to dance, at least not on our own two feet.

Many of us don’t get to sing, because we have no voice to raise.

Many of us don’t get to laugh, because our ability to see and react/interact is not present for one reason or another.

If you can sing, if you can dance, if you can laugh, if you can enjoy a great time over a meal with friends and family … rejoice.

Help someone who can’t do any/all of that find some joy if you want to know what “stupendous” feels like.

There is one guarantee in life: it’s 100% fatal. None of us gets out of here alive. Be as good to yourself as possible. Help others be as good to themselves as possible.

Eat good food, drink clean water, enjoy your body to the extent you can – surfing the North Shore of Oahu or just making it across the room. Whatever your limits are, test them. Stretch. Reach.

I write about health because health is life. Healthcare starts within our own heads and hearts. It’s not something that happens “over there” in a healthcare facility. It happens to you every day in how you think about and treat yourself.

I write about our health because I want to make a difference, to help drive some positive change within myself and within anyone else who might see value in what I share.

I’ve gotten enough feedback to know that I’m accomplishing my goal. Which makes me want to stretch further.

Onward.

Apr
03

Common sense: it’s a superpower

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Today’s #HAWMC post prompt: Superpower Day.

It’s suggested that we share what our superpower would be, if such things existed. I had been thinking that my superpower would be the ability to persuade anyone, instantly, to make the changes necessary to create a healthcare system that works.

Then this showed up in my Facebook news feed:

common sense

Thanks to my friend Torksi Dobson-Arnold for sharing.

How much simpler would healthcare – and LIFE – be if we all used some common sense? Don’t expect fixes to come from without. Look within and ask what makes sense, what simple steps would resolve the issue, what small sensible action would move the whole game forward?

It’s not rocket science. But sometimes it *is* brain surgery. However, even in rocket telemetry and gamma-knife neurosurgery, common sense must prevail. Don’t reinvent the wheel. Just keep that wheel rolling.

Common sense. It’s a superpower we all have. Let’s use it.

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“There are no guarantees in medicine, other than that there are no guarantees in medicine.”

no guaranteesThat’s actually my own quote.

Today in the WEGO Health #hawmc challenge – 30 days of posts on health activism, one each day in April – the prompt sheet says “Quotation Inspiration”.

I’m sharing one of my central tenets, something I say constantly to both clinician and patient audiences. Because there are no guarantees in medicine. There are only great attempts at discovering answers, followed – in most cases – by satisfactory outcomes.

It’s not rocket science, but sometimes it *is* brain surgery.

Ask yourself how much you expect your healthcare team to do for you. Take a long hard look at what you are willing/able to do for yourself. Both sides of the healthcare equation need to take responsibility for the outcome, and admit when there’s nothing they can or will do to advance the cause.

Apr
01

How did I get here?

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This goes beyond the question posed by Talking Heads in “Once in a Lifetime” (a personal all-time fave). And it’s most definitely because of many-in-a-lifetime events.

big mike bourbon betty and junie d 1953First, let me introduce you to Mike and Betty Casey (Mike’s in the center, and Betty on the left, of the picture). The woman I knew as Aunt Junie (no blood relation, but much connection nonetheless) is on the right, and Junie’s husband Ted took the picture.

Yes, those are cigarettes. And yes, those are cocktails. It was 1953, and both were socially de rigueur, particularly in the subset that Mike & Ted belonged to: Navy fighter pilots.

I learned a lot about health, healthcare, managing illness, and end-of-life planning from all four of these people, but most particularly from Mike and Betty. My parents.

Mom (Betty) had a rare pituitary tumor that went un-diagnosed for several years as doctors – all male – patted her on the head and told her that the headaches and visual disturbances she was having were all just menopause.

In 1979, the new doctor at the US Embassy in London (where Mike was the FAA rep for the North Atlantic), who was a woman, asked if anyone had ever taken an x-ray. They hadn’t. She did. Tumor discovered!

The aftermath of the surgery was that mom couldn’t see to drive, and was on cortico-steroids for the rest of her life. She was OK with that, and felt lucky to have been diagnosed before the tumor grew enough to give her a frontal lobotomy.

Mike was dx-ed with Parkinson’s in the mid-’80s. He learned everything he could about his disease, and stayed on top of research. He asked a lot of questions at his neurologist visits. He joined the Parkinson’s Foundation. He even became a vegan for a while – a huge behavior shift for a very enthusiastic omnivore.

I advocated for both of them at various points through the ’90s, when they had hip replacement (Mike) and other issues (Betty).

They wrote very clear advance directives in 1992, and made sure that we (the kids) knew their wishes and had copies of the documents.

In the last two years of their lives, I found myself having to advocate for them almost daily, and managing their transition from independent living to assisted living to a nursing home, always together and always connected to each other.

They died 29 days apart at the end of 2002.

What I learned from them is that your health is your responsibility, and that you must ask questions and work to understand the answers. If the doctor you’re working with isn’t working with you, you need to find another doctor. And if you need help, you need to seek it out.

And you always have to be ready to surrender to the process. Death is part of that, and I sat holding Mike’s hand for two days as he took the final journey to whatever comes next.

I’m a health activist and e-patient because I am the daughter of e-patients.

It’s in my DNA …

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Mar
27

Is it warm in here?

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I’ve been quiet for a while. Been doing my one-armed paper-hanger imitation – in a good way – which has taken up too much of my time and attention.

She’s baaaaaaaaack!

frustration reliefAnd she’s almost 4 months overdue for her annual mammogram. Yep, a breast cancer survivor is late for her mammo – but it isn’t due to lack of effort on her part.

Here’s the challenge: I have the money in hand for a diagnostic mammogram. However, there is *not* enough money in hand for a specialist visit to order said mammogram. And since your (not so) faithful correspondent here has no health insurance – thank you, cancer, you rat bastard – that’s a wrap.

My frustration is magnified by my certain knowledge that the reason the mammogram has to be *ordered* is that said order means that the insurance company will pay for it when it’s billed.

Of course, since I have no insurance, that’s why *I’m* paying for the mammogram. But I can’t get a mammogram, since there’s no order for said mammogram to ensure insurance payment for same.

Crazy yet? Yep, me too. I’m also totally steamed … which is why it’s warm in here.

We have created a healthcare payment system in the US that flies in the face of logic. I’m not the only one who thinks so, either. My buddy e-Patient Dave is banging away at some of the same issues as he tries to be a responsible healthcare customer. I’m on record with what I think are some valid health payment reform suggestions over on Disruptive Women in Health Care.

And then there’s the ever-epic Jonathan Rauch article in National Journal that became an also-epic YouTube video exploring the issue “If Air Travel Worked Like Health Care”. All I have to say is … GAH!

On both the get-a-mammogram issue, and on healthcare in general. As the Supremes hear oral arguments on what’s called either Obamacare or the Patient Protection and Affordable Care Act (depending on whether you think health insurance is something we all *should* buy for ourselves), it might be time for all of us to face some hard facts.

The most basic of which is: until we start acting like customers instead of meat puppets, the healthcare delivery system in this country will be stacked against access and transparency.

With me? Think I’m nuts? Spill your guts in a comment!

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