Carly Simon, Ketchup and an Advocate’s Secret Sauce

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Many readers of this blog (members of The Alliance of Professional Health Advocates) know we’ve been burning the candle at both ends trying to complete the build of the new APHA membership website.  Short of raising my two daughters, I think it’s the biggest project I’ve ever undertaken – just enormous – hundreds of resources and thousands of pages – and I’m happy that it is now complete! (Or at least as close as it will ever be – these things are never truly complete.)

Along the way, I’ve learned a few lessons about how to approach the work that can help you, too. And here is the bottom line to those lessons:

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Like Putting Ponze in Charge of My Retirement Savings – a Rant

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I live and work in Florida now. For the first time in my adult life, I live in a state where there’s a real possibility that my vote in the upcoming presidential election will make a difference. As a result, when I sit down to watch TV in the evening, I see a constant barrage of the most objectionable commercials. This candidate bashing that candidate. “Facts” that aren’t facts. Claims that have been disproved over and over again. Detestable.

You may be surprised to know that THOSE commercials aren’t the ones that upset me the most!  In fact, I no longer even hear or see them. I sort of gloss-over, or just get up and do something else.

<Beginning of Rant>

I’ve noticed, however, that during the past week, a new sort of horror has crept into TV commercial-dom.  That is – health insurance plan commercials, heralding the arrival of open enrollment, and featuring all new ways to dupe the public!  THOSE commercials are the ones that upset me even more.

Why?  Because they feature smiling faces, they make claims that they have “thousands of doctors” in their network (they all do, or they wouldn’t be in business), or that people with their insurance can get free preventive care (we all can – it was mandated by passage of the ACA/Obamacare), or that their plans are low-cost (no they aren’t – none of those plans are low-cost), etc.

But the part that really fries me – and the impetus for today’s rant – is one insurer’s claim that their customers can enjoy free consultations with the insurer’s “care managers“… As if that is some benefit to them!


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Of Heroes, Trust, Discord, Arrogance, and Karma – Part II

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Last week I shared with you two stories of my physician heroes, why they are my heroes, their relationship to my work in patient empowerment and patient advocacy, and why you, too, should emulate their actions; their professionalism, their behavior, and the actions they each took to buck a dysfunctional system.

It’s all good, and true to karma, what went around came around – today good comes back to them. They both have stellar reputations within the community and among other physicians worldwide. Well-respected. Well-deserved reputations.

Which takes us to today, and the karma that has come around to one of the doctors who did not behave well.

I mentioned last week the very arrogant oncologist who led my misdiagnosis odyssey.  His arrogance was apparent in so many ways. When one of the lab reports referenced an additional missing lab report, not only had he not realized it wasn’t present, but then (after I figured out, and alerted him that it was missing), he told me he was sure it would make no difference anyway. (It did.) When I insisted on a second opinion before starting chemo, he yelled at me – I had no time to waste! I needed to start chemo immediately! (I didn’t.)  When I asked if there wasn’t some other form of treatment that might be effective, he admonished me for second-guessing him – how dare I! That I needed to stop looking on the internet for cures! (OK – he might have been right about that one, but I sure as heck didn’t believe that at the time, and it’s a d*mn good thing I kept looking!)

Once it was proven that he was wrong (as in – I didn’t die !), rather than simply own up to his mistakes or apologize, he instead wrote a three-page letter to me explaining how he had taken all the right steps in my case. Excuses and more excuses. Never mind that (had I not sought a second opinion) I would have gone through chemo for no reason. Never mind that, once I survived chemo, I would have suffered side effects for the rest of my life. And certainly never mind that on the other side of chemo, this very arrogant and condescending doctor would have been considered a hero for curing me of an incurable form of lymphoma. A paper would have been written about it, and future patients who really did have SPTCL would have received the chemo I received – and they would have died because it wasn’t really the right protocol.

(And – don’t forget – he would have made a LOT of money from treating me with chemo I didn’t need.)

Just a few years later, karma came back to bite him in the backside. Continue Reading →


Of Heroes, Trust, Discord, Arrogance, and Karma – Part I

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This year I can tell I’m finally getting beyond the trauma. It’s a feeling of freedom to some extent, but sort of a shame to another. And you know me – I always end up analyzing these things (or, perhaps over-analyzing them) – enough so that I’m going to share some of that analysis with you.

The trauma I refer to was the cancer (lymphoma) misdiagnosis in 2004 that propelled me to change careers to patient empowerment, and eventually advocacy. By trauma, I mean that I was told I that in a few short months I would be dead, and that I butted heads with the very doctors who were supposed to help me manage my diagnosis, one a most-arrogant oncologist who, in God-like fashion, told me I was foolish to waste time getting a second opinion because “no one will know any more about your cancer than I do.”


On September 20, 2004 – 12 years ago last week – after three months of doing battle with the healthcare system, I learned from a hematopathologist at the NIH that I did not have lymphoma after all. There was no evidence of any cancer in my body. None. Zip. All these years later I have never had any treatment.

Clearly, no, I wasn’t dead in a few months. They were wrong.

Further, it cost me every penny of my savings to prove I did not have cancer, despite the fact that I had health insurance. (It was crappy, high-deductible health insurance, but I was single and self-employed, and it was all I could afford.)

Since then, every year on September 20th I have mentally celebrated what has become a rebirth of sorts. I have simply taken stock of all the positive life changes that resulted. I’ve tried to use that impetus to drive me past the PTSD that remained for so many years. It seems to work; I haven’t had a meltdown in more than two years, and life just keeps getting better and better.

I know I’m getting beyond the trauma because when Tuesday, the 20th rolled around this year, it was late afternoon before I even realized what day it was. In the past, I’ve dwelled on it for days before, and sometimes after… but this year, 2016, I barely thought about it at all. Hooray!

Of course, life lessons can always be gleaned from such an experience. So today, based on my misdiagnosis odyssey, I want to focus on behavior in the face of discord, and how it can have an enormous effect on one’s reputation and success as an advocate, just like it did for those doctors involved in my misdiagnosis. Further, over time, it can have an immense ripple effect, both good and bad – the part I call karma.

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The Starfish Story Curmudgeon

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Several weeks ago, a couple we know were married. It was a wonderfully happy event, celebrated by many. The wedding itself was elegant, and beautiful, and everyone had a delightful time at the reception. You know – the stuff fairy tales are made from.

The bride chose a starfish theme for the celebration, telling the starfish story alongside it. She has worked hard for decades as a nurse and the starfish story speaks to her – a perfect choice for her, really. Starfish were part of both her wedding shower and the reception decor. Just lovely.

What? You don’t know the starfish story?  Well, neither did I. So, in a nutshell:

A young boy is walking along the beach when he sees hundreds of starfish washed up on the shore. In dismay, and realizing that many of them are still alive, he begins chucking them back out to sea so they won’t die on the beach. A man comes along and asks him, “Why are you throwing those starfish back out into the sea? You can’t possibly save all these starfish! What difference can you make when there are so many to be saved?” After thinking about it for a moment, and throwing one more starfish back out into the water, the boy replies, “I just made a difference for that one!”

Of course, the starfish story got me thinking about advocates. Isn’t the “one person can make a difference” a huge theme in our work?  We can’t fix the entire healthcare system, but we can most certainly help one person at a time! 

It would seem like the parable of the starfish fits us like a glove; as if we should embrace it, appreciate it, and even share it with others to help them understand why we do the work we do… 

Until we realize that maybe – just maybe – it’s way too simplistic. Maybe we really need to take a closer look. In fact, maybe the starfish story represents how we should NOT be doing our work.

Say what?

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An Independent Care Professional’s Most Important Body Part

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I’m guessing you don’t think of your body parts as making important contributions to your advocacy career.

But they certainly do! In the past we’ve talked about the importance of your ears (listening). I could also focus on your brain (a – ahem – no brainer), or your fingers (which dial your phone or type your emails) or even your feet (which take you to meet your clients).

While those may be important, none are as important as the one we’re looking at today. Today we’re going to take a look at the one body part that will help you improve your clients’ outcomes, keep you on track with your practice; help you make your best decisions, and improve your chances of success as an advocate. Today we’re talking about your gut. (OK – I suppose this use of “gut” may not be classically thought of as a body part – but roll with me on this one, please!)

No, I’m not peddling probiotics, nor discussing the latest in stomach remedies. Nor am I looking at your decision to eat healthy – or not.

Instead we’ll focus on your gut as it applies to making decisions, helping you overcome hurdles, and finding the best answers – the ones that work best for you and your clients. As in, “Go with your gut!” or “Trust Your Gut!”

For me, learning to follow my gut has been an evolution. It wasn’t how I was raised. I was raised to make big or important decisions by reviewing pros and cons, sometimes in lists, perhaps on paper. Do the math, or figure out consequences – whatever was appropriate to the situation.

But sometimes, no matter how comprehensively I listed pros and cons, and no matter how accurately I interpreted those lists, my decisions did not work out well. Those errant decisions included my first marriage – which failed miserably –  and choosing a business partner who tried to put us into bankruptcy. On paper, with lists of pros and cons, and using the method I was taught to use, they looked good, but they were still bad decisions.

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Celebrate the FUN: Anticipation, Reconnecting, and Buying New Stuff

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Most of us spent at least 13 of the first 18+ years of our lives going back to school this time of year. Many of us went back to school in August or September even more years than that – through college, even grad school or medical school…  And for some of us, like me, who chose teaching as a career, there were that many more years…. (In fact, I went back to school for 27 of the first 33 years of my life.)

Then of course, our kids went back to school even when we didn’t… so add another 13 or more years to that…

So is it any wonder that when late August and September roll around, that we aren’t feeling like… hmmm…. isn’t there SOMETHING I’m supposed to be doing to get ready to go back? Only now the question is, “Go back to…. what?” 

It’s beyond nostalgic. It’s momentum. It seems to be almost a biological trigger that makes us yearn for the old days of “going back.”

However, I actually think the nostalgia born of momentum has almost nothing to do with going back to school itself. It’s more about three favorite things: 

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… and Now the New York Times

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Over the years I’ve been asked this so many times – when do I think health and patient advocacy as a well-known profession will “arrive?”  As if there should be some sort of date on which a switch is flipped and the world begins to recognize, then hire independent advocates to help them navigate the healthcare system.

Truth is, I’ve been expecting that tipping point for years. But (true confession) the evolution has been slower than I anticipated. Despite my 30+ years of business experience, working with every size business in every area of business imaginable, my crystal ball is still somewhat tarnished and my prediction abilities remain challenged.

The answer remains:  I just don’t know. It has been growing steadily. The opportunities are apparent every day!  But… yes, it has been slower than I thought it would be.

So many advocates, frustrated because the profession isn’t more mainstream, and because their phones don’t begin ringing off their hooks the moment they hang out their shingles, ask me “Why can’t the Alliance make it happen?  Just do a lot of big promotion!  Why aren’t you pushing advocacy in national press?  Or doing lots of google advertising? or?”

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