Archive for the 'Radio' Category

From the desk of…. (11/2/07)

Some miscellany from the week not requiring entire blog posts on their own…fromthedeskof.gif

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Enjoyed participating in the WSYR Radiothon with Joe Galuski to raise money for the University Hospital / Children’s Hospital in Syracuse, NY. Incredible resource for families with sick children.

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Two good interviews of note on this week’s radio show: Dr. Thomas Welch, chair of pediatrics of University Hospital, and Dr. Matthew Scuderi who will talk about cartilage repair for the knee. You can download the interviews from the radio show website.

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You might be interested in some recent comments made by Marc J, an anesthesiologist, who is NOT happy with some of my posts. In fact, he would like to serve me some “salsa for the chip on my shoulder.” Hmmm…. He also suggested in one of the comments that he didn’t like attacking me on my blog where all my readers could see them — however — as you know, my email address is listed directly under my photo.

I want you, my reader, to understand all sides of the story when it comes to your care. In fact, I think it makes for smarter healthcare consumers — and shows you even better why you need to take responsibility for your own choices in your care, ranging from who your doctors will be, to how you will be diagnosed or treated, to how you will pay for your care, and everything in between.

So here are a list of Marc’s posts, although, please keep in mind that he doesn’t really intend to attack me publicly (uh-huh.)

Comment on Lemon Law for Medical Consumers by Marc J

Comment on How Apologies Lead to Fixing by Marc J

Comment on When Dirty Doctors Can’t be Identified by Marc J

In fact, Marc, you are right. There are definitely times I cop an attitude or have an “edge” to my work. I’ve been accused of that before. It started with my own misdiagnosis, and it continues because I get dozens of emails each week from people who have been wronged by the healthcare system in some way. It’s heartbreaking — and has turned me into a cynic, whereas throughout my life to this point, I’ve mostly been a pollyanna.

Guess that makes me the Ralph Nader of the healthcare system.

And yes, I have real problems sleeping at night. Because I just can’t get the word out fast enough.

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OK — out to do some gardening today! It’s a perfectly glorious autumn day here and I plan to take advantage of it. Included will be cleaning up the pieces of pumpkins left from the squirrels who have eaten right through them!

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From the Desk of (10/27/07)…

fromthedeskof.gif

Some miscellany from the week, not requiring entire blog posts of their own….

The fires in Southern California have kept many of us riveted to TV and internet news. As reported earlier this week, my daughter, Becca, lives in Carlsbad, just north and east of several of the fires we’ve followed. I’m relieved and happy to report that she and her sigO Ed were never told to evacuate, and it looks like their home will remain standing, as will their neighbors’. Now they must deal with fallout from the smoky air and the ash that has coated anything and everything.

Thanks to those of you who kept them in your prayers.

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My radio show this week features two interviews you might be interested in. Dr. Helen Barkan will discuss migraine headaches, and Dr. Amy Friedman will tell us about kidney and pancreas transplants. My patient tip of the week is “Follow the Money.” If you can’t wait for Sunday, listen to the show from your computer. Same show – no commercials :-)

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Have enjoyed my week here in Sarasota, Florida with my patient empowerment students. Our sessions went quite well and as always happens, I learned from my students as well as vice-versa. Thanks to them for that!

I’ve been asked to return to teach again in early in 2008. Let me know if you’re in Sarasota and you’d like dates.

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Another great article for CNN’s Empowered Patient this week. Don’t Be a Victim of Pharmacy Errors. Some great tips — including some I’d not thought about before. Take a look. Stay Safe!

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For those of you who have followed my column series about Glen and his brain tumor, you’ll want to catch the last in the series this Tuesday. You might be surprised at the outcome — but then again — you might not.

While the series was intended to provide a process for keeping emotions out of medical decision-making, it seems to have stirred a hunger knowledge about Glen’s treatment progress, too.

Stay tuned! And if you want to be among the first to see the last chapter, then sign up for email notification.

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Tune in again next week for “From the desk of….” !

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How Apologies Lead to Fixing

I’ve talked before about blamers and fixers. Here’s a way of looking at that concept that may make you a wiser patient.

One of the big questions about medical mistakes is whether practitioners should own up to them. Until recently, doctors were highly discouraged from admitting any kinds of problems had taken place, whether it was prescribing the wrong medications or amputating the wrong limb. The thought was that by admitting guilt, they would be setting themselves up for losing lawsuits.

Once again — the concept of blame creates problems. The fix is what might seem surprising.

Studies have shown that in fact, when doctors are willing to accept responsibility enough to apologize, and review and learn from their mistakes, malpractice lawsuits are far less likely to be filed. In fact, a study undertaken at the University of Michigan Hospital where they have a policy of disclosure for both errors and near-misses, reflected a two-thirds reduction in medical malpractice claims, according to All Things Considered on NPR.

Clearly — taking responsibility can even save money!

What no one I know about has yet examined is this: why does that happen? Why can something as simple as a doctor’s apology keep a patient from filing a lawsuit?

Here’s my guess at the reason:

When young children misbehave, they are blamed for the problem they caused, then taught by their parents to apologize. The apologizing itself is deemed a way to begin the “getting beyond” whatever their indiscretion was, both for the misbehaver and for whomever the victim was. Also, as children, when someone hurts us or does something we know was wrong against us, we are taught to learn to accept an apology as the first step toward forgiveness. That’s how we learn the beginnings of closure, and we learn to depend on closure as the way to get over whatever happened.

Later, when something bad happens to us that we have no control over, we human beings want to blame. It gives us something to focus on. We blame the terrorists for 9/11. We blame the government for Katrina problems. We blame faulty design for the Challenger blowing up. Sometimes we even blame God, or whomever we revere, when something horrible happens that we can’t point any other finger at.

Often, that finger-pointing blame is appropriate. Who or whatever we blame deserves it, and what we want is for the object of our blame to then feel appropriately guilty — and therefore to apologize. The acceptance of that guilt is what lets us begin the closure process. Any healing that may take place will be based on that closure.

The Institute of Medicine tells us up to 98,000 Americans are killed by medical errors or misdiagnosis each year — which means 98,000 doctors deserve the blame. When those 98,000 doctors were told they were not allowed to apologize, then families of the victims had no way to begin their closure process by accepting an apology and starting to forgive. They needed to find closure in some other way. So they filed lawsuits.

That the number of malpractice lawsuits were reduced to one-third of previous levels because doctors are allowed to apologize, should therefore come as no surprise. In fact, in the NPR story used to illustrate the point, not only did the victim of the medical error feel relieved that she had been apologized to, but she further stated that she felt as if they had listened to her, and had learned from the mistake made on her, so that another woman wouldn’t suffer later from the same mistake.  She no longer felt like a victim.  In fact she felt like she had inspired something very positive.

The NPR story said that up to 70 percent of hospitals are now leaning in the direction of disclosure and apologies. That’s excellent. I hope to hear soon that 100% of hospitals are buying in.

And what can patients do in the meantime?

In my opinion, we can measure how patient-centered a hospital is by examining its policy about error disclosure. If they support disclosure, and allow their doctors to apologize and learn from errors, then they are far more likely to be interested in outcomes for patients than those hospitals that don’t support this sort of transparency.

So, taking this idea another step: as patients, if we think we may need to be hospitalized in the near future, we can actually use this information to our advantage. Call the hospital and ask what their policy is. Ask a doctor who has an affiliation at that hospital what their policy is.

Are they forthcoming and pro-learning? Or are they offended that you asked the question so they dance around the answer?

See what they respond, and how they respond. Tune in to their attitude. It can tell you a lot. And that might make a huge difference in your hospital experience.

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Learn more about doctor’s apologies here.

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Of Chicken Little and Life Insurance

I heard a conversation on the radio this morning, with commentary to share with you.

Joe Galuski, the morning host on WSYR Radio (Clear Channel) in Syracuse, NY engaged the weather guru, Pat Pagano, in a conversation about long term climate changes, global warming and those issues that surround them.  Pat kind of poo pooed the report Joe was discussing, and Joe said, “Wait a minute.  We just watched a bridge collapse in Minneapolis because nobody listened to the warnings!”

Welcome to my world, Joe and Pat! 

When I explain to people about the work I do.  When I tell them I try to warn patients about the problems of our dysfunctional healthcare system, then provide them with tools they need to get the best healthcare they can from the system, people always tell me how important that is…. yet….

They don’t seem to realize the message is for them until they have a frightening brush with the system themselves — or — someone they love does. 

It’s a little like selling life insurance.  No one ever thinks they are going to die, so they don’t think they need life insurance.  No one ever thinks THEIR doctor will make a mistake, or THEY will be given the wrong prescription in the wrong dose, or THEIR hospital will infect them or THEY will have trouble getting a diagnosis — until it happens to them or their loved ones.

Yes — sometimes I feel a bit like Chicken Little.  Or, as I explained to a gentleman I spoke to yesterday, I have had to develop a cynicism that is way outside my comfort level.  I’ve never been a cynical person in my life — until adopting my patient advocacy mission.  But if my cynical, chicken-little-like warnings help just one patient, it will have been worth it.

Next time you hear a warning, you don’t have to believe it right away.  But don’t dismiss it so quickly either.  Joe had a point about that bridge in Minneapolis.  And I have a point about American healthcare and its evolution into dysfunction. 

Warnings are only meant to protect you.  Chicken Little was right, afterall.

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Ultimate Patientude: Your Final Wishes

As I tooled down the highway on my way home last evening, I heard a commercial on my radio that needs to be shared with you.

I was particularly interested because as important as the message was, I really had to wonder just who was paying for the commercial time!  Because the message was not one that could sell a product or service. 

It was a commercial, a public awareness announcement, about advanced directives.

Yesterday I introduced the term “patientude” — development of the attitude and skills we need to get the healthcare we deserve.  The development of advanced directives, it seems to me, is an ultimate form of patientude.

The commercial directed me to a website:  www.PutItInWriting.com  The sponsor of this website, and the commercial, is the American Hospital Association.  They call it “Your Life on Your Terms.”

There is a ton of excellent information there, from the American Bar Association, to the National Palliative Care Association — it’s an invitation to see and read what you need to know about making sure your loved ones understand your wishes, and making sure your loved ones aren’t forced to make difficult decisions on your behalf during the heartbreak of losing you.

Do yourself and your loved ones a favor and check it out.  www.PutItInWriting.com  Your loved ones will thank you for your ultimate PATIENTUDE.

And I thank the American Hospital Association and the other sponsors for sharing the information.

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Soldiers’ War Injuries = Pre-existing?

This story from NPR caught my eye this morning.  Even those who think I go a bit off the deep end when it comes to casting dispersions on insurance and other payor programs that should be paying for our healthcare and don’t… this will make you think twice.

The story concerns American soldiers who have fought in Iraq and have been injured, in this case, by bombs or rockets.  They return to the States with long term effects from those injuries ranging from headaches to bleeding ears to insomnia, symptoms which never existed before they left and clearly result from their war injuries.  Heck, some of them have been awarded purple hearts for those injuries.

If I understand the story correctly, if the soldiers are diagnosed with post-traumatic stress (PTSD) then the VA will continue to care for them.  This is important because most of them don’t stay in the service past their original enlistment, so the PTSD diagnosis establishes that they have suffered from the effects of war.  That ensures their care once they leave the service for the injuries suffered during service to our country.

That’s fair.  And that’s the point being made by the injured veterans who testified before the US Congress yesterday.  But, according to Paul Towns, who runs an organization called Veterans for Common Sense, there may be tens of thousands of soldiers who aren’t receiving that fair care they deserve.

Unfortunately, those tens of thousands are being denied care because, instead of being diagnosed with PTSD, the VA “discovers” that they had a “pre-existing personality disorder” after they return.  Never mind that these soldiers passed all their physical and mental tests and exams before they entered the service.  Never mind that they didn’t get blinding headaches, bleeding ears or suffer from insomnia before they went to Iraq. 

Are you kidding me?

This seems like a travesty to me.  That these soldiers fought on our behalf, to help America retain its freedom…  and we would deny these men and women who stood on the front lines the healthcare they deserve?

And this is the government doing the denying – not a private health insurance company.  That means it is our tax dollars that would need to be spent to take care of these soldiers.  I, for one, think that it is a small price to pay to take care of these soldiers who have put their lives on the line to protect me.

Even aside from dishonoring these men and women in this way — for the government to be so underhanded, for the government to strip the possibility of care from these soldiers, establishes a precedent for other payor entities to do the same.  Afterall, if a private insuror did the same thing and was sued, all their lawyers would have to do is point out that the US government denied care first!

It’s wrong.  I’ll be interested to see what the outcomes of the congressional hearings are.  If you have the opportunity to contact your congressional representatives, please do:

Contact information for US Congress Members

Covering the healthcare costs for injured American soldiers is only fair.

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Microchipping for Better Human Health?

The AP issued an article this week (picked up in many pubs, I’m sure — here’s a link) about injecting microchips into humans, in part to improve their healthcare.

The idea is that there are a number of problems we human beings could solve if we just had a microchip implanted in our arms.  For example it could identify us if we needed to enter a nuclear power plant, or it could replace a credit card so we could make purchases, just by walking by a cash register that could read the chip in our arms.  Healthcare-related applications include:  it could figure out who we are if we have Alzheimers or another dementia and can’t find our way home.  Or if we have a life-threatening illness and passed out or could not talk, it would identify the condition we had, such as diabetes or heart problems.  Or it might contain all our health insurance information, or even the list of drugs and doses we take in case someone needed to help us with those things.

The chips are called RFID:  Radio Frequency Identification.  They are the size of a large splinter, and they get injected under your skin. Whatever information is included in the chip can be read by RFID scanners. 

These RFIDs are already used in a variety of non-human applications.  For example, you can get your pet implanted with one and if your pet gets lost, the vet has the scanner that can tell who your pet belongs to.  Or if you keep cattle… well…. I don’t think a major portion of my readers are cattle farmers.  Some maybe, but not too many.

Anyway — call me old fashioned — but let me humbly share my opinion on these human applications for RFIDs.

NO WAY !!  NO FRIGGIN’ WAY !!

Just in case there is anyone who questions how I think about them — I think they are a lousy idea for humans.  There are way too many ways such an identifier could be misused, and almost nothing positive it can do that can’t be handled in some other way.

If I ever want to visit a nuclear power plant, I’ll figure out another way.  If I get Alzheimer’s and my family is worried I will wander away, or if I develop diabetes or heart problems, then I”ll just wear one of those medical ID bracelets.  And if I need to make a credit card purchase, I’ll happily pull the card from my wallet.

Nope.  This slope is just way too slippery.  Don’t even think about it…. well….. unless you want to get your dog back.

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Medical Research: Is Objectivity Optional?

Julia Schopick, patient advocate and tell-it-like-it-is author, exposes a lack of objectivity in her three part series about research that gets published without disclosure

We patients are bombarded with news and information every day about health and medical research results.  The points Julia makes can affect the care we receive, so it’s important for us patients to know when to question the information we are presented with. 

Julia’s first exposé is of VNRs (Video News Releases) that are showcased by TV and radio stations all over the country as if they are news when, in fact, that are the product of a medical organization’s PR department.  I’ve blogged about them before.  They do raise that question:  is the information we patients receive ‘real’ information?  Or is it simply marketing?  There is a huge difference!! 

Hmmm… perhaps VNRs should have their names changed to VPPs:  Video Promotion Packages.

Truth is — I can see the various “sides” in all this.  I worked in marketing for 20+ years — so I can see how VNRs are a good marketing tool.  From the marketing department’s point-of-view, as long as you can find media outlets willing to use them, well why not?  From the point of view of the media outlet, they are easy content.  No cost, and no effort.  Good fillers.  Cheap and easy will always win out. 

Where does that leave us patients?  What it tells us is this:  don’t believe everything you read, see or hear.  Always look behind the headlines.

Julia’s second example of non-disclosure takes on the venerable Journal of the American Medical Association (JAMA), perhaps the most respected medical journal in the world.  She points to the Wall Street Journal articles written by David Armstrong in 2006.  It exposed that the authors of JAMA published research results, had in fact been subsidized by the pharmaceutical companies that benefited by the research.  Questions about objectivity arose, as they should. 

If the scientists were paid to do the research with expected outcomes, can their research be considered objective?  And if it’s not objective, can we patients and our doctors trust their results?  If researchers are bucking the system and not disclosing conflicts of interest, then how can we believe any of their results?

The problem here is not whether the research should take place, however.  It’s a problem of disclosure.  It’s the problem of lying on behalf of those involved in the research.  Supposedly JAMA expects disclosure — but the doctor-researchers ignored the requirement.  Why would they want to raise eyebrows?

It takes no rocket or medical science to know that biting the hand that feeds you causes you to go hungry. But again, I see the various “sides” in this.  Research is expensive, and so is testing it.  Somebody’s got to pay for it, and with no stake in its outcome, why would someone else pay for it?  And, as patients and consumers, we demand new and better treatments for our medical problems, so we want the research to take place so we have more options, right?  Besides, all those researchers have mortgages, too.

A different kind of scientific testing, but an example I can share from my own experience that points out problems in disclosure…  I believe my own misdiagnosis was partially a result of a similar situation.  The lump removed from my torso was tested in one pathology lab with inconclusive results.  My medical record says “suspicious for” with a notation that the biopsy was being forwarded to a second lab.  The second lab’s record says “most consistent with” — and from there the oncologist ran with the ball, trying to convince me I had cancer. 

However — after I figured out I’d been misdiagnosed, I went back to the directors of both those labs.  What I learned is that any specimin sent to a second lab MUST contain the findings of the first lab. “This is what we think it is.  What do you think it is?”  That means in my case that lab #2 already knew what results had been found by lab #1 — so how could they look at it objectively ?  They couldn’t.  No objectivity there.  Just one lab confirming another.  Nothing scientific, for sure. 

Who wrote that rule?  The rule that says a lab must disclose its findings even though what they want is an objective second opinion?  Some lazy pathologists who don’t want to work so hard to arrive at answers themselves?  Behold Trisha Torrey — the victim of non-objectivity.  Yes, I have a few opinions about that.

As sharp patients, it’s up to us to ask questions all the time.  Always look behind the information to determine objectivity.  Make sure the information is not being twisted or shaped by someone who is either too lazy or can somehow derive income by you thinking one thing when, in fact, your health would be better supported by something else.

If it walks like a duck and quacks like a duck, don’t let anyone tell you its a goose.  It’s likely they’ve been subsidized by geese and won’t have disclosed one word about geese at all.

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Depression, Relief and NO DRUGS

After my long absence (moving is SUCH a pain!) I was back in the radio taping saddle this morning.  I interviewed Dr. Richard O’Neill about a report issued earlier this month touting psychotherapy (counseling) as the therapy that helped keep 74 percent of those women studied relieved from their depression.  The report was found in the American Journal of Psychiatry.  If you prefer reading the report in plain English, understandable to us mere patients, try this version from PsychCentral.com

I don’t usually report on mental health issues.  My hands and heart stay full with ideas and commentary about physical health — but in this case, I’ll make an exception, because the role of pharmaceutical drugs is so huge in this report and as we all know, those drugs are intended to alter the physiology of the body.

Here are the basics of the report:  74% of women who were depressed and chose psychotherapy only (NO DRUGS) for treatment, then continued on a monthly basis with their counseling (STILL NO DRUGS) kept their depression in remission.  It seems that continuing to discuss their problems with their therapists on a monthly basis kept their depression at bay.

Women who were diagnosed with depression and were treated with antidepressants AND therapy did not have the same result.  They continued to need the drugs.

Some thoughts to share:

In our quick fix society, it’s too easy to prescribe a drug that sends someone who may not really need it into a la-la land, where they won’t care.  This study seems to say that prescribing the drug to begin with may also doom that person to needing the drugs for the rest of her life.

More and more studies are showing the mind-body connection;  that is, that activities such as talking or exercising can affect brain chemistry and raise seratonin levels which elevates the mood.  Yet, doctors continue to grab the prescription pad for their patients to supply the quick fix when their patients are depressed or anxious.

Why is it that doctors are not more insistent on providing their patients with different advice — such as referring them for therapy instead of writing a prescription?  Three reasons I can think of:  First, because they don’t have the training to recognize when a patient needs counseling instead of drugs.  Second, because they can’t or won’t take the time to figure out the right avenue for their patients.  And third — because insurance will cover the drug whereas it may not cover the therapy.

Sharp patients know that mind-altering drugs, no matter whether they are prescription or illegal or grown in the backyard, can only lead to more problems down the road when they aren’t absolutely necessary for maintaining their mental health.  Sharp patients will ask their doctors about therapy when they need their mental status improved and will avoid mind-altering and mood elevating drugs whenever possible.

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Cancer Misdiagnosis: If I had a nickel….

… for every email I’ve received from friends, web visitors, blog readers, radio listeners regarding the man in England named John who was misdiagnosed with cancer, spent all his money, then found out he had no cancer afterall…

Yes — the misdiagnosis story is my story, too, minus two major points:  I didn’t spend all my money, and I didn’t sue the hospital.

Google provides links to (as of this blog post) 186 publications that carried the news.  I watched the report myself on both Good Morning America and the Today Show.  The short version is that John was diagnosed with an aggressive cancer, told he had only six months to live, and found out after several months that he had no cancer at all.  Because he had spent all his money, and run up his credit cards past their limits, he is now suing the hospital that provided the wrong diagnosis.

My questions:  which part of the story is so fascinating? the misdiagnosis?  the spent money?  the lawsuit?  And what will be the takeaway by readers and viewers?  Here are my thoughts:

When interviewed, John was asked whether he was angry, and he replied that yes, he was.  In my own experience, I was SO angry — so VERY angry — and I know that was difficult for many to understand.  Being told you will die within months turns your life around 180 degrees.  The torment and turmoil is devastating.  Then, later being told that “oops!” they made a mistake — and you will be fine afterall…. at the point where you should be elated, and your reality must turn back around 180 degrees again… you just can’t let go of the fury!  Until….  as that new reality begins to sink in….

Revenge comes next, and that’s where John’s lawsuit has him.  I read recently that the revenge center of the brain is among the most “pleasurable” — that when that part of the brain is stimulated, it is almost as satisfying as the taste of chocolate or the elation of new love, or the acme of good sex.  I don’t know if that’s true!  But I can tell you that ever since I decided to turn my “revenge” into helping other patients, it has been beyond satisfying.  Every day I get to wake up, do my writing or interviewing or presenting, and know I’m having a very positive influence on someone else’s life.  Honestly — that kind of revenge is TRULY sweet. 

And yes, for the handful of pathologists and oncologists who had a role in my misdiagnosis — I hope when they see my face in the newspaper, or hear my voice on the radio, or see notices about my presentations, they suffer a jolt of guilt when they do.  Fine by me.  It keeps them on their toes and may prevent the next misdiagnosis from happening.

Beyond the revenge — and perhaps the place John has not yet found himself — is the point when you realize that such a horrible experience has truly become the biggest blessing of your life…. yes….

My cancer misdiagnosis was the biggest blessing of my life.

The reasons are many.  I am a changed person in many ways.  My death-is-imminent diagnosis made me pause, and that gave me the opportunity to reassess and realign my priorities, focus on how to make sure my loved ones know how much I love them, learn to smell the roses, take time for ME, and gave me the strength to take some risks I had not previously been able to take.

The proof?  I talk to my father and my daughters, all of whom live out of town, several times each week. I sold my marketing business, changed careers, established DiagKNOWsis.org and EveryPatientsAdvocate.com to help others advocate for themselves, too.  I learned to shut down the computer to take some Trisha Time evenings and weekends. And after 18 years of being single after divorce, I let myself fall in love — and even get married!  Now THAT’s a risk, right? !!

Many people have asked me why I didn’t sue, by the way.  I did talk to a lawyer and was told that in New York State where I live, in order to prevail in a lawsuit, one must show physical harm.  Since I refused chemo, I was never physically harmed.  Evidently emotional and mental anguish don’t count, at least in New York State.  Regardless, even if there was a possibility of succeeding with a lawsuit, I never would have followed through.  I think some lawsuits have their places, but not this one.  If I had ever suffered through chemo?… hmm…..

More importantly though — the takeaways I would wish for John and YOU? 

For John, I hope he can get beyond his revenge.  Either that, or I hope he can turn his revenge into a way to help others because it is SO very positive and SO very sweet.

For John, too, I hope he can realize that every does happen for a reason.  He needs to figure out what the reason was for his circumstance — and then he needs to figure out how to make the best of that reason.

And for you, my readers?  Sharp patients know to GET A SECOND OPINION — and to pull out all the stops to learn everything they can about difficult and deadly diagnoses!  Had John done so, he would have figured out, like I did, that his test results were misread, and he didn’t really have cancer.

… and I would have had to think of something else to blog about today. :-)

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