Celebrities with Crohn’s Disease – There’s only 10 ?????

Posted on November 29, 2011 | 3 Comments

What is Crohn’s Disease?

Living with a painful, incurable and auto-immune chronic illness like Crohn’s Disease or Inflammatory Bowel Disease (“IBD”), is like giving your apartment keys to the most annoying, irritating and distasteful people you have ever come across in life knowing they may stop in and come live with you at ANY MOMENT, without ANY NOTICE and stay for as long as they want.  And like the painful cramps, unpredictable hospitalizations, countless surgeries and medications with lethal legal disclaimers so long and comprehensive they make merely crossing the street seem like modern day warfare, these folks can now stop by your apartment at any time to disrupt your life with no end in sight to the devastation and uncomfortable feelings they cause.

Celebrities & Crohn’s Disease

I would feel so much better about my personal plight if I knew that George Clooney “felt my pain” and despite Crohn’s Disease was still able to appear to be such a dashing and charming gentleman.  So, I did a few searches on the Web to find out which Celebrities have been brave enough to face the untrue and unfair “Bathroom Stigmas” associated with Crohn’s Disease to go on and offer some hope to their fans or just to ordinary people who don’t want to feel so alone in their seemingly private battles with such a devastating illness.  Since we live in a society where Fame and Pop Culture are so influential that they affect public perception of a disease and thus the amount of money raised to finding treatments and even a cure, I thought it would be interesting to see if there is a list of such “hip” IBD folks.  Hey, if Clooney has Crohn’s, then I’m sure even Colitis will soon be cool to add to the lexicon of hipsters.  After all, there are many courageous celebrity cancer patients such as Lance Armstrong (i.e. testicular cancer) and Farrah Fawcett (i.e., anal cancer) who have used their fame to shine a light on other very sensitive diseases where none had shone before.  Thankfully, many other celebrities have since followed suit offering their support and persona to a wide array of causes such as Diabetes, Rheumatoid Arthritis and several other similar serious chronic illnesses.

George Clooney does NOT have Crohn’s Disease

As far as I could tell from my research, George Clooney DOES NOT HAVE CROHN’S DISEASE.  I’m glad for him but secretly I must admit I would have had a lot of fun working on fund-raising events with him as I know he’s the type of “Stand-Up Guy” who would do all he could to help.  But keep in mind that a person’s fame and its value, duration or related employ-ability, unfortunately, can be adversely affected by fear, for example, of the public’s perception that a sexy leading lady might have Crohn’s Disease and thus need to use the bathroom in the middle of seducing the Actor playing James Bond!  By analogy, think of what happened to actress Anne Heche’s career as a beautiful seductress after she told the world she was a lesbian?  Alright, that is not the best example because she also said she was at times two different people and I believe she told talk show Host Larry King that she, or her other half, also communicated with Martians, but you get my point.

I’ve worked in the entertainment industry as an attorney and business affairs executive so I know that many people understandably suffer silently with image-debilitating illnesses such as Crohn’s Disease due to fear of reprisals from decision-makers or sponsors who would cut their professional ties and financial support if they knew that these celebrities were mere mortals and thus subject to all the medical problems which befall the rest of society.  You’d think that some sponsors would cleverly capitalize on this humanity “relate-ability” factor but “Sex Sells” and most times nothing short of perfection is demanded for marketing campaigns.  For example, picture a TV commercial in which Clooney and Brad Pitt share a private moment over some Blue Label Johnnie Walker Scotch Whisky in which Pitt turns to the camera and says, “Don’t let Crohn’s Disease stop you from enjoying life.  It may take me longer to drink due to bathroom runs and I do get a little more gas in the morning, but Johnnie Walker Blue is what I drink when I like to chill.”  Wow, would that would raise awareness of Crohn’s, but it would also affect the types of Scripts Brad Pitt receives after that particular Public Service Announcement for Crohn’s Disease goes public.  (Note:  I used Clooney and Pitt SOLELY as a JOKE and I have NO IDEA if either has Crohn’s Disease.)

Celebrities and “Underground Crohnies”

Please understand that I am not at all judging some celebrities for simply keeping their private lives “private” because I understand why, if need be, they must be “Underground Crohnies.” I just wish life were different and that fame and decision-makers were more understanding of human frailties.   In any event, below is the list of the most prominent celebrities my November 29, 2011, Google Search revealed who have gone public with their Crohn’s Disease.

It is a very funny and disease-revealing list because there has to be more than TEN (10) celebrities IN THE WORLD with Crohn’s Disease (and in some cases I even had to stretch the label of “celebrity” a bit just to come up with 10).  Regardless of the number, I thank them and only hope they serve as role-models for other people and celebrities in highly visible positions to bring attention to Crohn’s Disease (and other challenging chronic illnesses) so that the general public doesn’t just see it as an embarrassing illness that must be hidden like some lethal bathroom plague.

Celebrities with Crohn’s Disease

Cynthia McFadden – ABC News correspondent and “Nightline” Anchor.

Frank Fritz – One of the stars of the History Channel’s reality series American Pickers, is an antiques treasure hunter who has battled Crohn’s Disease for more than a quarter century.

Mike McCready – The lead guitarist for the band, Pearl Jam.

David Garrard – Former starting quarterback for the NFL’s Jacksonville Jaguars.

Mary Ann Mobley – The Brandon, Mississippi beauty who was crowned Miss America in 1959.

Shannen Doherty – Former star of the TV show, Beverly Hills, 90210, told Star magazine in 1999 that she had been diagnosed with Crohn’s disease.

Dwight D. Eisenhower - The 34th President of the United States was diagnosed with Crohn’s disease in 1956 and required surgery for the condition just six months before his reelection bid.

George “The Animal” Steele – His given name is William James (Jim) Myers, but professional wrestling fans know him as George “The Animal” Steele. His career in the wrestling ring spanned more than two decades, culminating in his induction into the World Wrestling Entertainment Hall of Fame in 1995.

Thomas Menino – Mayor of Boston, Massachusetts.  The longest-serving Mayor in the history of the city.

Kevin Dineen – 19-year National Hockey League (“NHL”) veteran career who is now coach of the Florida Panthers.

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Posted in Bathroom Stigmas & Crohn's Disease, celebrities, Celebrities with Crohn's Disease, celebrity, chrones, chrones disease, Colitis, Crohn's Disease, IBD

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Doctors Quashing Patient Freedom of Speech

Posted on November 20, 2011 | 2 Comments

I was enjoying my Sunday morning attending to my Social Media responsibilities just minutes before I planted myself on the couch to watch nine (9) hours of NFL Football when I came across an article entitled, “Doctors can compel you to remove negative reviews from Angie’s List” by Ed Oswald.  Mind you, this article is only about SOME DOCTORS and primarily focuses on the company drafting these agreements for your Doctor which ask you to sign a contract giving up your Freedom of Speech so whatever you write about him or her online is owned by your Doctor. Accordingly, if your Doctor is unhappy with a negative review or for whatever reason wants to take down your opinion, he or she can do so. That company is Medical Justice.

I am not an advocate of Physician-rating websites because it has been my experience that the Doctor-Patient interaction contains so many subjective variables that quantifying a rating for the experience is more likely than not to be misleading.  However, there are some companies who are trying to nevertheless help us Patient-Consumers by devising such Ratings Systems.  I maintain that this type of Ratings System is akin to developing a scale for physical (and superficial) “Good-Looking-ness” BUT I do appreciate the efforts of these companies since they are trying to help.  Some of the more reputable of such Ratings companies are listed in the Ed Oswald article above and they include RateMDs.com, Angie’s List and HealthGrades.

But what this company Medical Justice and these complicit doctors are doing is APPALLING!!!  To think that the Repairman who comes to your house to fix your Dishwasher has higher ethical standards that your Doctor, is disgusting. Think about it:  Would ANY Repairman ask a Consumer to sign a contract giving away the right of the much cherished Freedom of Speech not to comment on the Repairman’s services on the Web?  Of course not!  In fact, a Repairman would want to do such a good job that after he is done you are motivated to actually go on-line and comment about his work so he can get new customers.  What are doctors afraid are of and what gives them the moral high ground to take away another citizen’s Freedom of Speech?

Moreover, young men and women of the United States Armed Forces are putting their lives on the line EVERY DAY for US citizens to have this right.  What can possibly trump that incredibly honorable and selfless act? The ONLY exception that makes sense to me is if some lunatic patient libels or slanders them or if a patient falsely accuses them of physically attacking or touching another patient.  Such actions can irreparably damage a professional reputation and must be immediately addressed. However, there are different forums of legal recourse for those despicable crimes.  But to resort to silencing a patient’s Freedom of Speech in order for him or her to get medical treatment is despicable and should be reason enough for said patient to RUN and choose a different physician.  The arrogance of some doctors is astounding.

I’ve always felt that rating medical professionals on the web would be a slippery slope.  Based on the foregoing, it would seem I was correct but I never imagined some doctors would go so far as to trample on a patient’s Freedom of Speech.  As a consumer, would you accept such stifling agreements from other Service Providers?  I think not.

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Posted in Doctor Ratings, On-line Doctor Ratings, Patient Consumers, Patient Freedom of Speech, Physician Ratings

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Nurses – The Most Consistently Competent & Kind Medical Professionals

Posted on November 16, 2011 | Leave a comment

In my 27 year “Career” as a Professional Patient, due to an incurable and autoimmune illness (namely, Crohn’s Disease), I have been hospitalized over 200 times, in several different states, at numerous hospitals, under different healthcare systems & health insurance protocols, to treat a variety of maladies and endure 20+ surgeries.  During this Career, I have had the privilege to interact with literally hundreds of Nurses and with one (1) exception, involving the involuntary insertion of a Foley Catheter into my Penis, I state without equivocation that their compassionate, meticulous, consistent and professional demeanor are the reasons why I have not lost my mind and only inches of my small bowel as a result of Crohn’s Disease!

(If you want to learn all of the details regarding “The Good Nurses, The Dedicated and The Foley Catheter,” you must purchase my “critically acclaimed” [pretty cool] and funny book/memoir, entitled, “Confessions of a Professional Hospital Patient.”  In all seriousness, the book is available for purchase at Amazon and Barnes & Noble and patients/caretakers with all sorts of medical issues from all over the world have been kind enough to not only purchase it but many have taken the time to write to me about how much it has helped them. Nothing brings me more joy. )

My “professional” career technically began in 1984 (i.e., after I was formally diagnosed with Crohn’s Disease) although, in retrospect, many medical problems and hospitalizations which occurred during my childhood should also count toward any World Record of unwanted attention and adversity since they all seem to now make sense in light of the broken genes I inherited from my loving parents.  (I mention this in case someone from Guinness World Records is reading my Blog.)  And for those of you who can’t relate to the numerical significance of 200+ hospitalizations or how many painful Intravenous “sticks” that amounts to, please try and appreciate this:  The 1984 United States Presidential Election was between incumbent Republican President Ronald Reagan and the Democratic candidate Walter Mondale.  As you know, President Reagan prevailed and I think it is fair to say that between 1984 and the present, the world has probably experienced more “change,” both good and bad, than ever before.   More specifically, the iPod, 1986 New York Mets and the Internet being classified amongst the good; and all War, “Keeping Up with the Kardashians,” and the Bruce Willis movie, “Hudson Hawk,” listed amongst the bad.  The ONLY CONSTANT for me was, and is, the reliable and kind Patient Care I received from Nurses.

Whether it was 1984 or is November, 2011, when I am admitted to a hospital and get approached by a Nurse I know exactly what is going to happen.  I take great comfort with that proven expectation in my mind.  I’ve also come to learn so much about Nurses and the more I learn about the demands of their profession, the more I am impressed with the dedication of each individual who makes that choice to help others in their time of most critical need when they often are not anywhere near their nicest in terms of physical condition, state of mind or chosen vocabulary, for example, when they are in pain.  Nurses absorb and segregate the unnecessary patient “noise” to help the other medical professionals do their jobs.  They also do it with a smile and with the only sense of professionalism which ALWAYS takes into consideration a patient’s “continuity of care.”

Please don’t interpret my praise of Nurses as some implicit dig at other medical professionals.  It is just that as a group and a profession, no other medical professionals are under such incredible hour-to-hour, minute-to-minute pressure to perform and handle it with such consistent success and kindness towards patients.  That would seem impossible to achieve had I not witnessed it first-hand over the past 27 years.  My recent November, 2011 hospitalization of 10 days reminded me of this and I wanted to formally note my appreciation to Nurses all over the world.  Thank you.

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Posted in "Confessions of a Professional Hospital Patient", Crohn's Disease, Nurse, Nurses, Nursing, Professional Patient, Professional Patient Book

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Penn State University Tragedy is NOT about Football

Posted on November 11, 2011 | Leave a comment

It is about Child Abuse/Molestation and how to Prevent/Stop it in ANY environment despite ANY perceived stature or professional consequences.  More importantly, it sadly represents the premature “End of the Innocence” for at least Ten (10) +   8-12 year old victims. A Tragedy in every sense of the word.

While I have never been abused or molested and thus can’t possibly presume the accompanying anguish, I do suffer from a persistent and pervasive incurable and painful chronic illness (i.e., Crohn’s Disease) which often makes my life seem unbearable.  In fact, I am writing this from a hospital bed in a New York City Hospital where I have been for the past 8 days and 100 times before!  But I do know people who have been abused as children and they have scars which are ALWAYS fresh and it takes courage, understanding and compassionate relationships and professional help for them to go on to lead a happy life and/or to simply survive.  For many, however, that’s not enough.

That said, I watched and listened to all I could about the Penn State University situation and I was appalled at the public’s & media’s fascination with the one man who most likely could have exposed the situation in 2002 as opposed to the predator who hid behind the money-making brand of Penn State University Football to scout and molest 8-12 year old victims from approximately the early 1990s through 2009/2010.

I am not a parent nor do I have any children but when I read the 23-page Grand Jury Indictment vs. Gerald A. Sandusky (the “Alleged Monster”) [see http://www.freep.com/assets/freep/pdf/C4181508116.PDF] I experienced an extraordinary array of emotions including rage, anger and sadness.

I also was disgusted by the actions of the following adults who, despite apparently complying with the Pennsylvania “Reporting Laws” regarding such matters, could have nevertheless EASILY prevented additional victims past early, 2002.

More specifically: The Alleged Monster for treating the Penn State University Football Program and his Charity Organization, The Second Mile, as breeding grounds for potential child molestation victims; Mike McQueary who in 2002, as a 28-year old graduate assistant, witnessed the Alleged Monster anally raping a ten (10) year old boy in the Penn State locker room shower at 9:30 PM and instead of utilizing his formidable physical prowess to come to the immediate rescue of this helpless child he merely followed bureaucratic reporting protocol and reported the incident to his superior, legendary Penn State Coach, then 76-year-old Joe Paterno; Former Coach Joe Paterno who mimicked McQueary’s minimally legal compliant bureaucratic responsibilities and told his so-called immediate superior, Tim Curley, the Penn State University Athletic Director, of this 2002 incident even though Paterno had ruled a very successful, prominent and lucrative Penn State University Football Program since his tenure as Coach had begun in 1966 and thus arguably held one of the most powerful institutional positions in the entire State of Pennsylvania and possibly in the entire United States given how iconic he became and how popular big-time college football has become; and finally, Tim Curley, the Penn State Athletic Director, who reported back to McQueary “a couple of weeks later” that in response to his Reporting Complaint the Alleged Monster’s keys to the locker room were taken away and that The Second Mile organization was notified.  Worse, Curley characterized McQueary’s account of the alleged rape of the ten (10) year old boy to the Grand Jury as merely “horsing around.”  (In fairness to Curley, I must point out that he told the Grand Jury that McQueary never mentioned that sexual conduct of any kind had taken place in the locker room.  However, if Curley’s tame Grand Jury characterization of this 2002 McQueary-reported incident were true,  why did McQueary possibly risk his coaching career by telling the iconic larger-than-life Paterno about it and then file a formal Complaint resulting in Curley rescinding the Alleged Monster’s locker room keys and notifying The Second Mile charity organization?  The Grand Jury similarly found these portions of Curley’s testimony NOT CREDIBLE.)

My foregoing analysis is just the “tip of the iceberg” because if it is proven that McQueary gave an accurate account of the 2002 incident then the people above were key players in a reprehensible cover-up of ongoing child abuse/molestation covering the period from the early 1990s through 2009/2010.

So, let’s not for one second characterize this as a Football Story.  This is a Criminal Child Abuse and Molestation Case which merely took place within a bureaucratic college football environment.  To that end, it must remind us how and why to protect children from cold-hearted Predators in ANY environment no matter what the perceived stature or personal consequence.

And I thought it took Real Men to play College Football.  These people should be ashamed of themselves as their minimal actions and monumental non-actions have crushed the lives of defenseless children who now stand as adults robbed of their childhood.  Damn, parents entrusted these people with their children.  God’s speed to the victims.

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Posted in Child Abuse, Child Molestation, Jerry Sandusky, Mental Health, Penn State University

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Chronic Illness & Wealth – Money Matters!

Posted on November 1, 2011 | 1 Comment

The Vicious Financial Cycle of Chronic Illness

There comes a time in the life of a person with a chronic illness when a vicious cycle begins and the consequences of their temporary or permanent inability to work due to their chronic illness is compounded by their mounting medical bills.  They get sick, so they can’t work; but they need to work, to pay for being sick.  As the chronic illness becomes more persistent, it becomes increasingly difficult to stay ahead of this cycle.  This is when the availability, or unavailability, of money and wealth becomes the sole determining factor of survival and happiness.  On second thought, survival is not so much affected because of the mitigating and temporary stop-gaps provided by medical insurance and credit cards.  However, living with the obligation to pay for these outstanding staggering and always increasing medical costs represents the “difference” between mere existence and truly living life and thus experiencing even occasional happiness.  If you do not have the money and wealth necessary to keep up with this chronic illness cycle, some look to Bankruptcy as a strategy for negating this “difference.”  But if the illness is indeed chronic in nature and/or incurable, there will always be the need for monthly credit to pay for future medications and the frequent necessary doctor visits.  However, if you declare Bankruptcy, this monthly credit will not legally be available to you and besides, what doctor will continue treating you if he or she knows that you will accumulate a significant balance and then have it extinguished through a legal proceeding such as Bankruptcy?   You are then stuck between a Rock and a Hard Place.  Welcome to my Life.  (Doesn’t it seem that there should be an option for “Medical Bill Bankruptcy” for this undoubtedly common predicament?)

Brought to my Knees by Crohn’s Disease

I am writing about this because most people are not aware of the aforementioned severe and unsolvable financial problems caused by chronic illness.  In my case, I tried to work while suffering from Crohn’s Disease and I was actually productive and successful for approximately 25 years (despite several physicians over the last few years suggesting that I apply for permanent disability) but a few years ago the vicious cycle described above took hold of me and I am now barely hanging on.  To that end, I have finally applied for Permanent Disability and am in the midst of the application process but I have serious concerns about my future.   People like me have to rely upon government assistance on a variety of levels and, while I am not blaming anyone for my fate and I am obviously not embarrassed by what I must do to survive, it nevertheless seems inherently unjust that a hard-working person, from the middle class, without family money or wealth, but with an earned law degree and MBA, can be brought to his knees by any chronic illness.

I can still “think” and write (and if you got this far I sincerely appreciate you reading my writings and being interested in what I have to say) but between Crohn’s Disease flare-ups, constant pain, unexpected hospitalizations, presently going through Chemotherapy for a rare lung condition called “BOOP” (which my doctors believe I contracted from medication I took for my Crohn’s Disease), the side effects of Chemo,  the side effects of the various Crohn’s Disease medications and the understandable emotional and mental difficulties in somehow trying to function to reach my fullest potential, it is impossible for me to be reliably productive.   In other words, there is now a “limit” to my potential and my body gives me no choice but to accept that.  Some people refer to that as “embracing” your illness but ….  It also looks like the unpredictability of my health will prevent me from forever owning a Dog which was a lifelong dream of mine.  This modest aspiration is going to be difficult to attain given the multitude of responsibilities a dog owner must be willing to shoulder which my inconsistent health and dire financial straits would seem to render virtually impossible.

 A Chronically Ill Person’s Purpose in Life

I know I am not alone in my predicament and mere words cannot convey how stressful it feels to be “attacked” or “squeezed” on all possible “human fronts” by a chronic illness such as Crohn’s Disease.  By “human fronts,” I mean the physical, emotional, mental, financial, professional and familial aspects of life.  But, writing about it is therapeutic for me and I want to bring attention to what must be a fallacy in our healthcare system as it doesn’t seem logical that my life be forever severely limited in its potential simply because I was born with a chronic illness instead of into a wealthy family.  Why should money matter when a person is victimized by a chronic illness for which they had nothing to do with in contracting?  That’s a rhetorical question as I “get it” and that’s life.  No problem.  I was dealt some rough cards which I now must master in the game of life.  Besides, there are MANY people who have it MUCH worse than I do.  My heart goes out to them.  Therefore, I assume my purpose in life is to share my experiences for the benefit of others similarly afflicted to help them or at least to let them know that they are not alone in navigating this extremely challenging human experience.  I also hope they enjoy my perspective and get “taken away” from their difficulties when they read about mine.  But, given the way things are, I’d be a fool not to also hope that my very attractive 70ish widowed Mom soon hooks up with a kind, compassionate and wealthy similarly situated single man who will help me separate the Rock from the Hard Place as therein lies a ray of hope and happiness.  After all, money matters.

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Posted in "B.O.O.P.", Bronchiolitis Obliterans with Organizing Pneumonia, Chemotherapy, Chronic Illness, Chronic Illness Debt, Crohn's Disease, Dealing with Chronic Illness, Disability, Hospitalizations, Life, Living w/ Chronic Illness day-to-day, Managing Chronic Illness, Medical Bill Bankruptcy, Medical debt, Unfulfilled Potential

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Physician and Patient; or Service Provider and Consumer?

Posted on October 13, 2011 | Leave a comment

I don’t “get” chronic Patients who refuse to see themselves as “Consumers” but rather as some separate classification of mere “Patient” and thus seemingly subservient to the never wrong (but usually late) Physicians or, worse, as a Person who’s been dealt some rough cards in Life and as a result should be treated by Physicians in some special standard required of a classification even higher than that of a Consumer.  Candidly, I think those folks are transferring their self-pity about their plight in Life onto third parties so as to at least derive some benefit from their chronic illness. Admittedly, this a strange perspective from a Patient Activist and from someone whose chronic medical problems has left him disabled and in dire financial hardship: perhaps; but I don’t blame Patients for taking either approach because I can certainly relate and I understand that human nature plays a big role in how we subconsciously handle our grave disappointment at having parents with bad genes, getting too caught up in the moment to wear a condom or being made into a chronic patient in some other manner.

However, let’s be objective at least for the purpose of this article and all admit that being a chronic patient is extremely expensive, at times painful, lonely and certainly life-altering.  But these downsides are ours to bear and all we can expect from our physicians, nurses and medical professionals is their respective best professional efforts and in the “transactional” patient process to be treated compassionately and with dignity.  It is not exactly the definition of being a “Consumer,” but for the purposes of establishing “Rights” that can be supported by our Legal System, besides those sought by suing too often for Medical Malpractice, being labeled as a “Consumer” seems to be the best fit and it also properly details the responsibilities and obligations of both Patients and Medical Professionals.

This question comes up a lot lately as the potential for “choice” and Web “recommendations” from patient communities in and around the health care social media world provides patients with viable options.  Moreover, physicians and hospitals are providing services which can be replicated by other local comparable medical professionals so the phrase, “Accountability,” is becoming the more appropriate measurability standard than simply suing for “Medical Malpractice” and hoping for the best.  I believe that is a GOOD development for all parties involved as thanks to the thorough work of effective Consumer Activists such as Ralph Nader, Elizabeth Warren, etc.,  Patients, by analogy, are beginning to be afforded the same legal rights as a Consumer and the work of Physicians is being held to a standard more in-line with that of a Service Provider.  However, due to the stakes involved, Medical Malpractice is still a viable option but only under the appropriate and extreme  circumstances.

I worry, though, that if a patient is never classified as a consumer, healthcare reform will never happen unless it is looked upon solely as a moral right.  Then if that happens, the patient’s consumer rights will likely be minimized just as they are in socialized medicine.  That’s just the Yin and Yang of Life.  Personally, I happen to think BOTH classifications should be attributable to the patient-physician “transaction” but I’d prefer the moral scale be used only in a “macro sense” to ensure healthcare reform so as to not place unreasonable patient transactional responsibilities upon medical professionals.  But as long as patients are paying for a medical service and there are several choices of service providers with whom they can spend their hard-earned money, I can’t see how patients cannot be considered consumers and thus protected by Consumer Law.

This classification of consumer will also start dismissing the myth that doctors are gods and knowledgeable about EVERYTHING besides what they dedicated their careers to studying and practicing.  In practicality, I respect Doctors for their skills just like I respect my Auto Mechanic for his but generally both are only more knowledgeable than most on the matters they have been educated on – as they should be. Notwithstanding the foregoing, some, however, act as if they are impervious to criticism EVEN IF that criticism is quietly done by “walking” to another provider-physician and NOT by “talking” via some posted emotionally-charged unfair opinion of that Patient-Physician transaction on the Web.  In that regard, and in my humble opinion, disapproval of professional transactional services is best made with your FEET and NOT with your MOUTH especially in this technological era where simple “word of mouth” is akin to whispering into the Grand Canyon and seeing your words on some Asian website only a few days later (I visited the Grand Canyon a few years ago and there were more Asians there than Americans, hence my Dennis Miller metaphor).  Medical Professionals who challenge these unrealistically disappointed patients in Yelp-like Web “Physician Rating Forums” should think twice before stooping to that level of “Technology Self Importance” UNLESS they are being libeled to such an extent (e.g., allegations of physical or sexual abuse) that they must seek LEGAL COUNSEL to preserve and protect their respective professional reputations.

The answer to this question is also significant from a LEGAL perspective because thanks to the work of the aforementioned Consumer Advocates and many like them, Consumers have TANGIBLE RIGHTS which can be enforced by various laws attributed to different industries which provide for REAL FINANCIAL DAMAGES and sometimes TREBLE DAMAGES (i.e., 3X the amount of the actual damages) such as in the case of Consumer Fraud.  Sure, a Patient has the basic MORAL RIGHTS stated above regarding professional dedication, compassion and dignity but at present there is no Legal Recourse for them. Instead the Patient must simply change Medical Professionals just as they would Auto Mechanics.  This will send a bottom-line message to the offending medical professional and at the same time it will cut down on frivolous Medical Malpractice lawsuits because patients hopefully will feel powerful enough as Consumers with choices to make as to whom shall provide them with their medical services.

Having said all of this on behalf of patients, it is important to point out that doctors have rights also and just because a Treatment Option does not turn out as expected is not necessarily grounds for a medical malpractice nor is it fodder for patients to share with some Web “Physician Rating” Site trashing the Physician for trying to help them.  While I have experienced instances of arrogant doctors failing to LISTEN who treat their patients like chapters in a textbook, more often than not the problems are caused by patient expectations of positive outcomes which  cannot be met due to the constraints of modern medicine or because of the limitations of that particular physician.  Hey, not everyone graduates first in their class.  If that is the case, patients need get second opinions and more closely evaluate their initial decision-making in establishing their Doctor-Patient relationship.  After all, if you brought your car into a Transmission Shop for repair and afterwards your car was actually worse for the wear or you waited longer than contractually promised or the price was much more than contractually bargained for, you’d simply go to another transmission shop and as a consumer sue for the tangible damages, if any.  You might even go on Yelp.com and negatively rate that initial contract-breaching Transmission Shop based on that experience but you would NOT “attack” the Transmission Owner or the person working in your car.

Come on, it’s just a Business of Service Provider and Consumer.

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Posted in Doctor Patient Relationship, Patients as Consumers, Physicians as Service Providers, Practice of Medicine and Consumer Law

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Breast Cancer, NFL Football & Crohn’s Disease Awareness

Posted on October 5, 2011 | 1 Comment

For those of you with Cancer, PLEASE read this article in the spirit in which it was written.  That is, to highlight the extraordinary “Breast Cancer Awareness” movement built by the various Breast Cancer organizations as a “model” for similar Charitable/Awareness Crohn’s Disease programs. I am particularly impressed with the Breast Cancer organizations and their October-long highly visible affiliation with the National Football League (“NFL”).  I am not in any way comparing the suffering of a Breast Cancer patient to that of a Crohn’s Disease patient.  I’m just getting tired of suffering terribly as a 25+year Crohn’s Disease patient only to see late-night cable television commercials cast a “Crohn’s Disease embarrassment” stigma to the illness.  Yes, the National Crohn’s & Colitis Foundation (“CCFA”) organization and the State and International CCFA Chapters do a great job at various “grass roots” fund-raising and support Initiatives but the mainstream education about Crohn’s Disease has not been successful as evidenced by so many intelligent people still not having a clue about its physical, mental, financial, professional, social, emotional and familial effects or about the pervasive nature of Crohn’s Disease.

I’m sure the hard-working and dedicated CCFA people around the world will criticize me for this article but I am merely reporting (and commenting on) the truth.  (Please note that it has been my experience that the CCFA Chapters around the world offer fantastic fund-raising and support assistance.  My criticism is limited to the more-corporate-minded folks who are trying to expand the world’s understanding of Crohn’s Disease such that they can attract additional funding for Research, Education, Support, etc.)  I know it is expensive and difficult to create effective mainstream television commercials to raise awareness about an illness but I believe money is being wasted on the Crohn’s cable television Spots that are created and aired at 3 AM because their focus is on the wrong aspect of Crohn’s Disease.  More specifically, these commercials paint afflicted patients as helpless victims of some mysterious illness, namely, Crohn’s Disease, which can strike at any time and then return to make life unmanageable.  Given the extraordinary people who battle Crohn’s Disease every day who nevertheless go on to accomplish their goals and in doing so utilizing their senses of humor and pure grit to cope with Crohn’s, I therefore resent this “pity approach” being taken by these advertising campaigns.  Let’s educate by celebrating these people instead of by scaring the general public about a dark, painful, unpredictable and bathroom-messy disease.

Instead, I wish these commercials would focus more on WHAT Crohn’s Disease IS and how different people SUCCESSFULLY MANAGE IT rather than on almost unthinkable doomsday scenario images which understandably elicit life-interrupting or life-changing thoughts like:

“Might I have to take a crap in the middle of a meeting at my corporate job?”

 “Should I turn down those tickets to the Yankees-Red Sox Playoff Game because the Yankee Stadium bathrooms are disgusting?”

“When my farts stink up the area my friends and I are hanging out at during the outdoor Tom Petty & the Heartbreakers concert – should I go along with everyone else and complain about the smell or do I cop to it?”

“Should I try and go to law school or is it a waste of my time because my Crohn’s Disease will unpredictably hospitalize me so many times during the three (3) years of law school that I’d never even graduate?”

“After being diagnosed with Crohn’s Disease, how do I re-write my ‘Life Plan’ in terms of which career to pursue?”

“What happens if my Crohn’s Disease gets worse, how will I afford Health Insurance?”

“When should I tell my new girlfriend that my excuses for LONG bathroom visits are not because I ran into an old college fraternity buddy along the way?” 

“When do I tell my new employer?”  “Do I even tell my new employer?”

“How can I travel and leave myself vulnerable to disgusting public toilets?”

“What if I have an emergency while sight-seeing, where are the public toilets?” 

I joke about these different almost “unthinkable” scenarios (and YES, the Fart at the Tom Petty outdoor concert has happened to me on more than one occasion and as long as the Fart is silent, I recommend the “go with the flow” approach and complain about the smell)  even though there is a great deal of truth to any smart person with Crohn’s Disease having to contemplate these types of questions at one time or another.  However, Crohn’s Disease and Inflammatory Bowel Disease (“IBD”) patients usually find a way around these “challenging” situations and the results are some VERY special and mentally tough children and adults. (Note: The acronym “IBD” is often used as a catch-all term for all “inflammatory” bowel diseases such as Crohn’s Disease and Ulcerative Colitis). These children and adult patients also develop sharp senses of perspective and humor simply because they must in order to cope with the nuances of their disease.  Therefore, mainstream television commercials about Crohn’s Disease/IBD should focus more on these brave patients/people and how they overcome the daily adversity they must face in order to live a relatively normal Life.

Nobody likes talking about “going to the bathroom” but that, unfortunately, is often a major part of having Crohn’s Disease.  Often losing a Breast is, unfortunately, a part of having Breast Cancer and that is also an uncomfortable topic to discuss.  Yet, somehow openly discussing the ravages of Breast Cancer has been more readily accepted by the mainstream than conversing in anything regarding Crohn’s Disease.  I think that is because of the wonderful educational and awareness work of the well-organized different Breast Cancer Charitable Organizations.  To that end, I am only pointing out that analogous Crohn’s Disease Charitable Organizations could learn a lot from them.

In terms of Breast Cancer and the NFL, October is National Breast Cancer Awareness Month and being caught up in my own medical battle which presently includes undergoing Chemotherapy Treatment, I only became aware of this while watching the NFL this past Sunday.  The NFL is only one (1) of MANY mainstream corporate sponsors who participate in what is an extremely well-run and effective charitable endeavor by these Breast Cancer Organizations.  Watching NFL Football Games and seeing the players all wearing PINK-colored Uniform apparel parts, in and of itself, demonstrates the influence and creativeness of these Breast Cancer Charities as the style-minded Machismo NFL players would never be caught donning pink clothes unless they were ready to be ridiculed by their fellow NFL players for “coming out of the closet.”  Perhaps this is not politically correct to say as there is nothing wrong with men wearing pink, homosexuality or with the implication of the color pink and homosexuality, but the NFL is a collection of the most “Manly” men in the world so that “pink” perception could be a problem.  But, the NFL Pink Campaign is extremely impressive, when you think about it, as these Macho Men are doing this to HELP A CAUSE that affects SO MANY WOMEN.

Additionally, kudos to the Breast Cancer corporate folks for sticking with their pink logo colors even within such a macho culture.  This is along the lines of what I mean by the Crohn’s Disease folks having a little fun with its “bathroom illness” Stigma simply for “entertainment” and educational purposes.  A little creativity and humor would go a long way toward attracting people toward wanting to LEARN ABOUT CROHN’S DISEASE.  (This lack of Mainstream Awareness with Crohn’s Disease also manifests itself as a Crohn’s Disease Patient problem because as you will see from the below “mock” conversations, it is hard to suffer so much from an illness that perhaps even your best friend has never even heard of.  Moreover, when I recently applied for certain medical-related Federal Benefits and tried to explain my various Crohn’s Disease-related debilitating issues, the nice Information “In-Take” woman stared at me with a blank look as if I were telling her about some rare disease I picked up while on safari in Africa with Angelina Jolie and Brad Pitt.  Suffice it to say, Mainstream Awareness runs deep and it is an issue that needs more attention directed at it by the dedicated folks who work at trying to help people like myself with Crohn’s Disease.  My contribution to that cause are “articles” like these, my Blog and my tireless efforts at helping Crohn’s Disease people who frequent the same Health Care Social Media Platforms as I do.  However, I am severely handicapped by my illness so ….)

Besides savvy corporate partnerships like that with the NFL, the public’s awareness that every October is National Breast Cancer Awareness Month attracts a wide, and thus diversified, array of potential charitable Breast Cancer partners and programs.  By way of example, yesterday morning I read the following on the Web regarding a “New Media” Breast Cancer charitable program between Susan G. Komen for the Cure® (i.e., one of the most widely known, largest and best-funded Breast Cancer organization in the United States) and Playboy that makes so much sense I am surprised other charities have not done this before given the consistent and worldwide allure of beautiful women and Playboy’s need to always further “corporatize” and maintain their mainstream reputation:

Playboy Enterprises, Inc. is pledging to donate 10 cents to Susan G. Komen for the Cure® for every new Twitter follower it receives during the month of October.  Each time a Twitter user follows Playboy at @playboy, the company will make a 10 cents donation to the Bunnies for the Cure Team – a group of more than 15 Playmates that will participate in the Race for the Cure in Los Angeles on March 24, 2012.  

I could go on and on about the innovative, efficient and effective manner in which money and awareness are raised by Breast Cancer Organizations, but I’m more interested in learning what can be done for Crohn’s Disease to accomplish these same goals.  In that regard, let me briefly convey the roughest “Awareness Hurdle” Crohn’s Disease faces by comparing the following two (2) mock conversations between two (2) friends at lunch.  Scenario One (1) is a lunch restaurant setting between best friends Francine and Lisa, after Lisa comes from a doctor’s appointment in which she is diagnosed with Breast Cancer. Lisa’s husband is Andrew.  Scenario Two (2) is the same lunch restaurant setting between best friends Richard and Michael after Michael comes from a doctor’s appointment in which he is diagnosed with Crohn’s Disease:

Scenario 1

“Francine, I don’t know how to even share this news with you but I have just been diagnosed with Breast Cancer by Doctor Shapiro.  That’s why I was late getting here as I had to be consoled by Andrew who was cool enough to come with me to what I thought was going to be a routine appointment.  In fact, it was Andrew who stopped me from cancelling our lunch when he pointed out that you might be the best person for me to spend time with after such a life-changing event. I am lucky to have such a cool and supportive husband.”

“Oh my God,” Lisa replies, “How far along is it, will you need surgery, chemo and radiation?   Before you answer, I just want you to know that I will be there for you at every step along the way, whenever you want.  With the support of Andrew and all of your friends rallying around you, YOU WILL get through this.”

“That’s wonderful to hear, Francine, but I gotta tell you that I’m scared.  I asked all those questions you asked me and the doctors don’t know yet as I must go for more tests the day after tomorrow.  I’m also going for the obligatory Second Opinion”

Francine puts her arms across the table reaching out for Lisa’s and she holds them tenderly as a sign of support and acknowledgement.  This embrace of sorts goes on just a little too long as people in the restaurant are starting to look so Lisa gives Francine a look of emotional appreciation and the two women resume their lunches never forgetting about the “elephant in the room” called Breast Cancer.

Scenario 2

“Rich, how’s the wife and kids?  I’ll bet your Son can already beat me in basketball?”

 “Michael, my Daughter can beat you in basketball!  Thanks for asking, though, everyone is fine.”

The waiter comes over to take their orders for lunch but Michael waives him off as if he is not done talking to Rich yet.  Rich’s attention hasn’t left the over-sized menu when Michael says, “Rich, I gotta tell ya’ somethin’ that happened to me this morning.”  Michael takes a long Pause which gets Rich’s attention.  “You know those intense stomach pains I always complain about and how sometimes exhaustion overtakes me out of nowhere?”

Rich, sensing Michael’s seriousness tries to lighten the mood a bit.  “Mike, anyone who is friends with you knows about your stomach ‘issues’ as we’ve all had our Plumber on speed dial ever since we bought houses and you started visiting when you moved back from California.”

“Very funny Rich.  But this is serious.  After undergoing several tests and something this morning called a ‘Small Bowel GI Series,’ my Doctor told me that I have ‘Crohn’s Disease.’  I’d never heard of it before but he said it is an ‘auto-immune illness’ which can exacerbate and become very serious. However, it also is a disease with a ‘broad spectrum’ so I may never get sicker than I am – but I’m worried.  The pain is getting more intense and every once in a while the cramps are so bad that it feels like I am going through, what I can only explain as Child Birth Labor, as the Cramps can last for HOURS until I have a bowel movement.  And ‘auto-immune,’ I have no idea what that means in everyday life.”

Rich, not exactly “Mr. Sensitive,” listened intently to ever word Michael said but then, as is his nature, uses humor to cope with the seriousness of the moment. “I’m goin’ with the Bacon Burger. You’ve eaten here before, what are you ordering?”

“Rich, I’m serious, I am very worried about this diagnosis of ‘Crohn’s Disease,’ what should I do?”

“Michael, I wasn’t tuning you out, I heard everything you said. It sounds like  you now have the perfect excuse to tell women when the smell of your Farts makes them WILT!  Seriously, ‘Croowns Disease’ is something I never heard of – so I’m sure it can’t be too bad.  You will be fine.” (Underline is for effect)

The guys drop the medical conversation and continue to a lunch of laughs.  There is no “elephant in the room.”

This “Awareness Hurdle” is something I come across almost every time I am asked about my Disability.  People whom I have met either socially, professionally or personally, simply don’t “get” how a 48-year old athletic looking man can get so sick and be so disabled from some “disease” they have never heard of and probably cannot spell correctly!!! Life is too short so I no longer even try to explain it as my latest medical problems are so serious that they have finally helped me overcome this Awareness Hurdle as the word “Chemotherapy” conjures up a certain image that is as serious as Life gets.  The phrase “Breast Cancer” also conjures up a specific Serious image which people all around the world respect and respond to.

What image does “Crohn’s Disease” conjure up?  Therein lies the rub.

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Posted in Bathroom Stigmas & Crohn's Disease, Breast Cancer, CCFA, Crohn's Disease, Crohn's Disease Mainstream Awareness, Disease Awareness Importance, Marketing Crohn's Disease

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Medical Patients are NOW the Communicators of Changes in Healthcare

Posted on September 29, 2011 | Leave a comment

September 19, 2011, Philadelphia, PA, Digital Health Coalition

Photo credited to: (C)2011, http://klickpharma.com. All rights reserved.

“Imagethink” Boards credited to Graphic recording by http://www.imagethink.net All rights reserved.

              A few weeks ago I was asked by WEGO Health, a Health Activist Portal Website company I am proud to be affiliated with, to take part in an Initiative devised by the Digital Health Coalition to help brainstorm a Digital Patient “Bill of Rights” along with Nineteen (19) other Patient Activists.  Despite my “challenging” present health condition, I accepted immediately, not for one second realizing that the 45 pounds I gained due to MONTHS of being on 60 MGs of Prednisone would require me to modify my “business attire” to a professional collared shirt, a fitted dark sports jacket and – - – - SWEAT PANTS!!!  That’s right; I was panicking while packing as all I could seem to find was my “Johnny Quest” sweat pants (which came with the underwear as a package deal) and my extremely bright New England Patriot sweatpants.  However, I did have a pair of NBA Warm-Up Black nylon “pull-away” pants but they had a White Stripe on them.  Desperate times called for desperate measures so my Mom used a thick black Magic Marker to stylize my NBA threads and once I put the shirt and jacket on I looked like a combination of Fred “Rerun” Berry” with a touch of an obnoxious 7-year old trying to act cool by “playing business.”  This is how I met my brethren of fellow Patient Activists.

               The above “Mural” or “Image Think Board” made quite an impression of me as it was drawn simultaneously with our meeting and attempted to capture the highlights of the fast and furious intelligent ideas that were being thrown about the room.  Luckily my sweat pants made me more comfortable than others so I not only learned a great deal but I enjoyed myself.

               Different participants have different opinions on the merits of our meeting so I won’t try to sum up their thoughts since that’s not fair.  From my perspective, I thought it was fascinating that an organization and group of intelligent business people thought it worthwhile to congregate Patients to get their input on “how things should be.”  Granted, this was a Closed Session so it was more like Patients articulating Dream Lists of “Needs” and “Wants” and enumerating the various gross inefficiencies and inadequacies of the current patient-doctor interaction.  However, the Image Think Board captured the general themes which can now be synthesized for information clarity and for “diplomacy” purposes.   I hope to remain a part of that process.

               Subsequent to the meeting, WEGO Health held some internal Video Conferences with a few of us who were privileged to attend the September 19th Digital Health Conference in Philadelphia, PA.  Thankfully, Skype and Video Conferences don’t capture one’s entire body so I was able to go “Johnny Quest” sweatpants without fear of being “outed” as a lazy Twelve (12) year old!  (Truth be told, I am going through Chemotherapy at the moment after a failed attempt at 3 months of 60 MGs of daily Prednisone to combat a potentially fatal lung condition I have which is best known by its acronym “BOOP.”  As a result, I look like the entertainer, Jerry Lewis, when he had a similar lung problem a few years ago and his unfortunate weight gain from the Prednisone made his face look like that of a blow-fish.  But I also feel like Fred Flintstone because, well, just because.  Let’s just say I have TREMENDOUS RESPECT for people who fight through Chemotherapy.)

            In any event, WEGO  wanted to know what I thought about the Conference, what I learned from the Conference and what surprised me about the Conference.  I’ve explained my main thoughts above and to elaborate I must emphasize that as “cutting-edge” as we “digital patients” have become, we don’t yet see that the mere congregation of “Us,” whether virtual via various Health Care Social Media platforms or in person such as at this Conference, we can be a POWERFUL FORCE.  Because of the specificity potential of technology, there is no such thing anymore as “Grass Roots” causes. Thus, somehow we find each other on-line and assess our common concerns and go from there.  Utilizing that criteria and assessing the issues discussed by these twenty (20) articulate digital patients, digital patients deserve a “Seat at the Table” when it comes to Healthcare concerns.  Moreover, Digital Patients can be organized to FIGHT against unfair practices of healthcare manufacturers who, for example, insist upon owning a patient’s “data” which emanates from their equipment.   This problem of possession, ownership and access to one’s Health Data was the issue I learned most about at this Conference so SIGN ME UP TO HELP FIGHT AGAINST IT.

               What surprised me most about the Conference besides us all beginning to understand that “The Patient Voice” is emerging as the “Communicator of Change,” was that some patients don’t yet see themselves as Consumers while others make Ralph Nader and Michael Moore seem like Cheech and Chong!   However, over time I am sure they (and we) will find a balance.

Read it here FIRST: September 19, 2011 marked the beginning of Medical Patients as Communicators of Change in Healthcare (and that Suits and Sweatpants might soon be the new “business casual” attire).

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Posted in Congressional Healthcare, Digital Health Coalition, Doctor Patient Relationship, E-Patient Bill of Rights, Health Care Social Media, Informed Patients, Patient Voices

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Ingredients for Change – The “Voices” of BOTH Student College Athletes & Medical Patients

Posted on September 17, 2011 | Leave a comment

With Student Athletes at Mainstream Collegiate Athletic Programs, the time has finally come for them have a “Voice” in how their rights are established and managed.  The sad reality is that breaking new ground with their rights will be as realistic as seeking sympathy from the devil.  But given how much money they generate, the National Collegiate Athletic Association (the “NCAA”) will soon have to at least “go through the motions” of listening to them because that exercise in futility is far less expensive than implementing change.  This got me thinking to my status as a “Professional Hospital Patient” and about the Hundreds of Thousands (or even Millions) of Chronically Ill Patients around the world.  Just like the Student Athlete is the Asset by which all other collegiate sports issues revolve around, the Medical Patient Voice is the benchmark of global healthcare Patient outcomes and also the standard of healthcare Consumer expectations.  Let’s be serious for a moment: the “Patient Voice” is so much more important than that of Student Athletes because Duration of Lives, Quality of Lives and Choices in Lifestyles and Professions are directly affected by healthcare decisions, laws, mandates and “Influencers.”  Thus Patient Voices MUST BE CONSIDERED in moving forward with Global Healthcare.  After all, who else knows what it is like to be a Patient?  Who else knows if the current Patient programs and protocols in place are maximizing Patient care?  Physicians?

Let’s see about that.  A few years ago in 2000 or thereabouts, when I was considering writing my Book, “Confessions of a Professional Hospital Patient,” essentially chronicling what goes on inside a Hospital hour-by-hour from a Patient Perspective, I began discussing the idea with a Physician-colleague at the wind-down of a local chapter Board Meeting of the Crohn’s & Colitis Foundation (“CCFA”).  While I have my issues with the politics of how the CCFA is often run, I sincerely applaud their efforts at helping people like me who must somehow manage life despite the increasingly pervasive challenges posed by Crohn’s Disease. I especially appreciate the volunteers who give of their time to help me in this battle.  THAT is the most selfless act a person can ever do, i.e., to give of themselves to help others expecting nothing in return.  I wish I could say the same for this Physician but he arrogantly started to question my veracity on the subject matter of being a Hospital Patient such that I could even qualify myself as an authority or “expert” to write such a book whereas he, as a Doctor, and seemingly an inherent authority on the subject matter, was more qualified.

At that point in my life I was hospitalized over 100 times for my Crohn’s Disease so I felt I had a solid authoritative voice on the subject matter and this Physician was familiar with my struggles in this regard so I did not understand why he was challenging me in front of the entire Board of Directors of the CCFA.  So I asked him how much time he spent, on average, with a patient during a hospital visit?  He replied that he wasn’t sure but it couldn’t be more than Six (6) minutes or so due to health insurance company rules and regulations.  I nodded my head in agreement that medical professionals are severely limited by such health insurance company rules and regulations but then I asked this Physician: “What then makes you think you know what goes on with a Patient inside a Hospital the other 23 Hours and 54 Minutes of the typical day?  Don’t you think that an experienced Patient like me has just a little more first-hand knowledge on this particular matter than you do?”

Mr. Know-It-All-Physician took a deep puff of his misogynistic almost-prop-like cigar and out of the corner of his mouth dismissively answered my question but did so addressing the rest of the Board so as to make a mockery or our conversation by saying: “That’s why I rely upon my Nurses.”  His physician-colleagues smirked as he packed up his materials to leave, since the meeting was winding down and our conversation was informal, but I smiled and retorted, “Thank God for Nurses because it is their system of ‘Reporting’ which ensures Continuity of Care for Patients like myself because if we Patients had to rely upon condescending physicians like you we’d be screwed.”  The room went silent and he turned to me and stuck out his hand and said, “Good luck with that Book, son.”  From my perspective, insulting and demeaning someone and then sticking out your hand as a symbol of “let’s agree to disagree on this” is akin to sending the woman you love flowers only when you are apologizing for something.  It is a meaningless gesture intended for cosmetic purposes only.  Additionally, as I was 38 years old at the time with a Law Degree and an MBA, and this arrogant Physician was well aware of my professional qualifications and skills having been the beneficiary of them on a few occasions, I just smiled and continued packing up my stuff and felt no need to shake his hand.  That was my way of saying, “You arrogant schmuck, I feel sorry for your patients.”

In terms of more recent examples of the importance of Medical Patient Voices you need look no further than September 16, 2011, when the well-respected News Resource, “NPR,” published an article written by Scott Hensley entitled, Doctors Call For Pullback On Narcotics For Chronic Pain, which was based on the findings/opinions of THREE (3) Doctors who published an editorial on the matter this past week in the Archives of Internal Medicine.  Instead of using narcotics for the management of chronic pain, these evidently healthy doctors advocated talking with patients about the limits of pain relief and give alternatives to opioid drugs, such as physical therapy or yoga, their due. Yoga?  Huh?  Are these doctors from Venice, CA?  Have these doctors ever been patients besides the day they were born?  Have any of these doctors seen the fabulous movie starring William Hurt entitled, “The Doctor?” Do any of these physicians have personal experiences with chronic Fibromyalgia, Arthritis, Spine-Fusion Surgery, Constant Back Pain, numerous surgeries, immune-suppressive Diseases such as Crohn’s Disease, Lupus, Pulmonary Fibrosis, etc.?

Do they even understand that a KEY ROLE of Pain Management is for the chronically ill patient to be able to nevertheless maintain a quality of Life without having to be admitted to the Hospital for Pain Relief each and every time their pain rises to the level that a Tylenol or a Rolaids cannot help them with?  Do these short-sighted doctors realize that it is even economically prudent to permit Pain Management to function in this regard as it is less expensive to dispense and monitor the narcotics than it is to admit patients to hospitals?  Or do they have such little pride in their professionalism and are so lazy that  taking the “path of least resistance” is their solution to this problem when a few bad apples of drug addicts and/or drug dealers are spoiling a Quality of Lifeline for Hundreds of Thousands of Patients suffering with chronic pain?   Do they also not realize that their actions have such far-reacting consequences that National Chain drug stores such as Rite-Aid don’t even stock the powerful, long-lasting narcotic, Oxycontin, due to the aforementioned potential abuse situations?   I only learned of the Rite-Aid situation last week when I innocently walked into a store near my Pain Management Physician’s office seeking to fill my prescription for Oxycontin only to be essentially thrown out of their store under the presumption that I was a drug abuser or drug seller.  I felt like Leper thanks to the effects of a few spineless comments in the media made by just a few Pain Management Physicians.  These days, I guess, Patients in true need of FDA-approved Pain Relief drugs are made to feel like criminals.  What a fool I was thinking it was hooded sweatshirt when all along it was my FDA-approved prescription!

In fairness to the author of the NPR article, namely, Mr. Scott Hensley, a retort was obtained from Dr. Robert Chou, who heads the group at the American Pain Society working on guidelines for clinical practice.  Mr. Chou was then quoted as saying:

While it’s important for clinicians to be more thoughtful about who they prescribe long-term opioids to and to stop opioids when they aren’t helping or there is evidence that it is causing problems, the American Pain Society believes opioids have a role in the management of chronic non-cancer pain in carefully selected and monitored patients.

There is evidence from long-term observational studies and evidence coming from some long-term clinical trials that opioids are effective for improving pain in some patients.

For example, we do not believe that a trial of low doses of opioids should be denied to a low-risk woman in her 70′s who has severe hip arthritis, who may be able to garden and walk with decreased pain on it.

While the data on overdose deaths and abuse of opioids should concern all members of society, it does not justify an extreme blanket position of no opioids for chronic non-cancer pain.

Just so no one can accuse me of being a mere spineless “opinion,” I have been a chronic Pain Patient for over 25 years who is “dependent” on narcotic pain medications through the careful administration and watchful-eye of Pain Management Specialists for treatment Severe Crohn’s Disease which has necessitated almost Twenty (20) serious surgeries, depleted my immune system such that I now have Bronchiolitis Obliterans with Organizing Pneumonia (i.e., “BOOP”) and am in the middle of a course of Chemotherapy to treat this Life-Threatening BOOP Lung Condition as a 3-month daily dose of 60 mgs of Prednisone did not cure the BOOP and only caused a Crohn’s Disease Flare-up for which I can essentially take no medication because ALL “Anti-TNF Agent” drugs such as Humira and Cimzia are off-limits to me now since the Doctors believe my exposure to Humira and Cimzia in treating my Crohn’s Disease is why I came down with BOOP.  The resulting joint pain from the Crohn’s Disease Flare-up is so debilitating at times that without Pain Medication all I can do is lie down on a couch, cry and pray for the aforementioned mystical “Yoga” relief these spineless Pain Management Physicians are suggesting.  Maybe I am lacking special candles? Perhaps I need a different Yoga uniform?  In all seriousness, is it not torture and/or cruel and unusual punishment to withhold these drugs from me when my various painful conditions are painstakingly documented and I am seeking the medications from Board Certified Pain Management Physicians?

Lastly, the dangers of Doctors, Politicians and other people with easy access to mainstream media using Public Access forums to advocate medical policy is no more demonstrative than by the recent comments made by Republican Presidential potential Candidate Michele Bachmann on Tuesday, September 13, 2011, linking the HPV Vaccine to “mental retardation,” when she told NBC News she had heard from a woman who said her daughter “took that vaccine, that injection, and she suffered from mental retardation thereafter.”  All politics and other intentions aside, such manipulations of the Mainstream Media to affect years of scientific research is dangerous and absurd and can only lead to BAD MEDICINE.  Supposedly and scientifically, this HPV Vaccine has been proven to prevent Cervical Cancer when given to teenage girls.  Accordingly, advocating anecdotal stories that, if taken at face value, could KILL MANY WOMEN with Cervical Cancer, is no different than the aforementioned spineless physicians taking the path of least resistance with respect to Pain Management treatment when they have no scientific or personal date to back-up their claims. Oh wait, it is different.  Ms. Bachmann could be putting REAL LIVES AT STAKE!  Do people not see how dangerous this situation is and that this is the classic example of the “slippery slope” often referred to in law school   If Ms. Bachmann had relayed a “story” about, for example, Crohn’s Disease not being so pervasive and that too much of a big deal is made about it because a woman she met while touring the country told her so, I would be apoplectic.  This has to stop.

These stories are all crap and they are why Credible “Patient Voices” and Health Care Social Media (“hcsm”) platforms are more critical now than ever before.  It is why I will be participating in an interactive discussion and workshop, courtesy of WEGO Health, in the September 19, 2011 “Digital Health Coalition” being held in Philadelphia, PA, for the purposes of creating an “E-Patient Bill of Rights” for the global healthcare industry. I am looking forward to sharing my insights and to listening to those of others for only then will our healthcare system have a diversified set of Rights and Responsibilities to build upon.  Just like the Student Athlete is the Asset by which all other collegiate sports issues revolve around, Medical Patient Voices are the benchmarks of global healthcare patient outcomes and they are also the standard of healthcare consumer expectations.   I am honored to be asked to contribute to that meaningful conversation.

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Posted in Crohn's Disease, Digital Health Coalition, E-Patient Bill of Rights, Informed Patients, Patient Voices, Patients as Most Valuable Resource, The Empowered Patient

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“Something Fine” by Jackson Browne – THX 4 a Legacy of Authenticity

Posted on September 9, 2011 | Leave a comment

Jackson Browne – “Something Fine” on his vintage Gibson Roy Smeck from fretboardjournal on Vimeo.

Every once in a while you come across a song which is truly extraordinary in that it captures a genuine emotion.  Listening to it also brings you back to other times in your life when the song meant something different.  Yet, you marvel at how the change in meanings never dilutes the song’s authenticity of emotion.

“Something Fine” is such a song and it makes me smile every time I hear it because it became the soothing voice in the Soundtrack of my Life ever since the first time I heard it at Camp Na-Sho-Pa (Bloomingburg, NY) in 1975 when one of my “cool” counselors turned me on to Jackson’s 1st album, “Saturate Before Using.”  I literally hear the song in my mind every time after I am blessed to experience something really cool like a great night with a woman, a fun dinner with close friends, a gorgeous afternoon playing golf, etc.

But this morning when I became aware of this video clip while reading the Bob Lefsetz “Letter” (which I HIGHLY RECOMMEND as a source for cutting-edge information about music, life and business that will always get you thinking), “Something Fine” made me smile, look back on my Life and appreciate all of my good fortune.  Yes, unfortunate things have been mixed in along the way (“That’s Life” as the song says) and I am presently in a medical life-threatening situation but watching Jackson Browne sing “Something Fine” with such passion at approx. 63 years of age when he wrote and first performed the song in his early 20s is incredibly inspiring because it still has the same profound effect on me.  You see, Jackson’s performance reveals the authenticity of his talents and that creates a Legacy to which I aspire with everything I do in my Life.  Authenticity is never my goal, nor was it, I suspect, with Jackson Browne; it is simply the byproduct of hard work and a passion to succeed at what you set out to do.

Accordingly, I guess listening to, and watching, this version of “Something Fine” made me feel as if I am on the right path after all these years.  That’s always a good thing to know.

 

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Posted in Crohn's Disease, Jackson Browne, Life

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