Tag Archives: Fibromyalgia

Dr. Greenbaum, Rheumatologist – WORST DOC of the YEAR!!!!

December 4, 2012 – I came upon this Blog Post late last night when a respected Patient Advocate Colleague of mine, Casey Quinlan, had re-tweeted it with the added commentary that, “it’s only Monday but here’s my pick for Douche of the week.”  First off, I apologize to those who are offended by the “salty” language but please hold off on any judgment until you read what this Rheumatologist, Dr. Larry Greenbaum, wrote in his Blog.  Secondly, I have come to know Casey Quinlan as a strong, respectful and articulate woman who is ALWAYS on the right side of a debate so when she uses such language to emphasize a point, there must be a good reason.

Judge for yourself, as pasted directly above is the Blog Post made by Dr. Greenbaum, dated November 30, 2012, entitled, “Kiss my …”  After reading it and my email response to Dr. Greenbaum below, you will understand why this Blog post SO repulses chronic patients like Casey and me and why it prompted me to write to Dr. Greenbaum below.  In that regard, PLEASE feel free to comment on THIS Blog Post and/or to send Dr. Greenbaum an email of your own as he posts his email address on the Blog as rhnews@elsevier.com.  Finally, for what it’s worth, I think Casey Quinlan was onto something by crowning Dr. Greenbaum “Douche of the Week,” but after closer inspection of his Blog post, I hereby nominate him for “Worst Doc of the YEAR!!!”  What do you think?

December 4, 2012

Dear Dr. Greenbaum:

The Patient Perspective

I do not have a medical practice like yours.  In fact, I’m not even a doctor but I’ve been battling the autoimmune and incurable illness, Crohn’s Disease, for the past 30 years so I am somewhat of a “Professional Patient.”  With that experienced perspective, I read your 6-paragraph Blog post dated November 30, 2012, entitled Kiss My … and I was repulsed by your utter disrespect and lack of professionalism, compassion and patience for your 75-year-old patient. Your behavior is unacceptable in ANY medical specialty but especially so in Rheumatology because that medical specialty is usually one of last resort for patients with chronic and/or inexplicable pain or conditions which other medical specialties are not able to identify.  As a result, they refer these patients to doctors like you who then assume the great responsibility of often being the last bastion of hope for these long-suffering patients. But to learn that you vilify certain patients who merely “hassle you” in a written, GLOBAL forum, for all the world to read, for the rest of time, is disheartening at best and “creepy” or even criminal at worst, in terms of your compliance with HIPAA requirements and possibly even Billing Fraud, depending upon your actual billing practices in the event you accept Medicare and Medicaid patients and payments.

HIPAA & Patient Privacy

More specifically, I believe your November 30, 2012 Blog post about this 75-year-old’s patient’s medical ailments and complaints is an egregious violation of at least the spirit of the “HIPAA” law which was enacted to require Providers to follow procedures that ensure the protection and confidential handling of protected health information such as ‘personally identifiable health information’ held or disclosed in any form including orally, written and electronically. The HIPAA laws are simultaneously general and specific and often difficult to abide by or enforce, except if you follow a simple logical rule.  That is, treat ALL patients’ privacy and records with the same conscientious care you’d use in handling the medical records of a beloved family member.  While you did not disclose this 75-year-old’s name, you may have disclosed enough information in this Blog post that he, his family members and his former physicians, might be able to figure out exactly whom you were talking to, and about, in the Blog post.  Accordingly, and applying the aforementioned rule of logic (and compassion), if that was your 75-year-old mother, would you want a fellow physician to talk about her like that to a GLOBAL audience via a written Blog post?

The following passage is the 1st paragraph of your Blog post:

If your practice is like mine, you probably don’t bill for “consult level 5″ very often. That is the most expensive level of care on our office super-bill, and I usually reserve it for patients with huge volumes of records, patients who take an inordinate amount of time, or patients who annoy me in some other extraordinary fashion.

Billing Annoying Patients More than other Patients

As a chronic patient with voluminous medical records, I can surely understand your policy of charging a patient more if he or she requires a significant additional amount of your time than the typical patient.  That said, and I do this with my doctors, if a patient comes in for a consult and clearly demonstrates that he or she organized their medical records in a succinct and logical fashion out of respect for your time, there should be no additional charge.  After all, in such a situation you are merely doing your job but in a more diligent manner due to the rigors associated with the complexities of a particular case.  Regardless, I guess doctors could disagree about billing practices in such situations but YOUR credibility is lost when you stated you’d charge more for “patients who take an inordinate amount of time, or patients who annoy me in some other extraordinary fashion.

Who is to judge if a patient is taking an “inordinate amount of time?” Maybe they are handicapped, disabled or simply nervous about telling you their story after being disappointed or intimidated by so many doctors on their journey to simply being diagnosed?  Maybe their underlying illness causes a condition which affects their ability to act in a “normal” fashion?  Have these possibilities ever crossed your mind when you devised your God-like billing practices which I am sure run afoul of Medicare Billing Practices?   What about the patients who “annoy [you] in some other extraordinary fashion?”  I am quite familiar with the “Current Procedural Terminology” billing codes or “CPT” codes and I have never come across a CPT code for charging a patient more simply because they are a pain in the ass.  How do you justify that?  Don’t you realize that by admitting you do that, you are possibly committing billing fraud?  Again, have you ever stopped to think that these “difficult” patients are merely scared from having fought through the arduous bureaucratic healthcare system in the United States?  If that’s the case, do you really think it is fair to force them to, in essence, pay a “tax” for having put up with pain, disappointment and frustration?  If life were fair, these courageous folks would get a DISCOUNT for all their troubles!

In Paragraph 2 of your Blog post, you state:

I charged him level 5 for taking so much of my time, for bad-mouthing his previous doctors, and for incessant whining. Although he had developed RA only about a year and a half ago, he gave a long and ruminating description of his treatment, or mistreatment, as he saw it. (Underline and Bold Emphasis Added.)

You Charge Extra for Whining Patients?

So, you charged this 75-year-old man a higher patient fee than usual because he was bad-mouthing previous doctors, whining about his situation and providing you with a boring patient history?  As a person trained to be a medical doctor, what type of “telepathic” training enables you to make these decisions?  Perhaps the patient wasn’t “bad-mouthing” his previous physicians and just trying to tell you the truth about how he was treated by previous physicians?  Or, are you of the belief that physicians can never be wrong nor can they ever mistreat a patient?  We both know that the truth is probably somewhere in the middle but you seem to classify anything a patient says as “suspect” simply based on its source.

Then you cited him for “incessant whining” as if you knew exactly what it felt like to go through all he had to in order to get to see you, such that you knew what to differentiate as “whining” from what was simply the articulation of chief medical, physical or emotional complaints.  How arrogant are you?  I suspect the only pain, disappointment and frustration you feel is when the new Mercedes Class of cars comes out and your present lease is not yet expired.  Do you have any idea what it is like to do battle with the pervasive effects of an incurable, painful chronic illness like Rheumatoid Arthritis (“RA”)?

What do you know about suffering from Rheumatoid Arthritis?

Do you have any idea about the physical, medical, mental, financial, emotional, professional, psychological, social and familial effects a chronic, inflammatory, autoimmune disease like Rheumatoid Arthritis can have on a patient?  You obviously DO NOT as demonstrated by you classifying this troubled 75-year-old patient as one prone to inappropriate “incessant whining” and writing that in a Blog for the whole world to read as if THAT will educate people about RA and help them cope with the horrific disease.  What’s worse is that you used these observations to justify charging this poor patient more than usual when it is this type of RA patient who needs a doctor willing to show some compassion and understanding and spend an extra few minutes with him.  Based on your “golf club bedside manner” and “scale of annoyance billing practices,” you should be barred from treating patients with chronic diseases like RA which have such serious pervasive effects.  Moreover, based on this Blog post, I wouldn’t trust you cutting my dog’s toenails, and I’m not even through the 2nd paragraph!

Do you discount bills when YOU Whine to Patients?

Then, before the 2nd paragraph ends, you WHINE about the apparent thorough Patient History you were given by this 75-year old.  Following your example, should this patient then get some type of refund for the amount of whining you did during the consultation? You tempered this “Patient History” with the phrase, “as he saw it.”  From what other perspective was this patient supposed to give you a Patient History?  Do you put ANY stock in the words of patients?  Have you forgotten that your most effective tool in medicine is your ability to LISTEN?  Then you included very specific patient notes in this Blog post about the patient’s response to Prednisone.  I reiterate that such a specific notation could help identify the patient and then cause a HIPAA violation.  I am only commenting on this Blog post because YOU made it public and I want to make sure you don’t do this again with another patient.

A 75 year-old just being 75

In Paragraph 4 you reveal one of your trade secrets: If all else fails, examine the patient.”   Apparently, it was a very long patient interview because the man is 75 YEARS OLD and that logical concept seemed to escape the grasp of your narrow mind.  While examining him you added that [j]ust for good measure, he spent some more time bad-mouthing his previous foot-doctor.”   Dr. Greenbaum, this man is 75-years-old and “talking” is what a person of his age does.  But that does NOT give you license to broadcast his “issues” on a Blog for the entire world to read especially in such a negative light whether he has a little Dementia, he had valid issues regarding his previous foot doctor or he was just being 75.  In Paragraph 5 you indicate he had a “bunch of other chronic medical problems including neuropathy.”  Was was it then a surprise to you as to why he had such a long Patient History?  Maybe he was recently widowed and didn’t know how to organize his medical records or thoughts properly. Did you ever think of that or do you simply look at test results or use you telepathic skills to diagnose and treat a patient?

You have the sincerity of a 3-Card Monty Con Artist

In Paragraphs 5 and 6 you indicate that you and he exchanged banter about you knowing his neurologist. You indicate at the beginning of Paragraph 6 that “I always think patients feel a little more confident when their doctors know one another.” However, you prefaced this logic saying “i[t] was a throwaway comment on my part….”   What does that mean?  Do you really want to make a “connection” with a patient and make them feel comfortable or are you doing the least amount of connecting as possible just so the patient doesn’t out you for the jackass that you are?  Then you explained the weird response you had elicited from this 75-year-old but, even by your account, it seemed like the patient was “playing” with you and trying to make some sort of “connection,” albeit a strange or unorthodox one, just as you claim you sought out to do by indicating you knew his neurologist.  Observing the situation you wrote: “He didn’t seem demented or hateful, just weird.

You Have the Bedside Manner of a Handball

Dr. Greenbaum, by your OWN ACCOUNT, the only person who seemed weird in the encounter you chronicle in this Blog post is YOU. What does “hateful” have to do with anything in a physical medical examination, especially one in which you couldn’t care less (and didn’t ask) about any stressful situations in his life affecting his medical condition?  The fact that you wrote this all down and included it in a Blog post seems indicative of your instability as a person and possible incompetence as a physician.  You’ve potentially violated a patient’s privacy and simultaneously revealed how you go about treating and billing a patient.  You have the bedside manner of a handball and if there is a place in medicine for you, it is either in research or radiology, where your training can serve you and others well, and you will not have to interact with any live patients.

Become a Radiologist or Live up to your Responsibility

Lastly, if this 75-year-old man was your Father or Grandfather and you came across this Blog post on the Web, how would you feel?  You, as a Rheumatologist, are the source of last hope for many chronically ill patients and they deserve to be treated with more compassion and dignity. I think your Blog post is disgusting and extremely troubling and I only hope that my informing others about this Blog post helps you take an honest look at how you are treating patients who, for whatever reason, rely upon you greatly.  PLEASE try and live up to that responsibility.

                                                                        Respectfully yours,

                                                                        Michael A. Weiss

Pain Patient Retort to CNN’s “Deadly Dose” program re: Prescription Drug Overdoses

My respectful 7-minute Video “Retort” to CNN’s & Dr. Sanjay Gupta’s recent show “Deadly Dose,” which revealed the growing tragic problem of narcotic/opioid prescription drug overdoses.  My perspective is that of a chronic pain patient who is worried about new laws addressing this tragic problem but over-reaching and, in doing so, “throwing out the baby with the bath water,” and making lives of chronic patients MUCH more difficult.

 

 

 

Chronic Disease – a Teenager’s WISE Perspective

This Video features an email I received from a then-19-year old, Jennifer Wheeler, now a talented artist in college who was battling various social aspects of living with Chronic Illness and Crohn’s Disease.  Yes, you can be THAT BEAUTIFUL and have Crohn’s Disease.  When her Date asked, “Is Crohn’s Disease contagious?” she knew there was something not being communicating to people about the etiquette of inquiring about chronic disease.  After listening to her being upset, I thought her insights and perspective were wise, prophetic and truly indicative of what people go through who must battle chronic illnesses of all kinds.  So I asked her to write down these thoughts and send them to me in an email as I thought this would be a therapeutic exercise and it would help her get through the experience.  However, when I received her email I was impressed with her overall Perspective and how she was able to communicate various issues about Chronic Illness that often go unaddressed.  To that end, I told her that I wanted to share it with others because it contained many nuggets of helpful information which I thought they (and many others) could use in coping with their respective chronic illnesses.  As a testament to Jen’s strength, courage and genuine interest in helping others, she didn’t hesitate for a second and gave me the permission I needed and the result is this very powerful Video.

(Please note:  I will be slowing down a bit with my typical production schedule of One (1) Video per week partially due to my continuing health issues and also because I have started to pen what I hope to be the most helpful Resource about “Managing Chronic Illness” tentatively called “Chronic Illness:  Truths, Tales and Tips.”  Depending on my Health, I hope to finish it in a few months and have it out as an eBook and hopefully also as an Audio Book by mid- to late- summer.)

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Chronic Illness & Dependency on Narcotic Pain Medications

With Chronic Illness usually comes chronic pain.  There are many ways to deal with Pain but the most effective and immediate methods usually involve Narcotic Pain Medications.  However, the Medical Practice of Pain Management is extremely complex and Narcotics can sometimes create a chronic problem all unto itself as the Patient battles to stay within the confines of “Dependency” as opposed to “Addiction.”  This Video explores this difficult chronic reality through the personal experience of the Producer who has used these medications to treat Severe Crohn’s Disease for many years.

This is part of my “Two Minute Drill” Series of Healthcare Videos.  The phrase is taken from the NFL, i.e., US Professional Football, and refers to that intense time of the last 2 minutes of the end of the 1st Half, or of the Game, when teams use a no-nonsense carefully timed 2-Minute Drill to most efficiently move down the field to score points.  With Television Commercials, the 2-Minute Drill is often 10-15 minutes of “Real Time” and that affords me the ability to still use the phrase when my succinct Videos are sometimes 4 Minutes in length!  I hope you enjoy the Content and that it provides you with mental stimulation and creative inspiration.

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

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 McFaddenABC News correspondent and “Nightline” Anchor.

Frank FritzOne 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 McCreadyThe lead guitarist for the band, Pearl Jam.

David GarrardFormer starting quarterback for the NFL’s Jacksonville Jaguars.

Mary Ann MobleyThe Brandon, Mississippi beauty who was crowned Miss America in 1959.

Shannen DohertyFormer 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” SteeleHis 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 MeninoMayor of Boston, Massachusetts.  The longest-serving Mayor in the history of the city.

Kevin Dineen19-year National Hockey League (“NHL”) veteran career who is now coach of the Florida Panthers.

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

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 MedicineInstead 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.

The often LONG “Journey down the Road to Correct Medical Diagnosis” – Part 1 of 2

“Goin Down the Road Feelin’ Bad” is one of my favorite Grateful Dead songs and its title and lyrics were my inspiration for trying to help with a very serious problem Patients face when they know something is wrong with them but they cannot get it diagnosed or it takes years to be properly diagnosed and then treated.  Medical Tests don’t pick up these problems, your symptoms are not consistent with any “textbook” diagnosis and then Doctors with the best of intentions start questioning whether your problem is more psychological than physical.  This is when beloved Friends and Family Members start to chime in, again, with the best of intentions and with your best interests at heart, and that’s when the often marathon-like time-frame and usually lonely path of seeking this seemingly elusive diagnosis and then getting it properly treated can have long-lasting emotional effects.  In many cases, the emotional distress and mental torment, of what I refer to as the “Journey to Medical Diagnosis,” can be more serious than the underlying physical/medical problem which initiated the Journey.

In the almost Thirty (30) years of battling the auto-immune and incurable “Crohn’s Disease,” I have had MANY of these difficult to diagnose problems and in some cases Medical Professionals erroneously were too eager to attribute them to my perplexing Chronic Disease when the typical Diagnostic Tests were Negative and my symptoms simply didn’t match up with anything else.  However, I ALWAYS “Listen to my Body” and it tells me to refuse to accept such “textbook” and vague approaches.  That’s when I started to seek ANSWERS.

At first, I failed a few times but was wise enough to learn from my mistakes.  But each time I went on this Journey, the one constant which proved to be determinative of success was my unflinching resolve in “Listening to my Body.”  In this approximate 7-Minute Video, I share what I have learned so that you will have success in ultimately getting diagnosed and treated and hopefully you won’t have to suffer the emotional effects typically caused when you embark upon this Journey down the Road to Medical Diagnosis.  While it is not always possible to stave off ALL of these emotional effects, I am sharing tips and Patient Tools that will enable you to at least be aware of them so that you or a Friend or Family Member can help you keep them “in check.”  Part 2 will be posted next week.