Monthly Archives: November 2011

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

Posted on November 29, 2011 | 4 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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