REAL Healthcare Reform = ObamaCare + eHealth + mHealth

ObamaCare is looked upon both positively and negatively as the end-all / be-all of Health Care Reform in the United States.  It is politically charged and subject to nationwide debate and likely repeated judicial challenge.  However, it need not be so divisive as it seems to have actually inspired and triggered other significant Healthcare reforms and Healthcare entrepreneurial advancements via legitimate Free Market Solutions, namely, “eHealth” [Electronic Health] and “mHealth” [Mobile Health].  This 4-Minute Video explains this interesting and ongoing technological development in Healthcare Reform.

 This is part of my “Two Minute Drill” Series of Healthcare Videos.  The phrase is taken from the NFL, i.e., United States 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 often takes 10-15 minutes of “Real Time” and thankfully that affords me the ability to still use the phrase when my succinct Videos are sometimes 4 to 5 Minutes in length.  I hope you enjoy the Healthcare Content and that it provides you with mental stimulation and creative inspiration.

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Healthcare Reform = Combination of ObamaCare, eHealth and mHealth

ObamaCare is looked upon both positively and negatively as the end-all / be-all of Health Care Reform in the United States.  It is politically charged and subject to nationwide debate and likely repeated judicial challenge.  However, it need not be divisive as it seems to have actually inspired and triggered other significant Healthcare reforms and Healthcare entrepreneurial advancements via legitimate Free Market Solutions, namely, “eHealth” [Electronic Health] and “mHealth” [Mobile Health].  This Video explains this interesting and ongoing technological development in Healthcare Reform.

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 takes 10-15 minutes of “Real Time” and that affords me the ability to still use the phrase when my succinct Videos are sometimes 4 to 9 Minutes in length.  I hope you enjoy the Healthcare Content and that it provides you with mental stimulation and creative inspiration.

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What are the most Effective Patient Tools for Today’s “Assertive” Medical Patient?

From Twitter to Facebook to Google/Yahoo Key Word Alerts and Groups and the technological conveniences of Smart Phone Memory Chips and Health Care Mobile Phone Applications (or “Apps”), the 2012 Assertive or Empowered Medical Patient has much to count on in terms of Patient Tools.  This 4 Minute Video provides an Overview.

**An slightly abridged version of this Video appears on my CNN iReport site

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Reprise – You Know You Are A “Crohnie” when …..

A “Crohnie” is a person with Crohn’s Disease. However, given the similarities in the hassles, challenges, health insurance codes and the often excruciating pain associated with Ulcerative Colitis (“UC”), Irritable Bowel Syndrome (“IBS”), Colitis and the “catch-all” Inflammatory Bowel Disease (“IBD”), Crohnies view UCers, IBS, IBD and Colitis folks as much respected Brethren and thus, fellow “Crohnies.”  To the Crohnie, each is like a “Brother from another Mother” and therefore the term “Crohnie” must include them.

Accordingly, as a moving homage to Redneck Comedian Jeff Foxworthy:

You know you are a ‘Crohnie’ when….

You know You Are a Crohnie when you believe, as per Doctor’s Orders, that Vodka is a permitted “Clear Liquid.”

You know You Are a Crohnie when your Twenty-Something Nephews think they can Fart at your House with impunity.

You know You Are a Crohnie when you rationalize taking the drug Prednisone as a license to eat anything, at any time.

You know You Are a Crohnie when you rationalize taking the drug Prednisone as a license to act like a lunatic.

You know You Are a Crohnie when you always have a Roll of Toilet Paper in Ur Car.

You know You Are a Crohnie when Turnpike “Rest Areas” are really fodder for Great “Public Bathroom Disaster” Stories.

You know You Are a Crohnie when you are now confident enough that you can brag about funny Public Restroom stories & the number of toilets you’ve stuffed.

You know you are a Crohnie if you’ve given up explaining to friends why you can eat at a McDonalds, White Castle or In-N-Out Burger with no problem but still can’t eat popcorn or a healthy salad without having a Crohn’s flare-up.

You know You Are a Crohnie when you are watching TV with your Mom and both of you have your own respective Air Freshener Spray Cans.

You know You Are a Crohnie when said Air Freshener Spray Cans are BOTH aimed at YOU, ready to spray, “with the safety off.”

You know You Are a Crohnie when you set the dinner table with a knife & fork but all you’re “eating” is “Ensure.”

You know You Are a Crohnie when all you own is Black underwear.

You know You Are a Crohnie when the glove compartment AND the trunk of your car both contain Imodium.

You know You Are a Crohnie when you are less embarrassed buying Enemas than Condoms.

You know You Are a Crohnie when you know “Milk of Magnesia” doesn’t taste like “Milk” at all.

You know You Are a Crohnie when you’ve become an expert of the potency of the different brands and scents of Air Fresheners.

You know You Are a Crohnie when you look forward to hospitalizations because there you can fart with impunity.

You know You Are a Crohnie when people get you Gift Certificates to your favorite Pharmacy during the Holiday Season.

You know You Are a Crohnie when you must own an industrial strength “Snake” because no Plunger can free your Home Toilet of the occasional large “log.”

You know You Are a Crohnie when you even designate a “Home” Toilet.

You know You Are a Crohnie when you bring your own pillow to the Hospital.

You know You Are a Crohnie when you experience euphoria at a rock concert or public sporting event after passing silent but potent gas, estimating its invisible airborne travel time and then seeing it affect the olfactory senses of Sections of People, one Patron at a time.

You know You Are a Crohnie when you can discern between different Air Freshener Spray Scents to obtain the most powerful one.

You know You Are a Crohnie when your abdomen sometimes feels like you’ve been trapped underneath an earthquake-ravaged building and all of the weight is on your torso.

You know You Are a Crohnie when no matter how many times you tell people that you are not feeling well or that you are going through a Crohn’s flare-up they always respond: “But you look great!”

You know You Are a Crohnie when you reserve your airplane seat around the location of the plane’s bathroom.

You know You Are a Crohnie when the Transportation Security Administration (“TSA”) starts looking through your Carry-On Bags but gives up and waives you through the Gate after they see Dulcolax, Metamucil, Glycerin suppositories and three (3) changes of black underwear.

You know You Are a Crohnie when you run into an old friend while purchasing Stool Softeners or Laxatives and you attribute the purchase to your kind, harmless Mom because, after all, “she is getting on in her years and ….”

You know You Are a Crohnie when you tell someone you have “Crohn’s Disease” and they ask if it is contagious.

You know You Are a Crohnie when you tell someone you have “Crohn’s Disease” and they ask: “Is that “the Bathroom Disease?”

You know You Are a Crohnie when you actually understand your Health Insurance Policy.

You know You Are a Crohnie when your mail is mostly comprised of Medical Bills, Explanation of Benefits (“EOBs”) from your Health Insurer and Dunning Notices regarding said Medical Bills.

You know You Are a Crohnie when you hand out Holiday Gifts to the Office Staffs of your various Doctors for all the special treatment they bestow upon you year-after-year.

You know You Are a Crohnie when you prefer certain flavors of Barium over others.

You know You Are a Crohnie when during a Crohn’s flare-up your Joints, Fingers and Toes feel like Voodoo Dolls randomly pricked by painful needles controlled by your arch rival from high school.

You know You Are a Crohnie when you sometimes get gas so powerful it feels like your butt is being lifted off the toilet bowl when you release it.

You know You Are a Crohnie when you know to shave both arms before being admitted to the hospital for the inevitable intravenous lines.

You know you are a Crohnie when you’ve learned to “embrace the suck” of these very challenging chronic illnesses & can laugh about it all.

You know you are a Crohnie when you finally understand that sometimes the Medical Treatment is temporarily worse than the Disease.

You know you are a Crohnie when you truly appreciate the interest, care and concern of friends and loved ones.

You know you are a Crohnie when you understand the vital importance of the support of friends and family.

You know you are a Crohnie when you realize that only your body is affected by the Disease and not your mind or your ability to laugh.

Finally, You know you are a Crohnie or that You love a Crohnie if you’ve read this far and for that, I am gratefulThank you.

by

Michael A. Weiss

Copyright © 2011 All Rights Reserved

 

You know you are a “Crohnie” when …..

As a moving homage to Redneck Comedian Jeff Foxworthy and to Crohn’s Disease patients around the world: “You know you are a Crohnie when….

You set the dinner table with a knife & fork but all you’re “eating” is “Ensure.”

All you own is Black underwear.

The glove compartment AND the trunk of your car has Imodium in it.

You are less embarrassed buying Enemas at the Pharmacy than Condoms.

You look forward to hospitalizations because there you can fart with impunity.

During the Holiday Season, people get you Gift Certificates to your favorite Pharmacy.

You must own an industrial strength “Snake” because no Plunger can free your Home Toilet of the occasional large “log.”

You are watching TV with your Mom and both of you have your own respective Air Freshener Sprays.

Said Air Freshener Sprays are BOTH aimed at YOU, ready to spray, “with the safety off.”

What is a Crohnie?

A Crohnie is a person with Crohn’s Disease.  However, given the similarities in the hassles, challenges, health insurance codes and the often excruciating pain associated with Ulcerative Colitis (“UC”), Irritable Bowel Syndrome (“IBS”), Colitis and the “catch-all” Inflammatory Bowel Disease (“IBD”), Crohnies view UCers, IBS, IBD and Colitis folks as much respected Brethren.  To the Crohnie, each is like a “Brother from another Mother” and therefore the term “Crohnie” includes them.

 What is Crohn’s Disease?

Crohn’s disease is a type of inflammatory bowel disease (i.e., the digestive tract) that affects approximately 700,000 Americans.  It is a broad spectrum disease such that different patients can have completely different experiences in terms of degree of pain, need for hospitalization, the foods which trigger flare-ups, effective medications or other treatments, etc.  For me, at the age of Forty-Eight (48), it has included Two Hundred Plus (200+) hospitalizations and approximately Fifteen (15) to Twenty (20) surgeries.  But for one of my close relatives similarly diagnosed, it has been no more than a minor inconvenience with no hospital visits and no surgeries.   If only my family had money and it was distributed so disproportionately….

It is an incurable auto-immune disease whose most successful treatments suppress patients’ immune systems and thus leaves them vulnerable to numerous other conditions.  It’s like going on a blind date and instantly realizing how un-attracted you are to your date but then you also discover he’s a selfish, ill-mannered ego maniac.  It is a Lose-Lose situation.  The auto-immune component often causes Crohn’s patients to have exponentially longer “healing times” in response to common infections and it can cause abnormally more intense, debilitating or merely longer-lasting responses to minor health issues such as seasonal allergies.  Accordingly, Prostatitis for me may last several weeks while my buddies simply take prescribed antibiotics and start urinating full-stream in no time.

Crohn’s disease can affect any area of the GI tract, i.e., from the mouth to the anus, and the swelling extends deep into the lining of the affected area.  This causes a “narrowing” of the necessary passageway for food, gas and stool. As a result, the swelling can cause severe pain and can make the intestines empty frequently, resulting in diarrhea; or not at all, when the body’s natural process of peristalsis forces downward “movement” inside the intestine and then severe child labor pain-like feelings can set in along with the risk of perforation of the intestine. This severe child labor-like pain and possible perforation of the intestine could be indicative of a life-threatening situation and then the Crohn’s disease patient must go to a hospital.

Because the symptoms of Crohn’s disease are similar to other intestinal disorders, such as IBS and UC, it can be difficult to diagnose.  Unlike UC and IBS, however, Crohn’s disease can involve all layers of the intestine, such that normal healthy bowel can be found between sections of diseased bowel.  These are sometimes referred to as “Skip Areas.” In addition to the fact that Crohn’s disease frequently recurs, and in some cases can also be quite aggressive, Skip Areas are one of the primary reasons why operating to remove diseased portions of bowel is very difficult, and unless presented with emergent circumstances, not a preferred option.  All that said, it makes you really appreciate a normal bowel movement.  Is that what they meant when they said, “Don’t forget to stop and smell the roses?”

Treatment for Crohn’s Disease

Treatment may include drugs, nutrition supplements, surgery, or a combination of these options. There is also a rise in the successful use of organic foods and homeopathic supplements to combat and/or decrease the number and frequency of Crohn’s flare-ups but these pioneering efforts have not been proven scientifically safe and effective and they tend to be extreme and difficult to implement within a normal lifestyle without actually living INSIDE of a Whole Foods Market.  In any event, the goals of treatment are to control inflammation, correct nutritional deficiencies, and relieve symptoms like severe abdominal pain, diarrhea and surgical complications, and to also treat side effects from the various forms of successful Crohn’s treatments.  So, the objective of successful Crohn’s disease Treatments is to treat the serious and frequently debilitating side effects of the fabulous aforementioned successful Crohn’s treatments.  Did Abbott and Costello invent Crohn’s disease?

A stark example of this Abbott and Costello effect of the different successful Crohn’s disease treatments is what I am presently living through in that my Crohn’s disease was successfully treated for a few years (i.e., I experienced very few flare-ups) with what is referred to as an Anti-TNF Agent Drug (namely, “Humira”) but then I started to develop recurrent Pneumonia and other respiratory problems which were so serious that they required several hospitalizations.  Eventually I underwent lung surgery for the doctors to obtain lung biopsies and then I was diagnosed with “Bronchiolitis Obliterans Organizing Pneumonia” (a/k/a “BOOP”), a rare and potentially lethal Lung Condition.  (When I first heard the diagnosis I thought they had me confused with a dinosaur character from “The Flintstones”!) The “textbook treatment” for BOOP was one (1) year of a very high daily dosage of Prednisone (i.e., 60 MGs) eventually tapered down appropriately over said year.  However, after three (3) months or so, and about 45 extra pounds and one almost psychotic disposition, it was clear my body did not respond as was hoped to the massive amounts of Prednisone so I underwent a form of Chemotherapy with the drug “Cytoxan.” After three (3) monthly infusions of Cytoxan, my lungs apparently significantly improved (although it is unclear if the BOOP will be chronic and therefore come back in the future) but now my Crohn’s disease seems to have been aggravated by the Chemotherapy.  To that end, I am seeking treatment for such severe abdominal pain that I cannot eat solid foods without the subsequent digestive process literally bringing me to my knees crying from the pain.  I live on Lollipops and Liquids.

Given the current state of Crohn’s disease research, treatment for it can help control the disease by lowering the number of times a person experiences a recurrence or flare-up, but there is no cure. Some people have long periods of remission, sometimes even years, when they are free of symptoms. However, the disease usually recurs at various times over a person’s lifetime and predicting when a remission may occur or when symptoms will return is not possible.

Sometimes this frustrating research reality sounds to me like someone was given a great deal of Research Grant Money and after an extensive three (3) year study, they concluded: “We think the Butler did it, but then again, it could be Colonel Mustard, in the Kitchen, with the Fireplace Poker. We need more time and then we’ll get back to you.”  In all seriousness, Crohn’s disease can impact a person in so many ways including physically, medically, mentally, emotionally, professionally, financially and socially.  I kid the Researchers but I sincerely appreciate their efforts and dedication and I pray for their success.

**Much of the above medical information regarding Crohn’s disease has been obtained from the National Digestive Diseases Information Clearinghouse. The sarcastic commentary is all mine.

You know you are a Crohnie when….

You bring your own pillow to the Hospital.

You experience euphoria at a rock concert after silently passing potent gas, estimating its invisible travel time into the different seating sections, and then merely by facial expressions, seeing a section of people affected, one by one.

You can discern between different Air Freshener Sprays to obtain the most powerful one.

You become an expert of the potency of the different brands and scents of Air Fresheners.

Your abdomen sometimes feels like you’ve been trapped underneath an earthquake-ravaged building and all of the weight is on your torso.

No matter how many times you tell people that you are not feeling well or that you are going through a Crohn’s flare-up they always respond, “But you look great!”

You run into an old friend while purchasing Stool Softeners or Laxatives and you attribute the purchase to your kind, harmless Mom because, after all, “she is getting on in her years and ….”

You tell someone you have “Crohn’s Disease” and they ask if it is contagious.

You tell someone you have “Crohn’s Disease” and they ask, “Is that ‘the Bathroom Disease?’”

You actually understand your Health Insurance policy.

Your mail is mostly comprised of Medical Bills, Explanation of Benefits (“EOBs”) forms from your Health Insurer and Dunning Notices regarding said Medical Bills.

You hand out Holiday Gifts to the Office Staffs of your various doctors for simply doing their jobs so you are in their good graces going forward.

You prefer certain flavors of Barium over others.

During a Flare-up, your joints, fingers and toes feel like Voodoo Dolls randomly pricked by a painful needle controlled by your main nemesis from high school or summer camp.

You sometimes get gas that’s so powerful it literally starts to lift your butt off the toilet bowl when you expel it.

You know to shave both arms for the intravenous lines before being admitted to the hospital.

You’ve taken Prednisone and have not been committed to a mental institution.

You’ve taken Prednisone and at one time or another have been told by friends or loved ones that you need to be committed to a mental institution.

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How to be a Sane & Healthy Hospital Patient

The “Hospital Patient Experience” is challenging to a Patient from a variety of perspectives including physical, mental, emotional and financial.  To that end, this Video is a succinct explanation of How-To Survive it and How-to also prosper as a Healthy, and thus, successful Hospital Patient.  It is based on my 200+ hospitalizations due to my 25+ year battle with an incurable chronic illness.

The Video is also demonstrative of the practical content contained in my Book, “Confessions of a Professional Hospital Patient,” which is available for sale at all major e-taliers.

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Chronic Pain Soliloquy

The Pain you are expected to endure with many chronic illnesses outside of a hospital would seem inhumane to a healthy person. For the uninitiated, that’s like planning to relax on Sunday night and getting lost in watching “Kourtney and Kim take New York” but then all of a sudden Kris Humphries appears on the screen.  Friends look on as you double-over to bear down and “make yourself small” as that somehow helps in staving off sheer agony (and it simultaneously makes it difficult to see Kris Humphries constantly look like he thinks someone farted on the show yet he can’t quite figure out whom) or you are overheard writhing in pain from the closed bathroom door, but there’s nothing they can do.  Taking you to a hospital is pointless because some chronic illnesses routinely cause this type of frightening pain on a daily or hourly basis and as long as you are not in jeopardy of dying, our healthcare system steers such a patient to a “Pain Management” Doctor.

Escaping from Pain with Dreams

What are you then to do when even a doctor trained in treating pain can’t alleviate the debilitating effects of these unexpected pangs of gut-wrenching debilitating events of suffering?  (Insert your own Kris Humphries metaphor here but “moving to Minnesota” is not a bad one.)  I try to sleep through the bouts of the most debilitating pain episodes hoping the world of REM sleep and its resulting colorful dreams will take me out of reality and into a calm, pain-free place.  But after just so many dreams of being the only one to show up naked to school or realizing at the end of a semester that I forgot to drop a class and now must cram an entire year’s studies into one night, the pain becomes so pervasive that the “Director” of my dreams actually incorporates my pain into the storyline.  For example, it is not uncommon for me to suddenly wake up screaming and kicking to get off of a hospital gurney on the way to the operating room to have my stomach cut open for the 15th time all the while lying still in my bed.  It sounds a bit creative to mix the world of Dreams with the reality of pain but it’s actually sadistic and a symptom of Post-Traumatic Stress Disorder.  That or my Dream “Director” is trying way too hard to win an Oscar.  You’d know exactly the feeling I’m describing if you tried to sit through Martin Scorsese’s 2002 film, “Gangs of New York” or his 2004 effort, “Aviator.”

 What does the Pain feel like?

People always ask, “What does it feel like?” While doctors order you to “rate the pain on a scale of 1 to 10.”  To the caring people I answer: “Think about the pain of child birth during the most intense moments of Labor except remove the expectation of a beautiful baby being the reward for coping and conquering the pain and replace it with a fear that the pain may never end and that there’s no consolation prize for being tough as nails.”  As for Doctors, they mean well by seeking to devise some type of “Scale of Pain Relativity” because then they can most effectively treat your pain and possibly even use your experiences to help other patients with your same chronic illness.  Accordingly, you tell your physician of a morning pain of “4,” an afternoon “7” and an evening “9” but do these seemingly “universal” ratings cross over into all chronic illness?  For example, is a Bone Cancer “6” Pain Rating the same as a Rheumatoid Arthritis “6” Pain Rating or is it more aligned with a Crohn’s Disease “10”?

Universal Ratings for Pain and their Ramifications

Some pharmaceutical companies follow these Pain Scales and create narcotic Pain Medications specifically for certain diseases as if the intensity of “Pain” for any one disease feels differently to a patient than another.  Health Insurers follow their lead in terms of coverage and reimbursement such that if a Pain Medication created for a Cancer Patent helps one with Crohn’s Disease, the Insurance Company will not cover it being dispensed for Crohn’s Disease.  In some states, doctors might also be prohibited from such “off-label” prescribing practices.  (I experienced this a few years ago with the pain-killing drug, Actiq.)  Just as disconcerting is the subjectivity and individualized nature of pain which always makes me think of the futile attempts by Internet Dating Sites to create a Scale or Rating System for “Attractiveness.”  But is a woman who is a “10” in Iowa equal to one who is a “6” in New York or does access to, or importance of, style, have a modifying effect on this proposed  system of “Good-Looking-Ness”?  Moreover, my “9” might be your “7” and vice-versa.  There are just some things in life which cannot be quantified.

Lest we not forget that when you seek unemployment benefits but suffer from a chronic illness and the pain affects your work availability, you will be denied those Unemployment Benefits.  Yet, when you suffer from so much chronic pain that it is impossible to hold down a job, especially one where you must show up, interact and report to others, you are also often denied Disability Benefits or you must pay an attorney to sue for them on your behalf.  In such scenarios, you are deemed too sick to work and too healthy to be disabled.  Huh?  That’s what chronic illness and pain does to your life.  They cause enough medical difficulties so that you can’t plan to work or have a meritocracy-based professional career but you can still watch “Kourtney and Kim take New York.”

Summary

Thanks to Pain Management Doctors, people who struggle with severe and chronic pain can aspire to live some type of desired lifestyle but in order to do so they must have a sense of humor about it all as real serious pain has no consistent side effect-free solution.  However, “Pain,” as a problem by itself, deserves more respect as a debilitating cause of poor or unreliable health.  Just because degrees of Pain can’t be standardized doesn’t mean they aren’t’ by themselves “paralyzing.”

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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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Doctors Quashing Patient Freedom of Speech

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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Nurses – The Most Consistently Competent & Kind Medical Professionals

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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