Category Archives: Living w/ Chronic Illness day-to-day

Interview w/ Mental Health Therapists who specialize in treating Chronic Illness – Part 1

Posted on November 7, 2012 | 1 Comment

This is the first in a Web Healthcare Interview Series which focuses on the experiences of diverse individuals and medical professionals either suffering from, or treating, chronic illness, managing chronic illness and/or navigating the United States Healthcare System.

The objective of the Interview Series is two-fold; namely; to provide a well-rounded perspective on Healthcare so that people with chronic illnesses can best understand how to maximize the productivity of their lives; and to provide the impetus for more effective healthcare reform.

In this 2012 Interview, which is Part 1 of a 2-Part interview with Steph Horgan, LCSW and Tiffany Taft, PsyD, of Oak Park Behavioral Medicine located just outside Chicago, Illinois, I had the privilege of discussing the merits of psychological counseling with two (2) mental health practitioners who dedicate their mental health practice to treating patients with a wide variety of chronic illnesses.  Their respective specific career choices came after each was diagnosed with the chronic, incurable, autoimmune illness, Crohn’s Disease.

Part 2 will be posted in approximately 7-10 days.

Copyright 2012 Michael A. Weiss All Rights Reserved

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Posted in Chronic Illness, Coping Strategies, Coping with Crohns, Crohn's, Crohn's Disease, Living w/ Chronic Illness day-to-day, Managing Chronic Illness, Mental Aspects of Chronic Illness, Mental Health, Psychological Counseling, Support Team, The Healthcare Interview, The Medical Minute, Therapy

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Music is Good Medicine for Chronic Illness

Posted on October 18, 2012 | 1 Comment

“Patients like us, [Baby] we were Born to Run…to the Bathroom!”

@TravisSMcClain – Crohn’s Disease patient & Twitter Pal 

Saying living with a chronic illness like Crohn’s Disease can be difficult is as mendacious as many of the 2012 Presidential political claims.  In that regard, I woke up this morning with intermittent excruciating joint pains which alternated from my wrist to finger to shoulder, finally settling, in of all places, my left heel.  I felt like a Senator John Edwards Voodoo Doll being pricked by former Vice President Dick Cheney.  I was also battling extreme shortness of breath due to some “inflammatory” lung condition which has hospitalized me many times and even forced doctors to once put me on Chemotherapy for a few months.  That sounds rather intense but Crohn’s and chronic illness have caused many strange and serious medical conditions for me over the past 30 years.  But today I was supposed to hear back from a Durable Medical Equipment (“DME”) company about purchasing a Nebulizer so that I could have “breathing treatments” at home as per my compassionate Pulmonologist and thus could stay as far away from hospitals as possible.  Call me crazy but expecting that Nebulizer created an almost Christmas-like atmosphere in this Jewish “Household.”

The Nebulizer

The outstanding issue and reason for the DME callback was the amount of reimbursement from my health insurer because I’m broke and I knew I’d already hit my 2012 out-of-network benefits deductible of $7,500.00 so it should have cost me very little out-of-pocket.  Naturally, a polite woman from said DME company called me just as I had comfortably arranged my painful  body parts on my couch, to tell me, my insurance company told her, I had not reached my 2012 out-of-network benefits deductible, so the DME folks required a credit card.  Before capitulating to her, the kind DME woman gave me the very useful health insurer “reference number” so I could follow up with the brain surgeons who handle customer service at my health insurer whose name rhymes with “Moo Boss.”

I was exasperated at the level of incompetence of the 1st-level customer service people at my health insurer, and I was desperate, so I borrowed a credit card from my Mom, who isn’t exactly on “Easy Street” at 77 years of age having to use most of her bare bones “golden years” “nest egg” to care for her 49 year-old disabled son.  Because of Crohn’s Disease, that disabled son is me and I’ve been denied Social Security Disability twice and now have an attorney who is handling the Appeal but he has told me I must wait another 12-14 months for a Court Date for said Appeal.  Money is not flowing in this “Household,” so the Christmas-like atmosphere faded fast, once credit card reality set in.

Dealing with Health Insurer Moo Boss

As soon as I finished giving the DME woman my billing and mailing information, I called my health insurer and quizzed the Moo Boss customer service person about my 2012 out-of-network benefits deducible and even gave her the aforementioned DME reference number.  This Moo Boss customer service person was so confused by the meticulous details that she got nervous and tossed me up to her supervisor.  Moo Boss supervisor person confirmed my belief about having already met said deductible and promised to call back the DME company so that my Mom’s credit card would not be charged.  I waiting 10 minutes and called myself, just to make sure.  Glad I did because the DME company was getting ready to charge my Mom’s credit card as Mr. Moo Boss evidently has poor communication skills.  More specifically, there was a “failure to communicate” and some inertia was required to reverse the status-quo, as it always is.  I was thankfully able to do that and the Nebulizer is on its way and I will be balanced-billed for what Moo Boss doesn’t pay.  Granted, my blood pressure probably rose with each phone call but in a strange way that seemed to power me through the pain of having to move off the couch to get a pen and paper to jot everything down to “protect myself” from further Moo Boss failures in communicating.

Social Security & Public Assistance

Before I could even think about enjoying my breakfast bowl of Fruit Loops and soy milk, my Social Security Disability attorney then called me to answer an SOS email I had sent him when I got frustrated the other day trying to apply online for “Public Assistance” as I have no means of paying for ANYTHING as I wait the 12-14 months until I hopefully get declared “Disabled” and start receiving Social Security Disability benefits (along with a separate check dating back to when I first became disabled.)  You see, being trained as an attorney and being detail-oriented, I couldn’t complete the online Public Assistance application because it was asking for the financial income and assets of my “Household.” If the “Household” definition included my Mom, I would be denied ALL Public Assistance benefits because even her meager monthly Social Security benefits would catapult us out of Mr. Mitt Romney’s “47% of Americans” who are apparently mooching off the government when they should be “movin’ on up, to the east side, to that deluxe apartment, in the sky….”

My lovely Mom

Seriously, I thought it was unfair to be required to include my widowed Mom’s monthly income in assessing MY need for Public Assistance because we are separate adults and it is MY Crohn’s Disease which is disabling ME.  In any event, because she is my Mom and a compassionate and generous person, her monthly Social Security checks are already being eaten up when she pays for my monthly prescription drugs, frequent hospitalizations and unpredictable doctor visits.  She is doing all she can but that helps me merely SURVIVE and her much appreciated sacrifice comes at the harsh cost of compromising her own quality of life.

It makes me sad to think of our situation because in addition to being my Mom’s adult dependent due to my medical disability, the overall result is that we are also BOTH completely financially handicapped.  Therefore, I think it is unjust to include her financials in assessing my need for assistance (and thus counted toward the determination of my “Household”) when she has no legal obligation to support me but can’t imagine me living in a cardboard box with no private bathroom!  In summary, I don’t want to misrepresent our situation or run afoul of any laws pertaining to how these Public Assistance eligibility tests are determined.  Accordingly, I was hoping my attorney could clarify things so that I could quickly apply for even Food Stamps given that I have absolutely no income and only exorbitant medical bills.

My Smart Attorney

My attorney is a smart, experienced and compassionate man but he told me that as long as my Mom helped me with “extravagant” things such as food, shelter and the Sunday night opportunity to entertain myself watching “The Good Wife” on her television, she was part of my “Household” and I thus would not qualify for ANY Public Assistance.  I countered with the logic that this government policy made no sense because, as a result, my disability would be affecting, and possibly ruining, two lives, instead of one.  He told me I was crazy to think that logic would be persuasive with bureaucrats. :)

I asked him what to do for sustenance and minimum amounts of money to pay for my prescription drugs and he told me I’d have to wait 12-14 months for any government assistance.  We bantered back and forth for a few minutes sounding like an old “Abbot and Costello” routine, with me making clear my frustration was with the “system” and not with him.  He wished me good health and good luck until the next time we spoke.  When I hung up the phone, it hit me that he could not help me with my immediate need to qualify for some type of Public Assistance.  I realized that I’d have to use my legal talents, when I am healthy enough to do so, to find some case law or unique interpretation regarding the definition of a “Household” within the context of applying for Public Assistance in my state. I will do that, but with impending Cataract Surgery next Thursday and me doing everything I can to stay out of the hospital for my breathing difficulties and severe joint pain, I don’t know when that will be.  Said Christmas atmosphere was now, all but gone.

The Boss wakes me up

Before I tried to organize my painful body parts to move off the couch, as one, toward the kitchen to my waiting “Breakfast of Champions,” I actually felt the weight of the frustration and disappointment I had experienced, all, by 10:00 AM.  At least I had the Marines beat by experiencing more disappointment before breakfast than most people go through in a week!   I wanted to cry but that train left the station years ago when liquid tears actually came out of my eyes when I got so sad.  I’ve just become too good at dealing with adversity and tears don’t come easy.  So with nothing else to do but head toward the kitchen and possibly more disappointment if my Mom had purchased the “store brand” of Fruit Loops, I turned on the television.  For some reason, getting immersed in someone else’s fictitious life helps me escape mine and I imagine that’s why I turned on the television at that precise moment. Evidently the channels had been surfed furiously before my Mom shut the television last night (i.e., she fell asleep on the remote control and caused many buttons to be depressed simultaneously) and when the TV turned on,  the “Palladia” Music Channel was playing.  I was about to channel surf myself until I saw, what I thought I had heard, namely, Bruce Springsteen and The E Street Band playing Live before a crowd in New York City.  It was the 30th Anniversary of “Born to Run” and if my memory was accurate, I remembered I had attended that show with my best friend.

Mighty Max Weinberg keeps me up!

The song “Land of Hope and Dreams” was playing and my Mom was simultaneously calling me into the kitchen to eat breakfast but watching Bruce Springsteen was mesmerizing and trying to keep pace with the Mighty Max Weinberg on drums proved impossible.  Yet, the task had “my body smiling” and I was quickly forgetting about Moo Boss and the Public Assistance definition of a “Household” as I tried to anticipate the next song.  It was “American Skin” [41 Shots] and I love that song so I just stayed on the couch and let the music soothe my soul.  It sounds like a cliche but that’s exactly what The E Street Band did to me this morning.  I would have never thought that watching a cool and beautifully sounding concert at 10:00 AM would suffocate a BAD Crohn’s day but that’s what music can do.  The great Brian Wilson of Beach Boy fame has been right all along, “Add Some Music to Your Day.”  Then I heard the beginnings of “Backstreets” and the joint pain seemed to go away as I tried to again keep pace with Max.  Then “Darkness on the Edge of Town” affirmed what I was doing, exactly how I was doing it.   It was like the Band was talking to me and making me feel like “everything’s gonna be all right” just “have a little faith.”  My mind was controlling my body and I started to feel so much better that I even enjoyed “Lost in the Flood.”

Unraveling the effects of years of Chronic Illness through Music

I recorded the rest of the concert so that I could eat my breakfast while I watched.  I was generally familiar with the Set List so I fast forwarded to “Jungleland” and I was so intensely thinking about the lyrics that I had created a pleasant diversion and was so far away from customer service incompetency.  “Light of Day” was next and after “jammin’ with the Band” to finish the song, I literally felt as if I had enjoyed myself too much so I stopped the recording and turned off the television and tried to go back to the couch to eagerly await my Nebulizer and upcoming Cataract surgery.  It’s amazing how years of battling chronic illness can condition the mind to apportion and enjoy only a certain amount of joy and happiness because it almost trains the patient to expect bad news or painful feelings just around the corner.  But this morning I let music overtake me and I just went with the flow and tried to carry my new sense of calm with me as I took on the rest of the day.

Let’s just go “Racin’ in the Streets“

Unfortunately, my enlightenment was interrupted by confirmation calls from the eye surgeon and then by dunning calls from medical creditors but I would not lose sight of the fact that I had learned something significant today.  Music, just like narcotic painkillers, can soothe pain and really take you away from your problems; albeit temporarily. But Music is a much healthier “medical treatment,” it’s always available, it comes in so many different forms and it’s not addictive.  After a few more mundane frustrations of the day, I took my own advice and made it down to my computer and listened to my favorite song by Bruce Springsteen and The E Street Band, “Racin’ in the Streets.” The Live Extended Version is a beautiful juxtaposition of Professor Roy Bittan’s magical fingers on the piano and Mighty Max Weinberg’s “feel” for pulsating and intensifying the mood, when need be, but always in synch with the rest of the Band, and especially with the maestro piano player, Roy Bittan.

Thank you – Bruce Springsteen and The E Street Band

I’ll never forget today’s “musical medical illumination” because the way I feel when I listen to or watch members of The E Street Band use their respective individual musical talents to create this sound is simply Good Medicine.

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Posted in Auto-Immune Disease, Chronic Illness, Chronic Pain, Coping Strategies, Coping with Crohns, Crohn's, Crohn's Disease, Crohn's Disease Mainstream Awareness, Crohnie, Disability, Health Insurance, Health Insurers, Inspiration, Living w/ Chronic Illness day-to-day, Managing Chronic Illness, Managing Chronic Pain, Music as Medicine

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eBook – “Confessions of a Professional Hospital Patient”

Posted on June 1, 2012 | Leave a comment

Personal Candor of my Medical Book makes it Funny & more Interesting

Up until only a few years ago, when people began using “Health Care Social Media” (“HCSM”) to help one another with their shared medical maladies, people weren’t publicly “Candid” about their medical conditions for fear of obvious or subtle retribution by their employers or because of insecurities regarding the possible or probable perceptions of their significant Other. Thankfully, the “anonymous intimacy” of Virtual Patient Communities & Social Health Networks, like Crohnology.com, and other patient-preferred HCSM “platforms” has changed that to the point where patients often reveal more important medical details online than they do in the sterile and confidential confines of a Doctor’s office. This seems counter-intuitive but being a patient myself I can attest to this phenomenon.  I suspect it is due to the more relaxed “environment” of chatting online while sipping a relaxing glass of wine in comfortable clothes as opposed to coming in from the cold and immediately having to get naked and then change into Patient Gowns, the design of which hasn’t changed since Thomas Jefferson had his first prostate exam.

By the same token, there have been many Healthcare Books written which detail how to Cope with, or Manage, Chronic Illness, but few of them are based on 100% “Real,” “personal” or Candid interactions for these very same, understandable, retribution and insecurity reasons.  However, I never bought into these fears because when you have a chronic illness it does not define you; it merely becomes another of your character traits, just like being funny, attractive or hard-working.  Therefore, I decided in 2001 to write about the Real account of my trials and tribulations with Crohn’s Disease so that others with a similarly debilitating and painful Chronic Illness could relate to my struggles, both in and out of the hospital.  I also thought that a book intending to be helpful to others about these types of particularly dull and niche subject matters should exhibit “personality” and be funny and inspiring so that readers are more likely to remember how, for example, I handled things, both successfully and unsuccessfully.  Then readers are more likely to truly learn from my experiences.  This was the impetus for me writing the book, “Confessions of a Professional Hospital Patient,” which was released in eBook format only a few days ago.  The eBook Selling Price is $3.47.  (The eBook has also been configured to work with Barnes & Noble’s “Nook” device.)

Authenticity is the Ultimate Teaching Tool

Last week, when the “Confessions of a Professional Hospital Patient” eBook came out, I was trying to figure out what has made the Book so interesting and entertaining to others and an “evergreen” seller since 2001.  Well, the other night, while participating in a mental health social media TweetChat, I commented that good Blogs are written by people who make entries that are thought-inspired as opposed to obligatory in nature.  For example, people who feel they must blog everyday will eventually lose readers because I think we find Blogs interesting due to how the bloggers describe their handling of anger, frustration, anxiety, fear and other emotions which we all experience.  As a result, while Blog entries motivated by these types of common emotions may not be published every day or even every few days, when they are published, their “authenticity” produces interesting content.

During this TweetChat, when I was concentrating on reading and writing about the Mental Health Topics introduced by the Moderator, I realized that I didn’t hold anything back in “Confessions of a Professional Hospital Patient” because “authenticity” is what I was aiming for since I wanted people to have no doubts as to my veracity so they could relax and absorb the material.  It’s like when I taught a class on “Negotiating in the Entertainment Industry” to a group of night students already working in the entertainment industry who were also enrolled in this special “Media MBA Program” partially funded by their respective employers.  The first night of class I told the 50 or so students that unless I felt the following rather generous grade policy was being abused, everyone would be getting a semester grade no less than “B” because my goal was to TEACH them about “Negotiating in the Entertainment Industry” and I thought the most effective way to do that was by having them not worry about grades so they could simply sit back, listen and LEARN.   Without realizing it at the time, I think I used the same approach in my Book and it seems to have worked.

Mainstream Reviewers – “laugh out loud funny” & “wonderfully inspiring”

When “Confessions of a Professional Hospital Patient” first came out in July, 2001, I was shocked at how well it was received by the mainstream Press since it was about the niche and seemingly “dry” subject matters of Crohn’s Disease and Chronic Illness.  But readers/reviewers of the Book consistently commented that it was “laugh out loud funny” and “wonderfully inspiring.”  That made me feel fantastic because if THEY liked it, I knew my fellow “Crohnies” and Chronic Illness comrades would learn a great deal from my experiences.  In that regard, I have received from these chronically ill folks (and from their families) at least one communication a week since 2001 thanking me for helping them, inspiring them or in many cases, for changing their lives.  To continue to receive notices like that is an honor I can’t even describe other than to say they make having written the Book an incredibly rewarding experience, of which I will always be proud.

As these mainstream reviews were published, I somehow got on NBC’s “Today Show” and my Book was seriously “taking off.”  Publishing public relations agencies then began calling me me about how they could get me on television shows like “Oprah” and “Larry King Live.” I eventually gave in to one of them so I could at least seek those rather lofty and once-in-a-lifetime goals.  Long story short, the first thing I did was what they called a “Radio Satellite Tour” during which I gave phone interviews about the Book to the leading morning drive-time radio shows in key cities across the United States.  We started in the East Coast at 7:00 AM EST and I sat by my phone until 1:00 PM EST as we gradually worked our way across the country to morning drive-time radio stations in California.  Some radio interviews were also taped for broadcast later that week.  However, it didn’t much matter in the end as the radio interviews all took place on Monday, September 10, 2001, one day before the world changed and “Confessions of a Professional Hospital Patient” would become the least of anyone’s pressing morning radio topics to discuss.  All in all, it was a rather humbling experience to go from possibly appearing on “Oprah” and CNN’s “Larry King” to returning to being a full-time Entertainment Attorney, in the span of 24 hours.  While I was initially disappointed in the opportunities I lost, I quickly “turned the page” (pardon the pun) and focused on nothing but the people who tragically perished in the events of 9/11 and the brave men and women in the Armed Forces who would be risking their lives to defend my freedoms for years to come.

“Your Mom CAN’T read my Book – it’s too Personal!!!”

A funny recollection I have of marketing the Book and appearing on a variety of National and Regional Network and Cable Television Shows had to do with my girlfriend at the time.  I hadn’t yet met her Mom but meant to as soon as I had a free moment.  That gives me the creeps just writing such an arrogant excuse but I had made plans to meet her Mom several times but unfortunately had to cancel them as I never expected my Book to get the amount of widespread Press Coverage it received and I had to take advantage of it.  Thankfully, my girlfriend was very understanding and supportive but she was also very excited for us to meet.  In fact, she was so enthusiastic about it that she had her Mom purchase my Book in advance of our 1st scheduled dinner meeting.  She also told me this as we drove to her Mom’s house and I got so embarrassed because all I could think about was her Mom knowing all about my battles with Chronic Illness and Crohn’s Disease. Worse, she would learn about all my embarrassing personal details revealed in the Book.  I was squirming in my car just thinking about what would be going on in her Mom’s mind as she met me and probably scrutinized my suitability for her beautiful daughter.  As we got closer, my girlfriend just laughed and said something to the effect of: “It’s so funny that you are paranoid about what MY Mom will think after reading your Book when you’ve already discussed the most intimate details of your life on the “Today Show,” MSNBC and radio stations all across the country.”

I’ve learned over the years that my then-girlfriend’s point that day in my car about her Mom is a major attraction of “Confessions of a Professional Hospital Patient” as it’s really a true and authentic depiction of my life and my funny, sad, poignant, embarrassing, inspiring and frustrating battles with Crohn’s Disease and Chronic Illness.  Damn the torpedoes!

Click here to purchase Paperback - “Confessions of a Professional Hospital Patient”

Click here to purchase eBook - “Confessions of a Professional Hospital Patient”

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Posted in "Confessions of a Professional Hospital Patient", Chronic Illness, Colitis, Coping Strategies, Crohn's, Crohn's Disease, Crohn's Disease Mainstream Awareness, Crohnie, Crohnies, eBook, Empowered Patient, Funny, Health Care Social Media, Health Insurance, Health Insurers, Hospital Patient, Hospital Patient Experience, Hospitalizations, Hospitals, Journey to Correct Medical Diagnosis, Laughing, Listening to Your Body, Living w/ Chronic Illness day-to-day, Managing Chronic Illness, Nurses, Professional Patient, Professional Patient Book

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Impersonalized Medicine for Chronic Illness Patients

Posted on April 14, 2012 | 3 Comments

(This Blog Entry is excerpted from a Chapter in the upcoming eBook, “Chronic Illness: Truths, Tales & Tips” written by Michael A. Weiss)

 Interacting with my Pain Management Doctor

I was moved to write this Blog Entry because of a phone conversation I recently had with my Pain Management Doctor during which I told him I was exceeding my monthly dose of narcotic pain medication and I needed more medication prior to our upcoming appointment in two (2) weeks.  Patients who routinely see Pain Management Doctors can attest to the tremendous anxiety which builds up while making this phone call especially after you’ve committed to taking less narcotics and getting off them completely during recent appointments. That anxiety rises to the level of making you feel like a complete schmuck when you’ve documented this pledge of narcotic abstinence in a Video you posted on the Web which has been viewed by many similar situated patients around the world!  But, as I’ve learned with my case of a chronic illness, you can’t predict the future and lately mine has been a shit storm of one painful major medical catastrophe after another such that I’ve had to postpone my genuine pledge to reduce my monthly intake of narcotic pain medications.

My doctor is very compassionate toward my plight and he doesn’t doubt my veracity regarding these recurring medical tsunamis because I always fax him details of each situation (i.e. specialty doctor names, diagnostic test results, etc.) which could impact the management of my pain.  But during this phone call and within the context of looking out for my best interests, he unintentionally scared me a bit when he explained how repeated patient “violations” of regular monthly amounts of narcotics (i.e., repeatedly calling and asking for more than were prescribed for a given month) will eventually raise red flags with health insurers and soon these bureaucrats might go over his head and make me “defend” my medication requirements. I remarked that the logic in this potential bureaucratic practice of medicine seems to run contrary to the sacrosanct nature of the Doctor-Patient relationship because any red flags should be first noticed by my doctor and thus he or she would speak to me about them and I would have to change my behavior accordingly.  But since my poor genetic makeup, bad luck and auto-immune chronic illness have been causing one painful nightmarish medical problem after another, shouldn’t the documentation approved by my health insurer of the NUMEROUS specialty doctor visits and diagnostic test results make my absolutely necessary pain medication request beyond scrutiny by this same health insurer?

My doctor assured me that he understood my frustration but this is where he believes the practice of pain management is headed and I need to be mindful of it.  His point was duly noted, we agreed to discuss this matter further during my next appointment and he prescribed a specific amount of medication to adequately treat my pain until our next appointment.  After I thanked him and hung up, I thought of the following question which I should have asked him but I sensed he was busy and needed to accommodate my request and then move on to another of his daily responsibilities:  “When I saw you on March 1st and your prescribed a certain amount of monthly medication for a painful Crohn’s Disease flare-up I was having, how was I to know that this flare-up would escalate so substantially by March 12th that I had to take more pain medication per day AND around the same time I began experiencing such severe pain in both breasts and nipples from some unrelated but serious medical problem that taking a shower made my chest feel like a broken-down dart-board and this sometimes added further to my pain and required even more daily pain medication?”

Documenting Complex Medical Problems for Doctors & Insurers

I thought I had “protected” myself from the aforementioned understandable scrutiny when after seeing my NYC gastroenterologist and going for the variety of diagnostic tests he ordered, I faxed every result to my Pain Management Doctor.  Moreover, when one of those diagnostic tests revealed that the “dart-board pain” was likely the result of my body having NO testosterone, I faxed that to him as well.  At this same time, at the bequest of my NYC gastroenterologist I rushed to see an Endocrinologist for the testosterone problem and he sent me for even more tests because my blood levels revealed a startling lack of testosterone. This new “in-network” Endocrinologist was so concerned with my “dart-board” pain that he also prescribed a hormonal drug to help offset that pain.  He also indicated I had to go for additional diagnostic tests to check my Pituitary Gland as a possible source of the problem.  However, within 2 or 3 days of taking this new drug to fix the “dart-board,” my body reacted violently and my already painful Crohn’s Disease flare-up got even worse that being hospitalized was a distinct possibility because I could barely control the pain. As a result, I had to discontinue the medication and I also faxed all of this information to my Pain Management Doctor.

While I am still battling the testosterone problem, my NYC gastroenterologist believes it is due to the massive amounts of Prednisone I had to take last summer to treat a life-threatening lung condition (i.e., “B.O.O.P.”) I contracted from certain Crohn’s Disease medications I had taken for a few years.  However, the four (4) months of taking 60 MGs of Prednisone each day did not ease my B.O.O.P. breathing problems and I had to then endure a four (4) month course of Chemotherapy but I knew all along of the potential short- and long-term problems associated with taking such potent drugs.  Thankfully, my breathing is better due to the Chemo but it has made my Crohn’s Disease much worse, albeit hopefully temporarily, and now I have a painful testosterone problem likely from the Prednisone as a consolation prize for the Prednisone not working on the B.O.O.P!.  Call me crazy, but I couldn’t possibly predict these problems and given that I have substantiated each and every aspect of what I am going through to try and alleviate the pain so that I can finally move forward, I don’t like having to defend or explain why I need more pain medication when there are many days I can’t get out of bed because I am in agony.  I know my Pain Management Doctor will understand once I have the opportunity to remind him of all I am going through but I get worried that health insurers are getting too hands-on and that a cursory review of my primary Crohn’s Disease case will not accurately reflect the pain I must live with on a day-to-day basis.  Given the possibility that the lingering effects of both the aforementioned Chemotherapy and Prednisone may never abate, I am also worried that these complications will never be given their due deference in evaluating the severity of my medical problems.

Living with the Chronic Illness, Crohn’s Disease

In my almost 30 years living with Crohn’s Disease, I have learned that the pain it causes varies depending upon the type of Crohn’s flare-up AND the genetic makeup of each patient.  I am not qualified to comment about genetics other than to say I wound up with “used car”-like genes but from LOVING PARENTS. In that regard and based on how difficult my life has been because of my Crohn’s Disease, I would never have my own child for fear of passing along this often horrific illness.  That’s the bad part about my “inheritance” but the good is that my parents also passed along some great genes which have made me compassionate, tough and resilient so that I can help others who must live with this often pervasive and devastating disease.  They’ve also given me a sense of humor and a whole lot of love. I could not survive without either.

Playing the Health Insurance Game & Working Your Policy

My resiliency and coping abilities notwithstanding, I am beginning to worry about how my increasingly painful and unpredictable Crohn’s Disease flare-ups will be treated by an impersonal healthcare system in which even longstanding doctor-patient relationships are being terminated due to patients being pushed toward unfamiliar in-network doctors who accept lower reimbursement fees from health insurers in exchange for an increase in their volume of patients. Ergo, what was once a relationship-based service industry is now strictly a bottom-line business.  Unless a patient is wealthy, due to financial constraints and the alluring option of seeing their inexpensive in-network doctors, patients can no longer afford to see their familiar physicians who know them best.  This sense of unfamiliarity has a disproportionate negative effect on people who suffer from chronic illnesses and who thus come to rely upon their physicians to maintain some semblance of a quality of life.  In any event, by the time the new in-network doctor is brought up-to-speed, the patient’s employer has likely changed insurance companies to save money and the patient has to choose a new in-network doctor all over again.

I’ve tried to “work my insurance plan” in this in-network manner but my case of Crohn’s Disease is so complex (and now even more so because of the Chemotherapy and Prednisone problems) that I always wind up back with my New York City gastroenterologist who either identifies the problem and/or finds an answer because he sees more Crohn’s patients than most other doctors, he’s a very experienced gastroenterologist and he is also very smart (as not all doctors are smart just like not all lawyers are smart).  That said, my unique case of Crohn’s Disease has cost me so much money over the years because each time I’ve tried to use an in-network gastroenterologist I’ve had a bad or nightmarish result because he or she lacked the expertise, experience or smarts to handle my situation.  More specifically, I went from having MY SPECIFIC CASE OF Crohn’s Disease treated by the NYC doctor to having A CASE OF Crohn’s Disease treated by a local gastroenterologist who could recognize it on an x-ray and could spell it correctly but beyond that, the proscribed treatment never took into consideration my almost 30-year case of Crohn’s which has necessitated over 200 hospitalizations and approximately 20 surgeries.

Another threat to a patient’s choice of physician can occur when the patient’s disease or situation requires such “personalized” care that it raises red flags with health insurers because such treatment is either not within their normal or typical boundaries of care or the treatment required to care for that specific patient is more expensive than the care required for the typical patient suffering from the same ailment (said standards are as determined by the health insurance company). Moreover, that medical treatment solution could be implemented by bureaucrats from the health insurer which will only serve to placate the patient and will not at all address his or her lifestyle, quality of life and it will probably keep that patient in an unfair amount of pain.

Understanding the Severity of Crohn’s Disease

My fear about chronic illness patients receiving impersonal healthcare is because I get the feeling that some doctors, and all health insurers, don’t understand the severity of my Crohn’s Disease and likely the severity of many other chronic illness cases.  This makes me worry about my future because my disease can get even worse.  What am I to do then?  How will it be possible to still get such quality specialized care when I am financially tapped out?  Naturally, these are rhetorical questions but they represent issues which are not unique to me so I find it therapeutic and simultaneously helpful to others to identify them for contemplation by writing Blog Posts like this one.

Bowel Obstruction Pain

Thanks to late night television commercials and general stigmas, many people think Crohn’s Disease is all about diarrhea, bowel control (or lack thereof) and mal-absorption issues. What comes across in those ominous television commercials is fear about losing control and possibly having to defecate in the middle of a business meeting or on romantic date and there is not much mention or imagery of the disabling severe pain caused by the disease.  In my experience, not only is the pain severe but it is also unpredictable and that adds another element to trying to manage it. It is unpredictable in terms of its timing, duration and intensity.  Typical Crohn’s severe pain involves inflammation at any point of the digestive track but predominantly in the intestines.  This swelling of the intestinal walls reduces the diameter of the “pathway” for food and gas to get through the body until eventually the narrowing of the pathway becomes completely occluded and a Bowel Obstruction occurs.  The cramping pain of food and gas trying to nevertheless pass through this intestinal roadblock is VERY painful.  It’s no help that the body’s natural process of peristalsis to move everything down (and out!) the pathway also kicks in and it adds pressure and intensity to that pain.

Experienced doctors and patients have described Bowel Obstruction pain to be similar to that caused by Child-Bearing Labor pain.  If you are lucky, the inflammation of the intestines subsides and you can avoid surgery.  But that can take days or weeks of lying in a hospital on steroids.  It can also become life-threatening if the food and gas threatens to perforate or break through the intestine because then it’s time for emergency surgery. Note:  Since Crohn’s is an autoimmune disease, it can cause or enhance painful inflammation in other parts of the body.  For example, I have had sores on the cornea in my eyes that have hurt as much as Bowel Obstructions. It is a different kind of pain but brutal nonetheless.

Auto-Immune Gas Pain of Crohn’s Disease

In addition to the above typical Crohn’s Disease Obstructional pain-inducing scenarios, I have learned over the years by keeping a daily food/pain diary that Seasonal Allergies (and certain foods) always trigger unique Crohn’s “inflammatory” flare-ups because of the auto-immune component of the disease.   Doctors have never been able to explain this phenomenon to me but if you witnessed it you’d understand why these types of flare-ups are more disabling than any others. I have also noticed that since undergoing Chemotherapy for treatment of the lung condition B.O.O.P., my intestines are much more sensitive and therefore these types of flare-ups are more volatile, frequent and intense.  To that point, it has been surmised by several medical experts that when my body is exposed to any type of allergy it responds by attacking itself due to my auto-immune illness.  The fight my body puts up is with itself and not with the outside agents causing the energy-draining effects of allergies.  It’s as if I have tiny “immune system soldiers” inside me attempting to ward off illness but instead they act more like soldiers from the movie, “The March of the Wooden Soldiers.”  When I need these soldiers the most, they robotically march directly into a brick wall exactly like the Marching Band members in the final scene of the movie, “Animal House.”  Seriously, the “Animal House” movie scene in which the Marching Band members march straight into a concrete wall and continue to bump into one other and cause chaos in the process is how I envision Crohn’s Disease affecting the operative parts of my immune system which should be limber, dynamic, strong and at least pointed in the right direction!

While I may envision allergies attacking my immune system in a rather humorous manner, in reality it is these effects of the auto-immune component of my Crohn’s Disease (and probably also due to having had many surgeries which have left behind scar tissue and a uniquely shaped intestinal tract) which make me cry from bearing down on the pain and feeling so ostracized by the situation.  I caution readers who do not have experience with Crohn’s or other serious illnesses to have an open mind when they read my vivid description of this specific pain and discomfort as even only a few family members have witnessed it due to its completely debilitating, embarrassing and excruciatingly painful manifestation. To start, let’s just say those wooden soldiers inside of me get confused when I’m exposed to allergies and instead of banding together and building up my immune system they do everything but and for some reason related to my Crohn’s Disease the result is an inordinate amount of painful gas quickly building up inside my abdomen.

As this gas builds up inside of me, it stagnates and causes my intestines to become so Grossly Distended that I look like I’m pregnant.  Doctors have never adequately explained this to me but the gas either builds up in other parts of my body or overflows into them from my intestines and I start to look like “The Michelin Man.”  The production of exponentially increasing amounts of gas stretches parts of my insides and causes excruciating pain.  It also comes on suddenly and with seemingly different warning signs each time so I never have been able to anticipate it. During this initial phase I cannot expel gas no matter how hard I try even though that would greatly alleviate the pain.  With each body movement I generate more gas or the gas inside me moves and creates a “gas pocket of pain.” A bed is the only place for me and I often must be physically assisted to get to that bed.  I then pray I fall asleep and dream about watching the air coming out of the “Macy’s Day Parade” Floats.

“I Love Lucy” & the Fury of Gas Pain

These gas pains move fast and furiously inside my body but for 1-3 days I can’t expel the gas no matter how hard I try.  I also become so tired from the combined effects of the allergies and my immune system attacking itself that sleep is all I can do but the painful rumblings inside me make it difficult to fall asleep.  It’s like a form of Broccoli torture where your enemy lets you gorge on the gaseous vegetable but they don’t let you fart for 3 days.  But around Day 3 of this Crohn’s Disease seasonal allergy torture I begin to expel the gas but my body seems to manufacture it faster than I can expel it.  The best way I can describe this seemingly perpetual “gas imbalance” is by suggesting you think of the “I Love Lucy” classic television show with Lucy and Ethel in the “Candy Factory” episode and then imagine those lame immune system wooden soldiers inside me saying to the gas producers: “Speed it up.”

Long story short, each time I expel the gas and release some of the pressure, my rear end hurts in ways I find hard to explain other than it feels like the exhaust from jet propelled engines are being thrust out of my backside.  I want to expel the gas to alleviate the gas pains but I dread the fallout pain in my rear end.  This sounds funny but it happens to me several times a year and without warning.  Around Day 4 expelling the gas becomes easier so the pain above my waist gets better but the gas is still so pressurized coming out of me that my butt hurts as if razor blades were coming out of it.  Every time this type of Crohn’s episode happens I feel like a Leper because I don’t know anyone else who experiences it and I can’t be around anyone while I am going through it.   I feel as if I am not in control of what is going on inside my body and it scares me.  I don’t know why it started and I don’t know when it will end.  Taking narcotic painkillers takes a little edge off the pain but soon every 4 hours turns into every 2 ½  hours and 1 pill becomes 2.   Crohn’s Disease seems to be different for each patient but when I can’t get some doctors to understand the aforementioned gas pain flare-ups how will I ever be able to convince skeptical, bottom-line oriented health insurers of its severity?

Without a Witness, No One would Understand my Pain

If my Mom hadn’t witnessed all of the above, no-one would believe it.  I guess there is a reason why I had to move back home when I began to get so sick a few years ago.  I suspect many people with chronic illnesses go through the same types of complex problems which require treatment that is in excess of the norm or different than the norm but personalized medicine for the chronically ill is going to become less available due to health insurers invoking actuary-like limits to the medical treatment of human beings with real and painful medical problems.  I worry about such a healthcare system in which the treatment of abnormal medical problems could raise a red flag which takes away the doctor’s power to treat the patient he or she knows best and instead places the treatment responsibility in the hands of insurance bureaucrats who intend to ignore complex personal patient histories and decide what is best for that patient based on statistics of normal cases and, of course, on their bottom line.  Healthy people may not feel the effects of this yet but those with chronic illnesses know far too well how it feels to be treated like a number.  Our bottom-line:  It’s hard to live with a chronic illness these days.

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Posted in Auto-Immune Disease, Chronic Illness, Chronic Pain, Crohn's, Crohn's Disease, Crohnie, Crohnies, Health Insurance, Health Insurers, Living w/ Chronic Illness day-to-day, Managing Chronic Illness, Narcotic Pain Medications, Pain Management Doctors, Personalized Medicine

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Chronic Disease – a Teenager’s WISE Perspective

Posted on March 25, 2012 | 1 Comment

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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Posted in Auto-Immune Disease, Bathroom Stigmas & Crohn's Disease, chrones, chrones disease, Chronic Illness, Colitis, Coping Strategies, Crohn's, Crohn's Disease, Crohnie, Crohnies, Dating with Chronic Illness, Dealing with Chronic Illness, IBD, Living w/ Chronic Illness day-to-day, Managing Chronic Illness, Relationships & Chronic Illness

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Chronic Illness & Dependency on Narcotic Pain Medications

Posted on February 7, 2012 | 7 Comments

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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Posted in Chronic Pain, Drug Dependency vs. Addiction, Living w/ Chronic Illness day-to-day, Managing Chronic Illness, Managing Chronic Pain, Narcotic Pain Medications, Pain, Pain Management Doctors

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

Posted on January 9, 2012 | 1 Comment

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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Posted in Assertive Patient, Empowered Patient, Informed Patients, Living w/ Chronic Illness day-to-day, Managing Chronic Illness, Patient Consumers, Patient Technology Tools, Patient Tools

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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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Chemotherapy – My Veins R to Needles what my Penis is to Water – Flaccid!

Posted on September 7, 2011 | Leave a comment

I plan to make these Chemotherapy Blog Entries “Day in the Life” -styled because everything else you can find on the Web or in Textbooks.  I’m always CANDID and in a world where everyone has some sort of agenda, please take comfort that what you read here is TRUE.  “I say what I mean, and I mean what I say.”  My father was big on that saying and I must say that it guides my mouth and life every day. It’s also why living in Los Angeles, California was difficult for me since nearly everyone is so full of crap out there.  That said, however, Santa Monica, CA might be the most beautiful place in the WORLD to live and it’s visions of walking through my old neighborhood on 7th just off Montana Avenue which makes me want to get better so I can do a Victory Lap, get something from Coffee Bean to sit outside there and pretend I am deep in thought while I wait for Jessica Biels, Jennifer Beals, Jennifer Love Hewitt or Halle Berry to walk by.

On a gorgeous California day during the late lunch hour in and around that area which makes up the heart of Santa Monica, you feel as if anything you’ve ever dreamed of can happen at any moment.  That is the beauty of Life and I’m lucky I found such a place.  Now I am hoping I eventually find the right person to share it with and a Dog to help us make memories.  That is the antithesis for how I often feel these days as I know the passage of “hard” time is the best I can hope for.  But the combination of the medication side effects, administrative health care paperwork and absolutely no guarantees of success makes for a life of hopefulness.  That’s why the story I am going to share today bothered me so much as it struck at the very core of my Hope.  That is, my Hope for me and the Hope I have for other people affected by Crohn’s Disease. The annoying part of the story is that I received news of the “rejection” after I was to have routine blood tests and due to numerous needle sticks I had to be stuck six (6) times because my veins have become to needles what my penis has been to water!  FLACCID!!!!

I recently wrote the 1,000 Word Essay (approx. 2 pages) pasted below for the purposes of entering into a Contest for people with Crohn’s Disease and/or IBD.  More specifically, the Contest is called the “IBD ICONS: Living beyond Ulcerative Colitis and Crohn’s Disease.”  The Contest is sponsored by both Janssen Biotech, Inc. (“Janssen”) and the Crohn’s & Colitis Foundation of America (“CCFA”).  I was kindly notified of it a few weeks ago by a friend on Twitter.  They want applicants to write an Essay about how they have accomplished various things in Life despite the obstacles presented by Ulcerative Colitis, Crohn’s Disease and/or Inflammatory Bowel Disease.  The Grand Prize is an all-expense paid trip for two (2) to Las Vegas on December 3-5, 2011.  Mind you, my main purpose in entering was to call attention to all I have accomplished, and hope to accomplish, so that a child or parent with these terrible diseases can DREAM about accomplishing things they thought were now closed off to them.

 Since the website had NO ESSAY SUBMISSION DEADLINE DATE LISTED, I nevertheless checked their main site, “IBD ICONS,” EVERY DAY for the last two (2) weeks of August and for the first few days of September because I had been working so hard on fine-tuning what was initially an 8,000+ word Essay.  However, on or about September 5rd,  via a Click-Thru Link, a Notice was posted that “Finalists will be posted on September 26th” and no additional Essays were being accepted.  It did not even say when the Submission End date was.  As it took me TWO (2) weeks to edit down an 8,000+ Word Essay to the required length of under 1,000 words, naturally, I complained to any email Janssen Biotech names I could find on the site (or at the CCFA but this is CLEARLY a Sweepstakes being run by Janssen Biotech) and in 2-emailed responses from Janssen Biotech Representative “Linda Davis” they were quick to back-pedal that an “End Date” of August 26th was posted on the website (WHEN IT CLEARLY WAS NOT), besides, in these Sweepstakes any such dates for Submission End Dates of Prize-Qualifying Essays must be Prominently Posted and I had checked through various links on this main IBD ICONS site for over 2 weeks and they didn’t even have a CONTACT PERSON TO CALL ABOUT IDENTIFYING SUCH A DATE.

Again, while I would not have minded a Free trip for two (2) to Las Vegas, the odds are that the early December, 2011 Grad Prize trip would occur at the height of the ravages of my Chemotherapy such that I would have to give away the trip, had I been fortunate enough to win it.  However, THAT would have been a pleasure of a lifetime to give away such a trip to son or daughter with his or her Dad or Mom.  Thus, my main intent was to add to the “DREAM” possibilities a child or a parent could aspire to despite battling Crohn’s Disease.  But I came away feeling yet again that Crohn’s Disease is treated like a “Second-Rate” Disease as this would have NEVER HAPPENED IN A BREAST CANCER SWEEPSTAKES.

Even the response to me by Ms. Davis from Janssen was condescending because what they should have done was apologize for any confusion and simply accepted my Essay and either disregard it when evaluating Essays or, if it were by chance the winner, they could again disregard it but bring it to the attention of all the applicants as a “finalist” just so my message gets across.  Bedsides, how many more Essays do you think they received from the apparent Essay Submission apparent Cut-Off date of Friday, August 26th and when I tried to submit my Essay in and around Monday, Septembers 5th?  THIS is what is so infuriating about Living with Crohn’s Disease as you, your Family and Friends know how ravaging the physical, mental, financial, emotional, social and professional effects can be yet others treat it like some Ceremonial Sickness which challenges few people and provides for an image-enhancing Black-Tie Charity Event.

I don’t want to make Janssen out to be “bad people” by writing this Blog Entry because their intentions are honorable, but they need to know that little “typos” on web sites and sloppy compliance with Sweepstakes Rules have consequences and that they need to treat Crohn’s Disease with the same professionalism with which they treat Cancer and other more mainstream Charitable Causes which they support.  To that end, I hope that some of you will email the person who wrote to me from Janseen (i.e., Linda Davis –  ldavis9@its.jnj.com) and explain to her how the manner in which her company has treated me is misguided, disrespectful and WRONG.   Nevertheless, I just appreciate you reading this Blog Entry and my 1,000 word Essay below.  But WHEN IS CROHN’S DISEASE GOING TO GET THE FIRST CLASS TREATMENT IT DESERVES?

Following Dreams & Living Life to its Fullest

Despite the Challenges of Crohn’s Disease & IBD

 Written by:  Michael A. Weiss, Esq., MBA

 

“Your Crohn’s Disease will never be a problem for us;

But how you handle it, could.”

My girlfriend in law school uttered those prophetic words to me one night in a hospital in Boston when I thought my disease would cause me to lose her.  She certainly set me straight by succinctly pointing out – only I could do that.  We are no longer together but I’ve never forgotten those words of wisdom and I have focused on “Moving Forward” ever since.  Moving forward can make you an “Inspiration” to those who care about you, while wallowing in self-pity will only make you a “Bummer.”  Which one do you want to be?  I’ve always opted for being an Inspiration; they get prettier girlfriends. :)

I’ve tried to utilize this positive attitude and pro-active approach throughout my 25+ years of battling Crohn’s Disease especially while being hospitalized over 200 Times & enduring approximately 20 major surgeries.  My ability to always focus on “moving forward” attracts the most thoughtful, compassionate and genuine friends who not only help me cope with the various pervasive challenging attributes which make up Crohn’s Disease (i.e., the physical, mental, emotional, social, psychological, financial, familial and professional effects) but they also teach me how to be a better friend and a better person.  Additionally, through my 25 years of experiences with an incurable chronic illness, I strongly believe that Friendship is the universal “Currency” in Life.  By application, I would appear to be one of the wealthiest people in the world.  However, American Express and MasterCard still do not accept this form of currency as payment for my monthly bill.  Nevertheless, the quality and depth of my Friendships are the characteristics about my Life which I am most proud of and, ironically, I have Crohn’s Disease to thank for that.

I’m 48 years old now, I was 21 when first diagnosed and the first “lessons” taught to me by my illness included being self-reliant and trusting of my body.  It also quickly became apparent that a Support Team and a Sense of Humor were going to be necessary “resources” which I had to nurture and develop in order to most effectively and enjoyably live my Life.  Over time, the importance of ALWAYS maintaining “Perspective” became the coping mechanism which I shared most with others because it is the easiest skill to personalize.  I utilized all of the above to pursue my dreams of being an Entertainment Attorney, Film Producer and a Published Author.  Whenever pain, a flare-up or a hospitalization potentially compromised my dreams, I nevertheless strived to be prolific, enthusiastic & resilient.  I might have been in the hospital or lying on my couch at home clutching an icepack trying to ease my abdominal pain, but I was always reading, listening & studying to make the best use of my “downtime.”  I couldn’t do anything

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about the unpredictable timing and physically disabling effects of the flare-ups, but I wasn’t going to let Crohn’s Disease dictate and control the growth and development of my mind.

In 2001, I wrote the critically-acclaimed Book entitled, “Confessions of a Professional Hospital Patient,” which chronicled my battle with Crohn’s Disease, both in, and out of, the Hospital.  I have been told by readers that the Book uniquely captures the plight of the chronically ill and does so in an inspiring and entertaining fashion.  These unique attributes quickly landed me on NBC’s “Today Show” and the mainstream attention which followed resulted in a National, Regional and Local Book Tour which also enabled me to raise positive awareness about Crohn’s Disease.  However, the tragic events of “9-11” changed the nation’s focus and after September 11, 2001, the nation’s interest in Healthcare, and by extension, my Book, were temporarily, and understandably, placed on-hold.

The Book has become an “Evergreen” seller and reviews continue to emphasize that it is “a very accurate medical and patient depiction of the hospital setting” and it is “laugh out loud funny” & “hilarious.”  Given the harsh realities of Crohn’s Disease and that “laughing” is not something one typically thinks about when discussing such a difficult illness, I’m proud of the Book being accurately informative yet also uniquely capable of providing a much-needed “laughing escape” for my fellow Crohn’s Disease patients and their friends/family.  Not a day goes by when I don’t see a Posting on the Web or receive an email, a letter or a tweet telling me that I brought a smile to the face of a Crohn’s Disease patient, child or parent who never thought such a book about their miserable disease could do that.  Nothing I will ever accomplish in my Life, short of becoming a parent, can compete with that recognition as it makes me feel like what I am doing with my Life is making such a profound and positive difference in the lives of others.

In and around July, 2010, Crohn’s Disease-related medical problems rendered me disabled.  But, when I was healthy enough, I utilized global and technology-powered Health Care Social Media Platforms (“HCSM”) and was thus afforded the opportunity to reach and influence the growing niche of people around the world living with some form of chronic illness through my “Professional Patient Perspective Blog,” Podcast, & on Twitter @HospitalPatient. Unfortunately, it now appears I am now “Permanently Disabled” because in May, 2011, I was diagnosed with Bronchiolitis Obliterans with Organizing Pneumonia (more commonly known by the acronym, “BOOP”) which I contracted as a result of Crohn’s Disease and/or as a result of taking the Crohn’s Disease “Anti-TNF Agent” drugs.  Accordingly, I started an intensive regimen of Chemotherapy in late August, 2011, and my prognosis for a significant recovery from the BOOP is good.

Perchance to Dream: After I successfully “Beat the BOOP,” I plan on writing a Second Book which I can only imagine will reach and help a great many more people

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around the world particularly if an Audiobook version is Produced in a variety of different languages. 

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Posted in "B.O.O.P.", "Confessions of a Professional Hospital Patient", Bronchiolitis Obliterans with Organizing Pneumonia, Chemotherapy, Colitis, Crohn's Disease, IBD, Janssen Biotech, Living w/ Chronic Illness day-to-day

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“Confessions of a Professional Hospital Patient”

Posted on August 30, 2011 | Leave a comment

With the advent of Facebook and the associated phenomenon of re-connecting with High School, College and Camp friends whom I lost touch with years ago, it was very difficult to explain to them how I became a “Professional Hospital Patient.”  Therefore, a few months ago, prior to gaining 40 pounds from Prednisone in my battle against the Lung Condition, “Bronchiolitis Obliterans Organizing Pneumonia,” better known by the acronym, “BOOP,” I recorded the Video above to better explain how 25 years of having Crohn’s Disease, 200 related-hospitalizations and 20 related-surgeries have made me a Professional Hospital Patient. (As I recorded this prior to being diagnosed with BOOP, please note that I have no explanation for why I keep getting diseases which are difficult to spell and pronounce!!)

In all seriousness, this Video also describes the motivation behind the Book I wrote entitled, “Confessions of a Professional Hospital Patient.”  More specifically, my candid and positive approach in handling all the adversity I was born into has seemingly attracted the most thoughtful, compassionate and genuine friends and also brings out the best in family members such that I can also call them “friends.” Not only do they all help me cope with what is at times overwhelming adversity from the various pervasive components which make up Crohn’s Disease (i.e., the physical, mental, emotional, social, psychological, financial, familial and professional effects) but they’ve taught me how to be a better friend and better person, and for that, I am grateful.  Moreover, I truly believe that Friendship is the universal “Currency” in Life and therefore I go to sleep every night comforted by the thought that I am one of the wealthiest people in the world.  Granted, American Express and MasterCard may not accept this “Currency” as payment for my monthly bill, the quality of my Friendships is the one characteristic about my Life which I am most proud of and, ironically, I have Crohn’s Disease to thank for that.

My good fortune in having such a strong Support System of Friends and Family made me feel obligated to share my experiences to help other less fortunate patients who did not have the “Support Team” I did to help them cope with the often cruel manifestations of Crohn’s Disease and its side effects and complications.  In that regard and through my various intense and diverse interactions with the Healthcare system, I had accumulated valuable instructive information and experiences which I was now going to share with other patients to help them live, love and laugh with ALL chronic illnesses.  Accordingly, utilizing a written format seemed to be the most efficient method. With that, the Book project was launched.

As Career accomplishments go, I am as proud of “Confessions of a Professional Hospital Patient” as anything I have ever achieved because I have been told by a diverse sampling of readers that the Book uniquely captures the plight of the chronically ill and does so in an inspiring and entertaining fashion.  When it was first published, these unique attributes of the Book landed me on NBC’s “Today Show” and what followed was an intense schedule of National, Regional and Local Radio and TV appearances which more than made up for the lonely nights in crowded and hectic emergency rooms.  Just as I take great pride in the quality of my friendships and the thoughtfulness and compassion of my friends and certain family members, I am very proud of my apparent ability to help people see their Crohn’s Disease and other Chronic Illnesses in such a different and almost inspiring manner.  To that point, reviews of the Book continue to say that it is “laugh out loud funny” and “hilarious.” Given the often harsh realities of Crohn’s Disease and that “laughing” is not something one typically thinks about when discussing Crohn’s Disease, I’m thrilled that the Book is considered informative yet capable of providing a much-needed “laughing escape” for my fellow Crohn’s Disease patients and their friends/family.

When the cure for an illness like Crohn’s Disease is often as troublesome as the disease itself (and I am living proof of that “Catch-22” ever since I started Chemotherapy a few weeks ago for treatment of the aforementioned lung condition, BOOP, for which I was diagnosed in May, 2011, as a result of taking the “Anti-TNF Agent” drugs for Crohn’s Disease such as “Cimzia” and “Humira”), it creates a story which needs to be told so I tried to tell it, as I live it.  People who’ve read the Book tell me I have been successful in accomplishing this goal and not a day goes by when I don’t receive a note in the form of an email, a letter or a tweet telling me that something I wrote brought a smile to the face of a Crohn’s Disease patient, child or parent who never thought such a Book about Crohn’s Disease could do that.  Nothing I will ever accomplish in my Life, short of becoming a parent, can compete with receiving a note like that because it makes me feel like what I am doing with my Life is making such a profound and positive difference in the life of others. If THAT isn’t “Success,” I don’t know what is.

Enjoy the Video and enjoy the Book – if you choose to purchase it.  Thank you.

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Posted in "Confessions of a Professional Hospital Patient", Chronic Illness, Crohn's Disease, Friends, IBD, Living w/ Chronic Illness day-to-day, Managing Chronic Illness

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