Contrasting Neurologists – The Ridiculous to the Sublime

Neurology April 13 2014

When stricken with a challenging medical condition, most people seeking the opinion of a referred-to medical specialist, such as a Neurologist, assume each will reach the same conclusions, conduct the same exams, and apply the same thoroughness and attention to detail in treating the patient with dignity, compassion and respect. Au contraire, as my recent experience proves with respect to Consultations with Two (2) Neurologists my Mom and I recently interacted with to treat my Mom’s condition of “Left Homonymous Hermianopsia” (“LHH”) which was correctly diagnosed by a Neuro-Optometrist while my 78-year-old Mom recuperated in a Rehabilitation Facility (“Facility”) from Double Knee Replacement Surgery.  In laymen terms, LHH is the loss of half of the field of vision on the same side in both eyes.  Therefore, in both of my Mom’s eyes, the left side is seriously compromised and this causes “blind spots” and/or she doesn’t always see or recognize things which quickly approach her like a close relative coming over to kiss her hello.  Apparently, it occurs as a result of a stroke or a traumatic brain injury from a fall and it also includes tormenting, but seemingly very specific, cognitive difficulties with respect to the judgment of “spatial” relationships.  As a result, my Mom’s “depth perception” is not calibrated correctly and this affects her ability to perform many daily tasks such as driving, cooking (and in her day she was a GREAT Cook!!) and even walking 10-feet from the car to a favorite local store I always drive her to in order to complete simple household errands.

The day-to-day effects of “Left Homonymous Hermianopsia”

I live with my Mom so I have known for 2 years or so that something was “off” about her as her depth perception at times seemed odd and she suffered occasional “spatial incidents.”  Those spatial incidents included suddenly falling down when the gradient of a concrete walkway increased by only an inch, going to the car’s rear door when I would pick up her at the supermarket when she should have opened the front passenger door, and being unable to sign her name on, or often even near, a designated line.  Then there is the short-term memory loss which starts out as forgetting where keys are left and soon includes the inability to work the TV Remote Control.  Mind you, my Mom has remained competent throughout this time and I still enjoy talking to her more than anyone else on the planet.  But, at unpredictable times, it has been frustrating to have an engaging and profound conversation with her about politics one minute, only to witness her complain the next minute about a beautiful functioning Dresser being broken because she was unable to “slide” a dresser drawer into it perpendicularly instead of horizontally.   Accordingly, if you spent 10 minutes with my Mom, you’d think she is a firecracker for her age with a quick wit to match but any additional time with her would surely reveal this tantalizing problem with “spatial relativity.”

 Diagnosing “Left Homonymous Hermianopsia” in my Mom

All along I thought her depth perception problems logically had to be attributed to her vision so during her recent knee surgery and subsequent physical rehabilitation when several nurses at the hospital and then at the Facility asked me if I knew my Mom had vision problems, I asked the Facility’s eye specialist to exam her.  Apparently, within only a few minutes, he was able to diagnose a rather large “Cut” in her Left Field of Vision and suggested a Brain MRI to confirm his suspicion of LHH based upon additional anecdotal information he had acquired from me, other members of my family and the staff at the Facility.  I then contacted my Mom’s long-time Ophthalmologist to obtain all of her medical records and he told me we needed to see a Neuro-Optometrist to confirm a diagnosis such as LHH.  Coincidentally, the Facility’s eye doctor was also a Neuro-Optometrist.  Therefore, the family treatment plan was to compare the new Brain MRI to another from approximately a year ago (as we tried to look into this depth perception problem then but the MRI was basically normal “for her age”) at this Neuro-Optometrist’s  office shortly after her discharge from the Facility.  We did all that and the diagnosis was confirmed by this Neuro-Optometrist with his adamant referral to a neurologist as to “Why” this happened and “How” it could be treated.  We never witnessed my Mom having a Stroke, but it is possible she had one.  We had seen or been around her when she fell, but no particular fall seemed worthy of an emergency room visit, which we were told was generally the benchmark for such a fall to cause LHH.  We left this Neuro-Optometrist’s office feeling good about at least having a Treatment Plan to help my Mom and consulting with a Neurologist was obviously the focus of that Plan. 

The Comfort of a Formal Diagnosis

As explained in previous Blog Posts of mine, “Diagnosis Journeys” can be arduous, expensive and emotionally challenging.  Knowing this and how my Mom must have been struggling the past two (2) years or so, it was comforting to have a formal diagnosis and then even my Mom came on board and began admitting her silent struggles whereas up until this point she was reluctant to seek a diagnosis for fear of something much worse being discovered.  More specifically, she had been married to my Dad for over Fifty (50) years and he passed away in 2008 from a confluence of serious heartbreaking medical conditions which culminated in Sleep Apnea-induced Dementia such that the combination of heart and lung problems from two (2) bouts with Lymphoma, Chemotherapy and Radiation had done such damage that the Dementia destroyed his quality of life.  His systemic physical and psychological pain was simply too much for any man to withstand especially when he was unable to love his healthy loving wife and best friend of over 60 years in a manner consistent with the way he felt about her.  My Dad was one tough customer and I thank him for passing onto me his resiliency trait but there was no consolation for my Mom and that’s why she was reluctant to learn what “Father Time” had possibly done to her mind and/or body.

 Looking for the “Right” Neurologist

While LHH sounds rather tame in terms of medical conditions to live with, I can tell you from living with my Mom that someone must be around her during most of her waking hours to make sure her condition doesn’t cause unexpected physical harm to her.  This may not be true with other LHH patients but when she’s 100% healthy, I like to refer to my Mom as being “frequently wrong, but never in doubt” and it is this determination and confidence which worries us about leaving her alone.  It is also one of the many reasons why I love her so much.  So, we began looking for the “right” Neurologist for her.  But how does one do that these days with so much more additional information available via the Internet such that one need not necessarily rely upon Word-of-Mouth recommendations?  Moreover, the Neuro-Optometrist who correctly diagnosed my Mom had suggested a few neurologists in his absolutely thorough treatment of her. Those things being said and also living in Northern New Jersey with relatively easy access to New York City doctors, there is always the temptation to find “the best” and those doctors are usually located in major cities such as New York City.

Having much experience myself with a variety of serious medical problems for the past 30 years due to my battles with the chronic, autoimmune and incurable Severe Crohn’s Disease, I decided to contact one of the smartest, most professional, kind and compassionate doctors I knew and asked her whom she would send her mom to if she were stricken with this condition.  Thanks to this pulmonologist, we quickly got the name and contact information of that neurologist and took the soonest available appointment which was approximately 3-4 weeks away.  For the sake of making this Blog Post about the underlying problem and not about a specific neurologist, let’s refer to this female doctor as “Neurologist #2.”  But the day-to-day stress of managing the LHH was intense and taking a toll on everyone so other family members had similarly qualified a few different neurologists located in the Metropolitan New York/New Jersey area so I began looking them up on the different Physician Rating websites.

We figured my Mom would need two (2) neurological opinions anyway so it made sense to pursue a second neurologist.  Sure enough, one of the doctors recommended by a family member had GREAT ratings on these Physician Rating websites and they were also similar to the ratings of Neurologist #2 who we were seeing in a few weeks.  That seemed to signify the end of our neurologist search so we called this other neurologist (“Neurologist #1”) and he had an appointment available only a few days away.  We took that appointment figuring it would at least provide some psychological comfort and we would learn more about my Mom’s condition prior to our appointment with Neurologist # 2 whom we figured would become her Treating Neurologist based upon her affiliation with a very prestigious institution and by virtue of the manner in which we were referred to her (that is, by my excellent and compassionate pulmonologist).

The Appalling Neurologist #1 Experience Begins

 Excited to get some answers, we got to the doctor’s offices early.  They say you don’t get a second chance to make a first impression and he failed that test when my Mom, still recovering from her Double Knee Replacement Surgery and relying on a cane or a wheelchair, when necessary, had to navigate a STEEP uphill parking lot with just her cane and leaning on my shoulder because it had no close handicapped parking and no accommodating wheelchair access was available, as it usually was at the doctors’ offices my Mom frequented.  Please also note that I am slowly recovering from Hip Replacement Surgery so my Mom’s reliance on me to traverse this “hill” was almost too much for ME to bear. I thought this steep uphill patient parking lot was odd especially since as a highly touted neurologist, much of his patient population had to be older people or disabled patients who desperately needed these physical accommodations.  However, not wanting to “judge a book by its cover,” we proceeded into his “office” which was a cheaply converted house with MINIMAL patient amenities.  The walls were old, the floors seemed ignored for years and the doctor’s office was more appropriate for a civil employee at a local, quiet municipality.  But, the man was highly praised on-line as a neurologist so I kept encouraging my Mom to be positive.

Neurologist #1 – “So why are you here?”

After exchanging pleasantries sitting across from the doctor in his medical office/exam room yet devoid of any medical equipment such as an x-ray illuminator, impressive medical textbooks or even a patient exam table, I politely explained my Mom’s diagnosis of LHH and simultaneously handed the doctor the CD results of the two (2) aforementioned MRIs as well as their respective written ONE (1) PAGE diagnosis reports along with the detailed written analysis and diagnosis from the Neuro-Optometrist.  After giving this CRUCIAL information no more than a cursory “acceptance” acknowledgement, the doctor placed the information “package” on his desk as if I had given him yesterday’s newspaper and looked at my Mom and I and said something substantially to the effect of: “So why are you here?”

I was surprised by his question given that we were explicitly told to see a neurologist and I was also annoyed at his dismissive attitude which indicated we were somehow bothering him by our mere presence in his office/exam room.  After all, I thought, he accepted the appointment knowing my Mom’s diagnosis and I assume he was going to accept payment from Medicare for the services rendered during the appointment so you’d think he’d at least exert some effort to earn his money?  My skepticism aside, I could also feel the “hope” slowly leak from my Mom’s face as if this extremely cold interaction was indicative of the beginning of the end of her active life and charming personality as she knew it to be but I ignored my instinct to physically “school” this doctor on the proper way to treat patients and I quickly and succinctly explained the essence of the information I had given him.  He listened but each time my Mom interrupted me to elaborate on her own story to better demonstrate her symptoms, he literally gave her “the look” as if to say, “It’s bad enough I have to deal with your son talking at me, lady [a/k/a “his PATIENT”], so why don’t you keep your mouth shut so we all can get out of here sooner?”

Neurologist #1 – Treatment Plan: “Same Time, Next Year”

When I was done speaking, he told us that all we could do was schedule an MRI in a YEAR and then come back to see him so he can ascertain whether or not the LHH had gotten worse.  He did not say what he would do if that happened; he just flippantly suggested we do this despite my Mom and I telling him about her day-to-day challenges with this condition and how a doctor specializing in diagnosing this condition had been adamant that we see a neurologist to understand why the condition occurred and how it could best be treated to at least improve my Mom’s quality of life.  That’s when I started feeling more than a little patronized by this doctor who should have retired to play golf if he had no interest in HELPING or LISTENING TO HIS PATIENTS.  I remarked that I found it strange he took our appointment knowing my Mom had LHH but asked us why we were there and also told us the ONLY TREATMENT was to have annual Brain MRIs and then pay to see him again for what amounted to, no medical advice.  I was thinking I could have had the same experience visiting my friend Eric, and he’s an attorney, or my friend Rich, who runs an Office Painting business.  Call me crazy, but such a qualified referral from a Neuro-Optometrist who had been DEAD-ON in diagnosing my Mom with a very complicated condition warranted a more substantial Treatment Plan from a neurologist than the mere scheduling of an annual encore performance of NOTHING.

Sensing my FURY with his complete CONDESCENDING BULLSHIT, Neurologist #1 reluctantly started explaining the science behind LHH and that my Mom must have had a Stroke in order to be in this condition.  We explained that we witnessed no such event nor did she fall so severely so as to cause such a traumatic brain injury.  Without inquiring into my Mom’s lifestyle or history of falls, and thus based on nothing but a coin flip in his mind, he maintained she “had a stroke.”  I asked if there were any additional diagnostic tests to prove that, and more importantly, I respectfully inquired if there were any tests or medications to help prevent her from having another stroke, if she had one in the first place?  With not one muscle changing in his face, he just said, “No.”  I responded, “Is there ANYTHING to be done to determine her present state of mind?”  He looked at me as if I had just ruined his tee time and went on to administer the most unscientific spur-of-the-moment Dementia Test I had ever heard of or witnessed and I was somewhat familiar with them from my days of practicing law and representing “alleged mentally incompetents.”

Neurologist #1 – Dementia or “Left Homonymous Hermianopsia?” – Flip a F’n Coin

Again, the doctor did not move from behind his desk nor did he refer to any paperwork when he started asking my Mom fairly simply questions to test her memory retention skills.  He asked her to remember 3 simple words in a specific order and continued asking her “time and place” questions.  She did well with her answers and she also was able to recall the three (3) words without any problems but then he drew a simple rectangle on a piece of paper and placed it in front of her and asked her to replicate it.  Since my Mom was an artist at one point in her life and could paint beautiful landscapes and portraits from scratch, in my mind, this was a significant test.  She drew a 1-2 inch straight line and kept going over it with the pen thinking she was creating a rectangle when all she was doing was drawing a very BOLD 1-2 inch line.  Based on our detailed conversations with the Neuro-Optometrist who diagnosed her with LHH,  this was evidence of how severe her LHH problem was with respect to spatial issues such as drawing a rectangle and making sure the overall shape was correct and the opposing lines were generally parallel with one another.  Despite my Mom’s obvious poor performance on this spatial part of the spontaneous test, the doctor was un-phased and then said something to the effect of, “Okay, so we are done here, right? You’ll contact my office in a year or so and we’ll do another MRI of your Brain.”  He then began to get up from his chair.

THE WORST DOCTOR CONSULTATION I HAD SEEN IN 30 YEARS

My Mom thought she had just witnessed the movie trailers with a film feature sure to follow but the doctor got up to leave giving off the impression of finality similar to end credits as they begin to roll down the screen.  She started to verbalize more specific examples of her experiences with LHH and he turned around and looked at her like he had heard enough as if she had been a loser on a TV Game Show who wouldn’t leave the contestant’s chair when asked to do so.  For a few seconds, I felt very sad as I could feel my Mom’s world coming apart at the seams but my outrage took over at this doctor’s disgusting behavior toward his patient, my Mom, and how that repulsive behavior could unfairly affect my Mom even though all she had really witnessed and experienced was THE WORST DOCTOR CONSULTATION I HAD SEEN IN 30 YEARS with my chronic, incurable and severe disease which has caused me twenty-plus (20+) surgeries and two hundred (200) or so hospitalizations.

As the doctor left the room and my Mom and I were left to pick up the medical information we had brought to help facilitate the doctor’s understanding of my Mom’s situation, I quickly changed my focus to my Mom and concentrated on making sure she forgot about this douchebag as soon as possible knowing there was nothing I could do to make this doctor act like a professional physician.  I apologize for my choice of spicy language but there are no other words to accurately convey what occurred with Neurologist #1 or to describe him in his professional capacity.  We left the office but as I carefully traversed down the parking lot hill with my recently replaced left hip to pick my Mom up at the top, near the entrance to the office, I was getting angry that this doctor was going to be paid by Medicare for what had just taken place when he should have been reported to the New Jersey State Board of Medical Examiners for both his inept Treatment Plan and the condescending manner in which he had treated his patient.

After helping my Mom get back safely into our car, I went back into the converted home office and saw Neurologist #1, already dressed to leave, joking around behind the counter with his Office Manager. They looked at me as if I had come back to find lost eyeglasses and I said firmly, “My Mom’s diagnosis is, what it is, but all you did in that excuse for a Consultation was remove all Hope my Mom and I had built up in anticipation of this meeting with you.  Your Treatment Plan makes no sense and if someone treated your mother in the same patronizing manner as you treated mine, you’d be incensed.  How you received positive reviews on Physician Rating websites is beyond me.”  I then turned around and returned to the car and comforted my Mom.   Thankfully my Mom is perceptive enough to realize what she had just experienced so we proceeded to “turn the page” and waited for her appointment with Neurologist #2.

Neurologist #2 – Finally, a THOROUGH and Compassionate Professional

While we were not set to meet with Neurologist #2 for 2-3 weeks, when I made the appointment I had asked the Office Manager to call us for an earlier appointment if another patient cancelled.  Almost like a sign from above, we received that phone call 3 days after the above “Consultation” with Neurologist #1 and were scheduled to meet with Neurologist #2 the next day, Saturday.  Wait, a doctor who works on Saturdays?  As I said above, you don’t get a second chance at making a first impression but this time that first impression was of a dedicated and compassionate doctor who tried to be available when she was most needed by her patients.  I again gathered together all of the diagnostic information referred to above and brought it to the Consultation.  We parked in a handicapped parking spot (my Mom has a Handicapped Placard) and since the entrance to the doctor’s office was a bit of a walk, we easily got a wheelchair for my Mom and wheeled her to the office via the wheelchair ramp.  For this Consultation, I did not need a Walking Stick just to get out of the parking lot.

Neurologist #2 to Neurologist #1  – “From the Sublime to the Ridiculous.”

After filling out various medical and insurance forms while this doctor reviewed the same exact diagnostic information I had given to Neurologist #1 only to watch him cast it aside to ask us what we were doing at his office, Neurologist #2 gently came into the Exam Room and introduced herself to my Mom.  She immediately demonstrated her specific knowledge of my Mom’s condition and then sat down and listened to me, my sister and my Mom succinctly describe her LHH condition.  She asked questions to verify different facts and then she proceeded to conduct a thorough “sensory” exam of my Mom by literally evaluating her nerves’ reactions from head to toe.  Whenever she came across what appeared to be an abnormal reaction, she noted it in my Mom’s chart but then a few minutes later retested that part of her body to make sure of any abnormalities.  Neurologist #2 was gentle with my Mom in both the way she touched and listened to her.  Compared to my Mom’s experience with Neurologist #1, this experience was sublime and the other ridiculous.  Now I know the true meaning of the phrase: “From the sublime to the ridiculous.”

Neurologist #2 – The Exam AND Consultation

At the appropriate time, the doctor was kind enough to entertain questions from each of us and her answers revealed her intentions to perform a COMPLETE WORKUP of my Mom to determine the cause of the LHH and simultaneously start Occupational Therapy to help my Mom combat the day-to-day challenges caused by the condition just in case that is her only recourse or a part of the ultimate Treatment Plan.  In response to our concerns about the culprit being a Stroke and us wanting to prevent future such occurrences since we never witnessed it, the doctor immediately, politely and compassionately “ordered” my Mom to take a Baby Aspirin every day.   She then explained the various diagnostic tests she wanted my Mom to have and asked me to make sure she hadn’t already gone for these tests within the past year since Medicare would not pay for the test under those circumstances.  Those tests are an Echocardiogram and a “Vasc Carotid Duplex, Full.”  The doctor also tested my Mom’s blood for various minerals, B12 and B6 and made sure we were going for a more comprehensive blood test regarding her cholesterol and sugars for which she would have to fast.  My Mom’s Internist had prescribed such a blood test and I had indicated we intended to go for it on Monday.

Immediate Post-Exam Follow-Up with Neurologist #2 / #1 – Nothing

We must have spent more than 30 minutes conferring with Neurologist #2 then left with a laundry list of tests, procedures and occupational therapy prescriptions to follow-up on whereas the Consultation with Neurologist #1 consisted of a 15-minute conversation and the only follow-up required was calling back in a year to schedule another Brain MRI.  I almost forgot, we also left the office of Neurologist #2 with HOPE and SMILES.  More specifically, as we checked out of the office of Neurologist #2, I stopped by the Office Manager’s desk and she handed me several documents.  One was the prescription for Occupational Therapy and another was a 4-page “Clinical Summary” of my Mom’s exam which specifically enumerated both the “Health Issues Reviewed” during the Exam and the currently proposed “Treatment Plan” which included the list of the aforementioned prescribed tests and activities.  When we left the office of Neurologist #1, all we had to do was remember to contact him IN A YEAR TO SCHEDULE ANOTHER BRAIN MRI.  He did not prescribe Baby Aspirin to help prevent another Stroke, if, in fact, one had occurred; nor did he express any interest in examining my Mom’s nerves, heart or Carotid Artery.  Neurologist #2 also scheduled a follow-up exam for approximately one (1) month later at which time she planned to conduct the Cognitive Test which, according to the Office Manager, is standardized and based on written questions and observations used by the doctor each time she conducts such an evaluation.  Neurologist #1 “made up” his Cognitive Test of my Mom on the spot.

Conclusions

Some Doctors Suck & Some Doctors Don’t Care – just like in other Professions

Just like in ANY profession, some doctors are bad at their job and some simply don’t care.  For traditional reasons and because of rote human nature, we don’t expect this in the practice of medicine but as the above proves, it does happen.  Healthy people having to suddenly address a medical problem after many years having never gone to a doctor, or having never been hospitalized, typically don’t ever expect doctors to be lacking in humanity or humility, so for THEM, Physician Rating website grades provide valuable information from which to make choices of physicians.  I pity them because as the above proves, GREAT physician website grades do not make an even good physician.

Word-of-Mouth Physician Referrals are more Reliable that Website Ratings

The fact that Neurologist #1 received GREAT reviews on several Physician Rating websites is exactly why I think such Doctor Rating websites are unreliable.  There are too many unknown variables to render such Doctor Ratings accurate.  Who knows, Neurologist #1 may have received terrible personal news immediately prior to my Mom and I walking into his office and/or he simply didn’t like me?  Maybe Neurologist #1 had phony patients provide the aforementioned Ratings?  I don’t know the answer to those questions but I do know that in my experience as somewhat of a “professional patient,” rating doctors on an objective scale is like devising a rating scale for male or female “attractiveness” or “good-looking-ness.”  Different characteristics carry different weight to different patients just like a woman who is a “9” to me might be a “4” to someone else, and vice versa.  Accordingly, please be wary of Physician Rating websites and try to use social media to network for “Word-of-Mouth” physician referrals because the elaboration of subjective discourse regarding a physician-patient “transaction” will enable you to determine whether or not that physician is appropriate for what you seek and/or need.

Be mindful of the Psychological effects of exposing Patients to Apathetic Doctors

As for the “extraordinary” work performed by Neurologist #2, it is actually commonplace amongst the many WONDERFUL Physicians who listen to their patients and actually care about them. It only seems “extraordinary” when compared to the listless, arrogant, patronizing and condescending work ethic of Neurologist #1.  In that regard, please always keep in mind the psychological effects of exposure to apathetic professionals like Neurologist #1. It’s one thing to remain unemotional to ensure that a patient receives the best possible care but it is an entirely different matter when a neurologist is so indifferent he forgets to “prescribe” something as simple as Baby Aspirins when a patient with LHH presents with the propensity to have Strokes.

Pay attention to the “Little Things”

Please also pay attention to the little things like Neurologist #2 seeing patients on Saturdays or Neurologist #1 not caring about his patients’ safety by building a parking lot more suitable to mountain climbers than to patients with Double Knee or Left Hip Replacements.  (By the way, it is my understanding Neurologist #2 routinely sees patients two (2) Saturdays every month and has been doing that for some time.)

The “right” Physician for a Patient isn’t necessarily the “best” Physician

Finally, the “right” physician for a patient is not always the “best” because in my Mom’s case, for example, I know she wants a doctor who will listen to her and who will be compassionate with her.  For whatever reason, she also prefers a female because at her stage in life she thinks it is more probable she will obtain such care from a female physician.  I know my Mom’s hypothesis is WRONG and that she can receive gentle, compassionate care from a male physician but this is what makes her comfortable and provides her with the “hope” she now needs to battle a very complicated medical condition.

I trust Names are not necessary in this Blog Post to appreciate the learning points of my recent experience with these Neurologists

This was an emotional Blog Post for me to write and I did not feel well while writing it but I think it is important to share what can be learned by comparing and contrasting my REAL experiences with these two (2) VERY DIFFERENT Neurologists.  While I have not named Neurologist #1 in this Blog Post, I usually believe in comic Jay Mohr’s edict to “put your name on it” whenever making complaints but I don’t want to compromise my Mom’s care with Neurologist #2 by purposely “outing” Neurologist #1 when I could just as easily communicate the learning points from these experiences without divulging names.  I hope readers can understand that.

leave a  comment  BUTTON

Adjusting to Ostomy through physicality of playing Hockey

1-Berlcak and Weiss 1

 

April 4, 2014

I recently had the privilege to conduct a Video Interview with the soon-to-be-announced winner of the 2014 “IBD Heroes Award,” Mr. Andrew Berlack.  This Award is being funded by my Non-Profit Foundation, “Crohn’s Disease Warrior Patrol,” [The "CDWP"] because we want to highlight POSITIVE stories about people with Crohn’s, Colitis and any other Inflammatory Bowel Disease to provide much-needed INSPIRATION living with IBD requires on a daily, hourly and often minute-by-minute basis.  There will be more 2014 IBD Heroes because we want it to be dynamic so that when we find a great story we can share it and showcase that “IBD Hero.”  It looks like the only limitation will be my ability to edit and post the video interviews with the winners!!!!   

I don’t want to spoil the formal announcement of Andrew Berlack’s remarkable story but I think its message is SO INSPIRATIONAL on several different levels that I couldn’t resist providing this “teaser”:

Andrew Berlack WAS a Federal Law Enforcement Officer (he carried a weapon, etc. and was a real Police Officer) and then he got Crohn’s Disease and ultimately had his entire rectum removed and had an Ostomy put in its place.  When he was still working as a Police Officer, but suffering terribly from the unpredictable hospitalizations and bouts with Crohn’s Disease, his fellow police -men and –women donated to him some of their vacation days to cover the growing amount of his sick days to stave off their accumulation from disqualifying him from being a Cop – that’s how special this guy is.  And it gets better …

He was nevertheless forced into filing for Federal Disability and spent the next 4-5 years learning to live with his ostomy before he considered his next step in life.  Most people do this by experimenting with going to different public places with friends or by eating diverse foods.  Not Andrew.  He chose to assimilate to the world of being an Ostomate by PLAYING ICE HOCKEY.  It turns out the “physicality” of hockey tested his ostomy to the extreme and those positive experiences of once again “feeling normal” gave him enough confidence to move forward with his Life Plan (he also got MARRIED during this time period) such that he began working a few hours a week and kept a fire burning for one day returning full-time to Law Enforcement.

Being “consistent” and holding down a physically-demanding job with the ostomy took a few years for Andrew to adjust to but those worries paled in comparison to those which required him to sharpen the tough and reactionary mindset required by any law enforcement position.  When I interviewed him, I got the feeling his ubiquitous visualization of 100% positive ostomy outcomes on the physically-demanding hockey rink helped him overcome any such worries but there were practical obstacles which couldn’t be scaled with the help of a slap-shot.  The most significant of which involved the weight and snug fit of the typical uniform belt worn by law enforcement officers as it conflicted with the space needed for his ostomy to lie still and uninterrupted. But one night, completely by chance, Andrew saw a policeman on television wearing all his necessary gear on his suspenders.  It took me a while to grasp the visual he was describing but suffice it to say, horizontal was no good and vertical was life-altering for Andrew as it fulfilled whatever gear requirements he had to carry while preserving the necessary space for his ostomy so as to avoid any messy accidents.

The fire burning inside him was satiated at first by working a few hours each week in Retail Shopping Centers in “Loss Prevention” policing shoplifters.  But once he learned of the different way to “wear” his belt,  he was transformed back to a life of potential normalcy.  In that regard, Andrew most recently got a job as an “Armed Protective Agent” for a private security company where his various law enforcement assignments include protecting government witnesses and the like.  He is not “back” on the police force YET but he is back working and helping enforce the law and living out his dream of protecting people which he thought was lost due to his Crohn’s Disease and the ostomy.

Using our Minds to Teach our Bodies

I am presently organizing some National Hockey League (NHL) surprises for Andrew as his “IBD Hero” Award and you will hopefully hear about it through various promotional efforts but I found the power of his mindset as strong as any medication I have ever taken in my 30 years with Crohn’s Disease.  I was also amazed he got married during the middle of his acclimation to the ostomy and while being technically “Disabled.” That proves there’s hope for fools like me who stop dating when “the shit hits the fan” for fear of harming what otherwise might be “the relationship” I’ve been seeking my entire life.  That got me to thinking how Andrew’s story is inspirational on a variety of levels and thus I defer to readers of this Blog Post to take from it what you need in order to overcome the obstacles of Inflammatory Bowel Disease which you face and resume your life pursuits.  The life dream may be a little different after a diagnosis of IBD but the fire can burn a long time when we use our minds to teach our bodies.  leave a  comment  BUTTON

4 Tips for Helping You Cope with Breast Cancer

Breast Cancer March 28 2014

This guest blog on breast cancer help was written by ShareCancerSupport.org, a non-profit organization dedicated to helping women facing breast and ovarian cancer. For more information, visit their website.

Leave A Comment BUTTON

A breast cancer diagnosis can be scary, and it rightfully should be. If you or someone you know just got this heartbreaking news, you may be wondering how you will go on, and what to do from here. Cancer and its correlating treatments can bring about both emotional and physical changes, and here are a few ways to help you cope with these changes and the thoughts, feelings and emotions which often accompany them.

 Talk About It

Whether it’s to a friend, family member, a pastor, rabbi, co-worker, or your own personal God, talk about what you are feeling and going through. Don’t struggle and keep your thoughts, feelings and emotions to yourself because it will make you feel “healthier,” or at least more “normal,” if you let them out, and get them off your chest. In that regard, scream, cry or do whatever you must in order to get those sensations out. Keeping them inside your body will do you more harm than good, and by sharing these thoughts, feelings and emotions you will be giving your loved ones their desired opportunity “to be there for you.” It will also get rid of a great deal of anxiety when you share your feelings with someone who listens to you.

Live Life One Day at a Time

With all that lies before you, it can seem overwhelming trying to think about what will happen in the future. Therefore, take time each day to do things that make you happy, and be around positive people who love you. Focus on making it through one day at a time, and not trying to think about what will happen next week, month, or year.  Just put “one foot in front of the other” to get through difficult days.

There will also be days when you can’t do anything but cry; and you need to understand that’s “ok” due to the overwhelming nature of your diagnosis.  This reaction is a perfectly normal response to coping with something so huge.  More importantly, never be ashamed to let people see you cry. You are human and have emotions like everyone else.

Take Care of Yourself

If you feel like going to a movie and going shopping do that! If you feel like curling up on the couch with a good book, that’s great too. Take advantage of offers you get for help around the house, with childcare or a meal. Eat a healthy diet, and take all your medications as prescribed. If you are tired, make sure to rest, and never try to push yourself to do something you truly aren’t up to doing.

Remember You Are Not Alone

Last, but not least, always remember that you are not alone in this. Thousands of women every year get this terrible diagnosis, and there are support groups everywhere which can help you find people to talk to.

My 1984-1985 “Diagnostic Journey” to Crohn’s Disease

Crohns March 24 2014

 

 

 

 

 

leave a comment BUTTON

Due to various painful ramifications of my recent successful Hip Replacement Surgery, “I didn’t have time to write a short letter, so I wrote a long one instead.”  Mark Twain 

Mind, Body & Spirit vs. Damn the Torpedoes

In my most recent Blog Entry I described the “Diagnostic Journey” as the necessary undertaking patients must initiate to make sense of their serious, abnormal, debilitating and unrelenting medical symptoms and doggedly pursue the proper diagnosis and successfully treatment pursuant to some CPT or HCPCS insurance code while the world of traditional medicine doesn’t recognize their symptoms as reflective of ANY such insurance codes and health care professionals characterize their palpable complaints as stemming more from their mind than from their body.  Accordingly, powerful and pervasive psychological doubts can creep in from patient exposure to repeated conclusions by the most respected and erudite of medical professionals that what appears as real to these patients as the need to breathe is invisible and thus of no physical consequence.  Due to the societal pedestal upon which most doctors are placed by the patients’ friends, colleagues and loved ones, these doubts logically can spread to the counsel of these patient confidantes and then the Diagnosis Journey itself could be compromised.  It is at this point when lonely, counterintuitive self-assuredness intersects with seemingly proven scientific hopelessness and the patient’s mind, body and spirit must agree to move forward, damn the torpedoes and commence the “Patient Diagnosis Journey.”

The Support of my Parents & “Available Time” fueled my Cause

In 1984 when I faced such painful, unpredictable, systemic and often bizarre symptoms, I was just a naïve 21-year-old and it didn’t make sense to me that a person could suffer as much as I was with palpable and obvious medical symptoms yet doctors couldn’t help me. Moreover, when doctors realized they couldn’t help me they openly donned my sincere, desperate and at times severe complaints as apparent “made-up” problems to seek attention.  It was as if by stumping them, they resented my having challenged their medical expertise and experience.  For some reason, their sheer arrogance and what I perceived to be “meanness” at the time only strengthened my resolve to figure out the cause of my dire situation.

My determination sounds cool and tough but the reality is it all would have been for naught if I did not have the unyielding support of my parents.  That support came in various forms and included coming to doctor appointments with me for moral support, helping me with the health insurance paperwork, paying for much of the costs incurred on my Diagnosis Journey and literally holding my hand and telling me “everything’s going to be okay” when I was in the fetal position on the bathroom floor trying to manage the increasingly severe abdominal pains most times I felt a bowel movement coming on.  Additionally, I was single and just out of college at the time so there were few obligations I couldn’t put off or postpone to pursue the correct diagnosis and treatment for my medical problem.  That said, it occurred at a time in my life when I was supposed to begin some type of professional career but I hadn’t yet figured that out and my unpredictable health issues made temporary jobs the best fit for me.

What Happened to Me in 1984/1985, Shouldn’t Happen NOW

During my Diagnosis Journey, I became astonished at the narcissistic and rote manner in which most doctors performed their job.  For example, the more specialized the doctor, the more they seemed interested in only validating their learned expertise by telling me with big scientific words what my symptoms did not indicate; as opposed to listening to me as a person and trying to apply their formidable medical experience and talents to assess my medical problems, no matter how atypical they appeared.  In fairness, it was 1984/1985 and I think the doctor-patient dignity and respect disparities have substantially changed due to the proliferation of health care social media and the democratization of most healthcare “transactions” such as the doctor-patient diagnosis/treatment discussion in the Exam Room.  Perhaps more importantly, it is the ability of patients to almost instantaneously swap stories and symptoms with other patients from all over the world which has created a technology-powered “Patient Movement” which has empowered patients with incredibly valuable information to help with all diagnosis and treatment situations.

I caution these newly “Empowered Patients” to nevertheless always be respectful of all Health Care Professionals because it is mutual respect which will create the “collaborative” relationship they seek, especially with respect to diagnosing and treating chronic, autoimmune or rare diseases, when “listening” is the most productive tool in the Exam Room.   There are many other ways patients can now utilize health care social media platforms such as Facebook Groups, Google+ Hangouts, TweetChats, Podcasts and Skype sessions but I leave that discussion for another Blog Entry.  However, just knowing the many ways in which patients can now be aided in being diagnosed and treated helps me sleep at night knowing that another child or young man won’t have to go through what I did in 1984/1985 to be correctly diagnosed and treated with Crohn’s Disease.

My Diagnostic Journey w/ Crohn’s Disease – A Foretelling Childhood?

It was 1984 or so and I had just made it through four (4) years of college foolishly thinking having a hangover was how everyone felt when they woke up in the morning.  I always had stomach “issues” going back to my childhood but they never became “systemic” (i.e., they never affected other body parts or systems) as eventually I was always able to connect them back to either indulging too much in alcoholic beverages, eating greasy foods late at night or, eating food which, for some reason, did not “agree with me” or slowed down my digestion to the point where I would get “distended” or visibly “bloated” and have to lie face-first on my bed for a few hours to combat the pain.  As I found out later in life, my parents were well aware of my stomach problems ever since I was a baby as they had great difficulty finding baby-formula which I was able to properly digest.

I also learned during a recent chat with my Mom while interviewing her about her role as a “Caretaker” for a Documentary my Nonprofit Foundation, Crohn’s Disease Warrior Patrol, is producing about the potential severity of Crohn’s Disease, that as a baby, on occasion, I would need physical “assistance” from my pediatrician with secreting bowel movements from my body. According to my Mom’s best recollection, occasionally I would scream and cry for hours with a different and more serious type of intensity and she’d take me to the pediatrician where he would examine me and notice a bowel movement “locked and loaded” but too shy to come out.  His forceps then aided what should have been a natural process and I would be fine for many months.  I wonder how he billed insurance companies for that!!!

Additionally, now that I think about it, my first general doctor diagnosed me in high school as having a “slow motility” problem because I was often constipated and, as explained above, became painfully distended.   But there was never a reason given for the causation of the slow motility.  I also remember that symptoms typical of seasonal allergies would affect me year-round and be unpredictable.  The worst of these allergy symptoms was the fatigue which would overtake me to the point where I would need to suddenly sleep at fun family dinners.  My Dad would yell at me to wake up because it was impolite and he figured it was the result of some shenanigans my friends and I had taken part in the previous night.  But I had no control over the sudden onset of the fatigue which made me feel like I had just taken the drug “Benadryl.”

At some point my folks took me to an Allergist and I participated in several diagnostic tests but the conclusions were always vague compared to the specific results my friends received when they learned they were allergic to dogs or cats or pollen, etc. and they had to go back to the doctor every 2 weeks or so for allergy shots.  I always thought that was so inconvenient until a well-respected allergist told me and my Mom after his close analysis of the allergy tests he administered that I would only be free of my symptoms if I lived in some foreign country (I think it was Brazil) because whatever he thought I was allergic to was not grown there.  Unfairly, based on that lone experience, I equated allergists with voodoo doctors but as it turned out, there is some environmental component to my Crohn’s Disease.

Back to How it all Began – Four (4) Wisdom Teeth Extracted

In and around 1984, it was common to have all four (4) Wisdom Teeth extracted at the same time.  I had some type of painful infection or swelling in one of the wisdom teeth so my Mom found me a top notch oral surgeon and during the consultation he convinced me to have all four (4) wisdom teeth out at the same time, especially since I “was a healthy young man.”  While it was performed by an oral surgeon, it was such a common procedure amongst my peers that setting it up and then discussing it with my friends felt as innocuous as anything performed during a routine dentist appointment.

Seriously Swollen & Inflamed “Chipmunk Cheeks”

After the Wisdom Teeth surgery, I woke up the next day and looked like a chipmunk with VERY swollen cheeks.  I had anticipated this “look” and even took some very funny self-deprecating pictures which today would have made their way to Facebook and ruined any chance I had at future employment.  Well, not exactly, as I’m sure I had a future dressing up as a promotional Disney character waiving prominent Sales Signs in front of automobile dealerships to highlight weekend sales to the rubber-necking drivers. Anyhow, after being good-naturedly mocked by everyone within walking distance of my house, I began to experience some pain in and around the gum areas where he had operated but it was tolerable with the pain medication I was given.  Again, this was consistent with every similar oral surgery I had heard about from my friends.  But after the gum pain had resolved in a few days, my cheeks were still very swollen and this was an outlier which kept me in my house for much longer than I had expected.

Nurse “Captain Obvious”

Approximately a week after the wisdom teeth surgery, I remember going for the initial follow-up exam and prior to the oral surgeon entering the exam room I noticed “concern” on the faces of the nurses.  Each was observing me like a laboratory rat until the one loquacious youngest nurse commented that she had never seen someone’s face still so swollen one (1) week after the surgery.   The others appropriately looked at her with contempt for sharing such a potentially litigious professional observation.  The oral surgeon was not as forward as Nurse “Captain Obvious” when he first saw my super-swelled cheeks as he made some funny comments about them to diffuse the strange type of tension which was discernible in the room.  After examining me more closely, he told me everything looked fine but because the swelling was still on the extreme side, he was putting me on a course of antibiotics strictly as a precaution to guard against an infection.  He didn’t specifically explain the inflammation and by the casual way in which he handled things I just assumed this had happened to other patients and that Captain Obvious was just inexperienced.

THROBBING Cheek Muscle “Rebound Pain”

The antibiotics seemed to be working in terms of reducing the swelling in my cheeks but they were causing me a continuous upset stomach.  Since I only had a few days left of the antibiotics, I figured I would ride it out and tolerate the stomach pain for the benefit of being able to show my face in public and simultaneously conclude my interactions with the oral surgeon.  However, just around the time the swelling in my cheeks had receded and returned to normal, I began experiencing a seemingly “phantom” pain as the muscles in my cheeks came alive like a developing California wildfire suddenly turned fierce by the Santa Ana winds.  It literally felt as if someone had stretched my cheeks as wide as possible and kept them stressed for a significant time period such that now my cheek muscles were throbbing as a result of having been over-extended for so long.  Based on my inability to sleep or do anything but hold hot compresses against my cheeks, I thought this unrelenting pain might be indicative of a more serious problem or infection so as I was initially instructed by the oral surgeon about any complications, I went back to the oral surgeon to seek treatment for this latest development.

NSAIDs not for me due to “Bad Stomach”

Ever since I was a teenager, anti-inflammatory drugs were never an option for me because I had tried some popular over-the-counter brands a few times for common sports injuries but they always caused such severe stomach pain that my general doctor who was aware of my “bad stomach” advised me to never again take “NSAIDs” [i.e., non-steroidal anti-inflammatory drugs].   His stern warning about over-the-counter drugs seemed strange at the time but I do recall it came after an emergency room visit when my abdomen had become dangerously “distended” from me taking several NSAIDs so that I could play in some basketball tournament with a severely sprained ankle.  I had advised the oral surgeon of this at the get-go just as I did all new health care professionals before they began treating me since NSAIDs had become quite popular both as a pain reliever and to reduce inflammation and it was unusual that I could not take them.  If any doctors questioned my sensitivity or they nevertheless tried to convince me to try a new NSAID, I invited them to contact my general doctor who had been treating me since I was a young boy.

I thought about this as the oral surgeon explained this cheek muscle pain to me as a minor consequence of him having to use a surgical device to hold open my mouth for the duration of the wisdom teeth surgery. Instinctively, he suggested that any over-the-counter Anti-Inflammatory medication (i.e., NSAIDs) would handle the pain.  But then he remembered I couldn’t take NSAIDs and he assured me not to worry as the pain would go away shortly when the cheek muscles “recovered” from the trauma of having been stretched by a mechanical device for a few hours.  He also again prescribed some typical post-operative antibiotic just in case an infection was developing.  But this was a different anti-biotic because I had complained to him about how upset my stomach became from the last antibiotic he had given me.

Narcotic Pain Medication for Painful Inflammation

The oral surgeon had answered all of my questions but I found it strange he was offering no medical relief for my non-stop throbbing pain, which he caused and which was preventing me from going to work for a few days.  I thought to myself, “Maybe he’d let me stretch his mouth open for 3 hours so he could understand the intensity of the pain I was dealing with?”   In any event, I thanked him for alleviating my fears about the pain being indicative of a more serious problem and asked him for more narcotic pain medication so I could function as a productive person at my new job in New York City while my cheek muscles returned to their normal respective resting places on my face.  I also commented that this cheek muscle “rebound” pain was worse than the inflammatory pain from the surgery.  But before I could finish my sentence I could see the oral surgeon make a face as if he thought I was crazy or driven by some other agenda. To illustrate his point, he commented that I was the only person who had complained of this pain being so severe since anti-inflammatory drugs seemed to alleviate the pain.  I then reminded him that I couldn’t take any NASIDs and I could see him slowly begin to understand my situation as he began to commiserate with me.  He then even attributed my inability to take NSAIDs as the reason why my cheek muscles hurt so much.  Still, he was not writing a prescription other than the one for antibiotics and I wasn’t leaving his office until he did.

It seemed as if he thought I should not require pain medication for the inflammation in my cheek muscles since no other patient had required it despite the fact that he knew they were aided by NSAIDs, and I was not.  Accordingly, I just stared at him waiting for the prescription and I ignored his facial expressions conveying his obvious thoughts that I was somehow trying to string out a Percodan or Percocet high.  He relented after he realized I wasn’t budging and without looking at the Percodan prescription to determine the amount of pills, I thanked him for treating me in such a personalized manner.  Since I didn’t know how long this cheek muscle inflammation would last, I deferred to his professional judgment and was prepared to trust him that it would be a very short period.  I then hoped this was the end of my relationship with the oral surgeon even though he was a nice man.  I was just tired of the hassle of going back to him and also having to substantiate my need for different medical treatment than other patients for what was a relatively common medical procedure.  (Unfortunately, I would soon have to get used to life-long complications from routine medical procedures and begging doctors for help regarding pain from inflammation because 30 years with the autoimmune and inflammatory Crohn’s disease made no medical procedure “routine” and it also left me unable to normally fight inflammation and this made virtually every similar interaction with healthcare professionals just as awkward, difficult and dignity-defying.)

Wisdom Teeth Inflammation, Take 2 – “2nd Verse, same as the 1st”

They say “you meet the same people on the way up, as you do, on the way down.” So, a few weeks later, when, without provocation, I woke up and the LEFT side of my face looked like I had just gone through another multiple wisdom teeth surgery, I was glad I had left the oral surgeon on such good and respectful terms. As I recall, my last communication with his office was over the phone when he had to switch me again to a different antibiotic as the one I was taking for the cheek muscle pain was causing intolerable stomach pain.  I was not in pain this time from the swollen cheeks but I again looked like a chipmunk so it certainly fell within the “complications” department necessitating a phone call to the oral surgeon regardless of how much time had passed since the initial surgery.  But when I called his office about yet another swollen cheek problem related to my surgery, I think they thought there was something wrong with me mentally because it seemed impossible for my cheeks to swell up again to chipmunk-level almost two (2) months after I fully recovered from the wisdom teeth surgery.  Reluctantly, the receptionist put me on hold so she could speak to the oral surgeon to figure out when he could see me.

At first she came back with an appointment in 3-weeks’ time but then I carefully explained to her that I looked EXACTLY AS I DID THE DAY OF THE ORAL SURGERY and I wasn’t waiting 3-weeks for whatever infection brewing inside of me to cause me even more problems.  I also asked her rhetorically how many of his patients had such serious inflammation in their cheeks two (2) months after the oral surgery.  She politely placed me on hold again, and after another consultation with her boss, the receptionist now had an attitude and sternly said the “doctor” would squeeze me in later that day but I must be prompt otherwise he would not be able to see me for a few days.  Her attitude bothered me because if this were her, she’d be crying and threatening to sue but I needed THIS particular oral surgeon to witness and exam my mouth and cheeks so I complied with her marching orders.

“The Boy in the Plastic Bubble”????

As I traveled into New York City from Queens, New York, my mind raced after the worst possible medical situations and it concluded that I might be turning into the “Boy in the Plastic Bubble.”  My oral surgeon was certainly surprised by my appearance but he played it down thinking I simply had another infection. He began giving me stronger antibiotics partly to help me get better and, I suppose, also to cover his ass, in case I did not.  Over the next few days, however, he again had to keep changing antibiotics because one hurt my stomach more than the other.  This abdominal pain was also a new feeling as it felt like my stomach was RED-HOT and “agitated” such that anything I ate or drank triggered a “punch in the gut-like” pain.  For what it’s worth, I was also beginning to experience noticeable knee pain and complete lethargy would “come over me” unpredictably and make my legs feel like they weighed 1,000 pounds, just as it had when I was a kid at some fun family dinners.

I had no idea what these other symptoms had to do with the wisdom teeth extraction but something strange was going on inside my body yet it was only visibly manifesting itself in the form of embarrassing inflammation of my cheek on the left side of my face.  I had an “Invisible Illness” with a “tell” of occasionally swollen cheeks.  If the Internet had existed at the time, my desperate Web MD searches might have convinced me I was really a fish or a bird only disguised as a mammal.  Regardless, I again trusted this oral surgeon’s simple/logical explanation mostly because I wanted to, as his explanation was less frightening than mine, which was fueled by my fertile imagination which had begun to conjure up a rare incurable immune system disease which would require me to wear a space suit to communicate with friends like in the TV-movie, “The Boy in the Plastic Bubble.”  Eventually, however, after the swelling of my left cheeks had completely resolved, we figured I had been on enough cumulative antibiotic medications to stave off even the most resistant of oral infections so within a few weeks, which I thought was our last meeting, I finally received a clean bill of “dental” health.

Wisdom Teeth Inflammation, Take 3 – Time to see a Medical Doctor

A few weeks after my clean bill of health from the oral surgeon and feeling like Frank Sinatra only to soon be publicly exposed as Jerry Lewis, I woke up on a Sunday morning and the right side of my face had swelled just as it had when I initially had the wisdom teeth surgery.  This was now 3-4 MONTHS since the surgery and it was the 2nd time since the actual wisdom teeth surgery that my cheeks had gotten so inflamed.  First it was the left side and now it was the right side.  My new friend, “inflammation,” wasn’t ready to leave yet.  When I visited my oral surgeon this time he thought I was either a Vulcan or one of his colleagues was playing a practical joke on him in the spirit of the classic TV show “M*A*S*H” when “Hawkeye” and “Trapper” secretly shortened the length of their prank victim’s pants making him think he was somehow still growing as an adult getting taller each week and then 2-weeks later taking-in his pant’s waist size making him think he was also gaining weight at a precipitous pace.

Feeling like a “Leper” for the 1st Time

This top-notch New York City oral surgeon now didn’t know how to treat me and that’s when my LONG, costly, depressing and lonely journey to being diagnosed with Crohn’s Disease first officially “left the station.”  It’s also when I first remember feeling like a medical “leper” as the look in the eyes of this most erudite and confident of oral surgeons exposed his genuine concern for me.  I left his office with some rote physician referrals which ranged from other oral surgeons to gastroenterologists to “TMJ” specialists but the sadness in his eyes made me want to call the United States Centers for Disease Control and Prevention (“CDC”) as I feared I had contracted some rare disease which they kept track of to protect the health of the world population to report my condition!  But at least I didn’t have to take any more antibiotics because at this point I was spending just as much time in the bathroom as I did out of it due to the painful irritation from the different drugs.

Finding Hope amongst Heartless Physicians

This unpredictable pattern of my cheeks alternately suddenly swelling from one side of my face to the other remarkably continued for several more months puzzling every “specialist” who professed at our initial consultation how he or she would soon diagnose my problem and return a sense of normalcy to my life. The list of specialists included other oral surgeons, neurologists, infectious disease doctors and rheumatologists.  Some specialties seemed inappropriate for my overall situation but each came with trusted recommendations whether they were to treat a particular symptom or to diagnose and treat the underlying cause of my medical problem.

In furtherance of their respective specialty, each doctor prescribed one drug or another to help achieve their hypothesized results.  But their well-intentioned theories all proved wrong and the drugs were either unsuccessful or they only ramped up the “angry gut” pain I had initially attributed to ingesting the broad array of antibiotics for treatment of my oral surgery woes.  Additionally, upon failing to help me, practically every doctor subtly shifted the blame TO ME as if I were responsible for not complying with their projected diagnoses and treatment theories.  Only a few compassionate physicians made sure they personally expressed their sincere regret that they couldn’t help me and then genuinely wished me luck on my Diagnosis Journey.

Reflecting upon the “cold” encounters with the heartless physicians, I remember frequently going to bed at night terrified and crying about my apparent hopeless situation and the inimical professionals I might have to rely upon for hope moving forward.  But I quickly grew tired of feeling like a “victim” because it just wasn’t in my personality and I’d be damned if I let disinterested 3rd parties make me feel that way.  I decided to think positively about the often inhumane experience of being brought to one selfish medical professional after another who cared more about their “diagnostic batting average” than my health.  So I focused on the kind physicians who did everything they could to help me and then tried to comfort me when they were unable to do so.  There was a lesson to be learned during this part of the Journey which helped me move forward.  That is, no matter how bleak a situation, you could always find hope, “in the strangest of places, if you look at it right.” [Lyrics to the song, "Scarlet Begonias," written by Robert Hunter and Jerry Garcia.]

Hiding in Bathrooms to bear down on Pain is not Conducive to Friendships

At this point I also began experiencing unpredictable periods of “explosive” diarrhea (sorry to be so graphic but, it is, what it is) and the pain in my stomach had transformed into more of an intense cramping pain which would often escalate to unprecedented levels making me cry with absolute fright until I was able to have a bowel movement.  Going to the bathroom with the expectation of having a bowel movement was now like anticipating “giving birth” and the labor pains were these cramping increasingly severe abdominal pains which made me feel as vulnerable and uncomfortable as a person could feel.

The pain was significantly relieved once I had a bowel movement but sometimes it took up to Ninety (90) minutes for the food and gas to pass through certain areas of my intestines or small bowel.  During that unbelievably painful time period I would hide in bathroom stalls to “bear down” on the pain so nobody would see me cry or make the strange faces which naturally evolved from trying to silence such terrifying suffering.  When it happened at friend’s houses, they began to think I was a weirdo and the invites to hang out came less and less frequently.  My Diagnosis Journey was now affecting my friendships and that caused me emotional pain similar in intensity to the physical pain which kept me hiding out in bathroom stalls. I was a physical and mental wreck.

The Patient Empowerment of Pain

Despite many very knowledgeable doctors concluding there was nothing wrong with me, the tear-inducing, absolutely terrifying and embarrassing bowel movement pain never stopped.  In fact, it actually got worse as I took the different medications prescribed by each aforementioned specialist who tried to help me.  I never distinguished between the possible effects of different foods because everything I ate seemed to wind up causing the bowel movement pain so at times I stopped eating completely for a day or two out of fear of the eventuality of pain.  I simply needed a rest from worrying about where I would be when that pain began.  But then I would remember the alternating inflammation of my cheeks and I gave up controlling the pain through my diet.

It just never crossed my mind that my diet could trigger the “labor pains” especially since every doctor I saw focused on my immune system and the worst of the abdominal pains seemed to occur during or just after a round of antibiotics or other prescribed drugs.  Notwithstanding the bizarre habits I had acquired as a result of worrying about the pain, the severity of the pain actually reinforced my will to continue on my Diagnosis Journey.  It did the same for my parents as I cannot imagine the emotional pain they felt when they repeatedly saw me on the bathroom floor in the fetal position communicating via primal screams with nothing they could do to help me.

Having learned from the often humiliating experiences with the doctors who tried to blame me for my medical troubles when their respective theories proved incorrect, the vivid memories of lying on bathroom floors crawled up into the fetal position in such severe pain always rushed to the front of my mind each time a doctor subsequently tried to blame me for my medical troubles or they questioned my veracity or intentions.  I dreaded that pain but ironically it had empowered me with the confidence and determination to handle whatever adversity came my way going forward during my quest to find out what was wrong with me.

Systemic Symptoms Grow & The Plot Thickens

My list of symptoms now grew to include vision issues, unexplained rashes all over my body, arthritis-like joint pain and more frequent bouts of extreme fatigue.  I also noticed that when my seasonal hay fever allergies kicked in, all of its symptoms intensified, especially the fatigue. This reminded me of my childhood allergy experiences but there was no feasible answer then, and I hadn’t yet found one now.  More importantly, my body’s response to my allergies now included a gastrointestinal response such that my bowels would over-produce gas and cause my gut to become so “distended” to the point where I felt like the “Michelin Man.”

This “Michelin Man” symptom sounds funny but it was HORRIFICALLY PAINFUL as the gas either stayed inside me and triggered those severe cramping pains or it was forced out of me with such pressure that it felt as if I was passing gas AND basketballs such that my rectum became so sore I could barely walk.  It was also obviously socially embarrassing and I recall on more than several occasions my Dad having to come to my job to pick me up and drive me home because the slightest movements triggered these painful and embarrassing symptoms.  I hid in my office or cubicle until he arrived.

It’s easy to share these symptoms on my Blog thanks to the proliferation of health care social media (“hcsm”) and the positive effect it has had on global awareness of my disease.  To that end, if my Diagnosis Journey took place in 2014, I am sure I would have met people on Twitter, Facebook or Google+ who had experienced similar symptoms and I then would have quickly recognized my symptoms as being related to some type of inflammatory bowel disease.  But in 1984/1985, I couldn’t articulate these symptoms without sounding like a hypochondriac at best; and insane at worst.

So my parents and I had to “take a step back” and approach the overall situation logically and consider the unsuccessful theories of the various specialists and the increasing gastrointestinal symptoms and their severity in light of the wisdom teeth debacle.  After careful consideration, we concluded that the wisdom teeth surgery may have been a diagnostic diversion even though it obviously triggered my underlying medical problem.  Therefore, we decided to focus on the gastrointestinal symptoms and locate an experienced gastroenterologist.  We also decided that, if necessary, he or she would coordinate my interactions with any other medical specialists.  Finally, a “Plan” was developing and an answer had to be in sight.  But which Gastroenterologist should we see?

The Cutting-Edge Gastroenterologist & a Hyperbaric Chamber

My Mom and Dad asked everyone they knew who’d ever had an encounter with a GI Doctor (i.e., a gastroenterologist) to recommend someone for me.  This included friends, and friends of friends, who suffered from ulcers, spastic colons or hemorrhoids.   They also solicited the recommendations of my general doctor (or primary care physician) who by now was familiar with my various bizarre symptoms and likely systemic problem or disease. Despite our methodical approach, it was still difficult to find a gastroenterologist who would take me on as a patient when all of my problems seemed to start as a result of having all four (4) wisdom teeth removed at the same time. After a few false starts and filling out several voluminous Patient History forms for doctors I would never see again, the winner of the “Who Gets to Put their Finger up my Ass” Sweepstakes was a Long Island, New York doctor who had the personality of a handball but the apparent credentials of a genius GI Doctor.

During our first consultation in his office, I noticed Genius GI Doctor practically ignored me and paid most of his attention to my parents.  I guess he figured they’d be paying his bills but I thought he crossed a line when he began to rely on my Mom’s well-intentioned animated depiction of where on my abdomen it hurt when I ate certain foods.  As soon as she finished talking and gesticulating with her arms to make her point, I firmly, but respectfully, told the doctor to please address ME, since I was his patient.  I didn’t blame my Mom because she was just so stressed and trying to bring this GI Doctor up-to-speed ASAP but despite my adult-like respectful edict, I could tell Genius GI Doctor thought I belonged at the “kids table” even though I was 21 or 22 years old and frightened by all that was happening to MY body.

We spent almost an hour in his office telling the doctor all about how the wisdom teeth surgery and the subsequent alternating cheek inflammations seemed to start my medical problems and they had subsequently become “systemic” and always involved my abdomen, in one way or another. He listened patiently enough to my parents to justify his steep Consultation Fee but I‘m not so sure he “heard” them and he certainly ignored me because without even examining me his first conclusion was that I needed a few sessions in a “hyperbaric chamber” where more pressurized and pure oxygen might help repair my compromised immune system.  He was emphatic about the hyperbaric chamber but it felt as if he didn’t believe me when I told him how painful the abdominal cramps were because I couldn’t imagine a hyperbaric chamber addressing this problem which was slowly ruining my life.  I carefully conveyed this concern to him but he was looking “through me” and just waiting for me to stop talking before he reiterated his focus on the immediate immune system ramifications of the wisdom teeth surgery and the need for me to start hyperbaric sessions as a key successful treatment of my medical problems.

Dealing with a Stubborn, Arrogant Physician and Worried Parents

We were given a few days to digest the GI doctor’s treatment recommendation so my parents and I took advantage of the time to research the medical usages of hyperbaric chambers.  In short, it was our understanding that hyperbaric chambers were then being used as an option of last resort to help serious drug addicts or alcoholics who’s abusive lifestyles (through needle-sharing, bottle-sharing and the hard life of living out on the street) had ruined their immune systems to the point where they could not heal from the mildest of illnesses or medical stresses.  THAT was not me and I did not appreciate being looked at in such a way.  Genius GI Doctor must have concluded there was something “sketchy” about me based on the bizarre alternating cheek inflammations arising from the wisdom teeth surgery.  What was worse, Genius GI Doctor, due to his impressive credentials which came along with his “conclusion,” had now planted some doubt about me in my parents’ heads and I had to reverse that to keep them on my side as I desperately needed their support on my “Diagnosis Journey.”

 Standing Up for Myself with a Doubting Doctor

I did not like this GI doctor but I didn’t have the heart to ask my Mom and Dad to spend more time and money finding me another GI doctor. Therefore, we returned for the follow-up appointment after a week in which I suffered through several severe bathroom “episodes” and I told the doctor there would be no hyperbaric chamber because I was not a drug addict or an alcoholic and I resented him classifying me as such.   He looked at my parents confidently assuming they would agree with him that I was in denial but they backed me 100%.  Further, I asked Genius GI Doctor if there were any blood tests I could take to immediately prove I wasn’t a drug addict or an alcoholic because I wanted to move on to finding out what was wrong with me.

I had “partied” a bit in my college days and like all young adults graduating college at the time, I had experimented at different times with “social drugs” but I was a collegiate athlete still in excellent physical condition, that is, except for my “bad stomach” and feisty cheeks  Whenever I thought about getting “high” with my friends as a way to escape for just a few hours from my medical problems and thus far unsuccessful Diagnosis Journey, the possibility of that cramping, severe pain in my gut scared me so much, I had even abstained from “social” alcohol and stopped drinking soda fearing either would aggravate my stomach and cause that terrible cramping pain.  I guess you could say I was “Scared Straight” – from even drinking soda!

Genius GI Doctor took me up on my offer but with obvious skepticism and he immediately administered a variety of expensive blood tests that day in his office.  It seemed as if I was being administered a Lie Detector Test of sorts since in the doctor’s opinion my bizarre symptoms did not seem to match up with my verbal account of the story.  A few days later he called me with concern that some of my blood counts were abnormally too high and some were too low which typically meant I was fighting some type of infection or inflammation and/or I might also be bleeding inside my bowel.  The topic of drugs and alcohol never came up again and to this day I have never heard the term “hyperbaric chamber” mentioned by a physician.  I knew my body and was confident I was healthy and didn’t belong in a hyperbaric chamber but I wanted those blood tests performed on me more to boost my parent’s confidence in me after all the doubt Genius GI Doctor had possibly instilled in them when he attacked my character without scientific cause.  After all, without my parents’ support in 1984 and 1985 during my Diagnosis Journey, I might have suffered for several more YEARS before being properly diagnosed with Severe Crohn’s Disease.

Right Diagnostic Tests but Wrong Conclusions

Genius GI Doctor’s concerns about my blood work prompted him to perform a few abdominal-focused diagnostic tests on me.  These tests included a GI Series, an Endoscopy and a Colonoscopy.  He seemed to believe me now, but then again, he still had the personality of a handball so it was hard to tell what he was truly thinking.  Nevertheless, he was clearly “covering all bases” to hopefully provide an explanation for my symptoms and I was glad someone was being so genuinely interested and comprehensive about my medical problems.  Unfortunately, and for reasons I will never understand, all of these tests were essentially negative besides showing minor “sores” and “abrasions” in my small bowel and duodenum.

Granted, these abdominal conditions required medical attention and medication but my blood work seemed to indicate much more serious conditions but these traditionally accurate tests concluded there was nothing substantially wrong with my bowels or intestines which would explain my continued complaints of a severe cramping pain, unpredictable diarrhea, joint pain and extreme fatigue.   Looking back, I also never had a fever or significant weight loss and I think every doctor who examined me put too much emphasis on their absence as symptoms almost as if they were integral ingredients to a serious systemic gastrointestinal diagnosis.

Based on my understanding of the typical symptoms of Crohn’s Disease, fever, weight loss and loss of appetite are usually a part of “flare-ups” but in 30 years with Crohn’s Disease, I have rarely had any of them accompany a flare-up.  Much about my symptoms or absence of symptoms was atypical for common gastrointestinal diagnoses beginning with the recurrent cheek inflammations to the lack of significant weight loss as I somehow kept up my athletic build.  I was often too tired to exercise but when I was able to work-out or play ball, I lost myself in it as a coping mechanism for all I was going through.  That made me look “fit” and not nearly as sick as I honestly portrayed myself to doctors.

I remember feeling unlucky that these tests did not portray the realities of my day-to-day struggles but then it just didn’t feel right to wish for serious symptoms to be revealed by these tests.  Who knows, I could have been diagnosed with Colon Cancer if the right symptoms appeared during these diagnostic tests.   It was a strange feeling hoping for medical corroboration of my symptoms and simultaneously praying nothing too serious showed up on my tests.  On the one hand, I’d feel lucky if my complaints were validated but on the other, I’d be devastated if I were told I had some incurable disease.   They say not to wish for things because you might just get them and that’s the mental approach I tried to maintain.  After all, who wants symptoms of an incurable disease?  However, nothing in my life would change without medical evidence which explained my symptoms.

“It’s All in Your Head” – Hello Shrink

Nevertheless, my parents and I were devastated when these invasive diagnostic tests were negative and wondered if they were simply administered at a time when whatever disease I had was inactive. The GI Doctor did not share my optimistic approach and was forced to conclude I was physically fine.  Sensing my grave disappointment, my parents initiated a meeting with Genius GI Doctor to determine what I could do next to get to the bottom of what was wrong with me.  They had seen me scream and cry on the bathroom floor too many times to question my pursuit for an answer and treatment so they went into this meeting thinking there must be a GI specialist I could see who could perform different tests.  I felt the same way.

Feeling Hopeless, Losing my Composure & Perceptive Parents

Perhaps Genius GI Doctor needed to witness one of my “flare-ups” to be similarly motivated because during the meeting he all but called me a liar and rather confidently concluded I was someone who craved the attention of being sick and he did not appreciate me wasting his time.  His suggested solution, which this time he directed at my parents as if I was actually sitting at that kid’s table, was for me to see a Psychologist. He was all but calling me a bullshit artist in front of my parents and I started to cry in his office.  The combination of my feeling hopeless and hating this doctor and all the previous doctors who doubted me, overwhelmed me and I completely lost my composure.

There is nothing more frustrating than feeling such severe palpable pain and experiencing obvious abnormal medical symptoms like the recurring cheek inflammation episodes only to be told it is “all in your head.”  Through my tears in the office, I could tell my parents were now also put off by the arrogant style of Genius GI Doctor.  Despite the underwhelming results of the objective diagnostic tests, they were not satisfied with his “Psychologist conclusion” after all the bathroom “episodes” and extreme lethargy periods they had seen me go through.  They also recognized how my Diagnosis Journey had begun to compromise some of my most prized friendships yet I never flinched in my pursuit of an answer.  Since I was a kid, my friends meant the world to me so I guess my parents were quite perceptive as to the physical and emotional toll my medical problems were taking on me because I would never jeopardize certain friendships, but I had done exactly that.

As my Dad was speechless masking his utter frustration and empathy for me, my Mom politely inquired about additional different diagnostic tests but she was abruptly shut down by Genius GI Doctor before she finished her sentence.  He did, however, add that he was certainly available in the future if my symptoms changed or if I had a medical emergency.

We left his office shocked by the reality of my medical symptoms yet the inability for them to be diagnosed.  While prefacing their opinion that they did not at all agree with Genius GI Doctor, my parents suggested I give deep thought to seeing a Psychologist because I was going through a great deal and could certainly use the professional support.  I had zero interest in seeing a Mental Doctor when my physical problems were getting so severe that I was afraid to leave my house for fear of having that severe, cramping abdominal pain at work, in school, on the train, etc.  Besides, I wondered aloud rhetorically, “How could a Psychologist help me with that?”

My parents had no response but I could tell I needed to exhaust this option if only to show my parents, and biggest supporters, that I was willing to try anything to get to the cause of my medical problems.  We also agreed that I would soon see another highly recommended infectious disease doctor but that experience proved more futile than the one with the Genius GI Doctor as he didn’t take me seriously at all and practically laughed me out of his office telling me I should be thankful I don’t have problems which required his care. All I could think about when we left his office was whether this infectious disease doctor would appreciate having his sick, petrified child treated in the same imperious and condescending manner?

Wasting Time with a Psychologist

I chose a local psychologist so that it wouldn’t dramatically affect my life schedule. Our weekly appointments were held in an office attached to his home which had a separate entrance.  Initially, he appeared to be a nice, kind older gentleman who treated me with respect.  But from day one, I could tell he was hell-bent on blaming my “Type A” personality for causing my abdominal problems.  To support that initial “diagnosis,” he would often ask me leading questions regarding how I resolved disputes or coped with stress and he somehow always found a way to connect my assertive personality with the stomach pain I was experiencing.  Some days I would come in explaining how I spent the entire previous night lying on the bathroom floor in agony with severe abdominal cramps.  As I spoke, he listened intently simultaneously jotting down his observations but no matter what he wrote, his verbal conclusion was always that my intense personality was to blame for my medical problems.  If I didn’t have the confidence of my convictions and wasn’t empowered by the fresh memory of my pain to laugh at his poorly veiled attempt to manipulate me, I might have left his office thinking I was to blame for all I had been through the past year or eighteen (18) months.

Passive-Aggressive Manipulation by a Psychologist

With clock-like precision as if he had planned it from the beginning of the week’s session, a bell would ring signifying the end of the fifty (50) minute session just as I was ready to respond to his insulting and condescending insights. I had heard of the term, “passive-aggressive,” but never knew what it meant until my dealings with this Psychologist. I even tried to look up its definition in a dictionary but it was clearly one of those things you had to experience to understand.  In that regard, I understood it quite clearly ever since I met this man and I despised being treated in such a manner by a professional who has the ability to shape minds and influence a person’s decision-making especially after all I had been through since the wisdom teeth surgery.

Accordingly, in what I believe was our last “professional” session, I started the session by “respectfully” accusing him of manipulating me in a passive-aggressive manner to make me think me and my personality were the cause of my medical problems just because they had not yet been substantiated by medical doctors. I paid special attention to my “tone” as I wanted to come across as calm and confident as opposed to the patronizing manner in which he spoke to me.  I also did not want to appear desperate even though I had no idea what I was going to do after I “fired” him.

I also asked him if he thought my “Type A” personality had caused my cheeks to get abnormally inflamed after the wisdom teeth surgery and subsequently recur  on different sides of my face, weeks and months later.  I never raised my voice or became disrespectful to him in any way.  I stayed true to my intentions and hoped he respected my frankness such that he’d finally address me “man-to-man.”  Unfortunately, what I thought was a courageous gesture by me was treated as if I was making polite, irrelevant inquires about his pet.  He just looked up from his notes with the same deceptive smile he had worn since the first day we met and ignored my direct questions.  When he started to speak he asked me why I felt the need to question him as if the content of my question was of no concern to him.

Until we meet again Mr. Manipulating Psychologist

I told him I wanted answers to my questions since they addressed the exact reason for my presence in his office.  I was not interested in playing some  psycho-babble game with him as I was seeking answers to my underlying medical problems while he was manipulating my now desperate Diagnosis Journey for money.  Finally, his deliberate silence and then patronizing tone and phony smile were too much for me to bear and I firmly, and again, respectfully, demanded answers to my questions, but this time in a louder tone.  Naturally, time ran out again as his “session clock” alarm bell went off.  Without skipping a beat, he closed the notebook in which he had been recording his observations about me, stood up and with a smile on his face said something to the effect of, “I think that was a very productive session and next session we’ll pick it up just where we left it.”

Since my efforts to get direct answers from him were a complete waste of time, my frustration got the better of me and I got closer to him to ensure he LISTENED to everything I had to say.  He was a little intimidated by the rage evidently showing from the way in which I had confronted him and I told him I did not respect or like him from the get-go because before he even met me he had concluded that my medical problems were “in my head” or the result of my intense personality, when at that time, he knew nothing about me.  He just smiled in an effort to diffuse the situation and said something like, “We’ll pick that up as well next time.”  We sure did, as you will shortly see.

Taking A Break from the Diagnosis Journey

Longer story short, I took a break from seeing the Shrink after that last encounter because I was tired of his condescending attitude and made-up mind about me.  I also thought it was a waste of my time and money, both of which I desperately needed to continue my Diagnosis Journey.  I had kept my parents in the loop the entire time so they acknowledged my good faith attempt at seeking Psychological Counseling.  In retrospect, it was just the WRONG Psychologist because I have since seen many friends and patients benefit tremendously from the wonderful effects of Counseling but it/he just didn’t work for me.  So I decided to focus the next few weeks on my job and tried to live as if I no longer had these medical problems.  Naturally, my impression of a Pollyanna didn’t last long but at least I was able to focus on my job and my Diagnosis Journey was temporarily placed on hold.  I feared the repercussions, but then again, I was having “flare-ups” while actively engaged in the Diagnosis Journey so I didn’t see the the difference except the prioritizing of my job which had been “second chair” to my medical problems for quite some time and I needed to solidify my professional position. I also thought maybe it was time to let things “come to me” for a change instead of chasing the wrong doctors or taking the wrong medications.

How my Diagnosis Journey affected my Professional Life

It was a normal work day, late afternoon at my first significant job in New York City and a colleague’s birthday was being celebrated.  I didn’t know most of these people very well because while I had worked there a little less than eighteen (18) months, I kept to myself because my medical problems had created what others might have thought was “special treatment” so I wanted to “keep my distance” and not reveal too much information since I was still in the dark about it.  But the office fostered a nice atmosphere and I felt like I belonged and was anxious to see where the opportunity led.  My medical problems had wreaked havoc on my professional life in terms of the time off I needed to get well or to manage the increasing systemic symptoms. But the owners of this business liked me and understood my unsettled situation and they even let me work from home when I needed to.  As long as I completed my work on time, no questions were asked.  I was very appreciative of their understanding and when I was able to work without medical interruptions, I came early, left late and worked hard. I also made sure that when I worked from home, I always accomplished significantly more than what was expected of me. But even under those flexible circumstances, I knew I was low on the totem pole and any additional extended absences or the continued need for the flexibility to work from home would force them to terminate me due to the precedent it set and the subsequent likely unwanted similar requests from other employees.

Flavored Popcorn leads to my Diagnosis Destination

After a productive day of work, I put my medical troubles away and decided to partake in this colleague’s birthday festivities.  I remember I nursed a beer while I tried to be very careful about what I ate for fear of initiating a “flare-up” at the office.  At the time, flavored popcorn had become quite popular so this “hip” New York City business had every popcorn flavor available.  I was never a big popcorn fan but everyone was talking about the flavored popcorn and with a little prodding from a pretty co-worker who was my only true friend there, I sampled a few different flavors to “fit in” and everything seemed to be fine.  Approximately 20 minutes after I had eaten the first popcorn flavor, I began to feel an extremely painful sensation I had never experienced before as it felt like my intestines were “twisted.” It mimicked the severe cramping pain I was familiar with so I was able to smile in-between cramps but when the cramps were at full strength there was no facial expression I knew of to mask my pain or fear because if the pain got any worse I thought I would pass out or my stomach would burst. In another 10 or 15 minutes, the severity of the pain quickly intensified even more as I imagine the other popcorn flavors were similarly affecting my intestines so I quickly found the office bathroom and prayed for a bowel movement so that the pain would ease or leave my system completely.  Unfortunately, it didn’t work like that and devising that genius plan was the last thing I remembered happening at the office party.

Being Hospitalized directly from an Office Party is not a good Career Move

Apparently, I was rushed by ambulance to the closest hospital and after the Office Manager had contacted “my loved ones,” my out-of-her-mind in fear Mom called good old Genius GI Doctor begging for his help and he was kind enough to quickly contact a close GI colleague of his who had privileges at the hospital and he made sure I was well taken care of.  When my Mom explained to Genius GI Doctor what had happened, he assured her I would be fine and he also told my Mom to tell me that he wished me well.  That was nice of him.  What I do remember is being “handled” by EMT gentlemen back at the office and going in and out of consciousness.  Each time I was awake I couldn’t help but scream about the pain. It felt like my intestines were sure to explode with each successive cramp.   Thankfully they kept giving me medication for the pain and each time they did, I fell back asleep.

I imagine I was sedated and/or sleeping for 2 days or so because the pretty co-worker visited me in the hospital a few days later and she provided a blow-by-blow account of my afternoon/night at the office.  Listening to her account of my actions at this office made me cringe but I could tell by the tone in her voice that she and my co-workers were concerned about me and I had done nothing wrong.  I also had a little crush on my pretty co-worker and now it felt like the feeling was mutual.  I even joked around with her that I had been trying to get her alone so we could really talk and nothing else worked so …  Probably a cute or funny line under the proper circumstances but certainly not effective lying in a hospital bed in a basically see-through hospital gown with an “NG Tube” running through my nose into my stomach to slowly siphon out anything in my intestines.

She went on to tell me she knew I had gone to the office bathroom because I had excused myself from talking to her to go to the bathroom but she never saw me again and wondered where I was.  For some reason that jolted my memory, and with her assistance filling in some of my memory holes, I started to remember I was lying down in the bathroom for a long time and to avoid the embarrassment of another co-worker seeing me in such a compromised state, I did lock the door. But the pain became so intense that I passed out and was unresponsive each time someone tried to figure out why they couldn’t get into the bathroom.   After several people tried to use the bathroom but couldn’t, the Office Manager came over and heard NOTHING coming from the bathroom and then my pretty colleague publicly remarked she hadn’t seen me since I went to the bathroom.  It quickly became obvious that it was ME in the bathroom and I was in serious medical trouble so they broke the door down and found me passed out lying on my left side in the fetal position.

Diagnosis & Validation by a Crohn’s & Colitis Foundation (CCFA) Brochure

I had suffered an intestinal obstruction which was brought on by the popcorn.  The pain was so severe that I was heavily sedated for a few days before they could even perform various diagnostic tests to figure out why I obstructed from the popcorn.  These situations are treated much differently these days but in 1985 I was given shots of the powerful narcotic Demerol every 3 hours and I was a zombie for several days.  I also had an “NG Tube” placed into my intestines through my nose to siphon out all the fluid above the obstruction to lessen the pressure which was causing all the pain.  The hope was that the continued combination of not eating or drinking, the insertion of the NG Tube and around-the-clock intravenous steroid drugs to decrease the inflammation in my intestines would alleviate the obstruction so I could tolerate drinking various foul-tasting radio-graphic fluids so the doctors could perform the necessary diagnostic tests.  This process took 5 or 6 days and then a day or so later my new GI Doctor came into my room and told me and my parents that I had a classic case of an incurable, autoimmune, Inflammatory Bowel Disease (“IBD”) called Crohn’s.

Each word of the diagnosis was shocking and scary especially since we couldn’t even spell the name of disease and had never heard of it.  Then the doctor handed my Mom and I a pamphlet published by the CCFA which explained the various symptoms of Crohn’s Disease and it was like reading a description of all I had experienced the past 18 months.  From the inability to fight inflammation to the unpredictable exhaustion to the intolerable severe cramping pain during a flare-up, I strangely felt validated by this very scary description of a disease I now had to contend with for the rest of my life.  Also, as it turned out, eating popcorn is one of the most dangerous things to do with Crohn’s Disease because the intestines can’t digest it and as a result they become painfully inflamed.  To that end, I have never eaten Popcorn since that day almost 30 years ago.

But just as my Mom and I had finished discussing the amazing similarity between the CCFA pamphlet description of Crohn’s Disease symptoms and the symptoms I had as a child and then for the past 18 months as an adult, the hospital room phone rang.  Amazingly, it was the Shrink.

“Do you see what you did to yourself now?”

The Shrink had heard I was rushed to the hospital by ambulance and at first expressed his sincere concern and then made sure I was alright.  I was friendly and appreciative of his call.  But after the pleasantries were concluded and he had confirmed I was okay, he asked rather sternly, “Do you see what you did to yourself now?”  Having just been validated by the CCFA brochure and been diagnosed by every conceivable diagnostic test with an incurable, painful, autoimmune disease called Crohn’s, I was INCENSED and I ripped the phone out of the hospital room wall.

After I recovered for a few weeks and had read all I could about Crohn’s Disease and IBD, I made another appointment to see the Shrink.  His office treated me like a returning patient coming home to the sage prophet but little did they know I was returning to get a REFUND of all the money I paid to see him as he had no business treating patients with Crohn’s Disease because he obviously knew nothing about it.  The day of the appointment came and I calmly greeted him and sat down.  He went directly into his mellow passive-aggressive attack on me and I firmly told him to “Shut up.  I want ALL my money back for each of the sessions you ‘counseled’ me on because you are unqualified to counsel people who have Crohn’s Disease or any other type of Inflammatory Bowel Disease.”

He contemplated my statement as if it were a suggestion and told me it’s good to express my thoughts even if they are antagonistic.  I reiterated I wasn’t kidding and I told him that I would report him to his State Licensing Board if he did not refund all of my money within 30 days and/or if I heard he took on another Crohn’s Disease or IBD case without legitimate proof that he took some type of official continuing education class about treating such patients.  I stood up to leave and he went to shake my hand but I refused and left.  My complete refund arrived in my mail box two (2) weeks later.

Thanks Mom and Dad.  :)

Autoimmune & Rare Disease “Diagnosis Journey”

Live the Journey

Leave a CommentIt starts with a Primary Care Physician

Based on the structure of the Healthcare System in the United States, for example, patients experiencing abnormal or unusual symptoms usually start their quest for a diagnosis with their “1st level” primary care physician to initiate various “baseline” diagnostic tests and to hopefully obtain medical advice as to their next move which they hope brings them closer to the correct diagnosis.  But quickly diagnosing even the most common autoimmune illnesses such as *Inflammatory Bowel Disease (“IBD”) (*with Crohn’s Disease being an IBD), Rheumatoid Arthritis, Fibromyalgia, Lupus, Multiple Sclerosis, Psoriasis and Type 1 Diabetes is usually very difficult because they are typically beyond the purview and conventional practice of the primary care physician and thus the path to follow for diagnosis and treatment is as amorphous as Matthew McConaughey’s career trajectory which led to his 2014 Best Actor Oscar.  For these reasons, I have always envisioned such a patient as having to embark upon a “Diagnosis Journey.”

In the event a 1st level general health practitioner is unable to correctly diagnosis a patient but nevertheless suspects a medical problem, they typically refer them to a physician who specializes in the area of the patient’s concern.   This would be a good start to the Patient Diagnosis Journey because such a logical pursuit tends to result in an efficient path toward the correct treatment.  But, sometimes, due to the complex and multifaceted makeup of autoimmune and rare diseases or because the patient resides in a rural community and the local doctor is perceived as an expert on all things medical and is “frequently wrong, but never in doubt,” 1st level primary care physicians misdiagnose the patient or they miss the symptoms altogether.  In either instance, the patient’s symptoms could intensify and further confuse the situation such that valuable time and unnecessary suffering ensues and so begins a possibly very difficult Patient Diagnosis Journey.

Word-of-Mouth Referrals to Specialists fuel the Diagnosis Journey

Since there are approximately 50 MILLION Americans affected by autoimmune diseases (Source: American Autoimmune Related Diseases Association – AARDA) and oftentimes these diseases are not diagnosed by the patient’s internist or primary care physician, these patients are eventually properly diagnosed by initiating a Diagnosis Journey usually beginning with referrals to disease specialists based on word-of-mouth recommendations from friends who have some experience with similar health problems or symptoms.  But just as demonstrated above with the patient’s experience with a primary care physician, inaccurate information can make the Diagnosis Journey longer and more costly.  Therefore, in addition to the possibly painful and lethal symptoms of an undetected autoimmune or rare disease, the patient is saddled with the  added burden of efficiently processing a great deal of information from different sources for the purpose of making an informed decision as to the most prolific Diagnosis Journey.  

Real Life Limitations and the Costs of a Diagnosis Journey

The speed with which a patient gets properly diagnosed with an autoimmune or rare disease primarily depends upon the pervasive or serious nature of the current detectable symptoms.  Unless they are debilitating, these symptoms logically affect the patient’s determination and motivation to seek proper treatment.  But access to appropriate specialty physicians, a patient’s financial means and having the available time to initiate the pursuit of a diagnosis are also determinative of the difficulty, duration and “cost” of the Patient Diagnosis Journey.  Moreover, the “cost” of the Patient Diagnosis Journey isn’t only financial as overwhelming feelings of frustration, loneliness and hopelessness can easily be triggered after being doubted and rejected by educated health care professionals who due to a lack of scientific evidence or medical precedent conclude “it’s all in your mind.” The effect of doctors doubting or rejecting legitimate Diagnosis Journey patient symptoms as indicative of an autoimmune or rare disease can also influence the most supportive of close friends and loving family members. The resulting feelings of frustration, loneliness and hopelessness could have severe and possibly long-term psychological effects such as depression and anxiety, each of which can become primary medical problems in addition to the underlying autoimmune or rare disease.  

Significance of the “Journey”

In my next Blog Post I’m sharing my 1984/1985 Diagnosis Journey which led me to Crohn’s Disease so that people facing similar doubters as the ones I encountered will better understand how the “Journey” is just as important as the “Destination” [or "Diagnosis"] when seeking a correct diagnosis and treatment for an illness whose palpable and often debilitating symptoms no one seems to acknowledge except them.  While my Diagnosis Journey lasted only 1-2 years, it involved so many twists and turns and bizarre recurring painful symptoms that I spent much of the time curled up in the fetal position on bathroom floors trying to fend off the fright of abdominal cramps which were as intense as labor pains. 

Mine was a demeaning and embarrassing experience yet with the support of others I learned a great deal about myself and developed the discipline to always remain focused on the “Journey” because I was repeatedly made to believe by seemingly credible health care professionals that there may never be a “Destination” and I just couldn’t, and wouldn’t, accept that. 

The confidence I developed in listening to my body during that grueling Diagnosis Journey has served me well both in life and in dealing with what has unfortunately turned out to be a 30-year case of Severe Crohn’s Disease.  Had I never obtained a diagnosis or reached my “Destination,” at least I would have known I did all I could to help myself.  Ironically, that determination, confidence and self-reliance are the patient “tools” I most rely upon when my Crohn’s Disease tests my resolve and will to live. 

Sadly, failing to obtain a diagnosis is a realistic outcome of a Diagnosis Journey because sometimes the most discernible and unbearable patient symptoms fail to warrant a formal diagnosis as not every group of symptoms is classified as a disease or the diagnosis for a certain combination of symptoms is so rare that it becomes elusive and then meaningless since no significant research is performed to help develop effective treatments.  This is all the more reason to ALWAYS focus on the Journey of a Diagnosis Journey and not on its Destination, i.e., a formal Diagnosis, because the life lessons of the Journey could provide the strength and knowledge required to live a happy and fulfilling life despite such challenging symptoms, whether diagnosed or not.     

***If you have an interesting, instructive or inspirational Diagnosis Journey story, PLEASE leave a Comment and share it so others can benefit from itThe more we share these “Diagnosis Journey” stories the easier it will be for others to pursue answers and treatments for their ailments.

Laughter and Affection vs. Oxycodone and Percocet

Its_a_Mad,_Mad,_Mad,_Mad_World_Trailer2

“It’s a Mad, Mad, Mad, Mad World” - Produced by Metro-Goldwyn-Mayer and United Artists

Roommates & Debilitating Surgeries at the Same Time

 It’s been a while since I’ve updated my Blog as I’m recuperating from February 3, 2014 Full Hip Replacement Surgery.  My recuperation became more “challenging” when my 78-year-old Mom (who is also my roommate) had Double Knee Replacement Surgery but then experienced some complications which kept her in the hospital much longer than expected.  As a result, our recoveries have now overlapped such that in our respective “immobile” physical states we not only can’t help each other but we can’t even help ourselves.  Our temporary vulnerable medical conditions have left us wholly dependent on the kindness of neighbors, friends and relatives for the simplest of human needs. Thankfully, these people have “stepped up” tremendously and shown us what it truly means to care about someone. When they leave to understandably attend to their own lives and families, only the sound of “House of Cards” playing on our big-screen living room television confirms we are not stranded on a deserted island.  That’s assuming, of course, Netflix is not available in the most desolate of places.

 “It’s a Mad, Mad, Mad, Mad …” House in West Orange, New Jersey

Sometimes when I yearn for perspective to help understand our temporary but otherwise seemingly daily hopeless and painful respective plights, I am thankfully reminded of the closing “Prison Hospital Scene” from the hilarious 1963 classic movie,  “It’s a Mad, Mad, Mad, Mad World.”

The movie, which was a “family-favorite” I remember watching with neighbors, aunts, uncles and cousins, is about the madcap “planes, trains and automobiles” pursuit of $350,000 in stolen cash by a colorful, Seinfeld-like, self-loathing but very funny group of deceitful strangers who must trust each other in order to follow the dying words of a criminal character played by the immortal Jimmy Durante as he literally “kicks the bucket” and proclaims a treasure is buried under a “Big W.”  The all-star ensemble cast features the stars of that time period including Edie Adams, Milton Berle, Sid Caesar, Buddy Hackett, Ethel Merman, Mickey Rooney, Phil Silvers and Jonathan Winters Amazingly, these epic performances are matched by the outlandish or often subtle cameo appearances by other Comedy Greats such as Jerry Lewis, Don Knotts, Jack Benny, Peter Falk, The Three Stooges and Carl Reiner.

Thanks to Wikipedia and IMDB, here’s that Prison Hospital Scene we think about to laugh together when we feel forlorn and our lassitude unceremoniously blends one day into the next as we wait for our scarred bodies to heal:

The dejected men, now visibly immobile in a prison hospital in bandages, casts and immobilizing devices of all kinds, start to blame one another for their predicament – especially “Culpeper” (played by Spencer Tracy) – for seizing the money. “Captain T. G. Culpeper” of the Santa Rosita Police Department had been patiently working on this case for 15 years hoping to solve it and retire with honor when anything but was coming his way.

As a retort to the finger-pointing, “Culpeper” (Spencer Tracy) verbally points out to the others that all of their prison sentences may be lighter because he will probably take most of the blame in court. The  now disgraced but contemplative ex-Captain “Culpeper” then dejectedly adds that, “perhaps in 10 or 20 years, I hope that there will be something that I can laugh about.”

Then “Benjy” (a Las Vegas bound motorist played by Buddy Hackett who happened to stop his car when he saw the Jimmy Durante highway car crash and then joined the chase toward the “Big W” after hearing Durante’s dying words about the hidden treasure) throws his banana peel toward a wastebasket, but it misses and lands on the floor, moments before the relentlessly nagging and self-righteous “Mrs. Marcus” (the over-bearing mother-in-law of timid Milton Berle’s character played by Ethel Merman) enters, flanked by “Monica” (the similarly annoying nagging wife of Sid Caesar’s character played by Edie Adams) and “Emeline Marcus-Finch” (the wife of Milton Berle’s henpecked character played by Dorothy Provine), and vociferously starts scolding all of the hospitalized men involved with the madcap adventure. 

However, in mid-sentence, “Mrs. Marcus” (Ethel Merman) slips on the banana peel, falls flat on her back, and is hurriedly carried off on a gurney while all the other injured men, and eventually “Culpepper” (Spencer Tracy), laugh hysterically.

Roll Credits.

The Takeaway

Laughter and knowing people care about you haven’t yet supplanted Oxycodone and Percocet as Painkillers but they are damn close. :)   Moreover, if I learned anything from all those years watching “It’s a Mad, Mad, Mad, Mad World” with my family, it’s that the next “belly laugh” could be just around the corner.

Leave a Comment Button

Meet a Member of the Crohn’s Disease Warrior Patrol

Ashlee Adams January 25 2014

 Please meet the newest Member of the Crohn’s Disease Warrior Patrol (the “CDWP“), Ashlee Adams of GetBetter.com.

If YOU would like a **Tax-Deductible $25.00 CDWP t-shirt, please visit the CDWP website or Tweet me @HospitalPatient.  Thank you.

You can view pictures of other CDWP Members at the below social media websites – where everyone looks as pretty as Ashlee :)   :

Flickr

Pinterest

** The Crohn’s Disease Warrior Patrol, Inc. (the “CDWP”) is a 501 (c) 3 Non-Profit Charitable Organization dedicated to Raising Awareness about the potential severity of Crohn’s Disease and Ulcerative Colitis.

When the Chronic Patient becomes the Medical Caretaker

Mom Pats Jan 2 2014

California Dreamin’ on such a winter’s day

Since being “systemically disabled” in June, 2010, as a result of my 30-year bout with the autoimmune and incurable Crohn’s Disease, I relocated from Santa Monica, California (via The Mayo Clinic in Rochester, MN), where I led an exciting life of being an executive/entrepreneur in the entertainment industry, to West Orange, New Jersey, to live with my 78-year old Mom so that I could be close to my life-long friends and have immediate access to the doctors who were most familiar with my complex medical difficulties.  Like all chronically ill people, I needed “support” and for me that meant easy access to reliable and interested friends and family. At 50 years of age, I was reluctant to give up my life as a productive professional person but my health had become too unpredictable and my participation in projects became more of a potential liability than the asset it had been for many years. My doctors had recommended this a few years prior but I never felt more alive than when I lived in Santa Monica, CA and I had spent way too much time lying on my back in hospitals up and down the East Coast to suddenly cash out just when I was finally running/biking on a beach IN Southern California listening to The Eagles rather than dreaming about it in an Emergency Room during a blistering winter.

Role Reversal – Patient becomes Caretaker

I was depressed by this radical change but it had to be embraced or else my mental rejection of a situation I could not change would eventually manifest itself as a physical problem and I had too many of them already to be so cavalier towards the emergence of a new one.  As I eased into my new life back in New Jersey, the main activity of which was initially repeated long hospitalizations or going to and from doctor appointments and diagnostic tests, my Mom again became my primary Medical Caretaker and she also graciously opened up her beautiful home to me.

I grew up in Howard Beach, Queens in a great middle-class community where the everyday norm was playing after-school pick-up hoops, stickball and aggressive touch-football on concrete side streets running pass patterns designed to break open because of “screens” set by parked cars.  Our home was nice but I spent most of my time outside playing ball.  When my folks elected to downgrade a bit so they wouldn’t have to be responsible for all the maintenance required of a traditional homeowner, they moved into a luxurious condo in New Jersey never thinking space would have to be made for one of their adult children to move back home with them.

So it was heart-warming to be able to turn to the person you love most so he or she can help take care of you but this time my medical issues were much more serious and the natural passage of “time” required continual effort and almost 24/7 careful attention which my Mom could no longer consistently provide due to her own battles with the undefeated, undisputed champion of all-time, Father Time.  As a result, and despite my then disabling, weak and unpredictable medical condition, our roles toward one another often necessarily became reversed and I, the Patient, had to become a Medical Caretaker, to my Mom.

A Formidable Foe – “Father Time”

My Mom is in generally good health and she looks (and acts) many years younger than her 78 year-old birth certificate would prove (e.g., see her above modeling the New England Patriots sweatshirt which she’s worn for MY superstitious purposes as we’ve watched their games together this 2013 season and she has apparently “caught” whatever it is which made me adopt this team as my own in and around 1975 when I was 12 years-old) but “older age” is unbeaten in terms of causing inescapable mental and physical fallout which in my Mom’s case is two (2) inoperable knees, some vision and dental issues and occasional, unpredictable “forgetfulness.”  Her knee and weak surrounding muscle issues are further complicated due to her contracting “Polio” as a child when she lost considerable control over her Quadriceps muscles.

While she always accompanied me to important doctor appointments, I began to drive her to hers and I also started hanging around the Exam Room to make sure the information delivered by the doctor was not at all “diluted” when my Mom subsequently communicated it to me and my sisters.   After all, she’s been through SO MUCH medical strife as a Parent- and Wife- Caretaker that if I were her, I’m sure I would also try and “tune out” these relatively minor medical challenges.

The Power of Perspective

To facilitate the transition from independent active patient to reactive caretaker and to ease any understandable depression complications associated with my aforementioned relocation and career change, I relied upon “Perspective” to most accurately “frame” my situation.  In that regard, I looked at the time I would spend with my Mom as a blessing of sorts in that I would be among the lucky few who got to spend such quality time with their parent at what typically would be such a busy time in an adult child’s life that it never even would be possible.  As I’d never give my Mom grandchildren due to my deliberate reluctance to intimately partner with a woman in my seemingly never-ending medically challenging and thus financially unpredictable life, it felt good to be able to give my Mom exactly what she needs, when she needed it.  We have also bonded on another level, that is, Patient-to-Patient.  But as a chronic patient, I know all too well how vulnerable it can feel to be so dependent on another person and also how you can feel like a burden to others.

My friends and several relatives have NEVER made me feel that way but I feel bad when caring for my illness creates responsibilities for other people.  Then again, I also know how wonderful it feels to know that people care enough about me to want to help me.  With that in mind, I chose to do for my Mom what many others had, and have, been doing for me.  However, it was, and is, challenging because my patient-needs have not gone away and in some instances they’ve actually become more complicated.  Nevertheless, I felt I had the opportunity to do for my Mom what she had done for me on SO MANY occasions and coming “full circle” in that manner feels special even though it is oftentimes physically, mentally and emotionally exhausting.

Maintaining Objectivity as a Caretaker is not easy

Next month my Mom is finally having Double Knee Replacement Surgery.  Her knees are in such bad condition and prone to cause her to fall unexpectedly that she often must so slowly and carefully navigate the ground surface in a shopping center parking lot like she’s trying to ascertain the presence of land mines or IEDs in a battle-torn region of Afghanistan. In such instances I must remember she’s not my Mom but rather a patient who,  unfortunately, but understandably, must struggle with the simplest and almost instinctive body response of walking in spite of terribly damaged knees which could unexpectedly cave in on her even due to the slightest change in the slope of the parking lot cement.  Maintaining that separation of love as a son, from the responsibility as a Caretaker, is absolutely essential to helping her because there’s no room for emotion when being relied upon as a Caretaker.  But just like I cannot watch a New England Patriots football game without worrying about a fumble on every play, it’s not so easy to eliminate emotion when you are acting as a loved one’s Caretaker.

Diffusing the Frustration and identifying what is Really Important

As stated above, it can be physically, mentally and emotionally exhausting when acting as a Caretaker especially after being a Patient because anticipating patient needs when you know what they are can be a self-fulfilling prophecy as you try to stay one step ahead so that worst patient fears are not actualized.  But when you throw into the equation that the Patient in this case is my Mom, a few new “levels” are added to our relationship of 50 years.  I think these new relationship levels are naturally created to bear the brunt of our mutual petty frustrations with each other which stem from our new respective roles as Caretaker and Patient because these trivial issues never affect how much we care about each other.  You see, my Mom is still my primary Caretaker and I am still also a chronic Patient so the unpredictable mutuality of our roles often causes arguments which we both know have zero effect on our love for each other but they do cause stress and that’s never good when you also live in the same household.  Thankfully these new levels of our relationship serve as “shock absorbers” for what can be hour-to-hour and day-to-day arguments about leaving too many lights on, using the coffee-maker incorrectly, trying to clear the dinner table while I am still eating and my Mom’s strange affinity and tolerance for watching “The Chris Matthews Show” while we eat dinner and he interviews interesting people, but never lets them talk.

Taking 5 steps back to take 2 healthy steps forward to Paris, France

As also generally mentioned above, in January, 2014, my Mom is having her Double Knee Replacement Surgery but in February, 2014, I am having Left Hip Replacement Surgery.  Habitually, we are certainly an “Odd Couple” with my “Oscar” to her “Felix” and due to the overlap in our respective rehabilitation periods, we might need a 3rd party to help us during any post-operative conflicting physical rehabilitation occasions.  But even more importantly, we both need something positive to look forward to in order to yet again take 5 medical steps backwards in order to take 2 steps forward in lives hopefully without pain or seriously disabling medical problems since we’ve both been through an inordinate amount of life’s medical adversities.  Poignantly, I think we have just the right “prescription” to celebrate moving forward because in June, 2014, I will be speaking at a healthcare conference  called “Doctors 2.0 and You” in Paris, France, and I will be taking my Mom along, to what is her favorite city in the world.  It is the city which she frequently shared with my Dad, her husband of over 50 years who passed away in 2008, and also with her daughters.

Because of my Mom’s recent unreliable knees and her understandable reluctance to undergo two (2) physically and mentally demanding knee operations at the same time, she hasn’t been able to travel to Paris, France in a few years.  But her circumstances changed and just as the doctors predicted, she wound up begging for such an involved surgery and demanding rehabilitation regiment. While “it seldom turns out the way it does in the song,”** by bringing her to Paris I anticipate both of us experiencing the natural healing powers sometimes found in Life “once in a while ….  in the strangest of places, if you look at it right.** To that end, I am confident it will ease the burdens we’ve shared in helping each other as Caretaker and Patient.  After all, Life should be about living, making and sharing memories and not about getting caught up in all that comes attached, and is required of you, when you are given the label of “Patient” or “Caretaker.”

leave a  comment  BUTTON

**   These are excerpts of lyrics to The Grateful Dead song, “Scarlet Begonias,” written by Jerry Garcia and Robert Hunter.

Crohn’s Disease 30-year Caretaker Interview – My Mom

MAW PPP Dec 21 2012

As I start to embark upon shooting a Documentary Film about Crohn’s Disease for the purposes of raising awareness of its possible potential severity and pervasive nature, I thought about how different patients must perceive it and that I must capture that to tell all sides of the Crohn’s story.  However, I think I have that angle covered by planning to interview a variety of such patients from all over the world. But then it dawned on me that “Caretakers” of people with Crohn’s Disease might have valuable insights to also contribute to the challenging experience of battling this autoimmune and incurable disease.  In that regard, their perspective would surely add another much-needed dimension to the story.

Why MY Mom for the Crohn’s Disease Documentary?

Since I’m pretty much stuck at home awaiting a February, 2014 Hip Replacement Surgery and my chronic lung inflammatory problem, which causes a sudden onset of severe shortness of breath, is making my ability to function as my typical ebullient self as predictable as the playing status of Green Bay Packers’ Quarterback Aaron Rodgers, I figured I’d start at home – with my MOM.

Over the thirty (30) years I’ve been struggling with Crohn’s Disease there have been a variety of “Caretakers” from lithe and understanding girlfriends to concerned Aunts and Uncles to extremely selfless close friends but my Mom was there at the beginning and she’s now seen me become “systemically disabled” by Crohn’s now that I live with her.  Prior to living with her, she certainly knew of all my struggles and was always there to comfort and help me in any way possible, but it wasn’t until 2010 when I had to move back to her home in New Jersey from gorgeous Santa Monica, California, when my body finally betrayed me, taking away much of my independence in the process.

It’s possible things will get better for me in the future with the advent of new treatments and drugs but it’s no longer just the Crohn’s Disease which fuels my inability to function independently.  As my “go-to” gastroenterologist in New York City wrote when filling out some of the numerous disability claim forms, I’m “systemically disabled” due to the numerous manifestations of an incurable, aggressive autoimmune disease [and likely by some of the drugs and treatments I had to ingest/endure to try to keep the disease at-bay for the past 30 years so that my entire small bowel was not compromised].  The best vantage point to this apparent deterioration of my quality of life or at least to the radical changes I face as a result of having Crohn’s Disease for 30 years is that of my Mom’s simply because she lives with me and witnesses it 1st hand.

How I cope with a murky medical future

At times, I find it very difficult to accept these Crohn’s-induced limits on both me and my lifestyle but just like one of those Chinese handcuffs, the more I resist; the more pervasive the limits become.  To escape the madness of these Chinese handcuffs, some jokingly suggest to “embrace the suckage;” while others lugubriously wallow in the uncontrolled unraveling of the life they once had.  Based on my experience, I think the former is the healthiest mindset which is needed to ward off the inescapable thoughts of the latter which seem to pop up in daydreams, nightmares and in Facebook when glancing at happy slice-of-life perspectives of all the people you’ve ever come across in your life.  Thankfully, I’ve been able to keep my own challenges from affecting that wonderful feeling of sharing in the realization of a friend’s hopes and dreams as depicted on Facebook.  I never want to lose that ability to be happy for the people I care about and by keeping busy with these various projects I am able to live with some semblance of purpose and that drives me.

More specifically, utilizing this almost Zen-like mindset to thwart off thoughts which have absolutely no productive place in my life, I’ve chosen to stay busy and document my Crohn’s journey in the hope that what I discover helps other people facing the same predicament; whether it be because of Crohn’s Disease, Ulcerative Colitis, Cancer, Rheumatoid Arthritis, Fibromyalgia or any other disabling medical problem which they had no part in precipitating.   Forming the Charitable Foundation, the “Crohn’s Disease Warrior Patrol” [“CDWP”] was a big step in my journey and that has led to the CDWP producing this Documentary.

I hope you enjoy this “conversational” interview with my Mom and you discover something positive out of our discourse which helps you in your battle.  I intend to interview other Caretakers for the Documentary and if you have any suggestions given my aforementioned intentions, please email me, tweet me or leave me a Comment below.

Ain’t to Proud to Beg

Lastly, it takes a great deal of time and effort to coordinate the Patient-to-Patient Support Consultations afforded by the CDWP just as it takes a great deal of time for me and the CDWP to produce and share helpful Video content with people all over the world fighting similar battles.  In that regard, if you are in the appropriate financial position and are so inclined to make a tax-deducible Donation or to purchase a tax-deductible $25.00 CDWP t-shirt, please visit our website at www.TheCDWP.org.   Thank you.

Leave A Comment BUTTON

Police Confrontation b/c of “Invisible Illness” Handicap Placard

MAW PPP Dec 4 2012

This is a real life example of how NOT TO HANDLE Police Confrontations when they are about your “Invisible Illness” Handicapped Parking Placard.  I am embarrassed by how dangerously I handled this situation but it is my hope the experience will help other people living with “Invisible Illnesses” such as Crohn’s Disease, Inflammatory Bowel Disease (IBD), Cancer, Rheumatoid Arthritis, Fibromyalgia, etc.

When you have an “Invisible Illness” like Crohn’s Disease, people will eventually question your handicapped or disabled status whether it be in a social, professional or “community” setting, that is, if you ever reach that “severe spectrum” of the disease such that you are disabled and require the assistance of a Handicap Parking Placard.  Unfortunately, I’ve been dealing with this for quite some time but the other day I was actually antagonized about it by a POLICE OFFICER during a bizarre local Traffic Stop.  My respectful indignation almost got me KILLED and I hope others learn from my mistake.  For that purpose, I have detailed my experience in the Video below.  Please feel free to share your comments, good or bad, as I believe this is an issue those with “Invisible Illnesses” must be aware of going forward.  Thanks.

leave a  comment  BUTTON