Patient-centric concerns re: NJ’s Medicinal Marijuana Program

4 of the 8 Medicinal Marijuana Product Strains offered by my dispensary.

1-4 of the 8 Medicinal Marijuana Product Strains offered by my New Jersey dispensary.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Part 3 of 4-part Series chronicling my current experience as a Crohn’s Disease patient participating in New Jersey’s Medicinal Marijuana Program (NJMMP)

Reasonable Need for NJMMP Patient-centric revisions have made this a 4-part Series

      I began this Series detailing the extensive, rather long, often even onerous and inherently expensive NJMMP registration process. In Part 2 I shared my very positive experience interacting with the NJMMP when a representative with the authority to solve my problem was kind enough to phone me in response to an email I had sent only the previous weekend to the general email address listed on the NJMMP website.  Following the suggestions of this very kind NJMMP representative, I resolved my registration problem and was then registered for the NJMMP at the much lower  biennial registration fee of $20.00 (instead of $200.00) in consideration of, and after I provided required proof of, my fixed and limited income from receiving Social Security Disability benefits. I received my NJMMP ID Card shortly thereafter and initially decided to conclude the NJMMP Series in Part 3 after visiting my Alternative Treatment Center (ATC) [a/k/a my dispensary], purchasing Product then medicating with it and sharing my assessment of how effectively it met my medical needs.

      For that purpose, I kept my medical needs simple and only sought the anti-inflammatory benefits from a product high in CBDs and very low in THC ingredients so that medicating did not include feelings of “euphoria” or “being stoned.” Then, after listening intently to my description of the various painful inflammatory problems I encounter as a result of 31 years battling the incurable, autoimmune Inflammatory Bowel Disease, namely, Crohn’s Disease, my dispensary adviser “explained” the 8 different available marijuana Product strains by attaching flavor, mood and medicinal characteristics to each, much the same way a Seascapes Painter might associate personality traits to specific colors.  I know, this is very esoteric and pretty strange but when it’s told to you in a professional manner through intermittent morsels of medical jargon and the dispensary advisor maintains a straight face throughout his sales pitch, well, you gotta go with the flow.

      But when he hands you a professionally-printed Menu of the 8 different marijuana Product strains and it also includes the aforementioned arcane descriptive attributes (please see a picture of the Menu below), then you realize you are no longer driving and it’s time to sit back, listen and learn.  Maybe.  But given my communicated medical needs, my very well-informed dispensary adviser sold me the only “High CBD” strain carried by the dispensary.  But no matter the dose or medicating mechanism, I got “stoned” each and every time I tried the “High CBD” Product and that made me wonder about the NJMMP and whether or not enough parts of it reflect the patient perspective in terms of reasonably foreseeable patient medical needs. So I did some research and consulted with some friends very knowledgeable in the business of medical marijuana and this necessitated me adding a Part-4 to conclude the Series.

4 of the 8 Medicinal Marijuana Product Strains offered by my dispensary.

5-8  of the remaining 8 Medicinal Marijuana Product Strains offered by my New Jersey dispensary.

The Allure of NOT Getting Stoned from Medical Marijuana

      Many years ago I had gotten “stoned” or “high” during my adolescent phase of recreational experimentation and I never enjoyed the associated paranoia and loss of control over my personality.  Sure, smoking pot enhanced all of my senses, or at least it made me feel that way, and I actually enjoyed this laser-focused superpower especially when playing full-court hoops, while listening to The Grateful Dead and Steely Dan and during a few other more private activities.  But smoking pot quickly bored me because it made me feel “stupid” even if I was laughing hysterically during the transformation from leader-to-follower and extrovert-to-White Castle-devotee. A few friends of mine never felt that way and marijuana remained in their lives to this day as they became, and continue to be, prolific, respected and wealthy members of society. Notwithstanding their continued marijuana usage and real life successes, my dull experiences “getting stoned” left such an indelible negative impression on me that I was never tempted to revisit the marijuana experience and I found other sources to which to turn for attaining that almost instantaneous relaxed state.

      Therefore, any medical use of marijuana which gets ME “stoned” is a non-starter as I believe MY “stoned” or “high” marijuana personality compromises and completely negates my ability to function as a responsible adult.  I truly believe that marijuana may work wonderfully for others, and I have seen it be a beneficial source of relaxation and/or creativity for some of my most beloved, normal, well-accomplished and respected friends, but FOR ME, “getting stoned” won’t work as a medical solution.  However, non-euphoric “High CBD” Product makes medical marijuana extremely appealing to me because soothing the systemic painful inflammation running ramped in my body via extra-intestinal manifestations of Crohn’s Disease would substantially increase the quality of my life and I would no longer be physically dependent on narcotic prescription painkillers.  Prescription painkillers and alternative pain management modalities such as acupuncture have always been my only effective defenses against severely painful inflammatory problems due to my inability to take ANY anti-inflammatory drugs because of their intestinal-obstructive harsh effects on my gastrointestinal tract.

Why scrutinize New Jersey’s well-established Medicinal Marijuana Program?

      After purchasing “High CBD” Product from my dispensary and sampling it in different amounts and via different medicating mechanisms, I “got stoned” each time.  While I am permanently disabled due to the damage done by 31 years of Severe Crohn’s Disease, I am still an active and effective Patient Advocate whenever I am physically well enough to do so and I’m also the Guardian of my 83-year-old Mom assuming responsibilities for which “being stoned” is an unacceptable state-of-mind and objectively it is demonstrative of a lack of “readiness” to help her whenever I am required to do so.  This “unintended consequence” of “getting stoned” after medicating with Product marketed and sold in my New Jersey dispensary as being a “High CBD” strain provided the impetus for my extensive CBD research which included consulting with friends and acquaintances from all over the country, each of whom is intimately familiar with medicinal marijuana. My consultations included in-depth personal conversations with a pharmacist friend who works at a dispensary in a different state.

       In the end, and in order to personally continue forward with seeking medical benefits from marijuana in New Jersey or to advocate that others do so, I had to understand the answer as to why I got “stoned” from “High CBD” New Jersey product when its ratio of CBD-to-THC ingredient percentages seemed to mimic those of successful non-euphoric “High CBD” strains dispensed in other states.  I concluded that I am either hypersensitive to THC, such that the otherwise small and inactive amount of THC present in the New Jersey “High CBD” Product was enough to affect ME when it would not have any euphoric effects on others, or the “High CBD” Product I had purchased in the NJMMP was improperly labeled, devoid of reliable ingredient consistency and/or indicative of other fundamental flaws in the NJMMP which could only be identified and remedied after a patient-centric analysis.  By no means do I intend to portray the NJMMP in a negative light but my “High CBD” “stoned” experience made me think about similar “unintended consequences” potentially happening to seniors or to children looking to medical marijuana for relief.  So I decided to take a more comprehensive look at the NJMMP to identify any problematic areas and highlight opportunities for it to more safely and effectively meet patient needs.

Former Democratic Governor Jon Corzine passed the NJ Medicinal Marijuana Act, but Republican Governor Chris Christie designed and implemented the NJMMP

      Accordingly, Parts 3 and 4 of this Series are intended to offer constructive “patient perspective” suggestions re: the NJMMP and to pose some provocative questions, the honest answers to which will undoubtedly require several patient-centric modifications to the NJMMP.  These patient-driven updates are necessary to more reasonably meet the patient needs identified by the 2010 marijuana de-criminalization Act, i.e., the New Jersey Compassionate Use Medical Marijuana Act (the “Act”), because these reasonably foreseeable patient needs were not truly considered when the NJMMP was designed and implemented in 2010 under the stewardship of anti-medical-marijuana Republican New Jersey Governor, Chris Christie.  More specifically, Governor Christie inherited this implementation task from his predecessor, former Democratic New Jersey Governor, Jon Corzine, who signed into law this politically-sensitive medicinal marijuana legislation literally on his last full-time day as Governor.  Governor Christie was then tasked with heading the design and implementation of the NJMMP even though he had been, and continues to be, an outspoken opponent of the legalization of medical marijuana viewing any such laws as pretexts for, or indirect paths toward, the legalization of recreational marijuana.

      With the advantage of 20/20 hindsight, it is clear Governor Christie prioritized the NJMMP with more concern about staving off what he publicly perceived to be a backdoor to legalizing recreational marijuana when he should have also focused on creating a NJMMP which reasonably addressed the foreseeable needs of patients diagnosed and suffering from the Act’s specifically enumerated debilitating medical conditions.  While it is somewhat understandable for the initial design and implementation of the NJMMP to focus on the establishment of firm governmental controls and well-managed state registration and dispensary processes given the controversial, politically-charged subject matter encompassed by the NJMMP, the corresponding rules and regulations are rigid, restrictive and lack any patient-friendly overtures.

At least 25 States currently permit Medicinal Marijuana.

It’s time for a New Jersey Medicinal Marijuana Program (NJMMP) to better serve its Patients

      It is now 6 years later, and based on subsequent medical findings and a plethora of magnificent medical marijuana success stories, including children battling epileptic seizures and patients of all ages finding relief from incurable Inflammatory Bowel Diseases,  more and more states are legalizing medical marijuana initiatives and an increasing number of these state efforts reflect a genuine attempt to dutifully service the legitimate patient needs which underlie the medicinal need for marijuana despite marijuana being illegal under federal law. All things considered, it is now therefore timely for the NJMMP to be re-analyzed from a patient perspective with the intent of modifying the NJMMP so that it is robust and capable of meeting reasonably foreseeable and practical patient needs and so that it can be compared favorably with similar efforts of other states, just like legislative programs covering other cutting-edge issues of our times such as privacy, drones, the heroin epidemic, the minimum wage and cyber-protection.

Specific Product Strains and their CBD/THC ingredient concentrations

      By looking at the aforementioned and posted “Menu,” the Cannatonic “High CBD” strain I purchased seems to have a total of approximately 7% CBD and 0.314% THC, which would appear to be a ratio similar to other successful CBD strains which produce no euphoric or “stoned” effect.  I was told at the dispensary that the 5.955% of THCA, or tetrahydrocannabinol acid, is a cannabis compound that unlike THC, is a non-psychoactive cannabinoid.  However, I have subsequently read conflicting information about the possible conversion of THCA to THC when it is heated and decarboxylation occurs or possibly even when it is heated during vaporization (or heated while smoking the marijuana) thus increasing the Product strain’s amount of THC thereby enhancing its psychoactive effects.  This inconsistency of ingredient concentrations might explain why I got “stoned” from the “High CBD” Cannatonic strain no matter the dose or medicating delivery mechanism.  The THC ingredients should have been INACTIVE or MUTED in a strain promoted and sold as “High CBD” Product.  Additionally, there also appears to be several different laboratory methods for measuring THC potency in strains of medicinal marijuana as the THCA conversion process and the resulting increased amounts of THC are interpreted and calculated differently by different laboratories.

      During my first and currently only visit to a NJ dispensary, I also purchased small amounts of 2 other Product strains with ingredient percentage ratios higher in THC than the aforementioned “High CBD” strain (i.e., “Cannatonic”) despite my aversion to “getting high” or “being stoned”  (this calculation does not count the amount of THCA which my post-dispensary research indicates might be extremely relevant). These strains are listed on the aforementioned “Menu” as “Blueberry #32” and “AK-47.”  “Blueberry 32” seems to have only 0.031% CBDA but no CBDs and 0.238% THC and 13.83% THCA.  However, I have also read about a similar decarboxylation effect on CBDA which converts it to CBD which would in effect render “BlueBerry 32” slightly less potent in THC than as advertised.  The “AK-47” strain is significantly more THC-potent because it has 1.269% THC, 17.73% THCA and approximately 0.096 % CBD (talking into account the CBDA decarboxylation conversion factor).

 “Medical Measurables” such as milligrams (mg) are needed to measure Product ingredient Concentration Consistencies

     Notwithstanding the foregoing Product ingredient specifics, how reliable are these relative percentages in terms of consistent measurements of ingredient concentrations such as that of THC and THCA? I have read conflicting theories on the most medically measurable labeling techniques and the absence of measurable units such as milligrams (mg), for example, prevents New Jersey dispensaries from devising dosing guidelines for the specific debilitating medical conditions the NJMMP treats and for the different degrees of severity within each specific disease.  After discussing this aspect of the NJMMP with a pharmacist friend working at a dispensary in a different state, I was impressed by his state’s medical marijuana initiative when I learned that in his state he is able to, for example, consult with a Crohn’s Disease patient and then based upon the severity of the case recommend “4 mgs of Product Strain, 2 times a day,” based on the dose protocols established in his state or in his dispensary.  The medical marijuana is then labeled much like direction labels on prescription drugs.  He is only able to do that because the Product in his state is measured by a medically measurable unit, i.e., a milligrams (mg).  Due to the existence of the above-referenced different laboratory ingredient measurement techniques and different application philosophies, it seems crucial for the NJMMP to utilize Product measurement units which can be reasonably relied upon to create and measure consistent Product ingredient concentrations which then can be used to create disease-specific dosing guidelines.

After Getting Stoned” from “vaping” Trace Amounts of “High CBD” Product, did my Scientific Experiment run askew?

        Due to my need and preference to remain clear-headed on a 24/7 basis, I knew I would rarely use these 2 other product strains other than late-at-night and only in instances of severe pain.  But more realistically, I purchased them to create comparison reference points for the non-euphoric “High CBD” strain which the dispensary adviser strongly recommended as the strain which most accurately meets my clearly articulated medical needs. Looking back a few weeks to the time I visited the dispensary, it is possible the dispensary adviser mentioned the possibility of minor “euphoric effects” resulting from the “High CBD” strain, and thus if I am hypersensitive to THC that could also explain my “stoner” experiences, but I do recall him specifically stating that I “would not get stoned.” However, the degree to which marijuana affects each person is most assuredly personalized, varying and dependent on numerous factors so any scientific expectations are unrealistic whether they are made as sales representations or depended upon by buyers like me UNLESS the marijuana is consumed via medically measurable edible products which are not readily available in the NJMMP although they recently were added to the Program and are in the process of being manufactured.

      In any event, however, I figured I could at least learn about the accuracy of the NJMMP’s product labeling and gain a practical understanding of the different strains’ varying effects on me by sampling strains which were CERTAIN to get me “stoned” and comparing those experiences with sampling the “High CBD” strain which was REASONABLY CERTAIN NOT to get me “stoned.”  But my “research” plans ran askew after I got “stoned” from the “High CBD” strain the very first time, and every time thereafter, no matter the dose.  But now I know this could be explained by the strain containing significantly more THC due to the THCA conversion factor or the “High CBD” Product is properly labeled and I am getting “stoned” from this strain due to my THC-hypersensitivity.

      As I mentioned at the beginning of this Post, my experience thus far with the NJMMP has raised many questions which I believe must be addressed from the perspective of whether or not the NJMMP meets patient needs.  In light of the possible “High CBD” improper Product labeling regarding THC concentration, I think it is fair to say that all bets are off as to the NJMMP meeting that standard. That said, does the inexact THC concentration in the “High CBD” Product and/or me consistently getting “stoned” from it mean my experiment is futile?  Since Edibles are innately more consistent in terms of dose and potency, is there knowledge to be gained from making edible products from the “High CBD” strain? Is my scientific experiment OVER or can I still learn a great deal about the NJMMP by sampling the different Product strains and creating Edible Product?  In this regard, to quote the sage philosopher John “Bluto” Blutarsky from the humorous precedent-setting significant movie, “Animal House:”

“What? Over? Did you say ‘over’? Nothing is over until we decide it is! Was it over when the Germans bombed Pearl Harbor? Hell no!”  

Final Part 4 of this Series details the many benefits of adding Edible Products to the NJMMP. Part 4 also includes discussion of a Web mechanism for patients to be able to access NJ’s 33+ Product strains and converse with one another in a secure manner to share experiences regarding their usage of the different Product Strains and to discuss specific dosing, etc.  The current stigma associated with the medical legitimacy of the NJMMP is also addressed and suggestions are offered to attract more mainstream physicians to the NJMMP. Part 4 is expected to be posted on Monday, July 18, 2016.

Please leave your comment here, good or bad. I only ask that it be constructive. Thank you.

Please leave your comment here, good or bad. I only ask that it be constructive. Thank you.

Crohn’s Disease Walt Disney World Make-A-Wish GRANTED!

PLEASE share this wonderful story with every Crohn’s Disease patient or Crohn’s patient family member you know because it is nothing BUT INSPIRING and revealing of the extraordinary resiliency of a 15-years-old girl bravely battling the pervasive and serious medical challenges posed by Crohn’s Disease with the love and support of her family.

Utica, New York local TV station WKTV aired this piece produced by Rachael Murphy (@RMurphyWKTV) about a 15-years-old Utica, NY girl Mia DeFazio who’s been battling Crohn’s Disease for the past six years.  This video segment captures the real-life often extraordinary challenges presented by Crohn’s Disease while it also reveals the strength and character of this resilient 15-year-old as she somehow manages to prevent recurrent hospitalizations for Crohn’s from muting the otherwise joyful experiences of her typical teenage life while she instinctively recognizes the importance of the love and support she receives from her family by including them in her Walt Disney World Make-A-Wish dream come true.

Produced and written by Rachel Murphy for WKTV (Utica, NY)       @RMurphyWKTV

UTICA, N.Y. — A 15-year-old Utica girl, who is battling a life-threatening illness, will have her dreams come true after the Make-A-Wish of Central New York granted her wish to visit Walt Disney World.

Mia DeFazio seems like a typical teenage girl. She likes watching Disney movies, she enjoys painting and she loves the boy band One Direction.

But for the last six years she’s been fighting Crohn’s Disease, a life-threatening chronic inflammatory condition of the gastrointestinal tract that has no known cure.

She’s had several surgeries, been forced to continue schooling at home and it has changed her diet dramatically.

“Last month she was 69 pounds,” said Vanessa DeFazio, Mia’s mom. “She’s 15-years-old, 5’1 and 69 pounds is not that great.”

Her mom wanted to lift Mia’s spirits, so she surprised her by applying to the Make-A-Wish Foundation and the wish was granted. Next month Mia’s two younger siblings and her parents will all take their first vacation together to Walt Disney World.

“I was so excited, I just can’t wait,” Mia said. “I know I’m never going to forget that time. And I’m so glad my family gets to be with me.”

The locally-owned business Tallman’s Tires and Auto Repair donated to the foundation to help make Mia’s dream come true.

“Some children can’t do things that they want to do because they are always in the hospital,” Vanessa said. “So when people want to support us and help us out it’s amazing.”

“The company’s generous support throughout the year affords them the opportunity to be a part of this very special wish experience,” said Development Director Christine Corbett, in a written press release. “The average cost of a wish is $12,000 and we’re on target this year to grant 90 wishes. We rely on donors like Tallman’s to make wishes come true.”

Make-A-Wish Central New York recently held a surprise wish announcement party for Mia at BB Designs in New Hartford. BB Designs donated space for the announcement party, as well as a painting experience for Mia and her family.

Mia said she wanted the trip so that she could share her wish with her whole family.

“They’ve been with me through this tough time with me and I think they deserve it too,” she said.

According to Make-A-Wish Central New York, the organization grants the special wishes of kids like Mia who face life-threatening medical conditions and are between the ages of 2½ and 18 years of age. Since its inception in 1985, the chapter has granted more than 1,600 wishes throughout its 15-county region, which includes Broome, Cayuga, Chenango, Cortland, Herkimer, Jefferson, Lewis, Madison, Oneida, Onondaga, Oswego, Otsego, St. Lawrence, Tioga and Tompkins counties.

15-years-old girl Mia DeFazio from Utica, NY bravely battling the pervasive and serious medical challenges posed by Crohn’s Disease with the love and support of her family leads to Make-A-Wish dream come true at Walt Disney World. (This video aired on Utica, New York local TV station WKTV and is produced by Rachael Murphy (@RMurphyWKTV).

15-years-old girl Mia DeFazio from Utica, NY bravely battling the pervasive and serious medical challenges posed by Crohn’s Disease with the love and support of her family leads to Make-A-Wish dream come true at Walt Disney World. (This video aired on Utica, New York local TV station WKTV and is produced by Rachael Murphy (@RMurphyWKTV).

Chronic Pain Opioid Medications stigmatized as causing Addiction

June 23, 2016 – I applaud the persistent efforts of United States Surgeon General Vivek Murthy, MD mobilizing the medical community to address, assess and then fight the current Opioid Epidemic but I am gravely disappointed by the potential implications from the broad-sweeping “Addiction” conclusion he shared with the media yesterday, as depicted above.  More specifically, I fear Surgeon General Dr. Murthy’s “addiction” comments might be interpreted by attention-seeking politicians as his summary assessment of anyone who must take opioid prescription drugs and that inaccurately and unfairly stigmatizes legitimate patients seeking relief for their pain (after trying and failing at all alternative methods such as physical therapy, acupuncture, relaxation techniques, etc.).

      These patients in severe, systemic and/or chronic pain “need” narcotic anodynes to survive in the same way asthma patients “need” certain medication-infusing inhalers to breathe more comfortably.  Moreover, “addiction” is a disease which doesn’t affect every patient taking these pain-relieving drugs.  In fact, it is more accurate to describe legitimate chronic pain patients as becoming “physically dependent” on opioids prescribed by Board-Certified Pain Management Physicians.  In that regard, there is a distinct difference between “addiction” and “physical dependence;” the former a condition of great concern for which these physician pain specialists are carefully trained to recognize and the latter an expected result for a chronic patient.  It is as normal for a chronic pain patient to become physically dependent on opioids as it is for a patient battling for 20+ years with an incurable, pervasive and autoimmune illness like Crohn’s Disease to accrue significant cumulative medical bills from a variety of medical specialties such as from a gastroenterologist, rheumatologist, orthopedist, ophthalmologist, otolaryngologist, oncologist, dentist, oral surgeon, etc.

The Slippery-Slope of only using the word “Addiction” when discussing Prescription Opioids

        I also believe Surgeon General Dr. Murthy’s over-inclusive conclusion creates a dangerous slippery-slope because whenever prescription painkillers are used by healthy people just to have fun and tragedy ensues, people legitimately medically dependent on these prescription painkillers are made to pay the price when grandstanding politicians propose or enact either over-broad laws or laws which make pain management physicians think twice before deciding to open up a medical practice due to the often superfluous and redundant amount of “CYA” paperwork and public reporting required with each and every prescription written.

         It’s a situation much like that involving the current tragic wild forest fires out West if their tragic impact grew so fast that it moved the government to impose homogeneous regulations on the use of FIRE when there’s a HUGE difference between people responsibly using FIRE to keep warm and/or to cook food while others use FIRE for nefarious purposes to get their name mentioned on CNN as the felon who started a fancy-named California Forest Fire.  Does our society suddenly clamp down on everyone who has anything to do with FIRE?  No, it does not. The government simply goes after the criminal element and life goes on.

      This doesn’t happen with prescription opioid painkillers because for whatever reason politicians refuse, or are unable, to separate necessary needs and uses of these drugs from unnecessary, illegal and misuses of them.  Are we slipping into the kind of society where the reckless or criminal actions of “some” affect the freedoms of the many legitimate patients regarding their ability to responsibly obtain and use life, and reasonable lifestyle, sustaining drugs?  I hope not.

Please feel free to share your comments on this challenging issue.

Please feel free to share your comments on this challenging issue.

New Jersey Medical Marijuana Program – Part 2/3

New Jersey Medical Marijuana ID

The Medical Marijuana Evaluation Doctor Appointment

      As you may recall from the 1st part of this 3-part Series of blog posts documenting the Registration Process for Medical Marijuana in New Jersey, I had found a “Recommending Doctor” and paid $350.00 to meet with him and his staff to be Evaluated.  At that Evaluation Appointment, the doctor listened to me describe all of my Crohn’s Disease issues from gastrointestinal pain to peripheral joint/muscle issues and systemic inflammatory problems like the “Interstitial Lung Disease” I somehow picked up after a few years on the drug “Humira.”  For those with Crohn’s Disease who rely upon Humira for sheer survival, it may be best to think of me as a “cautionary tale” as someone has to get side effects. However, it is possible my lung problems are more directly related to my Crohn’s Disease but the samples from two (2) surgical lung biopsies in 2011 and 2013, respectively, have yet to be identified by pathologists in the United States.  As a result, doctors are never sure what they are treating other than some type of inflammatory lung disease which has caused so much damage to my lungs that I have a fairly significant amount of “necrotic” or dead lung tissue as a result.

      The culprit is perhaps unclear but I am hoping the anti-inflammatory attributes of Cannabis, or the Cannabinoids (CBDs), will at least prevent future flare-ups of SEVERE Shortness of Breath which are so bad that I cannot talk and breathe at the same time.  Whether I am in a flare-up or not, this lung problem also prevents me from breathing normally in any kind of altitude other than sea-level.  I don’t like the pain and life-limitations this unknown Lung Disease has placed on me. I’m hoping medical marijuana will supplant the ineffective courses of Prednisone I must endure whenever Severe Shortness of Breath reveals the fragility of my life.  I told the doctor about these aspirations.  He seemed very enthusiastic about me achieving my goals.

Doctor’s Staff is Incredibly Informative

      Before I left the Evaluation Appointment (the $350.00 cost is typical no matter whom you see to be evaluated and “recommended” for the New Jersey Medical Marijuana Program), the doctor’s staff members were very kind in answering all of my questions from administrative to actual product concerns. Since smoking and vaporizing seem to be the only induction methods presently available in New Jersey, I took note of as much of this information as possible and when I returned home began looking on the Web for ways to somehow make “Edibles” out of the Medical Marijuana I would subsequently purchase after I received the above ID Card.  To that end, I subsequently purchased a “Magical Butter Machine” on the Web for approximately $175.00.  I haven’t used it yet and likely will hold off until after I am more familiar with the potency of vaporizing medical marijuana but as far as I can tell it easily converts regular butter into marijuana-infused butter so that it can then be used to make different food products “activated” by the marijuana thus creating Edibles.

The Registration Process & waiting for “the” email from NJ MMP 

      When I left the doctor’s offices I was told I would receive an email in 4-6 weeks from the New Jersey Department of Health’s Medical Marijuana Program (“NJMMP”) which would prompt me to pay the biennial (i.e., once every 2 years) Registration Fee of $200.00 to the State of New Jersey.   After I paid it, I would then receive the aforementioned NJ Medical Marijuana ID Card (pictured above with all of my identifying information redacted) via regular mail 5-7 days later.  Upon receipt of the ID Card, I had to contact the NJMMP to let them know I received it and then I was free to make a “purchase appointment” at the Alternative Treatment Center (“ATC” or Dispensary) to which I was assigned.

The Rigors of Registering for the NJMMP are NECESSARY

      This “belt and suspenders” initiation and activation process somewhat concerned me but, the more I thought about it, I actually became impressed with the thorough process implemented in New Jersey.  The prices seemed a bit steep but the NJMMP was created to help patients like me so it’s hard to find fault with the registration process.  After all, it seems logical for a State government to require a certain amount of “comfort” when it changes the status quo to adopt NEW ways of doing things to better serve its citizens. Making medical marijuana available to sick citizens of its State who can then benefit from its various medicinal qualities is a fairly radical governmental change when you consider that marijuana is illegal and there still exists mandatory minimum penalties for non-medical possession and for the sale of marijuana.  More specifically, while medical marijuana users in NJ may possess up to two (2) ounces per month, non-medical possession of the same two (2) ounces is a felony punishable by 18 months of jail time.  Given this parallel existence of felonious marijuana possession, it’s a wonder approximately 26 States have legalized Medical Marijuana, or at least decriminalized it, as of June, 2016.

NJ’s $200.00 Biennial License Fee is only $20.00 for people receiving Social Security Disability (“SSD”) Benefits

     The NJMMP email finally arrived and I must admit I was surprised everything worked so smoothly and exactly as described by the doctor and his staff.  As I now had to pay the biennial $200.00 license fee to trigger my subsequent receipt of the NJMMP ID Card, I began to wonder if the thorough NJMMP made provisions for those patients living on a fixed income such as on SSD because paying a $200.00 Registration Fee every 2 years seemed more like a tax to me than the price to pay for simply having access to medication which apparently helps many people with my incurable and difficult to treat Crohn’s Disease when in many cases no other medications work.  Sure enough, I read the NJMMP email carefully before submitting a $200.00 payment and upon submission of certain proofs of receiving SSD, clear language indicated the biennial license fee was only $20.00 for SSD recipients.

Miscommunication w/ my Doctor’s Office Staff caused a DELAY

      Since I was declared Permanently Disabled as of July 1, 2010 and have been receiving SSD Benefits ever since, I thought $20.00 was quite fair and opted for it immediately.  This is when my NJMMP “Application” ran into some problems because the doctor’s staff had submitted my Application to the NJMMP without mentioning I was a SSD recipient.  They claimed I never mentioned it during the extensive Evaluation Appointment.  I disagreed. **They had also forgotten to give me my NJMMP “Reference Number” which should be given to the patient at the end of the Evaluation Appointment as it is necessary for the patient to access in order to act upon the NJMMP email and pay the biennial Registration Fee.   Regardless, they eventually emailed me the Reference Number and they were still willing to submit my SSD paperwork proving my SSD status but they were unable to cite a timetable for when I would receive the subsequent NJMMP email triggering the $20.00 biennial Registration Fee.  (**Truth be told, I must have asked so many questions at the Evaluation Appointment that I never gave them the opportunity to give me the “Reference Number!”  Therefore, I’m detailing this process not to blame anyone but to point out the level of specificity required by the NJMMP and a patient is better off knowing about another’s mishaps if only so they don’t repeat them.)

      The doctor’s staff  understandably sought simple SSD proof from me to hopefully expedite the process but my “Fully Favorable Social Security Disability Decision” was 11-pages long as it was a successful appeal of a denial for which I had to wait almost 3 years to get a Court Date in order to appeal. The complexities of my Crohn’s Disease case and the Judge’s ire at the previous denial resulted in a passionate, well-reasoned but rather lengthy decision and the NJMMP was seeking a simple Determination Letter of SSD Benefits. Despite their genuine best of intentions, I was concerned the doctor’s staff was not sure what to submit. But they did submit voluminous SSD paperwork on my behalf.  However, afterwards they told me they had no idea how much longer this change to being an SSD Recipient (and to a $20.00 biennial Registration Fee) had just made the NJMMP Application process.

I emailed the NJMMP & they CALLED ME

       Things have never run smoothly for me in anything I’ve done for as long as I could remember.  This revelation is just fact and I’ve always found it funny because thinking about it any other way is just not positive or productive. Notwithstanding the foregoing, and for reasons even I don’t understand, I still assume everything will work out just fine, up until it doesn’t.  But in this case I felt I had thrown too much at the doctor’s staff and began to worry they hadn’t come across a case like mine and I might be in uncharted or unnoticed territory.  Accordingly, I waited a few weeks for their efforts to effectuate progress on my behalf and then a few weeks ago on Memorial Day weekend I went back to the NJMMP website and sent an email to them explaining the above.

      Much to my surprise, I received a PHONE CALL ABOUT MY NJMMP EMAIL THE VERY NEXT DAY from someone at the NJMMP.  This woman quickly understood my problem and focused on trying to help me “prove” my NJ SSD Benefits.  She also acknowledged how diligent the doctor’s staff had been in trying to explain my SSD situation and my need to register under the $20.00 biennial Registration Fee setup.  Since my 11-page SSD Favorable Determination Letter was too complicated for the needs of the NJMMP, she then kindly suggested I create an account on the Social Security Administration (“SSA”) website and print out a ““Benefit Verification Letter.” This Letter is a “Form” easily found on the SSA website after an account is created.   This very kind woman from the NJMMP then asked me to fax this letter to her and she assured me my problems would then be solved.

SSD “Benefit Verification Letter” solves the problem

      Within 10 minutes of faxing the “Benefit Verification Letter” to the NJMMP, I received “the email” from the NJMMP but this time the biennial Registration Fee was $20.00.  I paid it and approximately 5-7 days later I received the above NJMMP ID Card in the mail. A day or two later I called my Dispensary and made a purchase appointment for the next day.  The person who took my call at the Dispensary was also very nice and indicated the first visit would probably take 30 minutes or so because they spend time educating me about the various products.  In that regard, I’m looking forward to learning all I can about how medical marijuana’s anti-inflammatory properties can help keep my Severe Crohn’s Disease and its peripheral effects under control.

    Part 3 of this 3-part Series will describe my first medical marijuana purchase visit at a New Jersey Dispensary and my early experiences with the purchased product.

What has your experience been like registering for a Medical Marijuana Program?

What has your experience been like registering for a Medical Marijuana Program?

 

New Jersey Medical Marijuana Mystery Tour

Medical Marijuana is LEGAL in New Jersey for certain conditions including Crohn's Disease & Inflammatory Bowel Disease

Medical Marijuana is LEGAL in New Jersey for certain conditions including Crohn’s Disease & Inflammatory Bowel Disease

 

Where does this Medical Marijuana journey start? 

     Besides the high cost of both the Medical Marijuana in New Jersey and having access to the “process” of being able to obtain Medical Marijuana in New Jersey, and none of it eligible for coverage by healthcare insurance, another big problem I’ve encountered thus far is knowing who to see to start the approximate one (1) month to six (6) week process of obtaining Medical Marijuana.  For example, last week I met a fellow New Jersey Crohn’s Disease patient on social media after I posted I was in the process of switching to Medical Marijuana for treatment of my Severe Crohn’s Disease.  This person responded with a comment something to the effect of: “Well, I would love to try Medicinal Marijuana for my Crohn’s Disease, especially since so many people I meet with Crohn’s can’t say enough good things about it, but my gastroenterologist does not recommend it.” 

     My first thought was how cruel and inhumane his gastroenterologist was treating him but I wasn’t sure how that conversation exactly took place.  Did he ask the gastroenterologist for a Medical Marijuana “prescription” and the doctor rejected the concept of using Medical Marijuana for Crohn’s Disease or did the gastroenterologist simply state the fact that he doesn’t “recommend,” or is not permitted to “prescribe,” Medical Marijuana?  In either case, the doctor seems like an arrogant know-it-all who clearly doesn’t care what his patients have to say because he should have told this Crohn’s Disease patient: “I don’t recommend the use of Medical Marijuana for the treatment of Crohn’s Disease but many patients are trying it and if you want to try it you must go through a certain process pursuant to the 2010 Medical Marijuana law passed in New Jersey.  My assistant can get you the information and I only ask that you keep me in the loop so that when I treat you going forward I will know you are trying Medical Marijuana.”  

     This gastroenterologist-reliant Crohn’s Disease patient had to rely upon the SHEER LUCK of running into me on social media in order to take advantage of the Medical Marijuana law which was passed in New Jersey in 2010.  That SHOULD NEVER HAPPEN IN ANY STATE and Crohn’s Disease patients in New Jersey should be more in tune with their rights and options regarding their treatments.  At a certain point in time, I was just as guilty of being uneducated about my rights as this Crohn’s Disease patient.  It is my serendipitous interaction with this New Jersey Crohn’s Disease patent which provided the impetus for this Blog Post. If New Jersey and its gastroenterologists are not going to publicize this Medical Marijuana law in which CROHN’S DISEASE PATIENTS ARE SPECIFICALLY MENTIONED, then I will promote it and I hope other Inflammatory Bowel Disease (“IBD”) patients will follow my lead.  More specifically, New Jersey Crohn’s Disease or IBD patients seeking to try Medical Marijuana should contact Dr. Anthony Anzalone at 1-855-768-3621.  His current main office is located at 331 Newman Springs Road, Red Bank, New Jersey 07701.  His office is located in Building ONE (1) on the 4th Floor in Suite 143.  He also has offices located in East Rutherford, NJ and in East Brunswick, NJ.  His website is located at: http://njgreenmd.com .

In New Jersey, IBD & Crohn’s Disease are Medical Marijuana-worthy

     I’m also writing this contemporaneous series of Blog Posts as I go through the various steps to obtain Medical Marijuana in the State of New Jersey for treatment of my Severe Crohn’s Disease.  I mention my ailment specifically because the 2010 law which made Medical Marijuana legal in New Jersey cites, as qualified people, only those with the following debilitating medical conditions:

  • Amyotrophic lateral sclerosis (“ALS”)
  • Cancer (chronic pain and nausea related thereto)
  • Multiple sclerosis (”MS”)
  • Terminal cancer
  • Glaucoma
  • HIV/AIDS (chronic pain and nausea related thereto)
  • Muscular dystrophy
  • Seizure and/or Spasticity disorders
  • Inflammatory bowel disease, including Crohn’s Disease (“IBD”)
  • Terminal illness, if the physician has determined a prognosis of less than 12 months of life.

     Seeing Crohn’s Disease specifically mentioned in such a short list alongside of ALS, a disease I consider to be one the most devastating known to the universe, is disconcerting because I’ve never viewed my Crohn’s Disease that way since being diagnosed with Crohn’s in 1984 at the age of 21 despite almost thirty (30) surgeries, gastrointestinal and beyond, and two-hundred+ (200+) hospitalizations.  I guess it’s an eye-opener for me impacting me in the same shocking manner as reading aloud a list of all my surgeries after they are chronologically-listed on a notepad in preparation for a surgical consultation. But people with incredibly challenging diseases never see themselves as “sick,” for if they did, depression or a “woe is me” attitude would set in and such emotional sentiments are counterproductive to moving forward, as we all must do in life.  However, ever since Crohn’s Disease disabled me in 2010, I’ve dedicated much of my healthy time to raising global awareness of Crohn’s Disease and its potential pervasive, devastating, financial, social, professional and painful effects.  But it’s been difficult to convince ordinary people that IBD, and Crohn’s Disease specifically, is much more than a “bathroom disease.”  Some get it, most don’t and even seasoned IBD patients have trouble spelling “Crohn’s” correctly.  People tell me I look very healthy and I’m sure others who don’t know me cringe when they see me exit my motor vehicle in a prime handicapped parking spot even after spotting the official, government-issued handicapped parking placard hanging from the rear view mirror. But now Crohn’s Disease is specifically listed as Medical Marijuana-worthy in most, if not all, of the twenty-four (24) States (including the District of Columbia) which currently have legalized Medical Marijuana alongside of just a few other diseases which I think it’s fair to say most people would categorize as horrific. In a strange way, this finally represents an accurate mainstream awareness of Crohn’s Disease which I never thought was possible.

     While I wish there was an easy way to explain Crohn’s Disease to these understandably skeptical people, it is an “invisible illness” from their vantage point, and besides, they’d never believe my story were I afforded the time to explain it.  Nevertheless, I understand their simultaneous contempt toward me and their respect for the handicapped but it’s quite sobering to read about Crohn’s Disease in a governmental official listing of the very few approved serious diseases (such as ALS) for which Medical Marijuana is permitted as an alternative treatment in New Jersey.  For Crohn’s Disease, Medical Marijuana is authorized to conceivably combat the often excruciating pain and/or unimpeded systemic inflammation. To that end, maybe now people will better understand the potentially systemic, pervasive and lifestyle-threatening effects of Crohn’s Disease?  Unfortunately, for at least the time being, not a chance because New Jersey’s Medical Marijuana law is perhaps the most restrictive law of its kind within the medically permissible 24 states (including the District of Colombia).  New Jersey’s law is also not promoted very well as an alternative to the very patients it was signed into law to help.  There also doesn’t seem to be any support for the patients who choose to take advantage of the relatively new law nor is there support for the compassionate or profit-driven medical professionals who seek to help these patients comply with the law.  The result is stigmatized patients referred to as “druggies” or “drug-seekers” and medical professionals denigrated as neighborhood “pot dealers” whom are often kicked out of their professional office spaces on little or no notice once their landlords discover their role in the facilitation of a law enforced by New Jersey’s Department of Health.

Why Now?

     For many years I relied on the most professional of Pain Management Doctors and managed my obstructional Crohn’s Disease and chronic pain with carefully monitored narcotic pain medications.  But I never liked being so beholden to these drugs nor to insurance companies deciding for themselves the appropriateness of the amount of drugs prescribed by my Board Certified and Crohn’s Disease experienced Pain Management Doctor given my multitude of painful problems especially considering that these insurance company doctors never examined me or even contacted me to ask me how much pain I was in and/or whether or not the pain medications were helping me.  Then most recently I began to see a pattern of politicians looking to change the laws regarding prescription painkillers due to the tragic apparent epidemic of overdoses of these drugs.  I certainly support efforts to eradicate such a tragic problem but it always seems to me like many of these politicians have their own selfish unrelated agendas similar to those of sketchy public figures who “take advantage” of a tragic school shooting to bring attention to themselves by recommending harsh gun laws as a response, all the while knowing such laws will never be passed by Congress.

     Obviously, there are some incredibly-dedicated civic-minded people who become politicians to make a difference in these types of areas and I commend them for making such a sacrifice and I have the utmost respect for them. But I disdain politicians proposing to “strengthen” narcotic prescribing laws without giving any thought to the millions of people battling chronic pain who rely upon these drugs and the responsible Pain Management Physicians who prescribe them.  It’s as if they are discriminating against patients battling potentially horrific diseases like ALS, Multiple Sclerosis, Crohn’s Disease, Ulcerative Colitis or those fighting chronic pain.  These laws seem to get more and more “anti-narcotic” rather than “anti-drug-abuse” or “anti-drug-misuse” such that even the most conservative of these laws is predicated on “throwing out the baby with the bathwater.”  People like me are the “baby” in this metaphor, and there are patients MUCH WORSE OFF THAN ME, don’t we matter?  Why don’t these politicians mention us when they seek to combat this tragic epidemic of overdose or misuse of these prescription painkillers? How come we are never consulted or even asked our opinions regarding these issues?  Do ALL or ANY of these politicians understand the severity of pain involved with an intestinal obstruction, a fairly frequent occurrence in an aggressive case of Crohn’s Disease like mine?  What about waking up in so much pain because of Rheumatoid Arthritis that someone has to come to help you get out of bed so you can start your day to contribute to society and/or a prescription narcotic is needed to take the edge off the pain so you can simply go about your daily personal hygiene routine?

   A major factor in considering alternatives to pain relieving narcotics is my vulnerability to some schmuck politician who could ruin my quality of life by passing some ridiculously restrictive law pertaining to prescription painkillers.  That’s when I started learning about New Jersey’s Medical Marijuana Law.  Also, for a few years I’ve been contacted by THOUSANDS of Crohn’s Disease patients each telling me how Medical Marijuana substantially enhanced their quality of life.  These were not “Extras” from the 1982 classic movie, “Fast Times at Ridgemont High;” they were respected professionals with families raising children.  They too had grown frustrated by all the unreasonable rules and regulations imposed upon their use of narcotic pain medications.  They sought something better which actually helped treat their disease in addition to their pain. They were each searching for something which gave them more control over their lives to the extent they had any left after Crohn’s Disease had ravaged the quality of their lives, put strains on their marriages, compromised their prolific careers and left them feeling controlled by their disease instead of the other way around.   Then they came upon Medical Marijuana, after internet and Crohn’s Disease social media group searches for something better, kept yielding the same answer.

Who to Call in New Jersey for Medical Marijuana?

     I read the New Jersey Medical Marijuana statute and by virtue of having Crohn’s Disease I clearly qualified.  But over the years each time I contemplated switching Pain Management Doctors to a more convenient one in New Jersey, I’d seen a few Pain Management Doctors in New Jersey and I knew they hadn’t yet been recommending Medical Marijuana so I turned to Google.  The name “Dr. Anthony Anzalone” kept popping up.  He offered consultations during which he would “recommend” Medical Marijuana, if it was appropriate in his opinion after closely reviewing my medical records and discussing with me the severity and progression of my Crohn’s Disease.  There were a few other doctors who did the “recommending” [a magic word in the statute] so I jotted down 2 phone numbers and began calling.  The phone lines at BOTH were busy for HOURS.  I finally got through to Dr. Anzalone’s office and a kind woman asked me a few questions and made an appointment for me to see Dr. Anzalone the following Tuesday, April 19, 2016, at their Iselin, New Jersey office.  After we set up the appointment she passed me to a “Patent/Counselor” so he could tell me what to bring and what to expect.  He too suffered from Crohn’s Disease and he raved about how Medical Marijuana had changed his quality of life.

     He told me to bring my New Jersey Driver’s License, a current (i.e., within 60 days) utility bill in my name and a written diagnosis of Crohn’s Disease (if that, in fact, was my diagnosis) from a credible New Jersey doctor, i.e., either a NJ gastroenterologist or a NJ Pain Management Doctor.  We briefly discussed my expectations and he shared with me what his were when he first started. He explained the different active ingredients of Medical Marijuana, that is, the anti-inflammatory component (i.e., “Cannabinoids” or “CBD”) and the pain relief ingredient (i.e., “Tetrahydrocannabinol” or “THC”) and how using one could enhance the effectiveness of the other.  I hung up the phone feeling confident I had called the right doctor.

     I specially mentioned the town where Dr. Anzalone’s office WAS because when I got there on the day of the appointment and went up to his office, I was told by a very nice lady that he no longer had an office there.  But something about the way in which she addressed me made me feel like she thought I was a “drug-seeker.”  It reminded me that I had Googled Dr. Anzalone a few weeks prior and noticed that a few of his landlords (as he had offices at several locations) had unexpectedly evicted him despite him and his staff never dispensing Marijuana.  As I walked back to my car I honestly couldn’t tell whether I was angrier at not being called and notified of the office change or that some holier-than-thou landlord in Iselin or Woodbridge, New Jersey (the address was 33 Wood Avenue South, Iselin, NJ but I believe the town was technically Woodbridge) had suddenly evicted a doctor who truly was making a difference in so many people’s lives.  So I called the only number I had for Dr. Anzalone and I left a terse message about not being notified but I also admitted I suspected what had probably happened so unexpectedly and it made me so angry that patients like me and doctors like Dr. Anzalone were being stigmatized like this. The very kind Office Manager called me back within 2 minutes and asked me how far away I was from a town close by because the doctor could see me there.  I thanked her and headed there.

The In-Person Appointment w/ Dr. Anthony Anzalone

            This was not like a typical doctor appointment because much of it involved EDUCATION, which, when you really think about it, should be included when you go to see ANY DOCTOR. While it wasn’t necessary to do so, I prepared a 4-page Chronological Summary Listing of my almost thirty (30) surgeries. On that same document I also listed my major sources of pain and how severe the pain becomes and what typically triggers the pain, if I knew, and when it typically occurred, again, if I knew.  This may sound strange amidst my explanation of unpredictable Crohn’s Disease pain but when the weather abruptly changes or the seasons change and the temperature becomes abruptly colder or warmer, that’s when I typically have my worst Crohn’s Disease flare-ups and that’s when I am prone to Sacroiliitis, etc.  I know this because I could see the pattern when I look at all my surgeries or recall any of my two-hundred+ (200+) hospital stays.  I also included a detailed list of all the medications I take.

         The more Dr. Anzalone spoke about the benefits of Medical Marijuana for Crohn’s Disease the more he appeared to be a passionately-driven auto-didactic expert and I was impressed.  I’ve been privileged in my life to meet a few pioneers in healthcare and Dr. Anzalone seemed to fit within that description.  Then he explained what happened at the Iselin, NJ office and the attorney in me was fascinated by the legal problems this man was going to have to navigate in order to help so many people.  I wanted to help him.  I still do but I’m disabled and can’t practice law until I can reasonably rely upon my health.  He mentioned his staff was unable to get in touch with me prior to my appointment because they were helping him deal with a staggering amount of local and national media requests and also they didn’t know where to send me if they were able to even get in touch with me.  Here is an article written about the eviction experience in a local New Jersey newspaper/website. I was thoroughly impressed by his logic and directness and I appreciated his personalized explanation about the Iselin oversight.  He did not at all seem like an attention-seeking doctor nor did he seem like a man using the notoriety of “recommending” Medical Marijuana in New Jersey to suit his own agenda, whatever it may be.

     He explained the two (2) different helpful components of Medical Marijuana, that is, the anti-inflammatory “Cannabinoids” or “CBD” and the pain relieving “Tetrahydrocannabinol” or “THC.”  Dr. Anzalone explained how the THC could be used initially for pain relief but that when used with the Cannabinoids it could actually increase their anti-inflammatory effect which in the long run would cut down on the amount of THC Medical Marijuana I’d have to use in order to obtain reasonable pain relief.  This is important because the Cannabinoids do not create a euphoric feeling and they can be used every day as a genuine therapeutic substance to help with inflammation.  The man is a peripatetic true believer who does whatever he can to communicate his healthy message.  But he is not alone in this Medical Marijuana crusade and I believe there are actual medical studies in Israel which confirm all that I’ve been told thus far.  I suspect there will be many other studies conducted all over the world so that Medical Marijuana no longer requires crusaders like Dr. Anzalone and it can be embraced and utilized by the mainstream.

     Dr. Anzalone then studied the documents I had prepared and suggested a combination protocol for me but he deferred to an actual Crohn’s Disease Patient/Medical Marijuana Counselor to counsel me on the specific protocol for my disease and on everything I needed to know about Medical Marijuana in New Jersey.  This Crohn’s Disease Patient/Medical Marijuana Counselor was extremely knowledgeable about the New Jersey law and he detailed how taking Medical Marijuana had helped him with his battle against Crohn’s Disease and it had also so significantly increased his quality of life.  He also accurately explained the UNFORGETTABLE description of an intestinal obstruction so I knew he was a kindred spirit.  He went through the technicalities with me including how they would aggregate all my information and email it to the NJ Department of Health, Medical Marijuana Project.  He went over the timing I should expect for my participation in the program to commence.

How long does it take to get the New Jersey Medical Marijuana Card?     

     More specifically, I would receive an email from the Medical Marijuana Project at the New Jersey Department of Health in approximately 10-15 BUSINESS DAYS indicating I’ve been approved for a Medical Marijuana Card which apparently costs $200.00 and I would be prompted by the email on how to pay it.  I glanced at the website and saw there could be discounts for patients like me receiving Social Security Disability so I will inquire at the appropriate time.  After they receive my payment, the Medical Marijuana Card will be mailed to me (Dr. Anzalone’s staff had taken my picture after confirming my identity via my Driver’s License and my NJ residency via my Verizon Wireless recent bill) so I should receive it after another 5-10 days.  Essentially the wait after this appointment for the Medical Marijuana Card, and thus the ability to purchase Medical Marijuana in New Jersey, is approximately one (1) month to six (6) weeks.  There is also a requirement that I receive counseling at least 4 times prior to my initial use of Medical Marijuana and based upon our intensive phone and in-person discussions thus far, it appears I have satisfied that aspect of the law. That said, I’m sure I will be in contact with this Patient Counselor once I receive my Card from the State so that I know exactly what to purchase.

The financial cost of participating in the New Jersey Medicinal Marijuana Program

     The initial $200.00 Medical Marijuana registration is good for 2 years but I must see or consult with the doctor again at some point so he can evaluate my needs going forward after 30, 60 and 90 days.  But I am not sure how Dr. Anzalone and his staff handles that “visit.” The Initial In-Person Consultation/Appointment with Dr. Anzalone costs $350.00 and that seemed to be the standard initial fee.  Health Insurance does not cover ANY OF THESE COSTS RELATED TO MEDICAL MARIJUANA.  (Note for comparison purposes:  New York’s Medical Marijuana Program charges a one-time fee of $50. At New Jersey’s five (5) operating dispensaries, the medicinal-quality Medical Marijuana costs about $500 an ounce, which is twice the street value.  Patients in New Jersey are allowed to buy only 2 ounces per month.)

The Five (5) New Jersey Medical Marijuana Dispensaries 

     The Patient/Counselor and I then discussed which of the five (5) “dispensaries” (known as “Alternative Treatment Centers” or ATCs in the “New Jersey Compassionate Use Medical Marijuana Act”) would be best for me.  I presently live in West Orange, New Jersey so I thought the dispensary closest to my residence would be best but he suggested a different one above all the others even though I lived fairly close to one of the other dispensaries.  He recommended that particular dispensary because he felt the people running it were very knowledgeable and their prices were fair.  Then he started recommending different combinations of product and that’s when I started to fog out as it was too much information to process.  I think he understood and I will most assuredly contact him before I go to make my first purchase.

Smoking the Pot, No Edibles in New Jersey & Paperwork Assistance

     I had several questions which the Counselor answered thoroughly and the Office Manager was kind enough to chime in with her experiences when they were instructive regarding my questions.  I was concerned about having to smoke the Medical Marijuana due to my lung problems and this fleshed out a major inadequacy with the New Jersey Medical Marijuana law in that they do not offer ANY “Edibles” or Medical Marijuana which can be digested.  It seems they offer, at a very steep price, the kitchen tools to bake Medical Marijuana brownies (and I may have to do this) but they do not offer Brownies as a product, like they do, for example, in New York.  In any event, the 2-member office staff could not have been more helpful and they each made me feel comfortable as I began my journey into the world of Medical Marijuana.  It is also important to note that the Patient Counselor and the Office Manager organized all of my information during our Consultation and then they electronically packaged it properly and emailed it to the appropriate New Jersey governmental office.  It is my understanding this does not happen at all other New Jersey Medical Marijuana-recommending doctor offices. Therefore, when you make an appointment, you would be best served by asking if they submit all of the required paperwork to the government in New Jersey or if some of that is your responsibility.

Limitations of the New Jersey Medical Marijuana Law

     By quick comparison, the New York Medical Marijuana law limits the monthly amount to what the doctor believes is a 30-day supply and therefore does not list a specific amount.  This makes sense given that “Pain” is subjective and its severity differs from person to person, even for the same malady.  The New Jersey law limits the monthly amount to two (2) ounces as if everybody responds to pain in the same manner and thus requires the same exact amount of pain medication.  As someone who’s switched from narcotics, this seemingly limited amount of monthly Medical Marijuana could force me to supplement the pain relief from the Medical Marijuana with some narcotics from my Pain Management Doctor.  I simply have no idea at the moment; I’m just pointing out a potential problem with the law especially if part of its intent was to help patients in pain reduce their intake of the more highly addictive narcotic painkillers once they’ve switched to Medical Marijuana.

     Again, by way of example, here’s a list of the different Medical Marijuana “Edibles” being legally sold around the United States.  The benefit to Edibles can be significant in terms of the medicinal effects lasting longer and possibly even being more potent.  It is also a more preferable form to consume Medical Marijuana for people with lung problems or for folks who wish to be more discrete in how they consume Medical Marijuana.  Here is a summary of these benefits along with the packaging concerns regarding Edibles possibly attracting the attention of children or other individuals for whom the drug is NOT intended. Lack of access to the Medical Marijuana in edible form is also of particular concern for lung-cancer patients and children, for whom smoking dried medicinal Cannabis is problematic. Moreover, experienced Medical Marijuana users prefer the edible form of Cannabis because it eliminates extraneous plant material and contains only the essential medicinal cannabinoids.  Apparently, an owner of one of the New Jersey’s five (5) Medical Marijuana dispensaries says making edibles available is the “number one” change the State should make to the program.

Summary

     New Jersey may have the MOST RESTRICTIVE Medical Marijuana law in the United States.  From a limit of only two (2) ounces per month, no “Edible” product, only five (5) dispensaries, an almost thirty (30) to forty-five (45) day “Waiting Period” to get a New Jersey Medical Marijuana Card (which seems more suitable to the purchase of a handgun than to the purchase of a fairly benign natural drug which has been proven to help MANY PEOPLE SUFFERING WITH A VARIETY OF PAINFUL SYMPTOMS) and an extremely HIGH COST of product and HIGH COST OF MAINTAINING ACCESS to the Medical Marijuana process, it’s almost as if patients are being penalized or paying a tax simply because they want to try Medical Marijuana to get off of much more addictive narcotics to treat chronic pain or, for example, an Inflammatory Bowel Disease like Crohn’s Disease.  Accordingly, the New Jersey Medical Marijuana law needs major revamping in order to meet the true medicinal needs (and financial capabilities) of the patients it purports to support.  The doctors brave enough to want to help these patients are being evicted from high-end doctor office buildings on no notice simply because of their involvement with Medical Marijuana and they don’t EVER dispense product.  These medical professionals need to be better supported for this Medical Marijuana law to effectuate its excellent intentions.

This is a fascinating issue about which I expect to see much debate in the very near future which hopefully triggers some changes to the existing New Jersey Compassionate Use Medical Marijuana Act.

Please share your thoughts and comments. Thank you.

Please share your thoughts and comments. Thank you.

“Entyvio” & Inflammatory Bowel Disease

Video 1 of 4 HOW does “Entyvio” treat Crohn’s Disease &/or Ulcerative Colitis?

This is Video 1 of 4 from my March 29, 2016 interview with GLOBAL Inflammatory Bowel Disease (IBD) EXPERT, Dr. Mark L. Chapman, from the IBD Center at Mt. Sinai Hospital in New York City.  Dr. Chapman is an IBD EXPERT in every sense of the word as he is ONE (1) of only 2 or 3 still-practicing gastroenterologists who were trained by the illustrious Dr. Burrill Bernard Crohn whose advancements in gastroenterology enabled him to identify the disease which bears his name.

In this video Dr. Chapman explains the science behind how Entyvio works as a Biologic drug to treat Crohn’s Disease and Ulcerative Colitis.  More specifically, Dr. Chapman explains Entyvio’s mechanism as being a “lymphocyte trafficking blocker” placing it in a different class of Biologics than the other available Biologic drugs (i.e., Remicade, Humira, Cimzia and Simponi) which are all anti-TNF activity suppressors.  Dr. Chapman also explains how Entyvio is the result of improvements to the drug, “Tysabri,” which left Crohn’s Disease and Multiple Sclerosis patients vulnerable to a dormant, but potentially fatal, brain disease.  As the IMPROVED VERSION, Entyvio thankfully no longer presents this horrific brain disease risk for IBD patients.  However, Entyvio’s popularity is nevertheless plagued by the mere potential of activating such a catastrophic brain disease even though the drug is no longer capable of doing so.

Video 2 of 4How Doctors are REALLY using Entyvio to treat Crohn’s Disease & Ulcerative Colitis

This is Video 2 of 4 from my March 29, 2016 interview with Dr. Mark L. Chapman from the IBD Center at Mt. Sinai Hospital in New York City.

In this frank Entyvio discussion, Dr. Chapman goes into detail about WHEN he and his colleagues use Entyvio (and some are even using it as a First Line Biologic for IBD), HOW LONG they use Entyvio and when they use it in DOUBLE THERAPY along with immunosuppressant drugs.  In a truly genuine manner, Dr. Chapman  addresses my contention (and frustration) that different doctors around the world seem to utilize different IBD treatment approaches regarding Biologics like Entyvio thus leaving Crohn’s Disease and Ulcerative Colitis patients wondering whether they are receiving these drugs in the appropriate circumstances, for the appropriate duration and in the most effective combinations in circumstances of Double (or Dual) Therapy.

Dr. Chapman compassionately explains how this apparent lack of a universal IBD treatment methodology has more to do with doctors being trained to follow rigid algorithmic treatment formulas when they should also be incorporating “common sense” implying that successfully treating perplexing autoimmune diseases such as Crohn’s Disease and Ulcerative Colitis requires BOTH a proven scientific methodology and an artistic “feel.”  From my perspective as his patient for 30+ years, I find fascinating Dr. Chapman’s humble substitution of the phrase “common sense” for “hands-on patient experience” as he’s so far exceeded the 10,000 Hour Rule in his 50+ years practicing advanced gastroenterology in New York City successfully treating the most complex Crohn’s Disease and Ulcerative Colitis cases.

Dr. Chapman further explains how a health insurance company’s algorithmic IBD treatment recommendations for a Biologic drug like Entyvio affects even the most erudite and experienced of these doctors using different IBD treatment methodologies due to the unusually high cost of using biologics and immunosuppressants to treat IBD.  While Dr. Chapman never says so, I get the feeling these health insurance companies often look to him (and to the few other IBD doctors with similar world-class experience successfully treating the most difficult cases of Crohn’s Disease, Ulcerative Colitis and Indeterminate Colitis) when, for example, Entyvio finally yields success after the recommended 14 weeks or in Double Therapy along with specific immunosuppressants. Dr. Chapman also explains why Entyvio could work for an IBD patient non-responsive or intolerant to any of the anti-TNF Biologic drugs since Entyvio is in a different class of IBD Biologics as it operates differently than the anti-TNFs and targets different mechanisms of the immune system.

In Videos 3 and 4 Dr. Chapman answers many of the Entyvio/Biologics patient questions submitted to me via social media prior to the Interview.  I hope to edit and post Videos 3 and 4 by early next week.  Thank you for reading and watching.

Please leave any constructive comments.  Thank you.

Please leave any constructive comments. Thank you.

When my health permits and my life isn’t so dedicated to taking care of my Mom, my overall goal is to add content from my 2-4 interviews with Dr. Chapman to a patient-driven IBD Documentary produced by an IBD Charity I founded called, Crohn’s Disease Warrior Patrol, or “The CDWP.” Dr. Chapman would then become the film’s “Medical Expert” and his “contributions” will live on forever educating Crohn’s Disease and Ulcerative Colitis patients. 

“Entyvio” vs. Crohn’s Disease & Ulcerative Colitis?

This is Number One (1) of FOUR (4) short Videos re: the viability and implementation of the Biologic drug “Entyvio” to treat Crohn’s Disease and Ulcerative Colitis, the 2 most common Inflammatory Bowel Diseases (IBD). These Videos are the result of my March 29, 2016 interview with Dr. Mark L. Chapman of the IBD Center at Mt. Sinai Hospital in NYC. Dr. Chapman is an IBD EXPERT in every sense of the word as he is 1 of ONLY 2 or 3 still-practicing Gastroenterologists who were trained by the illustrious Dr. Burrill Bernard Crohn whose advancements in gastroenterology enabled him to identify the disease which bears his name.

Dr. Crohn (by his achievement) and Dr. Chapman (by his actions, knowledge, compassion and heart) have been incredibly important in my life.  It certainly was no fun growing up in hospitals in different states as I went to college then business school and then law school and had catastrophic experiences with my disease at every stop along the way but with overwhelming adversity came prodigious “daily” clarity and that “BS Detector” has served me well, at least with respect to the people I’ve been privileged to call my friend.   To that end, I was recently asked to write a Book Binder Endorsement for a very cool book on Crohn’s Disease written by a witty, creative, British Crohn’s Disease patient, Kathleen Nichols.  I liked the Book very much and I remember highlighting her actual words from the part about “Relationships” because she NAILED IT by writing: “Fair-weather friends are little to no use to Crohn’s Disease patients, as we often require an umbrella more than sunglasses.  Snow shoes over sun lotion.”

Kathleen’s take on “Relationships” when you have Crohn’s Disease is so DEAD-ON because it conveys the harrowing life of Crohn’s patients and the resulting clarity gained through adversity which whispers in the ear when it’s time to wean out relationships to only the ones with whom supporting them NO MATTER WHAT is a no-brainer.  [Go Your Crohn Way by Kathleen Nichols ]

I’ve not written in some time due to my health problems and then having to attend to my Mom’s, and in due time I will explain, but for now, please understand I am a 30-year Crohn’s Disease patient and Dr. Chapman has been my gastroenterologist throughout my entire disease journey which has included approximately 20+ abdominal surgeries, 200+ hospitalizations and many surgeries for numerous “peripheral” manifestations of the disease which have occasionally even been life-threatening.  Dr. Chapman has ALWAYS been able to figure out ways to treat my Crohn’s Disease such that I never had to forgo my dreams and in the process I’ve learned a great deal from him.  These Videos are my opportunity to share Dr. Chapman’s knowledge with the world.

Please share your thoughts about the Dr. Chapman Interview with me, including ideas you have for future interview subjects. Thank you.

Please share your thoughts about the Dr. Chapman Interview with me, including ideas you have for future interview subjects. Thank you.

When my health permits, the overall goal is to add all of my interviews with Dr. Chapman to a patient-driven IBD Documentary produced by an IBD Charity I founded called, Crohn’s Disease Warrior Patrol, or “The CDWP.”  You’d be amazed at the number of IBD patients who’ve signed up to help others with IBD once I formed a charity to organize such services.  These people have such important knowledge about their experiences and sometimes, “IBD patients helping other IBD patients is the best medicine.”  God bless them.

I hope to edit and post Video Number 2 (of 4) next week and it will cover the ways in which Entyvio is being used most effectively to treat Crohn’s Disease and Ulcerative Colitis.  I will also be writing much more often now that my right shoulder is finally healing from extensive surgery in January, 2016 which rebuilt my biceps muscle, repaired the torn rotator cuff and rebuilt my AC Joint so that it no longer is “bone-on-bone” and brings me to tears whenever I try to raise my right arm or pick up anything with my right hand.  Now I just cry when I think about our upcoming Presidential election!

Aging with Crohn’s Disease

The many looks of Glenn Frey

The many looks of Glenn Frey

      The picture above is from a Fitness Campaign featuring Eagles co-founder Glenn Frey who passed away last week at the tragic young age of 67.  This is UNRELATED to the main topic of this Blog Post but since I presently can’t type without severe pain due to a shoulder injury for which I am undergoing surgery on Monday, January 25, 2016, I wanted to acknowledge it before it was too late. I was a huge Eagles fan and even moved out to California after reading about the charged creative and personal lifestyles they were leading.  I had the privilege of giving Glenn Frey this framed poster after too many people made fun of me for hanging it on the wall in my office. I reached out to a very well-connected Hollywood friend of mine to offer it up to Glenn.  I never thought he’d actually be contacted but a few days later Glenn Frey CALLED ME and said he wanted it.  I guess it captured memories of a certain time in his life which he cherished.  After all he and the Eagles had done for me, it felt good doing something for him. As a songwriter I always thought he and Don Henley formed a uniquely formidable team very much like Paul McCartney and John Lennon.  They complimented each other’s style in a manner which balanced out the song and gave it meaning to so many people in so many ways.  I don’t like reading about how celerity heroes of mine died.  I choose to celebrate and remember how they lived.  Glenn Frey knew how to live and my heartfelt sympathies go to his family, friends and band-mates. 

      In my opinion, the highest quality song ever co-written by Glenn Frey with Don Henley was “Lyin’ Eyes.”  Here’s 3 verses which whenever I hear them make me stop and “absorb” them as if they are referring to someone from my past or maybe even me playing one the song’s roles.  It happens every time and therein lies the greatness of Glenn Frey.  Peace, brother.

She gets up and pours herself a strong one,

And stares out at the stars up in the sky.    

Another night, it’s gonna be a long one.

She draws the shade and hangs her head to cry.

**********************************************

She wonders how it ever got this crazy.

She thinks about a boy she knew in school.

Did she get tired or did she just get lazy?

She’s so far gone she feels just like a fool.

**********************************************

My oh my, you sure know how to arrange things.

You set it up so well, so carefully.

Ain’t it funny how your new life didn’t change things?

You’re still the same old girl you used to be.

Why I haven’t been writing

      I haven’t been able to write much lately because in June, 2015, I injured my right shoulder while swimming.  Swimming had become my stress reducer ever since I had Left Hip Replacement surgery in early 2014 and had become the primary Caregiver for my 80-year-old Mom who has a variety of physical challenges commensurate with her age including a failed Double Knee Replacement which has left her with a great deal of pain and difficulties walking. Despite being “Disabled” from my Crohn’s Disease, I was finally improving my physical conditioning, safely and slowly through swimming, to the point where I felt comfortable challenging myself each day to swim further and longer.  In my youth, more specifically pre-Crohn’s Disease when I was almost 21 (which, incidentally, wasn’t a very good year), relying on my body to go faster and longer was fantastic.  But once I was diagnosed with an incurable autoimmune disease, I inevitably lost all positive momentum toward achieving my fitness goals because something medically serious always seemed to come up which required byzantine solutions like surgery or chemotherapy after brutally long diagnostic journeys.

      That’s exactly what happened with this most recent injury and it got even more bizarre when the painful symptoms in my right shoulder and right biceps and triceps muscles suddenly began occurring in my left shoulder and I wasn’t even using my left shoulder at the time.  Long story short, after many MRIs, CTs and consultations with medical specialists most people don’t know exist, such as a Physiatrist, on Monday, January 25, 2016, I am undergoing arthroscopic surgery on my right shoulder to repair a torn biceps tendon, a torn Rotator Cuff and an AC Joint which is so inflamed it is “bone-on-bone.”      

       My surgeon is incredibly impressive in not just his credentials but also in the way he treats his patients.  I’m very lucky to have survived this 6-month extremely painful diagnostic journey with my sanity in-tact, a specific diagnosis to-boot and with a surgeon repairing me so I can eventually resume doing some of the physical activities I love such as swimming.  That said, it is quite possible I will need this same surgery on my left shoulder after I recuperate but it’s also possible my left shoulder hurts me because it has taken over for the right shoulder and working double-time.   Some patients would look at that long road to recovery and get bummed out, but not me.  With the very real possibility of receiving no diagnosis at all, I’ll take the long road to recovery every time.  I think it’s all how you look at it because if you’ve never had severe pain and been told by well-respected doctors “there’s nothing wrong with you” or “I can’t help you,” you’d never know how desperate and hopeless the sound of those phrases can make you feel.

      Ironically, sitting down and typing seems to trigger the worst shoulder pain.  This is why I’ve had to abandon updating this Blog routinely or commenting on current issues regarding healthcare, Crohn’s Disease and managing chronic disease.  Please trust I will get back to this and to the several other projects I have in the works with my Charity, the Crohn’s Disease Warrior Patrol.  Chief among those projects is the Patient-driven Documentary on Inflammatory Bowel Disease (IBD) for which I’ve been interviewing patients and doctors over the past 2 years.  As I’ve gotten accustomed to my body betraying me, I’ve learned how to minimize its effects just as if a song or location I desired for a film fell through because the licensing rate required was too high.  That’s life with Crohn’s Disease and as I age my body seems to be affected more by its “peripheral effects” than by its more traditional gastrointestinal effects.  In some ways this is more disabling because I wind up seeing other medical specialists and many refuse to treat me as a Crohn’s Disease patient requiring their services and instead they treat me like any other patient.  In those situations, I speak up loudly, but respectfully, because the inflammatory component of Crohn’s Disease could change the diagnosis, treatment and care.

      Living with an autoimmune disease is about always being open to learning about your body and how it reacts under different circumstances.  It’s bothered me I’ve been unable to be productive over the past six (6) months due to the INTENSE pain in my shoulders.  But I am very confident my surgeon will do all that is possible to repair it and physical rehabilitation will require my undivided attention and finally give me something to do which will improve my health. As soon as I can sit down and type without seeing STARS from the pain, I will go back to regularly updating this Blog.  Thank you for your patience.

Please leave any constructive comments.  Thank you.

Please leave any constructive comments. Thank you.

abcs of IBD, Crohn’s & Colitis

IBD = Inflammatory Bowel Disease of which Crohn's Disease and Ulcerative Colitis are the most common.

IBD = Inflammatory Bowel Disease of which Crohn’s Disease and Ulcerative Colitis are the most common.

      In light of it being Inflammatory Bowel Disease (#IBD) Awareness Week, below are some quotes/comments I’ve made over the years and some I’ve come across from friends, patients, IBD parents and IBD doctors, along with some personal commentary which I think provides quick and accurate insight into what it’s like to battle these incurable, autoimmune and chronic diseases. Therefore, if you are newly diagnosed, an existing IBD patient going through a tough time or you have a friend with IBD and want to better understand what he or she goes through, please read this “list” I’ve compiled from my 30 years of living with Severe Crohn’s Disease:

  1. “You been hospitalized so many times, you’re like a pro at this so I won’t even bother visiting you since you’ll be out soon.” OR “I want to visit him in the hospital but he’s back in for that ‘Crohn’s Disease’ and I don’t want to interrupt him running back and forth to and from the bathroom while he’s in such terrifying pain.  Besides, what would I say?” [Scenario 1 – Actually, the more I’m hospitalized, the scarier it gets and the more I crave the normalcy of my friends and home life. So hospital visits from my friends are more important to me now at 53 then they were when I was first hospitalized over 200-times-ago at the age of 21 or so. Scenario 2 – Whenever I have Crohn’s surgery, I tell my friends to always call beforehand and not to surprise me because there’s always a few days after the surgery when I’m “waiting” to go to the bathroom and that 1st sudden urge can be embarrassing when your almost-girlfriend is sitting on your hospital bed trying to make you feel better or other visitors can’t get out of your way fast enough.  Not knowing what to say is a common anxiety of hospital patient visitors but it is based on a misconception of what hospital patients seek from their visitors. We only want our lives to return to some type of normalcy, even if just for the duration of a 15-minute hospital room visit from our buddies. We want to laugh and be kept in the loop.  We also want to have all our “stuff” once we are more mobile inside the hospital room and friends and family are incredibly helpful when they ask me if I need anything. My closest friends usually know when I’m allowed to eat and they surprise me with my favorite foods.  These kinds of visits have created wonderful memories for me despite them taking place because of a difficult experience.] 
  2. “I just saw you out partying Friday night and you were fine; now it’s Sunday and you are too sick to come to my wedding because of this stomach-ache disease?” [In my younger days when I still “partied” and was in denial about my disease and thought “clear liquids” included vodka,” I lost friends over issues like these because Crohn’s Disease patients often don’t look as sick as they are and the symptom of unpredictable and extreme fatigue is really a symptom of Crohn’s Disease and needs to be respected as one.  As for the classification of my disease as some type of serious stomach ache, that was always my fault because I always tried to downplay the fact I had such a serious health problem at the young age of 21.  When you add up all of these reasons and also factor in the lack of accurate awareness about IBD, I’m lucky my friends had so much patience with me. Their selfless acts to help me taught me how to be a better friend to them.] 
  3. “I don’t care how tired you are; you are coming to Family Dinner.” [I would go but I’d fall asleep at the dinner table as if I had drank Benadryl soup.  The unpredictable fatigue from my Crohn’s Disease is a potent symptom.  To this day I’m not sure if certain friends and family truly understand it’s pervasive effect on me. I think it is the IBD symptom which can be suddenly disabling yet it is also the symptom least formally associated with these diseases.]  
  4. I know it hurts but giving you narcotic pain medication will only make it worse because it slows things down which are trying to move through your intestine.”  [It took me a few years to find the specialty of Pain Management, and when I did, I lost respect for the many gastroenterologists I had come across whom refused to treat patient pain (or in some arrogant cases, refused to even acknowledge its severity) when all they had to do was simply refer those patients to Pain Management Physicians so these medical professionals could teach these IBD patients how to best manage and cope with their IBD pain. I’ve always understood the gastroenterologist’s medical rationale favoring the prohibition of using opiates as a pain relief modality for IBD but real life is much different than a medical textbook and even a mundane IBD lifestyle would require this type of immediate self-administered pain relief from time-to-time.  In that regard, I’ve always wondered if these narrow-minded and heartless gastroenterologists would change their almost torturous approach towards treating and acknowledging the severity of IBD pain if their own children were diagnosed with IBD and shared with them their struggles navigating an intimate dinner party, an important business meeting or even a first date while simultaneously trying to cope with a sudden partial or complete intestinal obstruction.]
  5. “Once you have a Colectomy, your Ulcerative Colitis will be cured.” [I’ve interviewed MANY doctors about this topic and the most experienced ones all agree that removal of the inflamed body parts could cure the gastrointestinal aspects of UC but the autoimmune aspects would continue to linger such that these patients would still be susceptible to the autoimmune peripheral manifestations of Ulcerative Colitis. Sadly, some doctors disagree on this seemingly elementary point and I just hope they don’t create false expectations in Ulcerative Colitis patients whom undergo a Colectomy.  That said, these peripheral manifestations may also never occur.]
  6. “Every drug has side effects. Don’t be scared off by the serious side effects of the Biologics because very few people get them.” [In Full Disclosure, I had a terrible time with Humira and developed serious lung problems for which I required aggressive rounds of chemotherapy to stay alive after I developed some type of aggressive lung inflammation which made breathing so difficult I was unable to breathe and talk at the same time.  That said, I KNOW PEOPLE WHO HAVE DONE VERY WELL on Remicade, Humira, Cimzia and Entyvio, some for MANY YEARS, and all with no or insignificant side effects.  “Your mileage will vary,” as they say.]  
  7. “Can I catch Crohn’s Disease from kissing you?” [A very pretty teenager with Crohn’s Disease who I was helping told me that a guy she liked asked her this just before they had their first kiss.  She was mortified but I just told her that the guy simply was uneducated about the disease and she should try to enlighten him and see how things go from there.  I’m not sure how that specific situation ended up but she’s never been asked that question again and has developed into a confident, happy and productive young adult.]
  8. “We can only release you from the hospital AFTER you’ve demonstrated [and we’ve documented] that you’ve advanced your diet from drinking clear liquids to full liquids and then eating soft food and having a normal bowel movement. But your insurance company will not pay for you to stay in the hospital for much longer so …” [This happens all the time at hospitals to the point where you feel bullied to rush your body after a surgery for Crohn’s Disease or Ulcerative Colitis. Don’t ever do that and always trust your body – NO MATTER WHAT.  It will let you know when it is time. Just be polite and respectful when speaking to all medical professionals.] 
  9. “I know your gastroenterologist a long time and I trust her judgement 100% but I don’t see anything wrong with your eyes.  The pain you have is probably due to stress or tension and it will go away on its own.”  This ophthalmologist may be 100% right but it has been my experience that Crohn’s Disease can cause SERIOUS eye problems as a “peripheral manifestation.” To that end, if you are not respectfully vigilant about your reasonable optic concerns, you could wind up regretting not trusting your instincts for the rest of your life.  In this instance, the kind of attentiveness I’m suggesting means seeing two (2) other eye doctors just to make sure a major medical problem is not brewing in that part of your body.  Other common types of “peripheral manifestations” of IBD can happen anywhere in the body and frequently we notice them before they reveal themselves to specialty doctors.  For that reason, IBD patients often must be like Medical Detectives, always on call.  
  10. “You prescribed a certain drug for my Crohn’s Disease and my insurance company is requiring a Prior Authorization Form from you explaining why I need THIS expensive drug instead of any of the many other less expensive alternatives which are also used to treat Crohn’s Disease. But now you want to charge me $50.00 to complete the rote Prior Authorization Form you’ve completed 100 times before for other Crohn’s patients or you won’t do it? Have I not paid you THOUSANDS OF DOLLARS over the past 10 years?  Am I not one of your longstanding Cash Cows?  Why are you ‘nickel and diming’ me when you will certainly earn a great deal of money off of me throughout the course of my disease?” [It’s hard to keep your cool when your doctor, or more usually, his or her drunk-with-power office manager, comes across as an inhumane and heartless soul.   But you must be FIRM because with diseases like Crohn’s and Ulcerative Colitis you may only have 6 1/2 feet of your Small Bowel left, or none at all, but you do have a certain amount of financial leverage so long as, all joking aside, you exercise it RESPECTFULLY.]
  11. “Doctor, why are you asking ME which Biologic drug I should go on for the continued aggressive course of my Crohn’s when I know nothing about them beyond their delivery methods and the related delivery conveniences?   [I see patients routinely posting queries in the different IBD Facebook Groups such as, “Which Biologic should I go on?” as if they are seeking crowdsourced advice about which dress they should wear to their Senior Prom! These POTENT medications are generally similar in how they work but they are individually different drugs which is why one person (ME) might have a delayed anaphylactic reaction to Remicade but can perfectly (at least temporarily) tolerate Humira (until its side effects made it difficult to breathe and talk at the same time).  Additionally, some IBD doctors use a Top-down method regarding the implementation of these various potent drugs whereas others use a Bottom-up approach.  Thus, this “Prom Dress” decision seemingly should be a medical one based on a doctor’s professional medical assessment of your IBD case taking into consideration your age, the severity of your disease, the duration and progression history of your disease, the success or failures of other medications used in treating your disease, etc.  Note: Pediatric IBD doctors are typically more aggressive than others with Biologics (thus, they often engage a Top-down methodology starting with the most potent drug) because kids tolerate these drugs better than adults due to some scientific reality involving their natural resistance to antibodies. But often a reasonable argument can be made about whether or not a teenaged IBD patient falls within a pediatric classification or is sufficiently medically mature to be considered an adult.  I kid with the “Senior Prom” metaphor but this has become an increasingly significant problem given the aggressive television advertising campaigns of certain Biologics.]  
  12. “I have been a patient of yours for 15 years yet you won’t return my phone calls to discuss my recent blood test and I must make a formal office appointment to spend 5 minutes discussing it at the cost of paying $125.00 for an office visit?” [Some doctors are great at their medical specialty because they become very good treating a specific problem and then they move on to another patient.  But doctors who treat IBD must maintain long-term, mutually respectful and trustworthy patient relationships due to the chronic and incurable nature of the disease.  The problem is that some of these doctors don’t realize they aren’t cut out for maintaining relationships with their chronic patients until it’s too late and by then they become those nasty, ego-centric  doctors from whom we IBD patients run. A medical office policy which makes a patient come in and pay for an Office Visit to obtain and discuss routine blood work could be demonstrative of a money-hungry doctor who’s simply lost the zeal for operating this type of chronic patient Medical Practice.  This is just something IBD patients have to continually monitor but policies like this one could be warning signs indicative of the need to find a new doctor.]  
  13. “Doctor ____, I have great respect for you and how well you have treated my Crohn’s Disease for many years but I wonder if it’s not time for me to change to another doctor because this is the 3rd time I’ve been admitted to the hospital in 7 weeks and each time I’m admitted you just give me intravenous steroids and strong pain medications hoping my flare-up will run its course and never return but I still wind up back at the emergency room a few weeks later.  What is your Plan of Treatment for me?  Do you even have one? Are the newest drugs and treatments being considered to more efficaciously treat my case?  Has my Crohn’s Disease gotten so complex that I need a new set of eyes treating me?  Must I go back into New York City to see gastroenterologists who see the most Crohn’s Disease cases and as a result are better prepared to handle a complex case like mine?”  [I was a “consultant” to a Crohn’s Disease patient who went through the above situation.  It broke my heart to see her repeat the same nightmare every few weeks.  I was careful to never give my opinion until it was asked for.  When it was, the resulting questions evolved.  The patient had a LONG relationship with this doctor but her IBD case had become too complex for him to best treat her.  I understood why she had difficulty confronting him about this and that’s why it’s always a good idea to have another person such as a family member, a friend or a paid advocate to intercede on your behalf.  Between the unbearable pain from the flareup, whatever medications she was being given to treat the pain/flare-up and the “Groundhog’s Day” frustrating emotions, she didn’t understand just how mentally and emotionally compromised her judgement had become.  Finally, some of her family members and I carefully pointed out to her how far her case had exceeded the capabilities of her very nice and compassionate doctor who should have referred her to a more active IBD specialist much sooner then when I entered the picture.  This is one of the hardest things IBD patients and IBD doctors must contend with and it’s why I always consider my relationship with IBD doctors as a collaboration.  I need to trust that my convenient suburban IBD doctor will know if and when I must be seen by more sophisticated IBD doctors more up-to-date on the latest research and information regarding available treatments.] 
  14. “I’m trying to clean up my financial life and in doing so it is obvious I need to declare bankruptcy because the amount of my seemingly non-stop medical bills SO outweighs my annual income yet there is no protection in the United States Bankruptcy Code for my situation as I can’t dismiss large medical bills from my longtime gastroenterologist when I will have to see him EVERY MONTH. What am I supposed to do?”   [This is a common rhetorical complaint of longtime patients with incurable, chronic or rare diseases because when medical bills start accumulating in 1986 or so and NEVER STOP even 30 years later, the enormous financial debt begins to have real-life implications. There are numerous reasons for the debt growing so large despite having excellent insurance but if this type of medical bill Bankruptcy were processed like a typical bankruptcy, these patients would have to stiff doctors who’d be treating them in the very near future.  If they did that, they would lose access to these doctors, many of whom could be keeping them alive.  Something has to be changed in this area because people with Rare Diseases or with very expensive chronic, incurable ones like Crohn’s Disease, are being forced to choose between going broke paying for all the medications and surgeries they need to live or foregoing all such medical needs and dying young or living in extraordinary pain. ]
  15. “Doctor, for the past 8 days I have had an NG Tube running from my nose into my stomach, a Foley Catheter running through my penis into my bladder and various intravenous lines for medication, liquids and food. When I get up to walk, I feel like a horse being walked around a stable.  When are some of these contraptions being taken out?  Is it really necessary that I walk around the hospital attached to all these machines?  And why do you need so much blood? Also, why do they wake me up to take sleeping medicine?” [While often very funny out of the necessity to cope with a cacophony of catastrophic circumstances, hospitalizations for Crohn’s Disease and Ulcerative Colitis still seem barbaric at times since the same tools and principals used in the 1950s are still being used today in 2015.  For example, every IBD patient dreads having an NG tube threaded up through their nose and then finessed down into their stomach through that very same nose (and usually done so by an inexperienced Medical Resident who has the magically malleable hands of a 55-year-old lifelong outdoor cement worker) to help alleviate the pressure inside their intestines causing them so much pain but it’s still the only way to quickly help a patient and also prevent an escalation and possible fatal intestinal perforation. Then again, I’ve been in so much pain that I’ve BEGGED to get for an NG Tube.  That’s how sardonically painful Crohn’s Disease can be.  But when you think about it, an NG Tube is no more than a siphon which empties the contents of the stomach into a collecting bottle.  Every-time I realize that, I wonder how no-one has thought of a less barbaric method during the past 50 years when we all now walk around with super computers in our pockets.  We can even call each other in different continents on our computers but when someone comes into an emergency room with an Intestinal Obstruction we still must make that patient endure the same additional extreme discomfort of having a young, still-learning almost-doctor insert a siphon up, through and down their nose into their stomach like they’re an elephant!  IBD is a very serious disease but there’s always humor in it because you meet wonderful people during your challenging journey.  Many lucky IBD patients never see the inside of a hospital and many don’t ever have to take medications which affect their immune systems.  But I hope you now understand how severe and pervasive IBD can truly be and how challenging it is to cope with managing the disease. Please also don’t forget about the extraordinary IBD Caretakers and how friendships and relationships become transformed to a higher place when one person learns about life through the other’s heroic daily battles with IBD and how these people with a chronic and incurable disease nevertheless remain forever inspirational in everything they do.  In any event, somehow, through all the ups and downs, IBD creates extraordinary people and now we just have to be patient because researchers are working hard at creating safer and more efficacious treatments and possibly even a cure for future generations.  At this point, though, I don’t want to dream big so I’d be happy if they started their progress by making the NG Tube obsolete.] 
Please leave any constructive comments.  Thank you.

Please leave any constructive comments. Thank you.

Lack of Problem-Solving in Medicine

Interestingly, I found no usable images under "Medical Patient Problem Solving"

Interestingly, I found no usable images under “Medical Patient Problem Solving”

      Happy holidays to all.  I’ve been on a self-imposed hiatus from regularly contributing to this Blog because in June, 2015, I unexpectedly faced a challenging medical problem and at the time there appeared to be no quick diagnosis in sight.  I knew battling the problem and embarking upon the diagnosis journey was going to be difficult but it has proven to be longer than I expected and the frustration of encountering doctors examining me solipsistically, instead of professionally trying to identify or solve my medical problem, has worn away at my resiliency, compromised my hopeful nature and replaced it with detachment and lassitude.  But with the passage of time comes revelatory perspective and it is that sagacious vantage point which is keeping me sane during this arduous diagnostic ordeal thus far at 6-months and counting.  While writing about my medical problem is physically difficult, I’m hoping my succinct account will be personally therapeutic and also help the many other people going through the exact same situation with un-diagnosed or incorrectly diagnosed medical problems.

What happened to me?

      In short, I fell backwards off the top of a 10-foot ladder in December, 2014, after standing fully erect on its top step and slipping while trying to access a household item for my Mom.  I landed on the cement floor in my garage and the brunt of the fall was absorbed by my upper back, shoulders and neck.  I thought I was certainly going to be paralyzed given my vulnerable falling position and the fright of paraplegia images flashed through my mind making the nanosecond accident seem like it was occurring in slow motion.  Halfway down, or at some time during the real life nightmare, I remember thinking I couldn’t hit the ground fast enough as the realization of being dependent on a wheelchair for the rest of my life began to set in and the quicker I learned my fate the better off I thought I’d be.

      Wheelchair-bound adversities have always represented an important concern of mine because one of the first times I got down and depressed about my many hospitalizations and Crohn’s Disease related surgeries I drove past a public park on a bright sunny day and noticed men my age confined to wheelchairs happily playing with their children.  I imagined some were War Heroes forced to give too much of themselves to fight for my freedoms while others were just unlucky with disease or accidents.  But from what I could see, none were victims and their enjoyment of life was contagious.  I vowed never again to view my Crohn’s Disease “challenges” as anything but and I drove away feeling lucky.  Those images have never left my mind and they soon became the foundation of my positive attitude regarding my Crohn’s Disease because they made me realize how lucky I was just to have an autoimmune disease which did not affect my mobility and independence.  In many ways, these tough men inspired me to become a prolific Inflammatory Bowel Disease (IBD) advocate.

      In any event, after I hit the cement floor and gathered my mental acuity, I slowly checked for blood and when I passed that hurdle I carefully started moving my toes and then my limbs.  Amazingly, all seemed okay but when my Mom ran into the garage and saw my flight pattern, I went to the hospital to get checked out.  The only serious injury was a Compression Fracture in my upper back.  It hurt a great deal and took a long time to heal due to the pro-inflammatory issues inherent in my Crohn’s Disease but considering the reasonable possible outcomes, I considered myself one lucky guy.

      After a few months, the Compression Fracture healed and I resumed exercising which, at the time, was primarily comprised of swimming laps and walking because I was also still rehabilitating from a February, 2014, Left Hip Replacement which took a longer time to heal than the norm due to my body’s aforementioned difficulties battling the potential undoing of all successful surgeries, namely, post-operative inflammation.  Thankfully my body was beginning to cooperate with my mind and after consistently exceeding weekly lofty exercise goals, my swimming sessions became both my salvation from other difficult real life issues on my plate and they made me feel euphoric and even optimistic about my life.  After swimming in a musty indoor pool all winter and spring, I successfully transferred my lap swimming to a beautiful Olympic-sized outdoor pool sometime in late May, 2015.  Then on June 30, 2015, a beautiful early summer day in New Jersey, I carefully slipped into the lap swimming lane of the outdoor pool and began my freestyle swimming session.  I tried to rotate my right arm to initiate my swimming stroke and I suddenly felt a tremendous pain, deep in my right shoulder.  I was so startled by the sharp but deep pain that the lifeguards thought I had a stroke and they dove in to help me get out the water.

Shoulder injury?

      I had been swimming for MONTHS so I wasn’t that freaked out by the shoulder problem once I got back home.  But within 24 hours the pain extended to my right biceps, triceps and down my entire arm.  My local orthopedist sent me for an MRI of my RIGHT shoulder and it was relatively normal save for some understandable bursitis after years of playing singles tennis, competitive softball and pick-up basketball.  This is when I started to become concerned and with my coping mechanism and stress outlet of exercise essentially off-limits, I had to reinvent the manner in which I managed stress but my options were limited and all non-physical.  Anything which made me sweat usually helped me survive and reading books and playing air guitar while listening to my iPod wasn’t exactly easing my anxiety. Then before I could even come to grips with embarking upon another diagnosis journey and consulting with a more experienced orthopedist the following week, I developed this same severe pain in my LEFT shoulder, biceps, triceps and entire arm.  My Pain Management Doctor suggested I see a top orthopedist in New York City and despite his best efforts and genuine dedication to figuring out my problem, he couldn’t.  Then one day he asked, “Have you fallen on your neck recently?”  I explained the December, 2014, backwards fall off the ladder and he suddenly got concerned and referred me to the spine specialist in his Medical Practice.  This is when the diagnosis journey truly left the station.

Cervical Radiculopathy?

      Before commencing with any treatment, this spine specialist made me go for an MRI of my Neck.  Then, during my next visit, he showed me on the MRI how I had a bone spur caught between two (2) particular cervical discs and explained I was likely experiencing resulting nerve compressions which explained my bilateral shoulder, biceps, triceps and arm pain.  He called it a “Cervical Radiculopathy” and indicated it could eventually require surgery but he thought an Epidural Injection would ease the pain for a significant period of time such that with additional timely injections I might be able to stave off surgery for a few years.  While he was quick to correlate all of my pain to the particular cervical discs, he did express bewilderment that despite my specific severe pain I did not exhibit any weakness in my arms.   Still, he strongly suggested an Epidural Injection.  At this point of time in August, 2015, the pain on the top of each shoulder felt like something the weight of a piano was resting on them trying to separate each shoulder.  I also had intermittent severe stabbing, throbbing and burning pains on the outsides of each shoulder.  My biceps often felt so strained and painful, I felt like I was being forced to curl 50 pound dumbbells all day long after I had already worked out with The Incredible Hulk.  My triceps similarly throbbed and burned intermittently; all day, and all night long.  The biceps pain ran down my arms like it was traveling through my veins and at times I felt all of these pains or just some of them.  I could not recognize a pattern nor could I recreate any of the pains.

      In the ensuing months I underwent two (2) unsuccessful Epidural Injections and several more diagnostic tests including an EMG test, CT scan and Myelogram.  The Epidural Injections seemed to dull the pain but only for a few days.  The EMG Test clearly showed I had nerve compressions at the different parts of my arms tested which correlated with the damaged or inflamed cervical discs highlighted in my Neck MRI.  But in the hierarchy of medical importance, the EMG test was lower on the totem pole than my “nonsurgical” MRI and “unimpressive” Myelogram.   The problem, as I understand it now, was that I had some symptoms of a Cervical Radiculopathy, but not all of them, and my Myelogram was ostensibly normal and it is considered the most indicative test for surgical intervention. Additionally, my limited response to the Epidural Injections seemed to disprove ANY nerve compression at all because if I had such a problem, these injections would have made a more significant difference.  As a result, my case was surely not “black or white” and I was stuck somewhere in the middle between needing neck surgery, seeing a neurologist, possibly having serious problems with both shoulders which manifested themselves within days of each other, managing the pain for the rest of my life or completely giving up and eating Double Stuff Oreos for breakfast and White Castle for dinner so that I’d have something to look forward to at bedtime and then in the immortal words of Dave Edmunds and Nick Lowe, “[I’d] have to turn sideways to get thru through the door.” *

The Pressure of Being Your Own Doctor

      As you will see below, I then began seeing a wonderful Physiatrist who’s given me back some hope but it is November 30, 2015, and not only have the above-referenced bilateral shoulder, biceps, triceps and arm pains intensified to the point where lying flat and level in bed is my only pain-free position but I also intermittently lose the dexterity between my thumb and forefinger and at times it feels as if each hand is beginning to get numb.  To that end, I worry if this goes on much longer how debilitating or painful my symptoms will become. Moreover, except for this Physiatrist and the doctors he’s referred me to, no doctor or surgeon, and I have seen MANY, has told me who to see, or what to do, after they took my money and with the warmth of an international assassin told me, “I can’t help you.”  The resulting pressure of having to become my own “Coordinating Physician” also wears heavy on my mind. The amount of medical knowledge I’ve had to learn in order to understand the difficulties in diagnosing my problem is enormous.  Moreover, the severity of my pain has begun to compromise my ability to process all the information shared with me during some very productive office visits.  For this reason, my sister has had to come to a doctor’s appointment with me and I frequently must being my Mom because most of my doctors are in New York City and I worry about leaving her alone at home in New Jersey for very long.

[A “Physiatrist” is a doctor who is a nerve, muscle and bone expert focusing on rehabilitative medicine creating personalized methods of treatment to improve a patient’s quality of life who’s been disabled as a result of disease, condition, disorder or injury.]   

      While I’ve never stopped pursing an answer, I began pushing my friends away because I’m already “the guy in the group who’ll never reach his potential because he’s always playing ‘defense’ due to chronic medical problems” and I’m tired of explaining these incredibly frustrating problems to people I love (i.e., my friends) whom I hope never have to worry about these types of problems.  Also, the weight of the overall decision-making has fallen on me and between managing my pain and taking care of my Mom, I’m operating on fumes.  But, my good friend “perspective” has suddenly popped up and it has emboldened me with the logical awareness that the science of medicine will eventually reveal my medical problem and I needn’t worry for much longer.  Alternatively, my symptoms could worsen such that they reach a diagnostic tipping point during which things will get worse before they finally get better.  Either way, I must remain positive and objective since in many ways I am functioning as my own doctor by coordinating the different medical specialists treating me and/or deciding which steps to take when I hit a dead end with, for example, a rheumatologist or neurologist. If not, the mere psychological aspects of the situation will start to cause me physical pain and I simply can’t bear any more.

The Lack of Problem-Solving in Medicine

      My Zen-like perspective notwithstanding, some medical professionals with anal sphincters as tight as Kim Kardashian’s G-string when she’s 8-months pregnant often add to my overall frustration when they recognize my case as not being “black and white” and then blame it on my incurable, and mercurial, Crohn’s Disease as if it’s a catch-all Medicare Billing Code.  I imagine such doctors take the easy way out and use my Crohn’s Disease as an ocean in which to hide their most challenging cases or they choose not to apply their skills and experience because they are lazy, complacent, too concerned with litigious tendencies of unhappy patients or they view their professional obligations as not including problem-solving.  This last reason keeps me up at night because in EVERY profession consumers pay professionals to do a job which always involves solving some type of problem.  Sometimes that job is easy and sometimes that job is more difficult.  Usually, payment for such professional services is commensurate with this degree of difficulty.  This is why lawyers typically bill by the hour to account for obstinate adversaries who might refuse to reasonably negotiate a fair settlement and it is why tailors carefully review the capabilities of a garment before agreeing to make alterations to it at a specific mutually agreed upon price.  Particulars aside, in each instance, professionals are paid to get the job done and not to look at the legal case or alterable garment and then opine AFTER BEING PAID, “Sorry, what you are asking to be done does not fall into my expertise [or specific medical specialty].”

      Notwithstanding the aforementioned abridged, but accurate, explanation of capitalism, some doctors will take your money and review your medical case from ONLY their ego-centric and medical specialty viewpoint and then tell you they can’t help you if your case does not overlap with their medical specialty.  By ignoring the patient’s problem-specific perspective, these types of doctors are proliferating this woefully lacking problem-solving deficiency in medicine. Granted, if my case doesn’t rise to the level of surgical intervention, I will understand but I will expect the surgeon to explain why, and to refer me to an area of medicine which can help me, either in a diagnosis or with some of the symptoms.  In my humble opinion, if a surgeon decided as such and then explained the decision to me and suggested helpful routes I could take to alleviate or at least minimize the effects of my current problem, I’d consider that a complete transaction.  But, shockingly, that has not been my experience.

The Problem-Solver – A Physiatrist

      After realizing I had already begun frequenting White Castle and eating Double Stuff Oreos for breakfast, I sought out the “Physiatrist” who had treated me in 2000 when I found myself in a similar un-diagnosable situation even though he doesn’t take any insurance and the costs will likely cause financial Crohn’s Disease to strike my Mom.   By way of quick background with this wonderful doctor, I had hurt my Back playing basketball in 1999 and when I fell on the concrete and tried to get up I could tell I had an injury I’d never had before in 20 years of playing hoops.  The pain was so severe I had to see a Pain Management Doctor and I was on a very high dose of narcotics just so I could take a shower.  But my MRI was NORMAL.   Still, I knew something very serious was wrong with me because my body would not be in so much pain.  A concerned friend contacted me and before too long I was speaking with the Physiatrist.  In short, he believed me and had me undergo a “discogram” which was made obsolete by the MRI technology but it still was reliably predictive of disc problems.  The theory behind the discogram was simple:  Saline was injected into the discs in my Back under fluoroscopy. A healthy disc would have no problem absorbing the saline whereas a ruptured disc would leak saline like a sieve and that leaking would be captured on radiographic pictures.  In my case, it turned out the disc at the L5-S1 level on my spine was ruptured.  It was apparently ripped from the inside-out and thus did not show up on the MRI.  Every surgeon then wanted to operate on me and perform spine fusion surgery whereas no one would help me when I presented with a normal MRI.  (My insurance company at the time would not pay for ANYTHING after the NORMAL MRI so I had to fight them.  I detailed my victory and successful surgery in my first book, “Confessions of a Professional Hospital Patient.”)

This Thanksgiving, I’m thankful for Physiatrists

      I’m still seeking answers with my Physiatrist but I know he’s trying to solve my problem.  I can’t say that about many of the other doctors I have seen.  If my problem did not reveal itself in their specialty, all they did was tell me they couldn’t help me.  That’s not the case with the Physiatrist.  Apparently he’s noticed a rupture in one of my cervical discs but before focusing on my Neck he decided to check my shoulders since they hurt a great deal.  We both figured the MRIs would come back normal but BOTH revealed Rotator Cuff TEARS, one of which is apparently quite serious.  While I feel I am finally in the right hands, this Rotator Cuff revelation was probably the nadir of my lassitude because I can move my arms in ANY DIRECTION WITHOUT PAIN and someone with such a Rotator Cuff Tear should not be able to do so.  Additionally, the MRI of my right shoulder in July did not show this Rotator Cuff Tear and I have not exercised since.  The Physiatrist LISTENED TO ME and just before the holiday I had an MRI of my right “Brachial Plexus” hoping to get a clearer picture of the nerves coming from my neck and branching out into my shoulders, biceps, triceps and arms.

      I’m still struggling but I now have Perspective, Hope and a Physiatrist.   Knowing my doctor is as frustrated as I am with my medical problem is strangely comforting for I know this doctor will not leave me hanging.  He will just give financial Crohn’s Disease to my Mom.

*Lyrics from the song “The Knife and Fork” performed by the band, Rockpile on its only released album, “Seconds of Pleasure” featuring Dave Edmunds and Nick Lowe.

Please leave any constructive comments.  Thank you.

Please leave any constructive comments. Thank you.