Crohn’s Disease & Perspective

Erythromelalgia – How to Treat it?

Please Leave Comment

If you have anything to share re: Erythromelalgia, please comment. Thanks.

Secondary Erythromelalgia – 1st VISIBLE Environmental Disease?

oct-9-2016-environemntal-diseases
October 9, 2016
      I’m beginning to think that Secondary Erythromelalgia (EM) is akin to the body’s unregulated and grossly exaggerated “defensive” response to toxins or abnormal systemic conditions or diseases. Technically it manifests as both a neurological and vascular disorder but reversing it or medically treating it to the point where the patient is no longer handicapped by it or even free from its devastating nerve pain is presently not within the capability of traditional medical means. Even diagnosing it in a timely and accurately fashion is extremely difficult. Patients in constant or flare-like intermittent severe EM pain too often must play Medical Detective to “run down leads” in hopes of more clearly identifying their symptoms so they can then search for doctors with even minimal EM experience to correctly diagnose them.  But being “treated” still seems to be a burden the EM patient must bear and with the proliferation of patients sharing self-treatment protocols in different Facebook and Yahoo EM Groups there is actually progress being made in that regard. However, professional medical identification, authentication  and self-treatment oversight is sorely needed, yet for too many, or most, if not all EM patients, it is still elusive in this day and age when applied transcendent medical research has converted what were formerly  life-threatening devastating forms of cancer into manageable life-style altering chronic conditions. 
    Logic would seem to indicate that addressing, treating and hopefully repairing the underlying primary “offensive” toxin, systemic interrupting event or harmful systemic condition would extinguish all “secondary” responses and conditions like EM but that typically or often is not the case with EM because nutrition, genetics and environmental factors conceivably makes each case of EM different such that individualized treatments or individualized modifications of treatments are required despite it’s initial “secondary” etiology.  However, Secondary EM is NOT an “Invisible Disease” like Crohn’s Disease and in fact it’s “calling card” is the “Redness” discoloration it causes to the human body.  While that is a superficial symptom of EM and it is the INCREDIBLY INTENSE NERVE PAIN which debilitates EM patients, it is that UNMISTAKABLE “Visibility” which makes me wonder why traditional medicine has been so INEFFECTIVE against such a palpably obvious and uniquely and severely painful disease?    
    After reading about the bedridden or wheelchair-bound EM-suffering of people who were formerly such healthy and active people, I begin to wonder if EM is a horrific byproduct of “our times” like taking prescription drugs as quick fixes or being affected by the environment and it’s waste products without even knowing it b/c certain people have a genetic predisposition which makes them vulnerable to various toxic environmental byproducts. I know this sounds too “creative” and not “medical” enough to rely upon from an etiological perspective but it would explain why in this day and age so many people suffer with such a painful and VISIBLE medical condition as EM which is impervious to all traditional medical treatments. It’s as if Secondary EM could be the first formally recognized Environmental Disease of our time.
     That said, I think Secondary EM must be “embraced” by the patient (assuming he or she is physically and emotionally capable of doing so in light of EM’s potentially devastating effects) so that he or she could formulate a methodical diagnostic strategy to first identify and treat the “primary” condition, toxin or toxic event and if that is impossible or difficult (or it is successfully treated but the Secondary EM remains) he or she should also begin to treat the EM with basic nutrition to become generally as healthy as possible and also start experimenting with the Nutritional Supplement Protocol indicated by Dr. Jay S. Cohen on his website. To that end and has been pointed out to me by several experienced and smart EM patients, experimenting with Dr. Cohen’s Nutritional Supplement Protocol should be done one (1) at a time b/c the seemingly individualized etiology of EM may make one (1) or more of these Supplements ineffective or even harmful to different people and therefore they need to be able to identify it so they can remove it or lower its dose, if that is possible. This similarly indicates that that “dose” of each Supplement is likely different for each EM patient and therefore methodical experimentation is required.
     Finally, I was very recently contacted by a close friend of mine who happens to be a top executive and scientist at a very prolific pharmaceutical company and they want to commence a formal research study on EM. When I know more details and I am permitted to share them (and at some point I’m sure that will come to fruition b/c they will need EM patients), I will do so. While EM sucks and the stories of experienced EM patients upsets me in a way I’ve never experienced, there is HOPE b/c I suspect there are many more EM patients than Pharma has been aware of (e.g. the misdiagnosed and the un-diagnosed) and thus there may be a lucrative (or at least altruistic) opportunity for these companies.  That’s why I am determined to raise the awareness of Secondary EM in accordance with what I have written above. If Secondary EM winds up being labeled as the first VISIBLE Environmental Disease, then I think Pharma will take note regardless of its status as a “Rare Disease.” Accordingly, HOPE is a reasonable state of mind for someone with Secondary EM.   
Please feel free to share your thoughts on this issue. Thank you.

Please feel free to share your thoughts on this issue. Thank you.

 

Secondary Erythromelalgia diagnosis journey

rh-3

October 5, 2016 – “Secondary” Erythromelalgia or EM makes my hands and fingers so red that they BURN like Frostbite. EM is also referred to as “The Man on Fire Syndrome” because it literally feels as if your hands and fingers are on FIRE. It is extremely RARE and INCURABLE – at least by traditional means. Lovely.

October 7, 2016 – I have not been able to post much lately because from June, 2016 through September, 2016 I was busy trying to be diagnosed and treated for what started out as “pins and needles” in my fingers but quickly turned into increasingly SEVERE Frostbite-type burning pain in my hands, fingers, feet and toes.  I started with a Pain Management Doctor thinking it was the beginning of an orthopedic problem (likely involving my Neck) but also simultaneously consulting with my inimitable longtime gastroenterologist Dr. Mark L. Chapman because he had “successfully” treated my extremely complex case of Crohn’s Disease  ever since I was finally correctly diagnosed in 1984.
      Just like the “Kardashians” are to blame for people becoming seemingly credible career celebrities with no discernible talents other than their licentious proclivities, Crohn’s Disease has been the “sex tape” which launched and fueled my career as a chronic patient and patient advocate. My very complex case of Crohn’s Disease and its many peripheral manifestations often presented mystifying and even life-threatening issues which confounded doctors all over the world except one (1) located on the Upper East Side of Manhattan. Dr. Mark Chapman’s proven track record in solving ALL of these byzantine medical problems since 1984 made him my obvious choice to quarterback what I suspected was going to be a protracted “diagnosis journey” with these extreme symptoms.

 

This picture is from September, 2016 and shows how Erythromelalgia or EM affects my feet. The red-hot feelings dominate my toes, much like they do my fingertips, and they stab the soles of my feet and make my heels feel like I am walking on such badly blown-out metal-on-metal wheels that sparks fly every time my heels touch the ground.

This picture is from September, 20, 2016 and shows how Erythromelalgia or EM affects my feet. The red-hot feelings dominate my toes, much like they do my fingertips, and they stab the soles of my feet and make my heels feel like I am walking on such badly blown-out metal-on-metal wheels that sparks fly every time my heels touch the ground.  Exaggeration for effect.

      But the business of healthcare has changed and now doctors are limited to opining on only their myopic specialty as if my incurable, autoimmune disease and the potent steroids and biologics I had to take to thwart it are as inconsequential to the accuracy of my future medical diagnoses as the size of Kim Kardashian’s derriere is to her continued popularity. But Dr. Chapman has always been a “problem-solving” doctor and his genuine care for me has always “eclipsed”  (sorry, the more accurate choice of word is “trumped” but …) the short-sighted objectives imposed upon him by the understandably profit-driven, policy-making Suits. To that end, Dr. Chapman patiently listened to my symptom descriptions as he observed me with a Google-like mind of medical knowledge from all he had seen in his 60+ years of experience treating and solving the most severe and complex Inflammatory Bowel Diseases (IBD) cases.  I think for the first time since I was a scared kid diagnosed with an incurable disease I couldn’t even SPELL, he saw me in a uncontrollable state of pain exhibiting borderline fright.  The seriousness of my situation was palpable in the Exam Room and neither of us needed to articulate it especially in light of our mutual reference point of “seriousness” being established sometime during the 200+ hospitalizations and 20-25 surgeries we had been through together over the past 32 years.
      Consistent with his mandate as my gastroenterologist, Dr. Chapman explained that his participation could only be very limited because Crohn’s Disease did not appear to be on the menu.  I understood but for a moment after he spoke I had an unfamiliar feeling of hopelessness.  It sucked. He must have seen the color deflate from my face with a pace only Tom Brady could have matched so he spent a few minutes explaining to me what likely lied ahead given my symptoms. Perhaps most importantly, he reiterated what he had joked about at the onset of the exam that something very strange was going on inside my body. His re-emphasis was our “code” for me to continue trusting what my body was trying to tell me, as I always did, much to the dismay of most other doctors who never considered even for a nanosecond that I might know more about MY BODY than they.
     But the diagnostic journey Dr. Chapman described necessitated pursuing my fate with Neurologists and Rheumatologists which made me very uncomfortable as my past experience had proven neither medical specialty to be populated with “problem-solving” physicians like Dr. Chapman. But to their credit they proved to be very helpful during this diagnosis journey. But as is usually the case with extreme symptoms, I also encountered a few doctors who simply refused to believe the severity of my unrelenting and increasingly debilitating nerve pain which I could only somewhat mitigate by putting absolutely no muscular intentions into the “positioning” of my hands.  But unless I chose a career as a hand model, this pain management strategy always came undone “at hello” so …

 

oct-7-right-hand

September 9, 2016 – This picture highlights the pale and dark color changes in my right palm which belies the excruciatingly painful interactions of my palm and any object such as a car steering wheel when I attempt to securely affix my hands to it. Please also take note of the “tight skin” which actually shows the “ridges and valleys” you’d typically only see in a Fingerprint. Thank you Erythromelalgia. 🙂

      As Dr. Chapman had told me, the diagnostic endgame was a Small Tissue Fiber biopsy so I established a relationship with a New Jersey neurologist hoping he would proceed in that exact manner. He was very accommodating as he empathized with my extreme discomfort and pressing need to be diagnosed and treated. He performed an EMG Test during my first appointment and set up the Biopsy for a few weeks later. Then he told me the Biopsy results would arrive approximately 2 weeks after that. Feeling as if the most promiscuous of Fire Ant colonies had Summer Share Rentals in my fingertips, toes and soles of my feet, I kept hearing in super-slow motion the word “weeks” emanating from my very compassionate physician’s mouth as I almost panicked at the thought of being absolutely clueless for at least another month as to the cause of the most debilitating pain I had ever experienced. But it was toward the end of the summer and my doctor did the best he could to accommodate me around what I figured were vacation schedules of a variety of dedicated healthcare professionals working with, and for, him and eventually on my behalf.
      Tom Petty nailed it when he sang, “the waiting is the hardest part,” and the next few weeks were some of the darker days of my life. The pain continued to intensify and expand into my feet and toes but what really scared me was not knowing why. But Doctor “Google” was at the ready with alacrity and I must have typed my symptoms into its search box 50 different times until my carefree ability to type was no longer. The closest I came to a logically sounding diagnosis was Raynaud’s Syndrome but no one described it as involving “Frostbite-type” or “Burning-feeling” pain and I just knew these keywords would most certainly appear somewhere within the description of whatever was causing me to lie on a couch all day during beautiful 90-degree late summer days with tears in my eyes each time I had to use my hands or fingers to operate the TV remote control.
      The first depreciation of my Rock-Star-Lifestyle became apparent when I couldn’t type at my computer without piercing pain because depressing any key on my computer keyboard with my “Frostbitten” fingertips made each stroke feel like I was pushing my fingers through glass and making them bleed uncontrollably. I also began dreading having to shower and shampoo my hair because each time my palms touched even a strand of my hair to apply the shampoo it felt as if someone with a hammer had driven a rusty nail through the palm of my hand.  If it were only a finger, each encounter with a strand of my hair felt like a coordinated attack from sharp needles which wouldn’t quit until they caused my fingers to bleed uncontrollably. This same exaggerated neurological response occurred during the rote of daily life whenever I involuntarily rubbed my chin and my fingers were met with the steely knifes of a 2-day growth.

 

rh-4

October 1, 2016 – Along with the other bizarre symptoms, Erythromelalgia or EM has created this “white area of demarcation” from my mid-knuckles to my fingertips IN BOTH HANDS. When I first noticed this “pattern” I thought I might have been bitten by some venomous spider. I showed this to several doctors during two (2) trips to a very prominent New York City hospital Emergency Room (ER) and not one of them had ever seen it before but that didn’t stop them from treating me like I was the ER Circus Freak despite being in excruciating pain. Sadly for traditional medical professionals, when I posted pictures of this amongst the Erythromelalgia online community, I received empathetic messages almost instantly as this was a very common sight to THEM.

      The Biopsy was conducted before Labor Day with results to follow in a few weeks thereafter.  However, I knew something was seriously wrong when the typing, shampooing and stubble pain I had half-joked about with my friends had become REAL.  It felt like I was in a relationship with the pain and I never took its severity seriously enough but now was forced to because it began “seeing other people.”  I also began feeling incredibly intense discomfort from not having enough skin to cover my hands and fingers.  I know, I had to say that one several times to myself out loud before I told anyone else.  With the color of my hands, toes and feet changing colors, I thought I was losing my f’n mind. But this was no figment of my imagination as this pain tripled at nighttime when my “digits” began to swell from rubbing the tips of my Frostbitten fingertips against the small liquid crystal touch screen of my cell phone so I wouldn’t have to confront the traumatic terror ingrained in the part of my mind which knew the Fire Ants recklessly fornicating in the infinite number of cells and tiny nerves in my fingertips would not be too pleased if I interrupted them by going old school computer keyboard on them.
      The swelling seemed to stretch the skin even more to the point where I felt as if I was walking around with two (2) Yogi Berra-sized catcher’s mitts as hands. The skin was so tight that I felt like “The Michelin Man” whenever I tried to hold a fork with my portly fingers. Driving all of the pain, I thought, had to be those dark blue, purple and black super-sensitive veins and nerves running through my hands, fingers and feet which for some reason, apparently unbeknownst to Dr. Google, had become as aggravated as Donald Trump tweeting at 3 AM some time in 2016 after learning that the Girl From Ipanema who had won his 1997 Miss Universe Title was now an American citizen set to tell the Press the truth behind her unique-looking brown-skinned son with the orange hair.

 

August, 2016 - My right hand as Erythromelalgia or EM makes my Nerves incredibly more sensitive.

August, 2016 – This is my right hand as Erythromelalgia or EM makes my nerves/blood vessels incredibly more sensitive. In fact, if you look closely I think the New York City Subway System Map is embedded in the palm of my hand!

      The saving grace, as usual whenever the seriousness of my health issues got to Defcon 1, was Dr. Mark L. Chapman.  I regularly communicated with him via email since early June when I had initially sought his medical care for this “Frostbite/Burning” severe pain problem. I figured everything was tied to my Crohn’s Disease in one way or another so therefore he was clearly the man to see.  But, by his own admission, he was not and  I had to see a Neurologist and a Rheumatologist to best solve my problem. While I did do that, it was Dr. Chapman’s almost weekly “supportive” emails which kept me afloat and eventually provided me with the perspective I needed to confront the perpetrator of all my pain. This is a very special man because time and time again over the past 32 years he has stayed engaged with me, wherever I lived at the time, e.g., New Jersey, Boston or Santa Monica, and in every hospital in which I had to do time, even at the prestigious Mayo Clinic in Rochester, Minnesota when he answered my SOS call with: “What can we possibly do for you here at Mt. Sinai Hospital that they can’t do for you at The Mayo Clinic?”
      I couldn’t answer his question out loud because I didn’t want to be disrespectful to the doctors taking care of me at The Mayo Clinic but the answer really was: “Mt. Sinai had YOU and they don’t have one of those here at The Mayo Clinic.”  When he reads this I know he will laugh out loud but it turned out to be DEAD-ON. Sure, my relationship with this man is predicated on the Doctor-Patient Relationship but after 32 years and now the onset of this very challenging nerve/blood vessel problem I now understand that he somehow always instinctively knew he might be among the few medical practitioners who could provide lifestyle-saving answers to the often extremely complex medical problems which were to plague me ever since I was diagnosed with Crohn’s Disease in 1984.
     In this instance, I somehow knew to keep him involved and all summer I sent him updates and pictures of the color changes I thought were diagnostically significant and I tried as best I could to vividly describe the pain and different debilitating sensations hoping something I wrote would trigger a diagnosis or a helpful thought from a man who has gotten me out of several life-threatening jams when other doctors had literally given up and even we had exhausted all of the plays in the Playbook.  It was then when he calmly would call an “audible” or draw up a play in the dirt and just like that I was back in law school, back at work or smiling with my friends as if I never had to worry about choosing my quarterback when time was running out, everything was on the line and we had to go the length of the field to pull out a victory.
      The day before Labor Day Weekend in 2016 Dr. Chapman emailed me with what he believed was my diagnosis. He modestly wrote that his diagnosis was purely speculative and that I needed to have it confirmed by a Neurologist and/or a Rheumatologist but he was confident I had a rare disease he had never seen in his sixty (60+) plus years practicing medicine but it was one he had read about. He wrote that he thought I had “Erythromelalgia” or “EM,” which is also known as “Man on Fire Syndrome.”  This diagnosis was subsequently confirmed and the Small Tissue Fiber biopsy came back ABNORMAL.  My quarterback had come through again but given the diagnosis he is not going to be able to lead me to victory this time.  That is on me but I’ve been coached by a VERY special man.

 

Dr. Mark L. Chapman and I after one of the many Videos we made together during which I attempted to share with the world his inimitable experience and knowledge treating the most complex of Inflammatory Bowel DIsease (IBD) cases.

Dr. Mark L. Chapman and I after one of the many Videos we made together during which I attempted to share with the world his inimitable experience and knowledge treating the most complex of Inflammatory Bowel Disease (IBD) cases.

How I plan to battle Erythromelalgia (“EM”) is explained in a short video which is presently being edited.  I will post it here on my Blog as soon as it is completed. I anticipate that to be before Wednesday, October 12, 2016.  I appreciate you reading my writing and just ask for your patience as these days it’s a bit harder for me to “put pen to paper” but as you will see in the EM Video, I view this as an opportunity of a lifetime. Thank you. 

Please feel free to constructively comment or to share any relevant thoughts or ideas. Thank you.

Please feel free to constructively comment or to share any relevant thoughts or ideas. Thank you.

He’ll be right in to see you

"He'll be right in to see you."

“He’ll be right in to see you.”

“He’ll be right in to see you.”

      Your doctor appointment is scheduled for 5:30 PM and at 5:25 PM some very nice 30-something “small-business office attractive” receptionist leans into the waiting room calling out your name. For a nanosecond you think you’ve spotted flirtation in her eyes when it’s just the effects of that rare occasion when an attractive woman says your name out loud.  Still, she reminds you of a girl you knew in school so you hold on to this ridiculous fantasy and watch her walk and lead you to your Exam Room.  She walks well and has a great sense of direction.  You arrive at your Exam Room.  She tells you where to place your things, whether or not you need to disrobe and put on the patient gown (which almost falls apart as she hands it you because it is made of f’n crepe paper) and then she leaves you with a smile and an expectation of “immediacy” when she says: “He’ll be right in to see you.”

     You contemplate reading the People Magazine lying on the sterile-looking counter, apparently left over from a previous patient, but you remember her encouraging words as you mentally discard the need to kill time like the other schmucks, some of whom had to wait 90 minutes in this small Exam Room, in which, incidentally, you have convinced yourself no man has ever been subjected to one of those intense, comprehensive prostate examinations where it is always necessary to use a bunch of tissues as soon as the doctor leaves the room so that your ass can once again feel your underwear.  Before you choose a place to sit down and wait for the doctor, you nevertheless look for evidence of any such discarded tissues because such a stealth action is never done with consideration for the next patient and you would hate to sit on a surface in this prostate-exam-friendly room upon which a rushed patient left his DNA.

     You see the sterile white table paper on the black exam table and figure it has to be immunized against anything so that’s your spot.  After making too deep of an indentation sitting down on the paper, you suddenly feel “cold leather” and realize you’ve ripped the paper exposing your jean-covered “cheeks” to micro-organisms from every possible genetic configuration and medical procedure including the aforementioned “ass-to-underwear” maneuver.  You look at your watch and it’s now 6:10 PM.  WTF happened to your 5:30 PM appointment and to Ms. Office Attractive’s proclamation that: “He’ll be right in to see you”

     You try to skillfully get off the Exam Table but when you place your right hand on its edge to get some leverage, the paper rips again. Stuck in this ridiculous story, you push open the door into the business-area and you spot your secret admirer and ask, “What’s the story?  My appointment was for 5:30 PM and it’s now 6:15 PM.”  Time suddenly stops and everything seems to be moving in slow-motion like in that “Seinfeld” episode with Keith Hernandez and the “second spitter theory.” You watch your favorite Doctor Office Receptionist digest your probing question and with Donald Trump-like “tremendous” enthusiasm, she extends the boundaries of condescension and replies: “He’ll be right in to see you.”

Please share your stories about condescending Doctor Appointments!  Thanks.

Please share your stories about condescending Doctor Appointments! Thanks.

 

 

NEW/FUTURE Crohn’s Disease Treatments

     (Please note these “new” and “future” treatments discussed by Dr. Chapman apply to BOTH Crohn’s Disease and Ulcerative Colitis.  Ulcerative Colitis is not listed in the title above simply due to space constraints.  Dr. Mark L. Chapman is the only remaining practicing gastroenterologist who was trained by the late, great Dr. Burrill Bernard Crohn, who in 1932, along with Drs. Leon Ginzburg and Gordon D. Oppenheimer, first identified the disease which eventually bore his name. )

      There are at least over 160 genes involved with the formation and progression of Crohn’s Disease.  Some scientists have identified over 200 of such genes and if that proves true, Crohn’s Disease would involve more genes than any other disease.  But in this March 29, 2016 Video Interview, Dr. Mark L. Chapman of the IBD Center at Mt. Sinai Hospital in New York City discusses the recent breakthroughs in genetics, epigenetics, molecular biology and immunology which are giving rise to new and future, safer and more efficacious, Inflammatory Bowel Disease treatments such as Stem Cell Transplants, JAK Inhibitors, Stelara, Interleukins 12 & 23, Anti-Adhesion Strategies involving ICAM-1 or MadCAM1, IL-23 inhibiting drugs, Fecal Transplants and even Medicinal Marijuana.

     (The Video starts with Dr. Chapman answering a very specific, but important Viewer Question from a woman with a complex Crohn’s Disease case who wonders about her ability to take the Biologic drug Entyvio after she had contracted the fungal infection “Histoplasmosis” while taking each of the anti-TNF Biologics.)

Please share your constructive comments regarding New & Future treatments for Inflammatory Bowel Disease. Thank you.

Please share your constructive comments regarding New & Future treatments for Inflammatory Bowel Disease. Thank you.

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?