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notgivingup66

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Patient name: Mark Robin Isaacs 1-31-2018.

Patient birthdate: November 13, 1966

Patient address: Albion, Michigan 49224.

Patient medical History:

- Barrets Esophagus Disease (20+years) **mg Nexium 2X

-Headaches ( all my life) no meds that work currently

-Adjustment Disorder Anxiety with possible depression Lexapro

-High Blood Pressure (most of my life but started meds in the last 10 years)

-High Cholesterol ( most of my life but started meds in the last 10 years)

-Knee with a worn cartlidge ( getting Euflexxa injections) Currently getting the injections Jan/2018-Feb/2018

-Weight Loss: in the last year I have lost 20 pounds and cannot gain it back

-Aug 2017 received my LARA card for Medicinal flower, prior to Feb 2018 I was receiving the medicinal flower by pipe ONLY, with recent events it has come to my attention that with a pipe, I could be inhaling too strong, too long and more direct as to smoking it as a rolled joint! If I intend to continue smoking the Medicinal flower and with the understanding that my Cyclic Vomiting Syndrome is occurring about every 3 months. With that said, I anticipate my next episode will be sometime in March/April 2018 and to clarify I am not looking forward to a relapse! Should I start to smoke the Medicinal Flower again it will be with NO PIPE however as rolled joints!

The reason I did the pipe is I thought it would be more controlled as it appeared to me that I was not smoking as much becuase I would not smoke the whole bowl. I would only smoke two to three times up to four times daily. I feel in comparison to rolled joints where as I used to smoke a whole joint up to three or four times a day. With that said, I smoke so much more via a joint vs pipe. For the time being I would like to add that my smoking the Medicinal flower through a pipe MAY be too direct.

Biased/Unbiased: I understand that Doctors/Nurses/Staff can have differences in their beliefs. In this line of work I have to tried to get an understanding to the Doctors/Nurses/Staff as this is not and will not be going away anytime soon. I am not going to say "It is my right to smoke." It is not about that. It is about my right to be treated morally and with dignity and respect. I want to be understood and treated just as importantly as a patient with say Cancer. I should feel EQUALLY treated just as I was if I had a cold. Treat the BODY not the Medicinal Flower.

I would like to touch base and explain my thoughts in regards to addiction. I will admit in the past I did have an addiction to two commonly used and abused classes or addiction the have lead to past withdrawals. One being the use of perscription medications. Vicodin in the past this drug was an easy go to and easily given out prior to the nations medical Networks restrictions. I am very happy that the method of prescribing such class of drugs has been implimented because through my ordeal of withdrawals it has made me understand the severity the drug had on my body. This was m first and most extreme withdrawal from any class of abuse including Alcohol or Medicinal flower. To reiterate, I have never had a withdrawal from Medicinal flower, any other drug or from alcohol.

On a more serious and very delicate matter in my life; I have personally seen first hand the severity of drugs, whether perscribed or street form, can cause to a family member. On April 16, 2015 my younger brother was murdered along with his girlfriend and her sister. For the simple fact my Brother and his Girlfriend were in the wrong place at the wrong time. Considering the situation between a dealer my brothers Girlfriend sister and her boyfriend, my brother did not feel comfortable with letting her go alone. So it was agreed they went along and well there you have it. It really is not hard to decipher who is the addict and abuser and who is not. Most abusers will not receive medical attention no matter what, in fear they will be forced to seek treatmet. Those types of people really do not see it or feel it is an issue. There is a big difference.. Myself? I care about my health, I always have. That's why I need to count on the unbaised doctors to treat me. On a final note: Due to my Brothers Murder, he was the only one in the family who wore his hair long because in our genes we have Cherokee Indian in us. I volunteered to grow my hair out in memory of him (Jody Arthur Hutchinson 6/10/1972 -4/16/2015) With that said, Doctors/Nurses/Staff automatically assume the sterotype; long hair doing Medicinal flower and very sick, "OHH! LETS NOT TREAT HIM."

In my teens through my late 30's I was an alcoholic ( virtually every day) and did not start smoking Medicinal Flower until I was the age of 26 (usually on the weekends or when I could afford it), during these years I also may have dabbed a bit in cocaine on the weekend. I will admit that cocaine/alcohol is not a good combination. Cocaine may be the happy go lucky drug but is very much so addicting and habit forming as well as alcohol. I have not touched alcohol in such a manner since around 2003 when I met my spouse, Nathan Isaacs who is my rock and foundation and has helped me with my struggles with alcohol and sustance abuse. In the present day I rarely drink. When I do its mostly in the summer time in which I may have a drink or two while doing projects around the house that we purchased together in 2013 and/or if we have guest. In the past I used to get so drunk i could not stand. Today that is not the case. As for cocaine use, I have not touched that since 2003. With this said, That is the severity of my use of drugs/alcohol/medicinal flower my entire life. Let it be known I am not the styerotypical “Hardcore Junkie” that some biased doctors may think I am. The BIASED doctor needs to realize this is not going to go away and is I feel a discrimination, label maker and is very hurtful. This made me feel like scum, a low life scrum who has no life or reason to live. I HAVE EVERY REASON TO LIVE!

I have every reason to live for the following: I am a happily married gay man, who owns a nice 2 story home on Kalamazoo river in Albion in a nice neighborhood. We have 9 dogs, Kori (Shih-zu) Kaci (Boston Terrier) Kati ( Besenji mix), Keli ( Min-Pin), Kiwi (Yorkie), Kodi ( Yorkie), Koni (Yorkie), Kadi ( Yorkie), Keni ( Yorkie); 2 cats Stacey and Sinya; five excotic birds Chiquita ( Blue and Gold Macaw), Jake ( African Grey), and two cockatiels. 6 outdoor ducks. We own 2011 Ford Raptor truck with all the bells and whistles and a 2015 Equinox. A very happy environment which leads to a happy and comfortable life and home. We are members of St Thomas Episcapol Church in Battle Creek, Michigan.

DISCLAIMER::: DRUG MONEY IS NOT INVOLVED. I DO NOT SELL MEDICINAL FLOWER. I ONLY PURCHASE FOR MY PERSONAL MEDICAL USE ONLY.

 



In my studies and findings about Cannabinoid hyperemesis syndrome (CHS) and the Cyclic Vomiting Syndrome (CVS) Both SYNDROMES ARE BARELY KNOWN BY MOST DOCTORS... I believe this is because they CHOOSE not to educate themselves. Thus being Biased towards the patient who needs treatment. I understand this condition could go away if I quit however it has shown medicinal flower helps my pain management and anxiety. Why? Because BIASED doctors are having attitudes that if they do not treat me that maybe I have no choice. Sorry but wrong answer!

Long term follow up is essential to the patient as well as the doctor treating the patient for better understanding of this illness as it will not be going away anytime soon if at all.

From a practioners point of view as well as mine, the major issue of CVS and/or CHS is the LIMITED awareness among physicians which consequently results in DIAGNOSTIC FAILURE AND INADEQUATE TREATMENT. It has been reported almost across the board of all researches that I have read that often there is NO follow up from the patient on their CVS/CHS and I am certain that this is the result of the BIASED doctor who is either AFRAID to treat the condition or they have their BIASED excuse. Which is NOT a caring and comforting doctor. Even for the Facility they work for. In result making the facility that they represent just as much to be at fault or blame. DELAY OF A QUICK, CARING, UNDERSTANDING AND BEING UNBIASED DOCTOR WILL ONLY PROLONG THE RECOVERY TIME THUS CAUSING MAJOR SUFFERING.

I would like to make it known that all patients are NOT equal. Meaning MY TREATMENT will and can be much different than that of another patient. In other words, for the time being until further notice I know first hand that Morphine administered slowly helps me tremendously. Where as Morphine can and will make others sicker but in my case I have been administered Morphine four times over 2 days and is the relaxation that this drug caused to calm my complete innner being. For me just treating the vomiting is NOT enough. Remember to get to know the patient's history. I have anxiety issues and at times it can be unbearable and even though it may not appear to look like I am having an anxiety attack. I actuallty potentially could be silently as my body feels as though I am going insane and squirm within my skin almost as if I want to crawl out of my of it. I am not trying to go to the ER to get "high", I can get "HIGH at home.

In the last year, I have had five or more episodes of CVS and ONLY TWO of those episodes Two Doctors and their associated staff as well that treated me unprofessionally and made me feel ashamed. The remaining episodes those doctors and their staff treated me as if Medicanal Flower was NOT in my system. They TREATED ME for MY BODY, MY ILLNESS not what I put in my body.

In closing I would like to mention that I am very open to discuss this with any Doctors/Nurses/Staff that would like to use me as a Learning Candidate Tool. To help improve my lifestyle and your facility to better handle patients like myself in a more professional and comforting manner. Thank you for taking time to read and consider my thoughts.

I can be reached  by Email: calmfeathers@wowway.com.

Peace be with you always,



Mark Robin Isaacs


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Mark Robin Isaacs
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notgivingup66

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Reply with quote  #2 
I post the above letter in hopes to find ANYONE with similar conditions and concerns as I? Today 2/2/2018 I meet with my Primary Doctor and have already presented the letter to him to read prior to my getting there.
What has worked for you and what was denied you and you know it works because perhaps you had a caring doctor on a previous episode? I would GREATLY appreciate any advice and/or opinions anyone has.
 Thank you and GOD bless! ~Mark Isaacs

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Mark Robin Isaacs
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wynnak

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Reply with quote  #3 
Mark,

Thank you for sharing. Becasue of the studies and research that I have done, as well as consulting medical staff, I will and won't agree with you on their education about CHS and CVS. They are, unfortunately, two conditions with very similar symptoms. CVS is just as commonly mis-diagnosed. I have seen two KIDS in the last month that have been being treated for CVS without proper testing that in fact actually had brain tumors. I feel like we are in the same spot with CHS. Both CVS and CHS are VERY under researched. It  makes it easy to blame one or the other. The medical community does not have the time to look for answers. I see this everyday. Not just on here, but I also volunteer at a hospital where I talk with Parents about the struggles that they go through to get where they are. The biggest issue was how hard they had to push to get someone to realize there was something wrong. The ER is simply not capable to treating CVS or so I think. I see people everyday go expecting a diagnosis and preventative treatment. The ER is not a place for prevention. That needs a Dr outside of the ER. I feel like that can contribute to the issue as well.

But at this point the ER is not a friendly place to get treatment. We have repeatedly learned this with my son.. who was not college age at the time of our struggles. We had to find ways around the ER. Infusion centers, direct admits, even letters from the physicians on what he needed if he went to the ER. The Physicians in the ER are a different breed of Doctor. They do not like to be told how to treat their patients. This causes problems with the letter. It is one of the reasons that we would just go for fluids and not ever say anything about other meds. If you ask for them. You won't get them. 

I have talked with a Dr here that was quoted as saying that she diagnosis CHS based on relief from a hot bath. SO we had quite a dialogue about her just trying to bring awareness to CHS. I discussed with her that it is at the expense of CVS patient treatment. I have talked with several physicians on the basis of MJ dialogues. A few years ago it was pushed for the nausea control and appetite prompting. Kind of like the opioids.. You could walk through the ER and get something before you were seen. Now.. your lucky if you GET an IV at all while your there. It is really a vicious cycle. Now opioids are held back.. instead of pushed.. And now MJ could be the reason that your there, even if it isn't. 

My son was just seen for Pneumonia.. He couldn't breathe and we ended up in the pediatric ER because of it. We weren't even there for CVS related issues.. But the physician saw CVS in his records and spent the entire time telling him that if he smoked, his penis wouldn't work any more.. THE ENTIRE TIME. with me.. his mom sitting there.. He wouldn't touch MJ or cigarettes. He has asthma issues and would not complicate that with smoking but the doctor kept yelling that at him.. YOUR PENIS WON'T WORK..  in a pediatric ER.. We knew that he was just not educated and joked that he knew from "experience" that smoking affects your penis.. because that was why he was a jerk. Bad treatment is not exclusive to the adults.. 

Nor is having awful doctors. We had one that told my son he was faking it and to take a bucket and go back to school. Others that told him to learn to live with puking his guts out every day. We just kept looking for capable ones. 

If the ER is your struggle.. the letter like you listed above should be sent to the ER department head, and patient advocates, Patient experience coordinators. We send stuff to ours all the time.. and send in ANY surveys that medical facilities send you. I have sent stuff up the food chain of command several times. Believe it or not, there are people looking for feedback on experiences. It is sometimes just a struggle to find them.

Thank you for sharing. Let us know if you get a response. 

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notgivingup66

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Reply with quote  #4 
Thank you so much! I do not feel so alone at the moment! I have sent it the the Main patient advocate of the Entire Oaklawn Hospital staffing, I have not heard anything as of yet! OF COURSE! I do have an appointment with my primary doctor and his advocate for his patients who has been on the phone all week with ....
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ginny

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Reply with quote  #5 

When corresponding with the administration of a health system please utilize their names and departments.  These are listed on the web site of the facility.  I would include the CEO/President, in-house attorney, patient quality director, medical director/admin MD, chief/director of emergency services MD, patient advocate and maybe director of the BOD and chief of finance committee.  Direct the letter to one person & cc the others.

For ease of reading, keep a lot of white space in your letter.  The above receive a lot of correspondence, need to read a lot of material and will be better able to review a letter with white space.

Include two or three dates that you are available to meet.  Give a reasonable deadline/ time frame for the admin to respond.

Send the letter by certified mail so you have a receipt.

You might need to follow up with a phone call.  You are not likely to reach the person your letter was targeted to but will reach the admin assistant of that department head. 

You will likely need to be drug free (including marijuana) in order to be prescribed a diagnosis and treatment plan.

The emergency department is for emergency care. Some facilities now have an urgent care tier.  There are often three levels of care offered in ER.  The doctors do not have your patient history.  If they add medication on top of street substance, they not only chance harm to the patient but also losing their license.  Treatment must be assigned a code.  Staff can be called for review if they vary from what is code designated.  ED/ER MDs can be hired from a practice and not direct employees such are hospitalists.  

Mistreatment of CHS and CVS adults is common.  With a letter from your own doctor who is on staff at your ED facility, and directions to contact him/her when you present to the ED/ER should be helpful.  The letter should be in your file.  I am not sure how the staff will react to a hand carried letter (we do have one kept in several places including the glove compartment and bulletin board next to the door but we have never used it).  Some primary care MDs will give their cell phone number to the patient  in case of emergency. 
  

Will your treating MD consult with a CVSA Medical Advisor to try to create a plan for you?  Are you able to travel to consult with a CVSA Medical Advisor?

Have you had the testing to rule in CVS?  

CVS in adults will also usually include more rapid digestive transport-- until a cycle is approaching when there is delayed gastric emptying.  If your gastric emptying is sluggish, this can add to your distress.  Adding in meds without considering the delayed gastric emptying will further delay the emptying and cause more pain, nausea, vomiting.  (Search forBath Boy's posts in the Message Board archives.)

Wynnak is very correct about testing.  We hear about cases where the patient had very classic CVS symptoms but was found to have another, often treatable, condition.  CVS is a functional disorder, not a disease. 






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notgivingup66

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Reply with quote  #6 
Thank you for your input, I have taken notes that I can use in my fight. For the most part ABOUT 80% of everything you listed has already been implicated and just awaiting feed back I call them every other day Because I am done being neglected and feeling like a low life. God Bless
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Mark Robin Isaacs
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notgivingup66

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Reply with quote  #7 
I had my second CVS attack in one week! As you recall I was in the hospital last week for CVS. this Morning at 4:30 a.m It attacked again resulting in 5 40 minutes HOT showers and shoving meds and ice down me ( dissolving *mg zofran, **mg phenergan/promethazine HCL and a crap load of ICE! Lasting about 17 hours! My usual pattern is every three months and always at the same time of the night (1:30a.m) and notice today was 4:30 is this usual to break the three month cycle? What works for you? Please I need help as this condition is NOT FRIENDLY! Thank you and God Bless
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ginny

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Reply with quote  #8 
Patterns do change.  The time of the cycle is usually broad.  Have you been keeping a journal?  Journaling what has happened in your world can be very helpful.  Record barmometer changes, allergies, virus, what you have eaten, what you drank, were you hot or cold, did you change your sleep schedule, changes in meds, were you exposed to fumes, smoke-- just about everything.  

The meds you are on will be furthering the delayed gastric emptying. You might want to try to keep a watch on this function.

Food and drink can be difficult due to the many ingredients especially in processed food.  Maybe keep the list of additives separate and see if you find a pattern there.  For some it can be soy. Or hydrolyzed protein.  Or any number of other additives.  It might not be food as a trigger for you.  Sometimes it is a combination of things-- change in sleep habits, plus a storm moving in, plus excitement of a vacation. Or nothing at all.

One thing you can say about CVS is how unpredictable it can be.

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ginny CVSA Moderator
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notgivingup66

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Reply with quote  #9 
Yes! Finally after a year I Have realized this monster is not going away anytime soon but I have to keep fighting! But yes a Journal is being started as well as I email my doctor of things happening if I feel he should know and he loves getting the emails. But this time around coffee and salt two of my favorite things seem like I dont know nasty not like you know candy. For the most part the journal is more for me than anyone else to see if I can recognize anything... I am feeling better today just a lil sluggish ....
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wynnak

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Reply with quote  #10 
Check out the website for a beginner start of journaling option. There was a set of journaling items that were being offered to CVS patients for a discount. But I don’t remember where I saw it. We just noted everything. Then started noticing patterns. Even can tell when my son is going to go into an episode and occasionally head it off. He starts avoiding Sugar.. WHich I see with a lot. But salt.. the salt increases.. Avoids milk on his own..Juaat have to watch and notate. Your body talks. You just need to listen.
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