Nightmare of A Pain Refugee


Hello Luvs,

This Youtube video was sent to me by my friend, colleague and mentor ; Dr Mark Ibsen MD, from Helena MT.

This brilliant talk by Hooman Noorchashm MD

Discussed the nightmare in his life from interacting with Brigham and Women’s hospital, after his wife’s cancer was spread by a surgical procedure( morcellation). 
They endured ridicule and shunning. 
The nightmare of pain refugees is a parallel ethical quandary.  You can watch it here or click on the link below that:
Please 
Watch
Digest
And address your ethical gaps. 
**Who watches out for the patient?
MMA?
Bome?
Public officials?
Elected officials?
AMA?
Journalists?
Activists?
Insurance companies?
Agents?
Mark Ibsen MD. 
Helena Mt. 

Protected: What Happened?


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The Opioid Hysteria Hits Home


Hello Luvs,

I wanted to write to you today to share with you something that I know many of us are dealing with these days. It’s about what happened at my pain management Dr. appointment on 11-8-18. First of all, every 30 days, I have to go and endure this treatment and I live with PTSD. It always rears its ugly head the day prior to my appointment with this Dr. or any new Dr. appointments. I’ll just refer you to my other article “Down the Rabbit Hole” if you need a reminder as to what has occurred up until now.

I arrived at the appointment which was in the late morning this time. I usually go in the afternoon because mornings are difficult for me, with my pain issues. But the past 6 months or so, I’ve had horrible anxiety when I know this appointment is drawing nearer. The closer it gets, the worse I start to feel psychologically and physically with the above symptoms on top of the pain. I decided to make this appointment in the morning because I thought it would not ruin our day so much. Just “get it over with” and be done; get on with our day. But it once again, did ruin my/our day.

I’ve had this pain management Dr. since July 2015, after my other Dr. of 15 years left suddenly. At that time I had been on the fentanyl patch and the lollipops for 10 years. This Dr. told me he would only accept me if I took myself off of the lollipops and I did it. I had to suffer through physical dependence withdrawals. I did it at home with my soulmate, my husband.

I’ve never rescheduled an appointment with him, nor have I ever been late. I’ve never run out of meds or asked for them early.  He knows of every medication that I take or have taken and honestly, I don’t feel like its up to me to have to “remind” him that I sometimes take Fiorcet for Chiari Migraines. He and I had a mutual respect sort of Dr./patient relationship up until April of this year 2018.  But that day everything changed and it turned out to be nothing that I did wrong. He had forgotten that I take Fiorcet and it doesn’t always show up on MAPS (Michigan Automated Prescription Service – *explanation found here*: https://www.michigan.gov/lara/0,4601,7-154-72600_72603_55478—,00.html) because its such a low risk medication and not a high class either.  But whether it shows up on the MAPS is not up to me. Nor is it my fault in any way if it shows up or not, as long as he’s known from the beginning that I’ve been on it for more than 7 years.  This one particular day in April, he started being rude to me for no reason whatsoever. I went to my appointments in May, June and July.  But I was horribly anxious and very “ill” prior to each appointment, due to anxiety and PTSD symptoms.

This last visit was another horrible appointment and was possibly the final one for me. I am done being treated like a criminal or an addict! I’m tired of feeling “put down”! I’ve never smoked or drank; nor have I ever taken any drugs. I received one more short acting script and now I will be tapering myself slowly off of the short acting medication as well. It will be horrible because it’s already horrible. It will be difficult and it’s already difficult.  He lied to me in July, telling me that “in Michigan, Fentanyl patch is illegal for him to prescribe (he is a pain management Dr. and Anesthesiologist MD), unless someone has malignant cancer”. I know this is not true and he told me that “I am smart and should be able to verify this online”.  I checked Michigan law and the fentanyl patch warning on the box. It says only that it is “for chronic long term moderate to severe pain that will not be going away.” If anyone has any idea where I can find this in writing; I welcome that information.

I got a letter from my GI Dr. (*see letter below) because he felt it was dangerous to take me off of the Fentanyl patch. With Gastroparesis, SIBO and Chronic Erosive Gastritis; along with EDS type 4/vascular and more, I am not able to metabolize the long acting oral meds. Believe, me, I’ve tried many things and either was allergic, got very ill, it did not help at all or it had large valleys and spikes. The patch just worked for my pain and it was the best match for me and my multiple co-morbidities.

Yesterday’s appointment he told me that “Chronic pain does not kill anyone”. I told him that I was in my recliner now 16+ hours per day due to the pain. He responded by telling me that my cardiologist should not have put me on Clonidine. I’ve been on it since 2015, but went off of it for awhile in between. He knew this also but apparently it slipped his mind because that must be what’s making me “tired.” But in reality, it’s the pain that’s keeping me down. Also, I only get about 4 hours of sleep on a good night.

My cardiologist told me to take 1/2 of only 1mg at night. He prescribed it for me and said it would help with the physical pain & dependence withdrawals. Thank goodness someone cared enough to help me a bit!

I tried to explain that I had resigned from many activities that I was able to do with the medications. He told me that none of this has to do with the medication for pain being taken away after 14 years. He went on to say that “Susan (you’d think after 3.5 years he’d get that my name is “SUZANNE” not “Susan), you and other chronic pain patients are hostages to the pain medications”. These are the same medications that he was fine with for the 3.5 years I’ve been going to him! He also knew that my history was even longer. I’ve been taking opioids since 2005, in order to have some semblance of a life. But just for the record, I’ll let you know that I tried everything else possible fir 3 years, before resorting to the opioids.

This pain management Dr. has told me all along that he cannot make my pain go away. But he can help lessen the pain by prescribing opioids. When he made the “hostage” comment, I responded with; well “instead , now I’m a hostage to the pain”. Yesterday he told us (my husband & me), that all of his patients still tell him they have pain “with or without the pain meds”. I responded by telling him “Yes, that is true, but I had a life with the meds and I have no quality of life now. The pain medication dulled the pain without ever giving me any kind of “high”. Now the pain is much more sharp, pronounced and at the front of my thoughts. I’m not able to concentrate much or put the pain in another place at the back of my brain.”

I started to explain to him that I have several “Physicians, pain physicians and nurses that are my friends online”.  I added that this past week I was diagnosed after an echocardiogram, with “left atrium enlargement”. I’ve had a heart attack, a CVA and a TIA twice. I have Atrial fibrillation, Sick Sinus Syndrome and a pacemaker since 2003. I’ve never had CHF but that’s what this means. I told him that “chronic pain can kill and under treated chronic pain can make blood sugar and blood pressure rise”, which has been happening to me.  He became very upset with me and started to pontificate about how “each symptom needs to be treated by a Dr. who takes care of that problem.  If my blood sugar is high, I need to go to a diabetes Dr. and if my blood pressure is too high, then I need that addressed by a physician who takes care of that issue. He went on to say that “chronic long term pain does not and cannot kill you.  Only acute pain can possibly make BP and HR etc. rise.” But from Dr. Tennant’s own account in his article (Practical Pain Mgmt. By Dr Forrest Tennant MD , from another article, by Pharmacist Steve Ariens, ( Harmful Effects of Untreated Pain )  and this article that I had written last year (that was also published in Ntl. Pain Report), “Chronic pain can kill” (Untreated Chronic Pain Can Lead to Sudden Cardiac Death ), he is the one who is lying.

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Untreated: The Healthcare Crisis-A Documentary


There are several people and organizations making Documentaries about pain patients getting “left behind” in all of the opioid hysteria right now.  A few that I’ve personally taken an interest in, are awesome. I feel that some Organizations, are trying to sway the chronic pain community into thinking that the physicians who are afraid to treat them now with any opioid therapy are correct in doing so.  There are those who promote techniques such as “grounding”, massage therapy, acupuncture and mindfulness as relief for life long chronic & painful illnesses.  There is a place for some of those things. If it is the patients choice, they could be added to other type of medicinal therapies, such as CBD oil, Medical cannabis, Kratom and/or Opioids.  But alone, these “alternative pain control therapies ” don’t help to control chronic &/or intractable pain permanently.  They also won’t help much when someone is living with high amounts of chronic pain from several illnesses on a daily basis. In my opinion, they won’t help someone who had been doing well on other medication therapies for many years and who suddenly got force tapered or stopped from something that gave them some semblance of a life, for over a decade in many cases.

But there is a new documentary coming out soon and it appears to be one of the best that I’ve seen. It looks very professional and it is in no way a “home video” or a “YouTube” video. It appears to be very well done and I really thought the message was and is clear.  Get the government out of the Doctor and patient exam rooms and relationships. Give the physicians back the power to decide along WITH their patients, what method is best suited for the control of their pain. Keep Hollywood, Andrew Kolodny and Dr. Phil out of our personal medical histories and give the chronic pain community back their lives. We are not expendable just because many are unable to work. Most of us worked for many years and paid into the Social Security program and had to have enough “points” from working, in order to receive the SSDI. So we are not “leaches” nor are we taking from our Government.  Most have been very dedicated to helping in society and being a part of every day life. Many chronic pain patients are former chefs, Interpreters, Secretaries and even teachers. Give us the benefit of the doubt and stop treating us like we are unworthy or expendable.

This documentary “Untreated: The Healthcare Crisis” is directed and produced by Time Thread Studios & their production crew, alongside Lauren DeLuca and Jayne Flanders. Lauren & Jayne are the original founders of CIAAG or “Chronic Illness Advocacy and Awareness Group”. They have a support group online and run a Nonprofit for chronically ill and disabled persons living with pain.  I have donated a small amount of $25.00 to this documentary because I believe in it. If you can contribute in any way, even $5.00 would help. If many people could donate even that amount, it would really help in getting this documentary out to the public.  What is stated in this documentary is true; “What we have is an epidemic of ignorance and fear and its ruining healthcare “.  The epidemic is not an “Opioid Epidemic” but one of instilling fear and panic to the non-pain community so they won’t truly understand.  Not until they or someone that they love is living with daily chronic pain and suffering due to the under treatment of pain today in the USA and Canada.

You’ll see in the movie’s trailer, that even the CEO of Reckitt Benckiser, Rakesh Kapoor has stated that “every major deal we’ve done actually, has created good value for share holders”. They are the makers of Suboxone, Bupenorphrine etc.  If you read a couple of my other articles (About Suboxone, Bupenorphrine & Naloxone and another Regarding Bupenorphrine- Suboxone and also Pain, Politics, Suboxone & Bupenorphrine ) regarding these drugs made for addiction, not pain; I believe that you will see a trail of money leading directly from them to this fake and manufactured Opioid “crisis”. “The goal is profits”, it says in the documentary’s trailer. It is without regard to the millions of chronic pain patients.  This movie will show how the Government is trying to control this “crisis” by limiting the supply of opioids for the pain community. It is stated that 319 medications have “no competition”.  The question arises “Is the FDA dragging their feet?” Also you will see that physicians are afraid to prescribe pain medications and we all know that is true. Then there is this statement, that “the intentional removal of effective pain medications”…. from people who live with daily chronic and high pain illnesses, “that is the definition of torture”.

The link to “Kickstarter.com” and the movie trailer is listed below. You’ll notice on the Kickstarter website that they have goals and various gifts for supporting this film.

Please check out this documentary and lets truly try to get this movie out to the public via Netflix and other venues. This documentary has our hearts and our souls in it. It is, in my opinion, a really effective trailer and the documentary, I believe, will even exceed our expectations.  “The pendulum has swung much too far in the wrong direction”, is another quote from “Untreated: The Pain Crisis” movie trailer. Please help by any donation that you can spare and/or by sharing the link below and/or this article to people in your own pain communities.

Click below, to see the trailer:

Untreated: The Healthcare Crisis Movie Trailer