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.
Please watch this short video and see how this film producer is bringing awareness of Chronic pain and Chronic illnesses to the big screen!
If you prefer to visit my advocacy YouTube Channel to watch this, you can visit: WWW.YouTube.Com/Suzydukettes….
BUT my newest Youtube video is right here for you to watch -and it’s only about 4 minutes Long: I hope you will enjoy, learn & help in any way possible with the crowdfunding campaign, at: http://www.seedandspark.com/fund/becomingincurable
Here is a very short 4 minute video: (Thank you for Watching):
I’m really excited to share this with you today! The US Pain Foundation has teamed with Victoria Suan, the producer, creator & Director of her Documentary “Becoming Incurable “. I’d written to you about 6 weeks ago regarding the feature film etc. But today I want to share this online magazine that she’s made to compliment the video compilations and her Documentary!
I am the middle of 3 persons being featured in this online magazine. I’m being featured for the illness of CRPS. This is thrilling and just so very exciting to be a part of this beautiful project to spread awareness of chronic pain and illness.
As I was listening to the Vox.com podcast a few days ago, I heard the voice of PROP’s president, Jane Ballentyne, surprised and complaining about how she’s been treated recently. After hearing about her belief regarding the “acceptance of pain”; several pain patients wrote negatively to her in the comments of articles and a podcast. Some people even wrote to her employer at the University of Washington and wanted her fired, she says. I’m wondering, why she is so surprised? But obviously those who agree with her and think this is a good idea, have not lived with daily, unrelenting, horrible pain such as the kind that comes with illnesses like: CRPS, Ehlers Danlos Syndrome, Ankylosing Spondylosis and many others.
What I don’t understand is that in these modern liberal days of persons not having to accept anything else about themselves, why are pain patients being forced to “accept” their pain? Today in 2017, people are allowed to change their gender, nationality and their bodies. There’s nothing wrong with a man becoming a woman, or a Caucasian man becoming a Filipino woman; as I saw on the news the other night. In 2017, there’s nothing wrong with a woman getting liposuction on her hips, if she feels they are too big, or breast implants if she feels those are too small. If other human beings are “allowed” to do all of this, then why are chronic pain patients supposed to or urged now, to accept their torturous, horrific daily 24/7/365 state of living with chronic pain?? Now days nobody has to “just accept” anything about themselves. Something is really “fishy” here? In my own personal opinion, I feel like the United States is trying to kill off it’s weakest and most vulnerable chronic pain patients. Why do you think this might be the case? Again, my thoughts are that it is because they are concerned that the “baby boomers” are going to deplete the Medicare/Medicaid system and there won’t be anything left soon. Why not “get rid of” the sickest and most weak of Americans to save some money? I don’t know this of course, but it sure is a scary thought when everyone else is allowed to surgically change everything about their gender, race and body; but the chronic pain patients are now not allowed to have the simplest pill that can help to lower their chronic pain. Suddenly, opioids are now being considered evil and all must be destroyed. We must learn to “accept our pain”. I don’t want to just accept my pain, anymore than someone who feels that they were born the wrong gender, should have to stay that way forever and just “accept” it.
So I’ve been researching other countries and speaking to other chronic pain patients around the world, thanks to the internet. I was discussing the “opioid crisis” with my friend in Israel. He sent me a piece of information about a University of Michigan Coursera. You can look at what I looked at here: Teach-Out: Solving the Opioid Crisis/Coursera. He told me that he had been seeing what’s happening in the USA and how concerned we are about the topic of Opioids. He wanted to know if this was truth or not? Naturally, you must take the course to learn about what they want you to know. But just from the introduction that I read, it is packed full of disinformation. They tell the same “lies” that were exposed in Andrew Kolodny’s article “The Opioid Epidemic in 6 Charts”. Josh Bloom, a journalist and PHD, exposes how Kolodny, those that follow him, and some of the media (it seems), are changing the truth to their advantage. In his article, The Opioid Epidemic In 6 Charts Designed To Deceive You , Josh proves how in Kolodny’s orginial article, The Opioid Epidemic in 6 Charts, deceives us with false numbers. The first sentence that Kolodny writes in his editorial states “drug overdose deaths” are about 60,000 annually. When we see that we immediately think that he’s talking about prescription pain medication overdoses. But, Josh Bloom points out that actually 30,000 people were killed. This included all opioids including heroin. The actual true number of deaths just from prescription pain medications or opioids used for chronic pain; was about 17,000. Also, in Mr. Blooms article as cited above, he states that the number of 17,000 is “half the number of accidental falls”. But 17,000 is not exactly right either, because that includes all opioid overdose deaths which were in combination with other medications. The true death by opioid pain medications is about 5,000, according to this same article. That is much less than Kolodny’s original “60,000 deaths”, scare tactic, from drug overdose.
Also, why are we not looking into the deaths by alcohol? According to the NIH (National Institute of Health), the NIAAA (National Institute on Alcohol Abuse and Alcoholism) and this article Alcohol Facts and Statistics, “88,000 (62,000 men and 26,000 women) people die from alcohol-related causes annually”. This makes alcohol the third preventable cause of death in the United States. Do you know that the first and second causes of preventable deaths are from tobacco and poor diet/physical inactivity? So why are we not talking about the Alcohol and/or tobacco related death epidemic? Do you want to know why? I know I sure would like to know the answer. I know that my friends in other countries are telling me to come and live there. They don’t understand why this is happening over here in the USA? The friend that I was referring to earlier on, who lives in Israel; cannot believe that this is happening to the people he knows here in the USA. He even said that he sent me the information regarding the Coursera, because he “had a feeling they were lying”. He asked me “Do you have any guess why they are doing all of these things to hurt all of you?” The only answer that I could come up with is, “Money”. The reason that I stated above, regarding Medicare/Medicaid and the baby boomers. I was embarrassed to say that to my friend, but I still did. His response was “this is horrible”. He said that “in Israel you can get as much as you need; as long as it is opioids and not medical marijuana”. It is totally opposite of that here in the USA. In Israel, the primary care doc can prescribe what he believes will help the diagnosis of his patients. Imagine that! Oh wait, that is how it used to be here in the USA also! But not anymore! I asked my friend if his primary or pain Dr. helps him more? He told me “My primary helps me, of course! She helps the most. She is nice, caring and gave me the pain medication with out any pain doctors advice. On her own, because she is a DOCTOR herself…..you know? AS it should be”! Also, as I feel it should be in the United States once again.
I was so touched by this email that I received from my friend and colleague, Dr. Mark Ibsen, M.D.. I wanted to re-post this here in my blog, because I thought you would enjoy reading it.
**This is a guest blog post written by Dr Mark Ibsen MD***(He’s referring to this article: https://www.npr.org/2017/11/25/565729334/gaslighting-how-a-flicker-of-self-doubt-warps-our-response-to-sexual-harassment)
When I read this,
I could see how pain patients are often gaslighted
Out of their story, their reality
By the domination structure.
Not always male ( think Jayne Ballentyne)
Very similar to the harms associated with
Sexual harassment/abuse that is so currently in our national focus.
Whether male or female
Pain makes us doubt our own reality.
This is what makes it such a terrorist.
Can we piggy back into the abuse conversation?
Can we make the case that those with arachnoiditis, for example
Were harmed by needle jockeys
Dealt with dismissively ( no one will believe you)
Cowed into submission by being threatened with loss of their medication?
Cancer patients who survive,
Yet can’t get pain relief for their neuropathy,
And get the message:they should be grateful to be alive…
Wounded warriors who return from Iraq or Afghanistan with
Severe injuries and ptsd
Who must reinvent their entire persona?
Maybe there’s something useful in being with this issue in a new way…
Or any kind of harassment.
I’ve been gaslighting myself for years in response to the attack on my practice by
The Montana BOME,
Along with the ptsd from hearings where my
Personality was attacked
My integrity impugned
My mental health repeatedly called into question.
Of course the financial disaster of
Loss of my business
Has been great,
But the greatest impact has been on my confidence
Open hearted empathy.
Overcoming these self doubts,
While a daily regimen
Has taught me to be more authentic
Has shown me that being Raw upgrades my intuition and healing skill set,
Making a wider range of emotional states available to me, as well as the opportunity to transform these states.
So- yes Pain IS an F/N terrorist.
While I have yet to develop gratitude for
Mike Fanning and the Board
Dea agents Addis and Tuss
Pharmacists who refuse to follow the CSA and refuse to fill my Rx
Others who ripped me off when I was reeling,
Have learned the validity of Winston Churchill’s statement from WWI:
” nothing so enlivens the soul as to be shot at without result”
It took me 4 days of the Thanksgiving holiday to get to this place. Thanks to friends
Mark Ibsen MD
We see so much in print these days about the “addicted”, the “overdoses”, the “bad guys” that are posting incorrect information all over the internet and about the opioid crisis. Of course it seems as though only those of us living with daily chronic pain, truly understand that the “crisis” is indeed one of the pain patients “falling through the cracks”. Being-untreated or under treated and then committing suicide or having to spend the rest of their lives in agony. This is the true “Opioid Crisis”. But then I saw a short clip of a very well spoken, kind young woman named Victoria Suan. She was asking for volunteers to help with an upcoming video compilation called “Inside Incurable Lives”, that she was doing for Social media. She was going to follow a few stories of persons living with daily chronic pain and show how it affects their lives. I responded to her request and sent in some video clips; as did several other chronic pain patients. The first Social media video compilation called “Inside Incurable Lives, Episode 1”, came out in September 2017. In the second video compilation, Victoria was asking if chronic pain patients would be able to tell her “What one pain medication, would they not be able to live without?” Secondly, “If your Dr. Could no longer provide this, what would you do?” The second video compilation project, “Inside Incurable Lives Episode 2”, focused on the voices of pain patients and their views regarding access or lack of access to opioid pain medications as well as medical marijuana. Episode 2 finished and posted in October. I was happy to be able to participate in both of these projects. I’m trying to help with this crisis in any way that I can. Later, I will be providing the links to these 2 video compilations for Social media. But first, I want you to introduce you to Victoria Suan, and her feature Documentary “Becoming Incurable”.
Victoria lives in California and since High school, she was interested in becoming a filmmaker. She graduated from Sacramento State with a Communications degree. She started creating short documentaries during college and then afterwards she decided that she wanted to make a feature documentary. She started researching blogs and video’s on YouTube. From there she discovered the chronic illness community. Victoria found through her research, what she describes as “a wonderful support network of people who are giving one another validation as they deal with the frustrations of chronic pain.” She told me that she was thrilled by what she saw, and inspired. She decided to create a feature documentary about “chronic illness through intimate stories of real people living with chronic pain”. Starting out with her cousin who lives with Dystonia and a friend with another incurable condition, she then found her third featured person for the documentary. She describes the 8 or 9 months of filming as a “wonderful journey”.
The two video compilations on social media, that I participated in, were an extension of her feature documentary. Victoria then made a Facebook page and it became a platform for the chronic illness and pain communities. She has become a “voice” for those of us who live with pain & chronic illnesses and she is showing our side of this painful journey. She also wants to do whatever she can so people learn about her feature documentary.
Before we get to the two video compilations in which the chronic pain communitiy on Facebook participated; I’d like to share some of Victoria Suan’s views about the opioid crisis. I feel that it is very important to listen to the views of others who are neither patient, politician nor physician. Now that she has become close to several of us from the shorter video’s; I asked what her thoughts and feelings are, regarding what is happening to the chronic pain community? Her response was very heartfelt and thoughtful. Victoria told me that regarding the opioid crisis, she “really feels for the families and individuals that are dealing with addiction. Sadly, there aren’t enough ways to treat addiction without affecting the millions of chronic pain patients in our society.” She told me that she’d read that Governor Chris Christie blames hospitals and physicians for starting this opioid epidemic. She wondered “how would a person dealing with chronic pain feel about this? How ignored and betrayed they must feel. Is it wrong to eliminate a torturous level of pain by taking medication as prescribed by Dr.s?” My own feelings are that politicians seem to not really care as long as it doesn’t touch them or their own families. Victoria agrees that they just don’t want to listen to this. She feels that as chronic pain patients, we should not have to fight so hard just to be heard, really listened to. But we are trying to fight because our very lives depend on it.
Victoria feels that it is “sad that one governors personal opinion can do more to influence legislation than the voices of millions of chronic pain patients.” She is happy that there are News outlets such as this and others, along with non profit organizations, such as the U.S. Pain Foundation; that are educating the public about chronic pain. Victoria thinks that the film industry; especially a film called “Unrest” that is touring worldwide; and her documentary, “Becoming Incurable”, show that efforts are being made to educate and inform the general public about chronic pain.
Lastly, I wondered what she has learned from doing the 2 video compilations and the documentary film. She mentioned that she hadn’t realized before doing this, how difficult it is for people living with chronic pain to “do normal tasks, such as getting out of bed and/or going to the grocery store”. I think that it taught her and hopefully will teach others about “Invisible Illnesses”. She says that actually seeing these people in their pain, made her “truly acknowledge what life is like with chronic pain and illness”. She feels that these projects taught her that each person has their own unique story to tell. She has figured out through these projects, that we are united in our pain yet each of our situations vary widely. I want to share with you in Victoria’s words, what she wants people to learn from watching “Becoming Incurable”. She hopes that people “will see these video compilations showcasing pain patients and stand with organizations that are fighting for the chronic illness community. If our government continues on this path of neglect, I’m certain that chronic pain patients will be forced to fight a human rights issue. I think this has already begun, as we are learning the numbers of chronic illness patients committing suicide. It is important that we speak and act now in order to invalidate a campaign that deems anyone taking opioid medication as a suspect of the addiction problem.
Here are the links to the 2 video compilations of “Inside Incurable Lives” by film producer, Victoria Suan: