What My Pain Dr Told Me


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 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.

Becoming Incurable Crowdfunding Campaign


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):

Becoming Incurable Crowdfunding Video

Becoming Incurable Magazine Feature


Hello Luvs

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.

Becoming Incurable magazine feature

Introduction To: Inside Incurable Lives


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:

https://www.youtube.com/watch?v=RjrJnriz6y8

https://www.youtube.com/watch?v=0CuFEgnz8yA

https://www.flipsnack.com/becomingincurable/inside-incurable-lives-issue-1.html?0=becomingincurable

Invisible Disabilities Week 10-15 Through 10-21-2017, You Are “Invisible No More”


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Several years ago I was approached by a YouTube channel called “Invisible No More TV”. They had seen some of my advocacy videos for patients, chronic pain, RSD/CRPS and “invisible disabilities/illnesses”.  They asked me if I would like to be featured on their channel in a short video describing “invisible disabilities” and being “invisible no more’.  I agreed and I’ve been featured on that channel ever since 2012.  I later found out that this YouTube channel is a part of a much bigger organization called the “Invisible Disabilities Association”.  The reason that I’m telling you this today is because this week is “Invisible Disabilities Awareness week”.  I’ve always been a team player for IDA and have always supported them and they have always supported me, since we met in 2012.

First of all, let me explain that an “invisible disability”, according to the IDA website, which you can find by visiting: Invisibledisabili.org, is “a physical, mental or neurological condition that limits a person’s movements, senses, or activities that is invisible to the onlooker.  Unfortunatley the very fact that these symptoms are invisible, can lead to misunderstandings, false perceptions and judgements.”  The Invisible Disabilities organization works tirelessly throughout the year to bring awareness to illnesses, diseases and disabilities that often times seem to go unnoticed.  One week during the year, the third week of October is the time to share your journey with invisible disabilities.  This year, that week is October 15th through the 21st, is “Invisible Disabilities awareness week”.  During this wek, we will be posing many interactive posts on Facebook, Instagram and Twitter.  These are where you can share your personal stories, advocacy, favorite people, places, pets and anything else like this that you wish to share. This is YOUR week to meet new friends, post a video or share  stories with others.  The reason for this is that we want to show you that you are “INVISIBLE NO MORE” and just because people say “but you look good”; doesn’t mean that nothing is wrong on the inside.

This is how this week will play out:  On Monday we want you to “share your story”.  You can post as much or as little as you wish. You can post a photo collage with a story underneath, or you can make a *short and sweet video (about 2 minutes is best). Please note that you can post your story throughout the week, but Monday is the starting date for this activity.  On Tuesday we will be sharing stories of why invisible disabilities awareness is important in your life. You can make a video or a photo collage about your life and the millions of others who live with illness and pain that goes unseen sometimes. If you have the Invisible Disabilites glow-in-dark wristband, t-shirt or lapel pin; please wear it (you can buy them at the IDA website at:  www.InvisibleDisabilities.org).  If you have none or some of these, you can just choose a blue hat, scarf and/or a blue shirt. Invisible Disabilities Association wants to “turn the internet blue for millions living with Invisible Disabilities.  IDA is on  Instagram at: http://www.Instagram.com/invisibledisabilities, on Twitter at: http://www.twitter.com/InvDisabilities and on Facebook at:  www.Facebook.com/InvisibleDisabilities. You can use the tag #InvisibleDisabilitiesWeek.

Just to give you a little bit of background about I.D.A.; they were founded in 1996. Their mission is to “encourage, educate and connect people and organizations touched by illness, pain and disability around the globe”.  They believe that “together we can make a difference in our communities and around the world.”

But now I just want to tell you a little bit about my friend Sherri Connell was an actress, dancer and loved to dance and sing. When she was 27 years old she lost the ability to take care of herself. She was diagnosed with progressive Multiple Sclerosis and she was in a wheelchair paralyzed.  At first friends and family were understanding and supportive.  She has been able to regain some use of her legs with a lot of work and effort. She still finds it difficult to stand and walk around.  But because suddenly the other people in her life could no longer “see” how the MS was disabling, they stopped being as understanding. It was not the wheelchair that kept her from her career, but the disabling fatigue, cognitive dysfunctions, horrible pain and dizziness too.  She could not care for her own daily needs.

Sherri’s husband Wayne, decided to try and tell people; help to educate their friends and family about her disabilities and illness.  He published a few writings from her daily journals onto a website. They thought long and hard and then decided on the name “Invisible Disabilities Association”.  Sherri quickly found out that she was not the only one, because she received numerous emails from people all over the world.  These people reiterated that they too, had felt alone and felt like nobody understood what they were going through because sometimes it was or is “invisible”. Then it became Wayne and Sherri’s passion to help others with disabling conditions by first believing them, and then by being compassionate, supportive and hopeful.

So then, in 1996, Wayne founded the Invisible Disabilities Association (a 501(c)3); with a mision to “Encourage, Educate and Connect People, Organizations Touched by Illness, Pain and Disability Around the  Globe”!  If you have any questions, you can reach out to Sherri Mitchell Connell or Wayne Connell on Facebook, Instagram or Twitter. You can also find them through the IDA website listed above.  Let’s all have a great week of spreading the awareness of Invisible Disabilities, Invisible Pain and Illnesses that go unnoticed to others at times, but never to those of us who live with it on a daily basis.

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Preventable Suicide Crime Scene


Someone help this woman! This is a crime! They treat animals better than people so what’s wrong with this picture? This must stop! People are committing suicide because they’re being denied pain medications! Please watch this short video and it will open your eyes to the TRUE OPIOID crises going on in the United Stated of America! Someone please help this woman and the other 100 million chronic pain patients who are in agony now bcz of what’s being misunderstood as addiction, hyperalgesia and worse! This lack of opioid pain medication to true legitimate chronic pain patients, has to stop! We are not disposables! We are in agony and we are human beings with rights like every living soul! Please learn about the difference between dependence and addiction! Addiction is a non-stop ruminating, craving and a need to get high from taking some kind of medication or drug! People with Chronic pain get “addicted” 1% of the time, due to pain medication! We are “dependent” NOT addicted! Our bodies will go through a physical withdrawal when the meds are taken away! But we do not WANT to need the pain medications. We do NOT get high or euphoric from the opioids! We get to live some semblance of a life outside of a hospital or a bed in our homes! Please help because too many people have died already! Stop being hysterical and blaming real and legitimate pain patients because someone you know died from an overdose! I’m so sorry for you, but don’t punish everyone because you’re in misery! Find compassion in your heart and watch this woman’s story for about 3-4 minutes! Thank you!

Thank

The Happy Challenge


The suffering of the chronic pain patient can be mostly silent, somewhat invisible.  People will sometimes ask “where are the bruises, the medical machines or the marks on your body”?  Let me explain about the “hidden bruises”, the “quiet bleeding inside” and the sporadic silence.  The “silent screams” are more often quiet because we are seen as complaining if we are too vocal.  When we don’t say anything or we look “fine”; then we must be Okay because we appear to be fine on the outside and we are not complaining. We may verbalize that we are tired and then they say “Oh yes, I’m tired too! I know what you mean. It’s normal to be tired at our ages. You just have to work through it!” They don’t realize that we have to “ration our spoons” throughout the day (see the “spoon theory” by Christine Miserandino, at http://www.butyoudontlooksick.com).  There’s no sense trying to explain it to them because it is not a battle of words that we have the energy to argue about.  Most people who do not live with and deal with daily chronic pain, just cannot understand or fathom the idea that just taking a shower and getting ready for our day, can use up so many of our “spoons” or so much of our energy.

We may agree to attend an event or a family outing if at all possible.  We don’t intend to break a “promise” but when we go against our own best judgement; we may then suffer.  Sometimes we go, but cannot stay very long; they say we are “phony”.  We try to hide how we are feeling, but sometimes even with our greatest strength, we have to submit to the pain and fatigue. We need to listen to what our bodies are telling us.  That’s when we start losing friends and family members. We start getting invited to social events less often. Though we really wish to be invited and truly want to go, if we possibly can.

Next, we have the other chronic pain patients who have knowledge of the “Spoon Theory” and some of the similar feelings that we all experience daily.  Then for one reason or another, maybe because we are not all at the “same place at the same time”; we may be judged again by our peers. It hurts, because we all experience the chronic pain and fatigue, but we may each handle it differently. I try not to judge anyone for doing what they need to do to take care of themselves. When you only “know” someone through social media, you don’t really know them or their daily struggles. You only know what they choose to share.  It hurts when someone judges me for appearing to be active on social media. It’s true that I am an Ambassador for the U.S. Pain foundation, I’m a freelance writer, a blogger, a mentor, a patient leader for WEGO health and I am a health advocate. But I don’t have to do anything on any day or days, if I don’t choose to. I may be in my recliner for 20 out of 24 hours some days. But that doesn’t mean that I cannot encourage, counsel, connect or give TLC to others.

If I do an event, then I am literally “down” for several days afterwards. It is worth it to me, just to stay as positive, helpful and useful as I possibly can be.  I also don’t admonish others who are not in the same place as me.  I remember times when I didn’t feel as happy inside and I still have periods like that. The ups and downs are pretty normal within the lives of chronic pain patients.  Sometimes when in horrible pain physically and/or mentally; people generally think that others should be able to see or feel things the same way as they do.

Now, I have a different strategy for dealing with the pain. I utilize every possible venue to express my own pain and my reaction to the changes that it has made in my life and our lives. I am not always positive, nor am I constantly happy and upbeat. But I do try to be positive as often as possible on Social media. Sometimes people’s lives depend on it. Naturally, we all have our darker times; but I try to rarely share those publicly.  I’m not saying that I’m right or this is right for everyone. I’m just sharing how I deal with my own personal pain.

I felt the need or the urge to write about this because I received a private note from someone. It really hurt at first and I was crying. I participated and usually do participate in the various online events and “photo challenges”. It may be for U.S Pain foundation, for WEGO health or for RSDSA etc.  It’s just therapeutic for me and I enjoy being a part of these online events. If I can cheer up one person then it is worth it for me.  If I can show one person, a light at the end of the tunnel, then I have given them hope.   Someone sent me this private message and it said;   “Not to start anything but….why do you devote so much time and trouble to your blog, your websites, groups and writings?  Why don’t you just deal with the pain, like the rest of us? YOUR “Happy challenge” was yours not mine…. I guess we don’t see it the same way. I just try to get thru the day w/the least amount of pain possible and thank God when I awaken the next day.  No drugs, no docs, just PT and pain shrink….”.  Like I said, at first I cried and I was hurt by these words. For a few moments, I felt like it was and has been all for nothing.  But it’s not for nothing. We are not all in the same place at the same time.  There are stages of chronic pain, just as there are stages of grief; they are pretty similar. But one thing for sure, I don’t put others down for taking or not taking medications or if they choose to use an SCS or a pain pump (for which I’m not a candidate, due to an Immune deficiency disease). I feel strongly about doing whatever is necessary to achieve the best quality of life that I can possibly have.  I don’t choose to go to as many Dr’s as I once did. I try to just visit the specialists that my life depends on.  I don’t just “wait for the next day to arrive”.  Though I do thank God every day, for giving me life. I also don’t do PT after 9 years of doing it and I don’t go to a “pain shrink”.  But that is my choice.  I do take a normal dose of Opioid pain medication, of which my life “depends on” now.  I’m not “addicted”, but “dependent” on this medication. But guess what? I was able to attend my youngest granddaughters’ first birthday party because of this.  I GOT the pleasure of attending a U.S. pain conference this past weekend.  I got to do it and got through it, because I am able to take a pill that helps me get through these events.  Yes, of course I suffer still, for a few days afterwards, but I have the memories and so do the “little ones” and the other people who I got to spend time with. I also got to experience other persons like myself, who want to make a difference and try to help in the world of chronic pain.  It’s not for everybody and that’s OK.  We are all different, it’s supposed to be that way.  I don’t particularly enjoy things like gardening or cooking. Some people couldn’t imagine life without those things. I am me and that is OK.  I cannot please everyone and it’s alright.  I’m not crying any longer about the message. Instead I feel badly for the person who wrote it.  They are in a darker or more sad place than me. I will be there for them if or when they are ready.

It’s a difficult kind of life to explain when you look fine on the outside, your photos look like everything is “normal” on the outside; but my body burns and aches even through the smiles. I’m just like some of the other chronic pain patients, but I choose to outlet my pain in different ways. Nobody says that my way is the right way, but it’s the right way for me to express my pain and try to help others in the process.