Opioid Symposium and Chronic Pain

There will be an Opioid Symposium on Monday night hosted by my Congressman. I just found out about it, and I’m scrambling to get facts and figures together so I have proof of the information I will be sharing with them if given the opportunity.

To begin to prepare, I called Congressman Rouzer’s office to find out how the chronic pain community will be represented in this setting and what they hope to accomplish.

I spoke with someone that explained that the symposium would have four panels as it relates to opioid stigma, treatment and resources, prevention and law enforcement. Each group represented will have 2-panel experts that will talk for 30 minutes each.

She said one panelist would be a doctor from our hospital, and he “knows chronic pain.”

I respectfully disagreed with her. Unless the doctor is a chronic pain warrior, he can shed no light on the physical and emotional life transitions that being in pain 24/7 brings.

Knowledge of the disease does not portray us. Having pain now and then does not describe us. He cannot begin to understand the suffering of chronic pain with chronic illnesses unless he has lived with it. He cannot represent us on this subject.

She explained to me that it is a complicated discussion and “unfortunately, everything could not be heard in the 2 hours allotted to the discussion,” and that is why no one that has pain is sharing our chronic pain perspective for us. That is unacceptable that we are not part of the equation of the future of opioids, and I intend to change that in the future symposiums.

She became silent when I asked her if Congressman’s Rouzer knew that people are losing the will to live and some lose the chronic pain battle to suicide because the suffering is too high because of the recent changes with opioids.

Her ultimate response was that I needed to have a meeting with his office. They want to hear my perspective which is a beginning.

What are your thoughts as a person of pain about the lack of representation at this event for people with chronic pain?

If you have been negatively affected by this lack of proper treatment or you know of someone that committed suicide because of the untreated physical pain they are in, please send me the information by my Contact Form so I can share with the people that will be shaping the chronic pain communities’ future. Alternatively, email to    validatingchronicpain@gmail.com

It does not matter if you live in my district or even in the United States. I want to hear your stories so that I can take this information as far as possible. I will keep it anonymous if requested.

Much Love and Many Prayers
Cindy

If you are struggling with living each day with chronic pain, if you wake up and you think to yourself, you cannot do it again…You can. Just keep going.

suicide+hotline

6075d-1508520201278
Text HOME to 741741 from anywhere in the USA, anytime, about any type of crisis.

 

8 thoughts on “Opioid Symposium and Chronic Pain

  1. I don’t live with chronic pain and I can’t pretend I know what you go through every day. But, I am so in awe of your courage to speak up and give a voice to so many who live with chronic pain. I wish you only the very best and stand in support of you.

    Liked by 1 person

  2. I want to thank you for speaking up and voicing your concerns about this entire situation! I do not believe anyone that is making decisions experiences the pain we live with everyday! My pain management doctor canceled my prescription before because of taking anxiety medications. Now he had told me if I got the prescription from a psychiatrist things would be fine, only to turn around and change things all together. At this moment things are fine and I am not allowed to take anything for the severe anxiety I deal with. I have done research on this and everything he said is false! I am not fighting him on it any longer because I would much rather be pain free. I do firmly believe the government officials are doing all they can to destroy patient rights! I am so beyond impressed you are standing up against these people!!

    Liked by 2 people

    • Thank you for your support. We may have a different diagnosis, but we all share one thing – chronic pain. We must begin to work together to change how many hours nurses, nurse practitioners, and doctors are trained on chronic pain, and we need to create more awareness to gain more research on chronic pain because every individual experiences it differently. There is much that they do not know about it.

      The legitimate chronic pain patient would gladly not take opioids if they had alternatives that worked for them and were affordable, but so much of what they offer us is not covered by insurance making it unafforable. And what works for you, may not work for me.

      For that reason, an individualized multi-facet approach of treatment needs to be implemented for people with chronic pain at the beginning of the journey. Living in pain requires the never-ending treatment plan that needs to continuously be created to fit the now.

      The doctors are under an enormous amount pressure also, and rightly so, they are scared they are going to lose their livelihood. They do not want to lose their license. I personally know a few that lose sleep over it.

      I know the stress and pain you have gone through just trying to get the proper medication you need. It is awful that in the United States, you have to choose between very vital medicines.

      Like

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