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Please Tell your story to the CDC advocate for all of us

Ron has a on going post regarding the CDC "guidelines" which is very helpful. I wanted to start a new one this one is in hopes of getting as many people as possible to tell their story to the CDC. I have communicated with the CDC and I am hoping to get others to not send bashing letters but letters that tell all about your story and how it has impacted your family in this Chronic Pain world. Tell them how pain medication is part of your "blend" if it is plus other things you have done to address your pain. You know just how you  or others have been impacted by changes in being prescribed pain medications. Anything that may change things you never know give them thought to look closer at things and ways to decrease the problem without hurting those who need it. 
If you go to their web-site there is the e-mail address: Email CDC-INFO they have been good to reply to my communication with them but not giving me any answers mostly just refer me somewhere else. 
The reason this came up is a response I got like I was the only one feeling this way and that I did not really understand what was going on. 
You know they need to look closer at what is the reality maybe this will help motivate them it couldn't hurt. 
thanks Sherri

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1

Comments

  • WLLadyWLLady Ontario CanadaPosts: 1,461
    I am assuming this is only in the USA?
    Kathy
    Spine-Health Moderator
    ---------------------------------------------------------------
    Dec '16 T10-S2 fusion with pelvic fixation. Laminectomies L2, L3, L4, L5, facet removal, cages L4-5, L5-S1, severe scoliosis, arthritis and stenosis repair. 

  • Hope3, thank you for posting. I just sent an email to CDC asking that any regulations they issue take into account the millions of Americans who rely on opioids for pain management. Thank you!
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  • HI WLLady you are from Canada such a beautiful place I have only looked at it on the internet and wish I could travel there. 
    Yes the CDC is in the United States but you could write them and tell them if you have ran into any issues .
    Aunt-Reesi 
    Thanks so much for doing that I have to be honest I was really surprised at the lack of interest this post got. I mean it got few reviews but oh well we can only try. CDC might not care if we write to them but it is worth a try. I think I go on too much about the CDC but they were the start of the whole nightmare going on right now and it is only going to get worse. I have always felt that we must speak up where ever we can and I appreciate that you did that. You will have to let me know if and what you receive back from them in response. 
    Have a great day
    Sherri
  • Hi Sherri,

    I applaud your effort in regards to the CDC.  I think most people here think why waste my time when they will not listen to the average pain patient.  We are just drug seekers, everybody know this. lol.  The political climate is such that everyone is jumping on the anti-opiate band wagon.  It is all just smoke and mirrors.  We as pain patients just want to feel better. 

    Some days I hurt so bad I cant sit still.  I get up and pace around.  I hold off as long as possible taking my meds because I am trying to lower my dose or do without altogether.  I am not succeeding.  It just upsets me that people take drugs to get high when so many of us are hurting and cant get what we need for pain control. 

    dmo

  • SavageSavage United StatesPosts: 7,385
    Hello Sherri!
    I would not be too discouraged by your feeling of the lack of comments to this discusión.
    There are many people who are very privacy conscious. I am one of them.
    It took me five years before I felt okay about putting my picture on this forum.
    And it is no where else in Internet.

    This is not saying anything about this SH site and its security, etc....
    It is just how I think... maybe showing my ignorance on safety..i dunno  :) ...but I try to keep low profile.

    Many may make use of your information...others will not. You really may never know.
    Those who may use your information, may hesitate to mention it onto an open forum.
    I don't know all or any reasons...just that I personally would want to keep my privacy on such controversial issue.
    If that makes any sense...?
    Sue
    Honorary Spine-Health Moderator
    -------------------------------------------------------------------------------------------------------------------------
    Please read my medical history at: Medical History

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  • Hi Sue
    I totally understand what you are saying I just wanted whomever chose to to write the CDC with their story in hopes we could make an impact. I never wanted anyone to post a response to what I posted or give their names I based it on the reviews my post got which were few so no interest. It could be that my attitude has been so so negative that when they saw the post they were like "here she goes again" and I would get that completely. 
    They could of wrote to the CDC without anyone knowing their choice as you are right to be private you are a strong person and I have total respect for you and your input.
    Never take anything you say negative but only as support so I appreciate you responding.
    I have made a decision not to post anymore about the CDC and do whatever I can with all the sources there are involved in hurting the ones who don't deserve it. 
    Again thanks for your response I do get it.
    Hope you are having a good day.
    Sherri
  • dmo 
    Thanks for your reply and I agree with you completely, I live that life too in constant pain unable to think let alone do anything not the life we deserve. I pray it all works out but I think it is only going to get so so much worse and as far as one person not making a difference we never know their story may touch a heart or mind.
    Hope you find some relief soon my prayers will be with you..
    Sherri
  • Sherri,

    I took a look at your past posts and boy have you had it rough.  All the accidents are just to much.  I was just talking to Jodee in neck pain section and we both are having a hard time.  I agree things are just going to get worse.  I wish it was not so.  Chronic pain patients should be given the meds they need.  When you get to our age things just hurt all the time.  I get so little sleep now, without pain meds I probably would not make it.  Modern medicine should give us a better quality of life.  I hate the fact that so many people abuse meds and then it makes it hard for the ones that really need them. 

    dmo

  • itsautonomicitsautonomic LouisianaPosts: 2,561
    I have found there is no rhyme or reason many times for lack of or overwhelming response to a thread.  I often think I revolutionized something in my head, type it out and it gets one reply.  Then other times I put something simple and it gets a ton.  
    Do your due dilegence, trust you know your body and question everything if it does not fit. Advocate for yourself and you will be suprised what will be revealed trusting your body and instinct.
  • Aaron you are so right I just thought no one had even read it that shows up in the reviews I think. I just wanted people to read it not even need to comment just wanted them to maybe write to the CDC advocate for all of us. 
    that was all and heck it got on me feeling bad that no one posted which was not the point I was trying to get across. Words and me don't work often times need to really think I guess before I post.
    Anyways that is that done.
    Sherri
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