Dear Mr. President

Dear Mr. President

By Suzanne Stewart

March 12, 2017

President Donald J. Trump
The White House
1600 Pennsylvania Ave.
Washington, DC. 20500

Dear Mr. President,

My name is Suzanne Stewart and I urgently need your attention please, Mr. President. I’m so sorry for all that is happening these days that is making it so difficult for all of us and for you as the President. I know goodness will prevail. I need your help on behalf of millions of real and true Chronic Pain patients. Please don’t stop reading this letter now because of those words. For some reason they seem to make people nervous. Let me explain briefly, what I am asking from you.

Mr. President, so many chronic pain patients in these United States of America are really and truly in horrific pain on a daily basis. I live with a horrible nerve disease called “RSD/CRPS” and aka “Reflex Sympathetic Dystrophy” and “Complex Regional pain Syndrome”. It is #43 on the McGill pain index; only superseded by terminal cancer and about as painful as the amputation of a finger without anesthesia. There are many very real painful illnesses out there and I have several of them, following a car accident in 2002. A man ran through a red light and totaled not only my car but my body as well. I have had 8 surgeries and after the 7th, I was diagnosed with RSD/CRPS. In 2013, I was supposed to have a pacemaker replaced, but instead I ended up with a total pectoral muscle reconstruction surgery. The Dr. tried to head off “full body/systemic” CRPS, but it did not work for me. I now live with full body, systemic, CRPS disseminated and severe. I also have several herniated/bulging cervical and lumbar discs with Degenerative Disc Disease, Arnold Chiari Malformation I, with Chiari migraines and Polyneuropathy in Collagen Vascular Disease (which is equal to Ehler’s Danlos Syndrome type 4-Vascular, or EDS-4) and there’s more but I don’t want to belabor this subject.

There are many Americans who live with daily chronic pain illnesses and we implore you for help. The CDC and DEA and “Big Brother” Pharma companies are trying to “hurt” the American chronic pain people. We need your help and the help of Tom Price, the HHS person, who you chose because he would do a good job, right? Please help us, your pain community to not lose the medications that many need so badly. We seem to be losing our medications because of heroin addicts being “lumped together” with us. Every time a celebrity dies of an overdose, they blame it on the pain meds and not the misuse and abuse of pain medications along with the use of recreational street drugs. You are an NRA spokesperson and you believe in the constitutional right of the “right to bear arms”. Then you need to believe in the right of the established and true chronic pain patients, to have the right to take the appropriate pain medications that have been prescribed diligently by their Physicians and/or Pain Physicians. No Dr. should be afraid to prescribe Opioid pain medications to their patients because of repercussions from the CDC or DEA. But our Physicians are leaving in droves because of all of the “uproar” about an “Opioid epidemic”. Senators, Joe Manchin (D-WV), Amy Klobuchar (D-MN), Angus King (I-ME), Heidi Heitkamp (D-ND), Tammy Baldwin (D-WI), Bill Nelson (D-FL), Chris Murphy (D-CT), Elizabeth Warren, (D-MA), Maggie Hassan (D-NH), Jeanne Shaheen (D-NH) and Richard Blumenthal (D-CT) proposed a “Budgeting for Opioid Addiction Treatment Act” (aka “LifeBoat Act”), to force chronic pain patients pay a tax, called “the Lifeboat tax”. It would have meant that pain patients would have to pay .01 cent for each milligram of Opioid pain medication that they take on a daily basis! This money was then going to be used for addiction treatment centers! This is not right, just as that tax on medical devices was and is completely wrong and punishing people for being ill.

Mr. President, we are not addicts and we are not “addicted” to our medications. We only use them for pain control. If you ask most true chronic pain patients, they would tell you that they hate taking the medications and wish we did not have to depend on it. This is the key word, sir, and that is “dependent”! We are not addicted to our medications and we do not get cravings nor do we get “high” from them. An addict seeks out their drugs at any cost and looks forward to taking them because of the “high” they get. As pain patients who take our medications responsibly, we get some kind of relief from the daily chronic pain that we live with. Imagine that just taking a shower, takes so much out of you because of the pain? Just showering and possibly doing our hair and brushing our teeth makes it so that we cannot schedule anything else that day! We are “dependent” yes, but NOT “addicted” to our medications. We need the physician / patient relationship to choose what is necessary and best for our pain control. The P.R.O.P. Dr.’s who are against Opioids and others against them, are just misinformed and some want to make money off of us. Some of those against Opioids for pain control, don’t want us to take them because they own treatment centers. They get money from chronic pain patients who are then treated as “addicts”. Some pain patients go there because its a last resort and nobody will help anymore. So many Dr’s are leaving and afraid because they aren’t able to prescribe anymore and not even for the true persons living with real and true pain on a daily basis.

Mr. President, please help us. I understand there are people who die from overdoses. But those people need help with depression maybe? They are fearful that the life that they have known with a little bit of pain control from the Opioids for years, is going to or has been ripped away from them? People are being told that they will have to go to the Dr or the pharmacy every 5 days in order to get a prescription for pain medications. Well that is just ludicrous because most of us can’t even drive or drive very far. We don’t feel well enough to get out and go to the Dr’s office every 5 days. Would they ask a Diabetic to do that? NO! They would not do that to a High blood pressure patient or a heart patient either. I take Beta Blockers and I cannot go off of them abruptly, or I could die or have a heart attack. People are being taken off of their Opioid pain medication during one visit to the Dr’s office. Often it’s a Dr. that they’ve gone to for years and where they are known and believed. But because of this “fake fear” in the people and the government right now, Dr’s are taking away the little bit of life that some have left by taking the pain meds away.

I am an Ambassador for the U.S. Pain Foundation, sir; and I am a patient health advocate. I do public speaking, write for the National Pain Report and I am a patient leader for WEGO health. I am completely disabled and depending on the day, I use a wheelchair, walker, motorized scooter or a cane. I described several of my health issues above, but there are more, in that I had a CVA in 2006 and an M.I. in 2005. My pain is much lessened due to the medication that I take. I have been living with several high chronic pain illnesses since 2002. I’ve tried so many different medications and many other treatment modalities. I also have an Immune deficiency illness that prevents me from being a candidate for a Spinal cord stimulator or a intrathecal pain pump as well. I don’t think anyone should be FORCED to have an invasive surgery in their spine or anywhere for that matter; when a pill with little side effects could help them so much. But you see, the money is in the surgeries and the Spinal cord stimulators and pain pumps. Mr. President, I am imploring you to help me and the 100 million other chronic pain patients in the USA, who are diligent and who take the medications responsibly. Please help us to be allowed to continue our pain medication regiment. The only thing that these proposed strict rules will do; is to turn chronic pain patients to the streets and then many more will die from getting the wrong kind of pain medications mixed with “who knows what”? Its just as the NRA says that the “bad guys will still have guns” if you take the guns away and make them illegal. The good pain patients who are left with no other choice; I feel, will be desperate. I’m begging you sir, please read my letter and please talk to me if you’d like. I’ll do anything to help my fellow pain warriors and myself. We need your help to understand that we are “chronic pain patients” and not “addicts”! We are just real people with true high pain illnesses. Please have Mr. Price to talk to pain patients like me and listen to the U.S. Pain Foundation’s ideas. We believe that something needs to be done. I don’t mind if they make medications that cannot be crushed, melted or changed in any way. That would help to keep the drug addicts from melting or chewing it in order to get high. But please see the difference between pain patients and drug addicts. Help us, the true chronic pain patients not lose our medications that give us some semblance of a life with our families.

Sincerely,

Suzanne Stewart

Ambassador, MI- U.S. Pain Foundation
Author/Blogger, Patient Mentor RSDSA, Patient Advocate,
Patient Leader WEGO Health

CC: Tom Price, Health and Human Services
200 Independence Ave SW,
Washington, DC. 20201

Suzanne has lived with a Systemic CRPS & several other chronic pain illnesses since a MVA in 2002. Prior to being disabled from chronic pain, she was an Interpreter for the Deaf at a hospital & worked with Deaf children. Since 2005, Suzanne’s been a patient Health advocate, support group leader & Mentor.  She continues doing these things today, but also does public speaking, awareness events and she’s a Writer/blogger & an Ambassador for the U.S.Pain Foundation. 

For entertainment she creates advocacy videos & uplifting ASL cover song videos on You tube and she writes in her own blog Tears Of Truth (Suzydukettes.wordpress.com).

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Authored by: Suzanne Stewart

There are 56 comments for this article
  1. William Dorn at 10:17 am

    Please a petiton we must be heard.

  2. Heather at 5:20 pm

    Thank you! I have written. The President as well as CDC, DEA, FDA and local representatives. As a pain ambassador myself I will keep fighting. Thanks for sharing. I just saw this and shared it to about 6 groups adding up to about 600 thousand people, so hope the signature start rolling in. I signed and wrote a long note as well. We will continue fighting this fight. We have to let our voices be heard.

  3. Terry at 6:54 pm

    I as well wrote to the President and local and state representatives with no reply to any! Our government has turned their back on us with chronic pain.
    I have had this horrible disease for over 25 years and not one single minute have I had a day without pain. It amazes me that people whom haven’t had to endure what we with legitimate chronic pain are being put in the same category as drug addicts! Us as patients are tested each month and if we were to fail that test we would be cut off our meds! We are held accountable each month and this cut down or off will not deter a true addict as they are wanting a high and will do anything to get it!
    I just don’t understand the thought processes of makeup no us suffer even more than we already are!

  4. Robert Ivan at 6:13 am

    Hello Suzanne,

    Thank you for taking the time to write your letter. Our community represents one of the single largest constituencies in the country and we continue to go unrecognized.

    As a fellow Michigander, I have written to the former President, our State Senators and Congressional Representatives. I feel the most insulting response (if you in fact receive one), is a form letter. The worst from Debbie Stabenow which was so condescending. I reside in the 10th district and my Congressman is Rep. Paul Mitchell. I have to say that after calling his local office and explaining my concerns, within a week I received a call from one of his staffers in Washington. This person afforded me as much time as I required ( 45 minutes) to fully articulate my position. Everyone should take the time to contact their respective representatives, because we count.

    I also signed your petition and encourage everyone to sign it as well. I attached the following comments; I watched both confirmation hearings for Dr. Tom Price for Director of Health and Human Services. During both (2 hour) hearings, Dr. Price reiterated numerous times his dedication to remove government from the Doctor/Patient relationship. It would seem since his appointment, the direction of government intrusion has intensified.
    Please Mr. President, I ask that you recognize millions of the citizens you’ve sworn to protect.

    Once again Suzanne, my personal appreciation for your efforts on our behalf.

  5. Michelle Garcia at 7:40 pm

    Awesome Kathy! I am also sharing my heart out, on facebook, email, and verbally. We gotta keep up the fight with Suzanne. I am so frustrated and at the end of my tolerance with pain and no one wanting to help us. My life is falling apart so fast. No friends, family, and heading for divorce. No one understands daily fight with pain except ourselves. If I hear one more time that I am crazy, an addict, or it is all in my head I am afraid I will just end this madness once and for all. Thank you for sharing the petition.
    Hugs Michelle Garcia

  6. Kathy Malles-overcast at 9:14 am

    I have signed this and also shared it on a number of groups I belong to on FB, groups for chronic pain suffers, groups for people with fibromyasia, groups for people who have back issues. I shared it everywhere I know of, for people who live in pain! Thank you

  7. Laeannne Farnsworth at 3:51 pm

    I signed the petition.

  8. Michelle Garcia at 10:03 am

    Thank you.🙂, Suzanne!♡♡ So far I got 2 people to sign our petition. I appreciate all you do for us who suffer from chronic pain daily. God Bless you.🙂
    Hugs,
    Michelle Garcia

  9. Suzanne B. Stewart at 9:07 am

    Hello Everyone!
    I just wanted to let you know that I’ve shortened this letter to one page ! I hope it will be seen now and i will try to make it into a petition for us all..thank you for the input

  10. Cynthia at 9:42 am

    I have really appreciated your input n knowledge. If we could all ban or work for the greater good this would be wonderful. I’m willing!!

  11. Michelle Garcia at 7:54 am

    Hi Wanita1,
    Here is my email: mmaybee77@gmail.com, please email me a copy of the stated paperwork, treaty, from your comments. I would really appreciate it so I may take with me to my doctor who is making me suffer! Thank you and look forward to your email.
    Michelle Garcia

  12. Wanita1 at 11:25 pm

    Ths is a copy of some of the legislation that was written and part of the Treaty. —-7. Failure to provide access to pain management violates the United Nations 1961 Single Convention on Narcotic Drugs declaring the medical use of narcotic drugs indispensable for the relief of pain and mandating adequate provision of narcotic drugs for medical use.
    8 The UN Universal Declaration of Human Rights (1948) (Article 5) states: “No one shall be subjected to torture or to cruel, inhuman or degrading treatment…”
    Comment: Deliberately ignoring a patient’s need for pain management or failing to call for specialized help if unable to achieve pain relief may represent a violation of Article 5.

  13. Wanita1 at 9:35 pm

    I found out that it is definitely illegal to refuse to adequately treat pain patients using opiates as part of that treatment. It is also illegal to impose a limit on the dose. If a patient needs it, they should get it. It is illegal in any country who is part of the United Nations who signed the original agreement in 1961. This is an International Treaty and has been reviewed and updated through the years.For a country to implement policies that leave patients in pain is to allow them to be tortured (as written in the document). That means that it is also illegal to intimidate and threaten doctors who treat pain patients. I downloaded a document that I found deep in the site of the UN but I cannot find it again. I can email anyone who wants a copy. Bring parts of it with you to your doctor and make him/her aware of appropriate legislation. It may help to relieve their anxiety. In the meantime, if you do not want to post your email then please click on this site, the document might be there somewhere. National Pain Center can also email me for a copy and send it out to you all if they agree.

    http://www.who.int/medicines/areas/quality_safety/guide_nocp_sanend/en/

  14. Jean Price at 9:35 pm

    Suzanne…you really address all of our comments! Which adds to the discussion! So I wanted to make sure you understood what I said and meant! Of course, I do NOT think YOU are writing this letter…or any letter….to just get “drugs”!! Actually, I don’t believe any one who writes letters to protest this current mess is doing that!! Yet I do believe “we”…who are in pain and require pain medication to function…are often collectively seen this way by many people now! By some in our government, some doctors, the media, many in the public…basically any of those who don’t understand persistent, daily, life-limiting and life-threatening pain…or what it takes to function, even at a reduced level! I hope you didn’t feel I was saying this about you personally!!! I was not!

    One other thing I mentioned….my comment about stressing whole families are involved when a person has pain…comes from talking with my doctor recently…and several comments he made. He evidently sees cancer as a “family” disease…yet NOT pain! I was shocked at this! And it opened my eyes to the probability of others not realizing pain is such a burden impacting our FAMILIES, TOO, That’s why I think this is important to address…because our poor care now touches so many lives, not just our own! I remember when the emphasis on families was just beginning in health care…to include them even, in care plans, discharge planning, and doctor visits! It’s seems we may still have some work to do about this where pain is concerned! At least at some point along the way.

  15. Disgusted at 12:47 am

    I have had the same issues. 3 failed fusions and still in constant pain. Treated like a criminal. Forced to beg for help. My latest doctor will not prescribe meds without my getting shots! I had shots for years and the arthritis and build up of boney material does not allow the shots to have any effect. He had me signing up for shots without even having seen an X Ray. I want to get off the meds. To stop being dependent on these doctors who feel we are drug seeking criminals. Doctors put me in this position.
    Neurologist lied about cutting C8 nerve. Said I “came in paralyzed”!
    Am I a complete idiot here? Then he wrapped a surgical steel wire around bottom of the C’s. I’m allergic to Nickel! He refused to tell me the material. This is a major hospital! Someone sent me a piece of the wire with no note in an envelope and it tested + for Nickel.
    Now, I’m getting this doctor saying,
    “No shots – no meds!” I’m so disquested by the medical “profession”. Lies and greed. Fusions should not be done anymore. Just result in more surgeries. I’d love to see them be in pain and beg for medicine. Clueless and no compassion. Of course, many often fall prey to their own medicine and get protected by their own. These are just doctors practicing medicine. Yes, the body will adjust to meds. It’s not the same as addiction. I want to get off them and tell them to fly a kite. I will be in horrific pain. Power is misplaced. There must be a better way. Don’t even start me on Big Pharma! 1,000% profit mark ups on supposed R&D. US is behind and lacking. Wish I’d gone to Germany for the first surgery. They stopped doing fusions because they result in more surgeries. I hear Cha Ching!!!
    Let them experience it for one week.
    The power of the script. Makes me want to leave the country. Disgusting.

  16. Michelle Garcia at 8:04 am

    Yes, Sandra, I am almost at my end. I am losing the battle. Chronic daily pain, heading for divorce, filed complaint against doctor, and unable to get adequate pain meds. I as well, go days without a shower do to pain or have the energy to find another doctor or insurance and have gained weight from lack of movement. I suffer from failed back surgery from a broken back and nerve impingement. I have had 7 surgeries, numerous MRI and CT scans, and many pain injections that are only a bandaid for the major issues, which show issues that no one wants to address. They are more worried that I am on opioid s and stopping them! They want to give me antidepressants. The last one nearly sent me to the hospital causing me continued migraines that felt like my head was going explode adding more extreme daily pain. Pain is going to kill me! Please Mr President hear our cries for help! Hugs to everyone who are suffering.

  17. Maryann at 8:20 pm

    Dear Suzanne,
    Thank you for writing such an amazing letter to our President! If anyone will listen it would be him. I have suffering with full body systemic RSD/CRPS for over 15 years now.
    It is, unfortunately, becoming harder and harder for me to secure my pain medicine. Each month becomes another challenge. As you said we are not addicts but we are definitely treated as such!
    Please tell me what I can do to make our voices heard so that we can be assured that we can get our medicine because this can not continue.
    Respectfully,
    Maryann

  18. Diane Bavaro at 5:41 pm

    Wonderful letter. My son suffers from chronic pain. Hope this letter and all the comments will get President Trump’ s attention.

  19. Amy Monahan-Curtis at 5:08 pm

    Thank you for the vital role I hope this letter can play in explaining the crisis our pain community is in due to harassing and harmful regulations and legislation. Not only is our quality of life at stake, but many patients’ actual lives are at stake with the only solution increasingly becoming street drugs or suicide as proper pain control is being restricted and eradicated.
    I hope and pray addiction and pain control can be seen as two different issues by our public officials who have no idea what it is like to live a hell on earth of chronic pain and then also be turned away without any mercy by the system that is supposed to protect its citizens.

  20. Sandra Gurrola at 2:41 pm

    Suzanne that was a very well explained letter. I wish I didn’t know this president could care less about our problems. I don’t know where we turn, but if you got a response or help from him I would be surprised. I’m so sorry for everyones pain, I read the letter from Michelle Garcia, above, and i feel very worried that she is at the end of her tolerance. The pain doctors that have thrown almost everyone under a bus. What will happen next. I am very afraid for everyone being cut off their necessary meds. I have heard a doctor on the news from one of the so called best hospitals in our area say he plans to start his surgical patients with ibuprofen. THIS from a surgeon who surely knows better. I have a problem that has required surgery several times. I live in terror of needing one, with no pain relief.. My current pain is from a back issue, but something else is causing severe leg pain at night, undiagnosed. 3 MRIs of my back, and many attempts at alternative therapy, i am in pain all the time. My pcp finally gave me one vicodin a day. I have to save it for night or not sleep. I can just about bear it, but my life is down to needing to sit a certain way, limited almost no driving, nothing..So Suzanne, I can only imagine with your issues, how you are managing. I know I could be much worse off, but yet it us bad enough to keep me unable to do much more than very light housework, and showering. 2 years ago I was in the gym 4 times a week. I have gained weight, believe I have an undiagnosed immune disorder or something strange going on in addition to the low back and leg pain. I hardly have the energy to talk to friends, much less seek out new doctors.. Anyway, I wish you all peace and pain relief. Somehow.

  21. Wanita1 at 7:27 am

    Jean Price—I agree. What you wrote is my point exactly. Passive aggressiveness is getting nothing done. As far as I can find, no progress has been made at all, if anything we fell even further behind. As you said, this has been going on for years now.

    I am able to use the laws here for a complaint but it sounds like the court system will need to be used in the US. Some lawyer somewhere would be will to take the case and may even file for compensation on behalf of pain patients as it is clearly discrimination. Once a lawyer is found then a GoFundMe page can be started.

    Letter writing is great for letting each other know we understand but I doubt many politicians, if any, read them.

    Suzanne—I posted links to the Declaration of Montreal above which was signed in 1961. The WHO has also recently addressed it due to reduced access in countries like ours. They may be of help.

  22. Laeannne Farnsworth at 10:04 pm

    Ty. You are so sweet to take time to acknowledge each of us individually. You care about others and you understand our suffering. All I can say is “FINALLY” someone gets it, someone cares and understands. I love you already. I look forward to your email, my new friend. 😘 Goodnight, sweet dreams. LaeAnne Farnsworth

  23. Suzanne B. Stewart at 5:56 pm

    Hello everyone I will be brief in my responses, but I wanted to mention pretty much each person by name and respond:

    1) Alessio, thank you very much! I totally agree with you re: the fact that chronic illness is real and those of us with these illnesses should be believed & we should be able to have our private dr/patient relationship.
    2) Fay, let’s hope that you are wrong. Remember when Obamacare started the opponents claimed there would be death panels-lets pray this will not happen. Also, just because it is a football player or the President, doesn’t mean that they get what they want. Men don’t always get what they want, just ask my husband! Lastly, I hope that your wish isn’t that anyone suffers as we do, because I don’t wish this pain on my worst enemy.
    3) Thank you so much Cynthia , you are very kind and I appreciate your kind words
    4) Wanita1, the letter was as brief as it could be, because I had to mAke it “real” etc. Secondly, I’m 55 and I was injured in 2002-15 years ago! I’ve already talked more than enough to more than enough : psychologists & dietitians! It’s just ludicrous to think anyone should have to go daily, every 3 days or every 5 days to get their pain medications; for very true and real high pain illnesses! I have a wonderful husband, but I don’t think anyone needs to take “a significant other or family member with them before starting Opioids”! Do persons taking heart meds, anti-Seizure meds or high blood pressure meds, have to take someone with them before starting those medications? NO, they/we don’t! Yes, I think everyone knows that we need to lock up opioids in the home!
    5) Kristine Anderson- Thank you! And all the best to you as well!
    6) Connie – Me too! I pray that the right person or aide will read it and actually give it to him! Then I pray that Mr. President talks with me about it. You’re very welcome. I’m very unwell too. Full body CRPS –alone is difficult. I have lived with a TBI s/p MVA in ’02, writing takes me a very long time and lots of re-do’s & many tears!
    7) Cheree- Thank you for your kind response. I hope & pray that the President will read my letter. I also hope to speak to or with him.
    8) Michelle Garcia- I’m so very sorry! I’m sending hugs back to you. I know with a high degree of certainty, that nobody wants these illnesses! None of us asked to be ill. I know I certainly did not ask for that man to run through the red light & hurt me either. I cry a lot too! My Dr of 15 years, left suddenly last year & I was without a Dr that quickly! With nowhere to go and zero meds after 14-15 years; I went through withdrawals after having had a heart attack & a stroke in the year prior! I did it at home and in the loving arms of my husband. I’ve been on the other”other side” for over a year! I did it myself! Then I found a new pain Dr. and he respects me for doing that on my own. Though it was very dangerous & I would not recommend anyone doing that alone!
    9) Sheryl Donnell- Thank you! For your support and kind words my friend!
    10) Kathy a overcast – YES, someone does need to listen and though I’m also a chronic pain patient; I’m listening and I’m trying to DO something to help us
    11) Laeanne Farnsworth- thank you! Thank you for saying that I’m brave! I will email you! I’ll send you my email too! Im sorry that you’re so sad! I think many of us can relate about the shower!
    12) Lisa Lockhart- most “addicts” don’t go to pain management Drs.. They go to the streets and they’re the ones mixing drugs, melting drugs and doing other things to hurt the true chronic pain patients. Lisa, I was in a MVA and it was difficult for me to get help because nobody wanted an “auto insurance ” case! That’s just untrue that “you must be in a MVA or have a traumatic injury to get a pain Dr. Also….The Drs don’t get any lumps of money from people’s auto accidents. Some of your response I don’t seem to understand, regarding your drug addicted daughter & your being a Christian but saying some of the things that you’re saying? Lastly, I’m’ not asking for any “leniency when it comes to getting pain medicine!” My pain is controlled. I didn’t have to write that letter because My pain is taken care of by a caring team of Drs. ! I was very clear about all of us being “chronic pain patients not drug addicts”!! We are “not addicted but our bodies may be dependent”! There’s a huge difference between “addiction and dependence”! None of us want to take pain medicine! We’d prefer to not need it!
    13) Connie- I agree with you and my pain is not in my head either. I stated the same things as you’re saying to Wanita1. Part of my pain makes it so I’m unable to exercise or do any physio too! You’re right in that alternative therapies don’t work for everyone!
    14) Michael Langley, M.D- thank you! For your kind comment re: my letter to the President. That’s exactly what I was talking about regarding forced and dangerous surgeries to fill the pockets of many Drs. Because that’s where the money is now days!
    15) Deb Gordon- I’m praying that this President will help or take an interest and get someone to help us! Thank you for your kind words.
    16) Renee Mace- My letter is just that, a letter from my heart and soul, to the President of the United States. I’m so sad and sorry for all of our pain. But if someone wishes to make a petition, I wish them all the best. I will support it.
    17) Sandy Miller – I’m very sorry for your brain injury and I can relate! I can also relate to your high pain illness or illnesses. I was injured in an auto accident. A man ran through a red light. Aside from 8 surgeries & multiple injuries, a heart attack and a stroke; I suffered and still live with the effects of a TBI or “Traumatic Brain Injury”. I was in Brain Injury Rehabilitation for 3 years s/p the MVA. I have a pacemaker & live with full body/Systemic CRPS, a Nerve autoimmune illness. It’s #43 out of 50, on the McGill pain Scale; only superseded by terminal Cancer and the closest pain to CRPS, is amputations a finger without anesthesia. I live with Scoliosis, Degenerative Disc Disease & multiple herniated/bulging discs at C5/6/7 & L4/5 –S/1 with Radiculopathy. My hands are full of bleeding sores /lesions from CRPS and RA & OA make writing and doing a lot of things difficult. I don’t compare my pain to anyone else’s and I don’t like that done to me. Mostly because we all have our worst pain and everyone’s is different. If someone’s worst pain is a migraine (I have Chiari Migraines that make me throw up)-then that is their worst and terrible for them. If CRPS is their worst then that is their worst pain and horrible for them! If a broken arm is someone’s worst pain; then that is their worst and they feel their worst is the worst for them! Sadly, many people “in the real world” do live with daily chronic pain from one thing or another. There are days when I stay in my Pajamas and I can’t get out of my recliner, but I do what I can do whenever I’m able. Then I still usually “pay for it” later on, with higher pain. I have a very hard time reading & remembering what I’ve read. But I use “Siri”, a calender, notebooks, paper, auto text and “speak & text to get done whatever I’m able to get done. Then I rest! Most of what I do, I do from my recliner or my bed! But I still do it! Though there are those days and even weeks when I just can’t!
    18) Wanita1- again I want to say that I have a team of Drs and my pain is controlled for the most part, some or most of the time. I’m at a 6-7 usually when I’m trying to be a part of the world. When it gets higher, I cannot! We do have the ADA or “Americans with disabilities Act”, but I’ve not been able to find out too much about this Montreal declaration? I’ll keep looking with my husbands help. But most persons here in the USA don’t have the money for Drs or their own pain Medications; let alone an attorney to try and “fight the system”. You can get research, data and information at your fingertips from PDF’s that pain Specialists have written. Also from the internet! But here in the Usa, they’ve been “lumping us (chronic pain patients)” together with “drug addicts”! They lump the deaths from overdoses of illegal street drugs, together with prescribed Opioids for pain control. It is torture and I’m doing my very best to do something about this situation. I’m a chronic pain patient and I’ve listed many of my pain issues. But I have founded an INTERNATIONAL CRPS support group, a Michigan/Midwest & Friends Chronic pain support group and 2 other support groups for chronic pain illnesses. I’m writing for this News magazine, Im a Mentor for newly dx Rsd/CRPS patients, I’m a “Chemo-angel” , An Ambassador for the U.S. Pain Foundation & lastly, a patient leader for WEGO health. I’m trying my very best, and then some!
    19) William Dorn- Great idea! I’m going to send my letter to them too!! Thank you!
    20) Jo Dawn- Thank you! So much! I’m not sure how to take this deep and personal letter, and turn it into a petition? Maybe those who are asking for the petition, could do that part and I will send the letters?
    21) Terry- I also feel as you do in many ways! I hope you hear back from your letter. I pray also that I hear back from mine! I know Somone is listening because I did receive a “special tribute” from our Michigan Governor, Rick Snyder. I’m just gonna have to go there to talk with someone if I don’t hear back from my letter! I too, have a wheelchair, walker or cane (depending on the day and kind of outing), I will find someone to take me or my husband will take me when he’s off from work. I will not give up on any of us!
    22) Jean Price- I don’t need to or didn’t “need to”write this letter in order to get any “drugs”! My pain is controlled and I’m not asking for this for myself. I don’t need this help; or at least not yet! I went through a horrible time a year and half ago when my Dr of 15 yrs just left! I had nobody to help and just that day prior, I did have help! My Dr was then gone overnight! No one would help! I refused a “treatment center” when I’ve never even smoked cigarettes!i was not having any of that follow me in my records! I got sick, very sick! I got off of those meds and now I’m on different ones and much less! It was dangerous because I’d had a CVA & a prior heart attack!
    **you’re absolutely right that we need individual treatment and never a “one size fits all”! That’s what I will say when I get to go and speak with someone in the government one day soon, I pray!
    My letter was as long as it needed to be in order to be “real”! I didn’t want them to get a “form letter”. Or a letter of someone complaining or a partisan letter! I wanted to send a letter from my heart and that made it real! We have had pain patients do rallies in Washington DC and we have had many great people “up to bat” for us. I’m hoping that one heartfelt letter will reach our President’s heart or those around him,& their hearts!
    Right now, we aren’t sure that anyone cares too much about our daily struggles with chronic pain. I’m thinking that they definitely won’t care that it’s affecting our families; if we cannot reach their hearts at how it is affecting us?
    23) DM – well there’s not much to say to someone with your radical egocentric views. You must not know anything at all about the U.S. Pain Foundation because they’ve done GREAT THINGS for all chronic pain patients. They’ve been helping with Bio-Similar medications and the CMS Strategies for Opioid use/misuse! They are a group of chronic pain patients advocating for all pain patients and helping day in and day out! They go to legislators and testify on our behalf! They’ve helped many states to get medical marijuana approved for chronic pain use! You don’t know anything about them so you should not speak of what you don’t know anything about Mr. DM! My letter was a non partisan letter and I’m trying to help people! I’m actually surprised that they printed the nastiness that you spewed from your pen !
    24) Bob Schubring- sir, I feel that if you think the letter should’ve been written better or differently, please feel free to write one of your own sir. No One really “owes” us anything. We can only hope to be listened to and our pleas acted upon! Please feel free to write a better letter! I urge everyone to write!
    25) Judy- thank you! So much for your kind words
    26) Bruce Stewart- thank you! So much! I did put my credentials hoping that it would help! I also won “the US pain Ambassador of the Year award”… but I didn’t add that of course! Lol.. I thought maybe you’d enjoy knowing that! I won’t give up! I’m not stopping with a letter! Also, I had not heard of the “3-day meds” in KY?! That’s terrible! But a friend of mine who lives in PA and another in NJ, have a “5-day medicine” deal. They must go every 5 days to get their pain meds! That’s terrible because as I mentioned, most of us can’t even drive far, if at all! Also I wanted you to know, Bruce; that I rote this letter and put my name on it even though my own pain is pretty much controlled! I have my worse days, of course; but I did this for all of us! Thank you! So much for your kindness.
    Ive tried to respond to everyone! Good luck in all you do! I’ll be praying for you and I will email you Laeanne Farnsworth!!

  24. Renee Mace at 10:55 am

    Dear Suzanne Stewart

    Please send your letter to
    http://www.care2.com/ they have a place where all of us can sign a petition to President Trump following your letter

  25. Michelle Garcia at 9:14 am

    I just want to add a third comment to Suzanne’s letter. On Monday I went to see my pain doctor and all I got was yelled at, threatened to stop my pain meds, and trying to be forced with another antidepressant prescription! 6 weeks ago I had a very extreme reaction to these antidepressant/anxiety meds that not only did it not help my pain, but gave me more pain! I had 3 migraine attacks from these pills…

    I take 60mg of pain meds a day well under the CDC guidelines.

    So I have filed a complaint with my insurance against the pain doctor for his behavior and threats on Monday. I am waiting to hear back from them. Wish me luck. I will fight for the little, but helpful relief I get with pain meds daily. I abruptly left that stressful appointment on Monday in tears and the doctor stormed out slamming the door as I would not take his wanting to give an another new prescription. He threatened to not treat me or refilling my pain meds!

    I fear losing them as it will keep me in bed and not able to move. Thank you, Suzanne, for your awesome letter. I would like to see a petition on this that we could sign. Suzanne your writings are so on point and I pray someone sees it.

    Hugs to all who are suffering daily.♡♡

  26. Bruce Stewart at 8:15 am

    That’s a very well-written letter. I used to work for Health and Human Services, and I’m glad that you put your qualifications for advocacy in it. Government officials look for things like that. It gives it an official air, as well as contact information details, etc., and gives the impression that there is a ground swell of support for our cause. I believe that the only way we will get anyone’s attention is to do it ourselves by speaking about the specifics of what it’s like to exist like this. Your mention of the proposed legislation, where in Kentucky for instance, of requiring new prescriptions EVERY THREE DAYS shows the vast disconnect between politicians and reality, between life and death. That’s what this is – life and death, and they need it drummed into their heads. Remember, the regulations are only SUGGESTIONS, not requirements, and anyone taking under 90 milligrams of morphine per day (60 mg of oxycodone), is NOT subject to the government’s scrutiny. I take 40, but I listen to constant harping about the doctors getting ‘thrown in jail’, more ignorance of the situation.

  27. Judy at 7:55 am

    BRAVO Suzanne, very well written letter!!! Let’s hope the President reads it, or at the very least, someone on his staff reads it & brings it to his attention. Chronic pain patients should NOT be treated like we don’t matter. BRAVO!!!

  28. Patty at 6:41 am

    Would be Good to get a petition going with this letter. I’d sign it!!!!

  29. Bob Schubring at 4:05 pm

    Too few of us learned​ to negotiate from a position of strength.

    The opening line to this letter should be, “Mr President, 100 million American voters will get chronic pain or have suffered it.”

    Telling him what he needs…our votes…puts our needs into perspective.

    Then, step two is to remind him what he already owes us.

    “Your opponent in the recent election, former Senator Clinton, along with Senators Manchin and Schumer, drove away any possible support from us, when they sought to put a tax on the medicines we need to function, work, and pay our taxes. Taking away our medicines makes us sick and forces us to live on welfare. Taxing our medicines out of existence, was such a stupid idea, that the Clinton campaign outspent yours 2-to-1 and lost the election.”

    Now he sees we mean business.

    “Mr President, we need the Clinton-Manchin-Schumer tax on our medicines, never to be enacted, but we need something more, and it has to be done at once. An Obama appointee, Dr Houry, secretly assembled a group, lending it her name and title at the CDC in Atlanta, and they made up some junk science to back a set of guidelines for prescribing our medicines, that Dr Houry now admits are incorrect. The Medicare CMS seeks to turn these junk science based, incorrect guidelines, into rules that deny us the medicines we need to function. They are doing that because they believe you support the bad tax proposal by Clinton, Manchin, and Schumer, and expect you to anger one hundred million voters by forcing us to suffer additional pain and be forced to ask for welfare because we will be too sick, without our medicines, to get out of bed and function.

    Mr President, do you agree with Manchin, Schumer and Clinton, that we should be forced out of work, and onto welfare, so that some lies made up by Obama can be made to seem real?

    If not, please order the CDC Opioid Guidelines scrapped. The CDC has zero experience at pain relief. Most of it’s doctors never treated a patient since medical school. Junk science published by them on this subject, diminishes their credibility when they speak to their actual competence in infectious disease control, which is against the interests of all the taxpayers in creating the CDC. Already many American children go unvaccinated, because their parents distrust the CDC and fear that vaccines are harmful. Allowing Dr Houry to misuse her office at the CDC to promote these Guidelines, is doing real harm to all Americans, not just to we who are pain patients.”

    That’s my first pass at a letter.

    We get nowhere, begging for what we need. We get somewhere, showing Mr Trump that he can earn our approval by doing what’s right or earn our disapproval by doing what’s wrong.

  30. DM at 3:10 pm

    While I agree with almost everything you say here, I can not refer to this man as Mr President and he will not be in office long enough to help the people in the Chronic Pain Community. Plus this Egotistical Narcissistic Lying Racist shows absolutely no support for people hurting or the 14 million who will lose Healthcare next year and the 56 million who will lose it by 2026. HE IS IN IT FOR THE MONEY HE CAN STEAL FROM THE AMERICAN PEOPLE WHILE HE USES THE PRESIDENCY TO PROFIT!!! Those of you who think differently,,, Good Luck, I am sticking with the Resistance and Indivisible Groups.

    The pain community has had the opportunity to organize for several years now and has used their pain as an excuse every time someone has tried to Organize.

    The US Pain Foundation has had its opportunities to step up to the plate and help setup a political backing to help a nation full of sick and hurting patients not be discriminated against, and they have failed Miserably! Using the excuse that their 501 c status won’t allow them to be political.

    The Chronic Pain Community refused the opportunity to create the US House of Representatives we needed to help us and they FAILED by not voting “THE BUMS OUT” when we had the chance. Fact is that IMO the pain community created this VACUUM because those willing to step out of political party preferences vote to get them out and those who chose their Republican party over the change we needed! Poor decisions made this all happen faster by allowing Trump, Sessions and Price to radically take over our country.

    Our only chance at redemption now is to join Indivisible Groups and protest against the Trump Regime.

  31. Jean Price at 1:44 pm

    Our voices are important…I just pray that they will all find the right audience, and be acted upon! That seems to be the biggest issue we face! Letters and even face to face visits over the many years since this started have made little impact! I think many see our letters as us just wanting our “drugs”!! So I believe we must also get the point across that opioid pain medications are only a small…although extremely vital…part of our entire pain treatment plans, and those plans must all be individualized to the specific patient needs and conditions…and NOT a one size fits all type of regimen!!

    We must continue to write and speak up, whenever and however we each can! Our letters must be fairly brief…and yet also specific about how we see this help we are asking for played out! First by getting rid of the CDC guidelines and getting the CDC entirely out of pain care! They don’t belong there in the first place, and they have made a mockery out of pain and sent pain care back into the Dark Ages! And next by getting compassionate and knowledgable doctors and a sizable group of PATIENTS with PAIN to draft something appropriate and non-binding, so each individual is allowed treatment by their doctor…who can then practice medicine in regards to their specific patient needs! (Not some set of rigorous rules which first demean and basically ignore the diagnosis of pain over just policing the use of opioids!!) AND WE ALL must have ample time and the ability to see what they come up with…and lend our input…BEFORE it goes out!!

    Plus we MUST include our veterans who DESERVE better care and ALL of our support! They are being systematically denied pain care…and most don’t often have the luxury of going to other doctors, especially ones outside of the VA system! They are treated unfairly and even ignored a great deal of the time…and yet these are the same people who put their lives on the line for us and this country! Unbelievable!! Shameful, in fact!

    And lastly, we must start really stressing that daily pain, like cancer or ANY major life-limiting and life-threatening illness…IS in fact a WHOLE FAMILY DISEASE, which affects the ENTIRE family and also extends out to impact friends, businesses, communities, and SOCIETY at large. And it must have AMPLE and ADEQUATE research funding of all the various modalities used for treatment…and be considered significant to work on diligently and to address properly! We don’t need or want a bandaide type of response here…we need a dedicated approach to helping make life better for those millions who live with daily pain and who can’t always advocate or care for themselves! First by allowing opioids, and the to get serious about all the researching needed, and coverage for alternative treatments! And we need this NOW! Actually yesterday, but now would work!!

  32. Terry at 1:23 pm

    I as well have pain around the clock due to Fibromyalgia, Rheumatoid Arthritis, and many more pain complexities. I suffer everyday and what little pain meds I take barely knock the edge off. After all the hoopla with the CDC and others saying by stopping or greatly reducing the meds I took for my pain. Now my Dr., has reduced my pain meds to less than half! I’ve had Fibro and a host of painful diseases for 25+ years! Also if it weren’t for my wheelchair I couldn’t move as it hurts so bad to walk!
    I, as well wrote to President Trumps office about weeks ago but so far I have heard nothing. I pray that whomever reads it will show the letter to the “President “.
    I don’t know what else to do! Also I texted my state Senetor and his was a form response as we are trying to save lives but the trouble with that is addicts will get their drugs no matter what laws they change. They don’t want helicopter as they’re chasing their “high “!!!!
    Best wishes to all whom deal with these debilitating diseases!

  33. vicky at 12:38 pm

    brilliant letter and also follow up comments.

    what can WE all do to help pass this word along?

  34. JoDawn at 12:29 pm

    Thank you!

    And I second the motion that this become a petition, or at least changed enough that we can send it to our congress people.
    You are an awesome writer and I want to thank you for all you do!!

  35. William Dorn at 12:12 pm

    Please see if you can get some of the large newspapers like the new york times and the washington post to print your letter.Presedent trump would surely see it.Thank GOD for people like you who keep fighting for all of us.Please everyone write Presedent Trump and your state reps and have your families write.We must win this fight millions of lives depend on it.

  36. Michelle Garcia at 11:45 am

    Awesome idea, Renee! I would sign it in a heartbeat!

  37. Wanita1 at 11:39 am

    Connie,

    If you read what I wrote, you would see that I stated “for eg”.

    Adequate pain control takes a multidisciplinary approach to be successful. Obviously there are some aspects that won’t apply to all cases.

  38. Wanita1 at 11:30 am

    Far too many people are allowing this to go on, including pain patients themselves.

    I am in the process of writing up and filing a complaint with The Canadian Human Rights for discrimination against those with Chronic Pain on behalf of THREE people. That is it. Only 3 Canadians will attach their names to this complaint even though it discriminates against all of us.

    There is strength in numbers yet when I ask for people, everyone slides away. My name is one of the 3 attached yet I am having my pain needs met. My doctor is changing nothing as she feels she has the documentation to support the medication she prescribes, so why am I even fighting when others who don’t have their pain needs met won’t actively fight?

    This Human Rights Complaint is our best chance as we have specific legislation that prohibits the discrimination of those with disabilities. In fact, the USA has legislation as well. It is The 2008 Disabilities Act.

    Both the USA and Canada is part of many countries that signed the United Nations Declaration of Montreal regarding the use of Opioids to treat pain. This means that The UN, Canada, The United States and others have declared that treatment for Chronic Pain is a fundamental Human Right and that to deny such treatment is a violation of those rights. If The 2008 Disabilities Act won’t be good enough to ensure Chronic Pain is treated in the US maybe the declaration will be.

    We are fortunate in that some Members of Parliament here are listening and communicating concerns to those who may be able to put a stop to the discrimination but until we know for sure we will go forward with our complaint. I will proceed in the fight on the Canadian side but those in the USA need to get a lawyer and fight by doing more than limiting it to lobbying Government as it is clear the Government is not understanding.

    For those in the US who read this, I implore you to use the courts if you have to. For those of you in Canada, I urge you to join the complaint here so that the Human Rights Commission will see fit to take the fight to the Courts if they have to.

    For all people, I need research. I need help finding information. I need any data that can help. Suicide stats involving those with Chronic Pain, loss of job, etc. I need links to information that is fairly brief and to the point. If we can succeed here in Canada then it may help those in the USA.

    Failing to treat chronic pain is akin to torture. Attached below is the Declaration of Montreal.

    http://www.canadianpaincoalition.ca/media/declaration_of_montreal.pdf

    other info

    https://www.ncbi.nlm.nih.gov/books/NBK138344/https://www.ncbi.nlm.nih.gov/books/NBK138344/

    https://treaties.un.org/Pages/ViewDetails.aspx?src=TREATY&mtdsg_no=VI-18&chapter=6&clang=_en

    http://www.paineurope.com/articles/slow-adoption-of-the-biopsychosocial-approach-to-chronic-pain-threatens-patient-quality-of-life

  39. Sandy Miller at 11:19 am

    This is a letter I wish I could have written, but due to a right thalamic hemorrhage in 2001, I have been left with a condition called “Thalamic Pain Syndrome” or sometimes called “Central Plain.” I am in pain 24/7 due to this hemorrhage striking my thalamus, that works the entire motor cortex, or all day this message center is in use. I don’t know how to explain it, I just know that it took me years to find a combination of medications to give me a little relief from pain. Ive had heart surgery and surgery for what they called a deformed back, from the T3 to the L5-S1 and below because of Scoliosis. Along with the thalamic pain, the pain from my back problems, it’s not much of a life anymore. My entire life has changed, I’m older than a lot of these precioius chronic pain patients here, but we all know you don’t take away a diabetics medicine, well this is exactly what has been done to us. Suzanne was correct in which she stated how the doctors are leaving so fast because they do not want to lose their licenses and dropping patients who have been taking these medications for years, and all they are doing is taking care of their patients. We are not the ones out buying drugs, or overdosing. This is our medication and we need it to be able to live, just to get up in the morning, and what most people consider “normal,” Is difficult for us to remember what that is. I hope your letter will help us and I can’t tell you how much I appreciate someone being able to find the right words and put them into a letter that I have thought about so long, but unable to do so because of my stroke condition and pain. I don’t know how some of you people are able to do this. I worked for over 30 years as a legal secretary, and can not even put a letter together now after my hemorrhage. My hands shake so bad, I cannot send cards to anyone anymore. I am lucky to be alive, however, being in pain since all this change in our medications, I’m beginning to wonder. I pray that this letter will be received and read from someone who understands the plight we are all in …. not being able to exist in this world the way we once at least had the medications to help us. There are really people like us who take these medications because we have to and not because we want to, we are not selling them or overdosing on them. We are just people who never get our prescriptions too early, in fact, most of us try and do get them to last longer if possible, that’s suffering! Somedays are total hell and I hope none of you out in the real world ever have to live the way we are now. We absolutely need the help of President Trump and Dr. Price.

  40. Renee Mace at 10:58 am

    Dear Suzanne Stewart:

    I two suffer the agony of chronic pain and under treatment of my Life Saving Pain Medications leaving me in bed 24/7. Two months ago, I could at least do the dishes, walk my dog a short distance and enjoy my grand children, today it is all but a memory.
    What I wanted to ask if you can make your letter into a petition for all of us to sign? thanks for all your work.

  41. Deb gordon at 10:56 am

    Wonderful letter Suzanne. I pray the right people read it and stand up! We need help, but I don’t feel it will come from this Prsident or his staff. Thank you sooo much for a well written letter with facts above all heart. Thankyou💗. Deb

  42. Michael G Langley, MD at 10:38 am

    That is a well written letter. I only hope that it is not falling on deaf ears. Most physicians don’t care to support chronic pain patients, as can be witnessed by the loss of so many good physicians, at the hands of the many state medical boards in our country. Those medical boards are populated by those very physicians who refuse to keep up with the modern science of pain management. I don’t expect that Dr Price would think any better of me, than those who I faced prior to my loss of license. Being a chronic pain patient just pushes the dagger a little deeper. I have suffered at the hands of a “pain doctor” that would lie to make a it possible for me to have a dangerous, and unneeded, surgical procedure. Maybe it had something to do with the big paycheck he would get for that procedure. I found out what honesty got me in medicine! Trying to give my patients the best got me the question of “Should you be practicing cutting edge medicine out there in our state?” I guess we should not expect the best from our doctors, who choose a small town setting to care for their patients!? Maybe that is why we keep seeing more foreign born doctors occupying the medical offices, in those small towns!

  43. connie at 10:08 am

    Wanita1 I disagree with you. Pain is not in my head so I don’t need or want a psych or the anti depressants that they push. Physio without the proper amount and type of pain meds isn’t going to happen! Part of what is happening to my body severely limits what I am able to get down and keep down so someone telling me what to eat is a waste of money and time. In other words what works for one pp doesn’t work for all in either meds or alternative treatments!

  44. Lisa lockhart at 10:07 am

    My name is Lisa and I also live with chronic pain on a daily basis it’s hard to even get out of bed to do everyday living skills. I can’t believe how easy it is for half the addicts then go pain management every month and get medicine that I get denied for. Unless you’ve been in a motor vehicle accident or traumatic injury is pain doctors will not take you because there is not a sum of money from a lawsuit so I am unable to get any pain relief. I’ve been through 10 different HMO doctors you tell me oh well just take Ibuprofen and the most they’ve even offered me is Tramadol which is a class 4 drug which supersedes ibuprofen for pills. I end up having to kill my stomach by taking 3 Tramadol and 3 Excedrin at the same time just to move my body I suffer from fibromyalgia thalassemia minor and blood transfusions which you take your joints. I have tried all kinds of holistic medicines tumeric xcetera. The drug addicts know how to pass the drug screening test the doctor so they do this and know when they’re going to get tested and never get caught and sell their medicine on the street for hundreds of dollars. All I ever asked for was something to help me get my life back. And not to go up subject these drug dealers or up in low-income disabled housing that I need to get into because I’m on Social Security and cannot get into them for anything. I am a Christian but I this point I am so aggravated that no one will hear when I’m saying they just ignore because of addiction. My daughter is an addict but her mother is not I do not abuse any medicine of the doctor gives me and she knows Every Which Way But up to get it and she even said Mom I’ll get it for you off the street. You know what I may be in pain but I am not going to legally on the street to get pain medicine that I so richly deserve with all the symptoms that I have any diseases I deal with what a shame. I Leave You with saying God bless you I hope you get somewhere with this pain letter to the president and that he gives us some kind of leniency when it comes to getting pain medicine. No one here is trying to be an addict we are just trying to get up and clean our houses and continue living on the life we should live thanks for listening God bless Lisa

  45. Laeannne Farnsworth at 9:57 am

    Awesome letter, Ty for speaking for those of us that suffer daily. I couldn’t help but get a chuckle when I read the part about showering and brushing your teeth. I’ve been sitting here for about a hour praying my pain will let up enough that I can get a good shower today and I’m getting ready to force myself to go lean over the sink to brush my teeth. After brushing my teeth I will have to lay on my heating pad for about a hour before even thinking of doing anything else. I need to stop now, I’m about to cry. This is a sad existence.
    Ty again for representing us so bravely. Laeannef@gmail.com

  46. Michelle Garcia at 7:39 am

    Suzanne,
    Awesome letter! Well it happened to me yesterday at the pain doctors! He is taking away my pain meds and trying to force me into meds that cause me serious migraines. I will soon be bed ridden from pain. I am so upset and have been crying since yesterday. I am to the point that. I do not wish to live any longer. The doctor will not listen to me and yells at me at my visits! I have been disabled since 2008 from a worker’s comp claim. I have had 7 surgeries which 2 of them were done wrong and permanently disabled me. Now I must suffer do to no fault of my own. Now the little life I did have will be gone soon without my pain meds!! My marriage is going down the drain after 24 years. When I am in severe pain I get angry and want to be alone. I have no family or friends. Thank you, Suzanne for fighting for all of us! Hugs to you.🕊

  47. Cheree at 7:27 am

    THANK YOU, Suzanne Stewart, for such a poignant letter. Thank you for speaking out for all of us that live with chronic pain everyday! We can only hope that SOMEONE listens, soon.

  48. connie at 7:26 am

    Very well Suzanne! I hope he actually reads your letter. Of I could get my thoughts in order like you have o would write to him too. If I wrote it would do more harm than good
    . I am afraid of many of us feel like that. Thank you for all you do!

  49. Kristine Anderson at 7:09 am

    An excellent letter and one that we all need to express to this government! Thank you for writing this on behalf of all of us, and all the best to you in our uncertain future.

  50. Wanita1 at 6:26 am

    I do think that letters sent to the President might help but that they need to be fairly brief to get attention and should include suggestions that will help to alleviate concerns of pain patients and the public. eg:

    -meeting with the patient and significant other (with consent) or family when choosing to begin long term opioid therapy.

    -physio assessment to prescribe exercises to be done at home in order to strengthen musculoskeletal system to support structures to help reduce inflammation and resulting pain.

    – dietitian consult to encourage healthy eating to strengthen body to reduce pain.

    -assessment by a psychologist to determine other factors that might contribute to pain and to teach meditation and other relaxation techniques.

    -consult with pharmacist who should brief patient on the bio-chemical process involved in treating pain and preventing addiction and abuse. This would help the patient understand that addiction is not a “mind over matter issue” and that using the medication inappropriately will cause one to crave the drug.

    -when treating a person with history of addiction, Chronic Pain can be alleviated while ensuring patient safety by beginning therapy with prescriptions issued daily and then every second day etc.

    Opiate prescriptions in the home should be in a locked cabinet

  51. Cynthia at 6:19 am

    Thank you Suzanne for all your efforts in trying to help us. I totally understand how you feel!! My doctors have already changed their protocol to just doing procedures that will not benefit my illness. My days are long n so painful. I hurt so bad I’m just writhing away. I dread going to sleep because I know how bad it going to be to wake up to another day. Thank you for your support!!

  52. Fay at 5:54 am

    Trump won’t do anything. He wants the middle class and the sick to die off. It’s as simple as that. My wish is that he suffers pain as we do. But then he gets whatever he wants because he’s the president. Football players get whatever they want and have for decades. Are they called drug addicts? No. Long live football for the men. Nothing will stop that. They get whatever they need.

  53. Alessio Ventura at 4:12 am

    I echo these words 1,000%!

    Each month I go on lengthy “treks” just to find opioid-based pain meds formy chronic, intractable pain. Usually I visit 10s of pharmacies before I am able to find the meds. Pharmacists tell me that the FDA/DEA set limits on the amount of opioid they can sell, therefore, no single pharmacy may consistently have certain pain meds in stock. However, I have written to the FDA & DEA and they say that they DO NOT IMPOSE LIMITS. Some people tell me that pharmacists simply tell people they do not have it because they don’t want to establish a “pattern” of drug distribution to any given person or persons.

    I don’t think the latter is true and I don’t believe tbe FDA and DEA. Something is definitely going on to severely restrict access to medicine.

    I often believe that a lobby, like the marijuana lobby, is behind the effort to eliminate or severely restrict opioids. I have no proof, but why the hysteria over opioids when NSAIDs + Lyrica + Anti-Depressants, all used to treat pain, kill far more than opioids! NSAIDs alone kill 15,000/yr and Anti-Depressants and Lyrica kill at least 40,000/yr.

    http://articles.mercola.com/sites/articles/archive/2011/05/03/tips-to-avoiding-depression.aspx

    http://www.mercola.com/infographics/nsaids.htm

    http://www.ehealthme.com/ds/lyrica/sudden%20death/

    Intractable chronic pain and severe acute pain are crippling illnesses. There are pain specialists across the country who know how to treat it. For some patients, that includes opioid-based pain medication.

    It should not be HELL ON EARTH to find pain medicine for people in tbe throws of crippling pain. After all, we are already experiencing HELL ON EARTH and we have every right to be treated by our doctors to control that pain. We have tried all modalities, nothing else has worked, and WE ARE NOT ADDICTS. We are PATIENTS WITH SEVERE PAIN!

    To all in local, state, and federal governments: LEAVE THE TREATMENT OF PAIN TO TNE DOCTOR-PATIENT RELATIONSHIP. Stop, please, with the “Nanny State” role. We understand there are addicts and that people are dying from overdoses, but please don’t conflate addict deaths and drug abuse witb legitimate use for validly diagnosed pain. Addicts need help and those who distribute opioids illegally must be punished by the law, but board-certified doctors and pharmacists in good standing must be free to treat their patients without artificial limits, where the limits become do restrictive as to abuse the patient with legitimate chronic and/or acute intractable pain.

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