Fight For Our Lives


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Hello Luvs,

Here is a video that has taken me awhile to get out. I asked for submissions from every chronic pain patient on LinkedIn, 3 Instagram accounts, 3 Twitter aaccounts, 5 Facebook pages and 5 or 6 Facebook groups. I requested video submissions many times during November 0f 2018. I received a total of 8 videos. I waited to produce and edit this video until this week.  It is the First week of February 2019 and the video was posted today 2-7-19. I added the closed captions for other Deaf/Hard of Hearing persons like myself.

Please watch this  video on YOUTube and make comments. Share this video on Twitter to our POTUS and to the FLOTUS. Please share it to Fox News, Greg Guttfield and any other news, media or government agencies where you think someone may be able to help us. Please share, share and share. We need someone to see us, hear our stories and believe in helping 100 million chronic pain patients.  There are about 26 million who depended on Opioid prescription pain medications and now they are mostly unable to obtain any relief whatsoever. Thank you for watching and for sharing this video far and wide.

This video is not affiliated with any group or organization. This was totally my idea and I requested, received, produced and edited this video on my own. These ladies are brave and I’m so thankful and grateful for their pleas and their stories. Thank you again! Have a wonderful day!  If you just click on the link below (it is a safe link, I promise), it will take you directlly to the YOUTube video that I uploaded. If you prefer to visit it yourself without clicking on the link, here is the URL:

or click the link below

(**IF YOU NEED CC FOR DEAF/HOH, PLEASE USE THE BLUE LINK AND GO TO THE YOUTUBE VIDEO WHERE I’VE PUT THE CC JUST FOR THOSE OF US WITH HEARING LOSS):

Fight for our LIves -Full Video Here

Opioids Kill Pain, Not People


Hello Luvs,

This writing turned into an article for the Health News Magazine that I author for, and have since November 2016! I love it and am enjoying this so much! I wanted to make sure to send you the link to the edited version of my blog post, which is the article of the same name. It is here: http://NationalPainReport.com/Opioids-kill-pain-not-people-8833207.html ….

I wanted to write something to enlighten the non-pain community as well as those who are in pain but are either new to the pain or have not had much of a relationship or experience with Opioids. Opioids can cause “dependence” just the same as many anti-depressants, blood pressure meds and Beta blockers.  Dependence is not the same as addiction and I will try to explain that in this writing. People who take opioids for chronic pain illnesses that carry a # of 43 on the McGill pain scale, for example:  CRPS or Complex Regional pain syndrome (and many others); do not get a “HIGH” from taking them.  When you have very extreme chronic daily pain, the Opioids just relieve the pain and do not give a Euphoric feeling whatsoever.  Of course, I am writing from my own experience and from the experience of being a patient health advocate since 2007 and a patient leader, as well as an administrator for several chronic pain illness groups.

Opioids do not kill people, but they do kill the pain for awhile. If you ask a person with chronic pain, if they enjoy taking these medications; they will all tell you “NO”! We do not like that we need or depend on these meds for relieving our daily high pain. We wish that we did not need the Opioids and we would prefer to just live pain free.  Many people that do not experience daily chronic pain, have the notion that Opioids are killing people.  This may be partially true, but not so, for the true chronic pain patients and the pain community. Those who die from taking Opioids are usually mixing it with other things from the “streets”.  They mix it with Heroin or crack cocaine or other “street” drugs; sometimes alcohol too.  Others, for example, celebrities who have passed away from taking Opioids, have mixed it with other substances. The news shows us that “another celebrity has died from an Opioid overdose”.  That’s not the whole truth, because that person had other substances in their bodies, we would later find out; after getting the coroner’s report.

In my research, I found an article on the website for RSDHOPE.org and it says this: In an article written by WebMD in collaboration with the Cleveland Clinic states, “Some medications used to treat pain can be addictive.Addiction is different from physical dependence or tolerance, however. In cases of physical dependence, withdrawal symptoms occur when a substance suddenly is stopped. Tolerance occurs when the initial dose of a substance loses its effectiveness over time. Addiction and physical dependence often occur together.” People who take a class of drugs called opioids for a long period of time may develop tolerance and even physical dependence. This does not mean, however, that a person is addicted. In general, the chance of addiction is very small when narcotics are used under proper medical supervision.” The article goes on to say, “Most people who take their pain medicine as directed by their doctor do not become addicted, even if they take the medicine for a long time.” You can read the original article in its’ entirety. (this was found on the RSDHOPE.org Website here: @http://www.rsdhope.org/addiction-dependence-or-tolerance-to-opiods.html). In that same article at RSDHOPE.org, they go on to explain that: “Another article, written by Leanna Skarnulis, states, “Chronic pain patients often confuse tolerance with addiction. They become fearful when the dosage of a narcotic has to be increased, but it’s normal for the body to build up tolerance over time, says Simmonds, spokeswoman for the American Cancer Society. “Patients don’t get a high, and they don’t get addicted.

I was researching for this article and I read about Elvis Presley, Prince, Michael Jackson and others who died from what was called  or labeled “Opioid overdose”.  But if you read more and dig deeper, you will find that the larger percentage of these people and others, die because they have mixed a prescription Opioid with other medications, drugs, street drugs and/or alcohol. I’m not saying that nobody died from taking Opioids in an overdose.  I will defend my cause by stating that the every single person that I’ve come across within my own pain community (*which is a large number of people because of my being a patient health advocate, Ambassador for US Pain Foundation, mentor for newly diagnosed CRPS patients and a patient leader for WEGO Health and founder/admin. for 4 different kinds of chronic pain support groups) has told me that they do not take more than what is prescribed, therefore they are not “addicted”.  I will also state from my own experience, that people living with daily high pain illnesses, do not “crave” their pain medication. I have never craved my medicines, nor do I seek them out or think about them every day or continuously.

The chronic pain community has been talking about the Opioids more lately and we have been afraid and worried.  This is happening because there are “people” with power who are trying to take away our small semblance of a “normal” life with lowered amounts of pain. I understand that there are parents who’ve lost children and Children who’ve lost parents due to drug overdoses. I realize that people who are uninformed or misinformed regarding chronic pain; think they are taking on a cause or “helping”others because of their loss. I feel deeply sad for anyone who’s lost someone that they love from a drug overdose or for any reason, for that matter.  It’s a bit similar to what used to happen when we were children in a classroom at school.  The teachers would punish the entire class for something that one child did and he would not confess to doing it.  The entire pain community should not be punished because of the actions of some.

There are some other reasons for The Opioid Debacle that’s happening right now around us.  There are those “persons” who make money off of our chronic pain and suffering.  People who make a fortune doing invasive and dangerous surgeries on the pain community.  Also the many different therapies and treatment modalities that insurance doesn’t cover, for the most part. There are PROP physicians and others who say that Opioids don’t help chronic pain! The latter is an untrue statement because I’m here today as a chronic pain patient who does NOT and has not gone up in dosage in many years. I have experience being with many persons in the chronic pain community who will testify that taking a routine and regular dosage of Opioids, does help relieve their chronic pain.  We are not addicted, we do not seek out or crave the Opioids and we deserve to be able to just “take a pill” that has little or no side effects, for many.

Lastly, I would like to say that there are advocates in physicians and others who truly want to help those with chronic pain.  One of our biggest advocates, is a physician named, Dr. Lynn Webster (www.LynnWbsterMD.com). He is someone who has been trying to help our community. Dr. L. Webster, M.D., has a book out called “The Painful Truth” (www.thepainfultruthbook.com) and now there is a movie  with the same name on PBS also. For anyone who is interested in learning more about chronic pain and how medications like Opioids can help; here is the link to the PBS broadcasting :  The Painful Truth .

**HEY, Please follow me on TWITTTER at these two Handles: @RASEforCRPS and @ Ppl_InPainUnite …(RASE stands for “Research,Awareness,Support and Educate)

Living Through Betrayal And Withdrawals


I’d gone to a pain Dr for 3-4 yrs s/p a MVA . I had multiple injuries/surgeries. They forced me to take opioids! I was afraid of them. Not for any reason; because I have no history of smoking or drinking or taking any kind of meds! I have a letter that the pain psychologist wrote, stating that I “don’t have an addictive personality.”…..so then I did all of the injections etc. & all of the PT-OT, Biofeedback etc. They wanted to give me an Intrathecal pain pump. Then we found that I am not a candidate due to Combined Immune deficiency disease. Soooo then the pain Dr “dumped” me off back to my GP for pain meds only! He said the the “Govt. looks at him through a microscope” so he wanted my GP to do the meds. So that was 2005 and in 2014-Dec., my GP had Feds at his office & he was removed from that office & sent to an urgent care! I was stuck because nobody wanted to prescribe the fentanyl losenges and patches for me (with Dilauded for emergency). I went back to my old pain Dr and he refused to see me! He said that “he didn’t want any part of that other Dr.’s (the GP) mess”! He wanted to send me to his “pain Dr. friend!” I researched the guy to find out that he was or is actually an addiction specialist. There was no way I was going there! I’ve never even smoked cigarettes! There’s no way I was allowing “that” to follow me around in my medical records. So I did it on my own! The partner GP offered to help me for a few months but asap I was told to find another pain Dr.. But I wasn’t just told that, I was badgered over & over again to go to that specialist. I lowered my doseages myself. When I finally found a kind pain Dr. who was respectful towards me; he told me that even though I’ve had a CVA and an MI, I was to “stop the Fentanyl losenges cold turkey!” I had gotten myself down to half of the amount of the patch. I stopped the losenges on my own, on the day that the new pain Dr. told me to. He told me that I never should’ve been on them in the first place. They’re for terminal cancer patients and even he’s not fond of them! He was visibly upset that I’d been on them for about 10 years! So I got down to half of the patch amount and to zero losenges! I was very very ill! The new pain Dr. told me that my body would be “fooled” because he gave me a smaller amount of opioids & I was still on half of the amount of the patch! Well, I’m here to tell you that my body was not fooled! Nothing was fooled and I was sweating, nauseated, had diarrhea and got very high fevers and blood pressures! I started researching withdrawals myself. Nobody was helping me, except my poor husband, who was feeling helpless. Nobody felt as alone and helpless as me during those dark days! I was so happy to have my loving husband to take me by the hands & walk with me through it all. It was a horrible 1st week; like the flu, but worse because the pain was so much higher. After about 6 weeks, things got better. But I must tell you that I never once craved the medication! I was happy to be rid of those losenges, actually. I’m very proud of myself for what I did all on my own, for the most part. I now have a wonderful pain Dr. Who cared enough about me to let me go and not treat me if I couldn’t do what needed to be done. I did it and I’ve done it and now I’m on about half as much medicine as I was on during those 10 years. I also feel like my pain Dr and I mutually respect each other. I did something by myself, that many or most people couldn’t do even with help!

I still take pain medications. I wanted to take them only once in awhile,, when in Agony; but my Legitimate chronic pain Physician told me that I have too many high pain chronic illnesses; that would be detrimental to my health. I live with pho of a stroke (CVA) and a heart attack. I live with lasting effects and pain from a TBI (3 yrs of brain injury rehab); along with full body/Systemic CRPS, Polyneuropathy In Collagen Vascular Disease (aka Ehlers Danlos Syndrome Type 4-Vascular), Rheumatoid Disease, Chiari with Chiari Migraines, Degenerative Disc Disease with multiple herniated & bulging discs, right Long thoracic Nerve Neuropathy, Lymphedema,Dysautonomia/POTS, Gastroparesis, S.I.B.O. (Chronic small intestine infection)…..

So I took my team of Drs advice and I take my medication as prescribed. They say that I have too many high chronic pain illnesses and that if I do not take it as I’m advised, I will be in intolerable pain. If one is “lucky” enough to only need pain medication once in awhile or for special occasions, that is great for you! I’m very happy for you. But as for me, I want to be the best wife, mother of 2, grandmother of 3, patient health advocate, US Pain Ambassador, Mentor, writer, Blogger and published author for the National Pain Report; that I can be! I don’t fear losing pain medications, I fear losing my life due to under-treated or un-treated pain.

So just remember that there are always people better off and worse off than you! Do not judge someone for the way they choose to live or the way they just get by day to day. There are reasons that may be unknown to you for why they need the various medications and dosages. It may be different for you; but please don’t judge because it might be different from your regimen. Different types of pain relief, from complimentary therapies, to Medical Marijuana to pain relieving medications; any of these may be exactly what various chronic pain patients need. They may need any of the above, or a combination of these to relieve varying degrees of torturous daily chronic pain.This is not a competition and there are no winners!

From The Heart, About The War Against True Chronic Pain Sufferers!!


a collage of support for CRPS 

Hello Luvs,

Think back to the Gun laws.  Remember how some citizens were against taking guns away from the “people”? The reason being, that the “bad guys” will always have access to them and the “good guys” who are in need of protection; get killed in the meantime because their safety net, their weapons to fight against being robbed were taken away from them! Well, my friends, the same thing is happening now, this 2016;  to “real pain patients” fighting against being “robbed” of their “safety net, their weaponsto fight against the chronic intractable pain, and nerve pain that “WE” live with day in and day out. Yes, I am one of those people suffering and trying to be a “pain warrior”.  While I am fighting yet another battle to live maybe not “pain free”; but possibly with less pain and more living!

There are several of us, my fellow pain/health advocates and myself; who have been and are writing to anyone and everyone who will take the time to listen to our plea. All 50 states now have Proclamations and/or House Resolutions (in the state of Michigan, my HR is #267 from 2013) that explain CRPS and give us an “Awareness day/month” etc. They explain to the skeptical family members and the Physicians who have no idea what CRPS is all about.  They give us substance to show to our families, Physicians, lawyers and WC case claims people.  These Proclamations and my House Resolution #267 in Michigan, explain all about the horrible, burning, “on fire-like” pain of CRPS. They talk of the allodynia, or the extra over sensitivity to touch and the pain that the softest touch can bring about. But all of this means nothing if they, meaning whoever “they” are; including but not limited to: the government, the CDC, FDA, Physicians, Pharmacies (especially big chain ones) and/or all of the above, take away our means of lessening our REAL debilitating, horrific, burning, “fire-like” pain!  We follow the rules, sign contracts with our pain Dr’s and urinate in a cup at the request of a Physician; all because we have to jump through hoops to now get what we need to try and live some semblance of a life. Most of us don’t even remember what that is anymore, actually!  While on the other side of the spectrum, as usual, the people who don’t follow the rules, those who break laws and essentially don’t give a damned about anyone except themselves and getting their “fix” because they have a different disease called “addiction” and “they” ruin it for all of us.

Would these same agencies and officials take glasses away from people who’s eyesight is not good? Would they take a white cane from the blind woman who needs that cane to make sure she is seen so that she won’t get hit by a car? Would they take anti-depressants from the hopeless, or Insulin from a Diabetic? Is this what is going to start happening? Are they going to also make the Deaf or the Blind feel “guilty” for using other methods of reading or “speaking”, by limiting braille or American Sign Language? Are we going back to the days of “tying the hands of the Deaf behind their backs” so they would be forced to learn to speak a language that they are unable to hear? Well, I am Hearing Impaired now, due to a Motor Vehicle accident in 2002. I suffered an MTBI or Mild Traumatic Brain injury. I have nerve hearing loss in both ears “Moderate”. I have 2 hearing aids and is someone going to take those too? (Actually, they can have the hearing aids, I hate them and I hate the background noise! So if that would help the situation, they can take those away from me!)…Deaf people were once made to feel “bad or guilty” for using their own Naturally formed language called “ASL”. It is part of Deaf culture, yet they were punished for utilizing something that was very much needed for them to live any kind of life worth living.

The same is true today for those of us in Chronic pain, with nerve pain, Polyneuropathy and/or CRPS, “Complex Regional Pain Syndrome” and other painful illnesses. “They” are trying to make us feel like “criminals” and lower an already lowered self esteem in some of us. Many of us have been through the rigors of the Auto case claims adjusters, who have the power to take everything away with the swipe of a pen!  Others have been through the hell of a W.C. case and Oh how they make these people feel like they really “wanted” to get this pain and be injured on the job and never be able to work again! It’s ruthless and tough out there today for people living with chronic pain illnesses, like me.  I’m an advocate, a blogger and I have a couple of support groups that I am an administrator for. I try with all of my might to spread awareness, fund-raise, write to the people who can do something to help and talk to those who would help if they could.

But this year in 2016, it is going to continue to get worse unless we rally around and try to do something about this travesty! This year the new prescribing guidelines are getting more horrible. The Physicians who were once very good and capable at what they did and cared about people living with real and horrible chronic pain day in and day out; these same Dr’s are cowering and refusing to give medicine for pain where it is truly needed. Yet….once again..as I’ve said above; those who want it, and who are true “addicts” will be able to find a way to get what they need! While  law abiding citizens, suffering daily, have no other means than trying to advocate for ourselves  and continue to try and do what we can do…. in a calm, legal and respectful manner.  We are not “addicts”! We are people who are suffering with a horrific daily pain and who are “dependent” upon a pill, a patch, a spray or a losenges; to get through our daily routines.  Some of those “routines” involve mostly sitting in a “Lazy Boy chair” for many hours per day, trying to be as free from pain as possible because moving too much means more pain later! It is so sad when taking a shower is so painful, that it is very draining and the rest of the day is pretty much left to doing not much of anything else after taking care of basic needs.

We need someone to listen to us! Whether it is Pain News Network, National Pain Report, the CDC, FDA, a state Representative or a Federal representative. We need someone to help us; someone who care and who is understanding and knowledgeable in such matters. It is despicable that some pain Dr’s now are being forced to “push” spinal cord stimulator surgery or intrathecal pain pump surgeries on many more people than they would have in the past.  Surgery has much higher risks of something bad or negative happening, than taking a pill; for crying out loud!! Really?? Are they, the Physicians who have committed to “Do No Harm”, going to be “pushing surgeries” now, so they won’t be scrutinized for passing out the medicine so desperately needed by the chronic pain; the REAL chronic pain population of America? Like I mentioned above, are these same Dr’s going to take away the much needed medications from their chronic pain sufferers?  People with illnesses such as RSD/CRPS  and other such horribly painful diseases? Will they then be taking the prosthetic leg from an amputee? If they did that, then that person without a leg of flesh and bones; would fall to the ground and not be able to stand up.  Just like if they take away our medicine, we will be falling one by one and we’ll be unable to get up.

There are new controversial prescribing guidelines coming and some already in effect. These are leading to more and more restrictions put upon our GP’s and even tying the hands of our pain management Dr’s. The CDC, FDA, and other special groups truly think that they know more about pain and pain management, when they have never studied such things? They are making it all about some big and fake “war on prescription drugs”! This is some kind of smokescreen for either saving money or wanting to rid society of the less productive members!  They aren’t even letting someone go home from the emergency room anymore with a few pills to get them through until they can be seen by a pain specialist. They refuse to give Opioids to anyone anymore at an emergency room setting.  Too many people went there for the wrong reasons and they somehow “faked out” the Physicians and nurses and now we, the true pain patients of these times; are suffering because of the “bad guys” who faked out the ER Docs, or the addicts who went to several Dr’s and Pharmacies and ruined everything for all of us! My poor relative tore his sternum and had to go to the ER, thinking he was having a heart attack. That kind of pain is acute, granted; but it is very very painful! Yet he came home with only something to “knock him out”; a sedative, tranquilizer. But he was not given anything to help his horrible acute pain at home. He was sent home after it was found that it was not his heart, yet a torn sternum muscle feels very painful, I’ve heard! Luckily within a few weeks, his pain will be all gone. Unlike my pain which will be with me for my lifetime. But just a year ago when another relative had to go to the ER for stomach pains, he was found to have Diverticulitis and given a class II pain medication to take at home for his pain, until he could get in to see the specialist. Now when that same scenario happens today, we will get sent home with nothing except NSAID’s and tranquilizers! In my own opinion, the tranquilizer is worse because you could get hurt at work or going someplace etc…It is much less safe than giving a few Opioids to get through until you can get an appointment with a specialist.

Well, I say “Pick on the real criminals”, not the “weak or the ill chronic pain sufferers”! I feel afraid and “bullied”, even though I’ve not experienced most of this yet. I pray that I never do. I have experienced enough issues with my Dr. of 12 years leaving me and his entire practice after having written several too many pain prescriptions and padding his own pockets! But what he did was still not my fault! I did nothing wrong! I am a lay person who did what my Dr. told me to do to alleviate my CRPS pain, Chiari I pain and the pain of multiple herniated/bulging discs, RA and OA etc. I never wanted to take any of these meds. I never smoked, drank or took any drugs; not ever! I was just naive enough to think that I could finally trust someone in this life and then the rug was pulled out from under me. (you can read about this in my prior blog posts). I had this happen to me this past year and when I tried to go and see the pain Dr. who originally saw me for several years following the car accident, he said that he “didn’t want any part of that other medical office’s mess”. I guess that was referring to me as a “mess” that he didn’t want to deal with! How rude and inconsiderate of him! I am a real person with feelings and so much pain, that some days I don’t know how I will make it through.

I’ve had the hardest time trying to find a new general Dr. to guide me and watch over me with my history of  chronic pain and dealing with full body “systemic” CRPS now. I’ve had really crude things said to me by a so-called professional physician! Insinuating that I could go to an “addiction pain specialist”. WHAT for? Why? I am not “addicted”! Again, I say, I am a chronic pain sufferer/warrior who has so many real and true pain diagnosis’ and I needed a “pain management specialist”! Which, thank goodness and thank God, I did find this past Summer!

It’s again, very sad that these agencies are truly “pushing” surgery upon people instead of a simple pill that could help. Surgery is much more invasive, painful and not to mention the high cost! OHHHH I get it now…maybe that’s it after all??? They get more money from surgeries!! Hmmmm…..???

Well, I’ve also read that they are taking almost all pain medications away from anyone who doesn’t have Cancer pain. But who are “they” to say that one pain is worse or better than another, unless they’ve experienced both kinds? My cousin had Cancer and she felt sorry for me and did really well with the chemotherapy and such. No, it was not a “picnic” of course it was still horrible. But she feels that my long term, burning, “on fire” pain of CRPS, is much worse to handle than what she even went through with her Cancer! Can you imagine that?

The agencies are trying to also push exercise and healthy eating habits, along with PT and “behavioral therapy” as an alternative to “pills” to help pain. They are saying that the goal in all of this is to stop the overdoses and the prescription drug abuse. Well, I say to that and to them: “A person can only take the medication given to them by their Dr. and if the Dr. is a good one, he or she will only prescribe the amount needed. Then why take it away if the patient is doing everything right ? If I am doing what I am told and only taking what I am allowed to take, then why take it away from me when it gives me some kind of  a little bit of so called “life”? There are only bad Dr’s and bad people who are hurting the rest of us. The innocents should not suffer because of the crimes of a few!

The main issue here also, is that these new guidelines are not medically sound or proven (according to Pain News Network).  The CDC proclaimed that they used a panel of different members from several different medical backgrounds for the grounds of these changes in prescribing or rather now non-prescribing of Opioids. Not allowing any pain medications to help alleviate real and true chronic, long term pain for patients dealing with chronic long term horrible pain day in and day out! It is very scary to even Pain advocates and patients alike that these new guidelines will be taking away any kind of life we once had. Those “people” tried to say that the pain meds stop working for everyone. that everyone gets addicted and gets Hyperalgesia and that the meds stop working for everyone. This way they are “lumping” together “everyone” and we are all individuals. My pain has been managed pretty well, with some ups and downs but  I never ask for more. I do what I’m asked to do and I do what I’m told to do. I have to make my life work around my pain and my meds and my lowered medications.

Many patient advocate groups have written to the CDC and the FDA and explained that they are not being transparent. They used biased teams of people to make up these new “rules” and guidelines. They didn’t listen to the voices of the Dr’s and people who live in the “Pain world”. They also found that many of the people who put these new rules together have a monetary gain in such matters! The government and these agencies are practicing inhumane treatment towards real and true pain patients.  They allowed insurance agencies and others who would gain from these guidelines to make decisions for us.

The things that are occurring are illogical and inconsiderate; let alone inhumane! I have been on a certain dosage of medications since first my car accident in 2002, when I suffered multiple injuries and surgeries (10). Then I had a stroke and a heart attack in 2005 and 2006. Then later in 2007, I suffered after a foot surgery and ended up with CRPS in my right foot, which then traveled to my left foot, up to both knees. Then when I had a pacemaker surgery in 2013, my pectoral muscle was found to have worn a hole right thru it, from my 1st pacemaker. They had to rebuild my whole pectoral muscle. It was a very traumatic even for my already pained, fragile body. I ended up with full body/systemic CRPS. I have it everywhere. Taking a shower for me is like bullets pelting me and I need my husband to shelter me from the water while I try to get clean. Believe me, it’s nothing weird or kinky! It’s the only way I can keep my body somewhat clean now days. I have been on the same dosage of meds for a very long time now. I never ask for more and on my “bad days” I just stay in and don’t do anything much at all. But please don’t take that away from me because I’ll never be able to do anything at all, not even will I have my 2 hours daily, if they try to stop everything and take it all away even from the responsible ones who do exactly as they are asked.

One Physician wrote in the Pain Network News, that he has had patients on higher doses of Opioids for over 20 years and they have some semblance of a life. He even agrees that taking these meds from us and these other people like us who’ve been on long term dosages and who will most likely have to stay on them for their lifetime; is cruel and inhumane treatment! He said that they are “forcing us into suffering, sickness and possibly even death!” All because a group of “people” decided that my medicine and these other people’s medicines are suddenly claiming the lives of “too many”  and stating that our pain medications are “dangerous”. Well, they are not if they are prescribed by the right Dr and maintained by the right Dr. and as long as the patient follows all of the rules and does what is right and good!

They tried to also scream “HYPERALGESIA” to everyone on Opioids for any length of time! If it is working and has been, then how can it be “Hyperalgesia”? If they really think that Hyperalgesia exists and is a problem with high or low dose Opioids, then this one Dr. who did not give his name, said that “we must remove all intrathecal Opioid pumps because these devices deliver a MEQ directly to the CNS receptors that is far in excess of any dosage we can achieve by peripheral administration.”(Painnewsnetwork.org)

Please use your voice and be heard! Help yourselves, help your sisters, mothers, fathers and brothers. Please lets everyone who’s suffering with long term chronic horrible debilitating pain, take a stand and rally around one another. We need to form advocacy groups that will work together for the common good! Not “my group” and “your group” but we need an “our group” that will help us and speak up for us and with us and take a stand against all of the knuckleheads who just want to make a profit and don’t care if we live a fuller or lesser life. They don’t even care if we actually live or die because if we are no longer a “productive member of society” in the eyes of our government, CDC, FDA and the others, then we will not be heard nor will get the help that we deserve. Please write to your State representatives, and to our Federal agencies, House of representatives….anyone who will hear us and not just let it be words to the wind! Please let us stick together and not allow ourselves to be treated so hurtfully and inhumanely for no common good whatsoever. But only for the lies!

Thank you for reading…if you need me to find a place for you to write, or if you want more information, please ask me in the comments. I want to take a stand and really help to do something about this awful mess. It’s just not right because I just know that they would never take Coumadin or Warfarin (blood thinners) from someone like me with Atrial fibrillation. They wouldn’t take Insulin from a Diabetic either. Then don’t let them take pain medications from legitimate long term chronic pain sufferers. Please don’t be quiet! Let’s help each other and let’s take a stand against this bad situation; this life altering and life taking situation!

To me and many other pain advocates and pain patients alike, it feels like this “war on Opioids” is not for us, but against us! Many people who have health insurance now and especially Obamacare, have very high deductibles in the $5,000.00 range! That is crazy ludicrous! They cannot afford the treatments or the medications. What can we do? We have the FDA and the DEA and the CDC all trying to make it seem as though all pain patients are criminals as well as all Dr’s prescribing any pain meds are also criminals or “drug dealers”.  Do you know that I read someplace, and I cannot think of where it was at this moment, but when I do find it, I will mark it down here; but less than 5% of Opioid taking patients are “addicted”. We may be “dependent” but we are not “addicted” to the pain meds. They don’t make us “happy” or ‘high”; they merely lessen our pain so we can have some kind of small life outside of our pain. The dept. of justice and all of these places are targeting our pain management Dr’s and making them jump through hoops to help us at all. Therefore comes the pushing to get the surgeries for the pumps and the stimulators, so they don’t have to “deal with” the medications or the Feds! It’s not fair to intrude, or better said, “invade” our bodies with metal and cords and electricity etc. Giving us more “scars” and more pain flares and more infections to worry about. Leave us alone and go after the real criminals, please won’t you? #waronpainpatients #painedlivesmatter

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