ASL Cover of “Closer” By The Chainsmokers

ASL Cover of “Closer” By The Chainsmokers

 

I used to be an Interpreter for the Deaf. I worked at a University hospital interpreting for Deaf patients and also I worked at a school for Deaf children in AZ. In 2002, I was in a horrible car accident. A man ran through a red light and I now live with several High pain chronic illnesses (CRPS is just one of them). I also live with the effects of a TBI and was in brain injury rehab for 3 years. I do the best I can now; as I cannot hear the song and lyrics very well together. I do this for entertainment/enjoyment and for fun. I do this to bring myself HOPE on a bad day. I am hearing impaired and I do this for enjoyment and entertainment. I do this for myself as much as I do it for you. I claim no copyright to the song or the band the chainsmokers.

Opioids Kill Pain, Not People

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)

     Dear Mr. President 

     Dear Mr. President 

March 12, 2017

President Donald J. TrumpThe White House1600 Pennsylvania AveWashington, 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

True Colors-An ASL Cover

True Colors-An ASL Cover

I have done an ASL Cover to the Song “True Colors” from the Orig. Disney Movie “Trolls”. If you haven’t seen it yet, you just must! It is adorable for all ages and has wonderful life lessons in it for all of us to follow. I just loved this movie. The song is sung by Justin Timberlake and Anna Kendrick.  Please Please go to my You Tube Channel . ASLSUZYQ and Subscribe to my channel and feel free to comment on my video and watch other ASL Covers that I have. I do this for fun, entertainment now because I once was an Interpreter for the Deaf and now I have lowered vision and 2 hearing aids for moderate hearing loss. I used to Interpret for Deaf patients at the U of MI hospitals. I also worked as an Interpreter for Deaf children via magnet schools in Livingston County, MI. Please enjoy and Requests welcomed!IMG_0222

 

No Competition, No Winners!

No Competition, No Winners!

We each feel like our own pain is the worst and that what we are going thru is the hardest and most devastating. In a way, this is partially true. That is because when it is “YOUR pain” then it IS “YOUR” WORST.  What I mean is that everything can be challenging when you feel like your own story is the only one that’s difficult like this.
Consider Brian Greene’s idea, as he writes about the string theory in clear English : He points out that, “in an infinite universe, each of us is at the center”. Exactly, my point and what I’m trying to convey here, today. For example, one person may feel that whatever they are going through with chronic pain is the worst pain they’ve experienced in life…ever!, The patient may feel this way due to the possible negative outcome of certain treatments or the lack of treatment and/or empathy, or understanding. One person could feel that their situation is the very bottom of the “pit”. The true “fires of Hell” very well may be his/her situation. The outcome could be a “loss” of the use of his legs; to him this is the worst thing that he could imagine. For another pain patient, or an RSD/CRPS sufferer, she may be afraid and feel that her suffering is the hardest that anyone can imagine because RSD/CRPS is #43, which is so very high on the McGill pain scale. She may scared because she is so young and has her whole life ahead. For her, this disease is taking so much; it is a thief of sorts! She could lose so many possibilities in life.  Maybe she has indeed lost so much already? What about the younger ones who’ve never been able to experience true love or the dream of being a mother and holding that baby for the first time? Maybe the dream is something different but what if they don’t ever get to do the things that I got to do prior to my pain? There is much to lose at each and every stage, when your life gets harder, the pain gets worse.  It even gets more difficult to find things that make you smile again.

Today it feels to me as though life for patients with chronic pain has become much more challenging. We have to worry about going to different specialists and having a legitimate “Pain Dr.” now instead of just going to our General Practitioners or Primary Care Docs. We must have and visit a Pain Dr. every month or 2 months, if we are on any kind of Opioids. Today we must do urine tests, the million questions (yes, I’m exaggerating), the signature or the signing of a contract to prove that we will not seek out any other Dr. or even get any other medications for pain from any of our other Physicians. Therefore, if we have a surgery, our pain meds must be authorized by our current Pain Physician, before we can get them or take them! The new “CMS strategy for use/misuse of Opioids” is happening as I write this article . Let me explain.  This is the Centers for Medicare and Medicaid Services. They intend to curb opioid misuse and abuse. But in the meantime they could cause needless suffering to many of our most impoverished and elderly persons in pain. There were posts made by me and Letters sent out by the U.S. Pain Foundation & RSDSA, regarding this. There were tweets, posts, letters etc. going around to get emails out by Friday, March 4, 2017;  to help change some of this strategy before the deadline at midnight Friday. The new Strategy doesn’t go into effect until April 7th, 2017, but we needed many emails to go out.  We needed these emails to help fix what may be a problem for many chronic pain sufferers who rely on Opioids for pain relief.  (*For more information visit: The U.S. Pain eNewsletter, Feb 1, 2017 “CMS publishes new strategy to combat opioid misuse”)!  There are obstacles coming toward us from all directions it seems right now. There’s also the way that Pharmacists can be “the Dr.’s” now and they, along with our insurance companies, can override what our own physicians direct us to take for pain medications. Things are changing and getting more difficult for many persons living with high pain illnesses. I have had people come to me in the groups that I administrate. They have asked me “What can I do? The pharmacy wants me to come back every 5 days to get Opioid pain meds that I’ve been on for years? I cannot drive and it’s an hour away from my house! What can I do?” I feel terrible because I can’t “fix” it for them. I’m writing letters, tweeting & emailing, but no one is listening to me either; not yet. I don’t mind if they change the way the medications are made, such as changing it so they cannot be crushed, broken or changed in any way into another form.  That’s fine with me because I am a legitimate pain patient, who takes my pain medication responsibly at the right times and on the correct dates. But God forbid if you do anything different or wrong! I was questioned because my pharmacy took 6 days to get my medication in!  My Dr. wanted to know why “I waited 6 days to get my pain medication”. I felt like a criminal or like a scared child! This was no fault of my own and in fact, my husband tried to check around but nobody else had my medication in during those dates either. I was punished because I’m the one who started getting very ill for those 5 days! I had to go through that because even though I go to the same pharmacy monthly and for the same medications; they didn’t have my specific  medications that month! When I returned to the Pain Dr. appointment, of course he wanted to know why there was a “lag” in time for picking up my meds. It’s just getting harder, more scary and more confusing. I’m tired and I can see why people feel like giving up sometimes. But we cannot give up! I will not ever give up!  I have to keep on fighting for my rights and for all of our rights!

After my heart surgery in February, 2013; I found out that my RSD/CRPS had traveled to my heart as well as my whole left side. I have so much pain in my neck, knees, lower back, hands, feet, arms, legs etc, from several of chronic pain illnesses or issues. At times, I’m afraid, sad and I get lonely too. But I know that this is only “MY” worst, not anyone elses. I only truly know my own private pain. We all have our own health and pain issues that are specific to each of us. While I can’t take the pain “journey” for you, I can go through it “with” you in a personal way. I can be your friend, listen to your heart and because of computers, I can virtually reach out to you via my groups, my blog and even articles.

Every one of us has real fears, anxieties and true pain.  I recently read a story about a poor woman in terrible pain with great fear. I do understood her fear (to a point) and her pain (only from as far as I can draw from my own experiences). Then I read about another, younger woman in the same kind of horrible pain. In both of their personal stories, deep fears and pain came through. The younger woman feels that she has so much to lose, as she hasn’t even started her life yet. Some of us have already had our children and we’ve had “real” jobs or a career for a while. We may have even been through some good &/ or exciting adventures prior to becoming chronically ill? Maybe we’ve done some fun things in our lives or accomplished a goal? Some of the younger people living wth chronic pain have not been able to achieve any of those things, not yet, anyway. What I see through my patient advocacy work with chronic pain and Invisible Illness; is so much love and compassion. Sometimes it is dampened and even overidden by our real fears and the feeling that we are “the person worse off”. We each may feel that “it’s not fair”  or that our pain is “the worst”.  But it is our own personal worst; which is different for every individual. When I think of pain in this way, I realize that we all have essentially the same inner feelings. If I can stop thinking of my own situation and my pain, and step back for a moment; I’m better able to  empathize with others who live with pain. I know that many of us share the same inner feelings of solitude with our illnesses at times.  We  cannot give up on ourselves or each other. We must not stop trying to fight for a life that we each deserve.