The Happy Challenge


The suffering of the chronic pain patient can be mostly silent, somewhat invisible.  People will sometimes ask “where are the bruises, the medical machines or the marks on your body”?  Let me explain about the “hidden bruises”, the “quiet bleeding inside” and the sporadic silence.  The “silent screams” are more often quiet because we are seen as complaining if we are too vocal.  When we don’t say anything or we look “fine”; then we must be Okay because we appear to be fine on the outside and we are not complaining. We may verbalize that we are tired and then they say “Oh yes, I’m tired too! I know what you mean. It’s normal to be tired at our ages. You just have to work through it!” They don’t realize that we have to “ration our spoons” throughout the day (see the “spoon theory” by Christine Miserandino, at http://www.butyoudontlooksick.com).  There’s no sense trying to explain it to them because it is not a battle of words that we have the energy to argue about.  Most people who do not live with and deal with daily chronic pain, just cannot understand or fathom the idea that just taking a shower and getting ready for our day, can use up so many of our “spoons” or so much of our energy.

We may agree to attend an event or a family outing if at all possible.  We don’t intend to break a “promise” but when we go against our own best judgement; we may then suffer.  Sometimes we go, but cannot stay very long; they say we are “phony”.  We try to hide how we are feeling, but sometimes even with our greatest strength, we have to submit to the pain and fatigue. We need to listen to what our bodies are telling us.  That’s when we start losing friends and family members. We start getting invited to social events less often. Though we really wish to be invited and truly want to go, if we possibly can.

Next, we have the other chronic pain patients who have knowledge of the “Spoon Theory” and some of the similar feelings that we all experience daily.  Then for one reason or another, maybe because we are not all at the “same place at the same time”; we may be judged again by our peers. It hurts, because we all experience the chronic pain and fatigue, but we may each handle it differently. I try not to judge anyone for doing what they need to do to take care of themselves. When you only “know” someone through social media, you don’t really know them or their daily struggles. You only know what they choose to share.  It hurts when someone judges me for appearing to be active on social media. It’s true that I am an Ambassador for the U.S. Pain foundation, I’m a freelance writer, a blogger, a mentor, a patient leader for WEGO health and I am a health advocate. But I don’t have to do anything on any day or days, if I don’t choose to. I may be in my recliner for 20 out of 24 hours some days. But that doesn’t mean that I cannot encourage, counsel, connect or give TLC to others.

If I do an event, then I am literally “down” for several days afterwards. It is worth it to me, just to stay as positive, helpful and useful as I possibly can be.  I also don’t admonish others who are not in the same place as me.  I remember times when I didn’t feel as happy inside and I still have periods like that. The ups and downs are pretty normal within the lives of chronic pain patients.  Sometimes when in horrible pain physically and/or mentally; people generally think that others should be able to see or feel things the same way as they do.

Now, I have a different strategy for dealing with the pain. I utilize every possible venue to express my own pain and my reaction to the changes that it has made in my life and our lives. I am not always positive, nor am I constantly happy and upbeat. But I do try to be positive as often as possible on Social media. Sometimes people’s lives depend on it. Naturally, we all have our darker times; but I try to rarely share those publicly.  I’m not saying that I’m right or this is right for everyone. I’m just sharing how I deal with my own personal pain.

I felt the need or the urge to write about this because I received a private note from someone. It really hurt at first and I was crying. I participated and usually do participate in the various online events and “photo challenges”. It may be for U.S Pain foundation, for WEGO health or for RSDSA etc.  It’s just therapeutic for me and I enjoy being a part of these online events. If I can cheer up one person then it is worth it for me.  If I can show one person, a light at the end of the tunnel, then I have given them hope.   Someone sent me this private message and it said;   “Not to start anything but….why do you devote so much time and trouble to your blog, your websites, groups and writings?  Why don’t you just deal with the pain, like the rest of us? YOUR “Happy challenge” was yours not mine…. I guess we don’t see it the same way. I just try to get thru the day w/the least amount of pain possible and thank God when I awaken the next day.  No drugs, no docs, just PT and pain shrink….”.  Like I said, at first I cried and I was hurt by these words. For a few moments, I felt like it was and has been all for nothing.  But it’s not for nothing. We are not all in the same place at the same time.  There are stages of chronic pain, just as there are stages of grief; they are pretty similar. But one thing for sure, I don’t put others down for taking or not taking medications or if they choose to use an SCS or a pain pump (for which I’m not a candidate, due to an Immune deficiency disease). I feel strongly about doing whatever is necessary to achieve the best quality of life that I can possibly have.  I don’t choose to go to as many Dr’s as I once did. I try to just visit the specialists that my life depends on.  I don’t just “wait for the next day to arrive”.  Though I do thank God every day, for giving me life. I also don’t do PT after 9 years of doing it and I don’t go to a “pain shrink”.  But that is my choice.  I do take a normal dose of Opioid pain medication, of which my life “depends on” now.  I’m not “addicted”, but “dependent” on this medication. But guess what? I was able to attend my youngest granddaughters’ first birthday party because of this.  I GOT the pleasure of attending a U.S. pain conference this past weekend.  I got to do it and got through it, because I am able to take a pill that helps me get through these events.  Yes, of course I suffer still, for a few days afterwards, but I have the memories and so do the “little ones” and the other people who I got to spend time with. I also got to experience other persons like myself, who want to make a difference and try to help in the world of chronic pain.  It’s not for everybody and that’s OK.  We are all different, it’s supposed to be that way.  I don’t particularly enjoy things like gardening or cooking. Some people couldn’t imagine life without those things. I am me and that is OK.  I cannot please everyone and it’s alright.  I’m not crying any longer about the message. Instead I feel badly for the person who wrote it.  They are in a darker or more sad place than me. I will be there for them if or when they are ready.

It’s a difficult kind of life to explain when you look fine on the outside, your photos look like everything is “normal” on the outside; but my body burns and aches even through the smiles. I’m just like some of the other chronic pain patients, but I choose to outlet my pain in different ways. Nobody says that my way is the right way, but it’s the right way for me to express my pain and try to help others in the process.

 

 

Under-treated Chronic Pain Can Kill


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Untreated or under treated Chronic pain can kill! There are many articles that discuss this topic but I’m writing from the chronic pain patients perspective. Most things that are written are authored by Dr’s and others in the medical profession. But for me and for us this is real! Sudden cardiac death is a frightening topic to discuss. This is true especially because many chronic pain patients live with the risk factors that are written about in the articles and medical journals etc. Personally, I have a pacemaker for not only Dysautonomia & POTS, but for an Arrythmia called “Sick Sinus Syndrome”! Additionally, I. live with Atrial fibrillation, MVP & TVP (mitral valve & tricuspid valve prolapse), CAD (coronary artery disease) & long QT syndrome! In 2005, I had a heart attack and in 2006, a CVA or stroke. Enough about me, but I’m trying to paint the picture that I am not alone in this. Many chronic pain patients have several comorbidity’s. If the CDC continues with this crazy “war on opioids”; taking our pain medications down to dangerously low & restricted levels, people will die! I may die as well, and I’m not being dramatic!

So many people, including our clueless government representatives do not realize that severe untreated chronic pain can lead to death. They think it is just an innocuous “pain in the behind” for those that live with it. It doesn’t interfere with their lives or the lives of the CDC, FDA and several others such as, Big Pharma and the many physician run drug treatment centers in the USA. But when suddenly, chronic pain “hits” one of their family members, then they start advocating more. But why do they have to wait until it happens to their family members or even themselves? Why can’t they listen to our cries of suffering now, before more of my friends die suddenly from the agony of living with the daily unrelenting chronic pain without any reprieve? Does the government or the general public even realize that Veterinarians get about five times more education hours than medical students get for human beings living with chronic pain? I read that there was a study done in 2011, and the Journal of Pain found that the United States medical programs only allot approximately 5 hours of teaching time on the management of chronic pain. Our Canadian neighbors give their medical students a whopping 19 1/2 hours! This is where the medical professionals who educate the incoming physicians are at fault for their part in this “crisis” as it has been called.
Just this past week, the pain community, including the support groups that I administrate online, lost another chronic pain warrior. I lost my 7th friend in just over 2 years! This is the 3rd friend that I have lost to chronic pain and patients diminished access to pain medications. In my experience, it continues to be the same story; in that the chronic pain patient tells their significant other or family members that they are feeling worse. They go to bed to try and relieve their pain and they never awaken. My friends husband found her slumped over in her chair, late at night when he checked on her. It’s not unusual for most pain patients to stay up very late watching T.V. or “playing” online to keep our minds off of the pain for awhile. When the coroners do an autopsy on a person who has died suddenly, and they find “drugs” in the bodily fluids; they blame the opioids. These are educated people, toxicologists an forensic medicine physicians. They seem to just blindly blame these deaths on the opioids instead of seeing the possibilities that exist. It could have been death from pain that was unrelenting and untreated and/or misdiagnosed and under treated. Maybe more of my friends died from the sudden drop in their pain medications?
What is it going to take to get the government to listen to our pleas? I’ve written and sent the same letter to the White House twice and have gotten no response. I’ve made videos on YouTube to explain this crisis in Chronic pain community. I was hoping for at least one of them to go viral. But instead, the viral videos are about usually someone falling off of a chair or a baby biting his brothers finger! How do we get them to listen to us? I agree with the fact that Opioids should not be the first option for people with chronic pain. I also agree with the research that’s being done on medications that cannot be crushed or melted to become more potent for those that do abuse them. But for those patients who have been on a “normal amount” and steady dosage of Opioids for a long period of time; why not leave them to the physician(s) that know them? Let the Doctors who’ve treated them for many years, take care of their patients without fear of Federal agents breaking into their clinic during hours and scaring everyone half to death! If someone has been taking opioids for a long time and the dosage remains the same and it’s working for them, can we not leave them alone? Let them live some semblance of a life outside of their bedroom or recliner. When I say “them”, I mean “us” and we are dependent but not addicted to these medications. These are not “powerful, strong meds that loop us out of our minds” as I’ve heard on several occasions. These are the medications that we need, in order to have a small amount of active time during the days. We aren’t asking for more and we agree to the submissiveness and feeling of personal character attacks with urine drug screening. We sign the contract with our pain management physicians. So why not just let us live our lives and stop attacking us and calling people who live with chronic pain, “drug addicts”.
Anyone who calls people living with daily struggles of unrelenting pain, “addicted”; needs to learn more and be educated about opioid use with chronic pain patients who have several high pain illnesses. Not only do they need to learn more, but they need to be empathetic and try to put themselves in the pain patients place for a moment or two. People, especially those in positions of power; need to think about what their lives would be like if they could barely get out of bed in the mornings. What if they couldn’t go to their fancy dinners or dances, due to chronic pain and and unrelenting fatigue? I’d say they wouldn’t like it very much and neither do we! How do we get these officials to learn the difference between the words “addiction” and “dependence” before more of my friends die from under treated pain or lack of any treatment?

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Some Kind of Normal


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I would like to respond to an article from May 23, 2017; written by Steve Ariens, Pharm D, or as we know him, “Pharmacist Steve”.  I want to say “YES, Pharmacist Steve, WE ARE Quite Different”! This week I read an article entitled, “A Country of Drug Seekers” (National Pain Report, May 23, 2017).  In the article, the author, A Pharmacist who is known as “Pharmacist Steve”, stated that “we should look at those who take/use opiates and controlled substances… and consider those that take them legally and those who take them illegally-because our society will not allow them to obtain them legally, and ask “Are they all that different?
He goes on to say that “both groups are suffering from depression, anxiety and physical and mental pain.” Also that “both are trying to “improve” their quality of life….just that their own opinion/definition of “improve” may be quite different.”

I will agree that everyone, or the majority of the public want to “improve” their quality of life.  That’s a given, isn’t it? Whether you are a pain patient or an airline pilot, most people want to consistently improve the quality of how they live.  I vehemently disagree with his assumption “are the two groups all that different”?  Nothing is the same about these two groups of people. Persons with chronic illness do not obsessively think about and seek out something to make them “high”. A drug addict has a mental illness, along with an addictive personality; and does exactly that. I’m sure some chronic pain patients also have mental illness, along with some Dr’s, nurses, housewives and Scientists. I believe the number that research had noted was that less than 4% of chronic pain patients actually become “addicted” to their pain medications.  In fact a very high profile Pain management physician, Dr. Forrest Tennant, M.D. Cited that percentage in an article at NPR, October 2015.  I don’t agree that we “are all suffering from depression, anxiety, physical and mental pain”.  The mental anguish that “we”, the pain patients, live with now days; is from the fact of not knowing if or when our treatments/medications will be withdrawn! I would say it is more similar to a patient on dialysis not knowing if or when their dialysis facility is going to close and there’s not another one for hundreds of miles!  It may be similar to a Diabetic wondering if their insulin was going to be taken off the market completely? Then how would they live? What would they do? They would be in “mental anguish”.  Without pain medications, (*that some of us have been on for many years, doing well, with little or no side effects); how will we be able to tolerate the unrelenting daily struggle with high chronic pain illnesses? Some  of which are up to a #43 on the McGill pain scale? There are some people that are living with chronic pain and depression, but we are not all living with pain and mental illnesses. There should not be a stigma, by the way, to living with either or both of these issues.

I also strongly believe that chronic pain patients who sign a contract with their Pain Management physician, agree to take urine drug screening tests and take their medications exactly as prescribed for their legitimate diagnosis’:  should not be in the same “category” as those who are “abusing” and “using” illegal substances to get “high”.  We, the chronic pain patients are very different in that we don’t all have “addictive” personalities.  In fact, at my pain clinic, I went to see a Pain Psychologist and that Dr. told me and actually put it in writing, that I “do NOT have an addictive personality”.  I may not be the same as everyone else, but chronic pain patients are not the same as drug abusers who use Heroin and cocaine to get a “HIGH”.  We don’t get “high” from our pain medications.  I run several support groups for different chronic pain illnesses.  I have spoken to many chronic pain patients and I can speak for the majority of those who have been taking opiates for several years. We do not “crave” our pain meds, nor do we think about them all of the time.  We don’t sit around and wait for the next round of pain medications and obsessively ruminate about them.  Mental “Pain” and mental “illness” are not one in the same either, according to anything that I’ve ever read or heard in my lifetime.

I have made numerous videos on my advocacy YouTube channel and I’ve written several articles on the subject of “pain patients being lumped together with drug addicts”.  There is a difference between these two groups of people.  Time and time again I am making memes for Social Media, writing on the subject or speaking about it.  I’m really growing weary of having to defend my community of chronic pain patients against those in Washington and others with authority over us.  When Pharmacist Steve stated that “some groups try to draw a line between themselves as being chronic pain patients and those who abuse opiates.”  Well, of course we draw a line between drug seeking behavior, drug addiction and legitimate chronic pain patients who need their medications. Drug addicts live for their next dose or next “high”.  While the chronic pain patient needs their next dose of pain relieving medication in order to live.  We need pain meds so that we may have  some semblance of a life outside of our bed or recliner.  There is a “line” between us, it is like comparing “apples to oranges”.  How many times do we, the community of legitimate chronic pain patients, have to fight for our dignity and our separateness from stigmas that are put upon us?  If you want to “lump us together” with a group of people, why not “lump us together” with other medical conditions in which the patient is “dependent” on their medications?  According to Dr. Tennant’s calculations, as a leading expert in pain management; 96% of chronic pain patients do not become addicted to their Opioid pain medications.  Those of us who have been on a regular dose for many years and who are doing well, should be left alone!  We are dependent just the same as a heart patient is dependent on arrhythmia  or high blood pressure medications.  The group of people that we have the most in common with are those who take medications for a chronic illness.  The kind of medications in which their bodies are “dependent” upon in order to live some kind of “normal”.  We, the chronic pain community just want to “live some kind of normal”.  We are tired of being grouped  or lumped together with illegal users and abusers of drug seekers.  We must remember only two words.  These words are “dependence” and “addiction”.  They are as different as night and day, black and white and medication user verses drug abuser.

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Chronic Pain In A Culture of Intolerance


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Being a Health advocate/activist” for people like myself, who live with chronic pain; is becoming more of a challenge.  I’m feeling both proactive and protective.  I want to help change the way society and the government thinks about chronic pain and the persons living with the daily struggles from it. I also want to help put a more positive spin on something that is very difficult to stay positive about.  While Governor Chris Christie is becoming the “drug Czar”; he is talking about changing  many lives in a negative way.  Our President is putting persons in charge of what he has only heard of as “the Opioid Epidemic”.  He listens to what others tell him and he reads about statistics or numbers of deaths; not the number of “people who have died”.   Those are people who have passed away not numbers on a screen. These people each have or had their own story to tell and nobody was listening.  I’m trying to get someone to listen to us.   As a chronic pain patient myself, I can say that we feel like the rules of the “game” are being changed, without talking to any of the real players.  When you only are only told one side of a story over and over again; you are not going to get the whole truth or the entire story.  When the President or the Governor talks with people who have lost someone that they love due to a “drug overdose”; then that is the way the story is going to spin.  There are journalists who have lost someone they love, to a drug overdose and they are writing over and over again about the “horrors of the Opioid epidemic”. There are reporters who are speaking against Opioids on the Television and producers making short films about “The Oxycontin Express”.  I can only say that if I was misinformed and heartbroken, that I might do the same thing. But I’m not misinformed and I honestly feel that if I lost someone to an overdose, I would still try not to hurt anyone else while I was in mourning. I wouldn’t try to “punish the whole class for the behavior of one”. I would not want to go on a mission to try and “save everyone else” (while hurting so many and possibly not even knowing) to make myself feel better.

I turned on the TV the other night and one of the news stations had a week long special about “the Opioid Epidemic”. I was yelling at the screen and telling them that they hadn’t a clue! The person they had on as a guest, was someone who had broken his leg, had surgery and had become an Opioid addict! That is not the same thing as someone living with daily chronic pain and knowing that  life will always be this way.  Persons like me who live with chronic pain day in and day out, do need to try physical therapy, and other first choice treatments available.  We realize that we need to give different options a chance.  But when a patient with several high pain illnesses has tried many alternatives; and is not a candidate for other options;  then they/we need reassurance.  We need to know that the medications that many of us have taken for several years and that give some semblance of a life; are going to remain available and nobody will rip the rug out from under us!

I am in a group of people called “chronic pain patients”. We are not drug addicts! The definition of an addict, according to the Dictionary (on Definitions.com) is this:  “to devote or surrender oneself to something habitually or obsessively”.  I can speak for myself and the hundreds of chronic pain support group members that I mentor.  We  take only the medications prescribed to us by our physicians and/or Pain Management Physicians.  To clarify, I will explain further the difference between the addict and the pain patient.  The majority of chronic pain patients take their prescription pain medications (or Opioids) responsibly.  The medications for pain are taken per the instructions of a legitimate pain management physician or well known doctor.  Long time pain patients continue on a steady dose of pain medications and do not crave more than that. In fact, the truth is that just about all chronic pain patients, myself included, don’t want to be on the medications that we are taking.  On the other hand, an addict has thoughts about their medications/drugs constantly and overwhelmingly.  They can’t function because they’re thinking about their next dose all day long.

I read an article awhile back called “The Word is Credibility-Not Stigma-in the Prescription Opioid/Heroin Epidemic”; that really hit a nerve with me.  It upset me because the writer puts down the responsible chronic pain patients and “lumps” us together in the same category as heroin addicts.  She wrote about the deaths of people who have overdosed.  But how many of those deaths were people who took only their prescribed dosage of pain medications?  I read another article in which the writer (*Denise Molohon, a guest columnist for PNN January-2016)) stated that “the CDC even admits to giving out skewed data”.  The CDC has qualifiers for their “Morbidity and Mortality weekly report.  She researched the information that she was given and found that those qualifiers are as follows:

  • “approximately 1/5 of drug overdose deaths lack information on the specific drugs involved. Some of these deaths might involve opioids.”
  • “Heroin deaths might be misclassified as morphine because morphine and heroin are metabolized similarly, which might result in an underreporting of heroin overdose deaths”

The writer also stated that “if heroin deaths are being misclassified as morphine, which results in the “underreporting” of heroin overdose deaths, then wouldn’t the opposite also be true? That there is “over-reporting” of morphine deaths, which are then misclassified as prescription Opioid deaths?”  Also, when we are reading or hearing reports about fentanyl overdose deaths; most of those deaths are from street drugs fentanyl and not the prescription pain medication.  We just can’t lump medications and street drugs together, that is irresponsible.  Only “5% of people who are prescribed Opioid pain medications, go on to become addicted”,  according to our own National Pain Report in November 2015.  As a legitimate chronic pain patient, I can verify that we only take pain medications to be relieved of horrible daily chronic pain, nerve pain and the pain from such illnesses as CRPS plus many others.  We don’t become “addicted” to our prescription pain medications.  Our bodies may become tolerant or “dependent”, but  we are not addicts.

There are support systems such as the U.S. Pain Foundation and RSDSA who encourage the chronic pain patients to not be hopeless.  They empower us and encourage us to do whatever we can do but never more than that.  We have a voice and it needs to be heard.  Anyone who hasn’t experienced chronic pain first hand or even as a caregiver, hasn’t any idea what it’s like to be in horrible pain 24/7/365.  When you are finally given something to alleviate that pain somewhat (but never 100%), it is a relief.  But then because of the people or groups who are working very hard to take our pain medications away, we become fearful each month that goes by.  We fear that one method that helps us to get out of bed each morning without writhing in pain, crying and screaming out in horrible nerve pain; could be taken away at any moment.

I feel that people who are doing this are doing it for the wrong reasons.  People need to be educated regarding Opioids instead of being afraid of them.  There are some chronic pain patients who are not candidates for other types of pain control, such as the pain pump or the spinal cord stimulater (SCS).  Taking a medication away that helps so many pain patients to just put their feet on the ground in the morning, seems cruel.  Hurting someone because you have felt “wronged”, is just terrible. There needs to be some kind of shelter from the world of intolerance.

 

 

 

 

 

The Opioid Conundrum 


 


Hello Luvs,

In light of this 2016 “Pain Awareness Month” and with what happened so recently to my friend, fellow pain warrior and fellow U.S. Pain Foundation Ambassador; I feel the urge to tell a story. It’s actually two stories, hers &  mine, but they are  within the same idea and fit in this article.

So our own dear Emily was out of town doing some advocacy work and ran out of her pain medication! She takes a synthetic opioid “Tramadol”. Her Dr nor pharmacy would help her as she was miles away in so much pain that she could not drive! She tried to call in and ask if she could just “get a few meds to get her through until she returned home”. Again, the answer was “No”! She was crying and almost hysterical calling around to different places, asking for help. She knows, she said “what she must’ve sounded like” to those on the other end of the telephone! But just like me, Emily never wanted these medications! Like me, she was reluctant to start them because she never wanted to be dependent on the meds! I went through that same dilemma for 3 years, until the PMD had his pain Psychologist, talk me into it and told me “not to ever be afraid” and to “trust them”! They even tested my psychological profile, which proved that “I don’t have an addictive personality “!

I have been through this similar situation once on a trip and then again at the end of my journey with one type of pain medication.

My family and I were returning home from AZ during our February break vacation. It was about 2009 & many planes were not leaving on time or at all! I had my wheelchair, which had already been boarded onto the airplane. I was prescribed Fentanyl “lollipops” for breakthrough pain and only brought enough for the trip. Suddenly on a loud speaker, it was announced that our plane could be delayed until Wednesday or Thursday! This was Sunday at noon! Let alone the fact that my husband is a teacher and had to return to work that next day, Monday! I was frantic, afraid, hysterical and worried all in one big thought pattern!! My wheelchair was already gone onto the plane and I could be in pain for those next 3 or 4 days! I’d already lived through a heart attack and a stroke /CVA ! I would go through withdrawals! I’d feel horribly ill and possibly suffer seizures or subsequent stroke!!??? I was so afraid and finally relieved when at the last minute they told us to board the plane quickly “because the pilot & staff had to be up in the air within 10 minutes or they’d be grounded due to too many logged working hours”!! We made it home without a trauma, but I knew in my heart that I absolutely despised being “married” to these medications!!

I relented and started taking the Opioids after 3 yrs of epidural, injections, PT/OT (for 8 yrs total), biofeedback & more! I was convinced to take them and told “not to fear”! 

In 2014, I got a letter from our medical insurance company, stating that I “had to have a pain management physician agree with my General physicians treatment plan” or they’d stop paying for my medications altogether!  The very next day I had an appointment with my GP. (*side note:  after 3 + years of the misc treatments , including pain meds, my pain managemnt Dr. told me that due to my Combined immune deficiency disease, I was no longer a candidate for the Spinal Cord Stimulator or the Intrathecal Pain pump! He told me that he was “looked at under a microscope by the Federal govt.. Therefore he was “passing me over to my GP” for medications only. He said he’d consult whenever needed for ideas etc.)

I went to my scheduled appointment with my GP of 13 -14 years, the next day. I spent the entire appointment crying, while the Dr. I’d entrusted with my medical care for all of those years, blankly stared at me! He  only muttered the words “I’m leaving, today’s my last day. I want to spend more time with my kids so I’m going to work at an Urgent care!” First of all, that was very “fishy” from the start! When he became a Dr., married and later had 2 kids; he knew what he’d signed up for! 

I left and had to pay a $30 co-pay to cry for 40 minutes! Most of that time was with the M.A. Consoling me as she reaffirmed that “nothing would change”! That Dr., his nurse & his MA, told me that “the other Dr. in that practice would take over my care & nothing would change”! My ex-Dr also told me that he’d “personally speak to my old pain Dr. & get him to sign the papers for the insurance co. Not to fear”! Secondly, he said that he’d forward my treatment plan and records to that PMD, and all would be fine, and everything would stay the same!

A few weeks later, I went to see my old pain Dr and he told me that he knew that “my pain was real and that I have multiple real and high pain issues”! But that I was to go to a “treatment center “! Then afterwards I could possibly see him again. But only after I went to his “friend”! He next explained to my husband and me, that “it wasn’t me; but he wanted no part of that other Dr.’s mess!”(my old GP). He explained that my old GP had been investigated by the Feds and had to go work at an Urgent care because he was fired from that practice  & unable to write “for pain meds”any longer! I was in tears crying and begging him to take me back! I cried and through my tears, I explained that “I had never even smoked cigarettes, did never do any kind of drugs and had not drank alcohol!” I promised him that “I was strong & I could get down off of the Fentanyl lollipops all by myself, with my husbands love and support! I made an appointment with him for 2-3 weeks later and I promised him that I’d wean down by myself. He allowed me to make the appointment! 

I returned to that PMD’s office 2-3 weeks later and down off of the Fentanyl lollipops by about 70%! He had a young 17 yr. old office girl come to tell me that “he still won’t see me unless or until I see his friend, the addiction specialist” (I researched & later found out this info.)! I cried and begged for help and I was afraid! 

I visited at least 5 Pain Management physicians! All of them looked at me like either  I was a “Lepar” or my case was too difficult and they did not want to bother ! Time was drawing near when I’d be totally out of those lollipops for good. Finally, the partner, actually the owner of the GP’s practice,(who’s known me and my family since the 1980’s), told me that I’d proven to him that I could go down on my own and he’d “take me on only if I was 100% off of the lollipops AND the oral meds &/or patches that I’d been prescribed”!  I promised that I could do it. I was terrified because no one had my best interest in their heart or mind! I had no way for future pain relief and the nation was going berserk over pain management Opioids!

What happened to this nation? Why am I suddenly categorized and scrutinized? Some movie stars and magazine reporters family members had died from over dosages; therefore now I’m an “addict”!?? There’s a big difference people!!! There’s a huge personality profile difference between an addict and someone who is dependent on Opioids for several nerve pain diseases and high pain diagnosed illnesses! An “addict” craves their “fix”! They live to take  medications, whereas, I take my medications to live! The addict gets a “high” from the Narcotics or Opioids.  I wouldn’t take them if they did not relieve my high amount of nerve pain due to RSD/CRPS and other pain illnesses from A to Z!

 I did finally find a good, kind and respectful Pain management physician. He did tell me that I had to discontinue the Fentanyl lollipops if I wanted him to be my Dr. He told me to take my last one on the eve of July 12, 2015. He gave me different Opioids and he was pleased that I’d gone down by myself, to 1/2 of the amount of Fentanyl patch than what Id been on under that first GP’s care.

I took my last Fentanyl lollipop on July 12, 2015. I had to go through withdrawals even though I’d decreased the lollipops by 90%! It was a horrible, awful and painful experience that I’d never wish on my worst enemy! I needed something for my blood pressure spikes! The nausea and vomiting too! I needed meds for calming me and I just needed time to get off of them 100%! I was in pain and miserable for a good 3 weeks, then down just a notch for 3 more. It’s was scary for my husband and a nightmare for me. I thank God that I’m a very strong willed person. I did it and I came out the other side! I NEVER want to go through that again!

I never want to be dismissed and sent to an opioid treatment center because….. I did it myself! I certainly didn’t want that following me around in my medical records for the rest of my life; when I never have never been and never will be an addict!! Yes, I’m still taking an oral Opioid and 1/2 of the amount of Fentanyl patch that Id been on under that GP’s care! 

I thought he cared about me as a long term patient! I thought he was kind and that he was the best Dr ever, because he “listened” to me! Well, do you know what? That’s all he did! He listened to me & then he wrote prescriptions and stared off into space with a kind look now & again. He never tried to help me by physically “doing” something for me–except lifting a pen!  He knew how much medication I was on! He knew it was a dangerously high amount of Opiods for someone like me; No…for anyone!!  He was not doing me any favors and he was digging me an early grave! He  didn’t care at all for my husband, daughters & granddaughters; my family or my life.

What happened when my ex-GP got in trouble and left, was a blessing in disguise. Yes, I had to go through a lot to get where I am today! I’m thankful that I have God in my life and that I’m a strong person. I thank God that I had my husband there by my side to help me through it all! I also thank God that I am here today and that I can tell my story. I only pray that my writing &  my story will help someone else in the future.

It’s because of Doctors like my ex- GP, Dr Bullach, who didn’t truly care about curing or attempting to fix medical problems and/or pain; but who only wrote prescriptions. Also then due to the actions of some celebrities like Prince, Michael Jackson and the others that abused medicines for pain; that we are in this situation today. Also the “regular non celebrity people” that abuse, modify & sell these opiods.  It is all of them who’ve ruined it for all of us. We are the faces of the people who are dedicated to getting well and trying to live some semblance of a life. All the while we are also struggling with the management of our high pain illnesses. We fight against labels and against those physicians involved in the group called “PROP (Physicians for Responsible Opioid Prescribing)”, and others in the medical profession who give us these labels!

Lastly, I need to say one more thing while Im on my “soapbox”. If someone who you loved died from an overdose, I send you my most sincere condolences. But because of your anger, loss and fear; please don’t take it out on the people who are diligent in taking these medications responsibly?! Please don’t pull the rug out from under my life, our lives because you are mourning. Maybe you feel that you must right a wrong!  Please everyone, do not put all of us into the same category as those who abuse illegal substances! Most importantly, if you are in a position of being a reporter or news writer or Television newscaster, please don’t abuse your privileges by using your job as a stage for fighting against your own personal demons!

-References: Emily’s story from U.S. Pain Foundation website at: USPainFoundation.org (originally from Rep-ap.com article: “Side effect of drug fight means some are left to suffer”)

-Feature photo is originally from: USPainFoundation.org


The USPainSummit 2016, An Experience To Remember


Photo Aug 12, 5 18 28 PMPhoto Aug 05, 8 08 19 PM (1)Photo Aug 08, 6 44 25 PMPhoto Aug 06, 11 08 50 AMPhoto Aug 04, 8 41 19 PMPhoto Aug 06, 11 49 02 AMPhoto Aug 05, 10 38 37 AM (1)Photo Aug 05, 6 22 53 PM (1)      We arrived at the University of New England in Biddeford, ME on Thursday evening, just as people were sitting down to dinner.  Due to some special health needs that I have, we had driven for 2 days to get there. It was during the final phase of our drive, that there was a terrible truck accident on the 495. Traffic was halted for 2 hours on both sides of the highway and people were getting out of their cars to see what going on. We turned on the Am radio to find out about the reason(s) for the fact that both sides of the freeway were cleared and stopped.  Then we saw a medical helicopter come and touch down on the other side to pick up hurt passengers and drivers possibly. We were praying with other drivers that the people would be all right. I was a bit worried about getting to UNE, but not as worried as I was for those poor people who were injured or worse. We were talking with other people who’d gotten out of their cars and we even prayed with them for the safety of those involved.

We finally were traveling again and arrived at the University safely. Instantly, I started looking for the friends that I’d longed to see for so many years. Frantically texting them, I was wondering where they were and what they were doing?  These girls and I had started group texting along the journey to keep our spirits up, take care of each other and keep tabs on our friends. Flora and others came to my rescue! They took my husband and me to the dining hall so that we would not miss dinner. I first found Christa, the one I call my “adopted daughter”. She has called me “Mama” for many years and we have become very close over time. Christa and Flora made sure that I had a place to sit with them as Heather came up and gave me a gentle yet wonderful hug. I got to meet Jaclyn, who I’d been excited to meet and get to know better. I was so happy to see all of them,  I could barely hold back the tears of excitement that the moment had finally arrived. I met Barbara, Crystal, Melanie and her mom, Laurie. I finally got to meet Casey, and then Paul and saw so many other familiar faces that I would get to know throughout this most awesome weekend. We went to the hospitality suite after dinner and that’s where we got checked in, and collected the shirts that USPain gave us to wear during each day of the Summit. There was a feeling of comaraderie like no other as I met each new person, whose names I mostly knew. All of these people were fighting their pain, to come together on this first night.  Most of us were running on Adrenalin & excitement after having traveled far and wide to arrive at this retreat. We then went to bed and tried to recover a bit before the weekend ahead.

Friday morning couldn’t come fast enough for me. We all arrived and were sat in a big theater/lecture room. First of all, I thought it was great that they gave us all water bottles in our USPain “bag of goodies” as we checked in. There was concern for us staying hydrated because water, coffee, lemonade and teas were readily available outside the lecture hall door. There was also a variety of fruits, cookies and some Nutri-grain bars. While walking in, you could see that this group was set up to “look out” for us and each other. The first day there was a couch to provide for the special needs of one of the chronic pain patients. Blankets were available to us because it was very chilly in the lecture hall.  After the first day, Paul Gileno, Casey and others made sure that more blankets were available.  Then additional couches, and chairs were brought in for others who also needed some extra comfort. This was done so that we could all be  able to stay and listen, rather than have to get up and rest someplace else. They saw a need and they took great care of us.

Up first, Paul Gileno spoke as he Welcomed us as a “family” and introduced himself. He spoke about his own journey with chronic pain.  Paul explained the meaning behind the color “blue” for the USPain Foundation and why he started it. We were waiting for some deep meaning behind the color, but Paul told us as he chuckled, that it was “just because he likes the color blue”. Next he was awarded a beautiful hand carved Cane with Blue accents on it. There are no words to describe the beauty of this cane; also the love and inspiration it took to create. I am in awe of the talent and Artistry of a fellow Chronic pain patient named “Ernie”. Paul said that the cane will be everywhere USPain Foundation goes, to remind everyone that #peoplewithpainmatter. I can’t remember everything that was said, but he said something about how people with pain are so creative and still useful persons in society with aspirations, talents and dreams. Either way I know he is very proud of that cane and he did positively say that it would be taken with him to every USPain function.

Next up was Shaina and she spoke of compassion and respect for each other. She explained that advocates need to continue to write letters to lawmakers.  She told us “take care of yourself first”;  and added that our caregivers support us and they also need support.  We need to work with and continue to network with fellow pain warriors.  We started after this, talking about “mind, body and spirit”….What we do to get our mind off of the pain?

Then another pain warrior came up to speak and it was Cindy Steinberg. She spoke about advocacy. She said that like Ghandi once said “We need to be the change we want to see in the world”. She explained that one way to make change is to be the changing force. Use Social Media, Public speaking, meetings, rallies, Television and public hearings. There have been successes in these kinds of advocacy outreaches. One of which is the Bill in Massachusetts regarding Opioids.  The Bill stated at first that persons with pain were “only allowed 3 days of Opioids no matter what!!!  “They pulled people together; groups rallied behind each other and they said “that’s nuts”! They got the Bill to have an “exception for Chronic pain, Cancer and Post Operative pain!” It was a victory in the corner of people suffering with chronic pain.  We next spoke about “Step Therapy” and that CT 2014 hurts patients. Step therapy is in my understanding, where you start at the bottom and they try everything cheap and you have to “fail” that in order to get to try something else that might cost insurers more money. Essentially it is used by insurers to control cost. Next Cindy spoke about the “National Pain Strategy”, it’s a comprehensive plan to help pain patients.

Next, Tiffany introduced our panel of 3 lovely women, that I could really relate to. These women were: Ellen, Juliana and Wendy.  They spoke about advocacy and “What makes for successful advocacy?” They went on to say “Why do you think your story is important? When you  speak say that, be authentic and keep it real. They said that in being an advocate, one good way to start a conversation is to start out by stating something that everyone has felt or is familiar with. You can start with saying “just imagine you wake up every day feeling like you have the flu”? The three of them also explained that advocates need to get the media to know us.  Other tips were:  “Tell your story because that’s how you make a personal connection. Your story does make a difference.  Along with helping others in pain, you are helping yourself”.  They went on to explain the best way to talk to a Senator or state Representative. “Let your story grab them, if not visible make them visible”. They coached us to write letters, explain and allow Dr.’s to know how we feel.

Next up was a representative from the Pfizer drug company, Barbara Phillips. She discussed how “Opioid prescriptions have tripled”. (*Side note:  In my opinion, the amount of Dr.’s treating chronic pain has gone up. The use of Opioids, I believe has risen due to the fact that more people seek treatment for chronic pain, the medications have low side effects and are more readily available; or they were before this pandemonium. For example in the 50’s and 60’s, the use of antibiotics went way up. It’s because they were more readily available to help people.  We are getting “lumped together” with people who are “addicted” and not medically dependent on the Opioids for relief of chronic pain). Ms. Phillips says that the education regarding chronic pain, for Primary care Dr’s is almost non existent. The Medical Dr.s only get approximately 9 hours of education and training with helping chronic pain. But the Canadian Veterinary Dr’s get a whopping 87 hours of training with chronic pain for animals. She explained chronic pain as being “the 5th vital sign”. She talked about the differences between acute and chronic pain and said that PCP’s don’t understand chronic pain.

Later, Ms. Phillips went on to discuss the different kinds of pain, which are: Nociceptive Pain (bone fractures, sprains, burns, bumps and infectious or arthritic disorders), Neuropathic Pain (Post shingles nerve pain, RSD/CRPS/Causalgia, cancer pain, phantom limb pain and Peripheral Neuropathy, which is widespread nerve pain such as Diabetics live with).  Then there is a third type of pain called “Mixed Pain”, which is similar to Fibromyalgia etc. She says that assessing and managing pain is easier after identifying which kind of pain you have. She talked about why she feels that “Opioids are over prescribed”. Ms. Phillips believes that Opioids were an “easy script for Dr.’s to write, and they underestimated the risk to patients taking them”.  It is difficult to asses patient risk (use, misuse, diversion). In Misuse she explains that she meant “taking more than the prescribed amount”. In Abuse, she referred to “using it only for euphoria” and by Diversion, she explains “removing the Opioids by sharing of them with family members etc.” She also talked a bit about Abuse deterrent Opioids with the agonist/antagonist approach; and there was some educational information regarding Opioid use. She ended with her fact “that 50-80% of Opioid deaths come from chronic pain”.

After Barbara Phillips from Pfizer was finished speaking, we got to meet Senator Hill from Maine. She was delightful in that she got my attention and my admiration right away when she spoke of her love for animals. I love animals and feel the same way, so it got to my heart right away. Sen. Hill discussed the importance of advocacy and how its “scary” to campaign and go to the Capitol. She said that while legislators are “scary”, they’re just “regular people”.  We need to “get up front, don’t be afraid to talk and go tell your story”. She also said that if you are “up against the clock, have your testimony in writing”. In giving us some good advice, she told us that they prefer to have the testimonies be about one page. Make bullet points and try not to or DON’T say the same things as others have said! They want to hear true, real, honest stories. She stressed that we should try really hard not to repeat. I’m talking about if you are going to lobby, you should be a real person and tell your real story; push the point.

Some people got up and asked questions and spoke out. The chronic pain patients said “What do we do to teach lawmakers about the importance of Opioids when needed?” In my opinion, they are all right to be used sometimes. She said she would want to hear “how we really need it but give suggestions on how we’d not allow others to misuse it.  Come and tell her how it helps you but how to regulate it for those who misuse it.” I am thinking, why is it up to the chronic pain patient to figure out how to make other persons not misuse the Opiods? We talked about “splitting it into two issues”.  It’s not only one issue and we are being put in the same group together with those who are abusing the medications. Senator Hills’ eyes became widened and she spoke out and said “Nobody’s ever said that before”, and we do need to split it into two groups! I’m saying that we aren’t “addicted” but physically dependent! We don’t get a “high” from the Opioids. If you ask 99% of the chronic pain patients, we will tell you that we do NOT want to take this medication. We wish that we did not need it to help with our pain. But the fact remains, that it DOES help some of us! She instructed us to meet in and start with our own districts’ Health and Human services community. Her information was very invaluable in that she gave bullet points to us in how to be a better advocate. Here are a few of them:

  • Pick an issue and narrow it down….prepare and build from that!
  • Go to your own house and federal people in your own state
  • ADVOCACY:  step #1 is to impact change- know your basics and bullet points (know the different parts of the govt. such as: the local and state and then the federal government; which is: Legislative, executive and judicial
  • Congress is responsible for passing legislation. Each state has 2 senators and you should get acquainted with them. You can visit: congress.org and house.gov or senate.gov
  • Take advantage of short meetings.  Be ready and be direct! For example: go to candidate meetings, town meetings.  Call and make yourself available and use Social Media whenever possible

Then after Senator Hill was finished, Shaina came back up and told us to learn about issues on USPainfoundation.org. Take what you know and what you have learned and try to make a difference.  Share your story in that you can write a letter to the editor of your town’s Newspaper (to go to the correct person, look on UsPain.org). Shaina made us all laugh and giggle when she told us that “she wants to help” and it’s OK to “bug her”!

After lunch, we came back to an afternoon discussing “how to tell your story”.    We must remember that so many of us, those with chronic pain can still do some beautiful and productive things. For example there were people there who’d made beautiful jewelry, and how about that gorgeous hand carved cane that Ernie gave to Paul at the beginning? We do have something to give!  Also as far as getting our story out there, it was reiterated that when Public speaking to lawmakers or while testifying; write down short ideas ahead of time. You don’t need to memorize because they want to hear from your heart. You usually only have about 2 minutes to talk, so make sure you know what the US Pain foundation is, and bring copies with you. Did you know that US Pain foundation has 100,000 members?  Get resources from US Pain Foundation and “BUG” Shaina! LOL….

Regarding the Federal government, for example the FDA, you’ll have a more “polished” audience and only 2 minutes to speak. You’ll get a warning sound when your time is almost up and then they just cut you off! You need to have paper and write down what you want to say.  Get it down to 2 minutes! Your story is very important!! If you do use facts, please make sure they are correct, accurate. Regarding the State government, you’re testifying in a less formal manner. You’ll more or less be in front of a committee.  Keep eye contact, keep to your personal story and your bullet points! Try to explain your disability and always arrive early when you testify.

After all of these discussions were finished, we heard from Dr. Edward Bilsky, a professor at University of New England.  He had a Pharmacological approach and a scientists approach to the Opioid misuse. He was in agreement and supports the National Pain strategy.  He discussed that he feels that “Opioids don’t help chronic pain”. In talking about some of the Abuse deterrent drugs, he said that “Naltrexone stops cravings”. He feels that “the problem is not one of  addiction so much as it is of a misuse issue.” He went on to say that 2.5 million Americans meet the criteria for Opioid misuse. He called Opioids, “Heroin”.  I really admired Dr. Bilsky and he made some very good points. He’s a very intelligent professor and I got the impression that he was a “family man” and “trying to help”.  But I must give my opinion here, right? This is my blog and I have a right to my opinion in a respectful manner. My opinion is that Opioids have helped me over the past 14 years. I’ve actually gone down in my amount of medications, because I wanted to partly, and then because I was forced to later on. The medications do lessen my pain, though as my Pain Management physician says, “he cannot take the pain away, but only help to make is less”. I don’t feel that Opioids are “Heroin”. I feel that my Opioids, lessen my pain and I have never “craved” them. If someone asked me, I would tell them that I do NOT want to take this medicine. I have done all that has been asked of me and not much has helped my multiple, real pain issues and diagnosis’.

The part that was the most fun, was Friday night. We had a Lobster bake out by the beach and the ocean! It was an awesome sight and the man cooking the lobsters opened up the foil coverings to show me the display of many many lobsters cooking over a fire grill! We ate together with 50 other US Pain Foundation ambassadors from across the country. People were laughing, having fun and taking lots of photos.  Dr Bilsky was there and was a part of it all with us. I did not have to agree with all that he said, because I look up to him as a Mentor who knows different things about this than I do. I can only say what is in my heart and my head, and how I feel. I think he would respect that too.

We went down towards the beach after eating Lobster, corn on the cob, potatoes and some wonderful strawberry shortcake for dessert (with real whipped cream on top!).  My husband, my friends and I laughed, talked, cried and took action shots.  We pretended to be “US Pain Angel’s” in parody with “Charlies’ Angels” (*well, not my husband….LOL, he took the photos). It was good for our hearts, minds and souls; to be around people whom we have known for so many years, but never have had the chance to meet in person. I felt a quote from the “Grinch” book come to mind in that “my heart grew 3 sizes” that night. My heart did grow on this trip. I felt love, friendship and comradeship with these people who were like me in so many ways.  We may be from different sides of the Country, but we all took care of each other and watched out for each other. We made lasting friendships with the new persons that we met. It was an awesome sight to see people exchanging social media names with each other, phone numbers and contact info.

Day #2 of the pain Summit was about getting people to sign and support the Ntl. Pain Strategy. Cindy Steinberg spoke about this and then spoke about CARA- comprehensive addiction and recovery act of 2016.  We learned about the Federal Pain Research Strategy- a systemic plan for future pain research.  We found out that if you want to learn more about this “Non medical switching”, you can watch You Tube videos about it.  Research shows that Non medical switching leads to worsening side effects and conditions.  When the insurance payers just decide to switch medicine on people, it’s usually without the knowledge of the persons attending physician! There are 42% more E.R. visits with a 12% higher rate of outpatient visits as well. Shaina was explaining that “Biosimilars can have bad side effects versus Biomedics”.  They want to give us cheaper and less effective drugs. “They” meaning insurance companies.  We need to speak out and restrict “Biosimilar drugs”

We discussed “Step therapy” and how it is terrible for 67% of patients. They end up waiting for help as they get more sick and go through withdrawals sometimes. There is a recent article in the American Journal of Medicine about “Step Therapy”.  Then we moved on to “Abuse deterrent therapies”. It is an interesting new technology, in that the drug companies make the medications impossible to crush, chew or melt; in order to get a “high”.  This also deters people from using it for the wrong reasons or selling it on the streets. A place to get information is: WWW.Painconnection.org and their phone number is: 1-800-920-0664.  Their FAX # is:  1-800-910-6951.

At the end of the day, we got some useful information on Bill tracking/legislative tracking.  We use this to find legislation on a certain issue; to learn about and track it.  You can visit WWW.uspainfoundation.org, and go to “Bill Tracking” and track by state and /or by issue.  The top right corner of the page tell us how many bills are going through right now.  You can go there to find the Bill title, Bill sponsor and the status of the Bill.

As you can probably see, by the second day, I was in more pain and could not focus quite as much. I tried to take notes as best I could. I was so impressed by the actions of Paul, Casey, Shaina and whoever else helped us.  Many of us, the pain patients who were in attendance, were very cold and very much suffering with a lot of pain, due to the extra traveling, unfamiliar surroundings for sleeping and having to be up and listening intently for such long periods of time. I know for myself, I’m on Disability and just not able to do things for very long periods of time.  They took the time to listen to us and got more blankets.  They brought in extra couches & chairs to give more people a place to rest and still take part in the conference.

All it takes is a kind gesture from someone else sometimes to make us feel cared about, and our pain acknowledged.  Just the fact that someone notices our needs or takes care of our wants  at times, really makes us feel good or at least better, even if it is feeling better inside of our own skin. There was a time during the conference when I was starting to fade. I was not feeling good and my pain was higher than usual.  I was so grateful to Paul, Casey, Shaina and the others who got the extra chairs etc., so that I could spread out a bit. At one point, Casey was in front of the room and she looked over at me. She could tell that I was not feeling very good. Mostly, you can see it my face when my skin turns more pale and I stop being the animated person that I usually am. Casey gave me a certain nod and smile; a glance to let me know that she knew and she cared. It meant the world to me!  Then Christa,(my “adopted daughter ” all of these years, whom I finally got to meet at this conference) who was sitting next to me in another chair with her legs also up on a different chair, took hold of my hand.  It was a feeling of friendship and deep feelings that one can only share with someone else who truly understands.  Then my husband and caregiver, Craig took my hand and I felt a rush of relief go through my body knowing that I had someone there with me who was in this with me for the long haul. As Ellen, another chronic pain patient, told me “we are lucky that we know a true connection and deep love, that others don’t get that lucky to experience”. I felt it again when Craig stood up to speak about care giving, after Stu had done such  a great speech on it. My husband got up in front of 50 Ambassadors, many other care givers and the administration of the US Pain Foundation, and professed his love for me. He spoke of how it is for him, on the other side feeling helpless sometimes. How he can only be there for me and how he “loves me so much”. It made me tear up and a rush of emotions ran through me as someone handed me a tissue.

That night we had a campfire, made S’mores and got to hang out with the neatest 13 year old boy I’ve ever met. He was “Ty” and he was the best.  How many 13 year old boys, would get up and get things so many times for all of these different people with pain? Ty did that and more. He brought me more soda and more cookies! He made me laugh at the fire pit and cry when I heard his mom read off all of his accomplishments to help children with pain. What a neat kid and one that any parent would be so proud to have.  I know that Casey is very proud of him. I am proud to know him and I know where he gets his strength and tenacity, we all do. I could see it in their interaction together, the mother/son bond is strong. Casey is someone who I was excited to meet and who became a close friend that weekend.

So many people that I felt a bond with that weekend. For about 54 hours, I had the pleasure of feeling a closeness in knowing that no one judged me and we all stood up for and looked out for each other. Nobody was left out and when I wanted to do a meaningful song in sign language, they found a way to let me do it in the hospitality suite on Saturday night.  The employee that was giving us soda and other drinks, had a blue tooth speaker. She hooked my iphone6 up to it and my song suddenly was loud enough for everyone to hear.  I used to be an Interpreter for the Deaf. Now, due to a MVA in 2002, I am Hearing impaired and have 2 hearing aids.  I don’t need to hear the words with the song together, because I learn the lyrics first and try to go with the music.  I got to do my “thing” that I CAN do. I am no longer able to Interpret, but I can do some artistic interpreting for a short period of time. I signed an ASL cover of the song “Stand in the Light” by Jordan Smith from the “Voice”. Sure, the music stopped a few times and it wasn’t perfect, but nobody cared. I got a round of applause and people told me it was “beautiful”. It made me feel so good. I remember, April came up and suggested that it be “the song” for the US Pain Foundation. How cool is that? I got to “do my thing”, but it was not for me alone; I wanted to give a “gift” to these people, these special friends that I had gotten to meet. To show my love for them and to express that we should still “be who we are, be true to ourselves; to stand in the light and be seen as we are”.

Thank you US Pain Foundation, for a beautiful, wonderful and memorable weekend. I got to make so many new friends and more whom I wish to get to know better. Craig and I made good friends with another couple who we felt bonded with, Stu and Ellen. I can’t wait for next year and I hope to be behind the scenes helping more, because I would love to be able to do more for those who are doing so much for us…thank you Paul,Casey, Shaina, Nicole, Lori and everyone at US Pain and everyone who was there…thank you so much!Photo Aug 04, 9 23 36 PM

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Lifeboat Act Will Drown Those Who Live With Chronic Pain


Hello Luvs,
There’s a new proposed tax by Senator Joe Manchin from W. Virginia & 6 other Democratic Senators! They’re being supported by Hillary Clinton! This tax is called “The Budgeting for Opioid Addiction Treatment Act”. It is also known as “The Lifeboat Act”! It’s no “lifeboat” for anyone except for the big addiction treatment centers who stand to make millions of dollars yearly!

These Senators want to make the chronically ill and those persons suffering with the highest amount of pain, pay for addicts to get help for their addictions! Why on earth should pain patients have to pay for anyone to get treatment, while they’re struggling with medical bills as it is??

Would it be OK then, to force people taking anti-depressants to pay for an eating disorder treatment center because some of them possibly also have an E.D.? Should Insulin dependent Diabetics pay for new Dialysis centers ? Then what next? 

It’s not good, fair or proper to force a tax & punish innocent people who are already struggling & suffering! It’s about as ridiculous as that “Device Tax” that Pres. Obama had proposed last year that got shot down, luckily before it ever started!

When will “they”get it through their heads that pain patients who suffer with chronic pain day after day, are NOT addicted to their Opioid pain medications!!?? They do not get any type of a “high” from these meds. Suppose these Senators took the time to ask anyone suffering from debilitating pain, if they like these medications; they’d find that the answer is “No”!

Chronic pain patients are not  addicts! An addict doesn’t just depend on their Opioids, but they crave it, obsessively think about it and seek it out for stockpiling! The difference again is that persons in pain, daily chronic pain; don’t want to take it and they don’t think about it. Their bodies may be physically dependent on the Opioids, but their brains couldn’t despise them more! But don’t misunderstand me please! The pain patient is grateful for this medication that will give them relief! Also please note that relief is very different from a high!

This proposed tax is ludicrous and just crazy!  It will increase the suffering of those who already suffer every single day of their lives!! I have noticed that many persons who’ve lost someone that they love due to an overdose; are supporting this proposed tax! I have lost someone I cared about due to an overdose! Though I’d never dream of punishing others because of my inner pain! Chronic pain patients did not kill my friend years ago! My friend didn’t act responsibly, took more pills than what was prescribed for her and killed herself by accident! 

Don’t punish chronic pain patients, cancer patients, persons with MS, RA, Degenerative Disc Disease, failed back syndrome, Complex Regional Pain Syndrome, Arnold Chiari Malformation and /or many other illnesses that can cause sometimes unbearable daily pain! It’s not American! It’s not right or fair and it will not help anyone except for the Government and the addiction treatment centers!

Please go to my Facebook page called “People In Pain Unite” to get more information on this Proposed tax. Please place “#peopleinpainunite” on everything that you write or post against this tax or against the “Lifeboat Act”! Please help us by writing to your Senators and the Senators listed on my Facebook page called  “People In Pain Unite”! Write letters to your  Governors, and even to President Obama.  Please watch my videoes below, to get a few minutes of information regarding this “Budgeting for Opioid Addiction Treatment Act”! See how YOU CAN HELP US!!  Help us STOP THIS ACT/TAX before it even begins!! Lastly, please SHARE and contine to share this post, my Facebook page and these videos!

Thank you so much for your time! Lastly, please sign the petition named in the photo below. Go to that website and sign this petition to STOP this “Lifeboat Tax”!