Living With Invisible Illnesses


 Showcasing what many of us live with and deal with on a daily basis:

Preventable Suicide Crime Scene


Someone help this woman! This is a crime! They treat animals better than people so what’s wrong with this picture? This must stop! People are committing suicide because they’re being denied pain medications! Please watch this short video and it will open your eyes to the TRUE OPIOID crises going on in the United Stated of America! Someone please help this woman and the other 100 million chronic pain patients who are in agony now bcz of what’s being misunderstood as addiction, hyperalgesia and worse! This lack of opioid pain medication to true legitimate chronic pain patients, has to stop! We are not disposables! We are in agony and we are human beings with rights like every living soul! Please learn about the difference between dependence and addiction! Addiction is a non-stop ruminating, craving and a need to get high from taking some kind of medication or drug! People with Chronic pain get “addicted” 1% of the time, due to pain medication! We are “dependent” NOT addicted! Our bodies will go through a physical withdrawal when the meds are taken away! But we do not WANT to need the pain medications. We do NOT get high or euphoric from the opioids! We get to live some semblance of a life outside of a hospital or a bed in our homes! Please help because too many people have died already! Stop being hysterical and blaming real and legitimate pain patients because someone you know died from an overdose! I’m so sorry for you, but don’t punish everyone because you’re in misery! Find compassion in your heart and watch this woman’s story for about 3-4 minutes! Thank you!

Thank

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.

 

 

 

 

 

Why I Wish To Be An Ambassador for U.S. Pain Foundation? My Pain Journey…


 

**I RECEIVED THIS RESOLUTION FROM MY TOWN OF CANTON, MICHIGAN,  FOR “PAIN AWARENESS MONTH” -SEPTEMBER 2016

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***I RECEIVED THIS PROCLAMATION FROM THE GOVERNOR OF MICHIGAN, RICK SNYDER FOR “RSDS/CRPS AWARENESS MONTH -NOVEMBER 2016 AND COLOR THE WORLD ORANGE DAY FOR NOVEMBER 7, 2016”

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One Bloggers’ Reaction To An Attack On Pain Patients!


Continue reading “One Bloggers’ Reaction To An Attack On Pain Patients!”

A short 2 minute video letter to CNN 


Hello Luvs,

Here is something that some of you had been asking me for..LOL..you had asked me to make a shorter video that you could watch and share to spread the word that #peoplewithpain matter and #painedlivesmatter and we are #chronicpainpatientsnotaddicts….here is a short 2 minute video…I hope you like it:

 

 

People With Pain Matter


People With Pain Matter! This Video is about my Chronic pain, CRPS Story & other Info. As well! A plea re: Opioids and correct information regarding subject also! #peoplewithpainmatter #painedlivesmatter #KeephopealiveforCRPS ….Opioids don’t kill people!~ People Kill themselves when they take Opioids with alchohol and illicit drugs like Heroin. Pain Patients control their medications and not the other way around as in drug addicts. Statistics prove that most overdose deaths are not reported correctly to the public. Chronic pain patients are “lumped together” with drug addicts and we are NOT!