Forest Is One Tree That Will Not Fall Without Being Heard!


Hello Luvs,

I just wanted to get something up today that would let many more people know & learn about Dr. Forest Tennant. I want everyone to know what is happening to this good man; this awesome wonderful doctor and friend of mine. I’m working on my own blog post but I wanted this up so that you could learn quickly and start helping. I want you to learn about Dr. Tennant and what he does for people. He helps the sickest of the sick. He helps people that other doctors don’t want to be bothered with; they just want to throw them away! Dr. Tennant is a good man and he doesn’t deserve what is happening to him. What’s happening now, is like what we think might happen in some Third World country!! Our country is changing for the worse! This isn’t the USA I ever remember and loved! What’s happening is fear mongering, craziness, bullying, and who knows what else?

Dr. Jeffrey Fudin, is a very close friend of Dr. Forest Tennant. I asked him if I could re-post this story from his blog today. He gave me permission to do so. I need to make sure you know that I did not write this piece. It is totally all Dr. Fudin’s writing & work here today except for this introduction. Please visit his blog @Paindr.com :

**(Copied with permission from Dr Jeffry Fudin, B.S., Pharm.D., FCCP, FASHP)

Diplomate, American Academy of Pain Management

#DropTheTennantCase

Forest is one tree that will not fall without being heard:

I was shocked to learn of the Gestapo tactics the DEA organized in the attack against Dr. Forest Tennant.  What kind of world do we live in? I am not at all surprised however to see the outrage amongst my peers to rise up in support of Dr. Tennant’s well-mannered and careful dedication to his patients. When asked an open-ended question by a prominent professional group regarding this mockery, my first response was, “Perhaps the DEA did the world a favor – this time they screwed with the wrong person and their bungling actions will reverberate pervasively.” I suspect almost every leading pain clinician scholar will line up to offer expert witness services in support of Dr. Tennant should the DEA contemptuous actions against Dr. Tennant ever make it to court.

If anybody Tweets, posts, or shares any comment on social media, please include this hashtag, #DropTheTennantCase.

In the last few hours we already see two posts, The DEA Raids the Offices of My Friend and Colleague, Dr. Tennant and DEA Raids Dr. Forest Tennant’s Pain Clinic. Keep them coming and be sure to add #DropTheTennantCase.

Dr. Morty Fein was kind enough to provide some backdrop and clever insight to the alternative news associated with the DEA raid on Dr. Tennant and the patients the patients and community that will be harmed as a result.

Here’s what he had to say in his piece entitled,

The Fifth Vital ….Sigh

When there is regime change there is often a purge of anything and everything associated with the prior (often disgraced) movement and its rulers. History gets rewritten and we move on to a new and improved world. In pain politics, the opiophiles have been replaced by the opiophobes in power and every remnant of prior rule, every concept and tenet ends up getting dragged through the mud and discarded. Sigh.

Witness what has happened to the notion of pseudoaddiction. It has been ridiculed without a critical look at its continued importance. Because an executive from a company accused (often correctly but just as often overzealously) of overzealous marketing of opioids wrote an “n of 1 paper” based on a sincere and accurate appraisal of a troubling observation during his early years of pain practice – many years before he left practice and became an executive – the notion has been tied to overpromotion of opioids in the media and by opiophobes. Never mind the fact that the notion is even more important now since the stingy approach to opioid availability is daily leading to even worse pain control for millions and in turn causing desperation. And desperation can lead to people acting in ways that are uncharacteristic of them and their behavior construed as a sign of addiction. Happens every day. Often. Several authors, including the original authors, have over the years written about the need to re-evaluate the concept; not the validity of the observation but in what clinicians need to do to safely respond to it. The answer is not the knee jerk raising of opioid doses that became a bit of a caricature during the early days of the opiophile revolution, but a reappraisal of the totality of the patient’s pain regimen and approach and a sincere respect for the fact that a person taking liberties with their opioids or augmenting with anything including street drugs can indeed trigger a behavioral loss of control that needs to be addressed and not solely relying on improved analgesia to stop the behavior. Loss of control and uncontrolled pain are not mutually exclusive. Regardless of what drives the drug taking behavior and loss of control, abuse and even overdose can result. Perhaps this is why lowering MSEs nationally is not decreasing the number of opioid overdoses and in fact they are increasing them. The notion is self-effacing for us HCPs – that it is our failure to control pain that can drive the desperation and we have the responsibility to help fix it and the behavioral syndrome accompanying it – if anyone has the time and reimbursement anymore in our healthcare system for this much soul-searching and critical thought. Sigh.

And of course, the pain as the 5th vital sign movement has also been ridiculed as a simple ploy by pharma to lead to more pain assessment solely because it would lead to the more opioid prescribing not to simply bring pain and suffering out of the shadows and raise awareness. Outrageous and laughable contend the opiophobes. That people suffer in silence, that they are afraid to tell their health care providers, that unless they are asked they will often assume that discussion of their pain is not the purview of the providers with whom they are interacting is a trite every day observation doesn’t prevent throwing the baby out with the bathwater. Pain as a 5th vital sign is a movement about communication not treatment. Let us not go back to the bad old days of don’t ask don’t tell about pain and suffering. Want to change the name of it? Fine. But we shouldn’t stop efforts to ask about our patients’ experiences of suffering. We should avoid knee jerk reactions driving what we are going to do about it. Simply because someone reports their pain as “8 out of 10” doesn’t mean we should knee jerk raise their opioid dose nor should we knee jerk increase the frequency of their meditation sessions. It requires time and thought and a self-effacing attitude that we can do better for the person and a commitment to do better for the person. If anyone has the time and reimbursement anymore in our healthcare system for this much soul-searching and critical thought. Sigh.

And while we are on the subject of regime change, some of the most expert, most ethical and most erudite former leaders in the opioid movement are being dragged through the mud and the legal system on virtually a daily basis nationwide, tormented by district attorneys and ambulance chasers who would beg any one of them to care for them or their family members if they were stricken with severe and unrelenting chronic pain. Virtually everything they ever wrote, said or did being misportayed and  misrepresented as they get held responsible for consequences of treatments that occurred in jurisdictions they never set foot in. As if writing or talking or doing everything they could for opioid safety was just a ploy for pharma to push more drugs. No, it was a move to try to help others if they were going to do opioid therapy to adopt a seriousness and responsibility and acquire expertise like their own. They may have overestimated the integrity of their peers that went on to run pill mills but they never advocated for pill mills. They may have underestimated the size of the gap between their own expertise and that of their brethren that would try to emulate them. But they never advocated for carelessness or lack of responsibility. They wanted us all to take a self-effacing (i.e. that we all need to learn more about pain) and responsible and thoughtful approach. As if anyone has the time and reimbursement anymore in our healthcare system for this much soul-searching and critical thought. Sigh.

This brings me to the raiding of the home and practice of the beloved and venerated Dr. Forest Tennant. His Thanksgiving gift was a storm trooper’s boot in his door – by a cop who has a better sense of what the doctor’s patients need than the doctor (with 50 years plus of experience) does. And who I am certain would beg Dr. Tennant to care for him and his family if they were stricken with unrelenting chronic pain.  Dr. Tennant called them and their scare tactics out in an interview right after the events and he intends to fight. Be Brave! Don’t run Forest, don’t run!

Free the Opioid 5 I say.

It is time to stand and fight. Regime change and the re-writing of history must stop now. Our support for these 5 is vital. Sigh.

This is taken with permission, from the Blog of Dr. Jeffry Fudin @paindr.com and here’s the link: http://paindr.com/forest-is-one-tree-that-will-not-fall-without-being-heard/

Here’s some information about Dr Fudin. This information was taken directly from his own website/Blog , also at paindr.com…. I didn’t want to get anything wrong and so this too, is directly copied from his Blog. All rights are reserved by him and everything here today is all his work and his writing and not mine! Please read about Dr Fudin:

Jeffrey Fudin, B.S., Pharm.D., FCCP, FASHP

Diplomate, American Academy of Pain Management

Founder & Chair, PROMPT (Professionals for Rational Opioid Monitoring & Pharmacotherapy)

Owner & Managing Editor, PainDr.com

Director, Scientific and Clinical Affairs, REMITIGATE, LLC in Delmar NY

Director PGY2 Pain Residency Stratton VA Medical Center in Albany NY

Adjunct Associate Professor, Western New England University College of Pharmacy

Adjunct Assistant Professor of Pharmacy Practice, University of Connecticut School of Pharmacy

Section Editor, Pain Medicine

Dr. Fudin graduated from Albany College of Pharmacy & Health Sciences with his Bachelors Degree and Pharm.D. He completed an Oncology/Hematology fellowship at SUNY/Upstate Medical Center.  He is a Diplomate to the American Academy of Pain Management and a Fellow of both the American College of Clinical Pharmacy and the American Society of Health-system Pharmacists.

Dr. Fudin is a Section Editor for Pain Medicine, Founder/Chairman of Professionals for Rational Opioid Monitoring & Pharmacotherapy, and peer reviewer for several professional journals.   He has participated in developing practice guidelines for use of opioids in chronic noncancer pain (APS, AAPM collaborative) and participated in national and international guideline development for arthritis, fibromyalgia, and palliative Care. He has also participated in the development and co-author guidelines for the treatment of opioid-induced constipation. He is consultant to a national panel to develop consensus guidelines for the proper use of urine testing in addiction medicine, a collaborative effort with the National Association of Addiction Treatment Providers (NAATP), Center for Lawful Access and Abuse Deterrence (CLAAD), and the American Society of Addiction Medicine (ASAM). And he is a panel member for new urine test guidelines under development by the American Academy of Pain Medicine.

Dr. Fudin is President and Director for Scientific and Clinical Affairs for REMITIGATE, LLC, a software development company specializing in opioid safety. He practices as a Clinical Pharmacy Specialist and Director, PGY-2 Pharmacy Pain Residency Programs at the Stratton Veterans Administration Medical Center in Albany NY.  He holds adjunct faculty positions at University of Connecticut School of Pharmacy, Western New England University College of Pharmacy in Springfield MA, and Albany College of Pharmacy & Health Sciences.  Dr. Fudin has been an invited speaker on pain management nationally and internationally.

Dr. Fudin is founder and Chair of Professionals for Rational Opioid Monitoring and Pharmacotherapy (PROMPT), owner and managing editor for paindr.com and founder of Remitigate LLC, a software development company that has launched an application to help clinicians interpret urine drugs screens with several pipeline products including a pharmacogenetic applications and other opioid safety software initiatives.  He is a prolific lecturer, writer, and researcher on pain management topics and he served as a Task Force member for the Board of Pharmacy Specialties (BPS) for role delineation study/practice analysis of pain and palliative care pharmacy. He was awarded the American Academy of Pain Medicine’s Presidential Commendation in 2014, in recognition as “a voice for scientific integrity and an advocate for people in pain.”

Never Judge By Outward Appearances 




During this September 2017, we have been urged by the U.S. Pain Foundation, to share our story on social media.  I was reluctant to do this, but then I decided to share after a mini documentary that my husband & I were involved in was released.  Let me explain:

I was recently involved in a video on Social media, called “Becoming Incurable”, directed & produced by Victoria Suan.  I’ve had several people see that video, which shows only a minuscule piece, of one very small illness that I live with.  People saw me with a nebulizer and now think I have only Asthma.  Asthma isn’t fun even on its own. But between this and seeing me involved with the U.S. Pain Foundation during Pain Awareness Month especially;  many people are assuming things that shouldn’t be assumed.  None of us like being assessed by what we look like on the outside; with regards to Invisible illnesses.  Several persons have told me that they “wish they only had what I have”.  Others have said that “they wish they could do more & be involved more, like I am able to do “. 

My name is Suzanne and I have been disabled since 1999; 1st from PTSD and stage two chronic Kidney disease. In August 2002, I was in a motor vehicle accident which caused multiple injuries,including:   a Traumatic brain injury, hearing loss (I acquired 2 hearing aids), vision lessened & eye issues, many (approximately 8) surgeries, & 3 years of TBI rehab. I still suffer with short term memory loss and other effects from the TBI.  In 2003, I had to have a dual chamber pacemaker placed for “Sick Sinus Syndrome”  (it is a Bradycardia/Tachycardia Arrythmia), along with Dysautonomia/POTS.  After seven or eight surgeries and a pacemaker, I was diagnosed with” Complex Regional
Pain Syndrome”, in 2007. It started in my right foot after surgery and it spread over the years to both feet & knees.

 In 2005, I had an M. I. or heart attack. In 2006 after the heart attack, I was diagnosed with Atrial fibrillation and was put on Blood thinners. But, I suffered a CVA/stroke in 2006. I have Mitral valve prolapse, Tricuspid valve prolapse, mild Pulmonary Valve Hypertension, 

In 2013, I had to have pacemaker replacement surgery (my first pacemaker was placed in 2003). When the Heart Surgeon got inside of my chest, they found that the entire pectoral muscle had to be totally rebuilt. The old pacemaker had been placed in the muscle instead of inside of a bag near the muscle. Over 10 years, It wore a hole right through my pectoral muscle and then had to be rebuilt during a long surgery, which was a very painful recovery afterwards. The Dr. informed me that aside from the Systemic CRPS, the continuing post surgical pain and Lymphedema in my left arm, is similar to the pain that occurs after a mastectomy.  Though, I did not have a Mastectomy.  

 The surgeon, a Neurocardiologist, had researched RSD/CRPS & did an internal surgical wash of Bipvucaine to try and “head off”systemic CRPS, & prevent it from spreading. It ended up being unsuccessful and the CRPS progressed into “Severe, Systemic/Full body CRPS”. It’s spread everywhere including my eyes and my mouth.  

 I have a few other chronic pain illnesses, including: CKDII, Arnold Chiari Malformation I (with Chiari Migraines),
Degenerative Disc Disease, RA, OA, Gastroparesis, S.I.B.O., Chronic Erosive Gastritis, Autonomic Neuropathy, Polyneuropathy in Collagen Vascular Disease (EDS-4/vascular), multiple herniated & bulging discs (with L4-5 Radiculopathy) at L4,L5& S1 + C5,C6 & C7. CID (Combined Immunodeficiency Disease/an Autoimmune disease), Eczema, Prinzmetal Angina (aka “Coronary Spasms”), Lymphedema, Scoliosis, Asthma, CAD, Right Long Thoracic Nerve Neuropathy, Severe Dry Eye, and just too much to mention here today! But you get the idea!  

I’m not the only one! There are so many chronic pain warriors with a list as long or longer!  I’m not a candidate for a Spinal cord Stimulator or an Intrathecal pain pump, because of my “Combined Immune Deficiency Disease”. It could cause paralysis and/or infection in my Spinal cord. So I’m limited in what I can do for my chronic pain. I’m one in a group of chronic pain patients, who has had to resort to taking pain medications. But in doing this, I can have some semblance of a life outside of my bed or the sofa. Believe me, since 2002, I’ve tried many, many medications starting with Lyrica & Gabapentin. I went through 8 years of physical therapy. I had to go to TBI rehabilitation for 3 years. I’ve had many braces, therapies, tests, TENS unit (prior to the CRPS) and more! Depending on the day & how much I need to do; I have:  hand braces, arm sleeve covers, 2 knee braces,     2 AFO’s, a wheelchair, Motorized scooter, walker and a cane. Right now the pain medications are what give me the ability to do some activities outside of my home, bed or sofa.  

 This is my story…. it’s  the “Readers Digest” short version.. It’s a long arduous and continuing saga of chronic pain and surgeries. But I just don’t give up HOPE. I make it a Verb and try to change negatives
into positives. Rather than do nothing, I try to do something. For fun, I make You Tube Videos of my favorite songs or stories translated into American Sign Language (@ASLSuzyQ).

 I’m an Ambassador for the U.S. Pain Foundation. I write in my blog, “Tears of Truth” @tearsoftruth.com. I am a writer
for the National Pain Report.  I also founded & run a few support groups for chronic pain & RSD/CRPS.  I’m also a chemo-angel. I am part of a collaboration group to help with the Opioid crisis (the crisis being the lack of Opioids now & the government taking pain meds away from legitimate chronic pain patients).  I am a patient leader for WEGO Health and a mentor for newly DX CRPS patients for RSDSA.  Setting all of this aside, just as one of my previous blog posts/ news articles states: “There are no competitions and no winners!”  (Can be read in this blog or here at the Ntl. pain Report: http://nationalpainreport.com/no-competition-no-winners-8833089.html)

In July 2017, I was certified by the U. S. Pain Foundation, to lead an “in-person” Support Group. Without having my wonderful, loving husband/caregiver, Craig; my loving U.S. Pain Foundation Family, my WEGO health friends, my friends, family and my writing, I’d be lost in all of this. 

Here’s the link to my Facebook page for this blog. This link takes you directly to the video called “The Incurables”:  https://www.facebook.com/TearsofTruth.SuzanneStewart/posts/1943805715875595


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

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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From Mini Van to Wheelchair In 10 Seconds!


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I awaken each day; the first thing that I do is cry. I cry because I’m in pain and it is as though someone stepped on my back in the night and feels “broken”.  My husband hears my cries and he goes and gets my pain medication. Medication that I’ve taken since 2005; and never more but sometimes less. He proceeds to start making breakfast, coffee and give tap water to our Cat. It’s her favorite thing in the morning aside from running up the stairs to get me after about 20-30 minutes. My husband says “Luna, go and get Momma”!  She bolts up the stairs and “Meows” at me to get up. She doesn’t stop until I am upright and together we go down the stairs. It’s almost 7:00 am, and most likely I just went to bed at 4:00 am. I have some tea and toast. We chat a bit and he goes to work.

I have choices to make and they are not easy ones. My oldest daughter only lives 2 or 3 blocks away, with her husband and our two eldest granddaughters, ages 4 and 2 1/2.  We see each other often but it’s so hard for me to fight the deep, deep fatigue and pain to do  a lot of outings and I just am not able to babysit alone, without my husband there.  I think it upsets her and I feel so bad inside because I cannot do what I wish I could do. The first year and a half that we were reunited (**my daughter left home at age 18 and was away for 10 years. This is not a story about those very sad times. This is about the reuniting of a family that was broken because of a car accident.  My daughters were used to me being and doing everything and suddenly I could not do anything, not even dress myself. My eldest ran from the pain and surgeries), I think I ran on adrenaline.  I saw her/them daily and then afterwards, I came home and crashed. Was that fair to my husband? No, it wasn’t! Did he say one word about it to me? No, because he was so happy to see my heart whole again. It was broken for 10 years!

So now it’s been about 3 years and so much has happened. I lost my Dr. of 12 years and the old pain medications that made easier for me to do more, it seemed.  My pain Dr. is much better now and the regimen that I’m on is safer.  But I’m unable to do the activities that I wish to do with them.  If I was the person that I had been, I would be making snow angels with them in the snow.  I’d be baking cookies and running around playing tag and “Duck, Duck Goose”. I do play some “sit down” (for me) games with them and we have tea parties. We watch Disney movies and I love it when they sit close to me and play with my hair. I used to take my walker to the zoo or on daily outings. I sat down when I was tired and I just was happy to be together.  I’m still so very happy to have everyone together. I could never have had a happy life without both of my daughters and my grandchildren it.

Time has changed me and now I am tired and in pain much faster;  more deep than before. In 2013, my CRPS changed from being in my feet and knees; to “severe systemic and disseminated”.  It happened after what was supposed to be a 45 minute surgery but turned out to be a 3 hour heart and pectoral muscle rebuild surgery.  I’ve never recovered and have felt a deep deep fatigue since then. If I do something for 2 hours one day, then I’m in my recliner for the rest of the day. I don’t want it to be this way, I don’t like it at all.  I want to spend a whole day at the zoo with my granddaughters.  I feel that my oldest daughter gets so frustrated when I cannot do the things I pushed myself to do at the beginning.  Nobody understands “Invisible Illnesses”, not even our own families or friends. We used to go to dinner each Friday with my best friend and her husband. I’ve cancelled a few times in this past year and now I can feel a difference.  Things that I wish I could do, I no longer am able to do.  I love and look forward to babysitting when my husband is home and he is with me.  He is there so that when I start to be too tired and in too much pain, he takes over.

But I lose friends and have lost people related to me. My own family cousin, who’d been my best friend for years; stopped talking with us after the car accident.  My husband had called and asked her to come over because I could not be left alone at the beginning. I couldn’t dress or undress myself.  I couldn’t even go to the rest room without help.  My cousin and another person who was a good friend of ours, told Craig “No, I just can’t help because it’s too sad.  When I get sad, then my family is sad and I cannot do that to them.” She took herself out of my life and so did the rest of my cousins, and family.  I called my own brother after the accident from the hospital. I had been unconscious and when I finally got to a room, I tried to reach for the phone and missed. I hit my cheek instead.  I called the only number that stuck in my head due to the TBI, it was my oldest brother. He answered the phone and I told him I ‘d been in a car accident, a bad one. I told him I was in the hospital and he answered back by saying, “Oh…you need someone? …..CLICK” and he hung up on me. Craig is my hero and the only person who’s ever truly loved me unconditionally. He’s there when I need him and when I think I don’t think I need him so much.

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A Day in The Life of A Brain Injury


           A Day In The Life of A Brain Injury

One day during the Summer of 2002, the sun was shining and my husband and I were walking hand in hand, sipping lemonade at an outdoor Art Fair. We were enjoying the warm air and each other’s company as we walked hand in hand. Afterwards, we’d decided to go into town for dinner because our two teenage daughters were busy with friends for the day. 

We were driving on our way to dinner when suddenly, I heard my husband shout out “OH NO!” I looked and saw a car coming straight at us. Instinctively, I pulled my legs up to my chin into the fetal position and screamed. What happened afterwards is a blur, but I do remember hearing a very loud noise upon impact and then the smell of smoke. Next, there was only a dead silence. I remember wondering if we were dead for about a nano second. Suddenly everything went dark and silent. That’s all I remember about that day, except short little pictures in my mind of the ambulance ride, hospital & ER..

Once I was admitted to the hospital, I do recall being very upset because I could not walk. No one would come to help me when I tried to call for the nurses. It was hard to use the “nurse call” button because my rotator cuffs were torn in both shoulders. Both of my knees had torn Meniscus’ and I had a ruptured Biceps tendon. There were just too many injuries and then the multiple surgeries that followed for many years. I have Degenerative Disc Disease and suffered multiple herniated and bulging discs at C4/5/6 and L4-5/S-1 with Radiculopathy. I had an MRI which showed that I was most likely born with Arnold Chiari Malformation I. It must have been “sleeping” all of those years, the Dr.’s told me. They explained that between the severe whiplash from that MVA & a whiplash that I suffered from a previous car accident; my Chiari had been awakened. I could not hold my head up at all. The pain was horrible and intense. My husband says that when they were doing my X-rays back in the ER; I was screaming because it was so painful. He said that I was crying out so loudly, that people standing in the hallway left; because they could not handle listening to the painful screams. I mostly remember my back and neck hurting so badly that I could think of nothing else.

My husband also told me that he kept trying to tell the Dr.’s that “something was not right” about me. He thought that I was acting very different from my “normal” personality. He said that when he told them I was acting “not myself”, they sent up a Psych consult. Then they told him that “I couldn’t handle the pain because of the abuse I suffered growing up and in my past marriage”. He didn’t know what to say although he knew that could not be true because I hadn’t been “different” just before the accident? After only 5 days in the hospital, and after their lack of being proactive to help me with my pain and injuries; my husband signed me out against medical advice. He took me to the Neurologist who had known me for 3 years at that point.

The Neurologist really got the “ball rolling” and had me tested for anything and everything that could have been wrong. At that point I was in a wheelchair, could not hold my head up and needed a yardstick behind my head/neck with a pillow on it. My husband rigged up a way to help me have something to rest my head upon. I could not dress myself, go to the bathroom alone or even cut my own food.

We finally found out what was truly wrong. Our questions were answered when I was diagnosed with a TBI or “Traumatic Brain Injury”. I went through 6 months of intense PT, OT and speech therapy. After that, I was in Physical therapy for 8 more years and brain injury rehabilitation for 3 full years. The brain injury rehabilitation was done after I’d done poorly on the Neuro-psych testing. Over the next 3 years, I was in a brain injury rehabilitation program. I was there Mondays through Fridays from 9:00 am until 3:00 pm. I had to have a driving company take me to and from the rehab center daily because I was unable to drive due to pain and nerve injuries.

I could not comprehend what I was reading and had a hard time finding the right words to use while speaking. I was more than forgetful and couldn’t remember my phone number, social security number or my own address. The tests showed that my short term memory was terribly low. I went to speech therapy, Physical and occupational therapy and had to re-learn how to drive via Drivers Rehab training. I did pass in the end, but can only drive a few miles for personal errands. They told me they were afraid that I might get someplace and not be able to find my car in the parking lot. Also, the nerve injuries in my legs, knees, lower back and neck; make driving terribly difficult and fatiguing.

It was and is very frustrating to go from graduating with honors and having a “photographic memory” to not be able to read a full book any longer. I had read the first 4 “Harry Potter” books and was in the middle of the 5th book, when the accident happened. I still cannot and have not been able to finish the rest of the books in that series. Whenever I’ve tried to read any books since that time; I end up reading, reading again and then re-reading. Every time I put the book down and then try to return to pick up where I had left off; I cannot remember most of what happened before that point. I’ve tried audio books and it is just the same. I try to listen and whenever I stop and try to go back to it; I’ve forgotten the whole beginning again. This brain injury has changed my life because I have issues with: double vision, severe dry eye, incomplete blinks, prisms in my glasses and continued worsening lowered vision. I have a moderate hearing loss and have 2 hearing aids now; when ironically, I was an Interpreter for the Deaf before that car accident. I worked at a major University hospital, Interpreting for Deaf patients and also at a school for the Deaf with Deaf children. My life was and is changed forever because someone was distracted and then ran through a red light. My husband’s life and the lives of my daughters were also changed forever in the blink of an eye. I had been a very involved mother who cooked, cleaned, did laundry and drove a mini van full of teenagers. I still made sure that I went in my wheelchair to every swim meet and dance competition. I didn’t want them to think my love or support for them had changed in any way.

I wanted to mention that I still have bad migraines, usually they are “Chiari” migraines. I have balance issues and my personality changed in that I get very emotional now, when I wasn’t like that before the TBI. I also have a hard time making decisions; along with having the same issues that I’ve had since the MVA. If you have had a closed head injury, a TBI or an MTBI, please contact Brain Injury Association for information.

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)