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!
I married to get out of the house, when I was just 20 years old. That lasted 10 weeks and it was so terrible that I won’t even discuss that time period. Luckily that marriage was annulled and I moved away to another city to work at a school for the Deaf. I lived between my 2 aunts homes and got to work with Deaf children. I loved that job and I was also Interpreting for the Deaf at a great church. I got to participate in 2 drama groups that did sign language or “ASL” to songs and choreographed dance. I had a wonderful time during the year that I lived in Arizona. It was 1982-1983 and I celebrated my 21st birthday there and was part of a church youth group with wonderful friends.
I arrived home from Arizona and later met someone. We dated, got married and we were married for 8 years. We had 2 daughters, a dog and a beautiful home. I won’t belabor the story of how the Marriage ended because people can be hurt still today, from that “story”. I will say that I obtained help from a shelter and the Women’s Resource center. I moved out of our home a few months later when my older daughter finished kindergarten. Their father moved 1800 miles away and rarely saw them. I took care of them all by myself. I was the only person that was always there for them! Even if I had to leave my job in the middle of the day to be there for them and return to work afterwards; I would do that. So much has happened in my life. Most people would think that it’s horrific, but I soldiered on. I was almost completely alone but the three of us had each other. We were very lucky to have received some help from some very good people, churches and counselors.
When my oldest daughter was in 4th grade, I went on field trips and I took every chance possible to help out at the girls’ elementary school. I started a “Sign Language club” at their school, for a group of 4th and 5th graders. I taught 35 children some songs in Sign Language and did that for about 4 or 5 years. I love children and had so much fun interacting with them. I would teach fun songs in Sign Language and at the the end of the year we would have a show for the parents and the rest of the school. The “Silent Impressions Sign Language Club” was after school each Friday. I had that day off from my job and used it for volunteering in the classroom or at school and for teaching the Sign Language club. Towards the end of that year, my daughters’ teacher and I started to discuss meeting up for a coffee. He was a single dad and I was a single mom but we decided not to date until the school year was finished. Once we started dating we found that we were truly “soul-mates” and a little over a year later; we were married in the Wedding Chapel on Valentines day 1997.
One Saturday afternoon during the Summer of 2002, my husband and I were meandering & sipping lemonade at an outdoor Craft fair; while deciding where to go for dinner. The girls were with their friends and so we headed towards our town to a restaurant. As we were driving through a green light, a man ran through the red light and “t-boned” our mini Van with his SUV. I only remember a terrible burning smell after screaming “OH MY GOD”! The “lights went out” and I have vague memories of being in an ambulance and at a hospital and crying due to horrible pain. Luckily my husband was not hurt and a Police officer took him home to get our other car and our kids. I have no memory of the time without him being there with me.
I could not stand or barely move. My husband says that people were leaving the halls because my screams of pain were too hard for them to hear. My case was given to a trauma Dr. and I was admitted to the hospital. After 5 days my husband called my Neurologist (who I knew because of a Long thoracic nerve injury in 1999); and signed me out against medical advice. The weren’t doing anything for me. My husband told them that I was not acting like myself. I wet the bed and could not even stand to go to the bathroom. Instead of diagnosing me correctly with the TBI, that I later was finally diagnosed with; they sent up a Psych consult. They told us that I was “acting that way due to being abused”. My husband stayed with me the whole time and it was still a horrible experience. I left the hospital and that’s when questions started being answered. My then, G.P. and Neurologist helped get me the testing that was needed. I was found to have 2 torn rotator cuffs and multiple herniated/bulging lumbar and cervical discs. I had a torn Meniscus, sprained ankles and wrist. Also, I was diagnosed with Chiari I malformation, which I was born with but until the MVA, it was “sleeping”. Well, it awakened and I started having the worst migraines in the back of my neck and head. I could not hold my head by myself. My husband had to put me in a wheelchair with a yardstick behind my back and head with a pillow holding up my head. I couldn’t dress or undress myself or even go to the restroom alone. I couldn’t cut my own food or sleep in my bed. The insurance company sent a hospital bed for me to use or I slept in our recliner. I was in the most pain I’d ever known, outside of childbirth. The Physical Medicine & Rehab Dr. sent me for Neuro-Psych testing and I was found to have a TBI or “Traumatic Brain Injury”. The report said that my “short term memory was in the toilet”!! I went to a TBI Rehabilitation Center, daily from 9:00 am – 3:00 pm for 3 years. I had several different areas of nerve damage. It was discovered that I have a convergence insufficiency in my eyes and Moderate hearing loss in my ears. I needed Prisms on my glasses and 2 hearing aids. As I continued to faint nobody would help me or even listen. My husband knew something else was wrong and so did I. But to get Dr’s to listen when things are complicated and when so many things wrong; is very difficult. I saw a Neuro-Cardiologist because the TBI center sent me to him finally because of the fainting. I was diagnosed with Dysautonomia and POTS. I had Coronary spasms and a permanent pacemaker was placed. I ended up having 8 surgeries! I had visited so many shoulder Dr’s but none of them would listen to my issue regarding a “nerve zing” that went down my left arm from my left shoulder. One Dr. said to me “What part of “I can’t fix it, don’t you understand? Is it your brain injury?” OMG!! He was horrible and while I was walking out with my walker; the girls in his office looked horrified by what their boss had just said to me. I had several awful experiences with physicians, until one finally listened to me. It only takes ONE Dr. Folks! One to listen to you and help you. I ended up finding out that during that entire year that I was visiting shoulder Doctors; my biceps tendon had ruptured during the accident and it had grown onto the bone incorrectly. I had to have open shoulder surgery! They had to un-attach my Biceps tendon and reattach it with 2 screws. It was very painful.
I went through so much! Later, I had my 7th surgery, which was in 2007 on my right foot. It was the start of another nightmare! I was told that it would be a 30 minute surgery. I had been put on Coumadin, a blood thinner; due to having a heart attack in 2005. Following that Heart attack, I was diagnosed with Atrial fibrillation. After that, in 2006, I suffered a CVA or stroke. The surgeon didn’t want to take me off of the Coumadin and so she put a blood pressure cuff around my ankle to stop blood flow to the right foot. The surgeon came out and told my husband after 90 minutes, that “once inside, the foot was much more gnarly” than she originally had thought. It took much longer than expected and there was no blood going into my foot during that time. Five days after my surgery, I was hobbling along in our kitchen and suddenly a big golfball sized lump popped out of my ankle and was purple, black and blue instantly! It felt like knives sticking in my ankle and I was writhing in pain. My husband took me to the E. R. but nobody wanted to help me. I sat there crying in so much pain while they “were waiting for another ambulance to come for the girl in the next bed who was “stable”. I was crushed again that no one would help me. We paged the Dr. who did the surgery and left the E. R.! She told us to meet her at the surgery center the next morning. I had to make it through the night like that! It was so much pain! She said that the “synovial joint sac had burst over my ankle joint “ and that is why it was so painful! She gave me Fentanyl Lollipops and told me to take them until the swelling could go down. That would take time & then the pain would lessen, slowly. I went for my 6 week check up and told her that the pain was worse than before I started. She told me that I had “a little RSD” and gave me some “Lyrica” I waited and things got worse and the Lyrica was horrible with nasty side effects. It did nothing but make things worse for me. I went to another Orthopedic Dr. and got a 2nd opinion. He walked by the room and said that my foot looked like “classic RSD” and he sent me directly to a pain clinic.
Prior to that MVA, I had only known the pain of abuse, and non physical types of pain. Childbirth was painful because I had 2 C-sections. The second time was a C-section after 43 hours of labor! But it was worth it because I got to have a beautiful baby both times! Also, there was an end to the pain of labor! There is no end to my current pain. The CRPS or “RSD” has gone systemic or full body since my 2nd pacemaker placement in 2013. Everything that could go wrong, has gone wrong. Mostly, because Dr.’s would not listen or had a preconceived notion of me and who I am. But I am strong! I am a survivor and it’s time to listen to me! I’m fighting for the pain patients and I won’t give up.
Many chronic pain patients, like myself, have legitimate concerns that we didn’t have to deal with a few years ago. Just prior to this Opioid debacle that has occurred in these past few years, we had enough to worry about due to our pain issues. We worry about finding good and trustworthy physicians, pharmacies that have our best interest in mind, tests that we endure and then pay for; among other things. We have to find a way to arrive at our appointments, possibly find someone to go with us and find Dr.’s willing to help relieve our pain. We just need someone to listen to our ideas, concerns and take our feelings into consideration at the same time. These days we have so much more on our plates and it is adding worry, pain and an increase in suicide to the list.
There are rumors flying on Twitter, Facebook and in the news media, that we have an “Opioid epidemic” in our midst. Lawmakers and those who don’t have a clue what daily life is like for the chronic pain patient; have just blindly accepted this hype. I totally agree that deaths from overdose of Heroin and other “street drugs” are happening. It is real and people are dying. I do know that the true “drug addicts” are mixing and/or changing some very helpful pain medications, with illegal substances and making more dangerous drugs that kill. But taking the small amount of relief away from pain patients is not going to fix the problem. The CDC, FDA, lawmakers and the Physicians who “don’t have a clue about chronic pain from a personal standpoint”; are taking away truly needed medications that lessen our pain on a daily basis. The chronic pain patient deserves to have some semblance of “normal” life. When they take away our pain medications, they are putting us back into our beds; where we are “sick” persons just waiting for relief. Hoping and waiting for someone to help us “fix” this Opioid conundrum that is happening around us.
The problem that I have found during my research, is that these groups of people that have “power”; meaning the CDC, FDA etc.; are “lumping together” true chronic pain patients with the average drug addicts. We are not one in the same! Apples are not oranges; just because both are called “fruits”. Dogs are not cats just because they are both animals. People who abuse drugs and chronic pain patients are not one in the same; just because both are human beings that need Opioids in order to live. The craziness will not end and drug abuse problems and/or deaths will not be over, by taking Opioids from the true pain patients. The chronic pain community has been living in fear and agony since the new guidelines started. What I’m talking about is a real public health issue that is being made worse and not getting solved. Denying the chronic pain community the one thing that may give us some small quality of life, is definitely not going to fix anything.
What I have noticed after speaking with a Governor’s secretary, a Senator and officials within my community, is that they don’t realize that there’s a difference between being an addict and being dependent physically. I heard a Senator say that she never thought about how a chronic pain patient may be physically dependent but not be “addicted” or crave the pain medications. They don’t truly understand that Opioids are sometimes the only choice and last resort. Some of us are not candidates for other treatment modalities. Frankly, there are others who just don’t want or cannot have another surgery that might increase pain and medical issues. I was told by one Senator, that we need to be a voice. They need us to make phone calls, write letters and these kinds of articles. We need them to really listen and then make real changes.
The drug addict needs and craves their drug of choice in order to function. They get a “high” from taking drugs. They mix drugs and change medication from its original form sometimes, in order to get that “high” . A drug addict lives for their daily “fix”. The chronic pain patient, on the other hand, does not get a “high”from Opioids. We take prescribed pain medications in order to live some sort of life outside of our beds. We don’t live for the pain medications. We take them in order to have a life with lessened pain. The Opioids give a slightly higher quality of life to some of us and the unbending hand of the Government is slowly taking this quality of life away from us.
I totally agree, that Opioids should not always be the first drug of choice for chronic pain. There are other modalities to start with. But in the end, if the only thing that works for certain patients who live with daily debilitating pain, are Opioids; then these patients should be allowed to have them. The chronic pain patient should be allowed to live without feeling like a criminal or as though we are “bad” or “flawed” people. We also should not have to take a slew of lesser medications in order to “try and fail” them before getting what a board certified pain Dr. may prescribe as first choice if his /her hands weren’t “tied”. The persons with power to do something about this debacle are continuing to deny tens of thousands of chronic pain patients the only treatment that may help lessen their pain, our pain, my pain. They are holding us hostage to a life of agony and they need to be informed. Those persons who have the power to help chronic pain patients with this confused issue, are listening to misinformation. They are looking at skewed and manipulated data. They are basing their choices, ideas and guidelines on poor medical analysis and data.
The guidelines for the use of Opioids in the medical setting should be changed immediately. Those persons on the committees who wrote these newer guidelines were those who have a monetary stake in getting rid of these medications. By this, I mean those who own other forms of treatment centers.They are also the “Prop” Dr.’s who have only one point of view and it’s not the same point of view as those who truly know what its like to live with daily chronic pain. The initial’s “PROP” stands for “Physicians for Responsible Opioid prescribing”. But they don’t really approve of any kind of Opioid prescribing. They and others who wrote the current guidelines, want Opioids eliminated for the afore mentioned monetary reasons and due to the propaganda surrounding celebrities deaths from overdose. In the celebrity cases, and many other high profile and even low profile deaths from overdose; there were other medications and street drugs mixed in with the Opioids. That is truly how those persons ended up dead.
The guidelines for the use of Opioids with chronic pain patients should be withdrawn now! They should be rewritten by a group that consists of board certified physicians who have true experience with chronic pain patients. Better yet, add some physicians who actually experience chronic pain themselves. Excluded in the group to rewrite the guidelines, should be anyone with money to gain from getting rid of Opioid medications. Let’s get real! People die from NSAIDS! In fact, I’m not allowed to take them because of my chronic renal disease. Others die from Liver issues from taking too much Tylenol.
At one point, there was a group of U.S. Senators that introduced legislation to put a federal tax on all Opioid medications! It was called the “Budgeting for Opioid Addiction Treatment Act”. In a nutshell, they wanted to make chronic pain patients pay one cent for each milligram of active opioid ingredient in their daily pain medications. This money was then going to be used for treatment centers for drug addicts! How ludicrous is that? Would anyone ever think about taxing my grandfather for taking insulin, because he is diabetic? Would they put a “fine” or so called “tax” on high blood pressure medications? NO! Nobody would place a “fine” or a “tax” on illnesses such as high blood pressure or diabetes, yet the medications taken for those illnesses also make people “dependent” on them. A person can’t just stop taking insulin or they could die! The heart medication that I take cannot be stopped abruptly, or I could have a heart attack! So you see, there are many medications that people may be “dependent” upon. That doesn’t make all sick persons “addicts”. We all take the medications that we need for our diagnosed medical conditions. The drug addict actively wants, craves and seeks out their drug of choice. Those of us living with chronic pain truly wish that we didn’t need to take any medication. Chronic pain is an illness just like any other.
I’d gone to a pain Dr for 3-4 yrs s/p a MVA . I had multiple injuries/surgeries. They forced me to take opioids! I was afraid of them. Not for any reason; because I have no history of smoking or drinking or taking any kind of meds! I have a letter that the pain psychologist wrote, stating that I “don’t have an addictive personality.”…..so then I did all of the injections etc. & all of the PT-OT, Biofeedback etc. They wanted to give me an Intrathecal pain pump. Then we found that I am not a candidate due to Combined Immune deficiency disease. Soooo then the pain Dr “dumped” me off back to my GP for pain meds only! He said the the “Govt. looks at him through a microscope” so he wanted my GP to do the meds. So that was 2005 and in 2014-Dec., my GP had Feds at his office & he was removed from that office & sent to an urgent care! I was stuck because nobody wanted to prescribe the fentanyl losenges and patches for me (with Dilauded for emergency). I went back to my old pain Dr and he refused to see me! He said that “he didn’t want any part of that other Dr.’s (the GP) mess”! He wanted to send me to his “pain Dr. friend!” I researched the guy to find out that he was or is actually an addiction specialist. There was no way I was going there! I’ve never even smoked cigarettes! There’s no way I was allowing “that” to follow me around in my medical records. So I did it on my own! The partner GP offered to help me for a few months but asap I was told to find another pain Dr. But I wasn’t just told that, I was badgered over & over again to go to that specialist. I lowered my doseages myself. When I finally found a kind pain Dr. who was respectful towards me; he told me that even though I’ve had a CVA and an MI, I was to “stop the Fentanyl losenges cold turkey!” I had gotten myself down to half of the amount of the patch. I stopped the losenges on my own, on the day that the new pain Dr. told me to. He told me that I never should’ve been on them in the first place. They’re for terminal cancer patients and even he’s not fond of them! He was visibly upset that I’d been on them for about 10 years! So I got down to half of the patch amount and to zero losenges! I was very very ill! The new pain Dr. told me that my body would be “fooled” because he gave me a smaller amount of opioids & I was still on half of the amount of the patch! Well, I’m here to tell you that my body was not fooled! Nothing was fooled and I was sweating, nauseated, had diarrhea and got very high fevers and blood pressures! I started researching withdrawals myself. Nobody was helping me, except my poor husband, who was feeling helpless. Nobody felt as alone and helpless as me during those dark days! I was so happy to have my loving husband to take me by the hands & walk with me through it all. It was a horrible 1st week; like the flu, but worse because the pain was so much higher. After about 6 weeks, things got better. But I must tell you that I never once craved the medication! I was happy to be rid of those losenges, actually. I’m very proud of myself for what I did all on my own, for the most part. I now have a wonderful pain Dr. Who cared enough about me to let me go and not treat me if I couldn’t do what needed to be done. I did it and I’ve done it and now I’m on about half as much medicine as I was on during those 10 years. I also feel like my pain Dr and I mutually respect each other. I did something by myself, that many or most people couldn’t do even with help!
I am guessing that we pain sufferers all feel the way that I feel today, at one time or another. Today it feels as though things are piling up.
Not to me, I say. After all, I’m a Health Advocate, Awareness Warrior, Pain Warrior, Ambassador, Mentor, fundraiser, event planner, writer, fact finder and guest blogger. Of course, I’m also a chronic pain patient, but feel that I should have big shoulders, whether they hurt or not. That’s been my place in this not so new life, since 2002. The pain is not my choice, but how I choose to deal with it is up to me. I choose and have chosen to help myself and others. By advocating, fighting, writing, posting, protesting, tweeting, & attending conferences for all of us. Like Ghandi said “Be the Change you want to see in the world.” I say change starts with me!
I try to listen. I don’t mean just “hear what is being said” but hear what’s not being said and try to make something good happen in all our lives. I like to make change that is good, even if it is only to put a smile on someone’s face for one day. I truly enjoy caring about other people and making them feel good or better about themselves or their situations. I remember one time, in one of my own support groups that I still moderate today; I got to do something extraordinary. One woman had a wheelchair that was too big for her. I found a man who had one that was too small for him. I got the two of them together and they swapped wheelchairs. The joy on their faces and the feeling of warmth that I got from that experience, was the best medicine that I could’ve ever had to help “me feel better.”
And yet it is suffering that is happening right now, today in many doctors’ offices, pharmacies, emergency rooms and patient homes. But I won’t allow us to suffer in silence. It’s happening and has happened to me. I’m not watching the “Opioid War” play out on a television show – I’m living it. My husband dropped off my legitimate prescription for opioid pain medication 6 days ago. He took it in 2 days early, as per our routine, to be filled on the 3rd day. This happens monthly, not only to me, but to many other chronic pain patients. After suffering for 3 days without my pain meds and being at the mercy of the Pharmacy/Pharmacist, I finally obtained my medication. It’s not safe to abruptly stop taking these meds for several days. I’m in a small subset of pain patients who are candidates for opioids for medical reasons because they do help to lessen the pain.
This is not an “Opioid War.” It’s a “war” being fought by chronic pain patients and some supportive physicians and organizations that stand tall with us. It is all of us against the mainstream media, PROP, addiction specialists (who only see dollar signs in our pain), the CDC, the DEA and some unfortunate people who’ve lost someone to an overdose, I’m afraid.
The reward for my advocacy work is inside my own heart and soul and gives me an inner happiness or peace that nothing material can top. It feels good in my heart and soul when I’ve helped another pain patient feel revived or even just a little bit better, less afraid, less alone.
But today, I am feeling sad. This is the harder part of my journey; along with the loneliness, stigma and then of course my own pain which echoes within me and vibrates like an earthquake. I know other pain patients feel that it seems insurmountable at times. I am a chronic pain patient just trying to survive one day at a time, like everybody else.
So, let’s remember this! These opioid pain medications are available, have low side effects and they are not expensive. People who need them and who get relief from daily chronic pain, should be able to have no problem getting these medications. A true chronic pain patient is not “addicted” but “dependent” on the opioids. We do not get a “high” and we do not “crave them.” We take our medications responsibly.
These opioids help many of us who’d suffer in pain daily without them. My favorite advocate, Helen Keller, once said “I am only one, but I am still one. I cannot do everything, but still I can do something. And because I cannot do everything I will not refuse to do the something that I can do.” I will continue fighting for our cause as long as I can breathe.
We must fight because we cannot afford to lose.
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
Tonight I watched a CNN “Town Hall Meeting”, with Anderson Cooper, Dr. Sanjay Gupta, Dr. Leana Wen and Dr. Drew . This was nothing like what a “Town Hall Meeting” is supposed to resemble! It was “one-sided” ……..and there was no one sticking up for the rights of chronic pain patients. Oh,I know that they were there. They were in the audience just hoping and waiting for their chance to get out “our” thoughts on the subject of Opioids. They’re being slowly taken from us as we writhe in pain and the so called “Dr’s against opioids” want us to “think our pain away”! Better yet, why not have a CRPS patient with Allodynia (hypersensinsitive to touch)/ pain patient, get a massage?? Once & for all, an “addict” is not the same as a chronic pain patient! Pain patients are not addicts. We do not “crave” our pain medications. We do not have overwhelming thoughts about our meds and we do NOT get any kind of “high” by taking our prescribed dosages in a responsible manner! This is what I’d like to say to the producers, Dr’s & Mr. Cooper, at CNN! Those persons who hijacked what was supposed to be a “Town Hall meeting”. But in real such arenas, you get to hear from both sides. This meeting was more like a documentary against the use of Opioids! At one point Anderson Cooper allows a long time Opioid user, who’s a chronic pain patient, to take the microphone. She says that she’s been having a better life while taking the Opioids responsibly for over 20 years! She was “cut off” mid sentence by Dr. Drew, who tells her and everyone else that “she us NOT the Norm”! It got worse and more against “us”/ the people living with chronic pain, as time went on! Here is what I’d like to say to them should I get the chance:
This letter is not only for CNN’s Anderson Cooper, but for Dr. Sanjay Gupta, Dr. Leana Wen & Dr. Drew;
First of all, I’m writing not only for myself, but on behalf of all Chronic Pain patients. Number 1: The Disease of addiction is NOT equal to the Disease of Chronic Pain! They are not one in the same! That so-called “Town a meeting” on CNN this evening was not one at all! A true Town Meeting is an open forum that promotes Democracy! Tonight, Anderson Cooper & CNN’s “get together” with Dr.’s Drew, Gupta & Wen; was more like a one sided opinion/discussion meeting! Only one true chronic pain patient got to speak! Not only was she interrupted, but then Dr. Drew had to make sure to say that she “was not the ordinary”!
I’ve been a patient with chronic pain since 2002 s/p a MVA! Then after those multiple injuries, 8 surgeries and more pain than I want to remember, I got the worst form of Chronic Pain, called “Complex Regional Pain Syndrome”(it is #43 on the McGill Pain Scale. It’s right up there with cancer, childbirth & amputation of a finger). It was then, that I truly knew what chronic pain was all about. Or so I thought, until my CRPS went systemic/full body, s/p another surgery in 2013.
Mr. Cooper, at your meeting,it was mentioned that “2 million Americans misuse Opioids”. But do you know how many Chronic pain patients take their medications just as prescribed? The majority of Chronic Pain patients are conscientious in taking their prescribed Opioid pain medications. We do not CRAVE or get a “high” from our prescribed pain meds. Nor do we allow our pain meds to control us or our every thought. On the other hand, an addict is controlled by his drugs! That’s one main difference between pain patients and addicts. I control my medications, they don’t control me! Dependence and addiction are completely different. Many meds can cause withdrawals when cessation begins, for example: blood pressure medications, anti-depressants, Beta Blockers and so on! Do you know that “WE” (Pain patients) get lumped together with Heroin addicts? What if your mother or sister suffered 365/24/7 with horrible fire-like burning pain, like that of CRPS? Would you be so quick to push them into a category with “drug addicts”? What if they were under a reputable Dr’s care and taking pain medications in order to function and be able to get out of bed in the mornings?
Untreated Chronic Pain kills too! Opioids have been prescribed for pain for many years! Why punish everyone for the actions of a some? When we are taking our pain medications responsibly and as prescribed. While we are under the care of a Medical Doctor who went to school for many years to learn his job; (whether he /she be a GP or Pain Management specialist). This Physician took the oath to “Do No Harm” and as long as they’ve been prescribing responsibly; then there’s no reason for any of this! It’s just the latest hype by those who are “on a mission”! The people who are up in arms about this subject, are those who stand to lose the most money if we are allowed to just continue taking the medications that work for some of us! I’m talking about The Private clinics that are getting $2,000 cash, per Ketamine infusion because insurance doesn’t pay for that. Desperate people in horrible pain are willing to pay cash to have some sort of hope or even short time relief!! (**Ketamine is a much more dangerous drug! It’s used in Veterinary medicine , to tranquilize a horse)! Others that stand to lose money are the manufacturers of the spinal cord Stimulators and pain pumps, along with Massage & Acupuncture centers. Why let us take an inexpensive pill that has worked for several years? If something is and has been working, please don’t take it away?
The Disease of Chronic Pain does not Equal the Disease of addiction! Lastly, people suffer because Chronic Pain is not only stigmatized but it’s under treated. Suicide rates rise & will continue to do so, due to this lack of treatment & lack of availability of the medications required for the relief of chronic pain. Also because physicians are “running away” and closing their doors on chronic pain patients because of the fear that they now have of being taken away to jail just for doing the job for which they went through many years of schooling and took an oath to “Do No Harm”!