Set Up For Failure; War on drugs and Mental Health

Our country needs to legalize or decriminalize drug use. This statement might seem pretty extreme but I’ve been thinking about it for a while and when you see the big picture, it’s the only way that makes sense. I’m debating starting a petition. What we need are people to actually read the reasoning behind that statement with an open mind and not with the mindset that people just want to use drugs. I don’t even use drugs. Keeping drug use as a crime against society causes harm and hinders people from seeking help.

Merriam-Webster states that a crime is an illegal act for someone could be punished by the government. Especially: a gross violation of the law. (1). But there is also a legal definition of crime that allows for prosecution for breaking a law. The legal definition per The Free Dictionary by Farlex states, “n. a violation of a law in which there is injury to the public or a member of the public and a term in jail or prison, and/or a fine as possible penalties.” (2). 

Also from them is this statement, “There is some sentiment for excluding from the “crime” category crimes without victims, such as consensual acts, or violations in which only the perpetrator is hurt or involved such as personal use of illegal drugs. (See: felonymisdemeanor).”

Typically, to be considered a legal crime, it must be a violation of law against another person or property of another person. With drug use, the crime is simply against oneself. There is no crime against another for simply using a substance. And yet, it is considered a crime. I believe we need to change that and I have good reason for feeling this way.

The ‘War on Drugs’ has been going on since the 70’s. They’ve had 50 years, FIFTY YEARS to perfect it and have failed miserably. The only thing this war on drugs has accomplished is making drug use illegal, stigmatized drug users, stigmatized legitimate patients using a proper medication to relieve pain due to some abuse by others, and creating large barriers to people seeking help both mentally and medically.

There are various types of drug users. Those who use recreationally like any other person who likes a nice drink on occasion to unwind, those who use to drown their troubles and hide their pain due to some internal or external conflict in life, and those who can’t seem to function without drug use who are the legitimate patients addicted to a substance. Those with addictions need extensive help and therapy to fight their addictions and live drug free. The recreational users don’t need any kind of therapy as they use just like a person who drinks on occasion. Those who use for drowning their troubles likely need therapy to help manage the issues that drive them use in the first place.

With drugs being criminalized, seeking help places the individual in a very sticky situation where their very lives are at risk simply for seeking help. If they have children, their children can be taken from them. If they have certain careers, their careers can be destroyed. Just the fact of use being illegal sets barriers against those seeking help. The stigma as well keeps people quiet. I’m certain there is a large portion of users who desire help but the fact that use is stigmatized and the fact that use is illegal keeps them from seeking the help they need. There is also fallout that affects those who don’t even use illegal drugs who are looking for help. A ripple effect that spreads far and wide touching those who don’t even use illicit substances yet use legal medications that some have chosen to abuse, harming many pain patients who simply want to function in life and yet they are thrown into the stigma with those who use illegally thanks to misinformation campaigns, the media, and organizations seeking to demonize the use of opioids regardless of the reason for using them.

I would be remiss without mentioning the stigma of mental health which is often linked closely to drug use though not all mental health issues lead to drug use. The stigma of having anxiety, depression and other mental health challenges is just another barrier to those who wish to seek help. We desperately need to break those stigma’s paving the way for those holding close to the vest their mental hardships that may simply need, talk therapy.

I absolutely believe that by legalizing or decriminalizing drugs, our war on drugs would be successful in a way it never has before. Why repeat the same mistakes over and over and over that achieves nothing but more harm. Stubbornness? Pride? Some kind of deeper ulterior motive? Whatever it may be, it’s not for the American people as we’re the ones that are suffering because of it.

The fact of the matter is, people WILL USE DRUGS. That will never change. There will always be someone either seeking to get high or seeking to drown their troubles in some kind of substance legal or otherwise. I’m pretty certain this is an established fact. We know that for some, drug use can lead to dirty needles, spreading of disease, unsavory behaviors, and harm against oneself. The person inside has issues. They need help to find the reason why they are seeking out the substance to begin with. I’m not referencing recreational users. They’re in a different playing field and having been around many growing up, they don’t need help no more than a person who drinks alcohol to unwind on weekends. They just chose a method that gives them a different feel than alcohol. But those seeking to numb their pain, physically or mentally, are the ones I’m referring to in this article, the ones who need real help to keep them from spiraling further and to put them on the road to recovery. The way our society is set up, keeping drugs illegal is a barrier to receiving help.

Our country has slowly added some changes to help with some of the issues that are caused by illicit drug use, such as offering clean needles which is a good thing as we know, they’re going to use regardless so at least we can help decrease the spread of disease if their route of choice is the needle. Some countries have legalized or decriminalized the use of drugs and have shown much success in doing so. Maybe we can follow their lead.

By legalizing or decriminalizing drugs, we can lift the stigma attached to it. There are a lot of fears for someone to admit to drug use. For one, it’s illegal!! How can you expect people to get help if they have to admit to doing something illegal? That alone is a huge barrier for those who do want to seek help! If they have children, they fear losing their children. If they have a good career, they fear losing that career. So many reasons NOT to seek help all because of the legality involved and the record it will leave on the person for simply admitting it.

Imagine having your permanent record marked as a drug user then that person seeking medical help after an injury or for chronic pain. Now because of that label, that person is not only treated differently in the medical establishment but they can also be denied pain relief!! I’ve spoken to people that have had this happen. I also know a family of someone who was mislabeled as an addict who went through an extremely painful surgery and then was denied proper pain relief. He killed himself. Killed himself!!! And even sadder, he never misused his medications, he simply used a medication off-label for chronic pain that is given to those who abuse drugs, even though he never abused them. This very stigma smeared his permanent record, labeled him as an addict and then led to him being denied proper pain management. This also shows that those who do abuse drugs may not ever have proper pain management all for seeking help or being labeled as an addict. They are treated differently in the medical system. And people wonder why some refuse to seek help.

Legalizing can rid a huge portion of this problem. In time, the stigma will fade and people can simply reach out for help if they find themselves in trouble.

What about legitimate pain patients? Many of us, myself included, use opioids legally and yet there are people out there that abuse them with and without a legitimate prescription though studies have shown most illicit users don’t even have a legitimate prescription for the drug they are abusing so it’s not legal prescriptions causing the bulk of this particular drug abuse but a heavy handed organization and campaign has ruled with an iron fist to not only heavily tighten the availability of pain medications but to reduce the milligrams needed by even legitimate pain patients as if it’s one size fits all and assuming that after a certain dose, harm will be caused. Never in the field of medicine have I seen a drug that flat out limits the maximum dosage allowed when each individual is a person that metabolizes a medication differently and the reason why various dosages are created and prescribed. Tolerance to any substance can be built causing a need for higher dosages of ANY drug/substance and yet they put a limit on pain medications that allow those in chronic pain to function in society at least as much as able. How is this ok? Not only that, but they just attached a huge stigma against the use of pain meds to go so far as creating children’s books that talk about ‘mommy using opioids’ and needing help…. Wait what?? Wouldn’t it make more sense to talk about illicit drugs as a whole rather than single out one particular drug that used by many to keep someone functioning? Why put fear into a child about pain meds? Pain meds are good for those who have need of them and due to all of this, an even larger harm has been created in our society in the last few years due this campaign against opioids, no different than their ‘war on drugs.’

Hospitals given incentives to limit their use of opioids by paying out more money if they can use alternative means. There will always be those who abuse their roles and story after story was told of being left in severe pain from surgery after waking up and being denied opioids. Yes, that happened over and over as hospitals raked in extra funds for using Tylenol and in some places, lavender essential oil for pain. I truly feel like I woke up in the twilight zone and we’ve gone back in time to biting a stick for pain.

Legitimate patients using opioid medications to function were taken off of the medications without choice. Left to suffer not only the withdrawals of stopping this medication but also to suffer the effects of their chronic pain and debilitating condition without a proper medication to reduce the pain. They were left to suffer. I’m sure almost all of us were left in fear as we read story after story of patients having their life saving medication taken away from them, waiting for it to happen to us. Many who were on high dosages (higher than what some non doctor decided was the threshold) were suddenly tapered down (some without taper) to fit under this new imaginary number that the CDC determined people can’t go over. A recommendation, not law, that was also ruled with an iron fist with the DEA going after good doctors who refused to go by this “RECOMMENDATION.” What has our world come to? They just created more illicit drug users as some took to the streets in defiance looking for illegal ways to reduce the pain that riddles their bodies. Legitimate pain patients!! Some turned to suicide, refusing to live a life in severe pain without relief, care, or help. You’d be shocked if you knew all the numbers involved. They don’t talk much about that in the media. America’s dirty secret. The rest are left trying to function on doses that don’t work near as well as what they had prior, struggling to function. Some of us were lucky. I’m thankful I wasn’t over the ‘recommended’ limit but the fear of having my meds taken away is real not only for me but for those aware of the situation our pain patients are facing. Many patients have even refused surgery due to the stories of those left struggling with little pain relief after their own surgeries. No one wants to wake up in severe pain after being cut open and left to suffer.

Story after story run by the media about this crazed ‘opioid epidemic’ and all these deaths due to opioids and yet the real numbers tell a different story. Illicit drug use, not prescription medications, are the cause of these spikes in death. Illicit drugs cut with powerful substances being sold on the streets not in doctor’s offices. So why smear legitimate pain patients? Why punish legitimate pain patients? That’s pointing the blame at the wrong person and then punishing them for a crime they didn’t commit. Why?

If drugs were legalized we wouldn’t have this problem. If truth and justice existed we probably wouldn’t have much of a problem either but that’s doubtful to change any time soon. If we legalized and regulated drugs, we could safely allow those to continue a habit they would continue anyway but without the fear of what’s in it, without the fear of a tainted supply, without the need to limit good legitimate patients for a crime they didn’t commit. They could also make money off it if they so chose. There’s always money in drugs. Take the money from the cartels and black market that will always exist and put it into our states instead. Create REAL programs for those with addictions and those who need help with mental health problems. Imagine the facilities that can be created off the money made. Real facilities, not thrown together back alley rooms where people NEED to remain anonymous and help is limited. How about plush retreats that only the rich can attain. I’ve researched wilderness camps for my child, a nice nature retreat where he can reset and get guided help and focus on his anxiety and depression and you want to know what that would cost me? A mortgage in some places! Over $50,000 for short session with all the right tools in the right places that might actually help my child rather than the closed off room in a small office where they simply sit there and talk or at least try and talk as some children don’t want to talk about things going on in their heads. This boils down to rich vs poor and what’s available to each. It’s sad. Don’t we want a productive society? Don’t we want people to get help and better function in this world, able to give back? Yet our country places stumbling blocks in front of us, creates massive stigma’s and criminalizes behaviors that are not against society but simply against themselves creating those barriers that keep people from getting help.

We’ve done a good job at our institutionalized places of learning teaching our children about the dangers of drugs and the legalities around it but what have we done to teach them about love and compassion and seeking help in a world that tells them it’s bad to begin with? It’s a catch 22. We need to break that.

It’s really no different than someone who feels suicidal but can’t be honest about it without getting locked up or having their children taken away from them. The stigma is real. We’ve placed those barriers in society and then expect people to reach out and get help. Yeah, you might catch a few of them but most will simply bury those feelings and try and suck it up, never truly able to be honest or seek the help that they need. Then compound that by being a chronic pain patient on a legitimate prescription and the fear of having their meds taken away and what help is truly available for them.

Here’s an anonymous example of someone’s life:

Imagine living with chronic health problems, keeping a person disabled. They get a few hours relief each day from the pain meds they’re taking. This person’s a fast metabolizer of medications and already on the max dosage ‘recommended’ by the CDC so no more meds will be given to help with the pain. On good days, the meds work well for three hours but on bad days they only last one to two hours so there’s a lot of break through pain but a second script to cover that is no longer available. (And yes, many alternatives were tried and nothing other than heat which lasts maybe 30 minutes have been successful at reducing the pain.) They are only allowed one pill every 4 hours. But instead, they take the meds as needed, knowing their own bodies and making their own decision at how to handle it so they take the meds every 2 to 3 hours depending on the level of pain their experiencing. Yet, every time they see their doctor, they say all is good as they can’t be honest. They’re not allowed to be honest. Being honest will get their medication taken away from them. They know damn well they won’t get additional pain help and they know damn well they can’t be honest about not taking their prescription as prescribed. Is this person a bad person? Is this person abusing their meds? Is he a drug addict? In my view, the answer is no to all those questions. Our society has simply set up road blocks to being honest and receiving adequate care. And for the record, on really good days, he can space the meds out even further apart and sometimes save an extra pain pill for a rainy day so it’s not like he’s simply using them up for some kind of need/addiction.

Let’s talk about saving those little pills. Unlike some meds where you can be an adult and simply take them when needed, with pain meds, you are expected to take every single pill exactly as prescribed. If you admit you’ve had some good days going on and were able to reduce your usages by even one little pill, the next thing you know, your script will change, your meds will be reduced and you’ll be left to suffer when the good days end and the bad ones pick up again. We’re not allowed to be adults. We’re not allowed to be responsible for our own usage. We live under an iron fist and treated like junkies as we have our meds counted, our urine scrutinized, and treated like we’re criminals even picking up those meds at certain pharmacies. It’s dehumanizing. So no, if they caught wind that we had even a tiny little stock pile of extra pills for when pain gets brutal and knowing we won’t be given help during those days, that’s grounds to remove our meds.

Imagine in a disaster if things shut down, knowing your exact count and when your meds will run out. We’re not allowed to fill early and we’re not allowed more than a month at a time even though any other drug is allowed up to a 90 day supply. Not pain meds. We simply might use them before our prescription runs out. But truly, legitimate pain patients know better than to be so stupid. We know how many we get. We know if we were to run out early, we’re not allowed an extra fill. That’s drilled into us. Who in their right minds, who legitimately need them, would blow through their meds? How is 90 days any different than having our 30 days? We know the count.

Every time we see the pain doc, we have to fill out a form that asks lots of questions in relation to anger, mental health, depression, ect. Of course they also ask if we abuse our meds, take them beyond how they’ve been prescribed or for reasons other than what they were prescribed for. My honest thoughts? Who the hell would admit if they did? What if Janey discovered they helped her anxiety and on a really bad day she takes them for exactly that. What would admitting to that mean for Janey? She’d have her pain meds taken away as she signed a contract (another thing required of us) and would be considered to have broken that contract. So why ask? What about the example of the guy above? What if he admitted to taking them sooner than prescribed? Again, there go his meds. And obviously if you have some idiot getting pain meds to use for illicit means or to sell them, do you honestly think they’d admit that on that questionnaire? Seriously? What’s the point? You can’t be honest, you’re penalized for trying. Though the person using it illicitly shouldn’t be doing so via pain management route, even if they legalized drugs across the board. Those people would need to go a different route, however that would look like. Pain management should solely focus on those seeking pain relief.

I’ve often wondered why they ask questions about anger or depression. With so much fear of losing the only med that gives some sense of relief, would those meds be taken if you admit to feeling depressed? Angry at life? Suicidal? Again, these stigmas come to hinder people from seeking help in one of two ways.

What if someone was severely depressed and wanted to seek in treatment for their depression? There are two immediate and very logical fears that come to mind, having seen my own mother going through a similar situation. Suppose you admit yourself to a facility for some much needed help. What if your facility doctor decides you shouldn’t be on pain meds? What if they decide that your dose isn’t appropriate or that they fail to give your medications on time? Those are real fears and real experiences had by others. In my mother’s case, she takes one very small dose of pain meds each day for her restless legs. No other med has reduce that pain except her pain med. The doctor didn’t feel she needed it even though she’d been on it for years with great success. Not only did he try and deny her dose of medication but he attempted to have it removed. She won that battle but it was hell for months after having to rejustify and fight to keep on it.

Psychiatry is NOT pain management. Yet it was a group of psychiatrists that first attempted to control the facade of the ‘opioid crisis’ seeking out the CDC and determining their own recommended dosage limits and starting this war on pain medicine. They were quite successful to the point of states creating their own opioid tasks force with many many states not having a single pain management doctor on the panel. The very specialty in prescribing opioids and yet that type of specialist was excluded from the decision making and denied the input that would ultimately affect his job and his patients. Nor did they allow the insight of chronic pain patients when setting up this new guideline. It’s so mind blowing how this whole thing came about, how it was handled and how many rolled over and just accepted and allowed it. Those who fought back got penalized. I’m starting to think our country is slowly moving over to a dictatorship.

(1) https://www.merriam-webster.com/dictionary/crime

(2) https://legal-dictionary.thefreedictionary.com/crime

Set Up For Failure; let’s talk mental health.

One of the very first statements a counselor or psychiatrist will tell you is that if you mention that you are a threat to yourself or others, they will be obligated by law to report you. The immediacy of walls and defenses thrown up is a hindrance to getting real help and therefor the system is set up for failure before it even gets started.

What exactly constitutes a threat to your self or others? Obviously actions and a plan is part and most important (and understood) but what about thoughts? Are they acting like thought police, waiting to report someone for simply having thoughts and feelings of harming oneself or others?

What exactly does it mean when someone is reported? Will they be immediately taken away and locked in a padded room? Will they be flagged in the system and heavily watched? Will CPS get involved and disrupt their lives? Or will it simply allow for immediacy in a referral and moving to the front of the line? There’s so much uncertainty in this situation that it causes a major roadblock in seeking help. WHAT DOES IT MEAN??

There’s already a negative connotation and stigma attached to mental health. It’s hard enough to admit ones thoughts and feelings especially when they deviate from the norm. Our system is so set up for failure, there’s no wonder why bad things do happen and people turn to drugs, self harm, or snap and hurt others. Not to mention the dangers associated with being bullied in schools and lack of recognition from the adults who are suppose to keep you safe and help you. With conflict resolution just getting started in some of the schools, we’re simply barely scratching the surface. Today’s bullying is no where close to the bullying that went on in decades prior. With as many kids suffering from autism, health issues and mental health issues like never before, we need to change our system immediately to make sure no child is left behind in getting the help they need to feel safe, understood, and treated as necessary.

We absolutely must rid the stigma attached to mental health issues. We must decriminalize drug use and focus our funding on building more safe places for kids and adults to seek treatment. We must put our funding in training more medical personnel into understanding and treating those needing help. We must change our approach. God knows, what we’ve tried both on the mental health front and the war on drugs front hasn’t and won’t work. Why keep repeating the same failures over and over? Pride? Stubbornness?

I hate to say it, (sadly it’s true enough) that those with money typically get the best help available to them, state of the art facilities that provide real distractions, focused therapy and compassionate care that those without the finances don’t have access to. It was shocking to discover the cost involved in wilderness camps for teens. I could buy a house with the admissions charge they ask for. Yet, studies have shown wilderness camps as having a good success rate in achieving long term skills and recovery. A basic clinical facility with underpaid staffing and simply throwing one drug after the next at someone is not the answer and may drug and sedate a patient long enough to appear recovered but they will simply relapse shortly after leaving the facility.

All these millions if not billions of dollars thrown into the war on drugs and mental health treatment could be better managed and utilized if we give our system a real look at the successes and failures of our current system. Why not ask those seeking help both in past and present what they feel would help them? Why not survey the actual people going through their plight what they feel they need rather than relying on those at the top who aren’t knee deep into the viewpoints, feelings, and experiences of those seeking help? Wouldn’t their input be valid? Seems no different than those at the CDC seeking to put guidelines on opioid prescriptions for those with chronic pain without asking the very doctors and patients input from those who actually treat or have chronic pain. How could they possibly think that would be successful? You wouldn’t ask a plumber advice and guidance on electrical systems, right? How is this simple common sense lacking in our world today?

To be continued…

Another Conundrum:

There’s a medication that’s been around for decades. It’s meant to calm anxiety and panic attacks. You have a child with severe anxiety and panic attacks but no one wants to prescribe it because of that stigmatizing word again; addiction. So we’ll leave your child to suffer severe symptoms causing endless chaos to those around them, sucking the desire of life right out of him and anyone watching him suffer who’s obviously suffering with him because, he just might, become addicted… But we’ll shove other medicine down his throat that causes a lot of other side effects, symptoms and harm triggering even more anger, frustration, and now reluctance to see any doctor ever again or try a new drug intended to work more long term. And the system?? Well, it’s set for failure once again as there’s limited specialists available in the field of child psychiatry and often the wait is more than a year for someone to get seen and what’s a parent to do during that years wait while the anger is building and the symptoms go unaided causing so much more anxiety that he refuses to even see a counselor or leave the house or simply function…

And the services he has had, don’t even get me started there. A totally broken system.

Dying… One day at a time

I’ve been sick a long time. As I’ve navigated the medical system trying to solve all the pieces to the puzzle, I’ve been left adrift at sea, floating aimlessly towards the waterfall taking me over the edge and to the other side. Unfortunately, doctors don’t seem to see the waterfall in front of me.

My body is falling apart. I have so many health issues taking my body in different directions but one in particular is driving me downwards on this spiral towards death that I feel deep in my gut, my heart, and my mind and yet I don’t think the doctors and specialists have an inkling of how serious my condition is or even a true understanding of what I’m suffering. I can only feel it as I fight the system, begging them to figure out what is tearing my life apart.

It’s not my ME/CFS causing this spiral. It’s not my connective tissue tearing me apart. Fibro doesn’t escalate. In 2015, I began to experience body wide vibrations which feel akin to holding onto an electrical current that pulses through my body at various intensities. It’s not left me since it first began though at times it’s barely perceivable. It’s either an issue of the muscles or the nerves but not one answer has been forthcoming. At it’s strongest, it’s been felt by others in my thigh muscles, where it seems the strongest.

In addition, my legs became like jello with heavy weights and difficulty in moving them. That feeling is not as bad as it use to be and seems to have gotten better. I’m left with fatigued muscles and a perceived slight weakness in my legs. I developed weakness in my hands as well. Not terribly, but enough to notice as I drop things much more often and don’t seem to have as much strength as I use to. I had a tremor at that time which has since disappeared only to rear it’s ugly head every now and then. Shaking in my legs that are visible and annoying that comes on out of nowhere to simply disappear once again.

I do have something neurological plaguing me. My feet lack sensation. My legs and hands go numb or tingly and I’ve had burning sunburn feeling for months in my back, a warm liquid sensation down my legs, burning patches on my skin, cold ice sensations in the back of my head and random neurological symptoms that come and go out of nowhere. The pain is body-wide. The pain and fatigue rule my life like no other. Pain in my muscles, my joints, and what I can only explain as a raw nerve like pain which predominates in my lower back, hips and legs.

My gait changed on me several years ago. It’s like the signal in my mind did not match the signal in my body. My mind tried to walk at normal pace but my feet did not operate at that speed and I took a few falls. My legs don’t seem to want to take the fast large paces I’d been accustomed to as I now walk with a short slower shuffle. It’s odd. When I try to walk faster, I can trip over my feet. The pain in my hips, thighs and butt has been severely intense requiring around the clock pain meds in order to function. I can’t stand long nor walk far without the pain increasing.

I developed faciculations about two years ago. Predominately in my thighs and butt muscles. Last year around August, I started dropping weight. In addition, my butt muscles atrophied. They’re gone. My round bulbous fat booty is no longer. My skin sags off my backside and I’m flat and unsightly back there. The fasiculations continue. On occasion, they have moved to my mid spinal area on the left side. I developed pain there shortly after. My back muscles feel weak. My shoulders and neck are weak. It’s hard to sit or stand unsupported. I’ve not had many fasiculations in the upper body though recently started them in my right arm in the back with a single muscle that flared up in pain. Will I atrophy there next?

Back in 2015, I developed cognitive dysfunction. Words were coming out backwards, memory issues, and brain fog. I told my hubby something was wrong with my brain. They found lesions. Only three small lesions, two in the frontal lobe and one in the occipital lobe but tiny and nonspecific. No answers were forthcoming. Though my speech has gotten better, my voice box is not the same. My voice had become more horse and deeper than it had before around the same time as my memory issues hit. Recently, I’ve had a few minor episodes of losing my voice momentarily. I developed a cough around two years ago. I am a smoker so there’s that.

I suffer from internal spasms. Colon spasms, diaphragm spasms and esophageal spasms. I can choke on my own saliva. This too got worse a few years ago. It seems to come and go like a roller coaster ride but the difficulty in swallowing is more consistent, there are period where I can ignore it as well as periods where I can hardly eat. Last year, I started dropping weight. I lost over 15 pounds in a few short months and from then, 135, to now 110. I have difficulty with my appetite. I don’t often feel the sensation of hunger. My bowels don’t often feel the sensation to defecate though I feel it at the sphincter area, not in my abdomen. Sometimes eating causes pain and or nausea. It’s hard to eat much and I get full quickly.

I just recently had surgery both exploratory and a hysterectomy. The doctor found endometriosis and removed it along with adhesion’s on my liver which were removed. The shocking part, during exploratory, he watched as my bowels danced in front of him, on their own accord, something he’d never seen in his many many years as a doctor. Even under anesthesia, my bowels had a mind of their own and they spasmed over and over again. I can only be thankful this was seen so that I can get a write up to share with my gastrologist who has yet to dig deep into my digestive issues. I feel no one has really taken me seriously thus far. Symptoms of pseudo-obstruction or volovus which I’ve mentioned yet no scans were ordered for me..

My surgeon, upon meeting with me during recovery, immediately mentioned my need for a neurologist. I’ve seen three already…. He gave me a suggestion and I realized it’s one I’ve researched prior and tried to see but was denied a few years ago. Maybe now, with his recommendation and write up, she’ll accept my request. Will I finally get answers to the neurological part of my health issues that have plagued me for so long?

Is it one progressive condition or two separate conditions due to the length of symptoms over 20 years and recent seriousness or change over the last 4 to 5 years.. I don’t know. I do know I’m progressing. I feel my body dying and yet the doctors around me are oblivious of my plight until I’ve hit the anger stage and simply told them straight up, “I’m dying.” That’s a huge risk given how often we’re accused of being ‘hysterical’ “somatic symptom disorder’ or simply ‘overly anxious.’ But I’m simply done caring what they think of me mentally, something that bothered me greatly before. Now, I just want some damn answers. I need help. I AM DYING. The roller coaster ride has had a downward trend over the last several years and the progression is noticeable.

It’s fatiguing to talk. I can no longer sing without serious exhaustion. My body is tight and painful and never seems to truly relax. My thigh has spacisity. My butt is atrophic. My spasms persist. My inability to hold myself up without fatigue and pain has intensified. I’m uncomfortable in my own skin. I am in pain. I have lassitude.

The system is slow and uncaring. Prayerfully soon, I’ll get answers. Since surgery, I’ve had this insistent clicking/clunking in my sternum/chest area. My hubby can feel it and I can hear it. It’s bizarre! Is it my sternum due to my connective tissue disease or my mitral valve? Is it diaphragm spasms? The hiccups are constant but an issue I’ve had for a while now. The clicking is new. I’ll mention it to my doctor during my follow up. Just another annoying symptom to add to the list of many. Will I get answers? Will I ever know what ails me? I’m starting to think I won’t….

My Battery’s Broken, Please Understand..

Many have heard of the spoon theory analogy for our chronic illnesses, but when I think of how to describe my illness, a broken cell phone battery comes to mind.

On a really good day, it charges most of the way up but typically it’s less than half way full. Simply using the phone, eats the battery up quickly and it takes forever to charge up again.

On top of that, the charger has some exposed wires that causes shocks and jolts of pain if I’m not super careful when using it. My apps are slow and sometimes they don’t work. I can’t rely on using them.

I feel that my pain and exhaustion is not understood fully. It hurts to get up, it’s exhausting and painful to stand and every little bit of energy I store up, I would like to use for myself to catch up on the long list of things waiting on me. Every time I help someone, I’m using up what little battery that I have and so it puts pressure on me and makes me angry because that’s one less thing I can do for myself.

I use to be the rock, the one everyone looked to to help them out. Now I’m the one that needs that help and yet I’m still being looked at as that rock and they fail to see that it’s been broken into little pieces. No matter how many time I try to explain this, how many times I’ve broken this down, it seems to go through one ear and out the next as I’m looked at expectantly, once again, to attend to even simple little tasks that can be handled themselves.

Talking is exhausting! It’s actually easier on me to type than to have a conversation. I’m not mad at you, ignoring you, or even rude. It simply exhausts me to carry on a conversation and try to pay attention to what is said to me. Please keep it short! When you drag on while telling a story, inside I’m bouncing up and down screaming hurry up and get to the point!!

I’m not trying to be rude, I just can’t pay attention that long and I’m feeling restless and just want to go lay back down. And when you cut me off to ‘hurry up and say something before you forget,’ you’ve just made me forget what I was trying to say in the first place.

Yes, there are days that I can carry on a conversation and feel normal for a while but please pay attention to the signs! If not, don’t be upset when I tell you I’m not feeling chatty at the moment. My processor is running slow right now and my fatigue and pain are at the forefront of my mind.

I HATE to cut someone off and make them feel unimportant or that I don’t care or want to hear you. I also want to be heard and know that you KNOW ME and can see when I’m tired and distracted and not feeling up to being warm and cozy at the moment. Understanding this shows that you truly understand ME and that you care about how I’m feeling.

If you know that I’m ill and you tell me that you don’t want to put any more work on my shoulders because you understand, then please clean up after yourself and not leave a HUGE pile of stuff for me to clean up after you when you leave. That’s really really insulting. (still holding a grudge).

Every little thing you can do to help me, truly helps me. Even the simple things. I do notice, you don’t have to point it out to me. I’m sorry I’m not vocal in praising you all the time.

I know it doesn’t seem like a big deal to you, but when you want something done, please don’t expect me to do it for you especially if it’s not even my task and it’s something you can do yourself.

If your doing a task so I don’t have to, please don’t have me walk you through each little step. At this point, I might as well have done it myself. It cost me energy and takes off one of my own tasks on my list when I have to get up and stand there and speak and use my brain. I wish you understood this!

Living with a broken battery is tough enough. Add cracks, exposed wires, faulty apps, and that’s my life with a chronic illness. I rather it not be but that’s the cards I was dealt so I have to make the best of it and pace and get help and worry only about the big things while trying not to sweat the small ones.

Every little thing you take off my plate, helps me. Every little task you add to my plate takes a little more of the remaining battery life I have left for the day. Please think about this before seeking my help especially if it’s something you truly can do yourself.

Please be mindful that I might not be chatty and talking does take a big chunk of my energy bank. Keep it simple and to the point unless you know I’m having a good day and am engaging with you. Please pay attention to those signs which shows me you listen and you care. Living with a chronic illness is a daily struggle, it’s not something we can just get over or plan for.

The Talking Head..

Many years ago, when my health was a beautiful thing, energy abound, optimistic in life, my future ahead of me, I sat at a pond on my dad’s property, late at night smoking a joint with a dear family member. We had a case of the giggles talking and laughing till we were out of breath. I remember distinctly hearing my family member joke that he was a talking head. That name stuck with me.

As illness took hold of his body, later in life, that night often floating through my mind and I wondered if these were prophetic words of what was to come. In the end, it was me. It was me that became ‘the talking head’ as ME/CFS and other illnesses ravished my body and left me on my back watching life pass me by as I was sucked into the abyss of chronic pain and fatigue. Weighted down by the forces of gravity like sand bags attached to each limb, limiting my ability to function…

Letter to Pain Management

I don’t know how to articulate my feelings and experiences in the small amount of time that we’re allotted.  I wish I could take you home for a few days to see exactly what my life is like and what I go through. It’s not obvious in a half hour appointment where I’m simply sitting there and chatting. It can’t even scratch the surface.

A recent blog post of mine:

I’m tired of dying every day and being uncomfortable in my own skin. Of watching the light fade from my children’s eyes as another mention of “not right now” whispers through their ears and the ensuing frustration and defeat that washes upon their faces… my kids need me now. My hubby needs me now. My mother needs me now. My family needs me now. Tomorrow might not get here and time flies, moments pass, needs go unfulfilled looking for outlets and something to fill the void from avenues best left discarded.

I remember those times. My children are there now and yet I’m here, I see, I know, but I’m not present and I see this being fulfilled while my body falls apart and my mind wants to spiral. To be so dependent on a stinking little pill to wash away the pain and fatigue yet such controversy on something so tiny that gives me life in a way few will understand. No high needed or received, just relief, blessed relief from the torture my body inflicts upon me. Some days, not near enough, leaving me so despondent, I rather wither away and free my family from the burden I feel I’ve become.

The negative thoughts and heavy weights weighing them down like a chain around their necks in a sinking ship lost at sea. To free them. To free myself. To put an end to the drain on this life and allow healing to begin and forward movement on their own journeys this life will bring. May they never be saddled with these illnesses that grip me so tightly, squeezing the life out of me. But it’s heritable. It’s the gift that never seems to end. One generation to the next. My burden, my cross to bear laid upon the shoulders of my tender children and the guilt that consumes me because of it. My fault.

So, I have a heritable connective tissue disease.  Not a drug seeker, an overly anxious pans positive female, somatic symptom disorder, attention seeker, no, I have a disease. I’m an actual Zebra amongst horses with a rare disease that finally explains all of the health issues I battle. 19 years of wondering what’s wrong and 12 years wasted when a prior doctor recognized the connective tissue disease, documented it in my record, but never told me and never sent me for further testing to finally put to the bed what ails me. I could have avoided so much misunderstanding, so much frustration, not knowing what truly is causing all the health issues I’ve been fighting.

It’s frustrating that my life revolves around a little pill. But that pill works so well, when at the right dose, that it gives me a few hours of my life back and my ability to tend to my household, my kids, my family. I can’t remember the last time I cooked dinner as I have terrible lassitude and am usually done for the day by 2 to 4pm.

Researching Ehlers-Danlos (the probably type I have), it can indeed lead to severe pain and that pain can be for life as it’s progressive and gets worse over time. It’s only symptom management as there is no cure and no treatment to make it better. I’m still trying to wrap my head around this as I’ve always had hope that one day, I will reach remission. One day, I’ll have my life back for a little while, but these last 5 years and finding out what truly is going on has shown me otherwise so I’ve been stripped of that hope of remission and I’m not sure I can handle that if that I don’t have relief from the pain and fatigue that weighs me down and runs my life. It is severe. I look so normal and so well, but inside, I’m falling apart and crippled in pain. I’m on my butt or back 95% of the time.

Occasionally, I get a good day. It’s happened only one time this entire year. I played catch up and worked on my garden, a task I’ve always taken delight in. Oh how badly I’m paying for that day. That’s my life.

I cleaned part of my bathroom the other day and paid for 3 days from simply cleaning my mirror, counter, toilet and tub. A task often neglected until my hubby can get to it or my daughter surprises me and cleans it for me. Summer is always better on my pain symptoms but much worse on my POTS symptoms but 6 months out of the year has been the most miserable years of my life and I’m not sure I can handle another winter without the pain relief. It’s hard to hold on to life when my quality of living is in the toilet and the pain consumes me. I know the market is volatile right now. There are groups out there fighting for us. Fighting for our rights as chronic pain patients to live as comfortably as possible while struggling with chronic pain. I’ve exhausted my options and found what works best for me on multiple levels as it helps my IBS-D, bladder, pain AND fatigue. I really am the rare patient when a pain med, which makes others sleepy, actually helps my fatigue and gives me some energy to keep on pushing through. I’ve been at the same dose for a long time now. I haven’t built a tolerance, but my pain has gotten worse. This is my life and all that I have to look forward to. I need to know that my pain can be managed. That I can be as comfortable as possible at least while my kids are young and need me now.

I’ve read that, as a palliate care patient, writing “palliate care” on the prescription should exempt a patient from the ‘recommendations’ given by the CDC. Hopefully soon that will change for all pain patients as we should never have to live in severe pain without relief when there are medications for this very thing. I just wanted to share what is hard for me to articulate in person. This is my life. 

My VA Surgery Nightmare; no wonder people get medical PTSD.

2017 VA Hospital

                                      My VA surgery nightmare

In February of 2017, I went to the VA to have surgery. This was my first-time having surgery at the Boise VA. Two procedures were being done. I was having a bladder hydrodistallation with a DMSO treatment with my urologist and having a Bartholin gland extraction.  Funny thing is, that Bartholin gland was supposed to have been removed many years ago (at military hospital) but when the pathology report came in, no gland was removed, only fatty and muscular tissue. That was a waste of my time and needless surgery/recovery as once again, the gland swelled back up and needed out.

I had no issue with either my urologist or gynecologist. They seemed knowledgeable and reputable. I went in the morning of my surgery and all was going well. The nursing staff at check in were great.  The anesthesiologist on the other hand, was a real piece of work. He was extremely standoffish and rude and made some kind of off hand comment to me that I can’t remember now but it was rude. My husband took note as well, so it wasn’t just me and he’s pretty giving.  So, under I go for my surgery to awake to a nightmare.

I woke up in extreme pain. What I want to make you aware of, is that I suffer chronic pain due to multiple medical conditions for which I’m on pain medications daily for. I know pain. I also know I’m slow to heal and have poor pain control after surgery, which has nothing to do with being on opioids but likely due to a connective tissue disease and having ME/CFS. This level of pain that I awoke to was beyond everyone of my prior experiences, including my abdominal surgeries. I’ve had about 8 surgeries and a handful of surgical procedures in the last 19 years so I know how my body responds. And yay me, more to come.

I found out my surgery was a bit tougher than they realized and I needed stitches four layers deep. The gland was deeply embedded. The only way I can describe my pain is, being on pain meds daily then getting cut open and having someone give you an injection of Narcan (I think this is the drug), eliminating any pain meds in my system. My entire body was flared up in pain and my nether regions were over a 10. The pain was so intense, I was speechless, gasping and frozen. The nurse was made aware of my extreme level of pain and went searching for the anesthesiologist. It seemed like hours, when in reality it was probably an hour which is unacceptable to me, but he finally showed up and said he was putting fentanyl in my IV line.  Again, no response. No decrease of pain, no edge taken off, nothing. Looking back, I seriously question whether or not I truly was given Narcan or whether or not someone at the VA (maybe the anesthesiologist) was skimming the pain meds. I know that’s a serious allegation (and a problem in healthcare), but I stand by the fact that something truly was going on. This was not a typical reaction for me and I’ve had multiple surgeries in my life.

I was hurting so damn bad that I refused to allow my hubby to come back to the recovery room when they offered to get him. I was actually terrified of his reaction if he saw me in that much pain. He can feel pretty helpless when I’m suffering and not seeing anyone helping me might set him off in ways I didn’t want to handle in those moments. I do have to say, the nurse accompanying me, was the absolute best nurse ever. He held my hand, whispered to me, comforted me, and felt absolutely terrible seeing me suffering. But his hands were tied. He saw them inject meds into my line and he did ask for more relief but no one wanted to order it. That man stayed by my side to comfort me until I moved off his floor. I truly need to look up his name and leave awesome reviews everywhere I can.

They ended up admitting me to the hospital overnight for pain control. This is typical for my abdominal surgeries, but not for this type of procedure. Having experienced multiple surgeries before, this level of pain was so much more intense than any I’ve ever experienced.

Another thing I noticed was bilateral abrasions on the back of my elbows, with the left side being pretty big. Again, I’ve had multiple surgeries and never in my life have I woken up to abrasions. How the hell did I get injured while put under???  They are supposed to treat my body with respect!! I counted on them to take care of me. How am I ever supposed to trust someone when I’m that helpless after going through an experience like this? They broke my trust. And it gets worse!!

I was put in a room and my husband finally came up to be with me. This was SIX hours after surgery. My husband was apparently very upset and had been left freaked out wondering why I wouldn’t let him with me. I regret that. At this point the medical staff set me up with a diluadid drip. I could push the button every ten minutes for pain relief. Apparently, it was set for 4mg(?) every four hours AFTER I complained that the 2mg was doing absolutely nothing.That was the only adjustment I received the entire time. On top of this, they did NOT give me my daily dosage of oxycodone to take by mouth or in my IV line.  This is some serious under medicating. If that were it alone, that’s bad enough. But I was not receiving any relief from my pain. And I’m in the hospital!!  I complained about this EVERY SINGLE TIME someone came into my room in addition to pushing the call button many times. My night was hell. I spent every ten minutes desperately pushing a button that entire night and not a damn bit of relief was given.  Not a wink of sleep.

I also needed help to the bathroom and no one came as it was excruciating to stand. My husband handled it while he was there but after he left I didn’t have help and I had to unhook myself and stumble over stuff to go relieve myself. My blinds were also left open after dark and I couldn’t reach to shut them and again, no one came to help me. I laid there, awake, the entire miserable night of hell. Not once did someone up my pain meds beyond the daytime increase to the 4mg (?) every four hours via those tiny doses in the that machine. I asked them flat out to call the doctor and to request more pain relief. By the way, I can’t take NSAIDS or aspirin so my options are limited. Rare metabolic mutation, fun times.  They offered me a Tylenol.

It wasn’t until the next day that things fell into place. I demanded to be released. I felt with my pain meds at home, I could, at this point, better medicate myself and control my pain, as I had my additional script ready via my PM doctor. I was fed up. Upon getting ready to discharge me and again making my complaints, they disconnected my pain pump and examined the machine. They also took out the entire bag of diluadid from the pump and commented, “We’re going to have to throw away this bag, looks like the pain pump was broken.”  I cannot describe to you the rage I felt in that moment. After they looked at my machine multiple times during the night, endless complaints of no pain relief, it took till me leaving to discover my pump was broken?

Again, I wonder about the authenticity of the over night staff. It’s not like they didn’t look at the machine on their visits with me. But they’d throw an entire bag of pain meds away? How do you not see that a machine is not working? Why didn’t they give me my normal meds in addition to the added relief from surgery? Why did they NOT call the on-call doctor like I asked them to get more pain relief? And how the hell did I get abrasions while sedated?! All of these little details and questions ran through my head over and over after I finally recovered.  And yes, I filed a complaint with patient advocate. Wait, let’s back that up, I called patient advocate and left two messages. Not one was returned to me. I left a review on the website and no one reached out. I spoke to my surgeon about this at my follow up and he notated it my complaint but nothing was done!

I requested copies of that night for my records. On top of all I went through, I was appalled to see multiple lies within my chart. “Sitting comfortably reading a book.” “Didn’t need assistance to the bathroom.” “Pain level of 4.” On and on they did NOT document my constant complaints. They did NOT call the doctor.  The did NOT take care of their patient who put their trust and life into their hands. They simply lazily wrote their notes to cover their shift but did not accurately reflect the truth. IF I was sitting at a Four level pain, why the hell did I complain the ENTIRE NIGHT?!!  If my pain pump was broken and I wasn’t getting my normal meds, HOW THE HELL COULD I BE AT A FOUR LEVEL PAIN at any point during my stay??!!  LIES. 

I will NEVER allow the Boise VA to put me under again. I will never trust them with my body or with my life. They never accounted for the abrasions, nor was it mentioned in my records after asking them about it. I was completely dismissed and disregarded at a very sensitive and painful time in my life.  And people wonder how patients get medical PTSD? This is exactly how. One of many ways as we are often dismissed as females with hysteria, anxiety, overly anxious, somatic symptom disorder, and more especially when battling chronic health issues.

To me, this was medical negligence. I’d also investigate the pain medication accounts and see if someone might be skimming the meds. This treatment was devastating to me and I have extreme anxiety over it. Sad thing is, I have more surgeries in my future, one very soon, and now they can add a heavy dose of anxiety meds to the list before hand and expect a serious discussion on pain relief BEFORE I ever step foot in a hospital for surgery ever again. This should have never happened.  This also should never have been ignored when I complained not just about the lack of pain relief, but broken equipment being used, abrasions to a patient’s body while unconscious, and LIES in a veteran’s medical records during that night of hell because after all, the machine was BROKEN. Should be proof enough that someone dropped the ball and someone fudged those records.

                                                                                                Dianne MacKay 8/26/19

Right To Pain Relief- We’re Not ‘One Size Fits All’

My ‘good day’ at the fair!

FairPhotoMe1

I live with chronic pain. Intractable debilitating chronic pain. I have a disease that has no cure and no medication tailored to treat it. That means symptom management. Med’s for the sleep issues it causes, meds for the stomach issues it causes, meds for the muscle spasms, meds for my bladder, braces to support my joints, ice packs, heat pads, yes, essential oils, supplements, mobility devices and pain medication. Heck, I even bought a hot tub.

This disease has progression which means, over time, I will get worse.
I’m fortunate, with the current climate going on, that I have pain meds. But all the propaganda, and yes, it’s propaganda when lies are told, is destroying my RIGHT to treatment. Agencies are creating guidelines for which to treat and how to treat and yet where are the representatives on these panels for patients with chronic pain? We’re an entire class of patients who depend on the medications to function but we’re not truly represented. How can you have a panel of people create guidelines for everyone without having a representative for those who suffer? Not only should we have representation but also a handful of patients with experience and history on these medications to speak out on our behalf. We matter too.


Putting dosage limits harm patients. Why? Its not ‘one size fits all’ and that approach assumes that it is. Would there ever be dosage limits on SSRI’s, cholesterol medications, insulin, diuretics, ect? NO. They are all tailored to a patients unique needs. In my case, I have a high drug tolerance to certain medications as well as a fast metabolism for those same meds. That means I started out on a higher dose at much more frequent intervals. I’m being punished for how my body processes these medications. Of course, I’ve tried other options and have other methods that I utilize to help with my pain. But often, this is not enough.


I’ve been on the same stable dosage for years without escalating them. In the guidelines, it mentions CPP (Chronic Pain Patients) will be identified by those who have a stable dosage without escalation whereas addicts will doctor hop and have frequent escalation of meds. This is a problem. Often, we are misunderstood by doctors, discover we’re not the right fit, denied treatment, differences of opinions and other reasons for seeking out different doctors UNTIL we find the right fit. I went through two prior pain management doctors before finding the one for me. Am I a doctor hopper? Guidelines would suggest so. With so many doctors paying the price for the crack down on opioids, due largely to illegal street drug usage, many doctors are denying treatment and refuse to help patients in pain. This means, a whole other referral, another long wait for a new doctor and no care until we find someone who will treat us. This ‘looks’ like doctor shopping but I assure you it’s not. The guidelines need to change to reflect this.


Escalation of dosages and addict’s vs CPPs; It’s not uncommon for CPPs to need surgery for issues that arise, which means, more pain medication. It’s also not uncommon for some of us to need a dose titration upwards to relieve our pain. Guess what? Some of us progress. Some of do build a tolerance to the medication just like any other medication. So, in these cases, escalation would be appropriate just like SSRI’s are increased when symptom management is no longer managed. Yet, the guidelines only show dose escalation as an addict’s response. This is entirely false and harmful to CPPs.


I have bone inflammation in addition to many other painful conditions I suffer with. Imagine feeling your bones trying to expand when they’re not meant to do so. This is extremely painful. Walking and standing make this unbearable and contribute to the increase in pain. My condition has progressed. I have MRI’s to prove this. My pelvis feels absolutely shattered. Imagine trying to walk, sit and even lay down with pain this intense. And yet, I have to grit and bear it because my pain medication dosage is at the top of the ‘recommended’ limit. Instead, I was given testosterone cream…. Still waiting for relief.


It’s extremely terrifying knowing my condition will continue to progress and I will continue to deteriorate with very little possibility of added pain relief. I have NOT become tolerant of my medication. I only know this due to being on bed rest for over four months and having my symptoms abate enough to be mostly managed by my current dosage. But with activity, comes pain. That means trying to maintain my household along with a special needs kid, who also is showing my health symptoms, is not manageable. The longer I’m upright, the more my pain increases until I’m back on back and waiting for the flare up to calm back down. Vicious cycle my life has become. I can not function normally at the level of pain medication that I am at currently. I’ve also already learned that, even with pain relief, I MUST take it easy so as not to flare it up so badly that my body progresses much faster than I can handle. So what are my options?


I’ve already determined that at the right dosage, my medication WORKS. Not only does it help my pain but a bonus, my fatigue as well. Who knew? It also helps my IBS-D and other issues I suffer with. Too bad it doesn’t help with my sleep. They don’t make me sleepy or ‘high’ as many seem to think.


So how do we address patients like me? Where are the ‘guidelines’ for CPPs who DO need dose escalation? Who DO need higher than a set dosage limit when their body is different and can handle so much more? Again, we’re not ‘one size fits all.’ This is a medication just like any other. Addicts will abuse whatever they can get their hands on but why should patients pay the price for someone else’s transgressions? Any drug can be abused. We simply cannot control any and every product known to man that can be abused by some person or another. We cannot force people in pain to simply deal with their pain when other options have failed to address it.


Can you imagine having your child say to you, “I miss my old mommy, I want my mommy back.” “I want you to spend more time with me.” “You never do anything with me.” “It’s always no.” “You never feel good.” My son is older and deals with health issues himself so he understands. My daughter had a small part of my life before my flare up became disabling on an every day basis. She had pieces of me and moments with me that we actually together, spending quality time and simply being ‘mother and daughter’ as it should be. She was in kindergarten by the time I was crippled with everyday pain, unable to function like a normal human being. She didn’t get the school field trips with her mother, the volunteering in her classroom, the family events, like my son did.

My son was lucky. I may have battled issues chronically and out a few times a week, but I had normal days too. There was so much less canceling of events due to the unpredictability of my health. Now, I simply cannot plan at all.  And for every good day I have that equals between three to six bad days to make up for it. So if I have two good days in a row, I’m laid up for a long while. That’s just for my ME/CFS. That doesn’t include my flare ups of bone inflammation that to this day, is untreated and undiagnosed beyond the radiology report of progressed unusual pattern of patchy inflammation.  That pain will knock me down and wipe for out for weeks on end.  I’m slowing learning my patterns and triggers. Day by day, moment by moment. Existing, but not living.


In a perfect world, I would have access to pain meds at whatever level is needed to function as close to normal as possible. Higher dosages during the flare ups and normal dosages during manageable times. I would have control over what I NEEDED and not have to worry about suffering through intense pain for weeks on end. It’s all about personal accountability. Personal responsibility. Instead, I have someone else who controls my life, who doesn’t live with the pain that I live with. Someone who will never truly understand my lack of functioning or I would never have to suffer in the way in which I do.

People are allowed to buy NSAIDs and Tylenol and dose as needed. Why can’t I have control over my own meds to do the same? Did you know I can get high off Tylenol? Weird, right? So many substances out there that a person can get high on. If they want to get high, they’ll find a way. So why should I suffer for other people’s irresponsibility? Isn’t it innocent until proven guilty? Unless I’ve personally given cause why should I be drug tested and treated like a criminal and beg for relief, only to be denied. Why should other people have that much control over my own life when they do not live in my shoes? And I am not trying to knock drug addicts, knowing that they’re battling their own issues.


Never would I have ever agreed with the idea to just legalize all drugs. But having lived with the amount of pain that I do, on a daily basis, and seeing the control that agencies want to have over me, it makes sense to me now. I support that idea. It’s worked for other countries. Just provide more rehab facilities, mental health facilities and get rid of the stigma that surrounds mental health patients and drug addicts.

Those are things we need to be doing, not concerning ourselves with controlling a drug and denying true access to those who need it. No, I am not an addict. No, I do not abuse my meds. But I do understand why patients are turning to illegal ones. I get it now. I haven’t done that but I do understand it wholeheartedly.  It certainly changes your perspective on things, when you live with chronic pain and others completely controlling your life as if you’re a criminal and guilty of some crime, denying relief when needed and taking away my right to live and function in a way in which I need.


We need change. The current system is not working and we’re repeating the same mistakes over and over again. Maybe they didn’t realize how big of a push back they would get when they decided to demonize a drug that provides relief to so many. Why the lies in the first place? Why not raise awareness about the true statistics such as illicit fentanyl and other illicit drugs that are taking lives due to the lack of regulations and buying off the black market. Why add prescription medications into the numbers as a blanket statement instead of actually breaking down the numbers showing illicit drug use deaths and overdoses vs legitimate prescription opioid patients’ death and overdoses? Wouldn’t this highlight the true dangers of street drugs rather than scare half the country about a prescription drug so many are too afraid to use if it needed and doctors are too afraid to prescribe?

We’ve become demonized for using a medication that truly works and truly helps those in need. Talk to anyone who doesn’t use opioids (legally) and they’ll have a horror story about some relative that died or overdosed on illicit drugs failing to understand the difference between a regulated safe prescription when taken as directed vs buying an illegal drug off the street.  All because of the hysteria created by the media and politicians siting incomplete facts and half truths. Maybe they’re ashamed of the truth. Stop the stigma.

And what about the suicides? Why is the media staying silent on this issue? Chronic severe pain can cause major mental health issues and when you’re suffering without relief that drives up the rate of depression and anxiety and worst of all, suicide. People being force tapered and denied treatment are turning to other options. It’s actually driving up the rate of illegal drug use. It’s also driving up that rate of suicide, a problem already too big for our nation.  Where is the outrage? Where is the advocacy?

In addition, many of our veterans are taking the brunt of this treatment.   They were some of the first to be force tapered and dropped as chronic pain patients. I know, because I’m a veteran and it’s been the talk in our groups for a while now.  We suffer with a high rate of chronic pain due to the exposures our men and women face in service. We voluntarily put our lives on the line to protect and defend our country and this is how we’re treated in return?


Imagine if Insulin were in the spot light. Insulin can kill a patient, especially if they don’t have need for it or taken at the wrong dosage. Just recently, a doctor working at a VA hospital was using Insulin to kill patients. Should we ban Insulin? Should we force patients to go to a facility several times a day to have their medication monitored and administered? Imagine the outrage if Insulin were in the spot light and patients were forced to jump through hoops to get the drug they needed to function. Imagine if they were demonized for using this drug that can, in fact, kill. Imagine if they were treated like they were dirty for simply using that drug to function. That’s how, many of us CPPs are being left to feel; dirty.


Why are we not suing the makers of SSRI’s for the dangers associated with those drugs? No one told me the hell I would go through when tapering off of them. They too are given for chronic pain, off label. Certainly didn’t help me. We don’t talk about how dependent a person becomes on those drugs. No different from opioids taken as prescribed. We all become dependent on any drug taken long term. Period. So where are the lawsuits for targeting doctors and people with all the commercials catered to their products? For all the samples and sales pitches to the medical system. The payouts and perks when an office markets those drugs to patients, where is the outcry for this?


How many suicides due to SSRI’s, serotonin syndrome, deaths, personality changes, ect? How many children harmed? The list is endless but it’s not SSRI’s in the spot light. It’s opioids. Why? That’s a good question. This should never have had any effect on patients taking prescription drugs as prescribed. This should never have had any impact on people who need legal opioids for pain. Yes, there were pill mills. They’re being addressed. Yes, some may have been prescribing opioids too easily without exhausting other options. But this too, has been addressed years ago.

As a patient suffering with debilitating chronic pain that will worsen over time, I’m left without options. I’m harmed by the regulations in place that don’t address the real problem and assume patients are ‘one size fits all.’ I am a fast metabolizer and have a high tolerance for pain meds. I’ve exhausted other options and though I metabolize these medications quickly, they work and work well at the right dosage. Patients need the right to escalate their dosage as needed. Patients need the right to ‘doctor shop’ to find the right fit after dealing with a system of doctors who are refusing patient care. And I’m not trying to blame all doctors. Many are just as fed up as we are.  We need to address those issues. We need to quit assuming patients are guilty and treating them like criminals for simply needing a drug that helps them function. This is wrong on so many levels.

We need to allow patients the right to access medications with personal responsibility. Just like a patient having access to NSAIDS, which are also dangerous, we need the right to have the amount needed as needed to address our pain. Ultimately, it’s our body and our responsibility. I have no problems signing a contract taking that responsibility onto myself. I should have the right to be in control of what I need when I need it. I’m not an addict so don’t treat me like one.

I jump through hoops to get my medication. I’m treated like a junky at pharmacies, ER’s and by people who believe in the stigma that our media and government has helped produce. This is a public nuisance to us CPPs. So where is our law suit?