Opioid Restrictions Are Nothing More Than Security Theater

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Anyone who has ever flown post 9/11 has had to undergo increasingly invasive TSA searches, and yet we put up with it. In part, because we can’t fly if we don’t, but also it makes many people feel safe. It’s seen as a necessary inconvenience. It doesn’t matter that most terrorism is stopped by behind-the-scenes counter-terrorism by various agencies than privacy-invading body scans. However, the public can’t see or know about every instance prevented, hence the need for my increased visible security whether it helps or not.

Photo by Rayner Simpson on Unsplash – [ID: Back of a man in a yellow security vest and 3 shoppers in the background]

To be fair, there’s something to be said for using a fake camera to discourage theft in a store, but it’s another to put people through dehumanizing screening when the process may be more costly, inconvenient, or even deadlier than any perceived benefit. The TSA airport screening has been often criticized as security theater that guzzles up money and even increases car accident deaths as people choose to fly less to avoid screenings.

The restrictions created by the 2016 CDC Opioid Guidelines are also a form of security theater. It seems obvious to many that if people are killing themselves accidentally with opioids, why not make it harder to get? If it were that simple, prohibition would have stopped alcohol consumption.

When it comes to addictive substances there is always a black market. The restrictions put in place didn’t stop addiction, it just changed where people get their drugs. Don’t get me wrong, it’s good to stop doctors who are intentionally profiting off addiction. I won’t pretend doctors like that don’t exist, but if the goal is to reduce overdoses then only focusing on legal prescriptions is like putting your finger in a hole in the dam and ignoring the larger gaping hole next to you. CDC data shows a decrease in prescription-related deaths while overdose deaths continue to rise due to illicit fentanyl.

Restricting addictive substances through legal means is easy. Actually trying to combat addiction and its root causes is much harder. We don’t have all the answers to addiction, but one thing is clear, making it harder for pain patients to access their beneficial opioid medications is not helping addicts and is devastating pain patients. Not only does the death toll of overdoses continue to rise, but many pain patients have committed suicide. Why would we continue a policy that doesn’t stop overdoses and causes more pain, suffering, and death?

Pain patients and addicts deserve better than to be collateral in this security theater that lets politicians and the CDC pat themselves on the back without actually solving the problem.

The Calculus of Pain

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I’ve often marveled at the typical pain reliever commercials on tv these days. Whether it’s pills, cream, or braces they all tell you how you can feel better and do whatever you want. You’ll see Shaq promoting Icy Hot and playing basketball, or Voltaren showing an old man dancing like he’s twenty. I’ve often wondered, for how many people does this work? I already know nothing I take, except opioids, can help me get up and go. But even then, it’s limited and short-lived.

Photo by Anh Nguyen on Unsplash [ID: Woman at table with a mug, hand to her head in pain]

When my mom talks about how taking two pills of Aleve can help her deal with arthritis, I know I’m living in a different reality than she is. In her reality, her pain meds aren’t demonized, and over-the-counter medicines actually work. Meanwhile, over on my planet, everything I do potentially leads to more pain and I worry every month if my pharmacy will decide to just not fill my medication. I’m lucky and grateful I have access to my medication, but is not treated like other prescriptions, which is incredibly frustrating.

In fact, the more I thought of it the more I realized how people don’t understand that for some people pain dominates every aspect of our life. To start, we must make sure we track our prescriptions and pills, making sure we have enough to deal with flares and high activity days without running short before my next refill. Then I have to decide what activities I can do for a day and how much can I push myself. Do I have enough energy for these tasks? Will a certain task cause a pain flare and ruin the plans I have the next day? What are things I can do to minimize the inevitable pain a task will cause? How much time do I need to recover? Will the people in my life be understanding when I have to cancel because of pain? It’s like a daily calculus I never wanted to learn in the first place.

There is a well-known essay that put forth The Spoon Theory, which helped to explain the energy rationing disabled people often have to deal with. The essay used spoons as a visual for your energy for the day and removed them for even the simplest tasks like brushing your teeth and cooking. Little actions that abled people can do without a second thought are often huge mountains for disabled people to overcome. This is partially what I’m talking about. Energy rationing is not that much different from pain rationing, I just think there’s an extra level of complications thanks to opioid stigma. Deciding when you get to take an extra pain pill for high levels of pain may mean you don’t have that pill for a flare down the road that is even worse. Someone who takes Advil for pain doesn’t have to worry about making the pills last because of arbitrary restrictions.

There’s no world in which dealing with severe chronic pain is simple, but it could be simpler. We can stop stigmatizing pain and making pain patients jump through hoops to get necessary and beneficial pain medication. In some places, pain patients can’t even get a month’s worth of opioid medication in a desperate attempt to stop pill diversion. Focusing on asinine rules like this will never stop a crisis that is driven largely by illegal drugs.

I know those of you reading this can’t change this problem. However, I can tell you one thing that can make a difference: checking in on the disabled people in your life and doing your best to accommodate their needs so they can take part in social events and enjoy going out. You will never know the scope of decisions someone has to make to deal with pain, but you can do your best to try and make these choices a little easier.

Recent JAMA Study Shows Forced Tapering Caused Pain Patients to Use Illicit Drugs.

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Another conclusion of the Journal of the American Medical Association (JAMA) study, published earlier this month, showed that forced tapering triggered more mental health crises and overdoses. I hear this and can’t help but remember how many times — since the 2016 Opioid CDC Guidelines were published — I said this would be the outcome.

Photo by James Yarema on Unsplash – [ID: Prescription bottle with pills spilling out.]

I suffered from the first waves of opioid cuts and tapering. I was denied opioids despite suffering from severe back pain that was eventually diagnosed as degenerative disk disease. At the time, I turned to marijuana, which is approved for medical use in my state. It wasn’t enough, and I considered seeking out black-market opioids. Fortunately, I was given access to opioid medications after a few months and did not have to go down that road.

When you’re disabled you often have a lot of doctor appointments, and when the 2016 CDC Guidelines were first announced I couldn’t help but comment on it. I said that the guidelines will drive more pain patients to illicit drugs. Some agreed; some didn’t discuss it; and one nurse said, “I hadn’t thought of it like that.” That response was the most frustrating of all. Shouldn’t a nurse know that taking someone off a medication based on a guideline and not their health means these patients’ need for pain relief has not abated? They’ve been stripped of a pain regimen that helped them live their life with less pain; yoga won’t help. Many will continue to want the same level of pain relief — as they should — and yet access has been extremely limited.

Furthermore, being in pain is in and of itself a mental health crisis. If you do not suffer from chronic or constant pain, you can’t know how changing and life-altering it is. It seems to me that without question, reducing one’s pain medication inevitably leads to more crises.

In a world that likes to assume anyone seeking help is just “crying wolf”, so many find it easy to deny people pain relief. Especially by labeling us as drug-seekers, as if they can easily and objectively distinguish between people in desperate need of high-level pain relief and someone acting for a high. I’ve personally been kicked out of a hospital and called a drug-seeker because the nurses and doctors thought my actions, due to pain, were drug seeking. Pain patients that don’t fit a perfect mold are often labeled drug seekers just because they asked for an opioid that they have used before, safely and effectively.

While the study is small and limited in scope, I feel it vindicates something I have said for five years now. I don’t doubt further studies and analyses will continue to show a similar result. I believe addicts deserve help, but this study shows me that society’s current attitudes towards addiction and opioids are killing addicts and chronic pain patients alike.

The CDC has claimed they will be updating their 2016 guidelines, but for better or for worst? They lost my trust a long time ago.

Call to Action: Support the Supplemental Security Income Restoration Act!

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Supplemental Security Income (SSI) is a government program for disabled and elderly citizens. Unfortunately, it has not been updated since 1989 – I was a four-year-old at the time. As it stands, the current system keeps recipients below the poverty line with insufficient income and strict rules not allowing recipients to save more than two thousand dollars. Many disabled SSI recipients cannot marry without losing their benefits, meaning the United States of America is still not a land of marriage equality.

Fortunately, there is a chance to change things with the new SSI Restoration Act. Fix Supplemental Security Income in 2021 is a new website that can help you take action. It is full with information all about this bill, as well as an easy-to-use tool that helps you email your representatives in a few easy clicks. There is also a phone option, but for disabled people like me who struggle with using phones, the email option could not be easier. It helps you find your representative and includes a script so you don’t have to write anything of your own if you don’t want to.

So please, head over to fixssi.com and take action!

Welcome To the #PainKills Project Blog and Website

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I used to love this show on the SyFy channel called Farscape back when I was a teen in high school. There is an episode where the crew finds out their pilot, also named Pilot, is joined incorrectly to their living ship called a leviathan. Antagonists in the character’s past wanted to rush replacing a pilot, so they did it in a way that left him in constant pain. They told him they couldn’t fix it and said, “you’ll get used to it.” The episode ends with Pilot ripping out the connection, which then allowed him to join with the leviathan the long but natural way. As the scene played out, Pilot said a line I will never forget: “Finally, the pain is gone.” It was one of those things that just hit me hard because I never knew people could be in constant pain, and without hope of a cure. Some expect you to just put up with it, meanwhile, others aren’t even aware of your pain. It struck me as a horrible fate; a fate I would one day experience myself.

At this time in my life, I suffered from migraines, so I understood chronic pain and I understood people discounting it. But a constant, never-ending type of chronic pain? How could anyone live with it? Truth is, many do. As much as One in Five Americans suffer from chronic pain, some reoccurring, while for others it is constant. Sometimes it’s a life-altering event like a car crash, or it can occur as a slow onset from disease. Pain that you feel often –and used to manage with ibuprofen – inevitably becomes a monster you can no longer control. My path was the latter. I often think of how it was like the dominos kept falling, one illness after another until one day I threw out my back at work. I left the building in an ambulance, and I left my job a few months later to go on disability.

I became a chronic pain patient in March of 2016 when states were starting to clamp down on opioid prescribing to try to stop the growing opioid overdoses. One moment pain-relieving opioids were an obvious medication for my pain, the next I was completely denied them and told to exercise more. It wasn’t until I got diagnosed with degenerative disk disease that I was able to start going to a pain clinic. I was lucky enough to find a pain doctor I like and who I feel listens to me and tries to help me, though sometimes stymied by the DEA and CDC Guidelines restricting what he can do. So while I may have access to opioids, I do not have access to sufficient pain relief.

I started the #PainKills hashtag to help people understand that when you develop chronic pain, your life as you knew it is gone. Pain kills our jobs, our friendships, our hobbies, our activism, our interests, and sometimes even our lives. Unfortunately, because of these very things, I have not been able to promote the hashtag campaign as I wanted. It also means running this blog will be a big challenge for me, but I feel a need to do something and blogging is a lot easier for me than social media campaigns. So I’m planning to blog about any and all issues related to chronic pain, disability, and the so-called opioid crisis.

Therefore, I’m expanding on #PainKills into this blog and website as a source for those who wish to help but don’t know all the facts or what they can do. The Learn More section of the website is like a 101 crash course on the issues surrounding chronic pain patients, opioids, the 2016 CDC Guidelines, and ideas on how to get involved. I recommend the Fact Vs. Fiction page for all the claims I have made – backed with sources. This will eventually include more content like reading recommendations as well as upcoming events and online campaigns. Thus, this website is the #PainKills Project, a two-pronged approach with a hashtag and blog to help counter misinformation about legal opioid use, and help tell our stories of brutal tapering and sudden, unnecessary withdrawals.

The CDC has stated it is planning to update the opioid guidelines, while two states in the US (OK, NH) have made laws against CDC Guidelines getting in between doctors and chronic pain patients. These guidelines will not last forever. There are opportunities to fight back and educate the public on two basic facts: the opioid crisis is not solved by limiting legal prescriptions, and pain patients are dying due to these restrictions. I truly believe we can use opioids safely while still using safety nets and science-based methods to battle addiction. Chronic pain patients and addicts deserve compassion and fact-based treatment. That’s all I’m asking for.

I hope you consider following and sharing this blog. If you have any feedback, please don’t hesitate to contact me.