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.