By Claudia Merandi.
Due to the severity of my Crohn’s Disease, I spent well over 500 days in the Hospital. I ran my business from my hospital bed as well as fought a custody battle. Nine years ago, I noticed the term “drug seeker” being used frequently. So, I started to keep a journal. I would diary EVERYTHING. Four years ago, pain management was introduced into my life and I started taking daily opioids. I went from being admitted every 14 days to every three months…three months turned into six, and so on. Opioids changed my life for the better. I believe in living a proactive lifestyle filled with a clean diet, daily training at the gym, and I eliminated all assholes from my life.
Two years ago, I became a presence in the Crohn’s community and that’s where I began advocating. In September 2017, I was advocating day and night so I knew there was one way to bring this issue to light: organize a nationwide protest. I had a deck of my daughter’s index cards and I printed out all the states. And that was the inception of the Don’t Punish Pain movement. I didn’t know what the hell I was doing but I had a vision and I stuck with it. Organize in all 50 states, don’t accept money, don’t raise money, and stick with my vision. Trial and error.
April’s rally, I had one goal: teach the pain community what I knew. Educate them on their senators, congress people, and their local legislators. All baby steps. Many didn’t know who their federal senators were so it was a learning curve for hundreds which became thousands.
I announced September 18th’s rally but with a different concept; create one that’s amenable for all. Protest any place. You find a venue, and I’ll teach you how to get a permit, if one is necessary. Once a venue is selected, we’re going to help you create a flier. Now you’re good to go with your fliers. Pass them out at pain management, PCPS, hair salons…wherever and however.
Many were and are nervous about protesting. Many have expressed, “Well, if I protest, I’ll lose my pain meds.” No worries…you’re going to lose them anyway. HAVE A VOICE AND PROTEST.
How do you become a part of the DPP movement? Two ways. Visit dontpunishpainrally.com and find your state’s protest…OR….join Facebook, Don’t Punish Pain Nat, take a look around, print out all your articles and then I ship you off to your state’s page so you can organize within your state. This way your state is broken down. I wanted to have, at least, two -three protests per state. Protest at a pain management center, hospital, ER, capitol, CVS, Walgreen’s, Senator’s office, Congress person’s office, city/state building, CDC, FDA…ANY WHERE…JUST BE HEARD!! Call the police, see if a permit is required, and conduct yourself as if you were in your Nana’s house. Don’t smoke, keep it classy, and BE HEARD!!
I travel everywhere with my protest signs. If my kids want to earn 20 dollars, I’ll have them stand outside with me in front of the Department of Health…lol…they’re so embarrassed. The nurses were picketing, so guess what? I jumped in their picket line with my signs and picked up free media. You have to be creative. I run advertisements, created the first ad, and now there will be two more radio spots created. I pay for everything out of my disability check. I’m blessed I invested well.
I have car magnets made up and drive around with them. Every place I got, I have fliers with me.
What’s going to bring this all together? The Don’t Punish Pain Doctor’s Collaborative. I’m organizing 50 states with, at least, 200 docs in each state. I’ve just started this. I’m going to advertise in the different journals that pain docs read. Once again, not cheap but I need to do it. Once I have my docs organized and they feel comfortable, then we move forward. As I write this, docs are sending me what they want in their prescribing guidelines.
What’s my goal?
1. Create a separate set of guidelines, created by docs, and get my bill sponsored. Rhode Island is the smallest state so it could possibly be the first state to get one passed by both the house and Senate, then my federal senators can pick it up on the Hill.
2. Teach people how to advocate. They’re intimidated. I have a saying, “at the end of the day, we all have the same size coffin.”
3. Teach the pain community how to be proactive with their health. Maybe they don’t need opioids…maybe they do. But, for the love of gravy, let’s try to live clean lives and eliminate what we can. They don’t like when I say it, but it’s how I live.
4. Can we come together as one in the pain community? Nope. Why? Because when you’re dealing with people in pain, it’s not a regular community.
5. Why we? Why did I take this on? If I didn’t think there was gross negligence happening in the country, I wouldn’t be here.
This is a crisis but it will be fixed. It may take a few years, but it will be resolved. We need to change the face of an opioid user and that’s why I put mine out there. The country has attacked pain patients and attached a stigma to what a pain medication user looks like…and it “ain’t” me.
I’ve given these folks their flier, their letters to their senators/congress people, their media advisory, their press release, and their signs. All they have to do is BE HEARD.
I’ve been blessed to have some amazing people help me. I couldn’t have done this alone because I’m not a computer savvy person.
This protest started as that…but it’s now a movement. This movement has given people a reason to focus on something other than their pain; it helps them battle their depression. They’re being productive. And I consider them family.
Post September 18? Nothing changes. We prepare for the next one and it’s going to be even greater.