My Story: How A Pain Activist Was Born and a Movement Was Created

My Story: How A Pain Activist Was Born and a Movement Was Created

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.

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Authored by: Claudia Merandi

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My Dr kicked me out and made sure the pain clinic in this area knew about it. So she not only screwed me but made sure she wrecked my ability to get my pain meds close by. The next closest clinic is over an hours drive from here and may not be taking new patients.

I’m on 4 hydracodone 7.325. /day. Lumbar is pinching my spinal column in 4 places / Osteo arthritis in every vertebrae and now thoracic is causing numbness in thumb – index – mid fingers both hands.

I’m a care giver to my 80 y/o parents so things aren’t easy. I’m on 1/4 mg Xanax and because pain wakes me up multiple times a night I’m on 10 mg Ambian/night. Was trying to find right dose and medicine for nerves so Dr had me on Valium but I was afraid of it because it was messing with my breathing. Dr changed me to 1/4 Xanax 4-1/2 weeks ago.

URINE drug test on the 8th of August….Pain management appt on August 22nd. Was told I failed the test because they found Valium or “something like it” accused me of continuing to use Valium and kicked me out with no chance to defend / retest. I kept asking for retest and Dr said no because if I Test now it will probably come back clean and that what ever I supposedly took would be well out of my system because too much time had passed.

She told me she was going to step me down from my pain pills.

At that point my scrip renewal was August 30 leaving me with 34 pills. It was my understanding that she would reduce the strength or numbers on next refil. August 30 I call in the early AM for the refill and did not get a call back until 5:40pm and was told no refills will be given. Nurse practitioner told me Dr told me at last meeting I was to use remainder of my pills and step myself down. No formula or instructions on how to use the last 34 pills safely.

This Dr did the same thing to my 80 year old father!! Broken foot / Broken ribs / Broken back 2 vertebrae / two stents / 1 heart attack ! Dad was prescribed Ambian and his script ran out. She didn’t renew it / found it in his urine and completely cut him off with NO STEP DOWN!

I’d love to list the Dr name and practice but am terrified of retribution. I can say it’s in the state of Ohio across the river from Williamstown WV where we live.

Urine drug tests are NOT 100% and a patient as got to have the right to defend and retest to prove innocence. Being automatically treated like a drug addicted criminal is NOT AMERICA and it’s not right!

I’m terrified and really ANGRY!

sandy auriene sullivan

I was dx’ed at 13 with ulcerative colitis; hospitalized for bleeding stomach at 17. Most of my life ‘pre’ chronic pain years involved terrible bowel pain, cramps and days you cannot leave the house unless the loo is stuck to your arse! No one understood why I was late to things in the morning…. and how do you explain that at breakfast?! 20 years ago? Few had a clue! Take immodium… but that would do the opposite and make it worse?! [although one can argue my genetic disorder; Ehlers Danlos Hypermobility meant I’ve always been in pain…. it is a CP condition alone too it wasnt until I car accident I could no longer ignore my pain]

18 years off/on with pain medication and the last 14 with almost no breaks [except tapers and self-tapers to change medications] the one thing that EASED? Was my bowels. Opiate constipation? What’s that….?! Never had it. Seriously.

Opiates seem to regulate my bowels; I go like a normal person. Once a day, healthy, normal, solid. [TMI but Crohn’s folks understand…]

Now they’re messing my meds up – it messes my bowels up. I really wish I could just go back to my moderate therapy in 2012 which was 2x60mg oxycontin OP with 2 15mg oxycodone for breakthru. That’s the last year I was really doing OK.

Now have to worry about medicare next year too? Why doesn’t the DEA just hand out a bullet to each of us? Oh they are…

Margaret Kampen

I agree with David Cole! I believe one of the things that could do is tweet the president all at once and schedule a day and time to do it. Is anyone else on board with this idea? Please let me know.

Bonnie LeBlanc

Thank you for your voice. People don’t live in our bodies and if were not bleeding-many people don’t believe anything is wrong. Personally, I’m tired of suffering needlessly because other people abuse the system.

David Sanders

You are so right….im tired of being looked at like im some kind of junkie or whatever. I wish those people felt my pain and see how there attitudes would change.

Cindy Deim

I write my representatives, I try to keep up with what’s going on. Everyone should be writing in making a stink. We have nothing to lose.

Brian D.

I’ll be there in Clinton Township Michigan Sept. 18th, Thanks for your efforts!

andy o'connor

Tell me how I can help. I’m related to pain sufferers

Holly

YOU ROCK!!

Shilo

FANTASTIC. I FEEL VERY ALONE IN THIS BATTLE. THANK YOU

DANIEL FOLTZ

God bless you. It takes a great deal of Courage. I must say I would love to do this. But yes I am afraid unfortunately I will lose if I do nothing and I will probably lose if I do something. I don’t know what to do other than to follow the leader. I guess that leader is you. I am good with my words. They say the pen is mightier than the sword but in this case I sometimes wonder. Sometimes I feel as though there is no hope for us. I’m currently faced with inevitable loss of my opioid prescriptions and I am being forced to take a surgery that may or may not help some of my pain. I have severe nerve damage from a failed spinal fusion where are the instruments are pressing on my nerves. Several forms of spinal arthropathy, a wedge compression fracture that is pressing on Mighty 11 and pain that is sometimes unbearable even at heavy dose opioids. My future is uncertain and I’m not sure that I will be able to deal with all this. But I will do my best and I’m inspired by your courage.

Naomi

I broke my back at 17 , ive had 5 lower back fusions since 1989 to 2014 , i live in Chronic Pain everyday and its just not for that. Over the years ive had 2 knee surgerys, cancer /cervical, complete hystrotimysurgery, rt carpel tunnel surgery, rt roter cuff surgery, Sleeve Gastronomy surgey in 2014 with many many complications, including the staples in my stomach hurt dailey, i have Fibromyalgia, Arthitiss, Cervical bulding, and now need a rt hip surgery, rt knee surgery. So for me to keep what pain meds i get now , i have to jump through hoops all the time , do injections that dont work, and my ins wont pay for. And then i have to go in every 20 days to get my meds which my dr at Sunnyside clinic in clackamas or never gives me enough to last. So i feel he is setting me up to fail on purpose. Also i feel that dr is basiclly TOURTING ME FOR MY PAIN MEDS. NEED HELP . PORTLAND, OREGON!

I have Crohn’s disease and I have had flare up and I went to the hospital and they said that I was not in pain . I wish that some of this doctor’s could go through what I do I’m always in pain it has control my life and some days I can’t get out of my bed cause of the severe abdomen pain and the water stools and weight loss I have lost 45 pounds and I was not trying to loss any weight and the fever is so bad I welcome the end of the world so I want be in so much pain and the doctors around here will not give anything for pain all I know is life sucks right now

Andrew Wallace

Thank you, thank you, thank you for doing all you are doing for our pain community! I love how you are empowering our community to speak up for themselves and build a Pain Army to take on all the wrong doing both legislatively and medically. I myself am from Delaware and suffer from CRPS. I cannot go out and protest with a large group as the excessive noise basically crushes me, especially people yelling. It’s agonizing even with my ear plugs and noise reducing head phones. However, Delaware is so small that there’s only 3 degrees of separation between our population. I can and plan to set up meetings with my state legislators and federal legislators. I already know many of them as well as our governor. I want to tell them my story. What else should I tell them? I don’t lack any access to them as I live in the capital of Delaware and can see the state House from my home, besides knowing half of them. I just want to make sure that I’m making as big of impact on them as possible. If you have time, can you please advise me?

TRACY BRYAN

Great article, I am on board

Ken Atwood

i love what you are doingi

Thank you for all you have done! Time, energy, & care it’s something we can all do to help ourselves, loved ones, friends so I plan on attending my states rally!

David Cole

Thank you Claudia, I’ll definitely help you in any way I can. One of the big problems with the pain community is a lot of us can’t get around very well, especially after we’ve been forced to taper or our medicine so far that we can hardly function, or they just take meds completely away. But if all the pain patients do whatever they can whether it’s posting articles on Twitter, LinkedIn whatever we can do to make a difference.
Since we know president Trump likes to get on Twitter in the morning, I’ve been thinking it’s a good time for about 10,000 of us to hit Twitter on his news feed at one time.
AG Jeff a****** Sessions is part of the problem. He has an agenda because he lost his son to illegal drugs. Looks like the FDA and HHS is not going to release there new guidelines for pain patients until after the election, this has become a pain patient and they’re Dr witch-hunt.

Kathleen Shelby

Bless you for everything you’ve done and will do.

Kris Aaron

Thumbs up and virtual hugs to you!! I’m a protester from the ’60s (anti-war, pro cannabis, you name it) and loved marching with a sign and annoying the authorities in the process. But this time, it’s for REAL and I can’t wait to get out there!
We’re where the gay community was back in the ’80s, when AIDS was first recognized and so many of our friends and family members were scared and sick — and dying.
I’ll provide my pain specialist with info on our state’s protests and find out where I can leave fliers at medical offices in our area. Let me know what else I can do to help. Chronic pain patients with health issues are often unable to leave their homes, but this protest is essential if we’re going to hold onto our opioid prescriptions and not see our physicians punished for practicing good medicine.

Jerry Mangan

Way to go girl!!

Bill Farel

My question is where r these places to help u deal with pain.I live in Delaware county. pa.And there is no places .I just sit in the house watch tv and try to sleep.Not a very good life.Iam a diabetic plus over the years .Ive been threw 8 surgerys on my neck shoulder arm .Leg its terrible.