Something Important, I mean really important happened in Rhode Island. That important step is called “Claudia’s Bill”. Claudia Merandi co-wrote a bill to exempt chronic pain patients from federal opioid limits!!
This is huge! Recognizing that each chronic pain patient should be treated as individuals. Hopefully, this is something we can build on and use as an example for other states. The bill is currently in the RI Senate waiting on a vote, at least as of the article date. Let’s keep our fingers crossed and make our voices heard!!
So, a few weeks ago, I received a letter from my prescription insurance carrier. I opened the envelope and began to read. Well, I couldn’t even see straight by the end of this letter. As a matter of fact, I had to re-read the letter several times to let those words sink in. Here are the highlights…..
The very first brief paragraph basically says this….
My pain meds and muscles relaxers will only be covered at one pharmacy, and they went on to name the pharmacy. So think about this first line, sure you can get them filled at this particular pharmacy, but if you went anywhere else, we are not going to cover it!! So thats outrage number one.
Here is number two. According to the letter…Here is why this is happening….
They say I had filled a pain med or muscle relaxer at a different pharmacy by a different doctor. So they feel I am doctor shopping. (My interpretation). They have this so wrong. So incredibly wrong.
What i believe they are referring to is a muscle relaxer I had filled by my MS doctor at the pharmacy in the building he is located. I did this out of convenience. My local pharmacy is a mom and pop establishment (I don’t trust chains), so their hours are shortened. The day I got my script filled it was late cause I just had my Tysabri infusion and I was tired. This is the so called violation.
So look what this letter is saying, we are watching you and stigmatizing you, an oh yes, lets penalize and shame while we are at it! I haven’t called them yet but I intend to and i plan to post this everywhere to embarrass Express Scripts and all the rules and regulations out there that one again make us feel like addicts. They no nothing more about me other than my medicine and where I get them filled and by whom. Not even one question as to why I filled this script or any other I may have filled in the past. I flipped out and continue to do so.
This is just another example of the shaming we as chronic pain patients have to endure, and now they add financial shaming. If you notice , they hide this by being concerned with drug interactions. Get to know your subscribers, talk to them in order to understand their situation. However they wont because this is yet another example of CYA due to the opioid hysteria. These knee jerk reactions hurt people, not help them.
Being chronically ill is expensive, any patient will tell you that. We often skip care and appointments because we don’t have the money. Now, lets add the threat of another financial responsibility if we step out of line. This is appalling. I never thought in a million years having chronic conditions would be this difficult to manage. its a fight everyday and companies like this make the fight that much harder.
I struggled with the decision to write about my accident, but since its the source of the chronic pain I struggle with daily, I think its time.
Up till June 1995 I was just like every other 22 year old. The difference with me was I didn’t like to party. I wasn’t a big drinker and I didnt like the feeling of being out of control. Through the years, especially high school you see the aftermath of drunk stupidity. Mondays were tell all days or when rumors and reputations were born. It was sad to see and I swore to myself I would never get bombed like that.
Don’t get me wrong, I have and still do enjoy a drink or two but thats it.
Let’s jump to June 30, 1995. Mt best friend and I decided to go see a band at bar Anticipation in Belmar (Lake Como). We’ve never been there and we personally knew the band playing there that night. We figured we would check it out. My life changed that evening. I often think back and cringe. I’m not going to get into the drama that led up to the incident in this post. It’s a lot to write about and honestly still overwhelms me with emotion. So I will continue with the actual accident.
Let’s begin with leaving the bar, technically July 1 @ 1:30 am, walking towards my friends car……
A car drove forward and snagged my foot under a telephone pole being used as a parking lot divider. The pole had rolled initially onto my foot. The car then according to witnesses backed up then came forward again knocking me down and the car pushing the pole on top of me and the car drove up onto the pole while my right leg was pinned under it. So there was a point that I had the weight of both the pole and car on my leg.
The car backed off of the pole and me and took off out of the parking lot with people chasing the driver and screaming that you just hit someone. According to my friend the pole was on top of my lef for 5-8 minutes. Several guys had to lift the pole off of me.
I cannot accurately describe the pain and fright that I felt. First it was the most excruciating pain imaginable followed by nothing because I believe I went into shock and passed out. I found out that the body will only tolerate so much before it shuts down to protect itself. Unfortunately it took 30 minutes or so for the ambulance to reach me. In that time, I truly thought I lost my leg and kept asking the many people around me if my leg was still there.
It was an eternity, so it felt, waiting for help. Strangers staring at you and talking about what happened. When the ambulance did arrive, they had to cut the right leg of my jeans, As they did, there was a collective gasp. I couldn’t help but to pick my head up and look. From the right shin down, my leg and foot were flattened facing to the right in a very unnatural position.
I was then loaded into the ambulance and rushed to Jersey Shore University Trauma unit. I had surgery a few hours later to basically put my Tibia and Fibula back together again.
I decided to add the pictures of my leg for people to better understand where this pain comes from. This is real pain that isn’t gong to be cured with massage, meditation, or happy thoughts, This is real physical tangible pain, This is one part of physically struggle. So in the era of ban all opiods, remember there are those who take them responsibility to help contain some of the pain to have a quality of life.
Opiods aren’t the enemy. I’m on a regimen that maintains a tolerable pain level. It’s not to het high. There is a conversation happening out there, but rarely are we the chronic pain patients invited into the discussion. It’s obvious why, because in a sense we are the voice of the opioids. We are the other side of the argument. They look past us and just see addiction, Opioids=addiction no matter what. we are not factored in at all. People will abuse anything and everything. Look at vaping, it has helped so many but because others abuse, they want to just do away with it. banning and shaming i not the answer because it drives everything underground. I will post a link to a story about a mother who passed out from illegally obtaining Percocet on her toddler and he suffocated to death.
So as a society, we need to redirect this conversation about addiction and look at personal responsibility’. When I hear Dr Drew say pain shouldn’t be the 5th vital sign, I am flabbergasted. It’s obvious the underground opiod trade is going to flourish with these kinds of attitudes. People are getting desperate. Just watch the statistics, you’ll see the overdoses on underground opioids are gonna skyrocket. What I find sad is in the rush to solve one problem, they are creating another that will be even bigger than they can imagine!
Please, Doctors and Lawmakers and even the media, give Chronic Pain Patients a seat at the table so we can help and bring common sense back to treating pain patients with dignity.
These photos are just the beginning, recovery was difficult. In my opinion, I’m still recovering and adjusting to daily life. The pain is real…
Living life with a chronic illness is definitely not easy. But I do my best to push through all the barriers this illness puts in front of me! In my heart and mind, I believe maintaining a positive outlook on all situations in life will carry us through to much better times! I hope you find the information that I provide both helpful and inspirational!