We arrived at the University of New England in Biddeford, ME on Thursday evening, just as people were sitting down to dinner. Due to some special health needs that I have, we had driven for 2 days to get there. It was during the final phase of our drive, that there was a terrible truck accident on the 495. Traffic was halted for 2 hours on both sides of the highway and people were getting out of their cars to see what going on. We turned on the Am radio to find out about the reason(s) for the fact that both sides of the freeway were cleared and stopped. Then we saw a medical helicopter come and touch down on the other side to pick up hurt passengers and drivers possibly. We were praying with other drivers that the people would be all right. I was a bit worried about getting to UNE, but not as worried as I was for those poor people who were injured or worse. We were talking with other people who’d gotten out of their cars and we even prayed with them for the safety of those involved.
We finally were traveling again and arrived at the University safely. Instantly, I started looking for the friends that I’d longed to see for so many years. Frantically texting them, I was wondering where they were and what they were doing? These girls and I had started group texting along the journey to keep our spirits up, take care of each other and keep tabs on our friends. Flora and others came to my rescue! They took my husband and me to the dining hall so that we would not miss dinner. I first found Christa, the one I call my “adopted daughter”. She has called me “Mama” for many years and we have become very close over time. Christa and Flora made sure that I had a place to sit with them as Heather came up and gave me a gentle yet wonderful hug. I got to meet Jaclyn, who I’d been excited to meet and get to know better. I was so happy to see all of them, I could barely hold back the tears of excitement that the moment had finally arrived. I met Barbara, Crystal, Melanie and her mom, Laurie. I finally got to meet Casey, and then Paul and saw so many other familiar faces that I would get to know throughout this most awesome weekend. We went to the hospitality suite after dinner and that’s where we got checked in, and collected the shirts that USPain gave us to wear during each day of the Summit. There was a feeling of comaraderie like no other as I met each new person, whose names I mostly knew. All of these people were fighting their pain, to come together on this first night. Most of us were running on Adrenalin & excitement after having traveled far and wide to arrive at this retreat. We then went to bed and tried to recover a bit before the weekend ahead.
Friday morning couldn’t come fast enough for me. We all arrived and were sat in a big theater/lecture room. First of all, I thought it was great that they gave us all water bottles in our USPain “bag of goodies” as we checked in. There was concern for us staying hydrated because water, coffee, lemonade and teas were readily available outside the lecture hall door. There was also a variety of fruits, cookies and some Nutri-grain bars. While walking in, you could see that this group was set up to “look out” for us and each other. The first day there was a couch to provide for the special needs of one of the chronic pain patients. Blankets were available to us because it was very chilly in the lecture hall. After the first day, Paul Gileno, Casey and others made sure that more blankets were available. Then additional couches, and chairs were brought in for others who also needed some extra comfort. This was done so that we could all be able to stay and listen, rather than have to get up and rest someplace else. They saw a need and they took great care of us.
Up first, Paul Gileno spoke as he Welcomed us as a “family” and introduced himself. He spoke about his own journey with chronic pain. Paul explained the meaning behind the color “blue” for the USPain Foundation and why he started it. We were waiting for some deep meaning behind the color, but Paul told us as he chuckled, that it was “just because he likes the color blue”. Next he was awarded a beautiful hand carved Cane with Blue accents on it. There are no words to describe the beauty of this cane; also the love and inspiration it took to create. I am in awe of the talent and Artistry of a fellow Chronic pain patient named “Ernie”. Paul said that the cane will be everywhere USPain Foundation goes, to remind everyone that #peoplewithpainmatter. I can’t remember everything that was said, but he said something about how people with pain are so creative and still useful persons in society with aspirations, talents and dreams. Either way I know he is very proud of that cane and he did positively say that it would be taken with him to every USPain function.
Next up was Shaina and she spoke of compassion and respect for each other. She explained that advocates need to continue to write letters to lawmakers. She told us “take care of yourself first”; and added that our caregivers support us and they also need support. We need to work with and continue to network with fellow pain warriors. We started after this, talking about “mind, body and spirit”….What we do to get our mind off of the pain?
Then another pain warrior came up to speak and it was Cindy Steinberg. She spoke about advocacy. She said that like Ghandi once said “We need to be the change we want to see in the world”. She explained that one way to make change is to be the changing force. Use Social Media, Public speaking, meetings, rallies, Television and public hearings. There have been successes in these kinds of advocacy outreaches. One of which is the Bill in Massachusetts regarding Opioids. The Bill stated at first that persons with pain were “only allowed 3 days of Opioids no matter what!!! “They pulled people together; groups rallied behind each other and they said “that’s nuts”! They got the Bill to have an “exception for Chronic pain, Cancer and Post Operative pain!” It was a victory in the corner of people suffering with chronic pain. We next spoke about “Step Therapy” and that CT 2014 hurts patients. Step therapy is in my understanding, where you start at the bottom and they try everything cheap and you have to “fail” that in order to get to try something else that might cost insurers more money. Essentially it is used by insurers to control cost. Next Cindy spoke about the “National Pain Strategy”, it’s a comprehensive plan to help pain patients.
Next, Tiffany introduced our panel of 3 lovely women, that I could really relate to. These women were: Ellen, Juliana and Wendy. They spoke about advocacy and “What makes for successful advocacy?” They went on to say “Why do you think your story is important? When you speak say that, be authentic and keep it real. They said that in being an advocate, one good way to start a conversation is to start out by stating something that everyone has felt or is familiar with. You can start with saying “just imagine you wake up every day feeling like you have the flu”? The three of them also explained that advocates need to get the media to know us. Other tips were: “Tell your story because that’s how you make a personal connection. Your story does make a difference. Along with helping others in pain, you are helping yourself”. They went on to explain the best way to talk to a Senator or state Representative. “Let your story grab them, if not visible make them visible”. They coached us to write letters, explain and allow Dr.’s to know how we feel.
Next up was a representative from the Pfizer drug company, Barbara Phillips. She discussed how “Opioid prescriptions have tripled”. (*Side note: In my opinion, the amount of Dr.’s treating chronic pain has gone up. The use of Opioids, I believe has risen due to the fact that more people seek treatment for chronic pain, the medications have low side effects and are more readily available; or they were before this pandemonium. For example in the 50’s and 60’s, the use of antibiotics went way up. It’s because they were more readily available to help people. We are getting “lumped together” with people who are “addicted” and not medically dependent on the Opioids for relief of chronic pain). Ms. Phillips says that the education regarding chronic pain, for Primary care Dr’s is almost non existent. The Medical Dr.s only get approximately 9 hours of education and training with helping chronic pain. But the Canadian Veterinary Dr’s get a whopping 87 hours of training with chronic pain for animals. She explained chronic pain as being “the 5th vital sign”. She talked about the differences between acute and chronic pain and said that PCP’s don’t understand chronic pain.
Later, Ms. Phillips went on to discuss the different kinds of pain, which are: Nociceptive Pain (bone fractures, sprains, burns, bumps and infectious or arthritic disorders), Neuropathic Pain (Post shingles nerve pain, RSD/CRPS/Causalgia, cancer pain, phantom limb pain and Peripheral Neuropathy, which is widespread nerve pain such as Diabetics live with). Then there is a third type of pain called “Mixed Pain”, which is similar to Fibromyalgia etc. She says that assessing and managing pain is easier after identifying which kind of pain you have. She talked about why she feels that “Opioids are over prescribed”. Ms. Phillips believes that Opioids were an “easy script for Dr.’s to write, and they underestimated the risk to patients taking them”. It is difficult to asses patient risk (use, misuse, diversion). In Misuse she explains that she meant “taking more than the prescribed amount”. In Abuse, she referred to “using it only for euphoria” and by Diversion, she explains “removing the Opioids by sharing of them with family members etc.” She also talked a bit about Abuse deterrent Opioids with the agonist/antagonist approach; and there was some educational information regarding Opioid use. She ended with her fact “that 50-80% of Opioid deaths come from chronic pain”.
After Barbara Phillips from Pfizer was finished speaking, we got to meet Senator Hill from Maine. She was delightful in that she got my attention and my admiration right away when she spoke of her love for animals. I love animals and feel the same way, so it got to my heart right away. Sen. Hill discussed the importance of advocacy and how its “scary” to campaign and go to the Capitol. She said that while legislators are “scary”, they’re just “regular people”. We need to “get up front, don’t be afraid to talk and go tell your story”. She also said that if you are “up against the clock, have your testimony in writing”. In giving us some good advice, she told us that they prefer to have the testimonies be about one page. Make bullet points and try not to or DON’T say the same things as others have said! They want to hear true, real, honest stories. She stressed that we should try really hard not to repeat. I’m talking about if you are going to lobby, you should be a real person and tell your real story; push the point.
Some people got up and asked questions and spoke out. The chronic pain patients said “What do we do to teach lawmakers about the importance of Opioids when needed?” In my opinion, they are all right to be used sometimes. She said she would want to hear “how we really need it but give suggestions on how we’d not allow others to misuse it. Come and tell her how it helps you but how to regulate it for those who misuse it.” I am thinking, why is it up to the chronic pain patient to figure out how to make other persons not misuse the Opiods? We talked about “splitting it into two issues”. It’s not only one issue and we are being put in the same group together with those who are abusing the medications. Senator Hills’ eyes became widened and she spoke out and said “Nobody’s ever said that before”, and we do need to split it into two groups! I’m saying that we aren’t “addicted” but physically dependent! We don’t get a “high” from the Opioids. If you ask 99% of the chronic pain patients, we will tell you that we do NOT want to take this medication. We wish that we did not need it to help with our pain. But the fact remains, that it DOES help some of us! She instructed us to meet in and start with our own districts’ Health and Human services community. Her information was very invaluable in that she gave bullet points to us in how to be a better advocate. Here are a few of them:
- Pick an issue and narrow it down….prepare and build from that!
- Go to your own house and federal people in your own state
- ADVOCACY: step #1 is to impact change- know your basics and bullet points (know the different parts of the govt. such as: the local and state and then the federal government; which is: Legislative, executive and judicial
- Congress is responsible for passing legislation. Each state has 2 senators and you should get acquainted with them. You can visit: congress.org and house.gov or senate.gov
- Take advantage of short meetings. Be ready and be direct! For example: go to candidate meetings, town meetings. Call and make yourself available and use Social Media whenever possible
Then after Senator Hill was finished, Shaina came back up and told us to learn about issues on USPainfoundation.org. Take what you know and what you have learned and try to make a difference. Share your story in that you can write a letter to the editor of your town’s Newspaper (to go to the correct person, look on UsPain.org). Shaina made us all laugh and giggle when she told us that “she wants to help” and it’s OK to “bug her”!
After lunch, we came back to an afternoon discussing “how to tell your story”. We must remember that so many of us, those with chronic pain can still do some beautiful and productive things. For example there were people there who’d made beautiful jewelry, and how about that gorgeous hand carved cane that Ernie gave to Paul at the beginning? We do have something to give! Also as far as getting our story out there, it was reiterated that when Public speaking to lawmakers or while testifying; write down short ideas ahead of time. You don’t need to memorize because they want to hear from your heart. You usually only have about 2 minutes to talk, so make sure you know what the US Pain foundation is, and bring copies with you. Did you know that US Pain foundation has 100,000 members? Get resources from US Pain Foundation and “BUG” Shaina! LOL….
Regarding the Federal government, for example the FDA, you’ll have a more “polished” audience and only 2 minutes to speak. You’ll get a warning sound when your time is almost up and then they just cut you off! You need to have paper and write down what you want to say. Get it down to 2 minutes! Your story is very important!! If you do use facts, please make sure they are correct, accurate. Regarding the State government, you’re testifying in a less formal manner. You’ll more or less be in front of a committee. Keep eye contact, keep to your personal story and your bullet points! Try to explain your disability and always arrive early when you testify.
After all of these discussions were finished, we heard from Dr. Edward Bilsky, a professor at University of New England. He had a Pharmacological approach and a scientists approach to the Opioid misuse. He was in agreement and supports the National Pain strategy. He discussed that he feels that “Opioids don’t help chronic pain”. In talking about some of the Abuse deterrent drugs, he said that “Naltrexone stops cravings”. He feels that “the problem is not one of addiction so much as it is of a misuse issue.” He went on to say that 2.5 million Americans meet the criteria for Opioid misuse. He called Opioids, “Heroin”. I really admired Dr. Bilsky and he made some very good points. He’s a very intelligent professor and I got the impression that he was a “family man” and “trying to help”. But I must give my opinion here, right? This is my blog and I have a right to my opinion in a respectful manner. My opinion is that Opioids have helped me over the past 14 years. I’ve actually gone down in my amount of medications, because I wanted to partly, and then because I was forced to later on. The medications do lessen my pain, though as my Pain Management physician says, “he cannot take the pain away, but only help to make is less”. I don’t feel that Opioids are “Heroin”. I feel that my Opioids, lessen my pain and I have never “craved” them. If someone asked me, I would tell them that I do NOT want to take this medicine. I have done all that has been asked of me and not much has helped my multiple, real pain issues and diagnosis’.
The part that was the most fun, was Friday night. We had a Lobster bake out by the beach and the ocean! It was an awesome sight and the man cooking the lobsters opened up the foil coverings to show me the display of many many lobsters cooking over a fire grill! We ate together with 50 other US Pain Foundation ambassadors from across the country. People were laughing, having fun and taking lots of photos. Dr Bilsky was there and was a part of it all with us. I did not have to agree with all that he said, because I look up to him as a Mentor who knows different things about this than I do. I can only say what is in my heart and my head, and how I feel. I think he would respect that too.
We went down towards the beach after eating Lobster, corn on the cob, potatoes and some wonderful strawberry shortcake for dessert (with real whipped cream on top!). My husband, my friends and I laughed, talked, cried and took action shots. We pretended to be “US Pain Angel’s” in parody with “Charlies’ Angels” (*well, not my husband….LOL, he took the photos). It was good for our hearts, minds and souls; to be around people whom we have known for so many years, but never have had the chance to meet in person. I felt a quote from the “Grinch” book come to mind in that “my heart grew 3 sizes” that night. My heart did grow on this trip. I felt love, friendship and comradeship with these people who were like me in so many ways. We may be from different sides of the Country, but we all took care of each other and watched out for each other. We made lasting friendships with the new persons that we met. It was an awesome sight to see people exchanging social media names with each other, phone numbers and contact info.
Day #2 of the pain Summit was about getting people to sign and support the Ntl. Pain Strategy. Cindy Steinberg spoke about this and then spoke about CARA- comprehensive addiction and recovery act of 2016. We learned about the Federal Pain Research Strategy- a systemic plan for future pain research. We found out that if you want to learn more about this “Non medical switching”, you can watch You Tube videos about it. Research shows that Non medical switching leads to worsening side effects and conditions. When the insurance payers just decide to switch medicine on people, it’s usually without the knowledge of the persons attending physician! There are 42% more E.R. visits with a 12% higher rate of outpatient visits as well. Shaina was explaining that “Biosimilars can have bad side effects versus Biomedics”. They want to give us cheaper and less effective drugs. “They” meaning insurance companies. We need to speak out and restrict “Biosimilar drugs”
We discussed “Step therapy” and how it is terrible for 67% of patients. They end up waiting for help as they get more sick and go through withdrawals sometimes. There is a recent article in the American Journal of Medicine about “Step Therapy”. Then we moved on to “Abuse deterrent therapies”. It is an interesting new technology, in that the drug companies make the medications impossible to crush, chew or melt; in order to get a “high”. This also deters people from using it for the wrong reasons or selling it on the streets. A place to get information is: WWW.Painconnection.org and their phone number is: 1-800-920-0664. Their FAX # is: 1-800-910-6951.
At the end of the day, we got some useful information on Bill tracking/legislative tracking. We use this to find legislation on a certain issue; to learn about and track it. You can visit WWW.uspainfoundation.org, and go to “Bill Tracking” and track by state and /or by issue. The top right corner of the page tell us how many bills are going through right now. You can go there to find the Bill title, Bill sponsor and the status of the Bill.
As you can probably see, by the second day, I was in more pain and could not focus quite as much. I tried to take notes as best I could. I was so impressed by the actions of Paul, Casey, Shaina and whoever else helped us. Many of us, the pain patients who were in attendance, were very cold and very much suffering with a lot of pain, due to the extra traveling, unfamiliar surroundings for sleeping and having to be up and listening intently for such long periods of time. I know for myself, I’m on Disability and just not able to do things for very long periods of time. They took the time to listen to us and got more blankets. They brought in extra couches & chairs to give more people a place to rest and still take part in the conference.
All it takes is a kind gesture from someone else sometimes to make us feel cared about, and our pain acknowledged. Just the fact that someone notices our needs or takes care of our wants at times, really makes us feel good or at least better, even if it is feeling better inside of our own skin. There was a time during the conference when I was starting to fade. I was not feeling good and my pain was higher than usual. I was so grateful to Paul, Casey, Shaina and the others who got the extra chairs etc., so that I could spread out a bit. At one point, Casey was in front of the room and she looked over at me. She could tell that I was not feeling very good. Mostly, you can see it my face when my skin turns more pale and I stop being the animated person that I usually am. Casey gave me a certain nod and smile; a glance to let me know that she knew and she cared. It meant the world to me! Then Christa,(my “adopted daughter ” all of these years, whom I finally got to meet at this conference) who was sitting next to me in another chair with her legs also up on a different chair, took hold of my hand. It was a feeling of friendship and deep feelings that one can only share with someone else who truly understands. Then my husband and caregiver, Craig took my hand and I felt a rush of relief go through my body knowing that I had someone there with me who was in this with me for the long haul. As Ellen, another chronic pain patient, told me “we are lucky that we know a true connection and deep love, that others don’t get that lucky to experience”. I felt it again when Craig stood up to speak about care giving, after Stu had done such a great speech on it. My husband got up in front of 50 Ambassadors, many other care givers and the administration of the US Pain Foundation, and professed his love for me. He spoke of how it is for him, on the other side feeling helpless sometimes. How he can only be there for me and how he “loves me so much”. It made me tear up and a rush of emotions ran through me as someone handed me a tissue.
That night we had a campfire, made S’mores and got to hang out with the neatest 13 year old boy I’ve ever met. He was “Ty” and he was the best. How many 13 year old boys, would get up and get things so many times for all of these different people with pain? Ty did that and more. He brought me more soda and more cookies! He made me laugh at the fire pit and cry when I heard his mom read off all of his accomplishments to help children with pain. What a neat kid and one that any parent would be so proud to have. I know that Casey is very proud of him. I am proud to know him and I know where he gets his strength and tenacity, we all do. I could see it in their interaction together, the mother/son bond is strong. Casey is someone who I was excited to meet and who became a close friend that weekend.
So many people that I felt a bond with that weekend. For about 54 hours, I had the pleasure of feeling a closeness in knowing that no one judged me and we all stood up for and looked out for each other. Nobody was left out and when I wanted to do a meaningful song in sign language, they found a way to let me do it in the hospitality suite on Saturday night. The employee that was giving us soda and other drinks, had a blue tooth speaker. She hooked my iphone6 up to it and my song suddenly was loud enough for everyone to hear. I used to be an Interpreter for the Deaf. Now, due to a MVA in 2002, I am Hearing impaired and have 2 hearing aids. I don’t need to hear the words with the song together, because I learn the lyrics first and try to go with the music. I got to do my “thing” that I CAN do. I am no longer able to Interpret, but I can do some artistic interpreting for a short period of time. I signed an ASL cover of the song “Stand in the Light” by Jordan Smith from the “Voice”. Sure, the music stopped a few times and it wasn’t perfect, but nobody cared. I got a round of applause and people told me it was “beautiful”. It made me feel so good. I remember, April came up and suggested that it be “the song” for the US Pain Foundation. How cool is that? I got to “do my thing”, but it was not for me alone; I wanted to give a “gift” to these people, these special friends that I had gotten to meet. To show my love for them and to express that we should still “be who we are, be true to ourselves; to stand in the light and be seen as we are”.
Thank you US Pain Foundation, for a beautiful, wonderful and memorable weekend. I got to make so many new friends and more whom I wish to get to know better. Craig and I made good friends with another couple who we felt bonded with, Stu and Ellen. I can’t wait for next year and I hope to be behind the scenes helping more, because I would love to be able to do more for those who are doing so much for us…thank you Paul,Casey, Shaina, Nicole, Lori and everyone at US Pain and everyone who was there…thank you so much!