Melissa Swanson (from This is My Life ~ Surviving Fibromyalgia) and our wonderful team of writers have produced a great first stop for all Newbies (and some extra support for us Oldies) with this issue of LIVING WELL with FIBROMYALGIA.
I was chosen from 102 applicants to be one of the 30 newest members of the Leaders Against Pain. I had made it through the application/acceptance period, travelled to Salt Lake City, Utah and climbed Ensign Peak. I was ready to get to know my fellow advocates.
Quite honestly when the agenda had been sent to us I really didn’t know if I could do it. Each day we were scheduled to start with breakfast at 8 a.m. and go pretty much non-stop with speakers or activities as late as 9 p.m. This was going to be tough. Since starting my new job in September once I get home from work I lay down for an hour or 2 nap before dinner and family activities.
How was I going to survive sitting in an office chair for all of those hours?
Our first morning we spent learning Communication tools, Teamwork and foundations of personal story.
We had a short break for lunch then we started back with Dr. Michael Olpin. He is the Author of Unwind: 7 Principles for a Stress-Free Life in the World of Advocacy, Professor of Health Promotion and Director of Weber state university Stress Relief Center. He was there to help us learn the art of meditation.
I have always had a hard time to shut down my mind long enough to do meditation. My mind wants to jump to all of the things that I could be or should be doing during the time that I am supposed to be sitting there thinking of nothing. Heck, most of us sitting there were type A people. He was a great speaker and told us it was okay for our mind to wander but then go right back to meditating. I did have more success during his exercise than I have in the past. Always go back to the number 1.
Following our meditation we had 3 1/2 hours of lecture on Communication skills, support Groups and Awareness Events. They had provided us a very nice catered dinner and we had a nice time getting to know each other. After dinner they had scheduled a band ~ the Kenny Favero Band to play from 7:30-9:00 p.m.
I have heard from those who stayed and the pictures that were taken that the band was great and everyone had a wonderful time. I went up to my room at 7:00 p.m. took my medication and went to sleep immediately.
My mind & body were exhausted.
7:00 a.m. came too soon.
We had breakfast and started our morning with the President of NFMCPA, Jan Chambers talking to us about “Chasms: Why the Patient Voice is Important”.
The reality of why we were there, the purpose of a group like Leaders Against Pain.
We were told that something terrible had happened. My heart stopped.
One of the new leaders appeared in front of us, her words will never leave my memory, she said “I have been expecting this phone call for years”.
The room grew silent. She told us that her daughter who also suffered from Fibromyalgia and had been denied the medication (due to the new laws) had chosen to self medicate and lost her life in a car accident.
Even now I can not write about it without getting emotional. We were all in tears while in front of us stood this brave Mother who had just lost her child telling us to continue on, be strong and that she would continue to be a leader and fight when she had taken care of her family.
We had been given a 15 minute break for all of us to regroup. I had begun crying for this young life that had ended because of others deciding who should or should not be allowed medication. I was crying as a Mother who continues to pray every night that my own daughter not carry the genes and develop these awful illnesses. I was crying because I had lost my dear neighbor & friend Cleo because she had lost the will to fight the pain and depression. I was crying out of anger that the laws had changed because a few bad eggs ruined it for everyone else that needs the proper medication.
I was crying because every single person in that room had thought at least once that we wish something would happen to us to end our pain. I found out later that in this group of now 29, 3 of them had attempted suicide at one point in their lives. I had to leave the building. I couldn’t stay inside. I couldn’t stop from crying. All of the emotions were too much to bear. I left the conference room walked down the hall past all of the other Leaders who were comforting each other. I had to get away. I kept walking until I found doors that would lead me to the outside. I found the nearest bench right outside the door and set down. I couldn’t stop sobbing. One of the leaders (Lila) came to find me. She was very comforting, listening to me. I know that we were out there for quite some time because one of the Mentors came to get us for the conference to begin again.
Maybe returning to the conference is what we needed.
Our youngest participant Caraline said she had found her “purpose”.
I think that is what kept us all going as we returned to the conference.The following speakers were Dr. Ed Redd(a Physician & Utah House Representative District 5) (Stepping Stones: Communicating Well with your Legislators) and Carla Fugit(Emotional Intelligence:Perceiving Personal Feelings in Decision Making). In fairness, I really didn’t hear much of what they said. I have good hand outs, notes that I had taken and notes from a fellow Leader who shared her very detailed notes with me. I was emotionally and physically exhausted.
The rest of the day we had to practice being interviewed on camera, practice hands on training for join.me and Trello. We will be using those programs to participate in our monthly Leaders Against Pain online meetings. We were scheduled to have a Panel Discussion following dinner that evening. Instead we decided as a group to have a casual meal outside and run it as a support group. We had a wonderful time talking and taking pictures. I went up to the Lobby where my Daughter was and asked her to take a group picture of those of us who felt well enough that evening to be there. We have some wonderful pics of amazing Warriors. Our Warrior (Sherri) led us all in a group of laughter yoga. I have a great video to be used in future blackmail.
Afterwards, we had a solemn discussion of what had transpired that day and how others had felt about ending their lives at their low points when they had no support and it didn’t look like they would ever find the right combination to help them. We all agreed that we had felt we found support from each other. These total strangers brought together in a common cause. We ended our evening with a silent prayer and returned to our rooms.
Our last day together was full of learning. We started with Christin Veasley; co-founder, Chronic Pain Research Alliance who discussed National Pain Strategy Evolution from IOM 2011 Report, Relieving Pain in America;A Blueprint for Transforming Prevention, Care, Education and Research. Amy Goldstein; Director, State Pain Policy advocacy Network of American Academy of Pain Management; Strategic Advocacy on State and National Policy Issues. Dr. Steve Passik; VP of Clinical Research; Changing Landscape; access to Care Hurdles for Chronic Pain Conditions. Dr Lynn Webster; Pain Specialist & Medical Director at CRI Lifetree; Research Updates: Fibromyalgia & Chronic Pain Conditions.
This blog would turn into a book if I told you everything I learned from these speakers. So instead I will continue to post information on Fibro Warriors ~ Living Life.
We had amazing speakers on how we can be a part of the process to help those who do make the decisions about our healthcare. I am very grateful for people like Jan Chambers, President of National Fibromyalgia and Chronic Pain Association who does a tremendous amount of work and have a gift of spoken word that have gone to bat for us with numerous meetings in front of those officials who do make the decisions about our health care.
We were asked which of the LAPAN committee’s we would like to participate. Our choices were Messaging, Awareness, Legislation, Advocacy, NFMCPA programs and activities, Access to care, State/region issues, LAPAN education and research updates, Support groups, Network memberships.
I thought about them and our training over the past few days.
Until the past few years I have never really been all that interested in following state-wide politics. I live on the Wisconsin/Minnesota state border and the only news I hear is Minnesota which makes it hard to stay informed on the state level.
I know my strengths and weaknesses. Trust me when I say I love to talk but speaking in front of the House of Representatives and State Senate is a different ball game. I chose Messaging, Awareness, NFMCPA activities and Support Groups because I love to write, plan events and help individuals.
On the conference room wall they had created a road to advocacy. We were each asked to write on the road a person and their characteristics we admire. I chose Celeste Cooper, Author, Patient & Activist. They later told us that the exercise was actually a reflection of our own traits that we have and see in those who we admire.
We were then welcomed to the Leaders Against Pain Network.
As we each received our certificate we were asked to sum up our experience in one word. Mine of course was Warriors. It was overwhelming saying good bye to these people that were strangers just 4 days ago and now we had a bond that did not feel like just friendship but like family.
We were on the same path as Fibro Warriors ~ Living life and Leaders Against Pain.