My Advocate Adventure IV

LAPAN_logo-2-01I 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?

Friday

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.

Saturday

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.

Sunday

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.

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Friendship, Loving, Inspirational, Educator, Mentor, Author, Patient, Advocate, Leader, Nurse, Spiritual, Caregiver, Angel on Earth

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.

NFMCPA Melissa Swanson
Jan Chambers, Melissa Swanson, Sharon Waldrop, Cindy Sharp

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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.

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My Advocate Adventure – Part II

It is only days before I leave for the Leader’s Against Pain conference.

“Are you getting excited?”

Quite honestly, No.

It is Monday and I have only 2 evenings left to finish my introduction, watch 2 videos, make sure 3 people not 1 have everything packed, have our house/dog sitting finalized, attend parent teacher conferences where I work, complete 3 students assessments…. I could keep listing all of the things I need done …oh wait, I need to do make a TO DO list.

As we all know packing for us is not the same as someone who doesn’t have a chronic pain condition.  We first have to consider the best travel situation and comfort. We have to pack heating pads, ice packs, tens unit, sleeping masks and DON’T FORGET THE MEDS!!!!

Usually, I would take the time of day into consideration for my travelling. I would allow myself the time to sleep in and take my time to get started. I would add an extra hour to my arrival time so I have plenty of time to get out and stretch.

This time because of my new job it just didn’t work to leave on Monday. I have the Leaders meet & greet at 6:00 tonight in Salt Lake City, Utah.

It is Thursday and the alarm woke this very tired body at 2:00 a.m. after 4 1/2 hours of sleep. My journey starts after getting dressed (wearing my Fibro Warriors~ Living Life T-shirt), packing the last minute morning items, taking care of the animals and double checking the list.

At 3:15 a.m. I am in the car heading to the Minneapolis/St. Paul airport. I have a short lay-over in Denver and will arrive in Salt Lake City at 9:00 a.m.

Am I excited now? A resounding YES!

They formed a Facebook group and all of us attending have been messaging brief Introductions and details on our arrival. It has brought back that initial thrill of being asked to be a part of this training.

Last night, I received a phone call from my Mom and Sister wishing me a great trip and how happy they were for me. My fellow Warriors were posting Good Luck Comments and excitement in my reporting what I learned. My dear Celeste left an amazing post on our Warrior page. She is why I am where I am today, heading to Utah for the Leader Against Pain conference. I am going to meet Jan Chambers, President of the National Fibromyalgia and Chronic Pain Association in person.

Yes…. My excitement is back.

Now, I promise to do all that I can to not let down your expectations of me. I will go in as a Warrior and come out being on the way to being a trained advocate for all of those living with a Chronic Pain illness.

Wishing everyone sun~filled days and rest filled nights!
I am a Fibro Warrior~Living Life!

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