As an Advocate for the Chronic pain community, I worked tirelessly as a volunteer from 2008 through September of 2018. I have helped several non profit groups, including: RSDHOPE, Migraine Association, STARS (Arrythmia Alliance earlier Dysautonomia/pacemaker support groups), Arthritis foundation, IDA or the Invisible Disabilities Association, RSDSA or Reflex Sympathetic Dystrophy Association, The U.S. Pain Foundation, WEGO Health and more.
This page is a summary of photos to share some of these higher (& lower) points and achievements of my time advocating for the chronic pain community. I abruptly stopped advocating after I had several horrible experiences in the way I was treated after giving so much time and energy with the added pain, to help the pain community. The reason for this page is mostly due to the fact that the U.S. Pain foundation has wiped all of my hard work from their website. They appointed me to their Board of Directors in October of 2017, after I was a volunteer advocate and ambassador for them from 2015. I accepted the position started as a Board Member in January 2018 (but did not get officially appointed until March, 2018)*. I resigned September 2018. The articles that I have written about these experiences are here: Why I Resigned from the USPF & The article about how Ed Coghlan at Ntl. Pain Report actually changed the entire premise & REWROTE an article hat I submitted “Making Peace With My Pain”
While I’m happy that I got to have some of the good experiences, such as feeling good about helping others and giving freely of my time. I’m extremely saddened by the way I was treated and tossed away as though I was some kind of garbage. I have numerous emails from (the interim CEO)-Nicole, Shaina and many others in Upper management of the U.S. Pain foundation; telling me how I went “above and beyond” to be a good advocate and help them in so many ways. Some of these ways that I helped them and some of these other groups were:
1: I did multiple fundraisers for the USPF and other Non-profits
2: I did a large amount of research, writing, videos, blogging and freelance articles for them.
3: I went to several events that they asked me to attend, even though I was sick and in much pain.
4: I went to their “Support group leader training” in Connecticut.
5: I found a venue and held monthly Support group “in Person” meetings in my town. (*The Mayor of my city gave the venue to me free of charge for the USPF)
6: I made videos and did a large amount of research, writings etc. that were never used or published after doing hours and hours of research etc.
7: I went around my city several years in a row and decorated “Beautify in Blue” for the Pain Awareness Month projects. My husband and I decorated 4 shelves annually in the Public Library of our town. There was a photo of me (*see below) published by USPF, showing just how many boxes they had sent to me for all of the events and advocacy I was doing.
8: I was awarded their Highest award, “The U.S. Pain Ambassador of the Year Award” in February 2017 (for 2016). For all of my efforts and work for them, voluntarily and without asking for anything in return.
9. I was approached and asked three times to be a part of their “Invisible Project”. I filled out the paperwork and sent in photos. A day later (all three times) I was called by Jenni or others in Upper management; and told that “Nicole has bigger things in store for you”. When I appeared slightly saddened, she said “My bad??”….. so unfortunately I was not going to be a part of that project…again….again and again. They even asked my husband to be a part of the caregiver edition. He was so good to them as well. They also denied him after all of the free help and work that he did for them also.
10: I was asked to be on the Board of Directors of the U.S. Pain Foundation in October 2017. I agreed to do it and started (in name only) January of 2018. But I was only officially recognized as a Board Member in March 2018. I resigned 6 months later due to finding out about their illegal activities, misuse of funds etc.. Those things happened before I ever joined their Board of Directors. Had I known about any of it, I would not want to ever be associated with any of it.
11. I was awarded a “Special Tribute” from the Governor of the State of Michigan in 2016 for my efforts to help and advocate for the pain community.
12: I worked to obtain many House Resolutions and Proclamations for Pain Awareness, Migraine Awareness, Arthritis Awareness and RSD/CRPS Awareness
13. I took an online course from AMEDCO, regarding Pediatric RSD/CRPS and I tried to spread the news of that course to help RSDSA.
14. I have been a Mentor and guest blogger for Jim Broatch and RSDSA . Before helping them, I was also helping RSDHOPE.org with Keith Orsini. I have done this since 2008.
15: I was first a freelance writer for National Pain Report and later was appointed as a “staff columnist”. I wrote and had published 42 articles from 2016 through mid 2018. (*I was abruptly cut off from writing anymore for NPR after the USPF started taking control over that paper in January 2018)
16: I was invited to be in the Invisible Disabilities “Invisible No More” project, as a featured guest, back in 2012 (estimated 2010-2012?). I also helped them as a team member during Invisibile Disabilities week in 2016/17 and at other times. I would gladly still help them any time asked.
17: After USPF would NOT allow RSD/CRPS to be included during Pain Awareness month after numerous attempts during several years, I tried to reach out to Jim Broatch at RSDSA for help with that matter. He was happy to help and have RSD/CRPS be included during that month of pain awareness. But instead of allowing one of the #1 most painfull illnesses, aka “the suicide disease”, to be included in Pain Awarness month, Upper management at USPF wanted something in return and turned it into “political” issue (instead of putting the pain community first….as usual). They said “NO” and would not allow anything about RSD/CRPS. *If you look back through their entire history at USPF, they never include RSD/CRPS, one of the most painful illnesses, during Pain Awareness Month. Instead they support migraine and arthritis awareness. Those illnesses need support as well, and I live with both of those illnesses too. But RSD/CRPS is by far, the worst and most debilitating of all of my chronic illnesses.
18: I have been Director of Communications for the Deaf/HOH at CIAAG “Chronic Illness Advocacy and Awareness Group) since approximately 2017/18.
19. I was a support group leader for RSDSA and I also was social media assistant for them and for Jim Broatch. I had set up an online “Facebook Live” event for RSDSA, because they brought it to me and asked me to do it. I did research and contacted Dr. L. Weinstock MD. and I had it all set for November 2018. All I needed was for them to give me a password to get onto their page in order to do that event that they asked me to do for them. I had prepared questions and research and put a lot of time and effort into it. But 20 minutes before the scheduled Facebook Live event, I still did not have the password and I had to email Dr. Weinstock and cancel the event. Jim Broatch was supposed to be there and supposed to give me the password. He called on the Friday prior to the Sunday event and told me he was not going to make it because he was “going out of town” (It was an online event?? It was not an “in-person event)…anyways, I never got the password and had to cancel the event. Lastly, after I resigned from USPF, I was asked to post to RSDA’s Instagram account & be Jim’s “Social Media Assistant”. I did it happily and gave freely of my time. After doing that for about a year, I got a message saying that RSDSA was now paying someone to do what I had done voluntarily for that past year or so. They said I could “work with her”, but my feelings were hurt and I haven’t heard from them again. Many people asked me why that Facebook LIVE event was cancelled. I never said anything and never told anyone before now. I ‘ve decided that it was time for me to speak up and let people know that I did not cancel it for my own personal reasons.
20. I found out that I had an auditory/brain tumor in May of 2019. I posted about how afraid I was on my social media. I wrote a blog post or two about it as well. Nobody except for the Invisible Disabilities Association contacted me or gave me any support or encouragement. I never expected anything for my time or my efforts, except I did want respect and kindness. I didn’t get either of those except from IDA and still continue to get that from Keith Orsini (RSDHOPE.org).
Some of my acheivements are photographed below:
I was Awarded a Special Tribute from State of Michigan for my Advocacy work 2016
“R.A.S.E. For CRPS” the Support & Info Group that I est. in 2008