Respectfully And Humbly Health Advocate Decides Not To Pursue Awards

Published on September 13, 2016 by Suzanne

Hello Luvs,

If you see the pictures on this page you will notice that I was or have been nominated for a few, “WEGO health Activist Awards” this year for 2016. I was really excited to find out this news. I mean, I worked really hard this year and it’s such a “high” to think that someone thought inspired enough about the things that I have been doing all year. I was nominated for: Best in show: BLOG …for THIS BLOG….now that is pretty cool, right?! Next up is: Best in show : Instagram, Twitter, Facebook and Pinterest. How fun is this, right?

Well, it might be fun, or it might not? I never mind the hard work part. I love social media, computers, gadgets, and technology in general. But I remember a few years ago, when I was a finalist for the “unsung hero” award. I realized that just being nominated was exciting. Becoming a finalist was very fun. I humbly and gracefully accept these nominations. But I am respectfully pulling myself out of this “game”.

I have been a health advocate since 2005. I started out a Chemo-Angel and I’m still in that program. I am a Card Angel, Chemo-Angel, prayer angel, and special assignment angel for the program. When I got Diagnosed with RSD/CRPS in 2007, RSDHOPE.org put me in touch with a “mentor”. This was someone who’d had the diagnosis much longer and could answer my questions and just sort of “take me under their wing”. Later, I became a Mentor for newly Dx CRPS patients, myself; and have been one ever since that time.

I have always worked alone, never really a part of any big group or “family”. I was part of the Orsini family at RSDHOPE.org, since 2007. I still worked alone, made up my own awareness events, and started my own fundraisers. In 2014, I made several RSD/CRPS bracelets. I raffled them off during the month of CRPS Awareness, which is November. I made $250 and sent it in to RSDHOPE.org.. Mom Orsini was so kind and thankful, I’ll never forget her kindness.

So now I have joined a bigger “family” and it is the U.S. Pain Foundation. I joined this group, this wonderful, loving and kind group of fellow “Pain Warriors” just last year in 2015. I love being a part of the U.S. Pain Foundation family. We look out for each other, and they look out for me. My husband and I went to their advocacy retreat in August, this Summer 2016. I/We had some of the most awesome times of our lives. We made real lasting friends and memories to cherish. I have found my little places in the pain world and they are with the U.S. Pain Foundation and RSDSA. I have more than enough to keep me busy and they always tell us to “take care of ourselves first”. We cannot be any good for anyone else, if we aren’t taking care of ourselves first.

I have great respect for the people and the organization at WEGO Health. I have done some research for them this year and enjoyed the online discussions afterwards. I got to meet “Julie” and I have become close to her. I would and will always help them at any time they need an extra set of eyes, hands or ears. I feel like our organizations together can empower pain patients by working side by side and giving a sense of “belonging”. This then makes us feel less alone on our pain journey.

I am very proud that WEGO health recognizes health activists and advocates annualy. But I am very happy to have been nominated because that nomination alone is a little bit of validation that I am inspiring someone and/or making a difference. To me, this is my “winning”. I want to do wonderful things and help the underdog, the sick, the people with chronic pain and invisible illnesses. I honestly, do not want to spend my time getting people to vote for me so that I can “win” an award. I have my “win” and it’s in my heart and soul. My “win” is hopefully that I’m helping others like myself. I pray that I am spreading HOPE and even inspiring others. We need to keep HOPE alive in order to make sense of some of the outrageous things that have happened lately in the world of chronic pain patients. We cannot let things turn dark or lose HOPE. We have each other and together we are empowered and we are strong. This nomination is enough for me and I thank you so much for those because that is my win, just being nominated.

This month was very busy and the next few months are going to be very busy for me. I have full body /systemic CRPS, along with many other health and pain issues from “A to Z”. I need to put my energy into raising awareness for Chronic pain and for U.S. Pain Foundation. Spreading optimism and positive energy is where I wish to be. I will also be very busy with the quickly approaching month of NOVEMBER. It is the month of spreading awareness for my invisible most painful illness of Systemic CRPS! I will be on the front lines with RSDSA, raising awareness and hopefully fundraising for them during this upcoming November 2016. As I’ve said before, “HOPE” is a verb. You must DO SOMETHING in order to have it. Then you must continue to do something in order to keep HOPE ALIVE. I just prefer to spend my time helping others, tweeting, writing and blogging for the pain community and the RSD/CRPS community. I don’t want to spend my time begging for votes from people and bothering everyone I know to vote for me every day so that I may be recognized or “win” something. I am winning now. I am winning half the battle just by trying to be as kind and loving as I can to all people I meet. I am winning by spreading awareness and optimism and Hope. If I can keep one person’s HOPE alive, then I have already won. If I can keep my HOPE going along with it, that ‘s all the better!

Thank you so much everyone for your kind words and your faithfulness. Thank you for these nominations below and I will wear them with pride. I want to keep inspiring and winning the war against stigma of invisible illnesses and chronic pain patients. I want to fight against our losses in the medication issues we face now days. This is where I want to focus my little bits of energy each day. I want to stay focused on the issues stated above and not on myself and “me, me, me” . I prefer to focus on YOU, my chronic pain family and on my darling very young granddaughters. With these I have JOY along with HOPE and that is the best of both worlds for a chronic pain patient. I thank you again and I humbly want to withdraw from the WEGO Health awards 2016. Good Luck everyone.

Suzanne

Hello Luvs, I am a survivor first! I am also a Chronic Pain Patient who is hard of hearing and lives with Systemic-Full Body RSD/CRPS. It is the highest form of chronic pain, at #45 on McGill Pain Scale. Along with RSD/CRPS, I live with several other high pain chronic illnesses. In May of 2019, I had a brain tumor/auditory tumor called “Cholesteatoma” found. In July 2019, I had a Big surgery called “Tympanomastoidectomy” with a prosthetic Anvil-hearing bone to replace my diseased bones & oscillar chain. I’m Deaf/HoH & wear 2 hearing aids. I am a proud member of the Deaf community. In an attempt to keep my spirits up & to help others, I am involved with a few Awareness & Advocacy activities online: 1) I continue to be a mentor for newly DX RSD/CRPS patients for RSDSA & I do guest blogging for them 2) I'm a blogger and freelance writer 3) I’m a Patient Leader for WEGO Health 4) I’m the Social Media Assistant for Jim Broatch at RSDSA. In the recent past; I’ve helped IDA during Invisible Disabilities Awareness weeks & was featured on their "Invisible No More" YouTube Channel in 2010 or 2012. On other Social Media; I volunteer by teaching American Sign Language vocabulary for the "Deaf Socials”. I not only blog for my own therapy of sorts, but with the hope of helping others. Some other areas in which I try to volunteer when Im able, are: 1) I've been a Chemo-Angel, Card Angel, Special Assignments Angel and Prayer Angel for the "Chemo-Angels" program since 2005. 2) I've been a Patient Health advocate since 2007 3) I also have a sign Language Youtube channel where I post ASL Covers of Many different kinds of uplifting songs. (*The ASL Youtube page is found at: www.YouTube.com/ASLSuzyQ). Along with doing these things; I have held awareness events, fundraisers and have helped with other programs. In 2018, I was appointed to the US Pain Foundations Board of Directors. I stayed on for only 9 months due to internal turmoil & corruption. I tried to stay to help rebuild USPF, but it felt to me as though things went from bad or worse. My integrity pushed me to leave USPF behind and I resigned 9-2018. I always say that "HOPE is a verb, and in order to have it, you must do something". To keep it, you have to keep doing, trying and not give up. Most everything you need to know about me, or to find me on Social Media, you can find at: about.me/suzydukettes ...OR at TearsofTruth.com **I am not a Medical personnel nor do I claim to be an expert regarding any of the subjects I may write about. I write from my own experiences. Also, Please don't copy or reproduce any part of this blog without my permission. Thank you!