WEGO Health 2018 Awards


I am very excited to inform you that I have been nominated for two WEGO Health Awards in the 2018 WEGO Health Awards season. The two areas in which I’ve been nominated are: “Best In Show Blog” (for this Blog “Tears of Truth”) and also for “Best In Show Facebook” for my many facebook groups:

  • (International CRPS Support group, RASE for CRPS (research,awareness,support and education)
  • Dysautonomia Support Network
  • Michigan/Midwest & friends
  • Chronic Pain Support Group
  • Deaf/Hard of Hearing and Living with Chronic Pain
  • People In Pain Unite
  • ASL Song and ASLSuzyQ (these last two are ASL, or American Sign Language groups).

Also for my Facebook Pages:

  • RASE for CRPS,
  • RASE for Invisible Diseases,
  • Dysautonomia Network,
  • Association for Ethical treatment of Pain Patients (AETOPP),
  • People In Pain Unite,
  • Gone But Not Forgotten Friends and Family
  • ASLSuzyQ)

WEGO Healt is a mission-driven company connecting healthcare with the experience, skills and insights of the patient leaders.  They are the worlds largest network of patient leaders, working across  virtualy all health conditions and topics. click here to learn more about their Patient Leader Network.

The WEGO Health Awards  were created to celebrate those who tirelessly support the mission of WEGO Health to empower the patient voice.  With 16 award categories, the WEGO Health awards are the only awards across all conditions and platforms, that recognize the over 100 thousand inspiring Patient Leaders who raise awareness, share information and support their communities but often without recognition.

I want to thank those who nominated me and thought enough of my advocacy/awareness work to think of me for these awards. It means so much to be nominated because though I don’t do what I do in order to get anything from it; I appreciate being recognized for the work that I do. It means that the work that I do voluntarily to help the several communities that I am involved with, is not going unnoticed. Thank you so much for that.

I feel that I deserve the “Best in Show Blog” award because my blog, ‘Tears of Truth”, has become a large network and a plethora of information for patients who live with various illnesses that especially cause chronic pain. There are many resources and so much information here to address patients with various needs. I feel that I also deserve the “Best in Show Facebook” because I serve several different patient communities who live with chronic pain from various illnesses. I have created 6 chronic pain support groups and 2 ASL groups that support Deaf/Hard of Hearing community (including myself, as I am HoH). I try very hard to work closely with several different non-profits and I do not ask for anything in return. These awards, even just being nominated gives me that feeling of being appreciated.

This year, the 16 WEGO Health Award winners will be honored at an in-person celebration in Octoer, co-hosted by the Society of Participator Medicine at the Connected Health Conference. It is very important to me and I would really love to attentd this event to collaborate with industry leaders. Also, I would truly love to meet all of the people who I’ve been working with and talking with all of these years, since 2010 or so, when I first became a WEGO Patient Leader.

I’m now looking toward YOU, my incredibly supportive network to help endorse me for these two awards.  There are two easy ways to endorse me, (*Wordpress does not allow me to put a badge on this blog. Therefore the link is on the column to the upper right side of this blog (on a computer)…or you can easily choose the method below)….that will only take seconds of  your time, I promise! (I would love to be endorsed in both categories because they are equally important.

If I have ever supported you, made you laugh, given you inspiration  or cheered you on to keep fighting – please consider taking just a few seconds to endorse me for these awards. Thank you in advance, from my heart.

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A Million Dreams & Story of My Life -ASL


Hello Luvs,

I have been working on a couple of new song covers in American Sign Language. I thought I’d share them with you as I love to do. This on is the song called “The Story of My Life” by a group called, “One Direction” and if you click on the blue link, it will take you directly to that video.The Story of My Life – ASL

The second one that I have done most recently, is called “A Million Dreams”. It is sung by Hugh Jackman & Michele Williams. It’s a very popular and lovely song from the newest hit movie, “The Greatest Showman”! If you click on the name of this song in the blue link, it will take you again, directly to my You Tube Channel. Please remember to Subscribe to my Channel and you can click the 🛎 bell , if you’d like to be notified when I do new songs in ASL. If you don’t want the notifications, you can still Subscribe, but don’t click on the 🛎 bell, that sends the notifications. Also, please “LIKE” the videos if you enjoyed watching them. Please also “LIKE” the videos if you didn’t enjoy watching! 😂

Here’s the second song in ASL: “A Million Dreams”:

A MiilionDreams – ASL

Thank you so much for visiting my blog and I’ll be back soon with another article for you!

Are You Aware Of #RareDiseaseDay?


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Did you know that “Rare Disease Day” is coming soon, on February 28, 2018?  Do you  know that “rare diseases” aren’t so rare after all?  According to the the National Organization for Rare Disorders, there are 7,000 rare diseases and disorders that all together affect 30 million Americans; majority of these are children.  In other words, 1 in 10 Americans live with and suffer from rare diseases. This day is an annual celebration to recognize and bring about awareness to the public but also to decision makers.  We can each make a difference by either hosting an event, participating in online activities or doing both. Rare Disease day always lands on the very last day in February, the 28th or 29th (if Leap year). Each year we try to increase awareness and knowledge of rare disorders and bring attention to the kind of impact that they have on these people’s lives.  Most of these have no cure.  Sadly, they largely go unrecognized, under-diagnosed and misdiagnosed. Another fact is that the majority of these diseases, about 95%, have no treatments available and no cures.

The U.S. Pain Foundation supports “Rare Disease Day” and therefore we have provided several ways to include this day in your communities worldwide.  We feel that this special day “falls in line with the organization’s mission to connect, inform, empower and educate chronic pain and invisible illnesses.”.  There are many ways that you can can become involved in this event.  One way that you can raise awareness, is by hosting an awareness event table in your city.  You may visit the U.S. Pain Foundation website at the link provided in the above quote, to read more about this day and the events surrounding it. You can also visit the www.Rarediseaseday.org  website to get more background and historical information about this day.  If you would like to participate in worldwide events you can visit:  http://rarediseaseday.us/events.

Other ways to become involved are to: “Save the date” of 2-28-18, because #NORD  will be hosting a #tweetchat (#RDD18Chat) on #RareDiseaseDay at 1:00-2:00pm EST.  You can also retweet some facts, such as this one: “There are 1 in 10 Americans that live with a #raredisease.  That is 30 Million Americans!”  You can download the special Social Media logo’s etc. and post them on your Facebook Cover picture and your profile photo.  There’s also an official YouTube video that you can share on your own Social Media accounts, at:  https://youtu.be/02zR9r-LOfQ.  You can follow them on their USA official links at: Twitter @RareDayUS, Facebook @ Rare Disease Day US and Instagram @RareDiseaseDayUS.  The Worldwide official links are here:  Facebook @Rare Disease Day and Twitter @RareDiseaseDay.  The hashtags that you want to use if you would like to spread awareness via social media are:  #RareDiseaseDay, #RareDisease, #RareDiseases, #1in10, #CuresNow and #NORD.  There is an entire list of ways to get involved right from your own home, bed or recliner; right here at https://www.rarediseaseday.us/get-involved/social-media/#1474047637908-88935dfd-3a29,

The National Organization for Rare Disorders (NORD) are the sponsors of this day and these events. But the participants in “Rare Disease Day” are the National Institutes of Health (NIH), the U.S. Pain Foundation and other patient organizations, government agencies and companies . We also encourage people to plan Advocacy events near their state capital or house to help with issues that are relevant at the state level.  The worldwide theme this year for Rare Disease Day 2018, is much needed research of various rare disorders.  When there is active research being done, it brings people who are ill, the hope they need in order to continue living and trying.

I Am Invisible No More!


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Hello Luvs,

I wanted to post the video that I made for Invisible Disabilities Association. I was hoping to ask you for a favor? I have entered this video in a contest, in order to spread awareness of Invisible Illnesses. Would you please be so kind as to just click on the video below and then watch the 3 minute long Video? Then right above the video, after you click on it, you’ll see the word “VOTE”! Please click on that word and that will cast your vote for me!

Thank you so very much! If you could, I’d be so obliged if you could SHARE the video on your Facebook pages and in your groups, Tweets etc. It would be really awesome to make Invisible illnesses more known! Thank you for your vote, in advance. I appreciate it so much! Ohhhh please always us the hashtag #Iaminvisiblenomore thank you !

My video “I Am Invisible No More” Is Right Here, When You Click!

http://woobox.com/yskmzt/gallery/0by3nprZkI0

Take Our Hand – The US Pain Foundation


Take our Hand- The US Pain Foundation

It’s the New Year of 2018 and I’m reflecting on this past year, 2017. Many people ask me about the US Pain Foundation. They ask me “what does the US Pain Foundation do? What are they doing to help with the Opioid crisis?” I thought I’d explain what they are doing and what kinds of things that I do, as an Ambassador for US Pain.

The first thing to know is that they are not about accolades nor do they have a need to be in the spotlight. They do so much for those of us who live with chronic pain. They rarely ask for anything. I have noticed that when I do fundraisers; they’re more interested in how many people were helped with “Awareness”?

But for right now, I’d really like to inform you of some of the different projects that are going on within this non profit organization. Right now there are so many people being affected by issue of chronic pain patients being under or untreated. They are also being quickly tapered off of their life saving and life giving pain medications. US Pain Foundation saw a need and heard the cries of the pain community and they responded. I also want you to know that they are not all about “rescuing” people; but rather, teaching and giving the tools so that people can help themselves. If you visit USPainfoundation.org; you’ll see a myriad of resources to help.

One of the many things they are doing for the chronic pain community is that they and 31 other patient & professional organizations/groups have submitted a letter to Congress. In December 2017, these groups sent a letter urging Congress not to repeal the Ensuring Patient Access & Effective Drug Enforcement Of 2016. If it is repealed, this would hurt protections for chronic pain patients. This law would stop the DEA from limiting controlled substance pain medication distribution in a transparent way; also lacking due process and/or safety! (see this article: https://USPainfoundation.org/news/-31-organizations-speak-repeal-Patient-access-act/ )

The entire move to repeal was ignited by the “60 Minutes”story”EX-DEA agent: Opioid Crisis-fueled by Drug Industry and Congress”, which was on TV in October 2017. The persons at US Pain who deal with many of these kinds of issues, are: Shaina Smith, the Director of state Advocacy & Alliance Development.and Cindy Steinberg, the National Director of state Advocacy.

The US Pain Foundation is being very proactive for patients during this time of unrest and uncertainty. They have devised a plan for patients.. This plan can be printed out and used by patients during an emergent situation; such as being dropped from their pain physician or if they feel desperate and/or suicidal. There’s an article and resource here: The US Pain Foundation is here to help. Here’s a plan to print out & use if you’re denied pain treatment .

Lastly, I wanted to end with this quote from this article: https://www.indystar.com/story/news/2017/11/05/when-Patients-have-give-up-their-pain-medicine-Opioids/776067001 , that I truly was inspired by, “Legitimate patients with chronic pain are being forgotten,” said Paul Gileno president and founder of the US pain foundation. “The disease of addiction is taking over the disease of pain and everyone is forgetting about the Pain Patient.” It is the truth and the US Pain Foundation is trying to give Chronic pain patients the tools needed to feel more empowered. They also have designed a new app called “Ouchie”, where you can keep a log of your pain journey. Then there is Ellen Smith who is helping with another alternative to Opioids, which is medical marijuana. Ellen is a Board Member and she does webinars and teaches people about the correct use of medical marijuana.

There is a whole Myriad of options for programs and resources found on the US Pain Foundation website. We have Awareness programs, Educational programs, Support programs and fundraising programs. So please go and have a look around at www.uspainfoundation.org . You are welcome to always ask me anything, but please know that the US Pain Foundation is there for all of us!

(These views are my own & not necessarily the views of the US Pain Foundation)

Becoming Incurable Magazine Feature


Hello Luvs

I’m really excited to share this with you today! The US Pain Foundation has teamed with Victoria Suan, the producer, creator & Director of her Documentary “Becoming Incurable “. I’d written to you about 6 weeks ago regarding the feature film etc. But today I want to share this online magazine that she’s made to compliment the video compilations and her Documentary!

I am the middle of 3 persons being featured in this online magazine. I’m being featured for the illness of CRPS. This is thrilling and just so very exciting to be a part of this beautiful project to spread awareness of chronic pain and illness.

Becoming Incurable magazine feature

Introduction To: Inside Incurable Lives


We see so much in print these days about the “addicted”, the “overdoses”, the “bad guys” that are posting incorrect information all over the internet and about the opioid crisis.  Of course it seems as though only those of us living with daily chronic pain, truly understand that the “crisis” is indeed one of the pain patients “falling through the cracks”. Being-untreated or under treated and then committing suicide or having to spend the rest of their lives in agony.  This is the true “Opioid Crisis”.  But then I saw a short clip of a very well spoken, kind young woman named Victoria Suan.  She was asking for volunteers to help with an upcoming video compilation called “Inside Incurable Lives”, that she was doing for Social media.  She was going to follow a few stories of persons living with daily chronic pain and show how it affects their lives. I responded to her request and sent in some video clips; as did several other chronic pain patients. The first Social media video compilation called “Inside Incurable Lives, Episode 1”,  came out in September 2017.  In the second video compilation, Victoria was asking if chronic pain patients would be able to tell her “What one pain medication, would they not be able to live without?” Secondly, “If your Dr. Could no longer provide this, what would you do?”  The second video compilation project, “Inside Incurable Lives Episode 2”, focused on the voices of pain patients and their views regarding access or lack of access to opioid pain medications as well as medical marijuana. Episode  2  finished and posted in October. I was happy to be able to participate in both of these projects. I’m trying to help with this crisis in any way that I can. Later, I will be providing the links to these 2 video compilations for Social media. But first, I want you to introduce you to Victoria Suan, and her feature Documentary “Becoming Incurable”.

Victoria lives in California and since High school, she was interested in becoming a filmmaker. She graduated from Sacramento State with a Communications degree. She started creating short documentaries during college and then afterwards she decided that she wanted to make a feature documentary. She started researching blogs and video’s on YouTube. From there she discovered the chronic illness community. Victoria found through her research, what she describes as “a wonderful support network of people who are giving one another validation as they deal with the frustrations of chronic pain.”  She told me that she was thrilled by what she saw, and inspired. She decided to create a feature documentary about “chronic illness through intimate stories of real people living with chronic pain”. Starting out with her cousin who lives with Dystonia and a friend with another incurable condition, she then found her third featured person for the documentary. She describes the 8 or 9 months of filming as a “wonderful journey”.

The two video compilations on social media, that I participated in, were an extension of her feature documentary. Victoria then made a Facebook page and it became a platform for the chronic illness and pain communities.  She has become a “voice” for those of us who live with pain & chronic illnesses and she is showing our side of this painful journey.   She also wants to do whatever she can so people learn about her feature documentary. 

Before we get to the two video compilations in which the chronic pain communitiy on Facebook participated; I’d like to share some of Victoria Suan’s views about the opioid crisis.  I feel that it is very important to listen to the views of others who are neither patient, politician nor physician. Now that she has become close to several of us from the shorter video’s; I asked what her thoughts and feelings are, regarding what is happening to the chronic pain community? Her response was very heartfelt and thoughtful. Victoria told me that regarding the opioid crisis, she “really feels for the families and individuals that are dealing with addiction. Sadly, there aren’t enough ways to treat addiction without affecting the millions of chronic pain patients in our society.”  She told me that she’d read that Governor Chris Christie blames hospitals and physicians for starting this opioid epidemic. She wondered “how would a person dealing with chronic pain feel about this? How ignored and betrayed they must feel.  Is it wrong to eliminate a torturous level of pain by taking medication as prescribed by Dr.s?”  My own feelings are that politicians seem to not really care as long as it doesn’t touch them or their own families.  Victoria agrees that they just don’t want to listen to this. She feels that as chronic pain patients, we should not have to fight so hard just to be heard, really listened to.  But we are trying to fight because our very lives depend on it.

Victoria feels that it is “sad that one governors personal opinion can do more to influence legislation than the voices of millions of chronic pain patients.” She is happy that there are News outlets such as this and others, along with non profit organizations, such as the U.S. Pain Foundation; that are educating the public about chronic pain.  Victoria thinks that the film industry; especially a film called “Unrest” that is touring worldwide; and her documentary, “Becoming Incurable”, show that efforts are being made to educate and inform the general public about chronic pain.

Lastly, I wondered what she has learned from doing the 2 video compilations and the documentary film. She mentioned that she hadn’t realized before doing this, how difficult it is for people living with chronic pain to “do normal tasks, such as getting out of bed and/or going to the grocery store”.  I think that it taught her and hopefully will teach others about “Invisible Illnesses”.  She says that actually seeing these people in their pain, made her “truly acknowledge what life is like with chronic pain and illness”.  She feels that these projects taught her that each person has their own unique story to tell. She has figured out through these projects, that we are united in our pain yet each of our situations vary widely. I want to share with you in Victoria’s words, what she wants people to learn from watching “Becoming Incurable”. She hopes that people “will see these video compilations showcasing pain patients and stand with organizations that are fighting for the chronic illness community.  If our government continues on this path of neglect, I’m certain that chronic pain patients will be forced to fight a human rights issue.  I think this has already begun, as we are learning the numbers of chronic illness patients committing suicide.  It is important that we speak and act now in order to invalidate a campaign that deems anyone taking opioid medication as a suspect of the addiction problem.

Here are the links to the 2 video compilations of “Inside Incurable Lives” by film producer, Victoria Suan:

https://www.youtube.com/watch?v=RjrJnriz6y8

https://www.youtube.com/watch?v=0CuFEgnz8yA

https://www.flipsnack.com/becomingincurable/inside-incurable-lives-issue-1.html?0=becomingincurable