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!

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

Grown Up Christmas List And Two Other Holiday Songs In ASL


Here are a few Christmas songs done in American Sign Language. I am Hard of Hearing and I also used to be an Interpreter for the Deaf. I worked at a school for the Deaf in AZ and in MI, I worked as an Interpreter at University of MI hospitals for several years. I was injured in a MVA in 2002. I can no longer hear well enough, and have too much pain to hold my arms up for any length of time. I interpret songs because I learn the words first and then I feel it in my heart. I love to do this and it makes me happy. I hope you enjoy…First one is “Grown Up Christmas List” by Kelly Clarkson, the second Interpretation in American Sign Language, is “Oh Holy Night” by Mariah Carey and the Third one is “Where Are You Christmas?” by Faith Hill….Enjoy (please Subscribe to my YouTube Channel at ASLSuzyQ if you do enjoy it….thank you so much! :

 

 

 

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

A Body Of Hope



Hello Luvs,

I was reading my news feed today, feeling very much alone in my pain. I have a wonderful husband who does so much and he’s my soul-mate. I have two lovely daughters and 3 granddaughters, ages 1,3 & almost 5!

We had the 2 older ones sleep over last night. So far we have only had the eldest spend the night. That was easy and awesome. I love them all the same! They are my little blessings. But now I’m in so much pain, that I read the following post with tears in my Eyes. I feel like I’m swimming against the current bcz I try so hard to be upbeat and as “good as I can be”! Today’s been really tough and I’m hard on myself ! This writing is beautiful and the writer is not only a long time friend & Facebook friend; but she’s a talented writer. I have reposted her writing here, to share with you her beautiful words. She has a blog called “A Body Of Hope”. I hope you’ll check it out! Without further hesitation, here’s Mary Mattio’s beautiful words:

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~If you’re having a bad day…this is for you
You have every right to feel overwhelmed, as though no one understands, maybe you feel afraid, or even hopeless. As far as I know, everyone living with long term illness understands these feelings. I know I do.

Illness, pain, long-suffering literally deprives the brain of the chemicals and hormones needed to feel happiness and at peace. It’s not pain or illness alone that causes depression, but the high levels of stress, constantly, over a long period of time that can inhibit the production of important nerve cells. The “optimistic” neurotransmitters like, serotonin, oxytocin, and dopamine are no longer in balance to counter the feelings of uselnessness, loneliness, and hopelessness. What might be a passing thought, thanks to the rigors of chronic illness, becomes a spiraling pit of despair. Pain gets into your very soul, and exhausts every resource. 

This month is my 13 year anniversary with chronic pain (RSD/CRPS). When I became very ill 6 yrs ago, after several more illnesses struck suddenly, I felt as though I completely disappeared. Illness and pain swallowed me up.

If anyone is reading this and is being swallowed up, then you know it’s the loneliest feeling in the world to watch everyone go on and live happy lives while you fight for your own life in the shadows. Being drowned by an invisible adversary can seem like a practical joke. Everyone is in disbelief it could be “that bad.” But truly, aren’t we all in disbelief that it’s this bad?

I want to tell you what your brain would tell you if she were allowed to work at her full potential. I want to share what your soul is crying out for that pain has blocked. 

You have a purpose, you always have. Your purpose did not end when you were diagnosed. A calling is not just a job, purpose goes beyond the walls of a building. You are meant to be. 

You are enough. You are just as worthy and amazing as you always have been. Even though you might feel weak, you are gaining strength of character, wisdom, and you are learning things from this battle that no one can ever take from you. Please don’t accept the lie that you’re a failure, you are not. You are in the midst of the fight of your life. We can’t allow ourselves to believe we are losing. If your daughter, son, or grandparent were suffering from the very same condition as you, what would you want to tell them? 

You can do this. Though you may be exhausted and even fragile right now, you aren’t even sure how you’ll go on another day. The pain is pushing you over the edge of what you can bare…but somehow you have risen to meet every single day before this. Remember every treatment, surgery, and frustrating doctor appointment. Never forget how many miles you have walked already. You have overcome so many impossible days. Just get through this day. Tomorrow is not for today. 

You are beautiful. Sometimes we lose touch with our bodies, to separate and protect ourselves. Weight gain or weight loss, hair loss or teeth changes, swelling or skin changes…. we can look in the mirror and see a complete stranger staring back. You may not look or feel as you once did, but you can still get to know this amazing, lovely, and beautiful person. You are worthy of love. (PS. it’s ok to take selfies even if you don’t look like your old pictures!) People love you for all of you. You don’t have to appear perfect, no one is.

You are still the same person. Illness has a tricky way of detaching us from the longing of our past, splitting us apart from the face in the mirror, and isolating us from our loved ones. Who we were can float away, and illness begins to take us over. You are still her! You are still on your journey. Your path, your life, your experience is no less meaningful than anyone else’s. 

One last thing that I think your brain would want to remind you… Things won’t be this way forever. Chronic conditions change over time. Life changes. Our perspectives change. Yes, any day your condition could progress and worsen. Or any day, you could begin to improve or go into remission. The truth is that we hear about progression and complications 10x more (TEN TIMES MORE) than we hear about people regaining health and wellness. There is no doctor or article online that can assure you of what tomorrow will hold. As much as your body and mind yell words like “incurable, degenerative, progressive, comorbidities,” instead let HOPE be your weapon of choice. 

As illness continues to speak its lies to us, we must scream back truth to ourselves so loudly that every part of us can hear!

-Mary Mattio

@abodyofhope
“The road that is built in hope is more pleasant to the traveler than the road built in despair, even though they may both lead to the same destination.”

-Marion Zimmer Bradley

How Great Thou Art -ASL


A beautiful song was in my soul today! I went to church and asked if I could use the chapel! So this is “How Great Thou Art” sung by Carrie Underwood! I hope you get chills like I do!