My Deaf Journey


I was mild HOH growing up. At first my teachers had me sit at front of the class.  When I entered upper elelmentary,  I was given a hearing test at school and ended up having to undergo 5 ear surgeries, starting at age 5. Like many parents, mine just wanted to “fix” me. Most of my hearing loss in the beginning, was from reoccurring ruptured eardrums, repeated head trauma and abuse.

As a preschool age little girl,  I remember being curled up in a ball, in a chair or in my bed, rocking and crying uncontrollably because the pressure in my ear was so painful. I had horrible ear infections, one after another constantly. My mother would look at me as a 4 year old child and tell me “don’t worry, once your eardrums rupture, you will feel better”. Of course, this is true; but why not get help for me right away?  Why not take me to get help before the ear infections get to the point of rupturing my eardrums? Once the school nurses detected a hearing problem in elementary school, then I was taken to an ear, nose and throat Doctor. I had numerous Myringotomies (ear tube surgeries) between the ages of 7 and 12 years old.

When I was 11 years old, I met a Deaf family. They taught me so much about Deaf language/culture/history & community.  They took me to their residential Deaf school, Deaf football games and to Deaf events. I learned my first ASL vocabulary from that Deaf family. I was at their home constantly because they let me babysit and I became immersed in Deaf community and culture.  I had to learn quickly because they were a full ASL family.  Later on, I became an ASL Interpreter after I graduated college. I was a hospital/medical and educational Interpreter. I also interpreted for my Alma Mater & did that for several years. I continued working as a University classroom Interpreter, part time, even after becoming a Mother.

In 2002, I was in a catastrophic car accident. I suffered multiple injuries/surgeries & a traumatic Traumatic Brain injury (TBI). My hearing & vision declined. I diagnosed with a Convergence insufficiency in my eyes, halo vision and Extreme Dry Eye syndrome (because my eyelids don’t close 100% due to the head trauma & stroke). I got special glasses with prisms in them. I also had to get a pacemaker because my brain would not tell my heart what to do. It was at that time that I got my 1st set of hearing aids.

As time went on, my hearing declined more .  In 2014-2016, I had repeated double ear  infections again.  I lost more hearing. Later in 2019 -May, I went in for new hearing aids and they found an auditory tumor called “Cholesteatoma” (Information regarding Cholesteatoma & information regarding Cholesteatoma ). It had “eaten away” at my 3 ear bones/ossicular chain and mastoid bone. My eardrum was torn badly. I lost most of the hearing in my right ear and there’s severe loss in the left. I was also diagnosed with Tympanosclerosis (Information regarding Tympanosclerosis) or hardening of the eardrum. *{There’s more information about this below}.

I’ve been communicating with ASL & have been a part of the Deaf community since 1973! During college, I used to go every Thursday evening to the D.A.D. (Detroit Association of Deaf) bowling events. I had a Deaf boyfriend for quite awhile during those years & hung out in the dorms with my 16 Best friends; who happened to also be the Deaf students. We had so much fun and got into a tiny bit of fun trouble! Lol…

Later, I joined 2 ASL drama groups; after moving in 1982 to Arizona. In one group, “Silent Impressions Productions”, we had costumes & choreography. Tickets were sold & people paid money to see our show “Nights on Broadway ASL”, at Arizona State University. I was also in a Christian ASL Drama group at the ASU Neumann Center. We did ASL Christian song covers & Interpretive dance. That group was called “Silent Praise”.

I had originally moved there in order to work with Deaf PRE-school children! We taught the children during the day & in evenings, weekly; we taught their parents/families ASL. I KISSFIST (love) that job! After a year & half, I missed my friends & my home & so I returned to Midwest!

After coming back home, I did a little modeling & went back to Interpreting at my Alma Mater. I married & had 2 baby daughters. Fast forward to 1991, & I had to take my baby daughters & myself to a domestic violence shelter because I had been abused again for the past 8 years. As long as I felt that my daughters were safe, I stayed in the home. Once I saw my ex husband, kick our dog in front of our daughter, I knew it was time to leave that marriage. No matter how scary it may be “out there in the world as a single Mom working full time”- it was more scary to stay & continue on that way.

After I served him with divorce papers, I was offered a job within 3 days, as a school district interpreter! It was my dream job! Then later, I got a job (to get better health insurance) at a University hospital. I was a secretarial & clerical “float”. I learned 500 people jobs and worked all over the hospital wherever needed. I also wore a pager and was called to interpret all over the hospital. I got to keep interpreting for the school district on 1/2 day Weds. & on Fridays.

In approximately 1994, I made a new friend. She is Deaf & she introduced me to her two daughters & to her friends, who are also a part of the Deaf community. My daughters became good friends with her kids! She and I are still good friends today in 2020.

I had started a “Sign language club” at my daughters’ elementary school. I did it for my friend , her daughters & my own kids too. I also interpreted for her daughters’ IEP’s.

In 1997- our Sign language club “Silent Impressions”(yes…named after my old choreography/ASL group in AZ), was invited to Madonna University (& other venues) to put on a little ASL performance. It was a great time in my life! I was given an award from the school district, called “Volunteers in public schools Award- (VIPS award)”. It was for my volunteer work. I had been the elementary schools’ jump rope team coach. But I also helped: in classrooms, during field trips, in the the library & initiated & ran the Sign Language club. I was honored, but my reward was not that; it was giving inclusiveness to my friend. It was also about educating our children & many others & giving them a good experience along the way, in their lives.

I Re-married & finally to my soul mate, in 1997. We have been happily married for 23 1/2 years. But in 2002, we were involved in a catastrophic car accident. A man drove through a red light. Luckily, my husband only got a few bruises. I was hurt badly & unconscious for 30 minutes. I suffered a TBI, 11 surgeries (along with multiple painful diagnostic tests) & many injuries. These included more hearing loss & vision lowered due to Convergence insufficiency & halo vision. I ended up with 9 years of PT/OT and 3 years of brain injury rehabilitation. I got my first pair of Analog hearing aids, from my ENT & audiologist. Lastly, I had a stroke, a heart attack and a pacemaker! I was diagnosed in 2007, with the most painful nerve autoimmune illness known to mankind, “RSD aka CRPS” (#47 out of 50 on the McGill pain scale). The RSD/CRPS led me to several other connected & painful health issues (EDS-4, Chiari, Gastroparesis, S.I.B.O., Dysautonomia/POTS, Atrial fibrillation & Sick Sinus Syndrome (a heart condition) . I had to go on disability & have been living with mobility aids, including leg braces (AFO’s), loft-strand crutches, a walker & wheelchair etc.

But nothing has been as scary to me as the diagnosis I received after my hearing started declining more and more from 2014 to 2019. I actually was Hard of Hearing and I did fine with ASL and hearing aids. Yes, I can speak but I prefer ASL. I was diagnosed with an auditory/brain tumor called “Cholesteatoma”. It destroyed my 3 hearing bones and my inner ear. I had to have a Tympanomastoidectomy with oscillar chain & Mastoid bone cut & cleaned-out. I did receive a prosthetic Anvil (Incus) earbone also. But I was also diagnosed with “Tympanosclerosis”(Information about Tympanosclerosis & Hearing loss). This means that my eardrums are hardening & will continue. With this diagnosis, added scar tissue & the tumor (which has a 50% chance to return); my hearing will continue to decline. For now, my right ear has severe mixed hearing loss and Left is high moderate/severe sensory neural hearing loss. I also have pulsating Tinnitus. I received new Signia hearing aids in May 2019 and they are a tool. But since the auditory tumor surgery 7-26-19, I identify as Deaf instead of HoH. I belong to Michigan Association of the Deaf & a few online Deaf groups.

I have my own Facebook group called “ASLExpress” & a Facebook page called “ASL SuzyQ”, where I advocate and share Deaf history, culture and ASL. I also have My YouTube Channel @ASLSuzyQ and My Instagram @ASLSuzyQwhere I share Deaf memes, ASL songs & other fun stuff, including Deaf experiences & stories. *Then there is my TikTok page where it is just all in good fun! My TikTok Channel/Page

Link to “This Is Me” in ASL by Keala Settles (from Greatest Showman)

This was me a year or more after the
catastrophic car accident in 2002

This is me, post-op, after my auditory
surgery 2019-July
This T-shirt was a gift from the parents of kids
This is me at my “Silent Praise” group

A newspaper article honoring me for the
VIPS Award

My class with me at Deaf pre-school

We Are Broken But Strong!


This is for my fellow chronic pain warriors (& me)…fighting the ignorance of those who hold the power to help Cpp’s but they’re pushing massage & other complimentary therapies instead! Opioids clearly help some of the pain community. Let our Drs choose what works best for each individual.

We are in pain & we may be “broken”-but we are worthy, we are strong & we are beautiful! Don’t ever give up! No matter how many people try to put you down or try to “break” you even more!!

Link to my YOUTUBE channel at ASLSuzyQ

Please feel free to follow me on YouTube @ASLSuzyQ for ASL(American Sign Language) song covers & to learn about Deaf History & Deaf culture.

HERE ARE SOME LINKS TO MORE OF MY ASL SONG COVERS ABOUT OUR JOURNEYS WITH ALL DIFFERENT KINDS OF PAIN-BUT BEING STRONG THROUGH IT ALL!

1) “This is Me” (from Greatest Showman)

“This is Me” by Keala Settles

2) “Speechless” (from Aladdin)
Speechless from Aladdin

3) “Keep Holding On” by Avril Lavigne

Keep Holding On by Avril Lavigne

4) “Fight Song” by Rachel Platten
“Fight Song” by Rachel Platten

5). “We All Bleed The Same” by Mandisa
We All Bleed The Same by Mandisa

6) “Into the Unknown” from Frozen 2 by Idina Mendel/Aurora
Into the Unknown by Idina Mendel & Aurora from Frozen2

7). “I Dare You” by Kelly Clarkson

“I Dare You”by Kelly Clarkson

8). “Piece By Piece” by Kelly Clarkson

“Piece by Piece” by Kelly Clarkson

9). “Stand Up” by Cynthia Erivo

“Stand Up” by Cynthia Erivo

10). “Broken & Beautiful”

“Broken & Beautiful” by Kelly Clarkson

There are many more ASL cover songs for when you need to feel strong! Don’t ever give up!

*Please feel free to read a small part of my story in the paragraphs beneath each video

Accessibility A Legal Right


Hey Everyone!

This is a great article from Rikki Poynter and it hits home with me, too! Many of my friends who live with either Deafness/Hearing loss &/or disabilities requiring the use of wheelchair,walker or cane etc, may feel a connection to the stress that Rikki Poynter shares in this article.

Some of us are feeling also the stress of not have accessibility to proper medical care for our high impact chronic pain illnesses. This has been constant since the CDC Guidelines were implemented in 2016, without any pain physicians present at the discussions.

I wanted to share this article because I can feel for her experience and so many people don’t “get it”. Here’s the article: http://www.rikkipoynter.com/articles/event-accessibility

For information or questions regarding the ADA or “Americans With Disabilities Act”, please visit: Link to the ADA website

You can follow Rikki Poynter at Twitter, Instagram and Youtube at: https://www.youtube.com/user/rikkipoynter

And on Twitter:
Rikki Poynter on Twitter
(Check out Rikki Poynter on Twitter: I’m deaf and disabled and, you know, stuff. YouTuber & Public Speaker | #NoMoreCRAPtions | PATREON: https://t.co/BsMiMuxDF5 | rikkipoynter@gmail.com)

Link to Rikki Poynter on Instagram

Just a Photo of me with my purple glitter aids
Me with my family in town, on a Summer day
PEASE FEEL FREE TO FOLLOW ME ON SOCIAL MEDIA:
TWITTER:
1) http://www.twitter.com/ASLSuzyQ
2) http://www.twitter.com/ppl_inpainunite
3) http://www.twitter.com/RASEforCRPS
4) http://www.twitter.com/DeafNDizzy
FACEBOOK:
1) http://www.facebook.com/ASLSuzyQ
2) http://www.facebook.com/RASEforCRPS
3)
http://www.facebook.com/peopleinpainunite
TIKTOK:
1) http://www.tiktok.com/asl_suzyq
*(2nd account is: http://www.tiktok.com/asl_suzyq2
INSTAGRAM: http://www.instagram.com/ASLSuzyQ
TUMBLR: http://www.tumblr.com/ASLSuzyQ
MY BLOG: “Tears of Truth”: @tearsoftruth.com or http://www.wordpress.com/tearsoftruth
SNAPCHAT: http://www.Snapchat.com/jewelrymkr ( or Jewelrymkr )

Cholesteatoma, Deafness And ASL


Have you always wanted to learn American Sign Language, but didn’t know where to start?

Well, the best place to learn all of the rules, parameters and the full language, is from a certified, Deaf ASL professor. You should do that if you are able to at all. You should also try to find a Deaf community to hang out with and go to Deaf events. Most of the communities are so amazing and we welcome all levels of ASL. We are excited for you to learn and happy to help. If you want to do that, but you don’t have the money or the venue to take those special classes; the next best place to start, is by heading over to YouTube.

There are several great places online where you can get started learning for no cost. The best and first, is Free ASL classes at Gallaudet . Next, I would say Lifeprint.com & Hantdspeak.com is another, but first I wanted to let you know that I do have some “ASL Basics- Vocabulary” lessons at my YouTube channel :

My YouTube Channel @ASLSuzyQ

The important thing is that you don’t just learn vocabulary, although that’s a great place to start. You need to learn about the language, culture, community and its history! I do have several videos that are a little bit about each of these things. I have one video about “How to get a Sign Name”. There are other videos that include “Deaf President Now” movement in the 1980’s. Also the Sign Language community that was living in Martha’s Vinyard, Massachusetts; in the early 18th century until 1952.

I’ve been using ASL since I was 11 years old. I was babysitting and hung out with a Deaf family of 6. I grew up mildly Hard of Hearing due to recurrent ear infections and numerous ruptured ear drums with scarring. I always had to sit in the front of the class because I couldn’t hear well. Later, when my elementary school performed hearing tests, they informed my parents that I needed tubes in my ears because I wasn’t hearing well. I had multiple operations from ages 7 through 12 or 13 years. However, I did not get hearing aids until much later.

I went to Deaf school events, such football games at MSD (Michigan school for Deaf). I fit right in and felt comfortable. I later went to college and a group of 16 Deaf students in the dorms, were my best friends. We watched “General Hospital” with closed captioned. We went dancing and had some great times together!

Later on, I took a break for a year and a half & went to work at a school in Arizona with Deaf preschoolers. I loved that job. I was ecstatic to find out that I’d beaten out several other candidates for that position because of my skills. I also worked at a Deaf relay center called ADARA or “Arizona Deaf Assistance Referral Association” while I was living in Scottsdale.

After working there for about a year and a half, I went back home to finish my degree in Sign language studies & Interpreting. I then got hired as an educational interpreter for a school district and stayed on Interpreting for my Alma Mater. I got married, had two daughters and 8 years later I became a single mom.

I needed to take care of my girls and I immediately got a full time job with full benefits at the University hospital. I was a “Secretarial float” & wore a pager so that I could be notified when Deaf clients/patients needed me to Interpret for them. I loved my job. At that same time, I was an Interpreter at a school district nearby. I also volunteered as a pro tactile interpreter for Deaf/Blind medical screening events a few times each year.

I continued attending workshops at my Alma Mater and one in particular stands out in my memory. I met an amazingly intelligent and kind man who impacted the rest of my life, in a good way! His name is Art Roehrig and he was a Deaf/Blind guest speaker at one of my most memorable workshops. He told stories about how he’d grown up at a residential Deaf school and discovered that he had Ushers Syndrome, when he was a teen. He shared jokes and told us all about how he was living independently. He was a public speaking and later worked at and then retired from Gallaudet University. I still email with my long time friend, Art.

Back in 2002, I was involved in an Catastrophic car accident. A man ran through a red light and I suffered multiple injuries, surgeries and a Traumatic brain injury. I went through 11 surgeries up until now, and 3 years of TBI (brain injury) rehabilitation. I am left with many medical issues, including several high pain chronic illnesses, chronic pain, a stroke, heart attack and I received a permanent dual chamber pacemaker. Since the car accident, I’ve had vision issues, such as “halo vision” and a Convergence Insufficiency. Also, due to the TBI, my hearing declined even more. Prisms were placed in my eyeglasses for quite awhile and I was fitted with two hearing aids for mild.

My hearing declined over the years and the past 4-5 years it was rapidly declining more. I was waiting until my husband retired this past year, to be fitted with new hearing aids. They’re so expensive ($6,000.00), so I had to wait until we got new insurance, that would help with the cost.

When I went for the hearing test, they were concerned because my bilateral hearing loss had very much worsened. The right side was also now a mixed hearing loss and not only sensory-neural. The ENT ordered a CT scan & later in May 2019, I was diagnosed with an auditory tumor, called a Cholesteatoma. I had a very scary & difficult brain/inner ear surgery on July 26, 2019. I got two new & improved digital hearing aids. But they’ve been nothing but trouble with one thing or another since I got them! We had to pay $1,500.00 of the cost plus $150.00 for the ear molds (which now both have split on me and I’ve only had them for a few months). I’m ready to give up on them.

My hearing bones, eardrum & Mastoid were all diseased from the tumor. I received a Tympanoplasty, a Mastoidectomy (called a Tympanomastoidectomy) & a titanium Anvil, a prosthetic ear-bone. I’ve had Vertigo, a tingling, droopy top, right lip & my tongue has no sensation or taste on the right side, since that surgery this Summer. Oh… and I’m Deaf in my right ear and Moderate/severe HoH in my left ear. The deafness isn’t my problem. The fact that I have to live a lifelong battle with a reoccurring tumor, (that’s like a cancer in the way that it grows into the brain & can kill you. Also in the way it can repeatedly grow back); that is my problem! I have to go back in Spring 2020, for another of the same surgery, possibly. The micro Neuro-Otologist surgeon, told me “to be prepared”. This thing is the “Never ending story”. An endless battle that results in multiple painful & scary surgeries and deafness. But as I said, deafness is not the problem. I’ve been part of the Deaf community since age 11. It’s the lifelong battle with more pain & surgeries on top of the current pain…..that is the major issue for me.

If you’d like to follow me in social media, I will leave the links for you, below:

1) http://www.instagram.com/ASLSuzyQ

2) http://www.facebook.com/ASLSuzyQ

3) http://www.twitter.com//ASLSuzyQ

4) http://www.youtube.com/ASLSuzyQ

5) http://www.tiktok.com/asl_suzyq

6) http://www.facebook.com/groups/ASLExpress (*This one is an ASL info, & help group)

My new Hearing aids:

Justice Served? What’s your opinion?


Here’s a link to Pat Anson’s recent article regarding the sentencing of former CEO & President of The U.S. Pain Foundation, Paul Gileno!

What do you think? Has justice been served?

https://www.painnewsnetwork.org/stories/2019/10/29/former-ceo-of-us-pain-foundation-sentenced-to-year-in-prison

Indivior Inc. Indicted for Fraudulently Marketing Prescription Opioid | USAO-WDVA | Department of Justice


Hello Friends!

I found this article not too long ago. I thought you might want to read it if you are a high impact chronic psin patient or anyone living with psin on a daily basis.

Indivior Inc. Indicted for Fraudulently Marketing Prescription Opioid | USAO-WDVA | Department of Justice
— Read on www.justice.gov/usao-wdva/pr/indivior-inc-indicted-fraudulently-marketing-prescription-opioid

New Card Helps Deaf Communicate With Police


Hello

So I found this interesting article and I thought some of my fellow Deaf/Hoh persons might want to read about it. The link is below and it’s about a card for Deaf/Hoh individuals to have & use when trying to communicate with the authorities. This article is from Minnesota. I hope you enjoy reading it!

www.google.com/amp/s/patch.com/minnesota/northfield/amp/27492735/new-card-helps-deaf-drivers-communicate-minn-police

The Story of My Experiences With USPF


Here’s the link to Pat Anson’s Pain News Network article week of 5-12-19:Misappropriation of funds by the US Pain Foundation

I’ve had some things weighing on my mind lately. I had thought about keeping them to myself because I’m not a person who likes to be in the midst of turmoil. I try to live as drama-free as I possibly can. But a few months ago, I was contacted by Pat Anson, from the “Pain News Network”. I declined to speak about the events hovering around the US Pain Foundation & decided to take the high road and not allow my feelings and emotions take flight. It’s been an entire year & I let “the dust settle”. I waited an entire year to post my story about this. I didn’t want this post to be written with anger or any feelings of revenge. But there are a few issues that have been tugging at my heart and bothering my mind. These continue to nag me in my thoughts.

Since Pat Anson’s articles have surfaced; I’ve read several pieces of information that are now public knowledge. I’ve decided that there are some things I’d like to share because I do have a story to tell. I will only share with you my personal observations, opinions and experiences.

First, I must share that when I was added to the Board of Directors of the US Pain Foundation,(officially on January 31, 2018), I was excited. Around that time, I decided to call one of the persons whose photo I’d seen on the USPF website listed as a Board Member. She was also director of their Medical Cannabis program. I’d been told she was a veteran Board member. I called to ask her a few questions, such as: “What was it like, being on the Board? What do we do as Board Members etc?” She laughed & told me that “there was no real Board of Directors”. She added that they’d never even had a board meeting! I was a bit disappointed at hearing this news. But it was soon confirmed. The Board of Directors of the USPain Foundation, were actually just photographs on the USPF website, prior to January, 2018. There was no true Board of Directors. There had been no board meetings or elections. So….I’m guessing there was there no secretary or treasurer? I’m guessing this means that nobody had to get permission to write checks? Didn’t they have to answer to anyone about how or where to spend donation monies? How does the President, Vice President & Executive Director & other upper management, not know what & where money is coming in and/or going out?

(*I’d  been a “volunteer ambassador”since November 2015. I did Awareness events and fundraisers. All the while I thought I was doing something good. I wanted to be a good advocate and help people living with pain, like myself.)

In looking back, in my opinion, It seems to me that when upper management realized that things had somehow gotten out of hand and that the USPF might be slipping away, they decided to get lawyers and accountants involved in an attempt to “fix” a situation that they’d created. It seemed to have finally become something larger that they could no longer handle alone. Again, this is just me looking back, trying to make sense of the entire debacle.

I had no idea what I was getting myself into. The first meeting was in California, in January 2018. But I was too ill to travel that far and watched it as a Zoom meeting. Nothing of super importance was discussed, from my recollection. After being recruited to the Board, I still had no knowledge of any significance until much later in the year. Also, in January of 2018, they wouldn’t allow me to make it public, that I’d been appointed to their Board of Directors. My volunteer position as Board Member was not added to their website until March that year. Over the following months, I found out what a mess things were and I immediately wanted to resign. I was advised by one of the attorneys, that “it wouldn’t look good” for USPF, if anyone on the Board resigned during that time. (*Even though Dr Abaci immediately resigned from the board when he found out about the misuse of funds in the past).

I was told that we should all stay and help to reorganize & rebuild USPF. The attorneys explained that it wouldn’t really look good for any of the Board Members to resign in the midst of this reorganization. Therefore I stayed for as long as I felt that I was doing something good. Even prior to becoming a Board member, I was given “busy work” & then asked to do research & write two articles for the “Learn About Your Pain” portion of their website. I was asked to research, write and include links with graphics about S.I.B.O and Dysautonomia. I turned in several pages of completed research. Almost a year later, I inquired about when everything that I had done was going to be posted to the “Learn About Your Pain” website? I received angry emails from several members telling me that with everything that USPF was going through, how could I even think about myself? (In Spring of 2018, I was also asked to make a video about RSD/CRPS, that I in fact made and it also was never used). I was asked (3) three times, to be a part of the USPF “INvisible Project”. A 4th time, I was told that I could tell my husband that he was going to be a part of the “Caregiver” edition of the INvisible project. Each time I was invited to be a part of that, I signed video/photo releases and I answered 10-12 questions in complete sentences. I gathered photos etc., and turned them into the USPF’s person in charge of that project with the interim CEO. Each time,within days of handing back my completed tasks (*just remember that I am also a chronic pain patient and was an unpaid volunteer), I received an email from the person helping the interim CEO with that project. She just told me things like “Ooops, My Bad?? I guess the interim CEO has something bigger in store for you later”! This went on for over a year.

In getting back to the true issues at hand, in Or around early Spring 2018, we asked the former CEO to resign. The Board meetings were only and always about the situation that USPF found themselves in, regarding the former CEO. Then in July, 2018; my Pain Management doctor told me that he was going to immediately remove me from my long acting/extended release pain medications (after almost 14 years of doing well on them). He said it was because of the CDC Guidelines.

I left the appointment that day in tears. I feared for my life and what the future was going to feel like. I arrived at home to an email from the US Pain Foundation. It was a survey asking people to tell what they know about Bupenorphrine. Being a board meeting member, I immediately called the interim CEO. I shared with her my shock & dismay about this email that went out to the pain community; the very people who I try to advocate for and protect. I asked her, what prompted this survey? I found out that the foundation had received a donation from the company that makes Suboxone/Bupenorphrine ( Here’s a list of the medications that RBI makes). My exact words to her were “How could you allow USPF get in bed with Andrew Kolodny?” She tried to assure me that Suboxone wasn’t anything like Bupenorphrine (*see photos that are included with this article). I was told I didn’t know what I was talking about and I was mistaken. She went on to explain that one condition of the donation was to get the public to have more knowledge, or to see what the pain community actually knew about Bupenorphrine. Next, I asked the interim CEO if she knew that the drug Bupenorphrine was not FDA approved for pain (at that time), in the USA? I told her it was an addiction medication and that people are labeled an addict once they’re put on Suboxone/Bupenorphrine; even if it’s for chronic pain! She told me that members of the pain community should have access to all different kinds of medications and therapies. I was very upset and I decided to do more research.Bupenorphrine is a weak analgesic that may slightly help those who have chronic pain AND addiction

Along with many among the chronic pain community, I had already been personally feeling that USPF has not been supportive of opioids, for chronic pain. I have written two articles about these medications: About Suboxone/Buprenorphine-and-naloxone and More About Bupenorphrine/Suboxone. I wrote these articles because I felt that the pleas of the chronically ill, the disabled and those of us living with daily ongoing high pain illnesses/issues; were not being listened to. We were not being heard by our Drs, the government or our own US Pain Foundation.

As soon as that conversation with the interim CEO ended; I knew that my time volunteering with USPF was coming to an end. I had been already feeling that they “push” complimentary therapies and medical cannabis without any support for a portion of the pain community who relies on opioids for pain control. They portray complimentary therapies as though they can actually end chronic pain without any help from medications. They publicly & actively support their medical marijuana program. If they can support a Federally illegal substance; (which I’m personally not against when & where it is legal; and only for medicinal purposes), and if they support all methods to alleviate pain, then where’s their opioid program? I feel that people should be able to use Marijuana, Kratom, acupuncture or opioids to alleviate their daily chronic pain. But opioids have been taboo within the USPF. Possibly for some political reason, in my opinion.

Another occurrence that helped me decide to resign after only 8 months of being on the Board of Directors, was when I found out about the movie/documentary that the interim CEO was making with Actress, Karen Duffy. It just feels to me, like she & other upper management persons within the US Pain Foundation are more interested in publishing books and being in movies, than actually helping the pain community. My sadness grew deeper when I watched the movie trailer: Balancing The Pain Scale, a documentary with actress Karen Duffy & interim CEO of USPF . Some of words taken directly from the trailer are “getting beyond the pill bottle”. Once again, USPF was demonizing opioids. I’m not the only one who saw this either. Here is an article that I found from A prominent advocate for the pain community : A Blog Post from Steve Ariens, “Pharmacist Steve”.

The very last straw for me was when the Interim CEO & the rest of the Board, contemplated not telling the USPF “In-person” support group leaders that they were no longer covered by insurance. I was the only Board member who said that I’d have no part of that! If you’d like to read my resignation letter (redacted items are the attorneys names and anything that was not my information to share), it is here: Why I Resigned From The US Pain Foundation

I still find it difficult to believe that nobody else who’d been in upper management of the foundation for several years, knew anything regarding the going out and coming in of money/funds?

After my resignation, I started hearing stories from ex-Ambassadors that involved a couple of upper management persons being involved in some behavior that in my opinion, was inappropriate. Some of this allegedly took place during a few USPF sponsored events. In 2016, July; at the University of New England, “Pain Summit”, my husband and I stayed overnight at a nearby hotel instead of staying at the dorms. It appears that we missed seeing anything first-hand; but according to at least 2 eyewitnesses (one that actually called & showed me some videos), there were high ranking members involved in behaviors that I would consider inappropriate for anyone, let alone, upper management of a non-profit. Especially not during an event sponsored and run by that same Non-Profit.

All of this has been on my mind. I didn’t want to lose my integrity by talking to someone else about all of this. I decided that this is my blog & my own story to tell. I’ve given you my observations, opinions & truth to the best of my knowledge.

Reckett Benkaiser being Sued by 35 states

Who Makes Bupenorphrine?

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**BELOW IS A 1 MINUTE VIDEO SHARING MY CREDENTIALS. THIS VIDEO SHARES ALSO THE VIEWS OF US PAIN ABOUT ME & MY VOLUNTEER WORK WITH THEIR ORGANIZATION FOR ALMOST 4 YEARS:

A YouTube Video with my Credentials

The Lion King -ASL


Hello Luvs!

I thought you might enjoy a bit of something light, to cheer you. If you’re like me, the “Lion King” was my favorite of all Disney movies. I have here, “The Circle of Life” in American Sign Language-(ASL), from that Movie! I also have below, “Can You Feel The Love Tonight”? In ASL….I hope you enjoy! *Please “Like”& “Subscribe” on my YouTube videos & “click the little bell 🛎. This way you’ll be notified when I post a new ASL cover song video, to my YouTube channel. I’m trying hard to grow my audience. Thank you so much!! Here’s the direct link to watch ” The Circle of Life” In American Sign Language: “Circle of Life” ASL

Just for your information, at the beginning, of “Circle of Life”, I Sign “look over there! Look over there”… then I name several wild animals, such as: Lion, tigers, giraffe, elephant, antelope, hyena etc. Then I show them all coming forward as they did for Simba when they presented him at Pride Rock. Then I sign “we all must protest against the Lion named Scar. We will win & there will be peace again!!” (This is what I’m signing in parts where there is just music). Then I’m signing the song itself, to the best of my abilities.

Secondly, I have also done the song “Can You Feel The Love Tonight?” In ASL. Here’s the direct link to that song done in American Sign Language: “Can you Feel The Love Tonight?” ASL

I hope you enjoy these because they gave me pleasure to make it! Thank you so much for following “Tears of Truth”. Thank you also for Subscribing to my YouTube channel!

Silent World


September marks the beginning of Deaf Awareness Month 2019. In light of this, I will be bringing you a few blog posts during this month, about the subjects of deafness, Deaf vs. deaf, ASL, Deaf history & Deaf culture, etc.

Today, I want to take a moment to truly introduce another part of my “story” to all of you. Most of you know much about me already. You also know a lot about my pain journey already, if you’ve been following this blog at all. But you may not know much information about some other aspects of my journey. You might have seen my songs done in ASL (American Sign Language) at my YouTube channel: ASLSuzyQ .

I’ve been married for 23.5 years to my soul-mate & the Love of my life, Craig. He’s been an Elementary school teacher for 40 years now & is retired as of June 2018. We have 2 daughters who are married and 3 granddaughters & 1 grandson: Olivia-6yrs, McKenzie-5yrs. & Kiera-3 yrs & Bryce-9 months. I am high Moderate Hard of Hearing (on left) & (mostly) Deaf (on right). I had been mild HoH (Hard of Hearing) since childhood but didn’t get my 1st hearing aids until 2002. But in May 2019, I was diagnosed with an auditory tumor, called “Cholesteatoma”. Which turned out to actually be a rare disease because it often times comes back (50%/50% chance). It has caused pretty much total silence in my right ear. The Cholesteatoma (More information about Cholesteatoma ) had diseased my eardrum, hearing bones & mastoid by the time it was discovered & removed surgically on 7-26-19.

In short, I will tell you that I started out in life, totally hearing. By age 11, I had so much scar tissue in my ears L>R, from multiple ruptured eardrums, that I had a mild hearing loss. I babysat for a Deaf family with 6 Deaf children. My friend, Judy W. & I babysat as a team. I was fascinated to be able to talk without speaking. I was excited about learning ASL. These kids went to a residential school & they taught me colors, numbers, finger-spelling and everyday conversational signs. We played games like “Monopoly” and we played “school” & “house” etc.

I received ASL books for each holiday and I learned all that I could on my own. I went to college, then it was the only 4-year Sign Language studies/Interpreting program. After my 3rd year, my Aunt (who lived in AZ) called to tell me that she saw a job opening for an “Assistant Teacher” at a Deaf preschool. The requirements stated that a “college degree was required”. But I’d tested out of my first two college ASL classes & I practically lived in the dorm with 16 Deaf friends. We did everything together and I was just accepted lovingly by them. I’d been already Interpreting for the college classes at my own College, & I was doing Deaf/Blind medical Interpreting. So I flew 2,000 miles and applied for the job. I was so very excited to get the job, over others who had their degrees already. I worked at the Deaf school and I found a wonderful church youth group where I was involved in Interpreting for weekly church services. I also got involved in a an ASL drama (with choreography) group, called “Silent Impressions Productions”. We put on beautiful productions of ASL /choreographed songs & dances with gorgeous costumes. People paid $10 each, to come to our production at ASU. I was in “Nights on Broadway”, “One”(from Chorus Line) & “Hello Dolly”! It was such great fun! I was also in an ASL & Interpretive dance Christian group, called “Silent Praise”!

I had the best 2 years of my younger life ! It was such fun! I did miss home & my friends. I also needed & wanted to go back & finish my degree!

I came back home & finished college. Afterwards I was so excited to land a job as a school district Interpreter by day and as a University, “night classes” Interpreter, at my Alma Mater. I later married and had two children. At that time, with 2 small young children, I just Interpreted the night classes for several years. I continued with the medical Interpreting for Deaf/Blind.

I was in An abusive marriage and after 8 years, I got the courage to get my 2 baby girls & myself out! We went to a domestic violence shelter. I was so proud that My babies & I left on a Saturday early evening; & by Monday afternoon I had a full time job as a professional Interpreter for a school district. I Interpreted for the High school, Middle school & Elementary school.

So to speed things up a bit…. I divorced & re-married 7 or 8 years later. In the meantime I was offered a job with much more money & great medical benefits. I would be a Secretarial “float” (meaning that I had to learn everyone’s jobs so that I could cover for them). I had to learn 500 Drs schedules. I was also assigned to be the research secretary for a well known lung transplant doctor. I wore a pager and was paged multiple times weekly; if not daily, to interpret for Deaf patients who came into the hospital for either an appointment or to the ER.

One night that I particularly remember, I got called from home after I’d already gone home; to interpret for a Deaf patient. He was in the emergency room having a heart attack. I had to be precise in telling the doctors exactly how the patient was feeling. It was then, that I realized Just how very important an Interpreters job really is.

All was going well until the end of Summer in 2002. I was with my husband at a Summer art fair on a lazy Weekend day. During the drive home, we were going through a green light when another person, a man, went through a red light and crashed into our minivan. We were “T-boned”! It was classified as a “catastrophic” accident. My kids were not in the car! I thank God for that always! My husband was not hurt, but he was bruised up a bit.

Unfortunately, I was unconscious and ended up having multiple injuries and many surgeries. All in all, I also acquired several high impact chronic pain illnesses. Some of these include: Systemic RSD/CRPS, Polyneuropathy in Collagen Vascular Disease (aka EDS Type 4/heart & vascular), Degenerative Disc, Disease with multiple herniated & bulging discs at C5,6,7 & L4,5 & S-1 (along with spinal stenosis), Chronic Kidney Disease stage 2, Dysautonomia/POTs, a Pacemaker/AFib/Long QT syndrome, RA, Gastroparesis & more, including Cholesteatoma now as well. There’s more but I won’t bore you with all of that! I will add that I suffered a TBI that gave me lowered vision (prisms & convergence insufficiency) & hearing loss (I acquired 2 hearing aids in 2002-3 after the MVA). The TBI was such that I required brain injury rehab for 3 years.

After the Cholesteatoma & Surgery, I now identify as “Deaf/HoH”. The reason for this change (from HoH), is because now I can hear pretty much nothing in my right ear. The left ear is hugh moderate/severe hearing loss. I’ve received two new Signia hearing aids & I’ll be re-tested again each year.

I’ve stayed a strong advocate for Deaf/HoH. I fight oppression, audism & ableism alongside the Deaf community. Please feel free to follow me on Instagram ASLSuzyQ Instagram , Twitter ASLSuzyQ Twitter, Facebook My ASLSuzyQ Facebook Artist/video creator page and my Facebook group ASL Express Facebook group and YouTube My ASLSuzyQ YouTube channel . My ASL group on Facebook is called “ASL Express”. We express ourselves using ASL & with this group, I try to bridge the gap between Hearing, Deaf & Hard of Hearing worlds. I try to expose beginners to Deaf history, Deaf culture & Deaf community. For the more advanced and/or native and/or ASL fluent; we have a comfortable place to share & hang out online!

September is Deaf Awareness Month (short 2 1/2 min video)