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

No Pain Act


If you are a person living with high impact or intractable pain, this is going to affect you greatly.

Please read the article below and see what our government wants to do with persons after surgery. Also how they want to treat the chronic pain population! This is ludicrous and it’s full of horrible lies! What needs to happen before someone in power, with an intelligent mind, helps us?

This is terrible!!! Bad for all CPP’s https://www.congress.gov/bill/116th-congress/house-bill/5172/text?r=1&s=1&fbclid=IwAR3w6u9IAsALdca5cBvWJRXrzucDwbYi4vmhWdYv-Gexyj5R2HRWjk0mNMs

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 )

Testimony From A Pain Patient, Re: Suboxone And Bupenorphrine


This is an email that I received from a chronic pain patient, Chuck Malinowski. He wanted to let me know about his experience with Suboxone/Bupenorphrine. He asked me to share it, after he had read my 2-3 articles about these harsh drugs that are being forced upon chronic pain patients at this time. The side effects from these partial opioid agonists, are much worse than our average opioids. While their analgesic effects are very low. They don’t do much in lowering the high impact pain that many people with long term, painful chronic illnesses live with. They have, however been proven to take the edge off of some lower pain illnesses in drug addicts who have to take it bcz they are unable to take “regular” opioids. The data suggests that it only really helps a little bit with addicts who need a bit of pain relief.

All of my research is backed up and linked to articles and research. Some is straight from the manufacturer of Suboxone/Bupenorphrine:

1) Regarding Bupenorphrine & Suboxone

3) About Suboxone, Bupenorphrine & Naloxone

4). More About Suboxone & Bupenorphrine

Here are some links to more articles where I researched information and came to these conclusions:

*************************************

(*This is where I got some of this information):

1. https://www..com/suboxone-creators-shocking-scheme-to-profit-off-of-heroin-addicts

2. https://www.drugs.com/suboxone.html

Articles that Explain The Bad effects of suboxone, bupenorphrine etc.

1.  Why Suboxone Treatment Can Be Harmful

2. The Suboxone Conspiracy

3. the ugly truth about suboxone withdrawals

***Below is an article straight from a patient:

Here is one Testimonial:

“Absolutely do not let your doctor put you on buprenorphine.
DO. NOT. DO. IT.
Unless it is an absolute life-threatening medical emergency, do not ever allow anyone to put you on either buprenorphine or Suboxone, which is a medication made with buprenorphine and even worse, and much more expensive.
Buprenorphine causes such a severe, and rapid physical dependency that after only using a comparatively small dosage, 16mg per day, for a single month it will take you a minimum of four, but probably five or six months of absolute hell to get off of.
This is not a medical opinion, or medical advice, this is the reality of what I am now living with, and have been for more than 10 weeks.
I was put on buprenorphine when my implanted pain pump ran out of morphine sulfate and I went into severe acute opiate withdrawal.
It was basically an emergency situation, the level of medication for my pain pump was the oral equivalent of 160mg of morphine a day, it was severe opiate withdrawal.
I did not have an addiction to opiates because this was intrathecal morphine – intrathecal delivery is when the medication is delivered in liquid form directly into your spinal column – but my body had a tremendous physical dependency.
Even so, I seriously regret being put on buprenorphine even if it was on emergency basis.
I was on 16mg of buprenorphine per day for five weeks after getting out of the hospital following treatment for severe acute opiate withdrawal.
The treatment was being put on Suboxone, later changed to just straight buprenorphine.
Within three weeks I started experiencing severe migraine headaches, ear aches, severe abdominal pains, diarrhea, severe sleep disturbances in the form of horrific nightmares – nightmares so bad I was afraid to go to sleep.
I also experienced drastic changes in body temperature, one minute I felt like I was roasting alive, the next minute I felt like I was freezing, sometimes I felt both at the same time.
I have been trying to get off of buprenorphine for 10 1/2 weeks now. I have been using every trick in the book to manage the horrible withdrawal symptoms. Herbal supplements, herbal teas, detox supplements, vitamins, OTC medications, etc.
And the withdrawal symptoms are truly horrible, even when simply reducing your dosage by 25%. It’s just as hard to cut your dosage from 5 mg a day to 4 mg a day as it is to cut your dosage from 16mg a day to 12mg a day.
This means that the closer you get to 0mg a day the harder it is to reduce your dosage, because you have to keep doing it by a relatively small percentage, 20 or 25% day over a period of two or three weeks.
It is so bad it gets to a point where you have to cut from 2mg per day, to 1mg per day – if you can even tolerate that big a cut at that point – to 1/2 mg per day, to 1/4 mg per day, to 1/8 of a milligram per day – and, according to my doctor, it can take weeks to do it. It took me 3 1/2 weeks of working at reducing my dosage from 6mg a day to 4mg a day before I could tolerate 4mg a day. It was extremely difficult, and painful every step of the way, and even so, I am suffering horribly.
Today is day number seven at 4mg a day. The last week has been unimaginably horrible – the entire process is unimaginably horrible – today is horrible, and I expect that I will feel like this for another week or two before I am stable at 4mg a day. 
Once I am stable – comfortable – at 4 mg a day I can try to start cutting my dosage to 3mg a day, and the entire nightmare process described below starts all over again, although in truth it never really stops it only gets less horrible, until you try and make your next dosage reduction.
At times feeling like I am burning alive, I feel like I am on fire inside and out. I frequently feel like somebody has put some horrible mind-bending drugs in my drinking water. Uncontrollable shakes and tremors. Uncontrollable whole body spasms were every muscle in my body suddenly goes completely rigid. Diarrhea. Severe sleep disturbances from absolutely horrible nightmares – my neuropsychologist tells me that nightmares are very common with buprenorphine. And you only have the nightmares if you’re lucky enough to be able to sleep in the first place. Or if you can even stay asleep because you’re going through such drastic changes in body temperature that you are frequently waking up and turning the fan on, or turning the fan off, or getting rid of the blanket, or pulling the blanket back on. 
Or, if you try and reduce your dosage a little too much, a little too quickly you wake up drenched in sweat with your clothes soaked through.
If you try and reduce your dosage a little too much, a little too quickly all of the above mentioned withdrawal symptoms are magnified several times over and it literally becomes a living hell. It can be as bad as full-blown acute opiate withdrawal from a high level of opiates. These are both things that I have lived through, so I know this from personal experience. 
Simply trying to get off of buprenorphine by slowly reducing my dosage over the last 10 1/2 weeks at a time has unquestionably been the single most difficult, painful and horrific experience of my life, aside from more than 10 years of Reflex Sympathetic Dystrophy.
I have advanced Reflex Sympathetic Dystrophy, also known as Chronic Regional Pain Syndrome. RSD/CRPS – as well as Trigeminal Neuralgia – has been called the most painful condition there is, it is also sometimes referred to as  ‘The Suicide Disease,” so when I say that getting off of buprenorphine is the most horrible and painful thing I have ever experienced that really means something.
I’ve already I’ve been weaning myself off buprenorphine for 10 1/2 weeks and I still have another 12 or 16 weeks to go – if I’m lucky. It may take even longer. And from what I have read, even once I have stopped taking buprenorphine completely, I can expect another month or two of significant withdrawal symptoms in the form of depression, anxiety, lethargy etc.
It is my personal opinion, based on more than 15 weeks of personal experience of being on buprenorphine, and 10 1/2 indescribably horrible weeks of trying to get off of buprenorphine, that this is a horrible medication, and for a chronic pain patient to use it as an alternative to opiates is a horrible mistake.
It is my personal opinion, based on personal experience, that putting chronic pain patients on either buprenorphine or Suboxone and telling them that it is a safe and effective alternative to opiates is a horrible scam.
It is my personal opinion, based on personal experience, that putting chronic pain patients on either buprenorphine or Suboxone and telling them that it is a safe and effective alternative to opiates is not only medically irresponsible, it is an outright lie.
Getting off of 40mg of hydrocodone per day after six months took two weeks and was no more unpleasant than a mild case of the flu.
With buprenorphine, it took 3 1/2 weeks to simply reduce my dosage from 6mg a day to 4mg a day and it was freaking horrible. I am still having extremely unpleasant withdrawal symptoms after being on 4mg a day for a week, and I expect this will continue for at least another week before I am stable.
STAY. THE. HELL. AWAY. FROM. BUPRENORPHINE.

Chuck Malinowski

******************

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:

Pondering Pain Awareness Month 2019


Hello All,

I just wanted to let you know that after a year of contemplating what I wanted to say, I wrote my thoughts about what happened between U.S. Pain Foundation & me last year in September 2018.

During my time as a very active Health/Pain Advocate, I achieved a few proud moments that I would really like to share with all of you:

1: I was awarded a “Special Tribute” from the Governor of the state of Michigan (Governor Rick Snyder) in 2016

2: I was the runner up finalist for 2013 WEGO Health “Unsung Hero” Award

3: I have over 42 published articles with the National Pain Report.

4: I was awarded the “US Pain Ambassador of the year award 2016”

5: I was certified as an in-person support group leader & ran a support group in my city for chronic pain & RSD/CRPS

6: I was accredited in a pediatric course for RSD/CRPS via AMEDCO & RSDSA

7: I was appointed to the Board of Directors for the U.S. Pain Foundation

8: I was honored in my hometown, with a Newspaper article

I didn’t do any of what I did, in order to get something in return. But these were amazing rewards after so much time went into my multiple US Pain Foundation projects, my writing, videos, Support Groups, getting proclamations & doing many many Awareness Events for USPF, RSDHope & RSDSA.

The Link to my 1 minute You Tube Video (1 minute long)

I’ve been contemplating writing my side of the story; after severing my ties with the US Pain Foundation in September 2018. I have my story written and published. If you’d like to read it, just go back one blog post before this one.

Below are a few photos that remind me to keep going when I sometimes feel like giving up. I am strong and so are you! We can do this together!

Fear Instead Of Trust


Hello Luvs,

Sorry I’ve been quiet for a little while. I recently went to get new hearing aids. I was so excited to get new ones after 10 + years with my old Rextons. I was awaiting new insurance after my husband retired.

I went to see the audiologist & afterwards she asked if I’d be willing to see the nurse practitioner. I agreed, & afterwards they told me that I needed a CT scan because my hearing had declined so much more on the right side. They set up an appointment with their ENT Dr., the day after we returned from visiting our daughter, son in law & grand babies. I was a bit curious as to WHY they were telling me to come the day after I got home? I would be in pain and exhausted. But it never entered my mind what I would find out next!

So, when we were in Texas, I got an email message telling me that my CT results were available in the hospital’s portal. I know there’s a disclaimer stating that “you can find out things about the gender of your baby, HIV or other illnesses, even cancer”. In other words, do not look if you don’t want to know until you’re sitting with a Doctor.

But I’ve been through a car accident, deafness, multiple chronic pain illnesses & approximately 9 surgeries just since that accident. I can handle it, right? It can’t be bad if they already put it in the portal…can it?

It’s not bad…. it’s worse than that. I’ve never been so terrified in my entire life! I don’t even know how to verbalize my fear this time. There’s no way around it. I can’t go over or under it. I am being forced to go through it. I’ve been diagnosed with a Cholesteatoma. If you see the #cholestatoma or #cholesteatomasucks on Instagram, it looks like a horror movie. I’m not kidding! It’s really terrifying and people get these horrible skull base surgeries. Facial nerves, worsening deafness and brains are involved.

I found out that I have to have my hair shaved on the right side above my ear. My mastoid bone is affected; as are the 3 bones needed for any hearing. My skull will be drilled and after a 3-4+ hour surgery and more pain on top of my full body RSD/CRPS & other high pain illnesses; it has a 50% chance of coming back!

Anyways, I’ll write another post after I process what will happen tomorrow morning 6-10-19. I’m seeing a skull base/neuro/ear surgeon at 8:30 am tomorrow/Monday morning. I’ll get my questions answered, I hope? Will he be kind and compassionate? Will he help my post-op pain?

I saw my pain Dr. this past Thursday. I also saw my GP this week. The GP was so kind and first time ever, she gave me a hug. My pain Dr has turned from Dr Jekyll to Mr. Hyde over the past year. I’ve never failed a drug test or run out of meds early! I’ve never done anything wrong, yet he’s treated me less than human now for months! Before he’d even accept me as a new patient; he ordered me to stop taking my “quick acting” pain medication. It was something I’d been taking for 13 years (*my former Dr. of 12 years had prescribed it, but then one day he just vanished. That’s when I was forced to find a new Dr.).

In July 2018; he told me he was stopping my long acting pain medication… “that day”! No tapering just stopping it! I did not cry or get upset but I asked “why”? He told me “it’s illegal now and if I help you, I won’t be able to help all of those other people “!

I got him to listen a tiny bit because I reminded him of my stroke and heart attack in the past. He decided to give me one more month. He then said in a nasty tone that he was doing that “to get me psychologically ready”! Really?? It has zero to do with my psychological status and everything to do with high impact chronic pain. Of course he “covered himself” by offering me a different, long acting medication that I cannot take because of issues with Gastroparesis & not being able to metabolize a long acting oral medication. My GI Dr wrote him a letter & told him just that! The pain doctor just said, “This is bullshit! His medical license isn’t any better than mine! If he wants you to have that pain medication, let him prescribe it”! Well, of course He’s a GI doctor and he can’t!

I had my other physicians telling me that “it was unethical for my pain Dr to taper me so quickly!” They said it should have been 10% lowered at a time! But nobody was there to save me and I had to accept it and try my best to move on & keep going. I did it myself when I was told to get off of the quick acting medication. My body physically did not feel well for awhile but I never once craved it or wanted it in my mind- not ever! Then I got off of that long acting medication and once again, I did it myself! You’d think my pain Dr would respect me just a little. But instead, he’s treated me in a demeaning, disrespectful manner ever since last year in March of 2018.

I told my pain doctor that I’m going to have to have this really scary skull surgery soon. That I’m seeing a neuro/skull base/ear surgeon. He was so cold, uncaring & horrible that I truly cannot believe he’s a physician! He told me that I shouldn’t behave like I’m “too afraid” or the surgeon may refuse to take my case! That’s insane if you ask me! What high impact chronic pain patient, headed for hair shaving, painful head surgery wouldn’t be afraid? I’m literally frozen with fear inside! But I’m strong, resilient and I’ve been a survivor through childhood abuse, horrible teen years with my kids, abusive marriages and a catastrophic car accident. Since the car accident, there have been 9 surgeries, 2 pacemakers and several metal screws and implants embedded into my body.

I can do this! Right? Can I do this? Do I have a choice? What did I do that’s so terrible in my life? I have tried my best to be a good person & to help others. I’ve been a Chemo-angel since 2005. I’ve written countless letters, made numerous videos and I’ve met with & spoken to legislators regarding this fake opioid crisis! This horrible and torturous pain crisis that’s killing innocent people everywhere.

Now comes the big question, what happens with my post-op pain care? My pain Dr told me if he was my anesthesiologist, he wouldn’t give after care post-op meds because of “risk for complications”! Gosh… I’ll bet if it was his skull being drilled, he’d be asking for some pain relief medication? He acted like I was getting a hangnail removed! Anyone else who I’ve told, says “oh my goodness, that sounds scary!”

So, my friends, here we are on the eve prior to the appointment when I’ll get all of my questions answered, I hope! What do I ask? How do I ask it? Will I be judged? Will I be too complicated and will he “run”? Will he really not help me just because I’m afraid? I’m not acting out hysterically. I’m not crying in front of the Drs. But I’m deeply scared and I’m having horror flick, bloody, stabbing nightmares! I don’t even know the surgery date as if this post. But I’m pretty sure I’ll know by the time most of you read this.

I promise to let you know when it will happen. If anything happens to me, please don’t forget me, OK? I love so many of you. I’ve seen so many of my friends in pain pass away over the past few years…it’s sad and I miss them a lot (Connie, Cyndi “Maw”, Theresa, Gwen Barbara, and Dawn Anderson most recently).

I’m not being morbid, I promise I’m just afraid. I feel less strong as I get older now. I’m 57 years old and was just looking forward to enjoying retirement with my soul-mate; my husband. He retired last June and we’ve had one thing after another come up. I’d really like to take a breath and enjoy some period of time in my life, for a change. We have 4 darling grandchildren. I just want to hug them, love them and enjoy them as much as possible. Will I ever get to do that now?

Oh…. & last but not least, I told my father about this upcoming surgery. I told him that “I wanted my mom more than ever right now” (she died in 2002). He told me that through her cancer etc., there were many times she “needed things“(he was telling me that I wasn’t there for her)! Well, I’ll just share with you all that I tried prior to my catastrophic car accident, to be there for her. I showed up at the hospital even after being told “she didn’t want me there”. I got there and I was told to leave. I was the only person allowed by the nurses, to sit with her in PRE-Op for 2 hours. We had 2 hours of alone time and it was once in my life that we got along & she wanted me around, it seemed? It was very nice, actually. But then the entire duration of the surgery, I was bullied, mocked, disrespected and literally treated like scum under a sink, by my Aunt, my 2 brothers and my dad.

Please pray for me so that I can be strong like I used to be and like I usually am. I need strength and . I’m terribly frightened tonight as my fate lies in the hands of a stranger that I will meet in 7 hours or so. I have heard & seen many horror stories of pain patients like me, being denied proper post-Op pain management. That fear is probably my biggest fear of all, or in the top 3!

Oh yes, I almost forgot to tell you what my Pain Doc said before I left his office on Thursday. He told me he was “OK with me getting the 3 days of post operative pain control from the surgeon”. He told me to “not accept the post-op meds if they just give me Tylenol with codeine, because that would be like a baby aspirin for me”!

In 2013, I had a full pectoral rebuild and new pacemaker. My cardiologist was wonderful to me! Things are so different now! Im feeling like the powers that be, the government just want persons like me to be gone and out of the way. But I’m still a human being. I want to live. I want to travel even a little. I want to be a grandmother.

I promise to write a quick post as soon as I process and know what’s happening & when the surgery will be.

Thank you in advance, for any and all prayers, positive thoughts & energy sent my way.

As I await my upcoming appointment I would love to be able to sleep. But when I’m really afraid, my GI tract takes over. It’s as though I’m on “auto pilot”. I get overwhelming stomach nausea and flu-like symptoms. THATS how fearful I am feeling. I’ve tried to control it but it’s a combination of PTSD, Dysautonomia & a highly over active “fight or flight response’.

In conclusion, I have a final request: Now is NOT the time to tell me a horror stories regarding any of your past head, skull or brain surgeries. When I recover, I promise…..then I will be glad to listen, help and share etc. Also, it’s such a shame in these days of crazy & draconian policies, that we all have fear instead of trust in the entire “system”.

Sending you love and light!

9 Pieces of ‘Health Advice’ It’s OK To Ignore if you Have Chronic Illness


Hello Luvs,

Well, I’m sure that you all have those friends &/or that family member who always has “advice” for your chronic illness? Don’t you just want to make them feel how you feel for about 30 minutes, at times? Let them feel the pain and suffer as you do, just for awhile? Better yet, don’t tell them that it’s only for 30 minutes! Let them think they’ll feel that way forever; for life! No end in sight just like you(us) and no cure! What if they thought they had to live with it forever? Do you think they’d be changed?

I get so tired of people giving advice, when they have absolutely no idea what it’s like to look pretty much “fine” on the outside; while feeling so much pain & fatigue.

9 Pieces of ‘Health Advice’ It’s OK to Ignore If You Have a Chronic Illness https://themighty.com/2018/12/bad-health-advice-chronic-illness/

Are Imposters Preying On Unsuspecting Patients In Our Pain Community Again?


Hello Luvs

Once again I’m so sorry to be giving the news regarding the possibility of imposters (or at the very least, these are persons who don’t have the best interest of our pain community in their hearts) infiltrating our pain community. Last I wrote about this subject, was a month ago, inside of several groups, to warn them! It was regarding the notorious “Kate Ashworth” aka “fake RSD/CRPS guru”(see article link below). She was back again; hurting unknowing chronic pain patients! Those affected, just happened to be persons who also live with the unbearable pain of RSD/CRPS. (To find out more about RSD/CRPS, please visit: For Real Facts & Information About RSD/CRPS, follow this link to RSDSA Home Page (Reflex Sympathetic Dystrophy Syndrome Association)

*(To Read the article about the imposter,“Kate Ashworth”,who recently came back a second time & infiltrated the RSD/CRPS community; visit this link: This is the Link to the article about Kate Ashworth, an Imposter to the Chronic Pain Community) “Strangers Among Us”

On Tuesday night 3-6-29; I saw a message from a long time RSD/CRPS friend on Facebook. I saw the message very late in middle of the night and it was written by Mary Mattio, in a “closed & secret” Facebook support Group for RSD/CRPS. Posting with permission, this is what I read at approximately 11:30 pm:

I’ll show you everything that was written underneath. But first I want to say “thank you” to Mary Mattio for posting about this to the Facebook group, . When digging deeper, I’d like to say “thank you” also to Tracey Tipton-Morales & Marisa Gravett for their “detective work”, involvement and postings. But we need to all give a special thanks to Sarah Lesley, for being the first to figure out all of this mess which I’m going to try to explain. So thank you to everyone who’s been involved in getting the word out, sharing, reporting and blocking these alleged fakes.(I have to say “alleged” but I believe it is true, with my whole heart!)

This was the full post shared from Sarah Lesley & Marisa Gravett:

⚠️ ATTENTION CHRONIC PAIN COMMUNITY⚠️

* Shared from Sarah Lesley & Marisa Gravett *

Okay CRPS Community: If you are in the group “RSD/CRPS and Neuropathic Pain Syndrome” beware… This was brought to my attention this morning. One of the admins actually works for a treatment center that focuses on getting pain patients to stop talking about their pain, basically making it seem like it’s all in our heads. I just saw a YouTube video shared in a post on that page this morning of him doing a presentation about his research and recovery centers and how it focuses on getting pain patients to stop focusing on their pain and to be able to return to be active members of society again. Basically making it sound like we don’t really need medical care, treatment etc…

I am infuriated at some of the things that I have seen and found out. We believe that many of the admins are either fake or using fake names and or involved in depth with Dr. Rand and his treatment centers as one of his treatment centers is referred to as the Bay Area and the last name of many of the admins is Bay…

Think of this as a conspiracy theory if you wish but I have just seen with my own eyes a YouTube video by Dr. Rand speaking about these treatment centers and it is very clear that this group and possibly other groups that we may all be involved in with similar admins, maybe using the information that we give against us as research, or to turn it in to help with their research or so-called research.

It is clear that this group is not created to help others. Many of the members I am sure do their best to help many people in this group to share information to ask questions and I do not blame or think any of the members are involved except for the ones that are listed as admins.

If you are in this group you are advised to check it out for yourself and if you feel the same way to delete the posts that you have in that page as well as get out of it. Also I would advise all of us to take a better look at who the admins are in many of our groups if we do not know or have never checked it out. We need to do all we can to look out for ourselves and our fellow CRPS Warriors and if there is any chance that this group is not on the up-and-up or could be using our information for any purpose other than to help each other live a life with this horrendous evil monster of a disease, I want no part of it and I do not want any of you to as well.

I was originally going to tag everybody in the post within the group that I’m friends with but there are so many of you I ran out of room on a piece of paper writing your names. I’ll be tagging as many as it will allow. Please if you are a CRPS Warrior check out this group check out the information for yourself and be careful out there.

I urge you all to please report all the fake profiles & all the groups that the fake profiles created & are Admins of, it’s the only way we can get them shut down. This post is now public, please feel free to share. Marisa Gravett has additional information on this as well.

Look up Jerrod Rand on YouTube if you want to see for yourself. Be careful out their Warriors. We are finding way too many wolves in sheeps clothing within our community.

** BELOW ARE SCREENSHOTS OF THE ADMINS & A FEW OF THE GROUPS & PAGES THAT ARE LINKED TO THEM **

**BEFORE I REPORTED & BLOCKED THIS “JERROLD RAND” facebook account (whether someone is using his name, or it is truly this person; we don’t know yet?)- I FOUND THIS POST VERY INTERESTING & TELLING OF PROBLEMS ON/WITH THAT PAGE:

I wanted to add that we all need to be vigilant, but we cannot allow ourselves to overreact or get too upset over this. Though it is very upsetting, our main goal is to stay calm and get the “word out” to the RSD/CRPS & Pain Communities. If everyone who reads this can go and report each of these groups and the 5 accounts that appear to be for the sole purpose of “pushing” these 30 or so “support groups” on unknowing people in pain! If we all can do that, Facebook will be able to shut them down!

Please understand that I’m in no way condemning those who have joined these groups. It’s not their fault. It’s the admins (whoever they truly are??) of those groups who are to blame. They are violating our community and others. Once again, people had recently been asked to send in photos of their Rsd/CRPS affected limbs. People, please don’t send your photos to anyone who asks. If you’re friends with someone who you know & feel comfortable with; and you want to share a photo; go for it! But please, just a bit of advice from my heart: “please don’t send your personal medical photos to anyone who requests them from you”. Also, PLEASE don’t take any medical advice from anyone online. They could be impersonating anyone! Only take therapeutic, medical advice from your own personal medical professionals. The ones who know you and your personal mecical history.

Any questions, please don’t hesitate to ask: Sarah Lesley, Mary Mattio, Marisa Gravett, Tracey Tipton-Morales or you can ask me & I’ll do my best to get the right answers for you.

Please share this public blog post everywhere that you can. We need to look out form& take care of each other! Thank you for your time!

Lastly, here’s a link to a video by Jerrold Rand who seems to be the ringleader:

1: “Dr” J. Rand on Opiate use” at his Youtube channel called “Bay Recovery”

2: “Dr” J. Rand talks about Methadone on his Youtube channel

3: THIS ONE MAY UPSET YOU- if you’re fighting for your life-saving pain medication right now (just forewarning you): “Dr.” J. Rand’s patient talking about chronic pain etc. (On Youtube)

I hope that you will all just take this information and do what’s in your heart. I cannot honestly write here, that I know anything “for sure” about this quack! I’m writing an opinion piece (because we are all allowed to have our own personal feelings and opinions). But my opinion is that this guy and his 30+ Facebook groups, fake admins (possibly?) and several fake accounts, are frauds! I’m just sayin’—–check the one photo screenshot above especially!! The one that shows that his license was revoked in 2012!! Then look at the News story underneath that one! About him self-prescribing sleeping pills etc! Also, it appears from that News piece, that he somehow may have been responsible for a women’s death??

Sorry for the bad news! But I love you all with my whole heart & soul. I feel an inner tug at my heart to protect you in any way possible.