It’s Ok not to be ok


Hello Luvs,

I found this very awesome post on Facebook and it’s from a page called “It’s Okay Not To Be Okay.”

I have given them the credit for this beautiful piece. The credit for this beautiful woman’s *picture below, goes to the person who took it; and she is also named below.

This woman’s outlook on life, took my breath away! It made me cry! We all need to think more like she does!! When I become sad bcz of chronic illnesses and pain, I’m going to think of this amazing woman! I’m posting her story here, in hopes that it will also help you to be more positive. Especially during rough times such as political unrest and a pandemic! Let’s keep in mind what truly matters.

This 92-year-old, petite, well-poised and proud lady, who is fully dressed each morning by eight o’clock, with her hair fashionably coiffed and makeup perfectly applied, even though she is legally blind, moved to a nursing home yesterday. Her husband of 70 years recently passed away, making the move necessary.

After many hours of waiting patiently in the lobby of the nursing home, she smiled sweetly when told her room was ready. As she maneuvered her walker to the elevator, I provided a visual description of her tiny room, including the eyelet sheets that had been hung on her window. “I love it,” she stated with the enthusiasm of an eight-year-old having just been presented with a new puppy.

“Mrs. Jones, you haven’t seen the room …. just wait.”

“That doesn’t have anything to do with it,” she replied. “Happiness is something you decide on ahead of time. Whether I like my room or not doesn’t depend on how the furniture is arranged, it’s how I arrange my mind. I already decided to love it. It’s a decision I make every morning when I wake up. I have a choice;

I can spend the day in bed recounting the difficulty I have with the parts of my body that no longer work, or get out of bed and be thankful for the ones that do. Each day is a gift, and as long as my eyes open I’ll focus on the new day and all the happy memories I’ve stored away, just for this time in my life.”

She went on to explain, “Old age is like a bank account, you withdraw from what you’ve put in. So, my advice to you would be to deposit a lot of happiness in the bank account of memories Thank you for your part in filling my Memory bank. I am still depositing.”

And with a smile, she said: “Remember the five simple rules to be happy:

1. Free your heart from hatred.

2. Free your mind from worries.

3. Live simply.

4. Give more.

5. Expect less, & enjoy every moment.

*Photograph by Karsten Thormaehlen

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

Stop The Insanity: The Case Regarding Dr. Kline, M.D.


A woman on Twitter, made a formal complaint against Dr Thomas Kline, MD. He’s a licensed medical physician who treats many chronic pain patients. He has been a courageous & outspoken advocate for the pain community. His Tweets are based on facts & backed up with research. He voluntarily gave up his DEA license because he’s suddenly being investigated for Tweeting that 99.5% of people who are prescribed opioids , do not become addicted! How does a Dr. become under investigation for stating a fact? One that has proof from research??!!

This is insane! How can a random person on Twitter go and make a formal complaint against a Dr . they’ve never known? A physician whose services they’ve never sought out or ever used? ? No one she knows has gone to him & no one has ever been hurt by him!!
His information is NOT emotional, but based on facts and professional research! Her complaint is an EMOTIONAL one!! Yes, with all due respect, it’s sad that she lost her son to HEROIN overdose! But what in the world does a Heroin addiction & his death, got to do with easing the suffering for millions of high impact chronic pain patients?
She’s looking for someone to blame! Her son had a Heroin addiction (an illness of its own) we know that for sure. Maybe he had a genetic predisposition to addiction? But just maybe she’s wants to blame someone else for her sons actions or someone’s inactions? Our Dr Kline is a pillar of ethics and knowledge in the pain community).
Can everyone please get it straight?? Opioids that are prescribed for legitimate high amounts of daily chronic pain, have only about 1-3% to do with addiction!
Someone respectfully tell Ms. Joy, that hurting and “killing” innocent people (who live with horrible A.S., Cancer, RSD/CRPS, Pancreatitis & so many other horribly painful illnesses) will not bring back her son!

The facts are these:

1: Suboxone has horrible side effects (Opioids have very little)! You can’t have an emergency surgery while taking Suboxone because it blocks the anesthetic! It takes about 2 weeks to get out of your system! Maybe this woman wants a traumatic surgery without anesthesia? But most sane people do not want that! You cannot stop taking Suboxone by weaning off slowly (as you can with opioids)! It fights against you with horrific pain and worse effects! I have interviewed people who were given Suboxone inpatient and on it only 6 weeks! It took them more than 6 months to get off if it, and they had horrible & painful side effects from trying to get off of it! Suboxone is a money making scheme! The people involved with the creation, production & distribution of Bupenorphrine/Suboxone, want to rid the world of the “evil” opioids and make Suboxone the only drug for pain! ITS NOT EVEN FOR PAIN!! It’s supposed to be a slightly helpful but weak analgesic for helping those who ARE ADDICTED…& WHO HAVE SOME PAIN!

2) How can a person just make an outrageous claim and the USA government take it seriously & without any proof at all!!??? HOW did this happen?? How did we get here? (I’ll give you 2 reasons starting with “A” & ending with “K”…& also PROPaganda! How does a Dr who is good, kind and cares about the suffering of his patients, get to a point where he surrenders his DEA license that enables him to prescribe some medications treat his patients?? What if “they” decided insulin was addictive to 3% of population? Are they then going to let all Diabetics suffer?

3) Dr Kline uses facts and research and this accuser is someone who I feel is looking to blame someone else! Let’s see what role the others who lived with and around her son had in his life, his addiction & his death, instead of blaming an innocent Dr who is brave and still cares about humanity!

3) most importantly: If someone is taking a pain medication for high amounts of daily high impact & never ending pain, and this medicine (an opioid) helps to enhance this persons life, without any harm to anyone or anything-THAT IS NOT ADDICTION! If a CPP is getting some relief, getting meds on time, taking them as prescribed & they’re given a chance at some semblance of a life (& they are living it), then that medicine should be not only allowed but prescribed absolutely, without any thought of this craziness!

***Go Ahead & Google “FDA-2012-P-0818: It states this:


Some other Articles in this Blog @tearsoftruth.com
A few more Articles within this Blog @tearsoftruth.com
A few more Articles within this Blog @tearsoftruth.com
And lastly, just a few more interesting articles regarding the subject of Opioids, within this Blog

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 )

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:

Regarding Buprenorphrine-Suboxone


Hello my friends! For this blog post you should probably grab yourself a cup of coffee and sit down to read this short story! I’m sorry that this article is more like a “short story” than a blog post! It’s twice as long as any of my normal posts would be. But this just meshed and I wanted this information available to you.

In my opinion, I would prefer no treatment than be forced to take some of these harmful/ horrific medications. By the way, I researched them and they are still not FDA approved for chronic pain patients.  In September 2018, a form of Bupenorphrine, a sublingual film, was FDA approved “for opioid use disorder. ” It was also approved for the maintenance of “opioid dependence”. But if your physician prescribes it for your chronic pain, “off label”; and you are not a patient with “Opioid use disorder” or an “Opioid abuser” then  you may possibly get a very low analgesic effect. Might as well take that Tylenol they’ve been pushing at us? It will help just about as much.  Well, you all know what I mean, right?

Here’s another thought:  Opioids, (*which are being demonized by our government now) can have a few side effects but normally they go away within a week or so after taking them. The side effects can be:

  1. Constipation
  2. Shallow breathing (but that is only if you take more than what is needed for your height/weight and medical conditions)
  3. Once in awhile you can get nausea and/or vomiting (but the nausea lasts a couple of days at the most.  I’ve not experienced vomiting from Opioids.

Here are the list of side effects for the FDA approved Bupenorphrine and Naloxone sublingual film (called Cassipa): Proof of these Side effects of this medication online

  1. oral hypoeshesia (numbness),
  2. glossodynia (burning mouth)
  3. oral mucosal erythema (inflammation of the oral mucous membrane *sores in your mouth*
  4. headache,
  5. nausea
  6. vomiting,
  7. hyperhidrosis (excessisve sweating)
  8. constipation,
  9. **SIGNS AND SYMPTOMS OF WITHDRAWAL**
  10. Insomnia
  11. **PAIN**
  12. Peripheral edema (accumualtion of fluid causing swelling in the lower limbs

**THESE PRODUCTS MAY ONLY BE PRESCRIBED BY DRUG ADDICION TREATMENT ACT (DATA)-CERTIFIED PRESCRIBERS. With this list of side effects and all of the warnings, how or why is is supposed to be OK to use, but other

***BELBUCA:  is another type of “opioid”, similar to the above, but without the Naloxone. It is also a partial antagonist. (**It is very different from the kind Opioids that most pain patients are familiar with. The opioids that we know are able to help alleviate high amounts of daily, round the clock, high impact chronic pain).

I visited the Belbuca online and their website has a bunch of videos showing people with chronic pain and how this medcation has supposedly helped them (they are paid actors most likely).  The list of effects appear to be much longer and worse, in my opinion. The list of bad effects on the majority of opioids that many chronic pain patients have safely taken for years; or even decades, appears to be much less toxic and life altering or even, threatening.  On that same page, they say that “Methadone maintenance is  helpful for people who don’t do well with buprenorphrine. But people (mainly addicts) have to visit a clinic daily to recive that treatment.”  Our favorite guy (*cough cough), Kolodny, says now that “Suboxone is a viable treatment akin to buprenorphrine.” *Also, did you know that once you take Bupenorphrine or Suboxone, you will be labeled an “addict” & no longer a chronic pain patient/warrior! See: Opioid Addiction Treatments). Kolodny ‘s trying to not only rid the USA, but the world possibly, of opioids and replace them with much more harsh opioids! Suboxone which he calls “akin to buprenophrine” has been proven to have none or a very low analgesic effect. If taken, this so called medicine, LABELS you for life as an “ADDICT”. Yes, you are labeled for life as an addict if you accept Kolodny’s “get rich scheme” & take these harsh addiction medications! They are very different from normal pain medications that most people with long term chronic pain illnesses have been doing well on, for decades! Suboxone & Bupenorphrine also have a long list of worse than horrible side effects. Why & how are these OK to give to sick people living with horrific amounts of daily pain? People who are seeking any kind of reprieve, relief from their painful existence in hell.

Please be aware of this crooked switch to these harsh addiction medications. Please understand that the cowardly physicians, who prescribe these meds, do not have the patients best interest at heart. Instead they’re lining Kolodny’s and others wallets and bank accounts.

All the while we are suffering and being lumped together with addicts (yes, they need help too. But that is their story to tell). I have testimonials a mile long from several persons who had been prescribed these harsh addiction medications & who’ve taken one form or another of Bupenorphrine or Suboxone. They said “it was the worst medication they’d ever taken and it has horrific side effects that are unrelenting & never ending. IF you dare try to go off of it, or taper down (*as you can do with the regular kinds of opioids that most patients are familiar with), those medications tend to pull you in even deeper. They’re designed to keep you addicted . They work against your body and majorly increases your pain so that you won’t stop taking it. You cannot ever go off of it “cold turkey”. If you try, then you may experience withdrawals that I’ve been told are hellish. Worse than anything I’ve ever heard about regarding opioid withdrawals.

In a future blog post, I will try to add more & organize them. I’ll let you read what others have sent to me. I have permission from several persons because they want you to know what they have had to endure; in order to save you from going through the same hellish experiences.

DISCLAIMER: *I AM STATING THAT THIS MEDICATION IS NOT GOOD FOR HELPING THE CHRONIC PAIN PATIENTS! BUT IT MAY BE A “WEAK ANALGESIC” THAT COULD HELP AN ADDICT, A DRUG ADDICT, WHO LIVES ALSO WITH CHRONIC PAIN! That’s what it’s good for!!

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

Trauma Resurfaces The Pain of Yesterday!


Many people go through life and are never held up at gunpoint, robbed or in situations of extreme fear with shooters on a rampage.

I’ve now gone through this twice in my lifetime, thus far. We recently visited Waco, Texas to see our daughter, son in law and two youngest grandchildren (ages 10 months and 3 years). My daughter works at Baylor University and had decided to take us all to the dining commons for dinner on our 2nd night in Texas, (10-2019). We arrived, when suddenly, an alert was texted to her husband’s and her phones. The alert told us to “take shelter immediately & await further instructions”. My daughter started to panic as any mother of two babies would! I was frightened but tried to stay calm for her and the babies. We had to be separated from our husbands. They were sent to the men’s restroom & my daughter, the 2 babies & I were sent to the women’s restroom.

We awaited instructions but we were huddled into the corner of a handicapped stall. Finally, an employee came & told us we were on “lockdown” and we were all moved into the basement of the dining commons. There was stagnant air & it was difficult to breathe. I was very frightened but just continued to keep my daughter & grand babies calm. An employee, the cashier who I’d met as I entered the building; came around looking for me! She said that she was “drawn to me” & felt the need to come and check on me. She was so kind & she brought water downstairs for everyone. The water helped a lot and my granddaughter calmed down. Once we were all together as a family; in the basement, my husband was so good with the kids. We all tried to help them to be unafraid as we waited for the “all clear” alert. After about 55 minutes, we were given that alert and we were free to eat our dinner and go back to their home. We found out that about a half block away from campus, someone was shot. There were 3 people with automatic rifles on the run. The University took great care to see that we were kept safe during this ordeal. The staff was outstanding and very courageous.

It all brought me back to the time when I was 11 years old, in 1973, February. My parents, older brother & I went out after dinner to get my brother some Confirmation shoes. I was over looking at girls shoes, when suddenly I heard my father’s voice. He told me to come over to him. But a man had a gun pointed at my dads head! I didn’t know if I should try to run out of the store to get help? Or if it was not real? I remember saying aloud,”his “Candid Camera”? If I don’t cry, I get a prize?” My dad told me “Suzanne if you ever listen to me, do as I say right this moment! Come here right now!”

So I meandered back to the store room of the shoe store; where my family was held captive; along with another family of 4, a sales clerk and a manager. I saw my mother crying as one of the two men had their guns pointed at her face. The other man had his gun pointed at my dads head. I started to cry when they told my dad to empty his pockets and they proceeded to take my mothers wedding rings.(she’d gotten that engagement ring at age 14).

My dad grabbed the mans arm & said “Don’t you take those rings”! My mom yelled at him to get down and just do whatever he was told. I was crying so hard because the man said to my dad ,”shut up or I’ll put a bullet through your head”! I was really scared and my 13 year old brother stared emotionless as he was gathering every detail.

My mom passed out and the men grabbed my arm as if to take me with them. My mother laid on top of me as I was vomiting by this time! They kept telling my parents to “shut her up – or they would!” Finally, they ripped the phones off of the wall and made us lay down face to the ground. They said that we should wait 20 minutes before getting up. The manager somehow called the police. After they arrived, we told them as many details as we could remember. My brother stayed calm and gave them lots of Information.

After that, my mother was so scared & she didn’t want to go home right away. My Uncle, her brother, lived nearby. We went to his families home so my mom could calm down and feel better. Finally, we went home but I’ve never forgotten that day in my life. I had nightmares for a very long time and never was given a chance to discuss my feelings or fears. Lastly, I was blamed for the robbers taking my mothers wedding rings. My mother told everyone that as she was covering my mouth (because I was afraid, crying & even vomited as they robbers were saying “shut her up, or we will!!”), the robbers saw her rings sparkling and so they stole her precious wedding rings. Even though the robbers took all of the people’s wallets & jewelry etc., somehow it was my fault that those rings were taken off of her finger.

I guess I just wanted to share this with you all because the ordeal in Texas brought back some of those memories. After the robbery when I was only 11 years old, there were many more traumatic events that I experienced. If you know me or if you’ve had the chance to read the early posts &/or password protected posts in this blog; you’d realize how true this is. I was later diagnosed with PTSD, in or around my late 30’s. I finally received the help that was much needed. The Domestic Violence shelter and therapy has helped me over the years, to get past some of my fears. I still suffer today, but not nearly as much as I had in the past. Thank you for letting me share my experiences here with you today.

Suzanne, age 11 years