Let Freedom Ring


As I sit here tonight, I am afraid.  I don’t often say that,  due to my history (*living with a lifetime of abuse, pain, chronic illness, loss, multiple surgeries and more).  I have been  through so much during my 58 years on this earth. I may be a bit anxious and have physical disabilities, but inside, I am a very tenacious and strong woman.  I am a fighter.  I can plainly say that it is not the Coronavirus or COVID-19, that I’m afraid of today. (**even if I were to get this nasty novel Coronavirus, I still would prefer to live free until I am unable to live any longer. I hope and pray that this does not happen, but I know that there is always a chance. I’m willing to take that chance to live a free life outside of my home).  It is those  people who have made “being safe at all costs” more important than living life at all.  I fear those for whom this virus has yeilded power; they are our biggest threat. If you think about living in pre-COVID-19 times, you will remember that waking up every day and going out into the world is not and has never been “SAFE”.  But still we went out every day and lived our lives in “unsafe mode” constantly and consistantly.  Just think about it for a moment.  Getting into the car and driving, is not safe. Getting into an airplane and flying, is not safe.  Going to the mall, where there are a multitude of germs, is not safe. There are people who have gone sky diving, parasailing, skiing, race car driving and even gone to concerts and full football, Baseball or Hockey stadiums in the past.  Yet today, those same people are now still hiding inside of their homes, terrified of something that has a fatality rate lower than expected and close to the Flu’s 0.1%. Study” Coronavirus Fatality Rate Lower than Expected, Close to Flu’s 0.1%

The threat seems to be coming straight from those elected officials who are supposed to be governing at the pleasure of the people! They were not elected into the office of Governor, to become dictators and tyrants.  One of those dictator tyrants, for example, is our Michigan Governor Gretchan Whitmer. At the first sign of trouble; they order us cower in place and then dictate from their basements (or their second or third homes, after ordering the rest of us not to travel to any second vacation homes).  They are fear mongering instead of uniting. They are telling us to stop thinking for ourselves and listen to & follow their outrageous orders. We, the people,  are shrinking instead of standing tall. But standing tall and fighting for freedom is what Americans have done best for hundreds of years. Please let it be known that I do not condone violence.  But peaceful resistance, writing, calling, getting petitions and recalls out there; are proactive steps, made by “Free People”, and I definitely do believe in and support these peaceful actions, especially now.

Our Governor and several other Democratic Governors have made hundreds of executive orders.  They have claimed that they are being driven to these Executve orders by Science and data.  But all of the Science and data that I have read, has been incorrect time and time again. The data has been incorrect, misrepresented, and downright skewed to make things appear much worse than the situation truly is.  The CDC’s own Dr. Fauci has admitted that he has been wrong! He also told us in March 2020, that masks were “not necessary” and that they “won’t protect us” from COVID-19.  But then a few months later, informs us that we ” MUST wear masks” to keep us “Safe”. He also is the same person who told us that these lockdowns were necessary to “flatten the curve”.  Well we did that and flattened the curve on or about mid April 2020. It is now almost June and we are still quarantined and under “orders to stay at home” (except for essential travel for food or necessary items to sustain life etc.).  Now Dr Fauci, our expert Immunologist who has been advising our President and the COVID-19 taskforce, says that a second wave is “NOT INEVITABLE”–and he is “feeling better about” preventing it. 

Many of the same ideas that have been going on inside of my head, were said aloud in a courtroom in Illinois this past week. Judge McHaney, who presided over a case against Governor Pritzker, verbalized and put in court transcripts, many of the things that have been eating away at my inner self.  Here are some of the things that he said:   Mainerv. Pritzker Transcript – Let Liberty Ring :

Since the inception of this insanity, the following regulations, rules or consequences have occurred:”

  • I won’t get COVID if I get an abortion but I will get COVID if I get a colonoscopy
  • Selling pot is essential but selling goods and services at a family-owned business is not.
  • Pot wasn’t even legal and pot dispensaries didn’t even exist in this state until five months ago and, in that five months, they have become essential but a family – owned business in existence for five generations is not.
  • A family of six can pile in their car and drive to Carlyle Lake without contracting COVID but, if they all get in the same boat, they will.
  • We are told that kids rarely contract the virus and sunlight kills it, but summer youth programs, sports programs are cancelled.
  • Four people can drive to the golf course and not get COVID but, if they play in a foursome, they will.
  • If I go to Walmart, I won’t get COVID but, if I go to church, I will.
  • Murderers are released from custody while small business owners are threatened with arrest if they have the audacity to attempt to feed their families.

These are just a few of the examples of rules, regulations, and consequences that are arbitrary, capricious, and completely devoid of anything even remotely approaching common sense.  State’s attorneys in this state, county sheriffs, mayors, city councils and county boards have openly and publicly defied these orders followed by threats to withold funding and revocation of necessary licenses and certifications unless you obey.

Our economy is shut down because of a flu virus with a 98% -plus survival rate.  Doctors and experts say different things weekly.  The defendant cites models in his opposition.  The only thing experts will agree on is that all models are wrong and some are useful.  The Centers for Disease Control now says the virus is not easily spread on surfaces.”

“The defendant in this case orders you to stay home and pronounces that, if you leave the state, you are putting people in danger, but his family members traveled to Florida and Wisconsin because he deems such travel essential.  One initial rationale why the rules don’t apply to him is that his family farm had animals that needed fed.  Try selling that argument to farmers who have had to slaughter their herds because of disruption in the supply chain.”

“When laws do not apply to those who make them, people are not being governed, they are being ruled.  Make no mistake, these executive orders are not laws.  They are royal decrees.  Illinois citizens are not being governed, they are being ruled.  The last time I checked Illinois citizens are also Americans and Americans don’t get ruled!  The last time a monarch tried to rule Americans, a shot was fired that was heard around the world.  That day led to the birth of a nation consensually governed based upon a document which ensures that on this day in this, an American courtroom tyrannical despotism will always lose and liberty, freedom and the constitution will always win”

As I sit here contemplating a smooth ending to this post/article, I realize that #1: our Governor in Michigan, Gretchen Whitmer, has been one of the top tyrannical dictators. She has done and said similar scenarios as the Governor of Illinois. Yet, our Michigan court somehow sided with her? Her family went up North last weekend to her 2nd home. I saw photos of her in a restaurant without a mask and with several other people. Her husband was exposed as trying to get a favor, because he is “the Governor’s husband “. He asked a boat dock company to let him “jump the line” because of who his wife is. She first said it never happened. But later went on Television & explained that “it was his failed attempt at humor”. Which one is it? The same rules have been applied to Michigan, but even more arbitrary and nonsensical. How can Lottery tickets be essential, but a knee replacement which would alleviate great pain, is not? I cannot top those words just above. I would like to reiterate the judges words and say to you….”Liberty, freedom and the constitution should always win”…..thank you for being here.

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

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

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!

The Story of My Experiences With USPF


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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Reckett Benkaiser being Sued by 35 states

Who Makes Bupenorphrine?

u

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

A YouTube Video with my Credentials

Tides Turning For Opioid Patients?


Hello Luvs,

This PDF was sent to me by my friend & fellow advocate, David Cole. I wanted to find a good way to share it with everyone. Please let me know if you have any problems at all with sharing it.

Thank you and I wish each of you peace, Hope, love & Light. Let’s hope that the people in Washington state will help to share their awareness with the other 49 states. I truly pray that someone who is capable and willing to help the chronic intractable & high impact pain community reads this File. I hope that someone will help us. Please start to once again take care of the sick, disabled and those living with horrible daily pain.

Please read this file about the tide starting to turn in the state of Washington for the pain community. Our voices are finally being heard. Share this everywhere far and wide with News Media & On Social Media! We deserve to live some semblance of a life; same as everyone else. We are not “less than” other people who haven’t gone through tragedy or illness. We are worth it!

https://www.dropbox.com/s/tibqrx8clichs39/Opioid-PatientsINS2019-02.pdf?dl=0

Update On Upcoming Skull-Neuro-Ear Surgery


Hello Everyone !

Above is a 37 second update from my appointment today 6-10-19. Thank you for the outpouring of love ❤️ and support! You’re the Best followers/fans/friends ever!!

**ADDENDUM: SURGERY WILL BE JULY 26, 2019** they scheduled it today…. JUST WANTED TO UPDATE YOU ALL… sending peace, hope, love & Light…

Feel free to email me: tearsoftruth@yahoo.com

Love ❤️

Suzy

Heres my Instagram post today too:
So I saw the Skull base/neuro/Ear surgeon today. I will be having the tumor removed soon. I will have a Tympanoplasty(they’ll reconstruct my eardrum using a “disc” made from cartledge & Skull fascia. This is to prevent this from returning. The 3 little bones needed for hearing are diseased. I’ll be getting possibly prosthetic bones? Also I’ll be having a “Mastoidectomy”! Removal of the diseased part of the mastoid bone. It may make my HOH/ “hearing”worse or same but must do this because if it gets into the brain it can kill me! It’s really scary! Many times people hear nothing afterwards, many times people get extreme dry mouth from damage to salivary glands during surgery. Many people get worse “white noise” or pulsating in ear after surgery. Many people get a strange taste for months or forever. They try to not injure the facial nerves by doing EMG during entire surgery, but it can happen… I’m honestly not scared of the white noise or pulsating or worse/same HoH —but I’m frightened of the brain surgery part. They say they’ll be conservative with my hair being cut but still a 2 finger radius around my ear will be cut… just wanted to update everyone. It will be in 2 months because it’s very slow growing tumor and may have been there my whole life?? But it takes time to get the 4 Drs clearances that I need and also his schedule is booked until then. Now I’m happy to have my Summer but still scared because I now have too much time to be thinking about it all!

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!

Frontal lobotomy for the relief of intractable pain • CERGM


Hello Luvs,

Ohh My Goodness!!! Has our society gone completely mad now? These “sickos” may be taking us back in time to a period when people were given a Frontal lobotomy for the relief of intractable pain!! This is absolutely crazy, when a safe pill, called an “opioid” can help our chronic intractable pain patients. Who in their right mind would choose a frontal lobotomy over a safe an effective pill? The opioids that are getting a bad rap from anti-opioid zealots (read more about them, here: Anti-Opioid Zealots ), are not hurting the legitimate chronic pain patients. People who’ve been prescribed opioids for years, (a decade or even more) & have done well; are NOT addicted! Only about 1% of true chronic pain patients actually ever become “addicted” (Writer Josh Bloom, gives you statistics here: The Opioid Epidemic in 6 Charts, Designed to Deceive You ). It’s not prescription opioids that are the problem! It’s the illegal fentanyl from China & Mexico that are hurting, addicting & killing people! Addiction and dependence are two very different situations. You can find out more information about that here: Addiction & Dependence Are Not The Same

Who are the bad actors? Government, Healthcare or Patients? • CERGM
— Read on cergm.carter-brothers.com/2019/03/28/frontal-lobotomy-for-the-relief-of-intractable-pain/

Anti-Opioid Zealots


I opened up facebook to see that a person who calls herself an “investigative reporter”; doesn’t actually have a clue about the subject for which she stands upon her soapbox and spews hate and prejudice! Her hate speeches, disdain, lack of knowledge & empathy for the chronic pain community are outrageous. She also states that she’s a pastors wife! Which in a stereotypical sense, should make her more kind, loving & empathetic (on the contrary). I’m definitely not a cold or callous person. I deeply care about others & especially my fellow chronic pain patients. But I pity her in her for the way she’s unable to get help for her grief. I’m terribly and deeply sorry for anyone who’s lost someone that they love to any kind of addiction. She lost an adult child to overdose of prescription opioids. She’s made it her fight in life now, to rid the world of the “evil narcotics”. Do you think she knows that the statistics prove that only 1-3% of prescription opioids ever result in overdose?Check out this new report from the Cato Institute

It’s the illicit fentanyl and Cara-fentanyl from Mexico & China that are the problem! It’s not legitimate chronic pain patients with legitimate prescriptions from licensed pain management physicians that are to blame for this manufactured “opioid crisis”. The opioids are only a tool. Just as guns, kitchen knives and cars are all tools. These tools don’t kill people any more than opioids “kill people”! There’s a genetic link to addiction. There’s also a distinct difference between addiction and being dependent physiologically to a medication that one has taken for several years to decades. With addiction, the addict must make a conscious decision to get the meds, tell lies, keeps secrets and physically take the increasing amounts of drugs to give them a “high” or a euphoric feeling! They ruminate look at the clock, just waiting for their next fix! Chronic pain patients, for the most part; were never given the “luxury” of a choice! Most are people living the rest of their lives with high amounts of ongoing daily chronic pain; with no end in sight! The average chronic Pain patient, is living a life sentence in agony through no fault of their own! Usually an unsuccessful surgery, freak accident or a motor vehicle accident. Today we have an “under & untreated pain crisis”, with suicides from pain mounting in numbers weekly. A very knowledgeable and vocal physician and chronic pain patient advocate, Dr Thomas Kline, MD, has kept a record of these rising number of suicides.

Chronic pain is in fact a disease; as explained in this article in Health Magazine (February 2016) and in many other news articles. It’s Origin is Neurological. Scientists now believe that one cause of chronic pain is a dysfunction of the nervous system & includes the misfiring of nerve signals long after an accident or injury. According to this article: http://amp.timeinc.net/health/health/condition-article/0,,20187942,00.html, Neurons (cells in the nervous system that communicate with each other) become overexcited and keep firing, even after the original cause (injury or illness, in some cases) has long since passed. The person receives persistent pain signals.

If I may be so bold as to speak for the majority of the chronic pain community, we are not insensitive or calloused persons. In fact, I’ve never met a more caring, empathetic group of citizens. We care very much that people have lost their family members to the disease of addiction. We grieve for their loss of lives and love.

But we are grieving too! We have had so many deaths due to either suicide, untreated or under treated chronic pain since the CDC Guidelines appeared in 2016. Read this: Article by Dr Jeffrey Singer MD, Cato Institute. Dr Singer states that, “patients have become the civilian casualties of the misguided policies addressing the opioid crisis.” These “guidelines”have somehow become “law” to the majority of anti-opioid zealots; along with many physicians and pharmacists!

I wrote to the CDC and if you look at their response to my letter here(*& in photo below) A Response letter sent to me, from Exec Secretary of CDC, they state that “the CDC Guidelines are not meant to be rule, regulation or law. It’s not intended to deny access to opioid pain medications as an option for pain management”. I also agree that nobody should be denied pain care. That these are just supposed to be nothing more than guidelines. They weren’t meant to become the Law!!

Now there are admissions of the over fabrication of statistics by the CDC. Also, the AMA has come out with their own resolutions to these Draconian CDC Guidelines. You can find what they’ve written in this article by The Pain News Network https://www.painnewsnetwork.org/stories/2018/11/14/ama-calls-for-misapplication-of-cdc-opioid-guideline-to-end

This person calls herself an investigative reporter. People like her feel that because they have an audience & a platform; that they can stand on their soapbox and spew misinformation and hatred due to unresolved feelings of loss and grief! But they are just plain wrong!

When I opened up Facebook to try and reason with her. To attempt to discuss and/or debate like adults; I found that her page was blocked from any comments or discussions. That’s when you know you’re on the side of light and good. When you’re willing to discuss hard subjects in a civilized manner. But when discussions are cut out and blocked; that’s when we know that a person just wants to pontificate and spew hate!

Lastly, I wanted to add that this person should be in violation of the ADA, for her written comments regarding Cindy Steinberg. She made derogatory remarks about Cindy, a very well known pain patient advocate and friend of mine! I don’t think she is allowed to say the things that she said about Cindy supposedly being “theatrical” because she used a cot in between her statements regarding the opioid hysteria. This reporter even went so far as to say that Cindy was “laying in her her cot while testifying to Congress.”! Gee, I saw the video and it sure appears that she’s sitting in a seat discussing the situation in an intelligent manner. Here is part of Cindy Steinberg’s message:

“In the near term, we can and must restore balance to opioid prescribing with depoliticized, rational and cleareyed recognition of the risks and benefits of these medications,” she said, according to her prepared remarks. “In the long term, we must invest in the discovery of new, effective, and safer options for people living with pain.”

What’s wrong with that message? How could any sane person find something incorrect or one-sided, with that direct quote”. On the contrary, Cindy spoke intelligently! She discussed ways to help end opioid hysteria and the under-treated/untreated pain crisis today!

Lastly, if this one-sided, so called “investigative reporter”, would share an ounce of the truth with her readers; she’d have not lied about Cindy “laying in a cot while testifying to Congress”. Cindy, as you can see from the video of her testimony, is sitting upright in a chair as she speaks to Congress. But would there have been a problem if she had been in a cot while testifying? NBC & this reporter could very well be violating the Americans with Disabilities Act? In what world is mocking a disabled person OK? Isn’t there an ADA law that calls for accommodating persons with a disability?

Below is a photo from a portion of the return response letter that I received from the Executive Secretary of the CDC:

Here are some great resources for those who are skeptical of my words here today:

  • ALSO: Here are a couple of articles written by the person being referred to in my article today:
  • Lastly, I just want to add (so that I an not accused of being a “mouthpiece” for the USPF) that I resigned from the US Pain Foundation in September 2018; after only 8 months as a Board Member & 3 1/2 years as a volunteer Ambassador. I was planning on staying to try and help them rebuild. But the moment that I felt my integrity was challenged, I resigned.