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. Lifeprint.com is just one example, Handspeak.com is another, but first I wanted to let you know that I do have some “ASL Basics- Vocabulary” lessons at my YouTube channel :

My YouTube Channel @ASLSuzyQ

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

My new Hearing aids:

Pondering Pain Awareness Month 2019


Hello All,

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The Story of My Experiences With USPF


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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Reckett Benkaiser being Sued by 35 states

Who Makes Bupenorphrine?

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

A YouTube Video with my Credentials

All For One, None For All


Gosh, to think of all the positive blog stories that I’ve posted. That’s how I met most of you. Through my perseverance and positivity. But lately, I’ve had lots of “downers” & I apologize. I do apologize …but not before another “not so upbeat” post. So remember how I was trying to be there for my dad? He recently was inpatient at hospital & he had to have the “Rapid response” revive him twice at age 88. I went even though I was told by him & my brothers, not to come. Well then, I was given times that I was supposed to go because that would help everyone else. Because I’m a high impact pain patient, I’m up at night. That doesn’t mean I’m out at night doing stuff. That means, I’m at home in my PJ’s unable to sleep due to pain issues. But the entire 12 days before my major surgery, I spent with my dad and going when I was told to go and even when I wasn’t.

When he got put on dialysis, Craig & I showed up. I was told by my brother that it would be “all day or at minimum 4 hours so we couldn’t see him” (& supposedly they couldn’t see him either). So I called their bluff & said “well we will just wait. We can wait 4 hours here with you!” Ahhh but then he says 5 minutes later “we can go in after the dialysis nurse gets things started actually in about 1/2 hour”. Hmmmmmm??? A far cry from 4 hours or more. We stayed & said nothing. I even went to see my dad the night prior to the day before my surgery.

I was texted the day before my major surgery, by my brother who asked if I was coming up in the evening (to relieve him, I’m sure bcz he was leaving)… or “when was I coming?” That day I said I couldn’t come because I had to do some stuff for myself before the surgery. I’ve not heard from anyone since then.

I’ve texted my dad daily. But not once has it been about me. Never has been…never will be. But my brother called Craig once & said he was on his way to see my dad… told Craig about my dad & asked about my surgery for a moment in the end.

(Side story:**My dad told me that my middle brother (who I don’t see, for many good reasons & haven’t for almost 17 years)told him that he “doesn’t & hasn’t prayed for me for all of these years but he will pray for my surgery “for my dads sake”… WTH?? He pretends to be a priest! He buys all of the stuff online & even bought a certificate that says he’s a “bishop”… he has a fake chapel that when you go to Google Earth, it sends you to his house!! If you go to his website you see that people send him money as “donating to his church”! There aren’t even any real services held. One lady online wrote on his website, “me thinks he’s a fake”! Well me thinks so too! I stay far away from him and I have always and since I took several PPO’s out against him. (The Domestic Violence Shelter helped me!)

My dad is at cardiac rehab now & he’s actually getting better. But it really hurts that my family has not cared about me & they continue to say “we’re always here for you!” My dad continues this fairy tale “that if ever I needed any of them, they’d be there for me “even with our differences”!

Well, I’ll tell you…. they’ve not been there & haven’t been since I was a child. Once when I called my big brother, after I was in a catastrophic car accident. I suffered a TBI & his phone number was the only one in my head. I even hit myself in the face by accident with the telephone, in trying to call him because I felt in pain & afraid. He answered the phone with “Oh…you need someone ?…”. CLICK & the phone went dead! He hung up on me! I suffered 3 years of brain injury rehab. I’ve gone through 10 surgeries now! They tried to turn my daughters against me when they were teenagers also! They were not ever, nor have they been there for me at all! They’ve only tried to hurt me more & “kick me when I was down”. Luckily, the love, protection and bond that my daughters, my husband and I had/have, pulled us through! We are as close or closer than ever! They are older now, with families of their own. They look back & now understand & see what truly happened. Having children of their own, they can’t fathom what happened to me! They don’t really see or talk to any of my biological family. But when my dad was dying, I got them to come & to make a FaceTime call.

Now that my Dads in cardiac rehab, he /they are back to their same horrible treatment of me. They’d still throw me face down in a mud puddle, in the middle of a busy street during rush hour; if it would give them my daughters and grandchildren.

Another thing that I can’t fathom is the way my dad & brothers have treated my dads girlfriend/live in partner of 12 years. She treated me absolutely abhorrently when I introduced myself to her the first time, years ago. Again, another “victim” who only knew one side of their story.

But guess who was nice to her? Guess who was concerned about her feelings when my dad & brothers refused her entrance to see my dad while he was inpatient & dying. She texted me until the wee hours of the mornings. I was kind to her & told her she should go visit him anyways. She is my dads “creature” too, unfortunately. She stayed away & barely got any information from my brother. She asked me to help her to get a pill reminder because my dad did all of that for her. He infantilized her as he’s tried to do to me. I cared about her & promised her that no matter what happened; Craig & I would visit her & try to be there for her as much as possible. Guess who I never heard from before or after my recent major surgery?? I’ve not heard from any of them! I’ve sent texts for 3 days in a row & never have received a response from my dad. Yet my daughter texted him while she was visiting us with our granddaughters yesterday. He texted her back right away & asked if he could call her? She said she was at my house & he could call anytime.

I had to fight in order to be included as one of my fathers 3 adult children. They said I was “too frail & too weak to come visit because I might cry & hence, make my dad cry”! Oh My Gosh! I’m stronger than any of them put together! I’ve been through a hundred times more pain and abuse than any of them! I told them they were not going to shut me out again, like they did when my mom died. I am strong! I told my dad that he has 3 children, not 2! My oldest brother pretty much gave up a life of his own in order to be “the honored one”. He does everything for my dad and we’ve been shut out for years.

Only when my dad thought he was dying did he say nice things to me. He told me (after I put my foot down & insisted that I was visiting him in the hospital) that “it was a treasure to have me there every day”! He said I was a “dear, dear, sweet person & he loved me”! I cried & couldn’t believe those words were said to me.

I’m 10 days post-op and I’ve barely been out of our home. I cannot visit him right now. But as I’ve said, I texted 3 days in a row with zero response. The 1st day I did get a quick response when I tried to tell my dad (who was discharged & on his way to cardiac rehab) that my surgery was over & it hurts quite a lot. I sent a couple of pictures. But the response I got was unfathomable. He told me “it looked like a nice, neat job” (*pictures above & below)! Even though I actually looked like I’d gotten beat up or walked through a war zone! He then told me about his bathroom issue of the day.

None of them called or have cared about me at all! My older brother called Craig once after surgery & that was because my dad wanted to know if I made it or not, I guess? Then he told Craig about my dad (as I was being put into the recovery room).

I’ve had 2 pacemakers placed and 8 other surgeries in the past 17 years. I live with systemic RSD/CRPS. They don’t even know what that is & never have cared to ask or see any of my special needs. But my dad got a pacemaker 6-7 months ago at age 88. They made such a huge deal about it! I tried to explain that I’m on my 2nd one and got my 1st at age 40! I told them that “it’s not so bad”! They were indignant & furious that I didn’t see that him getting a pacemaker was the end of the world as we know it!! I never got one ounce of empathy, love or even a phone call after any of my surgeries nor either of my pacemaker surgery’s.

It’s a horrible rollercoaster. I stop seeing & talking to them for months at a time. Then I get phone calls asking me why I’m not calling my father? I’m so tired of being treated like the scum under the sink! My dads managed to turn all but 1 or 2 of my cousins against me & all of my aunts & Uncles. The one Aunt who never judged me and somehow saw through the charade, died a year or so ago. I have a couple of cousins who know, saw & understand the truth. One of the 3, passed away last week.

I had a favorite aunt once, she used to put food into my pockets when I’d leave after visiting her house as a kid. She has stuck by my dad & his stories. I asked my dad earlier this year if he’d told that particular Aunt, that we we’d been meeting for dinner the past few years and had been chatting etc? He told me “she doesn’t care about you she has no use for you!

I dared to speak the “family secrets”. I dared to get help and be a real & separate person. To make a healthier & better life for my husband, my daughters & myself. It’s been hell and I’ve tried to keep kindness, hope & empathy in my heart; & God in my soul.

So all in all, I almost lost my dad this month. Regardless of how I’ve been treated, he’s still my dad & we only have one dad. I also underwent a major & very painful surgery 10 days ago. A tumor was removed from my middle ear. The surgeon drilled into my skull and mastoid bone. Ten days later, I’m still suffering with a lot of pain & fatigue. Once again, I feel totally ostracized & uncared about by my biological family. There’s only one person whose been by my side for the past 23 years & that person is my husband & soul-mate, Craig. We’ve been by each other’s side through so much and I thank God for him every day.

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

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


Hello Luvs,

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

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

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

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.
  • Please send Your comments Re: HHS Draft for Pain Best Practices


    Hello Luvs,

    I just wanted give my readers a little “nudge” & remind you all to visit the The HHS Task Force online, which has provided a 90 day public comment period (ending April 1st,2019)

    Click here to post your comments re: the HHS Draft for Best Practices (90 day comment period)

    ****In the Search Box, put these words so you’ll get to the correct place for commenting: HHS Draft for Best Practices.

    I implore you to send in your comments. This is our chance to have our voices heard. Please go to the above link, in order to have your voice heard regarding the Draft Report to HHS. * my comments are copied & pasted for you below.

    There are three different ways that you can send in your comments regarding this Draft report:

    **When you write, email or post your messages regarding the Draft Report, please refer to this Docket Number:HHS-OS-2018-0027

    How to Submit Comments:

    1) Visit this Federal Portal at: http://www.regulations.gov

     2). Or you may Email topaintaskforce@hhs.gov

    3) or use USPS and you may Mail written comments to:

    U.S. Department of Health and Human ServicesOffice of the Assistant Secretary for Health200 Independence Avenue, S.W., Room 736E,Attn: Alicia Richmond Scott, Task Force Designated Federal OfficerWashington, DC 20201

    These are my thoughts. I will be condensing them into being my comments to the HHS Best Practices (again, comment period goes until April 1,2019:

    • I agree with the “individualized patient centered care”. But allow the Dr./Patient relationship to the determine treatments. But don’t allow the government, pharmacists/pharmacies, to override the treatment, including type, class & dosage of pain medications. Pain management Drs. went through, in many cases; 14-15 years of extra education. They know more about what’s best for the patients.
    • Opioids taken as prescribed, have less harsh & lasting side-effects than many other medications that are prescribed freely for patients today (such as Bupenorphrine, Suboxone)
    • 1) Many medications can cause death, if an overdose occurs.  2) Many medications can cause physical dependence, including heart, blood pressure and even insulin.
    • Pain Medications shouldn’t be decided on by what illness(es) a patient is living with. Pain is subjective and the CDC, in their 2012 response to Andrew Kolodny, stated that there was no research to prove that there’s any difference between cancer and non-cancer pain. Mr. Kolodny was trying to say that cancer pain was the only worst pain. There are a number of illnesses nicknamed “the suicide disease”,( including: RSD/CRPS, A.S., T.M. & others). People with comorbid highly painful conditions, should not be lumped & labeled as a sum of their illnesses. Everyone metabolizes differently. Some people may do well on a certain medication, while it makes others desperately more ill (due to the horrible side effects).
    • Nothing should ever be dictated “across the board” . Never should one rule be applied to 100 million chronic pain Patients. Some people living with illnesses such as Ehlers Danlos syndrome, for example; don’t metabolize medication like most other people do. They may need a much higher dosage than what the recommended ceiling of 90MME allows. By the way, when did recommended become law?
    • The CDC Guidelines were supposed to be just recommendations for General practitioners. But not even a year later, pain management Drs started being hassled by the DEA & other government & law enforcement officials. In 2018, they turned into “laws”. In many cases, good Drs. Have been losing their livelihood, their entire life’s work, because the DEA thinks that they had too many pain patients taking higher doses of opioids! It’s normal that Pain clinics would have a much higher number of people taking higher dosages of opioids.
    • Many persons who are living with several lifelong chronic painful illnesses, do not wish to have: massage, Reike, acupuncture or anything involving touching. People for example with CRPS, (systemic especially), cannot bear the pain of touching like this.
    • Many of those who live with horribly painful Rheumatoid disease, Neuropathies, Ehlers Danlos Syndrome & others, may get worse from doing things like Yoga, Tai Chi and even PT. (I had 9 years of PT & it made me worse & not better,many times)
    • Meditation most often doesn’t work well for the patients living with anxiety &/or PTSD, for example. *If it does help a little; it still does not lower high amounts of pain for the rest of someones life. Not enough to give someone their life back after a catasrophic painful event.
    • Why should anyone be forced to get an invasive surgery over taking a simple oral pill? Again, any medication is dangerous if taken incorrectly or by a person other than the intended patient. Therefore demonizing only opioids makes no sense.
    • Many persons aren’t candidates for the SCS and/or intra-thecal pain pumps. Many living with several painful illnesses have also compromised immune systems (CVID +others).
    • It appears that nobody on this HHS task force lives with chronic pain, in high amounts, due to lifelong, high pain chronic illnesses? Because they should know that no amount of meditation, injections or tai chi, would end ongoing continuous life long chronic pain!
    • *meditation, music therapy and aqua therapy may help to lessen pain for a short period of time (**if the patient doesn’t have an aversion to being in water or have open sores due to secondary illnesses)
    • As you can see, there’s no one fix for everyone. Mostly because we are individuals who must have individualized care. Nobody should be putting one group of persons with physical chronic pain or PTSD, ahead of another group of survivors. You don’t know what horrors anyone has been through. A soldiers PTSD may be horrific. Also horrific may a grown up’s PTSD. Someone who had lived a life of horrors in their own home (which should’ve been a safe place), at the hands of abusive family members.
    • Please don’t prescribe dosage limits “across the board” for everyone. That’s not keeping with the physicians code of ethics “to do no harm”!
    • Don’t pick & choose what medication or dosage by each illness or condition. Some medications work for one person and don’t help others
    • Give the physician back their right(after years and years of education & experiences) to diagnose and treat people with ongoing lifelong pain. Keep the Dr/patient relationships together, without intrusion or interruption in patient care!
    • Please keep in mind that chronic pain does not = addiction.! Just because someone needs opioids to help high amounts of pain (*that will most often, never go away), does not make them an addict. It shouldn’t give them the label of “substance use disorder” either!
    • Do Not make the Hippa privacy laws a joke or obsolete. Confidentiality matters! In order to have any confidence in your health care team, you must trust them. What I’m saying is that the police departments and other employees of the government or anywhere, should NOT BE GIVEN ACCESS TO THE MAPS*! The MAPS are already invasive enough without giving access to everyone!

    There are a few good parts to the draft:

    • The suggestion to treat each patient on an individual, patient by patient basis.
    • Stop raiding innocent Drs offices.
    • Stop taking physicians livelihood/careers away because someone at the top of the ladder at the HHS, CDC or elsewhere; lost a brother, mother or best friend, to opioid abuse &/or addiction, that ended with a death, loss and then turned into bitterness!
    • Give more hours of education in pain management to medical students

    Lastly, opioids are a safe, effective and an inexpensive way to treat lifelong chronic pain, for many patients in this category. They help & work for so many! Especially legacy patients with multiple high pain comorbidities, depend on opioids to have some semblance of life. I know, because it happened to me and I lost my LA/ER pain medications in Sept 2018. I have a much less full life now.

    The PTSD, that chronic pain patients are living with after being legacy patients who had been doing well taking opioids for a decade or two or three, is a nightmare! People are becoming a shell of their former selves. Persons with multiple & painful comorbidities, who were able to possibly do a job, be a mother, father, caregiver or grandmother, while taking opioids (*also btw, never getting high from their opioids!); are doomed to live a half-life in bed or a recliner forever. Many are committing suicide.

    I read some nasty comments on an article recently (I’ll look for that article. Sorry, I can’t remember where I saw it, but I will find it and post for you asap). There were comments from a person who lost someone to an opioid overdose/addiction. She said she was  “tired” of hearing about pain patients contemplating suicide. Tired of seeing where chronic pain patients have written in whining that “if they don’t get their pain meds back they will kill themselves”. Well, I pity that lady because she’s obviously never gone through anything that involves long term, never ending high amounts of chronic pain. The chronic pain population needs to know that there is hope. Because someone doesn’t contemplate suicide, where there is “Hope”. So someone please tell that woman to “chill out” and to “be kind”. Also, tell her not to cut down, put down, belittle or be insidious about life long, never ending, high amounts of daily chronic pain.  Unless she is in my shoes/our shoes, our wheelchairs, walkers, crutchs, braces and motorized scooters, don’t judge!

    Unless you’ve lived with high levels of continuous chronic pain that you know will never ever stop; don’t judge the chronic pain patient who chooses suicide over being a burden to their loved ones. Maybe they have no loved ones and cannot bear to be alone forever with such high amounts of under-treated or untreated pain? Don’t judge someone who’s been doing well for over a decade and suddenly they lose their pain relief and they’ve resorted to “living” a half-life in their bed or a recliner.

    These drafts really need more work. There are a lot of contradictions. Tylenol/Acetaminophen is very dangerous and can kill it cause liver failure if taken continuously. Which is what a chronic pain patient will need! NSAID’s cause kidney failure and anyone who thinks Tylenol or Aspirin will help pain levels at a 7,8 or above; doesn’t know anything about pain. In fact, they’ve never lived with ongoing chronic pain illnesses that are Incurable.

    Lastly, meditation, grounding, yoga & aqua therapy are nice for PT patients rehabilitating. They’re fine for some people as an addition to pain medication therapy. But they’ll never work alone to end or relieve high amounts of pain for a person who will most likely need pain control forever. It’s just impossible for anyone to go several times weekly and pay for PT forever! Not everyone has access to a pool. Then there are those of us who have open sores from secondary illnesses or from systemic autoimmune and other issues. I’m sorry, but “grounding” is just silly and I’m entitled to my opinions; as are each one of us.

    The above paragraphs are my thoughts about some of the HHS Draft for Pain Best Practices. I’ve got to condense these thoughts so that I can actually leave a comment. With the government shut-down, I’m not sure exactlly what will be happening to this side of things? If I find out any more, I promise to inform all of you.  But lets still get those comments posted before April 1, 2019. If we follow the rules, then hopefully someone will hear us. If we wait to see what happens, it may be too late.

    Remember not to be long winded. My comments will be condensed version of my issues with the HHS Draft. I will post it for you once I’ve gotten it all set up on the .gov website). Tell them who you are and how you feel about the HHS Draft for Pain Best Practices. Let them know that there are many contradicions in this draft. There are so many things wrong with telling someone who is living with #’s 7,8 or 9 on the pain scale, to take NSAID’s or Acetamenophin. Theres definitely something ludicrous about taking opioids away from someone who’s been doing great with them for a decade or two or three. Opioids are harmless, with very low or no side effects. When taken properly as prescribed for long term chronic intractable pain.  On the other hand, if you research Suboxone and Bupenorphrine. They have horrific side effects and you cannot taper off of them slowly because the medication works against you if you attempt to do this. I have  received several written accounts from chronic pain patients who believed in their physicians and blindly took what was offered to help their pain, as a last resort. They thought it would be better than nothing. (*these accounts will be in a future blog post).

    MY OWN COMMENTS:

    I have been living with high amounts of chronic pain on a daily basis since a catastrophic car accident in 2002. I did all that was asked of me as far as having 8 surgeries, 9 years of PT, 3 years of TBI rehab and 3 years worth of pain clinic Biofeedback and  injections to my knees, shoulders, neck and spine.  I am not a candidate for a pain pump, due to CVID. I tried many medications and most either made me deathly ill or just had horrible side effects that added to the pain. My story is not unique. Many thousands of chronic pain patients attempt to do all that they can do, prior to taking opioid pain medication. When pain is lifelong, whether you are old or young; the idea of staying in a state of high chronic daily pain for decades upon decades, is daunting.

    This draft needs much more work. There are too many contradictions.  There especially needs to be more done for the legacy patients who have been doing well on Opioid therapy for chronic pain.  Legacy patients, like me, are being put into “no win” situations. We have had our medications forcibly taken after doing relatively well for years. Forced tapering is bad for anyone.  It is life altering, dangerous and has taken lives. Why would you mess with something that is not broken?  If someone has been doing well, how could you fathom stopping the regimen that gave them some semblance of a life?  Then what? Then these people are unkowingly prescribed horrible meds like Buprenorphrine / Suboxone.  After much research, it seems like most of this manufactured “opioid hysteria” is for money making. That is shameful to use and even kill innocent people just to allow someone else to get rich.

    Why are we making insurance companies pay for all of this acupuncture, massage and yoga etc? Those dont work for long term chronic high pain illnesses where the patient deteriorates as the years go by. The majority of chronic pain patients that I know, say that they don’t want to be poked or even touched, because it hurts too much. This is not a solution. Please try to understand the reality of this situation. Don’t allow people who are living with high emotions, to be in positions of power, in charge of important decisions for the chronically ill. Persons with powerful positions who are greiving & who have lost someone from an overdose shouldn’t be making decisions that affect & involve millions of lives. Most people who have lost a family member or close friend from an overdose, won’t be rational in their decision making. Then they end up punishing an entire community of innocent people because they lost someone (*usually their loved one had overdosed by taking someone else’s prescription or illegal/illicit drugs to numb psychological pain).

    Please stop demonizing Opioids and selling the idea that these inanimate objects cause addictions and drug overdose. Addiction is a gene that someone is born with. It shows up in some people and not others. Opioids do not kill people any more than guns kill people. It is when the opioids or the guns who get into the wrong hands. Then the people behind them choose to make terrible decisions and others then die from drug overdose, homicide or suicide. Please remember that opioids are inexpensive, accessible (or they were) and they have few or no side effects. They have been helping many chronic pain patients for years and years. The medications are not “bad”, it is the people who obtain them illegally and then do things to the medications or with them, other than the intended purpose. That is what is dangerous and killing people. 

    Chronically ill persons living with high pain illnesses cannot take Tylenol or NSAID’s for the rest of their lives without horrible effects and outcomes. Those medications are not made for long term. They cause liver and kindney failure and worse. Also, this same group of ill citizens, are usually unable to do or pay for complimentary therapy treatments for decades at a time. Lastly, please leave the pain care physcians or any physician trained properly in the management of chronic intractable pain, to make the decisions that affect the pain community. These Dr’s have been highly educated for many extra years, in order to learn how to treat chronic pain.  Stop politicians, PROP, Addiction specialists, pharmacists, the CDC, FDA  and insurance companies from making medical decisions that should be left up to the Dr. and patients themselves. Thank you! Sincerely, Suzanne Stewart

    Health experts offer solutions for unintended consequences of opioid crackdown | Fox News


    Hello Luvs,

    This information came to me via an email & so I wanted to share it with you:

    The most urgently needed first step to addressing the misunderstandings about Centers for Disease and Prevention opioid prescribing guidelines, many clinicians and health experts say, is for the agency to clarify – in a high-profile way– what the guidelines were meant, and not meant, to do.
    — Read on www.foxnews.com/health/undoing-the-harm-of-the-response-to-the-opioid-overdose-epidemic-health-experts-suggest-solutions.amp

    Also, here is The Fox News Sequence of Stories Regarding the Opioid Hysteria & Chronic Pain Patients .

    One of several very special physicians, who’ve been helping fight for the rights of Drs and chronic pain patients is Dr Stefan Kertesz, MD. He is quoted in this article on Fox News:

    • “We’re targeting the most vulnerable and sickest people who have been on opioids a long time”.

    Dr. Stefan Kertesz, addiction specialist and professor at the University of Alabama at Birmingham School of Medicine.

    Richard Lawhern, a very staunch advocate for chronic pain patient community; is also quoted in this report. He is also advocating for his wife daughter, who live with chronic pain. Here is the quote from Richard aka “Red” Lawhern:

    • “The [CDC opioid guideline] document is fatally flawed and needs to be withdrawn for a major revision in an open public process by qualified experts in community practice for chronic pain treatment, assisted by representatives or advocates from chronic pain communities.”

    — Richard Lawhern

    Lastly, Lauren Deluca, founder of Chronic Illness Advocacy & Awareness Group“,(an ever growing & popular Non profit 501/3c) is quoted here:

    • “Too many flawed approaches and policies targeting pain patients, she said, “will take many years to undo, but we can’t wait years.”
    • She also was quoted as saying this: I myself was a healthy 36-year-old professional embarking on starting a family and in a blink of an eye my life was destroyed due to a denial of care,” Deluca said. “It’s not just about pain; it’s about quality of life. Now we are teaching doctors to ignore pain, which not only leaves the patient suffering but likely will lead to many not getting diagnosed, therefore not only will they not receive pain medications they will not even receive basic care.”

    Please read the entire Fox News series of three stories. They are focused on different aspects of this Opioid Hysteria. Also the lack of treatment and compassionate care for the chronic pain community. *The current story, (3rd in a sequence of three), and the other stories in the sequence can be located above. They are the first two, blue hyperlinks, near the top of this blog post.

    Lastly, I wanted to share something on the same subject but different platform. As I mentioned above, Lauren Deluca is the founder of CIAAG. (a Non Profit 501 c-3. The link to her group website is above, but let me add it here for you as well: Chronic Illnesses Advocacy: & Awareness Group)

    Link to The Documentary Trailer “Untreated: The Healthcare Crisis”

    She recently attended an International Meeting with the United Nations in Vienna. According to her website, Lauren spoke about the inhumane  treatment chronic pain patients are facing due to the ‘Opioid Crisis’ in the United States. 

    Here’s is a link to get you to a YouTube video that shows her speaking in person at the event:

    United Nations Office of Drugs and Crime: 61st Commission on Narcotic Drugs

    Please look over everything, that I’ve tried to present to you in one neat little blog post. I hope that you feel updated and possibly more optimistic about the changes coming in this New Year, 2019.

    Something must be done to change the deplorable conditions that have been put upon the chronic pain community! These great leaders and others, working together as a united front; that is how we are going to help make the changes that we need to see happen this new year!

    Thank you for coming back to visit and read “Tears of Truth”.

    They Fell like Dominos: My License, My Certification, My Profession


    Hello Luvs,This blog post is actually something that was written and sent to me by Dr Mark Ibsen, MD, a physician from Helena, MT. He wrote and says:

    “I had similar experience. 
    Guilty. 
    Not even “guilty until proven innocent”
    Just guilty. 
    Once they set their sights on you,
    You
    Are
    Fkkd. 

    This system is feudal. 
    Primitive. 
    Insensitive. 
    Ineffective. 
    Unchecked, as in no checks or balances. 
    Run by appointed people who are completely unaccountable. 
    No recourse. 
    In the name of “safety”, 
    With no evidence of harm. 
    Like a trip to the Gulag. 

    The key is for patients to realize that doctors have become so vulnerable that we cannot risk ANY exposure to ANY accusations. 
    A risk-averse environment due to the hostile regulatory environment we now have. 

    So, as more and more patients despair over being abandoned by this system, the sacred physician patient relationship is further tarnished. 

    I, for one, will continue to stand by the patients I can, and pray for those I cannot.” 

    Here’s the article that accompanied the email from Dr Mark Ibsen, MD:

    They Fell like Dominos: My License, My Certification, My Profession

    Mark Ibsen MD
    Helena MT