It’s Ok not to be ok


Hello Luvs,

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

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

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

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

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

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

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

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

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

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

1. Free your heart from hatred.

2. Free your mind from worries.

3. Live simply.

4. Give more.

5. Expect less, & enjoy every moment.

*Photograph by Karsten Thormaehlen

A Sad New Existence


I have never been either a Republican or a Democrat.  I vote based on knowledge and who I feel will do their best job for the people of this formerly free country, the USA. You can disagree with me after reading this post. You can choose to never read another one of my articles.  But I’m not mean, selfish, unkind or cruel to anyone, so there is no reason to treat me that way either. I’d like you to just hear me out, since I’m not a “finatic” of either viewpoint. But feel free to just keep scrolling if you don’t like what I’m about to write.

Our President, imho, has done his best from very early on, to save human lives. He stopped travel from China at the end of January, 10 days after the first diagnosed case in the USA. He did this while Nancy Pelosi was Encouraging people to go to Chinatown events in CA on 2-24-20. The radical Democrats were involved in their deep commitment to undo the 2016 election results and they were impeaching the President as he was still working for our Country and trying to keep us safe.  They were impeaching him for a phone call in which the witnesses (who were actually present) and the party on the other end of the telephone call, insisted there was no QPQ.  Every witness who was actually present, corroberrated the fact that there was no Quid Pro Quo involved.

I have never been one to write or chat about politics, especially on my Social media accounts. It’s a “no win” situation because everyone has the right to their opinion. By the way, having the right to voice your own opinion is starting to slip away from us in the USA these days. I’m tired of being silent. But as I start to come out and stand by by own beliefs and try to stand up for what I strongly believe to be true, I’m being verbally abused if I dare speak out against these draconian rules in all but a handful of states.  While they feel free to voice their opinions, they attempt to deny me the right to discuss mine. I never mind having kind and civil discussions.  But if you call me “stupid” or let your “Facebook buddies” call me “ignorant” and/or worse, then I am going to be blocking you. I’m losing my Facebook friends, long time social media buddies, because I dare voice my opinion with data to back it up.

But why should I be surprised? I was a very outspoken and strong advocate for the pain community for many years, from 2008-2018/19.  But since I had an auditory/brain tumor removed surgically, this past Summer 2019; people are “unfriending” me because I’m of no use to them any longer. I have had several commendations (since 2008), for helping others who live with High Impact Chronic Pain due to several various illnesses.  I was awarded a “Special Tribute” from the Governor of Michigan in 2017, along with the U.S. Pain Ambassador of the year award in February of 2017.  I’ve continued posting updated and reliable information to the High Impact/Chronic Pain and RSD/CRPS communities. I try to still lend my support as I’m able in my own support/info groups. There are a few people who have stood by my side and even offered to help me with my groups.  For them, I am eternally grateful and I am blessed to have them in my Life and/or social media life. Some of them have different opinions about politics; but we have managed to separate that and stay friends. The reason I brought this up, is because it seems that in the past few years, people seem to block, berate, degrade, be rude, act abusively and “run away”  from anyone who does not think or feel the same way as they do.

The USA is my country and I’ve always been proud to be an American. I’ve never been and still am not “Right” or “Left”. I guess you could say I’m “Right to center”.  I have voted for Republicans and Democrats in the past. I’m just really sad and tired of seeing this POTUS berated day after day for 3 years now.  He has actually has a great timeline of actions that have been helping with this COVID-19 crisis, including trying to keep us from a big Depression.  Many citizens are tired of hearing how our President “called this virus a hoax and did nothing until March 2020”.  So I did reseach and here are highlights from the timeline during January-March 2020.(the list is so long & full, I only highlighted January-March 2020 *parts of this list are from the White House website & other parts are actual Tweets from the WHO & CDC etc)

  1.  January 11, 2020:  CDC tweets about Corona related “pneumonia outbreak in China”
  2.  January 14, 2020:  WHO tweets that there is no evidence of human to human transmission
  3. January 17, 2020:  CDC started doing health screenings at 3 airports of travelers from China
  4. January 21, 2020:  the first COVID-19 case in USA for someone who traveled directly from Wuhan
  5. January 23, 2020:  WHO again says no human to human transmission outside of China
  6. January 28, 2020:  CDC states “While CDC considers COVID-19 a serious situation and is taking preparedness measures, the immediate risk in the USA is considered low”
  7.  January 29, 2020:  White House announces Coronavirus Task Force created.  Note:  this is despite the WHO downplaying the threat
  8. January 31, 2020:  President Trump bans travel from China.  The media and multiple Democrats slam his decision calling it racisist and xenophobic.
  9.  February 5, 2020:  President Trump was acquitted (impeachment)
  10.  February 5, 2020:  Chuck Schumer, in a tweet, continues to call POTUS’ travel ban from China “premature”
  11.  February 7, 2020:  White House’s Coronavirus Task force gives press briefing
  12.  February 9, 2020:  White House Coronavirus Task Force meets with all Governors
  13.  February 12, 2020:  CDC waiting for approval from Chinese for CDC team to travel to China
  14.  February 18, 2020:  HHS announces partnership to develop a vaccine
  15.  February 21, 2020:  Italy identifies its very first case of COVID-19 in their country
  16.  February 21, 2020:  CDC tweets that it is working with states for preparedness
  17.  February 24, 2020:  POTUS sent letter to Congress asking for $2.5 Billion for virus effort
  18.  February 24, 2020:  Nancy Pelosi was touring San Francisco’s Chinatown to “quell Coronavirus fears”.  She encouraged peopl to “please come and visit and enjoy Chinatown”.
  19.  February 25, 2020:  there is still no reported community spread in the USA (per CDC tweet)
  20.  February 27, 2020:  first community transmission in the USA
  21.  February 27, 2020:  President Trump appoints VP Pence to coordinate efforts
  22.  February 29, 2020:  FIRST reported Coronavirus death in USA
  23.  February 29, 2020:  The Trump administration:  A)  announced a level 4 travel advisory to areas of Italy and S. Korea,  B)  Barred all travel to Iran.  C)  Barred the entry of foreign citizens who visited Iran in the last 14 days.
  24.  March 3, 2020:  The CDC lifted federal restrictions on coronavirus testing to allow any American to be tested for coronavirus, “subject to Dr.’s orders”
  25.   March 3, 2020:  The White House announced President Trump donatated his fourth quarter salary to fight the coronavirus
  26.   March 4, 2020:  A) The Trump administration announced the purchase of approx. 500 million N95 respirators over the next 18 months to respond to the outbreak of the novel coronavirus.  B)  Sec. Azar announced that HHS was transferring $36 million to the CDC to help state and local communities that have been impacted most by the coronavirus.
  27.  March 6, 2020:  President Trump signed an $83 billion bill to fight the COVID-19 outbreak ($7.76 billion to federal, state & local agencies to combat the COVID-19 and authorizes an additional %500 million in waivers for Medicare telehealth restrictions).
  28.  March 9, 2020:  POTUS called on Congress to pass a payroll tax cut over coronavirus
  29.  March 10, 2020:  President Trump and VP Pence met with top health insurance companies and secured a commitment to waive co-pays for COVID-19 testing
  30.  March 11, 2020:  President Trump:  A)  announced travel restrictions on foreigners who had visited Europe in the las 14 days  B)  Directed the Small Business Administration to issue low-interest loans to affected smal business and called on congress to increase this fund by $50 billion  C)  Direccted the Treasury Dept. to defer tax payments for affected individuals & businesses , & provide $200 billion in “additional liquidity”.
  31.  March 13, 2020:  President Trump announced:  A)  public-private parnerships to open up drive-through collection sites.  B)  a pause on interest payments on federal student loans.  C)  An order to the Dept. of Energy to purchase oil for the strategc petroleum reserve
  32.  March 14 2020:  POTUS announced the European travel ban will exten to UK and Ireland
  33.  March 15, 2020:  Google announced a partnership with the Trump admin. to develop a website dedicated to coronavirus education, prevention and local resources
  34.  March 15, 2020:  all 50 states were contacted through FEMA to coordinate “federally-supported, state-led efforts” to end coronavirus
  35.  March 16, 2020:  POTUS A) hele a tel-conference with Governors to discuss preparedness and response to COVID-19  B)  POTUS participated in call with G7 leaders  C) POTUS announced the 1st potential vaccine for COVID-19 has entered phase I trial in record time  D) POTUS announces “15 days to slow the spread”
  36.  March 17, 2020:  POTUS announced:  A) CMS to expand benefits for Medicare beneficiaries  B) Relevant Health Ins. Portability & Accountability act penalties will not be enforced  C)  The Army Corps of Engineers is on “standby” to assist federal & state governments
  37.  March 17, 2020:  POTUS spoke to fast food executives  from Wendy’s, McDonald’s & Burger King to discus drive-thru serves recommended by CDC
  38.  March 17, 2020: the treasury dept:  contributed $10 mllion to Federal Reserve’s commercial paper funding facility and deferred $300 billion in tax payments for 90 days without penalty, up to $1 million for individual and $10 million for business
  39.  March 18, 2020:  POTUS signed the Families First Coronavirus Response Act, which provides free testing and pain sick leave for workers impacted by COVID-19
  40. March 18, 2020:  President Trump announced:  A) temp. closure of the USA/Canada border to non-essential traffic  B) Plans to invoke the Defense Production Act  C) FEMA has been activated in every region at its highest level of response D)  The US Navy will deploy USNS Comfort and USNS Mercy hospital ships.  E)  All foreclosures & evictions will be suspended for a time **Also HHS temp suspended a rgulation that prevents Dr.’s from practicing across state lines.
  41.   March 19, 2020:  POTUS announced very encouraging progress shown by anti-marlaria drug Hydroxychoroquine for fighting coronavirus
  42. March 20, 2020:  USA and Mexico mutually agree to restrict nonessential cross-border traffic
  43.  March 20, 2020:  President Trump spoke with Sen. Schumer about Coronavirus response and stimulus measures   B)  he held a call with over 12, 0000 small business owners to discuss relief efforts  and he C)  announced the CDC will invoke Title 42 to provide border patrol with tools to secure the borders
  44. March 21, 2020:  POTUS admin announced HHS placed order for hundres of millions of N95 masks through FEMA
  45.  March 22, 2020:  POTUS made disaster declarations for CA and Washington state and he announced:  A)  Governors will remain in command of Ntl Guard forces & the federal govt. will fund 100% of operations cost and  B)  He directed the federal govt to provide 4 large federal medical stations with 2,000 beds for CA and & 1,000 beds for NY and WA and C) POTUS announced that the USNS Mercy will be deployed in LA
  46.   March 23, 2020:  President Trump signed and executive ordere invoking section 4512 of the Defense Production Act to prohibit the hoarding of vital medical supplies
  47.  March 25, 2020:  President Trump signed a bill reauthorizing the Older Americans Act, which supports senior citizens by providing meals, transportation and other curcial services.
  48.  March 26, 2020: POTUS did vido conference with G20 leaders to discuss global COVID-19 response and the need for countries to share information and data and POTUS also had a call with Chinese President Xi Jinping to discus coronavirus
  49.  March 27, 2020:  President Trump signs the CARES Act in law  (*Coronavirus Aid, Relief, and Economic Security Act)
  50.  March 29, 2020:  POTUS met with supply chain distributors including Fed Ex, and UPS and others to discus getting medical supplies to state and local govt.’s
  51.  March 30, 2020:  President Trump announced the Federal Govt. will be delivering:  400 ventilators to Michigan, 300 to New Jersey, 150 to Louisiana, 150 to Illinois & 50 to Connecticut and POTUS also pledged $100 million of medical supplies to aid Italy’s battle against COVID-19
  52. March 31, 2020:  A)  POTUS announced the Treasury Dept. & SBA rapidly mobilizing money from the CARES Acts $349 bilion paycheck protection program, with the program set to be “up & running by April 3, 2020. B)  He also Spoke to Michigan’s Governor Whitmer about the states need for ventilators C)  POTUS instructed the Army Corps of Engineers and FEMA to construct several hospitals and alternative care facilities

It is helpful to look at the actual timeline.  All of this started to happen before the first death linked to COVID19 https://www.nbcnews.com/news/amp/ncna1189286 in the USA.  I got most of the information from the CDC tweets, so anyone can look it up to check for accuracy. There are so many other actions in between but I just took some of the highlights & ended mine at March 31 2020. The first several actions that I’ve listed through 2/29/20, were copied from a friend.  But you can take a look at the entire list here at:  List of all of the things that President Donald Trump has done to help combat the novel coronavirus

As I mentioned above, I’m not a Democrat or a Republican. I base my choices on facts (not hated, fear or other emotions) that I gather from watching and listening to all sides.  But honestly, many people have never given our President a chance.

Lastly, I have been & I am following the rules. I am also praying that someone can save us from something far worse than this virus. There are some things worse to lose than our lives. Losing our liberties, our freedoms and the freedoms for our children & grandchildren is something we need to protect. It was just fine to shut down for a few weeks, but not a few months or longer! Anyone who is afraid to go out, should feel free to stay in the safe, solitary confinement of their homes. Protect the elderly, the sick and the most vulnerable (meaning nursing & other homes for the sick). But we should have a choice, because this is the USA! Last time I checked, we were and are still a free country! When they (Dr Fauci, Kolodny & CDC) took pain meds from the chronic pain community in or around 2016 (with the new CDC guidelines), they removed the freedoms from the physicians & patients to decide what is best for their personal pain illnesses. At that time & ever since; the pain community has tried to fight back. I know this because I’m a part of that pain community.

Now we need to work hard at getting our freedoms back! I didn’t mind staying in my home for a few weeks-(2 months) or wearing a mask for a little while to help stop the virus! But there will be many more viruses to come! I don’t want to stay indoors separated from not only society but family; or wear a mask forever! It causes me anxiety and inability to not only breathe freely- BUT I AM DEAF!! I can’t even communicate with anyone who doesn’t know ASL when you’re all wearing masks!! It also takes away my ability to lipread & try to piece together what you might be saying.

C’mon- we don’t stop flying in airplanes or driving cars because of the possibility of a crash!! Road traffic crashes are a leading cause of death in the United States for people aged 1–54 The CDC website on Death from car accidents 2019

Hell, I survived a catastrophic car accident in 2002! I’m still here after 11 surgeries, lots of high impact chronic pain, a pacemaker (x2), a heart attack and a stroke! Let’s live our best life while we are here! Protect the freedoms for our families! We cannot roll over now! Please read a variety of news articles and watch a variety of News shows! You won’t get the truth from just one!! Put all of the information you receive together and make your own informed decision. If your decision is to wear a mask forever, live in your house and get take-out; then by all means, stay home & stay inside! But if I want to go out, let me make that choice! Don’t allow that to be the choice of our Governors or even the President (*except for a short time during an emergency)!!

Lastly, I’m not being selfish! I’m saying please stay inside if you are afraid or vulnerable. But let it be our choice and not an Executive order from a judge, Governor, President or any radical person with a gavel!

Justice Served? What’s your opinion?


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

What do you think? Has justice been served?

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

Trauma Resurfaces The Pain of Yesterday!


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

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

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

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

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

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

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

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

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

Suzanne, age 11 years

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


Hello Friends!

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

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

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.

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!

Do No Harm?


There’s a tragedy that’s happening to not only me, but millions of U.S. citizens, almost daily now. It seems that each month, many pain Dr.’s are terrorizing, demeaning, denigrating & dropping their sickest patients who live with mostly life-long chronic & disabling painful illnesses. (I’ll be referencing my personal experiences for the purpose of this writing).

My Pain Management Dr. seems to be terrorizing me just a little bit more….then a little more etc.. When I started there several years ago, he had tears in his eyes, as I sat sharing my history and past test results with him. He told me he would take me on as a patient if I’d be willing to stop taking this one quick acting pain med. (*of course after 12 years taking it), my body went through physical dependence w/d and I felt horrible for awhile, but I got through it. My heart Dr helped by prescribing 2 meds to help me physically. Things went along OK, until my PM Doc, told me, during my September 2018 visit, “that he was stopping my LA/ER medication”. He informed me he would begin, THAT day, all at once-“cold turkey”. I didn’t freak out, but I reminded him of my past h/o stroke and heart attack and how it’s not safe. He said he’d “let” me have 1 more month at 25% less, “to help me be psychologically ready”(wth???)… so I went with it. Next, I called my heart Dr and GI dr & they wrote a letter to my PM Dr., stating “that this wasn’t safe”. Also they explained how “it’s been working since 2003”. They pretty much wrote, “don’t mess with what is not broken”. They also reminded him of my illnesses, including Gastroparesis & my history of a stroke, heart attack !

The PM Dr became quite angry & said “their medical license isn’t any better than mine! Let them prescribe it to you, if they want you to have it!”… he ended up doing a quick taper and covered his a_ _ , by offering me a LA/ER oral medication that he knows I cannot take because of the Long QT & Gastroparesis.

Ok ….so I stopped the patch, got sick -worsened pain etc/physically. I went from doing a lot of volunteer work to sitting in my recliner 16 hours a day-due to pain.

Therefore, NOW each month that I go to him, I get a stomachache, nausea & diarrhea etc. & my anxiety is high. Last month he decided to add to our little conversation that “he won’t interfere right now”, but “they” want chronic pain patients to stop taking anymore anxiety medications. I’ve been on mine -(a very low dose) barely once a day (I take zero for many days at a time also)… but he says since HE doesn’t prescribe it, HE will not interfere “YET”! But soon he won’t be able to prescribe my short acting pain meds, if I am prescribed my small amount of anti-anxiety meds! Then he let me go home…until this month.

This month he surprised me with the fact that not only IS HE FORCED to prescribe me Narcan, but that I MUST pick it up if I want my pain (SA) medication!!! I told him “I don’t want or need it! I’ve been on less than I had been taking! Also, I have never had an issue since the guy ran a red light and hit me with his car and started all of this!!” He insisted, so I shut my mouth and left. He continued to send both scripts to pharmacy. But first he had to tell me how the “Narcan is like a fire extinguisher! You keep it around in case you need it!” Ok, but it’s different than that because a fire could possibly happen!! But me overdosing is NOT a possibility, when I’m on half of what I’d been on since 2003 -until now!! I NEVER TAKE MORE OR TOO MUCH!

I told my husband that I didn’t want the Narcan in my history, my records and I don’t want to be somehow misrepresented or “flagged” and I instructed him to “Not pick it up”! He went to the pharmacy & talked to the pharmacist. They told him “that was fine. The Dr. can offer it but I don’t need to accept it”, especially since I don’t have SAD or SUD!! Also, it was not covered by my Medicare advantage insurance plan. It would’ve cost $120 “out of pocket” !!!

Tell me what’s wrong with this picture?? Drug addicts are given free needles and free special clean disposal of those needles even in selected Starbucks stores now!! Addicts are given FREE Narcan!! What the hell is going on in this country?? A good, law abiding NON-addict has to pay and be punished for doing nothing–ZERO WRONG..& is told they must pay $120 for something they don’t want or need!! Nor will they ever need (btw, the pain management Dr explained how this Narcan expires yearly & I’d have to get a new one annually!!!????)! This is crazy, ludicrous and it’s “Market rigging!” They want sick & disabled people to pay for items that are not necessary and rig it so that they will not give them the pain medication that they need, unless they do so!!

This is wrong and bad and absolutely not right or lawful!! The pharmacist told us that we don’t HAVE TO get the Narcan filled & it’s not covered by insurance. It costs $120 out of pocket!

You can guess what happened and I’m good for another month! Until next month when I’ll be badgered, intimidated, terrorized! Also, the Dr (but actually the government in my Dr.’ chair) will try to fear monger me into less medication or some other life altering medication switch that I don’t want &/or cannot take!

Why can’t they leave us alone? Let me continue my treatment plan that has worked for 14-15 years?? Why do they have a need to terrorize us, demean us and eventually kill us all off ?? It’s all about money & big government studies without our consent!! It’s all about “Control” and “getting rid of the sick and most weak” persons in society so that we don’t drain the system without being productive!

What about all of those years that I worked and paid money into social security?? I deserve that back and I’m not getting government hand-outs!! Why is this happening?? This is all crazy Eugenics, Nazi B.S. !! Someone please help the chronic pain community NOW!! Before it’s too late!! A news station, a politician or a celebrity with a big voice, PLEASE HELP US NOW BEFORE ITS TOO LATE! I have lost several friends already because of this FAKE …NON-Prescription opioid / Opioid crisis!

Wake up American media, &/or politicians who have a heart; who aren’t money hungry or power hungry!! Wake up and help these citizens. There’s a large group of 100 million chronic pain patients who need you to step in and DO something to stop the suffering!!

The INTERNATIONAL Association for the Study of Pain (IASP), says that suffering is inhumane and unnecessary! International Association for the Study of Pain

Preamble

“The mission of the International Association for the Study of Pain is “to stimulate and support the study of pain and to translate that knowledge into improved pain relief worldwide.” Its overall vision is “Working together for pain relief throughout the world.” The most preventable form of human pain is that inflicted in the form of torture and inhumane treatment, whether physical or psychological. The participation by IASP members in acts of torture or inhumane treatment is therefore against the fundamental principles of the Association.

“For the purpose of this Declaration, torture is defined as the deliberate, systematic or wanton infliction of physical or mental suffering by one or more persons acting alone or on the orders of a public authority, to force another person to yield information, to make a confession, or for any other reason.” [World Medical Association. Declaration of Tokyo (1975). Adopted by the World Medical Association, Tokyo, Japan, October 1975.]”

S.O.S……HELP US!!!!