Let Freedom Ring


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

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

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

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

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

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

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

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

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

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

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

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!

Accessibility A Legal Right


Hey Everyone!

This is a great article from Rikki Poynter and it hits home with me, too! Many of my friends who live with either Deafness/Hearing loss &/or disabilities requiring the use of wheelchair,walker or cane etc, may feel a connection to the stress that Rikki Poynter shares in this article.

Some of us are feeling also the stress of not have accessibility to proper medical care for our high impact chronic pain illnesses. This has been constant since the CDC Guidelines were implemented in 2016, without any pain physicians present at the discussions.

I wanted to share this article because I can feel for her experience and so many people don’t “get it”. Here’s the article: http://www.rikkipoynter.com/articles/event-accessibility

For information or questions regarding the ADA or “Americans With Disabilities Act”, please visit: Link to the ADA website

You can follow Rikki Poynter at Twitter, Instagram and Youtube at: https://www.youtube.com/user/rikkipoynter

And on Twitter:
Rikki Poynter on Twitter
(Check out Rikki Poynter on Twitter: I’m deaf and disabled and, you know, stuff. YouTuber & Public Speaker | #NoMoreCRAPtions | PATREON: https://t.co/BsMiMuxDF5 | rikkipoynter@gmail.com)

Link to Rikki Poynter on Instagram

Just a Photo of me with my purple glitter aids
Me with my family in town, on a Summer day
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Testimony From A Pain Patient, Re: Suboxone And Bupenorphrine


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

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

1) Regarding Bupenorphrine & Suboxone

3) About Suboxone, Bupenorphrine & Naloxone

4). More About Suboxone & Bupenorphrine

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

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

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

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

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

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

1.  Why Suboxone Treatment Can Be Harmful

2. The Suboxone Conspiracy

3. the ugly truth about suboxone withdrawals

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

Here is one Testimonial:

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

Chuck Malinowski

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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

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

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!

A Letter To RFK (Human Rights) Foundation


RFK Human Rights Group: Watch Video

Hello Luvs,

I was sent a video about the RFK, Human Rights Group. It’s led by Kerry Kennedy, daughter of the late Robert Kennedy. She is an attorney and she now leads this human rights group: RFK Human Rights group website

Immediately, I drafted a letter to her and sent it. Below, I have copied/pasted the exact letter that I sent to Ms. Kennedy. Something must change! The “Opioid Hysteria Crisis” is one of the worst nightmares I’ve witnessed &/or experienced. Watching a large group of approximately 26 million (out of the 100 million people living with chronic pain) human beings, systematically tortured to death has been horrendous. To be a witness to this despicable, willful & planned money making scheme, is nauseating to say the least! I’ve watched as the innocent chronically ill people in our pain community die and continue to die on a weekly basis. Maybe I will be next? So I pray that doesn’t happen and that I keep fighting.

I have been a very active advocate/activist in fighting for the rights of people in the chronic pain community. I have led the fight as far back as 2007, in spreading awareness, doing fundraisers, leading several online support groups & then being certified & leading “in-person” chronic pain support groups as well. I’m certified in pediatric RSD/CRPS, as well as being the Social media assistant for RSDSA. I’m a freelance writer with a blog (this one, @tearsoftruth.com) that has been nominated twice for “Best In show- blog by WEGO Health Awards. I was invited by IDA ( Invisible disabilities Association) to do & ultimately did a featured video on their “Invisible No More” YouTube channel. In 2016,’17 & ’18, I had 42 articles published. I was one of the many advocates/Drs/nurses etc., who helped edit & sign the letter to Brandeis University, demanding that Andrew Kolodny be fired for his leading role in the torture & deaths of multiple chronic pain patients (due to forced tapering & the 2016 CDC Guidelines).

Lastly, I was awarded the “US Pain Ambassador of the Year Award” in 2016. Afterwards, I was asked to be on the USPF Board of Directors (*a volunteer position which I accepted & later resigned after only 8 months. If you want to read more about that, visit: Why I resigned from the US Pain Foundation).

There’s more, but you get the idea. Sadly, since last Summer, 2018, I had my LA/ER pain medication forcibly & quickly tapered between July 22 –September 1st, 2018. I’d been doing reasonably well on a stable dose for 14 years. Since then I can often be found in my “Lazy boy” type of recliner, approximately 16 hours per day. I continue to do my best with my online support groups and I continue to fight for us via my blog/writing, support groups, mentoring for RSDSA, Social media Support for RSDSA & Deaf/HoH communications Director for CIAAG. I try to support everyone and stay out of any drama. I’m doing all that I can do at this point in time.

This is inhumane and torturous for the USA to be treating their citizens this way! Someone please help us!

Here’s the letter that I wrote to the Human Rights Watch group, run by Kerry Kennedy:

Dear Ms. Kennedy 

I’m writing to you today because I know that you help people who’ve had their human rights violated. I represent only one out of 100 million people in the chronic pain community. Out of that number, there are an estimated 26 million of us who urgently need your help.  Many people in the United States of America are  dealing with horrific pain on a daily basis.  I stand along with them  & implore you to help put an end to the violation of human rights that is taking place. 

The CDC, DEA and “Big Brother” Pharma companies are “hurting” the American chronic pain Community. We are losing access to medically necessary medications that enable us to live some semblance of a life. 

We are and have been losing access to our pain relieving medications since the implementation of 2016 CDC Guidelines.  We are  being “lumped together” with illicit drug users and addicts. Every time a celebrity dies of an overdose, they blame the pain meds as the cause of death. But really it’s the misuse and abuse of pain medications along with the use of recreational street drugs. 

A Dr. should not be afraid to prescribe Opioid pain medications to their patients because of repercussions from the CDC or DEA. But our pain Physicians are leaving in droves because of them & the 2016 CDC Guidelines. 

The  “Opioid epidemic” is about illegal/illicit fentanyl brought here from Mexico & China. It’s not about us, the 100 million chronic pain patients in the USA. Only 1% of legitimate chronic pain patients who are legitimately prescribed opioids, for high amounts of pain, ever become addicted. It’s as though our country is now torturing and punishing people for being ill.

Ms. Kennedy, we are not addicts and we are not “addicted”.  A person can be “dependent” on a medication and not be addicted! They are two very different situations. We are not addicted to our medications and we do not get cravings nor do we get “high” from them. An addict seeks out their “drug of choice” at any cost.  They look forward to taking them because of the “high” they get. A legitimate chronic pain patient who’s done well for years on a stable dose of opioid pain medication, doesn’t get any sort of “high”.  We also take our medications responsibly.  We get some relief and reprieve from the daily chronic pain that we live with. 

Please help us get back the physician / patient relationship, without interference from Pharmacy’s, insurers, the government and politics.  Please help us to keep our Drs in charge. It should be the decision between patient/physician to choose what is necessary and best for our pain control. They went to medical school and the government did not.

Many pain management Dr’s are leaving the practices they’ve built and the profession they’ve worked hard at, to achieve. They’re  afraid because they are being wrongly targeted by the DEA . They aren’t free to prescribe medications that help to relieve pain anymore. 

People in the USA in 2019 are being tortured and hurt by this on a daily basis. Just yesterday, I read the story of a 94-year-old woman who shattered her kneecap and was taken to the hospital emergency room. They immobilized her knee and sent her home without any pain control at all. Can you even imagine shattering your kneecap and not getting any thing to help with a torturous pain like that?
Ms. Kennedy, please help us? I understand there are people who die from overdoses. But they are a totally separate group of people who need a different kind of help. It shouldn’t be at the expense of an entire separate community of citizens. People In pain are being taken off of their Opioid pain medication during one visit to the Dr’s office. Often it’s a Dr. that they’ve gone to for years and they’d been living some semblance of a life while on a regimen of medication for pain control. But because of “fear”, Dr’s are taking away the little bit of life that some of us have left. 

I also don’t believe that anyone should be FORCED to have an invasive surgery in their spine or anywhere for that matter; when an inexpensive & safe pill, with little side effects can help so much. 

I implore you to help the estimated 26 million chronic pain patients in the USA, who are “dependent” on opioids for pain control & who are diligent and take these medications responsibly. Help us to get back the freedom of choice. Get us back to the pain management medication regimens that are life sustaining for us with more tolerable pain levels.

Please read my letter and talk to me if you’d like. We need you to understand that we are “chronic pain patients” and not “addicts”! We are just real people living with unfortunate circumstances & high pain illnesses. Please help us to receive the medications that give us some semblance of a life for ourselves & our families.

Sincerely,

Suzanne B. Stewart
Recipient of U.S. Pain Ambassador of the Year Award‘16, Mentor & Social Media Coordinator @RSDSA, freelance writer, Blogger/Blog “Tears Of Truth” @tearsoftruth.com, Patient leader WEGO Health, HoH/ASL, Director of communications for Deaf/HoH for CIAAG, patient advocate for Deaf/HoH
“Out of suffering have emerged the strongest souls; the most massive characters are seared with scars” ~Khalil Gibran~
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