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. For now it is Password protected. Please contact me for the password if you’d like to read it.

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!

Protected: The Story of My Experiences With USPF


This content is password protected. To view it please enter your password below:

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.

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!!!!

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


Hello Luvs,

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

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

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

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

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

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

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

  • “The [CDC opioid guideline] document is fatally flawed and needs to be withdrawn for a major revision in an open public process by qualified experts in community practice for chronic pain treatment, assisted by representatives or advocates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

— Richard Lawhern

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

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

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

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

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

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

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

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

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

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

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

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


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

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

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

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

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

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

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

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

Mark Ibsen MD
Helena MT

Medicare Patients Face New Rx Opioid Rules in 2019 — Pain News Network


Hello Luvs,

I received this information from Pat Anson of the Pain News Network. This information may prove to be very valuable to many of the chronic pain community. I wanted to be sure that you saw this. I also wanted to be sure to share it with you all. This is the new Medicare 2019 rules regarding Opioids.

Medicare Patients Face New Rx Opioid Rules in 2019 — Pain News Network
— Read on www.painnewsnetwork.org/stories/2018/12/31/medicare-patients-face-new-rx-opioid-rules-in-2019

I hope your 2019 will be Blessed and peaceful. Sending light and love your way.