All For One, None For All


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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Fear Instead Of Trust


Hello Luvs,

Sorry I’ve been quiet for a little while. I recently went to get new hearing aids. I was so excited to get new ones after 10 + years with my old Rextons. I was awaiting new insurance after my husband retired.

I went to see the audiologist & afterwards she asked if I’d be willing to see the nurse practitioner. I agreed, & afterwards they told me that I needed a CT scan because my hearing had declined so much more on the right side. They set up an appointment with their ENT Dr., the day after we returned from visiting our daughter, son in law & grand babies. I was a bit curious as to WHY they were telling me to come the day after I got home? I would be in pain and exhausted. But it never entered my mind what I would find out next!

So, when we were in Texas, I got an email message telling me that my CT results were available in the hospital’s portal. I know there’s a disclaimer stating that “you can find out things about the gender of your baby, HIV or other illnesses, even cancer”. In other words, do not look if you don’t want to know until you’re sitting with a Doctor.

But I’ve been through a car accident, deafness, multiple chronic pain illnesses & approximately 9 surgeries just since that accident. I can handle it, right? It can’t be bad if they already put it in the portal…can it?

It’s not bad…. it’s worse than that. I’ve never been so terrified in my entire life! I don’t even know how to verbalize my fear this time. There’s no way around it. I can’t go over or under it. I am being forced to go through it. I’ve been diagnosed with a Cholesteatoma. If you see the #cholestatoma or #cholesteatomasucks on Instagram, it looks like a horror movie. I’m not kidding! It’s really terrifying and people get these horrible skull base surgeries. Facial nerves, worsening deafness and brains are involved.

I found out that I have to have my hair shaved on the right side above my ear. My mastoid bone is affected; as are the 3 bones needed for any hearing. My skull will be drilled and after a 3-4+ hour surgery and more pain on top of my full body RSD/CRPS & other high pain illnesses; it has a 50% chance of coming back!

Anyways, I’ll write another post after I process what will happen tomorrow morning 6-10-19. I’m seeing a skull base/neuro/ear surgeon at 8:30 am tomorrow/Monday morning. I’ll get my questions answered, I hope? Will he be kind and compassionate? Will he help my post-op pain?

I saw my pain Dr. this past Thursday. I also saw my GP this week. The GP was so kind and first time ever, she gave me a hug. My pain Dr has turned from Dr Jekyll to Mr. Hyde over the past year. I’ve never failed a drug test or run out of meds early! I’ve never done anything wrong, yet he’s treated me less than human now for months! Before he’d even accept me as a new patient; he ordered me to stop taking my “quick acting” pain medication. It was something I’d been taking for 13 years (*my former Dr. of 12 years had prescribed it, but then one day he just vanished. That’s when I was forced to find a new Dr.).

In July 2018; he told me he was stopping my long acting pain medication… “that day”! No tapering just stopping it! I did not cry or get upset but I asked “why”? He told me “it’s illegal now and if I help you, I won’t be able to help all of those other people “!

I got him to listen a tiny bit because I reminded him of my stroke and heart attack in the past. He decided to give me one more month. He then said in a nasty tone that he was doing that “to get me psychologically ready”! Really?? It has zero to do with my psychological status and everything to do with high impact chronic pain. Of course he “covered himself” by offering me a different, long acting medication that I cannot take because of issues with Gastroparesis & not being able to metabolize a long acting oral medication. My GI Dr wrote him a letter & told him just that! The pain doctor just said, “This is bullshit! His medical license isn’t any better than mine! If he wants you to have that pain medication, let him prescribe it”! Well, of course He’s a GI doctor and he can’t!

I had my other physicians telling me that “it was unethical for my pain Dr to taper me so quickly!” They said it should have been 10% lowered at a time! But nobody was there to save me and I had to accept it and try my best to move on & keep going. I did it myself when I was told to get off of the quick acting medication. My body physically did not feel well for awhile but I never once craved it or wanted it in my mind- not ever! Then I got off of that long acting medication and once again, I did it myself! You’d think my pain Dr would respect me just a little. But instead, he’s treated me in a demeaning, disrespectful manner ever since last year in March of 2018.

I told my pain doctor that I’m going to have to have this really scary skull surgery soon. That I’m seeing a neuro/skull base/ear surgeon. He was so cold, uncaring & horrible that I truly cannot believe he’s a physician! He told me that I shouldn’t behave like I’m “too afraid” or the surgeon may refuse to take my case! That’s insane if you ask me! What high impact chronic pain patient, headed for hair shaving, painful head surgery wouldn’t be afraid? I’m literally frozen with fear inside! But I’m strong, resilient and I’ve been a survivor through childhood abuse, horrible teen years with my kids, abusive marriages and a catastrophic car accident. Since the car accident, there have been 9 surgeries, 2 pacemakers and several metal screws and implants embedded into my body.

I can do this! Right? Can I do this? Do I have a choice? What did I do that’s so terrible in my life? I have tried my best to be a good person & to help others. I’ve been a Chemo-angel since 2005. I’ve written countless letters, made numerous videos and I’ve met with & spoken to legislators regarding this fake opioid crisis! This horrible and torturous pain crisis that’s killing innocent people everywhere.

Now comes the big question, what happens with my post-op pain care? My pain Dr told me if he was my anesthesiologist, he wouldn’t give after care post-op meds because of “risk for complications”! Gosh… I’ll bet if it was his skull being drilled, he’d be asking for some pain relief medication? He acted like I was getting a hangnail removed! Anyone else who I’ve told, says “oh my goodness, that sounds scary!”

So, my friends, here we are on the eve prior to the appointment when I’ll get all of my questions answered, I hope! What do I ask? How do I ask it? Will I be judged? Will I be too complicated and will he “run”? Will he really not help me just because I’m afraid? I’m not acting out hysterically. I’m not crying in front of the Drs. But I’m deeply scared and I’m having horror flick, bloody, stabbing nightmares! I don’t even know the surgery date as if this post. But I’m pretty sure I’ll know by the time most of you read this.

I promise to let you know when it will happen. If anything happens to me, please don’t forget me, OK? I love so many of you. I’ve seen so many of my friends in pain pass away over the past few years…it’s sad and I miss them a lot (Connie, Cyndi “Maw”, Theresa, Gwen Barbara, and Dawn Anderson most recently).

I’m not being morbid, I promise I’m just afraid. I feel less strong as I get older now. I’m 57 years old and was just looking forward to enjoying retirement with my soul-mate; my husband. He retired last June and we’ve had one thing after another come up. I’d really like to take a breath and enjoy some period of time in my life, for a change. We have 4 darling grandchildren. I just want to hug them, love them and enjoy them as much as possible. Will I ever get to do that now?

Oh…. & last but not least, I told my father about this upcoming surgery. I told him that “I wanted my mom more than ever right now” (she died in 2002). He told me that through her cancer etc., there were many times she “needed things“(he was telling me that I wasn’t there for her)! Well, I’ll just share with you all that I tried prior to my catastrophic car accident, to be there for her. I showed up at the hospital even after being told “she didn’t want me there”. I got there and I was told to leave. I was the only person allowed by the nurses, to sit with her in PRE-Op for 2 hours. We had 2 hours of alone time and it was once in my life that we got along & she wanted me around, it seemed? It was very nice, actually. But then the entire duration of the surgery, I was bullied, mocked, disrespected and literally treated like scum under a sink, by my Aunt, my 2 brothers and my dad.

Please pray for me so that I can be strong like I used to be and like I usually am. I need strength and . I’m terribly frightened tonight as my fate lies in the hands of a stranger that I will meet in 7 hours or so. I have heard & seen many horror stories of pain patients like me, being denied proper post-Op pain management. That fear is probably my biggest fear of all, or in the top 3!

Oh yes, I almost forgot to tell you what my Pain Doc said before I left his office on Thursday. He told me he was “OK with me getting the 3 days of post operative pain control from the surgeon”. He told me to “not accept the post-op meds if they just give me Tylenol with codeine, because that would be like a baby aspirin for me”!

In 2013, I had a full pectoral rebuild and new pacemaker. My cardiologist was wonderful to me! Things are so different now! Im feeling like the powers that be, the government just want persons like me to be gone and out of the way. But I’m still a human being. I want to live. I want to travel even a little. I want to be a grandmother.

I promise to write a quick post as soon as I process and know what’s happening & when the surgery will be.

Thank you in advance, for any and all prayers, positive thoughts & energy sent my way.

As I await my upcoming appointment I would love to be able to sleep. But when I’m really afraid, my GI tract takes over. It’s as though I’m on “auto pilot”. I get overwhelming stomach nausea and flu-like symptoms. THATS how fearful I am feeling. I’ve tried to control it but it’s a combination of PTSD, Dysautonomia & a highly over active “fight or flight response’.

In conclusion, I have a final request: Now is NOT the time to tell me a horror stories regarding any of your past head, skull or brain surgeries. When I recover, I promise…..then I will be glad to listen, help and share etc. Also, it’s such a shame in these days of crazy & draconian policies, that we all have fear instead of trust in the entire “system”.

Sending you love and light!

Do No Harm?


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

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

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

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

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

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

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

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

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

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

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

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

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

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

Preamble

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

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

S.O.S……HELP US!!!!

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~
DISCLAIMER: The contentI is not intended to be a substitute for professional medical advice, diagnosis, or treatment. We do not recommend the self-management of health problems. We can not and do not give you medical advice. The information in this e mail should not be considered complete. Information obtained in this e mail is not exhaustive and does not cover all diseases, ailments, physical conditions or their treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read in this e mail. If you think you may have a medical emergency, call your doctor or 911 immediately. I do not represent to be an authority but I’m just helping pass information from other organizations, advocates and or websites.

The Nightmares of Pain Refugees


Hello Luvs,

I was deeply touched by 2 stories that I’m about to share with you! I’d like to personally say “thank you” to Sheri Owen & Maria Higgenbothem. They are the 1st and then the 2nd chronic pain patients in the video below. I want to thank them for their bravery and their candidness.

Sheri had a level-7, spinal fusion and did not receive any pain care in the hospital after her surgery; outside of the normal regimen that she’s been on for years at home.

Secondly, we have Maria Higinbotham, who went on “Nightly news with Lester Holt and Kate Snow. What’s happening to the Chronic Pain community is torturous and wrong! It’s inhumane and I would’ve never thought this would be happening in the United States of America in 2019. It’s almost like the old practice of eugenics. As if they want us to be gone? So that we’re not a burden on society anymore? This is so morally wrong! Please go to http://www.Videoyourpain.com.

Share your pain story with our legislators, politicians, government, doctors, and pharmacists. Let’s share these painful stories with the world and command that this torture be stopped!

I’ve put the two videos together for your convenience and to CC for the Deaf and Hard of Hearing communities/audiences.

Also, I’d like to add that there are several advocates & groups who trying so hard to do all that they can to help the pain community! I thank you all from the bottom of my heart.

Here’s the link to the original “Nightly News” piece on NBC. (Lastly, there are two news media outlets that are listening to us. Fox News and NBC now have their ears and attention turned to the pain community. Let’s tell them everything that’s happening. Talk to Lester Holt, Kate Snow at NBC & Greg Gutfeld at Fox News. Go to Twitter and find them by putting their name in the search bar. Talk to them! Tell everyone you’re story of under treated and/or untreated pain. They are now listening and we need their help and their voices!

I’d like to say a special “thank you” to David Weiland for posting the video in CIAAG Facebook group.

Here’s the Link to the Facebook Page for “Nightly News” with Lester- NBC Holt

This is the “Chronic Illness & Awareness Advocacy Group (CIAAG) and Non-Profit .org 501(c)(3), Founded & run by Lauren DeLuca & Jayne Flanders: Here’s the link to “CIAAG” Chronic illness awareness and advocacy group on Facebook

Here is the online link to the CIAAG website at www.ciaag.net

Here also are the links to listen to Dr Kline, MD, at Jonelle Elgaway’s Show on Conspiracies Against Wellness Network (CAW): You Tube page for CAW

Here are the links to the C-50 states group page run by Valorie Hawk: Link to Coalition of State Leaders Group C-50

Please everyone try your best to come together and let’s fix this problem! Because it’s a huge problem, a national emergency and a humanitarian crisis.

Here are two more links to a couple of great videos about #1: several pain patients stories of torture: The Link to “Fight for Our Lives”, a short Video that I made regarding this opioid hysteria & untreated pain crisis and #2 is a video about Suboxone. Link to my video, ”Pain, Politics & Suboxone” (It’s a good drug if you’re an addict but has a very low analgesic effect on chronic pain. Not a good choice for persons living with chronic pain illnesses)

Thank you for reading and please share!

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


Hello Luvs,

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

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

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

Don’t be afraid of opioids


There is a gene called “addiction” that some people are born with and others are not. This gene can cause a human being to become an opioid addict. It is not the medication that causes addiction. The medication is just a tool, that if used improperly can become deadly. But again, the medication is an inanimate object or a tool! Similarly a gun is an inaminate object; but when people use it in the wrong way, it can kill!!  Therefore, people should not be afraid of Opioids any more than they should fear Insulin if they are Diabetic. When used responsibly and properly, as the high majority of chronic pain patients do; opioids can give back lives and save families. Just the same way as a gun can save lives and families, when used properly and for specific reasons. The idea that those opposed to opioids for chronic pain need to understand is that

  1. No one will force them to take opioids, so they should stop trying to force a ban on opioids for chronic pain patients.
  2. Opioids don’t “kill people”. They are only a cause of death if they are taken incorrectly (as with most medications) or if they are used inappropriately.
  3. Chronic pain patients are not addicted to their opioid pain medications. They may be dependent or tolerant but again, there is no “high” involved. There is no scrambling for a “fix”

I found more interesting information about the confusion surrounding opioids and addiction. If you try to GOOGLE “how many people have died from PRESCRIPTION drug overdose in 2018 or 2017?”, it doesn’t give you a straight answer! But if you go to this article written by Josh Bloom Who Is Telling The Truth About Prescription Opioid Deaths? DEA? CDC? Neither?  It becomes much more clear what is happening, sort of?

Let me explain in a bit more detail. You see, Andrew Kolodny, the “king of detox houses”  has become very rich.  He appears to be greedy for more. This man just cannot tell you enough about how chronic pain patients and drug addics are in the same category. Yes, it’s true and he says those words directly on this video at time spot:  1:37 to 1:54 Washington Post Video: “Dr Andrew Kolodny; opioid crisis “not and abuse crisis, it’s an addiction epidemic” ….therefore, I have surmised (along with many other advocates, that this man is just trying to prey on those who are lost to addiction and those who have lost someone to addiction overdose. But do you realize (I’m guessing he does not or he’s covering it up?) that the opioid deaths are not from prescription opioids! They are from illicit Fentanyl/Carafentanyl from Mexico and China mostly. These are deaths that are from mixing illicit drugs possibly with some opioids and the PROP and CDC etc. are then calling them all “opioid deaths”.

In Josh Bloom’s article above he shows the lies, the outright blatent lies that people are being told by the DEA and others. Read this quote from his article above, dated 11-5-18, “Controlled Prescription Drugs (CPDs)…are still responsible for the most drug-involved overdose deaths and are the second most commonly abused substance in the United States.”  (from the  2018 National Drug Threat Assessment,Drug Enforcement Administration, October 2018) ….but it’s not true…it’s deceiving. Josh Bloom adds that “there was a newly released 164-page report by the DEA manintaing that controlled prescription drugs are killing more Americans than any other drug”.   He concludes that this is either deceiving or just confusing.

You see, other drugs are included in these “death tolls” from Opioids. It’s not just prescription opioids but there are depressants,  stimulants and other drugs responsible as well. They are all being “lumped together”. There is even a CDC chart in his article that shows how they seemingly intentionally misled all of the readers. The chart shows “drug poisoning deaths” and in very very small print it states “The CDC drug poisoning death category medications” was formerly “prescription drugs” but was changed for two reasons: 1) the category includes Over the Counter Drugs…..” So now OTC drugs are added too this mess as well. He also included that “annual deaths from NSAIDS vary widely they are significant:  3,000-16,000 deaths per year.”

Medications for chronic pain illnesses are not “bad” and should not be causing so much turmoil in peoples lives. The PROP and people like Kolodny and his minions, have decided that they are “evil” and so now they are spreading it like wildfire. There are his drug treatment centers and the creators of Suboxone/(Buprenorphrine-Reckitt Benckiser and others who want to “get rich” by hurting the innocent people who are chronically ill. The RBI corp. even went to far as to pull off a shocking scheme to profit off of heroin addicts in 2016. You can read about that in my other article called “About Suboxone, Buprenorphrine and Naloxone” . Andrew Kolodny even made a statement to the effect of how this generation of chronically ill/disabled persons living with chronic pain need to die off, so that the next generation won’t be addicted to opioids for chronic pain. Can you even believe that train of thought? The next generation won’t even have the option to have opioids for chronic pain (*or experience pain relief). This in an attempt to stop addiction and overdoses from occurring. In other words,  let’s just knock off  the elderly, the disabled and the chronically ill; so they won’t be a burden to anyone, is that it? Get rid of all of us so that we won’t suck the system? So our kids won’t know anything about pain control? They will be brainwashed into thinking that mindfulness, acupuncture and grounding can “cure” chronic pain illnesses? Do people really believe that? I do believe that some of the complimentary therapies may alleviate a minimal amount of pain for the short term. But they’re not a long term answer for chronic pain.  I know of one U.S.A. Pain organization that really “pushes” the complimentary therapies. Consequently they have actually abandoned a large number of the pain community who rely (*or did rely) on opioid medication therapy for pain control. Where are the human rights groups and other organizations who have the power to affect a positive change for the pain community? Why hasn’t anyone physically helped to change the misdirected concocted fear of opioids?  I’d truly like to have an answer for these questions? It’s hard to believe that those who blindly play “Follow the Leader” to the likes of Andrew Kolodny, just want chronic pain patients to “go away”? But as I write this article, there are more states petitioning to become “right to die” or assisted suicide states.  It is already legal in:  Washington DC, California, Oregon, Colorado, Vermont, Hawaii & Washington (still being disputed in Montana). Are we really 100% useless and disposable, like garbage to be thrown away?

Thats a scary thought to ponder! There are people such as Andrew Kolodny and Organizations such as the CDC, DEA and PROP, who would rather that I die than stay here with my husband, children and grandchildren for as long as humanly possible? All I need to be able to do is to take a pill a few times a day or wear a patch and I can live some semblance of a life outside of my bed or the recliner that I now live in for the best part of most days now. The Opioids do not make us “high”. I’ve never been “high” and all they did was take the edge off of a whole lot of pain; due to a long list of high pain chronic illnesses. Most of us, who are living with chronic pain, just want to live some kind of life. Don’t we have that right, just as others without pain do? Many of us were victims of accidents or crimes or just plain unlucky. Why do they want to make our life unbearable? Or even worse yet, why do they want us dead? Is this Eugenics coming back from the early 1900’s?