All For One, None For All


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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Tides Turning For Opioid Patients?


Hello Luvs,

This PDF was sent to me by my friend & fellow advocate, David Cole. I wanted to find a good way to share it with everyone. Please let me know if you have any problems at all with sharing it.

Thank you and I wish each of you peace, Hope, love & Light. Let’s hope that the people in Washington state will help to share their awareness with the other 49 states. I truly pray that someone who is capable and willing to help the chronic intractable & high impact pain community reads this File. I hope that someone will help us. Please start to once again take care of the sick, disabled and those living with horrible daily pain.

Please read this file about the tide starting to turn in the state of Washington for the pain community. Our voices are finally being heard. Share this everywhere far and wide with News Media & On Social Media! We deserve to live some semblance of a life; same as everyone else. We are not “less than” other people who haven’t gone through tragedy or illness. We are worth it!

https://www.dropbox.com/s/tibqrx8clichs39/Opioid-PatientsINS2019-02.pdf?dl=0

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


Hello Luvs,

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

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

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

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.

International Stakeholder Community of Pain Experts and Leaders Call for an Urgent Action on Forced Opioid Tapering | Pain Medicine |Oxford Academic


The aforementioned article proves that there may be hope for the chronic pain community.

In 2016, Andrew Kolodny, (who is co-Director of Opioids policy Research at Brandeis University), along with a group of Addiction specialists & others, went behind closed doors to “invent” & then Implement the 2016 CDC Guidelines regarding the use of Opioids. These were Supposed to be just guidelines for primary care doctors. But they rapidly became “the law” in the eyes of the CDC, DEA, National News Media outlets, Pharmacies & our government officials. Today we even have legitimate, licensed pain management Physicians, heading for the hills! They’re Not following the Hippocratic oath. These physicians are abandoning patients & putting many at high risk, myself included. The way that the chronic pain community has been treated, has been outrageous.

Please feel free to share this article on social media. Print it out and take it with you to your Dr. appointments. Let’s also share it far & wide through the news media channels as well. They’ve been getting it wrong & now need to help change the hysteria & damage that’s been created.

“We, the under signed, stand as a unified community of stakeholders and key opinion leaders deeply concerned about forced opioid tapering in patients receiving lolong-term prescription opioid therapy for chronic pain. This is a large-scale humanitarian issue. Our specific concerns involve:
— Read on academic.oup.com/painmedicine/advance-article/doi/10.1093/pm/pny228/5218985

Making Peace With My Pain?


*********PLEASE NOTE THAT THIS IS MY ORIGINAL ARTICLE!!! WHAT GOT POSTED IN “NTL PAIN REPORT” TODAY (9-22-18), WAS EDITED AND CHANGED INTO SOMETHING ELSE. I’M NOT A WHINER NOR AM I WEAK! I HAVE A VOICE & I’M VERY STRONG!! I SENT IN SOMETHING WRITTEN FROM MY HEART & SOUL. IT’S BEEN CHANGED INTO SOMETHING UNRECOGNIZABLE! THOSE ARE NOT MY WORDS OR THOUGHTS AT ALL. THIS IS MY ORIGINAL ARTICLE AND BELOW, YOU CAN READ MY OWN THOUGHTS AND WORDS:

Hello Luvs,

In this time of uncertainty for chronic and/or intractable pain patients please stop telling us to “make peace with our pain”. Until you have walked in my shoes, do not try to dictate what is best for my situation. If you hurt your back momentarily or you have several aches and pains, then by all means, use “mindfulness”, “accept your pain” and then “make peace with it”. I don’t care what you do with it honestly, but stop telling me/us to “make peace” with now, uncontrolled chronic daily pain at a 7/8, knowing that it’s forever. My health decline has continued year after year with increasing medical issues piled on top of the old injuries; going on 16 years now.

Unless you actually live with daily intractable pain, don’t to tell me/us how to manage it. If you’re a writer, motivational speaker or a politician, stop giving advice when you don’t truly understand the nature of living with 8 chronic pain illnesses. If you have one chronic illness and “accepting the pain” or “making peace” with it works for you, then by all means, go for it!

Let me explain for those who don’t really know the person they are preaching to on social media. It’s not always Psychological, hysterical or a history of abuse that causes ongoing pain. Sometimes things just happen that cause a very strong person to live with very high pain. When that pain gets more complicated and worsens as time goes by, and it is forever; that is when acceptance, making peace with your pain, grounding and mindfulness don’t work very well.

I was a very active single mom with two young daughters. I had a career as an Interpreter for the Deaf at a major University hospital and school districts. I taught aerobics and was the jump rope team’s coach at the Elementary school. I visited different schools to share Deaf culture and American sign language. One day a man ran a red light and changed all of that for me. Afterwards, I worked very hard at 3 years in TBI rehab, 9 years of PT/OT, driver rehabilitation and speech therapy. I ended up with 2 hearing aids and prisms in my glasses for a long time. For 3 years I refused opioid medication due to the stigma or “taboo” of taking it. I did Biofeedback and the red line was “off the charts” showing that my pain was very high and I needed some other intervention. I was the woman who graduated with honors, never drank or smoked. I was not taking that medication. I worked with a pain Psychologist at a pain clinic. I had several epidural nerve blocks, trigger point injections, cortisone injections and other medications(*most either made me violently ill or I was allergic). I endured 8+ surgeries, including 2 screws and a pacemaker with a cardio messenger box next to my bed. They told me to “trust them” and take the opioid pain medication or I was going to stay in that hospital bed in my home. I finally accepted the fact that just as people with hearing loss need hearing aids and those with vision issues wear glasses and Diabetics take insulin; I needed to take pain medication to give me back my life, or some semblance of a life.

For 13 years, I’ve been as active as I can be. I don’t lay in my bed and wallow or feel sorry for myself. I have been a US Pain Ambassador, on the Board of Directors and even won “U.S. Pain Ambassador of the year 2016”. I’m a patient Leader for WEGO Health, have been on 3 different radio shows and I have been a mentor for newly Diagnosed CRPS patients. I have a popular blog and write for National Pain Report. I’ve done many fundraisers, awareness events and still currently lead several online groups while helping several non-profit groups with whatever they need help doing. I live with several high pain chronic illnesses, including: systemic/full body CRPS, EDS type 4/vascular, Chiari (with migraines), Right Long Thoracic Nerve Neuropathy, Autonomic Neuropathy, R.A., Dysautonomia/POTs, Coronary Spasms (Prinzmetal Angina), Degenerative Disc Disease with multiple herniate and bulging discs, Spinal Stenosis, Chronic erosive Gastritis, Gastroparesis, SIBO and multiple heart issues.

I’m at 25% of of what I was taking for the past 13 years. Two of my specialists wrote letters on my behalf, to my pain Dr.; explaining that with the multiple illnesses that I live with, the patch is and has been proven to be the very best thing that works for my pain. One of my specialist physicians wrote “why break what doesn’t need fixed? She’s been active and doing so well and this could land her inpatient and in declining health”. My pain Dr. said “this is Bullshit, his license is not any better than mine. If he wants you to have the patch then let him prescribe it”.

I continue to be quickly tapered against my will. I’m in my “Lazy Boy” recliner 16-18 hours every day.

This is what my “forever” is looking like now. I went from teaching aerobics, American Sign Language, being the Elementary schools’, Jump Rope Team coach and an active mother and then grandmother, to “living” in a recliner daily. I’m not focusing on the pain, in fact I’ve done everything to not focus on it. I went through 43 hours of labor and then a C-section, twice; while being sent home with Motrin 800 per my own choice. I’m not a “baby”, nor am I an “addict”. In fact I have a letter from the Pain Psychologist, stating that I “do not have an addictive personality”. So stop telling me to plant my feet (with open sores on them, by the way) into the earth to practice “grounding”. Don’t tell me to “make peace with my pain” or accept it; unless or until you have walked one full day in my shoes! If you haven’t experienced pain on these levels, then stop preaching to the choir. I, for one am getting very tired of defending myself and the rest of the pain community on the subject of opioid pain medication therapy. It does work for some of us just as Insulin helps the Diabetic to continue living.

**The Article Ed edited & changed totally & which appeared to be written by an illiterate 5th grader. Is in its entirety at the Ntl pain Report but for your convenience I’ve recopied what Ed Coghlan wrote in place of what I had sent to him:

Making Peace With Pain (by: Ed Coghlan)

Please stop telling me to make peace with my pain.

I can’t right now and haven’t been able to do for many years.

And it’s getting worse.

My health decline has continued year after year with increasing medical issues piled on top of the old injuries; going on 16 years now. If you have daily intractable pain, you know what I’m talking about.

It is not always psychological, hysterical or a history of abuse that causes ongoing pain. Sometimes you just hurt—a lot.

I was once a very active single mom with two young daughters. I had a career as an Interpreter for the Deaf at a major University hospital and school districts. I taught aerobics and was the jump rope team’s coach at the Elementary school. I visited different schools to share Deaf culture and American sign language.

Then a man ran a red light and changed my life. I have endured 8+ surgeries, including 2 screws and a pacemaker with a cardio messenger box next to my bed. They told me to “trust them” and take the opioid pain medication or I was going to stay in that hospital bed in my home. I said ok

For 13 years, I’ve been as active as I can be. I have been active with a national pain advocacy group and I contribute to the National Pain Report and have worked to advance the wants and desires of the millions of people like me—people who suffer from this cruel condition.

This “reduction” in opioid prescribing has hit me hard. I’m taking  about 25% of what I was taking for the past thirteen years. Specialists who treat me have written letters to my pain doctor explaining that with the multiple illnesses I live with, the patch is the best thing for me. My pain doctor, feeling the pressure of the CDC guideline, refused to do it.

Now I’m in a “Lazy Boy” recliner 16 hours a day because I’m being tapered against my will.

Not what I want. Not what I’ve been.

I could tell you much more, but if you’re like me, you know.

It’s not fair.

Suzanne Stewart is a chronic pain patient (and advocate) who lives in Michigan. She is a contributor to the National Pain Report.

***Lastly,

This Bio which is usually on all of my NPR articles, is missing today….. here’s what it normally says:

Suzanne has lived with a Systemic CRPS & several other chronic pain illnesses since a MVA in 2002. Prior to being disabled from chronic pain, she was an Interpreter for the Deaf at a hospital & worked with Deaf children. Since 2005, Suzanne’s been a patient Health advocate, support group leader & Mentor.  She continues doing these things today, but also does public speaking, awareness events and she’s a Writer/blogger & an Ambassador for the U.S. Pain Foundation. The statements and opinions that she provides are her own and should not be taken as the stance, position or viewpoint of the U.S. Pain Foundation. For entertainment she creates advocacy videos & uplifting ASL cover song videos on You tube and she writes in her own blog Tears Of Truth. You can follow her here: TearsofTruth.com

This was my photo + Bio on them”staff columnists” Page under the “Our Team” Tab.

This is the email I rec’d from Ed Coghlan, after I was trying to let him know how upset I was that he “gutted” my (this) article. He added words that I hadn’t written. He changed the powerful message that was in my original story; to one of weakness and whining! Needless to say, I don’t want to write for someone that would call this an “edit”. Then send me an email at 12:05 AM, saying that he was going to publish this article in the morning (6 hours later); without ever allowing me to see the “edits”! I finally asked if I could please see the final copy and about 1:00-1:30 AM, I received the skeleton of my former original article. I begged him not to post it as it was. He’d gone to bed and scheduled it to post at 6:00 am! I was getting all kinds of comments from persons who recognize my writing when they see it and when they don’t! The rest is history!

PS- Btw, he couldn’t get hold of me on Saturday because I have recently been quickly tapered against my will; from my LA/ER pain medication that I’d been taking since 2005. I was in horrible pain from the added emotional strain from my resignation from US Pain Foundation Board of Directors & from USPF. Then the very next day this happened.

My husband called Ed in my place because I’m conscientious and would never just not respond. He told my husband that “he was not comfortable talking with him”! Well he’s also my caregiver and I wasn’t able to speak at that point. It all came tumbling down!