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 hopefully, there of 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

Inhumane Treatment Of Pain Patients In USA


I opened up My friends blog today (“Pharmacist Steve”). It is Steve Ariens Blog; and I saw a story of torture. There is torture going on in America! I’m seeing it every day now on the Internet! More & more chronic pain patients are being treated like common criminals! This is despicable! My God, are we living in North Korea, Afghanistan or in some 3rd world country (whos people , by the way; don’t deserve this kind of treatment any more than we don’t!!)?

How can the news media @Foxnews.com, @CNN, @MSNBC and all of the rest, be so one sided? Please, I implore you @POTUS, @GovChristie @PetersforMichigan (Senator Gary Peters), @NYGovCuomo (Governor Andrew Cuomo), @onetoughnerd (Governor Rick Snyder of MI). I implore you to think of the forgotten legitimate chronic pain patients. People are now living with daily chronic pain and receiving no treatment at all. They being totally forgotten & considered collateral damage of this “fake war on drugs” ! It’s a war against the chronic pain community; because they’re the ones who are dying. The pain community is stuck with zero semblance of a life as all of this is crashing down around them/us! The posted video is not just sad, it’s torturous to listen to. It’s terrible to watch. But it’s true and it’s happening all over the United States Of America! This is a story about a young mother, wife and daughter; who’s going through sheer bloody hell in Albany New York Trauma Center!

“Amy” Amy’s story of Human Torture in a NY hospital! is a young woman who just went through a painful stomach surgery and her stomach ruptured as well! The contents are therefore spreading throughout her body inside and this causes not only sepsis, but horrible excruciating pain! My husband went through it years ago, but they gave him a Morphine pump while in the hospital for several days following surgery. He was given pain relief, as any HUMAN BEING or any living, breathing animal should have!!

This is torturous and despicable treatment of anyone in a hospital, or any patient care facility; let alone, following a stomach surgery! How can the Albany Medical Center in Albany, New York, allow their patient to be treated in such an inhumane manner??? The behavior of the nurses who pledge also, to “care for the sick” and to “do no harm”; is unforgivable! This sort of treatment to other human beings deserves termination. Those so called patient care employees need to be fired and they should never be allowed to not care for another patient! This woman, who has a name, a face, a husband & a family; is living through hell!

You know what though? This is entirely preventable! She is not a prisoner of War! This is a young woman who’d much prefer to have a “normal” life! This young woman has a name, and that name is “AMY”! She has a young child and a husband. I’m guessing that her husband had to leave her to go home and take care of their little one! He had to do that and he thought he’d left his wife in the care of a reputable hospital facility!! Obviously, he was mistaken and that’s really sad!

What if Amy was unable to show us this video? What if she was incapacitated and couldn’t tell anyone what’s happening to her? Please share this video and Amy’s story. Write to your legislators and put a name and a face to all of our stories. Nothing can change if we cannot be brave and do something to help ourselves and to help Amy!

Our government leaders, the news media agencies and society need to as many faces and hear as many stories as possible about us! The chronic pain community being left behind and treated as though we are just collateral damage in the war on drugs! This has taken a turn for the worse. It’s gone from a “war” against illicit drugs to a war against the legitimate chronic pain patients. We will lose & continue to lose if not for people being brave like “Amy”.

Please speak out and tell everyone your story and the stories like this one! Get the word out about how chronic pain patients are not drug addicts. We are not addicted at all! Ask them if they can remember a time when they had lived through their worst pain imaginable? Then ask them to think about that pain never ceasing! Tell them this is what it’s like for us, for you!

Please pass this story around. Know that I received Amy’s video & story from Pharmacist Steve Arians Blog, at: PharmacistSteve.com….. It is posted in several places on Facebook. He asked if we could “please make this video go viral”?

Thank you for your help! Please…. let’s all help Amy & all of the other “Amy’s”! Thank you Steve Ariens too!

Gaslighting: How A Flicker Of Self-Doubt Warps Our Response To Sexual Harassment and pain 


I was so touched by this email that I received from my friend and colleague, Dr. Mark Ibsen, M.D.. I wanted to re-post this here in my blog, because I thought you would enjoy reading it.

**This is a guest blog post written by Dr Mark Ibsen MD***(He’s referring to this article: https://www.npr.org/2017/11/25/565729334/gaslighting-how-a-flicker-of-self-doubt-warps-our-response-to-sexual-harassment)

********

When I read this,

I could see how pain patients are often gaslighted

Out of their story, their reality

By the domination structure.

Not always male ( think Jayne Ballentyne)

But

Very similar to the harms associated with

Sexual harassment/abuse that is so currently in our national focus.

Whether male or female

Pain makes us doubt our own reality.

This is what makes it such a terrorist.

IMHO

Can we piggy back into the abuse conversation?

Can we make the case that those with arachnoiditis, for example

Were harmed by needle jockeys

Then

Dealt with dismissively ( no one will believe you)

Then

Cowed into submission by being threatened with loss of their medication?

Or

Cancer patients who survive,

Yet can’t get pain relief for their neuropathy,

And get the message:they should  be grateful to be alive…

Or

Wounded warriors who return from Iraq or Afghanistan with

Severe injuries and ptsd

Who must reinvent their entire persona?

Maybe there’s something useful in being with this issue in a new way…

https://www.npr.org/2017/11/25/565729334/gaslighting-how-a-flicker-of-self-doubt-warps-our-response-to-sexual-harassment

Or any kind of harassment.

I’ve been gaslighting myself for years in response to the attack on my practice by

The Montana BOME,

Along with the ptsd from hearings where my

Personality was attacked

My integrity impugned

And

My mental health repeatedly called into question.

Of course the financial disaster of

Loss of my business

Medical costs

Legal wrangling

Has been great,

But the greatest impact has been on my confidence

Faith

Optimism

And

Open hearted empathy.

Yet,

Overcoming these self doubts,

While a daily regimen

Has taught me to be more authentic

Has shown me that being Raw upgrades my intuition and healing skill set,

Making a wider range of emotional states available to me, as well as the opportunity to transform these states.

So- yes Pain IS an F/N terrorist.

And

While I have yet to develop gratitude for

Mike Fanning and the Board

Sarah Damm

Dea agents Addis and Tuss

Pharmacists who refuse to follow the CSA and refuse to fill my Rx

And

Others who ripped me off when I was reeling,

I also

Have learned the validity of Winston Churchill’s statement from WWI:

” nothing so enlivens the soul as to be shot at without result”

It took me 4 days of the Thanksgiving holiday to get to this place. Thanks to friends

Community

Therapy

And

Alanon

And Candy

Be well

Mark Ibsen MD

Helena Mt.

Withdrawals And One Week Fentanyl Lollipop Free !!


IMG_3282image20140726-114710-42430084.jpg

Hello Luvs,

Wow…One week has passed….and I have been free of the Fentanyl Lollipops for 7 days now!

I would say that growing up in an abusive home was horrendous. Being robbed at gunpoint at the age of 11 years; in a shoe store with my family, was just terrifying. I also think that  getting married, being abused and getting remarried all the while being abused even worse, was pretty challenging. I didn’t know what “challenging” was though, until I had to flee the marital home with my two baby girls; along with help from the domestic violence shelters. My little girls  were only 3 and 5 1/2 and I was 30 years old. Later I was diagnosed with PTSD and “Battered Woman’s Syndrome” and found some solace in trusted Psychologist whom I still know to this day. I had felt that battling Anorexia & depression on and off since the age of 17 until I cured myself following a horrible motor vehicle accident in 2002; was brave and courageous. Having gone through Acute renal failure, being robbed again in 2013 and being involved in 2 Motor vehicle accidents, through no fault of my own, I thought I didn’t exactly have such an “easy” life. The second MVA in 2002, I suffered numerous injuries and multiple surgeries; including several pieces of hardware placed in a few different parts of my body. I’m on my second pacemaker, the first being “a piece of cake”. Meaning that the second pacemaker surgery in 2013, did not go quite as planned. After getting into my chest, the Neuro-Cardiologist found out that the 1st pacemaker had worn a hole right through my pectoral muscle. Then not only did I need a new pacemaker, but the 45 minute to an hour surgery turned into a 3 hour ordeal in which my whole left pectoral muscle had to be rebuilt. The team was smart and did research on RSD/CRPS, a Neuro-autoimmune disease that I ended up getting after my 7th surgery.  It was the surgery on my right foot in 2007, in which the horribly painful nerve disease started. It spread and it spread until it went systemic following that major open surgery in 2013. I even endured a CVA and a mild heart attack in between the 10 surgeries following that MVA in 2002. I suffer from an MTBI (mild traumatic brain injury) and went through 3 years of TBI rehabilitation to learn how to cope with:  not being able to cook when nobody is home (because I may leave burners on and hurt my family or myself), not being able to comprehend what I read anymore after having been a College graduate with a 3.9 GPA! I had to learn how to live with leg braces, hearing aids, special prism glasses, balance issues, much less concentration capabilities and just about zero short term memory!  The worst of these being the chronic nerve pain and all of the pain following those years and still to this day.

I went to a pain Dr. for 3 years and he did everything from epidural nerve blocks to trigger point injections and biofeedback along with pain Psychology appointments. I was so happy when I read the notes from the pain Psychologist’s because they wrote that I was not an “addictive personality”. I never drank, smoked, did any drugs….prescription or otherwise! I was one of those “good girls” who had always tried to be “teachers pet” and get a 4.0 GPA and still try to get “extra credit”. Of course I’m a “type A” personality person who likes to do things the right way the first time if at all possible. I always did my best at everything I endeavored. I made alot of mistakes but always came back and tried again, while pulling up myself by the “bootstraps”.

The chronic intractable pain that has gone along with all of my injuries and surgeries since 2002 and then the diagnosis of CRPS in 2007; and later the shock of getting the “full body/systemic CRPS” has been traumatic to say the least. I was always very cooperative and followed whatever the Dr’s told me to do. I trusted again and again and again; when most people would’ve given up long ago, I just kept believing in the “goodness” of people or at least trying to find some good in all people. If you’ve been following along at all, you’ll know that I met Dr. Bullach, my GP for 12 years, in 2002 during a hospital stay following that MVA.  I was in there for pain control and met the pain Dr at the same time. I trusted him right away and thought he was a kind and “teddy bear-ish” type of personality.  He told me that I “could trust him” and that “he would be the eye in the middle of my storm”. He said he would help me and cooridinate specialists and take care of all of my medications etc. He told me “not to worry”.  We tried every medication under the sun, it seemed.  Everything either made me deathly ill, very sick or I was allergic to it! By the time we were finished and had found one thing that finally worked for my kind of pain, there was something of a “book” of all the meds that I had tried and which had failed for me.

Finally, I tried the Fentanyl patches and they made me nauseous and really “loopy”. I went ahead and tried them again because I just felt that a patch was so easy and you didn’t have to think about it all the time, many times per day etc. It finally helped to relieve my pain. I had a hospital bed in my home because I couldn’t even get in and out of bed or get any sleep due to the amount of pain I was living with at the time. I had been offered a “pain pump” that they fill with morphine, by the pain Dr. ….but the auto insurance was fighting me so much and I just didn’t have a whole lot of “fight” left at that time. I also already had 2 screws in my right shoulder, a jaw implant and had a pacemaker! I didn’t want anymore “things” put into my body. Especially not something with a catheter that would’ve been stuck into my spine that had multiple herniates and bulging disks, degenerative disk disease and Scoliosis.  Luckily I didn’t get the pain pump because later we found out that I suffer from Hypogammaglobulinemia, a blood disease that means I have an immune deficiency in my IGG, IGA subsets of white blood cells. I could have become paralyzed and could have gotten numerous infections had I allowed that pump to be placed. I made the right decision for me and today I’m so glad that I did.

So I had been in a “pain pump” support group, just to find out information for myself about the pumps and to make friends with the same kind of pain issues that I suffer from. Everyone was so kind and many were knowledgeable. Some of the people mentioned these “pain lollipops”. They said that they helped a lot and very quickly for the terrible nerve pain. I checked in with my GP, Dr. Bullach about them and he started me on them right away. That was in 2005, after I’d finished treatment with the pain Dr.and he’d put me back in the hands of my GP.  He told me that because I didn’t want a pain pump and I was going to go the medication route for my pain, that it’d be better for me to be in the care of my GP. He agreed that Dr. Bullach would prescribe the pain meds. He told me that my Dr. could consult with him at any time and he would help.  He also agreed that it was better for him this way because he was “looked at under a microscope” and didn’t like prescribing pain meds.

These experiences were all difficult, painful, scarey and life altering; but nothing prepared me for what I’ve gone through this past week with the withdrawals from the Fentanyl lollipops.  I’d been prescribed them and had been taking these for the past 10 or 11 years! Time just kept passing and the regimen was working; although I asked many many times over especially the past 3 years to get taken “way down” from the amount I’d been taking of the pain suckers. Dr. Bullach just kept on telling me to “trust him” and that he “was the eye in the middle of my storm”.  He told me that he’d “gotten me out of that hospital bed in my home”!  He reminded me that I was able to at least get out and do a little bit more than I had been before the lollipops. So I trusted him; though I still continued to ask him to slowly take me down because I felt that I was falling so often (6 times in 2014 and 6 concussions!!!) and though I have balance issues, I thought in the back of my head that maybe it was partially the fault of the meds? I never even took an Aspirin for headaches in the past, prior to this car accident and the injuries from it. Now I was wearing 2 patches of Fentanyl and taking sometimes approximately up to 20 or + lollipops daily to control my CRPS and the other pain issues. I had even woken a “sleeping monster” in that MVA in 2002! I had been born with “Arnold Chiari I malformation”. It showed up on the MRI after the MVA. It is a congenital defect in which the tonsils at the base of my brain stem get swollen and do not fit correctly into the spinal cord column, causing great pain for some people and others never know they have it! It all depends on many issues and variations. The horrible whiplash being my 2nd one and then the MTBI, “woke up” the sleeping congenital defect. Hence, another horrible pain issue to where I cannot even hold my head up for long periods of time without causing great pain.

So as you’ve probably been reading my past few posts, you know that my GP just abruptly left in December 2014. Without any feeling, caring or the tenderness I’d seen before in his eyes; he just told me he was leaving and that that appointment would be my last one with him. He promised he’d talk to the pain Dr. that knew me. He assured me that my treatment would be and stay the same as it had been because it was working! He promised also to send my records to the pain Dr and to personally talk to him on my behalf. I had received a letter from my health insurance company, stating that they “would no longer pay for the Fentanyl lollipops for pain after March 11, 2015, unless a pain Dr. agreed with Dr. Bullach’s treatment plan.” He told me not to worry about a thing and again to “trust him”. Well, as you know, none of that ever happened and the Dr. who took over for Dr. Bullach’s patients got left with a “mess”. He could not handle the volume of patients on top of his own, especially the amount of “pain patients” that Dr. B. had accumulated!! Luckily for me, I’d been a patient in that office since 1986, and had a history with that other Dr. as well. He reluctantly helped me get the pain lollipops and patches, but was swift to inform me that he was not going to be prescribing the amount that I’d been taking under the other Dr.

I was afraid, but I was motivated. I have been through so much, but it has made me a strong woman and a survivor. I took myself down from 20+ suckers daily down to only 8 in just a couple of months time. I cut my amount of the patches in half as well. I went through some hyperalgesia and some misery, but I did it! I was taking less and less as I was looking for a pain Dr. to help because the other physician in that practice didn’t feel comfortable prescribing the kind of pain meds that I needed to survive now, with all of the pain that I live with on a daily basis.

Finally, I found a nice pain Dr. and luckily I carry my records with me when I go to a new specialist. I had everything in order and I felt “safe” with him right away. He told me to finish up the pack of pain lollipops that I was taking and then  go to sleep on July 12th taking one last sucker. Then I was to wake up on the 13th of July, and never take another Fentanyl lollipop again; after 10 or 11 years of taking them, it was over! I was starting a new pain management regimen and I was fearful, but knew I could do it!  The first day was not so bad until the night time. I did crave the mental picture of having something that my brain associated with immediate pain relief!  I felt nauseous, achy all over and I was so hot, I thought I was going to spontaneously combust!! Then I’d get chills, diarrhea and started to vomit. I felt jittery and anxious and didn’t want to do anything but cry and sleep and lay on the couch! I made a video of how I was feeling at 5:00am on the 2nd day. The second day was more of the same and the third day was the worst! I did manage to go with my husband, daughter,& my 2 granddaughters to an hour or so of the kids “music in the park Wednesdays” Summer program.on the third day.  I returned home sicker than ever afterwards!  Finally, I started researching on forums and “You Tube” etc. I learned that if I took a medication called “Clonadine” aka “Catapress”, it can sometimes help with the withdrawals. I called the GP and within an hour an half, I had the Catapress in my body. It was the first thing that actually took a little bit of the edge off from the withdrawal symptoms.

The pain Dr. didn’t seem to think I’d have too much or too many symptoms because he said we were “faking out my body” by switching to a different BT pain medication….something  more safe and not made for “end of life” and “terminal” patients.with Cancer.  He told me that the pain lollipops were/are dangerous, “very dangerous”. He said that I should never have had them. So I’m not sure why my body still went through horrible withdrawals, maybe because of my many bad pain issues?  But I felt like I just was going to die and really didn’t care if I had, at that point! I’m so lucky that my husband is a teacher and he was home for me. Also, my oldest daughter lives nearby and she was a great help and has been. She even was calling several times daily and was stopping over to bring me some “Gator aide” to help my electrolytes along with my favorite food, “french fries”, to get me to eat something substantial!

Well, today it is one week and I am Fentanyl lollipop free. I’m very proud of myself for doing this without having to go anyplace and get help elsewhere. I was afraid because I had a previous heart attack and stroke and I’d had seizures following the MVA for about 6 months. All of those things can happen when going through withdrawals. I’m so very lucky that these things didn’t happen again. I don’t feel good yet. I feel very tired, heavy and I still have stomach aches and diarrhea, along with nausea and depression on and off. I think I’m over the “hump” or the worst of it. I think I will get just a little bit better each day. It’s going to be very very hard because for over 10 years I had a “quick” relief when I was on an outing or needed quick breakthrough pain relief.I have to retrain my brain and myself to just plan ahead and take what the pain Dr has prescribed for me now, about 45 minutes before I may need it. That’s not going to be easy and the new meds are feeling like they’re ripping out my tummy. People tell me that is the withdrawals and not the meds. I’m willing to see this through and keep on keeping on!

Thank you for allowing me to share my journey with you and I will certainly be keeping you posted. Thank you again…..Also, if you would like to watch my very dark (because it was middle of the night with no lights on and I was crying very much) “You Tube” videos, please email me for the link and I will give it to you. I have them not ‘private” but “unlisted” …so if you have the link from me, you will be able to watch them. There are three videos altogether right now for this experience thus far. Again, my email is: jewelrymkr@aol.com…..g’nite luvs….

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A Christmas Wish


Hello Luvs,

Well, it is the Holiday Season once again.  The tree is trimmed….boy, OH boy is our tree ever “trimmed”!!  We have a 3 yr old kitty cat who thinks that we brought a tree into our house JUST for her to play in!! We actually came downstairs and came home etc…several times and the tree was over on it’s side, after having “crashed” to the floor! We decided to take the the bottom off of the tree and put the top of the tree into the tree stand and put it on top of the end table. So now she can hide under the tree skirt, which is on top of the table and under the tree….LOL…but she doesn’t get into it anymore! I just know she thinks that tree was brought inside just to please her and to give her something to play inside of! Silly Luna kitty!  Anyway, it’s still a beautiful tree, especially when it’s all lit up at night.IMG_3919

So…I’ve been really thinking…..I’ve been thinking about Christmas and the true meaning of this beautiful holiday. I used to get so sad when the people who were “supposed” to be around me during the holidays, were not around  during that time, or any other times. That is a long story for another day…But for today, I want to talk about Christmas Miracles and what I would love for mine to be this year or any time at all. I won’t go into details because the past is the past. But my eldest daughter has been gone for over 9 years now. She left of her own free will.  No one asked her to leave, no one forced her to leave, she just left.  Not a day has gone by that I’ve not thought about her. A holiday has not passed, when I haven’t cried because of missing her. If I could have one Christmas miracle, one holiday wish,  it would be the same Christmas miracle I’ve asked for every year since 2004. I would ask for my daughter to come home, at least in her heart.  She is almost 28 years old and has her own home now. Although I stayed and raised my two daughters literally without any physical, Psychological or emotional help whatsoever;  I pray to see her and I also pray to meet my only granddaughter, who just recently turned one year old, this past November. I didn’t know of the wedding, I never knew of the pregnancy, I never saw the ultrasound appointments, I missed her birth, her first sounds, rolling over, crawling, her first tooth and now I’m sure she’s walking and talking.
When I first learned about my granddaughter, I started a scrapbook. It is a way to keep her in my thoughts and on my mind in a healthy and good way. I’ve kept up a book for both of my daughters as well, since they were born.  I’ve written notes, letters, poems etc. to them both from the day I went into labor and through today. Of course they are older now so I don’t have so much to write anymore, but I still write in it when I find something that I want to share with them.  My friends kept trying to get me to find & look at photos of my new granddaughter. I didn’t want to look because I finally saw a photo of her and then I fell in love, instantly. My “baby” has a baby. Wow….my “miracle” has her own “miracle” now. I started the scrapbook, but it turned into a journal of sorts. I don’t have many photo’s of course and it’s turned into what I call “Letters To Olivia”… I have not done very much, but I’ve started it and have written in it. I “talk” to “Liv” and I tell her about us and her mommy when she was a wee one. I guess I just do it to keep sane. I’ve just lost so much; it’s hard to keep my heart from breaking all over again day after day.
I saw this somewhere and it makes me think of my daughter being a mother now :  “Mothers and daughters are closest when daughters become mothers.” -Author Unknown.  I found these ideas online…they are really several pieces of advice for daughters and I want to share them with you (they are from a woman named BNayden, but I don’t know who she really is, except that she is a mom….like me and……although I don’t usually give too much advice, I thought this was worth reading and sharing:

                                     Advice for Daughters

  1. Listen to your Momma. She will never intentionally steer you in the wrong direction. There may be times you think we don’t have your best interest in mind but we always do.
  2. Don’t be afraid to be yourself. Your family and true friends will accept you for who you are.
  3. Do everything with grace.
  4. Avoid participating in gossip.
  5. Think twice before you post something on the internet.
  6. Learn to cook, clean and be organized for yourself, not for someone else.
  7. Don’t set limits for yourself. Break down boundaries.
  8. You are stronger than what you think.
  9. Read books and watch documentaries.
  10. . There is nothing wrong with a little adventure so don’t be afraid to try new things.
  11. . In anything you do, remember that there is a reaction for every action.
  12. . Be the heroine in your own story. You don’t need a prince to rescue you.
  13. . Don’t dumb yourself down to get attention. There is nothing wrong with being smart. Use your common sense.
  14. . Respect yourself.
  15. . Know who your true friends are. It is okay to let go of people and move on, not everyone is meant to take the next step with you in your journey.
  16. . Set goals for yourself and have a plan but know that not everything goes as planned. Always have a plan B and C.
  17. . Don’t give up on your dreams. Take it one step and one day at a time.
  18. . Travel. Experience the world.
  19. . Know what’s going on in the world and in your local community. Keep up with current events.
  20. . Be confident and believe in yourself.
  21. . Respect nature and the environment, help to take care of it.
  22. . Work hard and seize every opportunity.
  23. . Be kind, compassionate and loyal.
  24. . Not everyone will be on your team. Don’t worry about pleasing them. Keep yourself happy and stick to what you believe in.
  25. . Know your self-worth and don’t let anyone else bring it down or make you feel less worthy.
  26. . Have faith.
  27. . Be courteous and always practice good manners.
  28. . Try your best not to do or say anything you will regret later.
  29. . Be wise when it comes to money. Save for rainy days and for the future. Live within your means.
  30. . Material possessions are not everything.
  31. . You are my princess; find a man that will treat you like his queen and he will be worthy for you to treat him like a king.
  32. . Be as well-educated, well-spoken and well-traveled the best you can.
  33. . Have hobbies, learn to play an instrument, play sports, join clubs and do volunteer work. All of these things will teach you valuable skills and make you a well-rounded person.
  34. . You are going to lose sometimes but you will only fail if you don’t stand back up and try again.
  35. . Be independent.
  36. . Learn to be patient.
  37. . You have a rich heritage. Be proud of it and your culture because it contributes to who you are.
  38. . Realize when to walk away; you can only give so much until you compromise your integrity and happiness.
  39. . Be healthy. Eat well and exercise. Practice good hygiene.
  40. . Be passionate about everything you do and what career you choose. It should not always be about the money especially if you are unhappy.

I don’t know why I liked the advice above, but I thought it was really good, or most of it anyways. I just felt like sharing it …but now I’d like to share My Christmas wish:

….I so badly want my daughter to look up to me, like she had done in the past. I want her to see me with the same eyes that she had seen me with when she was a little girl. A time when I could fix anything and a time when a hug and a kiss and some ice inside of the “boo boo bunny” could fix a multitude of “owie’s”.  I don’t want to go back in time, but move forward yet have her remember what she knew of my heart, who she always knew I was and for her to once again KNOW that I still am that “Momma” who thinks of her every day and still fondly calls her “My Sunshine Girl”.  I want for her to realize that though she thought I could fix anything when she was a little girl, I’m just a person who is imperfect and who makes mistakes just like anyone and everyone does.  I so badly wish for her to know that I never ever did or said anything to intentionally hurt her, not ever. Though I never would hurt a hair on my daughters heads, I’m not perfect and I have my own past hurts, issues and inner “demons” that I fight against; while being a product of a Malignant Narcissistic abusive family……what I’m saying…… I suppose….is that I’m sure I’ve unintentionally  hurt some feelings in the past, but not willfully or with malice in my heart.

I have so much on my mind and in my heart this Christmas time. I am older now and feel at peace more with who I am and who I wish to be. I try to find good in every day and forgive the “little” things, because most daily annoyances are just that…”little things”.  I try to find the good in people that I meet, and not be judgemental.  I forgive those who’ve hurt me, even though the “hurt’s” that have plagued me during my lifetime are unimaginable to some. I’ve had not one, not two but many many Dr.’s and other people who meet me, say that I am a “miracle”. They say that they are so surprised that I’m not “dead or crazy.  I’m not saying that to boast about being some kind of “miracle”…no… but to have you, the reader; know and feel what kind of things I’ve endured. If not for any other reason, than to know that I write from my heart; a broken heart.  A heart that I’ve tried to mend over these years and continue to fill it with only love and kindness. I try not to harbor ill feelings for those who’ve abused me in the past, and they are many. I’ve been hurt by just about every person in life who was supposed to love me. I’ve been starved, poisoned, beaten, broken, punished, molested,raped, cheated on and worst of all taunted and teased, called names and the most hurtful of all is the fact that those who are supposed to love me, get pleasure from my pain. It saddens me when I think about it too much. So I just don’t think about it ….and as much as I can push it away, I do!

Anyways, all of that is in the past…oh wait…no… some of it is still happening. When you have Narcissistic abusers in your life, in your own family; it never ends until you break the ties. That  is something which is so hard to do that not many can do it; not many  stick with it for the long haul. God never said that you had to stay with people who hurt you and/or abuse you. But enough of that talk, this is Christmas and it is the season of goodness, kindness and peace.

I’ve always heard it is the time for miracles. I’ve been waiting so long and every Christmas I pray for my Christmas miracle to come true. I pray all during the year as well. I pray every day and each night. Maybe this will be my year for a true longing wish to come true. All I want for Christmas, Lord….is to have my daughter back in my arms again. I don’t care how old she is….she will always be my baby!  “I love her forever, I like her for always….as long as I’m living my baby she’ll be…”…..Anyways, the day will come that my wish will come true, she will feel again in heart what she once felt ……something I’ve always felt and never lost for her…..a kind of love that is deep and true and a special kind of love between a Mother and her daughter…..

Well…anyways…I hope all of your Christmas wishes come true….whatever language you speak, I hope you speak “Love” and keep it in your heart all year and not just at Christmas time….

Photo Dec 02, 4 46 30 PM

Tears Of Truth…..My Story..


pie chart of causes of traumatic brain injury
pie chart of causes of traumatic brain injury (Photo credit: Wikipedia)

2013-07-01 09.23.57

      I am an Interpreter for the Deaf, that’s what I went to a 4 year university to become!  I worked at the University of  Michigan hospitals as a secretarial “float”.  I  was paged whenever a Deaf person came into the clinics, hospital or E.R. and  I  would go to them to aid communication between the Doctor and patient.  

    Then in 1998 my *(see below)*abusive family got worse when I confronted them!  Depression and anxiety set in, although,  I finally felt safe with my new husband.   I started having Flashbacks and nightmares.  I  was granted  SSDI for CKDII,& PTSD (Chronic Kidney Disease stage II and Post Traumatic Stress Disorder).  I was going to try and go back to work in Fall of 2002, but that plan changed abruptly on Aug 11th, 2002.   A man arguing with his wife, ran through a red light and totaled our van and  my body!   I suffered:  an MTBI *(mild traumatic brain injury) & 3 yrs of TBI *(traumatic brain injury) rehabilitation.  I was horribly injured and in so much pain!  I had been knocked unconscious for about 20-30 minutes.  I was hurt in so many places and weighing only 90 lbs didn’t help me at all!  Both of my knees and both of my shoulders were torn.   My right  biceps tendon tore right off of the bone on my  right side. My right ankle and my right foot were injured.  My ears suffered nerve hearing loss (*I now have 2 hearing aids) and my eyes suffered some nerve damage as well.  Many lower back & neck disks were/are herniated, ruptured and bulging.  As time went on I ended up with two frozen shoulders.  I went through 8 yrs of Physical therapy, 3 yrs of  TBI rehab, and underwent 9 surgeries; including  2 screws in my left shoulder and an intramuscular pacemaker, twice in 10 years now.  My first one was placed inside of my pectoral muscle because of its vulnerability inside of my chest at such a low weight.  But 10 yrs later they did plastic surgery to rebuild my pectoral muscle because the pacemaker had worn right through the muscle wall!   

   Sadly, in 2004, my 18 yr old daughter left home because of reasons I won’t write here. My heart was literally broken! I had a heart attack one week after Mother’s Day, in 2005.  The cardiologist said that I was “his first case of “Broken Heart Syndrome“…my daughters were my life and I raised them 98% on my own! I had left my ex-husband, the father of my two girls, after an 8 year abusive marriage, in which he also cheated on me  several times.  He was an abusive Sheriff’s Deputy who was fired for “hurting another girl besides me!” He was given a jury trial and found “Guilty” of “Obscene conduct” and “Indecent exposure” (which were truly lesser charges than what actually happened!) . His punishment ended up being that he can never be in law enforcement again.  He also couldn’t see our two daughters, then 31/2 & 6 years old, without a supervisor approved by the court. He was abusive towards me and to our Rottweiler, ‘Bully boy”. He pushed down our then 3 year old little girl, because she “wasn’t hurrying fast enough”.  He pounded my oldest daughter on the top of her head when she was in tears over him kicking our family dog in the head and neck, as she cried “daddy don’t hurt Bully Boy”! While hitting her on top of her head, he said “I’m the dad and I can do whatever I want”!! He left his service revolver out on top of the window sill and on the back of the toilet seat! When my youngest was 2 years old, she brought it to me saying “Mommy, what is this for?” Needless to say, they took his guns away from him and he was punished after that incident and then swearing to “shoot all of us and himself!” There’s so much more…too much to write here except for one thing that sticks out in my mind so sharply.  During the time when my ex-husband could still see our girls, before he was convicted and found “Guilty” and only allowed supervised visitation; he had taken them for the weekend. They came home and told me that “daddy had a girl in his bed”. They told me that my youngest who was then 3 years old, had vomited in the bed that they shared in the apartment he lived in, that was attached to his parents house. Our oldest, who was just 5 1/2 yrs old, went upstairs crying to him and knocking on his bedroom door. She was crying and saying that her little sister had thrown up in their bed. He told her to “shut up and leave him alone”!  She was 5 years old and had to try to take care of her sick 3-year-old sister, while trying to clean up vomit on her sister and the bed !  Needless to say, that was their last visit with him unsupervised. We had to go to the Domestic violence shelter and we had interviews with Child and Family Services. They sided with me and recommended “supervised visitation and anger management classes”.  The judge agreed with their recommendation. He was embarrassed and angry, therefore he moved 1,000 miles away barely ever seeing his daughters. He was angry and wanted “revenge” on me for “taking away his kids”.  I did not do that though;  he did it to himself and then the judge ordered it!

Atrial fibrillation
Atrial fibrillation (Photo credit: Wikipedia)

  I was never ordered to do anything but I still sent him photos, invited him to public school and other events in their lives and his parents as well. I took the girls to visit his parents who lived about an hour from us, here in Michigan at least once every month and each Christmas day they went to see them from noon until 7:00pm! I even drove them to and from their home which was an hours drive from our apartment.

   Later,  in 2006, after my  heart attack, I acquired “Atrial Fibrillation” *(Atrial fibrillation is when the heart muscle quivers and shakes, spitting out little blood balls or clots which can cause strokes) and therefore ended up suffering  a CVA *(cerebellar Vascular accident) or “stroke” from the A-Fib! I had already been on blood thinners but apparently I needed a bigger dose!     It’s been since 2004, & my oldest daughter has never wanted to see me or speak to me.  In 2007, I texted her and said “I Love you and I’m thinking about you.” She called me back and asked me to meet her and we did. We met twice and had lunch, but it did not work out very well. Another time she texted my cell phone and it was 2008 or so….she texted “Suzanne, why do you think people care about you?  THEY DON’T!!”….I fell apart once again.      

    I recently had my 9th surgery this year in February 2013….a new pacemaker and a rebuild of my Pectoral muscle!  Then on August,the 5th, 2013, I’ll be having my 10th surgery, oral surgery!  I found out that my oldest daughter got married in Oct, 2009 and to the same boy she wanted to sleepover night with while still in High school.   That was the episode that led up to her leaving home, because I said “No” (that she could not have my permission to sleep over at a boy’s house while still in High School)! I also found out that I  am a Grandmother to a little girl born in Nov -2012! Her name is Olivia, and as of this month (July 2013), she is now almost 7 months old. Again….still…I am heart-broken!  All that I’ve ever wanted is to be a Momma & a Grandmother!  I was/am a good mom..my ex-husband ran away “to find himself” !  But I’m the one who stayed and raised our daughters alone.

    I’ve lost so much…but I thank God every day for what I do have : my youngest daughter, now 241/2 & living in her own appt. since August 2012!!! She graduated last Summer (’12),with her Master’s degree in”Library & Information Sciences”.  She has her own apartment. She also has a wonderful Academic Librarian job with a tenure track etc. I have had the most wonderful husband, for the past 16 years! He’s the love of my life and my soul-mate!!  He has been an elementary school teacher for 35 years and he is the best teacher and the best husband ever!

    This is my story..PTSD that continues and never seems to end because my father and brothers  still treat me in an abusive manner.   Add that  I’m in chronic intractable pain 24/7 since that MVA in 2002!  I acquired “full body” RSD/CRPS  a painful progressive Neuro-autoimmune disease, which causes burning nerve pain similar to the feeling of being “on fire”!  I have OA and 2 Rheumatologist’s have said that I have RA  *(one of them gave me an injection kit for “Humira” and wanted me to start taking injections.  Luckily I didn’t ever start taking them because I found out that I have an IGA deficiency and that RSD/CRPS is an autoimmune disease, therefore that medication could have made me much worse off!), but my PCP and I aren’t quite sure, or really don’t think so at this point! I have Myofascial Pain syndrome, Fibromyalgia (which I’ve denied for several years, but am finally coming to terms with it).  I have Dysautonomia which is  my Autonomic nervous system dysfunction or failure.  It means that all of those body systems and things that our bodies do without thinking about it, don’t work for me.  This includes: body temperature, respiration, blood pressure, digestion, sleep disturbances, memory problems, heart arrythmia’s and more.  My brain stopped telling my heart what to do, which is part of it also and one of the reasons for me needing a pacemaker!  I also suffer from POTS (Postural Orthostatic Tachycardia Syndrome) and NCS (Neuro-Cardiogenic Syncope), CKDII (chronic kidney disease stage II, due to tubular interstitial nephritis), Hypogammaglobulinemia ( an Immune deficiency), Sick Sinus Syndrome, Coronary Spasms, Atrial Fibrillation, MVP, TVP, (Mitral valve prolapse /tricuspid valve prolapse), Chondromalacia Patella and Patella Femoral pain syndrome, Asthma and  other diagnosis’ but just too much to keep writing for now.  

   All I pray for daily is that my oldest daughter will come back to me and to us.  I pray that one day I will get to hold and see my granddaughter, because I already love her! I am blessed with a wonderful and loving husband. Also, I have God who is my Lord and Savior and it’s because of his love that I can never give up.

**(from above…In another post, I will explain more about my life and growing up in an abusive and highly Narcissistic/abusive home, where I was starved, poisoned, weighed weekly and given punishment/reward dependent upon my weight.  I was also abused in just about every possible way by almost  everyone who was supposed to love me; and those who I was supposed to be able to trust!)

2013-06-08 02.35.10 2013-06-08 02.31.41 MY RSD/CRPSII 2013-07-01 08.42.51 2013-07-01 08.42.10

2013-06-25 02.19.13 2013-06-26 11.12.25