Amy Susan Crohn's Blog, page 6
August 30, 2013
Little Girl Lost
It is two days since I buried my brother. I feel like the lost little girl I wrote about in my book, DYING TO LIVE: Running backwards through cancer, Lupus and chronic illness. But I'm thinking long and hard about the title's pre-fix: DYING TO LIVE.
Because, I guess as we age, many parts of us die - whether they be our actual loved ones or our dreams or parts of our health, we are dying all the time. I turned 53 on Monday. It's a pretty insignificant age yet it will forevermore be burned into my brain due to my brother's death mere days earlier. And, for me, it brings back the question of why I lived through traumatic and near-fatal illness? Why was I chosen to stay in this Earth school when others I loved were not? Most importantly, however, we must accept that constant rejuvenation, growth and miracles accompany this dying journey. We just have to be willing to see and accept them quietly and with grace, or loudly and with gratitude - or both!
I don't talk about this much and not even in my book, but I had a Guardian Angel while I was critically ill. He visited me sometime during my wreck of an emergency tracheotomy, chemotherapy and never-ending hospitalization and his name was Sid. He was tall, blue-eyed with blond curly hair. He would sit by my side, visible only to me, and speak comforting words of encouragement and share my sorrow. Sometimes he would challenge me when I wanted to give up. His favorite three words when I would cry out: "Why me?" were "Why not you?" Months later when I started driving again, he was in the passenger's seat urging me on even through my eyesight was hazy, my confidence was zero and my muscles were weak.
One day he told me it was time for him to leave and I begged him to stay. But with a smile and wink (like Santa) he was off - back to God, I presume as his job with me was done. I looked for him for months - in real live humans. I was sure I would recognize him instantly and be able to walk up to him and thank him. But, of course, he was not of the physical world and I finally accepted I would not see him again until I rose to Heaven when it was my turn.
I hope my brother, Steve, has met Sid and they will become good friends; unless, of course, Sid is still working missions since I do believe God hands out certain job descriptions once you arrive in Heaven. I wonder what my brother's mission will be? I'm sure part of it will be to delight people with his wit and artistic expression. Perhaps he is already comforting someone else singing in his deep baritone voice, soothing with carefully selected words, or just making some ill child laugh.
According to one angelic website: "Usually, the guardian angels are spontaneously manifesting their support and divinely-protective influence when the human being truly needs them, because the mission they have from God, in respect with our being, is of acting like a sublime Providence..."
I believe, but you don't have to. I believe because of personal experience. Before that, I was a staunch non-believer. It takes a lot of time and argument with yourself and others to accept what is clearly not logical but I learned - slowly - that I actually prefer the illogical at times; especially times like these - times when nothing seems to make sense and I am that little girl lost yet again.
I will heal. The vast hole in my chest will fill in slowly and joy will return, most often when good memories of my brother surface. For now, I stay in sorrow and ache all over. It's just the first of many steps to come.
By Stephen Lyon Crohn 2013
Because, I guess as we age, many parts of us die - whether they be our actual loved ones or our dreams or parts of our health, we are dying all the time. I turned 53 on Monday. It's a pretty insignificant age yet it will forevermore be burned into my brain due to my brother's death mere days earlier. And, for me, it brings back the question of why I lived through traumatic and near-fatal illness? Why was I chosen to stay in this Earth school when others I loved were not? Most importantly, however, we must accept that constant rejuvenation, growth and miracles accompany this dying journey. We just have to be willing to see and accept them quietly and with grace, or loudly and with gratitude - or both!
I don't talk about this much and not even in my book, but I had a Guardian Angel while I was critically ill. He visited me sometime during my wreck of an emergency tracheotomy, chemotherapy and never-ending hospitalization and his name was Sid. He was tall, blue-eyed with blond curly hair. He would sit by my side, visible only to me, and speak comforting words of encouragement and share my sorrow. Sometimes he would challenge me when I wanted to give up. His favorite three words when I would cry out: "Why me?" were "Why not you?" Months later when I started driving again, he was in the passenger's seat urging me on even through my eyesight was hazy, my confidence was zero and my muscles were weak.
One day he told me it was time for him to leave and I begged him to stay. But with a smile and wink (like Santa) he was off - back to God, I presume as his job with me was done. I looked for him for months - in real live humans. I was sure I would recognize him instantly and be able to walk up to him and thank him. But, of course, he was not of the physical world and I finally accepted I would not see him again until I rose to Heaven when it was my turn.
I hope my brother, Steve, has met Sid and they will become good friends; unless, of course, Sid is still working missions since I do believe God hands out certain job descriptions once you arrive in Heaven. I wonder what my brother's mission will be? I'm sure part of it will be to delight people with his wit and artistic expression. Perhaps he is already comforting someone else singing in his deep baritone voice, soothing with carefully selected words, or just making some ill child laugh.
According to one angelic website: "Usually, the guardian angels are spontaneously manifesting their support and divinely-protective influence when the human being truly needs them, because the mission they have from God, in respect with our being, is of acting like a sublime Providence..."
I believe, but you don't have to. I believe because of personal experience. Before that, I was a staunch non-believer. It takes a lot of time and argument with yourself and others to accept what is clearly not logical but I learned - slowly - that I actually prefer the illogical at times; especially times like these - times when nothing seems to make sense and I am that little girl lost yet again.
I will heal. The vast hole in my chest will fill in slowly and joy will return, most often when good memories of my brother surface. For now, I stay in sorrow and ache all over. It's just the first of many steps to come.
By Stephen Lyon Crohn 2013
August 25, 2013
Why Do They Die?
I am at a heartbreaking loss for words but writing is my therapy and my solace.
My dear brother, Stephen Lyon Crohn, age 66, died unexpectedly yesterday. He was an incredible painter, photographer, writer, volunteer for a number of worthy causes yet endured a tremendous set of difficult circumstances in his life that ultimately overwhelmed him. I understand, I think. I already miss his incredible humor and unmatched intelligence (Mensa Member).
I write this through salty tears that have been pouring from my unseeing eyes for hours. It's enough to make me sick of myself but I know I must go through the process. Grief is never easy.
What can I say except goodbye? How can I stumble through these next few days honoring his memory, mourning his loss, and still take one practical step in front of the other? I don't really know.
My brother was, at times, my best friend. Although 14 years older than me, he was ever-present, it seemed, and could always make me laugh and we shared a similar sense of wicked humor. We were partners in practical jokes and he was wonderful with my children until the dark clouds overcame him sometime at the turn of the 21st century, a milestone for all us baby boomers. Even though I'm on the tail end of the baby boomer curve, we still shared some hippie fun and a common father who was nutty, smart and funny, too.
During my traumatic illness in 1996/97, he was one of the first ones there and tended me, my husband, and my children. It was extremely difficult for him as he was coming off his own wave of losing many friends and loved ones due to the AIDS epidemic.
He earned a bit of his own fame, too, becoming one of the first discovered men who could NOT contract the AIDS virus no matter how many times they hit his blood with the dirty little cells. He volunteered his own living body to science so they could figure out why all his friends were dying and he wasn't. The blood markers of "The Man Who Can't Catch Aids" were used in the first studies to develop treatments to combat AIDS and his appearances on news programs across the world opened a new field of study for many. We even visited his hologram likeness explaining the discovery at EPCOT in Florida.
God, I will miss him. As he aged, he developed physical illnesses that slowed him down considerably. Did he take the best care of himself? No. Did my sister and I urge him over and over again to do so? Of course we did. It didn't help. He died anyway - much too young.
So my brother who knew every Beatles song ever written will join his mother, our father, and partner in Heaven and grace will uplift his aching soul to heal forevermore.
God, I will miss him. I love you, brother.
My dear brother, Stephen Lyon Crohn, age 66, died unexpectedly yesterday. He was an incredible painter, photographer, writer, volunteer for a number of worthy causes yet endured a tremendous set of difficult circumstances in his life that ultimately overwhelmed him. I understand, I think. I already miss his incredible humor and unmatched intelligence (Mensa Member).
I write this through salty tears that have been pouring from my unseeing eyes for hours. It's enough to make me sick of myself but I know I must go through the process. Grief is never easy.
What can I say except goodbye? How can I stumble through these next few days honoring his memory, mourning his loss, and still take one practical step in front of the other? I don't really know.
My brother was, at times, my best friend. Although 14 years older than me, he was ever-present, it seemed, and could always make me laugh and we shared a similar sense of wicked humor. We were partners in practical jokes and he was wonderful with my children until the dark clouds overcame him sometime at the turn of the 21st century, a milestone for all us baby boomers. Even though I'm on the tail end of the baby boomer curve, we still shared some hippie fun and a common father who was nutty, smart and funny, too.
During my traumatic illness in 1996/97, he was one of the first ones there and tended me, my husband, and my children. It was extremely difficult for him as he was coming off his own wave of losing many friends and loved ones due to the AIDS epidemic.
He earned a bit of his own fame, too, becoming one of the first discovered men who could NOT contract the AIDS virus no matter how many times they hit his blood with the dirty little cells. He volunteered his own living body to science so they could figure out why all his friends were dying and he wasn't. The blood markers of "The Man Who Can't Catch Aids" were used in the first studies to develop treatments to combat AIDS and his appearances on news programs across the world opened a new field of study for many. We even visited his hologram likeness explaining the discovery at EPCOT in Florida.
God, I will miss him. As he aged, he developed physical illnesses that slowed him down considerably. Did he take the best care of himself? No. Did my sister and I urge him over and over again to do so? Of course we did. It didn't help. He died anyway - much too young.
So my brother who knew every Beatles song ever written will join his mother, our father, and partner in Heaven and grace will uplift his aching soul to heal forevermore.
God, I will miss him. I love you, brother.
August 19, 2013
Chronic Tonic?
Ugh. Yesterday I had the displeasure of shelling out another $400 in co-pays for three prescription medications. And that's just for one month! On average, my monthly co-pays are about $600 for the seven total pharmaceutical meds I take, or $7200 a year.
Add the new supplements I'm taking (10) and two compounded medicines and I don't even want to calculate the cost of being chronically ill. But the U.S. National Center for Health Statistics (part of the C.D.C.) does. They explain:
More than 75% of all health care costs are due to chronic conditions.Four of the five most expensive health conditions (based on total health care spending in a given year in the United States) are chronic conditions.The top four chronic illnesses are heart disease, cancer, mental disorders, and pulmonary conditions. Cancer is the most expensive and heart disease the second most expensive.A 2007 study reported that seven chronic diseases – cancer, diabetes, hypertension, stroke, heart disease, pulmonary conditions, and mental illness – have a total impact on the economy of $1.3 trillion annually. By the year 2023, this number is projected to increase to $4.2 trillion dollars.Chronic disease reaches into our homes, our hearts, and our wallets. No kidding!
But when they cite the trillions of dollars of impact on our economy, aren't they talking about us? It's the money WE pay that keeps these medical industries in business, particularly the pharmaceutical companies.
As my readers know, I embarked on a journey of integrative/functional medicine about six months ago. Of course, it started with changes to my diet and continues with therapies and supplements that, according to the Institute for Functional Medicine is "healing-oriented medicine that takes account of the whole person (body, mind, and spirit), including all aspects of lifestyle."
Moreover, "it emphasizes the therapeutic relationship and makes use of all appropriate therapies, both conventional and alternative." It's personalized medicine that seeks to not only discover a diagnosis or diagnoses but also seeks to answer the question: Why does this person have this illness?
They summarize: "The answer to this question is revealed by discovering the antecedents, triggers, and mediators that underlie symptoms, signs, illness behaviors, and demonstrable pathology. Further, medical genomics can identify the phenotypic expression of disease-related genes and their products, affording another lens through which to view illness. Chronic diseases cut across multiple organ systems, and this calls for a systematic method of viewing each patient."
Well, isn't that what I've been saying in much less clinical terms? The toxic stress of my childhood experience pre-disposed me to develop serious and chronic illness. Finding a solution or combination of solutions to live a quality life is the never-ending challenge.
So, I'm straddling the bridge right now - still following 'doctor's orders' and taking traditional treatments and participating in never-ending tests yet also incorporating my integrative/functional medical doctor's orders and adding dietary supplements and lifestyle changes while keenly focusing on what meds I can afford to lose and which new treatments I can afford to keep!
It's enough to make me go mad!
But I will persevere and accomplish what seems to be out of my reach; impossible. I'm trying as hard as I can and I know you are, too. Running backwards? It's an apt sub-title to my book. It's one of the hardest things to do every single day. But I'm not quitting. Nope. It's just not an option.
Add the new supplements I'm taking (10) and two compounded medicines and I don't even want to calculate the cost of being chronically ill. But the U.S. National Center for Health Statistics (part of the C.D.C.) does. They explain:
More than 75% of all health care costs are due to chronic conditions.Four of the five most expensive health conditions (based on total health care spending in a given year in the United States) are chronic conditions.The top four chronic illnesses are heart disease, cancer, mental disorders, and pulmonary conditions. Cancer is the most expensive and heart disease the second most expensive.A 2007 study reported that seven chronic diseases – cancer, diabetes, hypertension, stroke, heart disease, pulmonary conditions, and mental illness – have a total impact on the economy of $1.3 trillion annually. By the year 2023, this number is projected to increase to $4.2 trillion dollars.Chronic disease reaches into our homes, our hearts, and our wallets. No kidding!
But when they cite the trillions of dollars of impact on our economy, aren't they talking about us? It's the money WE pay that keeps these medical industries in business, particularly the pharmaceutical companies.
As my readers know, I embarked on a journey of integrative/functional medicine about six months ago. Of course, it started with changes to my diet and continues with therapies and supplements that, according to the Institute for Functional Medicine is "healing-oriented medicine that takes account of the whole person (body, mind, and spirit), including all aspects of lifestyle."
Moreover, "it emphasizes the therapeutic relationship and makes use of all appropriate therapies, both conventional and alternative." It's personalized medicine that seeks to not only discover a diagnosis or diagnoses but also seeks to answer the question: Why does this person have this illness?
They summarize: "The answer to this question is revealed by discovering the antecedents, triggers, and mediators that underlie symptoms, signs, illness behaviors, and demonstrable pathology. Further, medical genomics can identify the phenotypic expression of disease-related genes and their products, affording another lens through which to view illness. Chronic diseases cut across multiple organ systems, and this calls for a systematic method of viewing each patient."
Well, isn't that what I've been saying in much less clinical terms? The toxic stress of my childhood experience pre-disposed me to develop serious and chronic illness. Finding a solution or combination of solutions to live a quality life is the never-ending challenge.
So, I'm straddling the bridge right now - still following 'doctor's orders' and taking traditional treatments and participating in never-ending tests yet also incorporating my integrative/functional medical doctor's orders and adding dietary supplements and lifestyle changes while keenly focusing on what meds I can afford to lose and which new treatments I can afford to keep!
It's enough to make me go mad!
But I will persevere and accomplish what seems to be out of my reach; impossible. I'm trying as hard as I can and I know you are, too. Running backwards? It's an apt sub-title to my book. It's one of the hardest things to do every single day. But I'm not quitting. Nope. It's just not an option.
August 12, 2013
Staying Alive! GUEST BLOG
GUEST POST
This week my blog is happy to present Donna R. Gore a.k.a. "Lady Justice" who seeks to right wrongs within the criminal justice system, particularly for the families of victims of homicide, yet also shines a bright spotlight on numerous causes on her own blog and radio show, Shattered Lives. I was privileged to be a guest on the show this past Saturday. Podcast link is below. Thank you, Lady Justice!
John Travolta’s character, (Tony Manero) In Saturday Night Fever was a carefree Brooklyn youth and dance idol on the weekends. His “star qualities” assisted him in temporarily forgetting the reality of his life: (i.e. a go nowhere job, conflicts with bickering parents, racial tensions in his community, and his “too cool, macho” friends.)“Whether you're a brother or whether you're a mother
You're stayin' alive, stayin' alive
Feel the city breakin' and everybody shakin'
Stayin' alive, stayin' alive
Ah, ha, ha, ha, stayin' alive, stayin' alive
Ah, ha, ha, ha, stayin' aliveLife's goin' nowhere, somebody help me
Somebody help me, yeah
Life's goin' nowhere, somebody help me, yeah
Stayin' alive….”(http://www.metrolyrics.com/stayin-alive-lyrics-bee-gees.html)
Amy Susan Crohn had her own Italian Stallion, Will, who stood vigil, was a devoted husband and gave Amy the fortitude to stay alive….
Constance Porter, a sophisticated magazine writer – photographer was in charge of the ship’s log in Alfred Hitchcock’s 1944 movie, Lifeboat. “Providing she could show the copyright in all publications…” The lifeboat held eight survivors following a Nazi torpedo attack. NOTICE THE FACT THAT CONNIE DRAGGED HER TYPEWRITER ON A LIFEBOAT!!! [Ladyjustice thinks that Amy Susan Crohn would have done the same thing…After all a girl has to make a living…life boat or no life boat!] Everyone has to STAY ALIVE! See the classic trailer:
Such is the essence of life…whether real or imagined….. In Amy’s case, it was almost too tragic to be real…. But it was…. And…. make no mistake…her book, “Dying to Live; Running Backwards through Cancer, Lupus and Chronic Illness,” is definitely not just another tragic real life drama… for it has deep roots in medical research. Amy was the one to excavate information and innovate…. linking childhood deprivation and abuse to adulthood disease and chronic illness, in addition to the possibility of premature death… Why is no one talking about this? Why don’t MDs know?The “Shattered Lives” team, with Amy as guest, set out to make others aware of the emotional toll, and what “professional patients” and doctors need to do as soon as possible!
LISTEN TO THE PODCAST
Delilah on “Shattered Lives,” a radio show to learn from… as in life;Introduction to our guest and her book;Page 122: “A medical rollercoaster” ;Amy’s description of her journey – Stage Four Cancer and Lupus…. Close to Death…. And… the Aftermath that goes with it;“The Statue” – A visualization…an alter ego, a barometer…The need for bravery and doubt in the face of tragedy and chronic illness…;The W’s…. What who, where, when, how, ….Delilah asks, What compelled Amy to write her book?; Expressions of healing…Ladyjustice’s “aha” moments… matching her life and medical experiences with Amy’s;A lawsuit …and no chance of winning;A doctor without integrity…. “A MA…stake”Delilah asks about Amy’s opinion on the care that is doled out versus the care that we really deserve?The “Dear Doctor” story…. “Work with me….”The “Horror” of being prepared;Amy’s hope starting with Grand Rounds;Ladyjustice asks about the important elements (i.e. the Ace Study-Adverse Childhood Experiences);For over 20 years if maltreated or suffered trauma as a child, patients have an 87% likelihood of developing physical, and psychological – psychiatric illness as an adult;Question types discussed on the ACE;Amy’s score on the test…What’s the Resiliency Survey about? Amy discusses other prerequisites needed;If you have a score of one on the ACE, is it important?Ladyjustice speculates on resiliency and premature death;Amy discusses the many difficulties of revealing your illness when you’re sick;A discussion of toxic stress- trauma and “the roller coaster ride”You want to get on with your life and not have physicians “just treat the symptoms…”Amy’s opinion on diseases of heredity and those we acquire “randomly;”Coping with stress…. Bolstering the immune system;Descriptions of Amy’s Mom and Dad…. What were the issues and how to deal?Crying for help… but who listened?Ladyjustice comments on the importance of having a home and her multitude of jobs to survive;Delilah comments on Amy’s fortitude, her lack of nurturing childhood and losing it all…. She asks, “What did you gain?”“The After Cancer Amy;” and “Earth is a School” according to Amy;A sad commentary on her mother and father’s lives;“When I don’t feel good, I really doubt myself…. “Working for TV Cable Week – Amy’s gift and solace;Foster parenting – a retrospective comment on what it was like then and now regarding child protective services;Ladyjustice’s AMA vision for Amy;***Amy’s special message for a relative who made it all worth it….“the greatest gift”Amy’s Contact Info: http://www.dyingtoliveamy.com/;Amy’s Parting Message: “We Don’t Cause our Own Illnesses….We Are Vessels… All things that come into out mind, body and soul are put there for a reason …..”Questions You May Have…What’s the difference between a misdiagnosis and a “missed diagnosis” and how did this pertain to Amy?Of what value is “the Statue?”What was the result of Amy’s doubting of her treatment plan?How did Amy defy the authority of her initial Primary Care Physician, “Dr. C”?What was the aftermath of the medical malpractice lawsuit?What was the outcome of the advice of Amy’s initial physicians?Unfulfilled promises led to what kind of important patient tool?How can we make doctors care about the entire patient instead of “check the box” items?Where is further research being conducted regarding ACE?What is the benchmark score that would predict the likelihood of adult illnesses?What happens after the ACE Study?What populations were tested with the ACE Survey and what are the implications?What’s the Number 1 cause of premature death?Does it really matter what happened for the first 18 years of your life?Do we cause all of our medical problems?What were the family relationships in Amy’s quest for survival?What is the significance of the location of Amy’s tumor?What were the happy things?What was the history of child protective services and the trends today?Postscript from Ladyjustice:A very special message- a 3 minute 57 second video “Her Diamonds” from Rob Thomas who is the songwriter and lead singer of the band Matchbox Twenty, as well as a solo artist who has performed with many other musicians, earning three Grammys co-writing with Carlos Santana on the hit track "Smooth." The song, "Her Diamonds" references his wife Marisol's auto-immune disease.
From Wikipedia:Thomas and his wife Marisol Maldonado married on October 2, 1999 and currently live in Bedford, New York. The couple also have a home on Lake Marion in Manning, South Carolina. Thomas has a son named Maison (born July 10, 1998) from a previous relationship. The Thomases are committed animal lovers and supporters of animal charities.Rob and his wife have established the Sidewalk Angels Foundation,[9] a non-profit organization created to help needy people in and around America’s big cities by partnering with various charities to assist people who cannot afford medical care, and animals that have been abandoned or abused.
Beautiful composition and interesting coincidences!
‘For you too Amy Susan...
The comments expressed on this website or on the broadcasts of Shattered Lives do not necessarily reflect the opinions or beliefs of the hosts, producers, or other guests.
This week my blog is happy to present Donna R. Gore a.k.a. "Lady Justice" who seeks to right wrongs within the criminal justice system, particularly for the families of victims of homicide, yet also shines a bright spotlight on numerous causes on her own blog and radio show, Shattered Lives. I was privileged to be a guest on the show this past Saturday. Podcast link is below. Thank you, Lady Justice!
John Travolta’s character, (Tony Manero) In Saturday Night Fever was a carefree Brooklyn youth and dance idol on the weekends. His “star qualities” assisted him in temporarily forgetting the reality of his life: (i.e. a go nowhere job, conflicts with bickering parents, racial tensions in his community, and his “too cool, macho” friends.)“Whether you're a brother or whether you're a mother
You're stayin' alive, stayin' alive
Feel the city breakin' and everybody shakin'
Stayin' alive, stayin' alive
Ah, ha, ha, ha, stayin' alive, stayin' alive
Ah, ha, ha, ha, stayin' aliveLife's goin' nowhere, somebody help me
Somebody help me, yeah
Life's goin' nowhere, somebody help me, yeah
Stayin' alive….”(http://www.metrolyrics.com/stayin-alive-lyrics-bee-gees.html)
Amy Susan Crohn had her own Italian Stallion, Will, who stood vigil, was a devoted husband and gave Amy the fortitude to stay alive….
Constance Porter, a sophisticated magazine writer – photographer was in charge of the ship’s log in Alfred Hitchcock’s 1944 movie, Lifeboat. “Providing she could show the copyright in all publications…” The lifeboat held eight survivors following a Nazi torpedo attack. NOTICE THE FACT THAT CONNIE DRAGGED HER TYPEWRITER ON A LIFEBOAT!!! [Ladyjustice thinks that Amy Susan Crohn would have done the same thing…After all a girl has to make a living…life boat or no life boat!] Everyone has to STAY ALIVE! See the classic trailer:
Such is the essence of life…whether real or imagined….. In Amy’s case, it was almost too tragic to be real…. But it was…. And…. make no mistake…her book, “Dying to Live; Running Backwards through Cancer, Lupus and Chronic Illness,” is definitely not just another tragic real life drama… for it has deep roots in medical research. Amy was the one to excavate information and innovate…. linking childhood deprivation and abuse to adulthood disease and chronic illness, in addition to the possibility of premature death… Why is no one talking about this? Why don’t MDs know?The “Shattered Lives” team, with Amy as guest, set out to make others aware of the emotional toll, and what “professional patients” and doctors need to do as soon as possible!
LISTEN TO THE PODCAST
Delilah on “Shattered Lives,” a radio show to learn from… as in life;Introduction to our guest and her book;Page 122: “A medical rollercoaster” ;Amy’s description of her journey – Stage Four Cancer and Lupus…. Close to Death…. And… the Aftermath that goes with it;“The Statue” – A visualization…an alter ego, a barometer…The need for bravery and doubt in the face of tragedy and chronic illness…;The W’s…. What who, where, when, how, ….Delilah asks, What compelled Amy to write her book?; Expressions of healing…Ladyjustice’s “aha” moments… matching her life and medical experiences with Amy’s;A lawsuit …and no chance of winning;A doctor without integrity…. “A MA…stake”Delilah asks about Amy’s opinion on the care that is doled out versus the care that we really deserve?The “Dear Doctor” story…. “Work with me….”The “Horror” of being prepared;Amy’s hope starting with Grand Rounds;Ladyjustice asks about the important elements (i.e. the Ace Study-Adverse Childhood Experiences);For over 20 years if maltreated or suffered trauma as a child, patients have an 87% likelihood of developing physical, and psychological – psychiatric illness as an adult;Question types discussed on the ACE;Amy’s score on the test…What’s the Resiliency Survey about? Amy discusses other prerequisites needed;If you have a score of one on the ACE, is it important?Ladyjustice speculates on resiliency and premature death;Amy discusses the many difficulties of revealing your illness when you’re sick;A discussion of toxic stress- trauma and “the roller coaster ride”You want to get on with your life and not have physicians “just treat the symptoms…”Amy’s opinion on diseases of heredity and those we acquire “randomly;”Coping with stress…. Bolstering the immune system;Descriptions of Amy’s Mom and Dad…. What were the issues and how to deal?Crying for help… but who listened?Ladyjustice comments on the importance of having a home and her multitude of jobs to survive;Delilah comments on Amy’s fortitude, her lack of nurturing childhood and losing it all…. She asks, “What did you gain?”“The After Cancer Amy;” and “Earth is a School” according to Amy;A sad commentary on her mother and father’s lives;“When I don’t feel good, I really doubt myself…. “Working for TV Cable Week – Amy’s gift and solace;Foster parenting – a retrospective comment on what it was like then and now regarding child protective services;Ladyjustice’s AMA vision for Amy;***Amy’s special message for a relative who made it all worth it….“the greatest gift”Amy’s Contact Info: http://www.dyingtoliveamy.com/;Amy’s Parting Message: “We Don’t Cause our Own Illnesses….We Are Vessels… All things that come into out mind, body and soul are put there for a reason …..”Questions You May Have…What’s the difference between a misdiagnosis and a “missed diagnosis” and how did this pertain to Amy?Of what value is “the Statue?”What was the result of Amy’s doubting of her treatment plan?How did Amy defy the authority of her initial Primary Care Physician, “Dr. C”?What was the aftermath of the medical malpractice lawsuit?What was the outcome of the advice of Amy’s initial physicians?Unfulfilled promises led to what kind of important patient tool?How can we make doctors care about the entire patient instead of “check the box” items?Where is further research being conducted regarding ACE?What is the benchmark score that would predict the likelihood of adult illnesses?What happens after the ACE Study?What populations were tested with the ACE Survey and what are the implications?What’s the Number 1 cause of premature death?Does it really matter what happened for the first 18 years of your life?Do we cause all of our medical problems?What were the family relationships in Amy’s quest for survival?What is the significance of the location of Amy’s tumor?What were the happy things?What was the history of child protective services and the trends today?Postscript from Ladyjustice:A very special message- a 3 minute 57 second video “Her Diamonds” from Rob Thomas who is the songwriter and lead singer of the band Matchbox Twenty, as well as a solo artist who has performed with many other musicians, earning three Grammys co-writing with Carlos Santana on the hit track "Smooth." The song, "Her Diamonds" references his wife Marisol's auto-immune disease.
From Wikipedia:Thomas and his wife Marisol Maldonado married on October 2, 1999 and currently live in Bedford, New York. The couple also have a home on Lake Marion in Manning, South Carolina. Thomas has a son named Maison (born July 10, 1998) from a previous relationship. The Thomases are committed animal lovers and supporters of animal charities.Rob and his wife have established the Sidewalk Angels Foundation,[9] a non-profit organization created to help needy people in and around America’s big cities by partnering with various charities to assist people who cannot afford medical care, and animals that have been abandoned or abused.
Beautiful composition and interesting coincidences!
‘For you too Amy Susan...
The comments expressed on this website or on the broadcasts of Shattered Lives do not necessarily reflect the opinions or beliefs of the hosts, producers, or other guests.
August 7, 2013
Feeling GROOVY!
Hello lamp post, whatcha knowing; I think you've got some flowers growing.Ain't ya got no time for me; boop bee dee boop boop feeling groovy!
It's the very first song I learned on guitar as a young girl in the '60s. I was so excited! I felt part of a revolution generation where everything was going to be wonderful, loving and happy!
A few weeks ago, I was in an awful Lupus flare and, yes, I was the lamp post - stuck because I was in so much pain. But then a wonderful thing happened - some flowers started growing around me and I've come alive again.
In the past week, I've been blessed with a wonderful, private book launch party, a FREE promotion on Amazon Kindle that has attracted over 150 downloads in just two days, a raffle for 10 of my books on goodreads where 235 readers have entered and added DYING TO LIVE: Running backwards through cancer, Lupus and Chronic illness to their "want to read" lists and I'm taping a local television show in Myrtle Beach, SC today. It is called Your Health is Wealth with Dalal Akoury, M.D. I will be representing the cancer patient's point of view.
Flowers, flowers everywhere!
And those are just the successes I'm having right now. Some of my colleagues and friends who also struggle with chronic illness are in the midst of celebratory events as well. I am as excited for them as I am for me.
Yet, unfortunately, I wait. I wait for the ax to fall; the shoe to drop. I know this time will be fleeting since my ailments are so unpredictable. I'm continuing with the new integrative/functional medicine diet and supplements and find that I am feeling better but I still can't attribute any of it to my overall well-being. Time will tell. It is still too soon. I am hopeful.
And that's the best those of us who are sick can do - be hopeful and helpful to others who are experiencing the same. I try. I wake each day wondering what small steps I can take and in what order I will take them. I know today is a biggie with the television show taping, so tomorrow will be a day of rest. I've learned that much.
So go off today and enjoy that shower if that's all you can do. Do an errand. Visit with a pal. Write a poem. If you can't leave your bed, that's okay, too. Place a vase of beautifully smelling flowers next to your bed. Inhale their scent and know that even though you're the lamp post today, seeds are already being planted for you for tomorrow.
Book launch party at Coastal Wine Boutique, Myrtle Beach, SC
It's the very first song I learned on guitar as a young girl in the '60s. I was so excited! I felt part of a revolution generation where everything was going to be wonderful, loving and happy!
A few weeks ago, I was in an awful Lupus flare and, yes, I was the lamp post - stuck because I was in so much pain. But then a wonderful thing happened - some flowers started growing around me and I've come alive again.
In the past week, I've been blessed with a wonderful, private book launch party, a FREE promotion on Amazon Kindle that has attracted over 150 downloads in just two days, a raffle for 10 of my books on goodreads where 235 readers have entered and added DYING TO LIVE: Running backwards through cancer, Lupus and Chronic illness to their "want to read" lists and I'm taping a local television show in Myrtle Beach, SC today. It is called Your Health is Wealth with Dalal Akoury, M.D. I will be representing the cancer patient's point of view.
Flowers, flowers everywhere!
And those are just the successes I'm having right now. Some of my colleagues and friends who also struggle with chronic illness are in the midst of celebratory events as well. I am as excited for them as I am for me.
Yet, unfortunately, I wait. I wait for the ax to fall; the shoe to drop. I know this time will be fleeting since my ailments are so unpredictable. I'm continuing with the new integrative/functional medicine diet and supplements and find that I am feeling better but I still can't attribute any of it to my overall well-being. Time will tell. It is still too soon. I am hopeful.
And that's the best those of us who are sick can do - be hopeful and helpful to others who are experiencing the same. I try. I wake each day wondering what small steps I can take and in what order I will take them. I know today is a biggie with the television show taping, so tomorrow will be a day of rest. I've learned that much.
So go off today and enjoy that shower if that's all you can do. Do an errand. Visit with a pal. Write a poem. If you can't leave your bed, that's okay, too. Place a vase of beautifully smelling flowers next to your bed. Inhale their scent and know that even though you're the lamp post today, seeds are already being planted for you for tomorrow.
Book launch party at Coastal Wine Boutique, Myrtle Beach, SCJuly 30, 2013
Healing Happens...
Yes, it does. I'm witnessing it with the release of my book among those who have read it and shared their personal stories with me.
Besides being an "inspiration" or an "example of strength and survival," the comments that hit me hardest are those that tell me I have broken through a barrier to one's own healing and they have taken steps (or, simply, one step) towards making positive, guided changes in their life.
This inspires me to continue. This urges me forward with my own constant health care. This is why I wrote the book.
Someone very near and dear to me has made a tremendous breakthrough simply by digesting the words and applying them through elective counseling and therapy. If this was the sole reason for my book's publication, I am more than grateful. I am elated. Others, too, are telling me similar stories; ones that break my heart but are also so uplifting because I know these readers are on their way to healing individual trauma.
Those of us who have been impacted by childhood abuse or maltreatment understand the lifelong effects. And, as I keep repeating, current studies, like The ACE Study, reveal that we are more prone to adult physical illness. We are 'damaged goods' and have to strive to break the mold that was set for us as youngsters. It is never easy to be told by anyone, including a trained professional, that in order to fully heal, we must revisit our past - open up old wounds; remember things we don't want to remember or can't even remember. Dig deeper, they say. And my book is like the back hoe.
I am amazed.
This week I have a private book launch party scheduled in the south. About 40 friends and others are planning to attend. I am overwhelmed with the response and while I learn how to communicate my message verbally as well as by the written word, I am getting excited about replicating this event in New York and other places around the country. I'm also keeping a close eye on not wearing myself out and inducing a flare of my own chronic illnesses.
This is a personal post rather than an educational one. Thank you for the indulgence. Thank you for believing in what I have to say. Thank you for allowing me to live my life among the strongest people I know - those who are always seeking to improve, to change, to heal.
Healing happens.
http://www.butyoudontlooksick.com/
Besides being an "inspiration" or an "example of strength and survival," the comments that hit me hardest are those that tell me I have broken through a barrier to one's own healing and they have taken steps (or, simply, one step) towards making positive, guided changes in their life.
This inspires me to continue. This urges me forward with my own constant health care. This is why I wrote the book.
Someone very near and dear to me has made a tremendous breakthrough simply by digesting the words and applying them through elective counseling and therapy. If this was the sole reason for my book's publication, I am more than grateful. I am elated. Others, too, are telling me similar stories; ones that break my heart but are also so uplifting because I know these readers are on their way to healing individual trauma.
Those of us who have been impacted by childhood abuse or maltreatment understand the lifelong effects. And, as I keep repeating, current studies, like The ACE Study, reveal that we are more prone to adult physical illness. We are 'damaged goods' and have to strive to break the mold that was set for us as youngsters. It is never easy to be told by anyone, including a trained professional, that in order to fully heal, we must revisit our past - open up old wounds; remember things we don't want to remember or can't even remember. Dig deeper, they say. And my book is like the back hoe.
I am amazed.
This week I have a private book launch party scheduled in the south. About 40 friends and others are planning to attend. I am overwhelmed with the response and while I learn how to communicate my message verbally as well as by the written word, I am getting excited about replicating this event in New York and other places around the country. I'm also keeping a close eye on not wearing myself out and inducing a flare of my own chronic illnesses.
This is a personal post rather than an educational one. Thank you for the indulgence. Thank you for believing in what I have to say. Thank you for allowing me to live my life among the strongest people I know - those who are always seeking to improve, to change, to heal.
Healing happens.
http://www.butyoudontlooksick.com/July 22, 2013
There is a Safe Place for children - in Philadelphia!
Hey PHILADELPHIA! Congratulations!
I am so happy to read about Safe Place: The Center for Child Protection and Health and Cindy Christian, M.D. who won this year's international Ray E. Helfer Award for physicians dedicated to treating and preventing child abuse. The Ray E. Helfer Society's mission is "to help prevent and reduce the harm resulting from child maltreatment, by advancing the work of physicians in the areas of education, clinical care, research, and advocacy."
Dr. Christian of The Children’s Hospital of Philadelphia (CHOP) was recognized this month for developing and then bringing to doctors' offices "an educational program to help 'front line' healthcare providers recognize and respond effectively to child abuse and neglect cases." She also co-edited the third edition of the classic text Child Abuse: Medical Diagnosis and Management and has made significant additions to the knowledge base of child maltreatment prevention.
Moreover, Safe Place is staffed by an interdisciplinary team of physicians, psychologists, social workers and other hospital personnel designed to provide the best care to children and families dealing with child abuse or neglect.
Hooray team! Could we ask for anything more?
Cooperation among health care providers and those who work to protect children in all cases is key to recognizing and eliminating this epidemic in our society. Have no doubt, people, it is epidemic. According to The Children's Wall of Tears founders Jane Lemond Alvarez and Leo Alvarez, 2500 children are killed each month at the hands of parents, caregivers and/or boyfriends and girlfriends of the parents.
And my own research reveals that those who are maltreated or abused as children are pre-disposed biologically and physiologically to adult physical illness. (See The ACE Study), I hate to keep repeating the same thing over and over again, but we all need to stop the cycle at its core - at home and in the courts who return children to their abusers over and over again.
Thank you, Dr. Cindy Christian and Safe Place. Let's see if this model can be copied all over the world!
I am so happy to read about Safe Place: The Center for Child Protection and Health and Cindy Christian, M.D. who won this year's international Ray E. Helfer Award for physicians dedicated to treating and preventing child abuse. The Ray E. Helfer Society's mission is "to help prevent and reduce the harm resulting from child maltreatment, by advancing the work of physicians in the areas of education, clinical care, research, and advocacy."
Dr. Christian of The Children’s Hospital of Philadelphia (CHOP) was recognized this month for developing and then bringing to doctors' offices "an educational program to help 'front line' healthcare providers recognize and respond effectively to child abuse and neglect cases." She also co-edited the third edition of the classic text Child Abuse: Medical Diagnosis and Management and has made significant additions to the knowledge base of child maltreatment prevention.
Moreover, Safe Place is staffed by an interdisciplinary team of physicians, psychologists, social workers and other hospital personnel designed to provide the best care to children and families dealing with child abuse or neglect.
Hooray team! Could we ask for anything more?
Cooperation among health care providers and those who work to protect children in all cases is key to recognizing and eliminating this epidemic in our society. Have no doubt, people, it is epidemic. According to The Children's Wall of Tears founders Jane Lemond Alvarez and Leo Alvarez, 2500 children are killed each month at the hands of parents, caregivers and/or boyfriends and girlfriends of the parents.
And my own research reveals that those who are maltreated or abused as children are pre-disposed biologically and physiologically to adult physical illness. (See The ACE Study), I hate to keep repeating the same thing over and over again, but we all need to stop the cycle at its core - at home and in the courts who return children to their abusers over and over again.
Thank you, Dr. Cindy Christian and Safe Place. Let's see if this model can be copied all over the world!
July 16, 2013
Flare thee well
It's over. For now. The Lupus flare that had me in its grips for the past two weeks or so seems to have abated. What worked? I don't know.
It's been a couple of months that I've started implementing an integrative and functional medicine regimen including a complete change of diet and the addition of many supplements - slowly. Yet, I still had to turn to corticosteroids to pull me out of the depths of the flare; lessen the intense pain and fatigue and clear the fog from my brain. A failure? I don't think so. It's a combined process.
According to The Mayo Clinic, corticosteroids "mimic the effects of hormones your body produces naturally in your adrenal glands, which sit on top of your kidneys. When prescribed in doses that exceed your body's usual levels, corticosteroids suppress inflammation. This can reduce the signs and symptoms of inflammatory conditions..."
"Corticosteroids also suppress your immune system, which can help control conditions in which your immune system mistakenly attacks its own tissues."
There's no question that corticosteroids used for Lupus and fibromyalgia and the treatment of certain cancers and other illnesses works but they are also UNhealthy for a variety of reasons, including increased risk of osteoporosis, glaucoma, high blood pressure and Cushing's Syndrome if taken for a long period of time and in high doses by mouth and/or intravenously.
I hate them. So does my integrative/functional medical doctor Dalal Akoury, M.D. and she was distressed that it was my chosen course of action but I needed relief - fast - and I knew it would work. I simply haven't been under her care long enough to allow all her prescribed recommendations to work. And because I am in New York and she is in South Carolina, I must see her only on my visits there. I go next week.
But, I'm trying. I'm really trying. And I am seeing improvements. The flare was obviously caused by over-exertion and stress due to moving residences and the launch of my book. Now that I'm out of it, I'm continuing to add in Dr. Akoury's supplements one by one, ensuring that I have no reaction to the first before I start the second, third, fourth or fifth. I can't wait to see her again and discuss my progress.
Immune system disorders. My goodness, there are thousands of them that put our bodies in battle with ourselves. Stay tuned for more health updates! I know they are fascinating (tongue planted firmly in cheek).
It's been a couple of months that I've started implementing an integrative and functional medicine regimen including a complete change of diet and the addition of many supplements - slowly. Yet, I still had to turn to corticosteroids to pull me out of the depths of the flare; lessen the intense pain and fatigue and clear the fog from my brain. A failure? I don't think so. It's a combined process.
According to The Mayo Clinic, corticosteroids "mimic the effects of hormones your body produces naturally in your adrenal glands, which sit on top of your kidneys. When prescribed in doses that exceed your body's usual levels, corticosteroids suppress inflammation. This can reduce the signs and symptoms of inflammatory conditions..."
"Corticosteroids also suppress your immune system, which can help control conditions in which your immune system mistakenly attacks its own tissues."
There's no question that corticosteroids used for Lupus and fibromyalgia and the treatment of certain cancers and other illnesses works but they are also UNhealthy for a variety of reasons, including increased risk of osteoporosis, glaucoma, high blood pressure and Cushing's Syndrome if taken for a long period of time and in high doses by mouth and/or intravenously.
I hate them. So does my integrative/functional medical doctor Dalal Akoury, M.D. and she was distressed that it was my chosen course of action but I needed relief - fast - and I knew it would work. I simply haven't been under her care long enough to allow all her prescribed recommendations to work. And because I am in New York and she is in South Carolina, I must see her only on my visits there. I go next week.
But, I'm trying. I'm really trying. And I am seeing improvements. The flare was obviously caused by over-exertion and stress due to moving residences and the launch of my book. Now that I'm out of it, I'm continuing to add in Dr. Akoury's supplements one by one, ensuring that I have no reaction to the first before I start the second, third, fourth or fifth. I can't wait to see her again and discuss my progress.
Immune system disorders. My goodness, there are thousands of them that put our bodies in battle with ourselves. Stay tuned for more health updates! I know they are fascinating (tongue planted firmly in cheek).
July 12, 2013
It's EPIGENETIC
Wow! Every day there is something new to be learned thanks to ongoing research in the connection between childhood maltreatment and adult physical illness.
Today's term is epigenetics which is the study of the process by which genetic information is translated into the substance and behavior of an organism: specifically, the study of the way in which the expression of heritable traits is modified by environmental influences or other mechanisms without a change to the DNA sequence.
According to researchers at the National Human Geonome Research Institute, a study evaluating post traumatic stress disorder (PTSD) in adults reveals:
At the biological level, these individuals may be very distinct, as we see with the epigenetics. As we move forward with more personalized medicine, we will need to delve a bit further into the environment and history of each individual to understand the biology of their PTSD and to determine the best treatment for their disorder. - Dr. Divya Mehta, corresponding author at the Max Planck Institute of Psychiatry.
Aha! Delve a bit further into the environment and history of each individual...YES!
The study continues to explain that this is not limited to PTSD, but to cancer, autoimmune system disorders, and mental health issues that were essentially 'rubber-stamped' in our biology if we were neglected and/or abused either physically or emotionally during childhood.
I learn something new every day. And to finally have evidence that my own biologic markers were altered due to the neglect and maltreatment I suffered as a child makes my dis-ease NOT MY FAULT!
As Rosalind Joffee, The Chronic Illness Career Coach, offered recently in an article guest-authored in her company's newsletter entitled "Are You the Cause of Your Chronic Illness", certain researchers concluded that many of us "develop[ed] illnesses relating to the bitterness and resentment they carried as a result of suppressing their feelings in order to keep peace with others.”
Excuse me, but that's a load of bull crap because as the writer continues: "This implies that chronically ill people cause their disease and failure to improve is their fault." There is absolutely no science to support this.
"Also," says she, "in my experience, this kind of blaming is counterproductive for someone who is struggling to improve her health."
Yes, ma'am. Let's do our best to make sick people think they caused it or deserved it (tongue planted firmly in cheek). How would one explain that in the case of an ill baby? What did they do in the womb?
What I have learned is that disease (or dis-ease) can be correlated to certain events in one's life as well as be labeled as entirely random. As a wise man once said to me as I was railing against my critical illness and crying out the question "why me," he simply said, "why not you?" And why not, indeed?
People get sick and for a variety of reasons. While writing my book I literally stumbled across research that linked childhood maltreatment with adult physical illness. In my own personal case, I believe it to be spot on.
Let's not blame ourselves. Let's remember we are here for a reason and continue living to make a difference however small or large.
That's my rant for today. So deal with it.
Today's term is epigenetics which is the study of the process by which genetic information is translated into the substance and behavior of an organism: specifically, the study of the way in which the expression of heritable traits is modified by environmental influences or other mechanisms without a change to the DNA sequence.
According to researchers at the National Human Geonome Research Institute, a study evaluating post traumatic stress disorder (PTSD) in adults reveals:
At the biological level, these individuals may be very distinct, as we see with the epigenetics. As we move forward with more personalized medicine, we will need to delve a bit further into the environment and history of each individual to understand the biology of their PTSD and to determine the best treatment for their disorder. - Dr. Divya Mehta, corresponding author at the Max Planck Institute of Psychiatry.
Aha! Delve a bit further into the environment and history of each individual...YES!
The study continues to explain that this is not limited to PTSD, but to cancer, autoimmune system disorders, and mental health issues that were essentially 'rubber-stamped' in our biology if we were neglected and/or abused either physically or emotionally during childhood.
I learn something new every day. And to finally have evidence that my own biologic markers were altered due to the neglect and maltreatment I suffered as a child makes my dis-ease NOT MY FAULT!
As Rosalind Joffee, The Chronic Illness Career Coach, offered recently in an article guest-authored in her company's newsletter entitled "Are You the Cause of Your Chronic Illness", certain researchers concluded that many of us "develop[ed] illnesses relating to the bitterness and resentment they carried as a result of suppressing their feelings in order to keep peace with others.”
Excuse me, but that's a load of bull crap because as the writer continues: "This implies that chronically ill people cause their disease and failure to improve is their fault." There is absolutely no science to support this.
"Also," says she, "in my experience, this kind of blaming is counterproductive for someone who is struggling to improve her health."
Yes, ma'am. Let's do our best to make sick people think they caused it or deserved it (tongue planted firmly in cheek). How would one explain that in the case of an ill baby? What did they do in the womb?
What I have learned is that disease (or dis-ease) can be correlated to certain events in one's life as well as be labeled as entirely random. As a wise man once said to me as I was railing against my critical illness and crying out the question "why me," he simply said, "why not you?" And why not, indeed?
People get sick and for a variety of reasons. While writing my book I literally stumbled across research that linked childhood maltreatment with adult physical illness. In my own personal case, I believe it to be spot on.
Let's not blame ourselves. Let's remember we are here for a reason and continue living to make a difference however small or large.
That's my rant for today. So deal with it.
July 5, 2013
Coming Up ACEs
On my first radio interview regarding my book DYING TO LIVE: Running backwards through cancer, Lupus, and chronic illness, much of the discussion centered on the Adverse Childhood Effects (ACE) Study continually being conducted by the Federal Centers for Disease Control and individual states. Seems we're all coming up ACES!
The simple 10 question ACE survey gives you your score. I'm a four which places me on the 'DISEASE MOST WANTED LIST' for having a much higher risk of developing adult physical or mental illness. This is what my book talks about and brings to light in a very personal story.
In the United States, 21 states are performing their own ACE studies since learning an astonishing 87 per cent of us score more than one on the survey. As the researchers explain, this startling statistic must not be addressed with a 'top down' approach but, rather, immediately upon establishing a relationship with a physician or medical practitioner who can help mitigate the results of childhood trauma.
To wit, "the ACE Study uncovered a stunning link between childhood trauma and the chronic diseases people develop as adults, as well as social and emotional problems," says the ACES Too High web site that is filled with never-before-seen research, study results, scads of information about the way those of us with ACE scores above "0" fare in this world.According to the contributors to the site "the first research results were published in 1998, followed by 57 other publications through 2011" that revealed:Childhood trauma was very common, even in employed white middle-class, college-educated people with great health insurance;There [is] a direct link between childhood trauma and adult onset of chronic disease, as well as depression, suicide, being violent and a victim of violence;More types of trauma increased the risk of health, social and emotional problems; andPeople usually experience more than one type of trauma – rarely is it only sex abuse or only verbal abuse.
According to my own research, I found studies in Australia and New Zealand that pre-dated the ACE study with findings very similar. I offer mention of these in my book. So, like me, we're out of hiding - those of us who are seeking to understand why we are stricken with cancer, Lupus, and assorted auto-immune disorders. And if we are to take to task experts like Noel R. Rose, M.D., Ph.D.* who says:"A major aim of the American Autoimmune Related Disease Association is to help us to understand that all of these diseases, diverse as they are, in their anatomical location, in their clinical manifestation, are related because they have the same etiology; they are all caused by autoimmunity. In my opinion, the only way we're going to develop really effective treatments will be to treat the cause of the disease, not the symptoms. The symptoms are late; the symptoms are at the end of the train of events. We want to get on the train at the very beginning." W e want to get on the train at the very beginning. Yes we do, sir. Yes, we do. I must include one huge caveat here. Not all of us who have experienced childhood maltreatment in any form WILL develop adult physical or mental illness. There's just a high probability, now proven, that we can. This is a discussion that must continue and 'professional patients' like myself must bring this information to the fore when we visit our own medical caretakers and in magazine articles, speeches, and books like my own. To hear the podcast of the July 1, 2013 radio show entitled Safety First is Murphy's Law with Tracey Murphy, go to this link: http://www.blogtalkradio.com/soulsistaradio/2013/07/02/soulsistamonday--safety-first--murphys-law-wtracey-1The hosts of this program have invited me back Monday, July 8, 2013 - 8pm EST to continue our dialogue on this very important topic. It is a call-in program so I hope to 'meet' you there!
*Chairman Emeritus, AARDA, National Scientific Advisory Board; Professor of Pathology and of Molecular Microbiology and Immunology; Director, Center for Autoimmune Disease Research, Bloomberg School of Public Health, The Johns Hopkins University, Baltimore, MD
The simple 10 question ACE survey gives you your score. I'm a four which places me on the 'DISEASE MOST WANTED LIST' for having a much higher risk of developing adult physical or mental illness. This is what my book talks about and brings to light in a very personal story.
In the United States, 21 states are performing their own ACE studies since learning an astonishing 87 per cent of us score more than one on the survey. As the researchers explain, this startling statistic must not be addressed with a 'top down' approach but, rather, immediately upon establishing a relationship with a physician or medical practitioner who can help mitigate the results of childhood trauma.
To wit, "the ACE Study uncovered a stunning link between childhood trauma and the chronic diseases people develop as adults, as well as social and emotional problems," says the ACES Too High web site that is filled with never-before-seen research, study results, scads of information about the way those of us with ACE scores above "0" fare in this world.According to the contributors to the site "the first research results were published in 1998, followed by 57 other publications through 2011" that revealed:Childhood trauma was very common, even in employed white middle-class, college-educated people with great health insurance;There [is] a direct link between childhood trauma and adult onset of chronic disease, as well as depression, suicide, being violent and a victim of violence;More types of trauma increased the risk of health, social and emotional problems; andPeople usually experience more than one type of trauma – rarely is it only sex abuse or only verbal abuse.
According to my own research, I found studies in Australia and New Zealand that pre-dated the ACE study with findings very similar. I offer mention of these in my book. So, like me, we're out of hiding - those of us who are seeking to understand why we are stricken with cancer, Lupus, and assorted auto-immune disorders. And if we are to take to task experts like Noel R. Rose, M.D., Ph.D.* who says:"A major aim of the American Autoimmune Related Disease Association is to help us to understand that all of these diseases, diverse as they are, in their anatomical location, in their clinical manifestation, are related because they have the same etiology; they are all caused by autoimmunity. In my opinion, the only way we're going to develop really effective treatments will be to treat the cause of the disease, not the symptoms. The symptoms are late; the symptoms are at the end of the train of events. We want to get on the train at the very beginning." W e want to get on the train at the very beginning. Yes we do, sir. Yes, we do. I must include one huge caveat here. Not all of us who have experienced childhood maltreatment in any form WILL develop adult physical or mental illness. There's just a high probability, now proven, that we can. This is a discussion that must continue and 'professional patients' like myself must bring this information to the fore when we visit our own medical caretakers and in magazine articles, speeches, and books like my own. To hear the podcast of the July 1, 2013 radio show entitled Safety First is Murphy's Law with Tracey Murphy, go to this link: http://www.blogtalkradio.com/soulsistaradio/2013/07/02/soulsistamonday--safety-first--murphys-law-wtracey-1The hosts of this program have invited me back Monday, July 8, 2013 - 8pm EST to continue our dialogue on this very important topic. It is a call-in program so I hope to 'meet' you there!
*Chairman Emeritus, AARDA, National Scientific Advisory Board; Professor of Pathology and of Molecular Microbiology and Immunology; Director, Center for Autoimmune Disease Research, Bloomberg School of Public Health, The Johns Hopkins University, Baltimore, MD
