PS-I know you are a big fan of Kohl's, but until they make things right with METAvivor, you'll have to stay out of the store.
Don't Ignore Stage IV.
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Monday, March 3, 2014
MOM AND ME AND HAPPY BIRTHDAY!
Happy Birthday, Mom!!! I Love You.
PS-I know you are a big fan of Kohl's, but until they make things right with METAvivor, you'll have to stay out of the store.
Don't Ignore Stage IV.
Like it? Share it!
PS-I know you are a big fan of Kohl's, but until they make things right with METAvivor, you'll have to stay out of the store.
Don't Ignore Stage IV.
Like it? Share it!
Wednesday, February 26, 2014
STILL HERE, STILL STANDING, STILL NOISY
My brain is always short-circuiting and yet, I have this amazing recall for certain things. But yes, I'm still here and still quite noisy even if the noise is more in the 3D world than it's been on this space or in the world of twitter. Or, the noise may be in my head, but it's there and I'm still standing. Sometimes, it's quite an effort and it requires the help of more than one person to keep me in a vertical position. I've been on a rocky path.
Months ago, or, more accurately, two years ago, I recalled a blog I read. It was my friend Renn who blogs at the Big C and Me. In her words:
"A virtual graveyard is not what I had in mind when I stepped into the design section of Blogger. But it is a brutal reality of breast cancer."
I can assure you, this blog began as a big joke about my zig zagging brain. I didn't expect it would lead me on a path of advocacy or would provide the means for me to learn about the importance of evidence based medicine. I could never have dreamed it would have taken me to some of the places I've been nor could I envision the number of relationships, solid relationships filled with respect, love, admiration and countless other things, that I've developed with so many people.
Likewise, little could I have known that I would circle back to matters of the brain when I decided it was time to lend my voice to the mental health arena for whatever bit of difference I might make.
Today, however, I once again find myself mourning. Not one, but two young women, each of whom has held a special place in my heart. Ten days ago, Acacia Warwick and Shelli Gibbons died. Yes, breast cancer.
To the ill-intentioned people who decided it would be a good idea to raise awareness about the plight of those with pancreatic cancer using a campaign where a pancreatic cancer patient is saying, "I wish I had breast cancer" I ask, REALLY? I'd like Jada, Acacia and Shelli to speak from their graves.
And then there's Kohl's and Katie Holms and a campaign that surely looks like a deliberate rip off of METAvivor's signature "Elephant in the pink room" campaign. Lori blogged about it along with several others. I'll be watching to see how that plays out. If I need to start a twit storm, I'll let you know.
I will write proper goodbye's to both Acacia and Shelli. My heart is once again shattered. Carolyn wrote a beautiful note about Shelli on her blog. Love for Acacia was shared on the Bradley University website.
I know Acacia nominated me for a WEGO Health award and despite my megaphone mouth, I get a bit embarrassed to be held in such high regard so I never mentioned the nominations. I'm very happy I saved a snapshot of the quotes on the nomination page. I was humbled when I saw them and today, I sit in tears as I look at them.
The good folks at WEGO are providing avenues and opportunities to have our voices included on many levels. I support their efforts. Here is the link to the nomination page. If Acacia took precious time from her shortened life to share her thoughts, I honor her efforts by sharing it here. Thank you, Acacia. I don't think I had the chance to offer a proper thanks in the commotion that has been part of my life over the past several months. And now, it's too late. And that makes me sad.
All that said, I'm thinking 2014 is not off to such a great start and we're already two months in. I'm not sure if it's social media as a whole or it's just my particular part of the planet but I kid you not when I say an exorcism is in order.
It's time for a breath of fresh air. My head is exploding with things and none of it is terribly pleasant.
Love you ALL..... every one of you.
Like it? Share it!
Months ago, or, more accurately, two years ago, I recalled a blog I read. It was my friend Renn who blogs at the Big C and Me. In her words:
"A virtual graveyard is not what I had in mind when I stepped into the design section of Blogger. But it is a brutal reality of breast cancer."
I can assure you, this blog began as a big joke about my zig zagging brain. I didn't expect it would lead me on a path of advocacy or would provide the means for me to learn about the importance of evidence based medicine. I could never have dreamed it would have taken me to some of the places I've been nor could I envision the number of relationships, solid relationships filled with respect, love, admiration and countless other things, that I've developed with so many people.
Likewise, little could I have known that I would circle back to matters of the brain when I decided it was time to lend my voice to the mental health arena for whatever bit of difference I might make.
Today, however, I once again find myself mourning. Not one, but two young women, each of whom has held a special place in my heart. Ten days ago, Acacia Warwick and Shelli Gibbons died. Yes, breast cancer.
To the ill-intentioned people who decided it would be a good idea to raise awareness about the plight of those with pancreatic cancer using a campaign where a pancreatic cancer patient is saying, "I wish I had breast cancer" I ask, REALLY? I'd like Jada, Acacia and Shelli to speak from their graves.
And then there's Kohl's and Katie Holms and a campaign that surely looks like a deliberate rip off of METAvivor's signature "Elephant in the pink room" campaign. Lori blogged about it along with several others. I'll be watching to see how that plays out. If I need to start a twit storm, I'll let you know.
I will write proper goodbye's to both Acacia and Shelli. My heart is once again shattered. Carolyn wrote a beautiful note about Shelli on her blog. Love for Acacia was shared on the Bradley University website.
I know Acacia nominated me for a WEGO Health award and despite my megaphone mouth, I get a bit embarrassed to be held in such high regard so I never mentioned the nominations. I'm very happy I saved a snapshot of the quotes on the nomination page. I was humbled when I saw them and today, I sit in tears as I look at them.
The good folks at WEGO are providing avenues and opportunities to have our voices included on many levels. I support their efforts. Here is the link to the nomination page. If Acacia took precious time from her shortened life to share her thoughts, I honor her efforts by sharing it here. Thank you, Acacia. I don't think I had the chance to offer a proper thanks in the commotion that has been part of my life over the past several months. And now, it's too late. And that makes me sad.
All that said, I'm thinking 2014 is not off to such a great start and we're already two months in. I'm not sure if it's social media as a whole or it's just my particular part of the planet but I kid you not when I say an exorcism is in order.
It's time for a breath of fresh air. My head is exploding with things and none of it is terribly pleasant.
Love you ALL..... every one of you.
Like it? Share it!
Thursday, February 20, 2014
C'MON @ValueOptions #Mental Illness IS NOT A CHOICE @HealthJoinIn @askAnthem ENOUGH.
I said it was coming and it's here. Another toe into the waters also known as the mental health care system. For today, specifically, it's about managed care and the behavioral health companies that supposedly manage the care. For a great article about the detriment of managed care with issues surrounding mental health, Todd Essig wrote a superb piece for Forbes in August of 2012.
In other words, a stacked deck. In fact, we, the consumers, don't even get a card to hold, except of course, a worthless insurance ID card. For those who recall my recent issues with my medications, this is not about Health Republic. I'm still a fan.
The is about Blue Cross. Or as it's called in NYS, Empire Blue Cross Blue Shield. If I've gotten all of my facts correct, it's all part of Anthem. And if I've gotten the rest of my facts straight as it pertains to mental illness, just like medication management is outsourced, "behavioral health" is also outsourced. It would appear their chosen management company is Value Options.
Let's start with the terminology, shall we? Behavioral health?? Seriously?? I looked up the definition of behavior and all of its forms. Technically, mental illness could be classified as behavior within the broadest terms but to me, behavior is something about which we have a choice, something we might control, something we might learn or unlearn.
It is from that personal framework that I make this statement:
MENTAL ILLNESS IS NOT A BEHAVIORAL HEALTH ISSUE. IT'S A DISEASE OF AN ORGAN. SPECIFICALLY, THE BRAIN.
I challenge anyone to debate the issue. Any day, any where.
And now, the story. My first steps into the world of mental health advocacy.
A thought disorder was diagnosed. Thought disorder sounds so much better than the language currently in use.
Schizophrenia.
Instant stigma.
I'm learning much and I'm learning quickly. I'll spare you the facts and figures. I'll spare you the textbook version of how to achieve the best possible outcome when a person is diagnosed with a thought disorder. I'll simply say that the diagnosis generally follows a psychotic break. A person may be hearing voices or chatter in their head but not all thought disorders involve voices. At the most basic level, schizophrenia, a thought disorder, is a pattern of disorganized thinking. The disorganized thinking is debilitating unless it is properly treated. In some cases, people can go on to pursue careers in law, education, research. In other cases, the stress is too much under which circumstances, a more relaxed career path is necessary. In still other cases, work is simply not possible. (And in those cases, that does not mean, unfulfilled lives. There are other opportunities but that's for another day.)
Here's the thing. This is not a behavior that can be worked on by the individual afflicted with the thought disorder. It requires a team of professionals. Medication management and tweaking of meds is key. CBT and in some cases, even DBT may be used. Group therapy and individual therapy are still another part of the treatment protocol. And here's the other thing, for someone to have any chance at a so-called normal life, this type of care doesn't follow a specific timetable. Every brain is different, the treatment of these diseases is fluid, and it appears every component of the aforementioned care affords the best chance for that so called "normal life." Not one or two. This isn't a Chinese menu.
Unlike cancer, where there is a specific set of NCCN guidelines which, for the most part, are accepted as standard of care and employed in treatment, there's nothing but a murky mess when it comes to mental illness. For today, I'm sticking with just one mental illness, thought disorders. There are mood disorders, personality disorders and who knows what else. The big ones seem to be bipolar disorder, major depressive disorder and schizophrenia. These are umbrella terms and just like cancer can be Stage I through Stage 4, the severity of any mental illness falls under a spectrum.
To make matters worse, many symptoms are similar. Because of symptom overlap, it can take time for a good psychiatrist to peel away the layers and make an accurate diagnosis. The diagnosis guides the treatment. The importance of a correct diagnosis can not be overstated.
That's my second grade analysis of a highly complex issue. Since I'm new to all of this and I don't proclaim to understand too much of anything, rather than misspeak or come across as a know it all who is really an idiot, I'm keeping it as simple as possible.
The diagnosis is a thought disorder. Now what? Here's what........ coverage for care under our health insurance policies is handed off to the behavioral health management contractor to determine what level of care is appropriate, to provide prior authorization, from a desk a gazillion miles away, based upon the clinical evaluation of the doctors who are looking at the actual patient, ultimately, to say, "Sorry, THAT may be the best care, but THIS is where you have to go because THIS is one of our chosen facilities." AND, that presumes they even approve the care to begin with. A big presumption and one that we are often forced to fight for.
To add insult to injury, despite mental health parity laws, most of those laws don't apply to all (many, most) policies so treatment is generally restricted to 30 sessions with a psychiatrist and a therapist (combined) and if hospitalization is necessary, 30 days and out. Those are the annual limits. If you start the year off poorly, you'd better get your act together by March or April because the "benefits" are exhausted until the following January. IF you even have insurance, again another day for that part of the story.
Let me just say this. This System Sucks. It sucks: not a little bit, not somewhat, not a lot. The ENTIRE system sucks. Entirely.
My personal beef today? A NYS Empire Blue Cross policy is in effect. It has all of those stipulations and it has one extra just to make the situation a bit more impossible. As if that were even possible but alas..... Since the policy is a NY policy, treatment can only be in a NEW YORK facility. Empire is part of Anthem and Anthem has a national network of facilities. If there is no appropriate facility in the network within the state, technically, an appropriate facility either completely out of network or within their network but outside of the state should be made available for appropriate care. At least, that was the bill of goods that was sold along with this particular non ACA but ACA compliant policy.
Yeah. Good luck with that. New York, particularly Long Island, is a NIMBY area. Not In My Back Yard. Anything having to do with treatment for the the mentally ill, the attitude? Take it elsewhere. The closest appropriate facility, in this case, is in Connecticut. To be precise, Danbury, CT which is about 5 miles from the NY border and ten miles from the town of Brewster in NY where this is all playing out. Can't cross the state line even thought the Danbury facility is IN the Value Options network and there is nothing comparable to afford proper care. And, a quick wiki search reads as follows: Danbury is located within the NYC Metropolitan area. Add that to the list of "it's a felony if you cross state lines" .... being mentally ill ... the latest felony.
Yes, I've done my homework on the benefits and I'm ready to throw down for a fight. But, I find it horribly distasteful that I should have to be involved in this battle at all. It's a disgrace. It's appalling. It's disgusting. And, with HIPAA, unless the mentally ill cardholder has signed the necessary permission forms, those of us whose thoughts are (mostly) not disordered, can't even fight on their behalf. AGAIN, another day for yet another obstacle. Along with this for another day: Most of those with mental illnesses find themselves in jail, or homeless or if they are lucky enough, they have an endless well of money from which to draw for treatment.
Shame on Anthem, shame on Value Care, shame on every person who cries NIMBY, shame on us as a supposed civilized country when we are incapable of taking care of those among us who need it most.
Today, I hang my head in shame because I'm one little voice and there aren't enough little voices to band together and be that BIG voice demanding to be heard, demanding change. I will continue to use my little voice because it's the right thing to do.
THIS is something I will see change.
The stigma stops here.
PS:
Note to Value Care: For REAL, how can you post guidelines written in 2004 as the provider reference for treatment?? Reviewed in 2011 and again in 2013. By WHOM?? Do those guidelines contain ANY of the research published over the past 13 YEARS?
Note to everyone else: Who knows a better word for "Disgusted" because that really isn't capturing my feelings or even scratching the surface......
Like it? Share it!
In other words, a stacked deck. In fact, we, the consumers, don't even get a card to hold, except of course, a worthless insurance ID card. For those who recall my recent issues with my medications, this is not about Health Republic. I'm still a fan.
The is about Blue Cross. Or as it's called in NYS, Empire Blue Cross Blue Shield. If I've gotten all of my facts correct, it's all part of Anthem. And if I've gotten the rest of my facts straight as it pertains to mental illness, just like medication management is outsourced, "behavioral health" is also outsourced. It would appear their chosen management company is Value Options.
Let's start with the terminology, shall we? Behavioral health?? Seriously?? I looked up the definition of behavior and all of its forms. Technically, mental illness could be classified as behavior within the broadest terms but to me, behavior is something about which we have a choice, something we might control, something we might learn or unlearn.
It is from that personal framework that I make this statement:
MENTAL ILLNESS IS NOT A BEHAVIORAL HEALTH ISSUE. IT'S A DISEASE OF AN ORGAN. SPECIFICALLY, THE BRAIN.
I challenge anyone to debate the issue. Any day, any where.
And now, the story. My first steps into the world of mental health advocacy.
A thought disorder was diagnosed. Thought disorder sounds so much better than the language currently in use.
Schizophrenia.
Instant stigma.
I'm learning much and I'm learning quickly. I'll spare you the facts and figures. I'll spare you the textbook version of how to achieve the best possible outcome when a person is diagnosed with a thought disorder. I'll simply say that the diagnosis generally follows a psychotic break. A person may be hearing voices or chatter in their head but not all thought disorders involve voices. At the most basic level, schizophrenia, a thought disorder, is a pattern of disorganized thinking. The disorganized thinking is debilitating unless it is properly treated. In some cases, people can go on to pursue careers in law, education, research. In other cases, the stress is too much under which circumstances, a more relaxed career path is necessary. In still other cases, work is simply not possible. (And in those cases, that does not mean, unfulfilled lives. There are other opportunities but that's for another day.)
Here's the thing. This is not a behavior that can be worked on by the individual afflicted with the thought disorder. It requires a team of professionals. Medication management and tweaking of meds is key. CBT and in some cases, even DBT may be used. Group therapy and individual therapy are still another part of the treatment protocol. And here's the other thing, for someone to have any chance at a so-called normal life, this type of care doesn't follow a specific timetable. Every brain is different, the treatment of these diseases is fluid, and it appears every component of the aforementioned care affords the best chance for that so called "normal life." Not one or two. This isn't a Chinese menu.
Unlike cancer, where there is a specific set of NCCN guidelines which, for the most part, are accepted as standard of care and employed in treatment, there's nothing but a murky mess when it comes to mental illness. For today, I'm sticking with just one mental illness, thought disorders. There are mood disorders, personality disorders and who knows what else. The big ones seem to be bipolar disorder, major depressive disorder and schizophrenia. These are umbrella terms and just like cancer can be Stage I through Stage 4, the severity of any mental illness falls under a spectrum.
To make matters worse, many symptoms are similar. Because of symptom overlap, it can take time for a good psychiatrist to peel away the layers and make an accurate diagnosis. The diagnosis guides the treatment. The importance of a correct diagnosis can not be overstated.
That's my second grade analysis of a highly complex issue. Since I'm new to all of this and I don't proclaim to understand too much of anything, rather than misspeak or come across as a know it all who is really an idiot, I'm keeping it as simple as possible.
The diagnosis is a thought disorder. Now what? Here's what........ coverage for care under our health insurance policies is handed off to the behavioral health management contractor to determine what level of care is appropriate, to provide prior authorization, from a desk a gazillion miles away, based upon the clinical evaluation of the doctors who are looking at the actual patient, ultimately, to say, "Sorry, THAT may be the best care, but THIS is where you have to go because THIS is one of our chosen facilities." AND, that presumes they even approve the care to begin with. A big presumption and one that we are often forced to fight for.
To add insult to injury, despite mental health parity laws, most of those laws don't apply to all (many, most) policies so treatment is generally restricted to 30 sessions with a psychiatrist and a therapist (combined) and if hospitalization is necessary, 30 days and out. Those are the annual limits. If you start the year off poorly, you'd better get your act together by March or April because the "benefits" are exhausted until the following January. IF you even have insurance, again another day for that part of the story.
Let me just say this. This System Sucks. It sucks: not a little bit, not somewhat, not a lot. The ENTIRE system sucks. Entirely.
My personal beef today? A NYS Empire Blue Cross policy is in effect. It has all of those stipulations and it has one extra just to make the situation a bit more impossible. As if that were even possible but alas..... Since the policy is a NY policy, treatment can only be in a NEW YORK facility. Empire is part of Anthem and Anthem has a national network of facilities. If there is no appropriate facility in the network within the state, technically, an appropriate facility either completely out of network or within their network but outside of the state should be made available for appropriate care. At least, that was the bill of goods that was sold along with this particular non ACA but ACA compliant policy.
Yeah. Good luck with that. New York, particularly Long Island, is a NIMBY area. Not In My Back Yard. Anything having to do with treatment for the the mentally ill, the attitude? Take it elsewhere. The closest appropriate facility, in this case, is in Connecticut. To be precise, Danbury, CT which is about 5 miles from the NY border and ten miles from the town of Brewster in NY where this is all playing out. Can't cross the state line even thought the Danbury facility is IN the Value Options network and there is nothing comparable to afford proper care. And, a quick wiki search reads as follows: Danbury is located within the NYC Metropolitan area. Add that to the list of "it's a felony if you cross state lines" .... being mentally ill ... the latest felony.
Yes, I've done my homework on the benefits and I'm ready to throw down for a fight. But, I find it horribly distasteful that I should have to be involved in this battle at all. It's a disgrace. It's appalling. It's disgusting. And, with HIPAA, unless the mentally ill cardholder has signed the necessary permission forms, those of us whose thoughts are (mostly) not disordered, can't even fight on their behalf. AGAIN, another day for yet another obstacle. Along with this for another day: Most of those with mental illnesses find themselves in jail, or homeless or if they are lucky enough, they have an endless well of money from which to draw for treatment.
Shame on Anthem, shame on Value Care, shame on every person who cries NIMBY, shame on us as a supposed civilized country when we are incapable of taking care of those among us who need it most.
Today, I hang my head in shame because I'm one little voice and there aren't enough little voices to band together and be that BIG voice demanding to be heard, demanding change. I will continue to use my little voice because it's the right thing to do.
THIS is something I will see change.
The stigma stops here.
PS:
Note to Value Care: For REAL, how can you post guidelines written in 2004 as the provider reference for treatment?? Reviewed in 2011 and again in 2013. By WHOM?? Do those guidelines contain ANY of the research published over the past 13 YEARS?
Note to everyone else: Who knows a better word for "Disgusted" because that really isn't capturing my feelings or even scratching the surface......
Like it? Share it!
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