Every mother’s nightmare…

What has the United States become when we separate children from their parents? That is the question I ask myself today. I’ve tweeted about some appalling actions of the Trump Administration and the Republican-led House and Senate before–(like threatening people with cancer and/or disabilities/pre-existing conditions with no health insurance). I’ve been trying to curb my anxiety and despair at having a President that lies on a regular basis, would have an affair during his wife’s pregnancy and who thinks Putin and Kim Jong-un (murderers of thousands) are “great guys.”

Republican political strategist Steve Schmidt said on NPR June 17, 2018,

“Watching the Republican Party’s degeneracy, it’s cravenness. It’s moral rot and corruption. The embrace of pedophile candidates like Roy Moore, the fact that there are legitimate Nazis running under Republican banners in races across the country and the inability of, really, a single member to muster the courage to stand up and, with regard to Donald Trump’s illiberalism, to say, excuse me, sir, this is the United States of America is a tragedy in my view.”

Reaching a new low, the administration that has no moral compass is separating families. On Father’s Day, when Representatives were finally allowed to see and speak to detainees at the Immigration and Customs Enforcement detention facility in Elizabeth, N.J, they said,

“What we saw here today was heartbreaking. Parents are being held prisoner inside, literally crying to us to be reunited with their families,” the lawmakers said, in a statement, after the visit. “…Trump and Sessions say they are following laws. That is a lie. There are no laws requiring families to be ripped apart….Trump claims Democrats are to blame for families being broken up. That is a lie. Republicans control every branch of government.”

I’m calling on mothers around the country to do what I am doing. Take a stand. Write about this.

There’s a photo of a two year old girl being separated from her mother that has gone viral.  I remember my son at two. He was inconsolable at being separated from me. Any mother who sees this photo, thinks of their own children and realizes that these little ones are being “detained” and may be sent to “foster homes?” should be as outraged as I am.  To forcibly separate babies from moms and dads is extremely detrimental to these children’s health, both physical and mental, and to their safety.

 

 

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#HCHLITSS Chat Thursday February 26: Trends Redefining Healthcare This Year

An interesting article was posted over at Fortune.com last month. It discussed “5 trends that will redefine healthcare experience in 2015.”

http://fortune.com/2015/01/14/5-trends-that-will-redefine-your-healthcare-experience-in-2015/

None of these topic areas are brand new ideas. In fact, we’ve discussed several of them during previous #HCHLITSS chats. The idea here is that these areas are beginning to reach a critical mass such that they are beginning to impact the ways in which we deliver and purchase health care in such meaningful ways at both the individual and system level, their impact can no longer be overlooked. Take a look at these trends and be prepared tonight to tell us:

1) Which of these trends do you think has truly become/is becoming a new standard in the way care is delivered?
2) Which of these trends are still a fad/ their time has not yet come?
3) Which of these trends has the greatest impact on your life, your health?

From The Stars To The Turkey

thankfulness

Right after the Big Bang there was a long period of darkness with no stars–in fact, about 400 million years of darkness. Then clumps of hydrogen collapsed into the first stars and galaxies.

galaxiesIn the process of fusion, the stars produced helium and glowed, lighting the universe. As those stars aged, and nuclear fusion continued, they formed much heavier elements, like oxygen, nitrogen and carbon. As supernovas, some stars ejected these elements into the rest of space.

The universe was born 13.8 billion years ago and our solar system around 4.6 billion years ago. During the time between the two birthdays, many stars pushed out the building blocks of planets, atmospheres, other stars and life.

In fact, every one of us is made from the atoms created by those stars. “We’re made of star stuff,” Carl Sagan famously stated in an episode of “Cosmos.” Plants, earthriseapollo8animals and people are all connected through the stars and starlight.

This knowledge makes Albert Schweitzer’s quote even more compelling.

At times our own light goes out and is rekindled by a spark from another person. Each of us has cause to think with deep gratitude of those who have lighted the flame within us.

As we come together in Thanksgiving, let us remember our beginnings in the creation of light. Let us also thank others for the help they give us to rekindle our inner light and try our best to be the person who helps light the way for others.

Happy Thanksgiving.

The cardiac miracle cure? Vitamin C, lysine and Dr. W. Gifford-Jones

There are charlatans out there. Beware of Vitamin C and lysine and Dr. W. Gifford-Jones. See the post below from Carolyn Thomas of HeartSisters.

The Ethical Nag

It all started with a simple question from one of my blog readers at Heart Sisters.  Another heart attack survivor asked me if I’d heard about the use of high-dose vitamin C and lysineto prevent or reverse coronary artery disease, a treatment duo often touted in health food stores. It turns out that almost any Canadian who reads any daily newspaper across our great country has likely heard of these particular supplements, thanks to a syndicated health columnist named W. Gifford-Jones MD whose columns have been published in over 70 newspapers in Canada and beyond.

He’s a University of Toronto- and Harvard-trained MD and author whose bio also includes “family doctor, hotel doctor and ship’s surgeon”. (That’s not his real name, by the way – which is Ken Walker).  In one of his columns published in the Windsor Star in December, the 89-year old…

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Legacy of Love: Jayme’s Fund For Social Justice

In early 2013 I had the opportunity to work with a small non-profit in New Hampshire.  Working with the artwork of a young girl who died tragically, I got to know her mother, Caren.  Caren thought that she wanted to change the website she had had for the 10 years since her daughter’s death.   Unfortunately,  attempting to change the website was too great an emotional challenge for her.

I created this video for Jayme’s Fund for Social Justice as well as a prototype of a new website that can be seen here.

 

Beginnings and Endings

April 1st remembrance

Health Communications and Health Advocacy

“Often when you think you’re at the end of something, you’re at the beginning of something else.  I’ve felt that many times.  My hope for all of us is that “the miles we go before we sleep” will be filled with all the feelings that come from deep caring-delight, sadness, joy, wisdom-and that in all the endings of our life, we will be able to see the new beginnings.” Fred Rogers

I know it is hard to believe that a grown woman would feel so connected to “Mr. Rogers’ Neighborhood.”  Actually I wasn’t all that big a fan of it as I was growing up.  But I found its calm and quiet atmosphere a welcome relief from the programs that my boy and I could have watched together when he was little.

Today I turn to Mr. Rogers again.  April Fool’s Day 2012 was a day of lemons for my…

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Facepalm

Please look at the list of to-do’s in this blog post!

The Sarcastic Boob

You all know my feelings about Susan G. Komen (see my commentary here, here, and here).  And it has always been puzzling to me that a woman whose sister supposedly died of breast cancer that metastasized would establish an organization that hardly mentions it and funds research for it far less than other organizations.

Komen (as an organization) possesses an innate hubris and avarice that allows them to treat those who infringe on their copyright with very heavy hands.  It has over 200 trademarks all of which are watched over and protected by a well paid legal counsel. Komen thinks nothing of strong-arming charities for use of the words “for the cure.”  In 2010, Komen legal counsel, Jonathan Blum said

“It’s never our goal to shut down a nonprofit,” he said, “and we try very hard to be reasonable, but it’s still our obligation to make sure…

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Lumley’s Lucky Day

In second grade my son Daniel had an assignment, to write and illustrate a story. He was worried about it so we went to the North Carolina Zoo for inspiration. Daniel wanted to photograph the animals and borrowed Dad’s phone. At the alligators’ habitat, he leaned in to get a good picture and dropped the phone. He was devastated. We tried to comfort him and joke about what was happening in the alligator habitat. Lumley’s Lucky Day was born. Mom spent some time revising and creating illustrations in Adobe Photoshop and after a few years, Lumley’s Lucky Day has been published on Kindle. Please take a look and enjoy it! Share this with your friends.

2013 To 2014: Rekindle Another’s Spirit

In everyone’s life, at some time, our inner fire goes out.  It is then burst into flame by an encounter with another human being.  We should all be thankful for those people who rekindle the inner spirit.  ~Albert Schweitzer

Blogging for a company, Medivizor, and writing for the Health Communication, Health Literacy and Social Science Tweetchat #HCHLITSS website has kept me so busy that my own website has seemed adrift.  Yet life has rushed along…filled with helping our little family settle into a new place! A move from North Carolina to Massachusetts…Gosh,  I’m now listening to predictions of snow…at least 6 inches…and I feel fine!

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You can always tell a real friend:  when you’ve made a fool of yourself he doesn’t feel you’ve done a permanent job.  ~Laurence J. Peter

There have been some lonely times but my real friends have decided that I’m not such a fool as they may have thought, but never voiced.

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I never had a policy; I have just tried to do my very best each and every day.  ~Abraham Lincoln

This is all any of us can do…to do our very best and I think reaffirming this at the end of one year and the beginning of the other is an important ritual that I begin now.

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Education is the most powerful weapon which you can use to change the world. ~Nelson Mandela

I am ever excited by the idea of always being a student, asking questions and learning.  I believe that any effort I can make to educate others or to include them in my continuous “studenthood” is worthwhile.

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I learned that courage was not the absence of fear, but the triumph over it.  The brave man is not he who does not feel afraid, but he who conquers that fear. -Nelson Mandela

Fear is ever present for anyone who is looking for employment, or relocating, or caregiving or connecting with and/or loving others.  I pray that this coming year I can recognize fear and conquer it.

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Happy New Year 2014!

 

Halloween and Domestic Violence Awareness Month

vintage-costumes-1953Lesley Pratt Bannatyne, explains that Halloween has changed. Prior to the 1970s, costumes for this children’s holiday featured astronauts, doctors, firefighters and nurses, allowing children to dress as heroes or people they aspired to become. Or they were of clowns, cats and dogs.  Then in 1968, the movie industry cancelled the production code that stopped the use of obscene imagery. More and more graphic movies and more horror movies resulted including the 1978 release of the film Halloween. It was the first time that Halloween had been directly equated with horror cinema, says Bannatyne, and the association has stuck ever since.

After October 31st, Halloween, has come and gone, may be a perfect time to post on Domestic Violence Awareness Month. What does this celebration have to do with Domestic Violence Awareness? Why is there a need for awareness? Perhaps because we are often unaware that our neighbors, friends, family are living their daily lives in the fear and horror that Halloween seems to celebrate.

The Health Communication, Health Literacy and Social Sciences asked participants to share their insights on Domestic Violence.

Dr. Gia Sison thinks that “Awareness is key to having a major impact and long term effect on domestic violence. Along with awareness we need the victims to start speaking up, to empower them to make a stand against it “

Annete McKinnon, patient support advocate, believes this awareness month is needed because “Domestic Violence isn’t always evident. “ A friend was being physically abused and yet, “I believed my friend when she said she kept having accidents.” Andrew Lopez a nurse sees awareness of domestic violence as crucial, “Domestic Violence, Intimate Partner Violence is filling up Emergency Departments in a vicious cycle….Unless awareness is raised of Domestic Violence, the vicious cycle will repeat itself, over and over.”

One in five women are raped at some point in their lifetime; nearly half of women in the US experience sexual assault other than rape. Yet only 60% of domestic violence and intimate partner violence incidents are ever reported to the police.

“Here in the US, we have to make it safe for them to stand up, and they have to be heard and believed!” Darline Turner, physician assistant working with pregnant women, states. “I see reports all the time where partner violence is not taken as seriously because it happens within a relationship. “

Lopez agrees, “Yes, many suffer in silence, never reporting domestic violence, never getting the help they need. We can talk about filing Restraining Orders, pressing charges, but the risk of escalation is ever present. “

Dr. Sison confirms that, “it turns out to be a vicious cycle when the abuser is enabled and … the person being abused makes excuses for the abuser, enabling further abuse. By encouraging them to speak up, people help them go through recovery, then they can help prevent others from becoming victim.”

“Unless the victim comes forward and agrees to press charges,” Lopez said, “the hands of police and healthcare professionals are tied.” Yet Turner feels that it can be difficult to get the victim to act, with “the emotional abuse that typically accompanies the physical abuse. These women are really beaten down!

Once a victim is beaten down emotionally, its really hard to get them to speak up or even admit there is a problem.” “The head trips that often occur make the abused feel like its their fault, like they deserve it. That’s much of the shame.” Natrice Rese, patient advocate said, “ victims feel they brought it on themselves. [We] need to change that, empower.”

What is the impact of domestic violence on health?

recent study in Iowa found adults with 4 or more adverse experiences as a child to be more likely to have diabetes and heart disease! People who experience rape or stalking are more likely to report frequent headaches, chronic pain, difficulty sleeping, poor physical and mental health. The same Iowa study found abused adults are 4 times as likely to have obstructive pulmonary artery disease .

Lopez stated, ”it leaves long lasting, often permanent emotional scars.” Dr. Sison agrees, “Psychiatric health is very much affected leading to major depression in most cases.”

Turner descries the generational nature of domestic violence, Many kids who grow up in abusive homes grow up to abuse or be abused. Unfortunately, there are high rates of domestic violence against pregnant women.” Jen Romnes entered the chat to agree, “It impacts children. I am a child of domestic abuse. Colours my world view. Just finished memoir.”

Patricia Anderson, a librarian and domestic violence survivor advises, “Don’t pressure them or make them feel forced. [It] took me decades to write my story. I did not realize I was a battered wife until I’d been divorced a year. Your brain just doesn’t apply that context to your own life.” Anderson further explains, “Remember, it isn’t always PHYSICAL violence. There is sexual, economic, social, and emotional. Someone might think they are not a victim because the violence wasn’t physical.”

People who are abused experience a great deal of shame, Turner believes. “Somehow we have to impress upon the victims its not their fault. So much stems from “I should do, I should be better.” Lissanthea Taylor, a physical therapist said, “Shame needs silence to grow, shame correlates with so many other physical and mental health issues. [It’s important to] open a context for talking.”

RV Rikard, sociologist, brought up the salient point that men are also victims of domestic violence. In response, Turner relates her experience as a health care provider for a man, “I once treated a man who was being beaten by his wife. When I figured it out, he was mortified that I had found out and begged me not to say anything to anyone. He stopped coming to the office. I wonder what happened to him? Men are far less likely to disclose the abuse or report it. This is even worse in same sex couples.”

Among the 70% of women who experienced domestic violence and then told someone about it, more than 1/2 (58%) said no one helped them.

If over 1/2 of victims told someone and didn’t get help…what does that say about speaking up? Alisa Hughely replied, “ It say WE don’t know how to listen or we are not equipped to give effective help it’s our job as HP’s to meet people where they are at- not what we think they must do.” Yet Romnes points out, “It’s hard for victims of DV to get help. Not only is their safety at stake, but children’s safety too.”

Having been a victim of domestic violence Anderson is one of the people who does act to help. “I always had a reason to not tell. If no one asked, I wouldn’t tell. But who would ever ask. I was so lucky. Someone did listen, did help. Now that’s something I do. I always ask. I always follow up. And having been a victim, you can spot it easier. Educating needs to include how to spot victims and NOT become another abuser.”

Three out of four (73%) parents with children under the age of 18 said that they haven’t had a conversation about domestic violence with them. That is a dangerous strategy because approximately 9% of high school students report experiencing dating violence in the form of hitting, slapping, etc.

Lopez suggested a video for all women over the age of 13 called “Just Yell Fire.”

Compared to homes without guns, the presence of guns in home is associated with a 3-fold increased homicide risk within the home. Homicide risk is 20 times higher where previous domestic violence exists and there is a gun in the house and homicide risk connected to gun ownership increases to 8-fold when offender is an intimate partner or relative of the victim.

These are just numbers until it happens to someone you know. Anderson said, [My] “Friend had a friend with a restraining order against her ex. He showed up on her porch with a gun and killed her. Really distressing. My friend never got over it. Adding insult to injury, the killer only got five years in prison.” Romnes feels that there needs to be a change in expectations and increase the penalties for the abuser. “Flip the losses from the victim fleeing with just a shirt on her back to the abuser bearing the hardship. The abuse will stop if the abuser becomes controlled as penalty for acts of violence: flip the power imbalance.”

Many worry about the impact of domestic abuse on children. Those who are abused are equally concerned as Anderson notes, Anderson said, “I never ever hit my kids. Found other ways to discipline. They didn’t like them either. There are ways. I looked for mentors in good parenting, intentionally made friends with people in good marriages.”

Rikard shared a domestic violence and fathering intervention program .

What can we do to prevent domestic violence? “Keep talking, keep communication lines open, watch for signs,” Natrice said. “Awareness, awareness, awareness,” Dr. Sison advises.

What do we need? Not a holiday that celebrates scaring people with graphic and horrible costumes, masks and decorations, but an open discussion of the fears and horrors that are perpetrated every day on families, friends and loved ones by abusers.

To check out the quotes on Domestic Violence take a look at these links:

More work to do against domestic violence
http://www.ctpost.com/news/article/More-work-to-do-against-domestic-violence-4882569.php

Study Ties Early Trauma, Health Risks
http://www.desmoinesregister.com/article/20131014/NEWS/310140060/Register-Exclusive-Study-ties-early-trauma-health-risks?Frontpage&gcheck=1

http://www.ncjfcj.org/sites/default/files/DVAMFactSheet%202013.pdf

Asking the Hardest Questions

Jessica Rice is an amazing woman who asks the hard questions.

stage iv

This week I was honored to guest post for Scope, the blog published by Stanford Medicine. The original post appears here.

Since becoming ill, I’ve learned that I have the innate ability to make doctors very uncomfortable – squirmy, even. It’s surprising because I had assumed medical professionals with decades of experience have fielded every possible question a patient might ask.

But I suppose I’m not a typical patient. In November 2011, I was diagnosed with stage IV lung cancer (bronchioloalveolar carcinoma, a subset of adenocarcinoma) with extensive spread to the mediastinal and hilar lymph nodes. At the ripe old age of 30, I joined a very exclusive club of young, non-smoking women with this rare cancer.

My biopsies were immediately tested for genetic mutation and found to be ALK+. Crizotinib had received FDA approval a few months earlier, so it was the logical first course of action. The…

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Moms: You Are Not Alone

Lauren HaleLauren Hale (@unxpctdblessing)a two time postpartum mood disorder survivor who describes herself as having “turned peer supporter and  advocate for families struggling with Postpartum Mood Disorders [PMDs].”   She  also hosts #ppdchat  on Twitter for families struggling with PMDs.  She joined #hchlitss on March 1, 2012 to continue our discussion of mental health literacy.

What is PPD or Postpartum Mood Disorders? 

“A Postpartum Mood Disorder (PMD) is when a mother experiences psychological issues within 12 months of giving birth.  PMD issues can range from anxiety to depression to OCD [Obsessive Compulsive Disorder] to PTSD [Post-Traumatic Stress Disorder] or even to Psychosis, which is a medical emergency.”

One of the participants clarified that “PPD” specifically refers to “Post-Partum Depression.”

Does anyone have an understanding of the causes?

“Researchers are still working but many believe hormones are involved. [It’s]  not always the case.  [It’s] important to mention[that] thyroid issues, iron deficiency, and some vitamin deficiencies may simulate PPD symptoms.  [It is } important to rule out other causes before hopping on an anti-depressant.”

So is there any information out there that educates women about PPD?

There are several blogs, websites, and organizations doing wonderful work to educate women and providers.  Postpartum Support International is a great place to start. So is Postpartum Progress.

Peer support is a key component [to care] –[It] reduces[the] isolation in our struggle [which has a ] HUGE impact. “

A participant shared her “ favorite resource for info[rmation] and community regarding PPMDs is [Postpartum Progress] http://t.co/6wkvTaYF and #PPDChat [facilitated by Lauren]  is a hugely helpful resource in this area.”

Are medical providers uneducated about PPD/ PPMD?

“They can be – PPD/PMD is still not largely covered in medical training.  Also, peri-natal women see a large variation of providers which makes it difficult to narrow down education necessity.”

A participant noted that “It can also be really difficult to find a counselor/therapist who is knowledgeable [about] PPMD.”

Another participant shared that “family doctors are [need education].  [I] explained my symptoms,[my family doctor] never suggested beyond PPD and PPA [post-partum anxiety]. “

A third participant offered another example of her experience with a health care provider. “ I found it more harmful to see a counselor who was uneducated…than not to see one.  [They] blew PPD off.”

Yet another participant stated, “My PCP [primary care physician] would love more info on PMD, she says they are seeing more cases and have no information.”

In your opinion, what are the primary challenges women face regarding mental health literacy? 

“I feel the primary challenge with women and M[ental] H[ealth] Literacy lies with Stigma, particularly around birth.   I also think a large part lies in fear and the ‘just get over it’ mentality which permeates our culture.  Disappointment in how [the] birth went [and/or] traumatic birth can also factor into experiencing a PMD which leads to further stigma….”

“When you feel you have to suck it up and be “supermom,” things get worse.  [These are] definitely a few of the reasons women have trouble reaching out.   There are also (as with many) financial and insurance barriers to reaching out for help.”

A participant opined that “Stigma is the major problem for anyone with mental health issues.”

Another participant shared her experience.  “ The stigma expanded for me, as a Christian, with people saying crap like “Your faith is lacking” or “You need to pray more…. That sentence: “your faith is lacking,” is a key component in the downfall of my mental health and my marriage.   Lots of invalidation of feelings happens around birth and new motherhood.   If your experience is atypical, it’s confusing.”

Can you identify the challenges facing providers in dealing with moms?

Lauren answered, “Medicaid in most states only covers six to eight weeks post birth.   PPD typically occurs at two to three months.  One of the biggest [issues] – is not having a solid referral network set up in order to deal with moms who are struggling. Providers may also dismiss PMD symptoms as average “new mom” exhaustion. Providers need to dig deeper and don’t be afraid to ask questions if something feels off.”

One participant shared that, “There can be fear of CPS (Child Protective Services) being called, fear of job security, concerns for security clearance for military spouses.”

Another participant believes that,  “Friends/family members need to be targeted in education about PPMD …[They need to] not be afraid to ask questions and push new moms to get help.”

What are the warning signs? What do family and friends and new moms need to know?

Some of the signs are, “If a mom is not herself, sad and withdrawing, anxious, not wanting to be with [her] baby or is hyper-vigilant.”

Other signs include, “Psychosis [is the] most important to know – [if the mother is having] hallucinations, delusions, etc., [it is a] medical emergency, [and the mother should be taken to the] ER (Emergency Room) immediately.”

“Another important symptom is rage or anger.  [It is} Not listed [in] a lot of places, but MANY mothers experience it.  I think all parents worry about their children,  but ‘Intrusive thoughts’ are completely different and atrocious.  Intrusive thoughts are a component of Postpartum OCD, which is what I struggled with after my daughters.  My thoughts involved knives the first time around, suffocation, the second. [I] Became obsessive.

 “Yes, [the thoughts] can be very violent… and unprovoked.  With Postpartum OCD, though, a mother rarely acts on her intrusive thoughts.  She is immediately disgusted by them.  With Psychosis, however, these thoughts become logical and she is more likely to act on them.”

A participant offered a website address, “I also like Postpartum Progress Plain-Mama English’s list of symptoms, especially for new moms.  Plain-Mama English PPD/PPMD symptoms: http://t.co/RB0v8cF5.  PPD/PPMD can also feel like just not feeling anything. I felt numb a lot with mine.”

Lauren’s final thought was that, “It’s important for moms to know PPD/PMD is not something to be ashamed of…they’re not alone and there is help.”

No One is Alone in Anything

Hearing a diagnosis of “cancer” from your physician can be terrifying and isolating. Yet, Nancy Stordahl knows “no one is alone in anything.” And she’s been making sure of it by being there for others diagnosed with breast cancer.

That’s because she’s been through it, twice: once as a caregiver and then as a patient herself. “My mother was diagnosed in 2004, metastasized in 2007 and died in 2008. I was diagnosed in spring of 2010,” she says. The almost mechanical recitation of dates belies the emotional upheaval of the past nine years.

But Ms. Stordahl hasn’t kept quiet. She is part of the large and connected community of breast cancer bloggers that are sharing their stories on the blogosphere. She’s also the author of the book Getting Past the Fear: A Guide to Help You Mentally Prepare for Chemotherapy.

“I couldn’t find information I wanted to read about preparing. There isn’t much out there about getting your mind in the right place. Lots on side effects and such, but not the mind,” she discovered. “My ‘research’ was my personal experience. My book isn’t sciency, but personal…”

Ms. Stordahl wrote the book because of her own fears. “I wrote [the book] because I was terrified and overwhelmed before chemotherapy. First and foremost I wanted to help people get past the fear,” she says, “I wanted my book to be like talking with a friend who’s been there. It’s like a face-to-face chat.”

Ms. Stordahl knows a truism most don’t realize about chemotherapy: “Chemotherapy…makes illness very public to all.” With the loss of hair, comes a loss of privacy. It is there for all to see. “Chemotherapy…represents loss of control
Chemo is really tough to face. Admitting fear is hard to do, believe it or not,” she states. She recommends her book to family, caregivers and even health care providers.

DSCN96001To get a taste of Ms. Stordahl’s writing style, take a look at her blog Nancy’s Point. Unafraid to address real issues, it explores the experience of loss as well. “My book is much like my blog…personal and honest all the way…it’s how to connect best, I find.”

Although she states that she is not “sciency” Ms. Stordahl relates health information in a way that is approachable, especially when it comes to the genetic testing she and her mother went through. “I did genetic testing because my mother was BRCA2+ … found out 2 years after her diagnosis, sad to say,” she states. Being BRCA2+ means that she and her mother carried a genetic mutation that increased the risk for cancer. Ms. Stordahl calls her family history “complex” because, like so many families, the reasons ancestors died was not apparent. But she states, “I have a daughter and yes I would [recommend that she get tested], but it’s a very, very personal choice.”

Writing has been therapeutic for Ms. Stordahl, “It was a way for me not to implode!” she says. This new book author is looking ahead to her next book, one on her journey with genetic testing and BRCA+2 diagnosis. And she’ll keep going on her blog “Nancy’s Point” because it’s a “venue for advocacy” and an opportunity for special friendships. As she relates, “I count my blessings every day for my readers. I value every one of them. I really do.”

She sums up her message to others going through a cancer diagnosis this way, “There is no right way to do cancer. Your experience belongs to you.” And she adds reassuringly, “Don’t be afraid to admit your true feelings, fears, all of it. No one is alone in anything.”

A Few Health Funnies For 2013

1)kermit's md2)cartoon3)

sock joke

HAPPY NEW YEAR 2013!

Random Notes After Tragedy

1)  I haven’t brought myself to write about the horrible event in Connecticut.  We’ve kept our young one ignorant of what happened.

2)  I received this from a friend and felt I should post it….It is a direct quote.

ASAN Statement on Media Reports Regarding Newtown, CT Shooting
>December 14, 2012

“In response to recent media reports that the perpetrator of today’s shooting in Newton, Connecticut may have been diagnosed on the autism spectrum or with a psychiatric disability, the Autistic Self Advocacy Network (ASAN) issued the following statement today:
“Our hearts go out to the victims of today’s shooting massacre at Sandy Hook Elementary School in Newton, Connecticut and their families. Recent media reports have suggested that the perpetrator of this violence, Adam Lanza, may have been diagnosed with Asperger’s Syndrome, a diagnosis on the autism spectrum, or with another psychiatric disability. In either event, it is imperative that as we mourn the victims of this horrific tragedy that commentators and the media avoid drawing inappropriate and unfounded links between autism or other disabilities and violence. Autistic Americans and individuals with other disabilities are no more likely to commit violent crime than non-disabled people. In fact, people with disabilities of all kinds, including autism, are vastly more likely to be the victims of violent crime than the perpetrators. Should the shooter in today’s shooting prove to in fact be diagnosed on the autism spectrum or with another disability, the millions of Americans with disabilities should be no more implicated in his actions than the non-disabled population is responsible for those of non-disabled shooters.
“Today’s violence was the act of an individual. We urge media, government and community leaders to speak out against any effort to spuriously link the Autistic or broader disability community with violent crime. Autistic Americans and other groups of people with disabilities persist in facing discrimination and segregation in school, the workplace and the general community. In this terrible time, our society should not further stigmatize our community. As our great nation has so many times in the past, let us come together to both mourn those killed by acts of heinous murder and defend all parts of our country from the scourge of stigma and prejudice.”

>Media inquiries regarding this shooting may be directed to ASAN

3)  Are any of us unchanged by the loss of those innocents?  

4)  We need to limit the amount of ammunition that people possess.

5)  Automatic rifles should not be available to any civilian in the United States.

6)  More money should be going into our system of mental health.

7)  Health insurance should cover 100% of mental healthcare.  These are the systemic problems that need to be addressed.

Final thought:

8)  Media please…Leave the families alone….they need the chance to mourn.

This post gives people a terrific list of USEFUL things to do during Breast Cancer Awareness Month.

MBCNbuzz

by Holly Raby, guest blogger

Spoiler alert- I’m going to reveal one of the latest Facebook games going around!

In past years, women have been asked to update their Facebook status with their bra color, the location of their purse, and other odd statuses in the name of Breast Cancer Awareness.  One of this year’s versions is to post a heart as your status.

This is supposed to promote Breast Cancer awareness.  Can anyone tell me how, since one of the rules of the game is “if anyone asks you why you have a heart as your status, don’t tell them”?  What’s the point?  How does that spread awareness?  And besides, isn’t everyone already aware of Breast Cancer?

How about something more useful?  If you want to do something meaningful for October, do something that will actually help yourself or someone else.  Don’t settle for posting a heart and buying…

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‘Twas the Night Before Christmas in the Lawyer’s Offices

A variety of foot apparel, e.g. stocking, socks, etc., had been affixed by and around the chimney in said House in the hope and/or belief that St. Nick a/k/a/ St. Nicholas a/k/a/ Santa Claus (hereinafter “Claus”) would arrive at sometime thereafter.

The minor residents, i.e. the children, of the aforementioned House, were located in their individual beds and were engaged in nocturnal hallucinations, i.e. dreams, wherein vision of confectionery treats, including, but not limited to, candies, nuts and/or sugar plums, did dance, cavort and otherwise appear in said dreams.

Whereupon the party of the first part (sometimes hereinafter referred to as “I”), being the joint-owner in fee simple of the House with the parts of the second part (hereinafter “Mamma”), and said Mamma had retired for a sustained period of sleep. (At such time, the parties were clad in various forms of headgear, e.g. kerchief and cap.)

Suddenly, and without prior notice or warning, there did occur upon the unimproved real property adjacent and appurtent to said House, i.e. the lawn, a certain disruption of unknown nature, cause and/or circumstance. The party of the first part did immediately rush to a window in the House to investigate the cause of such disturbance.

At that time, the party of the first part did observe, with some degree of wonder and/or disbelief, a miniature sleigh (hereinafter the “Vehicle”) being pulled and/or drawn very rapidly through the air by approximately eight (8) reindeer. The driver of the Vehicle appeared to be and in fact was, the previously referenced Claus.

Said Claus was providing specific direction, instruction and guidance to the approximately eight (8) reindeer and specifically identified the animal co-conspirators by name: Dasher, Dancer, Prancer, Vixen, Comet, Cupid, Donder and Blitzen (hereinafter the “Deer”). (Upon information and belief, it is further asserted that an additional co-conspirator named Rudolph may have been involved.)

The party of the first part witnessed Claus, the Vehicle and the Deer intentionally and willfully trespass upon the roofs of several residences located adjacent to and in the vicinity of the House, and noted that the Vehicle was heavily laden with packages, toys and other items of unknown origin or nature. Suddenly, without prior invitation or permission, either express or implied, the Vehicle arrived at the House, and Claus entered said House via the chimney.

Said Claus was clad in a red fur suit, which was partially covered with residue from the chimney, and he carried a large sack containing a portion of the aforementioned packages, toys, and other unknown items. He was smoking what appeared to be tobacco in a small pipe in blatant violation of local ordinances and health regulations.

Claus did not speak, but immediately began to fill the stocking of the minor children, which hung adjacent to the chimney, with toys and other small gifts. (Said items did not, however, constitute “gifts” to said minor pursuant to the applicable provisions of the U.S. Tax Code.) Upon completion of such task, Claus touched the side of his nose and flew, rose and/or ascended up the chimney of the House to the roof where the Vehicle and Deer waited and/or served as “lookouts.” Claus immediately departed for an unknown destination.

However, prior to the departure of the Vehicle, Deer and Claus from said House, the party of the first part did hear Claus state and/or exclaim: “Merry Christmas to all and to all a good night!” Or words to that effect.

— Author Unknown

Taming the beast? Patient centered healthcare

In the US, do you know what is spent per person on healthcare?   In 2008 dollars, it was $7,538 per person (or per capita).  The country with the next highest spending is Norway with $5003  per capita.  US spending is 20% greater than any other country in the world and two times what is spent in European countries.The United States has one of the highest rates in health care spending growth.These are startling statistics.   So what are people in the US getting for their healthcare dollar? On “health indicators” like infant survival and life expectancy, the US ranks below other countries.  Why is this?  Well, for one thing, not everyone is insured in the US.  This means that many people put off screenings and other preventive care until it is too late…that will ratchet down life expectancy and ratchet up cost.   If moms- to- be don’t get prenatal care, their babies are more likely to be sickly and to die.  Again, an increase in infant mortality or increase in babies in neonatal intensive care…very expensive.  But are these the only reasons for the mismatch between spending and performance?  The National Institutes of Medicine (NIM) been grappling with this problem for a number of years and have clarified the dilemma.  According to the NIM, the two challenges are to assure that all have access to basic prevention and treatment and to ensure that all Americans receive the value for what is paid into the system.  Laying out these “fundamental healthcare challenges” facing the US  has been just the beginning.  Putting together a strategy for improvement has included recognizing the difficulty providers face keeping up with new interventions and strategies of care due to the rapid changes of the information age.  The strategy needs to take into account their difficulty discerning which services and what intensity of services are necessary or right for the patient. The answer is found in the idea of a “Learning Healthcare System.”  What is a Learning Healthcare System?  It’s a change in the healthcare paradigm.  It is also a way to make healthcare in the US “patient-centered.”   Instead of the provider controlling the information, information is shared among all the constituents.  In this paradigm the point of care is the “new knowledge engine.”  With the capacity of computers and networks, electronic health records are possible and sharing  information is easier.   Creating partnerships will be important, while maintaining security and privacy. Additionally, patient participation in their care will need to be enhanced and encouraged. Recent data from the RWJF website reveals that people in the US spend more time getting information on car buying than they do on choosing healthcare providers.  In choosing hospitals and physicians, half of all consumers relied on word of mouth recommendations from friends and relatives.  When choosing specialists and facilities for medical procedures, most consumers rely exclusively on physician referral.  Use of online provider information was low, ranging from 3 percent for consumers undergoing procedures, to 7 percent for consumers choosing new specialists to 11 percent for consumers choosing new primary care physicians.Communication between provider and consumer will be crucial, especially a willingness of all parties to learn.  Consumers will need to be engaged in the process. Of course, increasing health literacy (see previous blog entry) in the general population will be essential.The reality?  E-Health records are being created.   Now a repository and intermediary of research is being established with the Patient Centered Outcomes Research Institute (PCORI).   The PCORI website, refined the following definition of Patient Centered Outcomes Research. Patient Centered Outcomes Research (PCOR) helps people make informed health care decisions and allows their voice to be heard in assessing the value of health care options. This research answers patient-focused questions: 1.“Given my personal characteristics, conditions and preferences, what should I expect will happen to me?” “What are my options and what are the benefits and harms of those options?”3.“What can I do to improve the outcomes that are most important to me?”“How can the health care system improve my chances of achieving the outcomes I prefer?”To answer these questions, PCOR would: Assess the benefits and harms of preventive, diagnostic, therapeutic, or health delivery system interventions to inform decision making; highlight comparisons and outcomes that matter to people;Be inclusive of an individual’s preferences, autonomy and needs, focusing on outcomes that people notice and care about such as survival, function, symptoms, and health-related quality of life;Incorporate a wide variety of settings and diversity of participants to address individual differences and barriers to implementation and dissemination; and Investigate (or may investigate) optimizing outcomes while addressing the burden on individuals, resources, and other stakeholder perspectives.Increasing use of social media, provider and patient acceptance and participation  in e-Health records and information sharing, using effective health communication strategies,  all add to the excitement and opportunity for altering the US healthcare system from what is constantly referred to “unsustainable” to one that provides• The right care• To the right patient• At the right time For the right price.” (NIM, 2008)