An Infographic - A Visual Tool - to grab the attention of the Medical Team

Background:  After getting nowhere for a year, as I brought my family member (FM) to the ER and/or a local Crisis Center to be admitted (but FM summarily was discharged multiple times over my objections as the  Court Appointed Legal Guardian) in my attempts to grab the attention of doctors/psychiatrists of a local psychiatric wing of a hospital/crisis center, and even after, a year ago next month, arranging a consultation for the psychiatrists with one of the world's foremost researchers on anorexia - and getting a rejection of the opportunity -, and while continuing to watch my family member's weight slowly drop to a red flag danger zone, I resorted this past Spring to something that my son taught me.

Infographic Visual Tool:  My son is an expert in the communication of information through Infographics and I have observed that these tools work quite well. I plotted my family member's weight over a year's time, beginning in June of 2018, and presented the resulting chart during a team meeting at the hospital in May of this year. 

I thought I would share this idea in case someone else needs a visual to drive home a point. I used Excel to develop the infographic, plotting weight on the vertical axis and dates on the horizontal axis over the previous year to date.  The infographic also includes a few recent admit and discharge data points. It's a powerful visual and I recently learned that the message provided by the infographic was written into the official medical record!!!  Perhaps this kind of information would also be useful to gain support from the individual's Insurance Company.

[Obviously other factors were taken into account when FM was finally admitted in May for a longer stay because her weight was frighteningly low (low 70's) but even then, the remark of the ER physician was "she is awfully thin" [pause for several exclamation points !!!!!!!] but she otherwise noted that all her labs came back normal (meaning electrolytes) and then said the recommendation was to discharge FM.  My response was, long story short, to say "...she is dying and she will die if you do that...."]

In summary, the infographic reflects FM was discharged more than a year ago with a weight of just under 100 pounds but as time went on into the summer, fall and winter, as has always been the case because she has never been fully in recovery, her weight dropped, came back up a little, dropped more, came back up a little, dropped significantly, etc., etc.  In May 2019, FM was discharged at her insistence (Anorexia took over) at a ridiculously low weight only to drop again enough in two weeks to be rehospitalized. FM was admitted for another almost three weeks but again, at her insistence at a weight that was at least 20 pounds under a reasonable goal based on so much documentation and the recommendation of her PCP, FM was discharged again.    The decline, unfortunately, as I write this, is repeating.

Closing:  I am so grateful to Dr. Bulik et al whose research results have recently been published in an article written by @Sumathi Reddy the Wall Street Journal titled "A New Genetic Explanation for Anorexia" (see link) including findings on the genetic metabolic and psychiatric links, as well as to others who continue to push for a stabilized (ie for several weeks if not months) weight before assuming a person is safely into a recovery phase allowing for outpatient treatment.  Maybe, someday, doctors will receive more than 1-5 hours on eating disorders during their medical training.

What Is Being Done for Those Whose Eating Disorders are Entrenched?

[I originally changed the title of this to Part 1 because I've been adding material to this piece after I published it to my blog.  However, rather than create Part 2 to discuss what I have learned, am learning, hope to learn about the treatment of those with entrenched eating disorders, I decided to post a separate blog report about the Third Annual Conference of the California San Diego Eating Disorder Center that was held in La Jolla, Callifornia on February 25-28, 2016.  Access the first in a series of eventually three parts here.]

Much important and so necessary attention has been directed towards diagnosis and treatment of adolescents and even youngsters under the age of 10.  I'm a huge supporter of the work being done by so many around the country to get legislation passed nationally and state by state to make certain that eating disorders are legally recognized illnesses the treatment of which should be covered by health insurance to the same extent as other illnesses such as cancer, tuberculosis, multiple sclerosis, arthritis and so forth - including, for example, on-going visits and tune-ups.  I've tried to be active locally in our state, as well. And, of course, I've continued with my blog although I, too, have struggled with burnout. Bottom line:  the sooner the illness is addressed, the better.

Having an adult family member with a long term and entrenched eating disorder has led me on a protracted search to find help for her and to call attention to those who work with her that a different more comprehensive approach is needed.  Sometimes I've felt like I'm hitting my head against a wall because so often her treatment providers have turned to the list of her co-morbidities and tried to address those independently because over time nothing else has seemed to work.  These days attention is being paid, importantly, to her state of physical health and status; however, not much other progress is being made. 

However, as I've also noted in posts on my blog, how to approach and treat an adult with a newly diagnosed or an ongoing eating disorder is not well understood.  I've highlighted the relevant articles in the first subject in my site's Index - "Adult eating disorders and recovery tools" that the reader will find on the right side of my website.   I've offered suggestions of some things that have seemed to make a difference like the establishment of a team and the inclusion of a recovery coach.  I've noted that any patient and especially an adult in outpatient treatment must have a cohesive treatment team; not one that is fragmented.  The question of how to therapeutically approach the treatment of an adult with an entrenched eating disorder accompanied by other diagnoses, especially by what is called Borderline Personality Disorder (a misnomer and more appropriately defined as emotional dysregulation), remains elusive.  

Currently I am reading The Biology of Desire - Why Addiction Is Not A Disease by Marc Lewis, PhD (Public Affairs, a member of the Perseus Books Group, 2015).  As readers of my blog know, I believe (speaking as one who recovered from a 15 year bout with bulimia/anorexia) that eating disorders are brain disorders.  From that basic point I think that it is the thought patterns and therefore behaviors associated with eating disorders that become addictions and from there, as discussed by Dr. Lewis in his book, compulsions. I believe as Dr. Lewis does that there is hope.  One possibility is that which he discusses on pp 214-5 - involving Reach Out for Recovery and the city of Birmingham in the UK - effecting change by having resources at the ready and known to the person (and/or his/her family) with an addiction when the person finally has had enough and wants to change.   He refers to this as a "developmental approach."  He notes on page 213, and again I refer back to Kathryn Hansen's book Brain Over Binge, "....What will work best is whatever is available when the synaptic avenues of desire make contact with brain regions responsible for prospective change....Quitting requires a merger, perhaps a collision, between desire and perspective - again, what fires together wires together...."  Whether this experiment in the UK can be applied to those with eating disorders is another question. Incorporating and involving  community resources such as Smart Recovery, AA, and eating disorder support groups or even local chapters of eating disorders associations would be a good first step. 

Recently, I was deeply moved to read the first in a series of articles written by Jeanene Harlick.  These past few days, because of a discussion around an article that struck me as as much a statement about how eating disorders affect family members as it is about how to respond to as well as how to find appropriate treatment for those diagnosed, I've gone to Ms. Harlick's website:  www.adisorderedworld.com  to re-read her first piece and to read the second, as well.

Her first piece, "The Eating Disorders "Residential Treatment Industrial Complex": Harm or Help? Part 1 of an Investigative Series," not only recounts her experiences through the years in treatment but also, and so importantly,  underscores the fact that treatment for older individuals whose eating disorders are entrenched is terribly lacking.   I've read her first piece twice now and the similarities to my family member's experiences and accounts are truly heartbreaking although my family member has often said that certain aspects of her treatment like someone sitting with her while eating and monitoring her after eating were very important to help her break the ferocity of her bulimia.  The term non-compliant has been especially jarring knowing how much my family member's self has wanted recovery.

At the same time, Ms. Harlick's article is encouraging because through interviews with some of the top researchers in the field, she reveals that they are starting to turn their attention to this thorny issue.  I am particularly encouraged by the knowledge that Dr. Cynthia Bulik is investigating other approaches similar to what has seemed to work better for my own family member - person-centered or an individual approach to treatment.   However, finding someone with the patience to continue to work with my family member has been difficult.  At one point, a couple of years ago, almost her entire team quit on her.  She was shocked and demoralized.  Fortunately, three members of that original team have stood by her but the question remains, how to assist her into recovery she seeks when the illness within her rejects help offered?

Ms. Harlick also draws attention in her first piece to the Residential Eating Disorders Consortium and the Commission on Accreditation of Rehabilitation Facilities (CARF).  As she notes, "CARF eating disorder accreditation requires, among other things, that programs provide only evidence-based care - including, for adults, the forms of therapy proven effective in Touyz et al studies that employ staff with higher levels of specialty training and experience, and pay greater attention to clients' unique needs and history as well as socio-economic circumstances, career goals and quality of life."  [Note that the link to the article by Stephen Touyz and Phillipa Hay indicates "Open Access."  I hope this status continues for this piece is incredibly important.]  The guidelines also call for "....more cooperative, collaborative treatment plans."  She also notes that "....so far only six programs have obtained the CARF eating disorder accreditation."  This is encouraging, actually.

She closes with personal comments that I have heard from my family member, too.  I know that my family member craves recovery because she continues to say so.  She also gets hungry and she also tries to eat but then purges when she is overwhelmed by how she feels inside.    My family member also dwells on so many of what others have called her failures.  As she has commented, "...why try again when I know I will fail?" I believe it's not the individual who has failed, but the treatment approach. 

Ms. Harlick's second article, "Buyer Beware - Behind the Smoke and Mirrors: How Residential Treatment is Being Sold as 'First-Line' Treatment for Severe Eating Disorders Despite Research Backing; The Problematic Variation in State Licensing Standards and Oversight Across States; and Whether Accreditation is Really a Remedy to the Lack of Quality Control" takes a look at, among the issues listed in the title, one of the points (re data) among the five raised by Dr. Russell Marx in his opening remarks at the start of the 2010 NEDA Conference I attended in New York City.  

Regarding the issue of data and data standards, these  are wrestled with in many fields globally.  I am somewhat familiar with the issue of data standards because of my husband's work at the Critical Path Institute.  I refer you to, for example, the Austin-based outfit CDISC  with which C-Path collaborates.   Collection of accurate data and the development of uniform data standards is definitely needed within the eating disorders treatment world.

However, much progress is being made and as I heard years ago during a presentation, it's important to "keep your eyes on the prize."     As Ms. Harlick points out in her second essay, the population of those diagnosed with eating disorders is small; those who reach partial recovery is smaller and of those who are entrenched is smaller still.    I believe it's critically important to ferret out what works from what doesn't and to continue to push for early diagnosis and treatment so that fewer and fewer individuals (few already) become entrenched and more go on to recovery earlier and solidly.  One of the ways we can work together to make this happen is through legislation like that mentioned in my previous post.

There will be those naysayers who will latch on to anything that will defeat this legislation.  We must work together to publicize what does work so that anyone diagnosed can receive early diagnosis and treatment that is covered by insurance.

What about HIPAA and How to Overcome Barriers

In the process of being revised.  3/29/19

The basic information about HIPAA can be found at the following links:
Here is a link to the latest information about HIPAA as it applies to individuals and family members seeking health information.  There is a FAQ link, as well.  Specifically, here is a link for family members.

Here is a link for personal representatives.

Here is a link to a FAQ fact sheet for individuals.

Yet, see below for exceptions.  Know these exceptions.  Know that you have the right to communicate information to your loved one's doctor(s), therapist(s), nutritionist, and psychiatrist, etc.  HIPAA does not prevent you from politely calling/contacting them, noting (especially if a Request for Information has not been signed) that you realize they cannot reveal if they are treating your loved one but you are requesting that they listen to what you are offering about your loved one's behavior, their health, and so forth.  A best practice on your part would be to tell your loved one you are doing this.  

[As many of my readers know, I often comment about articles and/or provide commentary by others when the opportunity arises.  A helpful article appeared in the NAMI Advocate but the link seems to have changed.  I am currently researching the latest links on this topic.]

By now many families with adult children (or soon to be adult children) who are struggling with a diagnosis of an eating disorder and/or a co-existing mental illness have heard of HIPAA - the Health Insurance Portability and Accountability Act.  Undoubtedly, you know about it because any visit to a health care provider by you or a family member includes the requirement that you read and sign a document noting that you understand what the provisions mean.  If your loved one is a minor, you will be included in the conversation but not necessarily included in sessions so your loved one's therapist can build a therapeutic alliance or relationship.

In fact, all too often since this Act came into existence health care providers (physicians, therapists, psychiatrists and others) believe they must not communicate at all with members of an adult person's family unless a release has been signed by the patient; and the term "communication" includes the family providing information it feels is critical for the provider to know.

A groundswell of resistance and objection is building.  There are situations when HIPAA can be bypassed.

This topic was raised during the recent (March 17, 2019) F.E.A.S.T. of Knowledge conference in New York City and it appears that a task force will be formed to investigate and lobby our legislators about this topic.

Here is the latest update found on the NAMI site (2018) re health information sharing.

The Winter 2014 NAMI Advocate  included an article by Stewart Newman, M.D. and G. Ness Matthew Gabay, J.D. titled Understanding HIPAA:  Individual Privacy and Family Communication.  (pp. 20-21)

The authors provided the news that Rep. Tim Murphy (R-PA) "....introduced a bill in Congress that would make families the legal personal representatives of those they care for, so that providers are free to communicate with or without [italics mine] a release of information." (p. 20)

All to often, as I and many others have discovered, many providers refuse to communicate with family members even if the conditions are appropriate.  The authors refer to this as a "culture of silence." They state, and I emphasize in bold, "engaging the family is a therapeutic best practice."  

Providers instead think they cannot and should not communicate at all with family members.  This needs to change and in some cases is incorrect already.

What those of us with family members struggling with eating disorders or mental illness have come to understand is that the adult with a biological brain disorder all too often isolates, will not reveal that they are suffering (to the point of having suicidal thoughts), and sometimes ultimately in despair will try or succeed to take their own life or lives of others. 

Those of us with ill adult family members often are faced with an individual who refuses a recommendation that they seek inpatient or residential care.  I addressed the concept of an outpatient "team" in a previous post and provide a link here.  The bottom line, though, is that all the team members must communicate to be effective providers of care for their client. 

And again, "engaging the family is a therapeutic best practice." 

The authors quote Tom Insel, Director of the National Institutes of Mental Health - "If you look at those things that help to build resilience ... one of the best is simply getting families involved."  Indeed,  the National Alliance on Mental Illness (we have a NAMI chapter here in Tucson and many communities do as well), has been a long-time supporter of family involvement as evidenced by  Family to Family, Back to Basics and other programs offered.  I attended the Family to Family program and "graduated" with a huge amount of information to help me advocate for my loved one and understand her illness and the illnesses of others better.  Check with your local chapter if it offers this class.

So, why is it so darned difficult to break through the walls?

In response to that question, NAMI Oregon - a fantastically active state organization if one looks through all the achievements listed on its website created a Checklist for Parents and Families of People Living With Mental Illness to Assist in Communicating with Treatment Providers.  Here is the link but I notice that it does not have an https classification.  You can access it separately (I just did).  

However, to continue this discussion:  There are three sections of the checklist for parents and families and each asks a series of questions and issues a family must address and find the answers for.  My comments are in brackets.

For example, the first section begins with "For all persons with mental health issues, families should request the following (5) questions.  One is "Has the provider reviewed the records of previous mental health providers and communicated with all others who are involved with the persons' treatment and care (e.g. therapist, family physician, case manager.)"?  
[This question is terribly important because at least in our family's experience, records are kept by the previous therapist or doctor or treatment center and are not released unless there is a signed release by the patient.  Often family members automatically assume that records go along with the patient - not so.  Your family member must sign a release.]

The second section begins, "Where an elevated risk of suicide is identified in persons involved in treatment, families have a compelling interest to learn the following" and an example from the list of 6 questions is, "What is the provider's evaluation of suicide risk in this case?  What are the particular warning signs (not the same as risk factors) for suicide in this person's situation?  What steps should the family take if they see these factors occurring (e.g., taking the person to the hospital for reassessment)?  You may wish to ask the provider to help create a plan to monitor and support the family member.  What protective factors exist, and how can these be expanded or enhanced for this person?"
[The family members have an absolute right to be certain that their adult child is receiving the best possible care and is not falling through the cracks.  If the provider does not know the particular warning signs in your loved one, insist that they find out.]

The third section begins, "When the person is at a university or similar setting, the family may wish to ask the education professionals:" and an example from the list of 2 items is, "What systems are in place to support students living with mental illness and to help them avoid self-harm? ...Are the health service and/or counseling services on call 24/7, and if not, what are their hours?  Is there a 24-hour number to call in case of emergency?"
[The same questions might apply to an individual who is living in a therapeutic community or a group home.]

In closing, as the authors state in their article and I have repeated many times in posts on this blog, "Whether the individual agrees or not, nothing [should] prohibit a family member from speaking with the provider to share information, and nothing [should] prevent the provider from listening."  

As was stated by a mother at the F.E.A.S.T. conference in Dallas (2014), our task is to communicate in a way that opens doors and ears for too many providers still do not understand eating disorders.  We can change that, one step at a time

in August 4, 2015: A bipartisan move by Senators Chris Murphy (D-CT) and Bill Cassidy (R-LA) to introduce the Mental Health Reform Act.  Among the important provisions is to "clarify HIPAA to ensure that families of people with severe mental illness have access to critical information concerning their loved ones."

Update November 5, 2015:  I learned in conversation that a facility can reveal whether or not a family member has been admitted to the hospital or to the ER.  There are guidelines provided on the HIPAA website.  Here's one that may be of use to readers:

Update March 29, 2016:  USA Today published an article on this controversy.  You can read it here.

Eating Disorders - Pulling Knowledge Together - Carrie Arnold, Kathryn Hansen and Marya Hornbacher

Several people who’ve been in recovery for quite some time have thought and written about eating disorders (and co-morbidities), including me (here in my blog), from a variety of perspectives and have taken the time to consider and then share what we’ve learned that apparently made a difference.  

For the purposes of this post,  I’m specifically thinking of Carrie Arnold, Kathryn Hansen, and Marya Hornbacher. 

Kathryn Hansen, Carrie Arnold and now Marya Hornbacher with her work in progress have taken/are taking this discussion to the next level.  I know there are many others who have written memoirs on this subject; yet I am focusing on these women because their work is taking our knowledge of eating disorders to the next phase of understanding what's going on in our brains and possibly why; how we think and why.  They are/will be sharing their knowledge in an easy, conversational style to help those of us who are not scientists understand scientific concepts and developments.

Their work is important because until as recently as 2010, prominent people in the field of eating disorders were lamenting that new knowledge about eating disorders could take years and years to reach the eyes and ears of those who can help make a difference, particularly in residential treatment centers, in doctors' and therapists' offices and in homes where parents and other family members are employing the latest thinking and techniques to help their family members get going on recovery.  

The electronic media is serving to speed up this process.

Few are familiar with Kathryn Hansen’s book Brain Over Binge, Camellia Publishing, 2011, possibly because of the concept of the “tipping point" made so popular by Malcolm Gladwell in his book,  The Tipping Point: How Little Things Can Make a Big Difference first published by Little Brown in 2000.   Since she has now developed a workbook to accompany the book, perhaps her ideas are catching on.   Kathryn's work preceded much of the literature about the brain and eating disorders, some of which I learned in a course I took here at the University of Arizona and wrote about here on my blog.  Kathryn published her book in 2011.  Since then information has started to tumble forth and people, who are coming to understand better, are paying attention and advocating for change through legislation.  After I read her book, I wrote something of a review incorporating additional information and examined what she wrote here.   From the book cover, I pull the following:

After six years of chronic binging and purging, Kathryn Hansen stopped her eating disorder independently and abruptly, using one tool and one tool only:  the power of her own brain.  In Brain over Binge, Kathryn traces the course of her condition and describes in detail her unconventional approach to recovery.  In the process, she offers a much-needed alternative perspective to the canvas of eating disorder literature to help others struggling with any form of binge eating.

The mainstream view of bulimia holds that is is a disease that manifests as a means of coping with deep underlying emotional problems.  But the author persuasively argues that in her case, this philosophy actually encouraged more binge eating.  For her, it really was about the food.  Kathryn's candid account cuts through the confusion she experienced in traditional therapy and simplifies both the origins of bulimia and its cure in a fresh, intriguing, and always clear voice.

Brain over Binge is a brave book that will help many by delivering an informed and inspiring message of free will, self-reliance, and self control.

She provides more information about her personal recovery process at her website here.  Note again that her book was published in 2011 and since that time much, much more has been revealed about the brain and genetics.  However, her book offers a powerful perspective on how important and effective a change in behavior can be.

In summary, if you haven't found a way to overcome your bulimia or help your loved one overcome bulimia, take a look at this post here on my blog:  

Many people are hailing Carrie Arnold’s book, Decoding Anorexia: How Breakthroughs in Science Offer Hope for Eating Disorders, Routledge, 2013, as a major contribution to the understanding of eating disorders.

Following are two excerpts from the book's cover.  The first is written by Walter Kaye, MD, Professor of Psychology and Director, University of California, San Diego, Eating Disorder Research and Treatment Program.  To better understand the import of what he has to say about Carrie Arnold's achievement, you can read more about him and his outstanding dedication to his work here.   He writes, 

Carrie Arnold has done an outstanding job of translating complex and difficult research findings into understandable concepts.  This book should be an essential guide for individuals with eating disorders and their families who would like to know more about how brain processes contribute to eating disorder symptoms. 

  

 The second excerpt summarizes what one learns when one reads her book:

Decoding Anorexia is the first and only book to explain anorexia nervosa from a biological point of view.  Its clear, user-friendly descriptions of the genetics and neuroscience behind the disorder are paired with first person descriptions and personal narratives of what biological differences mean to sufferers.  Author Carrie Arnold, a trained scientist, science writer, and past sufferer of anorexia, speaks with clinicians, researchers, parents, other family members, and sufferers about the factors that make one vulnerable to anorexia, the neurochemistry behind the call of starvation, and why it's so hard to leave anorexia behind.  She also addresses how environment is still important and influences behaviors, the characteristics of people at high risk for developing anorexia nervosa, why anorexics find starvation 'rewarding', and why denial is such a salient feature, and how sufferers can overcome it.  

Note for the purposes of what I'm focusing on here: "how sufferers can overcome it."

Jennie Schaefer has written two of the books that are on my shelf:  Life Without Ed: How One Woman Declared Independence from Her Eating Disorder and How You Can Too (2004) and Goodbye Ed, Hello Me: Recover from Your Eating Disorder and Fall in Love with Life (2009).  From the book jacket review, 

Ultimately her two books reveal [again, the changing the behavior theme] that being fully recovered is not just about breaking free from destructive behaviors with food and having a healthy relationship with your body; it also means finding joy and peace in your life."  

I refer to Jennie Schaefer and her groundbreaking books that have helped countless people get on the path to recovery, because Schaefer also maintains a blog and has recently written that she spent quite a bit of time talking with author Marya Hornbacher.  The culmination of that conversation is Schaefer's three fascinating posts detailing what Hornbacher has been thinking since the publication of her first book, Wasted. 

To step back for a moment, Marya Hornbacher first came to everyone’s including my and my family member's attention when she published  Wasted:  A Memoir of Anorexia and Bulimia [1998 by Harper Collins].  The paperback followed shortly after that and arrived in our hands sometime in 2005 when my family member's therapist gave the book to her to read.  It's probably the most candid book I've ever read about eating disorders and yet the book was also hugely educational and helpful to me to try to comprehend the depths of my family member's profound illness that was so much stronger than mine had ever been.    I still highly recommend the book but always provide the caveat that it's not easy reading.

Marya Hornbacher went on to write Madness: A Bipolar Life; another candid memoir that revealed her struggles with the co-moribidity that  interfered with her recovery and her life.  The book includes helpful facts, websites, and contacts regarding the diagnosis of bipolar disorder.

Now, according to the discussion she had with Schaefer, Hornbacher will be considering, among other things, "unsticking" and the importance of changing one’s behavior (one habit) and replacing it with another behavior in order to get into recovery.   Like Arnold, Hornbacher indicates in the interview that she will be spending quite a bit of time researching  material and working with people in order to write this next book.  

I look forward to the publication of her book and in the meantime I refer you to Jennie Schaefer's blog and these three links:
http://www.jennischaefer.com/blog/overcoming-adversity/wasted-full-recovery/
http://www.jennischaefer.com/blog/overcoming-adversity/take-medication-letting-go-mary-hornbacher/
http://www.jennischaefer.com/blog/overcoming-adversity/marya-strategies-unsticking-part-3-3/

Progress re Treatment of Eating Disorders?

[So excited to note here at the top of this post the March Against ED on September 30, 2014 in Washington, DC.  This event has united so many organizations intent on bringing attention to this biologically based illness.  For more information go to this link.   AND, watch the video!! ]

The September 2014 issue of the International Journal of Eating Disorders (Volume 47, Issue 6) arrived in my mailbox yesterday.  As usual, I quickly browsed the contents.  I was so struck by the similarity of themes - meaning much work needs to be done - between the quote I provided in 2010 after attending the NEDA conference, and the Abstract of the first article, "The Therapeutic Process in Psychological Treatments for Eating Disorders: A Systematic Review" by Anne Brauhardt, Martina de Swaan, and Anja Hilbert, especially the Discussion, that I highlighted some of the information in the latter as another lead-in quote to my blog.

Much progress has been made in the understanding of the importance of Family Based Treatment (FBT), of the care and nutrition needs early on in treatment of the person with the eating disorder, of the integral part family dynamics (by family I mean the primary social environment of the person) plays as well as of the role of one's environment and especially of genetics and the understanding of the workings/treatment of the brain.

Yet because eating disorders remain one of the most difficult to treat of all brain based illnesses, so much more work needs to be done and all involved in the field including the organizations supporting the dissemination of information need to work together to help those diagnosed with this range of illnesses.  Currently, I believe there remains too much ignorance as well as an attitude of "this way is better than that way" and the only way the community is going to get around these hurdles is by keeping an open mind as well as staying current with the literature and accepting that perhaps their in many cases limited and self-serving approach is detrimental to helping people get into recovery.

I realize my statements may raise hackles yet I continue to note that the agendas (speakers and their topics) of some sessions still seem to ignore - discount? - what is happening in other areas.  I hope this situation will change.  I have added the blog created by Averil Hart's family to emphasize the importance of knowledge and change in the treatment of eating disorders.

Meanwhile, as I've noted in my header, I will be slowly reorganizing my blog and updating where I can to provide a useful resource for parents, especially parents of adults with eating disorders.  I am encouraged to see lately that more emphasis is being placed on how to treat adults and therefore what might work to help them become motivated to change - a wonderful and important development.

"Their Battle for Their Recovery"

The arrival yesterday in my mailbox of Marjie Ruth's latest post could not have been more timely.  As usual, I remind readers here that my posts are directed towards family members and friends of adults with eating disorders.  As a friend of mine has said many times, we can shine a light on the path and on the opportunities yet ultimately the decision, as Carolyn Costin writes, to get on the path to recovery is up to the person with the eating disorder.  I often say I am an ally but, in fact, I am not the warrior.    Here's Marjie's latest post including their meeting information in case a reader is from the Tampa area and wants to take advantage of the meeting offered:

No one can make you get better.

 The battle for recovery is not between you and me.

 It's not between your eating disorder and anyone else.

 The battle you have to fight to get better is inside of you.

 The battle you have to fight is between your healthy self and your eating disordered self. 

~Carolyn Costin

Dear Family & Friends of the Eating Disordered (ffed)

Summertime is upon us and that means that vacation season is now in full swing. So please let me know if you're planning to attend this week's meeting at 7:00 PM on Tuesday (June 3rd) in Tampa at the Hyde Park Counseling Center on Verne Street in Tampa. Everyone is welcome. The ABA 12-step meeting for those battling a disorder will be meeting at the same time, same place. If you need driving directions, go to www.HydeParkCenter.com. All are welcome. The only cost is the time and energy it takes for you to get there!! Trust me: it's well worth that price. 

This week's quote is by Carolyn Costin rings so true because it is penned by a person who speaks from personal experience as she is recovered from a serious eating disorder. Carolyn not only has fought the tough battle and won, but also she has gone on to become a highly credentialed treating professional and opened her own eating disorder treatment program which has now expanded to 8 locations (MonteNido.com). She has also authored eight very well received books, including Your Dieting Daughter and The Eating Disorder Sourcebook.

And why have I chosen this quote which was obviously directed at someone with an eating disorder, as opposed to a caring family member or other loved one? Because I think what Carolyn has said makes a powerful statement to us about where we stand in the battle our loved one is in with an eating disorder. So, from the start, please note that we aren't in a battle with our loved one's ED. We might be having constant wars with our own emotions as we struggle to handle the upset that comes our way because of the presence of the eating disorder in the life of someone we care about. But we are named "No one" in this quote because:

"No one (that's you & me) can make you (your loved one) get better."

Try as we might, it's beyond our power. And any sustained effort we might exert to try to force the issue, is more than likely to back fire and only make things worse. 

"The battle for recovery is not between you and me."

...it only feels that way. The more involved we are in trying to orchestrate their recovery, the more we become the target for their emotional outbursts. Some of it is because of the struggle for control. ED's are all about your loved one's personal struggle to cope with frightening or unsettling emotions. It's all about control, however false that sense of control might be. When we set up an emotional tug-of-war in which nobody wins.

Because the battle that needs to be fought is within the person and against their disorder, our task is to discern where we may have crossed over a healthy line and to figure out how to extricate ourselves from the melee. That usually means discontinuing any enabling actions on our part and disengaging from any co-dependent behaviors. It may not seem like enough, but steps like these go a very long way in helping to clear the way for a more healthy perceptions for all, which is fertile ground for real healing.

Whether you've only recently discovered that your loved one is dealing with an eating disorder or the war is an old one with significant recovery or perhaps it's a relapse that has your world spinning out of control, figuring our just where your place is in the "conflict" is a vital step. Knowing and accepting that you are not the person in any way in charge of, responsible for, in control of, or able to resolve your loved one's ED is a huge step for both you and your loved one. 

And even if you had learned this lesson previously but needed a refresher, this quote is the admonition for you!!

Marjie Ruth

727-244-9011 (c)

sruth1@tampabay.rr.com

F.E.A.S.T. Conference 2014: Remember to Take Care of Yourself, Too!!

March 28 2019

A few years ago, I flew to Dallas to attend the 2014 F.E.A.S.T. Conference, Connecting the Dots: Expanding the Knowledge Base and Extending the Circle of Care to Fight Eating Disorders.

Three of the speakers - two presented together - focused on a critical aspect of the Circle of Care; namely, the caregiver(s).  This topic is often overlooked because so many of us are focused on the Knowledge Base rather than on the Circle of Care.  However, without a strong Circle of Care -- whether it's composed of mom, dad, partner, aunt, uncle, brother, sister, grandparents or friends to name a few -- the well goes dry.

Those of us who make up that circle must take care of ourselves.  So, how can we do that?

I attended the session titled "From Hopeless and Fearful to Empowered Caregiver!" by Becky Henry, CPCC, who is the Founder of the Hope Network, LLC and a member of the F.E.A.S.T. Board of Directors.  The second session, presented by  Karl and Ellen Kregor,  the grandparents of a young woman who attended the conference, was titled "Extending the Circle of Care: how can extended family support a loved-one with an eating disorder".  [I wish I could have attended both and I look forward to watching the video of the Kregor's session.]

I've written previously about the enormous responsibility taken on by parents and other family members and friends who step up in one way or another to ally with a person who is fighting an eating disorder.  I've written about my own recovery, both in terms of learning how to advocate for my loved one in a healthy way - i.e. taking care of myself; as well as my own recovery from bulimia more than 35 years ago.  If you've been reading my and others' blogs, you probably have seen terms and phrases like in the trenches; post-traumatic stress disorder;  it's a marathon, not a sprint; help! 

Emily Long, LPC, developed a list, a link to which is no longer available, about Extreme Self Care (which is also the title of a useful book of the same title by Cheryl Richardson - The Art of Extreme Self Care).   I've reprinted Emily Long's list of 100 items below.  Many of these suggestions are on my own list and I've added a couple more.  One of the first things Becky Howard asked us to do at the start of her presentation was to make a list of what we do for self-care.  Did you know that smiling releases endorphins?  that laughter does the same thing?  Even if you don't feel like smiling, smile.  I always feel a shift; I'm pretty sure you will, too.

As family members, our goal is to identify things we can do -- if only for a moment or a few minutes, or an hour, or an afternoon -- to take a break.  To re-nourish our spirits and our bodies.  To reconnect with our own support system.  Frankly, I truly believe it's impossible to carry on without these kinds of activities.  Some of the suggestions are beyond the means of some readers; others just aren't possible given time contraints.  But, all offer a way to disconnect, recharge and take a long drink from that Well, the gathering place for women over the ages.

Post the list where you can see it!   On the refrigerator, on your mirror, by the front door.

Thanks to a meeting I attend just about every Saturday, I've learned the acronym H.A.L.T.  It's a reminder that if I am hungry, angry, lonely or tired, I need to halt what I'm doing and take a break.  Here are some ideas:

1. Naps
2. Massage
3. Have an Adventure Day
4. Read (easy, fun reads though, not self-help or professional books!)
5. Snuggle with the cat (or dog or baby or kids)
6. Hugs
7. Long walks and/or hikes
8. Bubble baths
9. Movies (again, easy watches – not horrific documentaries or violent battles or super sad ones that remind you of your own losses)
10. Order dinner in (or have someone else make it)
11. Say no
12. Buy yourself flowers
13. Sip a mug of hot, soothing tea
14. Play in the snow
15. Dig your toes into the sand (dig your toes in the grass.  Remember the movie Pretty Woman?)
16. Feel the sun (or rain) on your face
17. Hold hands
18. Meditate
19. Get a facial
20. Listen to your favorite music
21. Make a delights list
22. Do something on your delights list
23. Repeat above (over and over)
24. Acupuncture
25. Snuggle with your partner
26. Have sex
27. Journal
28. Turn off the computer, cell phone and TV for 24 hours
29. Go on a retreat
30. Sit and people watch
31. Garden or even weed!
32. Do something creative (draw, knit, crossstitch, paint, cook, write, color, make a collage, etc.)
33. Daydream
34. Dance with a child
35. Have a Harry Potter movie marathon (it’s a personal favorite!)
36. Take a mental health day from work
37. Keep your daily to-do list to 3 items or less
38. Swing on the swings
39. Have energy work done
40. Have a laugh fest with your best friend
41. Eat simply
42. Break up with your TV
43. Allow yourself to cry and experience your emotions
44. Join a support group
45. Get a pedicure (or manicure)
46. Tell yourself “I love you”
47. Browse your favorite bookstore (or music store)
48. Have a game night with friends
49. Write thank you notes to those who have touched your life and inspired you
50. Spend the day exploring your town – go places you don’t normally go
51. Practice random acts of kindness & senseless acts of beauty
52. Write a love letter to someone you love ( doesn’t have to be a partner)
53. Write a love letter to yourself
54. Have a “Freedom from Self-Improvement Day”
55. Listen to Holosync
56. Color (try going outside the lines – its fun!)
57. Keep a gratitude journal
58. Talk a walk with your camera – take pictures of all you see that delights you
59. Find and notice something beautiful every day
60. Do something badly.  Keep doing it.
61. Admire beautiful artwork
62. Do absolutely nothing
63. Do one brave thing everyday
64. Play
65. Treat yourself to something
66. Wear something that makes you feel beautiful or handsome and confident
67. Have an “All Day PJs Day”
68. Say I love you everyday
69. Jump in piles of leaves
70. Quit the job you hate that drains you
71. Say YES to what you truly love
72. Give yourself permission
73. Let go of belongings you no longer love or use (even family heirlooms)  Also applies to relationships
74. Hire someone to clean your house
75. Hire someone to mow your lawn
76. Let go of your story - aren't you tired of it?
77. Laugh
78. Be generous
79. Lay in the grass and watch the clouds
80. Take a long walk with your dog
81. Ride horse
82. Give up New Year’s Resolutions.  Pick a word instead
83. Stop drinking caffeine
84. Dance around your house
85. Forgive others
86. Forgive yourself
87. Make a list of the things you want to do in your lifetime
88. Do one of those things
89. And then do another
90. Eat healthy, whole foods
91. Eat something unhealthy AND enjoy it without self-criticism or guilt
92. Watch cartoons
93. Read the comics
94. Smile for no reason
95. Call the friends you’ve been meaning to call
96. Go complaint free
97. Schedule a day of no schedule
98. Go boat riding
99. Buy yourself a cheery balloon
100. What do you do for extreme self-care?
101. Seek therapy/psychiatric care
102. go outside in a rainstorm and splash through puddles
103. Walk through your local nursery.  I did and took a photo of the petunias at the top of this page (and then bought the basket and brought it home).
104. Eat a piece of dark chocolate
105. Give Up [this is not what you think so read my definition just below]

#105 - Give Up - is an important one for me.  Somewhere along the line through these many years I realized that to Give Up does not mean to quit; rather, it means to give it up to God so that S/He can relieve me of my worries and cares for awhile.  Another similar expression is "Turn it Over."  In the middle of the night when I wake up, I now envision God wrapping my loved one in a white soft blanket and holding her so I can get some sleep.  This image has helped me countless times to get the necessary sleep to carry on.

#101 - my own experience re seeking therapy/psychiatric help

To close, my mother who was part of my family member's (and my) Circle of Care loved to needlepoint.  She created this for me so I would remember that I do not have to "do it" alone:

The Wellness Recovery Action Plan - W.R.A.P.

Almost two weeks ago, as I was sitting in a Crisis Center Emergency Room, a peer counselor started a conversation with me and introduced me to a program I'd not heard about before called the Wellness Recovery Action Plan.  I have since learned that this program is being used in other countries and is gaining traction in the United States as well as in my own community's mental health teams.

Here is the link:  http://www.mentalhealthrecovery.com/wrap/

The peer counselor handed me his copy of the manual (can be ordered on line) so I could browse through it while I was waiting.  My brief cursory review told me three things:

first, that the program actually is quite simple, straight-forward,and relevant;
second, that I might even be able to use it for myself, as a parent; and
third, that the forms included in the manual can be copied and used.


I ordered the manual and will write further, have adopted some of the practices, and wanted to provide another avenue to get this information "out there."  The acronym KISS comes to mind in a good way.

Generics sometimes don't do the job

As I have shared previously here, I have struggled with maintaining my mental health equilibrium for many years while my family member has been battling an ED.  I've heard the description "situational depression."  I've also heard PTSD.

Three years ago or so, I finally picked up the phone (for me, difficult to do because I am not a pill person) and called the number of a psychiatrist given to me by my excellent therapist.  What finally got me to the phone was a combination of feeling utter despair because my family member was unable to move forward, in fact had returned to self-destructive behaviors following the latest treatment, and I was reading a book to write a review for NEDA.  The book, by the way, was Crave by Cynthia M. Bulik, Ph.D.

I had come across a passage that described dysthymia and suddenly realized that the description of the disorder was how I felt.

If you're curious, you can read about my early steps in the anti-depressant world here.

Anyway, I migrated off the celexa which left me not caring about anything having to do with anything (talk about reducing anxiety!!) and started taking Buproprion, the generic version of Wellbutrin.

All went along fine mostly because, as it turns out, the manufacturer chosen by the dispensary used by my health insurance used a formula that worked for me.  As I've also mentioned earlier, my psychiatrist explained to me that any product by law can range from 85% to 125% efficacy of the non-generic.  And, I'll bet there's a genetics piece to this, too.

Then our medical insurance provider suddenly switched to a new dispensary.  The first go-around with yet a different manufacturer of Buproprion went just fine.  However, in the middle of the summer I received a refill from yet another manufacturer.

I didn't think anything of it until about two weeks later when I began to feel overwhelmed with my old feelings.  After one particularly difficult day (the best description I can come up with is not feeling right in my own skin), I reflected that night on my life and what might be different and the only thing that popped to the surface was the fact that the Buproprion I was taking was different.

So, I called the dispensary and reported this the next morning.  I did get an apology but no help so I called my psychiatrist's office.  He immediately understood the situation having been my doctor now for quite awhile and ordered the non-generic from my local pharmacy which filled it the same day - 30 days worth.  I was scheduled to see him in two weeks and that would give me a chance to see if the change made a difference (given how this med works) or not.

Taking the non-generic sure did make a difference.  I felt so much better!  The shocking thing, of course, is that the non-generic isn't covered by my insurance in spite of the fact that their dispensary sent me a worthless (for my genetic make up) version.  So I went from paying a bit under $50 to a bit less than three times as much for thirty days of my med.

I have also learned that many people have struggled with this same problem with the generic of this medication and have had advocates who've managed to over-ride the system so that they can receive the "real thing."  I am hoping to do this next.  [This failed.  My appeal was denied.]

Meanwhile, I had to spend quite a bit of time on the phone this morning getting the dispensary available to me to over-ride the old calendar renewal date for Buproprion and replace the rx with the new one for Wellbutrin sent in at the end of August by my psychiatrist.

It shouldn't be this difficult!!!!