After writing the previous post, I decided to illustrate what resources can be made available when an organization -- in this case NEDA, the National Eating Disorders Association -- makes publications free and available to the public through a website.
There are three publications currently available and up-to-date (as of summer 2010) for family members and loved ones, for coaches/athletic trainers, and for educators.
If you'll scroll through, for example, the Parent's Toolkit, you will find references to many resources. The same goes for educators and for coaches/trainers. For first time visitors, just click on the highlighted words to go directly to the publication(s).
Imagine if these publications could be made available to all the elementary, junior, senior high, and college/universities here in Tucson. To counseling offices, to athletic departments, to hospitals.
It's not that difficult. I did it by downloading copies for the earlier mentioned terrific mental health provider team and for the hospitals involved. I know these were used. Others can do this, too!
Similar manuals could be constructed for those who encounter people with mental illness/brain disorders. Making them free and available to the public via websites (therefore in the library, too), would help a lot. The Family to Family course I attended through NAMI provided us with an enormous notebook of resources and educational materials. Perhaps this could be synthesized in some areas and expanded in others, similar to the NEDA parent publication.
The Academy for Eating Disorders has created a flyer to be provided to doctors. NEDA has found that the first source of information for parents of those with eating disorders is the family physician. Dental offices can use this brochure, too, since dentists often can be the first to notice the ravages of eating disorders. Currently the information can be found in the AED Report 2012, 2nd Edition, Eating Disorders - Critical Points for Early Recognition and Medical Risk Management in the Care of Individuals with Eating Disorders.
The same could be done for those who encounter people with signs of brain disorders/mental illness. I have not researched this thoroughly and I do know that the local chapter of NAMI has brochures that walk people through a variety of mental illness as well as what to do.
When first confronted with illness, as mentioned above, most people turn to their family doctor. I believe medical training must include a strong component on mental illness/brain disorders and on eating disorders. I know this is beyond the scope of the forum, but it must be done.
In closing, one of the best resources in Tucson in my experience, other than NAMI, is SAMHC - the Southern Arizona Mental Health Corporation. I think it might be useful to include someone from SAMHC on the panel.
Information is provided about eating disorders, particularly of adults, to parents and other loved ones written by a parent who is in recovery from an eating disorder.
Welcome
When I created this blog, I was "getting on" in my early sixties, hence the blog name. However, my adult daughter's eating disorder and co-occurring emotional dysregulation disorder and other co-morbidities - ongoing for about 33 years - became and was our focus as we attempted to help her get into recovery. By learning about, reflecting on, reading about, attending conferences and writing about eating and brain disorders, I created a place to blog what I've learned. I hope this blog will be of use to others, especially families of and adult sufferers themselves to help them get into recovery. I update posts from time and the update date will be present at the top of the post.
Sadly, my daughter passed away in early October 2021 mainly because her body became so malnourished that she was immunocompromised, contracted a severe infection that was not properly addressed during an earlier hospital stay the month before, and developed an overwhelming non-covid pneumonia following surgery to save her life. I believe she should have been able to receive palliative care but Arizona, our country, and even the professionals trained in the treatment of eating disorders, particularly anorexia, are not "there" yet. I address the issue of palliative care in a recent post below, initially written in November 2021. I am not a certified eating disorder specialist. I am an Expert by Experience and college-educated with a BA in Community Work with an additional certificate in a one-year program in Business Administration from the same institution.
I am passionate about all of this because, as Shakespeare wrote in The Taming of the Shrew, Act 4, Scene 3: "My tongue will tell the anger [and sadness] of my heart or else my heart, concealing it, will break. And, rather than it shall, I will be free even to the uttermost, as I please in words."[2016]
Travel Guide
If you're new to my blog, I recommend you begin on the right side and take a look at the "Of Note" offerings. Read Dr. Cynthia Bulik's recent published interview (5/4/22) "Rethinking Eating Disorders" if you want to print an easy-to-understand professional's expert opinion about anorexia for your family doctor or the therapist. [Early intervention is absolutely critical. For those whose eating disorder is categorized as entrenched or severe and enduring, read the editorial comment by Stephen Touyz and Philipa Hay for a new approach about treatment. It is possible for your loved one to recover! I have also attached a link here for additional papers on the subject of severe and entrenched eating disorders. If you are a family member or friend of an adult with an eating disorder and have been at this for awhile, I refer you to the posts within the title "Adult Eating Disorders and Recovery Tools" found in the Index on the right hand side of this site. As well, in the "Of Note" section take a look at those posts with an asterisk. If you're a parent and need support, look for posts in the Index about parent support or parent toolbox.
In my opinion, the best book to buy, to refer to constantly and to share with members of the medical/psychiatric profession is "Sick Enough: A Guide to the Medical Complications of Eating Disorders" by Jennifer L. Gaudiani MD, CEDS, FAED. "Dr. Gaudiani aims to improve medical diagnosis and treatment, motivate recovery, and validate the lived experiences of individuals of all body shapes and sizes, while firmly rejecting dieting culture."
I recommend two groups who will support you on your journey - F.E.A.S.T and the National Alliance for Eating Disorders. Both maintain websites and Facebook private groups.
Sunday, February 27, 2011
Addressing Mental Illness (including Eating Disorders which are brain disorders) in Tucson - what needs to change
I was published today. Not a momentous occasion justifying champagne or anything like that since the item was a Letter to the Editor of the local paper. But exciting just the same because I felt strongly about an item and was moved (literally) to go to my computer immediately and write a response to an editorial that announced an exciting event titled, Time Has Come for Complete Talk on Mental Illness.
The event is a forum to specifically discuss "A Delicate Balance: Creating a better, post-January 8 system to protect the public and help the mentally ill" and is scheduled to be held on the afternoon of April 27 and sponsored by the Arizona Daily Star (our newspaper) with the Schorr Family. The keynote speaker will be Dr. Thomas Insel who is the director of the National Institute of Mental Health. The goal is to talk about serious crime and mental illness but beyond that, and an issue near and dear to my heart, is a discussion of "...whether or not Tucson has the tools, resources and system to help the seriously mentall ill and are they adequate. If not, what changes are needed?"
Okay, let's go back a bit. The forum is going to be held on the afternoon of a weekday.
The more of the editorial I read, the more excited and at the same time dismayed I became because an hour will be spent following the panel discussion for Q&A by the public. And that seemed untenable to me given the time of day this will be held. So I wrote a letter. (Scroll down until you see a letter about a forum.)
My concern is that few people who are truly affected by the tools, resources and system (or actually the paucity of the same) would be able to attend since they'll undoubtedly be working to try to make ends meet.
And, their voices need to be heard.
Why do I know this? Because I attended a wonderful NAMI Family to Family educational series four years ago and learned so much not only about mental illness/brain disorders but also what to do and how to access the tools, resources and system here. The knowledge I gained was amazing and the frustration I heard from other parents who attended was amazing, too. And, I know not too much has changed. If anything, because of the State of Arizona cutbacks, the situation is even worse because many people are now taking generics of medications that are critical for their state of mental health. Often, these generics aren't the same. I learned this, too, because my doctor explained that the drug companies that make the generics have the leeway of being anywhere between 85 percent and 125 percent of accuracy in the amount of the drug needed per pill. Funding has been cut to the agencies that provide services, as well.
The above was one reason. Reason two occurred later that year when of necessity I began to live in my car (so it seemed) for hours each day taking a person to therapy sessions, to meetings with a psychiatrist, to group sessions, to medical doctor appointment, to labs .... etc. A chunk of many days was also spent in the waiting room of one of the mental health providers here learning, while I waited, about others' experiences. There were times when I could have cried. So many times, people would come to the facility having had to take at least two buses to get there, only to arrive later than their appointment was scheduled and told to reschedule. Family members and/or friends would take precious time off to get their family member to the facility to avoid missing an appointment. Others, because of their mental illness, would become confused and lacking an advocate would forget what it was they were to do next or forgot to have their prescription renewed and had to wait for an appointment to get more. Sometimes they need to wait until the medication is approved by the carrier. What then? What about withdrawal symptoms from missed doses? Some people who came in were belligerent and upset others who were waiting their turn. I witnessed so much.
I also lived the frustration and sadness of trying to help navigate the system only to see someone I love fall through the cracks and almost die -- at least four times -- because no one was keeping tabs or because eating disorders are still totally misunderstood by many or because I did not have the right to learn of missed appointments (HIPAA) and no one from the agency followed up.
Thanks to my NAMI class I learned who to call and where to go. I was present at meetings whenever I could be and was allowed to be and took voluminous notes. I still am and still do. I worry about those who do not have advocates. I wonder about those who show up at emergency rooms and are thrown out because they are disruptive when in fact they desperately need help (I know this happens; I saw it happen). I know there are hospitals here that simply do not understand eating disorders -- for you parents, can you imagine sitting in a locked down area in the ER and having a doctor ask a person with an ED about their "regularity", hearing them say they are constipated, and then hearing the doctor offer a laxative!!!?? or watching as nurses administer a large dose of a medication that was contraindicated only to send a person into an extreme panic attack that culminated in an escape from the ER with an IV still in the arm? Can you imagine sleeping on the floor overnight of a section of the ER in order to ensure that your loved one will be seen by a doctor and will remain there long enough to be evaluated? Without resorting to Title 36 procedures, I did that several times until I realized I'd run out of options and the doctors on staff just didn't "get it".
Can you imagine finally resorting to Title 36 only to be told the person, whose weight was incredibly in the danger zone, was not a danger to themselves so the case was dismissed? and then to come upon the results of a desperate act that you knew was coming?
Imagine needing to call a lead person of the oversight organization personally to intervene and then finally obtain hospitalization only to experience the horror of learning they were treated incorrectly to the possible point of compete disability? I could go on and on. So much needs to change.
So, going back to why I wrote the letter, again a discussion about change MUST include the voices of the families who have experienced situations like this countless times for serious mental illnesses ranging from OCD to schizophrenia to depression to borderline personality disorder (a misnomer) to eating disorders.
I know other families have similar stories and they need to be heard so those who are leading the forum discussion can get a better idea of what is lacking here. Transportation needs to be part of the discussion, too, for I wonder just how many people can get to the forum anyway either because they cannot afford the fare or they cannot get home because of bus service cutbacks to their area or not even having bus service and they live withing the city limits! [and one of the candidates for Mayor wants to cut back city subsidization]
I'm not sorry about this rant. It's been a long time coming. What I am sorry about is that Tucson does not have enough tools, resources and services.
I know we can do better.
I know we can do better because there is one hospital here that stepped up to the situation and worked to understand what was needed. The staff was wonderful. There is a mental health provider team in action here that has gone to extraordinary lengths to understand eating disorders and to provide the best possible opportunities for recovery although residential treatment is unavailable through the system. To be fair, I should note that residential treatment for adults and even minors is not covered by many, many insurance companies and states nationwide. This needs to change, too. There is an Eating Disorder Coalition working in Washington, DC, to effect that change. NAMI is very active, as well, to obtain parity with coverage of other illnesses.
I know people care. I know they are stretched. I know they need help and ideas and solutions. We all do.
If this hospital and this team can learn and change, so can others. But, it takes resources. It takes a forum during which a conversation can occur and other conversations follow to address what needs to be done. These discussions need people who understand, who are in the trenches both in services or in experience.
We as a community could start by advocating for the publication of PSA's in the paper similar to the quarter-page advertisement I accidentally came upon in the Orem, Utah Daily Herald (in the lifestyle section -- a suggestion coming in a moment) earlier this year placed by the Utah County chapter of the National Alliance on Mental Illness.
The item first described what NAMI is and then listed the "FREE programs that NAMI, UTAH COUNTY runs. I'll list their offerings in a moment. I know that NAMI offers several things here, too, but not all free. I believe a similar advertisement needs to appear monthly in all the sections of whatever publications we have here in Tucson, including for example the Arizona Daily Star, the Tucson Weekly, and Inside Tucson Business. Mental illness is far more common than many realize and eating disorders which are brain disorders kill more people than any other mental illness.
Here's what's offered by NAMI and advertised in Utah County, Utah:
Family-to-Family: This is a 12-week class for family members who have a loved one with a mental illness. All of these classes are taught by family members who have a loved one with mental illness. For information on this class and to sign up, please call [name and number].
Bridges: This is a 10-weeek class for individuals with mental illness. All of these classes are taught by individuals who have mental illness and are in recovery. For information on this class and to sign up please call [name and number].
Basics: This is a 6-week class for parents of children ages 0-18 years who have mental illness. All of these classses are taught by parents with children with mental illness. For more information call....
IOOV: In our own voice is a presentation where 2 guest speakers share their stories on living with a mental illness. To find out more about thi sprogram or to schedule a presentation, call......
Support Group and Guest Speakers: We have support group meetings on the 2nd and 4th Tuesdays of every month from 7-9 pm The guest speakers fall on the 2nd Tuesday of each month and speak from 7-8 p.m. All support group meetings are for both the individual with mental illness and their loved ones or anyone who is interested in learning more about NAMI. If you have any questions, please call....
Family Connections is a 12-week research-based family program. It was specifically designed to meet the needs of family members who have a relative with borderline personality disorder (BPD), or symptoms of the disorder. For more information contact bpdutahcount@gmail.com
The local NAMI chapter here in Tucson provides similar offerings. I think it would be great if the local newspapers would advertise NAMI's offerings frequently!
As an important postscript and indicative of the urgency of discussions and education, specifically regarding eating disorders, The International Association of Eating Disorder Professionals has started a chapter here in Tucson. This is an important first step towards more awareness and education about eating disorders. The IAEDP will be offering an open meeting featuring author Harriet Brown on Friday, March 11. Harriet Brown will also be participating in the Tucson Festival of Books. Her book, Brave Girl Eating, is a valuable addition to the field and provides a family's experience.
The event is a forum to specifically discuss "A Delicate Balance: Creating a better, post-January 8 system to protect the public and help the mentally ill" and is scheduled to be held on the afternoon of April 27 and sponsored by the Arizona Daily Star (our newspaper) with the Schorr Family. The keynote speaker will be Dr. Thomas Insel who is the director of the National Institute of Mental Health. The goal is to talk about serious crime and mental illness but beyond that, and an issue near and dear to my heart, is a discussion of "...whether or not Tucson has the tools, resources and system to help the seriously mentall ill and are they adequate. If not, what changes are needed?"
Okay, let's go back a bit. The forum is going to be held on the afternoon of a weekday.
The more of the editorial I read, the more excited and at the same time dismayed I became because an hour will be spent following the panel discussion for Q&A by the public. And that seemed untenable to me given the time of day this will be held. So I wrote a letter. (Scroll down until you see a letter about a forum.)
My concern is that few people who are truly affected by the tools, resources and system (or actually the paucity of the same) would be able to attend since they'll undoubtedly be working to try to make ends meet.
And, their voices need to be heard.
Why do I know this? Because I attended a wonderful NAMI Family to Family educational series four years ago and learned so much not only about mental illness/brain disorders but also what to do and how to access the tools, resources and system here. The knowledge I gained was amazing and the frustration I heard from other parents who attended was amazing, too. And, I know not too much has changed. If anything, because of the State of Arizona cutbacks, the situation is even worse because many people are now taking generics of medications that are critical for their state of mental health. Often, these generics aren't the same. I learned this, too, because my doctor explained that the drug companies that make the generics have the leeway of being anywhere between 85 percent and 125 percent of accuracy in the amount of the drug needed per pill. Funding has been cut to the agencies that provide services, as well.
The above was one reason. Reason two occurred later that year when of necessity I began to live in my car (so it seemed) for hours each day taking a person to therapy sessions, to meetings with a psychiatrist, to group sessions, to medical doctor appointment, to labs .... etc. A chunk of many days was also spent in the waiting room of one of the mental health providers here learning, while I waited, about others' experiences. There were times when I could have cried. So many times, people would come to the facility having had to take at least two buses to get there, only to arrive later than their appointment was scheduled and told to reschedule. Family members and/or friends would take precious time off to get their family member to the facility to avoid missing an appointment. Others, because of their mental illness, would become confused and lacking an advocate would forget what it was they were to do next or forgot to have their prescription renewed and had to wait for an appointment to get more. Sometimes they need to wait until the medication is approved by the carrier. What then? What about withdrawal symptoms from missed doses? Some people who came in were belligerent and upset others who were waiting their turn. I witnessed so much.
I also lived the frustration and sadness of trying to help navigate the system only to see someone I love fall through the cracks and almost die -- at least four times -- because no one was keeping tabs or because eating disorders are still totally misunderstood by many or because I did not have the right to learn of missed appointments (HIPAA) and no one from the agency followed up.
Thanks to my NAMI class I learned who to call and where to go. I was present at meetings whenever I could be and was allowed to be and took voluminous notes. I still am and still do. I worry about those who do not have advocates. I wonder about those who show up at emergency rooms and are thrown out because they are disruptive when in fact they desperately need help (I know this happens; I saw it happen). I know there are hospitals here that simply do not understand eating disorders -- for you parents, can you imagine sitting in a locked down area in the ER and having a doctor ask a person with an ED about their "regularity", hearing them say they are constipated, and then hearing the doctor offer a laxative!!!?? or watching as nurses administer a large dose of a medication that was contraindicated only to send a person into an extreme panic attack that culminated in an escape from the ER with an IV still in the arm? Can you imagine sleeping on the floor overnight of a section of the ER in order to ensure that your loved one will be seen by a doctor and will remain there long enough to be evaluated? Without resorting to Title 36 procedures, I did that several times until I realized I'd run out of options and the doctors on staff just didn't "get it".
Can you imagine finally resorting to Title 36 only to be told the person, whose weight was incredibly in the danger zone, was not a danger to themselves so the case was dismissed? and then to come upon the results of a desperate act that you knew was coming?
Imagine needing to call a lead person of the oversight organization personally to intervene and then finally obtain hospitalization only to experience the horror of learning they were treated incorrectly to the possible point of compete disability? I could go on and on. So much needs to change.
So, going back to why I wrote the letter, again a discussion about change MUST include the voices of the families who have experienced situations like this countless times for serious mental illnesses ranging from OCD to schizophrenia to depression to borderline personality disorder (a misnomer) to eating disorders.
I know other families have similar stories and they need to be heard so those who are leading the forum discussion can get a better idea of what is lacking here. Transportation needs to be part of the discussion, too, for I wonder just how many people can get to the forum anyway either because they cannot afford the fare or they cannot get home because of bus service cutbacks to their area or not even having bus service and they live withing the city limits! [and one of the candidates for Mayor wants to cut back city subsidization]
I'm not sorry about this rant. It's been a long time coming. What I am sorry about is that Tucson does not have enough tools, resources and services.
I know we can do better.
I know we can do better because there is one hospital here that stepped up to the situation and worked to understand what was needed. The staff was wonderful. There is a mental health provider team in action here that has gone to extraordinary lengths to understand eating disorders and to provide the best possible opportunities for recovery although residential treatment is unavailable through the system. To be fair, I should note that residential treatment for adults and even minors is not covered by many, many insurance companies and states nationwide. This needs to change, too. There is an Eating Disorder Coalition working in Washington, DC, to effect that change. NAMI is very active, as well, to obtain parity with coverage of other illnesses.
I know people care. I know they are stretched. I know they need help and ideas and solutions. We all do.
If this hospital and this team can learn and change, so can others. But, it takes resources. It takes a forum during which a conversation can occur and other conversations follow to address what needs to be done. These discussions need people who understand, who are in the trenches both in services or in experience.
We as a community could start by advocating for the publication of PSA's in the paper similar to the quarter-page advertisement I accidentally came upon in the Orem, Utah Daily Herald (in the lifestyle section -- a suggestion coming in a moment) earlier this year placed by the Utah County chapter of the National Alliance on Mental Illness.
The item first described what NAMI is and then listed the "FREE programs that NAMI, UTAH COUNTY runs. I'll list their offerings in a moment. I know that NAMI offers several things here, too, but not all free. I believe a similar advertisement needs to appear monthly in all the sections of whatever publications we have here in Tucson, including for example the Arizona Daily Star, the Tucson Weekly, and Inside Tucson Business. Mental illness is far more common than many realize and eating disorders which are brain disorders kill more people than any other mental illness.
Here's what's offered by NAMI and advertised in Utah County, Utah:
Family-to-Family: This is a 12-week class for family members who have a loved one with a mental illness. All of these classes are taught by family members who have a loved one with mental illness. For information on this class and to sign up, please call [name and number].
Bridges: This is a 10-weeek class for individuals with mental illness. All of these classes are taught by individuals who have mental illness and are in recovery. For information on this class and to sign up please call [name and number].
Basics: This is a 6-week class for parents of children ages 0-18 years who have mental illness. All of these classses are taught by parents with children with mental illness. For more information call....
IOOV: In our own voice is a presentation where 2 guest speakers share their stories on living with a mental illness. To find out more about thi sprogram or to schedule a presentation, call......
Support Group and Guest Speakers: We have support group meetings on the 2nd and 4th Tuesdays of every month from 7-9 pm The guest speakers fall on the 2nd Tuesday of each month and speak from 7-8 p.m. All support group meetings are for both the individual with mental illness and their loved ones or anyone who is interested in learning more about NAMI. If you have any questions, please call....
Family Connections is a 12-week research-based family program. It was specifically designed to meet the needs of family members who have a relative with borderline personality disorder (BPD), or symptoms of the disorder. For more information contact bpdutahcount@gmail.com
The local NAMI chapter here in Tucson provides similar offerings. I think it would be great if the local newspapers would advertise NAMI's offerings frequently!
As an important postscript and indicative of the urgency of discussions and education, specifically regarding eating disorders, The International Association of Eating Disorder Professionals has started a chapter here in Tucson. This is an important first step towards more awareness and education about eating disorders. The IAEDP will be offering an open meeting featuring author Harriet Brown on Friday, March 11. Harriet Brown will also be participating in the Tucson Festival of Books. Her book, Brave Girl Eating, is a valuable addition to the field and provides a family's experience.
Thursday, February 24, 2011
Using Animation to Talk about Eating Disorders
Sometimes books and dry lectures aren't enough to capture the imagination and attention of people who sincerely want to learn more about eating disorders.
This link takes one to further information about eating disorders using animation. They are quite clever!!
I'm going to ask around to see if I can link one direction up here for viewing, too, as I'm still a neophyte about things like this.
This link takes one to further information about eating disorders using animation. They are quite clever!!
I'm going to ask around to see if I can link one direction up here for viewing, too, as I'm still a neophyte about things like this.
Saturday, February 19, 2011
Letting Go/Detaching With Love
Each time the subject of Letting Go/Detaching with Love comes up in discussion, I benefit from a different perspective thanks to the sharing of many folks. I have learned over the past six or so years that detaching with love or letting go is a process. Sometimes I need to detach again and again and again. I cannot imagine being able to accomplish this completely although I work at it -- I wish it were possible, but I know it isn't, especially when it comes to someone I deeply love, especially one of my children.
Today, in discussion, I realized (again) that this journey to recovery isn't mine; it doesn't belong to me. It's one of those peeling the onion realizations. Step by step. I cannot control the outcome.
I think knowing that this isn't my journey is the hardest part to accept. Part of my perspective -- my expectations, actually, color my perspective -- is my intense desire to be able to control the outcome of treatment. I cannot control the outcome. I know that I cannot control the outcome. I must keep gently telling myself that, over and over. In the meantime, as an advocate, I'll do everything I can to provide the opportunities for recovery but in the end, the decision to get on that path doesn't belong to me.
Argh! That's so difficult to accept. I want to be Samantha and wiggle my nose or Glinda of Oz and wave my wand. Magical Thinking. Doesn't work. I must remember to turn this over to my Higher Power and trust, whatever the outcome.
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