Juggling Life

Fake: A Guest Poet Post

The profile of someone who will develop anorexia includes being a high achiever--I've actually never met cooler kids than in an eating disorder group. This wonderful young woman is in her fight right now. She was also in Washington D.C. lobbying with her mom (from Hawaii!). She recently did a beauty pageant to motivate herself to gain weight and spread eating disorder awareness.

I do not think the consumer, thin-focus culture causes eating disorders, but I do believe that every single one of us needs to learn to think critically about the influences in our world--and how they can brainwash us. I am impressed with this insight from 14-yr old Aislinn Carroll. 

 

I can hear the banter of the emcees.
Girls are bustling around with their makeup teams
Practicing fake smiles
Fake tans
Butt glue
White teeth
Plastic boobs.

Identical 5-inch heels piled in a corner
We treat this like its normal?
Lined up like stock for slaughter
A number pinned to my hip.
My identity: a number.
Objectified?
Check.

A cheery song plays as we walk into the hot lights
Trying to get our eyes wide even though
Our retinas are being burned.
Beauty Hurts.

The judges are looking me up and down
Picking out every flaw.
Did I miss a spot when I shaved?
Did I not tone enough?
Did I eat too much?

Her skin is clearer.
Her hair is longer.
Her waist is smaller.
Her thighs are slimmer.
Her smile is brighter.
She is the winner.

I hold my face still as a pool of tears
Formulates in my eyes.
I pretend to be happy.
To love this girl who never acknowledged me.
She is complimented on her congeniality.
Even though she told me to hold off
On the cookies.

I realized what this all is.

Fake.

 

 

When Should Advice Columnists Just Shut Up?

Brian Cuban and I co-wrote this piece; his is a strong voice for speaking out about eating disorders affecting not just men, but women. I very much appreciate his willingness to engage in dialogue about causation of eating disorders and am pleased to do advocacy work with him. 

In her July 12, 2014 column, syndicated advice columnist “Ask Amy”, Amy gave advice to a teen who was worried both about her father having anorexia and her own increasing unhealthy thoughts about her weight. (Ask Amy: Daughter worries about dad’s unhealthy eating), Frequently, when a young person “Asks Amy”, or another columnist, for advice on a complicated medical topic, he/she is encouraged to seek further counsel and disclose the concern to a trusted adult. Instead, the response to this letter left the teen with no more information than when she wrote in (other than advice to protect the family’s pets from the food restriction which is a symptom of the father’s illness) and a directive to share her concerns with her parents then move on.

It is appropriate for any advice columnist to consult an expert when faced with a question that is outside his/her scope of knowledge, as this question seems to have been for Amy. Most people, not just advice columnists, assume they know what causes eating disorders. The research in the field of eating disorders is ever changing and has exploded in the past decade with the advent of new technologies such as functional MRIs and conventional wisdom has been turned on its head. It is unlikely that any layperson would be able to offer solid advice in this situation.  This is not the first time an eating disorder related question has been posed to Amy.  In a June 18th column, “Parents Undermine Eating Disorder Recovery” Amy did in fact reach out to someone with specialized knowledge in in the Eating Disorder field as part of her answer.  Why not this time before giving dismissive, and frankly ridiculous input about the effect on the pets.

If this daughter is correct, her father has anorexia, a biological, brain-based mental illness with a mortality rate in the neighborhood of 20%.  Eating disorders in themselves, have the highest mortality rate of any psychological illness. Not something in which advice should be given dismissively or without a specialized background. Sadly, eating disorders are often accompanied by anosonogsia, a medical term which means the sufferer doesn’t recognize that he/she is ill. Additionally, these illnesses have a strong genetic and psychosocial interface, so both her genetics and a childhood spent in an environment of disordered eating and other symptoms of anorexia increase her risk of developing an eating disorder exponentially.

In order to prevent giving out medical advice which is off the mark or potentially damaging to the point of terminal, standard practice for any advice columnist should be to consult an expert and disclose who they contacted.  If no expert is available, they should just shut up.

 

Brian Cuban

Eating Disorder Activist and survivor

Author: Shattered Image: My Triumph Over Body Dysmorphic Disorder

 

Jennifer Denise Ouellette

Mothers Against Eating Disorders

UCSD Eating Disorder Treatment Program Parent Advisory Committee

Rebuttal to New York Times Piece: Is Obesity O.K.?

In response to Carol Weston’s supposition (Is Obesity O.K.?) that we should quit not talking about obesity, I must wonder where she got the idea that we’re not talking about it incessantly? I feel bombarded by messages from every quarter that say that I—an educated, accomplished professional, mother of four successful adult children, happily married for 27 years, and both healthy and fit—am “less than” because thin is not also one of my “accomplishments.”

The reality is that our thin-focused, dieting, fat-shaming culture does nobody any good.  Eating disorders are being triggered in ever-higher numbers in part due to our rigid, black and white health messages—eat clean! sugar is demonic! fat is evil!—and obesity is still on the rise. 

The obesity epidemic is due to a complex interplay of agricultural policy, urban design, educational policies, social welfare issues and myriad other factors. If you want to address these under the premise that improvements in these arenas are good for all of us--in the form of affordable nutrient-dense foods, fewer food deserts, more walk-able cities, physical education and nurses back in schools, decreased crime so neighborhoods are safe for outdoor play, etc. than please do so.

Addressing the obesity epidemic at the personal level is ineffective, misguided, mean-spirited and wholly fruitless and the evidence is clear on this. Judging the girls as you describe yourself doing in your piece may make you “feel” like you are helping others, but you’re not; you are hurting them and it’s not an act of concern, it’s an act perpetuating the myth that the size of your body makes you morally superior to them. It does not.

Jennifer Denise Ouellette

Oh, The Places You'll Go!

Wonderful, time-consuming things are happening at Casa Juggling. My first post for UCSD is up! I am a hashtagging (#MAEDvocates), tweeting fiend over on the Twitter. Never anticipated having a long and fruitful exchange with these gals, but it happened--and 20K people or so had it on their timelines. If I have to change the perception of eating disorders one conversation at a time, I am willing to give it a shot.

The Barbi Twins

#TruthinAds is what started the conversation and though I don't think airbrushed images "cause" eating disorders, I think they warp ALL of us and make most people dissatisfied with their bodies and THAT is bullshit in my book. I really hope this legislation passes at some point. 

As I tweeted, it's one thing to sell us a fantasy, it's another to convince us it's reality. 

Back to the keyboard! Guest post on social media for F.E.A.S.T on deck!

I believe I will go for sheer nonsense or non-ED rant on my next post--y'all deserve a little of that for sticking with me! 

Happy Weekend, All!

 

Seeking Recruits for the Menopausal Hen Twitter Army

Life: She is naught but crazy at times.

The Yahoo article led to a TV Interview (hoping for more to come, I am doing a radio show for a station in North Carolina on Tuesday). I am certainly making contacts with some phenomenal journalists who care about telling a story ethically and that is nothing but good. I am hoping that #NEDAW next year will give me a chance to EDucate more people and spread awareness.

San Diego, California News Station - KFMB Channel 8 - cbs8.com 

A hilarious offshoot of all of this was that an insult in a comment on the Yahoo page (can't unsee some of it, though it's since been deleted. I am fairly sure that if what you got from that story is that my daughter and I are both "bang-able," you've been in your parent's basement for too long) has led to my Twitter Army having a name . . .

Introducing: THE MENOPAUSAL HENS TWITTER ARMY (Activism-ing on a Twitter feed near you)!

(I am still tweeting from @jugglingjenn, but I had to change my Twitter handle to Menopausal Hen Jenn 'cause that just has too fun a ring to it to pass up. If you're going to turn 50 anyway, why not embrace it fully?!)

Stay tuned for more craziness!

 

Thanks so much to reader and FB friend, Amy, for this. You know how sometimes you REALLY wish someone lived next door because you would get on together like a house on fire? That's how I feel about her!

Also, the Menopausal Hen Twitter Army takes those men brave enough to Warrior with us--and the first man to sign on the dotted line is the same dad I first met on a plane to Dallas (we were both en route to the F.E.A.S.T. Conference) when he recognized me from my FB profile pic and then graciously let me hitch a ride to the hotel in his rental car. Again, life is deliciously full of kismet and craziness sometimes!

In Which I Shamelessly Use My Impending 50th Birthday to Beg for Something

As you may know, I am in countdown mode to my 50th birthday. T-8 days to be precise. I was pretty angsty about the whole thing for about nine months and then I just sort of realized that it was happening regardless (God willing and the creek don't rise) and the internal whinging was not going to make a damn bit of difference so I ought to just move on. And I did. 

But . . .

50 IS a big birthday and it would be a shame to let it pass without some sort of bloggy celebration; after all I've been doing this since I was but a young woman of 42. (Good. Grief.) 

(Insert smooth transition that is just not happening for me writing-wise right now.)

A pretty amazing thing happened today; this piece was published on Yahoo. If you remember, the beginning of all of this was just last week, so it's been quite a whirlwind. The thing I'm most pleased about is all the new recruits to my long-dreamed of Twitter Army of Eating Disorder Awareness Advocates and Activists. People are beginning to believe!

What does this have to do with my birthday?

This journalist, Beth Greenfield, did a fantastic job with the piece; she asked insightful questions and her story reflects what we talked about--that's not always a given. I would love for her editor to see that a story like this--one that raises awareness and highlights advocacy--can generate traffic. 

To that end . . .

For my birthday, I would like all of you--regular commenters, intermittent readers and lurkers alike--to leave a comment on the Yahoo piece. If you would like to put icing on that birthday cake of mine, you could also retweet me--@jugglingjenn--as I am looking to take this story even further; national coverage would be a dream come true.

To get the message out that eating disorders are deadly diseases with a strong neurobiological component and deserve the evidence-based treatment and insurance coverage that is a given for other medical conditions is what I REALLY want for my birthday. 

Will you help a sister out? 

P.S. YES, you do have to have a Yahoo account to comment. It takes less than 30 seconds to sign up. I love you!

 

 

 

I Couldn't Make This Stuff Up, People

This weekend has been yet another one for the books, friends. What do you call it when a doctor refuses to let a patient have a close friend or family be present and ask clarifying questions during a medical consultation? One would think this passage from HIPAA might hold the answer:

Personal Representatives. The Privacy Rule requires a covered entity to treat a "personal representative" the same as the individual, with respect to uses and disclosures of the individual’s protected health information, as well as the individual’s rights under the Rule.⁸⁴ A personal representative is a person legally authorized to make health care decisions on an individual’s behalf or to act for a deceased individual or the estate. The Privacy Rule permits an exception when a
covered entity has a reasonable belief that the personal representative may be abusing or neglecting the individual, or that treating the person as the personal representative could otherwise endanger the individual. 

We've been having so much fun, it seems a press release was in order. If you comment on any articles about ER waiting times, please link back to this post. It's been helpful in bringing people here to learn about Jenny's cause.

FOR IMMEDIATE RELEASE

 

DYING TEXAS WOMAN IGNORED BY ER STAFF FOR 12 HOURS

HOUSTON, Texas (January 20, 2014)

 

On January 14, 2014 a young Houston woman, Jenny, was ignored by a Houston Emergency Room’s (“ER”) staff for 12 hours despite a dangerously low blood pressure and alarming thyroid levels.  On that January afternoon, Jenny’s home health nurse sent her to ER after Jenny’s blood pressure was dangerously low and she exhibited other potentially life-threatening symptoms.  Jenny followed her nurses orders and went to the ER.  Jenny sat in the ER waiting room, barely coherent due to her illnesses, for 12 hours before finally being examined by a doctor.

 

Even after ER doctors received Jenny’s lab reports that showed her dangerously low potassium levels, Jenny was left alone in the ER waiting room, without medical attention, for over 5 more hours. Once Jenny was finally moved to an ER exam room, it would be another 8 more hours, and at the incessant prodding of several Patient Advocates, before Jenny was finally admitted for treatment.

Dr. Richard Robinson, president of the Texas College of Emergency Physicians states, “Ironically the current environment in Texas seems to prove that the best medical centers and healthcare professionals in the world cannot help you if you are unable to access them in a timely manner.”

 

What happened to Jenny underscores Dr. Robinson’s comments and highlights the alarming report on Texas ER’s that was recently detailed in the 2014 American College of Emergency Physicians’ (“ACEP”)state-by-state report card on America’s ER’s (see: “REPORT: Texas receives D+ for its lack of emergency patient support”).  In the “Access to Emergency Care” category, Texas ranked a disturbing 47th in the nation.  That equates to an “F” on their report card: a failing grade.  That “F” almost cost Jenny her life.

Jenny’s health crisis is a classic example of the revolving door in Texas health care. Jenny suffers from several serious disorders that have resulted in life threatening medical complications. She has been unable to receive specialized treatment for her illnesses because her insurance carrier refuses to approve and pay for her treatment, even though it is a covered benefit. This lack of necessary treatment has resulted in Jenny’s worsening symptoms and repeated (and costly) trips to the ER, where medical staff are untrained about how to treat the medical complications of Jenny’s disorders, so they often choose to ignore Jenny. Her experiences demonstrate a consistent failure by the staff to meet accepted standards of care for the treatment of her disorders which states clearly, “Hospitalization should occur before the onset of medical instability as manifested by vital signs, physical findings, or laboratory test results outside of the normal range.”

Dr. Robinson also states in his report: “Emergency physicians typically interact with patients experiencing an acute medical or surgical event. Many of these interactions are secondary to the failure of patients to receive health maintenance services for chronic conditions in time to prevent acute exacerbations thereby leading to emergency department visits.”  This kind of “revolving door” health-care is merely a bandaid for a festering wound and cause patients like Jenny to deteriorate, suffer, and potentially die as a direct result.  

 

Rosewood Ranch, a treatment center specializing in the treatment of Jenny’s life-threatening illnesses has offered to contract with Jenny’s insurance so she can receive the life-saving treatment she deserves.  A bed has been waiting at Rosewood Ranch for four months. Despite numerous physicians urging Jenny’s placement at Rosewood, Jenny’s insurance continues to deny authorization.  Meanwhile, Jenny continues to decline, trapped in a revolving door of trips to the ER where she sits and waits, and will likely die in the near future.  

 

###

 

Cherie S. Monarch [email protected] (727) 422-3668

J. Denise Ouellette [email protected] (619) 602-5624

https://www.facebok.com/jennyasurviorslasthope

 

 

In Which Pedro Almodovar Knew What He Was Talking About

I cannot believe that for the first time since I started this blog, on Christmas Day 2007, I didn't post on my blogoversary. Okay, maybe I can believe it. I last posted on December 9 and last read blogs even before that; this is the longest blogging break I have taken since I started--and I am really missing all of you; Facebook is just not the same. 

For several weeks I have been juggling like never before, busier certainly than in the years when four kids went to four different schools and I volunteered my little heart out and cooked dinner and packed lunches and drove carpools and attended games and performances. 

I didn't plan on it getting to the point it did; it all snuck up on me. There's the full-time job of course, and Christmas is always busy and I have had another full-time job fighting for treatment for Jenny. On a nightly basis I was breaking my sacred rule about eight hours of sleep (six turns out to be very no bueno for me) and the exercise routine that helps keep me sane could not be shoehorned in anywhere. 

Then, a week before Christmas, our neighborhood was devastated by a neighbor's suicide. It was both very sad and added another level of need-to-do to my my already heaping plate. At this point in fact, I began to have a hard time seeing over the top of that plate. I started to sweat a little, but was sure I could do it all. When have I ever not? There were a couple of bumps on the homefront that added some stress, but I am confident it was the work project that was gifted to me via email, without prior consultation or notice, under cover of night, that was the proverbial last straw (me being the proverbial camel in this scenario).

In any event, it came to pass that on Friday afternoon, after attending the funeral for our neighbor, I found myself standing in my garage screaming at my husband, "I THINK I MIGHT REALLY BE ON THE VERGE OF A NERVOUS BREAKDOWN!" as he screamed back at me, "I BELIEVE YOU!"

It turns out the truth shall set you free. I have taken a few-day-hiatus from supporting Jenny--the point of a team is to hand the ball off now and then, right? I have taken down Christmas (note-to-self: normal people probably say "I can't take down Christmas because I have too much to do," while I say, "I have to take down Christmas now so I can think to do all the other stuff I have to do." I probably need a therapist). I have done some laundry and graded some work and dusted and swept.

I have just finished with a nice, hot bath and will be getting to bed soon. 

I have taken my son and his girlfriend to the airport and have assured her that she truly has seen this family at both its best and worst during this trip. If she keeps coming back, it won't be because she's not seen "the real us."

Next time (let's be realistic, there will likely be a next time--I never expected to be putting the hours in on Jenny's situation as I have, but once you get started, what are you going to do? When Jenny gets into treatment I will be floating on that high for a long time and it will be amazing to help and see her rebuild her life), I hope to recognize when I need to put on my oxygen mask before it gets to the point it did. 

Christmas itself? Magical in every way. From the brunch (outside with mimosas under a sky and sun that dazzled completely) to the mid-day bike ride to the incredibly thoughtful gifts that everyone gave and got to the fact that our guests included two dogs (belonging to my stepsis) and two kitttens (my grandkitties) to the delicious dinner--it was Christmas as Christmas should be--a celebration of family and love and generosity (also flexibility--Grownup Guy had to work part of the day so we did presents at night--I was a victim of the rigidity of "tradition" as a newlywed and I will never put that on one of my kids. Never.).

Christmas 2013: MVP, Mandy (holding the totally random Noel Duck), me, Mr. Fix-it, Social Butterfly, Danger Boy. Tree courtesy of the Christmas spirit of a stranger. 

As for blogging . . .

I think it might just be a safety valve on the pressure cooker that being me can sometimes be. I'll be back.

 

Jenny: A Survivor's Last Hope

If you are also my Facebook friend, you know I am knee-deep in something huge. Here's the gist. I'm trying to post it on the FB page I have up, but have a little learning curve to meet first. Please, please, please, please, please LIKE this page and share it on your FB. Thanks! More later--Jenn

Who is Jenny and what is a PITA Mom? Jenny C. Rocha is a resident of Baytown, Texas (outside Houston). She’s a 33-yr. old woman with a 25-year history of anorexia and bulimia. She was born profoundly hearing-impaired and her life up to this point has been marked by trauma, neglect and dysfunction. She is also a survivor—if she wasn’t she’d have been dead a long time ago. Jenny’s fighting spirit is what brought Jenny and the PITA Moms together—trapped in a house (not truly a home) with no transportation and little money, she knew that SHE herself was the only person that could save her from her eating disorder (ED) and she knew she desperately wanted to live. She set out to build a Facebook community to find the support she needed to save herself; it was a Hail Mary pass and she knew it. The PITA moms (even before they knew they were doing it), went long, caught the pass and now Jenny and the PITA Moms are fighting together to maneuver past all the blockers (Medicare, a nonsensical Medicare system, unfeeling bureaucracies) and make it the end zone—treatment for Jenny.

Who are the PITA Moms? The PITA* (Jenny calls us pain-in-the-asses for our firm, loving stance: not eating is not an option with this crowd) Moms are a collection of nine women from across the United States, Canada and the United Kingdom who have had daughters with eating disorders and have transformed into passionate advocates working to improve clinician education and access to treatment for those suffering from this tragic, insidious and misunderstood disease. Individually Jenny and the pre-PITA moms noticed one another on ED forums began talking and coalesced into a magical happening. The PITA Moms have spent (to date) three months providing meal support to Jenny via Skype and working on treatment for Jenny. 

As it stands now, there is a bed at Rosewood Ranch Eating Disorder Treatment in Center in Wickenburg, Arizona (Texas has no facilities able to take someone with the myriad medical issues Jenny has and with a permanent feeding tube). There is also a denial letter from Amerigroup insurance company (her coverage is through Texas Medicaid) stating that residential treatment is only for serious cases (yes, it’s okay to laugh at this point). Houston Methodist sees and admits her frequently, puts Band-Aids on her medical issues (things like a potassium level so low she is at risk of heart attack, and a TSH level so high that an MRI reveals dangerous swelling of her pituitary gland) and puts her in a taxi home (12/7/13 that was at 11 p.m. on a freezing night). 

Will you help us stop this madness and put pressure on Amerigroup to cover the life-saving treatment that Jenny C. Rocha needs? Please ask your friends to like this page and follow @JugglingJenn on twitter and re-tweet #txforjenny tweets. 

Time Warp Tuesday: Earlier this Day

Did you every write a totally clever intro full of wit and verve about how busy you are and how you get everything done by making time in your day to simultaneously run on your trampoline, respond to emails and texts and watch a DVR'd episode of Criminal Minds and/or to edit photos for posts at stoplights and then lose the whole damn thing because you were so tired you stupidly answered yes to the question about navigating off the page without saving your changes?

Me neither.

This has got me hot enought to be tweeting at Yahoo as the site sponsor for at least one site that sells this costume.

 

This would only be more disgusting if it was sold alongside a cancer patient costume consisting of a bald wig and an IV pole on which the hot patient was dancing.

I'm not going to bother identifying the other brouhaha that's got me worked up.You'll figure it out. I snapped this picture after work because I don't have hair days this good very often and I wanted to memorialize it. Then I thought . . . this would look even better if I held a sign over my head that said, "I've got a graduate degree, a challenging career, a 25 + year marriage, I've raised four good people and I volunteer about 20 hours a month . . . What's YOUR (expletive deleted) excuse?" 

Not that it will come to news as anyone that I'm over standing by silently while the damaging and unrealistic expectations of our society brainswashes women into trying to fulfill impossible stereotypes, but really, you could stick a fork in me.

I was originally joking about the sign over the head idea (which I must credit to Cassie via FB), but now I kind of like it. If I wanted to do something with it, could I get volunteers to do it with me?  Maybe just pick one accomplishment that has nothing to do with looks, make a sign, have someone snap your photo and email it to me?

Thoughts?

Also on the feminism front . . . Lean In by Sheryl Sandberg. Loving it.