June 29, 2010: What WERE we thinking?

I wrote this almost two years ago, June 29, 2010. I am fascinated reading this now, one week before the release of our book, Perfect Chaos (St. Martin's Press, 2012). It all still holds true!

One day after Linea's graduation we received an offer from a major book publisher for our book. WOW!! We were and still are ecstatic! First came the news from our agent that the editor wanted to talk to us. Two working days later we received an offer from the publisher and after a couple of days of back and forth with our agent we accepted it. We were both completely excited and the whole thing seemed impossibly surreal. The book proposal went into submission the week of June 1st and we received the offer the next week. Our agent told us the speed of this was quite unbelievable particularly in this current market but we attribute it to her ability to push us further and further with a better, more concise and compelling proposal. The excitement continues but the first night (very late into the night, actually) it hit me. This is the real thing. Our book will be published. In stores and on bookshelves across the nation and perhaps beyond. What WERE we thinking? Suddenly I was insecure. The "what if's" flew like bats into my bedroom and into my worrying mind. What if we had bad reviews? What would a negative comment do to my daughter? What if my colleagues thought I was not "academic" enough by sharing a very personal memoir of a devastating illness? I hadn't had such small (what about the cover??) and long-range (what will my grandchildren think about this twenty years from now?) worries since I the births of my two daughters. Around and around my mind went until finally it settled on trust in our work, our agent, our editor and the world at large. We are committed to sharing our story with continued efforts to increasing understanding and support for people with mental illnesses and their families and to reduce the stigma surrounding mental illness that adds another layer of pain to these illnesses. What a journey!

It's All in Your Head!

Are people more willing to pay to avoid physical illness than mental illness? The study might surprise you! I have been so busy with my daughter's and my book, released May 8th (Perfect Chaos - St. Martin's Press, 2012)! I haven't blogged much so thought I would share an article in which I interviewed with the author, Reyanne Weaver. It is a rather long article but I think also very interesting. Take a look at EmpowHer. It's not until the second page that I FINALLY get to give my opinion so if you are interested, keep reading!!

An excerpt, "“Neighbors and friends rally around someone with breast cancer while the doctors determine which treatment option is best based on sophisticated diagnostics,” Johnson said. “I do not believe the same level of support exists for a woman who is hiding in her home battling the overwhelming [effects] of depression.”

Fighting the Good Fight: When Insurance Won't Cover Vital Treatment

Here is a blog I wrote for my good friends at The Balanced Mind. If you haven't visited this wonderful resource, do so! The blog is a long one but it was a long "fight"!

I said that once the fight was over I would write about it. It is not quite finished, but, close enough! I was newly invigorated to write this when NBC Nightly News aired a piece recently on eating disorders and boys. The final comments included what parents should take note of and the caveat, “you may have to fight your insurance for coverage”. Well, yes. And fight we did. Here is the short version of a very long story and a two inch file.

My daughter was diagnosed with an eating disorder, and, after an evaluation, the recommendation was a 30-day partial in-patient treatment program at $1,000.00 per day. You can do the math. Our insurance company approved this treatment plan, but after careful research and discussion with the psychiatrist and psychologist, an out-patient wraparound team approach was developed. This included treatment from her psychiatrist, psychologist, eating disorder (E.D.) specialist and a nutritionist; as well as a significant commitment from family to eat every meal together for at least the first month. Linea met with her psychologist and E.D. specialist once a week. She met with her nutritionist twice a week for the first few weeks and then once a week. The insurance company covered three treatments from the nutritionist and then denied coverage. Why, you ask? It is the policy of the insurance company to cover THREE visits with a nutritionist in a lifetime. Yes, you read this correctly. 

If she had been in the in-patient treatment program, she would have seen the nutritionist once or twice a day for 30 days. The insurance company would have covered that. When asked why they wouldn’t cover the outpatient treatment from a nutritionist they replied, “We don’t have the codes.” Oh my! I was so irritated. After discussion with Linea (and her approval) I submitted an appeal to our insurance company with the following:

1. A table comparing the approved partial in-patient treatment ($30,000) with 30 days of outpatient treatment ($7,000), itemizing the costs of each treatment professional. As well, I compared the cost of 30 days of hospitalization if she did not receive treatment.

2. A letter from her psychiatrist referring to American Psychiatric Association guidelines, which state that eating disorders cannot be treated without a nutritionist.

3. A letter from the past president of the American Eating Disorders Association and her treating E.D. specialist stating the same, as well as the risk of long term treatment without the participation of a nutritionist.

4. A letter from her psychologist stating the same, and her opinion that the outpatient program would be successful, ultimately costing the insurance company less than the partial in-patient 30 day treatment program.

The appeal was denied. Reason (in case I missed it the first time): "The insurance policy provides coverage for only three lifetime visits to a nutritionist". "But", they wrote, I could "go to a second appeal". Okay, yes I will.

The second appeal, which supposedly went to medical personnel this time, rather than clerical, included all of the above and more documentation of the research on eating disorders, as well as letters that spoke of the disparity of services. Second appeal: denied. They wrote that I could talk to my Human Resources office. Okay, yes I will. By then, I was not going to let this go. After 3 months, at $110 per visit, it was adding up. More than that, it was discrimination, and it was offensive. The insurance company was overriding the treatment plan of my daughter’s doctor. Eating disorders are life-threatening. Recovery is possible with research-based treatment.

I approached the director of compensation and benefits in the HR office at my work place. Again, with permission from and discussion with my daughter, I provided him with the packet of information, and I added an additional letter. I compared treatment from a nutritionist for a person diagnosed with an E.D. to providing physical therapy to a person recovering from a stroke. THREE visits per lifetime??? I added, “I am very committed to assuring that people with mental illnesses receive the coverage and care they need as comparable to those with 'physical illnesses', even though we know that mental illnesses are a brain disorder and therefore are 'physical'. Thank you for supporting this and joining me in 'walking the talk' of social justice.”

The response from the HR director was, “My conclusion is that the nutritionist portion of the treatment plan described in (the psychiatrist’s) letter is eligible for coverage under the University’s PPO medical plan. We judge these services to be medically necessary. Our office will instruct (the insurance company) to take necessary steps to reprocess claims submitted by the nutritional therapist, and to prepare the claim system to accept future related claims that are submitted according to the same treatment plan.”

Of course, there was one more roadblock to slow us down. All the invoices had to be resubmitted, and since these were already paid for, I had to send invoices showing this. The reimbursements were processed again, one-by-one and very slowly, with checks sent to the nutritionist, who then had to run these through her business and send me a check. You can see why most people just give up. I would guess that most young people in the midst of an illness like this would not be able to fight this system. Hopefully, there are family and friends that they can ask to help and that can push back at the health care system.

The entire process took over a year to resolve. I am still waiting for the last two reimbursements. I had no idea that my HR director could assist with this. I had no idea how much effort, time and documents it would take. Please share your experiences of seeking and getting the coverage that your child deserves. Help those who can’t figure this out on their own. Together we can make a difference.

Finding Peace

Parents often don’t have time to reflect (or treat) the toll their child's illness is taking on them. Mom and/or dad are too busy trying to manage medical treatment, the emotional impact on siblings and other family members, and one-on-one care for their child. When a child or adolescent has a mental health crisis, it affects the entire family.

As a parent of a child who has been critically ill with a mental health disorder, have you experienced any of these symptoms? Read more at The Balanced Mind.

It Was More Than Teen Angst...

Depression affects students of all academic levels, social positions and economic statuses.
Depression in children and teenagers has devastating impact on the crucial stages of social, emotional and cognitive development, with far-reaching and negative impact on these young lives.

One in five young people have some sort of mental health condition; one in eight has a serious depression.

Despite these daunting statistics, a mere 30% of these students receive any sort of intervention or treatment. The other 70% simply struggle through the pain, doing their best to make it to adulthood. If this were the case with child and adolescent cancer there would be an outcry from the public.

I know these statistics well. I know that educators have a unique opportunity to recognize and support students struggling with depression yet often are either unaware or simply aren’t sure of the severity or need for intervention and therefore do nothing. Parents may well be in the same camp. Is it “teenage angst”? Growing pains? Typical of a child who may be in the middle of a family crisis? A young person having problems with friends, feeling left out or deserted?

My daughter’s depression snuck into her life during her high school years (if not before) and even though I was teaching about depression to graduate level students, I did not recognize it for what it was: severe, life changing, and needing intense treatment. Yes, I knew she was anxious and sad and confused about her friends and their own issues. I knew she worried about where and what life would hold after she graduated from high school.

I was concerned enough to talk her into seeing a psychiatrist and therapist. Both diagnosed her with depression. The very words “clinical depression” startled me. She was still getting high grades in college preparatory course, participating and excelling in piano and voice as a young musician and keeping up with her friends and activities. She spent a few months taking an anti-depressant and then, unbeknownst to me, dumped the remainders down the toilet. We spent hours talking and she cried and she said she felt better and then she worried and then she thanked me for listening to her. We all assumed it was “situational”. Whatever the cause, it was depression.

I have had a unique opportunity to reflect on this as I was working my way through the final edits of the book that I wrote with my daughter, Linea. Her work is “real time” journals written in the midst of her depressions. As I read her words and mine I thought about what I should have done differently and eventually thought about what I did well, from a mother’s perspective, not a professional’s.

There were a couple of things I would have done differently but they are both big ones.
I assumed she knew that if she did not like the first therapist she saw she could go to another one. She didn’t know this. And if she did it would have been very difficult for her to change therapists or doctors without a lot of support from me. She didn’t know she could, she didn’t know how and she didn’t want to hurt anyone’s feelings.

I would have been much more cautious about her depression and encouraged (harassed? forced?) her to continue under a doctor’s treatment for much, much longer. As she says now, “Everyone benefits from a therapist!”

I think I did a couple of things right and Linea certainly contributed and taught me many things during our journey. We had and continue to have a very honest relationship. I know she didn’t tell me everything and it was only after reading her journals that I knew how severely depressed she was but she did talk to me about her worries and fears. I tried to never be judgmental or shocked by anything she told me or anything I read. I always trusted her to do the best she could and I always believed in her fierce desire to be well but I eventually realized that the depression was way beyond what she was able to handle on her own. It just took me too long.

My knowledge and understanding of the research and treatments for depression have shifted due to my personal experiences as a mother as well as a daughter of beautiful and strong women who battle depression. Depression is a brain disorder. Yes, there is situational depression but this, too, can turn into a depression that changes the thinking process, messes with memory, pushes away friends and family, causes physical symptoms and, as my mother says, is “more painful than any physical pain” she has ever experienced. And she has experienced much physical pain in her lifetime. I spent too much time trying to manage and “fix” the environment around Linea rather than helping her find the treatment to fix the illness going on in her brain.

I am thrilled with the Balanced Mind’s new partnership with Erika’s Lighthouse. I am moved and inspired by the voices of the young people featured on the videos. I encourage all of you to share with others and take full advantage of the webinars, resources and materials available about depression. Let’s make sure that our young people who have depression receive treatment and that everyone knows the symptoms and where to seek treatment for depression. Depression is treatable. Untreated depression is deadly.

Posted on The Balanced Mind blog.

Should I have known?

I am immersed in the edits of the book that my daughter Linea and I have written together about our journey through bipolar disorder. As I work back through more than 300 pages of writing, I am struggling with the questions that the editor keeps throwing at me in the margins.

“How did your daughter convince you she didn’t need to see a therapist?”
“How did she talk you out of seeing a psychiatrist for two more months?”
“What were you thinking when she convinced you she was feeling better and that she should go on her planned trip outside the U.S.?”
“How were you so shocked by a potential diagnosis of bipolar disorder when you teach about it?”

I had to give a lot of thought before formulating my response. How had I not known?
When an illness is beginning its invasion, it can enter quietly, mysteriously, or with great fanfare. Reading back through the chronicles of the years leading up to her diagnosis, yes, I can now see it coming during those early years. But at the time, we never suspected a severe mental illness was on its way and that it would try its best to destroy her. I am sure you know exactly what I mean as I struggled with this.

In that time and place, I think we convinced ourselves that it (this depression, soon to be diagnosed as bipolar), was due to stress from school, worries about her future, fears for her struggling friend, all wrapped up in her drive to do and be her best. In looking back, there were indicators of what was to come but at the time these were merely hazy suggestions, whiffs of a more serious illness lurking.

After many discussions of a diagnosis and a major crisis, we met again with Linea’s psychiatrist. Linea sat there without speaking and I finally asked him, “How will we know if it is bipolar disorder?” He said, “We will have to wait and see.” I felt like I couldn’t breathe and my heart hurt as we left his office. Wait for what? It felt frightening and overwhelming and I didn’t know if I could keep from simply lying down on the floor and weeping. But I didn’t, and together we all “waited”. Eventually the pieces came together, the diagnosis aligned with her symptoms, and the treatment began to work. There was hope and recovery and stability.

I share this because I know now that we did the best we could given how this illness unfolded into her life. I also know that we wouldn’t have done anything differently had we known. We were present to her and with her, we listened, we waited and we trusted her to ask for help when she could, and when she couldn’t we made decisions for her. It has been painful, and I would give anything for my daughter not to have this diagnosis, but I also know that it has changed us all in many incredibly positive ways. She is an amazing young woman and every day I am so very grateful for her life. I wish you peace in your own journeys.
(posted on the Child and Adolescent Bipolar Foundation website under Blogs)

If it Doesn't Feel Right

Bipolar disorder takes a family on a roller coaster of brain-driven moods right along with their child. In addition to the depression, the anxiety and mania, there are other symptoms that raise their fearsome heads and go after our children. Parents of children under the age of 18 are responsible to manage the many aspects of this illness and to help their adolescent move into adulthood with the skills to do this on their own or to have a support team in place for times when this is not possible.
I write this post without offering words of wisdom but rather to simply share a recent episode in our own lives with the hope of building community and perhaps offering encouragement to hang in there when times are tough.
My daughter, Linea, had been relatively stable for the last few years but as the leaves began to turn and our part of the world prepared for winter, depression and anxiety crept back and were soon running over her life. An eating disorder emerged and she began to rapidly lose weight.

ED had stalked her in the past, but it hadn’t received the treatment it deserved. At the time we either weren’t aware of the severity or it retreated before causing us to take too much notice. I think in the midst of her other symptoms it was lost amongst the rapid cycling. Now it was front and center.

Something Wrong
It took a few weeks but it suddenly hit me very hard that something was seriously wrong and needed to be addressed. There was a confrontation and discussion and a plan to seek serious treatment for her. Once again I was into something that I “taught” in my graduate classes but I realized I knew little about the research behind the treatment. She had an evaluation at an eating disorder clinic where she was diagnosed with ED. Seeing the words on paper was shocking. Hearing the statistics on outcomes for people with anorexia was terrifying. We were told that the severity of her illness demanded a partial inpatient 30-day treatment program (at the cost of $30,000.00 minimum). We were frightened and believed that these “experts” knew what was best.

But, I couldn’t sleep. Linea was so exhausted from her illness that she no longer wanted or could make decisions. I spent two days calling her treatment team and anyone else I knew in the field of ED.

Researching Treatments
My research on treatment strongly pointed to “individualized plans” that addressed the specific needs of a patient. Linea didn’t just have an ED, she had bipolar and her own unique temperaments and personality that didn’t seem to fit into the treatment program I observed at the eating disorder clinic. Finally we put together a wrap-around program for her that included her psychiatrist and her psychologist, both providers who she had been seeing for five years and who knew her well, and a nutritionist and additional psychologist, both who specialized in eating disorders. Everyone worked together. Communication was a key component. Her plan included not only therapy twice weekly, but documenting everything she ate and being held accountable for “turning the train around”, as her nutritionist described it. It meant eating lunch and dinner with family or friends every single day for at least two months or until her weight was stable again. This was a huge commitment on everyone’s part but once this plan was made I slept through the night. It felt right.

Although Linea is a young adult, living independently and managing her health care, there are times when help is still needed.

Happy Ending?
I was thankful that she was so open with us and asked me to go with her to doctor appointments and to the initial evaluation. The week of hesitancy and unease about the treatment plan was difficult as I tried to support her but still listen to my own feelings or intuition about the plan. It didn’t feel right and I have to say that it took a lot of courage for me to push back against the “experts” at the eating disorder clinic.

Linea has gained the weight back and, although she is still receiving treatment for the ED, she is once again in control of her illness. From her initial grief and anger about it “coming back” she has new skills, confidence and strength in managing her illness. I, too, was hit hard by the reminder that bipolar is life-long but was once again thankful that we have the resources to provide treatment. I am more committed than ever in the fight to assure everyone has such support.

The Insurance Company
Stay tuned for an update…I am still fighting the insurance company about paying the nutritionist. They initially approved the ED treatment program that included a twice daily meeting with a nutritionist but it was “built into the total cost” and didn’t have a “code”. Our plan changed January 1, 2011, to “three visits to a nutritionist in a life-time; exceptions made for diabetics”. Oh yeah?!?! The American Psychiatric Association states that ED can’t be treated without a nutritionist. I have submitted an appeal that includes letters from her psychiatrist and psychologist. I made sure they knew how much less the plan we put together cost in comparison to the partial in-patient program. I also pointed out to them how much less expensive it was than hospitalization. The appeal has now been moved up to the next level. We shall see….

I suppose I can’t resist a bit of advice. You know your child best. You are the expert. If it doesn’t feel right gather all the strength you can find and do some research and speak up. Share your story with others so that together we can make a difference in the system of care for children with mental illness.

Published on the Child and Adolescent Bipolar Foundation's Blog.