Oh really? Enter Abi. #dmdd

Abi’s bipolar disorder has been stable for a year now. That means we haven’t touched her medications, and her moods have remained even. That is one major key factor in a new diagnosis being added to her medical file: DMDD, also known as Disruptive Mood Dysregulation Disorder.

What is DMDD?
A. The disorder is characterized by severe recurrent temper outbursts that are grossly out of proportion in intensity or duration to the situation.
The temper outbursts are manifest verbally and/or behaviorally, such as in the form of verbal rages or physical aggression towards people or property.
The temper outbursts are inconsistent with developmental level.
B. Frequency: The temper outbursts occur, on average, three or more times per week.
C. Mood between temper outbursts:
Nearly every day, most of the day, the mood between temper outbursts is persistently irritable or angry.
The irritable or angry mood is observable by others (e.g., parents, teachers, peers).
D. Duration: Criteria A-C have been present for 12 or more months. Throughout that time, the person has not had 3 or more consecutive months when they were without the symptoms of Criteria A-C.

Almost a year ago, well after Abi’s depression had lifted (and it’s been over 2 full years since we treated any mania) I returned to her doctor and said, “Something else is going on – and it’s not bipolar related.”

Fully treated and now stable bipolar disorder revealed a subset of symptoms that had always been present but we didn’t know they weren’t related to her bipolar disorder. We had previously tried to treat these symptoms (starting as young as 6 years old) as ADHD with ADHD medications. All attempts failed.

This subset of symptoms didn’t respond to ADHD medications, and remained unchanged with Abi’s elevated moods, depressed moods AND were unaffected by her entire course of bipolar medications over the last four years.

So, a year ago, her doctor started her on a new medication called Amantadine and she entered a medication study, a trial of sorts, though in the beginning, she was an “off label” user.  We were using this medication to treat symptoms akin to DMDD that she presented with, because per the DSM-5, a child diagnosed with bipolar disorder cannot also have DMDD.

“The diagnostic and statistical manual of Mental Disorders, 5th ed. (DSM-5) created the new diagnosis of disruptive mood dysregulation disorder (DMDD) “to address the considerable concern about appropriate classification and treatment of children who present with chronic, persistent irritability relative to children who present with classic (i.e., episodic) bipolar disorder” (American Psychiatric Association 2013, p. 157). “

In full text, it is interpreted to mean that they can have one… or the other, but not both.

Oh really?  Enter Abi.

Abi previously presented with nearly six other conditions that would have been problematic for a DMDD diagnosis, but all are identified, treated and stable under her bipolar treatment. And still the subset of symptoms persisted.

Abi’s doctor has hundreds of patients taking this medication as part of the study and will be writing a paper of some substance for a medical journal. A large portion of his focus now for the paper is challenging the DSM-5’s claim that a child cannot have both bipolar disorder and DMDD based on Abi’s case.

After nearly a year of treatment, with incredible success in treating all symptoms and drastically improved cognitive clarity, social functioning, with a significant reduction in irritability and a decline in temper and triggers, all indications support a diagnosis of DMDD for Abi, who also has bipolar disorder.

The addition of DMDD (a relatively new diagnosis) to the DSM-5 comes hot on the heels a 40-fold increase of diagnoses of children with bipolar disorder in the past decade, with a broad set of diagnosing symptoms but then a list of precluding comorbidities. Both things can complicate the diagnostic process and hinder a parent and doctor from being able to properly treat a childhood mood disorder, so we are looking forward to seeing what medical breakthroughs, procedural and DSM-5 changes Abi’s doctor is able to achieve with his study and his paper.

the empty room

The Empty Room

*****

I woke that morning alone with my husband’s lingering depressive energy haunting our bedroom in thick charcoal shards. I want to reach out and touch them, but don’t for fear of my hands being shredded by the ragged edges. I don’t dare rustle them like chimes as I reach for my phone, because they aren’t light or pulsating; no. They will crash down, bury, and suffocate me.

The call goes straight to voicemail. My husband doesn’t answer.

Something is wrong.

I have been tracking deepening blue shaded dots of severe depression symptoms on his chart for weeks but this is different.

Send.

Voicemail.

The charcoal shards are scratching me.

I know my husband is tired. Sad. Defeated. He had recently said, “Worthless.”

Dark blue dot.

It’s infuriating and unfair; he’s done everything right. Years of treatment aren’t working. Medications aren’t working. Therapy isn’t working. Nothing is working.

We are broken.

I push the covers off me and slide out of my bed deliberately. The shards scare me.

Trepidation builds as I rush past our infant daughter’s bedroom where she’s still sleeping. I pause just outside the main hallway. The cold from the hardwood floors chills my bare feet as my eyes dart back and forth between the living room and the kitchen.

Nothing is obviously out of place but then again everything was. It was too still and quiet.

Frozen.

I begin to panic, slowly at first, then much quicker as my spirit registers despair. Hopelessness clings to me as I cross the kitchen in three escalating heartbeats.

I throw open the door to the garage, and I’m no longer breathing.

Is he?

Unfathomable is the fear in that singular moment between what is anticipated and what is reality.

The garage is empty.

My husband is not hanged from the lone wooden beam.

The garage is empty.

No body.

Nobody.

Except me.

I sink to the concrete floor, relief crashing in on the fear, making my eyes burn and my breath hitch awkwardly.

Realizing I am still clutching my phone, I hit send again. My husband answers. He’s at work.

I tell him where I am and what happened. With a small, shaking, tear-filled voice, I ask, “Why didn’t you answer your phone?”

He tells me it didn’t ring, he must’ve been in a dead spot in the shop.

Strange, hysterical laughter bubbles out of me as I sit there in the garage. Only he would make such an inappropriate joke.

A glimmer of hope joins my relief, forcing out some despair. A charcoal shard dissipates in our bedroom.

“You’re horrible,” I tell him. And I mean it.

“I know,” he replies, in an exchange we’ve had hundreds of time, “but I’m okay.”

He wasn’t okay. But he was alive.

*****

I got my husband into his doctor that afternoon and we made significant changes to his depression treatment. I don’t know if he was suicidal, or would have become suicidal. Luckily, we never had to find out. His doctor dubbed me “his thermometer” as I always seem to be one step ahead of what he is feeling. I am incredibly sensitive to his energy and aura, an anticipator of his moods and needs.

Two months later, he was formally diagnosed with Bipolar Disorder, an illness, in hindsight we know, he has battled his entire life.

We got a full course of bipolar disorder specific medications for him and we got resources for me.

People who suffer from mental illnesses sometimes cannot “go get help.”

They need to “be given help” by spouses, children, family, friends, coworkers, church members, and even strangers.

Those spouses, children, family, friends, coworkers, church members, and even strangers need to know HOW to give help and WHEN to give help.

I learned through NAMI, the National Alliance on Mental Illness and that is why we raise money every year to continue to fund the programs that saved our family.

We cutesy it up with Abi’s calendar sales, the kids’ painting raffles and other give-a-ways, but the unfiltered truth is there was a morning I woke up to the horror of suicide and thanks in large part to NAMI, I now share a story of victory and life, not heartbreak and devastation.

If you would like to help fund the programs (details of the programs are below so check them out!!) that saved our family, and continue to save the lives and families of the millions in the Greater Houston area, consider donating to the walk this year. Links to the kids’ fundraiser pages are below. Each $10 donation to Deklan, Ellie, or Abi’s page earns you a raffle ticket into their watercolor painting raffle. Deklan and Ellie have a $100 goal (they are 33% of the way there)!! Abigail has a $1750 goal (65% of the way there!!) and has 20 SIGHTS OF THE EYE calendars left for sale. Calendars are $20 each.

Deklan’s NAMIWalks Greater Houston 2017 Fundraising Page

Ellie’s NAMIWalks Greater Houston 2017 Fundraising Page

Abi’s NAMIWalks Greater Houston 2017 Fundraising Page

Here are a few of the amazing NAMI Greater Houston programs that are funded by yearly walk donations. My oldest daughter, Abigail (now age 13, also diagnosed with bipolar disorder just weeks after my husband) has plans to become involved with several of these programs as both a participant and a speaker in the next few years.

EXAMPLES OF EDUCATION PROGRAMS
Family to Family (My husband and I took this class!!) The NAMI Family-to-Family Education Program (English and Spanish) is a free, 12-week course for family caregivers of individuals living with a mental illness or brain disorder.
Great Minds Think Alike  This program is for youth, ages 12-17, with mental health needs. Great Minds Think Alike (GMTA) is designed to provide teens with the skills necessary to take a leadership role in their own treatment. GMTA helps teens develop coping methods to deal with the daily realities of living with their own mental illness, as well as initiate success in their everyday activities. In GMTA classes, each student is given a workbook which provides an opportunity for them to actively participate in the lessons. The goal of GMTA is to empower youth to gain a better understanding of their personal needs and to develop the steps they need to take in order to meet those needs. Through GMTA, teens will learn how to be active in their personal treatment and recovery plan, while encouraging others around them to do the same.
NAMI Basics NAMI Basics is the new signature education program for parents and other caregivers of children and adolescents living with mental illnesses. The NAMI Basics course is taught by trained teachers who are the parent or other caregivers of individuals who show signs and symptoms of mental illness between the ages of 0-18. The course consists of six classes, each lasting for 2 ½ hours.

EXAMPLES OF COMMUNITY OUTREACH
Ending the Silence Helping middle and high schoolers understand mental illness makes a big difference. We can teach them about the warning signs for themselves and their friends. NAMI Ending the Silence helps raise awareness and change perceptions around mental health conditions
In Our Own Voice  In Our Own Voice (IOOV) is a unique public education program developed by NAMI, in which two trained consumer speakers share compelling personal stories about living with mental illness and achieving recovery.
Great Houston Support Group

 

 

 

spontaneous, whimsical, and fickle

Abigail and I just attended our 5th NAMIWalks Kick Off Luncheon, as we are gearing up for our 6th NAMIWalks event on May 6th at Sam Houston Park in downtown Houston.

We were seated at Table 1, which if you don’t know how these functions work, is pretty prestigious. We were amongst a higher up city councilwoman, a local news anchor, the county sheriff, the keynote speaker, the NAMI board president, and a national NAMIWalks manager.

In this grouping, it is Abi who carries the prestige, not me. As everyone repeatedly asked where I fit in, my line was, “I’m her driver,” because “Uh, national t-shirt winner?” just doesn’t hold cloudt amongst the mental health movement achievements at the table.

It is always encouraging for me to watch Abigail at a NAMI function, where she shines, she’s understood and embraced, and can work the room with people of all ages. She seems to really have a place there, not just now, but possibly in the future, as well.

Now, this may come as a shock, but I worry deeply about Abigail’s future. You are probably thinking, “What parent doesn’t?”

But I am not talking about what high school sport will she play and will it get her a scholarship? Will she attend college? Will she get married and have kids? What will her career be? Will she be happy?

No, as we’ve watched her bipolar disorder affect, shift and change her through her infancy, toddler and now her adolescent years, I worry about suicide with depression, teenage pregnancy with wildy symptomatic mania, homelessness, hunger, the possibility that we will going periods of time not knowing where she is or how she is, unemployment, and will she manage medication-compliance when she’s no longer a minor and not legally under our care? Will she fall victim to an abusive relationship that she doesn’t even realize is abusive because her social skills are still not developed? Will she eventually end up in jail?

Will all the time, money and energy spent doing all the things we’ve done for her and with her be for nothing because: we failed.

It’s a wild, fast, downward spiral that doesn’t end.

Then, along came our keynote speaker, Emmett Biffle. We’ve met him once before, and heard him speak at the NAMI Texas event where he and Abigail both accepted awards for 2016.

Abigail identified with him immediately, nudging me, as he walked up there with his noise cancelling headphones in hand, telling us that he was in between meds and was symptomatic; he may need them during his speech. His headphones are white; Abi’s are hot pink.

Emmitt is a teenager living with schizoaffective disorder which he comically and accurately described as the demon baby of bipolar disorder and schizophrenia. During his speech, he gave a piece of advice that I am not sure he understands the true value of.

He must know it’s good, but there is nothing better for me, someone who cannot understand the illness having never experienced the depth and fear of having the illness, to be given good advice on dealing with the illness, that can then be applied to the care of those in my family who need it.

At a particularly impassioned part of his speech, this is that good advice he shared that he gives to people:

“Don’t worry about your whole life; get through your next few seconds… minutes… and hours. They are yours. What will you do with your next hour? Make it brighter.”

For me personally, this goes against who I am to my very core: a planner – a loooong time planner. I knew when I was very young that I wanted to be good in school, graduate, get married young, have babies young, be a “fun mom,” cook, and eventually own a house in a neighborhood. I envisioned the life that I have now. I planned it, I executed it — long term goals where the seconds and minutes of the planning were not inconsequential but were not what needed to be thought about. It was “bigger picture.”

And I have been trying to apply that to Abigail, which I realize with Emmett’s advice, is all wrong.

She is spontaneous, whimsical, and fickle. She’s a second to second, minute to minute, day to day person. It’s just one more way I cannot wrap my brain around her, and why I definitely need to keep taking her to NAMI functions.

Some things have remained the same for her: longevity with NAMIWalks, her desire to work with animals as a career (zoologist) and her photography, but otherwise, I really need to lay off the long term planning. It’s simply not who she is.

So on the advice of someone who knows, I am going to attempt to slow it down, plan less far into the future when it comes to Abi (my chest hurts just to write that) and just see how I can help make her next hour brighter.

(Side note: after the keynote speech: Abigail raised almost $500 with calendar sales there at the HESS Club for NAMIWalks Greater Houston with her next hour.) 

Jen

Be You

My dad took my entire family to a really fancy dinner the week after Christmas, which naturally dictated that we (the girls) all had to shop for fancy new dresses. And shop for fancy new dresses we did. My outfit was two years in the making, having been on a serious health journey and I wore a dress unlike anything I’d worn… well, ever. #fancy #shopping

Before the night of the dinner, I googled the dress to show some friends and found two versions of the dress. Both were accurate representations of the dress I had bought so I saved them both. It wasn’t until I shared them, that I noticed the captions which showed how each dress was “advertised” to target specifically sized women, though the women pictured couldn’t have been more than 2 (maaaaaybe 3) dress sizes apart.

Then there’s me in the middle — looking just like the plus sized model. Except I’m wearing the dress in a size 10.

Now that dress is amazing. And all three of us look fantastic in whatever size it is we are wearing. I LOVED wearing that dress and cannot wait to wear it again. I want to own more sassy dresses like it. #sassydresses

But the marketing is inconsistent and quite frankly: terrible. And for some, it could be crushing.

The “normal sized” model isn’t rail thin or frail as I’ve seen before which is a nice change of pace so women aren’t being given unattainable body images. Let’s face it, while some women are naturally built that way, most aren’t and many never will be.

But the “plus size” model obviously isn’t plus sized if me pictured next to her wearing the same dress in a 10 is nearly the same size, so how are women in larger sizes to know what clothing is going to look like if they have no one modeling the clothing they want to buy?

This entire thing has caused me to develop two new soapboxes:

1. Lack of truly plus sized models
2. Marketing labels: inaccurate terms and descriptions used to define women rather than clothing (boo-hiss!)

Marketing labels are everywhere and range from positive terms like: tall, slim, and average, to cutesy terms like: hipster, boyfriend, and youth, to negative terms like: plus size, wide, and short.

If you’ve ever sighed, felt resigned or sad when shopping, it’s not all in your head: marketing advertisements are targeting and specific. But the terms and descriptions define the clothing, not you.  And as that graphic shows — the terms and descriptions aren’t even accurate!

While there’s not much I can do about the lack of plus sized models, I can encourage everyone working this “New Year New You” of 2017 to remember to BE YOU.

Above everything else, despite everything else and in the face of everything else, JUST. BE. YOU. 

Jennie

#justbeyou
#madsenmaniacs
#marketingfail
#newyearnewyou
#2017

 

 

 

 

a super healthy, intense obsession with the t-shirt contest: my mental health testimony

A huge thanks to everyone who came out in support of me, my family and the 2015 NAMI Gulf Coast Walk. The Advocacy Luncheon was a huge success!! It’s such an honor and so much fun to work with the staff and volunteers of NAMI Gulf Coast. Here is the transcript from the testimony I gave today at the luncheon as the 2015 Walk Family Chair. Enjoy.

**To join the 2015 NAMI Gulf Coast walk this year, in Texas City, on April 25th click here!!!**

For more information about NAMI Gulf Coast and its programs, please visit: NAMI Gulf Coast.

This is my family.

Now you can’t tell from looking at this, but three of my family members have bipolar disorder. We didn’t know that until 2010, shortly after the birth of our youngest daughter when my stacks of medical documentation, binders full of mood charts, and endless prescription bottles began mounting to an undeniable conclusion.

At that time, my husband, Sean, was dealing with treatment resistant depression.

Our oldest daughter, Abigail, was six years old. She had already seen ten doctors, with thirteen diagnosis and was unable to attend school due to depression.

Deklan was only four but had so far been living with panic attacks, extreme shyness and chronic crying.

All three of them received correct diagnoses of bipolar disorder between late 2010 and early 2011. In a state somewhere between overwhelmed at the enormity of such a diagnosis and yet relieved to finally know, I asked my husband’s doctor what resources were out there for me, the spouse and caregiver.

She had one suggestion: NAMI.

I began attending NAMI family support group meetings every week down in Lake Jackson immediately. Sean and I took the NAMI Partnerships Class where we were given a thorough introduction to a variety of conditions, including bipolar disorder.

But, the NAMI program that helped us the most was the walk. We attended our first NAMI Gulf Coast Walk in April of 2012 as a small team of immediate family members. We were called Madsen Mania because, by that time, the depression had lifted and all three of my family members were experiencing varying degrees of mania.

We’ve walked every year since then but, now, a few things have changed:

My husband Sean is in the steady care of a doctor he trusts, is no longer struggling with depression and has made some really good friends.

Abigail is now a 5^th grade public school honor roll student and a member of both the dance and choir clubs.

Deklan is managing his fears of dogs, heights and the dark, and has become so much more outgoing.

Now, you are probably wondering what that has to do with the NAMI Gulf Coast walk. Because, obviously, the walk wasn’t responsible for this period of recovery for Sean, Abigail and Deklan.

But it was directly responsible for the recovery of me.

The walk gave me hope.

It gave me a purpose.

It gave me a goal outside of caring for their condition at a time when my life was at the mercy of the erratic mood swings, medication schedules, doctor appointments and the basic day to day care of three very sick people… with a toddler in tow.

When I learned about the NAMI walk from the family support group meetings I also learned that every year teams design t-shirts and then the walk officials name a winner for the best one.

It didn’t take me long to develop a super healthy, intense obsession with the t-shirt content. It was, after all, the first thing I’d done for myself, for fun, for no medically relevant reason in 3 years.

We created a funny slogan and catch phrase and I printed it on so many iron on transfers I lost count. And in the two weeks before the walk, as I ironed, and ironed… and ironed, heavy handed and maybe a little bit frantic, I realized:

I didn’t just want to win, I needed to win.

I don’t know what would have happened if we hadn’t won the t-shirt contest that first year.

Probably nothing.

Because the real victory that we experienced that day, was a change in our personal approach to mental health.

We realized the walk isn’t about the distance you go, the time it takes you to “go” it, having your name drawn for the raffle or winning the t-shirt contest. (Though, full disclosure, being t-shirt champions of the world is a personal goal of mine.)

We are on a journey. And the walk is a big part of that journey. You see, my goal is to take what I have experienced, what I have learned and what I know to be true in caring for the mental health of my family and share it with those around me.

The people around me are my family, my friends, my neighbors, parents of the PTO at my kids’ schools, and, when I’m wearing my NAMI walk t-shirts, random strangers at the grocery store. They are looking for support, friendship, education, and just to be with others who understand what they’re going through. There is no better place for them to find all those things than at the NAMI Gulf Coast walk.

The walk is an amazing place and a kind of fun you can’t really describe to people, although we try, that fun is one reason why our team, Madsen Mania will be walking again this year, and it’s our fourth year together.

We are a boisterous, active group and we try every year to really take our walk experience to the next level and not just by inviting everyone we know to walk with us, though we have been known to do that, too.

We start thinking about our t-shirt design months in advance, because like I said, I have my sights set on being the t-shirt champion of the world. But more importantly because we recognize that our shirts can do more than just entertain people: they can educate them, too. So, cute logos, catchy slogans… any humor can create an opening for dialog about mental health for people who may have been too intimidated to talk about it before, or who have not personally walked through it.

Fundraising is, of course, a very important part of the walk. I know not everyone is comfortable asking for money or raising funds in any way, and we’re trying something new with that this year, too. We’ve decided to have a little fun with it and use our skills and hobbies. Abigail sold calendars featuring her photography and made a $500 donation to the walk.   Deklan is learning carpentry alongside his dad, and is in the process of building picture frames to sell in hopes of making a big donation himself. I watercolor and have three butterfly paintings that I am raffling off, in hopes of matching Abigail’s donation. Needless to say, she set the bar pretty high.

The greatest thing that we do though, I think, is extending the day’s activities past just the hours we’re at the walk.

I originally signed us up for the walk in 2012 in support of my husband. It’s a neat coincidence that his birthday lands the week before the walk. We’ve expanded our walk experience, inviting all those walking with us to join us for a birthday celebration when it’s over. Who doesn’t need cake after a 5K?

That has really allowed people, who might otherwise feel insecure or self-conscious walking at an event like this, to support our family and maybe learn a little about themselves in the process. It’s possible they are simply in it for the t-shirts…. But I like to believe that our enthusiasm for bipolar disorder and finding the positives in it is catching on.

In the past month of writing this testimony for you all, I have really struggled with how to wrap it up. And I finally realized it’s because this is not the end of our story.

Our journey is far from over, but I do hope that hearing this piece of our journey has encouraged you and given you some hope for wherever you are in yours.

Thank You.

~Jen

We are actually taking orders for a second run of the calendars so email me if you are interested in one!! They will run April 2015 to April 2016 with more information on my Facebook page.