When I was at the Congressional Briefing following the EDC Lobby Day this past Tuesday, I heard the clinical director of the Renfrew Center in Bethesda, MD speak. Mainly she spoke about how managed care has dramatically changed the treatment of eating disorders--and not for the better. One of her comments really hit home with me, when she said (approximately) the following:

Normally, you look in a cookbook for how long to bake a cake, and the recipe says to bake at 350 degrees for an hour. Managed care operates under the premises that you can make the cake at 500 degrees for 20 minutes and still have a finished cake. The irony is that often the cake looks done on the outside, but the inside is still completely raw. And if you let the cake sit for any length of time, the uncooked interior causes the whole cake to collapse.

The parallels to eating disorders are obvious: as soon as you start to "look" or outwardly seem better (i.e., the outside of the cake looks baked), the heat is turned off, the support is removed, and the whole thing collapses because it can't yet support itself. The analogy transcends issues related to managed care and really has to do with how we view eating disorders.

We need to start seeing the initial phase of weight restoration and normalization of eating behaviors similar to detox from addictions--it's a necessary first step but far far from the last. Furthermore, intensive, ongoing support is still needed after detox and weight restoration so that brain healing can take place and the person can learn how to overcome their tendency towards substance abuse or eating disorders.

Although the Renfrew director and I differ on why care needs to be continued after initial weight restoration (for her, it's the need to address the root cause of the eating disorder, which I think is mostly bollocks; for me, it's the need to allow ongoing brain healing and begin to learn and use better skills to deal with life), I do agree with her on the priority of weight restoration and the need for intensive support long after you start to look "better."

Maintaining a healthy weight is still hard for me. I have made huge strides, yes, and the higher weight has (I think) really helped to start to cement some of my recovery in my brain. (I kind of wish it didn't, but there you have it.) But I still need a LOT of therapy to help me learn to turn off that knee-jerk response of lose weight-restrict-control-control-control that my brain seems to have when faced with basically any kind of stress. My perfectionism is alive and well--perhaps because I can't bury it exactly six feet under. And the body dysmorphia? Well, let's just say that my mom's suggestion of a soak in our jetted tub to recover from Lobby Day was nice but almost laughable because I close my eyes when I shower so I can avoid seeing myself. A bath is totally out of the question.

My cake isn't fully baked yet, no matter how good the outside looks. I don't blame people for getting impatient- heck, I'm getting impatient. But the cake needs to stay in the oven and my therapy and support need to remain in place until the cake is baked.

And then I'll probably have to frost the damn thing.

When I first started blogging three and a half years ago, I didn't really foresee much of a future for my blog. It was really just me, sitting at my keyboard, needing a place to vent. I've passed several milestones along my way (100 posts, 100,000 unique site visits, 200,000 unique site visits), and it still seems totally surreal. I feared that blogging would get old- or that my readers would find my posts boring and dull. I had stopped writing in my journal a year ago because I got so bored of always writing how much I hated myself, how fat I was, how much my life sucked. I was wallowing in my own misery, and I feared, more than anything, that my blog would become filled with the same tedium that my journals would.

But it didn't.

Some of that is due to the fact that I am further along in recovery than I was and have far more interesting things to write about than How Unfair It Is and How Fat I Am. But a lot of it has to do with my readers, and my desire for my blog to be a source of information and hope rather than misery and despair. I enjoyed your presence in my life so much that I began to challenge the eating disorder. I don't see my blog as just an online journal- I see it more of as a community that is part of the larger ED recovery community. I love writing for writing's sake (I am, after all, a writer by trade), but that's not why I blog.

I blog because for the first time in my life, I feel I have something important to say. I blog because I find so much support from others and enjoy being able to give some support back. I blog because it keeps me real.

I never would have gotten to 1000 posts or any of my other milestones without my readers. You have made this blog one of the most worthwhile things I have ever done in my life.

So here's to another 1000 posts!

I was going to write an update on Lobby Day with the Eating Disorders Coalition, and thank all of you for the support that I got as I traveled to Washington, DC. I was going to write about how I had a front seat to history as the Senate version of the FREED (Federal Response to Eliminate Eating Disorders) Act was announced. I was going to write about how the sun came out on Tuesday, about how much my feet and legs hurt, about all of the wonderful people I met as I walked around Capitol Hill.

But I can't. All I can think about are those who are no longer with us because of their eating disorder. I heard their stories yesterday and I am haunted. Haunted by how damn unfair the world is. Haunted by how close I was to having my photo on a sheet of paper that was handed out at an EDC Lobby Day.

And so I am thinking of Leslie and Anna and Melissa. Of Heather and Kari. Monica. Andrea. Nicole, who died just days ago. Of those who are still with us and still struggling.

Before I think too much and lose my mind into the abyss of despair, I have to remind myself that this is why I fight and take days off work and lobby Congress and be a professional pain in the ass. I fight for me, yes, for the years lost, the damage incurred, the money spent on ineffective and useless treatment. But mostly, I fight for others who weren't as lucky as I was, for those who didn't have the health insurance and financial resources that I did, who didn't have the family support or the forward-thinking clinicians, who didn't dodge the health complications of EDs as nimbly as I did. Who faced even dumber doctors and worse prejudice and medical care that doesn't even deserve to be called medical care--all because they had an eating disorder.

That's why I go. To channel some of the rage that still simmers at my story and so many others like mine. To give a voice to those who are voiceless. To make sure that others don't get hit by the double whammy of an eating disorder and a healthcare system that too often doesn't give a damn.

I leave you with a poem by Clarissa Estes that eloquently captures my feeling on the matter:

I AM NOT NEEDED THERE … FIRE, GIVE ME FIRE!
by CP Estés

Here I have found my place.
Here, I have found my place.
Here I am needed
at this great stone wheel
that cannot turn by itself,
but only by the bones and blood
of the hands and the legs
that can hold to it,

that can hold to it,

that can hold to it.

Working long, tiring, resting,
Working long, tiring, resting,
Working long, tiring, resting,
coming back
once more.

One of my coworkers at the bakery (who shall remain unnamed, for her dignity and my own) told me that for Easter, I should just enjoy my visit with my friend, relax, and "let my titties hang out."

After I got done laughing--I'm creative, but never in a million years could I have come up with that one!--I told her that, indeed, I was looking forward to doing just that. What's really struck me is just how much I've been doing that in the past few months. No, I still wear a bra (well, most of the time), but I've been trying to "let things hang out," so to speak, on more of an emotional level. Expressing emotion has never been a skill of mine. I can handle anxiety and, to a lesser extent, frustration, but anything deeper just gets blocked between my brain and my mouth. It's why I can't act- I can experience the emotion, I can have empathy, I can even read what other people are feeling, but I can't parrot it back. I just...shut down. For most of my life, it never even occurred to me to share my feelings. True, I had some spectacular meltdowns, but some of those were as much due to the fact that I didn't know how to put my intense feelings into words as they were an expression of emotion in their own right.

Even years before the eating disorder, it never occurred to me to ask for support. I was always happy for someone to lend an ear to hear me piss and moan, but I never said anything like "I need you to..." whatever. I was happy to play psychotherapist to my friends, and listen and reflect back and provide advice and opinions, but I never sought them out for the same purpose. Some of the thinking was that I didn't want to be a burden- if they were having problems, then the last thing they needed was someone unloading onto their shoulders. But much of the reason I didn't share had to do with the fact that I tend to just shut down emotionally under stress.

I'm a private person (despite the rather public blog), and to some extent, sharing to the Whole Wide World isn't super appealing. And yet I've come to realize over the years that my readers are so supportive and understanding, that I owe it to you to at least take the risk and start sharing more. Some of it has been focusing on more personal and emotional issues rather than focusing on the science-y parts. Other parts have been sharing on Twitter (click here to read/ignore my updates) when I'm having major bad body image, when I'm feeling urges to restrict or otherwise act contrary to recovery. I've been trying to share more with TNT--I know! Sharing your feelings with a therapist! Who'd have thunk?!?--and even my parents and close real-life friends. It's a skill for me, and the more I practice, the better I get at it.

The irony is that I'm getting lots of support by letting it all hang out. Too bad bras don't work that way...

Biological link between stress, anxiety, and depression identified

Reduce Anxiety by Acting Opposite to How You’re Feeling

"Really, Jillian?" An exploration of Jillian Michaels' controversial comment in the new issue of Women's Health magazine

Is That Fat Girl Me? Research raises provocative questions about why women hate their bodies more than men.

A Mother's Loss, a Daughter's Story

Australia reports high incidence of eating disorders in males

Guided self-help a cost effective option to treat binge eating, researchers say

Fatorexia: the newest eating disorder?

Personality disorders as risk factors for eating disorders

Who'd have thought?

How teen girls experience their eating disorders

The many meanings of "I don't know"

An introduction to eating disorders: clinical presentation, epidemiology, and prognosis

A webinar on eating disorder recovery that was co-produced by the National Eating Disorders Association and the PBS program This Emotional Life is now online and available for viewing. The whole webinar is one hour long, but it's an interesting discussion and worth watching/listening to.

Recovery from an Eating Disorder: What Does Real Recovery Look Like? from NEDA on Vimeo.

Although I'm currently having major body dysmorphia as I try to adjust to my new weight, one of the benefits of staying at this weight is that my metabolism has evened out. Hot flashes are a thing of the past. I'm not so raveneously hungry all the stinking time. I'm not quite as obsessed with food. And my body is no longer so exquisitely sensitive to my caloric intake that a minor (i.e., ~50 calorie) drop in intake will leave me almost unable to function.

However, starting the job at the bakery has dramatically altered my energy requirements. The first two weeks, pretty much nothing changed in terms of what my body needed to maintain my weight. This rather startled me, as I was preparing myself to need to eat more with being on my feet for so much of the day. But within the past week, I think my body has started to notice that I'm more active (even with cutting back on exercise a little bit!) and so the metabolism freak-out has returned.

Random hypoglycemia? I didn't miss you.

The strange thing is that my first clue wasn't so much increased hunger but increased insomnia. I wasn't specifically hungry, but my body was keyed up and restless. Considering the fact that I was drop-dead tired, I first thought it strange that I was having trouble sleeping. Maybe it was caffeine--after therapy, my mom and I went to dinner, and I had two glasses of Diet Dr Pepper. This may have played a role, but in reality, my body was telling me that I wasn't eating enough.

One of the useful aspects of this change is that I first noticed the shift not through increased hunger, but through difficulties sleeping. The hunger did follow, yes, but I now know that I need to watch my sleep patterns closely. It's a very useful piece of information, and I've gotten much better at recognizing that when I randomly can't sleep, my first line of action should be to grab a few spoonfuls of peanut butter. I hope to get better at anticipating these hunger signs so that I'll know when I need that peanut butter before I even crawl into bed.

For the most part, I've rolled with it. Yes, I'm irritated that I have to eat more and I'm thinking so much more about food. I'm irritated about the hypoglycemia and the sudden, ravenous hunger that makes me want to gnaw on my co-workers. I'm (what the hell, I'll admit it) a little disappointed that my body responded by increasing my metabolism rather than decreasing my thighs. But there's not much use in fighting it, either. I'm trying to accept that my body needs more fuel--okay, that it needs fuel period--even if I'm not thrilled at the idea of eating more.

But I'm proud of how I've responded to this. I didn't freak out, I didn't require some over-the-phone hand holding from my dietician, I didn't need my mom to tell me to eat more, I just...did it. There was some anxiety, yes, but not a whole lot. The anxiety was as much about a change in eating habits than the actual increased food. And I'm not completely gibbering in fear that I will surely have gained weight. I fully expect my weight to be about the same as it always is. I have confidence that I'm not eating for emotional reasons and that I'm responding--confidently!--to my body's needs.

That's pretty cool. :)

The past two days (Sunday and Monday), I've worked an earlier shift than usual, such that I'm coming home from the bakery when it's still light out. Other than my initial interview, this was probably the first time I haven't driven home in the pitch black. Although my new town is getting distinctly less new--I can take a wrong turn and sort myself out without having to use the GPS on my phone--I don't have every little facet memorized like I did in my hometown in Michigan. The route is familiar, and I don't have to think very hard about where I'm going and when to turn.

But when I was driving home on Sunday, I started to feel lost. I approached one of my normal turns, and for a split second, I couldn't remember if I was turning the right road or not. It looked so different. There was grass and a wildflower or two. I could see a few signs in the distance. Clearly, this wasn't the right place to turn.

Then I realized: I was so used to seeing the intersection in the dark that I barely recognized it in the daytime.

The more I thought about this split second confusion-turned-realization, the more I realized just how much it seemed to encompass recovery for me. I have been so used to living my life in the dark--i.e., with the eating disorder--that I don't recognize my life now that it's brighter out. Often, I take a look around me and have this brief moment of panic, thinking Wait, this isn't me, this isn't my life, what the HELL is going on?!? Much of my life isn't all that different from during the eating disorder- I go to work, I chat with friends, I write, I feed the cat. But it's a totally different experience doing these tasks without the haze of starvation and depression hanging over me. Everything seems so unfamiliar because I'm used to the darkness.

I have to remember that the strangeness will pass, and soon I will get used to the light.

What's interesting is that I never had that whoa... moment when I first drove home from work in the dark. I knew where I was. I knew where I was headed. I've driven in the dark many times before, and so I never gave it much thought. And so went the eating disorder. Maybe the darkness descended so slowly that I adapted and didn't notice the change. Or maybe the darkness seemed somehow natural and I never did that double-take that I did when I started driving home during the daytime.

I don't mind driving at night, but I much prefer driving during the day. Aside from the safety issues, I enjoy being able to enjoy the scenery (what little there is around here). Regardless of when I'm driving, I always like to have the windows down and the volume up. Life without an eating disorder is much more interesting- I can see and experience so much more, even if the scenery isn't all that great.

It's not that the drive home--or even my life itself--changed for me. It's my ability to see and recognize what's going on that has changed. And this shift in perception has made more of a difference than I ever thought possible.

Yep, you guessed it: we survived until Sunday and we get the treat of another smorgasbord (wait- should I be rewarding my readers with brain candy? Will this give them eating disorders?)

Are public health students guilty of "fatism"?

Testing the quality of information of eating disorder blogs

Female Body Dissatisfaction in 26 Countries Across 10 World Regions

Binge Eating, Bulimia, and Reward Sensitivity

Nonfat phobic anorexia nervosa: Clinical characteristics and response to inpatient treatment

Eating disorder treatment facility drawing fire for refusing to take down triggering commercial

Are Diagnostic Criteria for Eating Disorders Markers of Medical Severity? Article from the journal Pediatrics that spawned some of the following stories:
Eating disorder label leaves many untreated (San Francisco Chronicle)
Eating Disorder Diagnoses May Be Too Narrow (Time Magazine)
Anorexia, bulimia definitions hinder treatment, study says (CNN)
Eating disorder cutoffs miss some of sickest patients (ScienceBlog)
Eating disorders need inclusive insurance coverage (Tufts Daily)

Weighing the Evidence on Exercise

Google and Facebook raise new issues for therapists and their clients

Sensitivity to reward and punishment in eating disorders

Body Shape Linked To Kid's Popularity

The impact of weight normalization on quality of recovery in anorexia nervosa

Disordered Eating and Eating Disorder: What's the Difference?

Why Athletes Are Geniuses

Body Image Concerns Hardwired Into Women's Brains (thanks, Michelle!)
And Laura Collins' response to the news coverage: Crossing the Line

In a recent post on her Psychology Today blog, The Dance of Connection, Harriet Lerner wrote about how to live a courageous life. Most of her advice was amazingly simple things like speaking your mind and being a friend.

I get frustrated sometimes that my life seems so ho-hum boring, or that I have it too easy. Other times, I get upset that no one can see how hard even the simplest of things can be- deciding what to eat for breakfast, or getting through the day without having a massive meltdown. Although some of this is a matter of learning how to give myself some credit, some of this needs to be redefining courage. My friend from grad school called working on her novel "an amazing act of courage." This isn't the kind of throw-yourself-in-front-of-a-speeding-bus courageous, the acts that take a split second and yes, were very brave, but they also didn't have a lot of contemplation involved. That isn't to say that these acts are less courageous, but that it's a different kind of courage than is required to overcome an eating disorder.

When I started recovery from this last relapse about a year ago, all I could see was an endless line of meals and snacks and Ensure in front of me, stretching for the rest of my life. I was filled with terror and dread. Yet with enough support and encouragement, I was able to start eating and facing down my fears. Almost 2000 eating events later, I'm finding meals take less courage but still require some proverbial girding of the loins. I eat even when every fiber of my being would really rather not, when I feel like a bloated Heffalump, and on days when I can't imagine why I'm bothering to try and get better anyway. However mundane it may be, it's still courage.

I think of my aunt raising her autistic grandson. I think of all my friends rebuilding their lives after an eating disorder. I think of my best friend Libby as she fights various medical issues. Courage. It describes them, and it describes me.

Lerner describes some seemingly basic ways to live more courageously. Be sure to add yours in the comments section!

The courage to love and to create.

The courage to know another person and be known.

The courage to see yourself clearly.

The courage to bring more of your authentic self into a relationship.

The courage to be generous and patient.

The courage to have an open mind.

The courage to have an open heart.

The courage to live your own life (not someone else's) as well as possible.

The courage to honor a commitment.

The courage to endure when something terrible happens to you or a family member.

The courage of heroism in the usual sense, that is the willingness to sacrifice everything because you believe so strongly in something.

The courage to get through the day.

I think everyone has little things they do to motivate themselves in recovery. For me, I like to look at travel websites and plan hypothetical trips (Galapagos Islands, anyone?). I also like looking at crafty websites (for when I have more money because it's not going to The Therapy Fund). My newest recovery "game" has been looking at condos and townhomes in my new area. It began as a way to keep myself amused and procrastinate on writing projects. I was curious to see what was out there, and I started looking.

What was different was that I kept looking.

My two favorite "go-to" sites are Trulia and Realtor. Yes, these are places for some serious granite countertop envy, but I'm also realistic enough to know that I can't afford most place with granite. I want a place that has 2 bedrooms (so I can set up an office and guest room), and at least 1.5 baths, and although I like the idea of a yard, my shifts at the bakery leave me far too tired to even comprehend yardwork. So condo/townhouse it is.

I've only ever rented, and so moving into my own place is a pretty big step. I've bailed on more apartments than I care to recount--upwards of four different places--due to the eating disorder, and I'm not keen on those freneting stuffing of crap into boxes while being so weak I can barely stand. Between moving out of my DC area apartment and back to Michigan last June, and then moving from Michigan to Virginia last December, I'm damn tired of moving. And I can't bail on a condo the way I can an apartment.

Before, I might have foolishly gone ahead with getting my own place with the idea that a mortgage would "encourage" me to only dabble in the eating disorder a little bit. I was still living under the delusion that I could control the anorexia, and that I could both live the life I wanted and stay anorexic. It took almost a decade to rid myself of that little delusion. Certainly, having this responsibility will be a motivator for recovery, but I'm not going to go depending on it. My recovery needs to stand on its own two feet (supported by two rather massive thighs). If a mortgage helps, all the better.

I'm still many, many steps away from getting a place of my own. For one, I have to step up to the plate and get better at feeding myself. For another, I have to try and figure out how to get a mortgage. I have a modest down payment saved up (part of it was money my grandparents left me), so that's not the problem. The problem is that at least half of my income is from freelance writing, and banks aren't very keen on loaning money to self-employed people. One saving grace is my bakery job- it's full time with benefits, so although the pay otherwise sucks, it provides a level of stability that will make me a more appealing candidate. I'm starting to get my questions about mortgages together so that I can make an appointment with the lady at the bank in the next few weeks and start getting my finances in order. Outside of recovery stuff, that's the first step.

Then there comes the process of looking for and finding a place. I know I need to be ready to make the leap when I first start looking because a) I've watched enough HGTV and b) that's just how my life works. My parents' real estate agent will hopefully work with me, and she's awesome, though I do have to formally ask.

I keep coming back to this question: am I ready for this next step? Of course, you never know until the rubber hits the road, but I want to have a decent idea of what I'm getting into. The obvious place to start is taking more responsibility for my eating, rather than passing it (and the accompanying anxiety) to my mom. I need to know I will be able to maintain a strong enough recovery that I won't go screwing up this aspect of my life the way I've botched everything else in these past 10 years. I don't want to have to go to another boss and say, "Um, I don't know if you've noticed, but I've, um, kinda, um, lost a lot of weight lately." And I can expect a bank would be even less understanding than some of my nightmare scenarios. My patented Puppy Dog Eyes may work wonders with Pam from the apartment complex, but I doubt Fannie and Freddie will be so easily swayed. I need to know I'm ready, no doubts, no questions, no hesitation.

So looking at houses has been an interesting motivation for me to keep moving forward in recovery. I want to pick out paint colors. I want to think about decorating beyond posters and tape. I want my own place, where I can get some much-prized alone time. I want to be a grown-up. And I know that to do all these things, I can't have anorexia following me around. When I am actively in my eating disorder, none of these things matter, and I eventually lose all capacity to do them anyway. I want a future without my eating disorder. I want to be "Carrie the Writer" and "Carrie the Home Owner" and (heaven help me!) "Carrie the Bakery Chick." Not "Carrie the Once and Future Anorexic." A house isn't going to magically make my eating disorder go away, and I know my struggles are far from over. All of this is true. But the fact that I'm starting to seriously contemplate this next step and leaving my eating disorder further behind.

I'm going to indulge my geeky side here briefly, as I stumbled across a research article about the use of exposure and response prevention for anorexia.

The International OCD Foundation describes exposure and response prevention as:

The "Exposure" in ERP refers to confronting the thoughts, images, objects and situations that make a person with OCD anxious.

The "Response Prevention" in ERP refers to making a choice not to do a compulsive behavior after coming into contact with the things that make a person with OCD anxious.

This strategy may not sound right to most people. Those with OCD have probably confronted their obsessions many times and tried to stop themselves from doing their compulsive behavior, only to see their anxiety skyrocket. With ERP, a person has to make the commitment to not give in and do the compulsive behavior until they notice a drop in their anxiety. In fact, it is best if the person stays committed to not doing the compulsive behavior at all. The natural drop in anxiety that happens when you stay "exposed" and "prevent" the "response" is called habituation.

It's primarily used to treat people with OCD, but since there is an overlap in many of the symptoms of OCD and eating disorders--"The overlap between AN and anxiety disorders suggest a model of AN in which baseline anxiety features yield eating related fears, avoidance behaviors, and ritualized safety behaviors that promote the underweight state and the perpetuation of the disorder."--the authors thought that ERP, as it's commonly known (because if the psychotherapy community loves one thing more than couches, it's acronyms), might be helpful in relapse prevention. Their guess was right.

This blog post isn't about the study- I'm trying to stay committed to my pledge not to intellectualize my illness. But as I was in the bakery today, I was thinking about this study. Why? For one, I had lots to do and very few customers, which meant my mind was free to wander about. For another, I got offered a sample today, this time by the cheese people. I was offered a piece of queso manchego, and I took a teensy little piece. I didn't know if I would like it, and also that whole eating disorder thing I've been telling you about. The cheese lady asked me what I thought, and I nodded and said "Pretty good." And the cheese was. So the cheese lady said, "Here, have a bigger piece." I just about flipped the shit on that one--two pieces of cheese in one day?!?--but I also knew that my recovery depended on saying yes and so I did say yes and had the second piece of cheese.

Which is just about when I started freaking out. I had every imaginable thought running through my head, ranging from "Everyone is going to think I'm a PIG!" to worries about massive weight gain from a small piece of cheese. This is why I avoid samples, I thought, because it's so freaking stressful.

Once I calmed down a bit, I was able to talk myself off the ledge of oh-shit-I-ate-too-much and I got a wry chuckle out of how much exposure to my ED fears this job is giving me. And cue thoughts of the study I cited above.

Although I don't think an eating disorder is "about" control, I certainly would say that it's a major theme in many people's eating disorders, including mine. I did some exposure work with fear foods in the past, but that exposure was always on my terms. I made sure I was never in a situation in which I couldn't get out of eating. More than that, I did my damnedest to make sure that I wouldn't be in a situation in which I'd be offered food without my being aware of it (I fully expected to be offered hors d'ouerves at a cocktail party, or even a meeting over coffee, so I could "plan" or restrict accordingly if I couldn't get out of it). Even in the bakery, I still have control. No one is making me try things. I won't get sacked because I don't/won't/can't sample the eclairs or the cannoli. I could make up a dairy allergy, a wheat allergy, a calorie allergy to look less like a freak.* But I know that recovery means learning to live with offers of food without my fight or flight response kicking in.

So I said yes to the second (fairly sizable) slice of cheese.

Before you go patting me on the back too much, know that I had packed a string cheese with my dinner, and I substituted the queso manchego for the string cheese. If I didn't have an item that was quite so equivalent, I probably would have backed out. But I accepted the cheese and ate it and found that it was actually quite good- a lot like Parmesan but less crumbly and pungent. I didn't plan on having the cheese, I didn't know the exact calorie count, and I accepted a sample at the bakery--all of which are anxiety provoking things for me.

In ERP, the therapist usually asks you to create a hierarchy of anxiety-provoking tasks for you to accomplish, starting from the least anxiety-provoking to the most. And then you systematically begin exposing yourself to the items at the bottom of the heirarchy, and work your way to the top. Today's cheese incident was probably fairly low on the heirarchy- maybe not the lowest, but definitely not at the top.

And I ate the cheese. And I survived. I didn't restrict, I didn't purge. I am exhausted and frustrated (dude--it's cheese!), and I hate to think that this ERP party is just getting started, but I suppose it is what it is.

*"I'm allergic to food."
"So what do you eat, then?"
"Diet Coke, black coffee, and mustard."
*headdesk*
Don't think I haven't seriously debated using this line! LOL

I found a post on Therese Borchard's blog Beyond Blue that really resonated with me. In her post, Therese discussed how Shania Twain pulled herself out of a "deep, dark slump" after her marriage collapsed. Therese, who has suffered from depression for years, had this to say:

I remember feeling that way as I came out of my most severe depression in early 2006, and I'm experiencing shades of it today as I wrestle with my brain to move toward recovery, away from the Black Hole of sadness.

Like Shania, I have had to do what's counterintuitive: say yes to every invitation I get, literally forcing myself back into the world. She's right in that, as you're climbing to the surface of the Black Hole, you want nothing more than to isolate and disappear. But there is great healing in connecting with friends and neighbors, fellow moms and family.

The other thing I do when I'm crawling back to life is to repeat this mantra to myself as many times as I need to: "I will get better." My great aunt, Gigi, who also experienced a nervous breakdown at the age of 35, told me to keep on repeating that until I began to believe it.

It is some great advice for those of us who are struggling with an eating disorder, too. It would seem pretty obvious, wouldn't it: you've been starving yourself so start eating again. Not that this isn't an important aspect of recovery, it's just that it's not very intuitive when you have an eating disorder. My natural impulse was to keep restricting and exercising, keep hiding away from the world, keep avoiding, keep an iron grip on exactly what I would do and say.

It is, of course, worth remembering that my natural impulses were what got me into this mess, anyway. So it's really not all that surprising that I would have to (temporarily) ignore my natural impulses in recovery.

At my new job in the bakery, I actually eat lunch on my lunch break. I can't fully explain how odd this feels to me. Lunch was an opportunity to exercise, or work, or at least refill my coffee mug and take a dumb online quiz or two. Now, I pull my lunchbox out of the fridge, sit down, and eat. It still feels odd and wrong.

Or being honest with TNT about my struggles. I have to force myself to go over the gory details about what went on each week. Usually, I have glossed over the difficulties because I didn't want my team to know I was struggling. This wasn't just a protect-the-ED habit; it was a deep, abiding fear of appearing imperfect and out-of-control. Now, I'm trying to bring up the difficulties and not just as I'm walking out the door.

When I see an ice cream place and it's time for my snack (and I feel like ice cream, which is, like, always), I make myself say "Ooooh- let's stop." I force myself to have days where I don't eat every last one of my five fruits and veggies and instead have some Pop-Tarts. I force myself to say yes. I force myself to voice my opinion, to risk looking like a dumbass, to hold my breath and leap.

These things still feel unnatural. Many of them weren't natural even before the eating disorder (asking for help, voicing my opinion, leaping), and I've been sick for so long that the ED feels natural. It's my gut instinct, not just in terms of food and weight, but also in terms of living my life. The idea is to develop a new and improved (!) gut instinct, one that works in my favor rather than driving me into the depths of despair.

For now, this instinct will remain raw though not unused. It's just not instinct yet. And in the meantime, I am trying to take Borchard's advise and tell myself "I WILL get better. I WILL get better. I will. I will."

Well, kind of. The blog Noshtopia posted an interesting question the other day: Does Your Relationship With Food Reflect Your Relationship With Yourself? As I read through Stephanie's blog post, I realized that my eating disorder was focused on the food, yes, but it reverberated throughout my life.

Right now, at where I am in my recovery, I would say that I'm anxious and cautious around food. I hesitate. I hold back. I worry the food might somehow "hurt" me. I don't trust food or myself around it. I still want to not need food--although I am able to follow through on my meal plan even when unsupervised. At the bakery, people have started to learn that I typically turn down samples. The little nibbles that others take for granted, well, I don't. I'm still afraid, still nervous, still have that freaky, hyper need for control. Food overwhelms me. And the more I think about it, the more I realize that this really does reflect how I feel about myself and my life. I am very hesitant and anxious about many things, not just food. In conversations and interactions with others, I hold back. I worry how something might hurt me. I don't trust others very easily, and I definitely don't trust myself (hence the uber-rigid following of the meal plan). I feel, ultimately, rather needy.

At the height of my eating disorder, I hated food, I hated life, and I hated myself. I was terrified of everything. I withdrew from everyone and just totally shut down. I stopped eating. I stopped living.

It's hard to really separate the two, those two things we refer to as eating and living. Obviously, life involves quite a bit more than eating. But how we eat says a lot about how we live: what we value, how we like to spend our time. Your food doesn't define you- a steady diet of Taco Bell doesn't make you a bad person. Enjoying and relishing this steady diet of Taco Bell is different that being afraid to eat at any place besides Taco Bell.

When I think of myself in more meta terms, I use adjectives like quirky, curious, funny, shy. Before the eating disorder arrived, you could see these (in some sense) in how I approached food. In high school, a friend suggested we try a Thai restaurant for lunch. Thai was pretty exotic for my small-ish suburban town, but I was curious and agreed. I kept my order very tame, but I enjoyed trying new cuisine. And really, that was me. I need a lot of encouragement to try new things and to put myself out there, but I'm also rather curious. Many times, some of my best ideas have stemmed from the thought, "I wonder what would happen if..." Okay, some of my worst ideas have also stemmed from that thought, but still. I dragged my parents to a Vietnamese place in my new town after reading a restaurant review. Without the review, I probably never would have gone. But we went and had fun. I didn't try anything exotic, but I liked my selection and what more could you ask for.

So these "meta" terms for myself are also now ways in which I want to approach fixing my style of eating. For me, balancing my natural curiosity with my similarly natural tendency to prefer the familiar is probably going to take the most work. I easily fall into eating ruts, just as my life easily falls into ruts and habits. I like tooling around in the kitchen and throwing stuff in a pan and seeing what happens. I prefer to work with a recipe, but I can improvise as needed.

As goes the food, as goes my life.

How does your relationship with food reflect your relationship with yourself and your life?

It's Sunday again, which means it's time for this week's smorgasbord. I have a variety of links to share with you- I hope you enjoy it. If you have anything you think would make a good addition to a smorgasbord, drop me a line at carrie@edbites.com. I will, of course, credit you with your suggestion.

Agreeable restlessness in Anorexia Nervosa

Young Girls at Risk for Depression May Shut Down

Compulsive overeating as an addiction disorder

A haiku on true beauty

Looking ahead to wellness incentives

The emerging science of molecular gastronomy

ED treatment center finds following on Twitter

"Weighty Matters" roundtable summary

Higher fat at breakfast may be healthier than you think

The psychological immune system

Mental health providers should prescribe exercise more often for depression, anxiety

Attitude is an important part of a healthy lifestyle

ED cutoffs may miss some of the sickest patients

I blogged about the changes to the DSM-V criteria for eating disorders here and here when they were announced in February. I posted the original draft criteria in my blog the day they were announced, so you can refer to them for the changes. And there were two- two MAJOR changes that has me rather excited. I submitted my blog posts to the APA website per their request for comments, and let's just say that our voices have made a difference.

First major change

The "85%" weight criteria for anorexia has been dropped. It has been replaced with the word "markedly" and the new criteria reads as follows:

Restriction of energy intake relative to requirements leading to a markedly low body weight. Markedly low weight is defined as a weight that is less than minimally normal, or, for children and adolescents, less than that minimally expected for age and height.

Which is good, because a low body weight for one person may be normal for another, and the 85% criteria assumes that there is one "ideal" body weight for all 6.5 billion of us.

Second major change

The Eating Disorder Workgroup has changed the definition of "purging" in bulimia nervosa to include fasting, excessive exercise, and abuse of medications. They eliminated the difference in DSM-IV between purging/non-purging bulimia nervosa and just lumped them all in together. The new explanation of purging for BN reads as follows:

Recurrent inappropriate compensatory behavior in order to prevent weight gain, such as self-induced vomiting; misuse of laxatives, diuretics, or other medications, fasting; or excessive exercise.

You can still comment on the altered criteria until April 20.

I stumbled across this story in the UK's Daily Mail ("Emily's mother told her she wasn't welcome at home while she was anorexic") and it really got me thinking. The gist of the article was that Emily's mother said that her anorexia was no longer welcome in her mother's new home. Emily's mother said she had exhausted other options and didn't know what else to do. Most of the commentary I've read about the article usually involves shrill accusations that her mother is a creep, no wonder Emily had anorexia, and so on. That's not really what I'm interested in. What really resonated with me was Emily's response to her mother's ultimatum:

But with her mother's words ringing in her ears and her friends frantic with worry over her emaciated body, in July 2008 she decided to attend an eating disorders clinic as an out-patient.

'I couldn't bear how life was any more,' says Emily. 'I felt there were no other options left.'

And it was that last line, "I felt there were no other options left," that hit home. For me to take the first tentative steps towards recovery, I needed to know that there were no other options for me. I knew that no one on my treatment team or any of my family and friends would support my eating disorder. Just as importantly (or perhaps more so at the time) was that I had exhausted all of my other options. I had done the route of hospital/residential/partial and round and round for years. I had tried ignoring the eating disorder. I had tried various forms of outpatient therapy, support groups, group therapy, online support, you name it. I had tried embracing the eating disorder and trying to make the best of it. In the end, the realization that slammed me and allowed me to start tentatively giving up the eating disorder was realizing that I couldn't have both the life I wanted and the anorexia. I knew anorexia, and the anorexia sucked. That wasn't what I wanted for me.

Last June, my options were limited: keep going with the anorexia and die, or go home and try to get better.

My old therapist is fond of the phrase "choice amongst lack of alternatives." In the early days of refeeding, it meant I got to choose between orange or apple juice at breakfast. If I didn't or couldn't pick, then my mom would pick for me. But there was no getting out of the juice. So I started to make some choices. My recovery was, in a sense, the same way: a choice amongst lack of alternatives. What else was there for me? I had exhausted all my other options and there was nothing left for me to do but get better.

This wasn't a lightbulb moment or an epiphany. In fact, I didn't even realize it for quite some time. Mostly, I felt discouraged and demoralized that I had failed at both life and anorexia. Yet it was the lack of other options that enabled me to start standing up to the eating disorder and begin the process of eating and gaining weight. The idea was so overwhelming and frightening that it literally needed to be the only option for me.

The irony is that this very lack of choice ultimately opened up so many choices for me. I now get to decide what I want to write about, I can pick out what I want to eat, I can conceive of a life that doesn't involve juggling an eating disorder along with everything else.

This year's National Eating Disorders Association in New York will be my fourth- it's turned into an annual mommy-daughter trip, combined with a weekend of learning and a big ED family reunion. So yeah, it's one of the highlights of my year. It's nice to have a weekend where I don't feel I have to hide my eating disorder, nor is that what really defines me. I am known for my advocacy work and NOT for my eating disorder, because at NEDA, having an eating disorder isn't exactly novel.

But this year, I have something even more exciting to look forward to. After many years of submitting proposals and being rejected, I finally finally get to present this year with my former therapist Stephanie Milstein* on utilizing family and friends in relapse prevention. I was also super excited to learn that Harriet Brown will be presenting with Walt Kaye this year, too.

The NEDA Conference webpage can be found here. I will add updates as soon as the program information becomes available. Registration generally opens in May/June. I would love to plan a meet and greet with others who are going, whether it's a brief "hi, how are you?" or something more lengthy.

*It's an awful picture that's all stretched and pixel-y, and I can vouch that her hair looks much better in person! LOL

I was about to post a comment on Laura Collins' recent blog "Another word bites the dust" when I realized that the comment was long enough to be its own post. So here goes.

Laura's post was about the use of recovery/remission when talking about eating disorders. I know that in my (lengthy) treatment experience, I am much more familiar with the word "recovery," and have more or less adopted that into my lexicon. The problem is that there is no solid definition of recovery from an ED- most research studies measure "recovery" as no longer meeting the diagnostic criteria for anorexia or bulimia. Which, as anyone with an ED can tell you, is ludicrous almost to the point of hilarious. Because we all know anorexia is "over" once you hit 86% of ideal body weight, and you no longer have any problem with bulimia as long as you binge and purge less than twice a week. Riiiiiiight.

The idea of eating disorder recovery is from the addiction field, and there certainly are no shortage of parallels between eating disorders and addictions. Is an eating disorder the same as an addiction? I'm not prepared to make that statement, but nonetheless there are many similarities. Laura writes on the "recovery model":

This use of the word means re-framing the goals for the treatment process. The recovery model asks the patient what they want, what the illness means to them, and sets goals based on those goals and values. Since this idea comes out of the addictions and schizophrenia world I understand the shift away from pathologizing and insisting on "cure" in that context but absolutely reject it with eating disorders.

Not surprisingly, I agree with Laura. To some extent, the recovery model has a point: there is no cure for eating disorders. For that matter, we can't cure the common cold or the flu, either, let alone cancer, AIDS, and even athlete's foot. But we can treat these illnesses, even without a "cure". The difference is that with most illnesses, the sufferer wants treatment and seeks it out; with eating disorders, that's not always the case. Cancer is no longer a death sentence or necessarily a lifelong condition. We treat it and then we watch and wait and monitor. A person can life a fulfilling life that is totally and utterly cancer-free, and yet they still need regular monitoring.

Eating disorders are similar. I'm not saying that "monitoring" needs to be regular therapy or doctor's visits or monitored meals. But ongoing recovery can't be neglected. Jenni Schaefer says she is "recover-ED" and I have no reason to doubt her. Yet as much as she has put her eating disorder behind her, she also doesn't tempt fate by dieting, being unmindful of her eating, or otherwise not taking care of herself.

In a nutshell, my views on recovery/remission from an eating disorder is this: the goal is to put your eating disorder in the past tense, but always keep your recovery in the present tense.

One day, I want to say "I had an eating disorder," or "I used to be so obsessed with food." It happened, my illness was treated, and now my life is continuing, unencumbered by anorexia. But my recovery must stay in the present tense. I can't get lazy about not waking up early enough to eat a proper breakfast. I can't neglect my sleep. I can't think about losing a few pounds and believing it will end well. I can't forget that I once had an eating disorder. This doesn't mean that I will be haunted by my disorder and spend every waking moment fighting my way through the ED bullshit.

So I don't think of Life Without ED as recovery or remission, really. I think about it as verb tenses. The illness: past tense. My life: present tense.

When, in the course of eating disorder recovery, it becomes necessary to purchase a whole new wardrobe because you've outgrown everything you own, bring patience, a bottle of water, a snack, a credit card with a high limit, and a support person because it's going to take a while.

With the weather hitting the 90s today, I tried on some of my shorts from last summer (that had fit me pre-relapse) and realized that basically nothing fit. My treatment team had increased my target weight slightly since I tend to lose weight very quickly, which I was aware of. But I also overshot my new target by about 10 pounds. I flipped out when I realized that I weighed that much but after a LOT of CBT from TNT (how's that for acronym hell?), I've started to accept it. I don't like it, and I do want to restrict and lose the weight, but I also realized that weight loss is how I got into this mess in the first place. I don't have to like my weight and appearance--and believe me, I certainly don't!--but I have started the long, slow road to accepting them.

Body acceptance, however minimal, still didn't leave me with much of anything to wear. So off to the store I went, accompanied by my mom and my Blackberry. I think I tried on every pair of shorts that Kohl's had. No joke. And nothing seemed to fit right. I have the Arnold Family Thighs, which can make clothes shopping...interesting...at even the best of times. But today seemed to bring out the world's most oddly designed shorts I have ever seen. The legs would be tight, but the waist was so huge that I just pulled the damn things off without unbuttoning them. I don't have that freakish of a shape!

But I did find three pairs of shorts and two pairs of capris, so I should be all set. The irony is that I found a bathing suit with the least amount of melodrama. It's a black and white tankini- I have a long torso and always end up with a wedgie from one-piece suits and I can't even imagine getting in a bikini. And the bottoms have a little short wrap skirt over them, which helps cover a) my ass and b) my scars from cutting. I hate wearing a bathing suit for all of the usual ED reasons, and I also hate wearing one because I'm extremely self-conscious of my cutting scars. I feel like my thighs are freaky obvious not just because they're the source of local seismic activity, but also because they're covered in scars. But the tankini bottoms covers the worst of them up, so that makes me happy.

I hated this experience. I hated that my ED sucked half my first paycheck. I hated trying everything on. I hated having to try bigger sizes than I'm used to. I've never really been fond of shopping, and having to shop for new clothes and feel like a fat failure, well, that just sucked. I'm trying to use the experience for good instead of evil. I'm trying to tell myself that if I stick with recovery, I no longer have to empty my bank account for new clothes once a season and then clothe every skinny kid who shops at thrift stores with the cast-offs. I won't have to approach clothes with trepidation because I no longer know if/how something will fit. Getting dressed may one day cease to be a drama worthy of a Lifetime TV movie.

Don't get me wrong- I still think I look fat and hideous. I still avoid looking at myself in mirrors. That hasn't changed. But I'm starting to reframe the problem: it's not my size/weight, it's my hatred of my current size/weight. It's my inability to let go of whatever it was the AN gave me. My problem isn't that I'm a fat fat fattywad (or I think that I'm a fat fat fattywad), it's that I let this define me.

I don't want to give away all of my old shorts and cute t-shirts. I have sentimental attachments to some of them (souvenirs from Irish festivals, college giveaways, etc.), but maybe I'll make a quilt out of the t-shirts and hope that the girls in my town enjoy their new wardrobe. I am NOT doing this again. It's uncomfortable and expensive. So I'm saving my receipts as a motivator for recovery.

And after all the shopping is said and done (though before the credit card bills come due), I'm actually feeling okay. It was a necessary step, and I took it. There's not anything more I can ask of myself.

This is your Happy Easter smorgasbord, full of ED-related (and not-so-related) tidbits, information, and yes, Marshmallow Peeps.

It was bound to happen sooner or later: a customer in the bakery who was absurd and fanatical about the calorie and fat content of her desserts. First she asked for the lowest calorie item we had, and I tried to stall and say "Hmmm...I don't know..." Which I didn't, and I also wanted to stay as far away from this conversation as I could. She narrowed it down a bit and asked if we had anything sugar-free. I told her we had sugar free cheesecake and no sugar added pies. From what I've heard the cheesecake is pretty good (from a person who hates anything diet-y, and she couldn't tell the difference in a blind taste test), I can't say much about the pie. So she asked how many calories and fat were in some of our other desserts- the carrot cake (hey- it's vegetables!), the cupcakes, the fruit tarts, and so on. None of them were up to her "standards," either because they had too many calories and fat, or because they had some ingredient she didn't like.

By this point, all I wanted to do was shake the women and yell, "Lady, if you're this paranoid about your food, just make it yourself!!"

After almost 15 minutes of deliberating, she eventually settled on the sugar free cheesecake.

It was one of those experiences that I understood and yet I didn't. When I am deep into the eating disorder, the idea of dessert is absurd. I wouldn't trust anything not made by myself anyway, and so I often made a "safe" dessert so that I knew exactly what I was eating. I've interrogated Starbucks baristas about whether they used skim milk and sugar free syrup in my latte. I had calorie counting guides and ingredient lists bookmarked in my web browser. So on some level, the anorexic Carrie understood the paranoia.

She didn't understand why this woman was going to eat dessert if all she was going to do was torture herself, but nevertheless, she got the paranoia.

The recovering Carrie really wanted to throttle her and remind her that this was just one dessert on one day out of the year. Enjoy your f*cking cake! Let it go. In ten years--in ten months, in ten days--it won't matter. I know this woman was probably twice my age, but I've learned that much in my years. The recovering Carrie also couldn't understand why the woman was going to eat dessert if all she was going to do was torture herself- it seems the rational thing to do would be just to skip it.

I'm not unsympathetic to the mental torment this lady was going through, but it pisses me off when I think "Hey, I'm the one with the eating disorder here!" I suppose she very well could have had an ED, too, but it seemed more of the garden-variety disordered eating to me.

Of course, the lady had to come in right before I was scheduled to take my dinner break, and this whole exchange really set off the ED voices. I was thinking that I, too, should emulate this woman's concern over everything in her food- surely it was a good thing, right? Then I started mind reading and wondering what she must have thought about the fact that (gasp!) I had a cupcake last night that wasn't low fat (gasp! gasp!). I realized that I was worried a demented lady might be judging me based on desserts she didn't know I had eaten, which even I could see was a little irrational. I reminded myself that this lady's food drama was only her food drama, and I didn't need a soap opera-length script to find a cupcake.

Another older lady asked me if the apple pie had a lot of sugar in it, and I wanted to say, "Well, yeah, it's pie, of course it has lots of sugar in it. What did you think was going to be in there- cod liver oil?" But I just said yes, I'm sure the pie probably did.

This incident brought up all sorts of conflicting emotions in me from guilt (why aren't I doing this?) to relief (I sure am glad I'm not doing this!). I know that these incidents are going to be inevitable when you work in a bakery, but I wasn't prepared for the torrent of thoughts and emotions that flooded through. The big difference is that I'm able to see just how ridiculous this whole scenario was.

The word "no" is so fundamental to my eating disorder. No thanks, I've already eaten. No, I think I'll pass. No, I'm busy tonight. It was a lot about avoidance. If whatever it was might interfere with my eating disorder, I said no and backed away. And the eating disorder itself was a house of cards built on the concept of no: no food, no rest, no flesh, nothing.

As I work more in the bakery, I am being asked about how certain things taste or which items I prefer. Sometimes I'm honest and say "I haven't tried that," but sometimes I spin fairy tale stories about how good a particular item is. Part of it is my Inner Writer coming out, and after 10 years of anorexia, I have gotten pretty good at imagining what things must taste like (okay, the little descriptions on the back of the signs don't hurt, either). The irony is this: I can imagine what many of these things must taste like, but I have much greater difficulty imagining myself eating them. It's not the decadent items themselves that cause anxiety, it's the idea of saying yes to them.

So why does saying "yes" cause me anxiety? If I distill the question down long enough, I get this answer: shame. Shame of eating these things, shame of spending so much money on them, shame (and this is the kicker) of wanting them. It is hard for me to want things- it triggers all sorts of feelings that I'm greedy and selfish. I've more or less accepted that I need to eat, but it's hard for me to accept wanting to eat.

I am, by nature, a rather avoidant person. Much of the avoidance is rooted in fear. This fear, combined with a pervasive sense of shame, led to my decade of "no." It's a habit at this point, though not a good one, and I know that this mindset (the "No, don't" mindset) needs some work. Working in the bakery, there are often samples around, samples that we can try- as long as the customers don't see us. I've steered clear of those, with only one or two exceptions. My co-workers will help themselves and see nothing wrong with it. I have a hard time imagining myself actually just shrugging my shoulders and taking a bite.

I challenged this a bit the other day when I had the equivalent of a small slice of cake as part of my evening snack. I challenged it a bit more today when I bought a four pack of red velvet cupcakes for my parents and me to try. Whether I'll ever start my own personal "quality control" efforts for all the items in the bakery (as one of my co-workers puts it) remains to be seen. I doubt it. But I'm trying to start saying yes just a little bit more often. Yes to food, yes to something new, yes to life.