by Paula | Sep 29, 2014 | Anorexia sucks, Our ED Story
In an earlier post I wrote about last summer’s family reunion, and how we used the occasion to address my mother’s advancing Alzheimer’s. Unfortunately, Anorexia was another unwelcome guest at the reunion. Before my own daughter (called Guzzy here) was afflicted, I had only a casual understanding of Eating Disorders, and I knew my own family was struggling to understand. I sent the following letter to help my supportive family know what to expect.
Anorexia will be an uninvited guest at our family reunion this summer. This letter provides some basic information about anorexia and how it affects its victims, while giving some practical advice to make sure anorexia does not put a damper on our event. As my sister has said, we WILL have fun!
Please Do not ask ‘why’ or other questions designed to figure out how this happened. While I realize that these conversations would be initiated with good intentions, there simply is no good answer. Conversations about the root cause of the illness can cause feelings of guilt and stress. Any ‘blame’ should be laid squarely at the feet of the illness itself. (more…)
by Paula | Sep 14, 2014 | Anorexia sucks, Our ED Story
Our daughter, Guzzy, was weight restored from anorexia (ana) the winter of 2013, was back to school full-time, and was regaining more age-appropriate independence with her eating. This was all fabulous progress! At the same time, we were struggling to get over the final hump to full recovery. Ana’s grip on Guzzy had weakened; it was a mere ghost of its present self, but Ana was still there tugging at the corners of Guzzy’s recovery.
It turns out that a trip to Hawaii was just the ticket! We had a some extra money that year and I was looking to take a fancy trip for spring break. Tentative plans with a friend to join her and her girls in Jamaica fell through, and it seemed the perfect opportunity to visit an exotic location that I have longed to see: Hawaii!! So, I booked the trip for the March spring break.
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by Paula | Sep 12, 2014 | Anorexia sucks, Our ED Story
Wow. I didn’t know my mom wrote about me so much, and with such respect and awe. I almost cried reading some posts due to their painful memories as well as my mom’s determined and mindful thought process as we were going through all that stuff with Ana and stuff. Just to correct something that I think is somewhat relevant, what i suffered from was not ED; it was Ana. At first, she was my friend. She was my warm sweater and tea in the wintertime. But then the sweater got itchy, really, really fast. Instead of just being something that I could rely on, she became an addiction. She claimed all of my attention, refusing to let me speak to even my friends or my parents about the most menial things. She, along with Dessa (depression), took all my time and all my patience. I herded myself in my room every night that I could, claiming that I had homework, and stayed there. I listened to Reggae, lit berry-scented candles, and looked at pictures of food.
Enough about the beginning struggle, though. Shortly after my diagnosis, mumma changed her way of speaking to somewhat soften the words she was saying due to my almost volatile and sensitive personality at the time. She always knew the right things to say. She would dance around the question with big words that I knew she had chosen just for that moment to avoid saying a word that would make me become confused and anxious about what she was saying. You know how therapists talk? With almost a hesitant confidence that is hard to explain? Yupp. They talk just like my mumma. They also don’t take any bullcrap. Neither did/does mom. She knew how to say things, and I read how she was somewhat careful and angry, but she never showed it. She is an incredible, powerful, feisty lil mumma, and I wouldn’t trade her for a million dollars or Zac Efron. Now THATS saying something. 🙂 I snuck this in her blog while she is squawking at the Brewers on TV downstairs with my stepdad. I hope she doesn’t get mad, but I just wanted to let her know, in some sort of way, that I am basically astounded at how much love that she has for me, and I’m humbled. But not so humbled to not want to brag about it a little bit. I’ll do everything that I can to return that love with actions, since I realize that words are never going to offer up enough thanks for all she has done for me. <3 Love ya, Mumzy! Your website looks great, by the way. 🙂
Toodles!!
by Paula | Sep 9, 2014 | Anorexia sucks, Our ED Story
The saga continues as we shifted our focus from Phase 1 (re-feeding) to Phase 2 of Family-Based Treatment (FBT) for our daughter’s anorexia. An important phase of her treatment continued at home after her release from the hospital.
During the re-feeding phase it was our job to feed Guzzy 3 meals and 3 snacks a day while monitoring her 24/7. Her role was to eat what we served her without question or negotiations. We allowed her 3 ‘refusals’, foods we agreed NOT to serve her. Her refusals were hot dogs, bacon and peanut butter. Other than that, I took her pre-ED preferences into account; but I served her many, many things she was uncomfortable eating.
Prior to going to Children’s Hospital in Minneapolis, our daughter was attending a day program at another ED treatment center that used a meal plan with a fairly complicated set of rules about what she needed to eat. Unfortunately, the meal plan became a battle ground of negotiations, confusion and debates. I will never forget the Great Cheese Debate: does a serving of cheese count as a fat or a dairy or BOTH? This was the cause of many arguments, requiring several emails to the program nutritionist, who MADDENINGLY, didn’t give a straight-forward yes or no answer.
Anorexics will fight to minimize what they eat any way they can–because they are mentally ill and are incapable of making healthy choices. The ED makes them very crafty and manipulative in their avoidance of food. As with most ED sufferers, Guzzy was hyper-aware of what she was eating, carefully assessing every item we fed her to make sure we weren’t giving her any more calories than the minimum required, and getting upset if we bought higher-calorie choices of bread or yogurt. Another ED parent told me that her daughter would count the blueberries on her cereal to make sure it was not even one berry more than was required. In our case the day-to-day battles over the meal plan distracted us from the war against the ED. We were winning most of the battles, but we were definitely losing the war.
Family Based Therapy (aka the Maudsley approach) puts the parents in charge of the feeding. This proved to be a difficult, yet effective approach. We quit negotiating with the ED and took charge. The expectations were clear and I became a brick wall against all the excuses complaints and tears that ED had to offer.
We removed all labels from foods right after coming home from the grocery store–it was the only way to stop the calorie counting. After starting FBT we forbade Guzzy from coming into the kitchen. I wouldn’t give her food (such as yogurt or applesauce) in the original container; everything went into a bowl – preferably in a large bowl so the serving looked smaller. I networked with other ED parents continuously to find new recipes, and other helpful hints for getting those precious calories into our children. My husband and I became experts at making a variety of calorie-dense smoothies, as for a long time Guzzy found it easier to drink calories rather than chew them.
It wasn’t all drudgery. I read several books aloud to pass the time during meals, and we got through several of the #1 Ladies Detective Agency series together. Guzzy and I played many energetic and competitive card games to pass the time, games that were punctuated by frequent giggling fits that often escalated to an incapacitating level of laughter and tears. It was the kind of laughter that can’t be explained to anyone who wasn’t in the moment, and often left my husband shaking his head in wonder.
After a couple months of re-feeding at home Guzzy’s physical symptoms improved significantly; her hair stopped falling out and started to return to its former luster; her menses returned and; one memorable afternoon she looked down at her lap, looked back up wide-eyed and announced “I HAVE CLEAVAGE!”
The physical cues as well as her improved mental state were the signals that it was time to move to phase 2. Phase 2 involves a gradual return of some control by giving her some choices with what she ate. This could be as simple as choosing between juice or milk for a beverage. It was really hard for me to shift into phase 2, since I was giving up the hard-won control I had (finally) established over the ED. It felt wrong for us to give her choices, since she had made such poor choices when she was very ill, and we were afraid she would backslide. This phase of the treatment has less well-defined parameters or guidance. I did a lot of research and found some guidance on line, but it boiled down to us following our instincts.
We had several parental conferences, and struggled to define parameters that we all felt comfortable with across the two households. Ever so cautiously, we gave Guzzy limited choices. we setup a snack box from which she could select item(s) for her snacks. She often asked for me to purchase something as a snack choice, and I accommodated reasonable requests. She went back to school for one class a day and she would eat morning snack at school with a trusted friend who would report back to me and her dad.
Phase 2 (like phase 1) was a see-saw journey. She started attending school for one class a day. Going back to school was really hard, and there were days she just wasn’t up to it. As long as she was eating we didn’t always insist on school attendance; we were still picking our battles. There were some bad days, like when we found a stash of uneaten food in her room; but as the weeks progressed she continued to get healthier.
By the time second semester started in January, Guzzy returned to school full-time. We arranged her schedule so she could come home for lunch every-other-day, and eat with her friend on the alternate days. Her very first class of the semester was gym, and the first unit was… (wait for it)… swimming, in a boy/girl gym class, wearing swimsuits… in front of other high schoolers. You had to be kidding me!!! Fortunately, Guzzy’s Doctor agreed it was simply too much, too soon, and wrote her a pass to get out of swimming. She spent the unit running errands for the teacher.
The first few weeks back in school were rocky, but she persevered and really wanted to resume a more ‘normal’ healthy lifestyle. She relished the relative freedom of Phase 2, and as long as her weight stayed at a good mark, we continued to loosen the reins.
This brings us to February of 2014… things are about to take a tropical turn for the better.
by Paula | Sep 3, 2014 | Anorexia sucks, Our ED Story
This post continues the saga of our battle against ED last year. (if you missed the first post, click on Eating Disorders Suck!)
In September, 2013 my daughter (hereafter referred to as ‘Guzzy’–the name my Alzheimer’s stricken mother coined when struggling to come up with her real name) and I linger in Minneapolis after her discharge from the hospital to hang with my oldest daughter and family; which includes baby twin girls–who served as a joyful distraction from Guzzy’s illness. . We stayed with them long enough to participate in the Minneapolis NEDA fund-raising walk and for a few outpatient appointments, before heading home 250 miles away.
While driving home, I was stricken with the most horrible stomach flu of my life, stopping at every rest stop along the way. Within 24 hours Guzzy is stricken too. There’s nothing like a full-blown case of stomach flu to throw a re-feeding program off kilter! However, we powered through it, and once we were both healthy again, we set to the re-feeding task in earnest.
We had many bad days; the ED fog would descend and she would sit and stare at her food, sometimes crying silently. Her pain was real. I read to her to distract her, which sometimes worked… sometimes not. Guzzy was not the type to scream, rant and throw things (some are); instead she turned her pain inwards–which was heartbreaking to watch. The meals she absolutely couldn’t eat, we substituted Ensure or a smoothie. It would have been the easier way out to ‘cave’ to the ED and let my sweet girl simply leave the table without consuming the needed calories… but I loved her too much to do that. We were in this for the long run.
I would plan, shop for, prepare and serve three meals and three snacks a day – maximizing the calories, while trying to keep the food footprint to a minimum, since it was so physically and emotionally difficult for her to eat. Lots of smoothies, and recipes with calorie-dense ingredients.
Guzzy had many uncomfortable and downright painful stomach and digestive ailments. This triggered a series of medications and treatments since reducing the intake causing the distress was simply NOT an option.
Guzzy and I were joined at the hip for weeks: Our lives were a blur of sleeping,cooking, eating, cleaning-up; intermixed with a variety of low-key distracting activities. We did lots of puzzles, played hours of cards, and read books aloud to each other. When Guzzy slept, I planned meals, went grocery shopping, cooked and cleaned up after meals. Our days were a blur in the same sense that days with a newborn baby are a blur.
We had OK days and we had bad days. We had days where there would be a crisis of some sort, and I’d be convinced I was doing everything wrong. I would reach out to the therapist and/or my virtual network (the internet is a wonderful thing) of other ED parents; and the message was always STAY THE COURSE. YOU ARE A BRICK WALL AGAINST THE ED. DO NOT GIVE IN TO THE ED. Eventually the OK days started to outnumber the bad days.
I was communicating with Guzzy’s dad (my ex) on a daily basis, and we had frequent family meetings to discuss progress and how to handle the next steps / challenge. After several weeks Guzzy started spending some time with her dad. Stepdad Dan was also very supportive
After the initial 4-6 weeks of refeeding, Guzzy was healthier and her medical issues, including her digestive issues, started to subside. We still had some bad days, but they were the exception. I described her status as ‘over the hill, but not through the woods’. We would have 4-5 good days, followed by a horrible day… rinse and repeat.
I’m a little tired from just reliving this period. It was intense. If you’ve gotten this far… stay the course ad read Eating Disorder Suck Part 3 , it gets better!!!
