Saturday, October 31, 2009

In our family we usually celebrate milestone events by getting together to share a meal or at least a cake. But one of the hundreds of things that suck about 'Ed' is that he has put the kibosh to that family tradition, at least for now. This week Emily achieved a significant goal in her fight against anorexia - she reached her goal weight of 110. But although it was the hardest thing she has ever done we didn't turn to her and say 'congratulations, you did it', and it didn't even occur to Derek and I to take a private moment to acknowledge how relieved and grateful we felt that we've all made it this far. Instead we just moved on to the next topic on the list of things we needed to discuss with the team. Our only acknowledgement to Emily was that she could switch to skim milk and cut out one snack a day. It wasn't until the next day that I realized the magnitude of this milestone, Emily is weight restored and we have finished phase one of this treatment process, only two phases to go.

That prompted me to read about the next phase of treatment in my reference books which state that the goals of the next phase are:
  • for us to maintain management of the eating disorder symptions until Emily shows evidence that she is able to eat well and maintain weight independently
  • to return food and weight control to her
  • to explore the relationship between the anorexia and normal adolescent development issues i.e. self esteem, body image, relationships, independence
I don't allow myself to envision Emily eating independently yet because it seems so far off. While she is eating snacks and lunches as school she finds it extremely difficult to eat in front of her classmates and she will only take what she considers 'healthy' foods to school. She still isn't comfortable with the idea of having any family members in for a meal or with going out to a restaurant. She will eat what I feed her but won't participate in choosing or preparing it. She will help herself to snack items occasionally but only if I give her permission. The Team have advised to work on these challenges one at a time until she is comfortable with it because stacking them up will be too overwhelming for her. I have found that when she sets the challenge for herself she will meet it, like snacking and then lunching at school, but if I try to get her to do something she won't do it. Tonight we are going to a Halloween party and I will be curious to see if she is able to eat anything. Maybe eating in front of ghosts and goblins will be easier. She mentioned that Thursday is pizza day at school and she would like to be able to participate in that soon. We tried take out Chinese recently and that didn't go very well. Damn I want my old life back! Actually what I want is to go back about five years and get to do it over in a way that would prevent Ed from getting through the door.

As for the last goal of this phase, exploring the relationship between Ed and adolescent issues, I am very afraid of what that will entail. I am exhausted from phase one and don't know how to muster the energy to learn the new skills and behaviours that the Team is promoting for her healthy emotional development. The kinds of issues we have to deal with loom large in my tired mind. She needs to become less attached emotionally to us because right now she can't even sit in a movie theatre with someone between she and I. She needs to develop peer relationships that are more appealing to her than her relationship with us and she hasn't spent any time with friends in over a week. She needs to become accepting of her body image but she won't even go swimming yet because she doesn't want to be seen in a bathing suit. She also needs to get ready for dating and be comfortable with her sexuality and at this point in time that seems at least five years away to me. And our reward for her achieving all this adolescent development is that we get to deal with the kind of typical adolescent behaviour which we all know drives adults crazy.

Apparently one of the purposes 'Ed' is serving is to be a big wake up call to the fact that how you parent a child is vastly different from how you parent a teenager. My new term for this stage of my life is 'full frontal parenting', and if that has military undertones it is meant to because I feel like everything about my parenting style is underseige and that I am having to regroup and remuster every 10 minutes.

But old habits die hard and I gave into one yesterday and cooked a dutch apple pie to for us to eat and celebrate Emily's successful weight restoration. She gave me a quick flash of Ed's disapproval over the idea of celebrating but she tucked in and ate most of her normal sized piece of pie leaving behind a piece of crust that frankly I left behind too because it wasn't homemade.

And now it is time to figure out what to cook for supper, make my party appetizer, get my costume ready and finish putting up the Halloween decorations. And if anyone else asks me what I do all day I am going to lose it.

Thursday, October 22, 2009

When pimples mean progress

Emily is continuing to make excellent progress. She gained two pounds this week which means she is only two pounds away from the bottom of the ideal body weight range for her age and height. And what is really amazing is that she has actually come to realize that she feels much better at this weight.

The advantages of her reaching the goal weight are that she can switch from 2% to 1% milk, her hair has stopped falling out and she is able to take on more physical activity. She will be starting phys. ed. tomorrow, but is only able to let her heart rate reach 120 beats per minute for this week, and she plans to start walking to school. I was concerned that she would have to increase her caloric intake to compensate for her physical activity but that is not the case because once she is at the goal weight she would have needed to reduce her intake in order to not continue gaining. But by adding physical activity she can maintain the same food intake and maintain her weight. Well that's the theory at least. The down side of reaching her goal weight is an increase in acne because her body is producing estrogen again and I am sure many of us can relate to the horror of teenage pimples.

Healthy Emily is present so often now that when Ed shows up it is readily apparent. She becomes totally silent, motionless and gives off a very troubling aura of intensity. I can spot Ed at 50 paces these days, I don't even have to see her face to know when it is happening because the change is so dramatic. Sadly she turns into the girl she has been for the last year so we are very familiar with what Ed looks like only now we get to see it in contrast to healthy Emily.

Emily has managed her morning snack at school with no problem and we have progressed to me bringing lunch for her to eat in the car and she takes her dessert into the school to eat with her classmates. Her motivation is to have more time to socialize with her classmates. She is really enjoying school, and the people there a great deal. She started taking German and Mandarin and I am in awe of her ease with speaking German. Her teacher asked her if she had taken it before because she sounds so natural. She is also playing the piano again and she has been jamming at school with a couple of other students, both of whom are outstanding musicians. There is a school fundraising event this weekend, a bake sale on Spring Garden Rd. in front of the Gardens, on Saturday between 10-2. She is looking forward to participating and even hopes to be able to make some marble squares to sell. So if you are in the area on Saturday bring your cash and get some goodies.

Today, she set the goal of taking her school blazer off during class. She is the only student who wears her blazer so she is starting to feel like she is standing out. When I met her at lunch she said she did it. It was harder than she expected it to be at first but it got easier after a while. Ironically, she noticed that a couple of kids left their blazers on today. She also commented that she has the most 'fitted' white shirt which made her feel a little awkward. In fact the white shirt, which is one of her H&M purchases from the weekend, is very flattering, so although no one said anything about her not wearing her blazer I am sure that the boys in her school noticed.

Emily thinks she might try lunch on her own at school tomorrow. Derek and I are both apprehensive about that but we have to let her decide if and when healthy Emily is ready. And we will have a contingency plan to compensate for any uneaten food. She is planning another weekend of socializing with friends just like a real teenager - phew that's a relief.

Her session with the Team yesterday gave her some tactics to use to reduce her Ed thoughts at meals. She is going to tell herself that 'yes this meal is hard, but it will be over soon and then I don't have to think about eating again for another three hours'. She is also going to try to go to school all day instead of just mornings, so today is the second afternoon she has stayed this week. She has been avoiding Thursday's drama class and can't quite articulate why, so it will be interesting to hear what she discovers about herself today.

She told me last night that she feels like she is not in the same league as the rest of the students in her class because they all seem to be very smart and accomplished at one thing or another. She said she is the least motivated student in the school. I missed the opportunity to ask her how that made her feel but today when she told me she signed up for an extra course, grade 11 biology, I realized that she might be feeling the need to work harder to feel like she belongs and deserves to be there. I plan to explore that with her tonight and give her the chance to label and voice her feelings rather than suppress them. I have been reading up on how all eating disorder patients suppress their feelings through starvation because the process of restricting food intake is a very time consuming distraction from all other thought processes and activities and one of the physiological affects of starvation is that it numbs the mind. Emily can't really remember much about the weeks before she went into the hospital because she was so starved that it is all a blur to her, but she does remember that it wasn't as hard to endure as the first month of treatment was. So now she has the opportunity to learn how to express her feelings in appropriate and productive ways so that they don't fester inside making her need to rely on Ed to help her suppress them.

The challenge of course is that Derek and I are both emotional suppressors so it means that we have to learn to do this ourselves so we can model emotional intelligence for her. Many of us think that suppressing our feelings is a sign of emotional maturity but in fact it is not because suppressed feelings not only cause sadness and a host of mental issues like passive aggressive behaviors and depression, they also cause physical illness. The alternative is to use our feelings to guide us through our lives by using them to understand what makes us feel good or scared or joyful or anxious. Today as I listened to the news about the Canadian dollar reaching parity with the US dollar I started to enjoy a happy memory of a shopping trip south of the border, but then the reporter started talking about how bad the rising dollar is for Canadian truckers, my little moment of joy got squashed by feelings of fear for the economy and sadness for the truckers. But I chose to use that feeling to guide my actions and change the damned radio to a station that was playing soothing music that took me back to my nice memories. Bad news makes everyone feel bad and yet we willingly expose ourselves to it relentlessly in the name of what 'social awareness'. How can we justify trading off our mental, emotional and physical health for a cursory knowledge of current events? I know that from reflecting on my own life and from watching Emily suffer so much that we ignore our feelings at great peril. But man oh man, it's gonna take a lot of work to change 50 years of conscious and unconscious habits. How ironic that the song, 'We've only just begun', by Karen Carpenter, who died of anorexia, is rattling around inside my head as I ponder this stage of treatment.

Well I gotta go finish cooking up my newest recipe, peanut chicken noodle something or other. Fingers crossed that she'll like it.

Monday, October 19, 2009

"Having a social life is a lot of work"

Thursday evening, as Emily was trying to line up her social calendar for the weekend, she remarked that "Having a social life is a lot of work". That one little phrase, caused a mini avalanche of emotions in me. I was relieved that she is engaging with her friends, which she hasn't really done in a year. I was saddened to think that she has been missing out on so much living. I was dumbfounded, yet again, to realize how oblivious I have been for so long. I was filled with hope that she will continue to stay engaged and experience the joys and challenges of adolescent friendships. I was amused by her sense of humour.

The weekend was full of normal person activities (NPA), including a birthday party on Friday night, which allowed Derek and I to go out to dinner by ourselves, a visit to the Farmer's Market with a friend, a Saturday night outing with more friends, a clothes shopping expedition on Sunday and the crowning achievement, doing morning snack at school with her peers (she had been joining me in the car in the parking lot for snack).

Each of these events posed significant challenges for Emily but she wanted to find a way to make them work for her. Each act of independence from Ed is a cause for celebration in my books. The strategy is to get her so engaged in her normal life that she will be more motivated to give Ed the boot. When she asked the Team about doing snack on her own, their response was, 'can you trust healthy Emily, to eat?' Which I thought was a very interesting way to put it and I will use that approach with our next challenges.

For the birthday party, which included a supper buffet, she chose to eat supper before going so that she wouldn't have to deal with making food choices there. She is allowed to eat whatever she likes beyond what we feed her, so the Team told her to eat party food if she felt like it, but to not put any pressure on herself. She wasn't ready to eat in front of her peers but she had a big snack when she got home because she was hungry. She commented that she liked being at the Farmer's Market because she was surrounded by so many people enjoying eating so many different kinds of food and they didn't even appear to be concerned about what they were eating. I am not sure if she believes she will ever get to that mind set. I know it is only since this whole thing came up that I have realized that I have to make a conscious effort to simply enjoy my food without thinking about whether or not I can afford those calories.

The shopping trip was interesting because she really loved the clothes at H&M but she had to work so hard not to let choosing sizes and looking at herself in a mirror bring out Ed. She said it was about a five or a six out of ten on the anxiety scale, the jeans were particularly hard. I guess bathing suit shopping is a little way down the recovery road. She managed to meet the challenge to the tune of a little over $200 so all in all very successful. Then we had a smoothie in the Food Court which was also tough on her, especially since there was a table of teenage girls nearby who were creeping me out with their intense stare in our direction. (I think they were mesmorized by Emily's gorgeous hair).

In spite of these wonderful improvements, she is still very attached to Ed. One of her therapeutic goals this past week was to find a way to stop focussing so much on her food at meal time. We work very hard to distract her with games and conversation but she sits and stares at her food, moves it around her plate, eats tiny bites, eats the easy i.e. low density, low calorie, foods first, complains of feeling too full to finish and sometimes she just sits there while tears well up in her eyes trying to find the strength to take another mouthful. Some foods seem harder than others. She really struggles with eating chicken or ground beef, which are the only two none vegetarian proteins she has managed to eat. I spent several hours scouring some websites for new recipes based on things I know she likes, but the vegetarian options require larger portions which she can never finish. But even with her struggles at the table she continues to gain weight. Last Thursday she was up to 106, which is really great considering how much more active she was. She is taking in enough calories and she is eating many meals much faster than she did initially. And her need to be distracted when she is finished a meal has lessened in some cases too.

This week's meeting with the team will be the first one where she will start doing some cognitive behavioral therapy on Ed. She has been doing a little bit at each session but this week she will spend a significant chunk of time alone with the psychologist and social worker and then Derek and I will join them to find out what her goals for the week are and to discuss any problem areas. I am still a little concerned with the affects of the Zoloft because although they are keeping the dose at the 75 mg level, to me she seems a little too happy, but then again I don't know who the real Emily is anymore, maybe without the depression and anxiety she is a really cheerful person.

Yesterday I felt a sense of mental relaxation that I haven't felt since all this started. It is amazing how comforting 'normal' can be, when you haven't had it for a while. It feels like the very worst is behind us, even Emily has said she feels that way too. I know there are far worse situations that a person can experience but I would not want to relive the last seven weeks and I wouldn't wish it on anyone else either. We are grateful for all of the support we have felt along the way from everyone who is out there wishing us well. Keep the jokes coming. I look forward to having a big celebration feast with all of you when Emily is ready to enjoy it too.

Wednesday, October 14, 2009

A flickering light at the end of the tunnel

The last week has seen some amazing improvements in Emily which I can only attribute to the antidepressant medication taking effect. She is much happier, more well rested, has fewer headache complaints, more energetic, is eating a little faster and is genuinely engaging with people and activities.

She has attended four half days of school and seems very comfortable getting back into the swing of things. Saturday we had company over for Rumoli and she joined in with a mid afternoon snack which marked the first time she has eaten in front of anyone, other than Derek and I and hospital staff, in five weeks. Sunday she went to a friend's house for the afternoon which was the first time she spent time with a peer since coming home from the hospital. That was followed by her participating in a Thanksgiving dinner with my family. She took an Ativan to help her through the event and while she didn't quite finish her meal, she did have an dinner roll before we sat down so her caloric intake balanced out quite nicely especially since she also had a small piece of pumpkin pie. She took a lot of wonderful photos of all of us, many of which will make good blackmail fodder. On Monday I took her and a friend to the Fall Fair and then we went to Derek's family Thanksgiving dinner. She relied on an Ativan again but she not only ate everything I asked her to eat, she also drank some real coke and ate at least two small pieces of apple pie for dessert. I would expect her to have gained more weight this week but she has been so much more physically active that she may not have increased all that much.

Her weight last week was 104 and the weight they want to see her at is 110, so six pounds to go, at 1-2 pounds a week now seems doable. After that she will be more mentally ready to start the therapeutic work on Ed and maybe start doing a small amount of exercise.

Yesterday I wondered around enjoying a small but not insignificant sense of relief. It was not a great big huge sigh of relief because I am too wary of Ed to think huge steps forward are likely and because I am too weary to feel much of anything. But more alarmingly, Emily has started to exhibit some new odd behaviours like jumping around, making weird, almost childish, noises with her mouth, being a little more aggressive in her reactions to Derek and I, constantly moving her feet when she is sitting down and flitting from one activity to another. This morning she complained of feeling jittery and shaky on the inside and having a headache. I think, based on my web research, that she is reacting to the antidepressant. I called the team to make sure she sees the shrink when we go in for our weekly session tomorrow. Her dosage was increased five nights ago so perhaps she doesn't need as high a dose as they expected. I hope they don't have to take her off this drug because her mood has been so great since Saturday. She is even going to a friend's birthday party on Friday night, something she hasn't done in almost a year.

I would hate to see her have to go through the torture of coming off one antidepressant and starting another because that takes weeks and the Ativan is not a good alternative. On the other had, from what I have read about adverse side effects of Zoloft, she could be headed from some really unpleasant reactions including an escalation of self harming thoughts and anxiety. We will have to wait to see what the shrink advises tomorrow, but for today we have happy Emily, at least between meals.

Gotta go finish making lunch, pizza and salad, and pick her up from school.

Wednesday, October 7, 2009

It's always darkest before the dawn

So far this week has been every bit as bizarre as the last four. The antidepressant hasn't kicked in and Emily's mood has continued to decline with a few dips into utter dispair and hopelessness. Then when she's had an anti-anxiety pills she is almost happy.

She has been unable to finish at least one meal a day, unlike last week when she finished everything. It appears that Ed is working very hard to keep control of things, maybe it is his last big fight, maybe she has to feel this miserable because she has been suppressing her pain for so long that it just needs to come out. Maybe this is a good thing, but it is a misery to witness and very scary to think that she may not get out from under the burden of this horrible illness.

Today we saw the Team and they are a bit mystified as to how best to motivate Emily because she has lost interest in everything. She hasn't picked up her knitting or crafts all week, she struggles to do even a bit of school work, and she hasn't seen any of her friends or family. She must be getting sick of looking at me and Derek! But they have decided, with our full endorsement, that Emily should go back to school tomorrow and Friday morning and see how it goes.

She is very anxious about school because she doesn't know what to tell people, she is afraid of the pressure of school work, she can't imagine what do to about snack and she can't bear the thought of wearing her school uniform skirt. Of course we can help her maneouver all of these things, but I think a big part of her reluctance has to do with not knowing who she is without Ed. She has been defining herself as the person who restricts and doesn't'eat and now she doesn't have that persona intact any more and she has said repeatedly that she doesn't know who she is without Ed.

I can't wait for her to get out of the house and have the chance to focus on something else and I am really looking forward to having 2 whole hours to myself from 8:15 to 10:15, which is when I have to circle back to the school to do snack with her.

Gotta go get supper on the table.

Sunday, October 4, 2009

Better Living Through Chemicals

Emily has started taking an antidepressant medication, which will take a couple of weeks to kick in and in the meantime she has an anti-anxiety medication she can take before meals to make refeeding less stressful.

The medications are meant to give her some help with getting through the refeeding because the eating disorder thrives when the brain is malnourished. It thrives because a malnourished brain produces less serotonin, a brain chemical which we all have, that, gives us self-confidence, a feeling of safety and security, causes us to feel sleepy, and gives us our appetites.

The antidepressant can't increase the serotonin but it can change the way the brain uses it which can over time cause the brain to produce more serotonin. Unfortunately in anorexics, their brains produce even less serotonin as they are gaining weight which continues until they are close to their ideal body weight which is when the brain chemistry normalizes again.

So until the brain's serotonin levels are normal, Emily will continue to have high anxiety and obsessive thinking over all Ed related issues which include, food, eating, weight gain, body image, clothes, relationships, self esteem, exercise, restricting and purging.

The energy Emily has to expend to deal with the anxiety and obessive thinking have taken their toll. She is emotionally and mentally exhausted and suffers from insomnia, which together are a recipe for the constant headaches she is experiencing. Under these conditions, anything beyond eating six times a days and activities that provide a distraction from the Ed thinking are all she can manage. But hopefully she can squeeze in a few hours of school this week and a guitar lesson. They will also provide some welcomed distraction which we hope will outweigh the angst she feels when she thinks about doing them.

Today at lunch she took the anti-anxiety pill for the first time. It really zoned her out, and it's always freaky to see your kid a little high. I will be interested to see what she thinks about the experience once she sobers up, which should be anytime now. This drug is addictive so she will only use it for the next two weeks until the antidepressant kicks in.

The antidepressant has some side effects including drowsiness which in her case is a good thing because she takes it at night and it should start helping her to sleep through the night very soon. It also causes some stomach and bowel upset but so far she hasn't complained very much about that. The most frightening possible, but rare, side effect is an increase in suicidal thoughts. She was given the drug with the condition that she will tell us if she starts to have kind of self harming thoughts and we have a 24 hour emergency response phone number to use if that happens or we can take her to emergency right away. The shrink, Dr. C. has never seen this happen in eating disorder patients so she is very confident that it won't happen with Emily, but we will have to be vigilant over the next few months.

The other interesting thing that happened this week was that we found out Emily has been lacking confidence in us using the Maudsley Approach to treat her disorder. She had been doing her own research on treatment options and she was afraid that we weren't using the best one for her, partly because she knows they aren't treating the illness yet, but also partly because Ed knows this approach is working, as evidenced by her weight gain, and he doesn't like it.

The Team spent some time talking about the need for her to refeed before she will have the mental and emotional energy to devote to the therapy which will focus on changing her thinking and behaviours. And we assured her that we felt the Maudsley was the best approach for our family but that if it didn't work we would try every other approach out there. But it wasn't until she found the Maudsley Parent website and devoured everything on it, that she became more confident in this approach. She really turned a corner on those fears on Thursday morning which in turn resulted in a really good day for her.

Unfortunately, she got sucked under by Ed thoughts yesterday when she was dressing because she spent too much time looking in the mirror which generates a host of distorted images and thinking. And today she was deeply disappointed over not being able to volunteer at the Run for The Cure, which we have done as a family for five years. Because she needs to shift her thinking from Ed as a friend to Ed as a foe, I took advantage of the opportunity to remind her that Ed was the reason for her disappointment.

On the upside, she has found enormous comfort from a couple of books she's been reading on eating disorders. And she discovered that laying her clothes on her bed can give her an idea of whether or not they match without having to look in the mirror. She's a smart girl. She'll get there.

A little therapy for the whole family

It has been a week of highs and lows. Wednesday was extremely intense for all of us and Thursday was the brightest day we've had in a very long time. Friday was good, Saturday was just okay, today, Sunday, is teetering back and forth between not good and okay. I know this is a normal pattern for recovery but knowing doesn't preclude wishing for things to be better.

On Wednesday, when we had our session with the Team, Emily was reluctant to express just how much pain she is experiencing to them. She and I had talked about it the night before and I encouraged her to write down her thoughts to help her bring them up at our session, but she doesn't trust the Team members enough to let her real feelings out.

The Team spent quite a bit of time talking about the need for Emily to stop bottling up her feelings. In fact, all three of us have work to do on allowing ourselves to feel and express our anger, frustration, sadness etc., etc., etc. We are a trio of emotional suppressors and accommodaters, we don't like having negative feelings and we certainly don't like letting them out of pandora's box. But as we were told, unreleased anger and sadness causes more problems than it avoids. I am grateful that Emily will have the chance to learn how to deal with her negative feelings as an adolescence so that she won't have to carry those behaviours into adulthood the way I have. We are currently experimenting with letting our true feelings out of the bag while we are playing Trouble and believe me when I say we are getting lots of practice time in, like six times a day because we play at every meal as part of our 'distraction' from Ed strategy. I'd say that so far we have only scratched the surface of the issue of letting our feeling out, but I am planning to take it to the next level real soon. I can't wait to see the looks on their faces when they hear me yell out my frustration the next time one of them sends me home when I am only one space away from being safe.

Gotta go start lunch! Here comes those feelings of dread that she will find lunch too painful. Guess I haven't managed to let them go yet.