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Charlotte_UK

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Reply with quote  #1 
I have noticed lots of posts about going to college or hitting weight targets and no magic happening, so I think it would be a good thread to start.  These are my opinions only

Firstly: w/r does NOT mean that the eating disorder has gone.  It means that the body has reached a place where it is stable and the cognitive issues can begin to be sorted out because there is enough energy in the body to sustain repair - remember Janet Treasure's the brain takes 500 calories a day just to run.

As a caveat, some people find that symptoms of the eating disorder begin to disappear quickly at this stage and others find there is no difference.  I think this depends on two things.  Firstly, the length of the illness.  Even in early intervention and swift weight restoration, the length of the illness seems to be going on for the 2 year mark before the food issues are gone.  Secondly, I cannot underestimate the "Exposure therapy" effect.  I think that repeated exposure to food gradually diminishes the fight or flight reaction to it and repairs the neural pathways.  I believe that we should not discount this therapy and again, from what I have observed on the forum, 18 months to 2 years seems to be the time zone for early intervention.  For those who have had an eating disorder for years, it may take a lot longer for them to "unlearn" what has been a "normal" function for them (ie to restrict, binge, purge, etc).

I think that I, like many other parents, thought I was the exception to this.  I thought I would have the magic solution and my d would be better in a matter of months, rather than years.  I now know better and we have been one of the lucky ones.  I know that and thank God every day for it.

Just because the physical symptoms are better, it does not mean that your child is not dealing with mental torture every day.  They are, and will remain, incredibly vulnerable to this disease for the rest of their life.  To be honest that extra 5lbs, whatever our obesity obsessed society may say, could very well be a life saver.

There is no magic formula for this illness, whichever end of the spectrum you are coming from - whether your loved one is a Binge Eater and overweight, a bulimic and hovering around the normal weight, a restricting anorexic.  The process takes a long time and a lot of calm, kind support.  At the risk of being a kangaroo, I have tried to help d lead as stress free life as I can.  By that I mean, she has to work through things like changing friendships, falling in and out of love, going up a clothes size, eating properly, etc but I have made very clear that we don't mind if she doesn't come top in exams, get in the team, even go to school if she has having a bad day because nothing is more important than her health.  For that, she is immensely grateful and we have moved on to a place where she is dealing with an immense stress (my health) in a calm, helpful, loving way (for the most part).  Just, as she said to me, as I did for her.  However, if this had happened a year ago, when we nearing w/r and the ed was beginning to disappear, I am not sure we would have been in such a good place.

What I am really trying to say is in answer to many of you who are thinking about sending your children to college or wondering why they are not better when they have reached a target weight is that recovery from this illness takes a lot longer than one would expect and recovery is all about a state of optimum function not a number of the scales.

Timeline for us: 2 years and still working on the anxiety.  ed started leaving a year ago.

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Stubbornmum

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Reply with quote  #2 
This is our third year of recovery, and I remember asking that question when I first landed here, " when will she get better?"

I was told and encouraged to concentrate on her weight restoration and I would see a change. Well that's what I did, and there was a marked improvement in her mood, and she was eating everything we prepared and put in front of her.

However initially at weight restoration she was still rigid and not eating outside of meal times, but we accepted this having come through the worst, I shrugged my shoulders and said she is alive and eating and if I had to cook for her for a while longer, well so be it!

So we dropped all expectations and just kept keeping on!

Now having kept the weight on, having established a healthy routine, as well as social events , sport etc, my d is free of symptoms. No ridigity, no fear, no obsessions.

Now I can even talk to her about her feelings at that time, how she felt, how we felt, how we would protect her now and into the future.

She said to me just the other day, that there are times she feels anorexia trying to speak to her, the days she feels " fat" , " frumpy". And we have had the odd blow up, then she smiled and said, " but you know Mum I think these feelings are normal, they are just the same as we all get, the days we call " bad hair days"

She no longer feels freaky, she feels like any other girl does, she tells anorexia to go away she isn't listening!
She also realizes that there are days she will feel low, and that's OK, she is OK, she doesn't need to listen to anorexia, and she will not again.

Time will tell, but we look out for her all the time, we tell her how much we love her, have always loved her , and she has matured into such a lovely young lady.

Time is the final ingredient in this mix, time at a good weight which as Charlotte says repairs the mind and allows the child to accept her new shape and proper nutrition, as well as find ways to cope with lifes ups and downs without extreme anxiety.


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Red

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Reply with quote  #3 
Thank you both for this.
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Louie

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Reply with quote  #4 
It is two years since my D was at the low end of WR. A few more kilos made a big difference. A year ago she was good. Today she is even better. She still has anxiety problems, but nothing like she did before. She still has OCD but not like she had before. Also it is easier to dissipate the OCD now. She is much more in control in the last 6 months. 

I have stopped trying to shield her from stress, and I now refuse to be the catalyst for dispersing her anxiety. I do not feel the need to interact with her when she is venting about her worries. I have learnt. (Thank you Laura) The funny thing is, she is seemingly less stressed now, she has learnt to cope herself. It is all part of recovery and growing up after the regression caused by an ED. 
She has come a long way, it has been small steps. The only leaping bounds in recovery I can recall is when I took her off a long term low dose antibiotic, the change in her was incredible in the space of a week. She still had a way to go and I never would have rushed her or let her see if she could cope.
Every step she took towards independence I really knew she would be OK. She was ready. 
She was very very ill in the beginning and I am grateful every day that she recovered. In retrospect I see that the ED was trying to get her for years before it did, she was pulled out of it's clutches by my Mothering, a few times without me realizing. We have learnt a tough lesson, and I am thankful for it..... 

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M

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Reply with quote  #5 
What a wonderful thread.
So many gems of hard earned wisdom, recovery is beautiful and I thank you all for sharing your stories, you are my heroes.
In admiration,
M

(Stubborn, can you send me your new email please, xxx)

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tdj

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Reply with quote  #6 
thank you, thank you for this thread. I so needed this. we are just now in the starting of recovery. of course since we arent in a e.d. facility yet the hospital we are in have really pushed the calories. physically my s seems to look a little better, mentally well, i just dont know. i do know now, this is going to be a long road.
thank you again .

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IdgieThreadgood7USA

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Reply with quote  #7 
Amen, Charlotte!
I too, highly value the exposure theory of recovery. Which I believe of course encompasses food but it goes beyond that too. Minimizing the unnescessay stress in the environment and concentrating on long term consistent challenging Ed thoughts and behaviors slowly but quite surely weakens ed's grip. I too, like Charlotte believed my bright intelligent loving d would be different but the longer I stayed her at atdt, the more unrealized how much in common I had with you all. Your children were much like mine. It took us about 11/2 years and I continue to see my d's emotional and physical strength and growth. My d has underlying anxiety that pre existed Ed. I have learned that so many suffers also share this trait but now that Ed is broken and gone, she I learning to apply her skills for effective coping of this trait. This is something we all can learn from. We all have obstacles in life. My goal is to overcome those that obstruct my most basic and important needs and accept those that I can't immediately change. It is also a lesson for my d. Emotional regulation, that is learning to be ok with sadness, frustrations and disappointments so that they don't overwhelm your life is an important skill for many Ed sufferers. Radical acceptance in the moments of those things that can't beimmediately resolved, again is an important skill. Self care is another life skill we all continue to learn to develop.
Wow, it's been a long road and I want to say that my whole family has grown in ways I couldn't imagined. I would never be grateful for tis illness or experience but I am grateful for what we have become.

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Charlotte_UK

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Reply with quote  #8 
I would never be grateful for tis illness or experience but I am grateful for what we have become."  That should be your new tag-line, Lisa.  

I am very grateful for how we have grown as a family unit - Team Bevan works pretty well together and has a depth of understanding and love that we would not have had before d's illness.  Stuff that was important before fall by the wayside.  I remember the first time Laura told me that this would take a long time and I remember thinking that Laura was all very nice and everything but I knew Team Bevan would beat the odds and get rid of this evil monster in the next month or so - sigh!  We are still learning and coping every day.  One of the most important signs of recovery for me was that d doesn't want to go away to school or college or whatever - she is happy at home.  Whether that is because she is afraid of ed coming back or because ed has gone and is not encouraging her to try and use this loophole, is immaterial.

The most important lessons for me have been to become proactive, rather than reactive, to look after myself, to let stuff slide, to be kinder to other people and to stop having unrealistic expectations for myself, my family or society in general.  For d, she has learned that the sky doesn't fall in, everybody gets anxious, nobody likes their feet (except the occasional weird person!!!) and there is not such thing as perfection.  For other d and h, they have learned calmness and unconditional love, strength and they both know what true happiness is and that it doesn't cost a thing.

The end result of a fully recovered eating disordered sufferer is priceless.  For those of you in the trenches, don't doubt yourself.  Maternal instinct is a great thing.  xx

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Reply with quote  #9 
Charlotte, Thank you for this beautiful thread.
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WeNWinning

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Reply with quote  #10 
Charlotte,

Your wisdom is wonderful to share with all.

Similar to what I have realized having dealt with my D's illness for over a decade.  Interestingly, it was the clinicians we had who were all highly regarded ED experts in our metro area, who didn't realize what you are saying.

I instinctively knew that my D  needed to be at a higher weight, that she needed to maintain a higher weight long term, and to live a stress free life.

But NONE of them supported me.
Neither did my EX.

This was before FEAST and the forum and early in 2000

I have been very vocal to parents who want to send their  child to college prematurely. 

Because I learned this lesson the very hard way.
I see how much my D needed to get accurately and fully weight restored.

I saw how much she needed for  maintaining that weight and being able to REALLY not listen to her ED thoughts, particulary under stessfull situations.

There is no bigger stress than being alone at college and having to navigate the social and academic pressure

My YA D has now been WR for 1 1/2 years and she is now able to not listen to her ED thoughts since they are much less. 

She has been working on the very important coping skills that she lost during the time she was ill.

For many parents whose child developed acute anorexia later in adolescence or young adulthood,

they don't realize that the illness was there FAR LONGER
and that their child is vulnerable to relapse for a very long time.  It's not really 6 months or even a year.

I tell my D everyday that her health is #1 PRIORITY and that what her peers are doing - living long distance from home, continuing on with college, graduate school, etc
is fine for those who have not been ravaged by this illness.

It is not FOREVER, it is a loving thing to do as a parent to support her FULL recovery.

And not to encourage jumping back  into stressful life situations that will threaten her recovery until she is the strongest emotionally and physically and really ED free.

I do see many parents having to learn the lesson the hard way because they are so caught up in wanting their child to have all the entrapments of life

best schools, scholarships, lot of peer interaction and socializing

those are nice but really not what's important in life

My D is brilliant, had many sports and academic accolades, perfect test scores for SAT's and graduate school exams and I am here to tell all of you parents

that they mean nothing to her

I can't say enough for the constant repeating of fear extinction and  exposure - not just for food and eating, but learning how to live life with small stressors and using healthy coping skills

It is the constant repeating of these healthy behaviors that will permanently change the neuroplasticity.

And, it does take time.

Our children are all young and they have their whole lives ahead of them to go to school, work, and develop healthy relationships

To be honest - much of college is about having your independence and there is a lot of drinking on college campuses and other social pressures.

That should be a consideration for all parents whose child has been ill with an eating disorder.



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WenWinning (formerly wenlow) - a Mom who has learned patience, determination, empathy, and inner strength to help her young adult daughter gain full remission after over a decade of illness and clinician set inaccurate weights
gobsmacked_US

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Reply with quote  #11 
This is a really good thread because I think for some people full weight restoration made such a huge difference that they assume that is the one and only answer for everyone, and that can be hard for the rest of us. It's a good reminder to see that everyone's experience is different.

Charlotte, I would like to know where your 2 years started -- with refeeding, with weight restoration, with your noticing she was restricting?

For us -- it's been 15 months since we first started noticing her restricting, and since we ate most of our meals together, we're fairly certain it wasn't going on much before that. It's been just over a year since she started refeeding. 9 months since we considered her weight restored.

My d's descent was quick and we got to her quick. From the time she started restricting to the time we considered her weight restored was just five months. There was certainly a lot of change in her behavior and outlook on life between her lowest point (July 2010) and weight restoration (October 2010), but the change since has been very slow.

Now, nine months after w/r, we haven't seen a lot of change since that point. She still seems deeply entrenched in anorexic thinking.

We pulled her meal plan rug out from under her several months ago and have stepping up the fear food and fear situation challenges and have decided to add a few more pounds, but the going is painfully slow.

We'll have some positive(ish) moments, and then we have a day like yesterday where even the simplest things, like eating a salad with her pizza, are struggles.

I wouldn't even let her go on an overnight class trip on her own now -- college is inconceivable.

Charlotte_UK

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Reply with quote  #12 
Gobsmacked

2 years started with July 1st 2009 when we knew something was wrong.  A year of refeeding (with a few slides along the way).  First post on ATDT in November 2009, heavy refeeding, growth spurts, puberty and more wretched food, plodding on and on to July 2010 - attempts at restriction, water loading, fear foods, high anxiety around food and mealtimes - threw away the scales and stopped weighing.  End of July started to notice ed behaviours easing.  October 2010 let her get own breakfast and stood big sister down on accounting for every mouthful at school.  December 2010 - the biggest ever Christmas lunch with all trimmings and obvious relish and enjoyment.  Boxing Day 2010, no recriminations, no restriction, no depression, no sadness, no regrets about the feast of the day before.  I began to breathe.  Food fine except she likes to eat other people's (?) - she makes the best puddings and does tend to snarfle half of her mothers.....

The turning point for us was the ditching of the scales and the aiming of the state not weight.  Numbers played into the eating disorder.  Ditching the scales meant that we concentrated on other stuff, rather than tiptoeing around the weight.  Did hold my breath for six months though, Gobsmacked.........xx

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SeminarLady

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Reply with quote  #13 
My daughter has been on the recovery track for about 1 year/7 months and fully weight restored for 13 months.

Though she is doing well now - she has maintained her weight, makes some of her own meals and eats independently pretty well, has worked at the same job for one year, is managing her stress fairly well, her ED behaviors are under wrap now - there is no way that she would be ready to take on the stresses of going off to college for graduate school.

And fortunately, even she knows that going away to graduate school or even taking on that stress going to a local college, would be too much for her right now.

I know that each person is different, but if I were to ball park it, I would say that one should be at least 1.5-2 years into recovery with full weight restoration and being able to eat independently with minimal ED behaviors - and be willing to work with an outpatient team and agree to a contract - before contemplating going away from home for college.

Young people have their whole lives ahead of them.

Hugs!

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Red

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Reply with quote  #14 
I like my feet.
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Charlotte_UK

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Reply with quote  #15 
Sigh.  
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Nevergiveup

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Reply with quote  #16 
Charlotte,
Funny how something like this gets posted, when for weeks I have been thinking about this similar topic. So glad you brought it up. 
Our story of recovery is now on three years.  It is a marathon and we have been with our d every step of the way.  I need to keep reminding myself that it has no timeline and everyone's story is different.  I so much want her to be recovered, so the worry can leave.  I have learned to not react to her anxieties and now am letting  her learn how to care for herself with me watching and not letting the bottom fall out.  I so want to move on, but keep on going.  Expectations are what they are.  I have truly been able to understand unconditional love.
We have done every treatment available, added weight when reasonable, exposure therapy, DBT, CBT, talk therapy,  etc. 
Bottom line, she is alive and growing in maturity at her pace!  We are close as a family and have survived some pretty rough times in the past 8 years.  My d and I can talk freely about her ed and can now plan together how to keep her on track.  D will be a really neat adult!! 

melstevUK

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Reply with quote  #17 
This is a really thought-provoking thread.  We are in a strange place with d not being weight restored but very well in herself and eating regularly to stay safe.  She has a very full life outside ed and knows that she must not skip meals or snacks because these are her life line.
We have been let down by the professionals who have not supported weight gain actively enough - the latest dietitian gave up on her - and I have been working on my own, dolphin-style, to nudge her along the recovery path.  She was 15 when first diagnosed with RAN and is now 19 and there is no doubt that she has the insight into her illness to be able to manage it and appear to her friends as a 'normal' person who they perceive as a picky eater and who is on the thin side.
I don't yet know how I can get more weight on, doing this on my own, but I do know that d's desire for a life like her friends has been a big motivator for her recovery.  I know we will get there in the end, but I still don't know what it will look like.  I just know that we will get there. 


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IdgieThreadgood7USA

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Reply with quote  #18 
This thread is sounding more and more about hope and the power of loving caring parents. Re feeding and full weight restoration and or/normalized meals must be step one. There is no question. The scientific literature and research continue to support this. The next step is much tougher because it traditionally takes much longer and requires a strong conviction to maintain the plan without seeing the positive outcome. There is so much temptation to believe that it may be ok or that it's as good as its going to get. But staying the course, however long your loved one needs to fully recover is the best way to see the rewards of full recovery. A healthy mind, free of Ed thoughts and behaviors is realistic goal and it can and has been achieved.
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Red

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Reply with quote  #19 
Lisa, that's a great post. Last night I (tried) to explain to d that my aim was to return her to the life she should have and that we need to identify and take little steps to get there. She cried of course and wouldn't talk about it of course but I shall still try to keep nudging her there.
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WeNWinning

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Reply with quote  #20 
I believe that the next revelation in ED treatment is that:

  • full recovery does take a long time.  That getting accurately and fully  weight restored is the beginning.
  • the hard work is changing the neural pathways that will keep them ill and vulnerable to relapse
  • maintaining their normal physiological weight range long term is the goal
  • learning the coping skills for stressors and getting treatment for comorbid conditions is crucial

to end the cycle of relapse.
  • family becoming realistic and supportive of this slow and steady process is also crucial

So many of our children are overachievers which is part of the perfectionistic personality they share.

And for us to reinforce that behavior rather than to let them know their accomplishments are not

who they are, what we value in them, is really key to long term remission/recovery

It takes so much changing for us as parents who have gotten caught up in the world view 

that accomplishments are what are most important

I value my daughter for her inner qualities; her kind soul and her creative mind.

She is beginning to value herself for those same qualities



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WenWinning (formerly wenlow) - a Mom who has learned patience, determination, empathy, and inner strength to help her young adult daughter gain full remission after over a decade of illness and clinician set inaccurate weights
1997mom_CAN

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Reply with quote  #21 
What a nice thread, Charlotte. From our experience, I agree with what you've said about w/r and the time frame.

I am remembering a discussion on this forum earlier this year where no one was able to identify resources with detailed information about stage 2. Even Locke and LeGrange's book gives far more information about stage 1. When we were there, my impression was that stages 2 and 3 (handing back control and getting  back to life) could/should be accomplished way faster than it was our experience. And I worried a lot that we'd never get to where we are today.

To share our time line, our d was dx in October 2009 at age 12. In hind sight, early symptoms (healthy eating) began at least 9 months prior. She was w/r in about 3 months, and with w/r she improved noticeably, but not completely. Her exercise compulsions and restlessness disappeared, no more fear foods, she was happy again. Some behaviors we hadn't tackled remained: for example she still ate slowly. Once we tackled these, we still had a child who was incredibly dependant on us to feed her. She couldn't make appropriate decisions and just wasn't comfortable with food.

In the year following w/r we also dealt with keeping up to incredible growth. It was when this growth finally slowed down 9 months later that I started to notice things changing for the better.

It was a year post w/r when my d seemed well again. I think that it was continued exposure to food and life experiences with our vigilance, support and encouragement that did it. 

I've considered my d well for about 8 months now, and continue to see improvements and maturity. I wouldn't go thru this again, but I'm kind of glad that if we had to, it happened when she was young. We have another 4 years to keep an eye on her before we have to decide about college.

Additional note: My d was also a competitive athlete and we were all anxious to return her to her sport as soon as possible. Our family life revolved around this. (Interestingly, once my d's exercise compulsions faded, her extreme desire to return to sports did, too.) My d is still very athletic and enjoys sports, but we are careful about the environment she is in ... elite athletics often means that kids have to give up on other aspects of life to focus on the sport, and we won't go there again. Moderation for us is key.





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emilyshUK

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Reply with quote  #22 
This thread has been one of the most helpful things I've read since this whole ghastly thing started in January of this year. Our D has a long way to go but demonstrates every day how much she wants to be well. She eats what I put in front of her; she actively looks with me for foods that she knows will be good for her, she tries so hard to control the ED voice when she feels it is overwhelming. I pray every night that this time next year she will be well, but in my heart of hearts, I know it will take longer than that. I have never hated anything in my entire life as much as I hate this illness. It's opened up in me a seemingly endless capacity for sadness - just about anything and everything makes me cry. BUT, the only way out is through - day by day, meal by meal. No-one loves her more than me and I refuse to let this beat me and rob her of the life she deserves.
To all the other Mums and carers on here - I salute you - you are all heroes.

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IdgieThreadgood7USA

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Reply with quote  #23 
Well said, Wen!


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uncleroy

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Reply with quote  #24 
Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has.  Margaret Mead.

You all are those citizens. 

 I have been living and breathing these questions for the past month wondering who I can talk to... setting up a consultation with a new practitioner, asking for a second opinion with another Dr.  My D has been weight restored for about a month, maybe two.  Thoughts have not relaxed, behavior has improved some, but she is not recovered.  There has been talk of "chronic" recently which threw me into guilt and despair.  Every time we reach a new place we hope for the miracle and it doesn't come.  The unexpected miracle DID just come and that was reading these posts and realizing that this disease is awful and painful and unfair and cruel and we're alive and we're helping our children and each other and having lots of bad days and we're able to help them through the miracle of our love and with the support of ATDT.  My sincerest gratitude to you all.  I will post what is going on with our D a bit later.  College?  No.  Postponed.
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Reply with quote  #25 
Dearest uncleroy, you have made me cry. I am so very pleased you have come to this place. I was where you are 2 years ago. Be strong and believe that recovery is possible. I know, because I can go and see my D and recovery is right in front of my eyes. 
January 2009 my D's BMI was 12 and she had arrhythmia's, she was irrational, psychotic and deeply AN. I kicked ED out the door and stayed with my hands on my hips and my foot against the door until I knew he wasn't coming back. Occasionally I still go to the door and check that he is not there lurking. No sign. All clear.


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