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alma78

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Reply with quote  #1 
Our daughter has just be diagnosed with AN and has been referred to a specialist service that deals with ED for teenagers. We have to wait one month and in between time will continue to see our family doctor and make an appointment to see a physiological that the nurse at D's college has recommended.
D has lost 7.5 kg. In just 3 months but with most of the loss occurring in the last three weeks or so. She is so controlling and we have had difficulties helping her. We have felt to helpless and every meal time is so stressful. I have been reading a lot about FBT thanks to this forum and I would like to know if we can start this now, like now, or is this something we have to wait to implement after more professional guidance? As of now, she is very restrictive about what she will eat, and is always trying to fight to make and eat her own meals alone, this we don't let her do.
The only meal that is somewhat acceptively healthy however restrictive in terms of calories is her breakfast , but even that she is trying to control and it is decreasing in quantity day by day.
We hate to see her suffer so much, it is really hard on all of us. Last night she cried so hard, she told me that she didn't think the person she was before was still there, that she thought that she could never be happy again...just so heart-breaking. If anyone out there can just give us some hints/help for th early stage of AN, we would be so thankful. We are trying to be strong but the AN just seems stronger and I has her mum just need to reach out. Thank you. Peace and love to all of you.
Torie

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Reply with quote  #2 
Hi Alma - So sorry you needed to join us here.  You are beginning a long and difficult journey, but we can help you get your d back.  Although it always makes me sad that someone as young as your d needs to suffer like this, I rejoice in knowing that she still has plenty of time under your watchful eye to prepare for living independently at university (or whatever).

The learning curve is very steep, and you will probably want to read, read, read.  Dealing with this illness is also very counter-intuitive so I will try to give you a few tips I wish I had known early on:

Do not talk to your d about calories, weight, size, shape or anything like that.  Others will do that ("professionals," sometimes), and then it will be your job to mitigate the damage.  This illness affects the brain in a way that makes them irrational about food, size, shape, etc., and there is no point in trying to reason with her about those things because, well, rational arguments don't work with irrational brains.  I think everyone here has gotten really good at acknowledging the psychic pain and then changing the subject.  ("I'm really sorry this is so hard; do you like my new socks?" type of thing.)

When she says she will never be happy again, tell her she WILL be happy again.  She will need to hear that message a bajillion times, and she'll probably argue and sob in response, but just keep sounding as confident as you can, even if you have to fake the confidence.

You will want to read read read.  And ToothFairy is really good at posting videos to watch.  Here's my favorite, created by forum member Eva Musby:



Please feel free to ask all the questions you like. xx

-Torie


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tina72

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Reply with quote  #3 
Hi alma 78,
a very warm welcome from Germany and so sorry that you need to join us here.
You found a lifesaving help with this forum and in a few weeks you will learn how to handle that. The beginning is hard and you have to learn a lot by try and error. Every family and every patient is different.
This journey will be a long one and it will be hard and exhausting, so you have to care for yourself. You can help your daughter and you can get her back. Recovery is possible, but you will need a lot of power.
First of all: You need to be a team. Read and learn with hubby and be there for each other. You need to talk to your d with ONE voice.
Second: You can start refeeding NOW. You know what she was eating before and you know how much she should gain at least. 500 g - 1 kg a week should be your goal. You will need some weeks to figure out how. For a start throw away all healthy eating and diet products in your fridge and go shopping without your d. Buy all heavy cream full fat stuff you can get. Serve all the food plated and without container if possible. Try to stay calm and compassionate. Fake it until you make it.

No controlling, no discussing. You are in charge for food from today on and she is requested to eat what you serve. You will see a big blow up about that but it is necessary and if you stay strict it will get easier in the next days.
Get help from family or friends if possible. Try to have someone with you for the meals to take over if you need a break. Eating is not negotiable, however long it takes, 3 meals and 3 snacks have to be eaten. Try to get no snack below 300 calories for the start. Add cream, butter and canola oil to everything possible. The brain needs a lot of fat for recovery.
Watch her like a hawk at least for an hour after meals so that she cannot purge. Take away door keys and the bathroom lock. Be aware that she might try to run away.

She will scream, cry, try to hit you. It is very hard to see that but that is ED who has taken over your nice daughter. She is still behind that and waiting for your help. It is a terrible brain disease but the brain can recover from that. It needs a lot of time and food, food, food.

How old is your d?
To give you some hope, we were where you are now one year ago. My d was 17 and had to gain more than 10 kg. It took 6 months for refeeding and then 4 months to see some change in behaviour. We are still working on fear food and she is still in recovery, but she is back. She is living a normal teenager (or young adults) life and she finishes school now and drives her own car. We did not think this will ever be possible one year ago. So don´t lose hope. Put your big girls pants on and fight that bastard.

Tina72
alma78

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Reply with quote  #4 
Thank you Troie for your message and video link which helped me be calmer and I will try to be more confident at least on the outside in front of my D. I am just so nervous around each mealtime but will try to stand firm while being caring and loving and try to make her sit and finish her meal. She hates meals in the evening and refuses carbs, yet I know she needs a full balanced meal especially on school days where is eats at the canteen. She promises me that she eats well there, but I know this cannot be true. Weekends are better as we are together as a family.
Thank you again for your help and I will surely have many questions xxx
alma78

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Reply with quote  #5 
Quote:
Originally Posted by alma78
Thank you Torie for your message and video link which helped me be calmer and I will try to be more confident at least on the outside in front of my D. I am just so nervous around each mealtime but will try to stand firm while being caring and loving and try to make her sit and finish her meal. She hates meals in the evening and refuses carbs, yet I know she needs a full balanced meal especially on school days where is eats at the canteen. She promises me that she eats well there, but I know this cannot be true. Weekends are better as we are together as a family.
Thank you again for your help and I will surely have many questions xxx
tina72

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Reply with quote  #6 
Can you join her for lunch at school or have someone to watch her and tell you what she has eaten?
Can you take her home for lunch?
Think about taking her out of school for the start.
Tina72
alma78

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Reply with quote  #7 
Hi Tina, thank you for your message and sharing your story about your daughter. My D is 13 and will be 14 at the end of April. I will take control as of tonight. I know it will be hard, but as it already is, And will not get better on its own, we will work together to help her fight her AN.
I asked the doctor if she would be better eating at home at lunch time but she said there was too much conflict around food so she would probably be happier at school.... I know this is wrong and we are going to take this subject up with the school nurse et cetera.
Thanks for the warnings about what to expect, she has been very difficult recently and taking control will make things very difficult but I have to deal with it, well my husband and I and her brothers and sisters too.
I cannot thank you and Torie enough for your messages of hope. Much love to you xxx
tina72

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Reply with quote  #8 
I think the doctor is wrong with that and if possible, take her home for lunch. It will be better for her than you sitting with her in the cafeteria [wink]
We took our d home for lunch for the rest of the last year. After lunch we brought her back to school. No lunch no school. That works.
Life stops until you have eaten.
13/14 is a good time (if you can say this) because you have some authority left  and some time until she is adult.
You will get that. You are not alone, ask whatever you need.
Tina72
alma78

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Reply with quote  #9 
I would feel better if she were at home at lunchtime too and I will fetch her tomorrow. We live fairly close to her college and her lunch breaks are fairly long so we will have time to eat. I will prepare everything in advance.
D just got home from school, she always has cold hands and feet, but today even her lips were blue. She looks terrible. I told her that we would be eating all together for all meals from now on and that we all loved up and we will support her through this period. She got all suspicious and said she would choose her food or she would not eat. I told her no and she is now in her room. Do I leave her till dinner or go and speak to her. I don't dare try a snack today. Thanks x
Torie

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Reply with quote  #10 

Quote:
Originally Posted by alma78
I would feel better if she were at home at lunchtime too and I will fetch her tomorrow. We live fairly close to her college and her lunch breaks are fairly long so we will have time to eat. I will prepare everything in advance.


Excellent!  Good for you to trust your gut instead of your (clueless) doctor.

Quote:
Originally Posted by alma78
D just got home from school, she always has cold hands and feet, but today even her lips were blue. She looks terrible. I told her that we would be eating all together for all meals from now on and that we all loved up and we will support her through this period. She got all suspicious and said she would choose her food or she would not eat. I told her no and she is now in her room. Do I leave her till dinner or go and speak to her. I don't dare try a snack today. Thanks x


That's a tough call.  Most likely she is not going to talk to you and ED will be spiteful and nasty.  At the same time, I wouldn't want to leave her all alone stewing about it.  So maybe think of something to call in from the doorway ("Do you need any supplies for your homework?" or "Have you seen my pink socks?" or "Do you want to help with this crossword puzzle" or whatever would seem somewhat natural in your household.

Meanwhile, gear up for battle and if possible get your h clued in and on board.  Some find it best to seat ED-d in between both parents in an arrangement where she cannot easily escape.  If she does leave the table, grab her plate and follow her.  If she barricades herself in her room, let her know that privacy is a privilege, and if she is too unwell to act as a normal family member, you will need to remove the lock or the entire door. (Only if you are prepared to follow through.)

If she throws the plate, serve her another helping (calmly and matter of factly). Likewise if she sprays Lysol on it. (Yep, someone here had that happen.)  Do not argue or negotiate: "Here's your food, please take a bite."  "I'm your mum and I know exactly what you need" type of thing.

If she hits or kicks let her know (as calmly as possible) that violence is unacceptable, and you will need to call the police if she doesn't stop.  Again, you will need to follow through if she doesn't stop.

Oh, and please ask her to use the restroom before the meal so that she can stay with you for at least an hour afterwards.  I was so grateful someone here gave me that advice because if they start purging, that makes it SO much harder to drag them back to health.

With you in spirit. xx

-Torie


 


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"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
Torie

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Reply with quote  #11 
P.S. I wonder if you could feed your other children before ED-D and then send them off to watch TV or do homework or whatever.  ED is hard on the whole family.  xx

-Torie

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"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
EC_Mom

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Reply with quote  #12 
You are doing so well in learning so quickly about this. It is ALL so counterintuitive and not normal and requires a reframe. Here are some reframing ideas:

1. Your d is not being controlling, although it totally looks and feels like that to you and to her. Her brain has had a malfunction and a nasty voice in her head is controlling her. You are fighting that voice, you are not fighting your d. This is such a crucial reframe: You are requiring her to eat, over the resistance of the ED, not of your d herself. Deep down she wants this rescue, she wants you to be stronger than ED. You need to know this (but I wouldn't say it to her, it's just for your own strength).

2. She needs to eat, no matter what, and it's your job to make that happen, no matter what. I fed my d in her room for months. You can bring snacks and meals to her. I spoon-fed my d for a very long time. I stayed up until midnight feeding her dinner sometimes. You will need a steely, brick-wall resolve to do this.

3. She is suffering horribly from this cruel voice in her head, so you must muster all the compassion and care you can while being resolved about the eating. Distraction is key. TV, cat videos, puppy visits, puzzles, whatever it takes. It won't remove her suffering but it will help reduce it.

Keep asking. Don't listen to doctors or anyone who doesn't make sense. Do listen to the veterans here! I wouldn't have succeeded without the folks on here.

tina72

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Reply with quote  #13 
"I don't dare try a snack today."
Be not afraid of something she is afraid of. Get into a routine. Fixed meal times, fixed snack times. The routine will make it easier after a couple of days.
Be strict: if she won´t eat what you serve, she need to replace it with something like ensure (a high calorie drink). If she throws the plate, take another one and refill it calmly. She must learn that there is no way not to eat.
Try to offer some distraction. We ate nearly all meals in front of TV watching funny family shows. A no-go before ED, but use whatever works.
Try not to speak about food, portion sizes, calories. If she speaks about it, say "mmh" and change the subject.
Try to encourage her to eat herself or feed her if necessary. It might take hours, so be prepared and have some help with your other kids.
Add calories to every meal secretly. Keep her out of the kitchen. Plate finished things in a normal amount. That is what you need to eat now. It is just what you need. I am your mum and I know what you need. Take this potatoe. And now another one. Now one piece of meat. Like feeding a little baby. You have done that 12 years before and you know how to do that.
Tina72
toothfairy

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Reply with quote  #14 
Hi Alma
Welcome, and you are amazing that you are going to get started with FBT,
The quicker you start, the better.
My first piece of advice is add butter and cream ( a lot) to every thing you can, from soup to pasta to curry.

You were right about lunches, the doctor is wrong. This beast of an illness needs to be faced head on, not left alone at school lunch  to get stronger and more entrenched.

Unfortunately , trust is not given when anorexia is in control. Your D is not rational around food, and cannot make good decisions, I would highly doubt any meal that is not supervised by you is eaten. It takes a very long time for trust to be used in this illness.The decision needs to be taken from her ( or her illness|), until she is in strong recovery.
All loopholes need to be closed. If you do not see the food going in , assume its not..  Keep an eye on her for bathroom use after meals.

If her lips have turned blue and hands/feet cold, I would consider a trip to the ER.

Her Heart, Blood Pressure , and vitals need to be checked. This illness is vile.
Has she had a full work up with the proper tests??
What is her current bmi or height/weight?

What has happened me and many others is that once the ED starts to get challenged it gets stronger and nastier until she starts to recover...So be prepared for that..

 Personally I would start getting prepared for ER ....OR your A & E department.
I would give her her dinner and if she refused any of it, I would take her and the dinner in the car to the local childrens hospital.

Here is a copy of the AED medical guidelines, I advise you to print them and read them , mark off the required tests in them and keep them in your handbag, as often doctors are not properly trained in ED
http://www.nyeatingdisorders.org/pdf/AED%20Medical%20Management%20Guide%203rd%20Edition.pdf

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Food is the medicine. Recovery is possible.
tina72

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Reply with quote  #15 

And think about leaving her at home from school tomorrow. The first days are difficult and if you can have 3 over the weekend, that might be easier.
She will see that not eating has consequences and that school is for healthy people.

Toothfairy is right, be aware that she might faint. Have a bag packed if you need to go to ER. Have some family members/friends you can call in the night if necessary to stay with your other children if needed.
Make an appointment with your GP asap to check her up totally (blood, heart, bones).

I send you a big pack of power!
Tina72

Foodsupport_AUS

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Reply with quote  #16 
Hi Alma, welcome.

I agree with the others that it is really important that your D is being assessed for medical instability. It is possible if she continues to lose weight rapidly that she will need to be hospitalised. She almost certainly is not fit to be at school, she is at risk of fainting. 

If you haven't already please download the http://www.feast-ed.org/?page=neuroguide and other brochures from the learning center. There is a lot of assistance for getting started, as is there in these : http://ceed.org.au/sites/default/files/resources/documents/FamilyLedRefeedingRecoveryResourcePartA_Nov_2017.pdf  and http://ceed.org.au/sites/default/files/resources/documents/FamilyLedRefeedingRecoveryResourcePartB_Nov_2017..pdf

The brochures from CEED are designed to be given to parents at diagnosis, to help them get started. 

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D diagnosed restrictive AN June 2010 age 13.5. Weight restored July 2012. Relapse and now clawing our way back. Treatment: multiple hospitalisations and individual and family therapy.
momon

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Reply with quote  #17 
I had a daughter who fell ill at 10 and her doctor completely failed to check for her safety-- checked none of the right things-- and said she was OK and later I found out she should have been hospitalized due to her slow heart rate.  Do NOT trust your doctor to tell you if she is safe unless you get the guidelines that are linked by the people who have responded toy here, you tell the DR what tests to do, and you make sure you hear what the results are and check for yourself that she doesn't need hospitalization. Our doctor, even two months into the illness when told by our daughter's psychologist what tests to do somehow ignored  the results that should have caused daughter to be hospitalized, and even then said she was A-OK. (I didn't know enough to demand to see the results and only found out what they were a few years later when I asked for all her med records.)

Medical check now is most important thing to do. Yes --feed cream and oil-- but get medical check now. And  stop all physical activity. Now. Activity 1) burns calories and 2) stresses her heart and it's already under stress from malnutrition.  So then you have covered first level safety for your daughter.  And then you are on your way to starting recovery and health. Good luck to you and stay in touch!


alma78

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Reply with quote  #18 
Dear Everyone,

First of all I would like to thank you for all the messages with help and guidance given. This forum has given me so much hope and information over a short amount of time, I just am so grateful. Here's an update following my last mail on Thursday of last week, sorry if It is long, but boy this weekend has been very long and painful.
Thursday evening I checked on D, her lips were not blue anymore more and she was calmer. I made her dinner, she refused to come down so I went up. D refused to eat, her AN was strong and I had some horrible things said to me and she did get physical with me, told me she would kill herself many times and she did throw her food in the bin too but I stayed calm somehow. Eventually she said that she would only eat when her father got home (of course he was working late...). We waited. When he got back, her AN tried to manipulate H, but he knew.
She did eat her food in the end, leaving a little bit, so I asked her to finish, she just went crazy, ending up on the floor sobbing and screaming, it was terrifying. We called a night doctor and was told just to let her sleep. We kept her on the sofa for the night so we could keep an eye on her. H slept on the floor and me on the other sofa. Next morning she refused point blank her breakfast, so we said we would take her to the hospital if she didn't eat. She continued to refused so we went. The hospital staff were great. She was weighed, loss of weight again, now 49.6 kilos. Her heart was fine and other tests too. This is the hospital that has the specialist unit for AN/AB and the only one in the whole Parisien region. While waiting to see the specialist doctor we waited in the waiting room, D apologized for all the things she had said, we told her it wasn't her fault. D had around 40 minutes with doctor and then the three of us had time with her. She made it clear to us all that D could no longer make decisions when it came to food and that I was responsible for feeding her normal size plates and she had to eat what I served.
So Friday and all weekend that is what I have been doing. All meals have been taken at the table and with the family. I am going with a two choice approach for now, meaning that there are two meals to choose from and she can just choose between the two. Both are high in calories but he AN will choose the one it thinks has lower calories, but the meals are the same. I spend most of my time thinking how to put the maximum of energy into all her meals, but it is working nearly all the time and she hardly leaves anything on her plate. She is not spilling/tipping her food outside of her plate either, however still spreading it. I told her to really try to keep the food from leaving the plate so when she goes to her friends for a sleepover in two weeks, it would help.
D is trying so hard and my heart is breaking for her, but I will stay strong and read lots about this awful illness and come back to this forum with updates.
Thank you all for your precious help.
Peace and love too all xxx
tina72

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Reply with quote  #19 
Hi alma,
you did a very good job, congratulations!!!
Great that you stayed calm and took her to hospital, so she saw not eating has consequences.
And REALLY great that the hospital said that you are in charge for food and she has to eat what you plate! That seem to be professionals!
Try to keep on going. If you see choosing between two is two much at the moment, just present one meal. It is difficult for her because the AN voice will tell her what to choose and you want her not to listen to that.
It is so great that she ate all that you plated! Try to buy some benecalorie if you can. That is 44 ml with 350 calories or so and you can add it to yoghurt, pudding, sauces, mashed potatoes, smoothies...
You can be so proud of yourself that you stayed calm that night and it is great that hubby and you are fighting together. You will get that!!!
Please keep updating, we all want to know how it is going on.
Send you a big hug!
Tina72
alma78

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Reply with quote  #20 
Thanks Tina, will follow your advice with meals. Also just bought via internet some benecalorie, couldn't find it for sale in France so ordered it directly from the USA.
Tomorrow we have an appointment with a psychologist that specializes in ED in young people, I hope thi s eventually may help in some way my D.
Hugs x
tina72

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Reply with quote  #21 
Salut alma,
just overread that you are in France! So we are neighbours! Sorry that I keep on writing in english but my french is even worser...although France and Denmark were our favourite holiday contries before ED. And our 1st short 3 day trip with ED was to Alsace in last October. I would so like to go to the bretagne again this summer but I don´t know if we dare to do that already.
I couldn´t get it in Germany, too, so I ordered the benecalorie in US, too. It is so ridiculous, Nestles headquarter is in Europe and we cannot buy it here.
If you need help and don´t get in your region, I just want you to know that Eva Musby does skype-sessions and she speaks english and french. Just for plan B or C. I hope the psychologist you see tomorrow is a good one. Ask for FBT; if she does not know it, be careful and if she says something like "it is about control", "you should not play the food-police" or something like that - run.
Tina72

Torie

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Reply with quote  #22 
WOOHOO!!!  So glad to hear your report - yay, you!!!  I'm sure it was an absolute nightmare of a few days, but you faced down the monster and required your d to eat!!! Wow wow wow.

"I told her to really try to keep the food from leaving the plate so when she goes to her friends for a sleepover in two weeks, it would help."

Oh dear.  No way would I let my d eat a meal without parental supervision so soon.  She can eat before she goes and then you can pick her up before breakfast.  Or, she can go and then you can pick her up and have her eat dinner in the car.  Or, you can try to wangle an invitation to join them for dinner.  There are a few ways to skin this cat, and hopefully I'm just jumping to the wrong conclusion and that isn't what you meant anyway.

Keep up the good work.  You rock!!!  xx

-Torie

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"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
sk8r31

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Reply with quote  #23 
You have done amazingly well in a short span of time; huge kudos to you and h!  Sounds like you are supporting one another well, and providing a united front to your d, which is really important as you move through this initial refeeding phase.  Of course, it is important all the way along...but especially as your d now sees she can't 'divide and conquer'.

Wonderful that the physician told your d that she must eat everything you provide and is not to make food choices at this stage.  Having that professional support can be so wonderful...especially if you have, as I do, a d who values the 'professionals' and tends to follow their advice pretty well.

This is hard, hard work and I hope you can draw on whatever family or community support you may have around you.  Other family members who could provide some help doing any other household tasks while you concentrate on shopping & prepping meals for instance.  Or trusted friends with whom you can share a coffee or an adult beverage from time to time, to get a break.

Good self-care is critical to long-term success...make sure you are keeping yourself in the best physical and mental shape you can be.  If you need to visit the doc for your own needs, either physical or emotional, please try to get that help.  Believe me, it is so worth it in the end, as this is a marathon & not a sprint.  You and h are doing hero's work.

Your d may fight tooth and nail and be angry now and potentially for quite some time, but eventually, you will have that lovely young woman back to her loving self.

Sending warm support,
sk8r31

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