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hbeatsaUSA

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Reply with quote  #1 
It's been awhile, hasn't it? Here's the rundown of our last few months... 
- D started graduated from college and started medical school! She is an M1 at the same university she attended undergrad and loving it. She graduated in late May and started med school the very next week. Her school integrates clinical experiences from day 1, so she has been able to interact with patients and participate in their care. Crazy that my little girl is doing to be a doctor! Right now, she wants to go into pediatrics or OBGYN. 
- I, unfortunately, was diagnosed with cancer and have moved several states away to participate in a drug study. My husband (d's dad) has fortunately been able to spend most weekends with me. I am receiving excellent care, and, while this has certainly not been fun, my prognosis is very good. 
- D is tolerating the stress of my illness well. She learned about it from a medical standpoint and has become one of my very best advocates. She came to visit on a school break recently and my physicians were impressed with her eloquence and poise, especially for a first year. 
- She sees a PCP regularly for refills on her SSRI and ADHD medications, but she was considering taking a break from the SSRI before I became ill. She's been on antidepressants since she was 12, so this was a really good sign! 
- She's almost entirely financially independent. I insist on her having a debit card on our account to buy food on (I don't want to hear the "I can't afford food" argument), but otherwise she has really matured into an independent adult. Great to see.
- She has really wonderful friends. Her study group is very close and incredibly supportive and I know she is in good hands. 

BUT... 
- She has lost (on her own admission) 13 pounds since Christmas. She had to buy new scrubs to wear in the hospital and is down 3 whole sizes. She's not trying to hide this, though. She said "Mom I'm losing so much weight and I don't know why!" Historically, she (AKA ED) has worked very hard to hide her weight loss from me, so this seems different and more benign.
- I suggested that she might try adding a few hundred extra calories each day so she stops losing (things like adding nuts to her cereal in the mornings, drinking whole milk instead of 2%, etc), she said "I know that should be easy for me, but I'm honestly having a hard time with that idea." 
- She is still at a perfectly fine weight (right on her weight curve) and having a period. She put on 15 or so pounds when she started med school this fall (and was still at a perfectly fine weight), and it seems that she's really just lost that. She looks great. IF I didn't know her history, I would say that she's absolutely perfect right now. 
- She's a vegetarian. We never ate much meat in our household, but (when she has been doing very well) she has repeatedly expressed the belief that vegetarian diets are unsafe for recovering anorexics. I absolutely understand the health benefits of vegetarianism, but her sudden change of heart on this worries me. She eats well, though, at least according to her debit card statements. Eats Mexican with friends once or twice a week and lots of trips to Kroger and Starbucks. 
- She stopped going to therapy because she's "just so happy now." I want to believe that, but it doesn't sit well with me. 

She looks good, though. She doesn't have the dead look in her eyes and she seems happier than I've ever seen her. Part of me wants to write off her weight loss as stress and maturation. She is only 21, after all. When my own mother was diagnosed with cancer, I lost a similar amount of weight just due to the stress of it all. But, I know that's a bit too Pollyanna of me. My spidey senses are tingling. 

We are very lucky that her faculty advisor is actually one of the physicians who treated her as a child. They are very close, and her school actually requires 30 minute student-advisor meetings every single week. I feel confident that he has addressed her weight loss with her and that they have discussed it at length. She really trusts him, so I think she would follow his direction (and I believe that any advice he gives her is wise and evidence-based). 

I feel like I should be doing more to assess the situation and get her help (if she needs it), but I am very tired. I am in so much pain and the geographic barrier is large. I think she has a strong support system. Am I a bad mom if I let the other people in her life handle this? I think she could be relapsing, but I'm not convinced. And, if she is, there's not much I can do from 14 hours away. 

I know I need to set my worries aside and focus on my own recovery, but it makes me feel like such a terrible mother. I fought so hard to keep her alive for years, and now it feels like I'm abandoning her (when she has fought so hard to stand by me). I feel confident that her advisor is handling it if there is a problem, but oh my gosh--this is so hard. 

Any advice? Encouragement? Reassurance? It's hard being so far away from her. 

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D- 21 w long history of RAN (that seems to be in remission, thankfully)
Me- Stephanie
Torie

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Reply with quote  #2 
Hi hbeatsa - So glad to read the positives, and so sorry to hear of your cancer diagnosis.  Ugh.  It's never simple, is it.

You're right that someone else needs to watch out for your d instead of you.  I wonder if you could talk to her advisor about requiring her to eat more / better and / or put on some weight.  Or maybe your h can take over the job of worrying - you really do need to focus on your own recovery right now.

Sorry I can't write more now, but please be sure to stay in touch.  I'll be thinking of you and your d.  xx

-Torie

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

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Reply with quote  #3 
Welcome back, hopefully as you say it is just an update rather than a need to be back. I am sorry to hear that you have been dealing with cancer now. One thing after the other. 

You do mention many positives. One thing I will say is the huge difference that maturity can make to dealing with this. Your D has been well for a while and I think this makes it easier for them to see what life can be like without ED in it. She will be aware of the risk of going down that path again, and I think more likely to heed warnings and concern and follow up on it rather than being the typical younger teen. Unfortunately I do think you have reason to be concern, but it is also OK to leave it to someone else to handle at the moment. You need to get your own strength back and cannot help her if you are not well. 
Sending some cyber hugs to help. (((((())))))

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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.
OneToughMomma

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Reply with quote  #4 
Dear hbeatsa,

Firstly, I'm sorry to hear about your illness.  That's really not fair, and I hope you kick cancer to the curb.

Secondly, let me say I can completely understand the desire or need to step back.  My d has also lost weight and I also have a health concern and we also live many hours' drive apart.  

I think it's okay for us to take a step back and, as my mother says, 'hide and watch'.  My reality is that I can't easily check up on my d.  I have to trust that all the work we did getting her safe and recovered will carry her through.  All of her intelligence and maturity (still developing!) will protect her.  It's just not practical for us to step in right now.

And the reality is, if the worst does happen and my d gets sick, I will muster my energy and the troops and step in.  God, it would be awful.  But we would do it.  As I'm sure you would.  

I think this is the dance that all parents do as their kids grow up.  Let them fly even if they might fall?  Step in with a net?  With us ED warriors, it's just more complicated and more intense, naturally.  Snatching your kid back from the abyss of starvation makes you a little hyper-aware and a bit more enmeshed that average. 

You and your d's dad have to decide what's right for her, of course.  But for me, I'm 'not worrying'.  I'm believing she will be fine.  We are paying for food, just like you.  And we are here for her, and ready to help if necessary.

Sending you a huge hug.

xoOTM

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D in and out of EDNOS since age 8. dx RAN 2013. WR Aug '14. Graduated FBT June 2015 at 18 yrs old. [thumb]
mec

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Reply with quote  #5 
No, no, no! You are NOT selfish. You need to take care of your health. Put your O mask first, always. I had a brain bleed last year and my perspective had changed. I need to take care of me and cannot devote the energy not add stress about my daughter’s issues.
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21 year old daughter who was DX with RAN at 9 years old. The work of recovery is ongoing. 
martican

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Reply with quote  #6 
my heart goes to you for the circumstances. Life is unfair but we still have to deal with it. You know what you need to do, and it sounds absolutely reasonable. As to your feelings being a horrible mother, look at it this way - you are showing your daughter that your wellbeing and health is important to you and is a priority. Your D, being an adult now, has you as a role model and hopefully she will do the same for herself. You are a beautiful, warrior mom xxx
Mamaroo

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Reply with quote  #7 
Hi, So sorry to hear about your cancer diagnosis, wishing you a speedy return to health!
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D became obsessed with exercise at age 9. Started eating 'healthy' at age 9.5. Restricting couple of months later. IP for 2 weeks at age 10. Slowly refed for months on Ensures alone, followed by swap over with food at a snails pace. WR after a year at age 11 in March 2017. She is back to her old happy self and can eat anything put in front of her. Now working on intuitive eating.
hbeatsaUSA

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Reply with quote  #8 
Hi there, 
I am feeling much better after talking with d extensively. OneToughMomma's words really spoke to me a lot. I can't afford to worry about this. I have to trust that she is alright and that we will make a plan if it turns out that she isn't. 

I texted her that I had some concerns about her recent weight loss and asked her if she had talked about it with her advisor. This is how our conversation went: 
D: Yeah of course we talked about it. He has been on my tail about it. 
Me: Does he think you're relapsing? 
D: He used to but he seems to have changed his mind. I mean he made me write down what I was eating for a few days and said it was fine and he saw me eating pizza at the noon lecture today. He told me he isn't really worried and that I can tell you to relax and focus on yourself 
Me: So he had you log your food for a few days? 
D: Just to confirm that I was eating enough. I think I still probably have some issues with knowing what normal portion sizes are. I'm predisposed to eating less than I should I think. I'll work on that 
Me: OK. That all sounds good. How was *name of Indian restaurant* last night? 
D: Really yummy. I got a second order of curry to go and I'm eating it for lunch tomorrow. 

She seems OK. Better than OK, actually. She FaceTimed me a few hours ago while she was talking a study break with a friend. Seemed happy. They were walking to get milkshakes before their histology exam. Has the weekend off before starting a rotation in emergency medicine on Monday. She's excited! 

I feel reassured. This is going to be alright. She is alright. I can relax some. 

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D- 21 w long history of RAN (that seems to be in remission, thankfully)
Me- Stephanie
sk8r31

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Reply with quote  #9 
Hang in there.  So sorry to hear of your own health issues, and hope that you can focus on taking the very best care of yourself.

It is encouraging that your d is open and willing to discuss her issues and challenges with you.  Also great that she has a good advisor who is keeping tabs on the situation.

Glad you can breathe a little easier now....

Sending warm support,
sk8r31

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It is good to not only hope to be successful, but to expect it and accept it--Maya Angelou
hbeatsaUSA

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Reply with quote  #10 
Hi all, 
I'm currently laying on the couch next to d. She is dozing off and it makes me feel so good to have her here with me. We are a multifaith family, so we decided to all convene for Easter/Passover. D only had one day off school, so we are all in her city. It's quite the sight with all four of us in her tiny apartment! It has been three weeks since my last treatment, so I am relatively un-immunocompromised right now. I go back north tomorrow to start another round, but this weekend has been a welcome respite. We have had lots of family movies, card games, and an epic game of monopoly, in between plenty of food, friends, and rest. I feel very blessed. 

D looks thin. She has lost 4 more pounds since my original post, bringing her down 17 pounds since Christmas and Haunnakah. Gulp. I'm still torn. I don't think she eats enough breakfast, but she seems to make up for it with a big snack before bed. She does go running still, but no more than she was before the weight loss began. She looks bony, especially in her chest. There are little things that make me suspicious (she admitted that she eats the same thing for lunch almost every day), but she eats a wider variety of foods overall than I have ever seen her do before. Despite the additional weight loss, I feel more reassured after seeing her with my own two eyes. Just a few minutes ago she finished a large bowl of chips, queso, and salsa. She said "this is my favorite food right now." One of her friends explained that they spend most weekends at the coffee shops studying and eating pastries. Her food spending has actually gone up this month. She started adding the nuts with breakfast like I suggested and says that she knows it's time to get serious about not losing any more weight. She is still a vegetarian, but she isn't really that strict. For example, she ate caesar salad dressing and took a bite of her brother's steak over the weekend. I need to stop worrying and focus on myself, but this is hard! Trying to forget about what she and I went through together is harder than fighting cancer, I think. 

I was able to chat with her and her advisor while I was in town. He explained (with d in the room) that he saw some worrisome things at the beginning of the semester (when I was first diagnosed) but that she seems to be much better now. D said "I don't want you to worry, so I'm OK with you texting *Dr. Advisor* for reassurance when you need it. You need to focus on your own recovery instead of stressing out about me. I don't have time for anorexia... I'm going to be a doctor." Overall, we had a lovely visit-more like old friends than anything else. This doctor and I worked so hard to save d's life, so him participating in her medical training really feels like things coming full circle. 

A few of d's medical school friends joined us for our seder meals and Easter lunch. I wasn't feeling up to cooking, so we ordered takeout, but it was still lovely. Her friends are bright and supportive. They are all on this intense med school journey together and it fills me with joy to see her so happy. There's also a boy who is potentially in the picture, though I'm sure yet. She might still be oblivious to his advances! She says a few of her close friends know about her ED history and admits that they have prodded her to eat more a few times. Overall, they seem like caring kids-I wouldn't mind having them be my physicians one day. 

Regardless, I am leaving in the morning feeling renewed. Her weight is down, but I saw good eating. She has excellent friends. Her advisor (who sees her every single day and told me that he makes a point to check in on her eating) isn't worried (and I would trust him with my life). Part of me wonders... with these kids who have very long ED histories, is there a such thing as "good enough?" The disordered things I see d do are not life limiting. In fact, they wouldn't even be noticeable to someone who wasn't looking. She seems so happy. She eats well. I don't know how to explain the weight loss but neither can she. I don't know that having my daughter be a vegetarian was the outcome I wanted when we started on this ED journey, but I think it's pretty darn good. 

So, here's where I am... I'm concerned, but feeling relaxed because this doesn't "look" like ED to me. It looks like a busy, stressed medical student who is hitting her stride while dealing with a family medical crisis. I can't help but feel like some of my concern is related to my own desire to avoid my fears about my prognosis. I'm trying to look on the bright side. Above all, this weekend I realized that my children are people whom I not only love, but also like. They are really good people. 

Does anyone have book/movie/music suggestions? PReferably something *not* ED related. I have quite a bit of free time on my hands here in the hospital, and when I'm not working on the book I'm writing (much of which revolves around d's ED), I like to disconnect some. I am interested in most anything, but particularly enjoy historical themes. I've made a few friends up here, but I'm 14 hours away from home and can't help but feel a bit lonely. I'm scheduled with a counselor later this week and have tried to get myself plugged into a church. Sigh. It never ends, does it? 

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D- 21 w long history of RAN (that seems to be in remission, thankfully)
Me- Stephanie
OneToughMomma

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Reply with quote  #11 
Dear hbeatsaUSA,

Well, I'm in bed recovering with my d home for the holidays, too!  And I have come to a similar conclusion about my d's health.  I think she is doing well and doesn't seem to be losing weight.

I'm glad your d has reassured you, and you are at peace.  It seems like she has a good support network, and they will let you know if she's in trouble.  

For your entertainment, have you read or watched Outlander?  A wonderful love story in both media.  The books are huge and there are so many of them that you could read for ages.  I've read them all at least twice.  Since I can't comfortably sit on my sofa, I'm reading Kindle books recommended for Outlander fans.  They don't require too much focus, generally.

Fight the good fight.

Sending you big hugs,

xoOTM

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D in and out of EDNOS since age 8. dx RAN 2013. WR Aug '14. Graduated FBT June 2015 at 18 yrs old. [thumb]
tina72

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Reply with quote  #12 
Hi,
I love the books of a spanish author, Carlos Ruiz Zafon.
Start with "The shadow of the wind". They all play in Barcelona in Franco time and are very exciting.
All the best for you!
Tina72

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d off to University now 22 months after diagnose, still doing FBT and relapse prevention 
scaredmom

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Reply with quote  #13 

hi I love those books that tina72 has suggested.

I love spy mysteries and thrillers. There is a series I read by Jo Nesbo, and another by Dan (maybe Daniel Sliva). Very engrossing for many hours.

I am so glad that you are feeling more relieved at this time.
I loved X files in the 90's and they have done a few more in 2017 and 2018 if you like that stuff.

All the best XX[smile]


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Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
hbeatsaUSA

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Reply with quote  #14 
Thank you ALL for the suggestions! They have been keeping me very busy. 
OTM----- Wow! I have been watching Outlander almost non-stop during my tests and infusions! Sitting is also not comfortable for me at the moment. Donut pillows have helped some, but anything that doesn't require much focus is wonderful. 
Tina ----- I am from Spain originally, actually in Barcelona where Zafron is from (though I am now a US citizen). I have GREATLY enjoyed his writing and was even able to order a few of his novels in Spanish. It feels o comforting to read in my first language. Thank you kindly for the suggestion. 
Scared ----- Daniel Silva is one of my all time favorites. I had the opportunity to hear him speak just before my diagnosis. What a talent he has!

D is doing quite well. She saw her PCP last week for medication refills. More weight loss (down 20 pounds now... sigh), but excellent labs, normal periods (finally!), loss is slowing quite a bit, and her advisor has texted me repeatedly with reassurance that she is eating just fine. Hard to accept any kind of weight loss as "normal," but I have been working with my own therapist about letting d manage her own health until (and if) she gives us reason to step in. 

I need to brag, though! D's emergency medicine rotation went supremely well. She and her resident had a pediatric patient come in with fluid depletion and metabolic acidosis (and a known history of ED). D's knowledge on the topic impressed her preceptors so much that they asked her to informally consult on the case. The child is now home and the family is getting their stride with FBT. Pretty amazing to see her giving back. 

I had a little setback after my last infusion treatment, but I'm feeling fairly well right now. I am very far north so we are still experiencing a winter storm, but my "cancer friends" and I have been spending quite a bit of time together. We went out for dinner last night and shared a few laughs about how much our lives had changed since diagnosis. In many ways, this is like our family's jounrye with ED ..... I never expected my daughter to become sick, and it was awful when she did, but the experience showed me a whole new world of wonderful friends (even if I would rather not have them). Cancer is the same way. 

Wishing a happy saturday to everyone. 

xoxo Steph 

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D- 21 w long history of RAN (that seems to be in remission, thankfully)
Me- Stephanie
hbeatsaUSA

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Reply with quote  #15 
Hi, all! 

After a few health setbacks (it never ends, does it?), I'm finally out of the hospital and back to my apartment. My husband is here with me, and we have truly enjoyed the spring weather! I am trying hard to stay positive. Cancer is brutal. 

D is out of class until the first week of July, but she is staying on her campus to work on a research project. We Facetime often. Her weight loss has continued, but at a much slower pace. In the past 6 weeks, she has lost maybe 3 pounds. In total, that's 23 pounds since the holiday break in December. I still struggle with whether or not she is relapsing, but I am really working on not caring as much. She has really wonderful people surrounding her and they are not going to let her get into serious trouble. 

Last month, her period was two weeks late. This really scared her, though I don't think it was because she was worried about pregnancy. I do think she is fairly involved with the boy I mentioned in earlier posts, but she has had an IUD for about a year now. She called me every morning "Mami, I still haven't gotten my period. I don't know what to do." I suggested she take a pregnancy test if necessary, talk to her doctor about it, cut down on her running, increase her fat intake, and plan on taking a break from her ADHD stimulant medications on her school break (they undoubtedly affect her appetite, though she adamantly denies this). In response, she cut her weekly mileage in half, doubled her bedtime snack, and even changed to a short acting ADHD medicine that only affects her for 4-5 hours. This means she can eat breakfast, take her meds, go to class, eat lunch as the morning dose wears off, take a second dose, go to class, eat dinner as it wears off, take another dose with dinner, and study. She says it doesn't help her attention quite as well, but she's overall pleased with it. I may make a second topic about this just to give the heads up to other families who had ADHD/ED double dippers! 

Anyway, we are surviving. I am feeling stronger. D made it through finals OK. My husband and son are endlessly caring. Things don't have to be perfect for me to feel very content. Thank you all for the love and support. 

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D- 21 w long history of RAN (that seems to be in remission, thankfully)
Me- Stephanie
sk8r31

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Reply with quote  #16 
So glad you are feeling stronger!  It has been a rocky road lately and sounds like you are weathering the challenges as best as possible.

Sounds good that you are supporting d to find her own ways to problem solve eating, meds, stressful med school rotations, & research.  And so great that she has others to mentor her and help with these challenges.

My d is beginning med school this summer.  She is in strong recovery, but that doesn't mean we won't keep an eagle eye out for anything concerning.  Transitions can be a tricky time, and we will be around as a safety net if needed.

All the best to you, your d & your family.  Truly hope your health will continue to improve.

Sending warm support,
sk8r31

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It is good to not only hope to be successful, but to expect it and accept it--Maya Angelou
hbeatsaUSA

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Reply with quote  #17 
It's been a hard few weeks. My cancer has spread to my heart, leading to another operation and another round of radiation. The same day we learned about my new mets, my best friend up here passed away. My husband has been staying with me, which is lovely, but I am hurting. My prognosis remains good, but this is a long and hard road. My son came up to visit last month, and I suppose he thought I was looking quite rough because he called d and told her that she should come for a long weekend. 

Her weight has kept dropping, but I feel like she is handling it well for the first time ever. Around July 4, she hit 30lbs down from the winter break. Her advisor and friends were telling her that she really needed to stop losing, but she (of course) wasn't looking. After the holiday, however, she returned to class and noticed that she was feeling "really dizzy and tired" and actually admitted that she had been "restricting a little bit" (though she claims that just started this summer)... Since then, she had gained about 6lbs and is feeling much better overall, though she often comments that she feels"fat" or "uncomfortable." 

She's eating, though! And she's doing it on her own! This is a text message she sent me: "U taught me that food is the only way to make this better. And I have to eat even though I want to keep losing weight. I hate it but I feel really dizzy and tired anytime I stand up and I rationally know that I'm too thin now." Wow! Wow!!! WOW!!!!! She has taken a few weeks off from running, significantly increased her eating, and even talked to her roommates (who are her best friends) about making sure that she eats a reasonable breakfast before going to school each morning. 

She is loving her pharmacology course so far, but is really most looking forward to an OB/GYN rotation starting Monday. Her very best friend is on this rotation with her, and I'm truly hopeful that it will be a good reminder for d to keep eating. She can't be a doctor and deliver babies if she is ill. She owes her patients more that that, and I think that the next few weeks will help her recognize that again. 

I was talking to my own counselor about all of this last week and she said "All those years you slogged on and refed d despite her protests, you were teaching her that food is medicine. Because of your persistence, she is now able to care for herself and stop her anorexia from taking over again." I don't know how true it really is, but I like the idea that I planted this seed of self-sufficiency in d. Fighting anorexia alongside her was miserable, but I feel so proud to see her as a grown woman who is taking care of herself. Of course I wish her ED was completely gone, but at least she has learned that she is capable of turning things around on her own. 

For those who are still struggling with every bite of food, remember that your efforts will benefit your children for the rest of their lives. You are teaching them that food is medicine! 

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D- 21 w long history of RAN (that seems to be in remission, thankfully)
Me- Stephanie
Foodsupport_AUS

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Reply with quote  #18 
It does sound as though despite her issues at the moment she has picked up that the only way through this is to keep eating. 

Thinking of you too, sending you warm support. 

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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.
Kali

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Reply with quote  #19 
Dear hbeatsausa,

Sending a virtual hug your way...you are a brave mom who has taught your daughter how to take care of herself and it is your turn now to care for yourself as you and your medical team work on kicking cancer to the curb.

Warmly,

Kali

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scaredmom

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Reply with quote  #20 

I wish you the speediest and easiest treatment and recovery. You have done such a great job with your D. You helped her see that food is the only way!

All the best
XXX


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Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
Mamaroo

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Reply with quote  #21 
I'm very happy to hear that you d was able to gain the 6 lbs all by her self and you've done a great job teaching her that food is medicine! I'm sorry to hear about your health and wishing you a speedy recovery. 
__________________
D became obsessed with exercise at age 9. Started eating 'healthy' at age 9.5. Restricting couple of months later. IP for 2 weeks at age 10. Slowly refed for months on Ensures alone, followed by swap over with food at a snails pace. WR after a year at age 11 in March 2017. She is back to her old happy self and can eat anything put in front of her. Now working on intuitive eating.
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