| lydia |
| | Dec 17, 2006 at 01:10 AM | Reply with quote | #1 |
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| our daughter has been struggling for 5 years with anorexia. she's had 2 inpatient stays, at menninger in texas and mirasol in arizona. But she's stuck at a dangerously low weight. We have an appointment in chicago on tuesday with folks at university of chicago. but it would help to know any tips on how to adapt this model for young adults |
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| Jane |
| | Dec 17, 2006 at 09:03 AM | Reply with quote | #2 |
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I'm so sorry to hear that your daughter and your family have been through so much. You might want to do a board search (There's a blue search button on the upper right) for posts by "dooger". She helped her 18 year old daughter recover using Maudsley. Nancy Zucker's Off the CUFF manual is one of the few books that talks about parents helping older children.
http://eatingdisorders.mc.duke.edu/parent_training.htm#cuff
Jane
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| valerie |
| | Dec 17, 2006 at 04:22 PM | Reply with quote | #3 |
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Hello Lydia:
Yes, we tried this approach with our d who was 21 at the time. She was on a wait list and the hosp team recommended the Maudsely for her while she waited. She managed to gain a few pounds instead of losing more. It was absolute torture though, and as soon as her spot in IP came up, she gave up and stopped eating and her weight plumeted.
I do wish that she was younger, we would absolutely do Maudsley, and she would definitely be at her healthy weight. That was our experience, is your d willing to do the Maudsley? |
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| lydia |
| | Dec 17, 2006 at 05:26 PM | Reply with quote | #4 |
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Valerie, it's hard to tell. Her disease is doing a lot of manuvering. One moment saying to us she wants to have a full recovery, next moment...how stressed she is about having to get into all of "this" again. Right now challenge is different perceptions between her dad and I. I think we need to figure out a way to create consequences for not allowing us to take control of her diet away from ED, her dad seems anxious about her boundaries...intrusive approach would insult her autonomy. I feel like I have an easier time distinguishing between my daughter and her disease than he does, even though he uses the right language... I'm hoping the Chicago folks can help us work through the semantic stuff, so we can figure out a way to implement...that she'll feel she needs to commit to. He's uncomfortable with the "consequences" aspect...I just don't know what is viable.
Does anyone have advice or experience here? |
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| lwm |
| | Dec 17, 2006 at 05:35 PM | Reply with quote | #5 |
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Lydia,
My h and I found it easier to implement Maudsley, and to discuss "consequences," when we realized, and articulated to ourselves, what the real choices were. We could worry about our d's autonomy, choices, etc., or we could let her starve to death.
Our choice at that point was clear.
If your d had cancer and had a delusion that chemotherapy would be harmful to her, how would you handle that? Would you do everything you could to get her the treatment she needed? That's the question we asked ourselves, and it really helped us get our priorities straight.
--lwm
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| lydia |
| | Dec 17, 2006 at 05:53 PM | Reply with quote | #6 |
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lwm,
the cancer analogy absolutely rings true. In fact I keep raising it to my husband, but he seems to think I'm having problems respecting her boundaries/autonomy.
He's fearful that she might run away, or worse...
I worry that not taking a strong stance...and creating consequences for non-compliance with re-feeding will actually kill her. But I don't know how to do this in a way that has worked with a young adult. "dooger" says she did this with an 18 year old, but it would help to know if anyone has done this with a d who's young adult and has been living in this nightmare for over 4 years.
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| Laura |
| | Dec 17, 2006 at 06:08 PM | Reply with quote | #7 |
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I think making that leap - which you have done - to seeing the patient as controlled BY the illness, is important for anyone dealing with this disease at any age. It is also really hard to make. This analogy might work for your husband, when he's ready. Think of low nutrition as a drug. Not eating dinner is the equivalent of a hit of crack. Eating less than enough at dinner is the same as taking a toke of marijuana at the table. What boundaries would he put around that in his home? Surely he wouldn't worry about her autonomy if she was shooting up? Slow starvation may not look like violence but it is wreaking just that on her body and brain, every day. For my husband what it took was stark: You are dying. every day that you don't regain what you have lost, your life expectancy goes down, and your chances of recovery AND REAL AUTONOMY decrease. Running away is bad. Dying at home is worse. And if she is to survive this wretched disease does he want your home to be the place she got worse, or the one place where she is safe? |
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| Jane |
| | Dec 17, 2006 at 06:16 PM | Reply with quote | #8 |
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From Harriet Brown's recent NYT magazine article:
Quote: I asked Le Grange what he thought about a critique of Maudsley: that it violates the usual boundaries between child and parent, derailing the adolescent work of separation and individuation. "If your child has diabetes and doesn't check her blood sugar often enough, you'd make sure she did," Le Grange reassured me. "What we're trying to achieve is taking anorexia away so the child can go on her way unencumbered by the eating disorder. What could be more respectful of adolescent development?"
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| SHawn |
| | Dec 18, 2006 at 11:17 AM | Reply with quote | #9 |
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Dear Lydia,
Just wanted to wish you luck. You are in very good hands at the University of Chicago. My daughter has been treated by their team since August of this year. She has made real progress. We were NOT randomized into the Maudsley approach of their study, but learned to very quickly follow our instincts as parents and tried to adopt much of the Maudsley principles in refeeding our girl. So I guess what I'm saying is that we found that we could put together our own treatment program, and be supported by the Chicago people. So I would be hopeful that veering from the classic Maudsley success story (ie. of a younger child) doesn't mean you can't still use the basic principles with your older daughter and make real progress.
If you'd like to talk with somebody else who has gone through the Chicago program feel free to contact us.
Take care,
Shawn |
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| lydia |
| | Dec 18, 2006 at 05:34 PM | Reply with quote | #10 |
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shawn,
hearing from someone who's used Chicago and adapted is very helpful as we start the journey. Also hearing you've made real progress--very encouraging.
I would like to make direct contact with you, but don't know how, so need to be clued in about that.
thanks so much for making contact. |
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| Shawn |
| | Dec 19, 2006 at 12:31 PM | Reply with quote | #11 |
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Lydia,
Hit my name on this message(column on left) and that will send me an e-mail. Once you e-mail me I'd be happpy to also send you my phone number, if you wish. We live in Madison, Wisconsin. I'm so curious to know how your visit to the U Chicago goes today. My daughter and I were just talking yesterday about her first visit in September. It was horrible---we had to physically drag her there, ahd she refused to talk or look at the therapists. She is much, much better now---and even plans to bake some cookies to give her therapist when we visit this Thursday! Only a month or two ago I was posting desperately to this forum. We had a rough time, as do many families during refeeding, and I almost gave up. She still has progress to make, but I'd say at this point her eating is almost completely normal, and what she can focus on is learning to confront and deal with her emotions and social/family issues.
I could ask her if she would be interested in e-mailing your daughter for support, but her recovery is still ongoing, so not sure if that would be helpful or not. Also, she is younger than your daughter(she'll be 15 this spring.)
Thinking of you all today in CHicago,
Shawn |
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| lydia |
| | Dec 22, 2006 at 01:19 AM | Reply with quote | #12 |
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thought I should update. it's only been 2 days and already we're seeing amazing changes. i thought d's age would be a problem, but the reverse seems to be happening.
H & I with Dr. Chen approached this as a contract based on mutual trust. d agreed to move back home, and to give us control over her diet. she's also agreed to drop her january class at college, and no exercise.
when we got home tues. pm, we had a normal dinner and she had a big pm. snack.
yesterday and all day today...packing it in. we're already close to 3,000 calories.
we had an appointment w/ her nutritionist today who reassured her that she won't be the goodyear blimp any time soon, and that as we are helping get her digestive tract back in good working order (goodbye metamucil) and she's refeeding, her metabilism will actually speed up. d was incredibly reassured by this validation of what h & I have been telling her.
i'm stunned, her sense of humor coming back, we've had 2 days without measuring portions, obsessing about what she can and can't eat. tonight i took her to the grocery store, to let her pick out her dinner: menu Shrimp, butternut squash ravioli with red sauce & cheese & asparagus. she cleaned her plate, and is chowing down now on her evening snack.
all i can say...why didn't we know about this 4 years ago! |
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| Shawn |
| | Dec 22, 2006 at 11:08 AM | Reply with quote | #13 |
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Dear Lydia,
Thank you for updating all of us and I am thrilled to hear how things are going! Your daughter must have such a sense of relief herself. Good for her. My daughter and I went to Chicago yesterday and the clinic was busier than I have ever seen. I wonder if the holidays are a time when these issues come to a head? We bumped into a family just starting out on this path, and I had to hold back tears when my daughter volunteered to give the family her e-mail in case the daughter wanted to talk. "It's awful," she said. "But it will get better." My daughter, 14, has gained 30 pounds this fall, and, I hope, a growing understanding of the importance of confronting and dealing with feelings and of reaching out to others.
Please keep us posted!
Shawn |
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| lydia |
| | Dec 22, 2006 at 12:28 PM | Reply with quote | #14 |
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Shawn,
30lbs! wow you have been working hard. and your daughter endorsing maudsley...another wow.
we have 2 other kids (young adults actually) d has twin sister, and older brother, both are relieved to hear of changes, have talked to her, and ready to support us, as best they can, from their chicago homes.
d had another big breakfast, 2 poached eggs, peanut butter nutella on 2 pieces of whole wheat toast, an orange and my personal fave these days--an instant breakfast shake with milk & vanilla ice cream. she got this down in about 40 minutes. her mood has changed dramatically...oh and by the way, yesterday she ordered a Starbucks chai frappachino with whipped cream (600 cals) and used that as her afternoon snack.
i'm finding that giving her some choice in her menu helps her work through the "control" feelings a bit.
with 21 year old, this is a bit of a balancing act...but so far seems to be working well. thanks again for the moral support and good luck on your own journey with your d! |
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| valeirie |
| | Dec 22, 2006 at 02:56 PM | Reply with quote | #15 |
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Lydia:
WOW . How do you get her to eat so much? We are still suffering with disease. Showed d. your last e-mail, and she just said oh well, it's just her first days, and I said that's not fair, how do they do it, and she said WAH, Wah. Now I'm sitting here cryinfg again. I hate this disease. if someone told me before AN that she would be so rude and hateful to me, I never would have believed them
Why can't she just leave home? I've told her I can't take it anymore, and and want the d. with this disease to leave home, she is welcome to come back IF she's ever better (which i just don't have faith in anymore)
Husband has the whole week off next week, and she's just going to ruin it, like she's ruined everything since she got this disease.
Do you have any tips, I'm at my witts end here.
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| valerie |
| | Dec 22, 2006 at 02:57 PM | Reply with quote | #16 |
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Oh and i forgot, did she do the screaming, fighting, self harming behaviours before or after meals? because 40 mins is very good for all that food.
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| lwm |
| | Dec 22, 2006 at 03:08 PM | Reply with quote | #17 |
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Quote: Originally Posted by valeirie
Lydia:
WOW . How do you get her to eat so much? We are still suffering with disease. Showed d. your last e-mail, and she just said oh well, it's just her first days, and I said that's not fair, how do they do it, and she said WAH, Wah. Now I'm sitting here cryinfg again. I hate this disease. if someone told me before AN that she would be so rude and hateful to me, I never would have believed them
Why can't she just leave home? I've told her I can't take it anymore, and and want the d. with this disease to leave home, she is welcome to come back IF she's ever better (which i just don't have faith in anymore)
Husband has the whole week off next week, and she's just going to ruin it, like she's ruined everything since she got this disease.
Do you have any tips, I'm at my witts end here.
Dear valerie,
While I empathize with your distress and pain and sorrow, I think you are doing your d a disservice here.
If you feel that your life is being ruined, imagine what's happening to hers.
Then try to remember that it's not "her" but the disease. Somewhere in there, your d is screaming for help, terrified. She's dying.
There is nothing harder than gathering the strength and force of will to do what it takes to help her. There is nothing more important--certainly in her life, and to your relationship with her.
I don't mean this harshly at all; I do understand that you are exhausted and frustrated and overwhelmed. All understandable.
But your d needs you. And your husband.
Let us help you figure out a good next step.
--lwm
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| Jane |
| | Dec 22, 2006 at 03:25 PM | Reply with quote | #18 |
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Dear Lydia,
I'm so glad to hear that things are off to a good start. I think you're right that it's a delicate balancing act. It'll be a long road, and you may have some bumps along with way, but you've made a great beginning. I'm glad you've found good support. Wishing you all the best,
Jane
PS--I'm adding Nutella to my shopping list for next week. I love it and haven't had it in a while.
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| valerie |
| | Dec 22, 2006 at 04:15 PM | Reply with quote | #19 |
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Dear lwm:
The problem is that I don't believe that d. is screaming for help anymore, I don't believe anything anymore. Like when she says, "don't worry I'll gain this week." but it doesn't happen. We have FULLY supported her for 2 years, been to every single appt, nutritionist,family appts, cardiologists. ... Even those always had to be forced upon her, she would not have seeked the help I don't believe.
I've asked her over and over again, "What do you want from us? There's just nothiung we can do to help her anymore.
Whenever I get a little boost from this board, the AN just comes and kills any little hope that I get.
I'm sorry to be so negative, but I feel like we've just lost her forever........
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| marcella |
| | Dec 22, 2006 at 04:55 PM | Reply with quote | #20 |
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Oh Valerie you sound so tired. I'm sure that the healthy part of your daughter that is still in there is also sick and tired and wanting to get out but it's sooo hard for both of you.
I know that you have health problems of your own that put an additional strain on you which must make things more difficult for you.
We were not able to refeed at home. When our daughter was young enough to be offered Maudsley we as a family could not do it - partly because of additional illnesses within the family. When d relapsed what was on offer was InPatient care. I was very reluctant to accept this having been coached in all the (very real) disadvantages of IP but it was literally a life saver. OUR daughter needed to be re-fed away from the family home. I know that your daugther has already done an IP program, and I also know how difficult (and potentially expensive) it is to get adult patients into treatment but it was what we needed and may be what you need -if so I hope that you can get appropriate help/
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| valerie |
| | Dec 22, 2006 at 04:56 PM | Reply with quote | #21 |
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also, she just told me not to CATASTROPHIZE (hard word, don't know if I spelled it right) about the dying. Why can she not see the harm this has done to her body, and will continue to do if she does not have a full recovery. I don't understand it. She is very smart.
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| valerie |
| | Dec 22, 2006 at 05:03 PM | Reply with quote | #22 |
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Hi Marcella:
That is what we have told her, about her going IP again, but she always says, no I can do this, I'll gain the weight, I"ll do it.
What should we do????
See in IP she hated it so much, I think that sje just gained the weight to get out. Then she declined the OP follow up, said that she was fine and would be fine maintaining the weight on her own. She convinced us that everything would be fine. But about 3 weeks later, she started losing again.
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| lwm |
| | Dec 22, 2006 at 05:18 PM | Reply with quote | #23 |
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Quote: Originally Posted by valerie
See in IP she hated it so much, I think that sje just gained the weight to get out. Then she declined the OP follow up, said that she was fine and would be fine maintaining the weight on her own. She convinced us that everything would be fine. But about 3 weeks later, she started losing again.
Valerie,
Your d cannot choose to get well at this point. She needs you--or someone--to choose it for her.
All the rhetoric around choice, decisions, etc., is garbage. Especially when a sufferer has been going through this for years.
This time you will not believe her that "everything will be fine." She needs you. You may not hear it, but she is crying for your help.
It doesn't matter how smart you are. It doesn't matter how much you know intellectually. This is not an intellectual disease. You can't think your way out of anorexia any more than you can think your way out of pneumonia or cancer.
If she had cancer, would you get her the treatment she needed, even if she kicked, screamed, and yelled?
This is no different.
I know you're exhausted and stressed. You can do it. For her sake. For the girl you love, who is locked inside with the demon.
--lwm
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| valerie |
| | Dec 22, 2006 at 05:52 PM | Reply with quote | #24 |
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Hi lwm:
But what is it that I can do now? If i don't talk to her about her food portions,(which is what leads to the arguing) then she will intstantly slide back with her weight. She is already being monitored by a cardiologist. I just don't know what to do anymore. I will go crazy to just sit there and watch her eat less and less. Everyone says the AN thoughts get weaker as their weight goes up, but her An thoughts are still very , very strong, even though she is only 9 pounds away from her low end weight (5"6" ans 22 years of age they say would be 125 pounds)
I want to move out, ( don't WANT to, just want to get away fronm the AN) but don't have anywhere to go, and i don't think that's fair because this is my home, and if i leave, it won't help her, she'll just lose weight like i said. The AN will be sooooo happy that it's greatest anamy is gone.
So I feel like i'm stuck between 2 bad choices that won't help her anyways.
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| Kat |
| | Dec 22, 2006 at 06:25 PM | Reply with quote | #25 |
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Oh Valerie, I can hear the distress in your posts and it makes me mad and sad and scared at this disease all over again! It's ok to get frustrated - but please don't give up hope for your d. When our ds are starved their brains are unable to function properly. This may be why it seems like she isn't asking for help anymore. But she DOES need your help. If refeeding at home isn't working, is it possible to have her committed to a hospital or placed in an IP program? So many parents here have not seen the light until 105% of weight is achieved and maintained for several months. Our daughter is five pounds from her goal weight and many AN thoughts persist. It's taken so long to make any progress because we're dealing with some non-AN related medical problems on top of everything else - so I know that it can get overwhelming. Do you have any family that could watch your AN d while you do something to relax? You're in my thoughts. Kat |
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| Laura |
| | Dec 22, 2006 at 08:44 PM | Reply with quote | #26 |
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This thread has become kind of complicated - Valerie, I hear in your words that you do not separate your daughter's actions and motivations from the disease. I truly believe that is the key to setting your boundaries and marshaling your resources. Your daughter's behavior is completely understandable: she has an eating disorder controlling her, and the world around her is not stopping it. Kind of like asking a drowning person "why are you flailing about like that?" I'm not blaming YOU, but as far as your daughter's ED is concerned, it is winning every day it continues to avoid full recovery. But since Lydia so generously started this thread I suggest we get back to her news? Lydia, thank you for updating us and giving us some further insights into the excellent care you are receiving and your family's work together to fight the illness. You are doing a great job and I applaud you. You've been brave and steadfast for a very long time and having the bravery to start anew with a new approach is really fierce and heroic. Please keep us posted - your experience will help others. And please let us help and encourage you along the way! Laura |
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| lydia |
| | Dec 26, 2006 at 02:04 PM | Reply with quote | #27 |
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hi everyone, sorry so long getting back.
we're on a family vacation and still amazed by how well this is going. the flight was problematic. d has always had problems w/ motion sickness, so it was hard to tell whether we were dealing w/ ed or the previous issue. we muddled through...some tears. on the road family stopped for a fast food dinner and d decided to have a cheeseburger & triplethick milkshake...we almost fell over.
valerie, i can really hear how hard this struggle is for you...i can't say how right on the other posts responding to you are, separating ed from her is so important for your own peace of mind. because ed has had her in it's grip for so long, she feels she has little or no choice but to cave in to it's demands. one of the real challenges is maintaining our own boundaries, and helping our d's to know that we recognize the voice of ed when we hear it. for our d, letting her know that we make that distinction seems to be helping her through this process.
i think Dr. Chen said something that helped to turn the tables...she shared w/ our d her experience with older women with ed. that they have lost all their support systems, family usually burns out by the time women get into their 30's & 40's and that at that stage of life they live a half life...at best. our d had been very skeptical, ed had convinced her that h & I had used google to invent a way to get control of her life & eating. she said that when we sat in Chen's office, after the 2 hour intake interview, she realized that maudsley is the real deal. also the young woman who did the intake interview was very sensitive...unlike many of the intake and ip experiences she's had, where touch, and sensitivity take a back seat to maintaining a "clinical distance".
in any case, Chen seems to have been right on, our d realized she was in trouble, the data says that maudsley is the only approach w/ a proven track record for cures, and d wants more than a half life for herself.
i don't know where you are valerie, if you are getting the support of a maudsley team, but between the books and the help of parents on this site, who've shared refeeding ideas, you've got lots of company...
sorry this has been so long all, hope i'm not being trite or anything. |
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| lydia |
| | Dec 26, 2006 at 08:02 PM | Reply with quote | #28 |
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valerie, there's something else that's very important that really transformed the situation with our d. since your earlier post indicated that you've let your daughter read my post about our d's success, and she seemed skeptical --it might help her to know a bit more.
for years our d has been battling ed. she's had 2 impatient stays, and been through multiple docs and therapist/nutritionist teams. for all these years, we've been approaching this through the traditional thinking...that she had a problem with her mind/personal experiences that had led her to choose anorexia. throughout these exhausting years for her, and terrifying/frustrating years for our whole family, we watched this roller coaster, and felt increasing hopelessness.
our d had been a beautiful, very bright student, with some painful experiences with female bullying,..but for the most part, one of the loveliest young women you could imagine,
when she decided to get in shape in high school, and started running...we were happy for her. there are many other details of course, but in the interest of brevity...she began to vanish in front of our eyes. when the enormity of this hit us, we couldn't believe the web of deception that had been invented to maintain a path that was nothing short of slow suicide. we were utterly overwhelmed.
my husband is a doctor and i'm a retired nurse, as we began to understand the scientific basis of maudsley's approach...it was the first time things added up.
our d had a disorder that has affected her brain function. studies of famine victims, and the minnesota study--showed clearly that starvation victims experience a change in their brain chemistry/normal neural pathways--that result in disordered feelings about satiety, food, and body image. every instance where refeeding was undertaken required outside support, because until normal weight is met and sustained over a significant period, the brain cannot heal itself.
valerie, your daughter is having a problem w/ brain function that is affecting her mind, not the other way around...until her body is healed, she cannot will herself to feel differently about food, weight, body image and the like. for our d's food is literally medicine.
your d's resistence is real, but the hope is real too. our d is still struggling with the feelings, but knowing that she has a physical disorder...and that she isn't crazy, has been transformational. she now really understands that her family and maudsley team are rallying to help her overcome the very real medical problem that has resulted in years of lonliness and pain. again...we're only a week in...but this realization, has helped us break through years of frustration and blind alleys.
you and your d will be in my thoughts and prayers. |
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| Laura |
| | Dec 26, 2006 at 08:31 PM | Reply with quote | #29 |
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Lydia, that was a deeply moving description -and prescription. I wish I could have you talk to the majority of parents out there who are still not told that there is an alternative to the blame/guilt/shame model which tries to talk a sufferer out of their disease when they are unable to make rational choices. |
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| Shawn |
| | Dec 26, 2006 at 08:54 PM | Reply with quote | #30 |
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Lydia,
I agree. I needed to read your post. My daughter's been a bit down this holiday and I've been feeling a little exhausted and exasperated---after all, darn it, we got her weight up, and so why isn't her mood up too?!!! Your words are giving me inspiration.
Take care,
Shawn
PS Your daughter sounds so much like mine, including the bullying... |
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| valerie |
| | Dec 27, 2006 at 03:26 PM | Reply with quote | #31 |
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Dear Lydia:
Thank you so much for taking the time to reply with your note, when you have so much to deal with. I'm so happy that your d is still doing well. Maybe in time, she could send a note through you to me, to pass on to my d about what made gave her the strength to fight this after 5? yrs. of battling. And what made her do the Maudsley.
I DO separate the illness from d. They did teach us that at the hospital. I guess it sounded wrong that day because I was so upset and discouraged, and could hardly see what I was writing for the tears blurring my eyes. (and could hardly think) But when I tell d "fight the AN", or "YOu have to be strong against it" or ask her "what is it telling you know?" She says, "don't say things like that." SHE still feels to blame (well I think the AN stills wants her to feel it's her fault, then it can thrive)
Right now she is very sick with a flu, fever, up all night...... I'm sure she's lost weight already, and I know the AN gets stronger with just 1 meal/snack missed. I'm super worried/freaked out all over again.
Does anyone know someone or a doc, phsych... that would encourage/support Maudsley for adults in the South Ontario, Toronto area (IN Canada)? I Know the recovery rate and staying recovered is highest for Maudsley patients. We are about 2 hrs. away from the Buffalo border, would even be willing to go there, if it would help d.
Thank for listening
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| lydia |
| | Dec 27, 2006 at 04:08 PM | Reply with quote | #32 |
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Valerie,
my d says she would be glad to add a post for your d to read, she's going to use the name "Carrie" for this site, privacy is important to her at this stage.
As to your question about resources near where you live in Canada, wish i could help, but I know there are others on this thread who probably can.
Listening to how your dialogue with your d is going, i've been down that path, thinking i could tell my d to stand up to ed, only seemed to increase her stress levels, and added to the difficulty of events around meals and snacks. i've found that when ed seems to be trying to take over, it makes it less stressful for her if i pause, she now recognizes the meaning of the pause, and i give her space to process. sometimes i'm offering a food choice, that is more controlling than necessary, i remember the goal is nutritionally dense meals and snacks, but within that target, giving my d the opportunity to be involved in the choice seems to weaken the power of ed in these interactions. we've been continually able to find compromises that still achieve our goals, without making my d feel disrespected in the process.
again, this is delicate, we are fairly new to this path, but constantly seeking ways to build trust and mutual respect seems to be going a long way.
hang in there, i know your d really does want her life back, this is a powerful disease, and her struggle to survive is constant...your love and support mean far more to her than she can probably say. don't let ed convince you that you can't be one of her most ardent and loving allies in her battle. |
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| choke |
| | Dec 27, 2006 at 05:00 PM | Reply with quote | #33 |
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Valerie, there is a list of treatment teams that support a family based approach on the main page of the site. |
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| Confused |
| | Dec 28, 2006 at 07:32 AM | Reply with quote | #34 |
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Lydia I'm in a similar situation with my d who is 18 suffered for 6 years around and has been ip a few times at Renfrew ets,cardiac units,so on. She has been in op treatment and is currently. I'm trying to implement some of the ideas I have learned here but also feel my d needs some responsibilty. She has made huge progress since we have been doing most meals and snacks together. Mentally she is a wreck. A few questions for you. It seems you made big jumps day2 on 3000. How is your d doing mentally with this and being involved in life with a job/activities/people? How much weight gain is needed for her? My d is doing her increases but I can see the urges and anxiety is worsening which I know is the case at first. Also I would like my d to be more involved in daily life. How is your d doing with this? Any ideas of what is helping through the fears and motivation. My d wants to be well and sees the problem and the progress I am happy with but feel she is on the edge to start going back instead of forward. I'm glad your d is doing better too. |
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| lydia |
| | Dec 28, 2006 at 02:20 PM | Reply with quote | #35 |
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Dear Confused,
I'm not sure if you have connected to a Maudsley team, or if you're trying to use the methodology on your own. I have to say that we're still early in this, but the changes in our d are amazing. She still expresses some anxiety about total calories, but seems to take reassurance that we'll be doing the weekly BMI at the Chicago Maudsley program, and that we'll be monitoring her progress with their oversight to help guide our refeeding strategy.
For a long time, we approached this thinking that our d could get to a certain weight and then take responsibility to maintain and continue on to her healthy BMI. We were wrong. Maudsley hospital made an incredible breakthrough in our clinical understandings of anorexia. Looking at studies of victims of starvation, it became clear that until a healthy BMI is reached and sustained for about a year, the brain cannot reset itself to experience normalcy when it comes to feelings about food, weight, satiety, etc. So don't be discourgaed if you've made some progress with your d's weight gain, but she's still experiencing anxiety surrounding the increase in caloric intake, or seeing her weight increase. This is to be expected, until she's reached her healthy BMI and maintained for about a year.
One of the more painful aspects of this disease is that the emotional turmoil actually increases with improved physical health. So while she's doing her best to work with you by complying with your refeeding efforts, she is getting more negative internal "noise", ed is telling her this is bad for her. What she needs is reassurance that she can trust you to keep her safe, and that you understand the increasing fears and sadness she may be feeling. She needs to know that if she can hang in there with you, over time the "noise" will diminish, and ultimately be in her past.
Our d is still doing amazingly well. We on a family vacation and she has eaten everything we give her. We usually will offer her a small range of choice, but she has agreed to this process, so when she seems anxious we give her little space to process, but there is no compromise on her caloric/nutritional needs. Her mood is bouyant right now, she's been asking for a lot of her comfort foods from her childhood, like peanut butter banana sandwiches, cream of wheat with fruit, etc.
We're using warm beverages and shakes a lot, and she knows we add carnation instant breakfast to boost her calories and nutrients whenever possible.
I think it has been a huge help for us to read ideas from other parents on this site, because volume can be problematic (our d gets spooked when a large quantity of food is presented) and a lot of parents have posted recipes and little tips they've used, that have been working for us. Whoever first came up with the instant breakfast thing...I could hug you! We add it to cream of wheat, hot cocoa, cold shakes, and I'm sure new ideas will emerge.
We know that as the weight comes on we may see her struggle with things more, but knowing she's not trying to be oppositional, only hearing the inner noise increasing, should help us keep things in perspective as we work through this.
The big thing...our d really wants her life back. She's tired of the demands of ed, the rituals, the crazy exercise and eating regimes, and the isolation that have defined her life for the past 5 years. It seems that she's decided that if trusting us can end this stuggle, then she's going to go for it. I know that she no longer believes the answers are waiting in another IP or endless psychoanalysis. She has drawn a deep sigh of relief...that giving her brain a chance to heal, will finally be the way to have a real life and we're committed to giving her all the love and support we can to see her through this.
In an earlier post on this thread, this was likened to the struggle to see a loved one through cancer...so right on. If our d had cancer, we'd have to help her through chemo, possibly surgeries, and the emotional roller coaster...but no question...we'd be there all the way. The medical model is a paradigm shift, helping her and helping us...to our utter relief!
In a strange way I've come to realize that the intellegence and willpower that were necessary for ed to take her down such a long and terrible road, might possibly be turned around. I'm hopefull that those same traits may help her in the tough times that will surely come. And lots of prayer and patience!
Hang in there, your d is experiencing the normal brain response to refeeding, and her return to daily life is the payoff. But just as diving in to help her get through any other life threatening illness would interrupt her normal development, you'd stay with her through that battle. It will take time.
And try to take care of yourself...hot baths, splurge by having a massage or a glass of wine now and again...anything to help you relax and regroup. I keep reminding myself how long it took to get through diapers and bottles...and then the journey doesn't seem so long.
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| Confused |
| | Dec 30, 2006 at 07:38 AM | Reply with quote | #36 |
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Thank you so much. I try to keep reminding my d that giving up an addiction at first will make her feel worse but in the long run will give her a chance at happiness. My d feels the same way about being sick of the life and demands of the ed but has pushed out all things from her life. I can see how she feels lost. She has few friends,fears work,would like her to go to college eventially or even take a few classes. I tell her she can get these things back but she seems to fear everything. I'm so glad your d is doing better. I am really proud too of mine about the steps she is taking with the food/weight so right now I'm not pushing social/job stuff. Does your d work,school,friends so on and how is she dealing with refeeding druing this? Does she have awhile to go to restoration? Thank you too and I agree about taking care of ourselves which I do lack. I hope you do the same for yourself. |
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| lydia |
| | Dec 31, 2006 at 03:54 AM | Reply with quote | #37 |
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Dear Confused,
Today we flew home, and it was a challenging day for our d. she's always struggled with motion sickness, so trying to keep up the calories was difficult.
Our d is 21 and has been a college student over the past 5 years that she's been battling anorexia. She was first diagnosed her freshman year, by the end of that year she needed IP care because she was desperately ill. She was treated at Menninger in Texas, returned several pounds below a healthy BMI, and tried to maintain, but within a few months it was clear that she was loosing ground.
She stayed out of school that fall, returned to a college in our home town for the spring semester, but by the following summer she needed another IP, this time at Mirsasol in Arizona. Within a couple of days of admission there, she had to be transfered to coronary care at the University of Arizona Medical Center, and after a week of monitoring she was readmitted to Mirasol. At that time she was down to 75lbs, and Mirasol was very concerned that she might be too sick for their program.
She missed another fall of school that year, but was able to go back again in the spring, but still underweight.
For the past year and a half she's lived in her own apartment a few blocks fom home, and attended school. Throughout this time she's tried to cope with the help of a therapist, nutritionist and her own doctor.
Several months ago it became clear that she was loosing ground again. Recently my h & I learned about the Maudsley approach and began looking into finding a support team. Thankfully we found a team at the University of Chicago, who were willing to help us adapt the program for a young adult. She agreed to move back into our home, to quit college until we agree that it's safe for her to go back again, and to allow us to have oversight of her refeeding process.
This was very hard for her, she is a 4.0 student, and has recently been making friends at school, something that she's missed for the past 5 years.
I think that finding friendships has helped her motivation, so we're going to do everything we can to help her build on those relationships, despite the fact that she's withdrawing from her academic program for the time being. She was always so outgoing growing up, and I think one of the most difficult things was watching how this disease transformed her...she became more and more withdrawn, as ed took over her life.
Does that answer your questions about school/social life? At this stage, we're focused on nursing her to back to health, we know that when she reaches stage 2, the focus will shift to helping her maintain and recover her independence. I wish it could all happen at once...but like any other life threatening illness, we're prioritizing. I'm trusting that as her health recovers, she'll reclaim her whole life...but until then... it's "one bite at a time." So we'll be hanging in there together.
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| Confused |
| | Dec 31, 2006 at 05:08 AM | Reply with quote | #38 |
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Thank you. That is what I'm doing with my d right now in sorts. We do have similar stories with d's. My d had been ip many times and cardiac hospital stays where she was too sick to go residential. We are working now with a whole team not maudley based but I am using some of the things I have learned here and I feel my d is making big progress. So right now she is gaining weight and eating the mp but of course the mental anxiety is getting worse at the moment. One thing I see different is she is giving the control of what to do in recovery to the professionals and I rather then herself and doing it. I hope as she like your d gets renurished she can go back to life. I do sometimes feel and I want to know your thoughts too in some way if my d uses the ed is a way out of life such as job,school because she is scared. Well thank you and if your d knows you come here tell her how proud she should be for taking time off for health. School will always be there but health is #1. Its the starting to point to the life she wants. Thank you for all your help too. You are really working hard and I feel so knowledgable about this. I appreciate everything I can learn to help my d |
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| lydia |
| | Dec 31, 2006 at 02:43 PM | Reply with quote | #39 |
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Dear Confused,
Looking at the time of our posts, we must both be a couple of nightowls!
Also, considering the progress you've been making...I'm not sure why you call yourself "confused"...you seem to be doing so many things right.
It's great that you recognize that your d's increasing anxiety about her weight gain is ed fighting back, her brain has been 'rewired' by the disease to believe that this is hurting her. She may be fearful about relationships/work/school right now, but ed tells her not to trust these things.
One of the biggest hurdles to overcome as a parent is to come to the place where we realize that our d's are not "using" the anorexia to escape life, but rather they are so overwhelmed, that they feel compelled by dictates of the disease. Ed tells them that they have to retreat into a hidden world, because no one can relate to them, and their fear of food and "fat". We see them as emaciated, they still see themselves as fat and therefore unacceptable.
While they're in the grips of this disease, gaining weight (our primary goal in phase 1) is their worst nightmare, Only after a considerable period...about a year...at a healthy BMI, does this self-loathing/fear begin to dimish. So just as if they were going through chemo-therapy to overcome cancer...we can' t rest on our laurels until the disease is completely erradicated.
To me it's a sign of real trust in you, that she's giving you control of her refeeding....she must really feel your love for her, even if she can't always express it.
I hope knowing that will help you when she seems angry with you, it's just the disease trying to reassert itself.
When my h & I hear the voice of ed, we don' debate it or try to teach her in that moment. We've learned over time that this usually lands with a big thud. In fact it only seems to make the noise in her head louder. Sometimes we just hug her, other times we just move off slightly to give her room to process. By staying on the same page, and reminding her that her frustration or anger won't make us give up on her...she knows that she's safe with us, and can continue to grow in the certainty that ed is a disease...not her friend. |
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| Carrie |
| | Dec 31, 2006 at 02:49 PM | Reply with quote | #40 |
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Hello One and All, this is Lydia's daughter. I am a 21 year old in recovery, and have been working in conjuction with my parents to help me become CURED from this wretched diesease.
I remember Valerie asking my Mum why I decided to jump on the Maudsley train. Well, ultimately my faith & family were the ultimate factors in my decision. I believe in my Higher Power, God very strongly. I can not live a healthy, happy, love-filled life if I am obsessing over which protein bar I should eat and when. I have painstakingly done everything I could to keep both my disorder and life in some odd, twisted union. But if I keep obsessing, keep restricting, I will die. If I remain in the prison my disorder has made around my spirit than I will become a shadow of my former self and I will die a slow, sad, pathetic death. I do not mean to toot my own horn too loudly, but I am way too cool a chick to let something as vile as an eating disorder to nip me in the butt. With the strength and support of my God in me and my parents, I will get through this and live my life as I was meant to: happy, healthy, and at peace with my spirit and the world.
But why Maudsley? I did the traditional, super-structured IP program where I was accused of clinging to my disorder if I ate the crusts of my sandwich first (and then was denied phone privileges to call my family post-meal). That did not work for me. I also did a stint in a more touchy-feelu, holistic spiritual IP program. While that did help me connect again with my spirit and feelings, waving their hands inches above my stomach to try and spread good vibes around me was just kind of....creepy. I got off track...The point is I have done IP programs, and they did not work. I was not cured, and I believe I can be cured. After meeting Dr. Chen in chicago and hearing from her lips the success of this kind of treatment, I felt God leading me to say "Yes."
Will this work; is this the ultimate treatment for my anorexia? I have to believe that it is. I must trust with all of myself that letting my parents help heal me nutritionally and spiritually is the answer. I have nothing to lose. My life for the psat 5 years has been riddled with guilt, shame, anger, fear, bitterness, resentment, and anxiety. I hated living that way, so I made the choice I was not going to anymore. I have been battling this for years, and I am done battling. I want to try living for a change.
Is this getting long or what? Anyway, my family is a huge deciding factor as well. I just spent a week with them on vacation in Colorado. It was amazing. Since there is no point in obsessing over what and when I eat, I was able to truly enjoy the time spent with everyone. I went out for ice cream with Mark & Sarah (my brother and his wife) which was one of the highlights of the trip. I felt so normal and loved, it was amazing! We cooked amazing meals and I just loved listening to them, hearing them and talking to them without ED filtering it all through veils of BS. For years ED has walled me off from those I love the most. I will not let that go on, that ended the moment I said "Yes." This has to work, I believe God is here, in my heart, and I trust Him.
After a week and a half my fears/obsessions are fading. I still exhibit and engage in some neurotic/sick behaviors but hey, it has even been a full two weeks yet. Life is a journey, etc, ad naseum. I want to enjoy it while I can. Five years is enough. I know this is going to work. Why...FAITH!
(p.s. I am not going to spell check this. If there are mispellings or grammar mistakes, deal with it.)  |
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| Christine |
| | Dec 31, 2006 at 06:19 PM | Reply with quote | #41 |
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Dear Carrie, This is Valerie's daughter. Thank you so much for taking the time to write. You are a very brave and determined young woman! It is encouraging and motivating to me to hear from someone who is committed to recovery and is able to trust her parents and professionals. I too have done the super-structured IP program, which obviously was not successful. I don't want to go back there again. I like how you say "I must trust with all of myself that letting my parents help heal me nutritionally and spiritually is the answer. I have nothing to lose. My life for the psat 5 years has been riddled with guilt, shame, anger, fear, bitterness, resentment, and anxiety. " It is so hard for me to have that trust. How do you find it? I know my mum wants to try Maudsley again. She is so brave and dedicated! I really do want to try Maudsley again as well. In a way it would be a relief to me to not have to worry and obsess over food and everything else. On the other hand I am terrified. It is so so hard for me to give over all control, to submit myself. I don't want to cause my family more stress and worry. I don't want to fight or argue. But I don't know if I can NOT do those things. Since I'm recovering from the flu, I know it is going to incredibly hard to get back on track with my eating. I had gained some weight back on my own (well, with a lot of support from my family and N) but now I know I've lost most of it. I hate the idea of having to go through that all over again. And having to drink a thousand more Ensures. But I just CAN'T make myself eat enough. I really don't know what to do. :'o( Anyways, I am so happy that things are going well for you. Keep it up- you deserve to have a happy wonderful life. Keep us updated on your progress. Love, Christine. X X
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| carrie |
| | Dec 31, 2006 at 10:00 PM | Reply with quote | #42 |
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Christine, you must be proud of the hard work it has taken you to come to where you are in recovery. Everyday we hav suffered is needed to get to where we are today. You want to recover, you want to be happy and free. Imagine a day if you had no ED thought whatsoever. How would it look, what would you do? I envision life so sweet and beautiful....hopefully meeting a friends (maybe a bf) for a fun outing or doing something else lovely. Right now, each and every moment feels better.
If you want to know specifically what helps me, it is asking and consuming foods I loved in my childhood. Whatever foods you remember truly enjoying, try asking for those. BTW, I hate ensure. My mum & dad make delcious shakes with carnation instant b.fast, whole milk, vanilla ice cream (Edy's is my fave) and other add-ins. However, I try to stay out of the kitchen when they are prepping my stuff. Otherwise my ED gets triggered. Do you like starbucks? Their frapacuinnos are good and delicious (regulr or cream-based, stay away from the light ones). I love the chai creme one with whip creme (grande sized, the venti is too bIg). They have good muffins to, I love their banana-bran muffin. The point is, whatever you eat or ask your parents to help you get, make sure it is something you know you will enjoy. You deserve joy and happiness, that is what we were created for.
I trust them because they are my parents. They tell me they would do anything for me, but their actions speak louder than their words. Traveling all over the country, going to therapy, and being as patient with me as possible are true testaments of their love. Not to mention the love I feel when I let them hig or kiss me. You know your mum just wants to help you. I know my ED would like me to fight and reject my parents love, but I will not let that happen. Not anymore. I love them, they love me, and my ED hates me. If I have to choose between my loving parents and a disorder that wants to kill me, I will pick my parents anyday. Besides, my ED never tell me I am pretty or congratulates me for my hard work in school. It only hurts me, tortures me, and imprisons me from the beautiful world I live in. Trusting my parents gets easier everyday, so I suggest try it for a few weeks and ask for your favorite foods. You can always go back to the ED, this is true for all of us who are on the path towards a cure. However, I already know that if life is this sweet during the "hard-part" of maudsley, it will only get better with time.
I hope this helped. Have a Happy New Year Everyone! I know this new years for me will be the best ever in my adult life (come to think of it, I haven't been an "adult" for that long, eh, oh well). Have faith, stay strong, and live in love!
God Bless!
sincerely,
Carrie |
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| confused |
| | Jan 01, 2007 at 01:42 PM | Reply with quote | #43 |
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Lydia and Carrie thank you. So much of what you both say makes so much sense. Carrie you sound like my d that she wants more of a life. You can have it and the only chance for that is to be physically well. You should be proud of yourself. Yes your family is so supportive. Your mom is so helpful to me and I really get comfort from her words. Carrie your doing the work though. Never give up the hope. That is what I tell my d even when there are ruff days hold onto the hope you can do it. I'm feeling more hopeful because my d is starting to sleep more though there is constant anxiety and she goes back forth about wanting to give into the ed. She has stayed strong. I remind her she will just have to go through this whole process again and she has come far. I wish as an outsider all the suffers could see what wondeful and deserving people you are. Take care |
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| Christine |
| | Jan 01, 2007 at 03:49 PM | Reply with quote | #44 |
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Dear Carrie, Thanks again for your reply. Your parents must be so happy to have such a mature and caring daughter. Thanks for sharing what you find helpful. It is lovely to hear from a young adult who is willing to trust in her family. That seems to be discouraged among many ED patients. In IP all of the girls said they would never allow their parents any influence in their food intake, which seems a bit sad to me... It is comforting to know I am not the only one who is still under the care of her family.
Having lost a significant amount of hard-won weight this week (due to the flu) my parents are pressuring me to commit to some sort of recovery plan. They feel the best thing would be Maudsley. And I have to agree. So I think I am going to try it. It is so scary and hard to do so but I don't really have any other option. I know my parents love me, they want me healthy and happy and normal. I know how much better life can and will be, when I am not constricted by my own fears, rules and obsessions. I am ready to jump on the recovery bandwagon! Love, Christine X X |
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| lydia |
| | Jan 01, 2007 at 05:44 PM | Reply with quote | #45 |
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Christine,
I'm crying with happiness for you! You go girl!!!
Our d is out with her dad right now, but when she get home, I'll make sure she sees your post. I know she'll be thrilled for you. Please give my best to your mom...I know how much she loves you...trust her...she's truly on your side!
You will be in my prayers...Lydia |
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| carrie |
| | Jan 01, 2007 at 08:02 PM | Reply with quote | #46 |
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Christine, I am so grateful that I am not alone in this struggle. It is not easy. I know we can both do this, have faith! If you ever need to talk, please e-mail me at gryffindorgirl777@yahoo.com I would love to offer you any support and encouragement I can!
God Bless!
luv&hugs,
carrie |
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| valerie |
| | Jan 01, 2007 at 10:02 PM | Reply with quote | #47 |
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Dear Carrie:
Thank you for writitng my daughter and offering encouragement! You're probably also helping others who are sitting on the fence .
Dear Lydia:
Tomorrow we will be drawing up and signing a contract with d. I thought of driving out to Chicago to your doctor for adult Maudsley support, but with my health problems, we could never drive in one day. So I guess that until we find one closer to here, we'll be on our own and with this board.
Is there any advice that you have learned from your doc so far that would be modified to an help an adult?
Thank you form Valerie
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| lydia |
| | Jan 02, 2007 at 04:09 AM | Reply with quote | #48 |
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Hi Valerie,
We were so happy to hear from your d, that's she's willing to give maudsley a chance to work for her, our prayers will be with your whole family.
As to a contract, we didn't put anything in writing...we just gave our word to one another, and Dr. Chen, that we would commit to this process, trusting each other. In the end that's all that would matter anyway.
Dr. Chen told our d that she has a real chance now, for this to work, but that if she allows the ed to continue to control her much longer, this chance will slip away.
The clinical evidence is overwhelming...as patients move into their middle 20's the disordered brain becomes more and more difficult to "reset" (my word) and the chances for a real cure become increasingly elusive.
Dr, Chen talked about her adult patients, that they are typically women in their 30's and 40's who have tragically lonely, marginalized lives. They have lost all their support systems, their parents are often deceased, and siblings burn out. They have few if any friends, and find it almost impossible to hold down any kind of job. Our d really connected to this. She realized that life today with ed is so isolating, with all of us here, but the road ahead will be a very bleak place, unless we can bring healing into her life now.
Beyond that Dr. Chen explained to our d that no one in the world knows or cares more about her needs than her parents. One of the most surprising things to me about our visit was that she didn't hand us a meal plan, set up a caloric regime, or spell out any details beyond doing what we believed was right. She asked our d to move back home so we could have complete control over her menu, and told her she needs to quit all excercise until her BMI reaches a safe level. She asked us all to commit to meeting with her for 13 straight weeks, and then, depending on our d's BMI, to an ongoing, but less intensive schedule for monitoring and therapy.
I would suggest that you ask Laura for her advice about alternatives to having a Maudsley team overseeing your work with your d. I'm in the learning stages of all of this, and it's comforting to know that we'll have Dr. Chen's expertise and experience to draw on in the year ahead. There are some good books available as well, again, I'd defer to Laura for recommendations...my h thinks her book is great!
We sealed our contract with our d with a hug, tears, and hope...our hopes are with your family as well.
Have a wonderful New Year...a new life for Christine awaits!
Lydia
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| lwm |
| | Jan 02, 2007 at 11:54 AM | Reply with quote | #49 |
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Lydia,
Your post brought tears to my eyes. I'm rooting for you and your d and your whole family. You clearly bring so much love and strength to one another that it's inspiring.
My family accomplished the re-feeding and recovery process without a Maudsley team. It can be done. See "Working with a non-Maudsley team" at http://www.maudsleyparents.org for our story, and feel free, anyone, to post specific questions on this forum or to get in touch with me directly off the board.
Happy new year to all.
--lwm |
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| confused |
| | Jan 02, 2007 at 12:02 PM | Reply with quote | #50 |
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Christine and Carrie or others struggling you should be so proud of yourself for fighting so hard. I tell my d that too. The only way to get past the fear is to do it and see nothing "bad" happens. The only bad is the ed. Lydia or others with my d we are trying to get her to make bigger calorie increases. She is gaining weight but has a long way to go.It seems any calorie increase creates so much anxiety. I am wondering Lydia I think you said your d is eating 3000 . Was that right away? Also does that stay through the whole restoration? My d is fearing it too quick the weight. My d is on a contract with her team. I was wondering what type of things you discussed on the contract? |
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