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sunshine1974

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Reply with quote  #1 
I almost feel selfish asking this.  But here is the deal.  I have been with my daughter everyday all day during this 'second chance' at recovery. ( She was diagnosed last Feb., hospitalized, brought home and then started to restrict again and I ignorantly was trying to bargain with 'the bully').  Actually I have been with her everyday since last Feb.  As of now, we face a possible hospital stay again if we can't turn this thing around .  I have learned a lot through this experience and feel like I am finally awake to what is really going on ~ thanks to this site.<3
She has been doing well with eating this week.  Some push back.  And due to her low weight we have been replacing.  I took her door off of her bedroom as she admitted to hiding exercise in her room before each meal.  It has helped taking her door off, and she has told me so.
The thing is this....I have no time to clear my head.  My husband and I like to run together and have not been able to get out to do this because I am with d all of the time.  He needs to exercise as he is diabetic and I need it to help my own anxiety plus I am 20+ lbs overweight.
We were skipping out to grab a coffee yesterday, which would literally take 5 mins.  I told both my daughters to stay on the couch in the living room and that I would be back in 5 mins.  I even have a security camera that faces outside that I turned around so that i could keep an eye on d while gone (she knows this).  
She freaked out when I said that I was leaving and started to panic and say 'you told me that you weren't going to leave me ...'  I assured her that I would be right back and left after 'I love you's'.
Is it unreasonable to want this time right now to run with my hubby?  I honestly ask, should I just accept what is right now and suck it up.  I have racked my brain trying to think of someone who could come over and sit with her for 1hr 30 mins but its summer and there is no one available.
Any advice....?  Insights..?
MegsMom

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Reply with quote  #2 
Sunshine1974:
Number 1 you are not selfish.
Number 2: "Affix your oxygen mask before assisting others"
Number 3: Been there done that (we all have)
Its been years but I recall being in the same position as you.  Exercise was a big piece of my mental and physical routine and I gained 10 or so pounds cooking, eating and caring for my AN Daughter during the horrific months of re-feeding.    I learned the hard way -loss of relationships (including my husband's), weight gain, job demotion, several car accidents (lack of sleep and attention).  This caregiving can take a mighty toll.  The only way you can be your best at it is to take care of yourself first.  I say that and understand the pickle you are in and how very difficult that can be.  I don't know your D's age but if she can nap or watch TV for a distraction you may be able to get a few minutes to yourself.  And it also sound like you may have a few moments of good open communication between you two so that you may be able to explain your own needs to her.  Remember you may have to lower the cognitive understanding in your explanation as I learned my 16 year old understood emotions and other's needs like a 5 year old.  I would suggest small moments at first and work up to a full 30 minutes out.  And trust that your independence will benefit her own autonomy.
It will be better, if not today, next month, next year...one day at a time
 - Megsmom

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sunshine1974

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Reply with quote  #3 
Thank you MegsMom.  My d is going to be 15.  My youngest daughter is 12 (she has also been anorexic and since weight restored).  I hear everything you are saying and it makes complete sense. <3  I NEED to take time for me.
tina72

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Reply with quote  #4 
Hi sunshine1974,
you are NOT SELFISH! You are a hero! But even a hero needs time out. Your d has got used to having you around all the time but that is not normal. In her recovery she now has to learn to get along alone step by step. And you need to have time for yourself and for your husband. This damned illness is killing people and families and marriages if we let her. So make a plan: 5 min for yourself EVERY DAY. Than 10. And so on. I think your target can be to have an hour free time each day. You deserve this!!!
And she needs to get used to be alone again and get some self stability to see that she can manage being alone and do normal things a 15 year old girl would normaly do (which is definitive NOT hanging around with MUM all day [biggrin])
It is important and life saving to get some free time to breathe in and do something for yourself. Go on!
You can be very proud of what you have done up to now! Congratulations!
Tina72
sunshine1974

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Reply with quote  #5 
Thank you Tina72.  That was very encouraging! [smile]  Its funny cause I was almost telling myself 'well this must be how it is and how other people are living so I might as well just suck it up.'  Thanks again.
Sotired

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Reply with quote  #6 
It's really hard to make time not just for yourself ,but also your other children if you have them.i dealt with this in maybe an unusual way-I took my girl to the gym and she sat at reception while I went and did my workout.i needed that time.i spent small amounts of time with my other kids,reading a book with them,watching tv with them,playing cards.things that could be fit in but gave them something of me.
I also had a friend who loves decorating cupcakes and art and she came over for three hours on a Wednesday each week to do art projects with my d.at no point did I ask her to help with refeeding,I just needed a break.i paid for art supplies.if you haven't got a friend who could do that,maybe an art student or a nursing student who can participate in your ds interests (other than exercise of course).
Sometimes(rarely) we accepted the fact that while we were gone she would exercise and went out regardless to spend some time together as a couple.we struggled a lot with this idea,but the two therapists that were involved in our case said it was essential to the wellbeing of our marriage.wecouldnt bring ourselves to go out for long,and we spent most of our time talking about her but still it was nice to get out.
We also,to be fair,had her in hospital a lot and she also went to residential,so that changes things.but the stuff I'm telling you about was when she was home.
Self care and care of your marriage is very important.they don't need the extra guilt of feeling like they ruined your life...and eventually that subject comes up.when it came up for us,we could say with absolute truth that she had not ruined anything,that we accepted the hard times and came through them stronger.

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jaymar

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Reply with quote  #7 
Thanks so much for all the great comments folks. It is clear that you have first hand knowledge of what we are going through. Sunshine is my wife and it's such a fitting nickname because she is all of our sunshine. She gets up and sees me to the door and then turns inside to face the day every day. That in itself is heroic. Thank you for all your good helpful comments. It's good to know we are not all going insane.
martican

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Reply with quote  #8 
Thank you for bringing this topic up, Sunshine! I also struggle with the dilemma. I used to make sure I had my 30 mins of walking or yoga (I had her brother supervise for that bit) when she started gaining but then when I found vomit in her garbage, I felt guilty for all that time even thought it wasn't even associated with my time off, most likely. I was told here, feedback, not failure. But I still couldn't make myself leave her again. What if. Today, she had a a nap after breakfast so I ran to the pharmacy WITH my son but my mind was racing "what if she wakes up and ....", instead of spending quality time with my son, I ended up irritated with the slow traffic, and my mind was filled with what ifs. I also fully realize I am no fun to talk to anymore, don't want to do any fun activities and this ED is bringing me down, even though FBT is going pretty good now again. I realize my status but I don't have any energy to change it. My point is, we have to fit our ME time in between the meals, for pure self-preservation. There is nothing selfish about trying to stay sane and connected.
leahkana64

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Reply with quote  #9 
I really dont think you are selfish at all, I can relate to you becuase I had been taking care of my daughter form the last 10 years fighting anorexia, bulimia,PTSD and bipolar disorder. my life runs arroud hers like we are one in many ways and that is very exhausting. I hope you find somebody that can stay with your D from time to time and you can enjoy ( if that is possible under this crazy circunstances ) free time with your husband or by yourself. honestly I dont even now how to live at this moment, from all her challenges and my owm medical isues, and the endless doctors apointments and the continues vigilance of her, is like I dont know who I am or what I like or need anymore, and my only wish is to have at least 2-3 hours a day without a panic attack or painful state of extreme anxiety. i wish you the best, God bless your family.
tina72

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Reply with quote  #10 
Hi jaymar,
nice to have you here also, its mostly the mums who write and it could be helpful to understand the partners if some more husbands would be writing.
Get her out for some candle light dinner if you can. Maybe there is a relativ or a friend who can stay with your kid for 2 hours.
Don´t mention how the house/flat is looking like or the housework not has been done. To sleep one hour is more important than to clean up. Try to get some help with housework if you can afford.
Give her the possiblity to have a bath when you come home from work. Bring her some flowers. Read a book together in the evening just before sleep. Dream of a journey you will make when you are through this stuff. And you will be through this some time and then you need something which is left for your partnership. ED is eating all your normal life...we are now 7 months in recovery and 1 month with target weight and things are quite normal again (knocking on wood). But its difficult to get used to normal life again. I think its like starting to drive again after a heavy accident.
I wish you all the best! You are not going insane. You seem to have a wonderful family and a beloved wife and that is important, nothing else.
Tina72
tina72

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Reply with quote  #11 
Hi martican,
its so important to speak about these things. We all have been through that and we understand what you feel. You feel guilty every minute of the day. You don´t want to talk to anybody or do something funny. You hate parents with healthy kids playing on the playground. You cannot watch films about children/hospitals/deseases without crying. I sometimes even cried watching the news...
Try to think different: no what ifs. You leave her only for a very little time. It is not good when she vomits then but it is only once and it will not cause a drama. Try to get somebody to stay with her regularly at a fixed time in the week (maybe 2 or 3 times) so you can do something more relaxed in this time. Its like having a baby again: the grandma (or somebody else) needs to take over so you can have a bath. Or go shopping. Or to the hair stylist. Yes, thats important. I haven´t been to the hair stylist for 6 months and it was so good to take this time for myself I nearly cried in the chair...
You have to give 100% during the meal times, but the rest of the day your kids need to do something normal and you need to do something normal. If you have no energy, just try to get a nap. When my d was in school again I used to sleep nearly the whole time to have the power for the next meal. Don´t feel selfish. You need all the help and power you can get. You are her life saver.
Tina72
toothfairy

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Reply with quote  #12 
Hi there,

 I barely left the house for 6 months as well, only to get groceries and attend appointments.

That can only go on for so long, also it is good to show your sick kids that there is life outside this illness.
What we did was H and I take it in turns, that worked for us.

What brought my S along was having school pals up in our house, A LOT, I mean throughout summer every day, for meals, fun,games etc. 
I also drove them to lots of activities,movies,etc...including lunches , dinners etc...It cost a fortune but was much better than any therapy!

We are well into recovery now, but generally speaking there is still always one of us at home at all times.

We also go out as a family for meals regularly, and are back to going on regular holiday's etc together with no hassle or stress apart form the "normal" teen stuff.
You will get there, hang on in there, distraction is key..

Best Wishes



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Son,DX with AN, (purging type) in 2015 ,had 4 months immediate inpatient,then FBT at home since. He is now in strong recovery, (Phase 3 ) and Living life to the full, like a "normal"[biggrin] teen. This is with thanks to ATDT. Hoping to get him into full recovery and remission one day at a time. Getting him to a much higher weight, and with a much higher calorie plan than his clinicians gave him as a target, was instrumental to getting him to the strong recovery that he is in now. Food is the medicine.
mamabear

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Reply with quote  #13 
It is important to find small moments for yourself. Mine was a bath. I read smutty magazines and just soaked.

But I want to warn against something. Since your daughter is battling an exercise compulsion, I personally would recommend not talking to her about your own exercise or desire to exercise. I definitely would not let her know you are going to run etc. My daughter could not handle that as all it did was make her ed even louder that she was lazy etc. To be perfectly honest, I stopped exercising myself for a very long time. I gained 20 pounds just like pretty much every parent here. But it was all worth it in the end.

Yes we need to try to have timeouts. Yes our other kids need time too. But we also need to cut ourselves slack because this is not a normal situation and it does require complete selflessness.

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martican

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Reply with quote  #14 
Tina - thank you for your kind and encouraging words! My gf is coming for a visit and then my mom (they live overseas) so I will make it a point to steal that half hour-hour in a day just for myself. 
tina72

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Reply with quote  #15 
Hi martican,
that sounds great! Try to invite as many relatives as you have! They will feel better by realising how helpful they can be and you need every single help you can get. Try to relax a bit while they are around and save power for the time when you are fighting on your own again. Some people wait for being asked to help. Ask them. It is a win/win situation...[cool]
I´m so glad to give a little bit back to all of you who gave me kind and encouraging words...it is SO IMPORTANT and it is helping to save the day...do you know what saved my day? At lunch my d told me today the steak I gave her was TOO SMALL...[biggrin] I think NOBODY but you girls/guys will understand why I wear that grin in my face today...
Tina72
Torie

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Reply with quote  #16 
Quote:
Originally Posted by toothfairy
Hi there,

 I barely left the house for 6 months as well, only to get groceries and attend appointments.

That can only go on for so long, also it is good to show your sick kids that there is life outside this illness.
What we did was H and I take it in turns, that worked for us.

What brought my S along was having school pals up in our house, A LOT, I mean throughout summer every day, for meals, fun,games etc. 
I also drove them to lots of activities,movies,etc...including lunches , dinners etc...It cost a fortune but was much better than any therapy!

We are well into recovery now, but generally speaking there is still always one of us at home at all times.

We also go out as a family for meals regularly, and are back to going on regular holiday's etc together with no hassle or stress apart form the "normal" teen stuff.
You will get there, hang on in there, distraction is key..

Best Wishes





Same.  The Torie household was just as ToothFairy describes, except that my d never stopped school, which made a huge difference during the school months.

I think your d will be perfectly happy to spend time away from you once she is healthier.  In the meantime, you absolutely do need to take care of yourself, while minimizing the time you leave her home without a parent.  It would be great if you h could spell you frequently so you can get some down time.

I have never really bought into the theory that couples need to go out by themselves from time to time.  Nice, yes, but essential, no in my book.  In the course of human history, I think it has been very common for parents to have little or no opportunity for that.  But everyone does need a chance to recharge.  So maybe you and your h need to do your running separately for the time being.

Just my opinion.  xx

-Torie

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Kali

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Reply with quote  #17 
Hi Sunshine1974,

It is a great idea to try and recharge your batteries by having some time to pull down your oxygen mask. You are not selfish! This is a grueling, difficult, gargantuan, superhuman job you are doing right now. Any moments of peace can help you continue. Simple pleasures helped me. A warm bath, reading a good book, watching a movie on TV, taking a walk with the dog....crying....drinking a frozen mojito. 

I missed what seems like 2 years of my social life—luckily my friends are still here for me since we have known each other forever—but I said no to many invitations and spent, like everyone else, most of my time either working at my job or making food, shopping, cleaning up and sitting with my d. while she ate slowly and I fretted over how many calories I could help her consume in a day and fearing that she could die. For awhile it seemed like my social life was talking to therapists and isolating from people because I didn't think they could understand. I was able to work from home for some of the time and that helped but deadlines still needed to be met. 

Now I am trying to fix some of the damage done by the ED and that also seems like self-care. I woke up one day, my daughter was doing better (!) and I looked around and saw that the house was untidy, the garden was overgrown, my taxes weren't done, and my closet was full of clothes which no longer fit. It was like emerging from a fog. So every day I try to spend a little time reorganizing our outer lives. I think that before anorexia those things used to be called chores and I didn't like them very much, but now it makes me gloriously happy to be able to have time to do them.

The other evening I tried to explain this to someone I was out with. We were watching an outdoor concert, it is summer, it is beautiful, I was with friends, the music was great, I again feel hope...and I said to my friend "I'm spending my summer on self-care. Today I shredded 3 bags of old bills and bank statements. My friend looked at me as though I was an oddball and said: "That's not self-care!" 

But it is for me after anorexia has been in the house!

What I am trying to say to you by telling you this is that sometime in the future you may also again be able to feel true pleasure in the small things of life. 

Of course, I'm finding some things which make me sad while I'm reorganizing. Medical paperwork from d. when she was 13, 5'2" and weighed 88 lbs which clears her to run track, signed by her dr., saying she is healthy. (Really, Dr?) A picture from 2nd grade she drew of our family eating dinner together. 

This is the time when your daughter really needs you and in order to be there for her, you can do some things for yourself to help you to cope. So, anything that you can do for yourself to keep yourself going, you are also doing for her.

Warmly,

Kali




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sunshine1974

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Reply with quote  #18 
Thanks to all who shared their kind words and encouragement.  I know that my daughter needs me.  I also know that this job is a selfless one. I also feel that self care is important.  I have been divorced and remarried.  My first husband, the children's father, is an alcoholic.  During the last 10 years of my deteriorating marriage to him I ignored all self care and it only drove me deeper into depression and self loathing.  So suggesting that I continue running with my now husband is indeed a self preservation thing ~ not intended in a vain or selfish way.   It is an activity once a day for 45 mins that helps me feel sane and grounded and less anxious.  That may not make sense to anyone else.  I am no athlete.  I just want to be the best I can be for my daughter.
Also, coming from a broken marriage I am determined to make this one a huge success!  It is different because I have married an amazing, selfless and supportive man. But I do not underestimate the value of having alone time and making him and our relationship a priority.  
I am striving to find balance amidst chaos I guess. 
💔
Sotired

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Reply with quote  #19 
If running is what you need to do to get your sanity on,then do it.you don't need to justify it to us-that's not the point of a support group.i myself did whatever I needed to do to get through.i went to the gym throughout my ds illness,even withher exercise compulsion as part of our deal.i did it for me,i needed it as part of my self care.
I refused to ignore my other children's needs,particularly as they have special needs of their own.i refused to ignore my marriage-even when my h irritated the ever- loving crap out of me.
In part I did this because that way my d had nothing to feel guilty about-she didn't end my marriage,because I still did things with my other kids there's no resentment between them.i did put her first for around 18 months,but discovered that then we all suffered so I reverted back to setting limits on what anorexia was and wasn't allowed to affect.it was a struggle to do birthday parties,play dates,go to the gym,hang out with friends with anorexia as part of the deal.but I chose to do that and I have no regrets because my marriage survived and my kids relationship with their sister survived.
We all come to the battle with baggage.we do the best we can,find support where we are able and take care of ourselves so that we can take care of others.when the battle is long-and it is for most of us-around 18months in we start having to plan how we ourselves are going to survive this.without a plan,we sink ourselves.then we aren't any good to anyone.
Wishing you strength in the journey,

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mamabear

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Reply with quote  #20 
I need to clarify something from what I posted above.

I am not passing judgement on anyone's desires to run or go to the gym etc. all I am saying is that when my daughter was very ill, specifically that first year, she could not handle me exercising with her knowledge.

Her BRAIN was not in a place where she could be logical about the fact that I did not have an eating disorder and exercise was not a danger for me. If I was to tell her I was exercising, it would just Enrage d her ED to make her feel lazy, weak etc. So if I went to yoga or whatever, I brought my stuff with me and changed before I got home. She didn't need to know what I was doing.

As she became well and her brain started to work, I was able to have those conversations about us all having different needs etc and that moving your body is important for all. And now in recovery she does all sorts of things for fun ( not organized sports and not the gym or running). She roller blades, does yoga, swims etc.

Just my personal experience.

Don't feel guilt about what you need to do to stay sane through this. We all find our way somehow.


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Torie

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Reply with quote  #21 
Quote:
Originally Posted by sunshine1974
So suggesting that I continue running with my now husband is indeed a self preservation thing ~ not intended in a vain or selfish way.   It is an activity once a day for 45 mins that helps me feel sane and grounded and less anxious.  That may not make sense to anyone else.  I am no athlete.  I just want to be the best I can be for my daughter.


It's great that you have clear vision for this.  I hope my comment didn't come off the wrong way before - I think people sometimes feel judged if they don't find a way to spend time alone with spouse on top of everything else - I just meant people shouldn't feel judged about that, either way.  You know what you need, and as we always note, you really do need to make sure your own oxygen mask is operating.  xx

-Torie

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"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
sunshine1974

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Reply with quote  #22 
Thank you for clarifying mamabear and Torie.  I was defensive in my response to your replies.  I apologize.  I am over sensitive right now and my feelings get hurt easily. Ugh. I have yet to truly grasp that this is the life we are living (again).  As I have posted previous my other daughter was diagnosed last year with an eating disorder.  And previous to that when she was a little tot she had kidney disease.  Back then my life revolved around her and her illness and making that sure she got the best treatment possible.  She has been in a full remission now for several years.  I guess I was criticized back then for never being able to 'leave her side'.  No one in my world could understand what it was like to be quarantined for 18 weeks. etc.  I don't regret one thing I did back then to be by her side. Again, sorry ladies.  Sending hugs.  I'll stop rambling now. [wink]
mamabear

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Reply with quote  #23 
If I had a dollar for every time I got defensive on FEAST I could buy you all Haagen Das for 5 years.
Just know that we all are here to support each other. And I will tell you that much wise information, that I got most defensive about, came from people with many many more years of experience into this than me at the time.

I get it!

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mjkz

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Reply with quote  #24 
I'm coming into this discussion late but some of what you may be seeing is the length of time our kids have been sick.  When you have a kid who has been sick for years and multiple hospital admissions, etc. you learn pretty quickly that you have to have a life.  When my daughter was first diagnosed, I did 24/7 care and in fact lost my marriage due to the fact that all I had time for was my daughter.  It is something that my daughter to this day blames herself for too so if I could go back and redo things, I'd put more time into my marriage.

My daughter has struggled for many years and I learned that I could get sick with her or I could have a life and model to her that there was something other than being sick and in the hospital out there to live for.  If time spent with our kids was all that determined recovery, none of our kids would ever be sick again.  You do spent 24/7 at first learning all you can and getting your bearings in how to fight this disease.  It is all you have time for but you can't do that for years on end.  You have to learn and make time for other things. I have a bad back and if I don't do my exercises, I am crippled with pain so I did my exercises throughout my daughter's illness.  I took her to my physical therapy and to the gym with me as Sotired did.   It wasn't a choice I really had no matter what her brain would accept.  I would do it again too because it is what I need to do to keep myself healthy.

So make time for your marriage and other kids and don't feel guilty.  We all give what we have to our kids and it really makes a difference.  You can't help your child if you let yourself get sick too.  If I thought running would have made a difference, I'd have gotten a electric scooter for my daughter and let her ride along with me and hubby [biggrin]
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