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Sotired

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Reply with quote  #101 
Well things are not going a hundred here.d has been not so pleasant to live with since she came home from hospital and made extra work for me by inviting her friend with an eating disorder /anxiety to stay for four days.she has been vomiting up bile every day.she has tried to eat but vomits it back up.the end result of that is that she has now dislodged her NJ tube,which means she will need to be readmitted at least for a day to get her tube replaced.
Maybe this could have been avoided if they had also inserted an NG tube to drain the bile.its so fricken exhausting.
I try to have the energy to be a good mother but this just goes on and on and it sucks.my other kids are doing ok thank god,but I'm shattered.really hoping it doesn't take too long to get the NJ replaced as now d won't be able to get nutrition properly until it does.
I wish we were lucky.

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Sotired42
mjkz

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Reply with quote  #102 
I'm so sorry SoTired.  Not unusual for them to vomit up the NG or NJ tube but so discouraging.  Hopefully they will do a NG and NJ this time for drainage. Do they want her to keep trying to eat?

Just remember your house and your rules so if you don't want a guest for 4 days, tell her she can stay during the day but not at night.  She gets to go home in between.  Thinking of you.
Torie

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Reply with quote  #103 
Oh dang, Sotired, that sucks.  I think about you so much and have been hoping things are going at least a little better for you and your d.  I always appreciate your updates as you are never far from my thoughts.  Hang in there as best you can.  Hugs,

Torie

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

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Reply with quote  #104 
Thinking of you SoTired.  Praying for you, your D and the rest of your family.  I hope some grace, or luck, or a windfall of happiness in some form lands on your doorstep soon.  You deserve heaps of it.


eternalhope

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Reply with quote  #105 
Sotired, my heart goes out to you. I’ll keep praying for you and your D that things get better. God bless you.
daddyg

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Reply with quote  #106 
I don't know what to say, I remember when I first came on this board and so your name "sotired" I said that says it all. 

You are an amazing mom, and my heart goes out to you and your family, this is a vicious, evil disease, and I just want you to imagine the unconditional relentless love your daughter feels from you - it shows to me from all your posts and I believe in all my heart you make an amazing difference in her world - be joyful, and keep on loving her - and no that it all means something - my prayers, love and admiration go out to you. 

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D diagnosed with AN January 2015, attended PHP, IOP, Residential 18 weeks, back to PHP, IOP 26 weeks, at home struggling, with 1 doc 1 therapy visit per week, til Christmas 2016, back in residential treatment now.
Sotired

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Reply with quote  #107 
Well,I only get more tired daddy g!latest news is that the hospital say they can't replace it til the 28th.so have suggesested d drink lots of fluids as she keeps them down and hopefully some mashed potato.
To add to everything else we started having to keep middle ds bike outside because now the kids lounge is my sick ds bedroom-and someone has stolen her bike.she is devastated.i am too.we live in a fenced property with two small yappy dogs,thought that would be enough of a deterrent,but obviously not,
So no a will have to find another $400 to replace the bike as the excess on our insurance means it's not worth putting a claim in.
Right before Xmas too.it was an Xmas gift from last year so I'm gutted.
Everything falls apart too bloody often here.so over it.
Thanks everyone for your kind thoughts.

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Sotired42
HateEDwithApassion

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Reply with quote  #108 
Sotired,

You are amazing. Your strength is unbelievable and your unfailing love is such a gift to your kids. There is a very special place in heaven for you one day for all the love you've poured into your daughter and family. I am so sorry for all you are going through. I wish I could do more than type words of comfort. Praying for you and your family. 

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17 yo D. Diagnosed in July 2013. W/R in Sept. 2013 and has remained so. Roller coaster on and off since, mainly with ED under control but co-morbid depression and other negative coping mechanisms making our life hell. Trusting in God for daily strength and wisdom.
eternalhope

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Reply with quote  #109 
Sotired, I wish there was something I could say that would bring you some comfort. I’m sad too about the bike. What a bummer. Tomorrow will be a new day. Whenever I’m sad, I try to remind myself tomorrow will be a new day. If the weather’s nice, maybe sit outside for a few moments and just take it all in. I always feel better when I look around, try to notice the beauty in things.. trees, grass, sunshine. I don’t mean to sound corny, but maybe take a few moments for yourself. You are an amazing mom.
Sotired

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Reply with quote  #110 
If there's one thing I'm exceptional at these days, it's self care eternal hope.d has her new tube in but it's done in a really bizarre way so I'm not sure what will happen with it.the doctor doing the procedure pierced her septum and has threaded it through both nostrils.it looks and feels very painful for d so I'm actually hoping they redo it before Christmas.
We aren't getting on so well because she keeps picking fights and trying to make me feel guilty if I reprimand her for trying to ruin family outings by making it all about what she can't do, which then upsets her siblings.she got the hard word from me about that yesterday, when she was picking a fight over dumb stuff.said she can come on the family trip only if she learns to control her emotions better as we will be sharing accommodation and spending pretty much 24/7 with each other during that time.she doesn't get to ruin things for the others and it's not going to be all about her needs.
Sometimes they just have to be told.
Anyway she's going up to a friends place for a few days, she even tried a guilt trip about that,but I just reframed it that a little holiday up north would be lovely for her.
(Yes,and me,but I didn't mention that).
I have to be very aware with her at all times because she manipulates situations if given an inch.if she does start getting a bit better it may be good for her to move out for a bit-the truth is we are hitting that point again where we struggle to live together successfully.she turns 20 next July so that might be a thing to look at-but only if her health improves.if it doesn't then I think she will have to stay here and long term I'm not sure if that's a good thing.
I'm not super patient and I struggle with all the needs here.on top of which,one of my dogs is sick and I'm worried about her.
Everything piles on but I'm going to the gym,having outings with friends and getting things done around the house which calms my mind.tomorrow I will garden and just enjoy a little holiday from my biggest stressor.

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Sotired42
eternalhope

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Reply with quote  #111 
Sotired, I’m so happy to hear you’re doing things for yourself. That’s great news. Your spirits sounds lifted. It’s great to hear she is excited about visiting a friend and getting out of the house. I’m sorry about your dog, I’ll add him/her to my prayers too.
mjkz

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Reply with quote  #112 
SoTired, I love your attitude.  It is not her fault nor yours that she is sick.  I had to do the same kind of thing with my daughter and it worked better than anything else I tried.  Glad to hear you are doing self-care and focusing on what counts-not the other family relations that take you down or being guilty.  Guilt has its place and when you learn what that place is, it can be a powerful motivator but out of place it is a ball and chain that will suck you down.  Glad to hear what you posted my friend.
Torie

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Reply with quote  #113 
Sotired, I think it's brilliant the way you are keeping your d's illness from totally ruining everyone else's outings.  On some level, I'm sure your ill d appreciates that, too, because no one likes to ruin someone else's day.

Thanks so much for taking the time to write your updates.  I think of you and your family all the time.  Hang in there.  xx

-Torie

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

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Reply with quote  #114 
My dog died.she was struggling for breath and we ended up putting her to sleep the day after my birthday.on my birthday ds tube came out.someone in smallboys class thought it would be funny to try and poison him by putting lead in his drinkbottle.culprits have been dealt with and many tears have been cried this week-not all of them mine.
Sometimes it all just sucks.d somehow manages to look reasonably healthy but her heart is playing sill buggers.
I miss my little white dog.she was the most loving dog and it doesn't seem fair that she got less than two years with us before she went over the rainbow bridge.
My ds stuff just leaves me numb now.she came in with her tube dangling and I just sai "well,you know what to do.ring and sort it." She did but she is always surprised by my lack of reaction now.
This is disjointed and choppy but that's how I feel.

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Sotired42
scaredmom

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Reply with quote  #115 
I am so so sorry! They are such joys in our lives our pets. I am sure he brought you so much comfort over the two years and he knew how much you loved him. You brought him comfort and compassion in the last moments. You have had a bad bad week. You are hero mom. With all you have been through. You are in my thoughts and prayers. Big hugs .xoxo
catbells

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Reply with quote  #116 
Oh Sotired I am so sorry. My dog has been a godsend since this nightmare started. I often say to my h that I don’t know what I would have done without her to keep me going. I would never have believed a dog could bring so much calm and joy when you feel so ground down by it all. So I understand how bereft you must feel right now. You seem utterly exhausted. Is there any way you can get away for a night or even a day? Somewhere that you can just do some self care? You absolutely need and deserve it Sotired.
I’m thinking of you and your family and hoping you get a break from this nightmare soon xx

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Mum to 17y/o D living in England. RAN since Sept 2015. Refed at home but after getting within 3kg of WR D relapsed July 2016. hospital twice for 2 and then 5 weeks. Now IP since Sept 2016.
eternalhope

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Reply with quote  #117 
Oh Sotired. I’m so sorry. What a terrible week. I’m glad small boy is ok. How awful. Kids can be cruel.
I’m so sorry about your dog. Would you consider getting another? I know it may be a lot right now, but it may bring some distraction and happiness to the house. I’ll continue to keep you in my prayers.
Torie

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Reply with quote  #118 
What?!?  Someone tried to poison smallboy with lead???  OMG I cannot believe the load of garbage life has found to torment you and your family with.  The stuff you have to contend with is just SO over the top.

And the dog, too?  It is so sad to lose our furry friends.  I really miss the one we lost last Christmas - sob.
 
My house was builr in 1950 and has a little bomb shelter built into the hillside.  If I were in your shoes I think I would load it up with adult beverages and hole up there until the waters clear a bit.  Holy cow, this is ridiculous.

I hope they got the tube put back in without major hassle.  

Ugh.  Hang in there, and please remember to keep us posted.  I worry when I don't hear from you. xx

-Torie

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"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
tina72

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Reply with quote  #119 
Hi sotired,
I am so sorry for everything that happened. You had to stand so much and you are so brave and such a loving mum.
I know nothing can cure that pain at the moment.
I just wanted to let you know that there is somebody here in Germany thinking at you.
I send you a huge hug.
Tina72
Mamaroo

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Reply with quote  #120 
Hi Sotired, so sorty to heat about your dog and small boy. So unfair 😣. Our dog also died last year during feeding 😢. AsTina said, know that someone from Aus is thinking of you and keeping you and your family in our prayers.
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D became obsessed with exercise at age 9. Started eating 'healthy' at age 9.5. Restricting couple of months later. IP for 2 weeks at age 10. Slowly refed for a year and WR at age 11 in March 2017. Challenging fear foods and behaviours now.
deenl

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Reply with quote  #121 
Hi Sotired,

I truly don't know what to say. I am sending positive energy and a cyber hug your way.

My mum had a very difficult childhood and middle age wasn't much better. We used to say that she was due a wonderful old age. And actually it is working out pretty well. Her garden, her dog, her camper, friends and family and good health. Hope life starts treating you well waaay before then. Hang in there.

Warmest of wishes,

D

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2015 12yo son restricting but no body image issues, no fat phobia; lost weight IP! Oct 2015 home, stable but no progress. Medical hosp to kick start recovery Feb 2016. Slowly and cautiously gaining weight at home and seeing signs of our real kid.

May 2017 Hovering around WR. Mood great, mostly. Building up hour by hour at school after 18 months at home. Summer 2017 Happy, first trip away in years, tons of variety in food, stepping back into social life. Sept 2017, back to school full time for the first time in 2 years. Happy and relaxed, just usual non ED hassles. 

  • Swedish proverb: Love me when I least deserve it because that's when I need it most.
  • We are what we repeatedly do. Excellence Recovery, then, is not an act but a habit. Aristotle.
  • If the plan doesn't work, change the plan but never the goal. (but don't give up on the plan too soon, maybe it just needs a tweak or a bit more time and determination [wink] )
  • We cannot control the wind but we can direct the sail.
mjkz

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Reply with quote  #122 
I'm so sorry SoTired.   Pets are such an important part of our lives and losing them even after two years is devastating.

Maybe it is a good thing that you are not reacting like you were to your daughter's stuff.  No one can live long at such a high intensity all the time. 
Sotired

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Reply with quote  #123 
Thank you guys for your thoughts and prayers and kind words.ds tube got replaced yesterday and she has put in her own Ng tube with clearance from the doctor she saw that day too.do I think it's wise?i don't know.shes had one a long time so she knows a lot about them now.maybe it will help keep the NJ tube down.
She doesn't listen and always knows best and consequently has always been difficult to help.
I'm sad over losing one of my dogs but I console myself that while she was with us she had the best two years of her life.she was nearly 11.i will adopt again and in truth,probably soon in the new year as I enjoy having two dogs,one doesn't seem enough.
Smallboys issues have been dealt with,less well than I would like in terms of the main culprit but it is what it is.im confident the school have done what they can.
We haven't even got the Christmas tree up yet.
I'm doing my best,but definitely struggling with feeling festive.
You guys are amazing and I appreciate you all so much.just wish I didn't feel so numb right now.

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Sotired42
Francie

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Reply with quote  #124 
Hi SoTired, RE: not feeling festive right now. Sometimes you just have to put one foot in front of the other and 'fake it till you make it' with having a festive mood. Prayers and good thoughts to you. XO
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Francie

tina72

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Reply with quote  #125 
Hi Sotired,
"We haven't even got the Christmas tree up yet."
So you seem to have a traditional German Christmas this year! [smile]
In Germany we have the tree up on 23.12. and we decorate it and the lights are checked (if electric) and then they are out until the christmas eve on 24.12. when we sit together around the fireplace and wait for sunset and getting dark outside. Then all the kids must leave the living room and dress themselves up with nice clothes and the parents quickly put the gifts under the tree (magically). Then we light up the tree and a little christmas bell is ringing and the kids are allowed to come in.
We don´t see the lighted christmas tree until that moment and that is very special.
Some people here do it the US-way now, but traditionally you are right in time not to have up your christmas tree...[wink]
Feeling festive needs some time to feel it and some mind without sorrow so maybe it is o.k. to have christmas and not feel that festive this year. And there is some time left to get to feel festive...
Tina72
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