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Sotired

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Reply with quote  #1076 
Sorry I didn't respond here sooner, there have been some changes here and it has taken me a while to get them sorted.my formerly an/now gastroparesis d has...moved out!with our blessing as the four hours of travel each day was playing havoc with her body.she has moved to living on campus,is absolutely loving it!
She is happy, she is eating, she finally has some good painkillers which are helping a lot...it's just so different.
We still deal with ignorance though-she has a new dietitian who is so ignorant of her condition that she told d that she "just needs to believe she's not sick and she will be better".Sh$t, why didn't we think of that!/s
I would love to see this dietitian sitting with my d in hospital as she silently grips my hand in a death grip because the pain is so bad.they don't give her morphine because this is all in her head.they give it for the pain!hopefully this dumbass isn't going to be her regular dietitian.d dealt with her better than I could have I think,but I will need to watch this woman and make sure she just does the job she's supposed to do rather than try to be a hindrance.
In the meantime smallboy has regained all of his weight-and now it's my middle one who has dropped 6kg,which she certainly didn't need to.so it's again with French toast,milkshakes,never being allowed to skip any meals.she now is complaining about feeling full but I've been very blunt(a huge surprise to all here I'm sure[wink] ) and said she needs to get used to that feeling because her stomach has shrunk and we now have to get that weight put back on.she is a medium build,around 5"7-8 and should weigh around 61-63kg,what she weighed a few months back,before the holidays.current weight is 55kg.gotra be honest, im p-d off to have to do this over and over but it's gotta be done.
Every time I think I'm watching close enough I'm not.but I'm trying.
Its interesting what you said goodenoughmum- I have struggled with feelings of anger,tiredness,a feeling that I don't quite know where to "put "my feelings in a way.like I'm not sure where they go.im trying to learn to come out of hyper vigilance for my oldest,whilst still being aware of the other twos needs around food-I still haven't achieved balance there yet.work in progress as always.
Tooth fairy-I never in my wildest dreams thought we would ever be here.some days I wonder if it's true still. But the truth is I think none of us know what we can do until it's "balls to the wall". Then we find out.
Thank you mdmama ,I hope that we give some hope to others at the extreme end of the scale too.we aren't the traditional happy ending, but I never believed we could ever get to a place where d was happy,eating,drinking,tube feeding because she doesn't want to lose weight ,at a course that she loves and living in student digs where she is safe,but can spread her wings and fly.


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Sotired42
toothfairy

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Reply with quote  #1077 
Hi Sotired,
Great update, Wow, big progress for your D, onwards and upwards!
Pity about  the dietitian though, uugh, but you have D well trained to deal with her [wink].

Good news about smallboy too, sorry to read of the weight loss in your middle child, but you got it and exhausting as it is, as you said it just has to be done. uugghh.

It is no suprise you do not know where to put your feelings, constant rollercoaster stuff.
I hope You get to do something nice for yourself regularly now, and get peace in your heart.
You truly deserve that.
XXXXXXX

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Son,DX with AN, (purging type) age 13 in October 2015 ,  (4 months immediate inpatient) ,  Now Phase  2 , making progress every day. Living life to the full like a normal teen. We are not out of the woods yet, but we can see the light at the end of the tunnel, thanks to ATDT.
ooKoo

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Reply with quote  #1078 
Sotired,

Amazing to read your update!  All credit to you and your ability to battle against the so called "professionals".  Glad Smallboy has regained, and sorry to hear that you are having to get more weight onto your other daughter, but you have got this, you know what you are doing!!

xxx

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UK - South East

17.5 yo D

Dx AN Feb 2015 (Aged 15). Pre-existing low self-esteen and high anxiety. 

2015: 3 x medical hospital admissions. 1 month in IP which she self discharged from [eek].
2016: 3 x hospital admissions.
2017: Currently attending CAMHS CBT. WR, at college, living life to the max.

On particularly rough days when I am sure I can't possibly endure, I like to remind myself that my track record for getting through bad days so far is 100% and that's pretty good. [Author Unknown]
Kali

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Reply with quote  #1079 
Hi SoTired,

Setting off fireworks for your d. now and sending over a medal for you! What great news! The dietician sounds weird though. She should just stick to nutrition facts and weighing instead of cockamanie theories. If I start believing that I don't really have a congenital heart defect will that fix it? I'll try and let you know what happens [wink]

You know what to do, hope your middle d. will be ok after some of your high calorie cooking.

warmly,

Kali

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Torie

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Reply with quote  #1080 
Oh yay, SoTired!!!  You are SoDeserving of all this good news!!!

As you know, we always wonder what kind of news we are going to find when we visit our forum friends' threads ... so so glad yours is in the positive column.

Keep up the good work. xx

-Torie

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

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Reply with quote  #1081 
Sotired I'm in bits reading your updates. As others have said you are an inspiration ; in my early days on this nightmare journey you were one of those dear Feasties offering good solid no nonsense advice and support. I so needed that (and still do).
I wondered how you coped and prayed that one day your dear d would get a break. To hear her progress and eventual diagnosis must be a huge relief. She is at last living a life.
You will sort your middle d out. ED wouldn't dare pick on your family again. However as always vigilance is the key.
Sending happy hugs to you all xx

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Mum to 16y/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
catbells

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Reply with quote  #1082 
Sotired I'm in bits reading your updates. As others have said you are an inspiration ; in my early days on this nightmare journey you were one of those dear Feasties offering good solid no nonsense advice and support. I so needed that (and still do).
I wondered how you coped and prayed that one day your dear d would get a break. To hear her progress and eventual diagnosis must be a huge relief. She is at last living a life.
You will sort your middle d out. ED wouldn't dare pick on your family again. However as always vigilance is the key.
Sending happy hugs to you all xx

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Mum to 16y/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
Sotired

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Reply with quote  #1083 
You guys rock-thank you so much for your support and happiness for us.im still adjusting,but we are on our way to enjoying life I hope.h and I are still struggling a bit with emotions-worry,stress,I worry about catastrophising because I'm so used to living high stress that I could easily end up over reacting to things that aren't that big of a deal (just normal dealing with ASD stuff).
And of course getting weight onto middle d.am hoping against hope that this weight gain will be as easy to achieve as smallboys was.
I hope and pray that life continues to be normal for us but all too aware how fragile that hope can be.
Wishing you all strength in the journey and thatbwe all get to experience boredom ...what a treat after years of stress...

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Sotired42
scared_and_exhausted

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Reply with quote  #1084 
Sotired your news is wonderful, and it's so good to hear of your daughters progress. Is she getting better physically?
And try not to worry too much about d2 (Not easy I know!)
You've got this.
Sotired

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Reply with quote  #1085 
No, she is not getting much better physically.she is the happiest she has ever been,is loving her course,getting close to full marks, BUT, today my h had to pick her up from her course and tonight she is back in hospital with a stomach bug.she still asked for her feed to be brought in,bless her.she is still very frail-when she came back here today I asked her to call her doctor to give a heads up that she was unwell so she did.they rang back an hour later with bad blood results so her dad went with her to hospital while I looked after smallboy.
I don't know how things will pan out long term-I suspect not well and we will outlive her.its not something I like to focus on but it's always in the back of my mind.my physio likened my life to juggling knives and always waiting for one to fall-and he's not wrong.i woke up feeling sick to my stomach and wasn't even surprised to recieve ds call this afternoon.
She also needs a bit more common sense-her course is off four days,on for three and she should spend the day before course restarting resting but instead she spent it hanging out over here with a friend.if she had done that on Sunday she could have got us to help by dropping her back.
Sigh.they all learn the hard way,I was no different,but it's hard when she suffers so much for any mistake made.
Hopefully she will come out tomorrow night.
Gastroparesis sucks.

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Sotired42
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Reply with quote  #1086 
Best of luck over the next day or so, you are a very wise person.
I like your physio!


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Son,DX with AN, (purging type) age 13 in October 2015 ,  (4 months immediate inpatient) ,  Now Phase  2 , making progress every day. Living life to the full like a normal teen. We are not out of the woods yet, but we can see the light at the end of the tunnel, thanks to ATDT.
EDAction

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Reply with quote  #1087 
Thinking of you and your family sotired . . .

Thanks for keeping us updated.
mjkz

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Reply with quote  #1088 
Sotired, hope she is out and back to her class.  It will take awhile for her to learn how to pace herself. She just moved out and is probably living alone (or without you right there) for the first time.  I know I went nuts in college that first year or so without mom and dad looking over my shoulder.  She will get there.  I'm so happy for you all that she is living life. It may not have been the life you would have chosen but she is still out there actively doing what she can and is happy doing it.  In the end, what more can you ask for?
Sotired

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Reply with quote  #1089 
Just a super quick update about middle d who had gone from 63kgs to 55kgs-one month in and she s now at 58kgs.altnough the doc initially aggravated me with talk of d being in normal weight range just barely, she then redeemed herself by saying to d that she really needs to weigh 63kg.d has accepted this with good grace thank god.
Smallboys weight continues upward-now at 34.5kg.
I have still been waking up every day sick to my stomach,but am hoping this feeling eases as my children all continue to gain weight and live happy and productive lives.
Gastroparesis d was out of hospital the next morning mjkz and went back to her course that day (it was a library half day so no standing).she comes and goes from here-when she has some emotional wobbles she comes back for a night or two, then goes back.she loves her course,is of course getting neatly full marks and has had people argue to be her partner which really tickles her!
She is signing on to do her next course there too and is planning a quick trip overseas with a friend between one course ending and the next beginning.
For me, this is quick [smile]

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Sotired42
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Reply with quote  #1090 
Hi Sotired, 
UUGGH sorry about younger D, but you are on to it, and really making good progress.
I hope your S continues his gain,it s all such a worry again
.
Honestly, To say you are a hero and a warrior, just does not cut the mustard here.
I do not know how you do it, and it is not fair.

After all you have been through already, you should have some peace in your life now, not waking up sick to the pit of your stomach with more  horrrific stress.

They will get through this, they will be happy, and the feeling will ease.
I hope you are getting some time out? Do you still go to the gym?
Is there a nice pool and sauna you can chill at for an hour?

I am delighted to read about eldest D, she is doing great!
What an achievement so far.
Thinking of you, xxxxxx

__________________
Son,DX with AN, (purging type) age 13 in October 2015 ,  (4 months immediate inpatient) ,  Now Phase  2 , making progress every day. Living life to the full like a normal teen. We are not out of the woods yet, but we can see the light at the end of the tunnel, thanks to ATDT.
mjkz

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Reply with quote  #1091 
So glad to hear it Sotired.  Your doc did indeed redeem herself with the upped weight.  It takes awhile for the sick to the stomach every morning thing to let up. I know I woke up for months after each crisis feeling that way, waiting for the other shoe to drop, hoping things would go well but also planning on how to handle them if they did not.

Overseas-that would be so awesome!!
melstevUK

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Reply with quote  #1092 
Sotired,

I have huge huge admiration for all that you have achieved and had to deal with.  It is fantastic that older D is now living a relatively normal life and that, more importantly, she is enjoying it.  The gastroparesis must be draining but when I remember how ill she was when you first started posting - in all honesty I had fears that she would never pull through.  I am really delighted that she is doing so well and I know with your support and vigilance your younger ones will be ok.

I take my proverbial hat off to you!!  


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Believe you can and you're halfway there.
Theodore Roosevelt.
Sotired

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Reply with quote  #1093 
You and me both melstev-I too can't believe we are managing this well after years of heartbreak.yes,it was a close run thing with the doctor mj,but as I interrupted her once to say "this isn't normal weight for YOU though" to my d she quickly went through the weight requirement to what I wanted.a BMI of 19 is not enough for anyone in my family.
I go to the gym most days tf, I do a mixture of body balance,weight training and rpm (bike classes).i train when my kids are at school mostly though and do it mainly for relief from the massive stress I still feel,currently exacerbated by a extended family situation.when I learn to be less trusting of them it will be a good day for me.
That's really the crux of it-now all the feelings that I could load into one area are dispersed over a large range of problems-i think that's just how my life is.but I'm muddling through,taking anxiety meds now when it gets a bit much and today got a massage between appointments which was lovely.
I find it's actually now that I'm withdrawing from people and am struggling to hold on to friendships-I think some left during all this but I was too stressed to notice.im just trying to get things better-still having a weekly coffee date with a friend at a time,staying in touch by text-but not chasing after people -I'm too old and too tired to worry that much,but still sad though.

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Sotired42
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