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kazi67

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Reply with quote  #26 
I'm so sorry to hear your news
My heart goes out to you
I am a new member to this and found your story heart breaking
We are just at the beginning of our daughters journey and I find the information here makes me feel less alone and supported but
I don't think there is anything I can say to you to make you feel better
Except I am thinking of you and your family and I wish you and your family all the best
Big hugs xxxxxx
deenl

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Reply with quote  #27 
Hi again,

Living with severe chronic illness is very hard. You are also in a period where you are adjusting to this new diagnosis and where there is no 'enemy' to fight as there was when your d had ED. It is natural that you will have a rollercoaster of emotions and strong feelings of despair and hopelessness. I sounds blasé to type it but I've found the best way to get though these times is to hold two sets of emotions in my mind, heart, soul at the same time. One, the strong, painful emotions and an acceptance that they exist, are natural and, indeed, essential. The second, is the knowledge that something will change; I will aclimatise to my new reality and they will be less painful or something will change in the situation or I will read something that gives me hope or a chance encounter with someone will alter something.

It really hard to find the right words in print and if I sound somewhat 'off' please believe that my intentions are good and those are to support you and send you some little tiny bit of comfort. Also, that I speak from past painful life experiences so while our situations are different, I can empathise with how you are feeling.

Very warmest of wishes,
D

__________________
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.
Torie

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Reply with quote  #28 
Sotired, I'm so very sorry to read this.  I have been thinking about you a lot as I rip out carloads-worth of weeds and wondering if gardening season will be there for you soon, or if it has already arrived.  I think you find gardening a comfort, as do I.  I wonder if I could send you a plant from my garden - do you know?  I'm sure it would need to be something that could survive being bare-rooted for a while - bringing plants into the US is OK, but bringing any soil along with them is not.  I assume that is true there, too?  Or maybe seeds would be a better bet to weather the journey.  What is your climate like there?  Do you have sun or shade or some of both?

I think of you so much.  So much.

Hang in there.  xx

-Torie

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"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
Tali97

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Reply with quote  #29 
Hi SoTired,
I realize that continuing to fight the system is so incredibly difficult to continue doing day after day. When the doctors and others around you cannot see what is so obvious to you it can be unbelievably difficult.  

Did one of your gastroenterologist do an about face after talking about actions he could take? I wonder if you go back to him and talk about the deterioration that has happened since you saw him. (I get frustrated by doctors that give you no hope and then turn round and ask you why you did not come back to see them sooner. It has happened to me a lot recently)
How effective is patient advocacy in New Zealand? I see that the Citizens advice bureau has advice information about how they can help.  
Is there a gastroparesis New Zealand facebook group or something similar? The Canadian group seems to be the only way that I can find a gastro doc that has a clue. 





__________________
18 year old boy (Gluten Free/Dairy Free 2005)
 IP - March/April 2014.  ARFID.
 2015 - Gastroparisis
Sotired

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Reply with quote  #30 
I will try an advocacy group next I think Tali.for now ,the punches keep on coming.we have just had to make the decision to move her downstairs so that she's not putting herself under more strain.so now she has a new bedroom set up in our kids lounge.
We are getting used to packing the wheelchair wherever we go.
But then I had to give her a harsh reality check.she keeps talking about going for an overseas holiday with a friend and I've had to say no.that the other person would then have a tremendous amount of responsibility.also,when she went overseas before she wasn't in a wheelchair,her heart wasn't as damaged as it is now.she wasn't struggling to catch her breath.
I have offered a family trip round our Christmas holidays.i think we are well overdue one anyway and it will be nice to have something positive to look forward to.
My h and I are both struggling with this a lot.but we are trying to make things as positive as we can and trying to do a few things for ourselves as well.
Still feel sick and sleeping poorly but that's life and I'm hoping once I can start going to the gym for myself again I will feel better.
It's a thought about the plants Torie,but I might get in trouble with our customs officers so I better say no to any plants.its a very wet spring here and I'm still in a moonboot so I can't garden or walk my dogs yet anyway.
I think as parents we often hold two sets of emotions eh deenl?theres the face I present to my children and others,then there's the face my h sees at night where I cling to him and be honest.
Kazi67,thank you for your kind thoughts, I appreciate you taking the time to respond when you are in the middle of hellsville.i hope that things start to look better for you soon.
Mamaroo,mnmomusa,scaredstraight,,martcan,mjkz,catbells,toothfairy,foodsupport,mamabear and Kali, I just want to thank you all so much,for your thoughts,ideas,prayers and hopes,it means so much that you guys take the time to try and lift me up when I am down for the count at the moment.
I never thought it would come to this.but we adjust to our new reality and that is,right at this moment,all I can do.maybe a miracle will happen but that's not my experience in life.

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Sotired42
mjkz

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Reply with quote  #31 
SoTired, miracles are few and far between but they do happen.  I'm not a religious person but you know I'm sending thoughts and prayers your way for both you, your family, and P.  Things will get better.  I know adjusting to the new reality is hard and gut wrenching.  Just know I'm here and thinking about you always.
Francie

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Reply with quote  #32 
Hi Sotired, I just wanted to add that I am very saddened for the situation that you find yourself in. My thoughts and prayers are with you and your family that you all find strength and hope. XO
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Francie

HateEDwithApassion

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Reply with quote  #33 
You know what is so sick about ED? About the time that some kids want to get better - and do get better with the ED side of things -  their body begins to rebel from the earlier treatment of it. It's so unfair and frustrating, and I'm so sorry for the pain you are in. And the frustration of getting the right care. 

I pray that things are not as dire as they feel right now. I will pray for you and your D and family. You have been a mighty warrior and your battles have not been in vain. Her turnaround could be in 5 minutes or 5 hours or 5 days. It really could, even if it doesn't seem likely today.

I am grateful that you are here, sharing your heartbreak. ED recovery is tough and is not achieved perfectly by everyone, in spite of all the wonderful journeys on this site. I think it's important and valuable to be real about that for those of us who are not seeing light at the end of the tunnel - to know we are not alone.

__________________
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.
melstevUK

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Reply with quote  #34 
Sotired,

I have finally had time to read your post and replies and I just want to give you a great big hug.  Your post is brutally honest about the medical consequences of an ed when things are complicated and you have to fight the system and other complications come into play.

I don't blame you for preparing for the worst - when our children are so ill and there seems to be no solution it is only normal that you feel helpless and hopeless.

I know nothing about hearts - so I don't know if time could repair any of the damage done.

I know little of gastroparesis but my understanding is that there are problems with reflux and stomach issues when the digestive system just doesn't work as it is meant to do and the whole process grinds down to a halt.  Is there any chance of gently laxatives helping with the whole digestive process?  I know that laxatives can be open to abuse but at the same time, I keep wondering where in your d's digestive system is the 'hold-up'?  What part of her system is not working?  I know you have had lots of tests but is there any other test which could help identify what the specific problem is? I can understand that right now none of you have the energy to believe that there is anything else that can help or can be done and yet I feel that someone somewhere must be able to offer alternatives.  

Your d wants to live - and so much a part of me believes that this has to have a bearing on the outcome.  I know she may be immature - but what does SHE think is the solution?  What does she want in all this?  What does she feel is 'instinctively wrong' with her own body and system?

I want to weep for you.  Your journey has been so hard and undeserved.  You have two other children who need your support and you have all the financial anxieties as well.  You have still done a great job as a mother and if no other message reaches you right now - I want that one to reach you.  You have done amazing things that I doubt I could have done in your place.  All your family deserve this community's love and compassion and I am sending you mine right now.


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

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Reply with quote  #35 
Sotired,

My heart goes out to you.  You are loved, my friend.  You are loved.
Sotired

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Reply with quote  #36 
Thanks everyone.
Still hard here.yesterday I was crying in the shower and then taking lorazepam,which I haven't had to do in months.we have had to tell d that any fight at this point has to be led by her.the danger of parents being the lead here is that then the medical people think the push for her survival is more something we want,rather than what she wants.
She had a meeting with her dietitian who is going to contact the hospital to see if she can get an NJ feed with NG drainage underway.truthfully,I have big doubts that anything will change,but if I keep trying to talk for my d I don't think that makes things better.
It's a very different system here to what many of you are used to so where it can seem like all I do is say is "yes,but" to you ,rest assured I' vefought hard.im not allowed to take her to another hospital without referral from our local hospital.so far they haven't been willing to refer her.if I just turn up at a different hospital,they will just refuse to treat her and send her back to our local hospital.if I take her to Aussie and manage to get lines put in,the second something goes wrong when we return back home,the hospital here can take them out but not replace them.
The universities here do research,not treatment.so even if they are researching a topic,all treatment will take place at a hospital.there are no university hospitals.
The private people still have to get public hospital people onside for continuation of treatment,that's all done publicly.for almost every illness or operation our socialised medical system works but not in mental health or relatively rare conditions.
I have tried acupuncture with her already,but had no success.
I took her privately to a gastroenterologist a year ago.hes the one who explained that we needed support from the public health system.
If we went public that means we have to be very honest about what caused this and the repercussions could be horrific for my d.once people hear that she had 30 admissions for anorexia they aren't going to look any further than that.if medical people don't,then our chances either the general public,particularly in a place like nz where mental health is ridiculed often ...don't tell me it would be different-I live here, I know that individually people are kind,but in packs online they can be foul.
At this point nothing will make her better-what we are looking for is a better quality of life for her,not a cure.
I will see what the dietitian manages to do.shes a very sensible woman and so maybe they will listen and try something.
The weather is finally starting to improve and my d often does better in the drier summer and autumn months. She is quite down at the moment as her friend who we tried to help is avoiding her now so she has only online friends ,no one in real life at the moment.there is a friend of hers-her last remaining one from school- returning from overseas but I suspect she will be busy with her own life and I'm certainly not gonna blame her for that.
So we will just have to hope that with the coming summer d has a better time of things.and that the dietitian succeeds in getting the hospital to listen.

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Sotired42
EDAction

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Posts: 358
Reply with quote  #37 
Hi Sotired,

For what it's worth . . . I recently listened to one of Tabitha Farrar's podcasts ("The Eating Disorder Recovery Podcast") titled "Dr. G: Tummy Troubles in Eating Disorder Recovery" in which Tabitha spoke with Dr. Jennifer Gaudiani, an internist who specializes in the medical complications of EDs.  She talked about gastroparesis (spelling?) a lot.
Sotired

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Posts: 1,918
Reply with quote  #38 
Thanks EDaction I will look into that podcast tomorrow.seeing as I'm waking up so early,today I sent an email to our health and disability commissioner.im not sure it will do anything,but at least I feel like I've tried something..
I'm just not coping very well right now.when my own gp comes back from holiday I'm going to have to go back on meds I think.i don't want to,but I have to acknowledge that the way I'm feeling right now has to be managed better than I'm currently achieving.
Maybe if I can get someone to listen to that podcast at the hospital they might change their minds.it seems so unlikely though,as even X-rays showing damage is not changing the approach taken.
We are having other issues too and I'm not dealing well with those either.it turns out that I'm not quite as strong as I want to be.
Will definitely get onto that podcast though.

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Sotired42
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