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Sotired

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Reply with quote  #1 
ADVISE NOT TO READ IF YOU ARE NEW.
This is tough.we are not a happy ending story,we didn't get to skip off into the sunset with not a side effect of severe restrictive anorexia to be seen.we are instead the cautionary tale,the side of recovery from anorexia that isn't often acknowledged anywhere.
My daughter has gastroparesis,caused by her severe restriction anorexia,where the only way to keep her fed was to NG feed her.now her stomach and intestines don't work.she remains forever on NG feeding,our hospital will not even consider any other method of tube feeding,even though something bypassing her stomach would probably be better.even to get the NG tube was a battle of epic proportions when it came to gastroparesis but we won that battle and my hopes were high that things would go well.
They haven't.
My daughter had an admission on Thursday, after I insisted she get checked out because she could hardly breathe.she has heart damage now-she's probably had it to some degree for a while,but now it's bad enough to show up in X-ray.
She was also diagnosed with pneumonia yesterday afternoon.by 10pm last night,the moron doctor was trying to discharge her,even though my poor girl was a)asleep when she came ,and b)due a potassium test at 1am. My d just told her we were out and couldn't pick her up.she was sent home this afternoon instead.
My heart is heavy.iknow that her life is not likely to be a long one but the difference between knowing it theoretically and having it slammed in your face twice in two months is so very difficult.i had to write this somewhere.i can't post my feelings of despair on Facebook because she reads my account.
We try to just treat her normally,we plan for her brothers birthday in October,we hope for the best but don't really know what the best is anymore.she can't work-she just has no strength,she is tired and sick so often. We had such high hopes just a few months ago,but now they are all but gone.
For whatever remains of her life it is unlikely she can work or even move out of home and be independent. This is the side of things we don't talk about much here.is it because we are the only ones facing this kind of prognosis?i don't know.i do know when things are going very poorly-I've lived through it before.i want to be wrong,but I think I'm not.my h and I have have tried to think of ways forward but cannot.we have not got the financial resources to uproot our whole family and even if we did,we know that the nz system means that they don't have to provide the medical backup that would be required upon return home.
This isn't about anything other than me facing our truth.i fought.and I bought her extra years,but I just don't know how many or what quality they will end up being.i don't regret fighting, not for a minute, but im coming to the sad realisation that my d will be an invalid the rest of her life.
There has been some grieving here between her dad and I.one day we may have to talk to her brother and sister about their sister and what the end outcome is.
For now,we try and enjoy the times we have.

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Sotired42
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Reply with quote  #2 
Sotired, I am so sorry that your D now has an added serious complication from her eating disorder. I can only imagine your frustration at the treatment she has received. 
I would ask for a second opinion from a clinician experienced in treating advanced eating disorders before assuming that all of this is not reversible with improved nutrition. If she has pneumonia, this can worsen the appearance of any heart issues. Thinking of you. 

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D diagnosed restrictive AN June 2010 age 13.5. Weight restored July 2012. Relapse and now clawing our way back. Treatment: multiple hospitalisations and individual and family therapy.
Sotired

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Reply with quote  #3 
The problem we have is that everyone flip flops .we think we are making headway with the hospital only to have another doctor-because they all just work shifts of course,say it's an eating disorder,not gastroparesis as a result of a former eating disorder.
We have tried to get them to see that a different tube might not only improve her nutrition intake,but with that,reduce admissions and help weight gain which she is desperately trying to do.to watch her try and try to eat and keep it down is heartbreaking.
We tried a second opinion privately last year when we thought things were bad then-he said her body would recover in time.i feel like she's running out of time.
We got her notes reviewed by a second gastroenterologist but he wouldn't consider a different approach.
We know of a case here where the people were going to go to Aussie to get a jejunal tube placed and suddenly the hospital here said yes.they then did an NJ and an NG.they did TPN.then the girl accidentally displaced the tubes through vomiting and they would only replace the NG.my d already has that tube.thats the girl you talked about with me mjkz.shes worse off now than before.
If we take her to Aussie,if we could find someone who was willing to do a j tube ,we then have to bring her back to nz and face the fact they may refuse her treatment.
My h and I are talking about trying for another opinion but we don't know who to try at this point.
Once the heart is damaged that doesn't change.our best hope is to try and reduce that from happening,but I'm at a loss how to get someone to help us.once people hear it's the result of anorexia,they just don't want to help.they say she just needs to eat.she does,every day.she has her feed every day.she drinks her fortisip every day.she eats things that I could never have dreamed of when she was anorexic.nobody cares. They want her to have dreams-she does and she tells them what they are.whatever we say,whatever she says and does,it's never enough.
They get angry that she's at the hospital,but they won't try a different approach.
I've tried .now I don't have hardly any hope.now she sits on my lap and she cries about how scared she is and I don't know how to fix it.

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Sotired42
mjkz

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Reply with quote  #4 
I saw the update on her fight. Sotired, I wish you had more options but unfortunately I do know all too well how the medical system works.  You are not the only one who will have your loved one living with you for the rest of her life.  It is something we don't talk about here much but those of us who have loved ones who were/are sick long-term are facing the same thing in some form or another.

When I was in a similar situation with no place that was willing to take my kid at a BMI of 9, I ended up talking to an attorney (Barrister maybe in NZ).  Is that an option?  It really helped to have the attorney let the medical people know that they would be treating her accordingly and they would be held responsible if she died.  I don't regret taking that step at all.  People were not nice but she got wonderful treatment after that.  I could care less if they were nice.  I just wanted results.  It was hard on my daughter as I know it is for your daughter when people were not very nice but we were able to work through her anger and keep her from self discharging due to people being rude.  I don't know enough about how the legal and medical system work in NZ but I would think talking to someone about the crappy treatment she is getting would be an option.  Also I think your daughter needs to let them know she wants more than palliative care.  Sounds simplistic but I was reading somewhere about a woman in NZ who was only offered palliative care for her eating disorder until she said no, she wanted treatment and kept pushing for that.

I wish I could offer more but know that you are not alone.
Kali

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Reply with quote  #5 
Dear SoTired,

My heart is breaking for you, your daughter and your family. 

Who is the most expert and well-regarded gastroenterologist in NZ? Can you take her to him/her?
The same with a cardiologist. Or is there someone in Aus. who is highly regarded you could take her to for a consultation? How can they help her to increase her absorption of nutrients and food? And who is the most expert doctor in NZ or Aus who knows about eating disorders and their long term effects? 

Can her feed and fortsips be increased so that she is getting more?

I have a congenital heart defect and I know how distressing and scary it is especially when someone is young. 

Kali

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Tali97

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Reply with quote  #6 
Hi Sotired,

{{{Hugs}}} Just know you are not alone in this battle. There are times when I feel that gastroparesis just not understood by the medical profession. 

Are you willing to go in the direction of media attention and crowd funding to get out of country treatment? 

In North America, the place with the reputation for the best treatment for gastroparesis is https://my.clevelandclinic.org Dr. Cline to be specific. 

But to let you know we limp along with the knowledge that his digestive system will never allow him to have a full and productive life. Frankly, we try to give him a path forward in life but without any expectation that he will be able to live that his brothers can look forward to. 

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

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Reply with quote  #7 
Sotired - There is ALWAYS hope.  I think we all know someone who has beaten the odds to live a much longer, fuller life than anyone expected, after being diagnosed with all kinds of conditions.

That said, though, it makes sense that you are frightened, discouraged, exhausted, and pessimistic about your d's chances for a full life.  I would imagine you do need to face the reality that things MIGHT not have a happy ending for your d, despite your heroic efforts.  

I wonder what you could try, without severe disruption to family and finances.  Have you tried acupuncture?  Medications like metoclopramide?  I actually feel pretty dumb for suggesting ideas like this, when your knowledge of gastroparesis is surely a billion times mine, but I guess what I want to say is ... keep reading, keep hoping, keep being the superhero Sotired we know and love.

Hang in there.  Love you,

-Torie

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

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Reply with quote  #8 
I am so sorry. My heart breaks for you.
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toothfairy

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Reply with quote  #9 
Oh my gosh Sotired
I am so sad to read this.
I cannot imagine how sad & utterly exhausted you are at this point.
I am thinking of you
Xxx

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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.
Foodsupport_AUS

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Reply with quote  #10 
I am not sure who would be considered the most experienced in NZ, but this guy seems to have a very good handle on eating disorders and its medical consequences. I have seen other talks by him. At the end of the day, it doesn't matter if it is gastroparesis or an eating disorder, your D still needs nutrition and care to keep her safe and give her a chance at recovery. http://www.ceed.org.au/training/ceed-webinar-program-2017-management-medical-consequences-eating-disorders-acute-health   
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D diagnosed restrictive AN June 2010 age 13.5. Weight restored July 2012. Relapse and now clawing our way back. Treatment: multiple hospitalisations and individual and family therapy.
mjkz

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Reply with quote  #11 
SoTired, I've been doing so research and came across this article.  It might be worth reaching out to these docs at the University of Auckland.  Caveat:  I have no clue how much it will cost, whether it is possible, etc. but just wanted to give you some names for people who are doing research NZ on gastroparesis who might be able to help.

https://www.fmhs.auckland.ac.nz/en/faculty/about/news-and-events/news/2012/09/25/research-sheds-light.html

The issue with going to other countries for treatment is that they have to go back to NZ and often times the doctors will not treat the people who sought treatment elsewhere.  Even if they do "honor" what has been done in another country, as soon as that is undone by something they go back to their old treatment i.e. a person goes to Australia, gets a J tube and then comes back to NZ.  After a flare of gastroparesis, the J tube travels up into the stomach, needs to be pulled and the doctors in NZ refuse to put in another J tube but instead just put in a NG and call it a day.  Here is a story about someone who went through that and in the end is worse off than she was prior to going to Australia for treatment.

http://www.stuff.co.nz/national/health/89540016/Unable-to-eat-Nelson-womans-battle-with-debilitating-digestive-condition

It would be awesome if we could get SoTired and her daughter to Cleveland Clinic (my daughter went there for her GP) but it would really be expensive (what isn't in the US medical system??) and she would in the end have to go back to NZ.  I know too that SoTired's daughter is treated badly in the hospitals because of her prior ED diagnosis.  It is something I've run into with my own daughter where she has a reputation and people treat her according to where she was years ago rather than accurately assessing her condition now.  We were very lucky in that the doc at Cleveland Clinic did not look at her prior records but said instead tell me your story.  He listened to us before even looking at the records which was amazing so he accurately diagnosed her condition.

I'm not trying to speak for SoTired but rather point out some of the obstacles faced in seeking treatment in other countries and then having to go back to NZ.  I have no doubt that NZ is an awesome place that I will visit sometime but medical care at least for GP is in the dark ages.

Quote:
There are times when I feel that gastroparesis just not understood by the medical profession.


Yes!!!!  God bless you Tali.  You are so right.  The GI system seems like a very simple system compared to other systems in the body until it doesn't work anymore.  There are not a lot of options out there and when the drugs don't work well, you are stuck.

Quote:
There is ALWAYS hope.


This is true and when in a flare, all you can do is hold on and pray for return to baseline.  My daughter's GP is nowhere near as bad as SoTired's daughter but she does have flares (waxes and wanes).  During those flares, she has projectile vomiting, swollen abdomen, horrific nausea, extreme pain and nothing seems to help.  I feel more helpless during those episodes than I ever did trying to get her through anorexia.  She ends up hospitalized with NG tubes on suction to help decompress her abdomen, morphine, fluids, electrolytes.  This is truly a horrible disorder and there is not a lot that can be done.  Yes, new drugs are coming out but that all depends on whether your motility is such that you can absorb them.
Sotired

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Reply with quote  #12 
Thank you everyone for your kind thoughts and suggestions.
MJKZ thanks hon for taking the time to explain to the others why we aren't travelling overseas for treatment.
We have no human or financial resources for overseas treatment and as mj says,the hospital here is under no obligation to treat my daughter when and if things go wrong.
This isn't easy.we struggle,we wrestle with the decisions that the hospital makes,that we make.
We have two other children-one with multiple special needs,one with moderate to severe dyslexia who is sitting exams.we understand that many ,many families would put my gastroparesis d first if she was theirs.
From them I ask for understanding.our ds illness rules our household.although she had a trip overseas this year,none of the rest of us can travel more than an hour away by plane,in case something goes wrong and we have to return quickly.
I can't leave my other children to travel to get my d treatment-we are a one income household,living in the most expensive city in NZ.my husband works full time and has just started a new job,so has no leave accrued.i have no family to leave them with who could cope with their needs.im still recovering from surgery myself.
I am frustrated.but I also get frustrated at my d.she is just out of hospital and talked about an overseas trip she wants to do.she has pneumonia and went out insufficiently clothed for her weekly blood test-luckily I had a jacket on that I could give to her.she hasn't been taking the expensive probiotic I bought for her.she I said 19, but in some respects acts more like a 15 year old,the age she got sick at.ive put my foot down about any travel until she has had no gastroparesis attacks for three months.the truth is I could do nothing to stop her though if she chose to leave to travel.i would have to rely on the airport staff refusing her travel.
Mostly I manage okay with the restrictions our life has,but I'm at a point where I'm upset that our life is so limited.in part this is due to my surgery meaning I can't go to the gym or walk my dogs or indeed do much of anything.it makes it harder to cope.
I have looked at all the links to what has been suggested here and will follow up if I can.
If I sound fatalistic,that's because I am.i will do what I can,but I have to accept I have pretty much reached the limits of what can be done.

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Sotired42
toothfairy

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Reply with quote  #13 
Thinking of you,  

Please do something nice for yourself today xx

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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.
Kali

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Reply with quote  #14 
Hi SoTired,

I understand the financial constraints and the responsibilities to your other children that you are facing.
Would it be possible to phone the dr. in Australia that Foodsupport_Aus had suggested and to ask whether he has any suggestions about colleagues in NZ who might be qualified to treat your daughter? 

warmly,

Kali

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catbells

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Reply with quote  #15 
Hi Sotired - I have no words. I am sad, angry and so sorry with what you have to deal with. I cant offer any practical advice like others but as one Mum to another mum I hear how tired you are. I'm only just over 2 years into this with my d and lately I feel  that I am clinging on to my sanity by my fingertips. I don't know how you do it with all the needs you have pressing onto you.
As TF says, do something nice for you today. Be compassionate to yourself. You are a hero Mum.

Thinking of you and your family 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.
mjkz

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Reply with quote  #16 
ST, what does your daughter want?  Part of what keeps her in the cycle (and you said yourself that she acts like 15 instead of 19) is the fact that she gets upset when someone tells her it is from her eating disorder and self discharges.  My daughter was the same and we really had to have a heart to heart about her self discharging.  Every single time she did that, it just made getting her care that much harder.  It is hard to be treated badly but at the same time she had a reputation of making bad decisions and everything had to her way all the time.  The medical community doesn't work that way.  All they see is someone who keeps turning away the care they try to give so they give up and treat her accordingly.  It is not right or easy but your daughter needs to take an honest look too at what she wants and how to get it.  She needs to be proactive instead of reactive is the best way to put it I guess. 

Also remember that she did manage college and living away from home for awhile so while things are looking bad now, she is in the middle of a flare.  Things will calm down.  She also has pneumonia on top of it and yes, things look bleak now but hold on because they will get better.  You are a captive audience to all of this because of your foot and your usual coping mechanisms aren't available.

Have you looked into respite care?  You are not trapped within a one hour plane ride of home.  You can go further than that.  What I did was set up respite care-home nursing to come in at least once a day and made sure my daughter had a medic alert button (push it and ambulance is called).  Your daughter has friends that I'm sure would be willing to check in on her and you could call from wherever you are.  Obviously you need to do this when she is not in a flare but she is an adult and can advocate for herself.  She might surprise you at how resourceful she can be if you are not there.
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Reply with quote  #17 
Hi Sotired,

I have no wise words or magic wand, unfortunately but I didn't want to skip over your thread.

I am so glad that you shared you deepest fears and sorrows with us. It's hopefully helpful to you and our community benefits from hearing about all sides of this illness, the good, the bad and the ugly as well as the downright heartbreaking. I hope you never hesitate to post what YOU need in order to get you through the day.

I don't have any advice because I know you already do everything possible and will continue to do so. I so much admire your resilience and determination and courage in dealing with the unfair share of life's burdens that you and your family have to cope with.

A big fat cyber hug,

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.
scaredstraight

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Reply with quote  #18 
Sotired, I am a frequent lurker and don't have any advice or brilliant solutions but I wanted you to know that you have someone on the other side of the ocean sending you and your whole family love.


Sotired

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Reply with quote  #19 
I just wanted to say thank you.it means a lot that I can come here and safely say how hard this is.
I'm always thanking you guys for your support,but honestly,when I need it and I get it,that's still a wonderful thing to me.i have had so much judgement in real life and it added so much to my burdens.
To know that people hear us when we are in despair and simply acknowledge our pain,our isolation,our fears...that is a gift.its a gift that I appreciate so much and I'm sure others here do too.
It can be easy to offer more for the person to do,but sometimes what's needed is just what I got.i felt listened to.my feelings felt acknowledged,not glossed over.
Living my truth is hard,but for today,my heart feels better.

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Sotired42
Sotired

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Reply with quote  #20 
I will work on the practical things soon though.my d is too.
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Sotired42
martican

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Reply with quote  #21 
Sotired, I feel your despair, your pain, your frustration, your sadness. I am from the opposite side of the world, and I often think about your post how heartbreaking this must be for a mother to see her child in such state and not improving. I have no wise words to say, just that you are in my thoughts ((()))
mnmomUSA

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Reply with quote  #22 
I am sorry.  Battling this is such a nightmare, and to add this on top.  You have done what you can, and sometimes, it just isn't enough.  It breaks my heart.  I can't imagine yours.  (And, I do think this post is entirely appropriate for newbies, and everyone else.  It reminds us once again what is at stake, and why you must hit this thing with everything you've got.  Literally, our children's lives depend on it).  Again, love and light headed your way, and I hope you feel it surrounding you.
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D, age 17, first diagnosed March 20, 2013, RAN, at age 13 Hospitalized 3 weeks for medical stability. FBT at home since.  UCSD Multi-family Intensive June 2015. We've arrived on the other side.  :-)
Mamaroo

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Reply with quote  #23 
Just letting you know I'm thinking about you and sending lots of hugs.
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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.
Kali

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Reply with quote  #24 
Thinking of you, SoTired, and hoping that you are healing after your surgery. Sending warm thoughts and a virtual beverage of your choice....let us know how it goes.

Kali

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Sotired

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Reply with quote  #25 
We bought a wheelchair last night.i feel like I did right back at the beginning of this horrible nightmare.my stomach is constantly in knots,I don't sleep more than 5-6 hours a night.the thing is you see,I've been here before.ive lived in a house that gradually just filled up with medical equipment.i helped nurse my mother through a terminal illness.
But I didn't have children then who were going to live the horror right along with me.now I do.i didn't have to pretend that everything is going ok.my middle child is right in the middle of mock exams,so pretending everything is ok is actually important for now.she knows it's not good-I don't need to drag her in front of the reality mirror right now to prove it.
My h doesn't want to talk about this usually,he's the more upbeat of us two-last night he said "it's the beginning of the end isn't it?".it broke my heart that now,even he feels like that.
It may be that we have years of this.one little heartbreak after another.
And it's easy to say fight- but for what?so she can suffer years more in pain?ive seen what that does to a person and it's awful.is it morally right to make someone suffer like that?but then,she doesn't want to die,so obviously I should still be trying.
But whatever we choose the reality is hard to take.what we would fight for would be a different tubing option.we have seen three gastroenterologists.two public,one private.no one would try a different tube.
For now,we do what we can.and now we have a wheelchair.this morning I found myself composing her eulogy inside my head.i wrote my mothers when she was dying,so I have some idea sadly of how it's done.
We continue living our lives as best we can.i don't cry.but this is hard.

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