hard so hard

[Jena]

hi

i'm hurting. it's day 8 and i couldnt' sleep last night even though i walked out of here after 2 days in hospital and was mentally and physically exhausted yet i woke up 3 times, got 4 hours of sleep in total.

i know why because doctor's are stating their approach is changing. my anxiety hits and i dont' even realize it. amazing how i never had anxiety before i had difficult child. it is absolutely amazing to me.

i wake up on the verge of a panic attack that whole total seperation thing where i am who am i ****. it's horrible.

i keep telling myself there are worse kids here she'll get better you can do this. i know i can yet i'm weak today weekend was hard. it's hard with-o her in therapy she's still going to me wtih all of it and it eats me up inside her words self hate loathing anger.

fact it's a slow slow crawl and her bodies so slowly getting better. she did such damage to it.

so i have therapy today, i go to the chapel with-difficult child each day and we sit there together in the quiet. thought might be good for her.

i'm basically surviving out here. i get up shower get coffee in hospital for day. fight her to take a break to eat quick than back up i go. than i'm here from 8 to 9 p.m. than i fight to leave than i sit in car totally spaced out smoke one cigarette and than go back to place and try to sleep.

each days the same. inbetween i run to do laundry for her at the place.

i'm miserable. found a meditation class for wed night i may go to yet dont wanna spend alot of money here. we'll c. cant take walks outside because it rains pours everyday. no one to talk to and we all know how much i love to talk lol.

i ask the higher up's for strength everyday a diff perspective on it its' really not a terrible thing kids here are fighting for their lives. yet some days are good and some days are like today. where i just need a hug a good talk with someone and some rest.

 

[pepperidge]

Jena,

It is horrible worrying about your child, whether you have done the right thing, whether she will get well, etc. You have done the best you could at each step of the way, don't beat yourself up.

Things will get better this week I think. You have your therapy appointment--I hope that the therapist will help you with some coping mechanisms to get through this difficult period. Are there any support groups at the clinic or the hospital? Marg mentioned knitting at one point--that has always helped me, though it may not be your thing. But sometimes knitting shops have an hour where people come and knit and talk.

I think your daughter will make progress, at least she is getting balanced nutrition through the feeding tube, right?
The weather will improve later on this week.

And I think the routine of the hospital during the week when there is more going on will help. Isolation is terrible thing when you are anxious. And your are cut off from all your usual supports.

Things seem bad right now because you are worried about what the doctors' plan is. It you can get that sorted out with them things will be better. Does the hospital have a patient advocate that you could talk to that might be a support to you when you talk to the docs? if it were me, I would be afraid that I wouldn't be expressing myself well because I was so upset.

Anyway, I think you are at a low point right now but I really do believe that things will get better.

Weekends are going to be tough so work with your therapist on a plan to get through them in good shape.

Hugs to you, this is enormously tough what you are doing.

P.

 

[DDD]

You are justifiably feeling overwhelmed. Anybody in your position would feel the same. I wish one of us was nearby so you could have a real life hug and words of support in person. It's good that you are sharing with the CD family. It is good that you are seeking activities to lessen your stress. Just remember that you have a steel rod for a spine. Over and over again you have displayed the strength needed to get the right help. We all have confidence in you and hope/pray that there is reason soon for you to feel better. Hugs. DDD

 

[lmf64]

((((((((((Jena))))))))))))))
I wish I was close so I could give you this hug in person, but know that we are all behind you holding you up.

 

[Andy]

HUGS!!!!
.
.​

difficult child has become so dependent on you! You are so used to being there every second of the day. So used to calling ALL the shots. I think part of the reason the treatment plan is to cut some of your presences is not to take away your control of the situation as to get difficult child to take her focus off of you and put onto herself. She is used to you making everything safe and doing what is right. She is also used to thinking that she controls her world through you. She knows how to pull those emotional strings. She wants you to fight ALL her battles for her, "Mom, don't let them." "Mom, I can't do this - tell them I can't do this!" It is time for her to fight some of these battles on her own. Ask that you be an out of sight team player on these. Staff can work as a team under your guidance to determine how best to respond to her. However, don't be too hesitant to let the staff try some of their techniques.

It is time for difficult child to take on setting up her world on her own. If she wants to be healthy, she must decide to take the steps needed, not because you or the doctors say she has to but because that is what she decides is the right thing to do. I know that you do know this and that you are working toward this. How in the world do we get out difficult children to see that they do have it in them to make the right choices AND to follow the steps that the right choice calls for?

Your difficult child is scared. Shutting down is her defense. She has to understand that she HAS to eat. She has to understand that her total shutdown is so dangerous. She has to understand that only SHE can reverse this and that everyone has faith that her determined strength used to remain shut down will be the strength to turn this around.

Your anxiety comes in knowing that she is capable of making the wrong choice for her health. That leaving it up to her can be a mistake. And when/if that happens, you will feel at fault for not stopping it. Know that whatever happens, you always put forth what was in her best interest. Her not choosing to follow that path is not your fault. (Just like in everything our kids find themselves in trouble with - no one can make anyone do the right thing - we can only show the right path and provide the tools but if a kid turns their back, it is not our fault)

You have done EVERYTHING possible to keep her healthy and safe. She is not doing her part in this and because of her dependence on you, she will continue to put her part of this onto you. You can not fullfill her job.

Your connection to her is very strong. It is hurting as you give her the responsibility that is her time to assume. Your worry over her future is strong. Look toward her strength in her defiance - encourage her to use that strength to get better.

It will take time to get through this change in connection. You are not severing the ties, just changing the responsibilities thus changing the connection. It will feel like you are abandoning her but you are not and some day she will see that. You have to keep reminding her that you are there for her but that there are certain things you can not do. You will always help when/how you can but she must make that choices and follow the process - you can not eat for her - if you could, she would not be here.

I do like the "natural" backing off of "Mom is in a meeting" or such so that it is not a battle ground to focus on. Mom will be back later, until she returns, you have work to do.

Have another talk with the treatment team. Listen to what they have to say. Ask if there are parents (past or present) in similar situations of children so defiant of this treatment that you can talk with. Share again your concerns and how you see the best treatment process would be. Ask the Ronald McDonald staff and the hospital staff for information on parent support groups in the area. You may not find someone in your situation, but you may find other parents searching and fighting for answers.

This has taken a long time to get to this point, it will take a very long time to return to where she should be.
​

 

[susiestar]

I am sorry it is so terribly hard. You feel so cut off from the world, I know. Andy has excellent points about dependence, responsibility and our own very limited power and how hard it is to accept this.

What did the ER docs say? Did you go? you usually follow up on threads but you didn't on the one about you. That is SO typical of us Warrior Moms!! We have a terribly hard time accepting that WE need help too, not just our kids. It really IS needed for you to go get checked out, regardless of how much it costs. GO TO THE DOCTOR.

My post wasn't as nice as it should have been on that thread, and I am sorry. I am really really scared that you are going to have a major medical crisis of YOUR OWN where your body just has had enough and cannot cope with the stress and then refuses to work again. It is possible. Dealing with difficult children can be that hard. Star worried and worked herself into a stroke at a very young age. Timer Lady's body just shut down totally on so many fronts, my body is now one big ball of unending pain that the docs can get from a 10 down to a 7 or 8 most days and on a truly exceptional day it is at a 5. 5 days are extremely rare. That is a pain rating with 10 being the worst you ahve ever had - and I am frequently flabbergasted at how bad a 10 can be. What I thought was a 10 even 5 yrs ago is a 7 now, and what I thought was a 10 a decade ago I would KILL to have back again.

Getting help is the key to NOT having this happen, or slowing it down a lot if it is happening. You are not going to make it through this month with-o help for yourself and we are scared for you.

But I know you are scared too. On every front - for your daughter, for your sanity, for your health, for your finances, etc... I also wish I could give you a big hug.

I don't know what your religious beliefs are, and it isn't any of my business. At some point you are going to need to recognize that you are desperately and frantically trying to control the uncontrollable. You want to control everything so that your daughter doesn't get worse in any way, so that your life will finally do what you want it to. One of the most destressing things is when you realize you cannot control anything but YOUR actions and you turn the rest over to whatever you believe is a higher power. Maybe while you are in the chapel you can think on this. I am NOT trying to shove religion onto you, or to tell you what to do (except for going to the doctor), just making a suggestion.

You and difficult child are not in a healthy pattern. I hope the therapist can help you see this, and help you fight to establish some healthy boundaries for yourself so that you and difficult child are not so dependent on each other. I hate to see how this is hurting you.

You will take these steps when you are ready, and if I sound impatient with you I am so sorry. It isn't what I mean to communicate. We are all terribly worried about you. If you neglect your health much longer you are going to be forced into letting go of a lot of control by your body because it won't be able to handle the pressure much longer. Please please please please see the doctors. It will help your daughter if you do. In the long run it will be a good thing.

Many many hugs, and I am with you in spirit having tea while you have coffee, telling you funny things that I saw on the web, and doing whatever I can to help.

 

[HaoZi]

*HUGS* Jena.
Hopefully as she physically gains her strength back she'll notice the difference in how she feels and it will push her to want to be well.

 

[Jena]

i have therapy in a bit, i asked about support group there's one tonite at the clinic at 5, yet most parents are those of aneroxia or bullimia kids. as per usual. i'll go to both. i'm exhausted though. teh back and forth to hospital all day kicks my butt and the non sleeping.me medically i'm fine besides the basics swollen junk. i'm made well lol.

i took 3 prevacid's the other day and was able to eat a sandwich finally. yet today havent' eaten yet. i'm leaving in a little less than an hr will eat as i drive to therapy. i'd like to just sleep there. yea i'll be so happy when i see this kid eat.

i did talk to the doctor's they see my point i was clear and concise totally backing them yet letting them know if you wanna phase me out which i have no problem with due to attachment issues that everyone keeps going on about. you dont 'know what we've been doing here or maybe i'm not expressing it the right way, i do not sleep here i walk away each night. super hard when kids sick medically and tubes flying about yet i do it. each day i take my breaks i take care of me. so i've been working on the attachment issue since day one. sorry if i was blunt i just keep hearing the same junk lol. yet doctor agrees if we need to to phase me out in a way in which she wont' get what we're doing.

they agreed. so we'll do oh difficult child mom has therapy or support group or gotta wash laundry than come back when it's not time to eat sorta thing. if she catches wind we'll lose her. i told them i wanna go home within a few mos not be living here for a year which is what we'll have if you try to corner her. you will see the difficult child in her bigtime.

husband is going to try to fly out in two weeks again for 2 days, easy child cant' she has midterms. ronald mcdonald house has no one in it super empty right now they said. so there's no ppl there to talk to. i'll be ok. just having a weak day. i am on target during day because she needs me yet at night my anxiety kicks up when i try to sleep. i hate that room there lol. hate it!!!

thanks it truly helps coming in here. i'm sorry i haven't found the time to read others posts i'll try to regulate myself by tmrw and do the same for all of you as you have done for me time and time again

 

[Andy]

Jena, You are in a crisis right now. Don't worry about giving back until difficult child is healthier. Spend your time on the computer receiving support for yourself, keeping in contact with your family and friends, and maybe further research of ways to help difficult child. Being in a crisis as you are, we are all concerned about both you and difficult child.

I know that everything I say you already know. This is like a pep rally - we are sharing our concerns - even if it is something we know you have heard before sometimes hearing it again triggers something, helps to get a focus on something again, brings realization that you do have a support group to lean on.

I am not hearing bluntness in your posts - just you assuring us that you are taking care of things. Try not to be frustrated, we are hearing your replies. As you said, we are not there, we do not know the conversations you have with difficult child's health team/staff, we do not know the details of the treatment process beyond the little you have told us, so there is much that we maybe addressing because we do not know. Use it as a check list - just incase we do give you food for thought that may be new!

Those parents of kids with other eating disorders may have faced some defiance in their own kids. If not to the extent of difficult child, maybe they have a slight insight of a new option to try?

Let us know what you learn along the way.

 

[DammitJanet]

Jena...I have never had to stay anywhere for near as long as you are going to be where you are but Cory was in a Children's hospital when he was a little boy for a shoulder reconstruction surgery. We had to stay there for about two weeks. Lonnnnnnggg two weeks with a hyperactive boy in a half body cast who was stuck in a hospital bed!

Do you read? Like listening to music? What is it that calms you or soothes your soul? I think you must have your laptop with you so you could read on the laptop or listen to music or even watch movies. Just plop down in a corner and as they say on the commercial..."to the cloud!" LOL.

 

[DDD]

There's a time to give. There's a time to take. Now, my friend, is your turn to You've been giving your all for a long time
and we all want to offer unlimited support to you. We really do care about you and your daughter. Hugs DDD

 

[HaoZi]

Don't worry about us, we'll still be here. Sounds like the staff is taking you seriously right now, that's a great thing. I hope you find some parents out there to talk to that help support you.

 

[Jena]

wow you guys are so sweet i'm tearing up. yup im a trainwreck. went to therapy YAY! paying someone to listen to me complain is GREAT!!!

diagnosis; umm your good your under alot of stress your sense of humor will def. pull you thru, pop xanax at night to get sleep and avoid the 3 a.m. anxiety attack take your meditation class, yoga and pop them xanax at night and see you next monday! i was like next monday?? umm i can't come back tmrw?? LOL

i showed up there a mess, was attacking husband via text told therapist that may be a problem. i scream how mean he is to me yet in actuality i hit at him when im at my worst if he even breaths wrong. she laughed and said totally understandable he's a good man and loves you but yes less attacking him would be helpful and maybe than he'll let his guard down. i've said some really bad junk to him.

i have a support group at 5. than xanax at 10. im back at hospital to do tie dye with the art therapist and all the kids on the floor today. it helps me working with the kids stay focused and centered did art with them the other day. difficult child's heart rate so far is ok to do this activity also for a bit.

 

[DDD]

You made me laugh....I think many of us who have had an oppotunity to express our feelings wish we could keep the therapist or psychiatrist at our side! Have you been taking that medication prior to today? Just curious. Meanwhile I hope you sleep like a baby! Hugs DDD

 

[susiestar]

Sounds like you are doing all you can. Just keep taking your medications and doing your best. If your laptop has a speaker then why not try to listen to a meditation audio or audiobook at night while you sleep? When I am having anxiety problems or other problems I find that this is very comforting. Heck, find a rerun of a series you like on hulu and set up a longplaylist if you are used to sleeping with a tv on or with noise. You can toss a shirt or sweater over the screen if you don't want the light.

Sounds like you are doing a great job, esp advocating for difficult child. Often the weekend docs are filling in for the reg docs and don't have nearly as much of a clue as the reg doctor - and are not in charge usually. Work with the head nurse and if hter is a nurse that manages the docs (head nurse for a dept that the doctor is in/runs) then get that nurse on your side too. Our nurses in Dallas thought the docs were nuts but couldn't do anything. Of course if my daughter had refused to do what they wanted they would have done more but she is the hoover it up and do it and then pay for it later type so the PT and Occupational Therapist (OT) and docs didn't SEE her crying all night the way the nurses did. They also were not running to every other floor to get a hot or cold pack for her ever 30 mins because that is how long their hot/cold packs lasted and were ALL she was allowed to have for pain. So in a way all of difficult child's gfgness is helping because she cannot hide it from them and try to cooperate. Then they SEE the problems and are willing and able to do more to help.

You don't need to give us anything but updates. You support us at other times - this is a crisis and is the time when you TAKE so that you can make it though. We understand - honest, we do.

 

[pepperidge]

Jena

I hope the support group was useful even if it didn't deal with your daughter's particular issues. I bet that parents dealing with anorexics or bulimics are scared to death about their kids' health, anxious about everything and face enormous resistance from their kids too. So perhaps you will find a few things in common and they may have been around the block a little and can give you pointers on how to deal with the system. if nothing else they can help take your mind off of difficult child for a little bit and give husband some peace. Hope you get some sleep tonight and that you see some progress this week. How is difficult child doing? Any signs that physically things are getting better?

hang in there.

 

[Jena]

susie weekend docs here dont' exist. her docs are in everyday here!! so it's the same ppl all the time. no i haven't taken xanax during day at all that's when i'm at my best. it's at night in that soccer room at ronald mcdonald house alone realizing hey i'm here kid's sick ummmm ...... enuf said lol.

as far as the rest of it goes support group i cracked some jokes got everyone laughing a big was soo tense and serious when i got there. ppl started to lighten up. ok well i walked out there like wtf. some parents are in week 15!! yup i said it week 15!!

maybe i should get a job???

 

[HaoZi]

A temp job might not be a bad idea. It would get you out, get your mind off things, and give a more realistic reason why you can't always be right there. And the money might not hurt until the headaches of tax time next year.

 

[susiestar]

Consider talking to a temp agency. Temp jobs can be a lot of fun. I was a temp when we lived in OH after I quit the bookstore. It let me take days off when I needed to and bring in a bit of income too. I worked in some really interesting places and met some great people. The nice thing is tha tif you don't liek the work or the boss or something you can just ask for another assignment or say you are busy or whatever. I actually got the job in the bank as a secretary because the boss was super picky and had nothing for a secretary to do after the files were redone (took 2 weeks). I did learn a lot at each job and got to move on when I got bored.

I wouldn't start looking just yet though. Give yourself another couple of weeks to adjust. This isn't easy and you need to figure out how to take care of yourself. I know you hate the room at RMH. Is it the way it is decorated, that you are all alone, or something else? If it is the room iteself, and they are empty, ask to move to a different room. It shouldn't be a big deal. For the being alone, try having an audiobook on as you sleep. You can try audible.com and get 1-2 free ones as a trial offer. You can also check the local library because they may have some you can check out and put on your computer or even some online that you could just download. You can also download nook and kindle books to your laptop and read those if you need to distract yourself from being alone. They have a bunch of free titles if you keep searching.

Don't get ahead of yoruself and assume you are going to be there all year, or 15 weeks or whatever. Let it happen as it happens. ALso remember that this has been a problem for a while so it will take a while to help her recover.

 

[timer lady]

Jena, I've been told many times over the past 3 going on 4 years that if I don't take care of me I'm of no use to the tweedles. The same can be said of you & every parent on this board. We're just so demanding of ourselves & don't know how to give ourselves a break.

I've been reading a very good book (cannot remember the name of it - sorry). There was a paragraph in it that really struck me over this past weekend. We would never treat anyone else the way we treat ourselves. We denigrate, demean, insult & doubt ourselves & believe it's in our own best interest. You know & I know that it's true.

Please take care of you; listen to your MDs & do the therapy.