I permanently discontinue use of the feeding tube (whether it be the NG/NJ/PEG). I do what I’m essentially doing right now: I continue to eat three meals a day and at least two snacks. My weight more or less stays the same, but I eat. I more than likely am fired by my treatment team for not using the tube. But I have the support of my family (namely, my husband [who rocks America's face off] and amazingly fab mom) who believe that I am eating and doing better than I ever before have, and are okay (and really, prefer) the fact that I am not being tubed. They believe in me.
Scenario Sucks, Too:
I place the feeding tube again (whether it be NJ or PEG, I’m not sure). I suffer serious physical consequences that include but aren’t necessarily limited to: severe sinus and allergy problems, stomach issues, skin rashes, etc. I eat less because I’m not near as hungry due to the ridiculous amounts of Boost and/or Jevity being pumped into me. My skin breaks out in a painful, embarassing, hard-as-hell-to-get-rid-of rash. I hang my head in public, and am too embarrassed to look people in the eye. I am able to continue treatment with H and M, but I resent them a little. I gain only a small amount of weight, despite the high amounts of cals being pumped into me.
----------------
These are my choices. M and I had a really good talk about it yesterday in our session. It was a very “adult-like” and respectful conversation. We seriously talked about my options, and she said she’d respect and support whatever I decided to do, re: if I decide to not do the tube, and I’m fired, (she hates the term "fired" by the way, but it fits because I truly feel that's what's happening to me) she’ll respect that and believe that I can try it on my own. So I have a lot of thinking to do. I vowed a year ago when I started seeing M that she would be my last freaking therapist. I don’t want to keep trying, keep starting over with someone new. So, if I’m done, then I’m done. You know?On one hand, I truly am doing quite well. My family has never seen me happier and more productive and able to survive on my own before, like, ever. I’m eating, and not just eating to barely survive, but to enjoy it. I've discovered that I love maple bars and chocolate bars with toffee in them. I allow myself to drink OJ, which before was a no-no because it had cals in it. I eat cookies and ranch and put butter on my toast. I even, dare I say it, like to eat.
…But if I do choose this path, I’m essentially telling myself (and the world) that my low body weight is okay. –But isn’t it okay? If I’m eating and taking care of myself, I shouldn’t have (and do not, presently) anything to hide or be ashamed of.
But if I go the route of the tube, it stops being for me. It turns into a power struggle, because I’m so angry I have to have this funsuck taped to my face. I eat less because I’m too full, and I hate that I want to eat and can’t. I have diarrhea more. I throw up more. My stomach hurts more. My face breaks out in a rash that makes me look like a pubescent teenager. But, then I can stay in treatment. Wait. Do I even want or need treatment anymore? I think a little, yes. But I also think I’d be okay if I didn’t have it, either.
M says that she doesn’t think it right if she continues to see me if I don’t gain weight, because by seeing her I’m essentially saying I want and need help, but if I don’t get the tube to gain, then I’m also saying I don’t want help.
Or something.
It doesn’t matter that she’s seen how hard it is for my body to gain even a pound. It doesn’t matter that she and my D look at my food log and are thrilled with how much better I’m eating.
All that matters is that damn number.
I thought the number on the scale wasn’t important. Isn’t that we’re always told, over and over?
So what gives?
I have a lot of thinking to do.
43 comments:
Wow, a lot of thinking to do indeed.
Brie, it sounds like you're doing great. I think it might be time to find a new treatment team (just to help keep you on track). I don't like M's black and white thinking. I think we've seen what the tube does to you and it's not good.
Honestly...and I'm not you, so you don't have to listen to me, but le scenario 1.
But I wouldn't quit therapy -- I'd just find someone else. I think a 2nd opinion is at least warranted. No?
Scenario two just does not seem survivable. And I'm sorry that she's just going to cut you off like that if you don't choose it. I think that's really, really uber lame. Lame-o.
YOU are not lame. :)
Ugggh Brie. This is complicated. It sure seems like there is no easy answer, maybe no answer at all. I hear you on not wanting to see yet another therapist and start over. But staying with your current weight-obsessed team seems bad too.
Uggghhh I say. Uggghh.
Oi vey, this is not a comfortable situation. I'm sorry too that you've reached this point with your doc - it takes a really long time to build up those relationships, and starting over blows. But it might be the right time.
It's so difficult to get your head and your body in the same place. Your head seems to be in such a good place; be very proud of the work it's taken to get you there.
BTW your "fixing mommy" post from a few days ago made me feel like I had something in my eye. Like a tear.
Wow this is a lot to think about for you.It does seem a bit controversial that they are so focused on getting you to a certain number. I am wondering if your body is "suffering" or "unhealthy" at the weight you are currently at. By that I mean, well obviously you are a naturally thin girl and form what I can tell from a a tall and thin family, so you are genetically made to be a thin person. Soooo, I'm not saying it's okay to stay at you weight but perhaps, maybe, this is where your body is going to stay. If you are medically comprimised by the low weight that you are at then of course that is not good, but if your body is functioning and healthy for the most part, and not having problems that are directly weight related then perhaps it is ok to just be where you are. Maybe if you didn't have to focus so much on gaining weight you could lead more of a "normal" and "healthy" life. Does this make any sense at all. I feel like I am rambling a bit and I am just throwing ideas out there. I am not saying one way is right or better than the other. Good luck on whatever you decide is best.
As long as you continue eating (and drinking Boost), I truly believe that the tube does nothing but contribute to your anxiety which in turn makes it impossible for you to eat/keep anything down. I know your weight is extremely low but you are happy, have energy, and generally feel better without the tube. Maybe, just maybe, this is the weight your body has chosen to settle at.
I think you can do it, that you have been doing it. You were absolutely miserable on the tube and it only made your health issues worse. I have never seen you happier or healthier than you are now.
My opinion is that you can do this without the tube. If it ever got to the point where you couldn't eat on your own, it would be different. But you ARE eating and ARE doing what you are supposed to.
But no matter what you decide, I am behind you 100%. You need to do what you think is best. xoxo
P.S. I like what Krista said. I don't think your treatment will ever take into account the fact that GENETICALLY, you are very thin and very tall, with a very high metabolism. As long as you aren't in medical danger and are eating normally, I don't see any reason for the tube. I have never seen you more sick or miserable than when you had the tube :(
Wow! I just reread my comment and I am mortified at the number of typing errors. Please excuse them!
It seems that you know what you want to do - but just need to jump into it. I, personally, think you should be without the feeding tube and be more "you". You're not a baby, you don't need to be monitored on what you eat, how you eat, etc. You're a mature woman who knows what needs to be done and doesn't need to be babysat. Whatever you decide, you know what is best.
I too like what Krista said.
I can't believe your T is being so black and white. I have seen and amazing change in you just through reading your blog and am so proud of you.
I think we are all right behind you no matter what you choose.
You are so great and have so much amazingness in you... thanks for sharing a bit of it with us through your blog!!!
xoxo
Okay Brie, I'm sorry to be the one to actually say what you probably don't want to hear, (and yes, I'm scared to say it), but I really think you need to stick with your team and not start over with someone else. If you don't get tubed, then yes, you virtually ARE telling the world that this weight you are is acceptable, and it is not. It is very, very low. Not having a period is evident of that. Having a BMI as low aa yours is evident of that. So, no, you are not YET out of the dark, but you ARE on your way to the light. I think this decision is a huge one and one that I encourage you to really look deep within you. Is wearing a tube for a few months really going to matter in 1 years? I've known you for almost 10 years now, and you have never been what therapists would say, "recoverd." I know it takes super long to recover...heck, it took me like 20 years.....but I stuck with it. I don't doubt that you are eating and snacking, but I have to say, that I am very concerned that once you stop therapy, over time (not right away), you'll need some help with your weight and no one will be there. I truly do fear for your life. I'm not kidding whatsoever when I say this. You're my friend and I love you and want what's best for you. Yes, the tube or PEG is uncomfy and increcibly embarrassing, but if it can be a step in healing you, than why kick it out the window? I know you're doing your best right now and YES I am SOOOO proud of you, but I wonder how long it'll last. I wondered that about myself as well and I think it's a legitimate question. Who knows what may happen in the next few weeks or months or years, so many things can trigger those old habits...even getting the simple flu. I just really fear for your life. You are not well yet. You're not out of the dark yet. You still need some help, although I know that's hard for you to acknowledge. If you don't want the tube, perhaps eat even MORE than what is on your meal plan, seeing as you're not gaining much. That's an obvious one...you need MORE food. Can you increase your food intake and feel good about it all by yourself without someone to process your feelings of weight gain with? Or get the tube and, yet again, eat even MORE....even when you aren't hungry, b/c your body will always feel full...you just have to stuff it in, you just gotta!
Please know I will always be your friend, no matter what you do, but I worry endlessly that I'm going to lose another person I love, and I can't handle that right now. I've already lost too many people. If you want to talk about what I've said, you can e-mail me if you want or call.
I hate being the only one to disagree with the other comments, but I care so much for you, that I can't just sit here and "watch" you die.
Please be careful and know I only say these things b/c I love ya!
- Heth
Heather,
I appreciate your concern, but I felt while reading your comment that you think I'm hardcore into AN. I'm NOTHING like the girl you used to know, eating disorder and emotionally. You don't know ME (unfortunately) very much at all. I've changed so much since that first stint in treatment back on 02 when we lived together.
My weight is where it's at because my metabolism has been damaged by the many past years of starvation. It IS NOT an accurate indicator currently about how much I am eating.
I was without a treatment team for a year in between treatment and I ate wonderfully. So no, I don't think that in a month or two I'll "stop eating."
I've had the tube long enough (on and off for almost a year) to know how my body reacts to it. I'm sorry, but having the tube is not as simple FOR ME (not for everybody else) as you made it seem.
I know I need to think very seriously about it, and I am. But I'm not doing as badly as you made it seem.
I just want to clarify that.
xoxo
Wait...I thought in the year you went without therapy you lost a lot of weight. Just wanted to call you out on that (if it is in fact true). Please clarify for us.
I don't want you to do the tube either. I don't think you need it. I completely believe you have a f'ing crazy metabolism and I'm sorry that I am also jealous about that! You are indeed built like a greyhound. But like, way hotter and less canine-ish. But you know what I mean.
Sorry to disagree but the tube makes you SICKER. So yes, it might not seem like "that big of deal" for a few months, but I truly believe it is actually detrimental to your weight gain. It makes you sick, unable to eat, anxious-ridden etc.
You are not on your death bed. I have many non-ED friends with extremely low BMI's. It is just the way their body is - no matter how much they eat, their weight remains the same.
So unless you are on your death bed or medically compromised in any way (which you aren't) then you don't need the damn tube!!! Sorry to be so blunt but you can eat on your own, as you have proven over the past few months.
And it doesn't have to be so black and white as "no tube = no therapy." You could always look for a treatment team that actually helps you instead of making you feel like total crap.
Just my two cents :) Love ya.
Totally agree with my girl Jax.
oh baby, how hard this is. I will be honest and say that I am torn about what to say. The mother hen that comes to the fore when I read this feels very strongly that you need to gain weight to restore the extensive damage that anorexia has reaped. And of course I don't want you to be without some professional support (but then again I plan to be in therapy for life!!).
And then the other part of me knows that you're doing better, knows that you're doing as well as you ever have, and of course I have immense respect and love for you and absolutely do trust in you.
So, brie, my sweet Brie. I don't know what to say. Both these options seem so polarized and my hope, I guess, is that a middle ground might be found.
Whatever you decide, my friend, I will be here, and I'll do what I can to support you.. in whatever form that's helpful.
Love, Z
Oh Brie, there is so much I could say but lucky for you I don't have the time to bore you to death (maybe I'll shoot you an email later when I have a free minute). But I do want to say, trust yourself. No one knows you better than yourself and those closest to you. There are so many different ways to recover, the path is different for everyone and there is no one right way. More important than HOW you choose to go about it is that YOU are the one in the drivers seat. This is a difficult, delicate situation...but it's also a great opportunity to realize what great strength you already have.
OK, that's pathetic that this is my version of short!
I appreciate you guys for your support for me.
But I'm sorry H, I'm really upset by your comment. I can't stop thinking about it.
I felt it was very presumptuous, especially seeing as you haven't seen me or really "talked" to me in 5 years. Like I already said, I'm fortunately not the girl you used to know.
I feel that my husband and mom and family (brothers and sisters) have a better feel for how I'm doing than you. All of them would disagree strongly with almost everything you said.
And I'm hurt.
I'm aware I'm throwing out my thoughts in a very public forum, and I should be able to take hurtful and presumptuous comments. But this was too much. I didn't, in this post, ask for advice.
I didn't even ask for support, but thankfully, that's what most are doing.
I cannot tolerate comments like...*this.* Comments that are not only presumptuous but overly dramatic.
I'm not going to die, and I'm not going to stop eating. Just because somebody is a therapist, it doesn't make them a god. They can be wrong. And you know what? I truly think that mine might be regarding this.
I truly have no idea what I'm going to do yet about all of this. But if I don't do the tube, then I can promise you that all of that shit you predicted isn't going to happen. I've come too far, learned too much.
I'm sorry if this is hurtful. But you really, really hurt me, and I hate that I feel I have to defend myself, but I do. I'm SO SICK of defending myself, and I refuse to do it anymore on MY BLOG. This is a safe place for me. I need this feeling of "safety" to continue,and that's why I need to write this, to set boundaries.
... Please don't talk as if you know me well, or know what I will or will not do if I am not tubed. And leaving it in a comment especially wasn't appropriate.
And yes JB, I have maintained my weight for a year without a therapist.
Twice, actually.
Courtney, I just re-read your comment. And I cried. So thanks.
Hi Honey.
I just want you to know I support you 100%. I know you better than anybody else in the world, and I know your heart and your intentions. I know you want to (and are) recovering, and if it isn't as fast or as simple as some would like it, it doesn't make it any less valid or true.
I've always told you that you are a "woman of progression," and that's one of the reasons why I fell in love with you - because you are always constantly trying to better yourself and learn from your mistakes and pick yourself up again and again. Not many can do that, not many are as strong and brave as you are. And not many would be "brave" enough to share it with the whole world.
I know you can do whatever you set your mind to, whether it be with a tube or without, with a therapist or without - whatever.
You're doing better than I've ever seen you. When you ask me to go get you a donut some nights after dinner, I wish I could convey to you how happy it makes me to know that my girl will allow herself something as simple and pleasurable as a donut. The Brie I used to know would never have done that.
So I love you, and I support you. I know that you will recover, with or without the help of a tube.
OMG Brie, I have got to come to your defense! I think what "Heth" tried to do was come out with her "honest" opinion, but it went WAY TO FAR...especially on a blog! No. no. no. If someone has that "strong" of an opinion and something that personal to say, say it in a personal email! If you are going to "rag" someone out, do it privately and don't expose people to the world. It's so uncomfortable for that person to have to "defend" herself on her on blog. Blogs are an outlet, a way to vent and noone wants to get slammed on their own blog.
All of you should know that Brie is amazing and has come soooo far! I truly think her body is now fighting a metabolism war. I know Brie is doing whatever she can to recover, her body is just trying to figure it all out! Thx for all of her positive support! Love ya girl!
Hey my dear,
I know that you and Brandon will decide through lots of thought and discussion and prayer what is the right course for you to follow. I think that you are both very cool.
You're right, Brie....I made a mistake by saying this in a public forum. I should've done it more privately. Writing out feelings isn't the best way to communicate, for me, that is, to another person, and after reading your post I felt like crying. I know you're not the Brie you used to be. I've loved hearing you "grow up" into the incredible person you are now, the one I have yet to meet.
I re-read your post and then the ocmments that others made, and although you didn't ask for advice, even the "supportive" ones were actually giving advice too. Not all, though.
I'm intense and blunt. And I know you get your feelings hurt badly, so I am sorry that I jumped to conclusions. I know you're working your ass off at fighting this. That makes me happy. It made me happy reading Brandon's comment. It all just came out of me so quickly and while I was so upset. So, again, I aqpologize openly and will, in the future, if I have something that intense to say, I will instead e-mail you. This is your "safe place" and I'm glad you have it. We all need those places. I hope I haven't ruined yours. But I want you to also know, that I am still concerned. And that's all I'll say on that topic.
You do have a big decision to make, and you need some time to mull it over in your head. Jus tthe fact that you're writing out the two scenario's shows me you realize this is a BIG thing. And it is, so I respect the fact that you're taking it so seriously. That also shows me another side of Brie....one who doesn't just jumps, but checks first at what lays down below. That's a good trait to have.
I know you felt I was harsh, and I did apologize with the way it came out, but I want you to know that it came from a place of deep loss. It scares me....losing someone to anything, actually. Please know that I respect you and will continue to respect you and the decisions you make. I may not always agree, but I will support you however I can. Kind of like what Zubela said, I felt that mother hen come out of me when I first read it.
So, don't worry hun. It's over. Take a breath. Be upset, if you need to be, and then give one of your glamoris smiles, and ask Brandon and Cade to hug you, and know that it's over. You can do this. You love life way too much to throw it away, and that is often more than I can say for myself!
Can we call a truce?
From now on I will be more careful with what I write...I promise.
- Heth
P.S.....and way to go on sticking up for yourself....that was good, and I'm glad you were able to defend yourself, even though you shouldn't have had to. So YEAH for Brie!!
I'm torn too. I think Zub and Brandon said it best. I'm behind you either way. I want to ask you to think about your long-term goals - and I think that with either decision you make, you'll have to be compromising, which sucks BIG TIME.
And I have to say, Jana, I'm pretty offended that you'd be "jealous" of Brie's metab. Are you pro-ana or something? Do you know how HARD it has been on Brie to be working her ass off at recovery and remain at a low weight, or even consider the possible health repercussions (which I admit to knowing nothing of - I don't presume that you're unhealthy because you haven't told us that). Sorry, but I have to call you on that one. I think it's a pretty hurtful thing to say.
Hey Brie. I've started and stopped several comments and e-mails to you in regards to this post, but nothing has felt right. I want to say so much, but I think all I need to say is that you and your family are in my prayers during this difficult time. I know you can do this whichever path you choose.
I'm "pro-ana" (oh god I hate that term) if I envy a high metabolism/wish I had one? Does that make me "pro-ana" now?
I apologize to Brie if my post somehow offended her.
I asked, I didn't say you were. I'm just saying, if you go around complimenting people for being at really low weights, what does that say? What kind of mentality are you supporting? What are you reinforcing? Especially when it is HARD for them to be at a low weight?
we probably shouldn't argue about this on Brie's blog. I think enough's said. sorry Brie :/
Just wanted to say that I wish you well whatever you decide to do. Taking responsibility for you OWN health is such a big thing, I hate that your team won't work with you on this. Oh well, you just have to work with what you have got and you seem to do a fantastic job of that. I admire you for weighing your decisions so carefully. Take Care
shawna
Hi Brie...just was making sure you read my commment apologizing for being so forthright and harsh. Can let you let me know in some way that all is cool, or if I can do something to help you out more?
brie,
your strength is an inspiration. my opinion is this -- as long as you are so positive and continue eating well, you should do so without the tube. the focus on numbers is part of disordered thinking, and I think you've moved past a need for that. sure, you could use someone to call you out if you're not eating enough -- but I'm guessing your husband and mom will be there for that, as well as their constant support.
wishing you all the best!
Heather, Z, JB, and Kyla...
I'm going to reply to *all* of your emails now. :)
Has your treatment team communicated to you exactly why they are so very concerned about your current weight, despite all your behavior-related signs of progress and/or stability? Are there health concerns? If they have reason to believe that you are medically-compromised, I can understand why, for liability reasons, they may be wary about seeing you if you won't commit to ultra-aggressive treatment. But, failing that, this fixation of theirs seems odd.
Lots of support, whatever you choose!
Wow this got intense.
I think we can all agree that B, you know what's best for YOU, that's what matters. Be it "traditional", or "recommended" or not, you know YOU and I do believe from what I've read/know about you that you are strong enough to do what's best for you.
Hope you are feeling ok after all this discussion about something so personal to you. Happy weekend friend! =)
"I’m essentially telling myself (and the world) that my low body weight is okay. –But isn’t it okay?"
If you're organs are working and you are happy, then YES YES YES! This is ok. I'm obviously not a medical professional, but I can say from experience (just like many here) FUCK THE NUMBER. People who are naturally thin DO exist, CAN be healthy, and should NOT spend their lives trying to maintain some kind of number to make everyone else happy.
Force feeding yourself to be bigger when you don't need to is just as bad as depriving yourself of food to be smaller when you don't need to.
Some of us are going to come out of this whole thing thin, athletic, curvy....... what matters is that we're healthy.
Hi Brie. I hope it's ok that I'm commenting on your blog. You don't know me and I've never commented on your blog before, but your posts have meant so much to me for the past year that I've been reading. I've been trying to recover from my own food and brain issues, and your blog has helped me to change my thinking and to actually start liking and accepting myself. You're funny and smart, and you've made me smile on some really bad days. :) So I just wanted you to know that I think you're awesome and I know you'll choose exactly what's best for your life. This random reader is rooting for you...Good luck! =)
~Lyssa
PS I found you a long time ago through The F Word. In case you were wondering.
We've talked...You know that I love you lots and have complete faith that you will make the right decision! Hang in there and know that I am routing for you!
It's so unfortunate that even though we are NOT numbers, some therapists keep reiterating the fact that they want us to in fact BE a particular number. I mean, health and happiness over numbers, right? I certainly think so.
I know I'm not a therapist, but I have a lot of ties to the ED world--am a recovered anorexic myself, as well as a mod on a recovery forum and an ANAD ED support group leader. And have my own recovery blog. And I want to tell you that I think your mindset is healthy and not wrong in the least. And I also think it's unfair of your team to push you away when you are honestly expressing yourself about the tube and your reasons for wanting to be without it.
As far as being the weight you are, even though you are eating and are healthy-- I can relate. I'm still thin and I'm in a damn good place. I eat whatever the hell I want within reason and I'm always going to be slender I think. Do I want a feeding tube? No. Do I need a feeding tube? No. Now, if I was actively NOT eating and actively NOT seeking ways to keep myself on track, then a tube might be a different story.
I don't see you doing anything amiss. In fact, you're being pretty damn brave. You have the people beside you that you need. They support you. If your treatment team isn't willing to change with your needs, maybe they really aren't for you, Brie. And I know you promised yourself you'd never see another therapist again... but don't set that in stone. If, one day in future, God forbid, you do need a little helping hand again--don't let that personal rule stop you from shopping around for someone new.
Take care and keep being your beautiful self.
Much love,
Arielle
Holy cow girl! You know me. Always at the tail end of these things. But, this time I'm glad I was. It was interesting to read all the comments. I don't usually go through and read most of them, but I saw something funny going on.
Anyway...I think you are doing the right thing. I remember a few months ago when you were driving to therapy one day and we were talking on the phone. I asked you if you felt like you still needed people telling you what to do and how to do it. I said you had so much knowledge and skills that you had learned through the center and therapy that all you had to do now was put your mind to it.
It seems like you are ready now. I agree with Bran and Mom that you HAVE changed as a friend and a sister. I'm grateful to have you in my life and to watch you pick yourself up after a messy large amount of years. You've been to Hell....and you're coming back. Love ya and I know you will do the right thing which will be what is best for you, Brandon, and Cade.
Hi Brie,
Holy cow, I wasn't reading any blogs this weekend, and I come back to serious goings-on!
Anyway, I've never met you, only read your blog, so I'm not really in a position to give you advice. But I know that for MYSELF, I hit a point in therapy (binge eating, not AN) where I was ready to move on. Where I felt like I'd sort of gotten as much as I could at that point, and needed to test my wings, so to speak. So I did. I stopped seeing my therapist, and jumped.
And for me, personally? It was the best thing I ever did. It was hard; there were days when I really did struggle, but doing it on my own really showed me what I was capable of in a way that doing it with a therapist didn't.
And I know that you probably wouldn't be thinking about leaving your therapist if not for the tube issue, so that's not really the point. But at the same time, it kind of IS the point. You have to decide at what point you are sane and healthy enough to make your own decisions about your body. And maybe that's now. Maybe you've recovered enough to finish the battle on your own terms. From what I've read over the last few months, it sounds that way. And if that's the case, well, you'll HAVE to disagree with the therapist at some point, and that's a good thing - especially if your family members think so, too. For me, they were the best safety check for whether or not I was rational. ;)
Anyway. I'm rambling a bit, but I just wanted you to know that I support you in whatever you choose. (Even though we've never met. ;D)
Marste
I'm sorry I missed all this darlin. I want you to know that I support you and I'll be there for you, whichever way you decide. xoxo so many times.
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