Thursday, January 29, 2009

Raw Raw Raw!

Well, the dreaded D appointment was dutifully dreaded, as I knew it would be.

I seriously don’t even wanna talk about it, because the news isn’t that fantastic.
At all.

What rhymes with PEG?
Suck? No, but it SHOULD.
Balls? Maybe.
THE WORLD HATES ME? Nah, too many syllables.

Since they’ve thoroughly destroyed my sinus cavity, they’re now thinking about drilling a hole in my stomach.
Please, by all means, keep destroying my body. Never mind I've done it already for the past 8 years.


It (and by IT I mean my BODY, and by my body I mean AMAZING) kinda wants some personal space, but whateva.

At least they've given me a week or two to keep stuffing before they decide definitively. EATEATEAT!! I’ve got to do more, they say, yet my D looks at my food journals and is incredibly happy with how well I’m doing. So, what? More Boost? More praying? More luck? Good karma? What’s going to get me to my goal weight, people?!

It sure as hell better not be the PEG tube.

I’m feeling pretty raw today.
And a little emo, too.

Oh and PS I’m thoroughly in love with the Blythe Dolls. I want one!


brie said...

Okay, I'm an idgen calmer than I was when I wrote this post.

Logically, I know they're not doing it to "punish" me. They're being really kind and cool about it, but they're still saying it might be a possibility if my body doesn't start to absorb and use those cals I'm eating soon.

They say my body is in worse shape than I know.

I'm trying to trust. :(

Kara said...

Hang in there, Brie. I'm sending positive non-PEG thoughts your way. XOXOXO

saa said...

Yes, Just trust them! i am a total stranger but i'm rooting for ya!! Also yes i LOVE bythe dolls too, aren't they awesome in an almost creepy way? They kinda cheer me up.
take care! and good luck!

Kara said...

Life isn't fair. In fact, it's very unfair, I hate it. Suck suck suck. That being said, things always work out i the end.

Heth said...

Woah, sorry it turned out so unlike you wanted it to. Keep shoveling it in, girl, cuz I'm reading a book now where the person had to have a PEG in the stomache and it sounds not only difficult (due to having to clean it and everything), but, well, a tad bit unreal. The person hatged it. They'd blend up meals in a blender and the PEG tube would deliver it straight to his stomach. Can you imagine hamburger blended up with a side of fries, and some milk? Sorry, I'm not saying this to scare you, but I can't believe they'd choose that option! Isn't there anything else they can choose besides that? I mean, obvioulsy, you need more than just eating your meal plan, but they're like educated on this topic, there must be another way. Well, my friend, since I'm bed ridden I haven't done so good in the food arena either, not on purpose, but b/c I have to sleep so much due to the brain thing. So, wheenver I'm awake a literally chug downn boost after boost after boost. I'm doing whatever I can to not slip slowly back to ED, so cheers to boost! I found I really, well, not really, but I like the smoothie boosts when they're super cold. They're better than the regualr boost that's more like a drink. Anyway, I feel for ya and am hoping you're able to do what you need to these next two weeks. You'll for sure be in my thoughts.

Heth said...

Wow...that was long, sorry. : ) I'm not always just words, I do listen/read to what you're "saying." Your fab and keep doing what your team says and you never know, you're body could miraculously turn around for the better.

Megan Kyle and Porter Cross said...

Dude that does "suck" and "balls" too :( Sorry... let me know if there is something I could do ??? Sorry man

Pattie Cordova said...

Ugh... I'm not familiar with Peg (and to be honest with you - when I first read your profile and read that you "hate Ed" I thought you were talking about some guy. It wasn't 'til I read your WHOLE blog that I understood what it stood for) but anyway... these docs must know something right? They can't honestly WANT to do something bad to your body but instead help it survive so whatever happens I'm praying for you. I hope that your body will fight back and start absorbing those calories.

Pattie Cordova said...

p.s. Glad to know that I'm not the only adult Momma that wants a doll. The hubster thinks I'm nuts for wanting to shell out precious mula for Blythe. He doesn't understand that the eyes change colors and you can make/buy clothes for it - MEN!

brie said...

Pattie, everyone, thanks.

I know they don't want to hurt me or anything, and they want what's best for me...

I'm just so tired. And frustrated.

And wondering when it will all be over, you know?

Bah. :(

Keely said...

Aw. (hug) That seriously sucks. Let me know if I can do anything to help. We can go out to lunch and I'll eat as much food as you do.

I always hated it when I was the only on at the table that was on weight gain. Maybe it would help to have company?

jana bananas said...

How do they know you're not absorbing the nutrients? Serious question here. I don't understand.

jana bananas said...

Oh, and those dolls are uber cute!!

Did the NG/NJ tube actually help to screw up your sinuses?

brie said...

I'm not absorbing the nutrients because

a) I'm not gaining weight, even on a large amount of cals


b) I have diarrhea pretty much all the time.

And yeah, the NG/NJ tube contributed to the screw-uppage of the sinuses.

brie said...

Okay, now I'm freaking out.

Heather, I'M NOT GOING TO BLEND UP FOOD AND PUT IT IN THE TUBE!!! ;) If I do get it (which I won't) it'll just be Boost.

And I'm not going to get it. I'm going to make sure of it.

jana bananas said...

Ah, the 'rhea. Why aren't they focusing on what's causing THAT? That seems to be the main problem if you ask me. Of course it's going to be hard to gain when you've always got butt runnage!

And, gotta call you out on the cals thing, because I know you were sick so you weren't eating much. So it DOES make sense that you'd lose this time.

But seriously, you need to get the diarrhea sitch figured out and I think you'd be golden!

Heth said...

Omg...I'm sooooo sorry Brie! I didn't mean to scare you. I really didn't. I want the best for you, as does everyone else you know, and if it means a PEG, than by god, get one and use boost in it. I'm so sorry, I feel awful for scaring you now. please forgive me and don't freak me if you want and I'll try to explain better. Oh, I feel awful now. It WILL be okay, Brie.....BREATH some air in very slowly now. You can get over this hurdle. I agree with someone else who commented, wouldn't the docs be doing something about your diarhea? I mean, seriously, there's ton of meds out there to help with that...why aren't they putting you on those? Man, it hurts the bum when ya got the runs! I'm cheering for you and really, seriously, believe you can do this.

Standing in the Rain said...

yay for the no nose-rapage anymore, but boo's on the possibility of tummy-rapage. i'm with jb...why not first fix the diarrhea issue? i mean, if they can. sometimes bodies just suck, huh?

oh, and is it weird that i think you kinda look like those dolls in your picture on this post? (i mean, not in general, but just in this picture)

brie said...

I think the diarrhea is a combo of intestinal issues/anxiety/Boost. I take meds to help but it still hangs around.

jana bananas said...

Dearie, I don't think you're going to see this weight gainage that you need (and your team is demanding) if you don't get this diarrhea problem under control. Having a tube won't *stop* diarrhea. It's giving you extra nutrients but that doesn't mean your body will start absorbing them better.

Have you seen a gastroenterologist? (Or as I like to call them, guts and butts doctors)? Because I think that needs to be your NUMBER 1 thing right now. If you don't get a handle on this, I don't see you gaining weight or regaining health that your team thinks you need. I'm really, really surprised that this hasn't been more of a focus.

Jackie said...

I agree! I think there is something wrong internally with your body which makes it unable to gain weight. I don't think your lack of weight gain is a result of you not eating so I can't see how another tube would help? Have you tried seeing a gastro-whatever doctor?

Hang in there - I will call you when I get home from Portland. xoxo

Krista said...

I have never heard of those dolls before. I used to collect porcelain dolls when I was younger, but then one night I had a dream they came to life and were attacking me so I wrapped them up in newspaper and shoved them in a giant box and they still sit like that in my parents basement.

Sorry about the tube suckage and stuff. I think the butt and gut doc might be a good idea too.

Zena said...

Those dolls were cute in a scary creepy kinda for the peg well geez I dont know allot about it but it sounds terriably invasive...I mean geez you are doing everything you can...I think more then a week or two is warented before they make that decision...just my 2 cents...

love, Z

tawny said...

Yes I agree that today is AWFUL! I just want to start over tomorrow. Good luck with everything..that's stressful. :( BTW, those dolls look like YOU! LOVES~

Krista said...

Is you D from CFC? Just curious.

zubeldia said...

oh baby, what a hard situation. It doesn't seem to end for you, Brie, and I'm so sorry for that. The ed has reaped so much damage on your body and I think that, now, it's revolting against you... including all your attempts to repair and to recover fully.

I don't think any of us are here able to say what you need, but I am guessing that the mal-absorption is inextricably connected to your year of having an ed, and I could just cry for you knowing how much you want this to be over; and here you are, trying with all your might, and it's STILL not enough.

Sweety, i'll be honest and say that my first concern is your longterm health. I feel very strongly that to fully restore your life you'll need to be FULLY and physically health restored. Yes, that means weight gain. I wish it was happening more quickly for you, I wish that the peg was not something you even had to consider... but, right now, I'd say that it's certainly not the worst thing that could happen. Your life is worth saving. By life I mean a FULL life... None of us can know how your malnourishment is contributing (possibly) to your anxiety and panic, not one of us can know the myriad long term effects of not having enough nutrients.

So, whilst I of course would never want this for you, I really know that you'll be able to contend with it. You're a strong woman, brie, and I know that however hard it is you'd be okay.

I know that I'm probably a lone voice here, but I really and truly believe that IF this happens it could be helpful to you. All that said, I hope, hope, hope your body starts to absorb what it can.. and to my mind I'd imagine the diarrhea is a side-effect of the mal-absorption and I imagine that that is connected to years of severe anorexia.

I'm loving you, Brie, please know that even though I don't always comment that I am here.

Love Z

Kyla said...

I haven't commented earlier because I've been thinking about this. I couldn't have worded it better than Zubeldia. While I certainly don't want this for you, I really believe in doing whatever it takes when it comes to EDs (easy for me to say, I'm not in your position), and the malnourishment could be causing your panic, aggravating your allergies, etc. I know you ARE eating, but your poor body has suffered so much and so long that it's not working out...and I don't think you can have full health without weight restoration, getting the blessed period back, etc.

Honestly, I'm often disappointed in your readers who encourage you to ignore what your doctors suggest. As much as I want to be your friend and support you and agree that sucky things should never happen, I am not a doctor, and I imagine a team that specializes in ED to whom you've told everything knows more about medicine than I (we?) do.

I hope I haven't upset you. Believe me, I don't want this to happen, but I'm just saying, maybe consider it? I know it's a huge cost and scary and painful and all that, but what are your options?

I hope this doesn't make you mad. I'm just concerned and want to be honest, especially when so many people are telling you to screw what your D says.

Stacy said...

I am glad you are doing well and putting forth so much effort.
I just pray for your health and for life to ease up on you.

and like Krista said, how about a GI doctor. Do they know your colon is working? I mean that is where the vast amount of absorption takes place?
Thinking pegless thoughts.


Stacy said...

I am glad you are doing well and putting forth so much effort.
I just pray for your health and for life to ease up on you.

and like Krista said, how about a GI doctor. Do they know your colon is working? I mean that is where the vast amount of absorption takes place?
Thinking pegless thoughts.


Brooke said...

As I said before hang in there. I'll pray for you...and I do enjoy the dolls also..very you!

brie said...

Thanks Zubeldia and Kyla. I appreciate both your comments very much.

Talked with the T today. No PEG unless it's medically necessary. Which is sitll definitely a possibility but I'm just going to chill and cross that bridge when I get to it.

jana bananas said...

Briester, get thee arse to the guts and butts doctor!!!

Kyla said...

SO glad you're not upset! I think that's a good idea - chill and wait till you get there. In the meantime, stock up on Ben & Jerry's and call all the girls to come over for a weight gain party. jk... I'm thinking about you for reals, though, don't forget. Write me if you need to.

jana bananas said...

I hear Seroquel's great for some quick weight gain... oh, and maybe some Remeron? ;)

Kyla said...

maybe in addition tot he Seroquel and Remeron, you could get all kinds of implants and grow your hair long again? (you know I'm kidding, right?)

jana bananas said...

OK, to clarify since I probably seem like a reader that is telling you to ignore your treatment team...

I'm just saying... this is very drastic/dramatic. And that I think a lot needs to be considered first. And that other things need to be addressed before a pretty hardcore surgery. (I've heard it is pretty bad.)

I'm sure your treatment team isn't out to get you! Sometimes I think they seem a little over reactive, that's all. But that's because I've also SEEN you and how much you're doing. And you've had a lot of hardships, that's fo' sho'.

I miss you like crazy.

licketysplit said...

This does seem to be quite the conundrum (kə-nŭn'drəm- A paradoxical, insoluble, or difficult problem; a dilemma) hehehe...I like that word. It just doesn't seem fair that even when you are doing EVERYTHING you possibly can, at times it seems it just isn't enough. I wish I had something to say that might make it even a little bit better...I'm thinking of you :) Also, I absolutely luuuuv your hair in the pic!

Kyla said...

ditto on the hair love

Laura said...

zubeldia says it best.
But you know that


kristin said...

No tube after all!?! I'm glad! I am sending you heavy and good thoughts, Brie. If I could, I would send you my excess weight!

Take care! Hang in there!

love, kristin

Heth said...

Just out of curiousity, and you don't have to answer this, is your treatment team all from CFC? Or are you working with different people now? Is M the lady in that separate building near the center (up closer to the road?)...cuz I saw her and JC and her both at the same time for a while...I'm not sure what I thought of M...she was just hired and was still working on her MA or Phd. when I was working with her.

Anyway, just was wondering.