I’m not a very happy camper. It all started last night around 11:00 or so. I was totally asleep on the couch, (probably pretty comatose, I was sooooooo tired) and Bran was next to me watching Season 3 of Lost. My tubage was hooked up to the supplement, and it was dripping away, as always. Suddenly I shot up, legs akimbo, arms flailing, and started coughing the Dying’s Cough. I was hacking and spluttering, and I couldn’t figure out why I couldn’t get air. Well, finally the fit passed, and I zonked back into my Zzzzz’s. Well, it couldn’t have been much longer after that, when a coughing fit seized me again. I’d never coughed like this, I couldn’t figure out what was happening. The burping and retching and choking...the Boost in my throat…it was hard to catch a breath…and then it hit me: SHAZAM! The tube had migrated from my stomach to my lungs. So all that lovely supplement was being leaked in some vital organ that it was so unwelcome in. Was I absorbing these calories? Where did they go once I coughed them up? Back to mi estamogo? I know not. Once we figured this out, though, Bran immediately turned it off, and I felt better.
I twisted and pulled and pushed the tube around, and I hoped it was back in my stomach. Well, today’s been weird. It’s been hurting me even more than usual, making me cough and sneeze and talk funny and be short of breath. I thought, suck. It’s probably in or near my lung(s) again. So on my break I took a grocery bag with me into a stall, tugged a little, and it sort of just slithered out on its own into the bag. And I feel amazing!
But it didn’t take long for the amazingness to wear off, and guilt replaced it. What would M and H (my treatment team) think and say about this? I was already concocting all sorts of reasons why I didn’t need the tube anymore, and I let myself build up an irrational hope that they wouldn’t replace it. So I paged H, and she called me back, and the home health nurses are coming tonight to put it back in. She called me at work, and I fled to the bathroom to cry.
I’m just so sick of this.
The world HATES me.
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- brie
- Utah
- Mom, wife, reader, writer, and napper extrordanaire. I think Ed sucks and life rocks. If you read my blog, you will find a fruitful abundance of evidentiary support regarding my neatness factor. It's pretty intense.
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38 comments:
I certainly bet you're tired of this! I sure would be. I know you know, though, that you need the tube right now, and that eventually it WILL be taken out for good. You're being so brave, and so strong, and I really admire that. I love you!
call me....
Brie, I'm so sorry. I don't really know the words to say but I know you can do this! You're awesome.
Aww, that sucks. That really sucks. And is scary. I wonder how it did that.
So, do you know how much longer you will need to be tubagized? Totally tubular? It sounds like it's doing its job at least. I look forward to the day that you can take in Boost or something on your own so you don't need the tube any longer. That will be a cool day! I'm sure you will celebrate. I'd totally want to go to SLC to party with you.
You know that I think you are amazing! Hang in there and know that I have got your back.....If you need anything, you know where I sleep.
Love Always,
Whit
Oh Brie, how painful and distressing. I'm so sorry, love. You're so brave, as others have noted, and what you don't often write about, hiding behind the humour, is all the suffering, physically and emotionally, you endure on a day-to-day basis, and how hard it is to keep going, because none of this is easy. I wish I could sit with you and hold your hand while you go through all of this, but just know that I am thinking of you.
I got your email.. phew. I will respond as soon as I can (I have a tummy ache myself).
love to you, Brie.
Z
I seventh what everyone else said. I'm so sorry you're having to go through this pain, but I fully support you. I think you're doing the right thing. Love, Kyla
You're right, Z, I too entirely hide behind humor. For me, life got hard, so I got funny to deal with it. And really, I think that's okay. But my T and I talk a lot about me finding a balance, because life isn't always funny. Sometimes I think about trying to post something that's stripped of humor, that's just real and honest, but I don't know that I can. It makes me feel too vulnerable. Will people even want to read it? What will others think if they do? How can I handle so much of my pain out there, with no humor to hide behind? These are things I'm not sure I can do. My T has encouraged me to write a blog (she knows about my blog and loves that I do it) that is maybe just my feelings...nothing funny. Every once in awhile she can get me to write a piece that's just real, no humor. She said those are the times, through my writing, that she can really see who I am most. Ky, I know you've read some of my vignettes and things that are not funny...so we'll see. But it scares me. :/
It is so hard, and I think it can sometimes be harder when those who know and love you are reading. WHen I first started blogging I think I was much more honest, and much more real with what I was feeling, but my husband reads my blog as well as some friends, and many of my readers have become good friends.. and for me, that has sort of had me retreating. Not completely, though.
I want you to know that I would read, and I would want to see other aspects of you - and that includes your hysterically funny side, but also your hysterically sad side. So much suffering, Brie, and if you can form some words, I will listen.
Love Z
Well, now there are some complications. Aren't there always? My dietican just called me back and told me that home health can't come to my house anymore to place the tube because my insurance won't pay for it since I'm mobile and not on bedrest, so the need isn't urgent enough. So she told me that I needed to go to the ER where she works and they'd place it, and she'd be there to tell them that it was authorized, etc. Well, I just got a vmail from her, and she said there's some problems, and that I need to call her back so we can figure out what to do. I've tried calling back, but she wasn't at her desk. So now I'm worried. I hope she's not going to admit me. I'm sure that's not the case, but naturally, my mind wanders to the worst case scenario. Suck suck suckity suck.
Thanks, Z. "Hysterically sad side." I like it. Doesn't it fit? ;)
Brie, I can tell you are having a hard time with this even with all your humor. I genuinely wish you the best and I hope you can get feeling better. I know you already have many friends to support you out there, but I will email you my phone number in case you ever need another listening ear or text buddy. I really think you are an amazing person!
I am so sorry Brie. I can't even imagine how difficult this has been for you. Good news? You immediately called your treatment team - that shows how committed you are to recovery. You are amazing!!
I know you're hurting Brie. You're hurting a lot. It's evident behind the humor. And I want you to know that I would read the raw, painful, sad entries just like I read the other ones! I'm here to support you through EVERYTHING, not just the funny times, not just the good times.
As someone else pointed out, I think it is a good sign that you called your treatment team right after it happened.
I hope your nutritionist doesn't make you go to the hospital. I actually didn't know they could admit people into the hospital? Interesting.
Hope everything gets straightened out soon.
Well, she can't admit me, as she's not an MD, but they - meaning she and my doc - could. But fortunately I just talked to her, and she said that she'll allow me to go to the ER and get it done - it might not be that simple, but that's what I'm hoping for. We actually have a tube at home, and they kind of showed me and Bran how to put it in. We're going to try it first and if it doesn't work, go to the ER.
Also, I probably have to get a PEG tube now, but I'm just too depressed to talk about it. :/ I guess since the PEG is considered more long-term than this...and my D still wants me to have this for monthS, so a PEG tube makes more sense. I'm stressed though. I know that this is the WRONG thing to be concentrating on, but since I've gained some weight, I feel like I look ridiculous with a feeding tube in - like people will think I look too fat to have one. Suck.
My dearest...just wanted you to know that you're in my thoughts - as always. Love you!
That sounds so scary! That sucks! I hope that things get worked out--I know they will. Good luck. You're strong and brave and I know you can do it! :)
I am SO sorry that you're going to have to get a PEG tube. That's awful. :( At least, though, you won't have a tube sticking out of your nose and people won't stare and make comments. Know that you have lots of people supporting you! We love you, Brie!
Brie, I'm sorry that all this is so miserable. When you're ready to write a non-funny blog, I will be here to read it and offer you a loving comment.
On an unrelated topic--there isn't a rule against commenting on every single one of someone's blog posts, is there? I'm afraid you'll call (email?) the blog police and they'll put a restraining order on me!
I know how it feels. I know the tubage is annoying and hard to deal with. I am so sorry you need to deal with this. I choke a lot and I can understand the concern you must have had...especially with your asthma. I am here if you need anything...you can just email me if you need some sort of support. Hugs.
Ugh, that sounds so horrible. That's scary too. Hope you're okay.
oh Brie, I'm sorry you're hurting so much. How frightening and frustrating and worse words that I can't think of right now. And I promise you, you are not not not too fat for a tube. Your feelings are valid, but they are distortions. I can't even imagine how scary this must be. I'm here if you want to call or write. Please reach out for all the support you need.
((Brie))
I'm so sorry that you're going through this. AN is just a fucking awful condition. We'll be here for you, Brie, in any way that you need or want. And, no, you're not too fat for a feeding tube... I truly wish that you didn't need it, and I hope that you're well enough that the hospital is not needed.
Love love to you, Z
Well, it's done. Bran just placed the tube. It took three tries, and I was nervous as hell, but actually, Bran placed it better than the previous two nurses. So I'm a tube face once again. :(
Wow, Bran's got skilllllz! Good job!
Hugs.
I can't believe you have 27 comments on your blog you brat.
Hey listen, i quite adore you with your tube face so just chill okay?
You can do this!!!!!!!!!
You and Brandon are obviously an awesome team. I can only imagine that do-it-yourself tube insertion cannot be easy or fun... you two deserve major credit not only for overcoming the natural contours of the human nasal passage but also for fighting the dreaded Ed. Love you.
I just wanted to be comment 30! I think the most comments I have ever received is maybe 5 or 6 and I think some were from myself. I'm glad you were able to fix the tubage situation.
Brie Bee,
I would have been so scared if James had to come near me with a tube--especially with one leaking boost! You are braver than brave, and going through all of that just to get the tube back in? It shows the world how bad you want to recover! You are an inspiration. Yes! Comment #31!!!
everyone has said so much that is so great already. I just want to let you know I am thinking of you and I am so impressed with the major efforts you are making even with the accompaning pain. You are so awesome. Take care.
Brave, Brie.
Thinking of you, love Z
I can't get the word YOINK out of my head!
YOINK, YOINKERS, YOINKAGE, YOINKY...I can't either, for real. I'm trying to come up with a way to make another of my titles have this glorious word in it! ;)
Oh my gosh. I didn't even know that happened. You should have called, crazy girl. I talked to you about Sundance today, but nope, you didn't mention it. Is it back in then? I'm sorry, that must have been way uncomf.
Good comments from so many loving people. I ditto them all, much love to you my dear Marcus.
Clarity:
Tube is in place to ensure that you get nutrients your body needs to stay alive.
Tube is in place because you cannot give yourself the nutrients your body needs to stay alive...yet.
Your definition of fat is different than actual definition of fat.
A too-fat person would not require a feeding tube. It's assumed by their actual too-fatness that they are completely capable of (over)feeding themselves. (!)
The part I hate most about EDs is when they turn on you. This is the part your dealing with. What initially seemed like a great plan/way of life/way to cope/whatever...is now a monster to contend with. What you thought were your own ideas are now something to fight with.
Let the tube do its work (i know...it's scary and goes against everything), while you deal with/feel/hash-out/cry out all the feelings and issues that come up as a result of this.
It's a fact: So much easier to complain about, cry about, talk about fat, tubes, calories, weight, etc...than it is to find and deal with the issues and feelings that are hiding deep underneath it all. Tackle that and you can gradually reverse this thing.
Okay?
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