I'm sorry

Okay let clear a few things up... I'm sorry doesnt mean SHIT to me anymore! My mom always said "Sorry doesn't cut it." I totally understand now and agree with her 1000000%

Say it as much as you want in all the languages you want and buy me balloons that say it I don't care it doesn't affect me anymore... I hate that saying.... If you screw up don't say it to me... I don't believe you anymore... Here's a few examples:

"I'm sorry your liver is dying" (NOT DEAD YET!)

"I'm so sorry to hear your story" (NO YOU AREN'T... YOU JUST THINK IT'S UNFORTUNATE... THAT'S WHAT YOU SHOULD HAVE SAID!)

"I'm sorry you have to go through this" (Okay... I'll make an acception... This one I will accept)

"I'm sorry I always ruin a good thing" (No you aren't or you wouldn't do it in the first place... GOSH THINK BEFORE YOU ACT!!)

"I'm sorry" (NOT TRUE!)

"I'm sorry your dying of cancer" (DIDN'T DIE!! STILL ALIVE AND KICKING!!)

"I'm sorry you'll never walk again" (I'M WALKING... TOOK ME A LITTLE WHILE BUT I AM WALKING!)

"I'm sorry you'll never breath on your own again" (I'M ALSO BREATHING... ON MY OWN!! THANK YOU VERY MUCH YOU LITTLE LIAR)

"I'm sorry your daughter wont ever remember you" (I REMEMBER MY PARENTS... IT TOOK A LITTLE WHILE BUT I KNOW WHO THEY ARE NOW... MOST DAYS)

"I'm sorry that we couldn't find this sooner" (YEAH ME TOO SO STOP APOLOGIZING BECAUSE YOU COULD HAVE ALSO ACTED A LOT SOONER!)

"I'm sorry for your loss" (YOU HAVE NO IDEA... This one isn't awful because I'm sure people really do feel bad that you've lost someone but in some situations... NO!)

"I'm sorry... I'm so sorry" (THE DOUBLE APOLOGY IS UNACCEPTABLE... IT WAS EITHER UNFORTUNATE OR YOU JUST F-ED UP SUPER BAD AND CAN ONLY SAY I'M SORRY TO TRY TO MAKE IT BETTER AND IT DOESN'T ANYMORE!)

The only sorry I like is "I'm sorry but I can't help you!" THANK YOU!!! You can't help me that's right! If you can't help me just tell me or John! That's all we want to know... we will stop paying you boo-koo of bucks for this advice that isn't helping us!!

Was this a pointless post... yes maybe... "I'M SORRY"... but I had to get it off my chest and I feel so much better now!!

Just one more plea before I go:

SOMEONE PLEASE SAVE JOHN!! PLEASE!! I DON'T KNOW WHO I NEED TO BEG OR PAY OR WHAT-NOT I WILL DO ANYTHING!! JUST PLEASE PLEASE PLEASE SAVE HIM!!

I always loved hospitals

Seriously I have a thing for hospitals... call it a crush or just plain ol' love.

I've ALWAYS loved hospitals! I've been in a hospital about 3/4 of my 21.75 year life and I wouldn't trade it for anything. It's not my illnesses that I've loved (see below for the list of things I like), no, its the nurses and the doctors and the oh-so-comfortable beds and the fact that I am in a hospital and safe and if anything happened to me I would be okay because people were right there to save me!

Don't get me wrong... I still have a "thing" for hospitals... but it's fading. I still love the beds and the food and most of the nurses and most of the doctors. But, I don't love hospitals anymore and I don't feel safe in them anymore and I don't want to be there everyday like I use too! I don't want to go to the hospital in the morning with John because I feel like everytime they will want ot admit him again... for a long while... or they will send us out the doors again with no answers.

We have answers... We know he has hepatitis... We know he has fibrosis and cirrhosis... We know that this is what will end up killing him... And we know that there is only so much we can do by ourselves before we have to cave into all the pressures and admit him to the hospital and put him on life support...

I've been on life support before... actually a few times... and for a long while each time... It doesn't matter to the patient... I was in a coma... I don't remember... I know he wont either but I know that it is torture for the family to sit at their loved one's bedside and watch their vital signs crumble and be nonexistent and see the nurses crack ribs because of the CPR compressions... I know that it's traumatizing... my family can't talk about what happened to me and they cant even look at the pictures that they took to chronicle the whole experience! It's traumatizing... I realize that and the last thing I want is to see John hooked up to all of those wires and tubes and to realize that he might not wake up and he might not breath on his own again if he does.

I just want a liver... anyone's liver... SOMEBODY JUST GIVE HIM YOUR LIVER!!

SOMEBODY JUST PLEASE SAVE JOHN!! PLEASE! PLEASE!! PLEASE!!!

It's the list of boredom!

Things I like about hospitals:

• Good nurses, Good doctors
• Chicken Noodle Soup in the cafeteria!! DELICIOUS!!
• Hospital beds... people think they are so uncomfortable but I LOVE them!! I think they are the most comfortable thing ever!!
• The fact that I can sit around or walk around all day and nobody questions me if I have anything better to do!
• Seeing John smile when he feels better
• Seeing John happy when the doctors and nurses make him laugh
• Seeing John get better (sometimes)
• The excellent staff that just loves us SO much! (I love them too!)
• Food from the cafeteria... some of it isn't as bad as people make it seem!
• Nurses that actually get you what you need, when you need it! LOVE THAT!
• The family shower! IT IS HUGE!
• The fact that nurses become your friends... we love new friends!
• Getting to spend all that time with John
• The Gift Shop

Things I hate about the hospital:

• The smells... I can't even explain how bad it is sometimes...
• The mean doctors that don't give a flying F&%@
• The mean nurses that don't want to help you
• John getting worse
• John crying
• John never smiling
• John's pain
• Tests that take 9x longer than they are supposed to
• Neglecting my homework and the rest of my life
• John sleeping the entire day and then waking up to say that he is tired or in pain
• Things I can't afford in the Gift Shop that I really want
• The cafeteria food that makes you gain weight like woah!
• The smell... again... sometimes it's so bad it has to be on the list twice
• All the other sick people that make me feel so bad
• John being sick
• John's liver dying
• All the people that feel bad for us because we pretty much live in the hospital... Don't feel bad... we don't mind it so much anymore
• The worst thing: SLOW REGISTRARS!! I cannot even explain how bad this is... people who are slow getting his name and info into the computer make me so mad!! SO MAD!! I cannot even explain why I get mad but it makes me so mad I just want to jump the counter and do it for them!!

Oh Liver... You're Killing Me Too!

These last 2 days have been torture and for some reason I don't see tomorrow as being any better. My nerves are shot and I feel like crying when I even hear anyone talk... literally anyone. I went to Walmart the other day to pick up some goodies to cheer John up and obviously there are a lot of people there... talking. I got all choked up and had to just run and grab what I needed and leave.

I will say that even though I feel like I am about to crumble into a million little pieces that are impossible to reassemble... I haven't cried and I haven't let John know I'm sad! I think that's an A+ on my report card!

Sometimes John will joke and I will "laugh" but it isn't a true laugh and I am glad that he hasn't caught on yet... I think it's his ears. His ears are so bad and just getting worse and I don't think he has much of a chance to keep all his hearing if we don't get that checked soon.

He is in constant pain and I feel so bad for him... Now it's rubbed off on me... I feel like I have all this pain all the time but it's not like an organ failure pain like his... Mine's so emotional and mental and maybe physical too just because of the exhaustion.

It doesn't make sense how so many people can battle diseases and even worse diseases then John's (I guess that might be a stretch) and they are fine... 9 doses of chemo in a week... Their fine! WTF!!?? John has to lay there and get worse and you get poked with a needle a few times a week and are all better!?!?!?!?!!??

I don't get it... I am just so sad right now I don't get anything!

SOMEONE PLEASE SAVE JOHN!! PLEASE!!!!! =...(

When do I get a break?

I know that this whole ordeal isn't about me but I need a break! I am so exhausted that I am having trouble doing everyday activities!

I don't want to sound selfish and I know that it will come out that way so I apologize in advance! John always gets to lay around and veg and complain because his liver hurts and his kidneys hurt and yadayada hurt... When do I get my chance to lay around and people wait on me and listen to me complain 24/7!?!?

I have 3 tests next week and they aren't regular exams there like make or break my grade exams! I need to study and I need to have time for me! I want to be with John all the time but maybe sometimes we can focus on what Julia wants and not "All about John Time."

I'm sorry to be so rude about it but I have a hard time with all of this too! I'm sad too and I want time to grieve too! Oh well... I guess the time will come when I will have plenty of "alone time" and time to grieve... I just hope that doesn't come too soon! =(

Someone save John PLEASE!! =..(

I don't even know where to go from here!

I don't have anything to say really. I feel like venting but can't even put it into words.

I just want to scream and cry and everything in between. John's getting worse. We both know it, and in our own ways try to accept it but we can't!

Today he started crying and I just wanted to break down and cry too but at least one person has to be strong for the other!

His pain is constant and it is all over! He has constant pain in his abdomen (for his liver and the GERD), his ears hurt because he can't seem to kick ear infections no matter what they give him, his legs hurt for some reason they can't figure out and he has pain in his head. "Soft spots" are what the doctors call them but they wont do any kind of diagnostic test to see if it's something more!

They always say listen to the "mothers intuition" and I'm not John's mother but I can have an intuition too and I just know something more is wrong. Maybe it is related to what his God awful liver is doing to his body but it's not just from the hepatitis.

Why won't the doctors listen to us?? We have the nurses on our side and now we just need to doctors too! WORK WITH US HERE!

Bills keep pouring in... Today we got 3 and it looks like one's we have already recieved for his liver biopsy or EGD but he's had so mant of those and so many blood tests that we can't even keep it all straight. The only good thing is that his dad and step-mom (even though they live a little bit away) try to help us as much as they can with the bills. Sometimes it isn't enough but we get by.

On a happy note: John's meds have been working SUPER good the past couple days!! The pain is still there and today his eyes looked nasty yellow... (I think they are getting worse) but there was less nausea and diarrhea the last couple days!! I thought that was fabulous news!! He can't have any more Imodium for his diarrhea though because supposedly that's bad for his liver. Everything we want to try as an OTC seems to be bad for the liver! OF COURSE!! John had to get the disease that affects one of the most important organs!! Why couldn't it have been appendicitis?

I have read some "personal stories" of people with hepatitis and cirrhosis that say that the surgeon went in a cut out one of the lobes of the liver and let it regenerate healthy tissue! Well, F&#@, John's liver is much too far gone to do that! Some people are so lucky sometimes. I hate to think about someone dying so that John can get a liver. It's a terrible thing to lose a loved one but I want John to live!! We are both 21 years old and we have so much more life to live and I want to live it with him!!

I'm going to cry... More later!

Love,
J&J

I hate the Liver

I have no really good reason today to hate it... I just hate it everyday of my life.

The more yellow John gets and the more it hurts him and the more he suffers from it I just hate it that much more everyday!

It's been a year now since we started this "journey" into Liver Land and it is exhausting! I feel awful now that I look back and think about this last year... I should have noticed the jaundice and ascites... I just didn't see the subtle changes until it was one big cluster and much too late!

Doctor's make you feel guilty for not coming in sooner! All of them always ask us why we never came in sooner! WE HAVE BEEN TRYING!! We fought with doctors for 1 year before we found our team of doctors we have now that are trying to save him! And, the first thing a doctor says to me is "Haven't you noticed the changes in him? Ususally it's the significant other who notices it first!" Oh great buddy that's all I need is more guilt! Thanks a friggin bunch!

John has always had a sense of humor even when it is inappropriate but of course that's why I love him. He makes some of the awful times at the hospital really fun! Which seems kind of awkward to say because people think we should be morbid and depressed and crying all the time. When the doctors (the interns and visiting doctors) come in and ask John why he is there he jokes around and says he is as healthy as a horse! We both start chuckling and the doctor just kind of stands there like he has no idea what to say next which is pretty funny! Some of them understand that he is joking and joke with him (especially all of our friends in the GI and Radiology departments)!

It makes it much more bearable to be in the hospital when you can joke about it! Even though it is sad and we kind of try to forget about the illness I have read somewhere that that can be theraputic! We try to make it aas fun as possible! Sometimes pain and thousands of med names and treatments can be overwhelming and not fun but anytime we find fun we take it and run with it! I have learned that nurses are really funny sometimes and can make it 10,000 times better to be in the hospital when you get a good one! Doctors need to pick up on the sense of humor that is in the hospital!

My dad has been sick all his life too and both he and my mother always ask us how we can stand to be in a hospital all that time and not go crazy and we can't really explain it but it's fun to a certain extent! Might seem crazy... as this whole post might just seem a little bit out there! But really? Why not make it fun? Why not enjoy life while we have it? Maybe there will be a miracle or something and we will have more time but right now... now that we know our time will be cut short we have to enjoy it as much as possible and take every chance we get to make other peoples lives better too!

Thank you to all the people that have touched John and I's life... the doctors, nurses, housekeeping, dietary, nurse aids, friends, family, everyone!! You have changed our life, some for better, some for worse, and some of you have made yourselves part of the family and circle of friends! We will never forget youand everything you have done for us that you didn't have to do! You have all put in man hours that you will never be able to get back and some of you don't even get paid for doing things you do for us! We love you all and if we could find you again and thank you again personally we would!

Much, Much Love
John and Julia

Liver Disease is a little jokester!

You might think that liver disease being a jokester is a bad analogy... but it's EXACTLY what it is! Such a good way to explain it! I'm so over being really upset about liver disease the little joker...

Please let me explain my analogy... Okay so our little jokester friend... the liver likes to play tricks and pranks on people... One day you'll have "highlighter" jaundice and then the next you are a pale yellow color... and one day you'll have terrible ascites and then the next day for some reason all that fluid has magically disappered but it's back a few hours later! That little f-ing jokester!

I hate the liver so much! It makes me so mad I could just beat it up but since it is in my boyfriends body I don't really want to beat him up! The little jokester gets on my nerves... I just wish getting a liver transplant was easier than it really is. Whenever I talk about liver transplants with other people they have a very weird way of thinking and think that it's okay... there's plenty of livers out there just waiting for John! WRONG! They don't stockpile livers! There aren't huge factories and freezers that have reserves of livers for O-Neg blood types. Which is another HUGE thing that sucks is that John is O-Neg and of course they can give blood to anyone but can only recieve from O-Neg! Come on all my O-Neg friends! Sign up to be an organ donor.

I can't give him my organs because of my illness but I would love it if someone could!!! John's little jokester liver is running out of funny moments and now he is becoming very depressed and in need of some cheering up or a side act... like a new liver... to help him out!

Studying (about the liver)... More later!

<3
John and Julia

Dr's. Are Liars

Ok so maybe the title needs a little explanation.


Dr's Lie... that's pretty straight forward... I think they tell you what you want to hear not what you need to hear... Let us know were dying... Let us know there is nothing we can do for this disease... Tell us what we need to do to beat this and if there is nothing tell us that too...





Ever since John got diagnoised the doctors read his chart and just look at us and shake their heads and then continue to say that it is going to be alright... Okay... hold up!! I just say you look at us like you were clinically depressed obviously we know it isn't good news! We've done our own research. We've seen that there is no treatment for his disease... Please! Don't tell us he'll be fine. You are only making it harder to watch him die because we think there is something else we can do! Sometimes I feel like I need to remind the doctor that we aren't little kids and we don't want/ need the sugar coat treatment! Tell me how long my boyfriend has to live and tell me the chances of him getting a liver before his dies and it would be FANTASTIC if I could find someone that could explain to me why this happened to him!?!?



So I saw this picture and I think it's perfect... I'm sorry if it doesn't come out very well but I don't need people to see gruesome pictures of a dying liver... I just want to hand this picture to a doctor and ask them to tell me where John is... obviously it's somewhere between the fibrosis and cirrhosis but since there isn't a picture there what exactly is his liver looking like right now?

I love John's doctors... So far they have saved his life by actually figuring out what's wrong with him but now they are sitting on the bench watching us fight the good fight because our team wants to win and they refuse to cheer us on! I could put a HUGE line of curse words right here but will hold my tounge... for now!

More later I'm sure!

<3
John and Julia

Maybe a small update before I fall asleep.
John and I were laying in bed and since he is always warm with the hepatitis he didnt have a shirt on and I was laying next to him and had my hand resting over the lump on his stomach were his enlarged liver is protruding... Gross... Anyways, I have sort of good news...

He acknowledged his jaundice!! YESSSS!! That counts for something in my book! He never talks about it... refuses to see it. He is "highlighter" yellow yet but his stomach and face and eyes are getting there. He looked down to put his hand on mine and said... "Man, my stomach is getting more jaundice!"... Okay I'll admit it's not the best thing to say b/c it only means he's getting more sick but I think its fabulous that he admitted it today!

Maybe he wants to fight more and more each day the madder I get... haha... I was so mad this morning about all of this and I think he finally recognized it! YESSSS!! Everytime I think about him acknowledging it I can't help but get this huge grin on my face!! =D

Anyways, Goodnight world. We shall talk again soon!

<3
John and Julia

Happy Valentines Day!

Yeah great Valentines Day!
John's sick.
No Valentines Day for us.
We'll just sit home and he'll be sick and I'll watch sad movies.

It's 2 p.m. and he just woke up... JUST WOKE UP!! I have been skulking around the house since 7 am this morning and he gets to sleep in and then he makes me feel like the guiltiest person ever because he'll wake up and sound like he's crying and say that he had to sleep in because he's sick! OMG!! I'm sick too! I have chronic pain and nothing (not even Percocet and other combo drugs work)! I get up in the AM and I deal with my pain and my illness and you can just lay there and rest all you want? Ummm... NO! not fair!

Am I allowed to be sad too with this diagnosis? Does that make sense to anyone else besides me?? My boyfriend/ bestfriend is DYING!! DYING!!! and he acts like it is him against the world! I have been there this entire time through every test and every hospital stay and labs and just EVERYTHING else you could ever imagine that goes along with illnesses!

It breaks my heart that he is dying and I can't do anything for him... I don't know a lot and I can't say I've ever been smart but if I know 1 thing it's that I can't live without him. I will have to live without him someday and right now I can't face that but I think about it everyday... it is a constant thought... and it makes me sad!

I think I'm entitled to a little bit of sad time! I don't dwell on anything usually but how do you not dwell on something that will always be there and you will always be fighting with.

Stupid liver... Happy Flippin Valentines Day

I hate the Liver

I really do hate the liver.
What an awful organ.
It's ugly and I wish we had something more reliable in our bodies to filter waste.
And where the F*$# did liver disease ever come from? Was it God's plan? Yeah really good idea you had there God! F&%@!

I feel so bad for parents who's kids are sick with any kind of disease... especially liver disease. It is the hardest thing to watch someone you love so much dying. And especially in my case, watch them give up! He was always such a fighter until we got the diagnosis and now he thinks he is going to die in a couple days or weeks! He has completely given up. He has a little fight and spirit left in him but it doesn't come out often enough!

Our next appt. is March 3rd and he is such a quitter right now that he might not make it to that appt.

He doesn't realize why fighting is such a big deal to me and even when we fight about it or I talk to him about it he literally sits there and is completely devoid of all emotion like he doesn't want to hear it! I can't make him fight. I'm fighting too... I'm sad too! Maybe that's wrong maybe I'm not supposed to be sad but I am b/c it's like I lost a part of myself too with the diagnosis.

=(