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