Fighting the unthinkable

   It has taken me a few days to get up the strength to process everything and share it on here. To be honest, I considered not saying anything at all but after talking to Josh we agreed that if we are going to keep up this fight there is no reason to hide the battle. It is no secret that the last six months my health has been going downhill much faster than anyone could have hoped. On Friday we found ourselves in the ER at Barnes-Jewish Hospital dealing with the usual tube problems. We expected maybe to be admitted again or the usual discussion about switching to a bigger tube etc, but that was not what we heard.
   The attending surgeon came in and told us he had some unfortunate news. We had thought all this time that we simply lost this tube site and it would need to be put in fresh intestine and all would be well...wrong! The doc told us the excessive drainage is because the rest of my intestines have become so diseased they are barely still functioning. He went on to say our options are running out, this tube site will not work for feeds and is so painful they added an additional pain med while they figured everything out. I was given the option of being admitted for the weekend and kept on PCA dilaudid or waiting until Tuesday to come back while they looked over our options. I made the choice to stay home and enjoy time with my family.
   They spoke to us about what we are facing. They would like to start fresh with a whole new panel of tests, discuss our short and long term options, and basically prepared us for the unthinkable. If we decided to go with pallative care I won't see past five years and that is lucky, if we made the choice to fight there are once again no promises. We have obviously picked the second option, I'm twenty six years old giving up will not be an option. Re-siting is a band aid and will maybe buy us another few months on tube feeds and they are concerned about the safety of another site. The dieticians have declared TPN as our saving grace while the docs only see someone who has been unable to avoid blood infections without the sugary TPN helping them along. They said TPN will obviouslyy have to occur if we decide to leave the tube off the table, but reminded us sepsis is unpredictable as is everything else. They are looking into more surgical options, but we've had to face the fact that transplantation is on the table.
   We are now facing the unknown, don't get me wrong we have never been in denial about this disease this is simply the first time they have flat out given a life expectancy. I'm scared, scared of so many things I can barely express them. The pain is unbearable sometimes which they assure us is one of their main priorities. I want to scream and yell like a two year old, I have so many emotions right now. I'm scared of more procedures, terrified of transplant, and horrified I will have to be away from my son. Damien and Josh are my everything and keep me going when the pain convinces me I'm too weak to go on and being away from them is like having a piece of me gone.
   I have no intention of giving up, I do not believe in limits. I will endure and do whatever it takes and I WILL SEE MY SON GROW UP! I've prayed and yelled at God, I won't go quietly and I won't let this disease win. It has taken me a long time to find myself, to find that I do have a fighter and survivor in me, and I know I was made a mommy for a reason. I'm not a liar, I will probably complain and cry about pain sometimes, but I won't stop. I have friends who are fighting this same battle and worse and they inspire me everyday. I am reminded that we have a purpose and we are all survivors. I'm scared, but I'm not a quitter. I beat anorexia, I put down razorblades, and I've done the impossible...I will do it again. My job is to be a mommy to my son and wife to Josh and that is not changing sick or not. Like I've said before...I am down but sure as hell not out.