Update

   Today has been an emotional day and yet I still feel so blessed that I avoided a hospital admission during Christmas. Damien still didn't quite grasp the opening presents part of the usual traditions, but he truly loves playing with all his new toys and that makes me so happy. I almost missed it after collapsing again the other day and being rushed to the hospital in need of fluid and potassium but they got me through until today. Now onto the medical update.
   Our day began visiting IR for them to look at my port. It accessed perfectly, but the doc said he thought it was too deep and not ideal for me and has given the reccomendation for a hickman line. After that Josh wheeled me around the hospital trying to kill time until our primary doc appt. When we finally got called back they discovered my wt had dropped quite a bit in the last six weeks, they didn't tell me of course because it is still a trigger but it was concerning.
   When my doc came in he had to lay out our plan. He will be talking to GI and general surgery attendings and the current plan is for me to be admitted from my surgery appt tomorrow to begin TPN. He said even though my labs weren't horrible yet I look really bad and it has ben six wks with barely any nutrition so it is time to do this. He said their protocol is for me to be admitted and stay until they can get the mixture just right to keep my levels safe. They are going to pull my port and replace it with a hickman line. They couldn't even draw blood from it after my clinic visit. He said I will have to go through a whole new battery of tests to see if there is anything we can do for the j-tube and save me from the consequences of TPN. He said this hospital stay will be tough but necessary. I asked if he would be able to call first thing in the morning and let me know if I need to come in ready to stay for awhile and he said just bring everything like you are for sure staying because we are out of options.
   Transplantation came up again and he said we aren't there yet and hopefully can avoid it for awhile longer. That kind of burst my bubble because at first he was so hopefully we could find away through this and now I am suppose to begin preparing for transplant sooner rather than later. For now I am just happy they are finally going to get my strength back up. He said the TPN will make me feel better and the gut rest is prob the best thing right now. I could tell how discouraged he was to have to bring TPN back into the picture, but I feel safe with this doctor.
   I was able to be honest, I told him that not getting nutrition and the wt loss was very triggering. I assured him I wasn't going to relapse I just have been having those old thoughts creep back in. To my surprise he was super understanding and said that it is normal that this would be a trigger for my anorexia. When I started crying and apologizing for being difficult he reassured me that I was strong and the disease was difficult and for some unknown reason we just can't find out why my intestines won't work.
   I feel defeated and relieved at the same time. I'm terrified of the liver and sepsis complications that we will bring with TPN, but to have the energy to be up and around and not curled up in bed is what I truly want. We can avoid the ambulance trips every other week for fluids and electrolytes, and above all else I can get my quality of life back. I am so happy they are pulling the devil port and putting in the hickman, no more three tries to get the needle in or hematomas from fluid in the tissues when they miss. I feel like we finally have a plan and that is the most important thing.
   Being sick has given me a whole different view on things. I now see how important everyday is, spending time with my family and mending old wounds. I feel like I am full of a renewed sense to fight. I might not have fifty years or fifty days, but I'm going to keep pushing through. These last few months I have been so scared and everything seemed so up in the air and now we have a plan...which is more than we had yesterday. Life is precious and I wish I could go back and tell that to my younger self who couldn't see past the starving, purging, cutting, and overall self destruction. I will fight for my life, I won't be ashamed of being sick anymore or try to hide how I truly feel. I now know I am not alone and I have people who love me. Thank you to everyone for their love and support because it means the world to me.

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.