Just an update promise something better tomorrow

   This is totally a me post, really no major topic just how things are going. Went to the doctor yesterday and we decided it was time to place another central line now we, and by we I mean the doc and surgeons whether to put in a portacath or a hickman since its going to be for fluids for now until we have to switch to TPN. My orthostatic vitals were awful and I was so scared I was getting admitted but my doc let me go since there aren't any veins to access anyway until I have a line. She added another med for pain and spent quite a bit of time talking to me she says I'm her most complicated patient and she is trying to find new ways to help me because my intestines are failing faster than we expected. Sometimes it can get pretty overwhelming but I try to just focus on Damien and making him as happy as he can be.
   Been having a hard time helping my family understand this. My stepmom is really trying and close to understanding how serious this disease is but my dad I just can't get it through his head. I think he still associates everything with my anorexia and I need to "just" eat. I'm getting weaker and weaker and so much falls on Josh and I feel so bad about it. He has to deal with my moodiness and I hate that. I can't help it I just get so frustrated between the pain and throwing up and my limitations I get snappy and he is the one around...you are always harder on the people you love. He tries so hard to make me smile but I just get so upset about not being able to do everything I want to do. I want to be super mommy and have a super clean house, do crafts with damien and run playdates and I can't. I can play with him and make him smile...I clean during his meals and I do everything in my power to be a great mommy but I still have to rest a lot and he still sees me with tubes hanging out of me and visits me in the hospital...I just want to keep him the amazingly happy baby he is. I'm so scared I will die before he will remember me, to be honest I'm terrified to die. I have started writing a book just for him with our stories, our memories and my advice just incase I'm not around as long as I pray to be. Like I've said I will fight and fight until there is no fight left because I'm not leaving my family.
   Back to my biggest frustration...how to make my family understand how sick I am. I always get the anorexia brought up and I keep explaining I'm in recovery this is totally different.  I don't like to be told to "try harder" either because I'm trying the absolute best I can...I push through a lot of pain to be a good mom to my boy and I smile and try to hide it for my family because I don't want them to be scared. I know they will understand eventually but I don't want to feel like crap all the time. Sometimes they unintentionally make me feel like I'm nothing and no one has the right to do that. Like I said this was just an Andrea post nothing too important or overly interesting.