bad day

   I try my best to face everyday no matter how much pain it brings or stress with a smile and a determination to fight through it, but somedays its easier than others. I spent the morning organizing our new place some more and chasing my beautiful little boy around while he tried to "help" mommy and daddy get things done adn then layed down for a nap while lil man did and woke up crying in pain. Josh was there the whole time holding me and making sure I got more pain meds down my tube and helped me through the roughest part of it. Then, I get one of those e mails letting me know that I need to go see my doctor soon for more blood work and to discuss more medical crap as usual. I got my appointment set up and then went to go schedule my transportation where they told me they wouldn't do it without an exception letter from the doc because she was something like five miles out of their coverage range. I try to keep my cool usually but today I straight up lost it...the reason we moved close to my family is for help given how sick I am and the reason I still see the doctor in Columbia is because she has been taking care of me for years and frankly all the other docs have told us they didn't feel qualified to handle someone dealing with failing intestines and averaging a hundred mls of pain meds a day to keep functioning and constantly battling with insurance to get new tube feeds and medications approved. Needless to say we got it figured out this trip and by the next visit we will have the letter on file but it was just all too much for me today.
   I fight so hard to stay strong, I want to look like I'm handling everything in stride, I don't want to scare josh or the rest of my family so I try to keep in good spirits and keep fighting. I figure I fought my way out of my anorexia I can fight through this. I want so badly to be a good mommy to my son, a good partner to Josh, a good daughter to my parents, and a good friend and sister to others. I want to be able to chase Damien around the park for hours at a time without needing a rest, I want to be able to keep a spotless house, and it bothers me and humbles me that I can't and often need to ask for help. I get discouraged when days like these happen, I get embarrassed when I  breakdown and cry in the middle of my parent's living room. I want so badly for everything to be okay not for me, but for them. I don't feel sorry for myself because there are plenty of people that face the same things I do everyday and I'd rather me be sick than someone else. I have a lot of fight in me and I will fight and keep fighting.
   I feel guilty, almost like this is another blow to my friends and family, I put them through years of pain and fear during my anorexia. They wondered all the time if I would die or kill myself and when I would talk to them I was so dead inside that it hurts me to think about the things I would say to them. I've apologized to them for that, I think it was a special part of my recovery to address everything with them and explain to them the answers to the questions that they asked themselves and me. We became closer in some ways, and I think they were actually proud of me for beating that monsterous disease. And now here I am with a failing body and there is nothing they can do and I can't really answer their questions anymore. I've accepted this and I will fight it, but I leave a lot of the  tough stuff out when I talk to them because its not fair to put them through more hell. With Josh its different, he is the one that picks me back up on days like today when I fall apart in tears and talk about giving up and he reminds me why we keep fighting.
   Do I think its fair that I was given this disease, no, but I don't think its fair that anyone is given any disease. The way I see it we all get handed some crappy hands in life sometimes but its how we play them that matters and I plan on playing this hand out and living everyday and laughing as much as I can. I have friends who do the same thing and I admire them for the fight they put up everyday. I spent way too many years wasting the life that was given to me and now I'm going to fight to enjoy however much time I have left...no matter the pain, surgeries, medicines, doc appointments I still have my beautiful son, amazing partner and family and friends who make me smile everyday. I'm sick but my life doesn't need to revolve around it, so today I fell down but tomorrow is a new day and I will get right back up.