family pictures

im glad we were able to take family pictures this year. i feel like such a slaker.

Trip to Utah

so, we went out to Utah for a week. it was nice, it felt like we were going home after a long and terrible vacation to california. i dont think i was prepared to see my home housing another family. it was hard. i remembered all my family pictures and decorations hanging on the wall. the memories that came with every room. i began to cry. i know its a stupid thing to cry over. its just a house, but still. heres what i am going through since joshs birthday. i started my clinical trial in october. i take a pill once a day, and get an infusion of another drug once a week.
fun side effects include:
-not being able to taste salt
-not being able to taste sugar
-nausea (sometimes the fun that comes with nausea too)
-low energy
- and my hair is growing in white. :(

things were going well for a while, untill my state insurance decided to change me to another small insurance company. (im on disability so im suppose to stay on medi-Cal.) now my doctors office isnt able to accept that plan so hey, that means no more treatment. i called medi_cal and complained, but apparently its a lot easier to change me off of their plan than to go back. so im in limbo for now.

we went to the Prelitigation hearing against the hospital tuesday. They made me look like a liar. the doctors pretended to have empathy for me and then said i never told them any of my concerns. this makes me sad because now we might not get anything. which means i might never move out of my moms.

it seems like all we have is bad luck. we are broke, living with my mom, and now i cant afford my treatment. i wish my luck would change. i really want to just get a place of our own, but i dont think thats going to happen...

today is my baby boys 1st birthday party!

for those of you who follow this blog you get a sneak peek at the cake. :p i had to post it its so awesome!

For those of you who follow this i want to warn you. the words i write here are what i feel inside. some things are in the moment. some things more personal. this is my journal. it is the only thing i have that i can express every fear and joy without feeling judged and i dont have to sugar coat anything. im not looking for attention or trying to make people feel sad or sorry. this is my life. and so...

im scared. things keep happening to me and i feel i am slipping. why is my body breaking down? i had a dream i was in a field and there were flowers all around me. there were trees and creeks and it was beautiful. i even had long hair again. lol. i saw josh playing in the water, only he was about 4 or 5 years old. he was talking to me saying, "mommy, come play with me before you have to go again." i was having a dream in a dream. i was in joshs dream. he could only see me when he was sleeping. and i was so sad that i didnt have enough time with him. why do i keep hurting myself like this? why cant i escape reality into a dream where nothing hurts me. where im not sick.

i dont remember if i mentioned this, i was rejected for the clinical trial because my insurance company denied coverage for it. i have been trying for the past few weeks to apply for state and federal assistance. i guess my situation is pretty bad if i was approved for federal disability in about 11 days and state assistance and mediCAL in about 2 weeks. that means i can get my spot back in the clinical trial. hopefully this is the road to my future. i hope this treatment works...

more fun

I recently came home from the hospital and thought i should update this. oh yeah, and put up another picture of josh. hes so stinkin cute! anyways, this week I have a rare blood infection that people who dont have a spleen get. So i guess this is my first taste of what the rest of my life without a spleen will be like. I dont know why i am so lucky to keep getting all these rare things. i cant carry my son right now because i have a PIC line. that is a nasty little tube (about the size of a coffee straw) that was inserted into my right arm and travels through a vein all the way to somewhere right before my heart. yea... i hate it. it is sore and did i mention i cant carry my son? :( im so ready to just move on with life. i want to leave all this sickness behind me and just be a mom. i wish i could be back home in utah, where josh is learning to walk in our home. Having play dates with kids from church. walks to go see "albert", the horse around the corner. i miss sitting on my couch watching the rain fall through my big front window. the solitude and the privacy. Its not that im not grateful that my mom is letting us stay here, its that i dont feel like me anymore. This isnt how growing up is suppose to be...

A plan

I finally have a plan. I am going to be starting a clinical trial soon. finally, something i can afford. (clinical trials are free...) Truth is im scared. i dont want to me the mom who is sick and weak. frail. i want to run with my son. teach him how to play crab soccer. build a fort. enjoy a walk by the river. but maybe a frail mom is better than one who isnt there at all. my leg always hurts now. pain killers dont work. and now my doctor says he found i have a blood infection. I had testing done today to check again. i should know in a few days. i had a nightmare the other night that i was in a coma for 6 years. i woke up and josh was a 7 year old boy. he didnt know me and i missed everything. thats what i am afraid of most. i dont want to miss his life. if i am dreaming, when do i get to wake up?

i really wish that giving up was an option... im so sick of being in pain... if i didnt have my son, i probably would... im tired of doctors, pills, tests. tired of pitty and sadness. tired of all the crappy visits and doctors telling me my odds. tired of keeping a straight face in public. im not afraid to die... but im not ready. how is this fair? everyone says how im "so happy and uplifted all the time..." well, this is who i really am. im sad, depressed, and i dont feel like anyone else understands...how could they? i have so much im not willing to leave here on Earth. Everyday reminds me that im one day closer to death. and why havent i started the treatment that can save my life? because i cant afford it. i dont want to leave my husband in debt when it cant save me.