paying taxes

bubs birthday went relatively well had several cancellations and it almost broke my emotional control I bawled and freaked a Little then carried on. I think it went really well considering no one could bring him gifts because I cannot take them back on the train. bubbles and things like that and it made his day. I now have two four year old. Katie my daughter seems sometimes happy sometimes almost like she is mad about it because she wants to be older.

Yesterday I worked out in the yard took my pain pills and pushed myself HARD, and then took the kiddies to the little street fair and they had a total blast it was so fun watching them it was so fun to be a part of it. The only down side is that I took about two days worth of pain pills just to get through it. funny thing is that it didn't take it away it only reduced the burning to tolerable and the ribs . . .god whats going on in there? I'm worried that by the time I get back to the Doctor some kind of fusion has happened. It hurts, those words don't come close . . . .every day is the same thing if I'm doing something and concentrating elsewhere on the outside I look normal, I look like I can do the things I want to do. to see me working yesterday you would never know ne thing was wrong. . . . .just tolerable that's all the pills did. I woke up this morning in AGONY! it's almost like a vice tightened on my entire body, ribs, back, neck, shoulders , and the burning oh goodness it's enough to make me insane, I made coffee had breakfast and went back to bed. my Nana and my pap have taken care of my children all day.

I didn't get back up until two, wallowing around trying to escape this horrid feeling is one of the worst feeling in the world, if you set something on your toe and it hurts real bad all you gotta do is move your toe and the pain will stop. . . . . .NOTHING makes it stop, I have to do other things and find some other focus because siting still makes me almost crazy. I have to do other things because siting still brings all the pain into focus makes me very aware I cant breathe in and the burn in the middle of my back is so bad i swear there is a invisible demon sitting there with torch and a vice, fire first followed by crunching my bones together. maniacally laughing when I try to shift to get away.

I couldn't hide it today and my grandma tells me she is sorry, I don't want her to feel sorry for me. She thinks because i worked yesterday in the yard for her somehow this is her fault, In my explanation I have bad days all the time, most of the time I don't do a thing, I would much rather have this bad day because I worked for it than to just wake up to it. I have come to call it paying taxes, if I want to do something one day I gotta pay the taxes the next two or three. I wish I could say taking a vicodin would relieve it. I wish there was some stock in all the hubbub about pain pills I wish they worked for me like all these people the doctors are afraid of, but to be honest, my doctor could take them and I wouldn't really care they don't touch any thing, they don't make it stop. nothing does, this is the hell I am now faced with every day. The really awesome thing though is that I no longer care really, it isn't who I am. Some days I can pull my weight with the rest of them and some days I can't but I'm still awesome. I still fight through it, I still smile and try every day I try, I'm still worth it. This disease is the most painful thing i have ever felt, and its been a long journey for me to realize it doesn't have to define everything about me, even if my spine fuses totally I will not allow it to take the joy out of my days. watching my children smile and shriek with the band last night alone was worth every ounce of pain I feel today. SO FUCK YOU A.S. I'm still here and I'm still fighting and I'm still burning.