Tuesday, May 25, 2010

why do people assume....

that just because im only 18 means that i can't deal with sickness/death? Don't they get that i have been around/though this more then they have in their life? Do they not get that them trying to "protect" me is only making it worse. I'm not bugging the patient because i just sit quietly with my mom in the corner, but the husband sure as hell wants to make me feel like im 2. Im beyond sick and tired of it. Do they not get that i can handle this, and ive been though it before.. the same exact thing before..

Friday, May 14, 2010

how?

People keep telling me that i can't let the disease control me, and i have to just try and "ignore" it and go do stuff anyways. I know i need to, but i don't know how. Every time i try and push my body to just enjoy a few hours out, i end up getting sicker the next day or that evening. I guess after awhile I stop trying to do things because i am expecting the same out come every time. How do i know when my body is going to put up with me doing more without finding out it wont the hard way?


I keep reading/being told that the disease works by going into "flares" and into "remission", but to be honest i don't feel like i have gone into remission at all since being diagnosed. Its been months since i started getting really sick, and i just seem to get sicker and sicker. Obviously my body was in remission for years at some point because i went without knowing i was sick for 4ish years, but then out of nowhere it just started kicking my ass. What changed? and Why? Its so confusing knowing what to come, when no one can tell me anything for sure. Doctors have told me that the disease can just "burn out", but i don't get that. How can it "burn out" when it is so "on fire" right now? Does it just get worse, and worse, and worse and then disappear out of nowhere? We think we know what caused it, getting hit by a pickup truck as a pedestrian, but what is going to cause it to "burn out". And no don't say "get hit by the car again".

They are changing me from Cimzia to Enbrel starting tomorrow, and then when i get back from France (early July) they want to start me on some new infusion once a month. I don't understand how one medicine is different from the other, but im willing to give it a shot.

No matter what questions i ask, it seems like each answer just gives me more questions. Do i just stop asking questions, or what? Im so beyond confused about what is going on in/with my body, i don't even know where to start trying to figure it out.. hmm

Some days i sit around and try and figure it out, but usually i just wind up in tears because i get so overwhelmed/confused about it all. I don't even know where to start anymore, or where to turn. I want to be able to kick this disease in the ass, but how?

Monday, May 10, 2010

sick and tired...

i'm sick and tired of everything! why is it that i wake up and can barely get up yet a fucking again? I just wanted to go to the barn for a little bit and hang out with friends. i wasn't even asking to do anything, now it looks like im going to have to be drugged off my ass so that im comfortable (well kinda) for the day. I get the cortisone injections tomorrow, and the thought scares the crap out of me. I don't want them, but at the same time i really do. I just want this all gone!! and never to come back!! how hard is that to ask? obviously its way to hard to ask. I don't want to have to worry about walking around the house alone, for fear that i might fall and be unable to get up. I really don't want to take these damn pain meds, but i would go crazy without them.

I guess i just have to suck it up till tomorrow and hope for the best

Saturday, May 8, 2010

so i think i get it now...

i think i get why this hip pain freaks me out so much.... I just imagine how much joint damage is being done when my hips are this bad... im scared to death to get cortisone injections in my hips (they hurt like bloody hell in my shoulders, i can't imagine how bad its going to hurt in my hips), and im even more scared of hip replacement surgery. People/doctors tell me that JRA isn't as aggressive as RA, but then why is this disease seem to be progressing so fast? Im 18 and wound up in the ER yesterday getting a shot of morphine and toradol. They didn't run x-rays or anything while i was there, just gave me drugs and let me go. i was surprised they gave me pain meds so strong, but my mom was there and explained that my percocet wasn't working and gave them the "i'm a mom who hates seeming my daughter like this.. give her something strong or else" Plus i was laying there half asleep, unable to stay awake, barely remember what anyone was saying at the time, and shaking out of control.
I was pretty much unable to stay awake all day yesterday! Hell, i fell asleep in a booth at a restaurant while my mom and i were trying to figure out which ER to take me to, in order to have better luck of getting actual care from a doctor who gave a shit. I haven't done that since i was super super little.

Why do i even think about these things? Im now practically crying because im scared out of my mind. I hate this disease. I spent a lot of yesterday crying to my mom that i wanted this disease gone, and that i never wanted to deal with this anymore. i hate being 18 and unable to get out of bed by myself. I woke up in tears from the pain and needed my moms help to get me out of bed.

I hate being unable to drive myself anywhere thanks to me taking pain meds and not feeling good and feeling like i would be unable to react if anything were happen. I hate the damn pain meds in general, yet i can't not take them. I hate having to take so many pills everyday, and i hate having to give myself a shot every 2 weeks. I hate having to worry about going out with friends for fear that im going to run out of energy and ruin it for everyone. I hate having to worry about driving somewhere and not being able to get home on my own.. I hate actually going somewhere and being unable to drive home on my own. I just hate everything about this disease. It has ruined my life. I know people say to just learn from it, and grow, but thats not helping me right now.. right now i don't make any promises to do anything because i always have to cancel them, and i feel bad after canceling with one person a million times. I hate the idiot that hit me with his pick up truck and caused this disease to start. I hate the damn depression that comes with this.. I hate having to take prednisone all the time. I hate the side effects from all the meds. I hate being terrified to go on what should/will be the most incredible vacation of my life.

Wednesday, May 5, 2010

why?

Why is it that some days i can totally forget that i have JRA, and some days its all i can think about? Why is it that some days i can get up without any problems and go out with friends and go to the barn, but other days I can't manage to get out of bed? Why is it that some days i am excited about life, and some days i am so depressed? Why does one think start hurting as soon as something else is feeling better? Why do i feel like i can't ever catch a break? Why do i feel like some days the world is against me? Why do some days/nights i just feel like crying? Why do some days/nights i start crying and i don't even know why? Why do some days/nights things that are supposed to cheer me up make me even more depressed? Why is it some days that im terrified to drive? Why is it some days that driving over an hour doesn't both me one bit? Why am i so scared to go to Europe... this is supposed to be the vacation of a lifetime.

I just don't get this.

Why is everything in my life so complicated?