Frustrated-Vent-Read at your own risk

[Guest guest]

I am feeling very frustrated about having this disease. I think a majority of

the time I don't even think about it as having a disease because I have been

living with it for so long that I don't think I even remember a time when I

didn't feel this way. But then there are days like this (sometimes weeks like

this) where I think to myself I have already been living with this for so long

and there is no end in sight and its soo annoying! I feel so lucky to so far not

need any type of replacement, but at the same time its frustrating that nothing

has really changed. I'm going through a flare right now.. my hips, knees, and

spine are killing me and like a true spondy its affecting my feet in the worst

possible way. The other morning while walking to the bathroom in the morning I

was in tears my feet and knees hurt so bad that it was excruciating to walk to

the bathroom..I'm 21 I should be past that whole crying cause it hurts thing..

I'm not a big wimp when it comes to pain either.. I had

abdominal surgery and was up walking a few hours later despite the fact most

people dont get up for at least 24 hrs.. but this pain made me cry.. The part

that is bugging me most is I take all of these meds that have these god awful

side affects if I ever want to get pregnant I have to be off Arava for 2-3

years.. granted I'm not trying to get pregnant anytime soon..but that thought is

scary..and then there is Remicade with all its scary side affects and its like I

wouldnt care if I felt like I was getting a lot out of it, but I don't feel that

way.. I still feel like crap.. so why am I risking my life and future with these

meds if they aren't doing a lot.. And like college should be the best time of my

life I'm 21.. and its like I cant even go out and do anything irresponsible

(like drink more then one drink per week cause apparently my liver will shut

down) its not like I really want to do it.. I just want the option.. Arthritis

has affected every part of my life and I'm not too

pleased about it.. even when it came to picking colleges I had to go with the

close ones so that I can come back every 8 weeks for my rheumy/remicade

appointments.. I sometimes just wish that I had like a day to be disease free..

just a small break.. I don't remember what it is like to not have pain or feel

bad.. thats all I want... just one day..

(JAS, 21) J.A.S= Juvenile Arthritis Sucks.. not what it stands for but

the way I am feeling right now.. the acronym might as well be the same!