27 with AS looking for people to chat to

Posted , 6 users are following.

Hey im 27 i have AS with grade 4 si joint disfuntion. The bottom of my lumber spine from s1 to l5 is completely calcified. I have 3 buldging discs a herniated disc and degenerative disc disease. I also cant feel the left side of my body and sometimes the inflammation in my eyes makes me go blind. I have been in hospital 6 times this year for extreme pain .

Its sad when your writing a list of your problems when you have to stop and think did i forget anything?

With all this i am normally a very happy outgoing person bursting with posotive vibes even when the pain is unbearable but the last month as i have been weaning off the steroids i have become a vegtable and no amount of stretching or posotive vibes gives me any releif. I dont want to up the steroids as i put on 20kg in a few months mainly fluid but im only 5'2 it destroyed me.

Im writing this because i feel like when i go to the doctors they are not realistic in their expectations of me.

No one is a harder critic then i am i dont beleive in quiting but thats just it when i write out everything thats wrong with me and i see some people cant even move from.one slip discs i think well s**t like maybe im not a failure maybe this is just what it is.

I dont know what my point is im kind of high on painkillers but im just sick of feeling isolated and having no one to talk to that understands.

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  • Posted

    Hey Kristy, :-) 

    I hope your having a good day today. Im 29 and im 3 weeks post total hip replacement on the right side with the prospect of the other one being done.  Ive only just discovered this site and if truth be told i can completely understand the isolated feeling. Socially and having a life are so hard, friends come and go because they cannot deal with  the condition or dont take the time to understand it.  I remember cancelling a big night out and going to a local pub for a quiet drink still in heaps of pain resulting in loosing one of my "best" friends. 

    The day to day joys of living with what at times can be an invisible condition can be so frustrating,  it looks like we have a good group of people replying to keep you social :-) im here if you ever need me xxx

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