Nikki Long

Hi, my name is Nikki Long, I live in Hobart, Tasmania, Australia.  I am 39 years old and was diagnosed with AS when I was 21.  I first started having symptoms when I was 17, by 18 I could barely walk and it took 4 years for a doc to do a blood test and find I was HLA B27 positive.  I spent years changing meds to find things that worked until late last year, when everything I was prescribed did not work anymore……eventually I was having constant spasms and was carted off to hospital so much that I had to give working, which was so, so hard.  I had worked since I was 16 and all of a sudden I just couldn’t do it anymore.  I was constantly in pain and so, so tired….I used to cry just having a shower.  Then the depression really set in, I felt so useless and fed up and thought that it really was not worth fighting anymore.  By chance, however, I came across a rheumy called Dr Jane Zochling who asked if I would like to participate in a study for AS.  I agreed and she got me onto remicade, which in Australia the government subsidise in chronic cases and I fitted the requirements.  It has made a massive difference and I am not so tired anymore and the pain is still constant, but bearable. I now volunteer one day a week for 5 hours at a drug and alcohol rehabilitation centre run by the Salvation Army and this get me out of the house and makes me feel a bit normal for a while.  I still have days where I flare up or go into spasms all of a sudden, but I am so thankful for my wonderful GP, Dr Russell Gibbs, my rheumy Jane Zochling, my wonderful family and friends and most of all my gorgeous 10 year old son, who helps me every way he can.  He dresses me when I can’t do it myself, he lifts things for me when they are too heavy, he rubs my back when I am in pain……he does more than 10 year old should have to and I am truly blessed to have him.  I am also grateful to be able to communicate with other AS sufferers…..unless you live with it, you really don’t know the struggle it can be physically and mentally…it is comforting to know there are people like us all over the world that understand.

Hobart, Tasmania, Australia

One Response to “Nikki Long”

  1. Dear Nikki,
    Thank you so much for sharing your story with us. I, like you struggled until by chance finding the doctor who would change my life, Remicade has offered me a life that I can live with. You are right your son is gorgeous, but he looks JUST like you.
    Sincerely Cookie

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