A.S. Face 0097: 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

15 Responses to “A.S. Face 0097: 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

    • Cookie, you are inspirational…..you are doing a wonderful thing with this site. I am sending the link to everyone I know, so they can educate themselves on AS. So many people just don’t get that we look fine but our bodies and minds are hurting. Keep up the fabulous work xx

      • Dear Nikki,
        Thank you today was a remicade treatment day so I am not feeling so good. What a wonderful gift to receive. This evening will be the first month anniversary of this site. I have 100 Faces so far, or will as soon as I add them today and over 30,000 view. It is so humbling and wonderful at the same time. I hope this site can be the words for those who are unable to tell their friends and family what they want too. Thank you for being a part of my vision.
        Sincerely Cookie

  2. I love Remicade, too! It has changed my life. However, I have been sick more frequently and for longer periods of time ( currently I have Pneumonia again). I, like you, no longer work full-time. Yet, I am now able to teach martial arts part-time. I am also, like you, to be blessed to have 2 healthy little boys (ages 3 and 18 months).

    Keep up the fight for your wonderful son; AS’s are with you in spirit “Standing Tall all over the world”.

    God Bless!

  3. So glad to find another mom with this. Finally had to quit working myself about 4 months ago. My hubby and three kids need me to function!

    • Shelly, it is amazing how kids keep us going. I look at not being able to work now as time I get to spend with my son and it is so nice to be able to pick him up from school everyday and go to all his sporting events. I treasure all those moments, because they grow up too quickly!!

  4. Jonathan, luckily I have not got sick often while on remicade. Had a very nasty infection a while ago that took 2 months to get rid of, but so far that is it. I had my son tested a few weeks ago for HLA B27 gene and he was negative….it was such a happy day!!! It is wonderful you teach martial arts part time…..it is amazing what us AS’ers can do!!!

  5. Nikki has been my best friend for around 17 years..I have never quite understood what she goes through with AS, as she only started suffering really badly after I left Tassie with my family to move to Western Australia. Through phone conversations, I have heard Nikkis pain and listened to her tell stories about going into spasms in her busy work place and getting carted out by ambulance which she always tell with such humour that if you didn’t know her, would mask the pain in which she actually goes through and lives with on a daily basis. I love you Nuteyes and you know that I am and will always be here for you even when your doped up on pain meds lol. Your humour and courage inspire me xxxx

  6. Nikki, you do have wonderful son and it brings tears to my eyes how he he helps you so much. Hope all is going well with the Remicade still. Keep us posted. You are precious to….. I can hear it in your heart. It is hard when only “we” know what it feels like to hurt every day. Every morning is a new experience for me.

    • Hi Stephanie, just thought I would update. My Remicade infusions are still working, not as well but doing enough to make life bearable. My son is excelling at school and in all the sports he plays which makes life so worthwhile. Having him is the best medicine I can get. Hope you are well x

  7. I enjoyed reading your story :)) I have 4 young men who have been a true blessing in my journey with AS… There’s always a reason God blesses us with sons :)) keep on fighting, we got this!! God bless you & and your Angel of a son… #770

    • Thank you for your comment Rosalie. I totally agree with you….god does bless us with sons for a reason. I have just read your story and sad that one of your boys has AS, luckily he has a wonderful Mum who can guide him with experience and most of all LOVE. My son has tested negative for the gene, thank goodness. You keep fighting, we sure do ‘GOT THIS!’

  8. Hi Nikki,
    I live in Tassie too, just south of Launceston in Perth. (I have a little cafe there called ut si, in an old church on the main road) I read your story & your experience with AS mimics mine. Last year I spent most of my time in unbearable pain with my back in spasm & in & out of hospital on morphine. This year I discovered Alan Ebringers research on low/no starch diet & AS & am now almost completely pain free! I saw Hilton Francis & Jane Zochling too in Hobart & they were impressed with my results & told me that whatever I was doing was working so to keep doing it 🙂 Jane said she wishes more ASers would consider diet as part of their treatment but acknowledged that a starch free diet is hard work…too hard for many people. For me, putting up with pain was harder.
    Good luck with your journey & if you’re ever passing through Perth, call in to the cafe & say hi.
    Colette (face 0861)

  9. Please, don’t stop the faces of ankylosing spondylitis! I need to read more and, perhaps post my own story! Margery

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