Raising awareness in Australia

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Hello everyone I have been on this site for a few months now I suffer from spondyloarthritis mainly alkolysing spondylitis and psoriatic arthritis.

I’m speaking to mainly people in Australia but everyone is welcome to join in on this conversation.

I am serverly disabled from my condition and I have currently started to raise funds for myself and I was lucky enough to be donated an electric wheelchair today I am so excited to just be able to go outside.

In doing this fundraising I started thinking about how isolated and depressed I have been and how in Australia awareness of this illness is next to none and the support for it is to be honest is a joke. 

I want to start something a new foundation to not just raise funds and support for people like me but to mainly bring people together Because all of us have to turn to an on line support forum because to meet someone else with the same disease near you is so rare and when you just wish you had someone to talk to that understands your pain in can be frustrating. 

So my goal is to put a face to all our stories and to make people understand that as my doctor put it

“ it would honestly be easier to treat you if you had cancer” 

We have to fight everyday to stay positive to stay independent and to most importantly stay sane!!!

This is my goal this is now what I have chosen to do with my life this disease takes everything from us so now I want to take something from it it’s anonymity!

To all my fellow aussies please feel free to private msg me I would love to hear your stories and any ideas you have on how we can make this possible.

To everyone else I would love to hear your stories to and if we can figure out a way to take this global I’m down for the fight I literally have nothing else to do but work on this and I think it’s time no one ever feels isolated from this disease ever again.

Much love stay fabulous everyone I hope to hear from you soon xx

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7 Replies

  • Posted

    Hi kristy

    I was diagnosed only yesterday after 15 years of health professionals ,X-rays, MRIs being told I had pulled muscles. Many times I thought that I was going mad.  I knew there was something really wrong with but couldn’t seem to convince my doctors. After several bouts of uveitis I finally heard about AS I would love to hear other people’s experience 

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    • Posted

      Thanks for the reply I was starting to think I was alone in this.

      I’m sorry to hear that I know the feeling to want a diagnosis so bad and then to find out you have this horrible disease. Have they said anything about starting treatment for you? 

      I’m not quite sure how I’m going to go about getting people’s stories out there I was hopeing I would get more of a response on this page but unfortunately not but I guess it all starts with one person. My goal is to connect people in the real world or at least make it easier for people to contact help.

      My story is all my life I have had back pain and I remember getting servere head aches as a child but being told I was just attention seeking which I can’t help be angry about because if someone had just listened to me my spine wouldn’t be as bad as it is and I might not have any pain at all but I can’t go back in time.

      I was diagnosed this year I had been suffering severely for about 3 yrs and nothing helped I have been on enbrel for 3 months but it’s not working so I’m about to try humeria.

      I recently got donated a electric chair to use till I can raise funds to buy my own I found out yesterday I need $40 000 and so far I have $300 in my go fund me page lol 

      I hope you are feeling ok and aren’t suffering to much mentally ok getting your diagnosis I know I didn’t take it so well. X

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    • Posted

      Hi Kristy

      It is lonely I know what you mean. I am a bit terrified. My flares have been awful the last three months and worse at night in bed. Totally fatigued all the time. My rheumatologist looked at my X-rays and basically your Sij are fused. Very raw squared and and spots of calcium. He is putting me on a TNF medication immediately. I have lived with this pain for so long now but the diagnosis is such a relief. Do you live in Australia ?

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    • Posted

      Hi 

      I’m so sorry I could only imagine the pain your in my si joints are grade 3 so I’m one step away from having full joint fusion my self it is a scary concept for me. 

      I know it’s terrifying I honestly thought I had it all figured out till I went to the mobility place and saw a occupational therapist and they put me in this chair and I didn’t realise just how much pain I was in till I Got some proper support.

      If you can find a hydrotherapy pool near you I suggest going it honestly changed my life even just floating helps and there is this stuff at chemist warehouse called ZEN it’s near the denco rub it’s all natural and is my secret weapon it’s an odd sensation but I can’t live without It. 

      I was very stubborn and felt quitting my job and using a wheelchair was giving up but the OT said to me “we give a little in one area to gain more” from my experience physios don’t know about our illness and push us to hard so if your getting the same result don’t be to hard on yourself.

      I’m sorry if I don’t make sense some times I’m on a lot of pain medication. 

      I live in Newcastle nsw where are you from? 

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    • Posted

      Hi Kristy thank god I am still very mobile. Walking is only an issue when I have a flare. I get really painful back spasms and at times I am terrified to move. My pain moves constantly up and down my spine into my hips and up to my neck. I have been self managing and self medicating for years. I am now searching for a Physio who knows how to treat AS. I went to a few practioners before I was diagnosed and ended up in worst pain so stopped going.  I have been doing pilates and that has helped but when you are in a flAre nothing helps!  It would be great to talk to others with this @@it disease. I live in Melbourne in Victoria x
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    • Posted

      That’s great!! I get so happy for people who can still walk while having this.

      I know what you mean about the back spasms That’s why I’m awake now it feels like someone is grabbing your spine and shaking it for fun.

      I know what you mean about the flare up pain it’s so intense that’s why I like the zen it sort of burns and tingles so it distracts you from the other pain.

      I hope you find someone who can help it’s just a disease  not spoken about enough that’s why I want to do this awareness thing so physios do know what they are doing. 

      My sisters personal trainer knows a fair bit I can ask her if she knows of anyone in Melbourne if you like? 

      I looooovvvee Melbourne it’s such a crazy yet relaxing place it is like Sydney but prettier and I don’t get the stressed out Sydney vibe. 

      Well if you would like to throw out any ideas you may have on what my next step should be to connect people please feel free to give me any ideas.

      I was thinking a website so when people type AS Or spondyloarthritis they fight help straight away and not a Wikipedia definition.

      X

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    • Posted

      Hi Kristy I am sorry to hear you had a bad night. I have  started dreading going to bed.  You sound  young. I am 56. Ji don’t think I realised that this disease could progress to your level of Disability.  Is there any chance of you ever being able to do without a wheelchair.

      I am sorry to hear that as I said you sound young and should be living a wonderful life. AS is a b***h of a disease. 

      In relation to promotion - have you seen this site? It is in USA and dedicated to AS sufferers. I have googled so many sites that my head is fried. I have to get up, get moving to shake my stiffness nd go to work. Talking you to has helped as it has made me realise I am so lucky to be mobile. Stay great. Patricia x

      Moderator comment: I have removed the link(s) directing to site(s) unsuitable for inclusion in the forums. If users want this information please use the Private Message service to request the details.

      http://patient.uservoice.com/knowledgebase/articles/398316-adding-links-to-posts

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