Face 1117

Hi there, my name is Dan, I live in Perth Australia. I am 27 years old and I was diagnosed with AS approximately 6 years ago although I have suffered since childhood. Similar to face 1112, I was back and forth to the doctors in my youth only to my told I had growing pains or I was a hypochondriac. At the age of 14, I had to quit my favourite sport, AFL, as I was unable to take the bumps. By the age of 15 my knees would swell up to about twice their size if I simply stood up for five minutes, by this point I had pain in my spine etc. too. At 17, I was no longer able to play any form of competitive sport, this was a big deal for me as sport was what I had grown up on and was my life. Around the age of 20 I had a M.A.C.I operation on my left knee, believing this would be the road to recovery I was very excited, following surgery, my knee pain persisted. Shortly after, I was seeing a different doctor about the wrist pain I had, along with the same surgeon about my knees, hips & shoulders. After a few injections of cortisone and no real improvements I was referred on to a rheumatologist in the same building who diagnosed me with AS. I was put onto Humira which is probably the hardest thing in my life. I’m not truly afraid of many things but I’m close to tears every time I have my fortnightly injection.

Following diagnosis, I was “okay” for a couple of years. I managed to backpack around Europe without any real concerns. Over the last year or two, things have been going steadily down hill. I have recently had double hip replacements, I’m staring down a shoulder replacement early next year, a few knee surgeries and my level of pain and tiredness has sky rocketed. I frequently get ulcers in my throat/mouth which makes it uncomfortable to talk. Pain often interrupts my sleep, it’s 2am as I write this email, and has resulted in me being a very grumpy person at times. My days at the moment are pretty much wake up, go to work, come home sit on the couch and recover. I feel as if I’m wasting away. I work full-time in a fairly full on position and I’m studying a double degree on the side, I’m genuinely concerned there will come a time where I’ll have to give one of them up. The past 6 months I have really be on the decline and that concerns me greatly. Simply sitting in a university lecture theatre, my spine seizes up greatly, my ribs hurt, i get pain in my chest (almost like an arrow has gone through my back and is coming out of my chest, amongst other things. It’s tiring just having to continuously deal with severe pain. I am worried about the future for myself, I worry about my fiance and what she has to put up with currently and will have to put up with in the future. I currently struggle to complete even the most mundane house chores and I can only see it getting worse in the future.

Over the years I probably haven’t truly accepted what is happening with my body and I tend to push through the pain and just set everything to the side. With my recent health declines I am realising that I need to start listening to my body more. It feels good to get some of this off my chest and I look forward to (hopefully) meeting some people through this experience that live in Perth or Australia that I can share experiences with and who understand what I’m going through.

Western Australia, Australia

2 Responses to “Dan”

  1. Dear Dan,
    Thank you so much for sharing your story with us.
    Sincerely Cookie

  2. Hi Dan how exactly did you manage to backpack Europe while taking humira?

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