never known anything different

My life has always been based around my RA I have never really known what it was like to not go a day without the pain. I was about 15 months old when I was diagnosed with JRA and I have lived with it for 16 years now. When I was younger I always new I was different from my friends as I couldn’t do everything they could. I never understood why I was different and why I was the only one who had these pains. I spent all of my primary school life figuring out how do balance my RA with schooling. In school I always felt like I knew nothing because I had so many days off due to my RA and I never enjoyed school because I could never do all the work as I either didn’t know or I was in so much pain that I couldn’t stay at school for whole days so I was only at school for half days. When I was 8 I got glandular fever so that caused me to have 5 months totally off school as I could barely get out of bed but I managed to get through the year with my mum home schooling me, once I was better it started to look up for me as my anti-body levels were down to normal and all the inflammation had gone and it was finally looking like I was going into remission but 3 months later I was in excruciating pain so when i went for tests it showed that it had actually spread to my upper body now. So my rheumatologist thought it would be a good idea to start methotrexate to see if that would calm it down to a much more manageable condition again. I was on it for about 4 months before I got taken off it. I was so young that i didn’t understand what this was for and why it made me feel so sick and the fact I couldn’t see any off its benefits straight away so my doctor took me off it and just let me go on with naproxen taking that everyday and it did help to make going to school part time manageable. Once I got to high school I had to start the managing process all over again it took a while for me to adjust to the difference but in the end I started to enjoy school again as I felt like I finally had control over my condition. While I was in year 7 my doctor asked if i was willing to try methotrexate again as now i was older and understood why i was on this medication and it helped me a lot but it wasn’t giving me the results the we all hoped for so I was taken off it again and put on avara to see if that would help manage it without the harsh side effects. And I have now been on that for 4 years and it has helped me stay at a much more manageable level. I’m now back on methotrexate again as I had a major flare and it seems to be the only medication that can keep it under control even though it is only for a temporary amount of time. I will always want a cure but in some ways this condition has made me the person I am today strong and happy because i know that someone out there has it worst then me and that makes me sad as I wish that no one would ever have to deal with this condition.

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