Kayla Rose Smedley
Hi all out there living or dealing with AS or other auto-immune diseases, my name is Kayla and I’m a born and breed South Australian, living in Adelaide. I was diagnosed with AS in 2012, one week after my 18th birthday. This is my story of how I got my diagnosis and how I am doing currently.
It all started back when I was merely a 12 year old girl. I would get some back aches in my lumbar region.I didn’t really think much of it at first, but then I started to really notice it when I did just simple tasks such as making my bed. I didn’t say anything to my parents right away as I thought it was just my back playing up after I quit being a gymnast the year before, due to having a bad knee, but I finally caved and told them about my back pain. They didn’t believe me and just thought I was saying so to get out of school and such. So I just put up with it for a bit longer until I kept telling my mum something was wrong, “its not normal for someone my age to be getting pain like this” is what I would always say. My mum finally got on board thinking it could be residual pain flaring up now from a car accident we had 2 years prior.
We waited until 2008 when I was 14, before we really did anything as the pain was only every now and again. We dismissed the theory of the accident causing the pain and moved to the possibility of me having scoliosis as mum seemed to think my spine was slightly out of line. So we went to the first of 3 Dr’s. She ordered me to have my whole spine x-rayed. The results where normal and the doctor said that is was just adolescence aka growing pains. I was in a word shattered as now I had no idea why I was in pain.
So I continued on with life, then in 2010 I went to another Dr as my mum had the sudden realisation that I could have AS she her sister (my auntie) has it, I did some research and looked at my symptoms and I was convinced it’s what I had. The Dr I saw this time was skepticalas I was only 15 turning 16 and my pain was in the ‘wrong spot’. My pain started in my lumbar region and has continued up till now, he said AS starts in the pelvic area and I should be 21 or older. Mum and I insisted he run an x-ray and a blood-test to see if I was positive for the HLA-B27 gene. The Dr only ordered shots of my SI joints, that showed nothing and I was annoyed as I said that’s not where the pain is. His response was if you have AS this is where it would show. But I did however test positive for the gene. Alas I got sent off again with no diagnosis and no steps closer to figuring out my pain. After that my back got put on the back burner for a bit as I started to see surgeons to try and sort out my knee problems. I got the ball rolling with that and was put on the waiting list to have surgery. I got the call for my surgery in September 2011, after my surgery when I was more mobile I went to yet another GP being a year older and still in pain I had had enough. This Dr was more understanding. I had been through the ringer and just had surgery to top it off. We again asked about me having AS. He also didn’t think I did as I was too young but he ran another blood test to make sure I didn’t test false positive to the HLA-B27 gene before. So with the results being positive again and mum and I insisting something more needs to be done the Dr put me on the waiting list to see my now Rheumatologist that specializes in AS.
I ended up finally seeing the rheumatologistin early August 2012 while I was still 17. She ran me through a few physicals before she did anything, checking my knees and ankles, my chest expansion which wasn’t goodand is now only at 3cm, my degree of bend I had in my back which also wasn’t good, nowalso 3cm. After she questioned me and what not she explained to me that I have the characteristics that of AS. Before she could tell me if I did in fact have AS she ran some more tests. So off I went to have another x-ray andnowCT and MRI. I went back to get my results and itwas September and 1 week after my 18th birthday. Her news was good and bad. She was finally able to give me a diagnosis for my pain, the bad news was that it was AS. I was mostly relieved as now I finally knew what my pain was and I could now get some help. MyAS only showedupon both the CTand MRI. If only I had of gotten an MRI or CT sooner I could have avoided a lot of much about. My rheumy put me on Mobic (Meloxicam) and sent me on my way. In early December 2012 I went in for more and extensive knee surgery. During my recovery I didn’t have much back pain due to the heavy pain killers I was on for about 6 weeks, once I was getting better and finally walking without an aid or limp, my pain skyrocketed, due to not walking right I messed up my posture and put unnecessary strain on my spine. Once righted I continued on with getting my knee right and keeping my meds up for my back. In 2013 on one of my visits to my rheumy I expressed how my pain was increasing as well as my stiffness, so Dr. Walker changed me to Naproxen and so far it’sstill working. Sure I still gets days where it’s a struggle to get out of bed and allI wanna do is curl up in a ball and cry. But I try to keep active and just push through the pain.
Now in 2014 I am proud and thankful to have found this wonderful network of people all dealing with AS or something similar. The faces of Ankylosing Spondylitis is such a wonderful thing and I am proud to be a part of it to help others and to have thesupport of people that know exactly what I am going through. I am also happy to be a part of the 2014 awareness campaign – Walk Off Your AS. It’s amazing how when I was first diagnosed I felt so alone and now 2years later I have myself a whole networkofpeopletotalkto.
I hope my story can help others out in anyway. My advice it to never settle and make the doctors listen to you! You are the one in pain, not them. Good luck to all you fellow ASer’s out there. Enjoy life and live it to the fullest.
From your fellow South Aussie xx
South Austraia, Australia