My name is Trish, I am 34yrs old and Live in Queensland Australia.
Where to start? It is hard to work out the starting point. Just like many other stories I have read here diagnosis is not where our disease started and it is often difficult to work out exactly when our first AS symptoms developed so I will go all the way back to when I was 7 or 8yrs old. I am not quite sure what is and is not AS related but it is as good a place to start as any.
I grew up in the country and up until the age of 7 or 8 I had the usual childhood illnesses including measles but was otherwise healthy and extremely sporty. Then I was hospitalised with a severe stomach bug. I believe this may have changed things.
By the age of 10 I had developed sever Osgood schlatters disease in my right knee. The specialist said it was the worst case he had seen in Australia. My leg was promptly placed in a plaster cast from hip to ankle for from memory 3 months. This didn’t stop me though. I continued to play sports with the cast on and even competed in Horse riding competitions. I have to admit I looked pretty funny.
Later that year I was hospitalised for whopping cough and then developed Asthma. Again this did not stop me. I competed at state cross country running titles the day after being released from hospital from Whooping cough. Over the years I competed at numerous state and Australian titles for a variety of sports whilst at the same time being in and out of hospital multiple times every year with severe croup. The Doctors and specialist could never work out what was causing the extreme inflammation of my throat.
By age 13 I had had Rubella and had suffered many broken bones from sport and my right knee was no better. I was offered a knee replacement but due to the risks of not being able to continue with my competitive sporting career, I declined. I was told that if I didn’t slow down I would be in a wheelchair by the time I’m 20. Well if you haven’t worked out already I am a pretty stubborn girl. I did not slow down, if anything I pushed even harder. I went on to have 4 surgeries on a badly broken finger and spent a total of almost 6 months in and out of a cast. Again this did not stop me. With the cast on I competed in state athletics and the State titles for Vigoro ( woman’s cricket) Where I won almost ever trophy category with a bowling average of 1.68 runs per wicket. Yes I was stubborn.
I graduated High school in 1996 and went on to university until I gave birth to my daughter in July 1997. It was around this time that my back started to hurt more than usual. Growing up in the country I thought this was normal from the hard work we did on the farm. Almost all the adults, particularly males had a bad back. It was nothing new.
I went on to have my son in 1999 and then went back to study so that I could enter the Police force. I completed my studies and all of the entrance physicals, exams and interviews. I was one step away from being accepted into the academy and then came the Medical. It was there that I found out that my back pain was NOT normal and that my back problems exclude me from entering the Police. To say I was devastated would be an understatement.
Over the next 5 years my back pain got worse and worse. I had many X-rays and lots of different pain medications. I won’t go into what the x-rays showed as most of you have your own that would tell the same story. In 2005 things started to get serious as I was pregnant with my third child (another girl) I suffered horribly with symphis pubis dysfunction and was induced early due to the pain and the pelvic bone alignment getting worse. I had major problems with all of my pregnancies so again didn’t think this was anything overly unusual.
In 2006 I moved to Beautiful Bribie Island. I had been on Tramadol 200mg for the past few years and even though it didn’t seem to help much, I was scared to stop taking it. I bounced from one doctor to another so that I could continue to see them for free (bulk billing Medicare Australia pays) as one Doctor stopped bulk billing, I would move to the next. Finally I started seeing my currant Doctor who at first refused to write me a script for such strong pain killers without first doing some tests. X-rays and blood test were done and when I went back for the results, my doctor had tears in his eyes as he gave me the diagnosis. You have Ankylosing Spondylitis. I got him to write it down. Haha. As with anything I have never heard of, I raced home and began to research everything there was to know about AS and almost immediately found a support group. This is where I met many wonderful people including our own Face #1 Kevin and learnt so so much. And without the support of the many wonderful people there and now faces here, I can’t honestly say if I would still be here today.
I am sure many can relate to the whirlwind of emotions, the ups and downs of first being diagnosed with AS and then the following mirade of specialist appointments. I was given one medication after another to try. Too many to list. Oxycontin saw me be admitted to hospital once again for allergic reaction and blood clots in my bowel. After this my Rheumy was able to get me qualified for biologics. I started on Enbrel early last year but again after 7weeks I reacted to that. It caused my existing heart problems to get worse. I would have very scary bouts of heart palpitations. So from then on to now I have to be very careful with what I take and am currently not taking anything for my AS, only nexium for heart burn. Yep still stubborn. I was sent to a pain clinic but after a few visits was left wanting to blow the place up. They just don’t understand the pain of AS and think everything can be cured with meditation. I wish.
I finally had surgery on my right knee last year and have to say I am no better for it but that is a story for another time. Almost all of my joints are now affected in some way from the AS. The chest pain is often the scariest. I have endometriosis, IBS, an electrical problem with my heart and a lesion in my stomach from all the medications. Sometimes I feel like I am going crazy and all the time I am in pain and so very tired but I press on. Sadly my eldest daughter (17yrs old)has also been diagnosed with AS and RA I will encourage her to do her own story. My 15yr old son has PSA and juvenile arthritis and my youngest (9) is being investigated for Osgood schlatters, fingers crossed she doesn’t develop AS. So I have them to worry about more than myself. But that’s another long story.
It might seem funny to some reading this, that I have spent a lot of time writing about my life pre AS diagnosis. But that is because I feel no need to go into my life with AS too much because my story with AS is not all that different to all the stories that go before me. I don’t know how much of my childhood issues are related to AS but I have an inkling that the stomach bug may have been a possible trigger. Pre AS I was extremely active. I was the go to person for my whole family and community groups I was associated with. If you needed something done, I was the one to call. If you needed to know something, I was the person to call. I have a habit of thoroughly studying anything that grabs my attention.
AS changed me, I am now on disability, but it took a long time for me to realise that and even longer for others to realise. I was no longer winning trophies and medals, I could no longer jump the second I was asked to help with something. I could no longer be that person who said move aside I will help lift that heavy object. I lost my identity and I wasn’t happy about it. Like I said if not for the support from many of the faces here I don’t know where I would be. These are people I have never met, yet I class them as some of my best friends.
Have I mentioned I am stubborn?
Well with the support of all the wonderful people, I have managed to pick myself back up and get on with things. Not always good though.
I still push myself over and above what I should be doing and I often pay the price.
The reason I am finally writing this is because I am having a rare day off. I am exhausted. I have pushed too far yet again and my body has said enough. So today I will rest and tomorrow I will push on again. I have found another great passion in life. Now that I can no longer be competitive I have stepped into the role of training those that can. I have found purpose in my life as a trainer of Surf lifesavers (lifeguards) I know that when people visit our beautiful beach they will be safe and will be going home at the end of the day because they are being watched by professionals that I have trained. I feel good about that.
I still have my bad days and even the odd really bad day but I have accepted the changes to some point and even though I know I am not doing myself any favours by pushing my body too far, I don’t care. This is who I am and nothing will take that away from me. Even if this means my AS will progress a lot faster and my quality of life will reduce quicker. I don’t care I will always push on. I am 34 yrs old, AS will not win.
Yes I am Stubborn!