Archive | October, 2012


29 Oct

Please forgive me, this is another not-particularly-positive-post… Sorry!

I was looking at my outfit in the mirror a few weeks ago, and noticed something I never wanted to see again.  My leg, which was once totally straight after the Taylor Spatial Frame surgery, is no more.  To say it has reversed back to its original ‘knock-kneed’ position would be an exaggeration, as it is nowhere near as bad as it was to begin with – but it is most definitely not totally straight anymore.  I’m guessing the bones are still straight, but the knee joint is so loose/flexible in sideways movement that it cannot support the leg in a straight position. 😦  I’m so disappointed about it.  I thought that going through all the surgeries I’ve had would ultimately result in straight legs. Which it did, for a while… but it obviously isn’t going to be that way for life.  I can only hope it doesn’t get much worse.

I was somewhat hoping that it was just me, and I had imagined it… but I mentioned it to both my Mum and Granny, and both agreed that no, it is no longer straight.  Now I’m beginning to wonder whether I’ve put myself through these surgeries unnecessarily if the end result isn’t permanent. Should I have just not bothered and settled for what I had?!  This is so disheartening… not only is the pain from my hips increasing, but now the whole form of my leg is getting worse too!

When will this end? If at some point during my lifetime, leg transplants are an option – trust me, I’m going to apply to have it done! ha ha!




Pain, you are a pain!

12 Oct

Warning! Negative post. 

This cold wintery weather is doing nothing for my hips and knees… or the rest of my joints actually.  On holiday in the sunshine, I was pain free – it was fantastic! I come back home to rainy old England and boom! pain.  Being stubborn, I simply refuse to take painkillers… but it has definitely got to the point where I am actually looking forward to having my hips replaced (hopefully in the long term it will mean less pain). 

I’m convinced this joint pain is much worse than it was last year… and I’m concerned. What if it continues to get worse year on year? I’ve heard of people with Pseudo being in so much pain that the only solution has been using a wheelchair… and I so desperately don’t want to get to that. It is already interfering with my life at the moment. I’ve just started the fourth and final year of my degree. I live a 5 minute walk from the department all my lectures are held in. Can I walk there? No. I am having to drive, and it’s a nuisance. The same for going to see friends, going to the pub, going on nights out… I have to drive (or pay for a taxi!) to get to the location, then use crutches to get about once I’m there.  Oh how crutches get in the way! I can’t dance in a club with them, I can’t carry a drink with them, I can’t even carry shopping with them. Now I rely on them so much, I realise how lucky I was to have a few years where I could get away with only using them for long distance walking! I’m getting so annoyed/frustrated/disheartened about this… it’s properly getting to me, unlike anything related to the condition ever has before! 😦

Apologies to anyone who thought this post may be worth reading, and it is in fact just a rant – I’m just so frustrated with this pain! Why won’t it go away?!?! 😦

Still, all is not lost – I have been sent the letter saying the referral to the hip surgeon has been successful and I will have an appointment booked soon. I was offered one this month, but I am busy with studies, so I have asked to postpone it until the Christmas holiday break… I can’t wait to discuss the problem with him, and hear about what can be done – and what benefits a new hip might bring! 🙂



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