Friday, 19 March 2010

Its been almost two months now since my ankle replacement, and I don't really know how to feel about it! I mean, obviously an improvement on before, but I don't know.....

I knew it wouldnt be as easy as a hip replacement, and that the months after surgery would be tough..... I still cant walk any further than I could pre-op, and its not that I've done too much walking (only 1 trip to town and 1 to the pub since my casts been off). Bbut I find myself waking up each day to an agonising pain near my heel. This may be because I do actually need another op, which is on my heel.... But its really been getting to me! And also, I've been trying to find some information on young people with ankle replacements but so far all I have found is some boring journals saying that "young" patients (aged 40!!, bloody 40!!) shouldn't have the op if they are not a desperate danny and could live with painkillers.

Though I did come to find this facebook group about ankle replacements and this guy on there claimed to be a surgeon in the US and says the youngest patient whos had this done is a 14 year old! How true that is I dont know, and it seems a bit wrong, no? 

I know I've had the op now, and maybe there's little point in looking, but basically it would of been nice to of seen someone's progress, I mean, is there a life with heels after?? Nice ones??? Not those stupid little heels that are just pointless in even pretending they are heels......

Also, just incase anyone wondered, there are a few types of replacement to my knowledge but the one I think that was used for me is the Scandinavian Total Ankle Replacement or 'STAR' which I believe is the only one that doesn't use some sort of cement? So in years to come if I need it re replaced then the process is easier. But if you are  looking for info on ankle replacement by now you may have realised the very frustrating truth that there isn't much as studies and findings are not really that old, so who knows how long this baby will last!

If you are interested in finding out a bit more but cant find anything or are a little bit lazy then try the Total Small Bone website which has a picture of the replacement all shiny and new and there is some sort of leaflet which may answer some questions you might have.

By the way, if you have had a total ankle replacement I'd love to hear your story!

Sunday, 14 March 2010

This is me

I've been so busy that I sort of forgot I made this thing!

But now that I've explained the purpose of the blog I suppose you should know a little about me!

So where to start? I'm 22 years old from the south of England. I was diagnosed with juvenile rheumatoid arthritis at the age of 4 and I'll probably set off the metal detectors at the airport........ This is because when I was 20 I had both my hips replaced (6 months apart), and just about 6 weeks ago I had my left ankle replaced........ And yes I really am 22 years old..... not a 60 year old in disguise!

The thing about my arthritis is that unlike lots of people I read about, I have had mine since birth, and haven't somehow acquired it after living a bit of a 'normal' life.... but to be honest I think maybe my way is best. Some things I have just never known or experienced so I never get to miss it... And every new step I take with better drugs, operations etc., means I can do things that I never could.... And that's sort of quite nice..... maybe that makes sense to someone...

Ive been on countless drugs, too many to even remember....and after a very fat 18 months on steroids and a very sickening year on Methotrexate, at the age of 15 I was put on Enbel. That really was the turning point for me. Up until the age of 15 I was practically wheelchair bound, and my arthritis attacks all of my joints....every single one......and this brand new sparkly drug made me feel ALOT less crappy...... and just like magic I could walk! (not much....but still!)

I know im rambling... and it may not be not all in order.... and defently not in full... but im so tired from work, I feel like i could sleep for 10 years....shame Ive got to be up early tomorrow!

Thursday, 4 March 2010

Why the hate?

'What I hate about me' is actually a bit of a deceiving blog name, because to be honest, what I intend to blog about isn't actually what I hate about myself, well, not really.... only sometimes. 

You see, I have (Juvenile) Rheumatoid Arthritis. Diagnosed at the age of 4, and now im 22..... almost 23. For the most part of my life I can honestly say I never let my my RA affect me emotionally and I sure as hell wouldn't let it stop me doing what my friends did, but as Ive got older things have changed and Ive found that over the past year or so, my life now is just a tiny fragment of what it used to be. But I'm not all doom and gloom. I just say I'm going through a super rough patch right now. 

It has at times made me wonder how other people cope with RA, so I started to search the internet for blogs written by sufferers. I found quite a few actually, but they all seemed to be written by people who had lived a 'normal' life and become affected in their mid 20's and 30's..... and they're all american (no offence, but I just wanted something a little closer to home!).  Im yet to find a blog by someone my age and by someone who's had the disease since birth.

So anyway this is where my blog comes into it all. I sort of wish growing up I could have read something that gave me an idea of how young people get by with RA... and the sort of things that could make me better or at least procedures/meds/etc that could make my life easier. I'm not saying I know everything when it comes to RA, but as you will learn, my bones have been severely damaged by it, so some of my experiences are quite extreme, and it might get a little complicated at times, but all in all I just want to prove that young people with RA can do pretty much anything anyone else can do.........

So.... Thats the reason behind the blog, I'll follow it up with a post about me and my RA shortly, but this post is getting far too long for my liking!