Wednesday, 14 April 2010

special treatments

After the first conventional methods of treatment appeared to have no effect on my symptoms the docs cranked it up a gear. I was to be put forward for a treatment called anti-tnf, a relatively new treatment that a specialist nurse decides if your eligible. I was interrogated, proded and poked for two months to ensure my condition was bad enough to go on it (apparently it costs the nhs a lot of pennies!) so finally when i was told it was severe enough (didnt know weather to laugh or cry?!) I started taking regular injections every 2 weeks. I felt like a bit of a junkie if im honest having to administer the injections myself but it was almost like a miracle as 2 weeks after i started, i felt an improvement. I thought i could see a light at the end of the tunnel! At last something worked. Now i know some people go for years through trial and error of meds and I suppose thats the one good thing about being younger when diagnosed, the docs want to get on top of it asap so you dont end up looking like golum in later life.
For the first time in ages I could go out with my friends, go shopping, even drive and I felt so positive about the future. I still wasnt 100% dont get me wrong but compared to being bed ridden it was like a new me! I was still tired all the time but I powered through it to try and grasp what little of a social life I had left.
Weeks and a couple of months went by of me gradually building my strength back, still having the odd bad day but I concentrated on the good ones to get me through. I was even thinking of trying to get back into work, maybe part time to begin with and build it up. I had my 3 month assesment to check how my disease activity was (now when I went for the assesment prior to treatment the score was off the charts) and it was working! I was so happy I wanted to scream!
Now, not to put a downer on it, but this is where it started to go horribly wrong. Almost a week after seeing the specialist for my assesment, I felt strange. I started to get those nasty sausage fingers back and pain slowly crept into every joint again. To top it off I had so much fluid appear on my knee it was practically the size of Africa! I had to have steroid injections to try and ease the pain but couldnt do anything about my treatment untill my next assesment, in 3 months time.
Three months of agony and a slippery slope back to where i started, the nurse ran the tests again and the results were worse than the first time before i started the bloody treatment. "I'm afraid its failed", she said. Failed?! I wanted to cry, how could this happen? I was told its not unexpected for this to happen as some people respond to the treatment initially but then it fails to attack the disease. So I had stuck those flippin needles into my legs and tummy for 6 months (gathering a patchwork of bruises along the way which I had to try and explain to people) for absolutely no reason?! What now?!

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