6 weeks ago today I left hospital after 9 days on the ward.
I couldn't stay anymore as there was no more they could do for me and my mum agreed to administer all the drugs and nurse me.
As some of you know I haven't been on here in a while as I have and still am quite poorly.
I still have oral morphine every 2 hours and need my wheelchair to even get to the toilet.
Aged 24, I need my mum to wash and dress me even get up in the night to take me to the toilet.
I take a lot of medication and whilst in hospital I finally qualified for enbrel. Week 7 of the injections and I haven't seen any change what so ever, in fact my elbows didn't hurt before and now they do so I'm worst.
I've read all about these miracle anti tnfs. Where's my miracle??
Having seen no improvement and still being in pain I went to the consultants yesterday, I was there an hour and the only thing I came away with was an appointment in 4 weeks because I need to wait the full 12 weeks to see if it works. Somebody please tell me this is wrong???? I can't live like this for another 4 weeks.
Also since my last injection I have developed a strange hardness all over my body. I am on 40g of prednisalone which had already made me balloon from a size 12 to a size 20. I was fine with this it was liveable. This new hardness is so painful and restrictive, I look like a little wrestling figurine if you don't laugh your gunna cry hahaha.
Has anybody else had this hardness? Is it a reaction to the enbrel?
I spoke to the consultant who just didn't really respond about it and brushed it away which makes me think it is a reaction to the enbrel but she doesn't want me to stop it just because of that and won't say it to me?
As you can tell I'm totally confused by the hardness. It looks like hard cellulite, all over my arms, thighs, belly and I look like I've had a boob job because of the hardness of them.
I went to my gp today who took one look at me and said my disease is out of control and she is not even gunna look at me, I am too ring my consultant first thing in the morning.
Please help, even if you think it's unimportant please post incase it helps.
Also apologies to everyone who was worried about me and messaged me. Thank you all for your thoughts I wasn't being rude I just haven't been able to type.
Off to rest my little fingers now.
Fingers crossed some of you no about my hard wrestling figure