Hey

For all of you that don't know me - Welcome! I'm Frogga, I'm 22 and have full body RSD from a fall when I was 16 and now have Secondary Generalised Dystonia and HMS all of which have been really attacking me for the last couple of months, probaly since January when I started passing out all the time up until, well, now really.

I went quiet as I haven't been well enough to be on the computer in a long time. It's odd though going back on and seeing how time seems to have flown by. The baclofen trial was an absolute farce - it made me worse not better and took a long time to recover from it. I was lying in bed working a couple of weeks before the trial and my kneecap dislocated because of spasm and also pulled my hip out damaging my pelvis, hip, knee and also my foot - don't ask how!! I've got no idea.. and cos they couldn't get it to go back had months of having my legs bandaged together, botox and anything else they could come up with to try and get my stupid legs to behave slighty better. Oh well. In the end mums brutality against spasms worrked so my right leg is no longer twisted behind me when I'm in my wheelchair.

So... home now.. got the summer to recover before I start my placement and sit all my exams (missed them all through being in hospital etc). No closer to getting anywhere. Ketamine coma... every time I get hopeful it's going to happen it all falls apart so trying again to get that sorted. Been referred to a specialist neurological service thing that is supposed to be awesome at both neurological rehabilitation and helping you deal with living with, ultimately, a degnerative neurological disease (As well as RSD I also have the dystonia etc).

A question - I have RSD in my face and problems with swallowing, chewing, pain, sensitivity and the whole of my face feels like, like... like a mixture of toothache and earache just shooting through my face/ jaw/ neck every moment and where it's just so deeply painful that you can't explain it no matter what you try. I've tried heat, massage and chiropractor and it helped me feel more comfortable but it still hurts so much. I'm having to wear a snood to keep the hair off my neck and face as otherwise it burns so much from the fire but I'm fine, seriously.

Anyway... I'm around (ish) and it's so nice to be well enough to look at a computer and to be able to take interest in stuff that's going on again.. it's taken far too long.

much love to you all

Frogga xxxxxxxx (Rosie) xxxxxxx