Still in limbo..

[Dogrose]

And no, I'm not shimmying under poles, not any more

I had a follow up with the opthamologist and need more steroid drops as the scleritis has come back.

Finally have an appointment through to see my Rheumy, he has sent me another letter saying still stay off the Humira (he knows I have a fridge full of the stuff, probably scared I'll take it anyway). I'm down to just 5mg Prednisolone now and my joints are really starting to play up again.

He wants to refer me to a neurologist to investigate the lesions in my brain even though he doesn't feel it is anything to do with my RA or treatment, wish I had never had the MRI now!

In the mean time I'm on little or no treatment, just the small reducing dose of steroids and co-codamol (I can't take NSAIDs).

He sent me a blood bag with loads more tests- yet another lupus test, and a few other things.

Just to add to the joy I've been told I will lose my job soon as the shop I work in is closing. I can't see anyone else employing a gimpy old cripple when there are loads of healthy people looking for work. My wages buy our food, will have to give up eating I suppose!

On the upside I have two bag of broken chocolate bits from Thornton's to work my way through this weekend, well it is Easter

[sylvi]

Why is it life is never easy for us all with ra/fibro and any other diseases associated with ra. I wish to send you a lot of hugs and some happy thoughts from me.xxxx

[Hidden]

Oh you do sound like you are putting a very brave (and darkly humourous) face on things Dogrose. It all sounds rather scary for somehow - I'm so sorry about the job. I think he should have sent you a great big easter egg with all that blood stuff - but then you'd probably end up with diabetes too! Thornton's are good though and it doesn't matter whether it's whole or broken - chocolate is chocolate xx

[miss]

Hi you sound like your having a hard time.!!!! I will send you good thoughts hopefully things will improve for you soon take care xx

[Dogrose]

Thanks all! I'm not actually too worried about the brain lesions because I have zero neurological symptoms, It could easily be something old (there is a family tradition that my father dropped me down the stairs on my head as a baby).

I'm not in too much pain at the moment so things aren't bad - It is easy to remain cheerful when you are still able to wipe your own bum! xx

[Hidden]

I know just what you mean! Tilda x

[Hidden]

dont worry dogrose, I HAD a bad side effect issue with sulphasalazine they thoogh at one stage i has menigitis!, had lumbar puncture and brain scan and started on iv aciclovir!!,

brain scan showed "white/ grey spots on my brain they didnt know what they were!! so that was that.. they were going to show me my scan on the cow( computer on wheels!) but it was broken, I dont have as far I know and they know any neurological problems x