Hello Wendy and Kat
Kat I'm so glad you're enjoying our chat - me too! I hope your suggestions work for Wendy. How are you doing at the moment? Do you have particular problem areas that give you trouble? My feet, lower back and neck are the most affected.
Wendy - having to try out meds like that for 6 months at a time must be so demoralising. I so hope you find something that helps you without being very damaging to you in other ways. Some drugs are such a double-edged sword aren't they? Promising to help you in one way and then stabbing you in the back in another.
You need all the self-esteem boosts you can get when you have a disease that makes you feel so old and frail before you should (RA and AS) - I don't know about you Wendy, but adding something else into the mix which lowers your self-esteem still further seems like kicking you when you're down.
The pred making you feel all horrible and bloated just gives you something else to carry on your shoulders. When I was diagnosed with AS I also had the worst eczema imaginable on my face (it got infected at one point and I woke up one morning and couldn't open my eyes because my face had swelled up so much!)
I could just about cope with the AS but the eczema was the thing that really hurt! I think it's a girl thing - I'm not vain but I've got my pride and the eczema somehow made me feel I'd lost my dignity. I went into work one monday morning and one of the men in the warehouse said to me "what happened to you at the weekend did you fall in bucket of acid!" I went straight back out the door and didn't come back to work for a week - I was so mortified and upset. Usually I would stick up for myself - but when your self esteem is so low you just can't take it can you?
I never realised what a huge differnce it would make to talk to others that understand you feel and vice versa. It's as important to support others as it is to be supported yourself because you get that feeling of fighting it together as one big team.
It's so nice to talk to you!
Big hugs to you both xx
