Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group This is me!!

I only found out as an adult that my mum had really bad active RA all the time I was a child, and you know, I never ever noticed it. In hindsight, she was never the one who played games with us outside (Dad did that), she didn't pick us up or carry us, she had us doing things for ourselves at very young ages (getting dressed, doing buttons and shoe laces, cleaning shoes, putting laundry in the right place, making beds, picking stuff up off the floor, etc), BUT she was always around, always interested in what we were doing, and always nearby. I think we got a lot more "mum involvement" and "mum time" than pretty much all my friends did.

In a lot of ways dealing with chronic illness and disability is as much about changing your own expectations about what you do and how you are seen. If you keep on believing that being a good mum is just about being really active with your kids, then you probably are going to fail horribly, at least when you are flaring. If you think of it in the way that my mum did, that being a good mum is being around your kids as much of the day as possible, talking lots, and encouraging, then you can definitely do that and succeed, and I can tell you from having been on the receiving end that I would far rather have had a mum like that than one who played games.

Wonderful insight and post. You are so right.

That is the key. Amazing how we incorrectly anticipate what other people expect or need from us.

Countless things I thought I was deprived of doing with or for my daughters turned out to be insignificant. I have a boundless well of encouragement to give them, my smile is showered on them no matter how I feel and I try to watch as many of their "moments" as I can. Its amazing how much more involved in their lives I am than most "healthy" parents.

And of course when I can I foolishly abuse my body by doing something that I clealrly can't or shouldn't. They don't need that either but it does wonders for my dopey ego.

Welcome to KickAS and keep fighting and trying. So often when you think there won't be a break form a flare or pain something happens. I am not particularly tough and 35 or so years ago when as annihilated my childhood I would have never imagined I would have all the joys I do. Just kept going even when I really hurt to bad to do so. If a fool like me can, I gotta believe you can too.

Hi there and welcome to KA.

And thank you for prompting Sue to give you a reminder about how supportive your dear hubby is. It's reminded me too!!

As to the blood work, it really depends on which test he's referring to. If he's relying on CRP and ESR, then he should look for other indicators and make a recommendation based on those. ESR, especially, does not elevate or change much in a lot of people living with AS. There is research to back this up. There is so much other information to go on, such as how well you're moving, morning stiffness relief, and such. I hope he finds a way for you.

Warm hugs,