Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group New member looking for friends!

Hi everyone!

I was so keen to shake off my "lurker" status that I haven't introduced myself yet! I was beginning to feel like I should be wearing a raincoat and sunglasses!!!

OK, so I am 33 years old and mum to 3 little girlies aged 6, 4 and 18 months. The older two LOVE Tinkerbell - so that's where the username came from! I usually use the name Cupcake because I LOVE baking, but that did't seem appropriate for this website!! It would be a bit like going on an AA website and calling yourself Tequilla slammer!!

I have a wonderful husband - who met a fit, healthy, carefree girl in high heels (pre AS) and ended up dating a "little old lady" shuffling round in slippers and in constant agony! Luckily for me nothing scares him off!!

About 10 years ago I started to get a "restless" feeling when sitting, this quickly progressed to pain in my lower back and down my left buttock, my toes started to swell up and were so tender and painful I could soon not wear shoes at all. I saw a specialist who tried many approaches to my condition; physio, cortizone injections (in my toes - ouch!) and finally he decided we had no choice but to go down the drugs route.

It was at this time that I heard about Prof. Ebringer from a family friend. I got a referral and he diagnosed me straight away as having AS!

Initially I was so excited that I had a name to go with my symptoms. But then came the news that I had to go on the NSD. I might sound very ungrateful - but please bear in mind that at the time I was a vegetarian, smoking, starch junkie and Dr Ebringer delivered the news that I must eat meat, give up smoking and all the food I love best!!!!

I was in denial and I so wanted the diet to fail so it meant I didn't have to give up all these things. The first thing I did when I left his office was go and get the biggest yummiest sandwich I money could buy! I wanted to feel like I had some control of my life back. AS can make you feel so helpless and so old. But after 3 months my AS went into remission completely!

I am SO grateful to Dr Ebringer and his amazing research. I feel so lucky that I was diagnosed so quickly and have no lasting damage (yet) I do not take this for granted having read so many moving stories - they are very humbling.

I joined this website because I have had an attack of AS which started 2 weeks ago. I am trying to control it by going strictly starch free again.

I didn't know anyone with AS until I came on this site and it's very important to me to try and help and support others.

Lots of love and best wishes to everyone on this site. I look forward to getting to know you better!

Hi Tinkerbell,
Welcome to KA you will make plenty of friends on here and get good advice. You will also get a laugh a few of the members on here are a bit mad I wont mention any names but some of the women are potty. Sorry your having a flare I cant comment on the NSD diet because I dont do it but Im sure some one will comment soon.


Kevin

Hi Tinkerbell.

I am looking forward to being your friend. If you have been lurking for a while, you already know what a wonderful group of people this is.....regardless of what Kevin indicates. LOL

I will be glad to get better acquainted with you. Come often. I haven't been here a lot lately due to husband having surgery and me having a terrible RA flare. I am going to try to do better. I miss everyone.

Have a great day.

Possi

hi tinkerbell, very nice to meet you. if you love cooking there are heaps of very nice muffin / fruit berry slice type recipes. i make fruity ones, sweet chocolate ones, dried cranberry tarts, im going to have a massive bake up tommorrow. . best of luck kickin AS

welcome to AS site i like you was a luker for awhile but i had to get rid of that. But sense being her i've made qiite of few friends that help me through my ups and downs with this auto disease. wouldn't wish it on anyone but looks like quite a few of us got a lot in common. enjoy your new found friends on this site.

Hi Tinkerbell,

Welcome to this wonderful site. I am probably one of the women that Kevin is referring to as "potty" but the truth of the matter is that Kevin and his friend Alan Ineptwill are the pottiest of all and will keep you in stitches for hours, given the chance. I think Alan may be the oldest person on the site - we've heard a variety of ages postulated for him - 85, 92 etc. but it's difficult to judge because I believe he had a titanium face lift a few years ago. However, he is as flirtatious as a 20 year old so you need to watch out for him. Kevin is convinced that he is twice as "brainy" as any of the women on the site but we've seen through that and know that he has the typical man-sized brain - larger than those of women but, of course, as we all know, that's due to all the empty space in there.

Everyone here seems to have a phenomenal sense of humour to the point that I've wondered whether humour is carried in the genetic code for AS and other inflammatory arthritises.

A few of us have rheumatoid arthritis instead of, or as well as, AS. We have just started a new RA forum specifically to help those with RA. This is such a wonderful site and there seems to be nothing comparable for those of us with RA, so I'm very grateful that we have an opportunity to develop an RA branch.

Hoping you have a good time here.

Hi Tink! It's great to meet you. Where are you from, and why are you in France? I noticed you said "learning to speak French" on your profile . . . lol.
Your husband sounds great, hang on to him! Do you have a MySpace or a FaceBook with pictures of your family? My little girl is 15 months old and we're having such a blast with her, but I'm in an awful flare right now too and chasing a toddler around is so difficult, you poor thing chasing three youngsters around! I really hope you can break your flare soon.
(by the way, I'm definitely one of the "potty women" lol)
Congrats on discarding your trenchcoat and sunglasses! heehee
htbl,
Bridget

welcome aboard!

good to see you are meeting all our characters ......

i mean personalities!

I will be your friend I have AS in my feet too. What do you do for shoes now? I have a hard time finding them myself.

Craig

Welcome ti KA. You will find yourself at home in this site. You'll have a shoulder to lean on to. You will find friends to talk to on this site. Hope you could control your Inflammation attack as possible.

God Bless

Joemar
Philippines