Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group new to forum and mom of 21/2yr.

Hi Lisey,
I'm quite new to the site as well, but there's plenty of excellent support within this group! Anyway I looked after my son from the age of 18 months whilst my wife worked full time, due to circumstances, he's now a fantastic 8yr old. He kept me alive & focused whilst I was trying to come to terms with my AS. I know it seems difficult now, but your son will bring so much joy to your life & will help you to focus your mind off AS. Stay positive! If I can manage a young son I'm sure you'll do a marvellous job.
Good luck for the future & best wishes.






The key to living with AS is acceptance!

Edited by BOROBOY on 11/03/03 05:43 PM (server time).

Thanks Sally

Today I do not feel alone anymore.
I am joining the womens forum, their is alot of question that i have for that forum
thanks

Lisa

Hi Lisa,
Sorry I missed welcoming you when you first joined. Been having PC and satellite trouble that last couple days and I am trying now to catch up on some of the post I missed.
Sorry to hear that you have AS, but I am sure you're going to love it here and fit in perfectly. Anyone with pain, a sense of compassion and and a sense of humor fits in here
As far as tips for the kids. I was lucky that my kids were teenagers when I was diagnosed with AS. Although I have had pain from AS for a long time, I fought it hard and tried my best to keep up with them.
I found that honest communication was the best and letting them know that mom was only human and somedays she just needed to rest. I still did my best to keep them entertained while keeping immoble during those times and also taught them ways to entertain themselves. It is important to teach them that independance even at a young age, but at 2 1/2 I know that can only go so far. But even that little bit of time that he's entertaining himself is down time for you, and the more you praise his independance the better he will feel about himself and the more he will do on his own.
Maybe see if a family member can help out now and then when you feel you really need to get some rest. Sometimes just a little bit of it can go a long way and it's important that you get it. If you keep going and going without the rest, sooner or later you will find yourself down for a much longer period of time, so taking that little bit now and then will really pay off.
I know we all want to be super woman and mom's but we sometimes have to face the reality that we're not and just hop in the tub for a couple hours.... CALGON TAKE ME AWAY!
Anyway, that's all I can think of for now. If I think of anything else I'll be sure to share, but it looks like you already got some great tips from some of the others.
Again welcome! I am glad you found your way here and I hope you stick around.
Hugs,
Lisa
PS
Great name

Hi Lisey,

Welcome to the site! I am glad you are here, not glad of the reason. You will find wonderful people here just like yourself going thru alot of the same things you are. I have 4 children Tiffany 20 she just got married last month. Her husband John Mark and her are college students. He has his degree, working on masters, she is in school. Rachel 18 she is in college, Victoria 9 she is in the 4th gr. and our little prince Ethan just turned 6 and he is in kindergarten. My husbands name is Bill. We have a 4 ft Iguana named Tanner, a winnie dog named Howie, A 20lb cat named Ashes, a baby cat named Amy, 2 turtles and 3 fish....wheww. no wonder I have no energy...lol

Everyone is great here. Just let us, someone or me know when you need to talk or just need a pick me up.

Angelmom-Lisa

Hi Lisey!
Just wanted to say welcome!
I am a mother of a nine yr old daughter, three yr old daughter and three month old son. I am still searching for the same answers !

As is a trying disease so it just varies on your schedule and if you have a partner to help you out. Mornings are the absolute worse for me. I am so stiff and so slow. My hubby leaves in the wee hours so he'll leave me the wipies and diaper nearby. And a warmed up bottle since my son wakes up a little after he leaves. This helps me tremendously and avoid me falling since my feet get very stiff. My little one runs to me all the time since she knows momma cant move very fast. And my oldest has learned to make quick snacks after school if I'm very stiff. Take a nap when he takes one. IF he takes one. My girls rarely do.

Well, I've rambled enough! Feel free to pm me anytime!



Buggy

Lisley WELCOME.I don't think i could run after a 2and 1/2 year old.Buggy on thi site i don't know how she does it Pm her I laugh at all the stories she has told.My three sons were hard when they were young but NOW THERE A BLESSING.
Bradford

To the world you may be one person,but,to one person you may be the world.

Hi Lisey

I am the mother of a 14yr and 12 yr old, but of course I was a mother of a infant and 21 month old. I can't really give you much advise. I just did everything out of necessity. I never wanted my kids to see me suffer, so I never showed the pain and I never slowed down. It wasn't until May of this year that my kids really saw the kind of pain I was in. Their faces and the realization of my pain, was more painful to me, than the AS. My only advise is, you may want to get on an TNF suppressant, like enbrel, remicade or humira. Remicade was my miracle for 2 yrs. Also keep coming to kickas for support. They will really help you get through some tough times and they can empathize with you. You may want to visit the diet forum, and go on the LSD or NSD diet. It didn't work for me, but it has done wonders for others.

P.S A long warm bath at night or a heating pad in bed help a tad once the little one is down. A tad is not a lot, but it is better than nothing.
Sorry you have AS and had to come to kickas, but I am sooooo glad you found us!!!!!!!!!!!!!Hang in there.

Hugs

Simone

Hi Lisa - Welcome to KickAs. As you have already experienced, this is a wonderful site with people you will feel are an extended part of your family. Sorry you have AS and are struggling with a little one but you will have help with all sorts of survival methods here. Love - Helen