Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group I need to know I'm not alone

Debi,
We've all been there and after more than thirty years I still get the blues at times which
is only natural when constant pain is an everyday event. The hardest part is accepting your A/S which believe me will come with time and it does make your outlook improve.
Just hang on in there and use this site to get things off your chest, you are not alone
Bruce

Hi, Debi,

Welcome to KickAS!!

I'm glad you found us. We may not have all the answers, but we have some of them, and we'll hold your hand through all the rest. I was able to mostly ignore my symptoms for most of my life, (maybe it was all in my head like the doctors said!) Then everything went wrong all at once. I survived with the help of my family and the wonderful people here at KickAS. Then one day a miracle came into my life called Enbrel. I hope your doctors will work with you to find the right meds for you. I've never been much for taking medicine, but this one has given me back my life. I'm not on here much since I started Enbrel, but I still like to visit now and then. Good luck and welcome again to KickAS.

Hugs,

Cindy

Life may not be the party we hoped for, but while we are here we might as well dance.

Welcome to the website.

Sorry to hear how overcome by your recent battle with AS you are. It can have its very depressing moments when it seems like you'll never feel "normal" again.

My AS is pretty lousy but I've learned after a few real bleak spots like you're in that something can usually be done to break a horrid cycle and make things bearable and even pretty good. I t may be a new medicine or a change in your routine like diet or things like massage or acupuncture.

Keep plugging away to find something. I am 3 hip replecements and one very bent spine into this disease. I have had days like you describe where I feel fairly useless but keep the faith , for whatever its worth because you can win some of the battle s with your AS.

Best of luck with your new medicine and just remember its not your last option. There are always other things to try and something invariably will work.

 
stevec-they also serve who stand and wait

Hello Debi...welcome to the site.

Dan.

>>>>>>
We are kicking some AS*.

Hello Craig....welcome to the site.

Dan

>>>>>>
We are kicking some AS*.

Welcome, Miss Debi! Welcome, Craig!

You have characterized what this forum is all about!

A friend stopped by before Christmas and asked me what I was doing. I mentioned that I used the computer to stay in touch and by going to web forums like this one. He said it must help. I said it certainly does.

Best regards,

jcwinnie

Debi,

You have certainly come to the right place! I've been lurking around here for ages and have found support like no where else. I don't post very often, but I come here everyday to see what's new. Just like you, I need to know I'm not alone in this. Just knowing that has made a huge difference in my life. I don't have an official diagnosis of AS, I've been told a couple of times that I have it and then afterward told by other dr.s that I don't. I gave up on getting a name for it, I've got constant pain and the folks here love me just the same.

Sounds like you've got a real gem for a husband. My husband wouldn't acknowledge that my pain was real for 20 years. Only after a dr. did an MRI and found a bunch of weird stuff on my spine. He sent me to the Mayo Clinic. We spent our 20th anniversary there. Ever since then he's been more understanding about it.

Take care and treasure the "good" days,

Valentine

Hello Debi...
Just wanted to say welcome and you are not alone. I was dx at 32 and now am 34 years old. It is not an easy ride but I am grateful l found KA as well. I felt so overwhelmed at the time. I had never heard of AS..only RA. I was scared and afraid of the future. I still get bouts on occasion of what if...but all I can do is look forward and fight on with the battle of AS. I wont now... or ever let it win. If you feel down, come visit us...there's always a few of us here late nighters...either in a flare..or just catching up...and we always have a cyber ear and shoulder to cry on...

Take care and look forward to seeing you around more...




Buggy

Hello Debi and other newbies

We have had so many new people joining it's hard to keep up.
You will definitely not be alone here. My husband is very understanding also and I'm surrounded by helpful caring people but I need to come here daily to at least read the posts and see how everyone is. Those are the days I'm not up to posting but it helps to read the experiences of others.

I'm 55 and feel 95 so I know how depressing it can be....so please join us often and we'll keep up each others spirits

WELCOME TO ALL

hugs,

linda

Hi Miss Debi,

You came to the right place to get things off your chest as you say. This place is excellent for learning and support and a little humor.

You may want to consider some diet changes, I find this helps me quite a bit.

I am struggling a bit at the moment.... my liver enzymes again are up and not from my medication since I was booted off my meds because of the liver (and I do not drink and did away with caffeine).

Hang in there..... learn from this website and maybe you can reverse the present course you are on. The one medication that worked very well for me before it complicated my liver was azulfadine.

Take care,

Tim

"I had no shoes and complained, until I met a man who had no feet" - Indian Proverb