Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group What is "life with AS"?

Stacey
Keep a positive outlook,if you don't have one.. work on it...I have
had the oppertunity to meet quite a few members of KickAS over
the years..The positive outlook plays a big part in being able to KickAS,
Maybe you have been dealt a bad hand of cards,but you are still able to
put on your"Poker face"...If life is 75% bad,enjoy the 25% good..Keeping
a positive outlook under the darkest days is NOT the easiest
thing to do...

I do hope you get the great benefits from Embrel many in this forum get..
Perhaps it will hold the disease at bay and keep it from progressing
any further than it already has...Sounds like you finally found a good
doctor..

Like the other posters have already told you...Check out the other forums
on NSD diet,helpfull hints,pharmacy and the others if you haven't already...

Good luck!!!!!!

David

Hi and welcome Frogdog

My best advice would be - as others have said - try to keep your chin up

Also, although you will often not feel like it, try to keep active. So many times you will feel like just going to bed. For me this is not a good route. Keep yourself active, without over doing it. Look through the forums here - somewhere the excercises are posted - these are good to keep up in order to maintain your flexibility. Swimming has also been a great help for some of the folk here. I am dying for the day that our town gets an indoor pool.

Others have had great relief from Enbrel.

By the way, I stayed at a bed and breakfast once - called " The Frog and Dog "

Take Care
Maggie

Welcome to KickAS Stacey.

I can't add much to what the others have already said. I'm new to this disease as well, dxed just over a year ago. I've had symptoms for 30 some years. It's a bit of a relief to know that it isn't just in my head. I was begining to think I was nuts. You're lucky that you were dxed now rather than years and years from now. Let the treatment begin. Life can be pretty normal if you take care of yourself.

Posture, exercise (I swim alot), stretching and this website are great starters for pain relief. If you have a good doctor he or she will handle the rest.

Welcome to the family.

Fred

"It's not the size of the dog in the fight....It's the size of the fight in the dog" - Mark Twain

I've been living with AS for 30 years now, been through the ups and downs, and can honestly say living with AS is a lot like just plain living, develop your coping skills, think of the glass as half full, explore the new disease modifiers out there - - which can allegedly not only relieve the pain and the inflammation but prevent further damage to your body - - and try out the low starch diet - - you can go no starch but I stick to low starch as it seems to help just as much for me without the deprivation of missing out on a lot of fruit and veggies. I'm on Arava, one of the newer drugs, and just like Lori said about Enbrel for Eric, it has been my miracle drug. I swim an hour daily, work out at the gym three times a week, sometimes get a bit stiff but with all the exercise it doesn't happen too often, usually when I sit too long or stand in one place, and it's due to mechanical damage - - fused SIs, neck also has lots of disc space narrowing and stenosis.

Undifferentiated is sort of like AS without the fusing, it's in process but no damage shows up on x-rays. That's what I had for years, and yeah, had more than one referral to a shrink to talk about my "imaginary illness" Try to get the symptoms under control, eat well, exercise, and come here for the best support on the Web or anywhere else for that matter.

And do join us at the women's forum if you want the racy stuff

Cheryl

If you can't be a good example you'll just have to serve as a horrible warning.
Jennifer Cruisie

Dogs don't want to know about every other dog you've been with

Stacey, I think the best advice I can give you is to get as well informed as you possibly can, keep the information that best fits your particular case and let the rest go out the other ear. At least, this will help when it comes to your current confusion. There is so much information coming at you right now, and absolutely none of it fits your description of your own life as you see it at this point.

I remember when I was first diagnosed two years ago. Part of what I felt was relief and part of it panic. I was hearing about people being bent over like a question-mark, the spine fusing so I would have no mobility, my ribs fusing to my spine so I wouldn't be able to take a deep breath , my heart could get involved , eye involvement, I could end up permanently disabled in a wheelchair or on a cane for the rest of my life. I could fix it using diet, exercise, herbals, pharmaceuticals, chiropractic was good, chiro was bad, I was nuts for trying to treat it holistically, I was applauded for trying to treat it holistically, the drugs they would want to give me would help, they would hurt in the long term, I'd get ulcers, GI tract lesions and massive liver damage, some would make me double in size, others would kill my kidneys, and the ones that wouldn't do those things might give me cancer!!

At one point, I thought that all of this was in my future and that really freaked me out!

Fact is, Stacey, that it's not all in your future. Each case of AS is as individual as the person who has it. Learn as much as you can, and then listen to your body. Nobody knows what you are feeling and how you are reacting as well as you do. If someone tries to tell you that a certain treatment is going to work for you, take it with a grain of salt. Try it, sure. But don't think that you are weird or something if it doesn't work for you. Not every treatment works for every person. DMARDS like Enbrel work for some people beautifully, but not for others. Sulfasalazine works great for some with minimal side effects, while for others it has awful side effects. NSD/LSD work wonders for some people and don't help others at all. Some people are capable of more aggressive exercise plans than others. It all depends on you and what you are feeling on any given day.

It isn't all doom and gloom. But it's not a bed of roses either. Just take it one day at a time (some days it'll be one moment at a time) and look forward to the day when we are all completely pain free.

Many hugs,

Kat

Hi And Welcome to KA! I think the best advice anyone could give you is to stick around here. The knowledge and support is the best you will get anywhere.
Your story sounds so familiar to many of ours. I too was your age when I was diagnosed and I have never heard of AS until I got my diagnosis. I then found this place and learned so much. Not only about AS and all the medical stuff, but about myself and others.
It's hard to say exactly how AS will effect you in the future, because AS is so unpredictable. For some it's nothing worse than some aches and pains in the morning, and for others (I won't lie) it can mean ending up in a wheelchair.
You got some great advice from others here and I have to agree that one of the best things you can do is learn as much as you can about the disease and treatments. While you're learning about all that, try learning more about your own body too and focusing on getting to know it better.... it's likes and dislikes and then you will know what to watch for and what's best for it now and in the future.
KA is a great place to be and there are so many wonderful people here ready to answer your questions and help with concerns. Most of all here for support, because we all know how confusing AS can be and how overwhelming it can get trying to understand it all.
Again welcome and I hope you decide to stick around.
Hugs,
Lisa