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
