I understand so much of where youre coming from, my onset was different then yours in that I've been on the cusp of a diagnosis since 2009, it was an onset of right hip pain that has progressed into back, neck and shoulder pain. In June 2011 I delivered my baby, she was a large baby but I was also preeclamptic so even with my temp diagnosis of AS a C-section was a last resort. For me tho I got very lucky and it seems that my pregnancy put my AS into remission for almost two years, within the last year or so the tell tale back and hip pain has begun to return, more intense then before. Its taken for me about 6 years, to be treated as an AS patient, but even then it only happened after I had abnormal degeneration in my neck C3/4 and C4/5. It is so hard to be just 24 have a 3 yr old and like you I work, I'm active duty military, and deal with the pain and along with it the exhaustion of it all. I know exactly where you're coming from, nobody will quite understand what you go thru, youre family may just be in denial and its hard to not be frustrated with that, I was too, I mean its hard for yourself to accept whats going on with you and its personally happening to you! Its hard for anyone not in this to understand, especially because of our ages. I find that Celebrex is what works for me. I spend a lot of time sitting on my couch with a heating pad, or taking showers and baths when I feel I need to. I rarely sleep in my bed, laying in a flat position for too long does not do my body any good at all.
I've been in the constant struggle you are in, having a child that you can barely play with, trying to accept what is happening to you, dealing with a family who cant understand, giving up your job because its too harsh on your body. I cant tell you that its going to get better because you and I both know that it might not. What I can tell you that is the truth, there is a way for you, and you will find it. You will find a way to cope. Your disease does not need to define who you are. I know the worst mistake I made in this awful journey we've all ended up on was letting my disease or before my diagnosis define who I was, the pain began to take over and pollute my mind, i let what i couldn't do overpower what i could do. I let myself believe I was this sick helpless person. But in the end, I'm not. When I stood back took a breath and regrouped things began to improve, yes there is a lot that i cannot do, there is a lot that just hurts more then words can describe, but there are so many things that i can do. so many things that i am good at still. There was a lot i lost but there is plenty i have gained. You know who you are, you know what you are capable of, let your son give you strength on those days you cant find it yourself. The best advice that I can give you as you go forward is to try and keep yourself focused, keep your mind positive. Yes you have a ton going on, you have more pain then most people you know, theres going to be nobody that understands unless theyre going thru it as well. For each thing that has brought you down find in it one thing that you have gained. And lastly and more important then everything else, you my dear, ARE NOT ALONE, there are so many of us out here with you going thru the same. Looking for answers and looking for support.