My name is Andrea (39) and I live in New York (not the best place to live with AS). The weather here really impacts my daily life. When we go from 76 degrees to 42 and rain, I can feel the change in my body. I can feel it in my spine, my hip, my ribs and even in my left eye.
Finally receiving a diagnosis of AS
When I was 28 I broke my L5 as I was walking from the living room to the kitchen. I just fell and from there my life changed dramatically. It wouldn't be till 5 yrs later that I finally got surgery to and was told nothing about the AS.
It wouldn't be till years after that I finally got blood work and was told I have the markers for AS and that there is no cure and basically left it at that. I am now being more proactive in learning about this disease and am finally working with the correct doctors.
Awareness for ankylosing spondylitis
I just want more to be aware of this disease. People look at me and think "there is no way she hurts like she says she does" or "she wouldn't do the things she does...". But the reality is I am going to hurt if I do them or not and I can't allow this disease to stop my life completely.
They don't hear me crying at night to my husband because my ribs hurt and when I can't sleep. They don't see the hours of stretching I do to keep my body from becoming completely stiff. They don't see my medical bills that add up from new therapies or medications that I have tried.
What you can't see still hurts me
I get that it's hard for people to understand things they cant see, this is why I am starting to be more open and expressing exactly how AS impacts my life and in turn, impacts the ones around me.
Do you use the word disability to describe your AS?