So it all stared back in 2004. I weighed 150lbs and it was the first time in my life since i had left my first life behind that i was truly happy inside and out. I was remarried to the most loving and caring man I have ever met. And then after 3 good years I started to feel this really bad feeling in my chest and my ribs. After that it was my tail bone and then my neck, right shoulder and let’s not forget the almighty feeling of fatigue and depression because it all happened so fast and I now find myself wondering “what the hell?”
You see I used to be so super active. To tell you the truth…….I never slowed down. I showed my love by taken care of my family which consists of three boys and my husband. We have nice place and plenty of yard and river front beach. I would make sure everything was “perfect”.
And now, now i can barely do any of these things and I live in pain not only from my A.S but the pain of watching my boys and hubby watch me and feel helpless. I would have to say that this is the thing that hurts my heart the worst. They never asked for this disease to be in their lives. My husband has been the most wonderful person in the world thru all of this. He has never made me feel like I am any less than the day he married me. And my boys. Oh how life would have little meaning without them. They are no longer little boys. My youngest is 17 and my oldest is going to be 23 in june and my middle man is going to be 20 in july. They still live at home because they know I need them.
I try to figure out why or how did this happen. Then I go thru the “what kind of life is this” pity party. To the days I can only go from my bed to the couch and back to the bed. Have you ever just wanted to sleep thru the pain? But the pain is what keeps you up every hour on the hour.
Now we have this wonderful place where we can see were not alone. Unlike when i was first told i have A.S. I was in denial for the first 4 years but I also was seeing so many different doctors and now one could figure out why I was in pain. There were even doctor that told me many different things before I finally got a Mri with contrast and my spine and neck lit up like a glow stick and my neurologist told me I had A.S and that she was so sorry because the only thing they were able to do for me now was to try to keep me comfortable. Me and my sister-in-law walked out bawling and i made her promise not to share the bad stuff with my husband.
I hid it for a long time but I wasn’t able to do that for very long because the kids got older and next thing you know two of my boy made it thru school and they now were home to see just how bad my days really were.
And I am now here to this point. 8 years after my diagnoses of A.S and I may feel useless and sad and like I have no place in this fast paced, crazy world. But then I find new friends who really understand and web sites like this one. This web site and cookie have made me realize that even tho things have changed I am still the same person I have always been. Just a little slower and not so upbeat. But I do have a purpose and it is to share my life and pain with everyone so that if only one person is helped because i shared my pain then having this monster inside me is ok. and I am at peace with it.
Please just always remember that we are strong, in fact I find it hard to believe that I have made it this far to just let A.S make me quit. Share you pain, your love, your journey, and know that We are the Faces of the strong and mighty too not just The face of A.S. I am not alone in this world of pain.. I am a “Face Of Ankylosing Spondylitis.”
Thank you God for everyone who reads this, everyone who writes their story and mostly my men… thank you so much.
Washington, United States of America