Face 1045 My name is Cindy. I am 34 years old and live in New York. I was diagnosed with AS about 4 years ago. I have been battling the symptoms of AS for the past 11 years. The major pain started in my back after I had my daughter. When I went to the doctors probably 3 years into pain they started putting me on every drug you can imagine or at least that’s what I thought of the time. After a couple years of that with no relief I stopped going to the doctor and threw away all my prescriptions that never help it only made me feel worse! I think there was a six year period I just sucked up the pain and went out partying a lot trying to forget about it until it got to the point where I thought maybe something seriously wrong with me, so I went back. When I went back 6 years later they told me that I had what’s called ankylosing spondylitis. I thought why didn’t they tell me this sooner. In that visit they took blood work which they had never taking blood work from you previously. They never said the words ankylosing spondylitis before but tried to play it off like they had like they had diagnosed me all those years previously. In any event I was completely numb, scared, confused, you name the emotion I had it! The doctor I was seeing was so rude and mean and condescending when I told her that I did not want to take the injections, that was after I had done a lot of research and did not feel comfortable with a potential outcome . So in that moment when she realized but I refuse that treatment that she suggested I went from patient to leper so to speak. She didn’t want anything to do with me or had no other form of pain relief. I asked her if she thought changing my diet would make a difference and she laughed at me. You think I’m kidding but she did she actually laughed at me and told me that the injections were the only thing that was going to help me basically. I have never felt so attacked, degraded, I honestly can’t come up with the exact words she made me feel just so negative awful! I remember leaving the office and calling my mother and sobbing all the way to work . I told her I had never felt so alone in this journey pain and suffering. That a doctor that is supposed to be my advocate I felt like was against me not for me! Next year was the worst year of my life. I went into such a mode where I was so scared and felt like this was a death sentence. I lost my fiance mainly because he wanted kids and I felt like there was no way I could ever have kids with this disease. I lost some friends I felt so alone in this world. Still some days with this disease I do feel completely alone . I watch my daughter look at me while I’m in pain and feel awful that I can’t hide it from her. I’m probably one of the strongest women I know a lot my life and I’ve always come out on top with a smile. Since this diagnosis I don’t feel like that same person. I lost a lot of that inner glow. But I have faith and that gets me through many days and night. After doing a lot more research I realized that I have had this for many years. When I was in my early teen years I had to stop playing sports. My wrist so much pain and inflammation that I couldn’t even move them. They hurt just to touch them. I don’t want this for a few years many tests and I could never find out what was wrong with them. I truly believe that when it all started but then it went dormant and I didn’t have any symptoms until after I had my daughter. Now and again I still have problems with my wrist both of them but nothing like it was back then. I always felt like everyone thought I was making it up because there was no visible signs an issue like tendonitis or broken bones or anything. The teenager that was pretty rough thankfully my mother knew the pain I endured and believe me and knew I’m actually a very tough person. Recently now I’m to my third rheumatologist I was just told that I do not have ankylosing spondylitis. Reason being is because I do not have anything using yet. I have every symptom I show signs and every other way except a few things so she took away the diagnosis that took me years to find. She also told me have what’s called undifferentiated connective tissue disease which is another autoimmune disease that’s just not developed yet. So as you can imagine I’m as confused as ever and this journey of pain and suffering on pretty much a daily basis. I could go on and on but I’ll leave you with this…. Where the hell do I go from here?

New York, United States of America


One Response to “Cindy”

  1. Dear Cindy,
    Thank you so much fir sharing your story with us.
    Sincerely Cookie

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