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    Posted June 14, 2014 by
    de61
    Location
    Mesquite, Texas
    Assignment
    Assignment
    This iReport is part of an assignment:
    Living with a chronic illness

    A RN with Ankylosing Spondylitis

     
    I received my diagnosis of Ankylosing Spondylitis in 1991, ten years after my symptoms began. At that time I also received a diagnosis of Fibromyalgia. I am a Registered Nurse and living with chronic pain while doing a stressful and sometimes strenuous job that adds to the disease process as both of those can cause an exascerbation. As I do not "appear sick" I am often met with looks of disapproval or disbelief. I have dealt with pain for so long that I deal with pain well. So sometimes Doctors do not think I am having pain because I do not "look like I am hurting".
    In the meantime my neck is fusing and my spine is narrowing. My joints are red, swollen and gentle touch causes excruciating pain. We are expected to not complain because people really don't want to hear about it. And we get tired of hearing about it ourselves.
    Initially after my diagnosis I did experience depression because there were so many restrictions put on me by my doctor. I followed instructions and ended up on a walker. The diagnosis itself was not a shock but the restrictions were. After I got to the point that I decided that I was not going to give up on life because I was chronically ill and went back to doing things I enjoyed, I began to be happier and I was able to walk without the walker. I had to decide what was more important to me, enjoying my life and dealing with the pain that it may cause or not enjoying my life and having less pain. I chose joy.
    Since then I have received more auto immune diagnosis' of irritable bowel syndrome which causes me to not be able to take oral pain medicine because it causes me severe abdominal pain. Sjogren's Syndrome which causes dry mouth and eyes. This can cause tooth decay and eye disease.
    We have related my migraine's to my auto immune disease as well.
    I joked to my family for a while that if I didn't get a new diagnosis when I went to the doctor I felt cheated because for several years I was getting a new one each visit.
    I think one of the worst things about auto immune disease is brain fog. We lose words, forget things, can't think straight and for myself it has nothing to do with narcotics as I cannot take them without severe abdominal pain as mentioned. It is the disease.
    I am grateful for support groups and knowledgeable physicians. I just have a disease that is hard to explain and understand.

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