I was diagnosed with Ankylosing Spondylitis when I was 27, but with the amount of fusion I have they believe I have been suffering from AS since the age of 11. In my mid twenties, I realized something was seriously wrong. The list of things I could no longer do seemed to be growing continuously. I had even moved a chair into the bathroom to sit on because I would get fatigued brushing my teeth. I started sitting down on the floor, but my fellow AS brothers and sisters, you will know that only added to the growing list. It wasn’t easy getting off the floor without help. The constant fatigue was overwhelming. Normal things like holding something in my hand was painful. I was in my twenties, but I felt like my body was deteriorating. Little did I know at the time I had a constant enemy. My own immune system.
The year of 2011 has been the most difficult year so far. This last March I became sick with bronchitis. I went to the doctor on a Monday for an antibiotic. By that Friday I told my husband I felt like I was dying, little did I know I actually was. He took me to the doctor, and only a couple hours later I was admitted into the hospital. My AS had caused my kidneys to shut down completely. The first couple of days were the scariest days of my life. I put on a brave face, but at night I wasn’t so brave. I knew my AS had taken everything away from me. I knew very well I would no longer grow old with my husband, I would never be capable of starting a family, and I would have a new constant priority in my life…a dialysis machine. I sat in the hospital fearful I would never find a kidney, because a transplant would be necessary. I prayed more than I have prayed my entire life, and to the doctor’s amazement my kidneys started to respond to steroids and fluid. They came back, but I will always be fearful it could happen again.
Most people have never heard of our disease. I know that sometimes I feel so incredibly lonely. I can’t explain the pain and why it jumps from one area to the next. Some days I sit alone hooked up to a tens machine just wishing for the ability to escape from my body for just an hour. I would like to be able to do things without forcing myself to endure being uncomfortable…things that people would never understand, like gripping a steering wheel or tying my shoes. Basic everyday tasks like taking a shower and getting dressed are a challenge. The constant fatigue coupled with the inability to sleep because of pain is frustrating. Some days are better than others, and thank goodness for those days. The good ones give me the strength to get through the bad ones. I am a wife, a friend, a daughter, a sister, but I am also the face of Ankylosing Spondylitis. It may not be a well known disease, but this does not make it any easier to endure. Ankylosing Spondylitis “survivors”, we understand our fight and we feel a mutual comradery. We are a family. I am thankful for all your stories. Thank you for letting me share mine.
That is my story Cookie. Thank you so much for putting a group together where we can unite!