This is an auto immune disease that affects the joints and spine. It causes inflammation which leads to fusion. There is no cure , we are trying to slow down this progressive disease! Just because we look well on the outside Really we are suffering in chronic pain on the inside. Please dont judge us just understand that this is a real disease!! ( I did not write this 1st paragraph but it said exactly what i wanted and needed).
They say this affects our spine and hips mostly and that is ALL so many doctors look at. I have had this disease since my junior year in high school (1984). i went blind in my right eye in the 2nd half of my junior year. couldn’t read,couldn’t sleep and could hardly eat. The pain was unbearable. I prayed many times for God to just take my eye if the pain would leave with it…my mother would sit beside me in my bed and wash my eye with a cold cloth for hours….she would read my literature and history lessons to me. It is very hard to focus on studies when you are enduring something like this. I finished 34 in a class of over 320 seniors when I graduated. After 3 months of having injetions into my eye I regained my vision and 6 months later had to have laser surgery to remove all the scaring that the injections left.
I have had so many issues in the years since. Not always knowing it was A.S. I met a very good doctor in Nashville about 11 yrs ago. He knew everything I had been thru without me even telling him. He understood A.S. better than anyone I have ever met but he was a total JackAss. And I refused to see him after 2 visits. I have to deal with the pain and discomfort that comes with this disease so i do not need more crap from a doctor.
Dealing with this monster A.S. is more than just treating a disease. Dealing with pain, dealing with the fact you can not do things with your friends that they expect you to do, not being able to do things with your children, not being able to do simple task that you used to always do, dealing with depression feeling you are only half a man, dealing with not being able to make love to your wife, feeling like you are a disappointment or a burden to your loved ones……these are things you deal with and medicine doesn’t fix these things…..life becomes something you never thought it would be. It isn’t that dream you had as young person by far.
And then dealing with the ignorance of people who see you and say “I don’t see anything wrong with you”….well I would gladly share a day of my pain with these people if it would help them to better understand. I do not sleep in the same bed as my wife half the time because the heatpad in my recliner is what it usually takes for me to get just a little rest.
A.S. is a monster. It is more than a disease that affect our joints and spine…..it affects our total existance in what we call our life.
Scott Cannon I have A.S.
Tennessee United States of America