My name is Rachel Tew. I have had ankylosing spondylitis for awhile now. I was diagnosed since March of 2013. I have had it a lot longer now that I know what I have. I had a neurosurgeon that diagnosed mines after I had a tumor removed. I seen people go in a lot for back issues so I ask him. Well he sent me for mri,and ct because my lower spine was swollen very bad. After my test results they called me into the office and referred me to a rheumy doctor. Who started me on sulfasalazine that day. I have special needs child which is now 13 for several years I thought it was part of lifting her so much. I blame fatigue on the tumor etc. After they said that ankylosing was causing so many problems after years of eating aleve,advil.bc powder I knew which wasn’t healthy but with a kid like my oldest I never took time out for my health problems as much until it got so bad that I couldn’t hold it in no more. The tumor stuff I have had off and on since I was 14. I know it but these symptoms was not like the tumor cholesteatoma which I have had 5x. This prevents enbrel etc for me. Sulfasalaizine is risky enough but what can I do. I guess deal with the future when it happens. The problem I have is trying to vent to family and friends. They don’t understand much about this condition. My mama side had a lot of RA family conditions but when my grandma died when I was young I lost contact with them. I remember her having RA and my brother who she raised also but went somewhere else after she died. I am at my boyfriends family house now which he is a caregiver too his folks. I try to help as much as I can there are days when my back says this not happening today. He has help me with my daughter as much as he can when I tell I need it. I am not the type to ask for help but this stuff is teaching me everyday. My medications are sulfasalazine,methocarbonal,tramadol,3aleve 3x a day,if it was for my adhd meds the fatigue would be worse.I still get to move better then I did but I have my days. I am 31 parent of 3 kids one special needs. I just want to be able be a mom to my children and watch them grow up. tired pain,people don’t,tired of this being not out so those behind us can get treated early.
My email is firstname.lastname@example.org
Georgia, United States of America