My name is Jessica Justice and I am 42 years old. I live in a suburb of Atlanta, GA. I have 3 children and 2 grandchildren. Looking back, I started having symptoms probably in my late teens/early 20’s. But once I hit my 30’s the pain really started getting severe. I would be overcome with extreme fatigue, and had so many aches and pains. I was officially diagnosed with AS almost three years ago. I am HLA-B27 positive, have had hip surgery to remove a bone spur and try to repair my labrum, most recently had a 2 level cervical discectomy and fusion. I have been unable to work full time for a little over 2 years now. I had to give up my home embroidery business in January of this year after even working part time has become too much. I’ve applied for the second time for disability and am awaiting their decision. I have really tried to focus on being healthier. I try to eat mostly foods that are all natural and pesticide and hormone free. I enjoy doing arts and crafts, gardening (have had to move to containers up on a higher level so I don’t have to bend) and sewing. It helps me take my mind off the pain. I also love to travel. Again, I’ve had to make some adjustments. I always get wheelchair service at the airport and I’ve rented a scooter at the destination so I can do the browsing and sightseeing with the rest of the family. Doing these little things helps to conserve my energy and keep pain levels lower. As a child, I had every childhood disease that came around. My mom has AS also and can no longer turn her head. My aunt (her sister) has it also. Those are the confirmed people. I suspect that my grandfather had it because he had such bad back problems. He became addicted to pain meds and was on disability for a long time prior to his death from a heart attack (he was a heavy smoker also). The fear of addiction is why I try to take pain meds so sparingly. I tried Remicade last year but after infections that wouldn’t go away I can no longer take it. I had TWO tonsillectomies last year. I had my pallatine tonsils removed in April and then the lingual tonsils in November. I still had a sore throat and was diagnosed with a sub-class immune deficiency. I get IVIG infusions every 4 weeks to treat this and it has really helped a lot. No more throat infections! I have also tried Simponi with no improvement and am now starting to try Enbrel. I try to stay positive and look at the bright side. I may not be able to do what I used to but there are still things I can do. It’s difficult to help others understand what you are going through when you don’t look sick. I hope that if we can’t have a cure, we can at least have better remedies for coping with the pain and limitations from AS.
Marietta Georgia United States of America