My first symptoms started in February 2008 before my motorcycle accident in March 2008. I did not link the symptoms until many years later at my Rheumatologist Appointment.
I went to about 20 doctors and 2 Knee and Back specialist before my GP in Melkbosstrand, South Africa made a comment about it and booked me with a Rheamy in May 2013. When all the blood test came back I was crying, I was relieved to know that this wasn’t in my head as so many Doctors told me, there is a name and I started doing research. What started out as everyone blaming my Bike accident and imagining the pain started before the time always made me upset, If they only listened, if they only knew. After my diagnoses I felt like phoning all those OLD Bags and telling them they were wrong all this time! But I didn’t.. I just wanted to start treatment and be my old self again.
I was put on Salazopyrin immediately but it did not help and in March 2014 we started with Enbrel, to my horror I was allergic on my second shot and we applied for Simponi. I have been on Symponi for 7 months when I saw a second Rheamy due to me moving away (NOT BY CHOICE, WORK!) and no improvement, I have been worse off than before. I have pain pills prescribed and other anti-inflammatory but they don’t help me with Flare-ups. Keeps me going from day-today.
We have applied for Humira which seems like a lifetime to wait!! What is the most frustrating is trying to explain to family, friends and colleges. Being booked off sick and feeling so so guilty about it, when I can barely walk, when I can barely take a deep breath because my ribs hurt so badly, having chronic continuous non-stop Achilles tendinitis in both ankles and my Femur hurting so bad and burning non-stop. Left knee always swollen, back and neck pain, not to mention Fatigue.
We don’t ask for sympathy, we ask for understanding.
Education is so easily accessible that Google seems to be a Math Solving Mystemry problem because people are too ignorant to do research about A.S. Rather going oooohhh aaaahhhh, wow I’m sorry, never heard of it, hey take these supplements, just go to the gym, lose weight.. You are eating wrong cut out Gluten cut out red meat.. Like my medical bills aren’t enough they wanting me to get MORE PILLS!!! REALLY… The hardest part of this disease is you cannot see it most of the time, you don’t look sick .. You don’t look sick.. To be honest, this disease has made me a different person, who hasn’t changed because of A.S.
I do count myself lucky that my disease has not progressed like most people but I found out last week my hands are also affected making it difficult to drive.
Thank you Cookie for this page and reading every ones stories is something that has helped me a lot in weeks like this. We keep going and we refuse to give up.. My mom, Surita has been my rock and no matter what she has understood, she went with me to my appointments even driving me when I could not. She will never realize what it means to me because words can never explain what an Amazing Mother she is.
Thank you for giving me the chance to tell my story.
Bloubergstand, South Africa, Africa