A.S. Face 0202: Amanda
Hello, when i stumbled upon your blog it brought a lot of joy to me to know i am not the only one and that a lot of people have had the same struggles as myself, thank you so much for creating this blog to bring together people with A.S. I would love to be part of your goal.
My Name is Amanda, and i am from Listowel ON, Canada
I used to be a healthy active teenager that played rugby and field hockey. When I was 15 during some of my practices I would get unbelievable amounts of pain shot through my hips. I thought I was just from playing sports. After suffering for 6 months I went to my family doctor to let her know what was going on. They had told me it was just growing pains and I started wearing a brace and going to physio. After waiting 3 months to get into physio and going to physio nothing had changed so I went back to my doctor. She had noticed that I had bowed legs and sent me to an orthopedic surgeon. After waiting 8 months to see him and having a lot of hope in him, he told me i was crazy and to go get counseling. He said that I was just a teenager starving for attention and that the shape of my legs and the fact that i walked pigeon toed was not causing any pain. Discouraged I went back to my family doctor, and she was determined to find out what was wrong with me and sent me to a rheumatologist. She did a bunch of tests but still didn’t tell me anything and referred me to another rheumatologist, but i couldn’t see that doctor until I was no longer a pediatric. During this time I had to stop playing sports, was in huge amounts of pain, and thought no one understood what I was going through. The day after my 18th birthday I was finally given some hope and was diagnosed with A.S. By this point i had tried every anti-inflamitory on the market and had little hope. So i was prescribed Salfasalizine. I started taking this medication and within a month i became very sick and had a few episodes of paracarditis. I went off that medication right away but the heart problems have not stopped and had no way of controlling the pain. I am suppossed to start taking Humira, but we have had nothing but problems trying to get funding for it. I was working in a factory to try to save money for school, but i just couldn’t do it any more and recently had to quit and apply for dissablility. As a determined independent teenager I have not been taking very well to relying on people so much. I am still struggling with having a disease mentally and how much it is affecting me, and just not knowing what the future entails. A lot of people still don’t understand why things are so hard for me since i try so hard not to let it show, but the pain is starting to take over. Being only 18 and having so many hope and dreams it can be hard not to let the disease get in the way.
I do truly appreciate what you have done for everyone with this disease, it has brought me hope 🙂