I was diagnosed with ankylosing spondylitis in 2000 when I was 20 years old. I’ll never forget the day when I was trying to get from one end of the University campus to the other to make it to my class on time and I suddenly couldn’t walk. I tried to take another step and thought “ok, I’ll just walk slower. I must have pulled something”. But all I could do was hobble so I knew something was wrong and I hobbled my way to the walk-in clinic. To make a long story short, I ended up seeing a rheumatologist and she found out that I have the HLA-B27 marker through my bloodwork. HLA stands for Human Leukocyte Antigen. When you have this antigen, there is a high probability that you have Ankylosing Spondylitis (AS) or some other Spondyloarthropathy. I was quickly diagnosed with Ankylosing Spondylitis and my whole world felt like it came crashing down on me. What was this Ankylosing Spondylitis and why did I have it at 20? A treatment plan was developed that worked for me for many years. I actually see having the antigen as a blessing. Ankylosing Spondylitis can go undiagnosed for years or can be mistaken for something as simple as back pain and unfortunately there’s nothing simple about AS. Knowing what was wrong meant that I could do things to stop it from progressing. I could have a plan. From physiotherapy to cortisone injections under ultrasound to regularly taking Celebrex, it was all of this combined that brought on my remission. This was a huge win for me and I’ll never forget how I felt hearing my rheumatologist tell me the news. Years later, my disease became active again and it was completely unmanageable and it is a struggle to this day. I’m currently on Methotrexate which I take weekly and on Remicade which I take through chemotherapy every 6 weeks. I also have a second autoimmune disease called Primary Sclerosing Cholangitis (PSC). There is no cure or medication for this disease.
I can sympathize with anyone that has an autoimmune disease. I understand how scary it can be to be diagnosed and hear that you have an autoimmune disease for the first time. As someone who has been diagnosed with AS for over 20 years and with PSC for 10 years, I have had a lot of experiences with the health system, with different drugs and therapies and I am hoping to bring more awareness to Spondyloarthropathies by sharing my personal experiences, methods I use to manage my symptoms and links to articles that are full of useful information.
Stay strong and breathe
If your compassion does not include yourself, it is incomplete.Jack Kornfield
You don’t have to control your thoughts, you just have to stop letting them control you.Don Millman