I learned early on in this journey that doctors do not know all they should about this disease. As I started researching I could see where they were not treating me properly or ill-informed on certain aspects of the disease. It scared me to think these people I have put all my trust into knew less than me about AS. How could this be possible?
I decided I needed to be in charge of my health. I joined many support groups and talked to those going through the same thing. I read articles, old and new. I talked to my doctors instead of just listening to them. It was easy to find the good ones because the bad doctors just wanted to tell me what to do not listen. Some were even insulted that I wouldn’t just blindly do what they told me to. It was eye-opening.
Once I had a good team in place to handle my care I felt more confident in how my life would be with AS. I didn’t feel like a victim anymore. To continue that I started sharing what I was learning via my April Daily Dose’s. I’m open to listen to what everyone has to say and I still try to learn more about this as I go because I certainly do not know enough.
I’m amazed at some of the newly diagnosed folks who started off in charge and aware. I wish I had done the same but I’m happy I got there none the less.