I've been avoiding this post. There are a million things rushing through my head but not a single word I want to say. When I started this blog, I couldn't wait for the day I would finally receive my diagnosis. I thought it would be so exciting. I would breathe a sigh of relief and share with you the problem, the solution and the 10-step plan to be good as new. We would all sort of celebrate and reflect on how crazy this year has been. I wasn't ready to talk about a chronic disease. I wasn't ready to say there is no cure. I can't accept that "treatment" only helps to slow the disease down.
There's a lot to wrap my head around. I'm still trying to process all of this and I know I'll be tossed between tears, anger, strength and hope in the days and weeks to come. For now, I'll share my heart and try to put this new reality into words.
I have ankylosing spondylitis. It is a chronic inflammatory disease that affects the spine and sacroiliac joints. Basically the joints and ligaments along the spine become inflamed, creating pain and stiffness. Eventually, the joints and bones fuse together. AS is a systemic disease that can also affect the eyes, heart and lungs. Nobody knows what causes AS and there is currently no cure. Treatment focuses on reducing pain, preventing deformities and slowing down the progression of the disesase.
Unfortunately, my xrays and MRIs show that I already have significant damage to my hips, pelvis and spine. I don't know exactly what that means yet except that it explains months of suffering. There will be more tests and discussions in the days to come. In the meantime, my treatment entails giving myself a shot once a week for the rest of my life, or until God or science comes up with something better. I made the mistake of googling the medication I'll be on. Main risk: cancer. Right now I don't exactly have a choice because we need to control the disease from moving so quickly. It's ironic how you have to chose between slowing one disease down and possibly injecting yourself with another.
So here I am - thinking about the present, wondering about the future and trying to settle into a new normal. I won't take this sitting down (or hunched over). I will tear this thing apart and learn everything there is to know about this disease. I'll fight for each and every day because the alternative is just unacceptable. There's a long road ahead. I have no illusions that it will be easy. All I know is that I am strong, God is still good, and this story has just begun.
Thank you to those who have walked beside me from the beginning and to those who have just joined along the way. We all have our own roads to journey, our own challenges and triumphs. I am thankful and humbled to walk with you.
With Much Love,