A.S. Face 0399: Lindsay Cairns
My story is much the same as those that came before me and those that will come after. Hopefully someday science will put a stop to all the pain. Our stories, your story, my story, his story, her story, are almost all the same. Weeks, months, years, decades of pain, stiffness and fatigue with too few answers and little help. Strangely when you finally put a name to it all… a sense of relief. Relief that it’s real, redemption that it wasn’t all in your head. But you’ve just been diagnosed with an incurable disease? You already knew, you just didn’t know what to call it. I’ve been lucky, with friends and family who love and support me, a doctor who does everything he knows how to help me find relief, any relief. A doctor I am also blessed to call friend. I can’t give up, I won’t give up, I keep moving, keep going, keep pushing, keep loving, keep fighting. I’ve already lost so much of who I was, at a time when you’re still trying to figure out who you are! I have faith that I am doing what I am supposed to and that life is unfolding the way it was meant to, whether I can see it now, or not. I’m ever so grateful for a wonderful international community of spondys supporting one another, holding out hope, standing tall together and holding out a hand in the dark. Life is so very short and precious, and this is the only one I have got, we’ve got. Some days I will lose the battle, but ultimately I hope to win this war. I’m determined to not allow AS to take me from those whom I love.
So here is my story:
Hi , i’m Linney. I am face 399 of the faces of Ankylosing Spondylitis project.
Before AS, I was an avid equestrian, a farm girl, a wife and a mother. I loved to play piano, and was self teaching myself guitar. I loved to be outdoors in all weather, walking, hiking, farming, playing.
I’ve been chronically in pain for… a long time. A pretty common theme for most patients with AS. However , AS and I were not properly introduced until after my 28th Birthday, until after our beautiful, no 5.5 year old daughter was born. It started slowly with low back pain, which over time has morphed into just plain back pain, top to bottom, stiffness, foot, heel and hand pain. Painful ribs, sternum and stiff jaw.
AS isn’t a very well known illness. So, at first I was just bounced around from this doctor to that and from therapist to therapist. A Chronic pain self management program and NSAID medications.
Remember that pain clinic I mentioned? Good, because it’s important. It just so happens that there I would stumble into the “game changer’ in my story. Not a magical cure, but a physician who is thoughtful, brave and smart. He is now my primary physician and a friend. Without him i’m honestly not sure where I would be. He is sure and true, but listens to me and values my opinion. He frequently lets me lead the way but is there to keep things moving forward when I falter. He believes in the importance of quality of life and luckily I believe that as well when it comes to living with chronic illness.
AS has been hard on my family. To his credit , my husband of nine years has stayed by my side. Often not sure what to say, often not sure what to do. But … still there, to try to help pick up the pieces and hold them together. We have a beautiful little girl who has never known a healthy Mama but is sweet and kind, thoughtful and patient. Together with the help and support of other family and friends we keep moving forward one day at a time, sometimes one step at a time.
AS however has given, it’s given me perspective to enjoy each day as it comes. It has caused/inspired me to start my own business making and designing my own line of cloth diapers. How many people can say their chronic illness made them a career? I try not to look too far ahead, ever. That can be pretty frightening and also unpredictable even for healthy people.
If I had any advice to offer to other patients starting their journey with AS or any chronic conditions it would be to be your own advocate. Gather information, and talk to everyone. You know your body best, don’t wait for the doctors to offer things up, ask for what you need and want and you’ll be miles a head.
Chronically in pain, but chronically awesome!
Courage is being scared to death, but saddling up anyway.
Nova Scotia, Canada