Don’t let it defeat you
I won’t sugar coat anything, when I write it’s raw and it’s real knowledge from my life. That being said, some days just flat out SUCK! I most definitely get knocked on my butt my share of days. I however have a choice and so do you. You can choose to get defeated or you can get up and Kick Some AS! Yesterday was one of the hardest days I have had in a very long time. So I stopped what I was doing and I rested for a bit, put a pain patch on and then went to work living my life. My life is far from what some call normal, but I live it the best way I can because I refused to be beaten by this.
Make your HLA-B27 Be positive
What does that even mean, make your HLA-B27 Be positive? Let me first clarify that to those who don’t know, HLA-B27 is the gene connected to AS (Ankylosing Spondylitis) and you absolutely do not have to have the gene to have AS, and you can have the gene and not have AS. I am HLA-B27 positive meaning I do have the gene and of course I have AS as well. When I was struggling with my day yesterday that phrase make my HLA-B27 be positive came across my mind. The term positive is supposed to be a good thing, I think we can all agree that being diagnosed with a chronic pain, disabling, life long disease that can’t be cured is the farthest from a positive thing. That’s when I realized that I have the power to make it a positive thing and I have done just that.
Kick Some AS
Kick Some AS is much more than a hashtag, or just a term I toss around lightly. In the past 2 years of being diagnosed I have seen many ups and downs. One day not long after diagnosis I was out hiking this massive beast of a trail up in New York. I kept saying to my self “man this trail is kicking my ass” but I didn’t give up, and I didn’t let the fear of unknown, or the fact that I was alone defeat me, I was going to accomplish this goal. Once I made it to the top, it was all down hill from there and that’s the easy part, so I felt better than I had ever felt. I was bruised, bleeding from a few minor scrapes, sweating horribly, hungry and tired, but I made it! That’s when I realized that if I can do that, I can beat this thing too. Kick Some AS became my motto and began my undying passion to bring others support and comfort when they might be struggling.
When I first heard the phrase Ankylosing Spondylitis from my Doctors, I said just that Anky what? Then when I began telling family or friends they said the exact same thing. My children when I came home the day I was diagnosed and told them what I had, they immediately said “Mom has a prehistoric disease, she has ankylasaraus spindlefiber.” From that day forward that’s what they have called it, my dinosaurs disease. I was clueless and began a relentless research of AS. I discover a non profit organization and began the work of becoming a voice for the AS community. I’m my State there was not a support group, so I completed an application to become the leader of the Spondylitis Association of America’s first leader of a support group for the state of TN. Having my dinosaur disease has turned into something hugely positive. I have been able to spread so much awareness, learn from others and from myself. I am a better, stronger person because of this, and that is why I can say my HLA-B27 is Positive. That is why now when I encounter people, that don’t look at me confused and say “you have Anky what?”
Self help is the first step
I only needed a year to figure this one out, well I suppose you could say 19, because I refused to do anything to accommodate the way I felt prior to diagnosis. Mostly because people kept saying I was just crazy or depressed. I’m no longer ashamed of when I need a little help. I am super independent, so allowing anyone else to help me in anyway has been very hard. I understand more than ever that I must take care of myself first. I make myself rest when needed, I ask for help and I adjust my lifestyle to fit my pain level day by day. This allows me to participate actively in my kids, families and friends lives. I can work, maintain a relationship and have the energy to keep on going to build Kick Some AS into something wonderful. I’m not afraid to tell my Doctors what I need or how I feel. If I didn’t do this, everything in my world would come crashing down. I am the only parent my children have, so I don’t have a choice, and I refuse to let my kids think this is something that will prevent them from achieving their dreams and goals if they are ever diagnosed with it. I’m a spoon yielding warrior in battle and my blue ribbon hangs proudly as a badge of honor because I get to help others help their self.
Now get out there and Kick Some AS