Friday, July 29, 2022

And the award for best actress goes to.....

O wait, this isn't an awards show? I was looking for my award of best actress in a lupus drama series for best portrayal of a healthy person for 25 years. Its a hard number to sink in, 25 years. I turned 40 this year which was also irony because I was never supposed to see it, but here we are. Everything changed on July 29th, 1998. But sometimes change isn't all bad. I mean almost dying of kidney failure and having your doctor tell you if he was a betting man and this were a horse race he wouldn't have picked you to survive. Gee thanks doc. But here I am. Can't kill bad grass I guess. No not really. 

I feel like there should be some kind of Prize or something when you make it 25 years with the thing that was supposed to kill you. I mean technically I should have been dead about five times already, but who's counting. Getting a disease like this is life-changing. There is a definitive before and after and things are never the same. I thought I wanted a military career and a house and family and kids and all that stuff that you are supposed to want. But things happen and life changes and all of a sudden you are living a new life. I guess there's something to be said about beating the odds. For me it's a little bit of tell me I can't do something and I'm going to prove you wrong and show you that I can. Even after all this time, it's still hard to wrap my brain around that I have had this disease for 25 years since I was 16 years old and I have lived most of my life like this, in pain than I have not in pain. Everyday is a fight. Every single day and don't let anybody else tell you otherwise. On your good days you feel on top of the world and like you can conquer it all. On your bad days you are frustrated and angry that this disease has decided to rare its head at the most inopportune moment. I've learned a lot over 25 years. I've learned that some people see past your disability, and others can't see past the tip of their nose. But you learn to ignore those people and prove them all wrong. I learned that when you feel your weakest is when your life is about to change into something better that you could have never even dreamed of. If someone would have told that 16-year-old kid who thought she was going to die that 25 years later she would be living the life she always dreamed of. Living in a beautiful house by the beach, a good solid job one that makes her insanely crazy half the time but a good job nonetheless, and a unicorn for a partner that loves me. Not a literal one although that would be cool. But being able to do life with someone you can't imagine it without and for the first time in a long time it makes you happy that you survived all those things that were supposed to kill you. Its Makes all the hell you went through worth it. It's been a stressful week for me of I'm being honest and of course my lupus has been raging for the past 3 days. Listening to my body and actually resting is the hardest thing in the world. Especially now since half my life is still in boxes and for the first time ever I'm living instead of just surviving. Its been a wild ride to be honest. I learned in life you have to play the cards you were delt, Good, bad or otherwise. If I've become good at anything in life it was roll with the punches. You'll need a few things to make it in life especially with lupus.  A back bone, a funny bone and am unshakable will and drive to survive. If you can master those 3 you can conquer the world. So thats my plan for this year. Live life more than I ever have and not let this thing called lupus take me down. Now let me got find a cupcake and blow out a damn candle and celebrate survival.