April is Ankylosing Spondylitis Awareness month--wow! mouthful! Here we are halfway through April and I've really done nothing. Why? Because I have AS! Simple for me to understand and for those that have the disease. Not so simple for those that don't.
I would never wish this terrible disease on anyone, but everyday I think "I wish you could understand". I guess it's not possible for anyone to truly understand unless you're going through it--hence the difference between empathy and sympathy.
Tomorrow I go for "round 3" of my Remicade infusion--am I excited? um actually, I wish it were now! I've not had any relief so far and I'm hoping the "3rd time is the charm". I'm also hoping for no complications when I whip out a new insurance card-yes, TOTALLY NEW INSURANCE! This literally is a nightmare for someone with my type illness.
So for now, I live with AS. Here's my AS awareness---What I'd like for YOU to know--
Every morning, I wake in pain. Not a little pain but excruciating pain. Sometimes I can take a step and literally feel my body buckle. Usually after several hours of moving I'm able to get going. This doesn't mean the pain is gone..it means I can now manage. And please, PLEASE, don't tell me that I need to exercise. I mean really people, you have NO IDEA. I don't want to hear about your doctors and how you have supplements or diets that will "cure" me. There is NO CURE (well, if God wants to heal me he can and will, but I'm not mad at him if it's not his plan). Every Monday I'm nauseous and if I talk about the medicine or smell alcohol, I get nauseous immediately (yes, I'm queezy right now). I worry about my family. Will I be able to be the wife my husband deserves and the mom I truly want to be to my girls. Will I be able to play with my grandchildren one day??? What will I look like in 10 years, 20 years? Is my medicine going to ever start working? Right now, I'm screaming inside!!!!!!!!!!!!!!!!! This sux! AS sux! I'm too young for my body to be behaving this way. I (we) had plans. I want to run and play. I want my life back. So, for those of you that don't understand, don't try and patronize me. Don't try and tell me what will work, because at this point not even the doctors truly know. Just please for us with AS try to atleast see that we may look fine on the outside but on the inside we are screaming!