Today I am off work resting my body. My feet hurt, my hands hurt and I'm tired. So, I am going to use the first note I have ever written about having RA. I posted this on Facebook and I want to use it as my first blog entry here. I called it "I Wonder Why it Matters?"
I wonder why it matters to me that people understand what RA is? That it is not just your "grandmother's arthritis". That it is understood that it is a systemic autoimmune disease in which my body is destroying itself. I don't know how I got it.
Just because I smiled today and didn't complain and tell you how bad it hurts, doesn't mean I am not in tremendous pain. I just know no one wants to hear it all the time. It makes people uncomfortable to talk about it. And people want to cure it. If it was curable, I would not be using some of the most costly medications on the market today...which cause cancer and many other undesireable side effects. Medications that if I do not take, I will be in a wheelchair and no longer able to walk. Many times today under my breath, God and I have talked about how I was going to make it through the day.....or even take the next step.
Maybe it is just a basic human need to be understood. There are more and more days I feel like a failure. Because there are more and more days I can't keep my house the way I like it or have the energy to do many things after a full day of work. Or keep my grandchildren who are the light of my life! I want people to know I am not lazy. I also don't want to be defined by my disease. But,I don't know how to do that. It's always on my mind, because my body always hurts. And I am always tired. Not just tired but "fatigued". Tired beyond an explanation. Remember that my body is fighting itself and slowly destroying itself. That tends to wear one out. I am not depressed. I am tired.
I live by the "Spoon Theory". Written by Christine Miserandino, it is a wonderful explanation as to how one gets through a day with having a chronic systemic disease that saps strength and energy. I hope you will look it up and read it. I guess that is what I want most. For you to care enough to research what I am living with. Understand what medications I take and why I take them. Why the "snake oil" cures aren't cures and will harm me by not using conventional medications. I want you to know that the commercials you see on TV for RA meds are BS. Most people's lives are not lived normally even with the medications. But we all hope that it slows down the damage being done inside our bodies. I don't want sympathy or pity. I just want awareness and understanding.
Thanks for reading this! I am blessed with a wonderful family and truly good friends who I love very much and love me!
. I will be adding more to this blog as life happens. I have never tried this before. Maybe it will help me work through my feelings. Maybe it will be a waste of time. I hope not. I am not an eloquent writer. But, I want to keep a journal of my feelings and life happenings
