So I've been using Facebook as a place to talk about my Rheumatoid Arthritis, LPHS (Loin Pain Hematuria Syndrome) and my Chronic Kidney Disease , it affects my life daily and sometimes it is all I post about. Writing it out keeps me staying positive with the people around me in real life, namely my children and the children I babysit.
However, it gets old and depressing to see your friend write about their constant struggles. Yes there are some funny moments that would not happen were it not for these conditions. For example: Several months ago I was in the midst of a terrible RA flare, my hands were very stiff and weak. I had gone to the bathroom, shut the door and could not open it again. The door knob kind of sticks a bit. I was trapped in my own bathroom. I yelled for the only other person in the house who could open doors, as my 2 year old had not mastered the task at that time. My saviour was a 5 year old afternoon kindergarten kid who is with me in the mornings. After 15 minutes of me being trapped and yelling, he finally came looking for me. Then he showed me how to turn a door knob to open doors. "I can't believe you are so old and still didn't know how to open a door"
My husband changed the door knob that night, so I can pee in privacy and not fear being trapped for long periods of time.
I hope to use this as not only a place to update my status, but also to track my symptoms over time and share with others how I deal with the cards I was dealt. Chronic conditions never go away, they may settle down, or even go into remission, but they rarely just cease to exist. These are things that I must live with for the rest of my life, and my life may be cut short because of them. I don't want my kids to remember their mama as laying in bed, balled up in pain and crying. I want my kids to remember me as working through my adversities, not giving up. I want them to see and understand that life is not always fair, but being given a crappy diagnosis doesn't mean that your whole outlook and attitude has to be crappy. If you do your best to stay positive in your daily interactions with people and your duties, you naturally wind up believing positive. Sometimes to do that, I write down all the negative, and say "okay, today my kidneys are bleeding again and i'm in excruciating flank pain, and now my elbow joints are flaring up, which is new. So I'm going to bitch about it on the interwebs and get on with my day, because bitching and whining won't change a damn thing."
I'm not terribly consistent, my other blog kind of died out when Ian was born (or more to the point, when I joined Facebook) But I did have some funny posts over there www.hthdidigethere.blogspot.com .
Life is what you make of it. Make it good, and if you have a chronic condition, feel free to share your story with me and I will publish it on the blog. The more the merrier.