If I have one more person look at me and ask "Do you really hurt THAT much?" I might just scream and cry. I hate people who can't seem to get it. It hurts far more when its your own family. My grandparents are from the old school of young people can't hurt that much. I have told them and tried to explain what SLE is and how it affects the body but in their little world I don't really feel THAT bad. I have no clue what to do to make them understand that SLE is REAL and very devastating. When some random stranger doesn't get it, or a new friend, I can deal with that. They don't have to understand, they don't have to have compassion but my own grandparents. These aren't your typical grandparents either. I lived with them till I was 12years old. My parents lived there also, so it wasn't like they raised me but I lived in their house. Yesterday my sister, who is 16, came home with back pain. Not your typical aches and pain but true honest pain. I could see it all over her face. She wasn't going to say anything, she just wanted to get inside and lay down. Well she lives with my grandparents. My grandma caught her in the door and was trying to make her talk, when all she wanted to do was get inside and put down her heavy ass bag. She started crying and both my grandparents started in on her being 'dramatic'. I could see them thinking that she was 'faking' it. This rubbed me the wrong was. Seriously, she was not trying to put in anyone's face she hurt, she wasn't trying to get sympathy, she wanted to get to bed. This hurt me. I wanted to shake them and make them see what they where doing that girl. I was that girl. I am still the one thinks is being 'dramatic'. So I went and sat with my sister and tried to help her relax her back. Its worse when its your only family. But of course I have to play nice, because they are my grandparents and for the most part I do respect them, usually.
On other notes. I am now a Girl Scouts Leader. My girls wanted to join but they didn't have a troop at there school, so... I stepped up and said I would. I am excited about it but also very nervous that I will not be able to fulfill all my duties. I am also going to be part of a community theatre competition this weekend. I am an assistant director and light board operator. Theatre is my true passion and the one thing I miss the most when my lupus takes over. Right now I am having to take a painkiller to get out of bed. I hate when I flare like this but when choice do I have. I either give in to the pain or I deal. Even if dealing means that I cry for two hours when the pain overwhelms.
It all goes back to this is my life, and I have to live it. One way or another.