Buckle your seatbelts kids. It's gonna be a rant post where you just kind of hang on for dear life while I get all of this out of my system. Here lately it seems like every time I am on social media I see posts that another lupus warrior has died. Every time I see one of those posts I have so many emotions that flood through me. Sadness that we have lost another great one, anger that we don't have a cure yet for this fucking disease that shows no mercy and wrecks havoc on us on a daily basis, and it also makes me wish that I had known them. Unfortunately death and our own mortality are a big thing for us. I'd be lying if I said I hadn't thought about my own. It's a little bit of fear and a little bit of curiosity as to how I would die. But as curious as I am I won't fill out an advanced directive. The funny part was when I was 16 and newly diagnosed I would argue with the nurses monthly before my chemo treatments to let me fill out one. Now here we are at 37 and I can't bring myself to fill out a piece of paper that Expresses my wishes. I guess for me because filling out that paper makes it real. Point blank I don't want to think about it. I'd love to think I'm just like a vampire in the sense that I am immortal and I'm going to live forever. However I am a mere mortal we know that is not going to happen. So we are faced with the inevitable task of facing death. This disease makes me so angry sometimes on The Daily. It's bullshit that people are dropping like flies and that we have so few treatments in all of this time. Now granted there is a lot of research being done and there are a lot of drugs that are in trials that will hopefully work. But right now it's still bullshit that people are dying from lupus. I'm so proud of all the lupus warriors that are in D.C. right now. I really wish I was there with all of them too. Something's gotta change. We need better treatments, and more funding. And I know personally I'm not going to stop until I have shoved the word lupus down every person I meets throat. To me every new person I meet is one more person I can educate on Lupus. Believe me tonight if I wasn't taken down with a bad case of fatigue I would be rocking some purple boxing gloves and beating the crap out of a bag just like Rocky till I was satisfied I kicked some lupus ass. But instead I blog. And I feel what I feel and I keep swimming. And as we lose another butterfly to this horrible disease it fuels my fire even more to just keep pushing forward for me and for everyone else with this disease and never stop until we have a cure. As always just keep swimming lovlies.
