BENEFITING: LUPUS RESEARCH ALLIANCE
ORGANIZER: LUPUS RESEARCH ALLIANCE
EVENT DATE: Mar 19, 2017
If you’re reading this you probably already know that I was diagnosed with Lupus at 15 and it is a disease that my sisters and I all suffer from daily (if you didn’t know this already I’m concerned with your choice of light reading but please do continue). Many of you have seen the rashes I get, the way that my hands and feet turn black from lack of circulation, and how sick I get when I am in the sun even for just a few minutes. But most of my condition is invisible. You don’t see the constant pain I am in daily from swollen joints, you don’t know that on any given day it takes me 45 minutes just to get up the courage to get out of bed because of how badly my body hurts. That's on days that I am able to get up, other days I just lay there and cry because the pain is too bad to even move. You can’t see the constant fevers that wrack my body making it impossible to sleep some nights or the lack of energy that I constantly have to combat just to get on with my daily life. You don’t know how it feels to have your own body attack itself, to have organs shut down, your hair all fall out, or to feel like you’re not normal because at 24 you feel like you’re already 90 (minus the adult diapers, at least I still got that going for me!) You don’t know the constant worrying about whether or not you will get worse or if your organs will hold out or if you'll be using a cane by 40. You’ve never had to make the decision to take medicine or not, medicine that may stop some of the pain but that will kill off your immune system making you feel worse at times and catch every little cold.
I try my hardest to live normally and to hide my pain and sickness and to always stay positive, but the reality is that there is no cure for this disease and I have no control over whether it will get worse or not. That's why I am doing this run and raising this money, because Lupus research is making so many great strides toward finding an effective treatment and possibly even a cure one day and funding shouldn’t stand in the way of this. Thank you in advance for donating or even just for taking the time to read this because it’s important for people to know that invisible diseases exist and to raise awareness for them. If you want to know more about what it’s like to live with Lupus read this short article, it’s my favorite and so adequately sums up life with Lupus. https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/