It has been 11 years since I was diagnosed with Lupus and as confused and concerned as I was then it doesn't compare to how I feel now living in this current state where a virus could be so scary and devastating for me. However, I do not live in fear, I am a warrior and I will fight until the end, whenever that is, but it is concerning that my life is dependent on others to do the right thing.
Hearing the life changing words of a diagnose is never something you can truly prepare for, as a matter of fact for a small moment in time I was actually happy to have it, a diagnose that is. You mean I am not crazy? The years spent in pain, extreme fatigue, hair loss and other "fantastic" things are from a real cause? That's great news... wait what, great news?!
The relief that this is actually something medically wrong only lasts a VERY short time as it turns into, what the heck is Lupus and what's the cure? What do you mean Dr. there is no cure? Ok, then what is the treatment to help manage my Lupus symptoms? What?! Shut the front door, there are not Lupus specific treatments? I have to take a cocktail of meds that are used for other diseases and hope that helps?
Fast forward to last year when I had enough of "managing my symptoms" by borrowing drugs from other diseases and signed up for a 3 year trial of a new experimental drug that if approved would actually be for Lupus patients on purpose!! Sign me up!! Ok, so now I am signed up and as I get my first infusion I think wait what am I putting into my veins, will I turn into Stitch?? Was I, am I scared, ok yes a little (shhh don't tell anyone that, it is not something a strong person like me is suppose to admit) but if I can help us Lupies get a better drug then I'll do it! It is not a cure but it is a step in the right direction.
My trial has now ended and while orginally looked promising for FDA approval I found out recently there are too many side effects to have it be approved. While it did help me it was still NOT A CURE which is the real issue but I will fight on until we get one or until I am no longer able to fight. TOO many people have died from Lupus and recently and this is not OK.
Please help support me as I raise money and awareness to find a cure for Lupus. It means the world to me to have such an amazing support system and please know ANY amount helps!!
Together, we can solve the cruel mystery of lupus. My deepest gratitude for your generosity!