The Lupus Walk is coming up this Sunday and like other events, I'm excited, nervous, overwhelmed and blah, blah, blah--you get the point. However, there have been minor issues that have been bothering me in regards to this walk. Now to clarify (because people can take things out of context), it's not the walk that is frustrating, it's trying to get those to join you in the walk that is. I have 1000+ friends on Facebook and I couldn't even get over 20 people to register to join me and walk for Lupus! How crazy is that! Yesterday I was hot as fish grease but I had to realize that people don't understand until it hits home and I RESPECK that. But I have shown people for years through statuses and pictures just how serious it is. It's so hard to get people to see the importance of something when it doesn't affect someone personally. I've seen people stand up and support causes like Breast Cancer, the March of Dimes and so many other more walks. It just hurts sometimes when people see one disease to be important over another. They are all so important. But it is fine. Even if they don't see it, I do because I remember when I was in the hospital and couldn't walk to the restroom and back. I couldn't even stand on my own. I could barely breathe, begging my mama not to let me die. So to walk this walk means a whole lot to me. I fought for this and I WILL do this either with or without them.
the giving part of the walk. Now I am all for the awareness of Lupus but I am not too into the funds part. I watch organizations raise thousands, if not millions, of dollars for "RESEARCH" and "STUDIES" and whatnot. But as a LUPUS SURVIVOR, that money has NOT in any shape, way or form helped ME. Call me selfish, call me what you want, but I battle this EVERYDAY. These organizations don't help pay for ANYTHING. I am in the process of getting on the transplant list.
People don't know but you have to relocate for a period of time for labs and whatnot for the different hospitals. You think those organizations are going to give me the money so I have somewhere to stay while I am doing the evaluations? NOPE. I decided that I was going to start a fundraiser on a site (NOT Gofundme) so that I can raise money to help pay for all the things I need. They don't pay for living expenses or travel! My insurance won't even cover those expenses! As a LupieGirl, I take prescriptions that they don't pay for, doctor appointments that they don't take me to nor do they provide just some kind of keepsake for having Lupus without having me to GIVE money to them. But THEY?...want ME?...to give my to THEM? I applied to 3 hospitals--Cleveland Clinic in Weston, Tampa Hospital in Tampa, and the Miami Transplant Institute at Jackson Memorial Hospital in Miami. I know I sound like I am snapping a little (excuse me), but it's aggravating as well. They give no money to help pay the bills I have now. I have heard of people with Lupus who are HOMELESS but they want me and all my friends and family to give my entire soul to their "RESEARCH" and "STUDIES"? I don't think so. I will create my OWN fundraiser to help and benefit me because I have had Lupus for almost SIX YEARS and I haven't had one Lupus organization help me pay a bill YET.
Did You Know?
An estimated 1.5 million Americans and 5 million people worldwide are living with lupus.