Have you ever been in a room surrounded with people just like you? In a way that they just get you. These people are actually strangers that you just met, but have come together for a common purpose. That you feel you can speak what’s on your mind without hesitation nor judgement. Thoughts that you’ve always kept to yourself but finally let the words leave your mouth because you knew they wouldn’t judge you for them. People on a journey similar to yours and completely understanding. These people you’ve only really known for barely 24 hours but shared stories that were filled with tears and made your heart hurt to be felt forever. Even share laughs that still make you smile in the future. That is exactly how I felt after The Lupus Foundation of America, Florida Chapter Ambassador Training.
I can tell you days leading up to it, I was super nervous. Nervous about flaring, asking myself questions like– are these people going to like me, will everyone be civil, are they going to be nice, what is this training really going to be about, and most of all AM I GOING TO MAKE IT THROUGH THE WHOLE THING?! The only thing I knew for sure, is that I was so excited to become an ambassador for the foundation because I care so much about it!
One of the main reasons is because when I first got diagnosed years ago, my mom and I found the local chapter. It was truly a blessing since day one. I can tell you when I was diagnosed I wasn’t looking for Lupus, not that I was technically looking for something in particular, I just knew something was wrong but didn’t know what it was. When I was told Lupus, I literally said “What the heck is Lupus? What do I have?”. I will never forget that day. However, because of the foundation, I was able to quickly realize I was not alone. I learned a lot, attended walks, created a bond with the people who worked for LFA. I grew such great respect for LFA and those I’ve met. I knew and still know that I have a great community behind me and fighting beside me.
The Florida chapter has been growing and seizing new opportunities for walks, spreading awareness, fundraise, give education, support , and more! With the addition of us, the ambassadors, we couldn’t be any happier! All of us want to help all lupus patients, their families, their friends, their caregivers, and loved ones.
We know this disease can be isolating and one of the biggest issues that most patients face is that, “they don’t look sick”. But they are. Some severely. These people are warriors who fight, who get up each day and stand up to Lupus! Lupus is a bully, it is scary! It can make you insecure in ways you didn’t even know existed and most of all chronically ill.
For me, it has changed my life. I can no longer do certain things. But I am learning to make a new life, an edited one, one that doesn’t require me to give up. I have hope. I am hopeful for all. I will continue to fight. I will help those around me continue their fight. Because I believe if we all come together our voice is that much stronger. They won’t be able to silence us!
My dream is that no one suffers the way many lupus patients do. I don’t want to see this disease take anyone’s life! Doctors to understand their lupus patients. That there is a great deal of mental health issues caused by this disease! I want more options for patients, ones that aren’t so dangerous for our bodies like chemotherapy. I want better outcomes, I don’t anyone to run out of options, and I want people to not only survive but thrive! With my fellow warriors– I am tired of counting my spoons. I am literally sick and tired of being sick and tired. We need a cure and we must stop lupus now!
I couldn’t be happier to be a part of a great group of people who share the same values and wants as I do. I know that their voices will be heard. I know they won’t back down. I know that when I am down they will lift me up. And if they are ever down, I will help pick them back up. We must join together more than ever. We will be heard, we will make a difference, and change will come! No one will walk alone in their battle! Because that is #AmbassadorsFirstClass.