I had the privilege today to share my story publicly for the first time. I must say it was quite exciting and scary all at the same time. You never know what people will think when you put yourself out there. In my case, I was greeted with love and compassion. My co-workers shared some of their lymphedema stories with me that really touched my heart.
This new journey of self-exposure has really opened my eyes to see the world from a totally different perspective. Once I looked at the world to be cold and uncaring to some degree but now I have more hope in mankind.
Since learning that I have lymphedema I spent many hours over the years researching the disease. I knew in my heart of hearts that somebody had a cure for this disease. I just could not accept that God will allow us to live here without a cure. However, year after year after year, I would search the internet looking for an answer. I could not find anything!
After feeling defeated yet another year I did stumble across a website that talked about advocacy for lymphedema patients medical supplies called Lymphedema Treatment Act. I was so amazed to discover that over 140 million people worldwide suffered from this disease. I actually got inspired because now I realized that I was not alone in this fight. I have support and people like me who are out here trying to make a difference by educating the world that this is a serious problem. I immediately joined the team and began helping to speak to Congress and the Senate about the impacts of lymphedema and how we do not have laws to protect us to obtain medical supplies that our doctors prescribe.
If you’re like me I’m sure you’re wondering why in the world did you have to get this horrible disease called “Lymphedema”.
I know I could not understand for the life of me why did I have to experience this condition that nobody had any answers to. I mean wow the one condition that doesn’t have a cure and I get it! Could they not have found a magic pill to fix me or a surgery that will make it go away. No! No! NO! Always the same answer NOOOO!!
So what do you do? Do you hide your feet from embarrassment? A doctor actually said that to me…not in the exact words but that’s how I took it. Or, do you realize this is your new reality and adjust your crown and keep living.
Well for me I stopped living for a while because I was just fed up with life and looking like this. I hated to shop especially for shoes which I used to love love love!!! I hated the summertime because more people could see that my feet were swollen so no more shorts for me nor swimming. I hated everything and I was absolutely miserable and no one knew it! I lived in the silo of my mind confined to the prison walls that I built around myself filled with the eyes of perception from others. Bottom line I was depressed!!