This weekend has been beautiful outside but I have been happily sitting at my laptop preparing a binder about Gastroparesis for my meeting with my Congressman tomorrow. All in all, I am quite pleased with how the binder has turned out. It includes a lot of great information about Gastroparesis from a variety of sources.
I am now working on my talking points and the order I want to present them in. Practicing some of the statements has made me quite emotional. It is so hard to not have your voice quiver when talking about how people are quite literally starving to death due to a lack of a cure and treatment options.
It’s difficult to talk about finding your Plan B in life and continuing to pay the bills. Talking about how your life has been quite literally turned upside down and all of your priorities have changed. Things that once seemed so important now seem so trivial. Discussing how this shift has cost you your relationship with what were once dear friends and even your own family. Describing what it is like to have people disappear from your life because they don’t know what to do with you.
It’s also emotional talking about all of the new people that have been met due to Gastroparesis. People that are some of the strongest people I know. People that have overcome some that most amazing obstacles. There are also the caregivers who never complain and keep trying to help us in the best ways that they can.
Gastroparesis brings together people from all backgrounds into one unified voice. A voice that needs to be heard & I’m more than thrilled to be speaking to my Congressman tomorrow on behalf of all of us.
Now it’s time for me to get back to it so that I can represent tomorrow!