Today I am on Cloud Nine! It was a great day for Gastroparesis. As many of you know, today I was meeting with my Congressman about H.R. 842. The meeting was a HUGE success and he is going to cosponsor the bill!!! There wasn’t even a question in his mind that it was what needed to be done.
In preparation for the meeting, I had created an advocacy binder which was extremely well received. The Congressman indicated that the binder was one of the best he has ever seen. He has been in office since the 90s, so I’m sure he has seen a few binders in his day. The complement on the binder meant almost as much as him cosponsoring the bill. I had poured A LOT of time, energy, & money into that binder and the last thing I wanted to have happen was to have it go straight into the trash after my visit.
This whole experience has been amazing and I am putting my thinking cap on as to the best way that I can help others advocate for Gastroparesis. I’m not quite sure if I can afford to print binders for everyone and am VERY OCD about presentation & packaging so I’m not sure about posting it all on-line. It is copyrighted to Adventures with Gastroparesis, so I want to make sure that the production quality remains top notch. Trust me, I WILL find a solution for how to get advocacy binders into the hands of GPers so that we can continue to make our voices heard.
Now it’s time to go celebrate with an acupuncture appointment to pop this bloated stomach of mine!
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!
Thank you to everyone for following this blog. If you wondered how you can help fight Gastroparesis, now you can!
There is a proposed bill in the United States House of Representatives which would increase the funding for research into dismotility disorders such as Gastroparesis. They only way that this bill will be passed is by all of us informing our congressmen/women that we need this bill passed.
You can do this either through the link below and/or by calling your local representative.
With the diagnosis of Gastroparesis, so much is taken out of our control. By sharing this bill and signing the attached, we have the ability to take control back!
If you have any questions, please let me know & I will be happy to help as much as I can.