Our Bill HR2311 is one of the main reasons we even engaged in the #TakeABite4GP campaign. We have much to gain upon the passing of such an impactful writing which would change the course of history amongst our Gastroparesis (GP) Community. Many GPers cannot eat, they are on a liquids or soft foods only diet as is the writer of todays post. More often within our community we see a vast amount of GPers retreat to a clear liquids only diet or IV therapy with a constant need for anti nausea medications or remedies. We are NPO (nothing by mouth), we are TPN (total parenteral nutrition) / PPN (peripheral parenteral) dependent or receive nutrition from a tube placed either through the nose or stomach. Most people around the globe have never had to utter the words GP let alone go a day or a week and so forth without proper nutrition due to a paralyzed stomach and intestinal system. Often times, gastroparesis does not come alone. Most GP sufferers battle not only gastroparesis but a plethora of other chronic illnesses as well from POTS (postural orthostatic tachycardia syndrome), EDS (Ehlers-Danlos syndrome), CFS (chronic fatigue syndrome) and Seizures (epileptic to non specified) to CVS (cyclical vomiting syndrome), CIPO (chronic intestinal pseudo-obstruction), IBS, chronic pain and so much more. Unfortunately, many of us are plagued with mental health issues due to the overwhelming physical burden that living with a debilitating, chronic and incurable disease can do to a persons psyche. As you can see, we desperately need awareness, we need research facilities and training, we need hope, we need a CURE...we need YOU!
While so many of us may not be able to Take a Bite of food on a regular basis, this idea stemmed around the Take a breathe for CF campaign and the ALS Ice Bucket challenge. So many lives were impacted by the awareness each campaign brought to its cause. While people battling CF could not necessarily participate, nor could those with ALS in their own campaign, we felt as if Take A Bite 4 GP would have just as much impact for us due to the same reasons. We may not be able to Take A Bite but you or someone else can! We are still educating those not only within our own community but also encouraging them to help spread awareness for their own plight while creating a greater spectrum of awareness for those who had never even heard of the word "Gastroparesis" before that might be able to assist us outside of our community, even, in finding a co-sponsor for our Bill or donating to one of the fine organizations such as IFFGD or AGMD (linked below) in an effort to increase our hope for a cure. Now, here we are...#TakeABite4GP is spreading awareness for a cause that often times is misunderstood, overlooked and easily mistreated. Our patients need YOUR assistance. We need you to link up with us and either literally or figuratively, "Take a Bite for GP", take a photo or video, use the hashtag and post on behalf of our cause and increase our awareness and help us find our cure!
Won't you First, #TakeABite4GP and post to Facebook, Twitter, Instagram, tumblr, LinkedIn, Pin it, Google Plus+, Reddit, VK, Vine, why not post it to your classmates or whatever form of social media it is that you use to assist us in bringing awareness to our cause today and inevitably help us find a #cureforgp? Second: would you consider donating to one of the links below and assist us even further? Third: would you research our BillHR2311, sign it and send it on so it will make it out of committee and into the proper hands to becoming a reality for us and over 5 million Americans who suffer and honor those who have lost their fight to Gastroparesis and its accompanying ailments? Finally, we encourage you to read a few of our blogs, written by fellow patient advocates. Take a day in the life of a #spoonie as we are called. We hope that you will join us, laugh with us, live with us, love with us and advocate with us so that we may one day, in turn, #TAKEABITE with you...but hopefully not for GP!
Love and Light,
GP Patient and Advocate
Life Coach, Blogger
Our Bill HR2311
Fellow Bloggers and Patient Advocates:
Deb Shrader Trotter
Trisha High Bundy
Emily Randolph Sherer
Melissa Adams VanHouten