If I asked you, do you think there is a disease which with its complications, is causing deaths in a community of approximately 10,000 or so up to one or two a week at times. Now, no it is not every week but there have been weeks when we have lost three of our GP family within 2 weeks. Considering there are 5 million suffering with Gastroparesis and many may very well be undiagnosed! There is truly no way to know the actual number. Are you asking yourself why? I pray you are!
Then if I ask you, do you think that the only option for a person who has taken years upon years to find an answer to why they are in pain when they eat, with nausea, vomiting, diarrhea, constipation, weakness, insomnia, often migraines, blood pressure, blood sugars, the side issues go on and on with severity ranging from person to person; should be to be told I am sorry we have nothing else to offer you. Or we cannot do this because, while we know you are in true need we cannot write RX to properly treat you because we will lose our license. Now thank God I have been blessed to have Dr’s who have gone to bat for me? But there are many who do not have doctors willing to fight for them and to fight the hoops of insurance at the same time. We are difficult and time consuming patients with an incurable disease which is causing us to often have severe pain when we eat (to live) and battle to expel our bile (again often a very painful process). We have an incurable disease which has not been given the research and time it deserves. Because until recently and unfortunately in some parts of the medical field itself, it is not given the degree of seriousness it deserves. Many of us, end up being teachers during ER visits or doctor appointments. This has gotten better. We desperately need motility specialists in each of our states and more than one per state! When you are living in a body that cannot properly digest the food in your stomach and on top of that cannot expel the bile out of your large intestine? Then as the years are going on this paralysis is extending itself to your small intestine! While I was able to remove the largest part of my paralyzed colon (large intestine- all but 5-7 inches) and it gave me sooooo much relief and quality of life from 2000 – 2003. I had another obstruction in 2003. Then another this year in the top of my small intestine. The surgeon had to remove a small piece of my small intestine it was twisted and I had too many adhesions too count. So, again I ask, is it okay to send off patients without an avenue to get answers? I have palliative care now (Thank God!) but it is not available to all my sisters and brothers. And again this is not research into the answers of cure! Not one person should be “okay” with 5+ million suffering from a torturous slowly starving with bile toxicity poisoning a body from a lack of ability to expel it correctly. And for those hinting or looking at multi-organ transplant many are left with our mitochondrial original faulty self! We need NO WE DEMAND…RESEARCH, TREATMENTS, AND YES, ULTIMATELY A CURE! WOULDN’T YOU? DON’T you?
Because when I say, or you say, or hear, “There but for the Grace of God go I?”
“Because whatever is done to the least of our brethren is done unto ourselves”
Please, Trust and Believe, this statement is so utterly true! We were all once you! Busy, productive people! Never ever dreaming something like this would tear into our hopes and dreams for what we thought our future would be! And while I am grateful to all the lessons I have been taught? And love my GP family dearly? My goal is to advocate myself into a new testimony! I do not know the future but I do know this is not a reality we should be accepting! I am past my expiration date and have beat the odds according to a couple of my doctors. I shall keep advocating with the prayer, the Lord only knows this answer and there are many of you who care enough to take up our fight as yours! I have had empathy for children with cancer at St Jude’s but I was never a child at St Jude’s with Cancer. I am praying like me you see this is like that situation! We need many answering our call with empathy! Ready to sign the petitions, share them, and request their Congressional representatives to Co-Sponsor HR 2311. HR2311
Our Proclamation Proclamation to Establish August as A National Awareness Month
Our Petition Petition to Establish Gastroparesis as a Disability