Now Playing: Day 828-The Final Road To Survival
"What most people don't understand is the flip-side of Gastroparesis. What goes on behind the scenes in the lives of patients."
Since starting the Gastroparesis Awareness Campaign over 7 years ago I have learned that accepting the truth can be the hardest part of living a Gastroparesis life. When I receive an email or letter regarding a loved one who has passed due to Gastroparesis complications it devastates me. No one should have to lose their life due to having an orphaned disease that lacks serious federal funding and research such as Gastroparesis. Patients should not have to suffer on a daily basis by the multitude of symptoms that occur with Gastroparesis. Patients should not have to suffer due to not having available medication made specifically for Gastroparesis.
Today I received another heart breaking email regarding someone losing a loved one due to Gastroparesis complications. This should never have to happen to anyone nor should supportive family have to sit back and watch their loved one suffer.
What most don't see is the other side of Gastroparesis. Most don't understand the severity of complications that can occur even without warning. They can also be life threatening. What most don't see is the multitude of patients who suffer from lack of support from family, friends and loved ones. This should never happen because we don't ask to be sick nor ask to be diagnosed with Gastroparesis. Why do patients have to sit back in silence suffering alone due to lack of support? This to me just doesn't make any sense. What most don't see is the amount of testing that every Gastroparesis patient must endure and face during the course of their condition. What most don't see is the financial burden and strain that is caused by Gastroparesis. What most don't see is the pain and suffering patients go through in order to keep food down and "possibly" being absorbed by paralyzed GI organs. What most don't understand is that Gastroparesis does progress over time. There are so many things on the other side of Gastroparesis that society fails to see because they fail to understand our unique condition. Over time most patients find themselves becoming a burden to not just family but also friends and loved ones. We lose our sense of being and our sense of hope. Thank God we have each other-Gastroparesis family made up of fellow Gastroparesis patients that consistently reach out and take the time to support one another.
No one should have to lose their life due to lack of research, answers and a cure. No one should have to scream for support and lose every aspect of their lives because of Gastroparesis. I hope those who read this blog and also suffer from Gastroparesis pass it on to family, friends and loved ones in hopes of providing further education on what lies on the flip-side of our condition. We shouldn't have to suffer in order to be heard.
It has been a day full of awakenings. I had two doctors appointments. Unfortunately there is nothing they can do to help control my seizures that are here to stay so the only thing I can do is take it one day at a time. I was also asked by one of my doctors today, "How are you doing since we out they can not do surgery?" My response, "I can't change the plate in front of me but when you have been battling and fighting the great fight for almost a decade you take the good with the bad." It hasn't been easy but God has a job for every one to do while here on Earth. I hope one day when I stand before him in Heaven I make him proud!
"If people have time and money to waste by getting elective cosmetic surgeries then they have the time to invest in Gastroparesis by raising Awareness and helping to save lives."
"I understand some procedures are necessary and God Bless those people but Vanity is a sin and when you reach the pearly gates and they don't recognize you, you will have some explaining to do !" -D