I have been chronically ill with this disease for going on three years and it has been the worst time of my life. I was told after the first surgery it would help. I then had the POP surgery done, again it was supposed to help. Still losing weight and can’t eat enough to get rid of the 7th feeding tube. I WANT MY LIFE BACK PLEASE!!!!
I have gastroparesis. It’s been a year since my diagnosis. It’s a hideously painful disease where you want to eat but know the aftermath will be too much to bare. Or sometimes you’re so nauseous you can’t even smell food. Food becomes your enemy but you need it to survive. I’ve lost very close family relationships, including my father who passed away without me being able to say goodbye. I am very lucky my boyfriend loves me so much. He’s also been taking care of my bills since I had to make the painful decision to apply for SSI and am awaiting approval, hopefully. I’m typing this while in bed balled up in indescribable pain. Please help!
As someone with gastroparesis I can tell you that this affects my daily life and everything in between. There needs to be some type of research or some type of cure better than what we have now. We need to spread awareness and have more doctors understand what we’re going through. I went from a typical 21-year-old to a 22-year-old who can’t hold down a job because I’m so sick. I will be just slightly or 100 pounds using a feeding tube and I’m told that there’s nothing else they can do to help me. Being a 22-year-old hearing that everything That they have done is it.
I was diagnosed after gastric abdominal surgery. Surgery was going to save my life; I am now on long-term disability. My former employer required that I apply for SSDI to continue with their benefits. Due to my medication sensitivities the only treatment options I have is a form of therapy to help me “learn that the pain will not hurt me”. I need IV hydration multiple times a week just to survive. Doctors have said if the therapy doesn’t work and allow me to learn to eat, I will need hospice soon. We need a cure. I’m fighting to survive; tests show motility issues in my entire GI tract and the best treatment option I have is psychiatric. It feels barbaric and totally dismissive. My life should matter.
I am advocating on behalf of my best friend, Niki Harris, she has gastroparesis. She suffers with this illness and other illnesses that are associated with Gastroperesis like orthostatic hypotension and autonomic neuropathy. She suffers from dehydration and low blood pressure daily. She has to take salt tablets and make sure she stays hydrated and a lot of times it’s still hard to manage. She cannot eat a lot of foods that someone without Gastroperesis could eat like spaghetti, chicken, hamburger, steak, etc. When she eats foods that she’s able, she gets bloated and has unbearable stomach pain that causes nausea and vomiting or diarrhea. If you look up Gastroperesis awareness, her and millions of others are starving and they need a cure. The care they receive is a lot of cases is horrifying. There are several times Niki went to the ER in horrible #10 pain scale and the nurses and doctors didn’t believe her. She and her mother would have to plead with them to believe her. We need this bill to move forward for my friend and for others fighting this invisible disease.