Another loss

     I write on here knowing that God is going to heal me. Knowing that He is using me as a voice for motility disorder, gastroparesis, and Autoimmune Autonomic Neuropathy, and yet people are dying daily starving to death for a cure. An 18 year old was lost to this dreadful disease. It makes it hard to be excited knowing I am going to be healed when babies are dying.
     I try to hide how sick I am but that has not only not worked, I know my kids, my babies who I am supposed to protect and be a safe place for cry in secret for me. The latest thing I found out was my sweet Elijah went to spend the night with his brother and was feeling very bad but instead he acted like he was fine and when Noah walked out he would grab his stomach and say oh ow this really hurts, this hurts so bad, and when Noah would walk back in he would act illiterate he was fine. Unintentionally I taught him that.
     My doctor has told me that it is just a matter of time before they take away my central line and IV nutrition and try to put in a feeding tube. The world renowned expert on all things gastroparesis knows and has told many doctors that I am not a good candidate for a J/G tube. My oldest, Noah is a JR in college and is already being paid for research in Biomedical Engineer and I know he will do everything in his power to help. My daughter, Hope is going into Genetic Consoling. My children will fight for research, they will research and find a cure, but they need to be funded. Doctors and patients both need to be trained how to approach this horrid disease and given new forms of symptomatic relief and eventually a cure. Please pray that we can stop #starvingforacure and stop losing young innocent lives to this atrocious disease.