Friday, June 10, 2016

My tummy

No one has contacted me still, I just left another call and STILL waiting 4 DAYS. I gave up and tried formula because I have to have something besides pedialyte and my stomach hurts and is angry. And I only ran 20ml per hour while sleeping. Plus it was watered down with Pedialyte to help with the transition. Today I feel a little flu like achy, weak, tired, just flat worn out. Ghee I wonder why? But I'm up and showered and resting and waiting some more. Finally this evening, gi called and said to keep doing what I am doing which is living off my ivs and (250cals maximum daily) I also had to fight a war with my kidney doctor and neurologist...they put me in the middle (and I had to call and try changing my hydration scripts from my kidney doc to my neuro) they are working together. I told her they'd want to hear from her like a fax or something... The plan is to up my fluocortisone and try going to one liter Iv with my mag and now potassium too. since it's low always. But now I am just putting my foot down and saying no! (In the future) That's their job at the end of the day all it does is add stress to me and I get no where! so a million calls later home health pharmacy is sending me a messed up but doable order. (Kidney  Doctor wrote the wrong thing down to my neuro) ah! I'm tired. Going home I am seriously starving for a cure that's not just a saying we with Gastroparesis say. People literally are starving to death from this horrid disease. Here's the link to my awareness video Just have to have faith that somway things will all workout!-Chelle