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  https://m.youtube.com/watch?v=sM27ewIDtnI. Just have to have faith that somway things will all workout!-Chelle