Day 224 Still alive and kicking

Despite their best efforts the local emergency room was not effective in killing me. I am glad to have the use of my central line back. It is much easier to keep my nausea under control with the use of my meds. What happened to me last week really wants me to fight for people in my position because doctors cannot help what they do not understand. If no one is able to speak up about rare diseases that most physicians overlook not because they are bad physicians but simply because they do not know. Some have a God complex but I believe most are just doing the best they can to treat all of their patients and when they are told by a mentor that these odd or rare conditions are simply the new drug seekers then they adopt the view without asking the hard questions because most people I know with gastroparesis avoid the ER like the plague due to this. If their condition is deteriorated to the point that they must go to the ER it is because they have exhausted every avenue available to them and they have no choice. By the time they get to this point the medication needed is suspect to the physician who has not seen them throw up so much and so hard that they have pulled muscles and they are on the floor crying because they are doubled over in pain that they can not get rid of on their own. I know this because I have been there so many times. I have to get myself together to make my daughter's sweet sixteen more than she could dream. I also have to get my self together so I can start my foundation and turn the world on its ear and help everyone understand the truth about rare diseases and what patients go through.