A different kind of Horror Story

Guess what... I am still here, I am still sick, and I spend everyday fighting for my life. I need your help to spread awareness and understanding of this horrid disease. On a video someone made, she made the point that over 5,000,000 people have gastroparesis and the chances are, you have never heard of it. obviously, if you follow my blog, you have heard of it. But I need your help spreading the word, because there are so many people that get misdiagnosed, sometimes put in a mental ward and made to think they are crazy, or doing this to themselves, and so many young impressionable people out there believe what their doctor tells them. When I was in a medical trial with Dr, Thomas Abell, my nurse told me so many horror stories about how doctors treat and meanly mistreat patients with this disease. I was happy to be a part of research and I hope what they learned from my body will make a big difference in the medical community. I went 10 years misdiagnosed and when I got the diagnosis I was told, we can try this medication, and if that doesn't work, we can try one other medication. If that doesn't work, there is nothing else I can do for you. You see, that doctor knew first hand what this disease does and he wanted nothing to do with it. It didn't take long before I had my own horror stories to tell. I needed IV fluids and my local doctor had no hospital privileges, I went to a doctor in search of only IV fluids and after sitting in his office for hours, apparently losing 6 pounds in 2 weeks and the fact that my bloodwork did not show enough abnormality, because that is a crazy part of this illness, you bloodwork looks fine unless you know what to look for, atleast until you are at death's door. He said that I looked dry but that I was not telling him something, a nice way of saying I was lying, lying to get IV fluids of all things. He sent me home, the next day I lost another 4 pounds and ended up in the hospital. I explained the ZAP method Dr. Abell which was nothing by mouth to let your stomach rest and IV fluids, Zofran, and Phenergan. After a week in the hospital, I still could not hold down a sip of water, but since the ZAP method was not working they unhooked my IV and sent me home. It wasn't long I ended up back in the hospital. they finally checked my prealbumin and said it was a little low at 14 and put a PICC line in and started IV nutrition. Right now my prealbumin is low at 18 which tells me 14 wasn't just a little low. Before I left the hospital they put in a tunnel cath, basically a central line that tunnels under my ribs and opens 3 centimeters from my heart and i have been on IV nutrition ever since. At one point, I went to the ER because there was a hole in my central line which would inevitably land me in ICU with sepsis. The doctors did not know what to do and after several hours and many times of asking for help they said they were waiting on my results, only they had not run any bloodwork or tests. The nurse tried to get some blood and blew my vein and when she tried a second time the PA said not to worry about it and they all went in a room and had a conversation about me. They came out, labeled me as a drug seeker and told me not to bother going downtown or to any other hospital. That doctor i never saw should have been fired, but instead, stuck me with the entire bill making sure insurance would pay nothing. I finally put a call in to my surgeon, who placed the line and when they got the repair kit in they used the downtown ER to repair it. The nurse that was at the ER the first time, was at the downtown ER and she came in and apologized to me for how they treated me. i could go on and on with similar stories but that is not the reason I am writing this today, I am writing this so everyone who reads this can share it all over the world, to protect the young boys and girls and everyone faced with this journey, especially if they don't even know what they have yet. If you are throwing up and don't understand why, if you have sever stomach pain, severe bloating; I can go from a fairly flat stomach to looking like i am 8 months pregnant within a 5 minute period; if you have been told you have an eating disorder and didn't believe it at first, look up all the symptoms for gastroparesis and insist that your doctor does a gastric emptying test because it is the only way to be sure. know that your gastric emptying tests can vary because in most people it is a cyclic problem, meaning it comes and goes with no reason or rhyme. I started out like that and now my stomach and small intestines are completely paralyzed. Please share this, please help people see their condition for what it is!