Day 19 part 2

Gastroparesis... I had never heard that word until 2009. The doctor that gave me the diagnosis had an ominous tone in his voice. He said he had 2 medications I could try but if they didn't work there was nothing else he could do for me. I left confused, unaware of the all too soon future to come. I was so glad to finally have a name for what my body was doing to me, but then I researched it and was overwhelmed with fear. I always loved food, cooking, eating, baking, all of it. I used to tell people I could never be anorexic because I liked food too much and I could never be bulimic because I couldn't bear the thought of wasting good food. In a way it has made me both because I don't eat for the fear of the strongest pain I have ever felt, and I gave birth with no pain meds. Then the hunger sets in. Before gastroparesis I don't remember feeling hunger. I would eat because it was time to eat or something smelled good or looked good or I was bored. Oh how I loved to eat. Now I know true hunger and I do my best to fight it because I know what putting a bite of food or a sip of water in my mouth will do to me, but hunger always eventually wins. Now I have IV nutrition to sustain me, to stop my body from stealing what it needs from my muscles, teeth, hair, and bones. Idiopathic Gastroparesis , it just means they don't know what caused it. Well, I am human and I wanted to know the cause, little did I know the cause was so much worse. Autonomic Autoimmune Neuropathy, something I was born with. It was the cause of my recurring appendicitis as a child. It was why my gallbladder quit working. It is why my stomach and small intestines are paralyzed. How could that be worse, you say? AAN attacks your body shutting down one organ after another. I am hopeful a neurologist can give me a treatment that if not fixing my gastroparesis will at least stop my body from shutting down any more organs. It is a very dangerous treatment and life support has to be on hand but it sure beats the alternative...multi-visceral transplant. Still hopeful but weary. The pain is making me want to say bad words and I am but no need to type them. Aside from me, my heart breaks for people dealing with this and being accused of having an eating disorder and even thrown in the psych ward. I even had a doctor accuse me of lying when all I wanted was IV fluids. The next day I ended up in the ER. I would love to show that doctor my central line and ask him if that is a lie. I know there are many things worse than gastroparesis and my heart goes out to those who deal with their own conditions. As if the stabbing pain in my stomach is not enough, I have a migraine coming on so until next time I hope this gives you a bit of insight into my world.
bu