Tuesday, November 12, 2013
I can't handle this much longer. Everything is worse. My body is not working. I am mostly unable to digest food, with symptoms that seem to be from Gastroparesis. I have constant nausea. When I actually do eat, I quickly have the sensation of being full and still hungry at the same time.
Apparently, I was only eating 600-800 calories a day in October, while trying to identify food sensitivities. This was causing my daily migraines. So, with much effort, I am now up to 1100-1200 calories a day (soft foods and liquids). The migraines are actually improved. Apparently, my body doesn't like to be starved. My goal would be to get about 1600 calories a day, but just getting to 1200 is so hard with such intense nausea and fullness.
Everything else is quite horrible. I won't be having any follow-up for this last surgery. After 2 months of being given the run-around, I've learned that a Skype appointment is not an option for some stupid reason. And believe me, I'm not up for traveling by any means. I can barely take care of myself at home.
I still struggle to remain conscious most days.
I am so traumatized by doctors, hospitals, procedures, tests, and surgeries that I honestly refuse to see a gastroenterologist for these newer issues. I truly believe there is nothing that any doctor in the world can do to help me with any of my problems, and that I just need to manage this on my own.
My system is just so sensitive and easily overwhelmed by everything. A lot of this seems like mast cell symptoms. But that's something else I will just manage on my own. I don't have access to mast cell stabilizers, but I can sure self-medicate with antihistamines as needed.
I am just done. I'm done looking for elusive answers and treatments that end up making things worse. I just can't tolerate anything. Pain meds, migraine meds...they all cause mast cell reactions. My mast cell reactions are just getting stronger and stronger. A single whiff of fragrance can take me out. My sensitivity to high-histamine foods is just getting worse and worse. It feels very progressive to me.
I just have to survive as best I can, and hope that my body heals itself. There are no magical answers out there. There is no surgery that can help me. There is no test or procedure I'm willing to go through at this time. I am not up for any type of travel, so most of the expert doctors are out of reach. Perhaps one day, I'll go back to Dr. Francomano in Baltimore, since she clearly understands the GI motility issues and mast cell problems associated with EDS.
I am getting worse in many ways. I don't know how to handle it. But I'm done fighting it. I'm going back to bed now. Hoping for some type of escape. The suffering is just so intense. The constant migraine is fighting to come back...I have to figure out what the heck I can eat. I wish I could be done.