Because of all of my problems with nausea and consequently, getting enough nutrition, I just see eating as a necessary burden to survive, rather than a source of enjoyment. Right now, I am able to get on average 1000 calories a day, and the TPN and lipids supplement what I’ve estimated to be about 1,800 calories at night.
As for my safe foods, right now my diet consists of: Lundberg Family Farms Organic Brown Rice Cakes (Organic Whole Grain Brown Rice, Sea Salt): 3 cakes per serving Pressed Juicery Greens 2 (Apple Juice, Cucumber Juice, Celery Juice, Romaine Lettuce Juice, Lemon Juice, Spinach Juice, Kale Juice, Parsley Leaf Juice): ½ bottle per serving Trader Joe’s Corn Tortillas (Stone Ground Corn, Water, Traces of Lime): 2 tortillas per serving Organic Honeycrisp Apples from Trader Joe’s or Whole Foods: one medium to large apple per serving Organic Grilled Chicken Breast (Organic Chicken Breast from Whole Foods or Lazy Acres butcher, Trader Joe’s Olive Oil Spray, Salt, Pepper): ½ or 1 thinly sliced Chicken Breast Arugula “Salad” (Organic Arugula from Trader Joe’s or Whole Foods, Trader Joe’s Olive Oil Spray, Organic Lemon Juice, Salt) Organic Flank Steak (Flank Steak from Whole Foods or Lazy Acres butcher, Trader Joe’s Olive Oil Spray, Salt, Pepper) I try to eat as organically as possible and prepare everything myself, that way I know exactly what goes into my body. Since food releases histamine the longer it is stored (unless you freeze it), I try to make everything fresh right before I’ll eat it. Also, I try to force myself to try new foods even when I don’t feel good, so that way I have more safe foods and rely less on foods without a lot of nutritional benefit. My goals for this week are to try celery juice, which I heard can help with POTS; try bananas, so that way I could freeze them and add protein powder to make a banana ice cream; and to try another “salad”, to alternate with the arugula salad. Having the TPN going in at night alleviates a lot of the pressure that comes with wondering what and how much I’m going to eat everyday. The purpose of the TPN isn’t just to help me gain weight, but also to be able to add in enough new foods so that way I can go on a rotating diet. My one dream food-wise would be to have peanut butter again, but that isn’t realistic because that is one of the foods that I have the worst reaction to. My Pediatric GI doctor has jokingly told me that she would personally come over to my house and kill me herself if I ever tried it again. In simple terms, if I didn’t need to eat, I would actually feel pretty good (other than the symptoms that come with low blood sugar), because food is the main source of my nausea. As soon as I get the MCAS under control, I should be able to eat a larger variety of foods without feeling worse, and be able to enjoy food again.
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Ivy/POTS//EDS//MCAS//SIBO/
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December 2018
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