J
I have a medical condition which is very complicated to handle, highly under-researched, and wears a few masks. I have maintained my diet relatively well since the first of the year, though I admit I've been a bit more lax about it these past few weeks. However, I have not completely fallen off the wagon. The first step was simply eliminating all sources of high protein: meat, dairy, soy, nuts, *legumes, wheat, and flour. The next step is to start counting my protein intake. This leaves me anxiety ridden because I feel like it takes over my whole life. I have a couple apps on my phone, but they are not user-friendly. I also have a binder, but it's locked away in storage, and if I had it I'd be forced to carry it with me wherever I go. I do not like being controlled by food. The next step after counting my calories, fiber, protein, and iron daily, is to start limiting it. I have a history of eating disorders, so this makes it more complicated. My bf doesn't fully understand this disease and is always concerned that I'm not eating enough. But when I tighten things up, I really will look like I'm not eating enough... Chances are there will probably be days when I don't eat enough, but such is the nature of this disease. There is a very precise number of calories I must ingest in order to control my levels. Too much means I probably ate too much protein, or else it's just too much because I lack energy to burn off too much. Too little means my body goes catabolic and I end up with high levels that way. Too low iron or fiber, which is nearly a given considering how limited my diet is, leaves me with loads of problems. And I can't take fortified foods because they are higher in protein.
In addition to the diet, I have to start taking regular blood tests again. The tests themselves are simple. I can do them myself. The issue is that I need the regular feedback in order to regulate my diet and it takes up to a month or more sometimes to get my results. I also have other medical issues that need to be addressed, but I have little time and energy left over after dealing with this disease.
Last Sunday I was speaking with a dear woman I call Granny Frannie. It was nice to be validated. So many times peoples response is "Oh wow. You must be really healthy." Uhm... no! "So you can't have sugar. Well that's good for you." Wrong, I can eat sugar till the cows comes home. "That doesn't sound so bad. You should be greatful you have to eat so well." Tell me that next time you're coming home from work exhausted and you decide you're just going to grab a burger, or order a pizza. Tell me that when you want to go out on a date but you can't eat anything on the menu but a dinner salad. Granny Frannie's daughter is a dietician, and Fran mentioned PKU to her. Her response, "Wow, mom. That's the worst possible diet to be on. It's nearly impossible to control." Finally someone gets it.
I do not intend to throw a pity party, but this disease is horrible. I was speaking to my bf and he mentioned that his father's all liquid diet was worse. I do understand that the consequences of it may be minor compared to losing half your body weight, or being hungry for a year, but at least those diets are clear, cut and dry. At least when you don't follow that diet, you know what will happen. Blah... Blah... Blah... I'm done now.
Help Jesus! Maybe I'll try locusts and honey. Oh wait locusts have too much protein.
In addition to the diet, I have to start taking regular blood tests again. The tests themselves are simple. I can do them myself. The issue is that I need the regular feedback in order to regulate my diet and it takes up to a month or more sometimes to get my results. I also have other medical issues that need to be addressed, but I have little time and energy left over after dealing with this disease.
Last Sunday I was speaking with a dear woman I call Granny Frannie. It was nice to be validated. So many times peoples response is "Oh wow. You must be really healthy." Uhm... no! "So you can't have sugar. Well that's good for you." Wrong, I can eat sugar till the cows comes home. "That doesn't sound so bad. You should be greatful you have to eat so well." Tell me that next time you're coming home from work exhausted and you decide you're just going to grab a burger, or order a pizza. Tell me that when you want to go out on a date but you can't eat anything on the menu but a dinner salad. Granny Frannie's daughter is a dietician, and Fran mentioned PKU to her. Her response, "Wow, mom. That's the worst possible diet to be on. It's nearly impossible to control." Finally someone gets it.
I do not intend to throw a pity party, but this disease is horrible. I was speaking to my bf and he mentioned that his father's all liquid diet was worse. I do understand that the consequences of it may be minor compared to losing half your body weight, or being hungry for a year, but at least those diets are clear, cut and dry. At least when you don't follow that diet, you know what will happen. Blah... Blah... Blah... I'm done now.
Help Jesus! Maybe I'll try locusts and honey. Oh wait locusts have too much protein.
