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Took a long nap today. Didn't feel like eating all my lunch either. 4 days of up at 5am home at 9 took it out of me I guess. Going to play with my carbs a little this weekend and see if I can go lower without getting sick. Already dealing with sun issues. EPP is not fun. I was outside literally 5 minutes and developed a sore on my face. Otherwise, just itchy, burning skin from being out. Itching and burning is better than the lesions and weird blisters I get. I may have to get my gloves back out this summer and my hat. I did good last year, didn't need them much and had few lesions, the skin burning feeling was always there, but I'm used to that. My hands burn so much I burned my finger for real on the stove and didn't feel it! 1 inch long burn, didn't notice it til washing my hands. I try to desensitze to sun light as much as I can, doesn't help much. Some years are better than others, I have a feeling I'm in for it this year. And before anyone asks, no there is not a treatment or much research into EPP or any of the porphyrias, its a rare disorder with maybe 1000 of us diagnosed currently in the US. It can cause liver damage and in very rare cases liver failure, but generally just makes you miserable. If I sun burn things are 100 times worse than if a normal person gets a sunburn. Sunburns put me in the ER with severe abdominal pain a couple times, they thought I was having a gall bladder attack. I also had several episodes of skin swelling with redness that wasn't really a full sunburn. My doctor sent me to a dermatologist, who diagnosed me after some testing. But little is known or how to help, if I have questions I have to call a place in TExas that specializes because there is no one local to me. There is a list of drugs and such I can't take and some its just a guessing game if I can. A picture of my fun life. But I still go out and do things, I'm an outdoor person, just have to plan it in the evening or be careful.
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1186 kcal
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Fat: 56.40g | Prot: 69.03g | Carbs: 74.46g.
Breakfast: Post Marshmallow Fruity Pebbles, Milk (2% Lowfat with Added Vitamin A). Lunch: Hidden Valley The Original Ranch, Dole American Salad Blend, Great Value Shredded Mild Cheddar Cheese, Perdue Grilled Chicken Breast Strips. Dinner: Long John Silver's Fries - Platter Portion, Long John Silver's Battered Chicken Plank. Snacks/Other: Guerrero Chicharrones (Fried Pork Rinds). more...
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2096 kcal
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Exercise:
Driving - 3 hours, Resting - 13 hours, Sleeping - 8 hours. more...
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