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Joined 3 years ago
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Cake day: June 20th, 2023

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  • Umm… Wow that’s a complex question. In general people have been good to me and especially when they learn about what’s going on in my life. Like one time I put him on the bus to school, finished getting ready for work, arrived at work parking lot and got a phone call. He had a severe seizure for over 5 minutes so school called 911 and he was on way to hospital. I called my boss, gave 30 second explanation as driving out of parking lot and the only response when I got back to work 2 days later was “how is he doing? Good, he’s a quick recap of what happened”. That makes me positive on other people. His doctors and nurses are generally fantastic and understanding of any issues, not too surprising as mostly they are at a world class hospital for specialized medical needs( cook children’s hospital, horrible name but great facility). Actually 1 person treated us poorly, his 5th grade teacher. He had another seizure, we were asked if he had all his morning medicine, we answered honestly “no, we are out of depekot because the pharmacy is out of stock, they said they expect a delivery tomorrow”. The fucking teacher reported us to CPS for “medical neglict”. Case was dismissed after an interview but seriously fuck that teacher.

    Honestly, it just hurts me mentally. Like everyone is good and nice and accommodating. They understand that it’s difficult and requires time and effort to properly care for him. That said even with all that I can barely keep my head above water. The lack of sleep, the stress, the worry, it’s dragging me down. I feel like I should be able to handle everything, add on the support we get from services like Medicare and from other people this should be easy/manageable but I feel like I just can’t. That makes me feel like a failure. I know it’s a tough situation. I know most people would probably struggle too. But knowing a fact like that and how it makes you feel mentally are not the same.


  • Well his mother is also hear taking up some of the responsibility. He takes 11 medications per day, we’ll 11 doses only 6 different medications. He is 13 years old and today and still can’t use the bathroom unassisted(he can pull off his underwear and sit on toilet but can’t pull them back on). Thankfully basically all his medical needs are covered by medicaid otherwise no say we could afford it.

    Still alot of work and stress and it’s definitely effecting my health and my life. I wouldn’t be surprised if it eventually led to death indirectly(for example high stress causing heart issues).


  • He has lots of health problems. Non-verbal autistic, epilepsy, lactose intolerant, liver issues, developmentally slow, mostly deaf, vision issues, sleep disorders, poor fine motor skills, etc etc. It’s odd though, if he drinks regular milk it’s usually just diarrhea. If he eats something that was made with regular milk(like Mac and cheese or cream based cakes) he is more likely to vomit.

    I think most people cough cause they are expecting a regular mixed drink. Compared to what you get at a bar, my drinks are like 4-5x as strong.


  • I love cheese. My son is severely lactose intolerant but loves milk so I have to buy lactose free milk… Oh my god is that stuff expensive. That said regular milk and he will be either vomiting or explosive diarrhea from a single cup of regular milk, ask his grandmother how much fun that was the other week when she insisted “oh it will be fine”… It was not fine!

    Nope, I don’t get the pain -> pleasure thing. Nothing against it I just get the pleasure from it. Only sorta similar thing I appreciate is strong alcohol. Like I’ll do a rum and coke or vodka and juice both mixed like 50/50. Most other people try a sip and end up coughing while swearing lol.


  • I do a lot of pasta, a lot of sandwiches, I like some sour like saurkraut and pickles. I like onions and garlic. Most meat I eat is either chicken in some sauce(like alfrado or teriyaki or such) sausage with onions and peppers or in like a vodka sauce.

    Yes I grew up in an American house with Italian and German influences if you couldn’t tell.


  • Yeah I also occasionally just push my comfort. In a lot of cases it’s just not a flavor I enjoy. Same with fish, I can eat it but I just don’t like it.

    Irony is gf loves fish and spicy stuff. Like well have scrambled eggs in the morning with toast and bacon. Mine will have a small drop of ketchup for dipping. Hers will be coated in Sriracha and hot sauce.