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Trapped_Ghost_Singin291 karma

Great questions! It really depends on the day of the week. I work a job as a administrative social worker about 18 hours a week. I work three 6 hour shifts a week. On a work day, I get up and get ready for work. I eat breakfast (or not depending on how nauseous I feel) and take my medications. I get dressed for work, pack up my feeding tube to go in case I get dehydrated while at work. I work from 8 to 2pm and usually get home around 2:30pm. Then I take a nap afterwards. After that, I take my afternoon meds. Then I usually watch tv or reddit until dinner at about 6:00 pm. I eat, then again maybe reddit or tv for another hour or so and I'm usually in bed by 8pm. There is a lot of running to the bathroom to throw up after meals here usually.

Today is one of my days off, and I mostly just spend the day sleeping, watching tv, reading or redditing. I try to recoop as much as I can on my off days.

I am doing okay today, my headache is under control, and the muscle pain isn't too bad. My stomach feels off and I might be slightly dehydrated but other than that I can't complain too much

Trapped_Ghost_Singin158 karma

I'm so sorry to hear about your mother. I can only imagine what it's like to watch someone you love die from such a terrible illness. My doctors are doing something similar with my biopsy cells. As for how I'm taking it, some days better than others. While I was in college I saw a therapist to deal with some of my issues. Sometimes, I'm angry at everyone around me for being healthy, and sometimes I feel depressed. But for the most part, I just try not to think about it too much. I am living my life on my terms until I cannot. Which is why I went to college and got a job even though my doctors told and still tel me its foolish.

Trapped_Ghost_Singin138 karma

It's not ignorant at all. Yes, I have had a lot of side effects from the vomiting. Several times I have aspirated stomach acid into my lungs, and it has caused bleeding in my lungs. When that happens I start coughing up blood and have to go to the hospital. I also have some enamel damage to my teeth. I use the pronamel tooth paste now to prevent further damage.

Trapped_Ghost_Singin136 karma

Well technically yes, I can have kids, but it would be a very difficult pregnancy for me for both the baby and me. If I were to have children they would likely be just as ill as me, or worse. So if I were to do that I would need to go for genetic counseling and probably would chose to not conceive naturally. But even if I were able to have a perfectly healthy kid I think I would find it tough to give a child the type of energy and attention they need and deserve. So for all of those reasons I am not going to have children.

Trapped_Ghost_Singin112 karma

That's an interesting question. Up until recently it was to graduate from college, which I have just achieved in May. Right now I guess my biggest goal is to try and make a difference in the lives of people I help at my job as a social worker. I would love to go and get my master's in social work so I can work as a medical social worker, but right now that's not really physically feasible.