Wednesday, November 28, 2012


posting late! I was so tired yesterday, sorry.

I've had my PEG tube for about 10 days now. I think I like it better than my NG now that the pain is getting better. Overall it went pretty well, I didn't get sick from the anesthesia, and for the most part the doctors and nurses worked really hard to keep things quiet for my sensitivity issues. They even let me wear earplugs during the surgery to help me with noise in the hallways, when they were getting me ready, and so I would have them when I would wake up. Having a private room helped alot too, I just had to cover my ears or wear ear plugs when the alarms on my IV or feeding pump went off, or if a nurse or doctor came in and was making noise.
The big problem was I felt more pain than I should have, because of my sensitivity to touch. All the doctors and nurses agreed that I shouldn't have been feeling as much as I was. Some of them seemed to understand right away when I explained about my Dysautonomia, my sensitivities in general, and my sensitivity to touch. I tried going into detail, telling them that I'm usually so sensitive to touch that I can't wear jeans without something underneath them to protect me, and that in the past I have had big problems with the wind blowing on my skin, or the water in the shower making sick. To be honest with you guys, my sensitivity to touch is something I struggle with alot more than my family seems to understand. I have a hard time usually even touching the carpet on the floor, using a washcloth to wash myself, or sometimes even picking up everyday objects like a plastic bag, my feeding tube backpack, or a pair of socks. Some people really did not seem to get it at all though. It was like everything I said just went in one ear and out the other, and it was really frustrating.
Mostly right now I'm just extra exhausted on top of all my usual symptoms, especially since its even harder for me to fall asleep than usual. I normally sleep on my stomach or my side, but I won't be able to do that for a little while. I read that you can lay on your stomach with a G-tube once it heals and everything, and sleeping on my side shouldn't be a problem once it heals either. For right now though, I have to try to sleep on my back. It takes me hours to fall asleep when I'm laying on my back, I feel so uncomfortable, and like I don't know.. unprotected or something. Its like I have to protect my stomach and I can't relax if my stomach is all exposed when I'm laying on my back. On top of that is my usual insomnia, and I normally can't fall asleep till 3 to 5 or 6 in the morning. On rare occasions, because of my insomnia I might not fall asleep at all until the next afternoon. Usually my insomnia isn't such a big deal, I just have a crazy sleep schedule. Like I might fall asleep at 4:30 in the morning, and then wake up at 1 in the afternoon. Now even when I can fall asleep (between my insomnia and not being able to get comfortable) I just keep waking up every 15 or 20 minutes or so, because its so hard for me to sleep on my back. I feel so zombified most of the time.

Hannah's question - I mostly make things by hand, I don't really go Christmas shopping. For the most part I only have to worry about giving gifts to my immediate family (my parents and grandparents) so its not such a big deal. Aside from you I don't really have any friends that I exchange gifts with anymore.


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