I wish I knew what vitamin or mineral I wasn't getting enough of so I could try to eat more of it! I think I'm getting malnourished because other bizarre things have been happening as well: my fingers are separating from my fingernails, my skin is always dry and flaky. And it's been much more fragile than usual. Anywhere that something rubs against my skin I find cuts and scabs. It's been happening with my ring splints, my braces and even my bra! There are long cuts where my bra bands sits on my skin. But if I wear a looser bra then the weight of my chest makes my back hurt really badly.
I guess I should find a new GI doctor and gets some tests or who knows what else will happen. I'm at my limit.
There was a roboticist who said, "It takes a human body to think human thoughts." Is my body "human?" I think that that the decline in my health has really changed the way I think. So much of my energy, most of my energy just goes into trying to hold on one day at a time. There's so much pain...that there's hardly any room for other thoughts, let alone looking into the future and making future plans. Even though there's so much I need to do and more everyday.
Got into a modest argument with my dad when I asked him to come with me to my doctors appointment next week. I told him doctors were less likely to insult me when I had someone with me. Then he said, "why do you let them insult you? I'm not trying to "let" them do anything. I just need their help. It is hard to stand up for yourself when you need help so badly. Also, my parents are not interested in advocating for me or learning anything else about neck instability, tethered cord or EDS in general. If I were to get very ill right now and have to go into the hospital, I don't think that my parents could advise my doctors in any capacity regarding my health.
Therefore, it's up to me. Therefore, I have to try harder.