ShrinkingMyTiara
Well-Known Member
I think this is true about not knowing what you were getting yourself into. Back then there was so much less information available and at 19 I know for a fact I wouldn't have been fully cognizant of all this surgery entails, even if I understood the technical details---and I was a pretty sharp, grounded 19 yr old.I appreciate all the help though and I just never learned any of this stuff I've always just gone through life with out paying to much attention. I forgot about blood tests for about ten years.. my doctor was really mad at first with me but he got over it. And Dr rabkin is cool he tries but while I was lucky to get this surgery at 19 I was not informed enough or maybe I wasn't smart enough at 19 to fully understand all that it would entail.. I just look forward to figuring this all out.
What matters most though is that you are educating yourself now as much as possible, talking to vets that can give you support, and being proactive in changing things around when you get better information than you had regarding things like the protein you are consuming or the calories you are taking in daily... There are some really great surgeons out there doing the DS but they are not great at the practical side of supporting their patients x years out who start developing issues when their DS collides with things life throws at them (like a car accident!). Educating yourself, tracking the things you do in a notebook and watching for patterns, and learning how to better nourish yourself and get your vitamins in will help a lot I think.
You are not the only DS patient that needs to eat high calorie to maintain well. I remember watching a video from a DS patient on YouTube who is years out but said she was eating over 3,000 calories a day to maintain her weight! So it happens...