Just a quick update I guess...

I'm very overwhelmed about a lot of things, especially since I will be moving in just over two weeks. This move is very needed at this point because I'm getting frustrated a lot with my current living situation. Living with my grandparents has been wonderful in many ways, but it's time for me to get out on my own and live. There are still some things I need to do to make sure my safety is not something that will be compromised. As I've said before, it will probably include something like Life Alert, or I am thinking something like adding an app to my phone where I can push one button to get help. When you have Mito or something similar that can be life threatening and change very quickly, you need to be able to get help and fast. Energy crashes are always in the back of my mind, mainly what I need to do to prevent them and also what I need to do if and when one occurs. That's par of what is really frustrating to me about living with Mito at such a young age. I always have to be really careful to not run myself down too much because if I do there's no telling whether or not I will have an energy crash. And believe me, energy crashes are anything but fun.

I have an appointment with Dr. P on Monday and I'm going to try to be very upfront about both my needs and what I am going to insist upon. I want to be referred to a Mitochondrial specialist and I likely won't accept anything else. As I've said before, Dr. P is a wonderful doctor and I am very glad he's my PCP, but I really need someone whose expertise is Mitochondrial disease. It's likely they could help Dr. P find some more effective treatments and therapies than what he has access to otherwise. I also think the UMDF would be incredibly helpful for him because they are the organization who is the most updated on the latest Mitochondrial research. They are also the people who support individuals with Mito and also make the most effort to raise money for both awareness of Mitochondrial disease and research. I'm anxious to get in touch with the UMDF and figure out what they are going to be able to help me with.