Sigh.

I have attempted to begin writing blog posts a few times now. There just doesn't seem to be a way for me to gather my thoughts nor is there time for me to destress. Even this weekend, my 21st birthday, I had a difficult time. For the most part, my birthday was a great day. However, there were many difficult things going on. I am not really any better than I was.

My appointment with Dr. P is just four days away. I have many things I want to talk with him about. I just don't know how to explain all of them to him, and I also don't know what he is going to say. Dr. P will not say that I have ever had a seizure. Why is this? Because the EEG did not show any abnormal brain activity. But here's the thing: the neurologist even said that even though my EEG did not see epileptic brain activity does not necessarily mean that I have never had seizures. The nurses who have seen them have even said that they are seizures. I am fed up. I feel like Dr. P has kind of tossed me to they wayside. He just does not seem to accept the fact that he cannot cure me. I have Mitochondrial Disease (at least they are fairly certain that I do), and it is incurable!! Not to mention the fact that he left the Interstitial Cystitis undiagnosed and untreated for two, yes, two years. Two years that I suffered through severe pain (in addition to the pain I had prior to this) and wondered and wondered what in the world is wrong with me. I mean other than the whole Mito thing. Which is enough in and of itself. And there's the whole thing of being diagnosed with Mito, or referred to a Mito specialist. That is something I have wanted to do for a few years now. But it just seems like no matter how much I try to fight everything, to advocate for myself, just to try and get things figured out, something always stands in my way. And I'm just plain tired of it.

I know I need to get my Advance Directive drafted and signed. I know who I want to be my Health Care Agent, and I still have not had the courage to ask this person. This is the only person I can say that I would trust with my life, and trust enough to know when I am going to want to fight and when it's time to let go. These decisions and thoughts are very difficult for me, and I feel very helpless at times. I know in my heart that I can't count on most of my family, it's just a fact. I know that they would probably be there for me, but there are certain people (who for my own protection shall remain nameless...feel free to draw your own conclusions..), who will likely make my own illness and crises all about them. I'm not trying to be mean or callous, it's just the way it is.

I am having a difficult time. I'm not OK. I am having so many problems right now and I can't do this all on my own. I could barely speak tonight or put together sentences and words. And that really scares the shit out of me. I know, I'm not one to swear often, but I can't help it anymore. I need someone to catch me...