An update

I decided I would write an update since most of what I said last night wasn't anything near positive. To say that I have lots of positive things to say would be a complete lie, but I am slightly more optimistic tonight than I was last night. Slightly meaning of course, not much more just a little tiny bit. I'm tired of sugarcoating everything and I'm tired of pretending that everything is OK when nothing is OK. I know that to an extent I need to accept the fact that I have this illness and let it run however it chooses. Essentially I need to surrender to it, because there is nothing I can do to control it at the moment. And if it is Mitochondrial Disease, there will likely be nothing I can do for quite a while. It's uncertain whether or not a cure will actually come in my lifetime. I can't worry about these things, of course. But these thoughts do come to my mind from time to time. I'd be lying if I said they didn't.

I keep hoping and praying that my doctors will finally figure out what's going on with me. I am a step closer to some answers, at least I think I am. Today I had an appointment with Dr. P and he decided and EEG (Electroencephalogram) was needed. Actually to tell you the truth I'm pretty happy he wants to do one, considering I've been thinking one has needed to be done for quite a while now. Especially since the episode on July 5. I figured out there was only a month and five days between episodes this last time. To be truthful, for me to live a semi-normal life, the time between episodes need to be much longer than that. But, as I have said before, I need to look less at having a "normal" life by other people's standards. What I need to focus on is accepting the "new normal" that Mitochondrial Disease is making me live. I know I've said things about a "new normal" before, but I just need to take time to adjust to things. I need to surrender to this because at this point there's nothing I can do. I'm fighting to have the "normal" that most 20 year olds have and I just can't have it, no matter how much I may want it.

In the midst of all of this, I know that I need to get my Advance Directive ready. The fact is, even if I don't want it to, the next seizure or energy crisis could leave me unable to do anything for myself. It's not as if I really want this to happen, but I have accepted the fact that this is a very real possiblitiy. It's not an easy reality to accept, but I have to because if I don't, I will be tormented about it for a long time. My thoughts will be consumed on what might happen instead of cherishing the time I have left before the inevitable occurs. It may be years before this happens, and I can't spend my life worrying about it. But, having an Advance Directive ready for an emergency situation. If I can't communicate my wishes, I need to have them written out and I need an agent to be appointed so that they are able to make sure my wishes are fulfilled. Appointing that person is going to be difficult. It has to be someone that I trust and I also have to give them time to think about it, because that type of obligation is a huge responsibility that should not be taken lightly. I need to be praying about this particular decision because it's not an easy one to make.

I'm very nervous about the upcoming EEG and neurologist appointment. I hope they both provide some answers that will help give me some relief and quality of life. More than anything, I need these two things to come closer to realizing my dreams in life.