A journey

I am really struggling again. Dr. G did call me and informed me that my abnormal labs to not necessarily lead to a Mitochodrial Disease diagnosis. She has not completely ruled this out, but unfortunately she didn't seem to have any other ideas. The problem with this is that Dr. G seems to be caught up in the way children present with Mitochondrial disease. People with adult onset present much differently from children who have onset early in their childhood or from birth. I feel as though I have to be dying to even get an iron clad diagnosis. I don't really know how to explain this to anyone, but I just know that I have this disease. People probably think I'm crazy, but I honestly couldn't care less anymore. I know my body, I've lived in it for more than 21 years. I have dealt with this disease since about the age of 12. There are things I used to be able to do with ease that I can not even think about anymore. Running for any amount of distance is fairly impossible. I can only run during work when I absolutely have to. Some days, showering or bathing exhausts me. I have to fight just to be able to eat what little amount I can. The only weight I can really sustain is about 95 pounds. Mito has forced me to deal with constant pain, constant nausea, headaches, occassional seizures, and overpowering fatigue. Having been told I was simply anxious and depressed for a number of years, all of this has taken a huge toll on me. Most members of my family seem to be unable to support me through all of this. I deal with two incurable conditions, one of which has the potential to take my life younger than I planned. All of the expectations I have had in my life need to be either altered in some way or completely abandoned. Each and every day, I lose more of myself to Mito and I have to adjust all of my expectations. I realize that I am a strong person. I have had to be from a very young age. Most of my childhood I raised myself with the exception of my grandparents. Without them, I can honestly say I may very well have died. Dealing with that reality is very difficult. I know that dwelling on this isn't going to do anything. But, it's going to be a constant process.

I am reminded daily that I can not do any of this on my own. God is the only one who can truly help sustain me in all of this. The only way I can think of to be able to deal with this is constant prayer and meditation. Sitting in my pity pot really isn't doing me any good. Last weekend I was able to attend Mass. Mass is the only time I can truly say that I feel closest to God, in ways that I never though possible until I experienced it. During Communion, I feel that I get a little taste of heaven. I feel those who have gone before me with me in a way that is almost tangible. Aleia and Riley sit on my lap and snuggle, Papa and Bethie sit next to me. Grandma is near me also. It's as if God knows that this is something I need, something that helps me make sense out of life. When nothing makes sense, when it seems that the world is against me, that I will never see true happiness or feel a sense of peace ever again, I go to Mass, receive the Eucharist, commune with God. These are the only moments I can truly say that there is peace in my heart, in my mind, in my soul. Being someone who is "broken", I think, means that I have a spiritual awareness far more evolved than most young women my age. Faith is the only way I can think of to make sense of life. Life can be hell, it can be beautiful, it can be frustrating, ridiculous, and a wonderful journey.

In less than a week, I begin my LPN program. This means that hopefully in May I will be ready to take my boards to become an LPN. I have literally waited years for this time to come, and many times I thought I would never actually be able to see the "light at the end of the tunnel". Thankfully, my friend Rhonda has gone through the same program recently and has already been a wonderful help in that she gave me some books that I need. She has saved me a TON of money. The thought of nursing school is just a bit intimidating, but I have faith that I can defintely do this.'

The Energy for Life Walkathon is just DAYS away. Team Sami, my team, has raised nearly $600. Our original goal was $500, so we definitely exceeded our goal, significantly. The walk is going to be a great time to raise awareness, spend time with my "Mito family", and just enjoy myself before I have to return to school and juggle a very hectic schedule.