UGH

I haven't updated this blog for a while. I have neglected it for a multitude of different reasons. There are so many things going on right now, I am overwhelmed but as I have said before, it appears to be a common theme in my life.

So anyway...about life.
My appointments with all of the specialists are less than two weeks away. I have so much anxiety and nervousness surrounding these appointments. I have had some bad experiences with specialists in the past. The problem is, Mito is not a disease that is terribly well known. It is much more common than people realize. I just figured out that one other person in the area has had a loved one with Mitochondrial disease. It is therein, I believe, the problem lies.

People say it is so important to find a cure for many disease people are more aware of, Multiple Sclerosis, Alzheimer's disease, cancer, Parkinson's disease, ALS (Lou Gehrig's disease), and more I have not mentioned. What people don't realize is that research in Mitochondrial medicine can help lead to more understanding of these disease and possibly lead up to a cure for these diseases and more!!!

I hate to try to tell my story because people look at you differently when they find out you have a disability. It's as if they completely forget that you are a person and begin defining you by your disease. I realize that I am incredibly lucky to be where I am right now in my disease process. While I have many, many, bad days that are filled with suffering, I am still alive. I am able to eat by mouth some, even if it is very small amounts. I am not wheelchair bound, I can take care of myself almost completely. I know life without having seizures every single day. There are children that don't even make it to their first birthday. There are people dependent on oxygen, or worse yet, ventilators. And yet, I realize also that my life is so very different than it used to be.

I have had to do things I never thought I would do. I have had to advocate for myself to the point that I become furious because I am forced to tolerate idiocy brought to me by the medical field. Doctors have told me that I have wasted their time. I have been called a hypochondriac, and many other things so awful I shudder to think of to this day. Life is a constant battle for stability, for quality of life, for some semblance of happiness. People frustrate me to no end sometimes.

My social life takes a huge blow because of my diseases. Because of IC, I can not go long distances from home for fear of waking up a person who is nice enough to allow me to stay at their house. I suffer from heat intolerance and temperature instability. In Minnesota lately, it has been incredibly hot and humid. My body suffers immensely from all of this.

These appointments can not come soon enough. That's all I'm going to say.