So, how are things?

Well....I could say that things have definitely changed since my inpatient stay. However, there are still many difficult issues that are going to take a while to get ironed out. Some of these things I simply don't have the time or energy to devote to at this time. The problem is, my life is pretty chaotic. I work part time (and take extra shifts frequently, sometimes working 16 hours), I go to school full time (even if it is online, I still have to devote time and energy to that!), I manage two chronic diseases myself, and I have a lot of other things going on in my life. Trying to manage everything on my own is very difficult. I do the very best I possibly can, but at times it feels as though my best will never be good enough. It's not a good feeling. I do my very best to be more positive and just keep persevering. So far things have been bumpy but I am doing OK.

I am slowly beginning to realize how much work all of this is going to take. What I mean by that is that most people can just go through the motions in life and know that things should turn out OK. That definitely is not my life. My life consists of making constant decisions. Decisions on what to devote my small amount of energy to each day, decisions on my medical care and how I will manage it. These decisions affect my life in a very big way. I'd be lying if I said I didn't have fear in making these decisions. Most people my age are able to make decisions that don't have such dire consequences. The thing with me is, if I devote more energy than I have, the consequences can be catastrophic. Not trying to be dramatic, it just is what it is.

Mito patients are some of the most misunderstood patients that exist. We are accused of having "somatoform disorder" or being "hypochondriacs." Doctors tell us that our illness is "all in our head" or "not real." Often because they can't see on the outside what this disease actually does. Many of us have a more "invisible" illness. We live with constant pain, fatigue and the like and yet no one as any idea. Doctors don't know how to diagnose us properly so they often blame the victim. The emotional trauma this causes takes its toll, especially when it happens for a number of years, sometimes decades. I am two years into my second decade of dealing with this disease and attempting to get a diagnosis. Still to no avail. I have had at least a dozen ER visits, one hospitalization, two surgical procedures, four EEG's, two brain MRI's, numerous CT scans, a few spinal MRI's, several pain relieving procedures, dozens of medications, and lots of therapy sessions. Being a person with a chronic illness that is poorly understood does not lead itself well to sanity, especially when no answers are found.

I have made the decision that I will be pursuing a diagnosis for myself. I will be traveling out of state with a friend to see a world-renowned Mitochondrial disease expert. I am also hoping to attend this years symposium.

I have to get through nursing school and the next few months of school. I plan on moving to another town and building a better life for myself. This is all going to be a process and it is going to take time. I continue to pray for God to give me the wisdom, the courage, and the strength to make the decisions I need to make, to get through these last few months of school, and to do what is truly best for me. I trust Him to guide me and protect me during this difficult time.