Here's the thing...

I've been so frustrated lately. My posts have more than expressed that, I know. My weight is down, the thought of food repulses me. Everything I eat makes me feel sick. I have been doing my best to increase my liquid intake as much as humanly possible and eat things like yogurt, jello, and other things that are easy for me to tolerate. However, no matter how much I try things just aren't improving like I would like them to. I finally got through (a little anyway) to Dr. P. He started me on hydrocortisone for Adrenal Insufficiency, but I am really nervous about starting this medication tomorrow. I looked at the fact sheet provided by the pharmacy and it was more than a little overwhelming. There are a ton of side effects and things to look out for. Dr. P wants to see me in ten days after I begin the hydrocortisone. But I'm scared, frustrated, and a little angry. I know I need to get a specialist on board, meaning a specialist for Mitochondrial Disease. But even that is easier said than done. I have printed out information on Mito and some specialists for Dr. P and I will be giving all of this to him at my next appointment. My greatest fear is that Dr. P is going to be reluctant to get a specialist involved. God love him, he really does want to help me and wants to be able to do everything I need. The fact is, he can't. He simply does not know enough about Mito to purpose successful ways to treat the symptoms it is providing. I'm sure part of what a Mito specialist is going to purpose may have a thing or two to do with artifical nutrition. In the near future, that may mean TPN.

Things have been confusing as well. I am hoping to move into an apartment on my own but I am also very concerned about my safety living by myself. It will be a nice chance for me to have some independence and enjoy having my own place but at the same time it is a bit overwhelming. Not to mention the fact that it just adds more complications to an already complicated situation. I know that's just the way life is, especially when you have a life threatening and chronic illness. But, it's still frustrating. I am very excited about the possibilities involved in this. Not to mention that I can finally organize things the way I want them. I am already looking at potential shelving options so that I can better organize my school things and my medications. I am also wondering if I am going to need to look at physical therapy and some other things to help improve my quality of life. My muscles in my feet and legs are getting especially difficult to move and also fatigued. All of my muscles get fatigued very easily of course, that's because of my lack of energy due to Mitochondrial disease.

Tomorrow of course is Mother's Day. I am having lunch with my mother, my sister, my aunt and my grandparents. This of course will be after I get home from Mass and let my dog out. I work again tomorrow and then Monday I have a day off, which is very much needed. I have a lot to think about and a lot of things to go through.