Over a year later....

Well, I guess i am back in action. Because of high demand (6 signs of support on facebook) I will resume posting on my blog. I am not sure what will come of this, as sometimes i am hesitant to share stuff because the big wide world can read it. But I will see what authentically comes up, as the story of my life is crazy, funny, scary and totally predictably unpredictable. Casey will comment on my bad grammar but he will just have to deal with it ;) I will probably spell stuff wrong, and sound like a total idiot, but I plan to try to keep this up.

I am reading Julie and Julia, in which Julie is keeping a blog about cooking all the way through Julia Child's cook book. She is encouraged by her readers and feel that they "need" her. I guess in some respects i am doing this because I "need" YOU, my readers. My life is so crazy these days that i feel like i need to share it and document it. To allow my life to not seem completely meaningless I need people to witness it.

I noticed the blog post that came before this one, Memorial day last year. I would have never guessed that I would be where i am today one year ago. My day now is scheduled with treatments and eating and sleeping, with appointments scheduled in between. I spend a total of 4 1/2 hours doing respiratory treatments. This seems outrageous to me (and my doctor) because just a few months ago i only had to spend at most 2 hours. This is not only because i need MORE, but because i needed to change the modality that it is administered. I can no longer use the VEST, a mechanical device that helps clear my airways which I can use completely independently, but now it makes me suffocate and does not clear out the viscous and vicious crap that is stuck in my lungs, as well as it used to. So i now must do the nebulizer treatments separately and it takes 45 minutes for nebs and 45 minutes for CPT beatings. So my life is consumed 3 times a day. I also have to plan out when i eat...
I am on the early bird special dinner diet. I must eat by 6pm if i am to get to bed at a decent hour. I need time to digest before i cough for almost an hour. The alternative is not too pretty. So basically i am trapped by this disease these days... I am trying to live as well as i can, but there isn't much left that i can claim as my own. The other thing is that my mom has to make my meals and help me with things like laundry and dishes, because i just don't have the time and energy. It is a family game, my mom, dad, sister, casey, and a variety of you wonderful friends help to keep beating and feeding me. It is a task to keep weight on and work so hard at coughing and sleeping... Doing nothing takes a lot of work!
Today is Thursday so my sister is coming! YAY.
Right now the Oxygen guy is here taking my R2D2 human-sized tanks and filling them with icy-cold liquid oxygen. It takes about 20 minutes for him to roll them out fill them up and bring them back... it is just constant motion keeping me breathing...

Now it is neb time again...