Duck!

I had NIH this past Wednesday, and tomorrow the fam and I are headed on vacation. I am so excited! NIH went well, I got lectured about doing my treatments and I have a sinus infection (again). But my Lung Function is 82%!

The lecture came about because after speaking with my doctor she had said that if I missed a treatment or two not to worry, because my lungs were sounding clear. Well, I twisted that to mean that I did not have to use them if I was feeling ok. Stupid, I know. I’m trying to get back on track with them. She had me double up on my antibiotics for the next 2 weeks, because of the sinus infection. I had a fever when I went in and I have been having some nasty plugs from my sinuses.
As far as my mitochondrial disease is concerned my CF doc is still trying to get someone to take notice and treat me. Hell, I’d be glad if they’d just studied me. Just so someone else could watch what’s happening and hopefully figure out why and how it’s happening. I understand there is no cure and that it is progressive…but there has to be some kind of treatment. Even if it’s just to help me sleep. I have such a hard time getting comfortable enough to fall asleep.

On to the best news…

Tomorrow we are going on vacation for a week! We are going to Duck, NC and I am so excited. We are going with our friends Chris and Damon and their kids (Alexander and Devin). The beach house is close to the beach, so I won’t have to walk far to get there. Frank was saying he might even drive me as close as he can so that I can save spoons (energy). I just can’t wait to be able to watch the sun rise, and feel the energy. I know it might sound weird but I feel as if the beach is sacred. It is a place where the energy of the land meets the energy of the ocean and I just feel closer to Nature. And for those who don’t know my beliefs…I feel that God and Nature are synonymous. (I also say I feel, rather than I believe because the truth is, I do feel it.)

I am taking a camera to catch as many memories as I can! There is internet access there and despite my want to be active, I’ll probably get online and maybe even post some pictures of my Facebook page. I’d love to go out every day, but I know I won’t! The house has a deck so I’ll probably spend a lot of time sitting out on it, breathing in the salty air and just being closer to my family and God. Nothing could be better.

Wednesday? Already?

This morning I woke up congested, and spent my first two hours awake coughing, hacking and spitting. (Pretty visual- I know) Because of my mitochondrial disease this coughing will be my major activity for the day, because today I woke up with very little energy. Sunday I took Kate out shopping to pick up things she needed for Prom, and on Monday Kate and I went grocery shopping. (Because Frank was sick.) So yesterday I was pretty much useless and today I’m still feeling pretty sore. We have friends coming over this weekend and I’d like to not be in pain the whole time so I’m taking it easy for the next few days. Kate still needs some things for Prom but I think Frank is going to take her out to get them. As long as I’m not driving I should be able to go with them, but I’ll have to skip going into the store unless we take the wheel chair. (Which I hate, because people stare. Seriously. You would think that in this day and age a chick in a wheel chair wouldn’t be such a unique sight, but apparently it is. And those who don’t stare get in the way and then are annoyed when they have to move for the chair.)



After coughing everything up (thank you vest) I’m actually feeling like today is a pretty good day lung wise for me. My lung capacity is pretty good for an adult with CF (77%) but the problem is keeping it there. Because of my mitochondrial disease I have exercise intolerance, some days I might be able to do a few exercises while others there is no way I could. So for right now, I’m doing exercises to keep my muscles from getting any weaker. Exercise is important to CF patients, so the fact that I can’t do it is a real problem. Speaking of, I have to call my clinic and set up my next appointment. I’ve been forgetting, which is also mito related. My memory is terrible.



Here lately my sinuses have not been happy with the weather, so I’ve been taking extra meds to keep them in check. I’m still taking my standard antibiotics and *knocks on wood* everything seems to be going well. Tonight I’m making dinner. I picked something pretty easy with no prep work needed, a pasta casserole type thing. Its rigatoni and pepperoni with ricotta and tomato basil sauce, and I’ll have to have help getting it in and out of the oven.

I can't believe it is Wednesday already.  I feel like it should be Tuesday or maybe even Monday, so that I can get things done.