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I am a wife and mother who also has cystic fibrosis and a mitochondrial disease.

Wednesday, May 2, 2012

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.