About Me

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

Sunday, July 18, 2010


So I've been in a really bad mood this weekend. I'm not sure why, there are many things this week that could have done it. Monday - Friday my daughter had a culinary camp and I drove her there every day. I was exhausted every night and am still sore from the driving. In addition to that my car broke down, I don't drive so I have been letting someone else drive it with the agreement that he would be responsible for gas and maintenance...well it's going to be a $300 - $400 fix the he can not afford. We can not afford it either. Also I was looking at some pictures of myself and I look sick. My mom showed me an obit in her local paper for a young lady with CF; and I drove my mother to work (where my Grandmother passed away).

I like to keep this picture up, you know, that things are good. Sometimes they aren't and I hate advertising it. No lectures please.

The weekend has just been blah for me. While I can list many things that happened to possibly cause I have no clue if it was one or all of them. Last weekend was my husbands 20th high school reunion; which went well, I thought. Although the walking was killer. So it is safe to say that right now...I am really exhausted. Frank and Kate have been very good about taking care of me this weekend, and I appreciate them for it. I still want to scream...Where did my health go? CF wise I am doing well
but my muscles and joints are awful. My mitochondrial disease is progressing, or at least I am developing new symptoms. Toes going numb, joints locking up, and joint pain in general are new symptoms. (started in the past few months) What sucks is that I'm not sure if or when these symptoms will get worse. And I'm just really pissed about it.

Friday, July 2, 2010

short update

Since my last update my beautiful daughter just turned 14. I can't believe I am old enough to have a teenage daughter! We had an awesome birthday part for her, thanks again to Fran! I had been telling Frank that I want to celebrate every year because you never know what will happen from year to year, and with my progressive mitochondrial disease I never know when I'll reach the point where I can't do it anymore. Well...I have reached that point, or I am incredably close to it. After her party I was so sore, so tired...it's been a week and I'm still feeling it.

I know there is more to being a mom than throwing birthday parties; but I still feel bad. I'm hoping that next year I will be feeling so much better that I can do it; but if not I'm sure I'll come up with something. I hate that I am not the same physically as I was last year. I mean I weigh the same, my PFT's are up a little bit (which is good) but my stamina is dwindling. It's difficult to explain I guess.