About Me

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

Sunday, May 26, 2013

Nervous Nelly

So I'm nervous. I have an appointment with my specialist (for mito) on Wednesday. I am not sure what she'll say. Part of me wants her to fix it,
for her to make the pain and fatigue go away. But the logical part knows that is not a possibility. You see, I try to stay optimistic but both of my
diseases are progressive. I have friends with CF (online) and I have seen their struggles. CF progresses at a different rate for everyone, and we
won't all have the same problems. BUT my CF doctor has told me what problems she for sees me having and I have a general idea of what could
happen. I don't have that luxury with mito.

That's right, no idea. Not with my rare mutations, they can't tell me what I may develop. They know that this mutation effects my muscles, nerves,
joints, and most likely my liver. But they weren't able to warn me about the digestive problems. They had no idea that I would have a difficult time
absorbing and digesting, no idea that I would start to forget words, and forget my train of thought. In the car for Mothers Day...Kate says, "Mom I
love you" and attempting to say "I love you too" I said "you're welcome".


That is a whole other rant for another day. Anyway, I would just be happy if it was easier. But no one ever said life was easy. I know there are others
out there who wish life was easier, so I'm not alone. I'd like to think my struggles are teaching me compassion and trust, not to mention they keep me
humble. I'd never be me if I were healthy. I know it. I've learned things that my healthy friends and family have yet to understand. We all "get it" in
our own time, I think.

I am a warrior. I will fight to be me, and I will fight to stay healthy. I'll have to stay on my toes because I'm fighting blind, but I have support and love and I know I can do it.