About Me

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

Friday, January 10, 2014

It does exist!

Yes, mitochondrial disease is real. How do I know and doctors at Boston’s Children’s Hospital don’t?

I’m glad you asked.

Every day I wake up and I lay in bed assessing my energy levels for the day. It doesn’t help every time I take it easy the night before. I’m like a cell phone battery. You know the ones that keep a charge for 5 hours one day and 2 the next. Anyhow, I assess my energy levels. I have to decide if I’m able to get out of bed and get dressed. Most days I come down stairs in my robe, and my husband brings me clothes and helps me put them on. Then when I get down stairs I have to decide to I eat breakfast and risk being in the bathroom all afternoon? If I eat I will be using energy to digest my food, and if everything goes well I may have energy to go out and do something. Yep. That’s right eating is hard. Digesting takes energy.

Next I take all my meds and do my neb treatments. I’m usually sitting at the computer for this and able to hop on line to facebook to do a quick check in on family and friends. Once I’m done, I get up and walk back to the couch. Do I sit and watch TV or do I take a nap?
If I don’t take a nap, and decide to help my husband with grocery shopping my night is planned for me. When we go I have to get a cart to push. If I sit in the wheel chair for the whole time my upper legs and thighs will hurt. But if I’m up and walking my lower legs and feet will hurt. Both ways cause my hips to scream at me…

But I WANT to go out. I WANT to be active. I WANT to breathe fresh air. Sometimes my body cooperates, but others not so much.

I think about these things, and I make choices everyday; that is how I know it is real.
I live it.
I hurt.
I’m tired.
I’m confused.
I’m uncoordinated.

People with mito are not “imaginary” we are VERY REAL and we NEED you to help us.

UMDF.org or Mitoaction.org