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

Monday, July 15, 2013

Update 7/15

I apologize for not updating sooner. I had an appointment with a mito specialist from Children's hospital, and she added a few new supplements. Well not really new but ones that I had stopped. Co Q 10, I had stopped because it gave me a rash, and B Complex. I had stopped the b's due to money. But they did help and I have started taking them again. (The b's themselves are not that expensive...but when your buying a lot of them it is!) So I also got a list of things that I have not done yet.

- Blood work - OK I got this done right away, but only because I had to get it done before my IV therapy. LOL
- Cardiologist - I need one. I need to have a work up once a year. An Echo specifically.
- Ophthalmologist -I need to start seeing one of these too. I have a pretty bad vitamin A deficiency right now, I wear sun glasses any time I'm out and since my eyes are not adjusting to the light difference I don't take them off!
- Physical therapy - They've actually suggested this before but I didn't have health insurance. Now that I do I might be able to get a few appointments in...but Medicare only covers so much. They also suggested aqua therapy. Man I miss not having a pool!
- Swallow study - I had one done last year, but I have started to have problems swallowing.

Mito symptom listing

I have to go back, of course; with all of these things. I'm still getting my words mixed up. You know that moment when you forget the word you want to say...but its on the tip of your tongue? That happens to me all of the time. Maybe 6 times a day on average. So that is a concern.

I still have good days and bad, since getting a different dose of the Co Q 10 and taking my B complex every day I've had more energy on a good day lately. Now if I could just get rid of those days where I wake up and can barely move!
I'm not sure that I have mentioned it on her but I started Protonix, and it is amazing. It really helps! I still take enzymes of course, 6 - 8 with meals; but the Protonix really helps with my GERD. I have been doing letterboxing with my husband and daughter so that is getting me out of the house! Plus I have a friend who has a "games day" at her house every now and then, and we play D & D at my house every week. I think that getting outside and participating in social gatherings with friends and/or family is helpful for those of us with an illness that restricts activities. For me it really helps my mood. It's easy for me to feel down, so the little things are what keep me in a happy mood.