Nervous upcoming doctor appointment

Have an upcoming genetic doctor appointment and I am nervous. Hoping to get the paperwork I need before the appointment and from there will see if I need to get a spinal done as my cousin has had to do regarding her type of mutation. She may be involved in a study and if I have the same makes me wonder if I will become a part of the study as well. Nervous about having to discuss that I am starting to notice certain traits in my kids that may be early signs/symptoms of mitochondrial disease, which worries me greatly. Keeping a positive attitude and taking this all in stride is about the only thing I can do right now to keep my sanity.

God Bless,
Christina

Finally getting some sewing done

After a few days of trying to recover from the Christmas holiday weekend, I was finally felt good enough to sew some and work on my embroidery done. I hope I can keep this up I have a quilt I need to get busy working on. It is not easy to try and sew when you are tired, in pain, or having tremors so bad you can't hold anything. I am hopeful :-)

Let me introduce myself

Hello,
I am a proud momma of two and am a sufferer of mitochondrial disease. This is a blog to share my experiences, my hopes, my fears, and also hopefully to help others who are suffering from this disease. I have had a very rough last year and half since my mito has progressed, and it has been a true test of my faith and strength.
I started having very severe fatigue and muscle tremors after getting the stomach flu. Little did I know that I had a genetic disease in which that if you get sick from the flu, have surgery, other extensive things to your body, that people with mito, this is very bad for our system, and can make your symptoms that much worse. So after several visits to different doctors, which I will share later, I found a genetic doctor who has helped me. I also have had tremendous help from my cousin who suffers from mito as well, her doctor was the first to mention mito to her. So between her and my genetic doctor, I have been on the path of discovery.
Many days are very hard for me, either from pain or fatigue, or from general self despair of the fact that I will never again be the crazy energetic mom I used to be and that my life will never be again without this disease. I am trying to learn and grow from this. I hope as I write, many of you will want to share along with me, and hopefully we can get more research and support for this disease.

God Bless,
Christina Frisz

Why oh Why?

Why oh why is it 1:30 am and I am still wide awake? I feel so tired all day long, try to get some housework done, but as soon as everyone is in bed and quiet I all of a sudden have a bout of energy,,,,sigh I wish I could put it in a cookie jar and save it so when I get up to start my day I could get that energy out of that cookie jar and use it to play with my kids and clean my house. Oh if only they could invent that, how awesome would that be my fellow mito soldiers? Sweet sweet dreams everyone. I think I will read, that usually makes me sleepy. Wish me luck. Good night to all, blessed dreams. :-)