~seizure FREE me~

~seizure FREE me~

Saturday, May 1, 2010

A moment of weakness

Because all signs are pointing towards Atty having Mitochondrial disease (still waiting for results from the biopsy) I started doing some more research. I did research about Mitochondrial disease around the time that he had the severe reaction to his two month vaccines, but being as he is over three years old now I had forgotten a lot. I started watching videos about kids with Mito and now I can't stop crying. I feel anger (I can't really explain that, but I feel it in there somewhere). Frustration. Despair perhaps. Actually I really don't know how I feel other then the overwhelming sadness. MERRF or MIRAS seems like the most likely diagnosis for him, but there are lots of others. Both of those have lots of unknowns. Lots of things that Could happen. Not that will, but Could...the unknown is horrible. This is all so overwhelming. I keep thinking about him, how he was a few months ago. Just a few month ago. Now I can't stop crying. I know I'm getting ahead of myself, because we haven't received the results yet, the words haven't been said in all finality. But I feel sure of the diagnosis, there are just too many things lining up that point to this. I know that it's a waste of time to cry about this when I don't have a final diagnosis of Mito from the doctor yet, but I guess I'm feeling weak at the moment. I'm letting my fears take over. It's a pretty easy thing to do right now, I'm fighting a losing battle with my anxiety, something I've struggled with my whole life anyways. Sometimes I just need a good cry so that when I am faced with the battle for real I will have the strength to fight my way through. I'd rather have a break down at home in privacy then in the doctors office. I was going to post about how the modified Atkins diet is working (yes we are seeing some awesome results right now) and how it's not working (he's seems to be having a reaction to the dairy in the diet as I feared he would). I guess I will go into detail on that later, right now I feel really distraught and I wanted the Atkins post to be a bit more upbeat.

1 comment:

Kat said...

Oh hon, I'm so sorry. That is a scary diagnosis. I just went and looked it up online to learn more about it. There are so many different types it is overwhelming looking at it. Let's just pray that if that is his diagnosis that he has a very mild form. It sounds like many people can live perfectly normal lives once they learn how to treat it.

You continue to be in my prayers. And of course, lots of prayers for Atty.