hi to all/update on me

[myooshka]

Wanted to say a quick hi to all. I haven't been on here for some time. My son is six months now so I'm busy caring for him and dealing with whatever the heck you call this illness I've got. Things physically are not great, I'm having problems with swallowing even opoening my jaw very wide. My right side of my face has lost so much muscle it's obvious to friends and family. I saw this head nero at Calgary, they didn't say much are not sure what is causing my problems but wanted all my medical files from the fast five years. So it has been six weeks and no answer back. We are getting desperate, we are going to be going to see some naturopath in British Columbia. I'm just trying to enjoy all the time I have, it really doesn't seem like I have years ahead of me at the rate I'm going. I"m so tired of waiting should I be pushing harder as I'm doing poorly? I don't want to give up looking for answers but it has been fifteen long months.

[mamaoftwo]

Mya, I a so glad to read a post from you. I think of you often. I would push harder - as many people on here say, you have to be your own advocate. It takes such a long time to diagnose these diseases and the wait is so hard. Sometimes I wonder if the wait and wondering/worrying is worse than knowing for sure. Who knows. But you are doing the right thing trying to enjoy time with your baby. I say an extra prayer every night for all of us here with little ones to worry about. I'm here anytime you want to PM.