When I first found this site, I thought that I would be on here every day. Lately it hasn't turned out tho be that way.
I think a lot of it has to do with the fact that I feel that since my AVM was in my neck and my AVM story is atypical of what was supposed to happen in the way of treatment, I feel that I'm not much help to anyone. It does help to be part of the Extremity AVM's group, but even there, I feel out of place and not able to give any valuable information to anyone.
But today there was a notification of a post in Extremity AVMs that I thought I could respond to in a way that was helpful. Then I saw a post on the main page which I felt compelled to read and reply to. I then got comments on my comments, which made me feel good that I came today. While I was responding to comments, I took the time to chat with someone. I han't chatted in awhile with anyone, and that felt good as well.
But after I got off, I felt extremely sad because this site hit just left of home of a terrible tragedy. My daughter's boyfriend's sister died of an aneurysm on Sunday. I didn't know any of this was going on becaues my daughter was hopeful that somehow Amy would pull out of the coma she was in, but that was not meant to be.
I found out about Amy 's death through my daughter's response to a Facebook post. She called me after I commented on the Facebook post and said why she hadn't called. Wehn I asked her what happened to Amy, the first thing she said was she vomited and lost consciousness. My stomach sank because I knew that that some sort of brain malfunction had occurred. But the doctors though she had choked, which caused blood not to flow to the brain. It took them awhile to figure out that she had an aneurysm. Knowing that there usually are warning signs before an aneurysm is discovered and that people live to tell the tale of them, I asked my daughter if there had been anything happen prior to Amy's death to indicate that there might be something wrong. My daughter said that Amy had been experiencing numbness in her feet, but the doctors had said it was nothing to worry about.
The town I live in isn't that small. One would expect health professionals to know to do an MRI to be on the safe side when it comes to neurological issues. And the hospital in my community has been running ads during the Olympics bragging that their goal is "to get it right the first time".
I know that many people have experienced similar situations where their worries were dismissied or that their AVMs were misdiagnosed only to have an AVM rear its ugly head in some horrible way. That is why this site is so important so that people can have a place to go where others understand what they've been through and where people can learn about AVMs.
I honestly don't know when I will be back other than to respond to nay comments on this post or to try to give help in the Extremity AVM's subgroup when I can. But what I can tell you is that I have talked about this group and Ben's Friends more than once online so that people with rare illnesses have some place to go and talk about them. There's been more than one person who has been grateful for the information.