Waiting

I’m still waiting for my Neuro appointment which isn’t until August now. I’ve been waiting to get results from my MRI since March! How crazy is that. So I don’t know whether my AVM is still there or whether or not I need more radiation.

My loved ones are eager to get the results but it doesn’t matter to me. I’m not sure why. Whether it’s good or bad news, it doesn’t make much of a difference at this point in my life.

I’m starting to slowly do exercise again but I don’t think I’ll ever feel confident doing it. Like I’ve said before, I loved playing sports and being active but the thought of having a bleed made me stop all that. Literally every time I would exercise, I would get a seizure. The confidence is coming back slowly but I think the fear an AVM puts into to your mentality – that’s something which will remain. For me anyway.

Waiting. Waiting. I haven’t had a hospital visit in months which is very strange and relieving. I almost want something to happen so I can remember what it was like, how it felt. That’s an odd thing to say, I know. I just had forgetting what made me, molded me into the person I am today. It’s been such a huge part of my life (almost weekly doctors visits, the specialists, the eegs, the medication, the seizures, the paralysis, the brain cramps), I can’t imagine living without it. Weird.

Hope everyone is well.

I almost forgot how hard it was to go through all that and I was only 16. My avm is gone now and I live my life as normal as I can and by normal I mean I was able to pursue my dreams and do the things I was never able to even think about doing while I had the AVM. It’s hard to see past it but eventually you will have to. I live with some minor side effects of my gamma knife radiation but I wouldnt trade that in for the world. This type of illness makes you feel more alive when you know you beat it like I did. Good Luck to you.

Thanks so much, Jay. It’s really nice to hear about other people’s experiences and how that felt after their AVM went.