Hi everyone. It’s been forever since I’ve been on here or since I last posted. The past year or so I have been struggling with extreme anxiety and depression and panic attacks as a result of all of the negative changes my AVM has introduced to my life. I have been due for another embolization for over a year but haven’t gone back to Vanderbilt because the last 3 have been so traumatic and excruciating that I’ve been too afraid to go back. I regret that because now, my tenncare has ended since I’m over 21. I tried to get back on it and no dice. I’ve been trying to get on disability for over 2 years, been denied over and over. Went to court on October and thought things were in my favor, thought things were start looking up, but no, I just got denied again. I’ve been beyond stressed because with no insurance I have absolutely no way to continue to get the embolizations I need, and there’s not much I can do about it. I wish Tennessee had more options for health insurance for low income residents. The last time I spoke to my doctor, he said I would need 2 or 3 more embolizations in a row before I could take a break from getting them for a little while. But now I have no way to get them, and my symptoms are started to get worse. For a while they weren’t very noticable but now I’m having really bad throbbing and like a achy stabbing pain throughout the area. I just keep hoping that maybe I will find some way to get more treatment. I don’t know what to do if I can’t. Sigh. But enough about me. How is everyone doing? I hope you all are managing well. I feel awful for disappearing for so long but my panic attacks were getting triggered very easily for a while so I decided to take a break from reading about things related to AVMs. I think, if I had one wish, it would be that AVMs weren’t a thing. It seems like, they have a way of making every little aspect of the person’s lives they affect as difficult as possible.
I wish it was under better circumstances that we heard from you. I’m Canadian, and while we often wait a long time for care, we can always get care. I wish I had some advice to pass along, maybe some of our members may be able to provide suggestions. Coming from someone in a public health care system, it just doesn’t seem just! John.
I agree 100%. It’s so hard to get good health insurance if you can’t afford it, where I am at least. It almost seems like the poor people are just expected to suck it up and hope for the best, lol. So stressful.
Just an addition to your other post - but, it’s why we have such a large homeless population in need of critical medical attention
No one actually cares - and, if you yourself are down & out - well, it ain’t pretty. Especially if you don’t have anyone to help you out.
So true. I hate that this is the reality.
Hi moong, I’m writing to you from AZ and wishing you all the best. I don’t have the energy at the moment to tell you my AVM/seizure/mental health history. We definitely overlap and I hope I can provide you with some insights in the future. You have already helped me. Best wishes, Greg