I agree…
AVMs are torture. And us survivors are true warriors.
Remember, there will be no badass sailors if theres not some rough waves along the ocean!
How are you? Any update?
Isn’t there any job you can get so you get the health insurance covered? I’m also searching for a job, battling my depression at the same time, I need a job I can do from my home but its hard… In America there’s more options though, no?
Wish you the best of luck and keep us updated!
I wish I could say things have been better for me but unfortunately that is not that case. I still don’t have any health insurance or income and I continue to go without the needed surgeries for me AVM. I’ve been trying for about close to 5 years now to get on government benefits, which where I live, is the only way for me to get adequate health insurance to get the surgeries I need. Working is not an option for me currently. And from what I hear, since I got denied government benefits in front of a judge last October, my lawyer says the waiting time for me to even hear back to see if they changed their mind is about 3 years. It’s been about 2 or so years since I had my last surgery and at that point I still needed several more and I haven’t been able to get them. My AVM is much larger now than it has ever been and my symptoms are slowly worsening. I’ve honestly been stuck in a deep cycle of depression and anxiety and I’m just emotionally burnt out. I’m turning 23 at the end of the month and the only thing I have to look forward to is my health slowly declining unless by some miracle I get some way to go back to my surgeon. But I’ve tried everything, absolutely everything. Every resource that has been offered to me, I don’t qualify for an of it because I don’t have an income. In the past I was only able to get 3 surgeries for my AVM. At the time I still had health insurance. They were $50,000 for each surgery. I’m trying not to become bitter but it’s hard when I have pretty much no options right now expect to keep getting denied help by government workers who couldn’t care less about me. I try to just ignore the fear so I don’t go crazy. I’m often on the verge of a mental breakdown. I don’t have much of a support system in my personal life. I’m trying to hold on to hope. Because even if I do find a way to get my surgeries my doctors have already made it very clear that the side effects could leave me disabled, and have also clarified that I will likely need to continue having surgeries for the entirety of my life. It blows. I’m supposed to be in the prime of my youth and my body is failing me. I want to be healthy like all the other 20 year olds around me, who don’t constantly have the threat of heart failure and mobility/walking loss hanging over their head.
Dear you,
I so understand you in all of this.
The heartache, the “why me” and why can’t I be healthy like everyone around.
It makes you so strong.
I was 19 when I got to know about my AVM, mine was so big I could die whenever it decided to rapture. The fear, stress and pressure was too much.
But I’m still here. 31 years old. Am i bitter? Not gonna lie. A bit.
My 20’s was all about living life just as i wanted and trying avoid to think about death and how extremely unlucky I am.
But I must say… I survived it and I am pretty badass.
Don’t let this be your story. Don’t let it bring you down, OVERCOME it. You can do it, I promise!
We and I will be here to cheer you on.
I haven’t been able to get the necessary surgeries to treat my AVM in multiple years now. I’ve tried everything and have been unable to get health insurance no matter what I do. My AVM has nearly tripled in size. I’m at a loss for what to do about trying to get treatment, especially with the direction the US is currently headed.
Heart wrenching to hear
I’m going to try to find some sort of job that will A) hire me despite my condition and knowing that if I’m able to find a way to get treatment I will be missing over a week and a half during each recovery, B) will hire me despite having no work experience or college experience, which will be tough because finding a job in my area currently is like finding a golden goose, and C) finding some form of work insurance that will not only cover my travelling 4 hours away to my surgeon but will be able to cover the type of surgeries I get which back when I still had government insurance and I saw the bills, each of my surgeries were 50k. 
The state of TN may have failed my but I will keep fighting and fighting until I find a plan. I’m not ready to give up yet. I’m only 23. I’d like to grow up and experience life.
Here in AZ, if you have no dependents - the main way people get on access is if they’re considered homeless.
I’ve know two people now that figured out a way to get on to get surgeries covered
But, every state is different
One more thing - maybe if you can share here where you live someone may know of some resources near you?
I live in Tennessee