I made a post on here a while back about some good news I had received. My doctors were trying to work with a program that would allow me to get my surgeries for free. Unfortunately that program has decided they will not cover my surgeries or any portion of them. I’m waiting to hear back from my nurse. She said they may still be able to treat me for at least one surgery but I’ll probably be left with a huge bill that will put me in debt, hopefully I won’t get sued over it if I can’t pay on it. I also don’t know if I would be allowed continue to get the other surgeries I still need if I can’t pay back on the one they might be able to do. Idk. It seems like every time I think I find an option I hit a wall. I’ve given up on pursuing disability benefits for health insurance after being denied then since 2019. And I was going to try to find a job I could handle to potentially get Obamacare but I’ve been without a car and so far no way to get one in my foreseeable future. I’ll keep you guys updated if I’m able to get at least one more surgery for the time being. Had a mental breakdown today. Didn’t get much support from my family. All that did was make them mad. Oh well. I’ll keep pushing forward for now. I hope I won’t always be in such a dark place.
Sorry to hear that news. I hope you are able to get the next surgery as you have said, we are so lucky here in Canada with the Public Health care. It can be slow, and frustrating and higher taxes but we can get the care. I wish I had more suggestions for you! Please do keep us up to date, and we are here for you good news or bad. Never worry about venting, we are here for that as well, and it is good to get the frustration out! Sending my best wishes, John.
Thank you 
Oh I’ve no idea what to say that’s just such, such a bad deal! The US is such a tough place to be when you’re not well!
Keep at it, I think. That’s just about the only way.
I take my hat off to you for dealing with this sort of disaster. Really, don’t put yourself down in any way because this sort of madness would break anyone.
Lots of love,
Richard
Thank you . I’m going to continue to try to take it one day at a time, just like I have been since my diagnosis over half a decade ago. If I can at the very least get one more surgery, that’s better than nothing. I’m extremely frightened about the pain management. I am completely traumatized from my previous surgeries. If they won’t address my pain concerns seriously and adjust medication accordingly, I don’t know how I’ll make it through the recovery this time, especially since my AVM is more larger and widespread now than it has ever been.
No, I understand completely. Lots of love,
Richard
I really hope that the US one day adopts a better health care system. It would certainly lift a huge weight off my shoulders.
Sadness me to hear things like this, and really opens up my eyes to the reality of what we live in
I was talking to Starbucks employee guy last weekend, he works there just for health insurance for him & his partner. They apparently have great health insurance & provide it as long you work 20 hours a week. Their insurance costs half of what I pay at work and is way better. He has serious with his back, that’s why he needs the insurance.
I just try to keep my eyes open to everything around us, to use to the best advantage if necessary.
I’m waiting to hear back from my surgeon because I think they might give me a surgery even without insurance and just send me home with a big Bill. I don’t know if that would prevent me from getting other surgeries or not, I’m going to ask him whenever I hear from him. If I can get another surgery and recover well I’m going to continue to try to figure out a job situation to hopefully find insurance that will cover the rest of my surgeries. It’s been very taxing on my mental health, especially lately but I’m not ready to give up yet.
My son had no insurance when all happened. Found a great broker that found him Affordable Care Act insurance with $ 350 payment. Have you tried all brokers to see what they can find. My son’s insurance covers almost everything. You live in Tennessee and us Texas so plans can differ greatly.
Unfortunately they’ve told me I need to have an income to qualify. And myself and my family are so poor that we would struggle to afford a plan even if it were only $50-100 a month. I’m struggling to find a job because I cannot afford a car. My car tore up a handful of months ago and I’ve been kinda left stuck between a rock and a hard place. It’s all been very trying.
My son didn’t have a job at the time he got insurance. Not sure how the broker did it to qualify him. So you don’t qualify for Medicaid either being in such financial need?
Unfortunately no. For Medicaid they told me I need to make atleast 12,000-15,000 a year. I have no income at all. So apparently you have to be poor but not too poor. If I could find a way to get a car that would be a big help because then I could find a job and hopefully find health insurance through that.
Reached out to my son’s insurance broker to see if maybe they have contacts in Tennessee. I will let you know.
Thank you, that is extremely appreciated.
I’m in Texas and had no problem getting on 100% Social Security Disability which allowed me to go on Medicare…I was fortunate to fight through the pain and bleeding episodes and work for 36 yrs with good paying jobs. I now also have UnitedHealthcare AARP as a supplemental insurance with no premiums but it limits you on Dr’s who accept it but I’ve had no problems finding Dr’s. You’re law’s may be different but don’t see how you would not qualify for Social Security Disability and Medicare since that’s government and not state. Good luck
Yeah I had a great lawyer and fought for disability for around 6 years, even went to court in front of a judge. Have over 1,000 pages of medical records and multiple letters from my doctors at Vanderbilt. It mainly came down to they denied me because of how young I am and how misunderstood AVMs are and they I assume thought I am over exaggerating because I am young. They denied me for reasons such as “being able to bathe myself” and “being able to go to the grocery store”, as if literally everyone doesn’t do those things. I gave up going that route after my last denial from the court because I don’t have time to keep playing their games. It was a huge fight and I accepted that loss.
That’s ashame, I was 56 at the time, fixing to be 65 and had none of those types of questions arise. Maybe because I worked so long against Boston’s recommendations and had paid in so much to the system. I’ve had friends my age that have been on Medicaid since their 20’s who rarely worked, not up to speed on Medicaid so not sure how it differs.
Don’t give up, I’ve been bed bound since Christmas because a pain management Dr wouldn’t listen to me and almost killed me by cutting my meds to much to fast, on the rebound now thank God
I’m glad to hear that you are doing better. As far as Medicaid, they told me I need to make about $12,000-$15,000 a year to qualify. Since I have no income at all I don’t qualify. So they want you to be poor but not too poor apparently. I hope you continue to improve. Best wishes
I brought this up to my wife, she said in AZ you pretty much automatically qualify if you are considered homeless. I know a few people who used that to qualify of access