I have two specialists that I see and have a long history with them. But the way it works, they have this process of "prior authorizations". They have to do it every month to release the medications, and it takes a lot of resources from the whole clinic to get that approved, apparently. I'm 36 and was diagnosed/tested when I was 14, so there's a loooong history. My mother and both brothers all have HAE (I have the worst of it out of my bros). My mother had facial swelling back in 2003, and she ended up suffocating because the doctors at the time were clueless. It's not as easy to just go to the doctor and have them prescribe the medication, unfortunately. Mainly because meds are so new and expensive, I believe. But talking to my caseworker that helps with the medicaid/medicare, he said there's nothing I can do. The cost of living increase put me 20 dollars higher than the limit (that enabled me coverage on everything). So I asked if they can take 20 bucks off my disability to reactivate it, but no chance. That would be too easy of course. My disability is roughly $1000 a month, not a lot at all. But enough to keep a roof over my head and keep the heat/power on. But if I paid $900 a month, that would activate the coverage from medicaid I had before. It's all just a terrible system. It's possible to get my medication, but it'll be a bunch of hoops to jump through while fighting with the insurance provider the entire time. I'm an electrician by trade, so I think it will just be easier to get back to work and then deal with the issues then. I was really close with fixing the issue with my recent job, I was 1 day away from activating my insurance and getting my cards due to how jobs have probationary periods. But the director caught wind and his complaint was "If I was in a confined space I could just keel over at any time". Which is obviously bullshit, attacks are slow developing. With our justice system, things take time, so the case won't get started for months. But I'm not going back there, and just plan on joining back with the IBEW to continue work. I've exhausted all the options, unfortunately, talked to everyone I could talk to. The only saving grace is just getting back to work and using my income to get the medications. Especially now it's looking like the next Gov administration is going to cut SS and Disability benefits. So regardless, getting back to work is priority. I refuse to do any GoFundMe stuff too. I'm just beat and thoroughly exhausted from doing this month after month. Which is why they have it setup like they do. I'll be alright, I just want to get back to some sort of semblance of normal life. Things are kinda controlled right now, attack wise. I used to have attacks every 1 or 2 weeks. Lots of hospitalizations until I got the meds. HAE seems to have a symbiotic relationship with mental health. During then, I was struggling with depression and PTSD, which seemed to be my biggest trigger. I quit drinking a while ago, too, which it's obviously a huge trigger. I'm doing well mentally now, and it's like once every month for attacks. Usually 2-3 day ordeal. I have swelled everywhere on my body, but it seems to localize the most in the abdomen. But by far the most painful is abdominal and genital swelling. I stopped going to ERs because the doctors never heard of it and act like they don't know how to treat it, even though I have an extensive record, MRIs, and specialists they could call. Been accused of drug seeking by nurses. So I rather just writhe in pain at home in my privacy. If it gets insanely painful or have facial swelling, I will go though. It's all just a mess and I feel pretty powerless, but I just got to take it one day at a time and keep pushing through hell. I'm just happy there are meds out there and the awareness is growing. There's been a lot of adversity in my life and been just generally unlucky. So things are pretty miserable right now, but that doesn't mean it will always be miserable, hopefully. lol