Thank you very much, Leslie :)
We have all been praying here since January (more so than usual) when I started bleeding more from my throat and mouth again. It was to the point where I would choke on clots, and waking up in the morning with my hair matted to my head in sticky blood was back to a normal occurrence. Thankfully, I have had a bit of a reprieve from that, but we all worry that it is the "calm before the storm" as has happened in previous years, where I would bleed pretty badly, only for it to stop (more like slow down, it never really ceases) before I would have an emergency event land me back in the ICU. Either way, it has granted me some time to sort out this insurance mess...
With Medicaid : Yes, that is pretty much the case, or it WAS pretty much the case. They said that and then finally relented, because they knew I had been going there for years. Now it is pretty much Arkansas saying they will not accept North Carolina Medicaid.
Here is the back story in case you are interested, and for anyone else dealing with similar problems with Medicaid and/or Medicare.
I have been treated for Arterio Venous Malformations since the age of 2, when I started having massive bleeds from the mouth. I won't get into the details of my health and treatments, there is just so much, but I was initially on Blue Cross Blue Shield NC and even with that, it was very difficult for us financially. When my mother ended up unemployed, I ended up on Medicaid. It was great for everything in state, but after so long, there wasn't anything in the state they could do for anymore, and most doctors were afraid to even touch me. I lived for a time in VA and had the same problem.
Found Suen when I was 14, through a miracle, or serendipity...however anyone wants to look at it :) They decided on a plan of action, only to be held up by Medicaid when it was time to schedule it. We were in VA at the time. We were told that Arkansas would take NC medicaid, so we moved back down to NC, and we have family here anyway and needed the help with me. I was in and out of the hospitals here most of the time. Arkansas declined NC Medicaid after they told us it would be fine. They gave us the excuse of NC being behind or not paying all of what was required...some bull like that. I deteriorated. I had a relative that happened to have a friend in law in Little Rock (she is retired now) and she helped us bombard the Governor's Office as well as the bureaucrats at the hospital. I basically had to get to deaths door before they would do anything. No one here was even going to attempt an embo, which was ridiculous because of how bad I was. I was given blood continuously. They finally approved my treatment if Suen did it at the Children's Hospital instead of UAMS. I guess they didn't want the death of a 14 yr old on their conscience.
There was an agreement made where they would take the NC medicaid, but I was a minor then, it doesn't apply now. I don't know all of the ins and outs of myself, and I am tired of the attitude of "well that is the way things are."
I ended up on MEDICARE in my mid-to-late teens. The reason is that I had several other diagnoses to go with my AVM diagnosis and because of all of the medical intrusion into my life and not being able to function properly, I qualified for SSI. It also helped that I had a disabled parental unit.
I loved Medicare. I paid for a supplemental insurance to go with it, but even though my co-pays were higher, I could go anywhere I wanted for treatment within the US. I no longer had some idiot that didn't know my situation telling me that I didn't need it or that there were providers near me that could take care of it. They always think they know better than the patients and their multitude of doctors!
Then I made a "horrible mistake" at age 22 that would change my life forever. I decided to try and at least have a slice of the life I had always envisioned for myself. I got married. I was cut from Medicare and dumped back on Medicaid. My husband is an immigrant. He moved from the UK to be with me. God only knows why. At the time, he had no income. He had put his savings into coming here and being with me. Technically, I was making less than I had been making before, because I had to cover both of us. The only reason we got by is that I had family that wanted to see me happy, and let us stay with them. We thought he would get work with his decent resume, and we were eager to get him back to work, so he could go back to school and get his dream job. He had some hardships that forced college to the backburner, although they were different from mine. He is working now, but everyone is seeing their hours getting cut, even while they are hiring new employees. Suffice it so say, we do not make too much. But then, that is not why I was dropped from Medicare according to their employees. It was for getting married. They said that themselves, multiple times, and I wish I could do something about it, because it sounds SO wrong, especially since one went so far as to say that if I hadn't wanted to lose my Medicare then I shouldn't have gotten married.
I still do not regret my marriage in the least. Everyone deserves someone to love them unconditionally.
On the bright side - I managed to only bleed (from my foot) a little last night and only the top of my sock is stuck to me. Thank goodness for black socks/no blood stains!!