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Part 2 (sorry for the length!) I should have been tremendously happy. I do feel like I got a completely new lease on life, and a second chance to live life on
by disabled 7y ago
Part 2 (sorry for the length!)
I should have been tremendously happy. I do feel like I got a completely new lease on life, and a second chance to live life on my terms. My teen years were very rough, and my 20s were extremely rough. And all of the sudden, I am tremendously better, and I all of the sudden turned 30. Life has passed me by, and it has revolved mostly around trying to survive with constant, severe suffering involved for about 15-17 years. It invoked a crisis for me, and now I am trying to soul search and find out truly what I want in life, now that I actually can enjoy things in general.
Also, I properly vetted the situation, and there is a very, very high chance statistically that I will lose access to the only medication that has worked for me, that blood product, due to the Affordable Care Act Supreme Court Case (which will be released late June 2020). This is based off of ~8 or so rare circumstances where the Solicitor General does not defend a Supreme Court case, for the Department of Justice, at the Supreme Court level. Let's just say that statistically the odds of it going well are extremely bad, and I want to hope, but I cannot afford making any bad moves.
I happen to be a dual US|EU national, for which I am extremely grateful and fortunate to be.
This 4th of July is going to be very sentimental for me. This may be the last time I celebrate this holiday with my family, before I am forced to uproot my life in the US, due to potentially no longer being able to access the one medication I need to stay healthy.
I will have to go to Europe, if so, where I have a legal right to access healthcare. Trying to get my care set up properly is going to be an enduring process. I see several providers, and I am also on a lot of obscure and unusual medications. However, there is no country in the world that handles rare diseases better than Norway, so I do know where I am going to settle.
Basically turning 30 made me realize that I am going to have to uproot my life and make a new home, so I can stay alive. I have been in survival mode since I was 18. Plus, it is believed that the third leading cause of death in the US is preventable medical errors. I cannot take that risk when I have a ton of medical problems. It shouldn't have to be this way. It hurts, but I suspect things will be a lot better in Norway.
I know this post was wild, but maybe you got some beneficial insight out of it, that perhaps you can relate to. I hope so. Either way, I am sorry for rambling.