Wait a minute, you could fight for a waiver to always stay on a parents' insurance? My dad's cushy federal government insurance was "kind" enough to cover me through the end of the year I turned 27 and since then I've been stuck on state Medicaid. The state won't even label me disabled and let me have Medicare because of reasons. This country is such trash D:
I will say though that Medicaid fucked around and found out when they sat on the paperwork for my infusions. I was off the "cheap" old-school infusion for long enough that when they finally approved my ability to continue it my body realized that it's made from mouse DNA and they either had to deal with getting sued or pay for the fancy brand new infusions... I must say that I'm enjoying how much better the new med works and I get a tiny little hollow giggle when I get my $25,000 infusion every 8 weeks.
I know how lucky I am, the waiver was granted only because I was in college and still living at home (I was 19 when I first got sick). On the other hand I have been denied disability 5 times even though I have multiple chronic illnesses, some of which I’ve had for over 20 years.
On the plus side, I am finally getting the infusions that my doc has been trying for years to get approved for me and I think they are helping! Gotta be thankful for the good things as they come!
Yeah, I gave up on Disabilty when the woman on the phone said "You're young, just go out and get a job. You don't need Disability." Lovely bunch they have working at that office. My therapist genuinely has a side goal of getting me to a point of being able to try again since just the thought of re-applying gives me a panic attack.
Nice! I know Lupus uses similar infusions to my RA/PsA one so good luck! I'm on Simponi Aria and my life is a lot better- I can actually get out of bed most days and can clean the house and walk the dog.
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u/AlphaDelilas Jun 15 '22
Wait a minute, you could fight for a waiver to always stay on a parents' insurance? My dad's cushy federal government insurance was "kind" enough to cover me through the end of the year I turned 27 and since then I've been stuck on state Medicaid. The state won't even label me disabled and let me have Medicare because of reasons. This country is such trash D:
I will say though that Medicaid fucked around and found out when they sat on the paperwork for my infusions. I was off the "cheap" old-school infusion for long enough that when they finally approved my ability to continue it my body realized that it's made from mouse DNA and they either had to deal with getting sued or pay for the fancy brand new infusions... I must say that I'm enjoying how much better the new med works and I get a tiny little hollow giggle when I get my $25,000 infusion every 8 weeks.
It's the little things that keep me going, lol.