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Jwheel86

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Jwheel86 last won the day on February 2

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  1. Only the US Government could design a program where people with disabilities get fucked so hard. If I get laid off, very possible, I'm required to take Unemployment by Social Security. Unemployment is unearned income which means I lose access to the Social Security Medicaid working disabled program I'm on. I then revert back to SSI and the unearned income could reduce my SSI check $0, which would kick my ass off Medicaid. Currently scrambling to switch off Social Security Medicaid to North Carolina Workers with Disability Medicaid which won't screw me over.
  2. Ugh, the SMA community, especially in the New York area, is not good right now. A lot are scared their aides are going to get sick and get them sick. People are spreading critical care criteria being drafted in some states which specifically denies care to those with SMA. A lot of people with SMA are on vents normally and terrified that if they are hospitalized their personal vent will be taken by the hospital. SMA community is normally very up beat take on the world, not now.
  3. My town in Eastern NC is going on lock down tomorrow morning with several main roads in closed.
  4. He's gonna say we're reopening in the country, governors won't listen, the economy won't recover, he'll blame the governors. That is how this plays out.
  5. My county in NC is using the buses to deliver breakfast and lunch to every k-8 student in the district.
  6. My aide's husband works at a gun store, the Instant Background Check website keeps crashing because sales across the State are through the roof.
  7. My county just reported it's first case, recent international travel.
  8. SMA community is starting to panic, a lot of hospitals are cancelling Spinraza doses. There is a good argument that the dose is too low or not frequent enough, so going beyond the normal 4 month period is going to really suck, especially since a pulmonary infection is not the ideal time for a muscular decline.
  9. Fun story, Danbury Hospital almost killed me. When I was 5 years old I got the flu and was admitted to Danbury Hospital instead of the Muscular Dystrophy Association certified hospital 2 hours away. The pulmonary doctor at Danbury Hospital insisted everything my parents learned about fighting pulmonary infections from the MDA hospital was wrong and instead just put me on oxygen, no assistive cough, no Neb treatments, no suction. He was also unavailable through the night and refused to consult MDA doctors (my local pediatrician had to come in at 2 am). 12 hours later I was on 100% oxygen and the pulmonary doctor told my parents "I don't know what to do". My Dad insisted I be transferred, a LifeStar helicopter rushed me to UCONN without my parents aboard (little scary for a 5 year old who can't breath). The pilot told my Dad don't try and race his helicopter, otherwise he'll have to pick my parents up too. I landed and the doctors there put me on bipap for the first time (I'm now terrified as they are shoving a mask over my face that's pumping air into my chest at high pressures). My parents arrived and 12 hours later I was off oxygen and in my wheelchair eating ice cream. I saw the UCONN pulmonary team then on until I was 18, fuck Danbury Hospital.
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