You know? When I ask: What more could go wrong? I wish the universe would understand that it's only a rhetorical question, and not a test. I'm not testing the universe to ACTUALLY see what could go wrong, but here it is....I'm presented with: What is happening?
Medicaid....For years and YEARS!!! Would write letters to my son's doctors stating we're not going to give you the money for his Neupogen because the kid is healthy. And the doctors always write back going you dopes! Without the Neupogen, the kid will get sick and die.
So, as a worried mom, I applied for disability for him. Why? Because Cyclic Neutropenia is a disability. If he doesn't have the medication to be treated, he will die. If he has the medication, there are side effects.
He gets tired very easily....Not only did he sleep for 10 hours last night, but he also happened to have fallen asleep for an extra two hours today. Yes, the drug makes him very lethargic, and unfocused.
He's going to school...And I want him to get his high school diploma. But disability and Medicaid don't see it that way. All they see is he's 18. He needs to work.
He got held back twice due to all of his illnesses. And even with the shots, he still gets sick. He just got over a very bad staph infection a few weeks ago. Yes, this is SERIOUS stuff.
So now, disability has determined that my son is no longer disabled. I'm sorry but when does a disability just fade away? Ever?
Now what???
Well, because he was already approved for disability, no lawyer wants to take the case. Now, I have to file appeals that could take months and in the meantime, that means he goes without medication for his illness.
I am so distraught, it's unreal.
How did I single-handedly get sought out?
What about those that fake their disabilities?
I guess they don't count....
Monday, it'll be time for me to be hanging around the Social Security office, talking to someone daily. 20 something miles there and back every day....Because that makes so much sense!!!
~~DJ
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