So, last September it came across the desk of a young social security disability employee (she sounded like she might still be in her 20's, actually, teens, but I'm assuming someone has to be at least a college graduate to work at the ssa) that my oldest was turning 18. That meant that the benifits he was recieving as a child of a parent with disabilities would come to an end.
We were prepared for this. We knew this would happen.
However, as this young girl read the file, she read that my disability began with the birth of this said 18 year old.
So, she got it into her head that ...if the myasthenia gravis began with his birth, then obviously, if he is turning 18, then I must be fine now that he is an adult! Makes perfectly good medical sense right?
So, even though, I'm scheduled to have an every 3 year review of my disability, and I'd just had one done the year before (literally, done in 2006) I had to go through the process again, simply based on the fact that my son turned 18 and my disability started with his birth.
Trust me, the counselor in Tulsa in charge of my case, NOT young, was less than amused. Especially when I showed up in person in her office. I did not plan it that day, but, I didn't look good, it was not a good day. It happened to be a bad day ...dark circles, drooping eyelids and all.
Anyway ...once the paperwork is in motion ... it's in motion and the caseworker can't say "I've seen this woman and she looks like hell ... case closed!"
So, I had to go through the whole recert process.
Somehow, I got it into my head that I was going to be denied.
My brain went into overdrive. How was I going to go to work? What would I do? How would I manage when I have days I spend most of the day in bed? How am I going to work when most of my work skills are waitressing or grocery store clerk ...both physically demanding jobs?
What in the world was I going to do?
Add all that to my already too much to do ... I was terrified. But, I kept that fear to myself. I didn't even tell my therapist that this fear was going through my brain.
Even though each week she'd tell me of all the MG symptoms she could SEE ... (ok, in all fairness, her mom had MG, so she's a bit skilled in visualizing it)
I get the letter from SSA ...
Not only did they continue my disability ..but I don't get reviewed for FIVE years instead of three. Because "you're health has obviously declined to the point that we don't need to reveiw you in the 3 year period of time. We will review you in 5 years and see how you are doing at that time"
um ... ok.