social insecurity

My lawyer has been pushing me to call medicare to see if I'm entitled to anything.  Finally, I sucked it up and called last week.  Completely contrary to what I expected, I talked to a most lovely and kind woman named Lisa.  We soon established I didn't qualify for SSI special needs disability because I had more than $2,000 in my accounts, and I didn't qualify for medicare disability because I hadn't paid in enough over the last ten years.  But she said, with someone like me who had a previous strong work record where much had been paid in, they sometimes make exceptions.  There is sometimes consideration????  Wow, just the thought is wonderfully comforting.  Lisa filled out most of the application for me with instructions to fill out the rest online, and made an appointment for me to get a phone call from the local office at 8AM this morning for consideration of my case (saving me from having to actually go to the office- how nice is that?)  Wow, I was thinking this is not what I was expecting at all.  Then today.  Miss Bonilla called and asked "you want to file an application?" and after covering the same information as last week, she told me I didn't qualify because blah blah blah.  I explained what Lisa had told me last week, that I had been advised to ask for special consideration given my circumstances which just garnered me the same answer as before - nope, you don't qualify.   I then asked if she knew what ALS was and she said she'd never heard of it,   But, she did share that if I had end stage renal failure, or if I was a widow they might give me consideration.  Okay, that's great - ALS & end stage renal failure are two things in big print, all over the on-line application that direct you to CALL the office to continue, because these are things to get you fast tracked, but this woman know NOTHING about it?  Was it because I didn't call it Lou Gerigs disease?  Shit.  Obviously, I asked to speak to  supervisor.   She said she'd talk to the supervisor, came back ten minutes later and told me a supervisor would call me back  -  today, she said.  I asked about what time, telling her I things to do, but would rearrange if I knew what time, she said by 10am.  AND?  that's right, NO call all day.  And when I called the local office, I got disconnected four times.  So this is how it doesn't works I guess.  

Yesterday I went to pick up my Rilutec, the only medication approved by the FDA for ALS.  No one knows if it actually does anything, but statistically patients in trial lived 2-3 months more than those not on the drug.  The cost for a one month's supply was $954.00.  You read that right.  I asked the pharmacist was that really the cost for one month and with a steely, unfeeling grin said, yes, that's right this is one month's supply.  No I said, is this THE COST for one month - not a year?  there must be some mistake,  and once again said, with annoyance in her voice as if I were being a pain in the ass about five or ten dollars, again said, yes (with that big horrible phony grin devoid of humanity) there is a one month supply in this bottle and that's the cost.  Okay, it's Duane Reade and they are the worst drug store ever, full of assholes, but I couldn't believe a pharmacist, who presumably knew what this drug was for, would be so callous toward me.  She even said, with that icy smile, as she was walking way - do you have any other questions?  I walked out disgusted, verging on tears and who should open the door for me?  A beautiful radiant nun, who smiled at me.  I smiled back, thanked her and thought, thank you god!!!!!