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!!!!!

Is it time for champagne?

When my biggest health concern was diabetes I would log onto the internet where there is a huge community of people with Type 1 diabetes.  It brought me comfort to read what others had to say, to take advice and to share experiences living with this stupid disease.  I didn't feel so lonely in the diabetes world.   I felt like there were people out there that understood, that had the same experiences I had with doctors and insulin reactions and eyesight issues and the fears about how high blood sugar would destroy all the organs.  I liked knowing I wasn't alone in that world.  The online community was the biggest revolution for me since blood sugar checking equipment and the insulin pump.

But today I am experiencing great bouts of existential turmoil.  Even though my friends and family are more than supportive, beyond fantastic, dearer than I could ever have expected, I feel very much alone.   I feel myself slipping, slowly, quietly, headed somewhere I don't want to go - someplace without much hope.  (Seriously, I don't need anyone to try and cheer me up - that's not what's called for in times like this.)  The ALS online community is very different than the one focussed on diabetes.  I go back to that community where I was so comfortable (although I wouldn't wish anyone to be a part of that either) and I think - my old friends have no idea how easy they have it.  This new community is filled with stories of people, bravely soldering on as they have vents and feeding tubes put in, as they are moved in wheelchairs and hoyer lifts, as they rely on others for everything.  They (we?)  are somewhere on the continuum of becoming immobilized, locked in - with minds that are still fully functional and aware.  It is not kind, it is not gentle.  There is no solution except the final one.  Is there some level in Dante's inferno for us?  BUT,  here's the weird thing - so many people in my new community focus primarily on the good parts in life - the connections with people with whom they share love and the other angels that help.   So I know my body is poised to give out on me, to fail me and betray me on a level never before imagined - but I also know my body will pass and the love I feel will always be there.  There is comfort and wisdom in this.  I've known this all along, but now it's the only thing I have left that I can count on.  I'm in unchartered territory.  We all are, it's just I have a front row seat.

I drink champagne when I'm happy, I drink champagne when I'm sad.  I don't know which I am right now, but it might be time to pull out that fine vintage bottle right now (and leave the cheap stuff for those who are spared this existential crap!)  Spread a little love today.  You will be glad you did!