Amber's Abode

@#@#! (Insert your favorite strong angry expletive)

Well, this is probably going to be labeled psychopathic rant, so be forewarned

Wednesday night, I made a third-place finish in the second round poker game.  I accepted the congratulations.  I hit the button to turn on my joystick controller.  It would not turn on.  The more mechanically inclined people around me discovered a short in the cord leading to the joystick.  When they wiggled it, I would gain power for a few seconds, then it was gone again.  Nobody around me understood why sheer panic ensued in me.  I tried to tell them it's like somebody breaking both of your legs, but nobody got it.  They all told me the calm down, though no one wanted really to help me home.

I somehow made it to the bus stop and explained the situation to the bus driver, who kindly assured me that he would make sure I got home one way or the other.  So when we ended up at the final stop, from which my building is another five blocks to walk because there is no train running to the final stop that late at night, the driver put my chair in manual mode and got ready to push me home.  He called his dispatch, just to let them know what he was doing.  The dispatch transmitted back that he was not allowed to leave his bus to help me get home, under pain of losing his job if he did.  We both thought that was pretty crappy, but the bus people called a cab.  When she finally arrived, she was one of those super size girls, and she took one look at my chair and told me she refused to push it.  She then called the cops to help her load and unload my chair, but she only waited five minutes for them to show up.  After that, she muttered something about losing money, managed a very fake sounding apology, and left.  Mr.  bus driver and I sat on the bus for a total of an hour and a half waiting for the police, all the while being bothered by dispatch telling him to unload me and leave.  We were both very very angry by the time the cops managed to show up, so the bus driver drove his bus to right across from my building and the cops pushed my chair into the building at around three in the morning.

The attendants here were a little angry that I had not contacted them, but I had no way to.  They're all deaf and would not have heard the phone ring.  And of course, when I woke up the next morning, there was a rumor floating around that I had been arrested, because I was escorted home by police.

Also when I woke up the next morning, yesterday, the bed was soaked because the catheter was clogged.  Again.  So I dutifully called my home health nurse, because they won't do anything catheter related here, and was told they would call the front desk when someone was coming out.  That was nine in the morning.  In the meantime, someone came to fix just the seat on my chair, not anything to do with the electronics.  But he stayed here for awhile and heard my phone calls to the company that is supposed to do something about the electronics.  They said that they were really sorry, but my insurance did not pay for chair loans, so if they came to pick up my chair, I could be without any way of getting around, stuck in bed, for two weeks.  I started sobbing;, I could not help myself.  After all I have already been through, I don't need that.

Fortunately, the guy named Tim, who was working on my chair and heard the conversation, agreed.  He said he would take the chair just overnight, find out what was wrong, and either fix it or bring me a loan by today, the next day.

Meanwhile, it had gotten to be two o'clock in the afternoon with no callback from home health.  So I called again to ask what was going on.  They said they called the front desk a long time back to tell them that they had no one to send out to me and I should go to the ER.  Well, not only did this make me angry because it defeats the whole purpose of home health, but nobody gave me the message.  So I had no choice but to call 911.  They came nonemergency, and took me to the ER in the hospital called Providence, where my new urologist works.  Of course, he was not there yesterday.

They eventually changed my catheter.  But they wouldn't listen to me really about the other weirdness, like the extreme fatigue.  And they were really rough with the actual change, because they thought I was paralyzed and couldn't feel it.  Apparently, reading the chart slipped their minds.  But they did feed me dinner while I was waiting for my return ride.

And when I got home, my chair was waiting for me, with a loan for a joystick, because my joystick is bad, according to Tim via phone message.

And so, I thank God for Angels like that bus driver and Tim.  But the rant part comes because I'm realizing that just because the situations are resolved for the moment, I'm still angry, very angry, at some of the concepts behind them.  Like why isn't the bus company allowed to help stranded passengers, especially disabled ones, and why the hell are they threatened with losing their job if they do?  Isn't that their job in the first place?  And why the insert long beep doesn't my insurance cover wheelchair loans?  How could anyone possibly think it's okay to leave someone stranded in bed for days or weeks?  I just don't understand.  I'm trying to but I really can't.  Would they allow me to come and break their legs and tell them they could not use crutches?  I don't think so.

And another thing is that I'm finding that I'm feeling angry more and more often lately, but really don't have anything to do with it, anywhere productive to put it.  So it just boils my blood, which is not very good.  Panic attacks happen when there is nowhere left inside me to safely hide it.  And right now, I have zero physical energy to send it out of me with.  Does anyone have any suggestions, preferably practical ones about what prayers, meditations, or other means of dissipation or release work for you?  Praying doesn't seem to be helping very much lately.  It feel like I'm just muttering at the ceiling.  So I'm very open to any help.

Thank you all very much for listening and caring.

More Posts by Amber