it didn’t work. Short and simple

April 16, 2014 at 12:33 AM (Uncategorized)

I tried to go home to live in the outside world again. It didn’t work. Getting inti the why or how. is disgusting, so I won’t. I’m now one of those locked away people again. I have so many physical issues that are separate from each other and equally difficult to manage then unless I can get a help pretty much around the clock, going home will be impossible for me. Medicaid will take my funds to assist in my care and my autonomy will be gone. I’m just listing all this because it’s hard.

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The silence that isn’t silence

April 17, 2014 at 2:22 AM (Uncategorized)

I know this will be a lot of scenery chewing. But it’s what I do when I’m angry. Understand although I cannot say this in public so to speak to the staff so that they will care for me. I hate the fact of being in a nursing home. I hate this I despise it, I loathe it, it is vile. it hurts my teeth to smile. Part of me is always screaming to get out.  This time I may never get out.

I have to adjust ,I have to adapt , I have to understand the level of problem. Part of me has always been all wild animal, a sort of growling thing that  has to have my say or I will bite.

But the customer service face has to go on again, and stay on again, in order the proper care come my way. 

So much hatred to hide. So much.

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Pushing a rock uphill

March 30, 2014 at 12:46 AM (Uncategorized)

Now that I’m more aware of a bit of a clock ticking that comes up more, time line is  apparent to me.

A good thing about this is that I know I still have a good deal in the way  of advice and explanation that needs to be said or written. The bad thing is that I know at the other end of this there will be so much left unsaid.

 

The inner conscience, that tries to put the brakes of my chattering, my regrettable high verbal overdrive or the inevitable repetition ofa story heard before … says… “you can’t t fix them all, you can’t help them all, they may have heard this story before why do you do this?”

First I can’t work a real job anymore, so what do I contribute?

Second at this age, middle age, I have some advice to give that is of value either directly or indirectly through story.

Third:  I cannot ‘fix’ the ilness that put me on a time clock.   I cannot fix anyone else’s troubles either.  Because of that, I have a compulsion to give the right advice to as many as I can,  in order that as many as possible benefit. ( after asking permission and couch it in such a way that they don’t burst out with” Yeah well who asked you witch?!”, or something similar.)

then there are days like today when I discovered that someone I value even though I haven’t known them  for a long time  has taken a position that will hasten death rather than listen to what I have to say. It is their business of course, but I admit to disbelieving that they will  not even use available tools  to track their demise. Just to track it.  Not intervene in any way just track it.

They have decided to watch that wrong train go off the tracks and do nothing to stop it.

It is at these  times I get the sense that my life experience means nothing, that any knowledge   I might have is worthless.

That passes,  of course.

but it simply deepens the grooves of that record I keep playing (oh, I mean that downloaded  music I keep rerunning.)

 

 

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Inclusion

March 20, 2014 at 7:52 PM (Uncategorized) (, , , )

so. its high school. My friends and I are sitting around at my house debating what to do that night it was a group of at least four people and probably more.

My best friend at the time came up with an idea, “Let’s  go roller skating!”

I raised my hand and said rather sarcastically, “Hello,  I can’t do that,” and she got this look and burst out laughing, “Oh my gosh, I forgot! I forgot you couldn’t do that!” They hadn’t made me invisible or forgotten I was there, they had simply forgotten my disability for a moment. we went off to do something I could do and I appreciated that very much.

my best friend of those days and I aren’t speaking anymore and that’s a good thing for me for reasons that have nothing to do with this post.but I want to give her credit for having a very involved idea and a very young age that disability is something to be included not excluded.

the only thing I feel bad about looking back to those days since I’m much much older now is this:  Did my group of friends  miss out on things they would have rather done that were more physically involving like sports  or going hiking in a park because I couldn’t do those things? I wonder about that because I didn’t have the self will at the time to ask them did you ever get to do those other things the roller skating the hiking perhaps at a different day and time when I wasn’t around or I wasn’t interested so that you could go do them and not miss out.  I hope so. Because during those days, everyone should get to do the things they want to do.

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I know, I know… You thought I was dead.

March 20, 2014 at 2:09 PM (Uncategorized)

no I’ve been in captivity for the last 5 months and  disinclined to blog  before that. I have lymphedema now as many of you know and one of the things you can get from that he’s a medical condition called cellulitis. It became life threatening. I was rushed to the hospital. Now I’ve got nerve damage and my right leg was not a banana split sundae of well working equipment to begin with. I have had to relearn  sitting up in bed, trying to stand, trying to move back and forth in the bed etc . Here in the rehab hospital I’ve had to make sure that my customer service face is always on and stay nice to people so that I get appropriate care. nice is not my default setting. Its been a mixed bag which I need to wait and write more about when I get out. Hopefully soon. hopefully April 3rd.

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