Monday, September 22, 2014

"Extremely severe pain"

I have not made up my mind how long I'm willing to live like this.  Because if my natural life span I were to live to b 80; then that means for the next 29 years I have to wake up every single morning with excruciating pain.

I have asked you this many times, but I just can't get a dialogue going.  How long could you tolerate 24/7 severe pain?

"What's the answer?/stood up"

Stood up in my mind is much more then a person not physically showing for a "date" 

As I told you the other night, I shoed up for monthly potluck  nobody was there.  It was in a clubhouse, so I went to the folks fb site, and found someone who sent me a message stating that the group cancelled 30 MINUTES before the start of the potluck.

This is the 3rd event I have tried to do with them, where nobody was there.  Why didn't I get the message? 2 reasons, I don't own a home computer, and even if I did, there would b no reason for me to check 1/2 hour before to see if it had been cancelled.

Why was it cancelled, the weather was absolutely perfect.  I wasted the time of grocery shopping, buying food driving there, then waiting an hour to find out what had happened.  Well, the wife and husband who run it: the wife said: we cancelled so as to increase the chances more people will come to our even the next day!

The husband on the other hand stated that it was cancelled because not enough folks rsvp'ed!  (10 folks rsvped including me.


I can prove based on my journals that in a years period it is not uncommon for me to get stood up at least 200 x every year.

Tonight, I drove to campus, found a place to park, walked across campus to the building where Australian authors would b speaking.  AAAAAAGGGGGGHHHHH.  I CAREFULLY followed the instructions given by the newspaper and not a soul was there.  STOOD UP!  The paper gave the wrong location.

The authors had lived in Melbourne, I wanted to make a face to face connection and tell about my writing as well; but by the time I got to the correct location, I only got to hear 7 minutes of the readings.

I fully understand people who never want to leave their house.


Ray of light

I caught the last 2 hours of the INTERNATIONAL DAY OF PEACE FESTIVAL made many wonderful connections and felt really really happy.........................................

Saturday, September 20, 2014

"Bleep still happens and it happens aplenty"

If you look at these things also as being "stood up" then I think folks stand me up more then they actually show up!

I went to photo club on Thursday but nobody mentioned in advance that they are doing a nighttime photo shoot, and I don't have the money at this time for a cam. that good.  leave and let them go

then, I thought, well, since that didn't work out, ill pop by for the last 1/2 hour of support group to say hi to maria.  I go and the entire church is locked up

leave there and go to the clubhouse, because atheist church is supposed to be meeting.  nobody shows

today, I buy food go to a potluck and there is nobody there.............................................

I think if miserable is your set point then this shit doesn't really matter all that much

On another note the pain has been unreal, where I can barely walk and the meds are like taking tic tac.  in that regard I guess it makes sense to stay home as much as possible.

today (and I've been trying tons of new things, tons this summer with the exception of travel which I can't afford) I went to another writing group today and it was 3 hours long.  how enriching it would have been if the teacher let us read our work out loud.  she has us do about 45 minutes of writing in our book and we don't get to share any of our thoughts.

I asked one other person and he felt the same way-if you can't share what your writing then y bother.

well, I reckon it's time to go home and get dinner

Monday, September 15, 2014

"I know that you simply can't relate to me"

In the last couple of months I've been around more in the way of financially comfortable white and and or native American.  (We only have about 2% black in this community of Mountain Town)

I've also been in a lot of group situations.  The last 20 years in a nutshell, no family, crushing poverty, homelessness, lots of violent crime and a great deal of black on white, reverse racism.

So, unless I'm in one on one situations, I feel for the most part there isn't much point in saying ANYTHING in a group situation because you probably can't relate.

I was at an event today where folks discussed trails and walking in Mountain Town.  I was the only one without a car.  I talked about how it's deadly to walk here because folks speed on the sidewalks and walkways (bikes) and expect peds to get out of the way.

When I said this, there was silence, because nobody else had experienced being without a car.

It is still true that I find more folks who I can relate to by watching forensic files, or investigation discovery they I can by leaving the house!

Friday, September 12, 2014

The Girl in the Box

saw this survivor on the show "surviving evil" that is one of the shows that would be a good fit for me to tell my own story.  there are 2 or 3 others also that hopefully will take my own story.  I live to tell.

"looking back at 9/17/2004"

I ran into Tuesday.  She graduated in my dept with me in 93.  (from purdue) I told her that I am homeless.  She asked me if I would like to stay with her.  She has ALS/ I think it was, lou gehrigs disease.  She has no real use of her arms or legs.  Her mother took some drug during pregnancy and her limbs didn't develop.  ;(

Here is an entry from that period of my life

Day 3, HOMELESS homeless

Definition-Dwelling wherever there is shelter because you have zero money for rent.  I'm sleeping 2 to  hours a night, so I haven't been able to write as often.  But I remember boy do I remember what is was like to live with Tuesday.


Tuesday had a Barbie Doll and I love lucy doll collection.  This gives me a great deal to think about.  The Barbie Dolls represent everything that she will never be in THIS life.

The American ideal for beauty.  Tall, blonde, thin, rich, good looking.  She has a b/f who she is monogamous with and who lives with her.  He has limbs that work.  It is so sad to me that she can not and never did play with those dolls.  Can't pet her cat Molly.  It brings me deep sadness to see what she goes through.  That's part of why I can't sleep.  I just laid there thinking:

she will never:

scratch her own itch
wipe herself
brush her hair
feed herself
take a walk
give a hug

Before moving in with Tuesday, I always resolved that I would never ever

Bathe an adult
diaper and adult
or toilet and adult

But it was such a great act of love that her and Hank let me stay in their very crowded and cluttered apt!  I would do the world for her.  I am letting hank train me on how he cares for her.  Initially I didn't care for him but now I've changed my mind.  How can I dislike someone who does what he does for her?  Shes the brain and he's the brawn she says! 

She actually seems to enjoy her life.  What an inspiration.

"Nearly impossible but fairly busy"

So, it's nearly impossible to get out of bed.  I'll bet that few middle class people would tolerate this situation.  Got into bed at 730 p.m. due to severe sleep deprivation.  Constant banging from the neighbor.  She is a chian smoker.  So, every time I'd drift off I'd be woken either by banging or by smoke.

I spray with Lysol , burn incense, turn on a.c. open windows.

It's a lot of obstacles but even if I do move there is no guarantee the same thing won't happen.

I've tried 3 different support groups but probably won't return to any of them.  Any time groups are peer led they tend to b quite unprofessional.  Then neediest and or most domineering talk for  most of the meetings.  I think all you can hope for is to meet one or two folks that you have some things in common with and exchangephone numbers.

Today, I showed up at a free class that I took in 2011.  Chronic disease management.  I was disappointed about who is teaching it this semester.  She read out loud from her notes for the entire 2 hour class!  There was a break and I really hit it off with one of the attendees.

I have to decide whether or not to go back, because I like some of the folks in attendance.  I decided that I can't tolerate listening to her read out loud largely because she reads like a 10 year old.

Conversely,she is having someone take her place next week, so I will sho.

There is an even in an hour which the organized asked us to register online.  I didn't want the hassle, so I made some 5 calls trying to register over the phone with no luck.  So, I did try to register on line and had the librarian look at the site and she had no idea how to get registered.

I finally got through to the organized and she said it's sold out (well free but full!) and that I shoud just come and see if there are enough no shows to come.  She is an author speaking about her memoir.


The situation with the pain is still I consider very serious, I still need to find a neurologist and a rheum. so I can find out how far the arthritis and nerve damage have progressed.