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It's atypical neurolognorosis I tell ya...
Yup, that's what it is.
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Welcome to My World
...a place where the witch's toad is pampered...
2nd-Aug-2009 01:00 am - Get Your Own Alzheimer's Ribbon
snark: reality continues to ruin


15th-May-2009 05:47 pm - I'm Back Again
siggy: pyxie


Yeah, I've been gone for far too long. I've been seduced by Second Life (Fuel Burner referred you, if you ever do decide to sign up). I've spent a ton of time learning how to build in 3D. Considering that I've got double vision in one eye from the brain injury as well as perception problems, being able to build something that actually holds together is a feat within itself. Oh yeah, and one of my relatives got married.

Attendance at that wedding was mandatory. Just before leaving for the very expensive hotel (almost 200 bucks for one night), I had my hair cut. Gave my first braid to the Locks of Love. In case you haven't heard about Locks of Love, basically it is an organization that collects lengths of hair to turn into wigs for kids who have lost their hair due to medical baldness. I decided to grow out my hair once in memory of Marie-- my friend Philly David's sister. She had cancer and she died. She was a Quaker. At the meeting hall, there was a little boy there she admired because he was growing his hair out for Locks of Love. He was confident enough not to care about the other kids teasing him for it. So I grew my hair out in honor of Marie.

I felt really good about it when I saw the braid of hair in the bag destined for a kid who really needs it. I've decided to do it again.

More info can be found at: http://www.locksoflove.org/


Bout a month or so ago, I had a "meeting" with the VESID counselor (my fourth in four years) and the job developer. They decided that I want to be an advocate. Getting into any sort of investigative work does not fit in with their limited ability to see beyond my brain injury. During the meeting, I was asked if I would consider full-time advocacy work if I were to make "twenty-five dollars an hour." I recognized this number as being pulled out of a hat (i.e. not based on reality) immediately. I told both of my professional "helpers" that my health and well-being has to come first. Quite frankly, the fatigue is the real killer for me. Lack of imagination is theirs.

Thanks to the friend who came with me who also has a brain injury, I was able to remain calm. That is to say, I was able to refrain from telling these two to feck off. I am the first to admit that I am somewhat obsessed with the "VESID problem."

I was supposed to send off my resume to the job developer. I haven't. I am currrently suffering from lack of belief that this agency which had put "my case" on hold for a year without informing me of that fact (?cuz I refused to get a "return to work" order from my doctor after a routine vertigo attack?) is able to help me. I waited a year for them. They can wait for me. The truth is less glamorous. It took me awhile to remember that my resume is in the computer files.

The job handler to her credit did call me once, leaving a message. Usually she calls from a blocked number and refuses to leave a message, but she counts it as an attempted contact anyways. When I called her back, she asked if I "still want to do advocacy work." Well, no actually, I thought, that is what yous want me to settle for. No matter, I couldn't talk right then anyways. She asked if I want to meet with her. I said, after I send out the resume I will call you. That is how I left it.

Now that I know where the resume is, I can quit tearing the house apart looking for it. I can print the resume out and send it off. I understand there is something there about allowing the professional helpers to help me. I have not been very co-operative. I acknowledge this fully and completely. Yet I also understand that I have to find my own way. As I am able to let go of the problems I've had with VESID, perhaps hope will then be able to return. Yeah, I do feel hopeless.

I feel hopeless because I want to write and I want to write badly. I've had lots of stuff published. Yet there is no current book in my brain. Just a chapter and a vague idea about where to go with it. And a real sense of loss. As in, "I was finally 'making it' career-wise and everything blew apart in a matter of seconds."

So I will send the job developer a resume. I will even meet with her and make nice. I will even listen to the things she suggests, even if they are not things I can do. The last suggestion involved being a home health aide at the agency that is run out of her agency. The biggest problem with that is my back. I can't lift more than ten pounds, period. One of my friends got pushed into doing that, along with being a nursing assistant substitute on call-- and her back is worse than mine. And quite frankly, there are other problems with that line of work. Like I can't do housework for more than ten minutes at a time. I've forgotten how to cook. And I am beyond disorganization. There is that inability to multi-task too that I've been stuck with. The neuropsych told me that my "ability to multi-task has shit the bed and it's not coming back." The shrink explained that I am highly distractible. Uh wow.

The thing is, I am not an advocate. I am an investigator. I've got total attention to detail (in spite of my disorganization and inability to multi-task). I know how to investigate. It's in my blood. I know how to ask questions. And I know how to write up my findings. I know this about myself. If the job market will not bear with an investigator who functions a bit oddly socially and can only work part-time, then I have to come up with some other way to use my investigative skills.

sapphoq healing tbi

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20th-Jan-2009 11:58 pm - If you want to friend me
siggy: pyxie

epic_fail




If you want to friend me, then go ahead and add me. I will then (probability near 100%) add you back. No need to ask. No need to comment. Just do it.

I am who I am.
If you are easily offended by any of the following:

paganism,
bisexuality,
androgyny,
disability culture,
free-thought,
evolution,
radical politics,
folks who disagree,

then I respectfully ask you to use your back button rather than torturing yourself with the state of my soul or other ethereal concept.


My interests range. For some uncensored lists, go to my profiles at insanejournal and/or commiejournal.  I am sapphoq there too.  I have chosen to list interests under my bio at El Jay because of El Jay's past idiotic insistence that "interest in" equals "approval of."
Basically I am obsessed with true crime, frogs, Harry Potter, slash, fanfic, fanart, and my dog.
I also blog excessively in various places, love ice cream and pizza and diet lime coke, got a traumatic brain injury from a car wreck, don't drink or do drugs but don't care if you do.  Oh yes, and I am an Aspergian.
I don't count comments and I do visit the blogs of my blogging buddies regularly.


I despise censorship. What has been happening here at 6A/SUP/Live Journal Inc disgusts me.
Fictional characters are not minors, do not have rights, and cannot be violated. Period.
As a survivor of childhood rape, the idea that a fictional human in a drawing has rights and that there are people sticking up for said rights is beyond stoopid.


I am fed up with the stoopid displayed by El Jay in 2007.  I am not happy that 2008 began with the hasslement of the friends-locked [info]shota community. On some days, I suspect that ultimately I will be banned for whatever made-up reaso offending the corporate sensibilities. Therefore, I urge you who are adding me here to also add me over at http://www.commiejournal.com or at http://www.insanejournal.com so that when the inevitable  happens, we won't lose touch.

I am using my "interests" space at El Jay to list other places where my writing can be found on the web.  I cross-post to both commiejournal and insanejournal.  Those journals are public.  If you do not wish to friend me at El Jay, you can still read what I write here over there.  You can comment as "anonymous" over at my commiejournal.  Those comments (and the ones on my blogspots) are screened because of people who want me to visit their pay-for-pr0n websites and other scammy scummy stuff.   (Trolls, you may re-direct yourselves to my commiejournal or insanejournal if you wish).

All members of the resistance are especially welcome at my pages.

spike




2nd-Jan-2009 11:43 am - MEET THE NEW YEAR 1/2/09
siggy: pyxie

same as the old year? I hope not.
This is the year that I will get unstuck.

2008 already seems far away, a distant memory. Like a receding shoreline pounded by the waves or a receding hairline.

2008 was the year that the brilliant VESID personnel demanded a return-to-work order after a routine vertigo "attack." Again, I ask, WHAT WORK? Since I don't wish to beat that particular dead horse anymore, I shall leave that one dangling.


2008 was also the year that my dad moved three times. He moved from his home with his almost ex-wife #3 to a pullman apartment to our home in the middle of nowhere and then back to his home with his almost ex-wife #3.

I learned a lot of things when my dad was living here for a couple months. Some of those
things I didn't wish to learn and some I did.

My dad succeeded where no one else had since my accident-- I learned how to maintain a
simple house-cleaning schedule. Now I wish I could have had him visit after my accident.
Earlier after my accident rather. At any rate, the house is slowly rising from the plague of
the dust bunnies.

The other things I learned are more of a private nature and thus I will not record them here.


2008 was the year that I discovered Second Life (tm to Linden Labs). Second Life is total eye candy to someone like me who loves visual effects and animations. Over there I've been learning a bit of simple scripting and some 3D building. That is the part that makes Second Life different from blogging.


My goals for 2009:
to remain abstinent as defined in the program of Narcotics Anonymous.
to complete my book and submit it.
to remain married and faithful.
to increase our financial stability as a couple and mine as me.
to continue to monitor my health proactively.
to blog on any of the blogger blogs twice a week and on the journal blogs once a week.
to address the things that I allow to keep me stuck.

I hope for everyone a well new year. And if not a well one, then at least a weller one.

sapphoq healing tbi

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24th-Dec-2008 07:40 pm - Happy Christmas 12/24/08
siggy: pyxie

Dear People,

I am sorry I haven't been here once again.
I fell several weeks ago while walking-- landed flat on my back-- and fell again three days after that.  Actually I fainted after a shower.  I fell on my right side but fortunately had protected my head with my arm.

My back, which wasn't great due to the motor vehicle accident I'd been in that also gave me the traumatic brain injury, is now a spasming mess on the right side.  Can't hardly bend to the right, can't move the right arm out to reach all that much, can't get in or out of a chair without extreme pain and difficulty.

Two trips to the doc resulted in a script for physical therapy which I am glad to say I will be starting next week.  The muscle spasms in my back aren't bad as long as I don't breathe, shift positions, or move in any way.  Traction is beginning to look like something desirable.

I will be back when I can.  Meanwhile:

1).  Happy Christmas and happy everything else too,
2).  I hope that the president-elect is able to help the u.s.a. out of the mess we are in but I sorta think we are screwed anyways,
3).  I saw two pileated woodpeckers the other day pecking on a telephone pole while they were hanging upside down.  Very beautiful.

Be well my friends.  And if you can't be well, then be weller.

spike

30th-Sep-2008 01:15 pm - Two Brain-Damaged People
siggy: pyxie

Dad has come to live with us. He has some dementia and some aphasia. So now there are two brain-damaged people in the house-- me, and Dad.

Now I know that the official words for my brain damage is "t.b.i." or "traumatic brain injury." The reality is that traumatic brain injury equals brain damage. My brain damage was acquired after the age of 21 in a motor vehicle accident. It is brain damage nonetheless. One physical therapist from Sunnyview Hospital in Schenectady tried to tell me that "brain damage" sounds like one is "damaged" somehow. Yes, my brain is damaged. Why not just call it what it is?

Dad has some restlessness and is wanting to do housework and fix up the house when he is not sleeping in front of the television set. Last week, we decided to stain/waterproof the back deck. First we had to locate the two buckets of stain and the brushes. That wasn't any problem as my friend Ed had given us those things and they were sitting by the back door. Then we had to wait for a sunny day. That happened.

It was a very sunny day. And hot, considering that we live next door to Alaska. So Dad insisted that we wear long-sleeved shirts. The stain getting on our skin would ?eat it? stain it? At any rate, on went the hot shirts. Then there are the latex gloves-- same reason. We started working out of one bucket but then that went to, "Here's another bucket spike. You use your own."

There was lots of staining, doing and redoing. I redid some of Dad's area and he redid some of mine. Two half-gallons were left when we got done. Between us, the stained deck was definitely personalized. There are some drips and dots from my work. And some heavier stained areas from Dad's work. With two brain-damaged people staining a deck, the results will be interesting. A guarantee.

Yesterday, Dad decided that we should put together a clothes rack with vinyl bag hooked onto it for the clothes he has that he no longer wears. This particular clothes rack/vinyl bag thing was manufactured in mainland China. And I swear whoever wrote the instructions hit the "from mandarin to english" button on babelfish. To complicate things further, Dad dumped all of the numbered poles out of their respective bags. The first attempt came out with two longer sides and two shorter sides. There was a break then during which I hoped in futility that Dad would forget about this particular tortorous clothes rack/vinyl bag thing. Didn't happen.

After some "Divorce Court" on teevee, we went back upstairs for a second go 'round. This time we managed to get the vinyl bag installed but then the poles kept pulling out of their holes. And so this clothes rack/vinyl bag thing stands loosely in a corner looking more like a modern art structure than anything remotely functional.

Because of my difficulties with multi-tasking, perhaps I would have had a shot at putting the thing together if left alone in a cave far away from human civilization. No chance of success yesterday. Dad kept up a running commentary as we were working. And between my t.b.i.-related perception problems and Dad's dementia-related perception problems, shoving poles into holes at flush 90 degree angles was not a task destined for fantastic results. Husband said he will "look at it" today.

I think there is something to be said for joining a nudist colony and forgetting about clothes and things like that.

sapphoq healing tbi

3rd-Sep-2008 10:27 pm - Howdy
siggy: pyxie
Dad moved in and things have been busy.  I will update as soon as I can and make the reading rounds too.  spike
9th-Aug-2008 11:50 pm - Kisekileia's Meme
siggy: pyxie
[info]kisekileia made this meme:

it's cool )
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