I feel just like Brad in this  story . I want to make a contribution, but I feel trapped. I can keep my medicaid, because Washington state has a medicaid buy-in option, but my living system traps me.


I'm stuck in this updating once a month thing. I know I need to be writing in here more...trying to get an actual reader or 2. And writing is so cathartic for me. I need to do it.
I feel stuck.

I just have to  get unstuck somehow. I know how. I just have to st down and get working.

Or stay stuck.

Suddenly, I got bad at updating

Life has been crazy busy.

Full of dead kindles. Renewed relationships. Books. Twitter. Laxitives. A Trip to WSU-Vancouver and the DMV.

I sniff some new blog posts soon!


I WILL transfer again. I don't get why my mother doesn't see why I am able (with more strengthing and practice). She saw me do it in June at PT. Yes, it was hard and I needed help but I moved from the chair to the table without hittting the ground. I wish people would stop putting limitations on me. That's MY job. It pisses me off so much!

What do you do in an emergency when you're stuck in bed?

I  was so scared. My caregiver lay on the ground, a victim of a seizure, caused by low blood sugar. I was on the bed, my wheelchair gone to the wheelchair shop to get fixed, but it didn't, which is another thing altogether.

So, here I was, stuck in bed, my cell across the room on the rolling table usually across my bed. So, I started yelling and banging on the wall. Nothing.

I said a quick prayer.

And she started coming to, but she said nothing as she stood up on unsteady legs. She kept stumbling around the room. I kept trying to encourage her to sit, but she still remained silent
. And left the room.

Now I was frantic. The other ladies were out there. What if she stumbled into one of them? I started yelling and banging frantically again.

The man of the house came in with the silent cargiver behind him. "She had a seizure!" I said.

"She's right there. She's fine."

"No. She just had a seizure."

"She's right there. She's fine."

"She's not well," I said in frustration.

Luckily for me, she chose that minute to almost fall.

And that's when, ladies and gentlemen, I finally got believed.

No wonder I don't beliieve in myself. No one I live with belieeves in me. My family doesn't believe in me. My friends that believe in me live far away.

I feel so alone.

When can I move out?

They have a new caregiver, now I am forced to bed at 7.
And forced to hear that I'm not normal.

At least Hannah called today. I love Hannah.

Oscar Pistorius, my fave non-American Olympian

Pistorius ran the 400 meter track qualifier race yesterday in the Olympics. Later today he runs the final. for his country, South Africa. Pistorius is an amputee, and runs on cool legs -- that probably cost a fortune. He has fought hard to compete in the Olympics, but he made it against the odds. I don't know if I like the way NBC portrayed him as poot cripple that doesn't have a chance, but I think its cool he is good enough to compete with able bodied people. Maybe this will start to change people's attitudes about disability. This guy is not a victim. He is strong.                                             


I think I'm screwed when it comes to getting adult child social security. It will take away some money from my mom and I can't do that. Especially if I move out with it, which WILL piss my parents off.

I just have to find another way.

Dependance day -- part 3

This is my 3rd annual dependence day. I went into the hospital with my spasms 3 years ago. Things are getting better...slowly. I am out of the nursing home. My ankles are eons better. My surgery scars are almost gone...I am stuck wearing these ugly braces, but I have sandals now though. Yay! My neurologist saved my life, and let me have regular botox injections...finally.

Now, I am working on getting my legs to move again. I have an e-stem machine that I use and I am working on a grant with an FA charity to get more therapy. I really want to transfer again. I want to get in a car so bad, and maybe even get onto a toilet again.

Nothing is going as fast as I want it to be – a combo of stupid medicaid and a stupid doctor...and some stupid Tts at the nursing home who filled my mind full of crap, telling me standing wouldn't improve my life functions *******!?#$ I hate them for giving me sub-par care, while they flit away off to Hawaii or whatever and tell me I'm depressed . (Heck yeah, I'm depressed, you don't do your jobs and let my legs shrink down to nothing when I beg you to stand me up...ugh!)

I still have dreams and they don't include me being here in this home. I want to continue my education and maybe freelance some. I want to teach at a university I only have felt comfortable and whole in college, writing and learning. I'm sick of acting like my life is over. Because, it's not!

Disability is about acceptance

One of my facebook friends, a fellow high school] newspaper staffer, and I have become better friends now through our diseases. We don't share diagnoses.  (I have a wheelchair and she's not so lucky although it seems some days she could use one.)

But we find strength in one another.

Today, I gave this comment to her, " I think we all may have different experiences with different disabilities. But it makes us all valid and more alike than we'll ever know. My disability has given me so much more compassion towards others struggling with their bodies. Big or little. We are all in the same boat"

This is one of the reasons I don't out my disability much, especially here, or even in real life. I don't want it to put up walls between me and anybody with any disability.

But does it build walls?

I am starting feel more and more that people should know.

I want to help raise awareness and support for others with my disease, which is rare.
Should I? Thoughts?


April 2014

Recent Posts

  1. trapped
    Tuesday, December 04, 2012
  2. me
    Tuesday, October 23, 2012
  3. Suddenly, I got bad at updating
    Sunday, September 23, 2012
  4. belief
    Thursday, August 23, 2012
  5. What do you do in an emergency when you're stuck in bed?
    Thursday, August 16, 2012
  6. When can I move out?
    Tuesday, August 14, 2012
  7. Oscar Pistorius, my fave non-American Olympian
    Sunday, August 05, 2012
  8. screwed
    Friday, August 03, 2012
  9. Dependance day -- part 3
    Tuesday, July 03, 2012
  10. Disability is about acceptance
    Saturday, June 23, 2012


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