WHEELINGWOMAN.COM

trapped

Sarah — Tue, 04 Dec 2012 10:23:59 GMT

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.

me

Sarah — Wed, 24 Oct 2012 06:52:36 GMT

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

Sarah — Mon, 24 Sep 2012 06:56:57 GMT

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!

belief

Sarah — Fri, 24 Aug 2012 06:59:20 GMT

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?

Sarah — Fri, 17 Aug 2012 05:31:27 GMT

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?

Sarah — Wed, 15 Aug 2012 04:12:45 GMT

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

Wheeling Woman — Sun, 05 Aug 2012 09:31:47 GMT

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.

screwed

Wheeling Woman — Sat, 04 Aug 2012 06:58:09 GMT

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

Sarah — Wed, 04 Jul 2012 06:23:04 GMT

This is my 3^rd 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

Sarah — Sat, 23 Jun 2012 07:58:00 GMT

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?

losing weight

Sarah — Wed, 30 May 2012 08:41:46 GMT

I gained a lot of weight during my stint in the nursing home.

My thyroid went out. I stopped using my legs to transfer (or to do anything). And I started eating a lot because I was so bored.

All this equals to a huge weight gain.

I started physical therapy about a month ago and started moving my legs again (Yay for electrical stimulation!)

This week I take the plunge and try to use my slide board to transfer. My dream is to transfer into cars again. And maybe get on the toilet one day.

I am a little nervous about transferring, especially with all my extra weight. I brought this up with my physical therapist last week, and she and I agreed to lose weight. I think I already lost some by cutting out sweets and doing my leg exercises

.I don't know how much I weigh. It is hard to weigh yourself in a wheelchair. Maybe I'll sneak back to the home and weigh myself!

I need to drink more water, which should make the whole diaper thing even more enjoyable. And I am thinking of joining this site, which a friend of mine just led me too.

I want to transfer again so badly. It would give me so much more freedom and make my life that much more easier!

That's already my motivation!

ugh

Sarah — Thu, 10 May 2012 07:37:47 GMT

Just read this in a disability blog:

"The sad thing is I'm getting so used to being treated like I'm scum that I'm starting to just believe it and not care anymore.:"

Me too. Being disabled sucks. Oh, and we are scum.

Token

Sarah — Sat, 24 Mar 2012 06:55:00 GMT

I've also been neglecting this blog...this month has just been filled with so many feelings...good, bad, ugly. I haven't felt like writing. I need to write more. Get all these darn thoughts out of my head!

This entry is about something that happened at the beginning of the month.

My church had a night meeting with the women of my congregation.

And I was asked to sing with 10 or so other women for the program. It was fun, but --

I'm just so different from the others. Not only was I not married. I have no kids. And I'm in a wheelchair. None of them are related -- well, maybe marriage and kids, but my chair isn't related to my marriage status...my health on the other hand....it's hard to find a husband in the nursing home...strike that....it's hard to find the husband I want at the nursing home...

i don' t know...sometimes, I just feel like the token.

Why do I have to feel like I'm representing a group and not just me?

I haven't gone anywhere

Sarah — Fri, 24 Feb 2012 06:47:45 GMT

Historically public assistance in exchange for enforced poverty and the absence of freedom is a bad deal, one that fails all parties to the arrangement, people with disabilities, their families, and the American people. --2004 report to pres. about intellectual disabilities(I argue physical disabilities as well)

Been busy trying to catch up on life..my email inbox backup is almost gone. I've been able to write people and watch various webcasts. That's where the quote above came from.

It just reminds me of how horrible living here makes me. How trapped I feel. How baby-sat I feel. I have so much life to be lived. I feel prematurely put out to pasture.

risk

Sarah — Mon, 23 Jan 2012 07:48:00 GMT

I know it's been awhile. This blog is always on my mind. I have tons of links annd stuff to post, but it's been a challenge to unjumble my thoughts and just sit down and write.

Moving and all the compromise and changes that go with it have been hard. The peeing thing is still a problem. I'm going to talk to my neurologist next week and get his opinion about living on my own. And about going back to PT Elite

I wish my family supported me more in my quest to be independent, but I'm going to do it anyway.

Progress

Sarah — Sun, 01 Jan 2012 07:51:00 GMT

Well, out of the nursing home, but not where I want to be yet....baby steps..

What will go on in 2012? I don't know, but --

BRING IT ON!

Think Beyond the Label

Sarah — Wed, 30 Nov 2011 10:36:00 GMT

Disabled and looking for a job? That is not yet me, but I've seen a lot of TV ads for Think Beyon the Label and this campaign could help disabled people get hired.

Too bad the economy sucks right now, and even able-bodied people can't get work.

Looking Past Limits

Sarah — Tue, 29 Nov 2011 09:41:00 GMT

Watch this video of Caroline Casey
This gal is funny!

Doesn't my happiness matter too?

Sarah — Mon, 28 Nov 2011 09:01:00 GMT

I think I might talk to the ombudsmen. I now have a Sunday bedtime; I was made to feel like 6 o'clock is too late to ever go see a friend or have someone visit. My home teachers came by Sunday at 6 pm, and man, did my caregiver freak about how late it was. They left at a quarter to 7. That was late? Obiously, there's a communication problem I don't know, but I resent my restricted hours.

EDIT: It's all good. I'm not restricted...just a misunderstanding.

I need to remember, wheelchairs ARE sexy

Sarah — Sun, 27 Nov 2011 09:14:00 GMT

I have never felt desirable with the chair. I don't feel worthy of love sometimes.

My dad told me recently that no one would give up their entire life for me.

I guess I am -- to society, but I refuse to believe I'm not worth anybody's sacrifice. Everybody in a relationship gives and recieves sacrifices. Why am I not worthy?

Read this blog post.

"Disabled sexuality is virtually erased in our society. People with disabilities are, at best, considered nonsexual, entirely lacking in sexual identity. At worst, we are seen as perverts merely for having sexual desires. And we are, above all, undesirable. The aesthetic of my power chair reflects this–why bother make something sexy when the person using it isn’t going to be having sex?"