WHEELINGWOMAN.COM

ugh

2012-05-10T07:37:47Z

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.

ugh

2012-05-10T07:37:45Z

Token

2012-03-24T06:55:00Z

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

2012-02-24T06:47:45Z

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

2012-01-23T07:48:00Z

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 jusy 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

2012-01-01T07:51:00Z

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

2011-11-30T10:36:00Z

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

2011-11-29T09:41:00Z

<a href="http://www.ted.com/talks/caroline_casey_looking_past_limits.html">Watch this video of Caroline Casey</a>
This gal is funny!

Doesn't my happiness matter too?

2011-11-28T09:01:00Z

I think I might talk to the ombudsmen. I now have a Sunday bedtime, 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 hoours.

I need to remember, wheelchairs ARE sexy

2011-11-27T09:14:00Z

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?"

Zumba gold

2011-11-26T07:25:00Z

One of the CNAs in the nursing home was going to start a zumba class, but life got in the way and it didn't happen.

But it can be modified for sitting. Check this video out:
introduction to zumba gold

And

I want to learn this one (love the song);

A cool chair

2011-11-25T08:22:00Z

Watch this!

I am thankful for my wheelchair

2011-11-24T07:41:00Z

This Thankgiving day I feel so thankful for the people, places, and things that help my quality of life.

Today I read a blog from a person with EDS, which is a totally different disability than have, but also similiar. Every person with a disabilty can learn frim anoher person with physical limitations, no matter the disabilty, and I learned from this.

It also resenated with me. When I first got my wheelchair, I could still walk, but walking was hard. I really did not want to use it, but I did when I went to college. And my life changed. I no longer had to worry about walking or using so much energy. It ended up improving my quality of life.

So don't be afraid to use help. It may help your quality of life.

not impaired

2011-11-23T09:41:00Z

I am not judgementally impaired! It got fixed. Thank goodnss!

judgemental impairment

2011-11-22T09:48:00Z

Today I signed a paper about my care plan.

I signed it because I felt presured.. The liscening lady showed up today out of the blue.

But it said in the behvior section I was judgementally impaired. WTH? I was so upset I circled it.

And I told my parents.

They. Are. Pissed.

I feel small.

Tomorrow should be interesting.

drug problems

2011-11-21T09:08:00Z

Today has been interesting. I've been takin a mineral suppliment called slo-magnesium to help with the spasms. I took it in the nursing home, I guess my doctor's order ran out and I was taking it illegally. I need an order for everything here, even vitamins and other OTC's. Yes, it's stupid, but the law .

We're trying to fix it.

Use DrugDigest to look up and learn about any drug.

Advocate

2011-11-20T08:47:00Z

I found this site when a fellow job clubber needed help getting SSDI.

http://advocacyforpatients.org/

I want the 'Know Your Rights' handbook

A reluctant leader

2011-11-19T07:01:00Z

I was having this major problem in the nursing home. I ended up hosting and by default, leading the job club I've been in the last couple of years. At first, I was happy to host job club, to see the boys in job club until about a month later, when the job counselors, the REAL leaders stopped coming.

6 months, a year, two. Nobody called or emailed from the corporation. It was all me. I cleared my schedule every week for our scheduled shooting the breeze, and it was OK, but I felt like I was wasting people's time. And wasting mine. Especially when we lost a guy.

I did not deal with it well. The ending, that is. I tried to end it well. But the boys wouldn’t let me. Try changing a schedule with a person with autism.

So, my mom called the corporation...and argued with the woman in charge...I did get out of it, but I'm not going to job club again.

Oh well.

diapers

2011-11-18T08:54:00Z

One of the things I really hate about the situation I am in is that I have to wear a diaper. Yes, not only is this embarassing, but I feel like a 2 yearold. It's itchy and smelly – not to mention looks like I have a giant package under my clothes, if you know what I mean. And I feel dirty, all the time peeing in your pants sucks. Especially when it leaks and reaches my inner thigh. I'm itching there, andall over the edges of my diaper. And I smell. I don't think I'll find a guy like this.

I think it's time for a catheter.

my internet crapped out

2011-11-17T08:43:00Z

My internet died for a good part of the weekend, but my lj is caught up, so here comes my back-dated entries because I still want to finish out every day in November, so here we go.