WHEELINGWOMAN.COM

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 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

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

<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?

Sarah — Mon, 28 Nov 2011 09:01:00 GMT

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

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?"

Zumba gold

Sarah — Sat, 26 Nov 2011 07:25:00 GMT

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

Sarah — Fri, 25 Nov 2011 08:22:00 GMT

Watch this!

I am thankful for my wheelchair

Sarah — Thu, 24 Nov 2011 07:41:00 GMT

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

Wheeling Woman — Wed, 23 Nov 2011 09:41:00 GMT

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

judgemental impairment

Wheeling Woman — Tue, 22 Nov 2011 09:48:00 GMT

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

Wheeling Woman — Mon, 21 Nov 2011 09:08:00 GMT

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

Wheeling Woman — Sun, 20 Nov 2011 08:47:00 GMT

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

Sarah — Sat, 19 Nov 2011 07:01:00 GMT

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

Sarah — Fri, 18 Nov 2011 08:54:00 GMT

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

Sarah — Thu, 17 Nov 2011 08:43:00 GMT

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.

second class citizen

Sarah — Wed, 16 Nov 2011 07:29:00 GMT

Well, my gynecologist trip was a flop. They wouldn't lift me. My mom even called to warn them I was coming, and they said they would help.

Now, I'm a virgin. Personal choice. Doesn't mean I can't have sex. Or will have sex one day.

Yet, she refused to check me.

And I just sat there, holding back tears of anger, letting her de-sexualize me and deny me medical care, which is against the law.

I'm so mad at the doctor and at myself for letting people treat me as a second class citizen.

How can I change that?

no words

Sarah — Tue, 15 Nov 2011 08:36:00 GMT

I am just angry.

gyno

Sarah — Mon, 14 Nov 2011 08:02:00 GMT

Tomorrow is take 2 for the gyno. Missed cvan. MRI I got was clean nerve- wise, but showed a pesky cyst on my ovary.

Haven't been to a gyno in years. Yep,medicaid doesn't cover it.

And I hate being carried onto high tables.

I hate not being able to transfer

I take drugs.

Sarah — Mon, 14 Nov 2011 06:48:00 GMT

Yes, everyone, I am a druggie.

I don't really like drugs, but once the spasms got out of control, I had no choice. I had to control them.

Or cut off my legs.

At first, I was devestated. So many drugs. I was in this fog. I couldn't think. I couldn;t even. I hated it.

I would try to skip my drugs in the early, days, but my legs would stiffen up or even start spasming. I've since lessened my drugs, but I still use them to control my spasms.

Some people would contend that I am a bad person because of that.

I don't think so. This isn't about drugs.

Its about treatment. Its about the quality nof my life.