oh wow.

Feb. 5th, 2006 08:40 pm
dianadragonfly: (Default)
Oh.
My.
God.
Remember her? http://dianadragonfly.livejournal.com/277799.html?nc=2

Health Care

Girl's Recovery Stirs End-of-Life Debate


Listen to this story... by





Weekend Edition - Saturday, February 4, 2006 ยท
An 11-year-old Massachusetts girl who was nearly taken off life support
after a savage beating shows signs of recovery. The case raises
questions about her medical team's conclusion that she could not
survive.




Oh god, I'm so happy.
Someone email this to Michael Schiavo.

I want to adopt this little girl.
dianadragonfly: (Default)
Can't shake this.
I'm trying. It's not as if I go "oh, it February -- must be depressed."
I go -- "Man, I feel different. It's really bad. What's wrong?" Then I remember, oh yeah, it's Feb.

*sigh*
A friend has a birthday party and I don't want to go.
I want to wallow.
no, I don't want to wallow. I want to do anything and everything possible not to feel like this, but I don't want to have to do anything.

We had 8 hours of training again today. I have never wanted to stab myself in the eye with my own pen so badly. I can't sit in a room for 8 hours anymore.

The leader knows my Mariah, the first kid I worked with. I mentioned her, and she said "I was her very first foster mommy. I was there when __________*insert a detail of horrible abuse here that identifies her by the physical markings it left*" The woman said she wanted to keep her. I felt ill. My Mariah could have been "saved" then. Had she gotten more than 2 hours of staffing per day, Maria wouldn't be in the condition she was in when I saw her.
One day, someone needs to answer for what was done to her. What happened is that as M. grew, she was harder and harder to take care of and bounced from home to home to home. People say over and over that she is the most severely autistic person that they have ever known. Add abuse and instability -- man --
I've always seen this as a "shit happens" case. But to know that she could have been happy and healthy and living with my supervisor had she had just a little more support -- that agency is evil. They justify it, say that take kids no one else will take, like the dual diagnosis kids, etc. No one else CAN take these kids once they have been through this agency.
Community and home based waiver is failing.
Institutions aren't the answer.
Arkansas has something like 16000 people in their institutions that costs the state 600-900 dollars a day.Waiver caps out at $160 a day. And they wonder why there is no staff for waiver. Our institutions (illegal under Olmsted!) suck our resources.

Driving home, I was just so angry... my little guy screaming all night and smearing shit because his tooth hurts.
The boys in the detention center, snoring and screaming in their sleep. My Mariah, locked in her house, her plan calling for institutionalization and 23 hour a day restraints. My Kayla, shipped away. My Angela, in her home in my hometown, wondering where her mommy is. I can't do it sometimes, I can't be part of this system any more...
When the mom of this one girl I work with talks on and on about how hard she has it, I just want to cry "you have no idea."

I can't take this on for them anymore.
But they can't take it on themselves....
But I'm tired and I'm frustrated and I'm sick of caring. Why does it matter if the 12 year old learns to make his bed if his next staff doesn't care? Why did I work so hard on toilet training Angela if she went back to diapers when I left? I'm about to give up.
dianadragonfly: (Default)
Oh dear god, I thank thee for Steak and Shake sippable sundaes.

I was feeling bleh again today. Like really bleh -- dead bleh -- sleep cause I don't want to be awake bleh. But I finally got myself up around 9 ish and ran by a friend's house. i was supposed to show up earlier to watch a movie, but I didn't feel like it. Anyway, it was at the house of the mom of the boy with autism who shit all over yesterday.

He has a tooth knocked out and they are waiting for medicaid to fix it. Meanwhile, he's in real pain. Hence the hair pulling and shit smearing. He was okay tonight but then woke up screaming and biting his arm. Poor baby. I came in and he got ahold of me really really good -- double hands in my hair, pulling. Then he got my cheek and pinched it. What he's saying is "this hurts, dammit!"

What I was saying was "yeah, I can see that baby. Now let me have my hair back, kthxby." I want medicaid to have to listen to this boy's screams. His mom wants to mail them his shit-smeared pillow as a reminder that this is urgent. I suggested letting him run loose in the office of whoever is dragging their feet on this issue.

But still, an hour of being around people did me good. On the way home, hubby bought me a Steak and Shake. Yay!

My counselor asked me once if I might make my health worse sometimes so I get a chance to focus on me. I mulled that over. I like dealing with health related crap -- not the effects or the pain or the fatigue, but the doctors and paperwork in some bizarre way. It's like I exercise control over it. It's how I get permission to focus on me.

I don't think I make it worse. I think sometimes I see how much I can take before I break myself, stress-wise. But I think that most of my unhealthy habits are maladjusted coping mechanisms. The bad food, the sugar addictions, Dr. Pepper etc. are a way of trying to give myself an energy boost as I struggle with chronic energy issues. And really, as bad as I felt at 9 pm or so, a big ass sippable sundae was a pretty effective way to combat that. The over-scheduling that I did last semester was a deliberate attempt to give myself structure, thinking that my problem was that I was too lazy.

Today, the sippable sundae and going out and letting a boy pull my hair was the lesser of the evils. Oh yeah, I was in a hurry this morning, opened a cabinet, dropped something, bent down, picked it up, stood up as the cabinet door swung back over my head.... yeah.... I hit my head so hard that I had to lie down on the tile -- well, I fell down, but didn't lose consciousness, wasn't bleeding, and stopped feeling like I was going to throw up, so I went ahead and went to work. (I was late). I was paying that I wouldn't pass out in the car, but after a block, I was fine. So when the boy grabbed my hair today, it hurt like hell. but it's really just tender. Not even a headache.

Yeah, and I can't find my prendisone. That's two days without it and I worry my kidneys will shut down. I'm on a low enough dose that shouldn't happen, but it does explain my mood.
dianadragonfly: (Default)
What a shitty day. Literally.

Sometimes, toilet training fails when you work with people with disabilities. Nothing says love like a poop smear.

I got some bodily fluid on my mindcrime shirt. *wails*

All in a day's work, I guess, but man... *goes to shower*
dianadragonfly: (Default)
I came home Friday determined to quit one job. But I think, instead, I have things worked out so I can be happier and have weekends free.
My schedule as it stood last week - MWF 5:30-8 pm -- 5 year old. Not too far away, but takes about 20 minutes to drive at that time a day.
1 - 8 pm Thursdays - 12 year old (That works well. I did get him off to school 4 days a week and all the running almost killed me!)
Every other Saturday 10-5 20 year old -- aprox 30 miles away.

I had made up my mind to quit the 20 year old. It's too far away, it sucks up too much of my weekend, and 9 times out of ten, one of my THREE friggin employers has a training on Saturday, so I have to go to hers on Sunday, or that's all my Saturdays in a row.

Instead, I am going to work with her from 2 pm to 5 on every Friday. My total hours haven't increased -- 12 a month opposed to 14. My time in the car, which is killing me!, has increased slightly, but still, the 5 year old is on the way between her house and mine. So, that's half the mileage I would have done anyway. (I only get paid if the client is in the car with me).

I might cut Fridays with the 5 year old and instead do a long Saturday night once a month, so his parents can go out and have fun. Yay for being paid while kiddos sleep! Even better would be to cut Mondays. :) That way I don't miss out on the benefit of hitting his house on the way home.

I had philosophical objections to my job on the weekends with the 20 year old. I was a paid friend -- recreation and leisure was what I was listed as. What that means is that we hang out -- bowling, shopping, etc. Whatever she wants to do. I prompt her on banking and check writing skills, but really, that's about it. None of us have a friend so awesome that they would drop everything every weekend to cater to your every need. What I keep trying to make her do, and she's scared to do it, is to use that weekend time to go out with her other friends. I've taken her out to see her boyfriend once, but that's it. She has other friends -- she's a wonderful girl. She needs to learn how to maintain those friendships and she won't do it as long as there is a Saturday paid friend provided to her.

So, yeah, I still might do some Saturdays, but I don't feel as locked in as I did. In this position, I can really work on building independence, not making her dependent. I plan to start asking the para transit bus to pick her up and meet me in town so she gets used to riding it.

AND, my weekends are free! My weekends are free!
YES!
dianadragonfly: (Default)
11-year old in a PVS can be taken off life support.

After the Terri Schiavo case, I will never trust anything like this again.
I'm even starting to examine the position of the pro-lifers -- not that a person begins at conception, but that personhood might be a complicated issue and my simple "That's the woman's right to choose" is sort of a cop-out. It's hard hard hard though. I don't want republicans to make a decision concerning my body. Knowing my medical history, and what could happen to me or a baby if I get pregnant, I don't want pro-lifers screaming at me if I have to make a that choice. I don't want them to have a say, or even an influence on that decision.

I don't want the courts to do it either.

But this poor little girl -- no one has EVER acted in her interest in her whole life, from what I can tell. The right to privacy doesn't extend to the right to kill those in our families.
dianadragonfly: (Default)
I remember the end of Marvin's room. Diane Keaton's character has spent her life taking care of her dad, who is bedridden, and a crazy great aunt. She has also just gotten the news that her own cancer is incurable, despite having her sister and nephews typed for bone marrow transplants. The two sisters are sitting in the room of the father, I think, amusing him with a mirror reflecting light on the walls. (I think -- it's been a long time). Diane Keaton's character says "I am so lucky to have had so much love in my life." The sister, wanting to be reassuring, says something like "Oh yes, Dad and Aunt whoever love you very much." It's obvious that the dad isn't even sure she's around.

Diane Keaton's character says," No, it's not that they've loved me. It's that I love them."

At the time, I thought that was sappy.

But I think of that a lot. For those of us who spend our lives loving people who might or might not be able to love us back, or they can't give us any of the "perks" that you're supposed to get from a relationship, who have that emotional investment and aren't able to ever have that translate into any sort of real-world ability to have any input, who have to just bite our lip and bear it when the parents decide a group home is best, or when we have to move on, or when a kid gets transfered, or when a parent or school or guardian or teacher or administrator makes a decision we know is wrong... we just have to love and let go. It's not like 20 years from now, a kid is going to give a speech and say "I remember that Miss Lesley helped me do this..." My kids, for the most part, don't speak. And I get embarrassed when other people note things, as if that the child with autism, or cerebral palsy, or Lanudu-Klneffner, or Angelman Syndrome, or Down's Syndrome, or whatever is so different, is so outside the human race that to love and to teach is somehow only an extraordinary achievement that only someone like me can achieve.

But I get my heart broken over and over -- sometimes through my failings, sometimes through the system. I go visit Kayla and my heart just wants to explode on the drive home. I want to be there so badly, I want to set things up so that she's loved and cared for in the way she deserves. I want everything for all of them and know that I can't do it. So all I can do is love -- even if that means not letting my 12 year old hug me all the time because it's not appropriate and all I want to do it hug him. Let go of my "wild-child" who was too violent for me to take care of her, though I think about her everyday. Go visit my 5-year-old and try to remember that I'm not going to be part of his life forever, so I need to train everyone around him on how to use his communication system. Remember how the 7 year old "got it" -- learned how to use his augmentative system to ask for things, and then moved and I'll never see him again. NOT let my 20 year old get so attached -- she gets wrapped up in her caregivers and that scares them off. She needs friends -- not paid friends. She has friends. Her caregivers need to respect that, and not bask in the affection and praise she so freely offers, and instead take her to visit her friends.

*sigh*
Anyway, I think of [livejournal.com profile] paperflowers a lot. She knows this too and it also turns around and kicks her in the teeth all the time. The people she loves are at the end of their lives. They forget who she is, forget who they are, stop talking, have strokes, die. That's a kind of hard love that most people don't have. And it leaves her with a lot of people that have left her, and it leaves her alone.

There might be something broken about this, something that makes us seek out these sort of doomed relationships. But I don't think so. I think without my juvenile delinquents, my Kayla, my kids who can't talk but are never silent, I would be a worse person. I wouldn't understand that everything isn't always fair in love. The hubby is never going to be great with money and that's how it is. I either let myself feel cheated every month, or I accept that, and do the bills anyway. He's never going to be great at giving comfort on demand. I know that now, and I know that doesn't mean he doesn't love me. I'm not a doormat, by any means, and I get pissed when it's my bank account bouncing all the time.

I think this is sounding too emotional and flowery, and that's not what I meant. I think, without my kids, I wouldn't know what it means to just love -- expect nothing in return.

People say that kids with disabilities are the example of unconditional love, and I used to laugh. Love for Mary was totally conditional -- if you let her eat, she loved you and hugged you. If you said no, or made her mad, she hit or bit and screamed. It was the definition of conditional.

But I realized that they mean to love a kid like Mary is to know how it feels to love unconditionally, even as you're so angry you think you understand child abuse now, even as you're bleeding from a head butt. That's what I've learned from all this.
dianadragonfly: (Default)
What a long strange trip it's been.
My feet are sometimes better, sometimes worse. I'm realizing that a week or a month of foot pain doesn't mean that I will ALWAYS have it, but it's good to plan ahead. The campus Center for Students with Disabilities has a golf cart service that I might take advantage of. Between busses and golf carts, I should be okay. The bus comes from my doorstep, practically, to the place where my office is. the rub is that I'm teaching clear across campus. I am thinking of golf carting that. Barring that, renting a scooter would be cool. I'd only need it for four months.

It's an identity shift every time I have a health shift. What I need to do is develop a stronger sense of self that isn't dependent on how my feet feel.

There's more to tell here, but I am running late. Gotta run!

research

Jan. 4th, 2006 11:43 pm
dianadragonfly: (Default)
Cause, god forbid I weasel the great U of A out of a two block ride that would make the difference between arriving in severe pain and having to take an hour to recover and actually being able to get to my class without killing myself.
Fuckers:
from the transit site:

Under the Americans with Disabilities Act, disability
alone does not qualify a person to ride paratransit. A person must be
functionally unable to use the fixed-route bus service. Paratransit
service is provided to the following three general groups of persons
with disabilities:



Persons who have specific impairment-related conditions which make it impossible, not just difficult or inconvenient,
to travel to or from the bus stop.



They didn't include PAINFUL!

I'm just mad right now because I'm realizing that I'm pretty mobility impaired for the first time in a long time. *sigh*
dianadragonfly: (Default)
I can't take it -- the mom of my 12 year old is thinking of sending him to a residential school.

It's down to that -- it's down to no choices.  Community integration supports aren't enough.  They don't cover well enough when staff is sick, or quits, or when you need more hours, or when the school sucks, or when the kid has a toothache.

I can't blame her.  Not as much as I blamed the parents of the other kids, who were simply DONE and didn't care.
She's single, a little older than me, and has been trying so hard for so long.  Cancer, twice, one husband and one fiance leaving her, saying it's her son's fault.  Her daughter upset and stressed all the time. 

I can't work there 100%.
I can't singlehandedly save them all.
I want my life too.

But I will miss him so much. We have no backups when community support fails -- maybe because we have no community anymore.

*sigh*
dianadragonfly: (Default)
I knew they'd come to good use someday.

I just got done writing not one, but two stories!  With pictures even.  They are social stories for my boy with autism.  Here they are, in full:
Story one: 
When I have to pee, I go to the bathroom and pee in the toilet.  **photo of a toilet with yellow water, with a circle around it and an arrow pointing to it**
I am careful not to pee on the rug or on the floor.  **photo of a rug with a big X over it and then a photo of a bathroom, with a circle around the toilet and an arrow, and a big red X on the floor**
I don't pee in my pants or underwear  **photo of boys' underwear with a big red X and photo of pants with a big red X**
I don't pee on my pillows or in my bed. **photos of a bed and pillows with Xs"
I don't pee in the bathtub  **photo of a bathtub with an X"

*sigh*
The second story is pretty much the same thing, but a different bodily function.  Photo software for kids with disabilities has clip art of turds floating in toilets, if you ever need to know that. 

And they say I'm wasting my writing skills by spending so much time at my jobs. 
dianadragonfly: (Default)
When I'm not on here, I'm not thinking in text.
When I'm not thinking in text, I'm not really having any sort of inner creative life-- just reacting.

When you don't see me on here, smack me, k? Remind me that as much as I love my kids, I'm here to learn to WRITE and I need to finish my thesis. Everything, including my sweet 5 year old who starts conducitve education next week and I'm starting his communication system next week too, to my 12 year old who was throwing a tantrum so bad, his mom called me and asked if I'd take him so she could take a shower (after an hour of riding around together, I told him we were going home and giving his mom a big hug and kiss. He got out of my car and nearly broke the door down, and gave his mom a big "I'm sorry" hug) to my 20 year old who made me pizza the other day -- is secondary to my thesis this semester. I know this.

To know someone who is nonverbal is to really connect in a way that few people on this earth are able to do.
I'm blessed and to convince myself that there is something WRONG with me for liking this, or for doing this work, or that I should pull back -- I think that might cut out the best part of me and the part that gives me the most joy.

But I know that it's not healthy to sit here and plan how to rearrange my great-uncle's room in the nursing home if I could just get to visit. It's not healthy to worry about the future of two little girls in separate group homes, both hours away from me, both totally beyond my reach, even if I did love them and care about them once. I have to untangle.

When I first went to counseling, it was because I couldn't separate myself from problems in my family -- my mom and stepdad were separating and I felt the need to fix it. John helped me learn to put up boundries there. But I think I have learned to withdraw from those closest to me that have the most power and instead I attach it to kids, who have the power to break my heart, but not totally devastate me. Moving on is part of the relationship with my kids and is built into everything I do. i have to explain to my 20 year old all the time that I'm her friend, but I'm also like a teacher. My job is to make sure she's okay without me. That "out" is built into the relationship.

But other relationships? Like, say, with my husband? The only out there is divorce or death, both options so heartbreaking that I can't wrap my head around them. So I have a distance between us. Same with sisters and mom and relatives. But my kids -- I can let them break my heart over and over and know that there's always another kid that will want me, another family that needs help. I'm in demand. I'm valued. I'm appreciated. I'm not someone that can be walked away from -- it's me that usually has to walk away. I'm not gonna lie and say that's not part of it. But it's sheer joy. It really is. It's like knowing something mysterious and wonderful and you try to convince the rest of the world of this and all they see is brokenness. Today, while the 12 year old cooled off and ran around the park, mismatched clothes, waving his hands in the air, making dolphin sounds, I felt sorry for all the people who stared and had no idea what a beautiful creature he is.

And des[ite all the things I'm scared of, that I get off on the power of it, or that I enjoy being wanted, that moment in the park reminds me that there is good in what I do and need not mistrust my motives so much.

If I can pull away long enough to write my book, I can help convince the world of the beauty of this kiddo, of all of them I've come in contact with. I just have to get this done.

blog drama

Dec. 13th, 2005 11:38 pm
dianadragonfly: (Default)
Remember the blog wars I was involved in? I tried to stay a good girl, only sending a cordial, but slightly sarcastic letter to the blogger, who promptly deleted it, leaving on only the more angry letter. So, like everyone else, I wrote a letter to her Dean, since she brought her school into it. I didn't want her free expression right violated, but I wanted to know exactly what sort of psychologists they were training at their school.
Here is a story about them from the St. Louis Post Dispatch. Read more... ) I still want wild dogs to attack her, but that's my thing. One of the well-respected members of the community is now trying to sick the Bill O' Riellys of the world on her and keeps harassing her, with comments like "It's on now. Let the games begin!"

*sigh* If he keeps it up, I'll end up on her side, and I don't want to be on her nasty side. I want to be on the side of human beings who can mourn the death of a child, not on the side of a girl who giggles about "death by lazyboy"

She proclaims to be a member of the LBGT/alternative sexuality magazine on campus. I keep thinking of Fred Phelps, mocking the pain of AIDS victims with "God hates fags" signs at funerals. This is the same thing -- it's a sign saying "We, the cool, the young, the hip, hate your kids and think their deaths are funny."

Or, at the very least "I hate your kids and think their deaths are funny."

The story of Matthew's death has saved probably thousands of lives as parents have shown this article to medicaid and insurance providers as justification for things like enclosed beds, locking doors, alarm systems, etc. After the case of the kids sleeping in cages, (and that wasn't a nice safe enclosed bed -- those were kennels!) it's been almost impossible to get justification for enclosed sleeping areas. We need people brave enough to tell these stories and share their pain so that we can learn from them.

If people like her keep this up, the only good that can come out of Matthew's story will be lost. We can't force her to love our kids. But to not laugh at their deaths -- is that too much to ask?

autism

Dec. 9th, 2005 11:16 am
dianadragonfly: (Default)
Only in the world I live in would it not be a big deal to hear someone complain about wearing glasses because her teenage son ate the last pair of contacts.

It took me an hour to even realize that was something out of the ordinary enough to laugh at.
dianadragonfly: (Default)
So, its 2 am and I've been keeping myself awake and active these last four hours, waiting for dear hubby to bring home the papers I'm grading. He forgot them earlier, so I said no problem. It was 10 pm or so. I worked on cleaning up the bedroom and caught up on a few things -- one, unfortunately, was not livejournal. Sorry all you people I adore.

Anyway, he comes home at 2:20. Sans papers. I should kill him but I won't.

I have a headache and maybe it's better I'm forced to go to bed.

I'm so weary of this, so tired of fighting it.
I was all happy with myself earlier, planning how to change things as to NOT set myself up for total failure. I got some things in the bedroom cleaned up and sorted out. I was ready to go.

Then..boom..he doesn't have them. Grrr... I guess I should go get them myself, but I'm scared to be driving on the streets right now. Please god, let school be canceled tomorrow and then I can skip both jobs and concentrate on grading.

These are more for my own notes, but it's things I've learned this semester on how to deal with my health and work better. Read more... )

Going to bed, Wanted to stay up and type my paper for Contemporary Lit, but my fingers are swollen.
Sleep Les.
You aren't any good to yourself like this.
dianadragonfly: (Default)
What I was doing 5 years ago today.
http://www.honolulumarathon.org/

And I think about how much I hurt now and can barely make it through a day and I want to smack myself. I miss my powerful, confident, marathoner self. She can't simply be a function of my immune system. She has to be around somewhere, even at my sickest.

http://www.honolulumarathon.org/history/2000.html The year I was there.

My team
http://www.arthritis.org/events/JointsinMotion/

Man... What happened to that fearlessness? I remember wondering if that magic was only an AmeriCorps things. That ability to take the most impossible thing and say "I will do this because I want to" and then do it, terrified and shaking and limping, but still do it.

I had some of the worst flares in my life in AmeriCorps, so it wasn't a pain thing. It was just being surrounded by so many people who at that same jumping off point and were willing to hold your hand or push you in, whichever was required.

26.2 miles and all I got was a Tshirt.

I miss me.

words

Nov. 30th, 2005 10:01 am
dianadragonfly: (Default)
All of this got me thinking about the power of words.

I remember my grandfather sitting me down and teaching me the "n" word -- a word designed to hurt and belittle. 
Anyone in this community who used that in a hurtful way would be shunned.
Same with any slurs dealing with sexual orientation. 


So...but yeah...  seeing people kick around the word "retard" like it's NOT an offensive word bugs the hell out of me.
I've been tempted to comment many times in the journals of people I like and respect, but I have bitten my metaphorical tongue. 
I'm not biting it anymore.  Retard is a hurtful word and even the innocent use of it is not cool.  Please consider trying to stop using it. 

It should either be used a verb ("retarded the growth" )as in "to slow" or as a medical noun as something a person has, not is -- "this person has mental retardation".  Most people who deal with the term should know that it means a performance on a standard test, without taking into account that sensory, motor, or communication difficulties affect the test scores.  If I can't speak to answer, my I.Q. is going to fall below the retarded range on the test.  You give me a typewriter and I'm able to move my fingers, did I suddenly get smarter?  Nope.  So, yeah, everyone who deals with the terms SHOULD be aware of that, and most are.  But as many labels do, once it gets applied, it becomes shorthand and soon fewer and fewer people use it accurately. 

So this is my plea. 

Once again, it's not a freedom of speech thing.  It's a respect thing. 

/soap box
dianadragonfly: (Default)
Continuing the D.J. saga:   by the way. I love NPR, but anyway...Read more... )
We can let them live, I guess.  I won't apologize for taking things out of context, because there is no context in radio.  That's the nature of the medium.  They know all their listeners only hear snippets and can't read forwards and backwards. 
"And in other pissed-off avenger news:;As many of you know, I'm deeply involved with Angelman Syndrome.  Today on the listserv, someone pointed us to a blog where the owner had taken information off of AS pages and made fun of it, including a very sad story of a boy who strangled to death on Christmas morning in a recliner.  Understandably, we were pissed and boy....  angry AS mom attack.  I don't want to link to the page because this creep doesn't need the traffic.

I should let it die now.  It was surprisingly easy to find this person's address -- it makes me uber paranoid about my blogging now.  I have the urge to drive the 5 hours it would take me to get there and pull her out of her dorm, but what would that do?  She deserves my pity. 

I'm tempted...so tempted to report her for any possible TOS violations she might have committed through her university or her blog.  I did fire off a complaint to blogspot, but I don't really want to make a martyr out of her for being stupid.  She took words from an angel sibiling website and laughed at them. 

*sigh*

If I didn't believe words have power, I wouldn't write.  These D.J.s wouldn't D.J.  This sad ungraduate wouldn't blog.  I just want people to be aware of their words and the power behind them, and the responsibility to use that power for good.  I hate it when idiots say "It's just my opinion, man!"

Yeah, that's your right.
And you're an idiot.  And I want to let you know that.  That's my right. 
dianadragonfly: (Default)
I've sort of hit a breakthrough in how I deal with my scheduling. [livejournal.com profile] this entry sort of explains it, but it's not just be organized and Day-Timer perfect. It's about having some sort of life where I can be busy, work toward my goals, and not hate myself when my health gets in the way.

Here's the link to the article:

Time Management for Those with Disabling Conditions

I think the movie "I Remember Me" also helped as well, in some bizarre way.

I'm not just lazy and un-organized. I don't have to spend so much time hating myself that I can't get work done. I don't have to cancel all of my jobs and let down all of my families so that I can manage my health. If I really and truly thought I would be better by canceling my jobs, I would.

Anyway, there's a certain peace and well-being that's hit me. I don't have to do what I'm not capable of. I can't hide behind the health excuse when it comes to what I can do. And to know the difference...?

To know the difference, I need to pick at least a few high priority things to get done each day. The first will be something for my school (writing) or my class. The second will be for my job(either paperwork, research, making pecs, etc. Discovery Toys counts here). Third house. (medical, financial, car etc. paperwork, bill paying,all counts too). No freaking out and trying to clean the house when I should be grading. No doing work stuff when I should be writing. I will do one of each, at least a good hour or two of clear effort on one of each, and then I will refuse any guilt for what is not done.

I'm sick, dammit, but I want a life too.

Right now, I stay awake late with frantic, guilt induced energy, knowing it's too late to do anything big, but what if I do one more thing? Like now. It's 11:39 and I just cleaned out the cat litter. I really want to clean up my office a little bit, but that's a three hour task. I need to get my papers graded, as always.

It's okay.
Tomorrow's priorities:
Organize and grade some papers (school)
Paperwork for UCP (work)
finish filling out my medical reimbursement paperwork/ call my doctor to get his part of it (domestic)

If time:
laundry (at least one load)
write more on my book (it's going along great!)

This could happen.
It really could.
In bed, by midnight, watching the Daily Show.
dianadragonfly: (Default)
more for my own reference:
http://chronicfatigue.about.com/od/copingskills/a/timemanagement.htm

"Time management philosophy for the "normal" person is that with
discipline, there can be enough hours in the day to do whatever you
want to do. All that's needed is to break the typical day up into timed
segments. You determine the number of hours you expect to work and
sleep, and how you plan to spend the remaining hours of the day. (This
only works if you are able to maintain a somewhat predictable routine.)
Then, from that routine, you determine which hours would be better
spent doing something else

[...]

"When you must cope with Chronic Fatigue Syndrome, Fibromyalgia, or any
disabling condition associated with full-body fatigue, time isn't a
commodity. It's a luxury. You must take control of it in any way that
you can"

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