My family, musings and life in the turtle pond

Archive for the ‘disability issues’ Category

Loneliness, a sort of poem.

Sunday, May 22, 2011 9:40 AM, PDT

Lonelyness( a sort of poem)

 

I wish people would look past the speech difficulty, the slow movements, the floppy head ,

I wish people would look me in the eye, instead of just staring at me.

I wish people would take the time to get to know me.

I wish they would see my love of life, not focus on my bad days.

I wish that they would take the time to hear what I say, Instead of trying to hurry my along, or worse, pointing  out all my days are bad. (No they aren’t, you just doesn’t see me outside of school)

I wish people would let me make my own medical decisions, even if they can see the outcome and I may not.

I wish That I had friends (other than online) who would spend time with me because they want to, not because they are paid to.

I wish I had someone to talk to who was older than the “I can spit my peas farther than you” Age range.

I wish people could see past my shell, and get to know the person.

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I don’t fit in pretty boxes!

I hate paperwork. And yes, I do mean hate, even though that’s a very strong word. I don’t like it because of the boxes that I have to fit into. I never know which ones to fill in in most cases. Sometimes I have to pick the closest answer. Why do we have to categorize ourselves into boxes for other people? Do others really need to know every detail of what they think we are?

For a start, race/ethnic background. Race in and of itself is a made up term, since we are all human. Then there is the ethnic background. I come from one that doesn’t exist. After all, there is no group of Native Americans. There are 450+ different nations who co-exist within the United States.

So now we move on to sex/gender. there are always two choices, Male and Female. But that doesn’t cover a fairly large number of people who are genetically both. Nor does it take into consideration people who “gender flip” depending on the situation. And of course, this leads to “married, single, divorced” . Sometimes none of the above apply. And other options don’t always fit in either.

From there we move to Housing. Rent or own?  Or the other options, like Living in nursing home,halfway house or community center, or homeless, living in a hotel,car, shelter or friend’s couches.

And the lists go on and on! And the boxes get more and more ambiguous. trying harder and harder to pinpoint exactly what the person answering is.

That is the true problem. Most people aren’t just one thing. They don’t fit neatly into little boxes. More and more of us have problems with identifying all the mixes we have. Mixed-race really doesn’t cover it. And they NEVER provide all the possible combinations of mix we are. Bi-racial doesn’t work for people with three or more “races”. Sometimes it’s just easier to pick the race you look the most like and claim that. Other times there are a few groups that come close.

This is why I develop a sense of humor about it. If its a fill in the blank option I will sometimes develop a sarcasting sense of humor and actually put human on the form. Or I’ll put the term I think apply to me most. Border lander.   A border lander is a person on the outskirts. They are part of more than one group,standing on the border,where they have a foot on either side, so to speak. Border landers don’t fit in any group really. None of their sides may truly accept them. And they need to survive caught between catagories, and literally outside the boxes.

medical issues:When I almost died last spring

A sketch from The New Student's Reference Work

Image via Wikipedia

Last spring I had some serious medical issues. Things I’ve had for a long time are getting worse and it started interfering with school.Some days I kept a journal, some days Ry, My partner did.For examplethr very first entry was Ryah’s.

Turtz had to miss class today. She is much too likely to have a stroke to risk it right now. This close to the end of the quarter…it made her so upset. She worked really hard on the last three projects and wants to hand them in. She probably will though. She can hope, right?

April 17,2011 Having a day when my brain is like scrambled eggs. I try reading but the letters all dance and switch places. Audio books make noise, but nothing logical.Music just gives me a headache and light hurts my eyes. Even the shadow on the window blindsmakes me want to thro up.And its Summer,so everyone’s home. and I can’t just rest,even thoughI needit.

Monday, May 2, 2011 8:54 AM, PDT

shake-n-bake

Wow it’s crazy watchin Turtle when she goes into “shake-n-bake” A side effect of  treatment supposedly.
she is super shakey anyway. but these seizures cause her whole body to arch backwards . They happen two or thee times an hour.

How aweful is it for this to be happening constantly? to be in a constant foggy shakey state? I can only imagine.

Functioning …welll that ain’t happenin! She can barely sit up. But she’s tryin! and I think she wants to go to school on Wednesday. We’ll see. I’m trying to get a hold of her teacher to give her a heads up on turtle-care.

She is starting to speak again. not clearly, but at least actual words. She named all the kids, plus “ow” “straighten” (probably her hair, which is frizzed from the hospital stays) and “Aardvark”.HUH!!!!

Tuesday, May 3, 2011 5:13 PM, PDT

Turtle went to class today. She said she shook through most of it and had a couple of bigger seizures too. And holding her head up was “too hard“. This is a class in a good room. who knows what can happen tomorrow! she decided to just hand work in for that class and not attend. I hope she makes the same decision tomorrow. I know she really wants to finish, but the physical strain is just too much for her.
I feel so bad for her right now. The dude in the next room is listening to his music so loud that the whole floor is shaking. I think its hurting her heart,because of the way shes twisting up.staff won’t help, cuz its day time and music is allowed. But watching her suffer from it makes me want to cry. She’s  just had her ninth seizure since getting home and she’s choking poor Baggie(the stuffed panther) to death. At least its a stuffie and not one of the kidlets.

She has been talking today. Clearly, but a lot slower than normal.Still, any progress is good!!

  Saturday, May 7, 2011 10:05 AM, PDT

Not sure how much time is left

unfortunately, turtz just seems to be seizing continually. Her new schedule seems to be get up,sit in day room, nap,bed. All in 5 hours.

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  Thursday, May 5, 2011 10:58 AM, PDT

I can’t believe she did that!

Today was “action plan day”(or aardvark plan day. Not sure what’s with the darn aardvarks!)

She demanded getting up and dressed early, even though staff would have let her sleep in today. Then it was off to the preschool and demanded they change our paperwork. Lets just say, not fun!!But they did it. Grumpily.

Now it’s off to the older kids school for the same thing.
I am trying to get turtle to rest, since she’s had 19 major seizures already and its not even noon yet. but she’s a turtle on a mission, so that probably won’t happen.

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  Wednesday, May 4, 2011 8:58 PM, PDT

Turtz went to class today. I’m not sure how it went, but she’s exhausted! She came home and slept until about a minute ago. And she only woke up so she could do a participation assignment. I think. she actually said Aardvark assignment. So I’m going to let her do it and go back to sleep.

Sunday, May 8, 2011 10:21 PM, PDT

Caring for Turtle

Suggestions from her neurologist, and my opinions in purple.
1. She is almost always seizing. She really should be in a chair, with a full time aid, or in respite care(currently waiting for spot.And she won’t listen to me. Maybe one of the other people she trusts could suggest it?)
2. On the pain scale she is always on a 7.5-8.5. That’s one step above pain so bad you go unconscious. (Having her stuffed panther makes helps both with the pain and with desensitizing herself. Don’t try to take the panther away. she bites hard. And I mean Turtle, not Baggie the panther)
3. Everything can be a trigger. (including anything she can see,hear, touch, smell or taste. Literally everything. loud noises and beeps or flashes are the worst though)
4. Call for help any time you don’t know what’s going on. Its better to over react. (just be prepared for her to refuse help.)
5. Let her sit on the floor if she wants. She  can’t fall off the floor.
6. She really can’t sit for more than about 20 minutes or walk more than 20 steps. (Good luck finding a solution for that one)
7. Because she is always really only semi conscious, she has trouble with speaking as well as moving(and yelling at her doesn’t help. Yes, she really is that out of it.She can get lost walking from our room to the bathroom. Or may truly have no idea where she is going or how she is going to get there.Her speech is really bad right now. So is her writing.)

June 7th

I am havining the first of several surgeries tomorrow. And I have to admit that I’m scared. The last time I had surgery I had an allergic reaction to the anesthesia!!!! And what if it doesn’t work completely?I could be left without any use of my hip at all. And that’s the hip I need.

The kidlets are being great about the whole thing. If they’re worried at all they aren’t showing it. They’re taking it better than  I am.

  • ·  Wednesday, June 22, 2011 8:52 AM, PDT

Back at school

Went to class yesterday and got through the whole day! I did have some seizures, but nothing that they needed to call health services for. YAY! Classes are hard sometimes, because of the florescent lights. But the instructor was willing to turn them off when they got too be too much for me. The class was about stress on children and some of the things that cause stress in children, including homelessness and chronic illness of either the child or a parent. I actually had things to say in class.

I am doing well from my last surgery. It was more successful than they anticipated. So now they can work on the original plan and do the other 5. Yeah, 5! But its not going to be so bad. I’ll be able to have more and more of a real life after each one.

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  • ·  Saturday, June 18, 2011 7:40 PM, PDT

Back at school

Went back to school. I wasn’t sure that I would be able to sit through the whole class after surgery. I actually did okay though I did have minor seizures through it,but nothing huge.I sat with a friend that knows what’s going on. And she was able to help me out and she kinda helps me out before things happen. I’m glad to be back having a normal life.

Today I gotta go check in and do all the prep stuff. IKK! Don’t wanna! SO I’m going to spend as much time on the computer as I can before hand. THat  way I can talk to friends.

LAter gaters!

Turtz had to miss class today. She is much too likely to have a stroke to risk it right now. This close to the end of the quarter…it made her so upset. She worked really hard on the last three projects and wants to hand them in. She probably will though. She can hope, right? =)aturday, June 4, 2011 9:57 AM, PDT

One doze daze (Ry typing)

Having a day when my brain is like scrambled eggs. I try reading but the letters all dance and switch places. Audio books make noise, but nothing logical.Music just gives me a headache and light hurts my eyes. Even the shadow on the window blindsmakes me want to thro up.And its Summer,so everyone’s home. and I can’t just rest,even thoughI needit.

Friday, August 12, 2011 10:53 AM, PDT

weird week

yesterday was my worst treatment yet. It burned so bad that I wanted to just scream. Or pull the IV out. But I couldn’t really do either. So I cried instead. yeah, I’m a big baby, and I know it. but it hurt soooo bad. And I was so wiped out that I basically just slept.

I somehow managed to hurt my back on wednesday, so its back to the doctor. (pun totally intended). I can’t crawl around on the floor for a few more days. You’d be amazed at just how often I actually do crawl on the floor and it totally limits me not to. Grrrr. Can’t wait for this week to be over!!!

Please tell me today is over!!!!!

SF Bernal Heights

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Today is not my day. not even  close. So I am going to give up and go to bed. It has been nothing but disaster after disaster and its gotten to the point that I am starting to have seizures and vertigo.

It started when I was supposed to go on a field trip. Well, here’s the thing. I am not supposed to go on field trips where I am not with an instructor. The instructor, however doesn’t seem to be aware of this. Its a hazard with my disability to be out without a staff member from my building. I am considered a fall risk.There is a reason that I live in special disabled housing!

so anyway, they didn’t want me going out, because I wasn’t going to school. And they delayed me until I was going to be late. A few minutes only though, so I wasn’t really stressing .I showed them the assignment on line and they gave me the community cell phone. (I’ll get back to the cell phone issue later)

But then I had a seizure on the bus. And after that, I got lost. I did eventually find the library, 10 minutes after everyone left!!! Not that I can blame them. It was great that they waited an hour. (An hour where I was wandering around 3 blocks away. ) Also, If I had ever heard the phone ringing I would have known my group was also trying to find me. Another problem with that…The person who left the message didn’t leave a call back number, so I had to call back all 28 numbers on the missed call list to find her. And of course after waiting for an hour they were fed up with me. I told them I’d make it up and explain to the instructor.

I’m just so frustrated!!!!!!! I try not to complain most of the time. and I try not to question “why me?” because all that ever does is take a lot of energy that I can’t afford to waste anymore. But I sometimes wonder about the assumtions people make and if not being able to meet with my group will hurt me. First is the assumption that all students can go on field trips. And the assumption that we all have cell phones. Or that we all have computer access when they make classes Tech enhanced. I mean, there were no accomodations made  for this trip. No one checked that I was allowed to go, arranged transportation, got me a helper to come with me,made sure I had a phone and the numbers of my group.So will they hold it against me that I was physically unable to do what they asked? Oh well. Now I know how to find Bernal Heights.

I am upset because I missed out on a fun project because my stupid health is failing, and I can’t do the things I want. I am worried that my grade will be affected by something I had no control over. Sometimes I just want my terminal illness to go away!! I just want to do the same things that everyone I know are able to do. I want to be a real city college student, not a make-a -wish. I want to live in real housing and be a good mom to my kids. I wish they were in a real building, not a community living center thats a step above a shelter, barely.

And because of the seizures I am getting a horrible headache. Actually, I had to stop this entry and start again after a break.I was actually crying, that’s how frustrated I got. I rarely get that upset. And it is already taking a physical toll on me. I have a few minutes to get myself together enough so that my kids don’t see me hurting again. They’ve seen enough trauma.

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