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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
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.)
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.
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
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!!!