My family, musings and life in the turtle pond

Posts tagged ‘Health’

Hospital stinks!

I spent most of the day there, and have to go back tomorrow. The muscle weakness is getting worse. I’m having issues with my hanfs now, too. IK.They are not sure if it’s just HIV issues, possible mini-stroke or what. But I didn’t need this. Not now. I was finally making progress!

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Turtle:the human(medical) pin cushion

I am seriously starting to feel like a pin cushion! Today I had multiple appointments and it seems like every single one of them involved some kind of needles. I had to have a blood draw that seemed to last for ever, an IV for my pain medications and treatment, and a shot.And My oxygen, but that is a clip, not really a needle.But I am so sensitive to the feeling of it, that it might as well have been a needle! OUCH!

So when I got home, I hauled my hurting body to the chair to catch up on homework, and promptly fell asleep. And slept all day. that was after I got stuck in the elevator,of course! I hate that elevator. Its so heavy that I don’t have the strength to open it, and had to wait for someone else to let me out. Usually I would have taken the stairs,but I didn’t have the energy to climb 3 flights.

I am trying to stay positive,but I am just so tired and worn down.I don’t even have enough energy to keep my sense of humor. I’m really not getting on the “why me” gerbil wheel, but I am having a hard day. I just don’t have anything left to give,and there are so many things that i want to do. Its frustrating that my body is refusing to do the things I want to do;basic things that everyone does to take care of themselves. I knew this was coming, but I’m still shocked about how fast. I’m not ready!!!!!

I have spent most of this evening curled up on my chair, with my six year old in my lap. Lately he’s been spending as much time as possible as close to me as possible.I have to admit its not as close as he’d like sometimes, Since Tadgh or Spikey is usually in my lap, and when they aren’t there’s a lot of medical equipment (his and mine) in the way. But he’s been totally ignoring it and sitting on my feet folding his origami or signing me stories about his days at kinder.While I was asleep, he even sat on the floor and slept too, leaning against me. He always want me in his sight.

Can’t say I blame him. The poor kid’s been through more than any child should, and he’s only six!!!He just got a new feeding tube, and one implant to help him hear. And that was his 18thor 19th surgery that we know about. His bio mom died of AIDS complications when he was just 3. And right now one of his other moms is deployed.I’m sure he knows part of what happened his mom (mama Angel) and might be matching that with whats happening to me. He’s one of those kids thats wise beyond his years.I cry a lot when the kids are asleep,because it breaks my heart what they have to deal with.

*sigh* It’s going to be another tearful,pain filled night. And i hate that. But what I hate more is that its changing who I am so much. I am usually active and fun loving and have a sense of humor. Today I’m tired,cross, bitter  and feel like my ribs are trying tosquash me every time I breathe.

another crying day!

I should have known when I got up today that it wasn’t worth the bother. The first thing that happened was getting locked in the bathroom. Yeah, I had such a bad time with getting my hand to work that I couldn’t unlock the door! Then getting dressed was so hard that it hurt me.I had to ask my oldest to help out with dressing and getting breakfast in me instead of on me.

My pain was so bad that I ended up at the hospital having to get pain shots. I hate having to get pain shots! But even with them, I can only lie on my bed for the  most part.And I had to rely on the kids to do everything for me. Do you have any idea how embarrassing it is to have to rely on your kids? let alone how hard on the kids that it is.

And then I wasn’t able to go to class when I was supposed to be on the debate team.I couldn’t do it! and I hated that. I wanted to do it so badly!!I really love that class. And this is the second activity I’ve had to miss in two weeks!!!!I couldn’t go to my evening class either. I was supposed to take my midterm in my other class.*sigh*But there was no way I would be able to go to a night class.

I have cried so much today that I’m cried out. Its not that I feel better, I just have no tears  left! I feel a lone,and scared and hurting.I have only my kids here right now,and i have to be strong for them.I can’t talk to RY, because we video chatted last week, and we only get one call a month, and only if they’re in a secure area. I don’t want to scare the kids worse than they already are. The older ones are having a hard time handling things as it is, and the younger ones don’t have any concept of death or dying but know something is going on. I hate what I’m doing to them. My sons have already had one mother die, and now they have me here and Ry away until who knows when. I mean she was supposed to come home a month ago, but her deployment got extended(again). When I look at my kids I cry inside too, because in trying to do what was right (adopting them all) I have now put them in the position of watching a second mother die of pretty much the same thing that killed their biological mom.How much am I putting them through? People keep telling me that they’ll be okay and that kids are like rubber bands. But even a rubber band eventually gets stretched too thin.

I wonder how many people really know just how bad things are. I have already outlived my 6 to 9 weeks by 3 months. But instead of cheering each week makes me more and more worried. Because I know now my time is completely borrowed. And how long can that go on? I don’t know why it makes me upset to keep living. Each day is another day that I can see my 5 month old smile, watch my 17 month old wobble (she’s so not even toddling yet). I can cuddle with my six year old, who is just recovering from his something teenth surgery.(we never did get a complete health record for him.) I can laugh with my kids and spend time with my friends. So all of those are good things. So why do they make me cry?

And back to the school Issue. Part of what upsets me is that my medical conditions are starting to make it look like I’m a flake! And I’m truly not. If only they knew how bad I feel about missing a class, how much it ties me in knots. I wish they knew.

I wish they knew exactly what is going on. But I am also not sure what would happen if I do. I work with kids and i don’t want to jeopardize that. So I say what I can. I live in a Positive living building, and work with kids who have parents dying from the diseases that accompany AIDS. I always hope that they will put two and two together. Its cancer and heart failure and the effects of a car wreck  that’s actually killing me anyway, so maybe I can hide behind that. But I shouldn’t have to hide. I shouldn’t have to apologize when I have seizures or I’m in so much pain I can’t sit up. I just want to be treated like a human. And right now I just want a hug. But most people are afraid to, mostly because they are afraid to hurt me. The lack of contact hurts me worse!

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!!!

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