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 Posted: Wed Sep 21, 2011 7:11 pm
Sammirah humble_gypsy_traveller I get a nickname? Yay!! Woohoo!!! xd Partially, it's just that I've screwed up a lot in my life, having a really great g/f and a stable place to live has been the best two things to happen to me in a long time...and I'm really scared about what to do...I mean, my gov't assist won't stop if I move...but I'm just scared that I'll get too comfortable with my g/f and screw it up and be back on the streets (I've moved around 5 times in five years). i meant like, what can i call you? humble sounds kind of weird. yeah, i think i understand. it's like, you just want something stable, and now you have a chance at that, but there's one more risk involved before you go for it, yeah? scary, but so is life. big hugs. Well most who know me on Gaia call me humble...others that somewhat know me call me gypsy...though I've never been call..."hey you that freaky goth girl with melanoma skin!" rofl After I noticed one of my other friends from another guild with white skin, I really liked it so I bought the Masterpieces item...so explains the white skin. I know, too much additional info...but I'm a blabber mouth as you can tell. xd Well I've been thinking really long and hard about the situation at hand...and it's just frustrating that I feel like I'm living in a figurative minimum security prison. Oh, and to top it all off...my apartment has a curfew of 9:45pm and I have to call if I'm staying over at my g/f's place (well, the second part isn't too bad...it's just that it use to piss me off getting heck for not having my meds on me when I was in situations where it wasn't in my control that I was).
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Posted: Wed Sep 21, 2011 7:48 pm
humble_gypsy_traveller hey my oldest has hydrocephalus. now i know someone who i can talk to about it. biggrin . so what is the reason they want you to wait a year? First I'll say this...it's comforting for me to finally know someone on Gaia that has experience with it...I've been trying to find a forum or a guild involved those who know of, or have brain injuries. Well my worker and my psychologist say they're "just looking out for me", and as I stated they want me to wait a year so that they might find me an apartment for myself. It's just that my brain injury isn't as bad as the other guys in the apartment. The other guys more have attitude problems and use their brain injuries as excuses to be rude to the other guys in the apartment, push people around as well as be rude to the staff that work in an office in the apartment. As someone who really can't stand for that b/s, it's getting hard for me to just ignore all that crap, but my worker wants me to just be patient and wait till another apartment comes up...but I'm really going out of my mind! so is your brain injury from the hydrocephalus or from something else? i'm sorry you have crappy room mates. hopefully they can either find you a different place quicker or things work out for you and gf.
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Posted: Wed Sep 21, 2011 8:01 pm
Teeshann humble_gypsy_traveller hey my oldest has hydrocephalus. now i know someone who i can talk to about it. biggrin . so what is the reason they want you to wait a year? First I'll say this...it's comforting for me to finally know someone on Gaia that has experience with it...I've been trying to find a forum or a guild involved those who know of, or have brain injuries. Well my worker and my psychologist say they're "just looking out for me", and as I stated they want me to wait a year so that they might find me an apartment for myself. It's just that my brain injury isn't as bad as the other guys in the apartment. The other guys more have attitude problems and use their brain injuries as excuses to be rude to the other guys in the apartment, push people around as well as be rude to the staff that work in an office in the apartment. As someone who really can't stand for that b/s, it's getting hard for me to just ignore all that crap, but my worker wants me to just be patient and wait till another apartment comes up...but I'm really going out of my mind! so is your brain injury from the hydrocephalus or from something else? i'm sorry you have crappy room mates. hopefully they can either find you a different place quicker or things work out for you and gf. My brain injury is the Hydrocephalus...well I see it as a brain injury...I've had it since birth. Doctors found it out as hydrocephalus because, as you might know or have been told, it's noticed by an abnormal size of the enfant's head, and mine was quite big. I've had to go in for surgery to fix it at least twice a year before I turned eighteen. Well...I'm not going to go by what my worker and my psychologist says...either they find me a new place by mid October, or I'm leaving. I'm actually too pissed off with the whole situation to be scared.
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Posted: Wed Sep 21, 2011 8:12 pm
we've been lucky with our daughter so far. she had her first surgery at 3 months. got an infection and had to have a new shunt put in at 6 months. she's now 6 years old and hasn't had any issues.
other than when she gets upset it's like you can't get through to her. she throws monster tantrums and we wonder how much of that has to do with her shunt. also she gets headaches sometimes. not very often though. been months since the last one.
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Posted: Thu Sep 22, 2011 9:11 am
What's the deal with this new Bid Blaster? I checked the bids and its the same stuff from yesterday. All it's going to do is keep raising the price by one gold until it's the same as the marketplace cost. It just seems silly.
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Posted: Thu Sep 22, 2011 11:10 am
Camwen What's the deal with this new Bid Blaster? I checked the bids and its the same stuff from yesterday. All it's going to do is keep raising the price by one gold until it's the same as the marketplace cost. It just seems silly. I highly agree and I highly doubt that bid blast will make things cheaper as it advertised.
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Posted: Thu Sep 22, 2011 11:14 am
Teeshann we've been lucky with our daughter so far. she had her first surgery at 3 months. got an infection and had to have a new shunt put in at 6 months. she's now 6 years old and hasn't had any issues. other than when she gets upset it's like you can't get through to her. she throws monster tantrums and we wonder how much of that has to do with her shunt. also she gets headaches sometimes. not very often though. been months since the last one. Unfortunately, the mood swings are very common with hydrocephalus. All I can say is to be very patient with her. How is your son? I think you said that he has it too? Did your kids have the enlarged head at birth like I did?
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Posted: Thu Sep 22, 2011 12:41 pm
humble_gypsy_traveller Teeshann we've been lucky with our daughter so far. she had her first surgery at 3 months. got an infection and had to have a new shunt put in at 6 months. she's now 6 years old and hasn't had any issues. other than when she gets upset it's like you can't get through to her. she throws monster tantrums and we wonder how much of that has to do with her shunt. also she gets headaches sometimes. not very often though. been months since the last one. Unfortunately, the mood swings are very common with hydrocephalus. All I can say is to be very patient with her. How is your son? I think you said that he has it too? Did your kids have the enlarged head at birth like I did? no my son does not have it. my daughter (mac) had a raised soft spot at birth. but they said it was normal and it wasn't caught till she was 3 months old. by then there was so much pressure it was splitting the bones in her skull. when i saw that first mri i paniced. i knew she was going to have brain damage. we are sooooo lucky that all we are dealing with is the mood swings. she's getting better about them. they don't happen as often. my husband doesnt' believe me that it has to do with the hydrocpehalus. he says it's just princess syndrome. did you or do you still have headaches from the shunt?
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Posted: Thu Sep 22, 2011 1:20 pm
Teeshann humble_gypsy_traveller Teeshann we've been lucky with our daughter so far. she had her first surgery at 3 months. got an infection and had to have a new shunt put in at 6 months. she's now 6 years old and hasn't had any issues. other than when she gets upset it's like you can't get through to her. she throws monster tantrums and we wonder how much of that has to do with her shunt. also she gets headaches sometimes. not very often though. been months since the last one. Unfortunately, the mood swings are very common with hydrocephalus. All I can say is to be very patient with her. How is your son? I think you said that he has it too? Did your kids have the enlarged head at birth like I did? no my son does not have it. my daughter (mac) had a raised soft spot at birth. but they said it was normal and it wasn't caught till she was 3 months old. by then there was so much pressure it was splitting the bones in her skull. when i saw that first mri i paniced. i knew she was going to have brain damage. we are sooooo lucky that all we are dealing with is the mood swings. she's getting better about them. they don't happen as often. my husband doesnt' believe me that it has to do with the hydrocpehalus. he says it's just princess syndrome. did you or do you still have headaches from the shunt? My mom paniced as well...and back then when they discovered I had it...hydrocephalus was still a very new brain injury, so I was one of the first infants to contract it and get shunted. It's unfortunate that your hubby is in denial of your daughter's symptoms...does she have a lazy eye? That's another symptom of hydrocephalus. The last time I went to the doctors thinking I had symptoms that the shunt was getting worse, they keep saying that I'm fine; however I'm always wary of their opinions. I mean, my balance is fine, and I don't have neck pains and I'm not screaming bloody murder at night like I use to, or vomitting (basically, I was having symptoms of just a flu when my shunt would dry up or the ventericals became enlarged). Those are the common things to look out for when it may be that your daughter may have to go in for a shunt revision. I remember going to the doctor even when I didn't have symptoms, he would just check my eyes and figured out right away whether I had to get my shunt changed or not.
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Posted: Thu Sep 22, 2011 2:09 pm
no lazy eye. just once in awhile she will get a really bad headache. they get bad enough that all we can do is put her to bed and make her take a nap to get it to go away. i get migraines so i feel bad for her.
she used to say she had eggs in her shunt. we have no clue where she got it from.
and then we wonder if she can feel the tubing when she grows because once she was pinching at her neck saying something was biting her. we realized she was grabbing at the tube in her neck.
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Posted: Thu Sep 22, 2011 2:13 pm
Camwen What's the deal with this new Bid Blaster? I checked the bids and its the same stuff from yesterday. All it's going to do is keep raising the price by one gold until it's the same as the marketplace cost. It just seems silly. i was looking at that last night and it already looked like the prices were higher than in the ah. seems kind of dumb to me.
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Posted: Thu Sep 22, 2011 5:06 pm
Teeshann no lazy eye. just once in awhile she will get a really bad headache. they get bad enough that all we can do is put her to bed and make her take a nap to get it to go away. i get migraines so i feel bad for her. she used to say she had eggs in her shunt. we have no clue where she got it from. and then we wonder if she can feel the tubing when she grows because once she was pinching at her neck saying something was biting her. we realized she was grabbing at the tube in her neck. I suggest that you get her checked out if the headaches reside on the eyebrow line and if light hurts her eyes. Personally, that's what I was experiencing if there was something wrong with my shunt. I don't know about the eggs in her shunt...I mean, there's a pump at the top of the head...but that's all I can think of. As I understand it...the tubing sits above the skeleton, so it would make sense that she can feel her tubing. I can feel mine all the way from the back of my head, down the front of my rib cage and a little in the stomach.
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Posted: Thu Sep 22, 2011 5:07 pm
Teeshann Camwen What's the deal with this new Bid Blaster? I checked the bids and its the same stuff from yesterday. All it's going to do is keep raising the price by one gold until it's the same as the marketplace cost. It just seems silly. i was looking at that last night and it already looked like the prices were higher than in the ah. seems kind of dumb to me. I second that.
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Posted: Thu Sep 22, 2011 6:18 pm
My experience with TBI had begun with a legally blind turn and oh boy, was that fun. I'd awoken in what turned out to be the second hospital, with a whole barrage of testing to follow, and so I can only imagine what a nightmare it must be to actually have been born this way.
Cognitive disabilities are simply no fun at all and I sympathize with all of the caregivers in the world, who cannot help but worry about us. Because, as everyone knows, we're a real handful.
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Posted: Thu Sep 22, 2011 6:56 pm
Sindeira My experience with TBI had begun with a legally blind turn and oh boy, was that fun. I'd awoken in what turned out to be the second hospital, with a whole barrage of testing to follow, and so I can only imagine what a nightmare it must be to actually have been born this way. Cognitive disabilities are simply no fun at all and I sympathize with all of the caregivers in the world, who cannot help but worry about us. Because, as everyone knows, we're a real handful. It's been a long ongoing fight for those with cognitive disabilities to get recognized as having a disability as well. Those that are suffering and have suffered from anywhere from aneurisms, hydrocephalus, along with combined physical and mental disabilities; have fought for extra support. A lot of the time, we're just looked down on, pitied and/or discriminated as useless. Especially in the workforce, which is encouraged to work side by side with those who have disabilities, either downsize us or slowly push us out. I've been working with an organization here in Toronto that canvasses for workplaces that value people with disabilities...but they have been met with a slow down slope when it comes to providing assistance to those with disabilities to find suitable work. Most of the time, the best a person in Canada can hope for is to be on gov't disability assistance (which provides just a little bit more then enough to afford the basic living necessities) and to volunteer (that's where the "lazy" stereotype comes in towards people with disabilities)..
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