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Old 09-12-2006, 06:15 AM #1
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Hope it works out for you, I am a driven advocate for the hydrocephallic community, can you tell yet?
Now that you mention it, I did kinda get that impression!

Thanks!
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Old 09-14-2006, 10:52 AM #2
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Now that you mention it, I did kinda get that impression!

Thanks!
Oh yeah, I forgot to mention. I have SSI, and still live with my family, wich I am sure was totally my dad's choice.
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Old 09-14-2006, 11:17 AM #3
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Thumbs down no choice

I'm sure that it was his choice. After all, "you're disabled, you can't take
care of yourself!" And, SSDI doesn't help by giving us an
amount that we can barely live off of, without helping us find a place of our
own. Shouldn't they (SSDI) be showing us which programs we are
eligible for, in order to pay for Medicare and housing? Instead, they basically
tell us, "here's the money you'll get for the rest of your life, now you're on
your own."
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congenital hydrocephalus, porencephalic cyst,
epilepsy, lumbar spinal stenosis, degenerative
disc disease
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Old 09-14-2006, 12:34 PM #4
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I'm sure that it was his choice. After all, "you're disabled, you can't take
care of yourself!" And, SSDI doesn't help by giving us an
amount that we can barely live off of, without helping us find a place of our
own. Shouldn't they (SSDI) be showing us which programs we are
eligible for, in order to pay for Medicare and housing? Instead, they basically
tell us, "here's the money you'll get for the rest of your life, now you're on
your own."
Couldn't agree more! Too bad I just don't have enough guts to "tell him off"... I want to get a place that is dog friendly so I can have Cocoa with me pretty often. Get this, my sister put her two cents in (wich means nothing) and basically said to my face (and I quote) "You can't possibly live on your own!", well, yeah, the money part (for awhile) is true, but from what I understand, people like us, get a little financial help (and when I said "like us", I totally mean being stuck on the system.)

My sister is a whole other story that I don't EVEN want to get into. I bet you are the only one who does the houswork, too, aren't you. My sisters (yes, I said sisters, the one who is opioniated and a mess worse than I am supposedly in) and one who just HAD to move back home because she was transferred. (I can't wait until JANUARY! I wish I was moving, but I am not.)
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Old 09-14-2006, 12:45 PM #5
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Actually, I haven't been able to do the housework for months, because my
legs just won't hold me up. The washer/dryer is in the basement and I can't
get down the steps. I can't even stand up long enough to wash the dishes.
(Yes, we have a dishwashing machine, but it still has to be loaded/unloaded).

Now, my mother's counting on this procedure that I'm supposed to have
soon (burning the nerve endings in my lower back) to take the pain away.
(Translation: I'll be doing all the housework for them in no time )

What she fails to understand is that my walking/balance is only one of the
problems I'm having. It would help if I could breathe without having to use
the nebulizer machine 3 times a day! Did I mention that I don't
use the machine as much when I'm by myself? Coincidence...??
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Old 09-14-2006, 10:13 PM #6
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Actually, I haven't been able to do the housework for months, because my
legs just won't hold me up. The washer/dryer is in the basement and I can't
get down the steps. I can't even stand up long enough to wash the dishes.
(Yes, we have a dishwashing machine, but it still has to be loaded/unloaded).
Oh sheesh..... my dad's theory on this one... for me, if you can't stand. Sit.

Now, my mother's counting on this procedure that I'm supposed to have
soon (burning the nerve endings in my lower back) to take the pain away.
(Translation: I'll be doing all the housework for them in no time )
I feel badly for you... Don't you get some "help" from your own parents in chiping in with the housework?

What she fails to understand is that my walking/balance is only one of the
problems I'm having. It would help if I could breathe without having to use
the nebulizer machine 3 times a day! Did I mention that I don't
use the machine as much when I'm by myself? Coincidence...??
I've got alergies, extreme cigarette smoke (no one smokes here), cat dander (I don't own cats and if I don't touch one or rub my face in one, I am ok) food alergies, and seasonal alergies are my biggest issues.

I would almost suggest this, but I don't want to hurt your feelings and or ego, but if I do, tell me. Have you ever tried thoose appartments (i think) that are considered "assisted living", no, not a "retirement vilage" or whatever, but think of how much freedom you could get from that, and I would be since it's "assited living" there are ways you could get out of your town or even on short trips.

I think my issues are only based on my dad's know-it-all friends, and like I said, what my dad hears from his friends, concerning me, goes. . The only reason why I don't drive is basically from a very traumatic learning expireince in driver's ed. (Don't ask.)

That means, I am free "to do the housework" like my sisters and my dad expects. (I mean everything) My mom and I are basically the only ones who do it.

(I wish they could live in my shoes for a week!) (((((HUGS)))))
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Old 09-14-2006, 10:24 PM #7
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Originally Posted by sjp_fanatic View Post
(I wish they could live in my shoes for a week!) (((((HUGS)))))
You have no idea how many days/nights I've wondered what they would
do if they suddenly developed hydro...or any other neurological condition,
for that matter.

Actually, the subject of assisted living did come up (I forget how), but
to make a long story short, I'm "not disabled enough". As I understand
it, the program is for severely disabled people and I don't fall into that
category.
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congenital hydrocephalus, porencephalic cyst,
epilepsy, lumbar spinal stenosis, degenerative
disc disease
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