SSDI and living independently

[Braindrain]

I've been on SSD since '98 and I get only a little over $600 a month. I
can't even afford the monthly Medicare Part B deductible, which is why
I'm still on my father's medical insurance as a "disabled dependent".
Which is another way of saying that my parents don't believe that I can
take care of myself. So, I've lived with my parents for 40 years because
I can't afford any place else to live.

What I really need is more money from SSD ($1000 a month would be nice!)
I need to be able to afford Medicare Part B and a place to live in MD. I don't
want to live with a roomate, because after 40 years with my parents, I just
need my space. And, since my asthma is affected by my mother's smoking,
her chemical cleansers, and houseplants, I could really use some fresh air.

My mother's name is also on my bank accounts and credit cards, so I can't
even buy anything without her knowing about it.

Is there something wrong with me wanting to have a life of my own without
my parents hanging over my shoulder all the time?!:mad: There has to be
a way for me to get out of this house and live on my own, but I haven't
found it yet.

Thanks for letting me rant.

[Bobbi]

Gina,

No, there's nothing wrong with you for wanting to live independently.

I'm not sure how SSD works (since I've not been on it) yet, I'm hopeful, someone else who does understand SSD will post. This is what I don't know: Whether SSD adjusts the monthly amt. if someone could find a place to live on one's own.

Maybe you've already checked out the following, I dunno, so I'll go ahead and post them:

http://www.dors.state.md.us/dors
http://www.mcil-md.org/services.htm
http://www.nod.org/index.cfm?fuseaction=Page.viewPage&pageId=17

[Kitt]

Would this site help at all? Perhaps you have already been thru it.

http://www.ssa.gov/disability/professionals/bluebook/11.00-Neurological-Adult.htm

Kitt

[Braindrain]

I think I remember the blue book from when I started with SSDI. If
I'm remembering this correctly, it was one of the reasons I was able
to get Disability, because Epilepsy (which I have) was listed in it. I
don't remember if hydrocephalus was listed, but that was another
reason that I was able to get SSDI-because I already had a "permanent
medical condition". (They were wording it differently, but I don't remember
the term(s) they used).

I'll look through all the links and hopefully, I'll find something that will help
me.

Thanks, ladies!:)

[sjp_fanatic]

I really feel sorry for you... I really wish I can help you.

How is the blown circuit issues (?) from the last board going, did you convince your mom and dad to look into things so your house won't blow a fuse. (I don't remember what went on with that.)

I am absolutely not siding with your parents. I see your point totally. You need space and CLEAN air to BREATHE. You are INTITLED to that. You know, if your mom and dad are that desperate to keep you home, is there a possibility that something was available within walking distance of your house.
Or hey! What about creating an "appartment", you'll still keep your mom and dad happy by being there, but you really aren't. Maybe if your mom and dad upgrade things like appliances you can take the old appliances and make your own space to live.

I, too, am permanetly (for the time being) stuck at home, but I don't mind with my beloved dog who is such a joy. I want to spread out sooner or later, but I want to be arround for Cocoa since no one is arround that much, except me.

Though, you would think your parents would applaud your desires to be on your own reguardless of anything. I've been trying for some time, but when my sister found out, she totally went bellistic on me and pretty much said I had no business moving out on my own. (Even if it wasn't that far, probably not even a BLOCK away.

It gets better, my own DAD refuses to see things my way and expects me to stay here the rest of my life. I know my mom has faith in me because she supports my desires to be a singer. She knows I am under a great deal of stress being "on the system" and she knows that I deserve better. (Like I said before my dad "twisted" her arm to see things his (and his "know it all" buddies') way about MY life.

Good luck, hon.

[Braindrain]

He looked at the board, but nothing else has been said since, so I'm not sure
if he's doing anything about it. Although, he's been "b--ching" (my mother's
word) about my mother's smoking in the house. I can't seem to get it through
to either of them that the smoking is not the only trigger I have. Even if she
quit tomorrow:rolleyes: , there are so many other things in the house that
can trigger an attack that the only way for me to be able to breathe is if I
moved out. Oh, get this: my brother and his wife are ones who agree that
I should move out, but my mother won't listen.

Round and round we go...:rolleyes:

[Wittesea]

Gina,

When a person is awarded SSDI, the monthy amount they recieve is based on their past earnings. The more you earn while working, the more money per month you will get from SSDI.

For people like me, who became disabled at a young age and barely worked enough and made only a little money at work -- well then there is a minimum payment (in the $600 per month area) that SSDI pays.

So, long story short - whatever amount you get from SSDI now is the most you will get (except of course for the "Cost of Living" increase at the end of every year which is usually about 1%).

So, the $600 you get per month won't be going much higher no matter what (again with the exception of the once a year tiny 1% increase).

However - there are other programs out there that can help.

There is Section 8 housing vouchers where the federal government pays all or part of your rent. Then there are other renters rebate programs on the state, county, and town levels depending on where you live.

There are food stamps, energy assistance for the electrical bill, heat assistance, some states have reduced phone bill rates for the disabled.

Many states will pay the Medicare part B premiums for you, if you are low income and need the help. In your situation because you still live with your parents and are still able to get medical insurance through them then your state will not pay because there is not a dire need... but if the health insurnace through your parents was no longer available, and depending on other circumstances for eligibility, the state could pay for the medicare premiums for you.

To find out about the types of programs in your state, and to find if you are eligible, you would contact the Department of Social Services (formerly known as the welfare department) and talk to a case worker and fill out applications for the programs.



If you continue to be stuck at home - is it possible to purchase one of the Hepa filtration room air purifiers? The Ionic type of air purifiers have been shown in studies to increase the amount of bad air in the home, but the Hepa type of air filtration units have always been considered to be the best.

A room unit can cost about $200 and up depending on the type of unit and the size of unit you need to clean the room, and units that clean the air in the whole house are thousands of dollars.... but could you get a unit to purify just the air in your bedroom so that you would at least have one room in the house that has safe air for you?

[Braindrain]

I have the Ionic Breeze at home, but it doesn't help much unless I stay in
my room all day. There was one in the living room, but my mother didn't
like the fact that it "looked dirty" after a while (an obvious sign that the
air in the living room was polluted), so she washed the air filter...with a
hose!:eek::rolleyes: :mad: Needless to say, that particular air
filter doesn't work anymore...:mad: And, no, she's made no effort to
get a new one. I think she should pay for it, not me, because she's the
one who broke the last one!

Now, about the insurance: the story I get from my mother is that my
brother will be adding me to his medical insurance in a few years. I don't
see how he can do that, though. It would seem to me that after my father
retires this year, I would have to come off of his insurance and sign up for
Medicare. But, maybe there's something I'm not understanding about it.

If I could just figure out a way to look into these programs without my
parents knowing about it.

[stormsun]

Its very hard for adult children to live with thier parents no matter if disabled or not. Some states have social workers that can help you to live alone especially if you are having the problems that you do.Talk to your doctor or maybe medicare and they may refer you. Someone else on this forum may be able to help you more. The other option is a separate apartment in your parents home, in some homes it can be done easily, my house is fairly small but if I had to it would be easy to do and not to expensive. If you don't want your parents to know enlist the help of your brother or sister and let them do a lot of searching for you. Good luck to you .

[sjp_fanatic]

Fron what I understand of your last post, your brother and sister-in-law are urging you to see if you can do better than what your mom and dad want you to do? It kind of sounds that way, at least THEY have faith in you. Correct me if I am wrong.

Hey, you are over 21! You can do whatever you want. So what if driving may be a problem, there is public transportation (I'm in the same battle with my dad) and I am confident you have common sense enough to tell you to stay put if you feel the slightest bit funny.

Can I ask if this has been an issue your ENTIRE life, and I bet you are going to have issues with seccond hand smoke before you have issues with your shunt.

Oh yeah, there is something called "life alert", but there is one thing that coud be an issue? When your shunt goes down, does it go down without warning or do you normally get gradual signs? This may or may not make a difference as long as you get into surgery ASAP.

[Braindrain]

I've been wanting to move out of here since I graduated high school, but
I never had the money to do it. My father and I have both brought up
the issue of second hand smoke, but my mother's attitude is, "That's too
bad." She didn't say it that way, but that's the attitude.

Now, follow me on this: she tells me that I can't live on my own because
I "can't take care of myself". She tells me that I can't live by myself
because "something might happen." So, I've lived with my parents for
40 years and something is happening: I'm suffocating-literally!
Oh, and all these medical conditions that make it "impossible" for me
to live by myself are hereditary.

The problem with public transportation is that I don't live near a bus
stop-I'd have to be driven to one. I don't see any volunteers in this
house.

When I have a shunt failure, there are certain signs, but they can be
misdiagnosed-when I had the shunt failure last year, they thought it
was a stomach virus (because of the nausea and vomitting), until they
did some tests. Also, back in '94, when my shunt failed, the signs were
totally different. That's when my vision problems started, for example,
and my seizures increased. I'm not sure if Life Alert would work for me
or not. I think I'm going to mention Life Alert to the Hydro board and
see what they think. Thanks!:)

[sjp_fanatic]

ABSOLUTELY go for it. You deseve to breathe clear air! (I bet that would help with the headaches as well. (Just a theory.) Keep us posted. We care about you!

[Braindrain]

I checked out the site for LifeAlert and found this:

Home Emergencies

Help, I've Fallen and I Can't Get Up®

In a home fall emergency, or in case of a seizure, heart attack, stroke or other serious illness, a senior usually cannot reach the telephone. She or he may lie on the floor for hours or days, disconnected from any help. This injury can become life threatening.

How can Life Alert® help?

A simple press of a button will instantly activate Life Alert's small base unit located in the house. This unit will immediately communicate with our Monitoring Center, initiating amplified two-way voice communication between the senior and our emergency operators, who will contact neighbors, Paramedics, the Fire Department, Police and/or relatives as needed.
************************************************** *******
It mentions being helpful for people with epilepsy, but it only mentions
"seniors". There's no mention about people under the age of 65 with
disabilities or other medical conditions. So, this product is only being
recommended for senior citizens?:confused:

[sjp_fanatic]

True, life alerts are mostly used by senior citizens, but I woldn't think you would be discrimiated against just because you are not a senior cetizen yet. Personal freedom that comes along with a device like that doesn't discriminate.

Hope you consider this as an option. :)

[Braindrain]

I'm thinking about it, but I want to get as much information as possible
before making a decision, y'know? I'm pretty sure I'll get one, I'm just
not sure when it will be.:)

[sjp_fanatic]

I'm thinking about it, but I want to get as much information as possible
before making a decision, y'know? I'm pretty sure I'll get one, I'm just
not sure when it will be.:)

Hope it works out for you, I am a driven advocate for the hydrocephallic community, can you tell yet? ;)

[Braindrain]

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!:)

[sjp_fanatic]

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. :(

[Braindrain]

I'm sure that it was his choice. After all, "you're disabled, you can't take
care of yourself!":rolleyes: :mad: 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.":mad:

[sjp_fanatic]

I'm sure that it was his choice. After all, "you're disabled, you can't take
care of yourself!":rolleyes: :mad: 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.":mad:
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.)

[Braindrain]

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:rolleyes: )

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!:rolleyes: Did I mention that I don't
use the machine as much when I'm by myself? Coincidence...??:rolleyes:

[sjp_fanatic]

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:rolleyes: )
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!:rolleyes: Did I mention that I don't
use the machine as much when I'm by myself? Coincidence...??:rolleyes:
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)))))

[Braindrain]

(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.

[sjp_fanatic]

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.
Even with everythng else you have? The back thing has to be something an issue....

((((HUGS)))

[Braindrain]

It is, but since I'm going to have the nerves in my lower back cauterized
soon, it may not be considered a "major issue". Especially if my walking
and balance/coordination improve afterwards. I won't know how much
improvement I'll get until after the procedure.

[sjp_fanatic]

It is, but since I'm going to have the nerves in my lower back cauterized
soon, it may not be considered a "major issue". Especially if my walking
and balance/coordination improve afterwards. I won't know how much
improvement I'll get until after the procedure.
I wish I could help further, but I have ran out of suggestions. But, do let us know what happens with your battle to gain freedom. You so deserve it!

[Braindrain]

I will and thanks!:)

[sjp_fanatic]

Hey, I just thought of something... you know how there is a little slip of paper in with a ss check how it says something about helping you safeguard yourself against getting your power, heat, and maybe gas shut off... maybe when you get back on your feet and have absolutely HAD IT putting up with everybody but YOU running your life, you could look into that. What do you have to loose? I am not sure how much it will deduct from your monthly check if it does, but you have obviously tried your hardest to live ON YOUR OWN. It's just a suggestion.

The only thing that could be a problem is transportation. But if you made friends with some kindhearted neighbors, that is a whole other story.

Then again, I bet rent somewhere goes tward gas, heat, and electricity anyway.

Just a suggestion for when you get back on your feet. I have faith you can do this on your own. (I just know it!! :) )

I bet you allmost anything that people who feel "stuck" with you are going to complain because they "have to" make thier house accomadatable to you so you can be the "housekeeper". For years, my own DAD had enough nerves to pretty much say to my face (without actually saying it, of course "rolls eyes".) that I was the reason we weren't very well off all the time. (Like i can help it! please....) BTW. It's been a very long time since my last operation. But yet, allowed his "prized chiildren" to go to universities. (Granted they weren't the BIG ones like, U of M.) But yet, I am the one who got blamed for not being so well off all the time.

Good luck.

[Braindrain]

Hey, I just thought of something... you know how there is a little slip of paper in with a ss check how it says something about helping you safeguard yourself against getting your power, heat, and maybe gas shut off...

My money is directly deposited into my checking account-I never see an
actual check. It's a nice thought, though.:)

[sjp_fanatic]

My money is directly deposited into my checking account-I never see an
actual check. It's a nice thought, though.:)
I see... I just did that last year. It's nice, one less thing to worry about! :) I just hope if I remember correctly, you said something about your mom's name on YOUR account. I hope she doesn't have access to YOUR money and she withdraws it whenever she feels. (That would be terriable.)

(I think someone was added to MY account because of the fact the people at my bank are complete morons and always had one of the numbers wrong on my account. (I mean the balance wither it was begining balance, total withdraws, not enought deposit, or ending balance.... I don't remember.) But it has ALWAYS been the banks fault. Except one time, wich was an accident. And I have gotten one "suprise" wich recently came back in my favor!

(I just hope she doesn't take it upon herself to withdraw YOUR money for HER use. That would be terriable! I never really understood how that could work.)

How do you like that, I'm the one who gets punished for something the bank did? Nice, right?

[Braindrain]

It depends on what you mean by, "HER use". In addition to my own bills,
she's using my money to pay the cable bill up here and the internet bill
in Delaware-neither of which are in my name, BTW.:rolleyes:

It goes back to what she's said before: "There's no reason you can't
do that little bit."

Do you know for a fact that someone was added to your account, or
is it something that you suspect? Would your parents tell you if they
were added to your account, or do they act like you don't have the
right to ask?

Oh, you have no idea what these banks are capable of! My
mother had to change her password at the bank, because they had
locked her out of her account! See, my father was using the online
banking at our computer and saved his password. Well, that meant
that nobody else could sign in, because his account number kept
coming up and we couldn't get it off. My mother tried several
times to access her account and after 3 or 4 tries, the bank
locked her out! You wouldn't believe all the phone calls, etc. that
she had to go through to get it straightened out!:rolleyes:

[sjp_fanatic]

It depends on what you mean by, "HER use". In addition to my own bills,
she's using my money to pay the cable bill up here and the internet bill
in Delaware-neither of which are in my name, BTW.:rolleyes:
OUCH.

It goes back to what she's said before: "There's no reason you can't
do that little bit."
I have heard that one myself, yet, Cocoa is going to be two this year and just right now I had to wrangle her to drop her "walk" collar.

Do you know for a fact that someone was added to your account, or
is it something that you suspect? Would your parents tell you if they
were added to your account, or do they act like you don't have the
right to ask?
Yes, bank statements, but I know for a fact I am the only one who physically takes out my money. (I think it was a "co-sign".) Anway, my SISTER is far worse than me with banks. (Like I said, I only had one overdraft that was result of me (I was FAAAR to generous with my family, and I know this may seem mean, I have cut off anybody borrowing from me until I get paid back) and that was several years ago.)

Oh, you have no idea what these banks are capable of! My
mother had to change her password at the bank, because they had
locked her out of her account! See, my father was using the online
banking at our computer and saved his password. Well, that meant
that nobody else could sign in, because his account number kept
coming up and we couldn't get it off. My mother tried several
times to access her account and after 3 or 4 tries, the bank
locked her out! You wouldn't believe all the phone calls, etc. that
she had to go through to get it straightened out!:rolleyes:
And they say the "normal" people know it all. Please..... :rollseyes: I'm not planning on doing much this year anway so it'll be "stock piling" again. :) I just have to get through Christmas and I will be fine!

I am curious... if its not to nosey... was your mom ALWAYS "co-signer" (whatever) on your accounts. Like she didn't trust you with YOUR money?
To me, it just seems, that people on the "lovely' system are footing the bills an aweful lot. I bet you are expected to foot the bill when and if you and your mom and dad (that is if you are welcome to come) go out to eat. (My dad does this far too often. But for a PIZZA HUT pizza (wich everybody else but him likes) I don't mind. That way the people who like to taste sausage get to have sausage! The place dad insists on getting pizza from is not good at all. Bland sausage and mushrooms.... (Oh well, this is something I don't mind at all....)

I bet you that when you are "forced out" of your house to live with your brother and his family, your mom is going to drop her name from YOUR account and make your brother or your sister-in-law co-signer. (That just stinks.... :()

Hey, remember when I asked if you had someone (a third party) to talk to about the way you are treated? From where I am from, there is something called the FIA. (Do you have your OWN personal cell phone or own personal phone line? You can look up any local FIA in Maryland (that is where you said you were from, right? I don't remember. :) ) and ask for some help, but this is the tricky part, if you will be getting mail from them you may want to have it sent to a personal trusted friend of yours who respects privacy who can contact you directly when it has arrived. (But getting it to YOU is going to be tricky.)

Good luck. :)

[Braindrain]

Yes, she's always been on my bank accounts and credit cards. See, I
have a short-term memory problem and might forget to balance my
checkbook or pay a bill.:rolleyes:

Actually, I think the only way to get my mother's name off of the
accounts and my brother's name on therm is for me to close the
old accounts and open new ones. I'm not positive, but I think
that's how it works. Wouldn't you love having to explain that
to Social Security, my credit card companys, etc.?

As for being "forced out", it may not be much longer-not so
much "forced" to leave, but necessity. See, it's like this:
Raven likes to prowl the neighborhood at 4:00AM. So, of
course, I'm the one she comes to, to be let out. I go out
to the living room...and immediately start having an asthma
attack. Why? Because "Mother Dearest" spent hours sitting
in the living room, reading books and smoking! Did I ever
mention that I have asthma?! We've argued about this many
times. My father and my brother have also argued with her about
it. She refuses to quit. And, my mother wonders why I keep getting
sick!:rolleyes: :mad: My father suggested that I talk to my doctor
about her smoking and my asthma.

Bottom line: One way or another, I won't be here much longer...:mad:

[sjp_fanatic]

Yes, she's always been on my bank accounts and credit cards. See, I
have a short-term memory problem and might forget to balance my
checkbook or pay a bill.:rolleyes:

Actually, I think the only way to get my mother's name off of the
accounts and my brother's name on therm is for me to close the
old accounts and open new ones. I'm not positive, but I think
that's how it works. Wouldn't you love having to explain that
to Social Security, my credit card companys, etc.?

As for being "forced out", it may not be much longer-not so
much "forced" to leave, but necessity. See, it's like this:
Raven likes to prowl the neighborhood at 4:00AM. So, of
course, I'm the one she comes to, to be let out. I go out
to the living room...and immediately start having an asthma
attack. Why? Because "Mother Dearest" spent hours sitting
in the living room, reading books and smoking! Did I ever
mention that I have asthma?! We've argued about this many
times. My father and my brother have also argued with her about
it. She refuses to quit. And, my mother wonders why I keep getting
sick!:rolleyes: :mad: My father suggested that I talk to my doctor
about her smoking and my asthma.

Bottom line: One way or another, I won't be here much longer...:mad:
I used to balance my checkbook once a week, but I don't use one anymore! :)
Why do they all want to have your brothers' name on your account? Is it a kind of like "just incase" type thing that if you got sick (incompasitated, ie shunt problems) and needed money for something he'll be a back-up. (If that is the only reason, that "sort of" makes sense. (I am NOT on your parents side with this, but in a twisted small way, it "sort of" makes sense. (That is someone being able to be there to access money you need if you get slammed with a catastrophic shunt issue. (I don't know. :)) (Maybe that is why it happened to me, you know, a "just in case" scenario-type thing.)

By all means, talk to your dr about your mom's smoking. I bet you the seccond hand smoke can't be good. However, there is a "positive" twist about smoking I am sure you are well aware of.

Rumor has it, the insane taxes added to cigarettes, go to help the system. It's true. I heard it on the news a very long time ago. (Gee. They should combine all the governmental funding programs and figure out who is on what and divide the funds equally.... (I'm talking everything. SS. Medicare, Medicaid... yadda, yadda....)

Oh yeah, I am not sure if this is going to go against what you are saying about "somehow being put on your brothers insurance plan" and how you don't understand how it can happen since you have a "pre-existing condition" as what is is called, I think HIPAA does that, as long as you have had a certin ammount of "creditable coverage" or something like that, I don't remember the term, it can slide over. (I think.)

I know this much because I spent a long time trying to figure this one out because my mom said Something about getting me on her health insurance. (She was looking into it, but I am not mad at her for suggesting it, in fact if something like that happens, I will be THRILLED because I ABSOLUTELY WILL NOT WILLINGLY walk away from perhaps the greatest neursurgeon in the upper midwest. (Indiana. I was lucky with this because my mom worked (and still works) in Indiana) when I was a kid/teenager.)

I haven't brought up the HIPAA (health insurance portability and accountability act established in 1996(?)) yet, but I want to, het if it gets me off the medicaid system. I am all for it because I am NEVER sick and there are people who are really sick who don't get it. :( )

I think I have the link to that page somewhere, just ask for it. :) I wish you luck. Keep in touch.

[Braindrain]

I used to balance my checkbook once a week, but I don't use one anymore! :)
Why do they all want to have your brothers' name on your account? Is it a kind of like "just incase" type thing that if you got sick (incompasitated, ie shunt problems) and needed money for something he'll be a back-up. (If that is the only reason, that "sort of" makes sense. (I am NOT on your parents side with this, but in a twisted small way, it "sort of" makes sense. (That is someone being able to be there to access money you need if you get slammed with a catastrophic shunt issue. (I don't know. :)) (Maybe that is why it happened to me, you know, a "just in case" scenario-type thing.)


I think at least part of it is a "just in case" issue. I'm sure that the other
part is, well, you know...:rolleyes:

Oh, yeah, about the cigarette taxes: my mother buys her cigarettes in
Delaware, because it's a tax-free state.:rolleyes:

What Social Security should do is base the amount of money a person
gets on the expenses they have. Show me one person who can afford
a house, food and clothing on a little over $600 a month! I can't even
afford the Medicare Part B deductible, which is why I'm still on my father's
insurance. At the very least, Social Security should work with low income
individuals to help them get into affordable housing programs. The way
I see it, Social Security fails to understand that medical conditions cost
money...beyond the so-called "cost of living".

[sjp_fanatic]

I think at least part of it is a "just in case" issue. I'm sure that the other
part is, well, you know...:rolleyes:

Oh, yeah, about the cigarette taxes: my mother buys her cigarettes in
Delaware, because it's a tax-free state.:rolleyes:

What Social Security should do is base the amount of money a person
gets on the expenses they have. Show me one person who can afford
a house, food and clothing on a little over $600 a month! I can't even
afford the Medicare Part B deductible, which is why I'm still on my father's
insurance. At the very least, Social Security should work with low income
individuals to help them get into affordable housing programs. The way
I see it, Social Security fails to understand that medical conditions cost
money...beyond the so-called "cost of living".
JMHO, what they should have done a long time ago was take a servey of all the "lucky recieptients" add that number up divide it up by person who gets it
You might be surprised. We all could be getting more out of the deal.

Oh yeah, I know for a fact that my Aunt (someone who is pretty much the bane of my mom's and my existance) has put her two youngest kids on SS.... Is it me or does that seem right? I am thinking no becaus they're not adults yet (21). They don't have limitations of any kind. They're not even old enough to DRIVE. (Does that seem fair the the recipients or the ones who actually NEED it who were turned down?) The only "disability" thoose two have is the fact that thier mother (my aunt) acts like she's living in outer space. (space cadette. Belive me, you don't want to know. :rolleyes:)

JMHO. They need to stop doing this kind of thing and putting KIDS on the system because thoose kids may be able to rise above thier disadavantages (a rough family life) and make something of themselves. It's almost like they get a "free pass" to be total unproductive citezens. (That's what all thoose scholarships are for. To help kids wiether or not disavantaged, to get to college.

Who knows, one of theese kids could be the person that finds the cure for hydro that can reverse what has happened to the current hydro population as well and create a vaccine or something given to the mother once she knows she's pregnat to PREVENT it from happening; (Being born with it.)

Again, I hope you don't get angry reading what I am saying.... but if the whole story I just typed up happens often. It's just not right. In fact, I don't feel right being on the system because my hydrocephalus NEVER acts up. (Well, on rare occasion.)

Take care :)

[Braindrain]

I guess I forgot to mention that I was laid off from my last job in Dec. 05.
I was put in a similar position (washing glassware for the labs) the first
week of '06. The 4th day (Thursday) at the new position, just as I was
getting ready to leave work, someone came in and told me that I might
not be in that position anymore. Sure enough, Friday comes and just
as I'm getting ready to leave, someone comes in and hands me a letter
saying that, "due to the nature of your medical condition, it is considered
unsafe for you to continue working in glassware." The "medical condition"
in question was epilepsy. So, they were going to put me in Housekeeping
(apparently, that's all I'm good for). Guess what? It was middle shift!
Did I mention that I have epilepsy? Did I mention that I can't drive?
Did I mention that I don't live near a bus stop? Which part didn't they
get??? To make a long story short, I've been on SSDI since '98.

As for the kids in the system, I don't know the rules, but I'm pretty
sure that the parents have to prove that the kids are not capable
of working. But, that's just a guess.

[sjp_fanatic]

I guess I forgot to mention that I was laid off from my last job in Dec. 05.
I was put in a similar position (washing glassware for the labs) the first
week of '06. The 4th day (Thursday) at the new position, just as I was
getting ready to leave work, someone came in and told me that I might
not be in that position anymore. Sure enough, Friday comes and just
as I'm getting ready to leave, someone comes in and hands me a letter
saying that, "due to the nature of your medical condition, it is considered
unsafe for you to continue working in glassware." The "medical condition"
in question was epilepsy. So, they were going to put me in Housekeeping
(apparently, that's all I'm good for). Guess what? It was middle shift!
Did I mention that I have epilepsy? Did I mention that I can't drive?
Did I mention that I don't live near a bus stop? Which part didn't they
get??? To make a long story short, I've been on SSDI since '98.

How about temp work?

As for the kids in the system, I don't know the rules, but I'm pretty
sure that the parents have to prove that the kids are not capable
of working. But, that's just a guess.
Probably so, but like I said, this woman is a total moron. (She insists on reffering to my parents as "mommy" and "daddy" when talking to me and I am well beyond that stage.)

[Braindrain]

With all the spinal problems I'm having, there's no way I could work.
Plus, like I said, there's the transportation issue. Besides, I was
already fired once (although they never called it that), because
I have epilepsy. Can you imagine what would happen if I needed
a shunt revision? That already happened while I was at my last
job. My shunt failed in '94, while I was still working. A short time
later, I got a reprimand from my supervisor, about the time I missed
(3 months) while I was recovering from surgery. While he claimed
that he knew it wasn't my fault, I knew he was doing it because
of "company policy".

BTW, it sounds to me like your aunt never grew out of her own
childhood.:rolleyes:

[sjp_fanatic]

With all the spinal problems I'm having, there's no way I could work.
Plus, like I said, there's the transportation issue. Besides, I was
already fired once (although they never called it that), because
I have epilepsy. Can you imagine what would happen if I needed
a shunt revision? That already happened while I was at my last
job. My shunt failed in '94, while I was still working. A short time
later, I got a reprimand from my supervisor, about the time I missed
(3 months) while I was recovering from surgery. While he claimed
that he knew it wasn't my fault, I knew he was doing it because
of "company policy".

BTW, it sounds to me like your aunt never grew out of her own
childhood.:rolleyes:

LOL, about my Aunt, very funny. :)
Regurading you:
You got fired for missing work..... A sutuation you couldn't avoid. Well that stinks. I almost skipped my graduation from HS because unknown to everybody, I had a BLOCKAGE in the little tube, that was painful. I was sick for a very long time, but just chalked it up to stress and the excitement of being out of school and done with all the insesitive comments.

About you being let got from your job due to something you can't control. (The post-op recovery time.) I think there is an act the prohibits that from happening, then again it depends on what year you got fired and when the act was enforced. I think its called "Medical leave act", I think I am missing a word in the begining, I'll look it up later..... Might be the same medical leave act that protects parents from loosing thier jobs to take care of criticallly ill family members.

Take it easy as much as possible. You'll need your strength. :)

[Braindrain]

No, I got the reprimand for the post-op recovery time. I was "let go"
because I "didn't accept the alternate position they offered me"-the
middle shift housekeeping job. You know, the one I didn't have any
transportation for.

My last week of work was the first week of January, 1996.

[sjp_fanatic]

I see.... You must be going crazy not working for so long... Me. I have been crazy with well, you know...... It'll get better for us both. :)

[CoolAngel26]

About you being let got from your job due to something you can't control. (The post-op recovery time.) I think there is an act the prohibits that from happening, then again it depends on what year you got fired and when the act was enforced. I think its called "Medical leave act", I think I am missing a word in the begining, I'll look it up later..... Might be the same medical leave act that protects parents from loosing thier jobs to take care of criticallly ill family members.

Take it easy as much as possible. You'll need your strength. :)

I thought I would fill in a blank for you..It's the Family Medical Leave Act..

CoolAngel26

[sjp_fanatic]

I thought I would fill in a blank for you..It's the Family Medical Leave Act..

CoolAngel26

Thanks!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! :)

[CoolAngel26]

Sure..no problem.:)

[sjp_fanatic]

No, I got the reprimand for the post-op recovery time. I was "let go"
because I "didn't accept the alternate position they offered me"-the
middle shift housekeeping job. You know, the one I didn't have any
transportation for.

My last week of work was the first week of January, 1996.

Because my shunt (little tube) died on me roughly a month after graduation (and a day after my graduation party, I haven't done one single thing. (Except sit and rot on SS. :() Though, I am working on it.

[Braindrain]

I think that, when a person is on SSDI, they should be made aware of
every program that is available to them: Medicare/Medicaid, housing,
transportation, etc. Every effort should be made to help people afford
these services. They should be contacted by Social Security and given
information on these services.

I wish someone from Social Security would come over here and see the
conditions I have to live in. Maybe then they'd see how badly I need to
move out.

[Wittesea]

Social Security doesn't make people aware of programs or make home visits --- BUT the case workers at Social Services in every state can/will do those types of things.

All you have to do is call your local Social Services Department, inform them of your disability, and request a case worker. Those case workers can/will find any and all programs that are available to you, will help you apply for them, etc... It doesn't matter if the programs are on a federal level, state level, or local level, the case workers at social services can help you with all of them.

[Braindrain]

I'll look into that, thanks, Wittesea!:)

[sjp_fanatic]

So there is a difference between the SSI and SSDI in terms of money?

[Braindrain]

Yes, that much I know for a fact, because we looked into both programs
and the amount I would have gotten from SSI was much lower than the
amount I got from SSDI. I know that how much you get from SSDI is
based on how long you worked before becoming disabled, but I don't
remember what the SSI amount is based on.:o

[sjp_fanatic]

Yes, that much I know for a fact, because we looked into both programs
and the amount I would have gotten from SSI was much lower than the
amount I got from SSDI. I know that how much you get from SSDI is
based on how long you worked before becoming disabled, but I don't
remember what the SSI amount is based on.:o

SSI is definately not enough, and I bet SSDI is just as bad. :( (Spoken true word after being nice and supporting (I had no choice... I wouldn't have heard the end of it) five other people.

[monicad1974]

People keeping sick or elderly just to get their SS check...Social Services can come in and take you out of your home if you are being abused or not cared for... But most likely if you can't show you can care for yourself you may be put into a nursing home...

[Braindrain]

Well, my mother is convinced that I "can't take care of myself", but she's
the one who's triggering my asthma with her smoking and chemical cleaners.

I'll give you an example: right now, she's out in the living room, where
she'll be until 2:00 or 3:00AM. When I get up a few hours later and go
out to the kitchen to have breakfast, the first thing I do when I get
back to my room is use the nebulizer machine so I can breathe again.
Why? Because the whole time she was out in the living room, she was
smoking cigarettes, knowing that they would trigger an asthma attack!

She's really "taking care of me", huh?:rolleyes: :mad:

If I was living by myself, half of my medical problems would be solved...

[sjp_fanatic]

Please don't hate me for suggesting this. I'm only suggesting this so you can breathe without your machine... Your mom (yes, I said mom) should definately look into it.

I hope you find it in your state!

http://www.sunandearth.com/ProductsPage.aspx

[Braindrain]

Raven got me up at 2:00AM to go outside. As soon as I opened my
bedroom door, I started having trouble breathing because of the
cigarette smoke. So, I had to use the nebulizer again. I just used it
before I went to bed at 11:00PM!!!:mad: :mad: :mad:

The only thing that's going to help me is getting out of this house.:mad:

[sjp_fanatic]

Is it providing you with oxygen or is it like what severe asthmatics use, but it's only a machine? If it's providing you oxygen, she needs to stop for your safety. Or at least go outside and smoke away. Don't you think? After all, she made the decision to smoke, you didn't male the decision to have all theese problems for the rest of your life.

[monicad1974]

I don't know a lot about breathing problems...But I do know if you have oxygen in your home your treatments can be stopped since cigs can cause the oxygen tank to exploid...

[Braindrain]

No, it's not oxygen, it's medication: albuterol sulfate. As a matter of
fact, I'm using it now. But, she doesn't feel like she should have to
smoke outside. After all, "it's her house".

The other problem is that there's a virus going around (which I've had,
of course) that causes a lot of chest congestion. So, imagine what
that's like for a person with asthma. I finished the antibiotic, but
I've still got the coughing and the chest congestion. As a matter
of fact, a friend of my mother's said that her husband had the
exact same thing...for a month!:eek:

I'm not looking forward to this.

[sjp_fanatic]

Now I know what you mean by "nessity" (of being "forced" out of your home) At least, you are going to have a place to breathe freely sooner or later, yeah, I know it's not what you want to do, but like most people in situations like ours, we have to take whats given to us. (Like it or not.) It's a shame a large majority of the "healthy" (aka non-hydrocephallic community, I bet the same goes for anyother group of people with a certain illness.) thinks we take things for granted since it may seem to them we don't WANT to do anything with our lives and expect others to take care of us.

I just hope she's not acting like a stubborn person to "get her revenge" on your life, since you have breathing issues, I bet you were rushed to the ER more with that issue then your hydrocephalus. (JMHO. Your mom needs a good kick in the butt to realize what she is doing to you. You are virtually a prisioner (in more ways than one) in your own home.)

I bet you spend a lot of time outside when weather permits. At least you'll have a decent ammount of clean air to breathe. (I am outside as much a possible when my dad starts his "pointless" indoor projects.) No, I am not an asthmatic, I thought I was, but it wound up being something funky with my bronchial tubes. (Is that correct, but it wasn't bronchitis.)

Maybe SHE should be outside smoking since she obviously craves it when you are having issues, it could do a world of good for you.

Please take care, I'll be here to listen.... :)

[Braindrain]

Well, I used to spend time outside, taking walks a couple of times a day.
But, since my spinal problems started, I just haven't been able to get out
as much as I used to. Maybe, if this procedure is successful, I can start
walking around more...oh, wait, that's right, I'll be doing more housework.:rolleyes:

[sjp_fanatic]

I bet you wished you could speak up to your mother and tell her how you feel about handling all the housework. (I bet if you did that, there'd be severe consequences....)

[Braindrain]

I have said that to her. The response is: "You live here, too. There's no
reason you can't do (whatever it is)." Except for the fact that I can't
breathe, of course.

[sjp_fanatic]

Geez..... That's just horriable. The more you tell me, the more it seems that your MOTHER resents you because of all the things you deal with. (Wich caused her to spend money. Sort of sounds like my dad, but I think he's chilled out now to some degree. (Thank goodness!!)) I know that is a terriable thing to say....

Hey, I was just thinking, since your mom smokes and I think the "surgon general's warning label", you DO NOT need to respond to this part of the message, but is it at all a possibility that she'd smoke while pregnat with you wich may explain all the problems asside of hydro (My mom never smoked, but had contact with a former smoker, and a current smoker (somone who still smokes, but didn't see them on a daily basis, while pregnat.) you have. I know it's absolutely crazy to say, but many things happen to babies IF the mother smoked while pregnat.

So if the answer to theese questions (wich you don't have to respond to on here, of course) is yes, it's a good chance your medical issues are largly your MOM'S fault.

Good luck to you, once again, I am here if you need to "vent". (I just wouldn't bring this post up with your parent. I don't want you to get into trouble because of me.)

[Braindrain]

She claims that she didn't smoke while she was pregnant with me. As far
as I know, it's the truth-at least, my father hasn't told me otherwise. The
thing is, I was born in '66 and I don't know if the warnings were on the
cigarettes packages back then. So, even if she did smoke, she may not
have known what it does.

[sjp_fanatic]

Yeah, I think the surgeon general warnings we manditory sometime arround the 1980's.

However, if she started back up AFTER you were born, the asthma thing is pretty much explained.

(BTW. I think my dianosis of hydrocephalus was a cruel way of nature. My mom doesn't smoke or drink. I'm not sure, but it was obvious at birth I had it.)

[Braindrain]

I've been reading on a couple other sites that porencephalic cysts (the
cause of my hydro) are hereditary. But, I don't know which side of the
family it could have come from, because I'm the only one in my family
with hydro. And, I don't know a lot about the medical history of the
family lines. I know that there are a couple of medical conditions
that are in different family lines, but not all of them are hereditary.
And, the ones that are hereditary, not all of them are neurological.

[sjp_fanatic]

I've been reading on a couple other sites that porencephalic cysts (the
cause of my hydro) are hereditary. But, I don't know which side of the
family it could have come from, because I'm the only one in my family
with hydro. And, I don't know a lot about the medical history of the
family lines. I know that there are a couple of medical conditions
that are in different family lines, but not all of them are hereditary.
And, the ones that are hereditary, not all of them are neurological.

Ouch, you have a lot on your plate, don't you? I hope you don't develop any more of the problems in your family line.......

Oh, I am the only hydrocephallic person in my immediate famly (1st cousins, aunts, uncles....) However, a distant relative (younger than me) 3rd or 4th cusin, has hydrocephalus and SB. Me, I just have hydrocephalus... oh, I am not sure if once you are diagnosed with a subdural hematoma, no matter what is done, it's there forever.... I have had one of thoose.

[Braindrain]

Well, the degenerating discs are hereditary-they come from my grandmother's
(my father's mother) side of the family. But, that's the only condition that
I know for sure where it came from. "Maybe" the spinal stenosis, too.
But, the epilepsy and vision problems are definitely hydro-related.

[sjp_fanatic]

I agree with epiliepsy and the vision things, you know what... thoose things have improved greatly. (I used to wear glasses.) The last time I had a seizure was either in the very late 1980's or really early 1990's. (A GM.) However, I think there was a small speculation of weither or not I had a, I guess, a simple partial (As Lizard would say) I get thoose feelings a lot, but very far appart wich only lasts less than five secconds. (It seems, I can't really time them because the feeling is gone as fast as it came!)

This might be the only reason I don't drive is because of the seizure history and the fact I usually don't get signals things are wrong with my shunt.

[Braindrain]

I'm not sure if this is nation-wide or varies from state to state, but you
have to be completely seizure free for a certain amount of time before
you can try to get a driver's license. Of course, if you get a license and
sometime later start having seizures again, you risk losing your license.
So, you're d---ned if you do and you're d---ned if you don't.:rolleyes:

[sjp_fanatic]

Yep. Thank goodness for great friends and public transportation! :)