um, let me thinkg... Avril Levigne seems to have pretty clean lyrics,
as well as MXPX.  I think most cd's that AREN'T age appropriate come
with a "parental warning" label.  Audio Adrenaline has clean lyrics,
too.  They aren't really hard core punk  tho.

HIllary Duff has a record now? Gosh, what next, Ashley and Mary Kate
Olson get a record label? lol

--- In neurofibromatosis2@yahoogroups.com, Brandy Hinrichs
<humboldtgirls@y...> wrote:
> My daughter is 10 (she'll be 11 Thursday) and she just discovered
and fell in love with "goth" clothing.  when I was a teen, I remember
the style being called "death-rock", my sister had the black hair and
eyeliner and listened to Punk and Siouxsie and the Banshees and tons
of other music (I myself veered towards the Grateful Dead)...anyway I
live in a town where purple hair definitely doesn't stop traffic,
there's a HUGE population of people with dreads, so it's sorta nice
for my daughter (who has NF) to be able to express herself and be
accepted by her community.  Any suggestions for (age appropriate)
music to turn her on to?  I'm getting tired of listening to Hilary
Duff!!!
> Take care all! Brandy
>
> Dave Morrison <sillygothgit@h...> wrote:
> Hi. Are there any NFers out there that are into
Goth/punk/alternative
> music or fashion?
> I am a ageing rocker of 39 living in London
>
>
> Yahoo! Groups SponsorADVERTISEMENT
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lol, i love my dog too. :)  you can't see it in pic (I look pretty
tame,lol), but I DO have a few peircings... lol...nose, tongue and
navel, but have to take nose and tongue out for work, so don't wear
'em alot, cuz its a pain to take out and put back in all the time. :P
Got quite a reaction out of mum with the tongue stud. :P

--- In neurofibromatosis2@yahoogroups.com, "Dave Morrison"
<sillygothgit@h...> wrote:
>
> Well go out and stop the traffic! LOL. I love your dog.
>
> --- In neurofibromatosis2@yahoogroups.com, littlenloud@y... wrote:
> > lol, I don't dress that way either. London is hip, you can get
away
> > with it, but I live in a small town, where purple hair stops
> traffic.
> > :P
> >
> > --- In neurofibromatosis2@yahoogroups.com, carolinacpnter@a...
> wrote:
> > > im am  40 i like   that type of music    love  romones  but i
dont
> > dress the
> > > punk / goth way

Love the smashing plumpkins... :P  Who sings that song, "I'll treat
you well, my sweet angel..." I have it in my head but I can't think of
the name now... lol, will probably lie awake trying to think of it..

Lol, went to OzzFest and saw a good show a few years ago. laughed my
ass off when Rob Zombie got on stage and said that some dude had
walked up to him and said he was glad he wasnt in white zombie any
more cuz that group sucked... LOL... So rob is up there and says, "so
apparently, I suck, but I don't suck!" heheheheh

anyone else been to ozzfest?

--- In neurofibromatosis2@yahoogroups.com, sugarrita1 <no_reply@y...>
wrote:
>
> definitely like alternative music....love The Smashing Pumpkins and
> Alice in Chains.  Not sure if it is what a ten year old would like,
> though!
> >
> >
> > Yahoo! Groups SponsorADVERTISEMENT
> >
> >
> > ---------------------------------
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> >
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> >
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> > neurofibromatosis2-unsubscribe@yahoogroups.com
> >
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> Service.
> >
> >
> >
> > ---------------------------------
> > Do you Yahoo!?
> > Take Yahoo! Mail with you! Get it on your mobile phone.

definitely like alternative music....love The Smashing Pumpkins and
Alice in Chains.  Not sure if it is what a ten year old would like,
though!
>
>
> Yahoo! Groups SponsorADVERTISEMENT
>
>
> ---------------------------------
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>
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>
>
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> Take Yahoo! Mail with you! Get it on your mobile phone.

Hi. Are there any NFers out there that are into Goth/punk/alternative
music or fashion?
I am a ageing rocker of 39 living in London

Well go out and stop the traffic! LOL. I love your dog.

--- In neurofibromatosis2@yahoogroups.com, littlenloud@y... wrote:
> lol, I don't dress that way either. London is hip, you can get away
> with it, but I live in a small town, where purple hair stops
traffic.
> :P
>
> --- In neurofibromatosis2@yahoogroups.com, carolinacpnter@a...
wrote:
> > im am  40 i like   that type of music    love  romones  but i dont
> dress the
> > punk / goth way

lol, I don't dress that way either. London is hip, you can get away
with it, but I live in a small town, where purple hair stops traffic.
:P

--- In neurofibromatosis2@yahoogroups.com, carolinacpnter@a... wrote:
> im am  40 i like   that type of music    love  romones  but i dont
dress the
> punk / goth way

lol, love the name, dave.  I haven't heard the term "git" for awhile,
lol.  I like all kinds of music, but I do like some punk rock.   Like
alot of alternative and some goth as well. :)  Too much of it can get
annoying though, lol.  I guess I get bored with the same thing all the
time. :P

--- In neurofibromatosis2@yahoogroups.com, "Dave Morrison"
<sillygothgit@h...> wrote:
> Hi. Are there any NFers out there that are into
Goth/punk/alternative
> music or fashion?
> I am a ageing rocker of 39 living in London

Why can't you work?  If you have complications from NF, then your
doctor should be able to affirm that you are unable to work because or
the health problem.  SSI ususally has a doctor examine you as well.
Usually, the disability is looked at not the fact that you have NF.
Like, some people have trouble walking -- that would be the
disability, not the actual NF.  Good luck with the judge.   It might
be interesting to know the outcome of the case -- my back is getting
worse and if the tumor gets large enough, it will block the nerve
messages in my spinal cord and I'll have to remove it or be
paralyzed.  Only problem is, if I remove it, I'll have significan't
muscle loss in my upper legs and will have trouble walking. I
certainly won't be able to be a Nurse.  Never really thought about
SSI, but I may have to get it someday as well...

--- In neurofibromatosis2@yahoogroups.com, "trish"
<devilgirl6662001@y...> wrote:
> hi im new here. my name is trish. i have nf. i am 22 years old. i
> know only one other person that has nf and she is 9 years old. i met
> her at a school for kids that are emotionally desturbed. i dont any
> one else. i am the only one in my family that has it and the little
> girl is the only one in her family that has it. i have been fighting
> to get SSI for two years and i am about to go in front of a judge to
> fight my case. is there any info out there that shows how some
people
> can not work with this condition? it would be very helpfull if any
of
> you know anything.
>
>
>       thanks,
>             trish

--- In neurofibromatosis2@yahoogroups.com, carolinacpnter@a... wrote:
> im am  40 i like   that type of music    love  romones  but i dont
dress the
> punk / goth way

LOL, Cool see my profile. Wherte are you? i sw The Ramones a few
times. they are all dying off now tho, like the New York Dolls.
gotta go!! eastwenders is on. see ya laTER

Hi. Are there any NFers out there that are into Goth/punk/alternative
music or fashion?
I am a ageing rocker of 39 living in London

hi im new here. my name is trish. i have nf. i am 22 years old. i
know only one other person that has nf and she is 9 years old. i met
her at a school for kids that are emotionally desturbed. i dont any
one else. i am the only one in my family that has it and the little
girl is the only one in her family that has it. i have been fighting
to get SSI for two years and i am about to go in front of a judge to
fight my case. is there any info out there that shows how some people
can not work with this condition? it would be very helpfull if any of
you know anything.


       thanks,
             trish

Thanks Rhonda,

Sounds like you had the same kind of tumor to have that done.  Sorry
you had to go through that, it sounds scary, although you sound pretty
tough!  Sounds like I may have to have the surgury in the future, tho
the tumors are slow growing, so hopefully not for awhile.  Thanks for
replying -- I'll send you a mail when I have a bit more time.

Take care,

Nora
--- In neurofibromatosis2@yahoogroups.com, sweetnuttin00
<no_reply@y...> wrote:
> Nora,
>
> Hi my name is Rhonda im 37 yrs old. The nerve that you are talking
> about in your leg, I had removed going on 15 yrs now, yes there is
> muscle weakness and the feeling is completely gone in most of the
> front of my leg. But I've trained my self to walk inspite of the
> disability, its gotten worse this past month or too, that i can tell
> but I still walk with out a brace or a cane, I limp really bad and
> fall alot because the leg just gives out on me. But if i concentrate
> really hard on my walking and noone interupts me i can usually make
> it to my destination with out much trouble..... LOL
>
>
> if you have any questions feel free to email me at
> sweetnuttin00@y...
>
> Take Care
>
> Rhonda

Nora,

Hi my name is Rhonda im 37 yrs old. The nerve that you are talking
about in your leg, I had removed going on 15 yrs now, yes there is
muscle weakness and the feeling is completely gone in most of the
front of my leg. But I've trained my self to walk inspite of the
disability, its gotten worse this past month or too, that i can tell
but I still walk with out a brace or a cane, I limp really bad and
fall alot because the leg just gives out on me. But if i concentrate
really hard on my walking and noone interupts me i can usually make
it to my destination with out much trouble..... LOL


if you have any questions feel free to email me at
sweetnuttin00@...

Take Care

Rhonda

Well, talked to doctor today, and he doesn't want to do the surgury
unless we absolutely have to.  Actually, there are tumors on each
level, but there is one tumor in paticular that is quite large; this
one is actually pushing on the nerve and has invaded the spinal canal
space.  So far, its not cramping any of the nerves -- the doctor said
I was lucky to have an unusually large spinal canal.  So right now
they are going to treat the back pain with physical therapy.

The doctor said the really large one was at T-4, which controls the
legs.  It actually controls the top leg muscle (I should know this,
I'm in nursing school, but I had 2 hours of sleep last night and can't
think, lol).  Anyway.... if they take out the tumor, they have to
sacrifice the nerve wrapped around it, and so I'd have a very weak
leg, and would have difficulties.  So he'd rather not compromise my
physical abilities/strengh unless its absolutely necessary.

Well, got to go...


Take care , Nora

Thanks!  What part of the UK are you from?  My fiancee is from the
West Midlands. :) 

--- In neurofibromatosis2@yahoogroups.com, Mel Gilbert
<doughnutbabeuk@y...> wrote:
> Hi, I had surgery to my upper spine 3 years ago to remove a large
NF tumor and would be happy to talk to you about it feel free to
mail me at doughnutbabeuk@y...
> 
> Mel.
>
> littlenloud@y... wrote:
> HI, i've been away for a while... stopped coming when we kept
getting
> so many spams, but there just arent' any other groups out there
like
> this one.  :)   Have been doing well... getting married soon (Dec.
> 4th), and everything is going well with that.  May need to have
back
> surgury though. Back pain was getting worse, so finally went to
> neurologist about it, instead of chiropractor, and ended up
getting an
> MRI done of lower back and found lots of large tumors pressing on
> spinal cord. Bingo! The mystery of pain is solved, but am not
looking
> forward to surgury.  Anyone else have surgury like this?
>
> Thanks,
>
> Nora
>
>
> Yahoo! Groups SponsorADVERTISEMENT
>
>
> ---------------------------------
> Yahoo! Groups Links
>
>    To visit your group on the web, go to:
> http://groups.yahoo.com/group/neurofibromatosis2/
>  
>    To unsubscribe from this group, send an email to:
> neurofibromatosis2-unsubscribe@yahoogroups.com
>  
>    Your use of Yahoo! Groups is subject to the Yahoo! Terms of
Service.
>
>
> __________________________________________________
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> Tired of spam?  Yahoo! Mail has the best spam protection around
> http://mail.yahoo.com

Thanks!  What part of the UK are you from?  My fiancee is from the
West Midlands. :)

--- In neurofibromatosis2@yahoogroups.com, Mel Gilbert
<doughnutbabeuk@y...> wrote:
> Hi, I had surgery to my upper spine 3 years ago to remove a large
NF tumor and would be happy to talk to you about it feel free to
mail me at doughnutbabeuk@y...
>
> Mel.
>
> littlenloud@y... wrote:
> HI, i've been away for a while... stopped coming when we kept
getting
> so many spams, but there just arent' any other groups out there
like
> this one.  :)   Have been doing well... getting married soon (Dec.
> 4th), and everything is going well with that.  May need to have
back
> surgury though. Back pain was getting worse, so finally went to
> neurologist about it, instead of chiropractor, and ended up
getting an
> MRI done of lower back and found lots of large tumors pressing on
> spinal cord. Bingo! The mystery of pain is solved, but am not
looking
> forward to surgury.  Anyone else have surgury like this?
>
> Thanks,
>
> Nora
>
>
> Yahoo! Groups SponsorADVERTISEMENT
>
>
> ---------------------------------
> Yahoo! Groups Links
>
>    To visit your group on the web, go to:
> http://groups.yahoo.com/group/neurofibromatosis2/
>
>    To unsubscribe from this group, send an email to:
> neurofibromatosis2-unsubscribe@yahoogroups.com
>
>    Your use of Yahoo! Groups is subject to the Yahoo! Terms of
Service.
>
>
> __________________________________________________
> Do You Yahoo!?
> Tired of spam?  Yahoo! Mail has the best spam protection around
> http://mail.yahoo.com

cool -- he sounds like a real gem!  :D  Congrats on your marriage. :D

--- In neurofibromatosis2@yahoogroups.com, "Melissa B. Murphy"
<melissa_b_murphy@c...> wrote:
> I met my husband online (1999). We chatted for a few weeks, and
decided we
> wanted to meet. We met doing the Jimmy Fund walk and have been
doing it
> every year since. Ironically the walk is tomorrow. Well we were
friends for
> a few months, during this time my medical history came out. He
proposed in
> 2001, and we were married last year.
>
>
>
> Jan 03- April 03 I required to have 8 surgeries and he was by my
side the
> whole way.  I never thought I would find anybody myself, but I
did. I would
> and do recommend online dating.
>
>
>
> Melissa
>
>
>
>   _____
>
> From: littlenloud@y... [mailto:littlenloud@y...]
> Sent: Friday, September 17, 2004 9:49 PM
> To: neurofibromatosis2@yahoogroups.com
> Subject: Re: [Neurofibromatosis] i'm back
>
>
>
> Bill, you prolly should go and get it checked out -- it might start
> affecting your vision.  I have tumors on head, underneath scalp,
but
> have not had any brain tumors develop yet.  Tumors on head cause
alot
> of headaches, though, seem to cause extra tension in scalp muscles.
> Sounds like you have an internal tumor, though. :(
>
> By the way, I met my future husband online -- and it was easier
for me
> to meet him, because I wasn't insecure about my appearance.  We
became
> good friends, and by the time I told him about my NF, it didn't
matter
> to him.  Just a thought -- sometimes its easier to meet online
because
> appearance isn't an immediate issue.  Its hard when you feel
> unnattractive to other people - but once you get past the shallow
> people, you find that there are people who choose a mate for who
they
> are, and not they look like. BTW,  I know there is a yahoo group
> called NFsingles. Not sure what its like, has anyone else tried it?
>
> How do other people feel about dating online?  Has anyone else meet
> someone online?  It might be fun to find out how many people are
> couples in here and how they met. :)
>
> --- In neurofibromatosis2@yahoogroups.com, carolinacpnter@a...
wrote:
> > i am  haveing  a pain  behind  left eye  and on  left side of
head
> above eye
> > it feels like pressure  there but i am  not  going  to  Dr
about it
> good
> > luck with  marrige, i  doubt ill ever  find any one  myself  40
now
> and still
> > alone
>
>
>
>
>
>
> Yahoo! Groups Sponsor
>
>
>
> ADVERTISEMENT
>
>
<http://us.ard.yahoo.com/SIG=12cenqdvd/M=295196.4901138.6071305.30011
76/D=gr
>
phealth/S=1705842888:HM/EXP=1095558628/A=2128215/R=0/SIG=10se96mf6/*h
ttp:/co
> mpanion.yahoo.com> click here
>
>
>
> <http://us.adserver.yahoo.com/l?
M=295196.4901138.6071305.3001176/D=grphealth
> /S=:HM/A=2128215/rand=682502994>
>
>
>
>   _____
>
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>
> * To visit your group on the web, go to:
> http://groups.yahoo.com/group/neurofibromatosis2/
>
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subject=Unsubscribe>
>
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> <http://docs.yahoo.com/info/terms/>  Terms of Service.

HI, i've been away for a while... stopped coming when we kept getting
so many spams, but there just arent' any other groups out there like
this one.  :)   Have been doing well... getting married soon (Dec.
4th), and everything is going well with that.  May need to have back
surgury though. Back pain was getting worse, so finally went to
neurologist about it, instead of chiropractor, and ended up getting an
MRI done of lower back and found lots of large tumors pressing on
spinal cord. Bingo! The mystery of pain is solved, but am not looking
forward to surgury.  Anyone else have surgury like this?

Thanks,

Nora

__________________________________________________
Do You Yahoo!?
Tired of spam? Yahoo! Mail has the best spam protection around
http://mail.yahoo.com

Hi Littlenloud!

Just wanted to respond to your mail.  My sister....who has NF...and
may have read your message or is reading this had spinal surgery to
have a tumor removed.  It was quite an ordeal and we (her family)
were there during this time.  If you want to chat about it or want
more info, please contact me.  I am leaving my email addy.  I can
answer questions as best as I can and/or assist you, or my sister
can.  I think it would be a good thing as we (her) has been thru this
or something similar!!!  My email is SugarRita@....  Hope to hear
from you and that you are doing well thus far!

Bill, you prolly should go and get it checked out -- it might start
affecting your vision.  I have tumors on head, underneath scalp, but
have not had any brain tumors develop yet.  Tumors on head cause alot
of headaches, though, seem to cause extra tension in scalp muscles.
Sounds like you have an internal tumor, though. :(

By the way, I met my future husband online -- and it was easier for me
to meet him, because I wasn't insecure about my appearance.  We became
good friends, and by the time I told him about my NF, it didn't matter
to him.  Just a thought -- sometimes its easier to meet online because
appearance isn't an immediate issue.  Its hard when you feel
unnattractive to other people - but once you get past the shallow
people, you find that there are people who choose a mate for who they
are, and not they look like. BTW,  I know there is a yahoo group
called NFsingles. Not sure what its like, has anyone else tried it?

How do other people feel about dating online?  Has anyone else meet
someone online?  It might be fun to find out how many people are
couples in here and how they met. :)

--- In neurofibromatosis2@yahoogroups.com, carolinacpnter@a... wrote:
> i am  haveing  a pain  behind  left eye  and on  left side of head
above eye
> it feels like pressure  there but i am  not  going  to  Dr  about it
good
> luck with  marrige, i  doubt ill ever  find any one  myself  40 now
and still
> alone

HI, i've been away for a while... stopped coming when we kept getting
so many spams, but there just arent' any other groups out there like
this one.  :)   Have been doing well... getting married soon (Dec.
4th), and everything is going well with that.  May need to have back
surgury though. Back pain was getting worse, so finally went to
neurologist about it, instead of chiropractor, and ended up getting an
MRI done of lower back and found lots of large tumors pressing on
spinal cord. Bingo! The mystery of pain is solved, but am not looking
forward to surgury.  Anyone else have surgury like this?

Thanks,

Nora

--- In neurofibromatosis2@yahoogroups.com, chatty_catty_1999
<no_reply@y...> wrote:
>   hi everyone
>   wow  i  totally forgot  about  brians site its been so long
>   i stopped going into room when  we were getting alot of trouble
> makers..sry.  But we are all fine here  daughter is doing great
with
> scoliosis. Still no other signs of nf  son has no signs either i
keep
> fingers crossed. I hope everyone is doing great and i hope to meet
> some new and  catch up with old members

Hi Chatty Catty,
i used to come in this room to so hello to an old member.Glad to hear
things are going well.and hope to stay in touch,

Greetings,
My Neighbor's Granddaughter Bethany is 3 and has Neurofibromatosis.
She has recently had a few strokes, become blind, and had half her
brain removed :-(

Would you mind visiting the website I created, sign the guestbook,
and make a donation if possible. Bethany and her family need prayers
and words of encourement the most!

Bethany's website is http://www.BethanysLife.org

Thank you,
Mike

hi everyone
   wow  i  totally forgot  about  brians site its been so long
   i stopped going into room when  we were getting alot of trouble
makers..sry.  But we are all fine here  daughter is doing great with
scoliosis. Still no other signs of nf  son has no signs either i keep
fingers crossed. I hope everyone is doing great and i hope to meet
some new and  catch up with old members

Hope everyone is well and hope everyone is having a good time.  I am
in the process of deleting messages that do not have anything to do
with nf and in some cases banning members who are abusing the club.

If anyone is getting annoyed by a member or a message email me
williamson50@...  and l will sort it out as quickly as
possible.

Regards

Brian