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Hi Nat! I am also a fellow lurker who generally only puts their 2

cents in when procrastinating homework (like now). I am 23 with type

II, currently going to school at UW-Whitewater (WI) for Multimedia and

Graphic Design. Looking forward to hearing from you more!

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Hi ,

I understand the need for procrastination, it was something I did a lot of

when I was at uni (though that was a few years ago now!)

What would you like to do when you finish school?

N@alie :)

From: [mailto: ] On

Behalf Of sweetleo03

Sent: 15 November 2008 19:40

Subject: Re: A re-introduction

Hi Nat! I am also a fellow lurker who generally only puts their 2

cents in when procrastinating homework (like now). I am 23 with type

II, currently going to school at UW-Whitewater (WI) for Multimedia and

Graphic Design. Looking forward to hearing from you more!

No virus found in this incoming message.

Checked by AVG - http://www.avg.com

Version: 8.0.175 / Virus Database: 270.9.4/1790 - Release Date: 15/11/2008

09:32

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Hi Nat!

Welcome to our crazy little list. =)

My son will be 3 in 15 days, and my daughter is 5.

My hobbies include coffee, reading, and great sex. =D

-Amy

On Nov 15, 2008, at 9:04 AM, Meadows wrote:

> Hello everyone,

>

> I have been a lurker on this list for many years but now I would

> like to

> become a bit more involved for . So here is a bit of an introduction

> to me

> J

>

> My name is , but please call me Nat, I live in the UK, I’m 43

> (still

> not sure how that happened!) I have a 3 year old son and a retired

> assistance dog who both live with me and I also live with a lesbian

> couple

> who work as my PAs (I also have 4 other PAs). I’m a single lesbian –

> maybe

> bisexual (long story there) and have SMA 2. Hobbies/ interests mean

> I love

> my computer, my friends, coffee, politics -- but primarily my

> gorgeous son

> and the (amazing) honour of being his mother.

>

> I work as a freelance disability equality trainer and am beginning

> to think

> that I need to think about ‘retiring’ as my health is dictating that I

> should work less, which means I keep having to cancel various

> contracts.

> I’m sure that many of you understand that working on a self employed

> basis,

> means that no work = no ££. I’m on my 4th chest infection this year,

> which

> apart from the usual annoyance that goes with them, I can’t keep up

> to date

> with my workload either. I am usually a busy and active person and the

> thought of not working is one I can’t get my head around.

>

> Anyway, it would be nice to get to chat with other SMAers, so I’m sure

> you’ll hear more from me ...

>

> Nat

>

>

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Hi Amy,

Thanks for the welcome, it's great to be here.

My son was 3 in October -- we must have been pregnant at the same time! How

was it for you? I'm also wondering what a 2nd pregnancy would be like....

would love another child... the thought makes me very broody. I wasn't so

well after the first, that has held me back a lot.

I think coffee is one of life's essentials,..

As for sex ... not had any in a long (far too long!) time ... kind of an old

fav hobby -- lol and another life's essentials

N@alie :)

Re: A re-introduction

Hi Nat!

Welcome to our crazy little list. =

My son will be 3 in 15 days, and my daughter is 5.

My hobbies include coffee, reading, and great sex. =D

-Amy

------------------------------------

A FEW RULES

* The list members come from many backgrounds, ages and beliefs So all

members most be tolerant and respectful to all members.

* Some adult language and topics (like sexual health, swearing..) may

occur occasionally in emails. Over use of inappropriate language will

not be allowed. If your under 16 ask your parents/gaurdian before you

join the list.

* No SPAMMING or sending numerous emails unrelated to the topics of

spinal muscular atrophy, health, and the daily issues of the disabled.

Post message:

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How funny! My second pregnancy was a lot more difficult than the

first. I got bigger much faster, which meant I was in pain much

sooner, and I think I lost a lot of strength during that hasn't been

regained. That said, I cannot imagine my life without my kids. It's a

very personal decision!

Good luck with the sex quest. Can't imagine my life without that

either. Hehe.

On Nov 15, 2008, at 4:48 PM, Meadows wrote:

>

> Thanks for the welcome, it's great to be here.

>

> My son was 3 in October -- we must have been pregnant at the same

> time! How

> was it for you? I'm also wondering what a 2nd pregnancy would be

> like....

> would love another child... the thought makes me very broody. I

> wasn't so

> well after the first, that has held me back a lot.

>

> I think coffee is one of life's essentials,..

>

> As for sex ... not had any in a long (far too long!) time ... kind

> of an old

> fav hobby -- lol and another life's essentials

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Hi ,

A re-welcome to you! I'm 42 and live in Berkeley, California. I

just shut down my consulting business last March. It was almost as

hard to make that decision as it was when I went out on disability

from my office job in November '04. Both changes really messed with

my identity. I'd been working as a disability advocate since 1988.

It's been such a passion for so long, and it will always be a part of

me, but I can't allow it to be such a big part of my life now.

My health suffered, my home was hard to maintain, and I didn't have

enough energy left for the people I love or the creative projects I

missed. It sounds like your son is a pretty good reason to not work

and stay healthy!

What kind of government support is available to you? Health

insurance? Does your son have a co-parent? Working at our age is

physically difficult but so hard to not do. I really felt ripped-of

while I was just reaching the top of my career. I'm sure you'll do

what's best for you.

I look forward to getting to know you. I'm on messenger as:

althegrrl

Cheers!

Alana

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Hi Nat.  Glad you are joining in.  I am 46 y/o, SMA II, married 17 years this

month, use a motorized chair, have a trach button, and work full-time as a case

manager in a hospital.

Lori

________________________________

From: Meadows <mulberry1104@...>

Sent: Saturday, November 15, 2008 2:45:49 PM

Subject: RE: Re: A re-introduction

Hi ,

I understand the need for procrastination, it was something I did a lot of

when I was at uni (though that was a few years ago now!)

What would you like to do when you finish school?

N@alie :)

From: @gro ups.com [mailto:@gro ups.com] On

Behalf Of sweetleo03

Sent: 15 November 2008 19:40

@gro ups.com

Subject: Re: A re-introduction

Hi Nat! I am also a fellow lurker who generally only puts their 2

cents in when procrastinating homework (like now). I am 23 with type

II, currently going to school at UW-Whitewater (WI) for Multimedia and

Graphic Design. Looking forward to hearing from you more!

No virus found in this incoming message.

Checked by AVG - http://www.avg. com

Version: 8.0.175 / Virus Database: 270.9.4/1790 - Release Date: 15/11/2008

09:32

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Hi Nat,

I'd like to hear more about the " I'm a lesbian but maybe bi-sexual "

comment, if you don't mind. Did you get pregnant the old-fashioned way, or

were you artificially inseminated? Just curious.

Kemp

Director, OurGV Rewards

http://www.ourgvrewards.com

Phone: 714-974-5799

Business Phone: 714-974-5693

Cell Phone: 714-244-5920

Phone: 949-579-9465

Email 1: d-kemp@...

Email 2: dkemp@...

Re: A re-introduction

Hi Nat!

Welcome to our crazy little list. =

My son will be 3 in 15 days, and my daughter is 5.

My hobbies include coffee, reading, and great sex. =D

-Amy

------------------------------------

A FEW RULES

* The list members come from many backgrounds, ages and beliefs So all

members most be tolerant and respectful to all members.

* Some adult language and topics (like sexual health, swearing..) may

occur occasionally in emails. Over use of inappropriate language will

not be allowed. If your under 16 ask your parents/gaurdian before you

join the list.

* No SPAMMING or sending numerous emails unrelated to the topics of

spinal muscular atrophy, health, and the daily issues of the disabled.

Post message:

Subscribe: -subscribe

Unsubscribe: -unsubscribe

Link to comment
Share on other sites

I guess that for me sex and pregnancy aren't necessarily entwined - let me

explain, before you think I don't understand the birds and the bees! I

conceived , my son, by donor insemination from a gay friend (no sex

there just a 5ml syringe!). if I were to have a second child it would be by

the same method.

However, I am single, and 'wltm' that certain person who everyone

tells/assures me is out there somewhere - I'm laughing to myself as I type

this cos I didn't expect to be telling you all about my singleness and make

myself sound desperate (cos I'm not!)

I also realise that the more I talk about it the deeper I dig myself into a

big hole... anyway...

Amy, I know exactly what you mean, I cannot imagine life without , even

though I lost a lot of my (already miniscule) strength-would still do it all

again. It's great to meet you J

N@alie :)

From: [mailto: ] On

Behalf Of Amy

Sent: 15 November 2008 22:02

Subject: Re: A re-introduction

How funny! My second pregnancy was a lot more difficult than the

first. I got bigger much faster, which meant I was in pain much

sooner, and I think I lost a lot of strength during that hasn't be

regained. That said, I cannot imagine my life without my kids. It's a

very personal decision!

Good luck with the sex quest. Can't imagine my life without that

either. Hehe.

On Nov 15, 2008, at 4:48 PM, Meadows wrote:

>

> Thanks for the welcome, it's great to be here.

>

> My son was 3 in October -- we must have been pregnant at the same

> time! How

> was it for you? I'm also wondering what a 2nd pregnancy would be

> like....

> would love another child... the thought makes me very broody. I

> wasn't so

> well after the first, that has held me back a lot.

>

> I think coffee is one of life's essentials,..

>

> As for sex ... not had any in a long (far too long!) time ... kind

> of an old

> fav hobby -- lol and another life's essentials

No virus found in this incoming message.

Checked by AVG - http://www.avg.com

Version: 8.0.175 / Virus Database: 270.9.4/1790 - Release Date: 15/11/2008

09:32

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I have number of friends who have donor-gay-men in their lives.

Sometimes one cannot wait for " Mr. Right " comes along, and if Mr. Right

is actually Ms. Right then donor dad is needed for the Rainbow Family!

Good for you going out to get what you want. By the way, I'm a bi-dyke

in a monogamous long-term heterosexual relationship. We haven't

married for a number of reasons: would screw up my health care

benefits; don't believe the government should be involved in

community/personal/religious matters (why regulate love?); and if queer

folk who love each other as much as straight folk, neither should be

denied the right.

Soapbox Al ;-)

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Thanks Alana, it's a pleasure to meet you - I too do not believe love needs

to be regulated, - just want to add that I hate living in a society where

'straight' love is seemingly valued more than the rainbow world I live and

love in J but I'll stay off my soapbox for tonight

I'd love to hear more about your working life too - sounds like you and I

have things in common

It is midnight here and I have an early start so I'll look forward to

talking more tomorrow

Glad you guys are here J

N@alie :)

From: [mailto: ] On

Behalf Of Alana

Sent: 15 November 2008 23:39

Subject: Re: A re-introducti

I have number of friends who have donor-gay-men in their lives.

Sometimes one cannot wait for " Mr. Right " comes along, and if Mr. Right

is actually Ms. Right then donor dad is needed for the Rainbow Family!

Good for you going out to get what you want. By the way, I'm a bi-dyke

in a monogamous long-term heterosexual relationship. We haven't

married for a number of reasons: would screw up my health care

benefits; don't believe the government should be involved in

community/personal/religious matters (why regulate love?); and if queer

folk who love each other as much as straight folk, neither should be

denied the right.

Soapbox Al ;-)

No virus found in this incoming message.

Checked by AVG - http://www.avg.com

Version: 8.0.175 / Virus Database: 270.9.4/1790 - Release Date: 15/11/2008

09:32

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After graduation in May I plan on moving to Madison with a friend who

will be starting nursing school next Fall. She is currently one of my

PCA's here in Whitewater and plans on continuing to do most of my

cares once we get our own apartment. I know that sharing an apartment

with a PCA can sometimes turn out badly, but we spend most of our time

together anyway and we get along great so I guess I lucked out! After

6 years of living and attending school here, I'm definitely ready to

move on to " bigger and better " things! I have always loved Madison for

its diversity (being from Wisconsin, there isn't much of that anywhere

but Madison or Milwaukee)and friendly, not-too-big-city atmosphere. I

would love to find a job working on video editing, but with my lack of

" real world experience " , I wouldn't be opposed to starting out

designing t-shirts or window paintings :P What did you study while

going to school?

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Lori,

Do you have a medical degree or something? How does one become a case

manager in a hospital?

Kemp

Director, OurGV Rewards

<http://www.ourgvrewards.com/> http://www.ourgvrewards.com

Phone: 714-974-5799

Business Phone: 714-974-5693

Cell Phone: 714-244-5920

Phone: 949-579-9465

Email 1: d-kemp@...

Email 2: dkemp@...

<http://www.ourgvmall.com/djk> banner021.jpg

<http://www.benefitbar.com/benefitbar/subscribe/toolbar.php?toolbarId=1500>

000-toolbar-banner-1

From: [mailto: ] On

Behalf Of Lori G

Sent: Saturday, November 15, 2008 3:14 PM

Subject: Re: Re: A re-introduction

Hi Nat. Glad you are joining in. I am 46 y/o, SMA II, married 17 years

this month, use a motorized chair, have a trach button, and work full-time

as a case manager in a hospital.

Lori

________________________________

From: Meadows <mulberry1104@...

<mailto:mulberry1104%40.co.uk> >

<mailto:%40>

Sent: Saturday, November 15, 2008 2:45:49 PM

Subject: RE: Re: A re-introduction

Hi ,

I understand the need for procrastination, it was something I did a lot of

when I was at uni (though that was a few years ago now!)

What would you like to do when you finish school?

N@alie :)

From: @gro ups.com [mailto:@gro ups.com] On

Behalf Of sweetleo03

Sent: 15 November 2008 19:40

@gro ups.com

Subject: Re: A re-introduction

Hi Nat! I am also a fellow lurker who generally only puts their 2

cents in when procrastinating homework (like now). I am 23 with type

II, currently going to school at UW-Whitewater (WI) for Multimedia and

Graphic Design. Looking forward to hearing from you more!

No virus found in this incoming message.

Checked by AVG - http://www.avg. com

Version: 8.0.175 / Virus Database: 270.9.4/1790 - Release Date: 15/11/2008

09:32

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Hi ! ~a (31 yrs, engaged, SMA-II, lives in Ohio).

From: Meadows <mulberry1104@...>

Subject: A re-introduction

Date: Saturday, November 15, 2008, 9:04 AM

Hello everyone,

I have been a lurker on this list for many years but now I would like to

become a bit more involved for . So here is a bit of an introduction to me

J

My name is , but please call me Nat, I live in the UK, I’m 43 (still

not sure how that happened!) I have a 3 year old son and a retired

assistance dog who both live with me and I also live with a lesbian couple

who work as my PAs (I also have 4 other PAs). I’m a single lesbian – maybe

bisexual (long story there) and have SMA 2. Hobbies/ interests mean I love

my computer, my friends, coffee, politics -- but primarily my gorgeous son

and the (amazing) honour of being his mother.

I work as a freelance disability equality trainer and am beginning to think

that I need to think about ‘retiring’ as my health is dictating that I

should work less, which means I keep having to cancel various contracts.

I’m sure that many of you understand that working on a self employed basis,

means that no work = no ££. I’m on my 4th chest infection this year, which

apart from the usual annoyance that goes with them, I can’t keep up to date

with my workload either. I am usually a busy and active person and the

thought of not working is one I can’t get my head around.

Anyway, it would be nice to get to chat with other SMAers, so I’m sure

you’ll hear more from me ...

Nat

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Hi Nat

My name is Suzanne. I'm 35 have type III and the mother of three

ornery but beautiful children.

On Nov 15, 2008, at 9:04 AM, Meadows wrote:

> Hello everyone,

>

> I have been a lurker on this list for many years but now I would

> like to

> become a bit more involved for . So here is a bit of an introduction

> to me

> J

>

> My name is , but please call me Nat, I live in the UK, I’m 43

> (still

> not sure how that happened!) I have a 3 year old son and a retired

> assistance dog who both live with me and I also live with a lesbian

> couple

> who work as my PAs (I also have 4 other PAs). I’m a single lesbian –

> maybe

> bisexual (long story there) and have SMA 2. Hobbies/ interests mean

> I love

> my computer, my friends, coffee, politics -- but primarily my

> gorgeous son

> and the (amazing) honour of being his mother.

>

> I work as a freelance disability equality trainer and am beginning

> to think

> that I need to think about ‘retiring’ as my health is dictating that I

> should work less, which means I keep having to cancel various

> contracts.

> I’m sure that many of you understand that working on a self employed

> basis,

> means that no work = no ££. I’m on my 4th chest infection this year,

> which

> apart from the usual annoyance that goes with them, I can’t keep up

> to date

> with my workload either. I am usually a busy and active person and the

> thought of not working is one I can’t get my head around.

>

> Anyway, it would be nice to get to chat with other SMAers, so I’m sure

> you’ll hear more from me ...

>

> Nat

>

>

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Hi Nat,

welcome! I am Camilla, 37, SMA II, from Germany. Concerning to the

fact that most of the other users live in the USA I think we are

almost neighbors. ;-) Nice to meet you.

What can I tell you about me?

In my spare time I love reading whodunits and listening to

audio-books. I won some prizes by publishing my own short-stories.

Moreover I love cooking, meeting friends for a coffee and rumble about

the city and can phone for hours. I have the most wonderful boyfriend

and really can say I am a happy person and love my life.

I am the chairman's secretary and work part-time in a huge social

network that cares for disabled, old and ill persons in Germany and

South Africa. It is a very fulfilling job and I love it, although

after work I sometimes think it is too hard for my constitution.

Every time I read that one of the SMA-girls gave birth to a child I am

very touched. Surely I want to be a mother (tick tock - the body

clock) but I really am afraid of loosing strength. Did you loose a lot

of power?

Have a nice day

Camilla

>

> Hello everyone,

>

>

>

> I have been a lurker on this list for many years but now I would like to

> become a bit more involved for . So here is a bit of an

introduction to me

> J

>

>

>

> My name is , but please call me Nat, I live in the UK, I'm 43

(still

> not sure how that happened!) I have a 3 year old son and a retired

> assistance dog who both live with me and I also live with a lesbian

couple

> who work as my PAs (I also have 4 other PAs). I'm a single lesbian –

maybe

> bisexual (long story there) and have SMA 2. Hobbies/ interests mean

I love

> my computer, my friends, coffee, politics -- but primarily my

gorgeous son

> and the (amazing) honour of being his mother.

>

>

>

> I work as a freelance disability equality trainer and am beginning

to think

> that I need to think about `retiring' as my health is dictating that I

> should work less, which means I keep having to cancel various contracts.

> I'm sure that many of you understand that working on a self employed

basis,

> means that no work = no ££. I'm on my 4th chest infection this

year, which

> apart from the usual annoyance that goes with them, I can't keep up

to date

> with my workload either. I am usually a busy and active person and the

> thought of not working is one I can't get my head around.

>

>

>

> Anyway, it would be nice to get to chat with other SMAers, so I'm sure

> you'll hear more from me ...

>

>

>

> Nat

>

>

>

>

>

>

>

>

>

>

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Hi a,

Great to meet you

N@alie :)

A re-introduction

Date: Saturday, November 15, 2008, 9:04 AM

Hello everyone,

I have been a lurker on this list for many years but now I would like to

become a bit more involved for . So here is a bit of an introduction to me

J

My name is , but please call me Nat, I live in the UK, I’m 43 (still

not sure how that happened!) I have a 3 year old son and a retired

assistance dog who both live with me and I also live with a lesbian couple

who work as my PAs (I also have 4 other PAs). I’m a single lesbian – maybe

bisexual (long story there) and have SMA 2. Hobbies/ interests mean I love

my computer, my friends, coffee, politics -- but primarily my gorgeous son

and the (amazing) honour of being his mother.

I work as a freelance disability equality trainer and am beginning to think

that I need to think about ‘retiring’ as my health is dictating that I

should work less, which means I keep having to cancel various contracts.

I’m sure that many of you understand that working on a self employed basis,

means that no work = no ££. I’m on my 4th chest infection this year, which

apart from the usual annoyance that goes with them, I can’t keep up to date

with my workload either. I am usually a busy and active person and the

thought of not working is one I can’t get my head around.

Anyway, it would be nice to get to chat with other SMAers, so I’m sure

you’ll hear more from me ...

Nat

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Hi Suzanne,

Great to meet you, how old are your children? How do you cope with three -

I find one busy enough!

My sister has type 3 too, she is 41 and can still walk - how does SMA affect

you

N@alie :)

Re: A re-introduction

Hi Nat

My name is Suzanne. I'm 35 have type III and the mother of three

ornery but beautiful children.

On Nov 15, 2008, at 9:04 AM, Meadows wrote:

> Hello everyone,

>

> I have been a lurker on this list for many years but now I would

> like to

> become a bit more involved for . So here is a bit of an introduction

> to me

> J

>

> My name is , but please call me Nat, I live in the UK, I’m 43

> (still

> not sure how that happened!) I have a 3 year old son and a retired

> assistance dog who both live with me and I also live with a lesbian

> couple

> who work as my PAs (I also have 4 other PAs). I’m a single lesbian –

> maybe

> bisexual (long story there) and have SMA 2. Hobbies/ interests mean

> I love

> my computer, my friends, coffee, politics -- but primarily my

> gorgeous son

> and the (amazing) honour of being his mother.

>

> I work as a freelance disability equality trainer and am beginning

> to think

> that I need to think about ‘retiring’ as my health is dictating that I

> should work less, which means I keep having to cancel various

> contracts.

> I’m sure that many of you understand that working on a self employed

> basis,

> means that no work = no ££. I’m on my 4th chest infection this year,

> which

> apart from the usual annoyance that goes with them, I can’t keep up

> to date

> with my workload either. I am usually a busy and active person and the

> thought of not working is one I can’t get my head around.

>

> Anyway, it would be nice to get to chat with other SMAers, so I’m sure

> you’ll hear more from me ...

>

> Nat

>

>

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Hi Camilla,

Great to meet another European SMAer. I am really pleased to meet someone

so close! Where about in Germany do you live? I’ve visited Berlin, Leipzig

and Cologne it is a fabulous country. I am seriously thinking about going

again in 2009, if you don’t mind I might have to ask you a load of questions

when I’m at the planning stage...

With regard to children – it wasn’t til I was in my 30s that I seriously

thought I could have them or want them – the biological clock factor was

what started me down that road – now I’m so glad I did it – I conceived when

I was 39, so there is still time for you!

As for losing strength from being pregnant – I seem to have never regained

the power to sit without support – not that my sitting balance was great

before - now it is nonexistent. Also I have one giant hernia were my

stomach muscle is not able to hold in my intestines. They just rest on my

lap and cause a lot of pain if I’m moved by someone who doesn’t know how to

move me. I was not renowned for my flat stomach before – quite the opposite

really! I also have lost the ability to cough up anything when I have a

chest infection – again something I was not good at before, but now I have

to have assistance to cough all the time. I think that all these were

speeded up by being pregnant, but they could all have been happening anyway

– who knows!

Hope we get to chat more

N@alie :)

From: [mailto: ] On

Behalf Of Camilla

Sent: 16 November 2008 08:31

Subject: Re: A re-introduction

Hi Nat,

welcome! I am Camilla, 37, SMA II, from Germany. Concerning to the

fact that most of the other users live in the USA I think we are

almost neighbors. ;-) Nice to meet you.

What can I tell you about me?

In my spare time I love reading whodunits and listening to

audio-books. I won some prizes by publishing my own short-stories.

Moreover I love cooking, meeting friends for a coffee and rumble about

the city and can phone for hours. I have the most wonderful boyfriend

and really can say I am a happy person and love my life.

I am the chairman's secretary and work part-time in a huge social

network that cares for disabled, old and ill persons in Germany and

South Africa. It is a very fulfilling job and I love it, although

after work I sometimes think it is too hard for my constitution.

Every time I read that one of the SMA-girls gave birth to a child I am

very touched. Surely I want to be a mother (tick tock - the body

clock) but I really am afraid of loosing strength. Did you loose a lot

of power?

Have a nice day

Camilla

>

> Hello everyone,

>

>

>

> I have been a lurker on this list for many years but now I would like to

> become a bit more involved for . So here is a bit of an

introduction to me

> J

>

>

>

> My name is , but please call me Nat, I live in the UK, I'm 43

(still

> not sure how that happened!) I have a 3 year old son and a retired

> assistance dog who both live with me and I also live with a lesbian

couple

> who work as my PAs (I also have 4 other PAs). I'm a single lesbian –

maybe

> bisexual (long story there) and have SMA 2. Hobbies/ interests mean

I love

> my computer, my friends, coffee, politics -- but primarily my

gorgeous son

> and the (amazing) honour of being his mother.

>

>

>

> I work as a freelance disability equality trainer and am beginning

to think

> that I need to think about `retiring' as my health is dictating that I

> should work less, which means I keep having to cancel various contracts.

> I'm sure that many of you understand that working on a self employed

basis,

> means that no work = no ££. I'm on my 4th chest infection this

year, which

> apart from the usual annoyance that goes with them, I can't keep up

to date

> with my workload either. I am usually a busy and active person and the

> thought of not working is one I can't get my head around.

>

>

>

> Anyway, it would be nice to get to chat with other SMAers, so I'm sure

> you'll hear more from me ...

>

>

>

> Nat

>

>

>

>

>

>

>

>

>

>

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I did a degree in politics and then went on to do a post graduate course to

become a counsellor. At the time I really wanted to be a counsellor, but

the course director, in her infinite wisdom thought that someone 'who was as

disabled as me' (her exact words) could not be a counsellor. She put up so

many barriers to my academic and clinical work, that after 6 months, when I

was offered a job as a trainer, I quit. At that point in time there was no

legislation in place to stop her from discriminating (there is now). But

instead I have had a great career working in the disabled people's movement.

So I'm not bitter lol!

I think it great you have plans to share an apartment with a PCA who is also

a friend - it can turn out badly but on the other hand it can turn out

great. The 2 PAs I live with have worked for me in various situations since

1993. (with a few years of them doing other things too) We are more like

family - we have our ups and downs - but my life would not be so outstanding

if it hadn't been for them.

Hope you are still not procrastinating and working hard ! Thanks for

chatting

N@alie :)

From: [mailto: ] On

Behalf Of sweetleo03

Sent: 16 November 2008 01:54

Subject: Re: A re-introduction

After graduation in May I plan on moving to Madison with a friend who

will be starting nursing school next Fall. She is currently one of my

PCA's here in Whitewater and plans on continuing to do most of my

cares once we get our own apartment. I know that sharing an apartment

with a PCA can sometimes turn out badly, but we spend most of our time

together anyway and we get along great so I guess I lucked out! After

6 years of living and attending school here, I'm definitely ready to

move on to " bigger and better " things! I have always loved Madison for

its diversity (being from Wisconsin, there isn't much of that anywhere

but Madison or Milwaukee)and friendly, not-too-big-city atmosphere. I

would love to find a job working on video editing, but with my lack of

" real world experience " , I wouldn't be opposed to starting out

designing t-shirts or window paintings :P What did you study while

going to school?

No virus found in this incoming message.

Checked by AVG - http://www.avg.com

Version: 8.0.175 / Virus Database: 270.9.4/1790 - Release Date: 15/11/2008

09:32

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Nat,

My children are nine,seven,and three. Yes they are a handful but I

have adapted to them and them to me. I don't even notice how my kids

and I have changed to accommodate each other until I babysit my

sisters' children. It then becomes obvious that they have learned to

move around me and vice-versa. I have read some articles about

disabled mothers and parenting none with SMA but it pretty much summed

up the same type scenarios I have come across. I'm currently not

working so I guess that helps as far as energy expenditure. Also, my

husband helps out when he can. Three parents would be great. is

very lucky.

I am still able to walk but it is very limited. Everything can make

walking more difficult. For example, weight gain/diet, my period,

uneven floors etc...........Because of this(and because I have

children to keep up with) I usually use a manual wheelchair outside to

go places,however, I never use a wheelchair inside my home. I can go

up a few stairs with two railings. I cannot get up off the ground

without a piece of furniture. Basically, I am weak from my toes all

the way up. Some of my muscle groups are affected more than others. If

your sister doesn't mind you talking about her how does it affect her?

Not that I want to share SMA with anyone, what is it like having

a sibling with it?

Suzanne

>

> > Hello everyone,

> >

> > I have been a lurker on this list for many years but now I would

> > like to

> > become a bit more involved for . So here is a bit of an introduction

> > to me

> > J

> >

> > My name is , but please call me Nat, I live in the UK, I'm 43

> > (still

> > not sure how that happened!) I have a 3 year old son and a retired

> > assistance dog who both live with me and I also live with a lesbian

> > couple

> > who work as my PAs (I also have 4 other PAs). I'm a single lesbian –

> > maybe

> > bisexual (long story there) and have SMA 2. Hobbies/ interests mean

> > I love

> > my computer, my friends, coffee, politics -- but primarily my

> > gorgeous son

> > and the (amazing) honour of being his mother.

> >

> > I work as a freelance disability equality trainer and am beginning

> > to think

> > that I need to think about `retiring' as my health is dictating that I

> > should work less, which means I keep having to cancel various

> > contracts.

> > I'm sure that many of you understand that working on a self employed

> > basis,

> > means that no work = no ££. I'm on my 4th chest infection this year,

> > which

> > apart from the usual annoyance that goes with them, I can't keep up

> > to date

> > with my workload either. I am usually a busy and active person and the

> > thought of not working is one I can't get my head around.

> >

> > Anyway, it would be nice to get to chat with other SMAers, so I'm sure

> > you'll hear more from me ...

> >

> > Nat

> >

> >

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I have a B.S. in psychology and a Master's in Social Work.  I had various duties

at the hospital I work for and when we moved into a case management model my

experience qualified me to apply for a case manager position.  I've been a CM

since 2000.

L

________________________________

From: <d-kemp@...>

Sent: Saturday, November 15, 2008 8:07:26 PM

Subject: RE: Re: A re-introduction

Lori,

Do you have a medical degree or something? How does one become a case

manager in a hospital?

Kemp

Director, OurGV Rewards

<http://www.ourgvrew ards.com/> http://www.ourgvrew ards.com

Phone: 714-974-5799

Business Phone: 714-974-5693

Cell Phone: 714-244-5920

Phone: 949-579-9465

Email 1: d-kempsbcglobal (DOT) net

Email 2: dkempourgvrewards (DOT) com

<http://www.ourgvmal l.com/djk> banner021.jpg

<http://www.benefitb ar.com/benefitba r/subscribe/ toolbar.php? toolbarId= 1500>

000-toolbar- banner-1

From: @gro ups.com [mailto:@gro ups.com] On

Behalf Of Lori G

Sent: Saturday, November 15, 2008 3:14 PM

@gro ups.com

Subject: Re: Re: A re-introduction

Hi Nat. Glad you are joining in. I am 46 y/o, SMA II, married 17 years

this month, use a motorized chair, have a trach button, and work full-time

as a case manager in a hospital.

Lori

____________ _________ _________ __

From: Meadows <mulberry1104@ .co. uk

<mailto:mulberry110 4%40. co.uk> >

@gro ups.com <mailto:% 40groups. com>

Sent: Saturday, November 15, 2008 2:45:49 PM

Subject: RE: Re: A re-introduction

Hi ,

I understand the need for procrastination, it was something I did a lot of

when I was at uni (though that was a few years ago now!)

What would you like to do when you finish school?

N@alie :)

From: @gro ups.com [mailto:@ gro ups.com] On

Behalf Of sweetleo03

Sent: 15 November 2008 19:40

@gro ups.com

Subject: Re: A re-introduction

Hi Nat! I am also a fellow lurker who generally only puts their 2

cents in when procrastinating homework (like now). I am 23 with type

II, currently going to school at UW-Whitewater (WI) for Multimedia and

Graphic Design. Looking forward to hearing from you more!

No virus found in this incoming message.

Checked by AVG - http://www.avg. com

Version: 8.0.175 / Virus Database: 270.9.4/1790 - Release Date: 15/11/2008

09:32

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Hi Nat,

I live near furt but was born in Berlin. Yes, please, do not mind

to ask me any question when it comes to your visit. Maybe I can help

you to find a wheelchair accessible hotel, ... Maybe we can meet and

have a mug of coffee.

What you told me about loosing strength after birth and the other

consequences frightens me a little. 12 years before I had a bad car

crash and as a consequence lost a lot of strength I never got back.

Loosing even more power is a fearful thought. Well, we will see. :-)

Thanks for your honesty.

Unfortunately I am in a hurry right now, but really would like to

learn more about you.

Best wishes for today and say hello to you little son!

Camilla

> >

> > Hello everyone,

> >

> >

> >

> > I have been a lurker on this list for many years but now I would

like to

> > become a bit more involved for . So here is a bit of an

> introduction to me

> > J

> >

> >

> >

> > My name is , but please call me Nat, I live in the UK, I'm 43

> (still

> > not sure how that happened!) I have a 3 year old son and a retired

> > assistance dog who both live with me and I also live with a lesbian

> couple

> > who work as my PAs (I also have 4 other PAs). I'm a single lesbian –

> maybe

> > bisexual (long story there) and have SMA 2. Hobbies/ interests mean

> I love

> > my computer, my friends, coffee, politics -- but primarily my

> gorgeous son

> > and the (amazing) honour of being his mother.

> >

> >

> >

> > I work as a freelance disability equality trainer and am beginning

> to think

> > that I need to think about `retiring' as my health is dictating that I

> > should work less, which means I keep having to cancel various

contracts.

> > I'm sure that many of you understand that working on a self employed

> basis,

> > means that no work = no ££. I'm on my 4th chest infection this

> year, which

> > apart from the usual annoyance that goes with them, I can't keep up

> to date

> > with my workload either. I am usually a busy and active person and the

> > thought of not working is one I can't get my head around.

> >

> >

> >

> > Anyway, it would be nice to get to chat with other SMAers, so I'm sure

> > you'll hear more from me ...

> >

> >

> >

> > Nat

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

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Hi Nat!

As you have probably noticed, I don’t write here often, and lurk in the

shadows, rather guiltily, most of the time. But I just wanted to say

“hello”, although we have known each other for some time (!), and say that

as I am also in the UK, I would certainly appreciate fellow ‘Europeans’

input on more local issues and as fellowship; personally have felt so alone

(not lonely, I am lucky there) and always end up with a Dr or medical

variant (heh, like replicant perhaps!) who has never heard of SMA, and am

sometimes just too exhausted or ill to go through it all from scratch again.

Bloody numbnut OT’s... (Not) Getting equipment... And I am so sick of, “Is

it MS?” – yes, title, but not diagnosis – but title-wise they always end up

writing ‘Mrs’ anyway, argh!

My eyes have been opened recently as to just how many of us gorgeous

SMA-girls are bi! Wow, is it because we are greedy?!

You know you are always welcome to visit if you’re down this way, we’d love

to see you (and the gorgeous !).

Best love,

From: [mailto: ] On

Behalf Of Meadows

Sent: Saturday, November 15, 2008 2:04 PM

Subject: A re-introduction

Hello everyone,

I have been a lurker on this list for many years but now I would like to

become a bit more involved for . So here is a bit of an introduction to me

J

My name is , but please call me Nat, I live in the UK, I’m 43 (still

not sure how that happened!) I have a 3 year old son and a retired

assistance dog who both live with me and I also live with a lesbian couple

who work as my PAs (I also have 4 other PAs). I’m a single lesbian – maybe

bisexual (long story there) and have SMA 2. Hobbies/ interests mean I love

my computer, my friends, coffee, politics -- but primarily my gorgeous son

and the (amazing) honour of being his mother.

I work as a freelance disability equality trainer and am beginning to think

that I need to think about ‘retiring’ as my health is dictating that I

should work less, which means I keep having to cancel various contracts.

I’m sure that many of you understand that working on a self employed basis,

means that no work = no ££. I’m on my 4th chest infection this year, which

apart from the usual annoyance that goes with them, I can’t keep up to date

with my workload either. I am usually a busy and active person and the

thought of not working is one I can’t get my head around.

Anyway, it would be nice to get to chat with other SMAers, so I’m sure

you’ll hear more from me ...

Nat

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, wow -- Hello Mrs!

Really great to hear from you – it is absolutely great (and right) to chat

on this group with you – let’s do it more?

Seriously thinking of holidaying in Longleat in January – not too far from

you is it J

Keep in touch

Lots of love

and

xxx xxxx xxx

From: [mailto: ] On

Behalf Of Geary

Sent: 17 November 2008 15:22

Subject: RE: A re-introduction

Hi Nat!

As you have probably noticed, I don’t write here often, and lurk in the

shadows, rather guiltily, most of the time. But I just wanted to say

“hello”, although we have known each other for some time (!), and say that

as I am also in the UK, I would certainly appreciate fellow ‘Europeans’

input on more local issues and as fellowship; personally have felt so alone

(not lonely, I am lucky there) and always end up with a Dr or medical

variant (heh, like replicant perhaps!) who has never heard of SMA, and am

sometimes just too exhausted or ill to go through it all from scratch again.

Bloody numbnut OT’s... (Not) Getting equipment... And I am so sick of, “Is

it MS?” – yes, title, but not diagnosis – but title-wise they always end up

writing ‘Mrs’ anyway, argh!

My eyes have been opened recently as to just how many of us gorgeous

SMA-girls are bi! Wow, is it because we are greedy?!

You know you are always welcome to visit if you’re down this way, we’d love

to see you (and the gorgeous !).

Best love,

From: <mailto:%40>

[mailto: <mailto:%40> ]

On

Behalf Of Meadows

Sent: Saturday, November 15, 2008 2:04 PM

<mailto:%40>

Subject: A re-introduction

Hello everyone,

I have been a lurker on this list for many years but now I would like to

become a bit more involved for . So here is a bit of an introduction to me

J

My name is , but please call me Nat, I live in the UK, I’m 43 (still

not sure how that happened!) I have a 3 year old son and a retired

assistance dog who both live with me and I also live with a lesbian couple

who work as my PAs (I also have 4 other PAs). I’m a single lesbian – maybe

bisexual (long story there) and have SMA 2. Hobbies/ interests mean I love

my computer, my friends, coffee, politics -- but primarily my gorgeous son

and the (amazing) honour of being his mother.

I work as a freelance disability equality trainer and am beginning to think

that I need to think about ‘retiring’ as my health is dictating that I

should work less, which means I keep having to cancel various contracts.

I’m sure that many of you understand that working on a self employed basis,

means that no work = no ££. I’m on my 4th chest infection this year, which

apart from the usual annoyance that goes with them, I can’t keep up to date

with my workload either. I am usually a busy and active person and the

thought of not working is one I can’t get my head around.

Anyway, it would be nice to get to chat with other SMAers, so I’m sure

you’ll hear more from me ...

Nat

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