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Helli! i¹m so glad you are on the mend. When you are up to it i¹d like to

hear about your experience. My thoughts and prayers are with you!

Love, nicole

On 8/23/02 1:23 PM, " Helen Hellicopter " <hellicopter@...> wrote:

> Hello Everyone,

> I know I don't post a great deal, but I like to read your mails! I just

> wanted to say I have come back to the group since having spinal fusion!

> A lot of people thought I was a bit mad as I am 24 and this operation isn't

> usually performed on Adults with SMA. 3 operations later I am making a slow

> but steady recovery, and it has been a steep learning curve! If I can ever

> offer any advice to anyone else considering this in the future, especially

> older candidates then I don't mind sharing my experiences!

> I wanted to thank Tufty, Rebbecca, and for your get well wishes and

> cards!

> It is good to be back...

> Helli

> xx

>

>

> _________________________________________________________________

> Chat with friends online, try MSN Messenger: http://messenger.msn.com

>

>

>

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Hi :) I am upto sharing my experiences anytime...as I an getting better all

the time! Everyday brings something new but I am working through everything

just fine! I feel strong in mind which I think is the most important thing

of all when going through something like this. If you have any specific

questions just gimme a shout!

Helli

x

>From: <nicoleroberts@...>

>Reply-

> < >

>Subject: Re: Hello All...

>Date: Fri, 23 Aug 2002 23:43:18 -0500

>

>Helli! i¹m so glad you are on the mend. When you are up to it i¹d like to

>hear about your experience. My thoughts and prayers are with you!

>

>Love, nicole

>

>

>On 8/23/02 1:23 PM, " Helen Hellicopter " <hellicopter@...> wrote:

>

> > Hello Everyone,

> > I know I don't post a great deal, but I like to read your mails! I just

> > wanted to say I have come back to the group since having spinal fusion!

> > A lot of people thought I was a bit mad as I am 24 and this operation

>isn't

> > usually performed on Adults with SMA. 3 operations later I am making a

>slow

> > but steady recovery, and it has been a steep learning curve! If I can

>ever

> > offer any advice to anyone else considering this in the future,

>especially

> > older candidates then I don't mind sharing my experiences!

> > I wanted to thank Tufty, Rebbecca, and for your get well wishes

>and

> > cards!

> > It is good to be back...

> > Helli

> > xx

> >

> >

> > _________________________________________________________________

> > Chat with friends online, try MSN Messenger: http://messenger.msn.com

> >

> >

> >

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Hi helli!

I'm just wondering what exactly happened and why you ended up having 3

surgeries, and how are you feeling different since the fusion...

Love,

N

On 8/24/02 8:38 AM, " Helen Hellicopter " <hellicopter@...> wrote:

> Hi :) I am upto sharing my experiences anytime...as I an getting better all

> the time! Everyday brings something new but I am working through everything

> just fine! I feel strong in mind which I think is the most important thing

> of all when going through something like this. If you have any specific

> questions just gimme a shout!

> Helli

> x

>

>

>> From: <nicoleroberts@...>

>> Reply-

>> < >

>> Subject: Re: Hello All...

>> Date: Fri, 23 Aug 2002 23:43:18 -0500

>>

>> Helli! i¹m so glad you are on the mend. When you are up to it i¹d like to

>> hear about your experience. My thoughts and prayers are with you!

>>

>> Love, nicole

>>

>>

>> On 8/23/02 1:23 PM, " Helen Hellicopter " <hellicopter@...> wrote:

>>

>>> Hello Everyone,

>>> I know I don't post a great deal, but I like to read your mails! I just

>>> wanted to say I have come back to the group since having spinal fusion!

>>> A lot of people thought I was a bit mad as I am 24 and this operation

>> isn't

>>> usually performed on Adults with SMA. 3 operations later I am making a

>> slow

>>> but steady recovery, and it has been a steep learning curve! If I can

>> ever

>>> offer any advice to anyone else considering this in the future,

>> especially

>>> older candidates then I don't mind sharing my experiences!

>>> I wanted to thank Tufty, Rebbecca, and for your get well wishes

>> and

>>> cards!

>>> It is good to be back...

>>> Helli

>>> xx

>>>

>>>

>>> _________________________________________________________________

>>> Chat with friends online, try MSN Messenger: http://messenger.msn.com

>>>

>>>

>>>

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Hi ! :)

I had to have 2 stage surgery due to my age (24). As my spine was already

fused I had to have anterior and posterier release where they made my spine

unstable in order to put the rods and bones grafts in! I had my 12th rib

removed but I was lucky enough to have the majority of the work done below

my diaphram. Sometimes in adults they have to take your diaphram down and

collapse your lungs so they can see more of your spine, but my scoliosis was

much worse in the lumber region so they were able to get a good enough

correction without doing that. My third operation was due to an infection in

my wound so they opened me up again to cut away the infection, this proved

to be more painful than the spinal surgery! They didn't know why I got an

infection, but I spent so much time in bed and a lot of pressure was on my

wound as I had to lie completely flat for about 8 weeks in all! My surgen

suggested that my size might have had something to do with the slow healing,

but I am not hugely overweight (size 16 uk). I think you definitely heal

better when you are younger as I have had a couple of operations before that

left considerable scars and they had no problems healing! My back is still

being dressed everyday 15 weeks later, but it is getting better now!

It is hard to describe how the surgery has made me feel! I feel like I have

been on a rollarcoaster emotionally and physically as there were good and

bad days. I look so much better now and I am 4inches taller, it was like

waking up and seeing someone else as it has changed my shape completely!

When I first came out of hospital I was quite distressed because I had been

quite active before, and then I found I couldn't do a thing for myself..but

that is coming back now! I have kept focused and determined and I knew it

would be harder being older and going through this! I think you know your

own limits though and I am still pushing myself everyday to get back to how

I used to be to the best of my ability. It is very weird not being able to

bend your upper body but I am even slowly getting used to that now my

balance is coming back! I am fairly pleased with the outcome of all of this,

but because I am still in pain and discomfort it is wearing emotionally. My

recovery has been slowed by my wound breaking down and a lot of my pain

isn't from my back but from my hips. After over 9 weeks in bed my hips have

rotated a little and they hurt a lot. I have however gone from being able

to sit in my chair from 2 hours to 12 hours in 4 weeks so I am making good

progress now! I had this operation because my scoliosis was very slowly

getting worse and my doctors hadn't forseen that happening. Last year my

breathing got worse by 5% so I was then given a choice! I was referred for

surgery and was told this was my one and only chance of this operation due

to my age. My surgen had not performed this operation on anyone with SMA at

my age and had his reservations. He said on more than one occation that

this is as major as it comes and in every operation my life was in the

balance. He had booked me a bed in intensive care that I never used and I

think he has even been surprised by my sheer determination and attitude

throughout! I knew what I wanted to achieve, and that was to secure a future

for myself and take the doubt out of my mind that my scoliosis could shorten

my life. I wanted to take control of my own destiny and not have it

dictated to me. I think if I had my time over I still would have made this

decision. I hope that answers everything for you but if you have anymore

questions don't hesitate to ask!

Take care

Helli

:)

>From: <nicoleroberts@...>

>Reply-

> < >

>Subject: Re: Hello All...

>Date: Sat, 24 Aug 2002 16:43:48 -0500

>

>Hi helli!

>

>I'm just wondering what exactly happened and why you ended up having 3

>surgeries, and how are you feeling different since the fusion...

>

>Love,

>N

>

>

>On 8/24/02 8:38 AM, " Helen Hellicopter " <hellicopter@...> wrote:

>

> > Hi :) I am upto sharing my experiences anytime...as I an getting better

>all

> > the time! Everyday brings something new but I am working through

>everything

> > just fine! I feel strong in mind which I think is the most important

>thing

> > of all when going through something like this. If you have any specific

> > questions just gimme a shout!

> > Helli

> > x

> >

> >

> >> From: <nicoleroberts@...>

> >> Reply-

> >> < >

> >> Subject: Re: Hello All...

> >> Date: Fri, 23 Aug 2002 23:43:18 -0500

> >>

> >> Helli! i¹m so glad you are on the mend. When you are up to it i¹d

>like to

> >> hear about your experience. My thoughts and prayers are with you!

> >>

> >> Love, nicole

> >>

> >>

> >> On 8/23/02 1:23 PM, " Helen Hellicopter " <hellicopter@...>

>wrote:

> >>

> >>> Hello Everyone,

> >>> I know I don't post a great deal, but I like to read your mails! I

>just

> >>> wanted to say I have come back to the group since having spinal

>fusion!

> >>> A lot of people thought I was a bit mad as I am 24 and this operation

> >> isn't

> >>> usually performed on Adults with SMA. 3 operations later I am making

>a

> >> slow

> >>> but steady recovery, and it has been a steep learning curve! If I can

> >> ever

> >>> offer any advice to anyone else considering this in the future,

> >> especially

> >>> older candidates then I don't mind sharing my experiences!

> >>> I wanted to thank Tufty, Rebbecca, and for your get well wishes

> >> and

> >>> cards!

> >>> It is good to be back...

> >>> Helli

> >>> xx

> >>>

> >>>

> >>> _________________________________________________________________

> >>> Chat with friends online, try MSN Messenger: http://messenger.msn.com

> >>>

> >>>

> >>>

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In a message dated 8/25/02 8:07:54 AM Eastern Daylight Time,

hellicopter@... writes:

> I had to have 2 stage surgery due to my age (24).

Hi Helli,

Before the end of the yr, I WILL also undergo Spinal Fusion I'm 19! I've

been trying so hard to have this surgery done, my parents took me way to NJ

to consult w/ a surgeon who didn't feel comfortable w/ peforming such a " big

surgery " on me. I just cried when he told me they didn't think it was a good

idea. So finally, I've found an excellent team of docs who I feel even more

comfortable with. These guys are blunt but positive about the whole thing,

which I love! They say they have an excellent intensivists team and I should

be sitting up two days after surgery. They've said the hardest part will be

getting off the vent, but the good thing is I sleep on BiPap. To go from vent

straight to Bipap might not be so hard. This surgery is something I need to

improve my quality of life and self image. I know for a fact it wont be easy

at all, but it'll be well worth it in the end. I feel confident I'm making a

good choice, I cant imagine what it feels like to actually sit straight! I

cant wait! Helli have any advice?

~s, GRADUATE of Class 2002~

" Challenges are what make life interesting; overcoming them is what makes l

ife meaningful. "

- J. Marine

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Hi :)

Well I all I can offer you are my own experiences, and the way I prepared

for surgery was to eat well to help build my immune system, take vitamin

supplements, rest a lot, and try and be as fit as you can be. As I knew for

about a year I used that time to try and get myself to a point where I was

the best I could be in both body and mind. However having gone through it

now I don't think you can really prepare yourself fully for every

eventuality, you just have to be strong as and when you face things. I too

was told I would be sitting up after 2 days, but you have to consider that

might not happen. I wasn't prepared for 9 weeks in bed and I think you

should be realistic about every possible outcome. They also told me that I

might end up on a ventilator but that never happened, however I don't have

any assistance with my breathing usually.

It will be your strength and determination which will dictate the final

outcome and you seem very clear in your mind that you want to go through

with this. You have to believe that everything will be ok or I don't you

would go through it. I think the mind is a very powerful thing and your

state of mind will help you through this! I wish you the very best for your

surgeries and would love to hear from you again!

Helli

:)

>From: MsBYGthoughts@...

>Reply-

>

>Subject: Re: Hello All...

>Date: Mon, 26 Aug 2002 00:54:48 EDT

>

>In a message dated 8/25/02 8:07:54 AM Eastern Daylight Time,

>hellicopter@... writes:

>

>

> > I had to have 2 stage surgery due to my age (24).

>

>Hi Helli,

>Before the end of the yr, I WILL also undergo Spinal Fusion I'm 19! I've

>been trying so hard to have this surgery done, my parents took me way to NJ

>to consult w/ a surgeon who didn't feel comfortable w/ peforming such a

> " big

>surgery " on me. I just cried when he told me they didn't think it was a

>good

>idea. So finally, I've found an excellent team of docs who I feel even

>more

>comfortable with. These guys are blunt but positive about the whole thing,

>which I love! They say they have an excellent intensivists team and I

>should

>be sitting up two days after surgery. They've said the hardest part will

>be

>getting off the vent, but the good thing is I sleep on BiPap. To go from

>vent

>straight to Bipap might not be so hard. This surgery is something I need

>to

>improve my quality of life and self image. I know for a fact it wont be

>easy

>at all, but it'll be well worth it in the end. I feel confident I'm making

>a

>good choice, I cant imagine what it feels like to actually sit straight! I

>cant wait! Helli have any advice?

>~s, GRADUATE of Class 2002~

>

> " Challenges are what make life interesting; overcoming them is what makes l

>ife meaningful. "

>- J. Marine

>

>

>

>

>

>

>

>

>

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  • 1 year later...

, Welcome to the group! Wow it sure sounds like you have been bitten

by the soaping bug. It is sooo easily addicting. Dont hesitate to ask any

questions...Chances are someone has the answer. This is a very informal and

freindly group.

I am one of the ones that live near Rochester. Actually about 20 minutes

east of it. I am a CPer at heart but I like to play with MP quite a bit.

Been making soap and other stufs for about 5 and a half years or so.

Welcome!

Shaye

The Soap Shack

www.mysoapshack.com

Hello all...

I just wanted to introduce myself so you arent too awful suprized when

you see the new soaper askin' silly questions.

My name is Norton and I just started soaping (CP) about a month

ago when friend gave us some that he and his wife had made. I

immediately took interest in how it was done and did some research on

the net.

Now my wife can't stop me from tearin' up the kitchen and trying new

recipes! I also recently started double boiler HP recipes and am very

interested in learning all I can about it (since the soap is ready so

much sooner).

I am in the lower Finger Lakes region of NY (Elmira to be exact) and

wondered if anyone here is close (Corning, Ithaca, Horseheads,

Binghamton, Rochester, etc.)

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Nope!

(Waving!!!) I am north of Binghamton and drive to Endicott every day.

There are a few more in the Binghamton area, they just haven't replied yet.

Lorrie B.

In a message dated 9/4/2003 9:34:00 PM Eastern Standard Time,

bfrog@... writes:

> Still looks like I

> am alone in the southern tier :(

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Yeah, you're about an hour South of me but I believe we have a few on the list

from Ithaca and Binghamton. Maybe they'll chime in. :-)

Katy

Re: Hello all...

Well hello Katy and Peggy! Thanks for replying. Still looks like I

am alone in the southern tier :( but I have lotsa folks here :)

> Welcome, !

>

> Katy (Naples, NY)

>

>

>

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Ummm... I am starting to feel like " the husband at the tupperware

party " . Are there any men in the group? LOL

BTW... just finished a batch of Mint-Tea Fresh last night and it's my

favorite soap that I have made. I'll get some photos and post them soon.

> (waving) !!! hello

>

> i am in the binghamton area but i mostly make candles ...some soap and

> learning more and more

>

> so nice to meet you

>

> patti

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Hi Lorrie,

You must be one of the soapers that buys from Amrex Chemical Co. I

called down to find out about sodium hydroxide and the lady I spoke to

said there were a few ladies in the area who bought lye for soap making.

I am trying to get down there in the next few weeks to get some.. it's

ridiculous paying $3.99/18oz when I can take a short drive and get it

for $0.75/lb!

> Nope!

> (Waving!!!) I am north of Binghamton and drive to Endicott every day.

> There are a few more in the Binghamton area, they just haven't

replied yet.

> Lorrie B.

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hehe, there are a few guys here. Bob (Soapnazi), Bill (Saratoga Scents),

, ( are you still on this list?). Love to see the photos of

your Mint Tea soap! Sounds delish!

Shaye - back to plugging away on the holiday soaps.

Re: Hello all...

Ummm... I am starting to feel like " the husband at the tupperware

party " . Are there any men in the group? LOL

BTW... just finished a batch of Mint-Tea Fresh last night and it's my

favorite soap that I have made. I'll get some photos and post them soon.

> (waving) !!! hello

>

> i am in the binghamton area but i mostly make candles ...some soap and

> learning more and more

>

> so nice to meet you

>

> patti

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Hi

And welcome to the group.... This is a great group of people . you will like

it here ...

I live south of Rochester and very close to Letchworth State Park .

Kim Fuoco ..

-- Hello all...

I just wanted to introduce myself so you arent too awful suprized when

you see the new soaper askin' silly questions.

My name is Norton and I just started soaping (CP) about a month

ago when friend gave us some that he and his wife had made. I

immediately took interest in how it was done and did some research on

the net.

Now my wife can't stop me from tearin' up the kitchen and trying new

recipes! I also recently started double boiler HP recipes and am very

interested in learning all I can about it (since the soap is ready so

much sooner).

I am in the lower Finger Lakes region of NY (Elmira to be exact) and

wondered if anyone here is close (Corning, Ithaca, Horseheads,

Binghamton, Rochester, etc.)

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  • 2 years later...

Congratulations on your BFL start, Jen.

About the fruit...how are you with smoothies? I use a straw if it's

not my favorite flavor. There are great recipes using protein powders

and fruit.

Good luck as you continue BFL.

M.

> I have always had texture issues with food, especially fruit, but I

> have learned to get beyond this. I have been working hard and feel

> like I am at a point to move forward!

> Jen

>

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Welcome Jen!

BFL is a wonderful program. My advice to you is to plan all your meals the

night before, including times and write everything down. If you need

recipes, Eating for Life is a great cookbook. My dh & I have loved almost

every recipe in it.

I have the same texture issues with fruit. Any tips?

You CAN do this! Keep us posted on your progress and feel free to post any

questions.

G.

On 1/16/06, Ferguson <jen3_98@...> wrote:

>

> I am on the road to a great transformation! I am beginning my 1st

> challenge today!

>

> This is a big step for me as I don't always make the best food

> choices. I went to the grocery store today and never left the organic

> food section.....and, my husband never knew it! I made dinner tonight

> consisting of organic items and told him after he finished his meal.

> What he doesn't know won't hurt him...will it?!

>

> I have always had texture issues with food, especially fruit, but I

> have learned to get beyond this. I have been working hard and feel

> like I am at a point to move forward!

>

> I am so excited to get this underway. I have almost finished the BFL

> book and am on board at this point! I am sooo ready for the change!

>

> Jen

>

>

>

>

>

>

>

>

>

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Ah, the texture issues....

I have a real good friend at work who eats wonderfully. I have

learned from her that eating is not about what tastes the best, but

what is best for your body.

I think that has been a big obstacle for me and now that I have

hurdled that, I think I can get beyond the textures.

My daughter loves brocolli and I am not a fan of it...I have noticed

she is picking up on my likes and dislikes. I am now having to suck

it up and move on. Eat it because it is good for me and good for

her.

> >

> > I am on the road to a great transformation! I am beginning my 1st

> > challenge today!

> >

> > This is a big step for me as I don't always make the best food

> > choices. I went to the grocery store today and never left the

organic

> > food section.....and, my husband never knew it! I made dinner

tonight

> > consisting of organic items and told him after he finished his

meal.

> > What he doesn't know won't hurt him...will it?!

> >

> > I have always had texture issues with food, especially fruit, but

I

> > have learned to get beyond this. I have been working hard and

feel

> > like I am at a point to move forward!

> >

> > I am so excited to get this underway. I have almost finished the

BFL

> > book and am on board at this point! I am sooo ready for the

change!

> >

> > Jen

> >

> >

> >

> >

> >

> >

> >

> >

> >

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  • 7 months later...

Suzy wrote:

>

> Hi, I just joined your group upon the recommendation of a friend Sue,

who joined a while ago. She said the group was full of information on

> candida over growth. Looking forward to healing with you all.

==>That's wonderful you've joined us Suzy. Your journey towards total

health begins by reading and learning. Read and enjoy! We're here to

answer any questions and to support you through the rough spots!

Cheers, Bee

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  • 3 months later...

To, Jw_Todd, keep your chin up. My 28 y/o son was diagnosed with tm a little over 7 months ago and he's recovering. Doesn't use the wheel chair anymore...And, he's starting to walk around without the walker...The next step for him is to get this braces off that he has from the knee down..We're all very encouraged with his progress...He's in a pt program twice a week...They really know what they are doing and he's getting results...Do all you can to stay as active as possible and seek out pt people who know what they are doing....Duncan, Maine

Hello all...

I just found this group and thought I should introduce myself. Myname is Jim, 38, from Ontario, Canada.I'm kind of experiencing a double whammy here. I was diagnosed withtransverse myelitis last July and am now having to move around ina wheelchair. How much I'll be able to recover is still up in theair. And that recovery is hampered by some sort of middle-ear problemthat's causing dizziness and nausea. I'm waiting for an appointmentwith an ear/nose/throat specialist to see what's going on there, butI'm worried that it could be Meniere's Disease.Anyway, I'm glad I found this little group, and also that some of youhere are also dealing with TM. It helps to know that I'm not alone indealing with it.Thank you for being here,Jim

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