Re: My new life.

January 8, 2004

Dear NATALIA,

THAT WAS SUCH A LOVELY POST. THE TRUTH FOR YOU & MANY OTHERS.

I am so sorry your having this hard time at this age....but, you are dealing

with it & it WILL get better. Perhaps----hopefully , your TX will come

sooner then you think. I know that then , you WILL breath easier again.

Perhaps RUN up those steps. Your post brings truth for some along with a

positive outlook . THANK YOU from me...my granddaughter is 20 & she too is

still VERY active..........We never know what is around that corner-----WITH

OR WITHOUT CF---- But, your lovely post, gives us the chance to THINK about

it & appreciate what we have & remain hopeful for all good things to work

around the bad. Bless you .

By the way, may we have the address for you there. I do think you gave

before, but I am sure some would like it again. I would.

I hope today is a day you will be as charming & positive as when you wrote

this post!!

LOVE & HUGS,

GrandmomBEV

My new life.

Two months ago I was at the gym with my brother followed by a shopping

trip with my mom. We worked out and I did really well. I was on IV

fighting something but really it was just a cough. The IV in my hand

bothered me. I felt different and that my freedom was being taken away

from me. (if I only knew then) What I did not think about was that I

was walking at any pace that I wanted to without problems breathing,

and without a thought about it. I was a MILD CF case. I hurried out

of the gym after the work out since I had to meet my mom up-town, so I

sped down the stairs to the subway without a thought. But I remember

how fast I did it. How fast I sped in and out, how fast I changed into

my clothes, how fast I put on my make-up and my stilettos (since I

never used to wear flat shoes, only high heels) and got to the place

that I met my mom. Today, I walked up and down the hospital hallway

faithfully holding my oxygen. My chest hurts, even when I want to

handle the pain, I simply CANNOT take a deep breath. My lungs don't

want to work.

Today I walked alone for the first time. I went downstairs to look

around the gift-shop. It took me awhile. But that's fine. It was in

the elevator that I saw my reflection. What happened to me? I thought.

Why can't I breathe, why so suddenly. I was so well, and now I can't

imagine not having the oxygen on my face. When I try it, not using the

oxygen, the air is hot, shallow, the air itself seems to want to hurt

me. Each time I hope that something has changed.

So can I call this my life? My new life? Or is this a stage. I

thought about this last night. It's unsafe that I call this a phase,

since I know it will change only marginally. But I don't want to get

down on the situation. I need to stay level-headed I tell myself. the

truth is that I feel that this is my new life. And now that we are

waiting for transplant stuff to move forward and that this is going to

be fairly swift, I feel that this is gods way of getting me ready. I

am finally the CF patient that I was not all my life. I respect the

disease. How hard it is, and how it can cripple. Until now, I did

not get what the big deal was. I was well enough not to get it. I

enjoyed a great standard of living. I had choices. And I guess that's

what it's about. Having choices. Today I feel I have few. I don't

even have the choice to be tired and give up even for a day. The cost

of the following day would be too much.

I don't like my new life, yet I feel privileged to have lived it, to be

living it. How I see the world now is the way the world should be seen

I think.

What I wish. Well, first thing in the morning I cry sometimes since I

think everything is back to normal. I have 10 seconds every morning

right when I wake up, that I think I am in my condo, in my own home and

that I am normal. That this was all a bad dream. When I sober up I

just wish that I could breathe. Back to the point in my CF that I

could breathe. As the day progresses I wish things like good blood

sugars, and a good post or an email from a friend. Long term I wish

that I battle this gracefully. It's not enough to go through this.

The more gracefully it's done the more benefit you will get from it.

And that I get my new lungs within the next year and a half and that

these give me new life. Even if it's only for a few years, I need to

feel what it's like to breathe easy. And then there are things that I

want to do. (my older brother) and I are going to do everything

we've wanted to. I also am going to find love and get married. That

is what I wish long term.

Natalia

24 w CF

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

The opinions and information exchanged on this list should IN NO WAY

be construed as medical advice.

PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS.

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

January 8, 2004

Natalia,

My wish... That you wake up in your condo very soon and that things

get easier for you. That you get your new lungs and do the things

that you and have planned. We need more " 's " . We could all

use one. He is a real blessing. I know that he doesn't think so,

but he is.

Oh, and about the love... You've already found a lot of it right

here!

Thinking af you and wishing you a good day!

Gale

> Two months ago I was at the gym with my brother followed by a

shopping

> trip with my mom. We worked out and I did really well. I was on

IV

> fighting something but really it was just a cough. The IV in my

hand

> bothered me. I felt different and that my freedom was being taken

away

> from me. (if I only knew then) What I did not think about was that

I

> was walking at any pace that I wanted to without problems

breathing,

> and without a thought about it. I was a MILD CF case. I hurried

out

> of the gym after the work out since I had to meet my mom up-town,

so I

> sped down the stairs to the subway without a thought. But I

remember

> how fast I did it. How fast I sped in and out, how fast I changed

into

> my clothes, how fast I put on my make-up and my stilettos (since I

> never used to wear flat shoes, only high heels) and got to the

place

> that I met my mom. Today, I walked up and down the hospital

hallway

> faithfully holding my oxygen. My chest hurts, even when I want to

> handle the pain, I simply CANNOT take a deep breath. My lungs

don't

> want to work.

> Today I walked alone for the first time. I went downstairs to look

> around the gift-shop. It took me awhile. But that's fine. It was

in

> the elevator that I saw my reflection. What happened to me? I

thought.

> Why can't I breathe, why so suddenly. I was so well, and now I

can't

> imagine not having the oxygen on my face. When I try it, not using

the

> oxygen, the air is hot, shallow, the air itself seems to want to

hurt

> me. Each time I hope that something has changed.

> So can I call this my life? My new life? Or is this a stage. I

> thought about this last night. It's unsafe that I call this a

phase,

> since I know it will change only marginally. But I don't want to

get

> down on the situation. I need to stay level-headed I tell myself.

the

> truth is that I feel that this is my new life. And now that we are

> waiting for transplant stuff to move forward and that this is going

to

> be fairly swift, I feel that this is gods way of getting me ready.

I

> am finally the CF patient that I was not all my life. I respect

the

> disease. How hard it is, and how it can cripple. Until now, I

did

> not get what the big deal was. I was well enough not to get it. I

> enjoyed a great standard of living. I had choices. And I guess

that's

> what it's about. Having choices. Today I feel I have few. I

don't

> even have the choice to be tired and give up even for a day. The

cost

> of the following day would be too much.

> I don't like my new life, yet I feel privileged to have lived it,

to be

> living it. How I see the world now is the way the world should be

seen

> I think.

> What I wish. Well, first thing in the morning I cry sometimes

since I

> think everything is back to normal. I have 10 seconds every

morning

> right when I wake up, that I think I am in my condo, in my own home

and

> that I am normal. That this was all a bad dream. When I sober up

I

> just wish that I could breathe. Back to the point in my CF that I

> could breathe. As the day progresses I wish things like good blood

> sugars, and a good post or an email from a friend. Long term I

wish

> that I battle this gracefully. It's not enough to go through

this.

> The more gracefully it's done the more benefit you will get from

it.

> And that I get my new lungs within the next year and a half and

that

> these give me new life. Even if it's only for a few years, I need

to

> feel what it's like to breathe easy. And then there are things

that I

> want to do. (my older brother) and I are going to do

everything

> we've wanted to. I also am going to find love and get married.

That

> is what I wish long term.

>

> Natalia

> 24 w CF

January 8, 2004

YES. I was sorry I didn't mention this wonderful man --JOHN in my last

post. I am sure he is a terrific guy. Your parents have to be wonderful as

well For you two to have such a wonderful bond & so much love for each other

& your parents.....They have loved you VERY much. It is a beautiful family

.. God Has blessed you-----even with the CF. You will be taken care of & then

be able to care for others again

MUCH love, Many hugs, oodles of prayers (oops:)

GrandmomBEV

Re: Re: My new life.

If you guys met you would die. He's this tall, blond guy - really

smart, he's an engineer, that is good looking and perhaps the most

sensitive person that anyone has ever met. He would carry me around if

he could. In Cayman we would swim out far in to the sea, and then i

would hold onto his back so that we could get back. I got tired easily

and it was a long swim. And not for a second was I worried. I knew he

would take care of me. He's doing that now more than ever. He

probably makes me feel the safest. Moreso than even my mom or dad.

Though and I have amazing parents.

On Thursday, January 8, 2004, at 07:21 AM, danieleverettharris wrote:

> Natalia,

>

> My wish... That you wake up in your condo very soon and that things

> get easier for you. That you get your new lungs and do the things

> that you and have planned. We need more " 's " . We could all

> use one. He is a real blessing. I know that he doesn't think so,

> but he is.

>

> Oh, and about the love... You've already found a lot of it right

> here!

>

> Thinking af you and wishing you a good day!

> Gale

>

> > Two months ago I was at the gym with my brother followed by a

> shopping

> > trip with my mom. We worked out and I did really well. I was on

> IV

> > fighting something but really it was just a cough. The IV in my

> hand

> > bothered me. I felt different and that my freedom was being taken

> away

> > from me. (if I only knew then) What I did not think about was that

> I

> > was walking at any pace that I wanted to without problems

> breathing,

> > and without a thought about it. I was a MILD CF case. I hurried

> out

> > of the gym after the work out since I had to meet my mom up-town,

> so I

> > sped down the stairs to the subway without a thought. But I

> remember

> > how fast I did it. How fast I sped in and out, how fast I changed

> into

> > my clothes, how fast I put on my make-up and my stilettos (since I

> > never used to wear flat shoes, only high heels) and got to the

> place

> > that I met my mom. Today, I walked up and down the hospital

> hallway

> > faithfully holding my oxygen. My chest hurts, even when I want to

> > handle the pain, I simply CANNOT take a deep breath. My lungs

> don't

> > want to work.

> > Today I walked alone for the first time. I went downstairs to look

> > around the gift-shop. It took me awhile. But that's fine. It was

> in

> > the elevator that I saw my reflection. What happened to me? I

> thought.

> > Why can't I breathe, why so suddenly. I was so well, and now I

> can't

> > imagine not having the oxygen on my face. When I try it, not using

> the

> > oxygen, the air is hot, shallow, the air itself seems to want to

> hurt

> > me. Each time I hope that something has changed.

> > So can I call this my life? My new life? Or is this a stage. I

> > thought about this last night. It's unsafe that I call this a

> phase,

> > since I know it will change only marginally. But I don't want to

> get

> > down on the situation. I need to stay level-headed I tell myself.

> the

> > truth is that I feel that this is my new life. And now that we are

> > waiting for transplant stuff to move forward and that this is going

> to

> > be fairly swift, I feel that this is gods way of getting me ready.

> I

> > am finally the CF patient that I was not all my life. I respect

> the

> > disease. How hard it is, and how it can cripple. Until now, I

> did

> > not get what the big deal was. I was well enough not to get it. I

> > enjoyed a great standard of living. I had choices. And I guess

> that's

> > what it's about. Having choices. Today I feel I have few. I

> don't

> > even have the choice to be tired and give up even for a day. The

> cost

> > of the following day would be too much.

> > I don't like my new life, yet I feel privileged to have lived it,

> to be

> > living it. How I see the world now is the way the world should be

> seen

> > I think.

> > What I wish. Well, first thing in the morning I cry sometimes

> since I

> > think everything is back to normal. I have 10 seconds every

> morning

> > right when I wake up, that I think I am in my condo, in my own home

> and

> > that I am normal. That this was all a bad dream. When I sober up

> I

> > just wish that I could breathe. Back to the point in my CF that I

> > could breathe. As the day progresses I wish things like good blood

> > sugars, and a good post or an email from a friend. Long term I

> wish

> > that I battle this gracefully. It's not enough to go through

> this.

> > The more gracefully it's done the more benefit you will get from

> it.

> > And that I get my new lungs within the next year and a half and

> that

> > these give me new life. Even if it's only for a few years, I need

> to

> > feel what it's like to breathe easy. And then there are things

> that I

> > want to do. (my older brother) and I are going to do

> everything

> > we've wanted to. I also am going to find love and get married.

> That

> > is what I wish long term.

> >

> > Natalia

> > 24 w CF

>

> -------------------------------------------

> The opinions and information exchanged on this list should IN NO WAY

> be construed as medical advice.

>

> PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

> TREATMENTS.

>

> ------------------------------------

>

<image.tiff>

>

January 8, 2004