trying to cope/life as a parent

[Guest guest]

Every one has dreams and wishes. Some wish for money, new cars, a house, a

fantastic career. There are those who wish they could sit at home and just

vegetate. Others want to win the lottery or get a big inheritance. We'd

like to have all of this, sure.

But the one thing that EVERYONE on this list can agree on is the one thing

that truly means the MOST........I wish there was a CURE. My husband and I

sat on the couch one day and we were discussing things we wanted. All of a

sudden we both said, at the same time, " I wish didn't have CF. "

That is my WISH.......and will always be my wish until that day when a CURE

is here!!!!!!!!!!!!!!!!!

I really feel alone as many of you do....I can't even talk to any of my

Danville friends or community ...even our Dr. is starting to pull back.

Maybe not, but that how it's all beginning to feel. I'm so lonely aside from

my kids and husband that sometimes I just want to sit back and cry. But I

know I have to be strong. Who knows? Maybe it's all in my head. I just

feel isolated from everything around me.

I guess you can say that after 6 years of dealing with CF that I'm now at the

angry and jealous part.

from PA

[Guest guest]

,

If you ever want to talk off list please email me.

Deana

Mom to 12 ncf and 6 wcf

lkbmkbmom@...

trying to cope/life as a parent

Every one has dreams and wishes. Some wish for money, new cars, a house, a

fantastic career. There are those who wish they could sit at home and just

vegetate. Others want to win the lottery or get a big inheritance. We'd

like to have all of this, sure.

But the one thing that EVERYONE on this list can agree on is the one thing

that truly means the MOST........I wish there was a CURE. My husband and I

sat on the couch one day and we were discussing things we wanted. All of a

sudden we both said, at the same time, " I wish didn't have CF. "

That is my WISH.......and will always be my wish until that day when a CURE

is here!!!!!!!!!!!!!!!!!

I really feel alone as many of you do....I can't even talk to any of my

Danville friends or community ...even our Dr. is starting to pull back.

Maybe not, but that how it's all beginning to feel. I'm so lonely aside from

my kids and husband that sometimes I just want to sit back and cry. But I

know I have to be strong. Who knows? Maybe it's all in my head. I just

feel isolated from everything around me.

I guess you can say that after 6 years of dealing with CF that I'm now at the

angry and jealous part.

from PA

[Guest guest]

Sara,

I want my son to have a happy mom also....non angry and jealous....thats why

we need to stay strong.

from PA

[Guest guest]

Hi ,

I know how you feel. Since Zach's diagnosis I find myself irritated

by such small things and I can't enjoy the activities I used to

love. Everything seems so trivial compared to the importance of

finding a cure for my baby! When I talk to my friends I feel like I

am either speaking a foreign language or like I am living on another

planet. I can't relate to other people and their non-cf lives. The

worst part is I know this is not rational or appropriate behavior.

Our friends are wonderful and try to be understanding but they just

don't get it! I hope with time I will adjust and become more

patient with everyone. I want Zach to have a happy mommy, not an

angry frustrated one.

Sara mommy to Zach 14 months wcf

> Every one has dreams and wishes. Some wish for money, new cars, a

house, a

> fantastic career. There are those who wish they could sit at home

and just

> vegetate. Others want to win the lottery or get a big

inheritance. We'd

> like to have all of this, sure.

>

> But the one thing that EVERYONE on this list can agree on is the

one thing

> that truly means the MOST........I wish there was a CURE. My

husband and I

> sat on the couch one day and we were discussing things we wanted.

All of a

> sudden we both said, at the same time, " I wish didn't have

CF. "

>

> That is my WISH.......and will always be my wish until that day

when a CURE

> is here!!!!!!!!!!!!!!!!!

>

> I really feel alone as many of you do....I can't even talk to any

of my

> Danville friends or community ...even our Dr. is starting to pull

back.

> Maybe not, but that how it's all beginning to feel. I'm so lonely

aside from

> my kids and husband that sometimes I just want to sit back and

cry. But I

> know I have to be strong. Who knows? Maybe it's all in my head.

I just

> feel isolated from everything around me.

>

> I guess you can say that after 6 years of dealing with CF that I'm

now at the

> angry and jealous part.

>

> from PA

>

>

>

>

[Guest guest]

I totally agree about wishing for a cure. Sometimes, I just can't stop

hoping for it. Next to that, the single one thing I want is to stop

feeling tired all the time. I so hate night feeds and the lack of time I

always seem to have. After that, a job for my husband would be good ...

he is being laid off on June 6th. I can also relate to the lonely

part, who has time to call people and it's too hard to visit when your

daughter has to be constantly hand feed all the time. Why does life

always have to be so complicated?

- mom to Emma 2 1/2 years w/cf and Isabelle 4 1/2 years old wo/cf

On Fri, 4 Apr 2003 12:01:56 EST ck570@... writes:

> Every one has dreams and wishes. Some wish for money, new cars, a

> house, a

> fantastic career. There are those who wish they could sit at home

> and just

> vegetate. Others want to win the lottery or get a big inheritance.

> We'd

> like to have all of this, sure.

>

> But the one thing that EVERYONE on this list can agree on is the one

> thing

> that truly means the MOST........I wish there was a CURE. My

> husband and I

> sat on the couch one day and we were discussing things we wanted.

> All of a

> sudden we both said, at the same time, " I wish didn't have

> CF. "

>

> That is my WISH.......and will always be my wish until that day when

> a CURE

> is here!!!!!!!!!!!!!!!!!

>

> I really feel alone as many of you do....I can't even talk to any of

> my

> Danville friends or community ...even our Dr. is starting to pull

> back.

> Maybe not, but that how it's all beginning to feel. I'm so lonely

> aside from

> my kids and husband that sometimes I just want to sit back and cry.

> But I

> know I have to be strong. Who knows? Maybe it's all in my head. I

> just

> feel isolated from everything around me.

>

> I guess you can say that after 6 years of dealing with CF that I'm

> now at the

> angry and jealous part.

>

> from PA

>

>

>

>

[Guest guest]

,

You sound like you need a nap.. I wish I could come babysit for you.......

hang in there.

Mom to KM 8 wocf, and Paige 3 wcf, and author of " Juggling CF. A Health Journal "

Re: trying to cope/life as a parent

I totally agree about wishing for a cure. Sometimes, I just can't stop

hoping for it. Next to that, the single one thing I want is to stop

feeling tired all the time. I so hate night feeds and the lack of time I

always seem to have. After that, a job for my husband would be good ...

he is being laid off on June 6th. I can also relate to the lonely

part, who has time to call people and it's too hard to visit when your

daughter has to be constantly hand feed all the time. Why does life

always have to be so complicated?

- mom to Emma 2 1/2 years w/cf and Isabelle 4 1/2 years old wo/cf

On Fri, 4 Apr 2003 12:01:56 EST ck570@... writes:

> Every one has dreams and wishes. Some wish for money, new cars, a

> house, a

> fantastic career. There are those who wish they could sit at home

> and just

> vegetate. Others want to win the lottery or get a big inheritance.

> We'd

> like to have all of this, sure.

>

> But the one thing that EVERYONE on this list can agree on is the one

> thing

> that truly means the MOST........I wish there was a CURE. My

> husband and I

> sat on the couch one day and we were discussing things we wanted.

> All of a

> sudden we both said, at the same time, " I wish didn't have

> CF. "

>

> That is my WISH.......and will always be my wish until that day when

> a CURE

> is here!!!!!!!!!!!!!!!!!

>

> I really feel alone as many of you do....I can't even talk to any of

> my

> Danville friends or community ...even our Dr. is starting to pull

> back.

> Maybe not, but that how it's all beginning to feel. I'm so lonely

> aside from

> my kids and husband that sometimes I just want to sit back and cry.

> But I

> know I have to be strong. Who knows? Maybe it's all in my head. I

> just

> feel isolated from everything around me.

>

> I guess you can say that after 6 years of dealing with CF that I'm

> now at the

> angry and jealous part.

>

> from PA

>

>

>

>

[Guest guest]

Gosh, its not you!!! I just wrote a friend who'se son has CP/Autism the same

thing. That even though I have tons of friends with children with

disabilities. None have CF and unless you live with CF, the treatments, the

fear of each cold and what it brings.....you don't know.

I take things one day at a time but sometimes its one scary day at a time!

The worse sound is waking to someone coughing - and praying it doesn't

escalate. One of the hardest things I am coming across now is my kids coming

to the realization that CF is for life and can be life threatening. Sorry

to be a downer...I too am isolated. That song ....everyone says I am the

life of the party cause I tell a joke or two... TRACKS OF MY TEARS...was

written for me. I don't fit it with the school yard moms either...

I guess I will form my own clique...I keep eating and gaining weight. I

tried on a bathing suit for Florida and felt that the fat woman in the

circus. Help me find a new way to cope............

Rosemary from New York with 3 children with CF -

they are 12.5, 10, 6......

I coined the phrase " BREATHE DAMMIT " ; we have a dog we named -are you ready

for this - TOBI after their medication!!! At least it wasn't albuterol or

Coly...

Rosemary from New York with 3 children with CF -

they are 12.5, 10, 6......

I coined the phrase " BREATHE DAMMIT " ; we have a dog we named -are you ready

for this - TOBI after their medication!!! At least it wasn't albuterol or

Coly...

[Guest guest]

It is very hard. Very isolating. I do not fit in with any cliques in the

schoolyard as well. I have found myself constantly worrying. My son is 6

and he always asks if his sister is going to die. He is extremely over

protective of her. I have also had a huge weight gain since my daughter was

diagnosed. All I do is eat...eat....eat. When you find an answer, please

pass it on to me too!! Keep your chin up. You are doing a great job!!

Jenna, mother to Shamus 6yo/ncf, a 4yo/ncf (but wants to have " CVS "

like her sister and do therapy to her) and Hannah 18months wcf

[Guest guest]

Hi Jenna,

I can really relate. All I seem to do lately is

eat, eat, eat as well. I've gained so much weight

I weigh more now than I did when I was 6 months

pregnant with my twins - and I was overweight then!

I just joined Weight Watchers Online because I didn't

think I could commit to weekly meetings. It's

impossible to find sitters who are able or willing

to do tube feedings and respiratory treatments.

Until the twins are old enough to be responsible for

their own treatments I feel like a prisoner to their

schedules. I do have a nurse, but I tend to use

that time just to catch up on sleep I'm deprived

of at night. Just to show you how bad my coping

skills are lately, while I was signing up at

Weight Watchers I was wolfing down a ziploc bag of

homemade chocolate chip cookies - with nuts. Now

I'm uncomfortably full and have heartburn. Serves

me right!

I think we just need to start by forgiving ourselves

for our weaknesses, then make little changes - like

reaching out to our friends and taking better care

of ourselves. We can't change the fact that our

children have this demanding and devastating disease,

but we can change how we cope with it - by being

just a little kinder to ourselves on a day by day,

sometimes minute by minute, basis.

Good luck and good thoughts,

C

Mommy to Mick and Alli, 3 yo twins wcf

--- maunsellje@... wrote:

> It is very hard. Very isolating. I do not fit in

> with any cliques in the

> schoolyard as well. I have found myself constantly

> worrying. My son is 6

> and he always asks if his sister is going to die.

> He is extremely over

> protective of her. I have also had a huge weight

> gain since my daughter was

> diagnosed. All I do is eat...eat....eat. When you

> find an answer, please

> pass it on to me too!! Keep your chin up. You are

> doing a great job!!

>

> Jenna, mother to Shamus 6yo/ncf, a 4yo/ncf

> (but wants to have " CVS "

> like her sister and do therapy to her) and Hannah

> 18months wcf

>

>

> [Non-text portions of this message have been

> removed]

>

>

[Guest guest]

Does anyone else feel this way? or is it just me?

, hi mine name is and i have three daughters ages 4,5, and 6. My 6

and 4 yr old have CF. I know how you feel, it is very depressing at times I

have recently been put on medication for stress and musles spasms caused by

stress. I guess i have finally let it get to me. I try to be strong but it

is hard. My husband doesn't like to talk about it, so I hold it all in. I

just want to go to the top of a high mountain and let it all out! Scream to

the top of my lungs and maybe i'd feel better. haha! I am here if you ever

need anyone to talk to, maybe we can help each other.

Does anyone else feel this way? or is it just me?

[Guest guest]

Yes, I often feel the same way. I have found sometimes just releasing all

that pent up emotion (a good cry in the bath) (a tearful walk in the woods)

helps to cope. Its sort of like letting a bit of air out of a overfilled

tire. The stress doesn't completelly go away but it makes the ride a little

more comfortable. If you have some close friends to talk to or even a

therapist, I've found that very useful at times.

As my girlfriend says, you wake up every morning with a base-line of

stress, so if things get to you, thats completely acceptable.

Hope this helps.

(mom to 8wcf, Noah 11wocf)

on 4/5/03 11:05 AM, sandrakkm@... at sandrakkm@... wrote:

> Does anyone else feel this way? or is it just me?

>

> , hi mine name is and i have three daughters ages 4,5, and 6. My 6

> and 4 yr old have CF. I know how you feel, it is very depressing at times I

> have recently been put on medication for stress and musles spasms caused by

> stress. I guess i have finally let it get to me. I try to be strong but it

> is hard. My husband doesn't like to talk about it, so I hold it all in. I

> just want to go to the top of a high mountain and let it all out! Scream to

> the top of my lungs and maybe i'd feel better. haha! I am here if you ever

> need anyone to talk to, maybe we can help each other.

> Does anyone else feel this way? or is it just me?

>

>

>

[Guest guest]

,

When you find the mountain, can I hitch a ride ;o) I even go halves or goodness

I pay all the gas $ if you drive!!

Deana

----- Original Message -----

From: sandrakkm@...

, hi mine name is and i have three daughters ages 4,5, and 6. My 6

and 4 yr old have CF. I know how you feel, it is very depressing at times I

have recently been put on medication for stress and musles spasms caused by

stress. I guess i have finally let it get to me. I try to be strong but it

is hard. My husband doesn't like to talk about it, so I hold it all in. I

just want to go to the top of a high mountain and let it all out! Scream to

the top of my lungs and maybe i'd feel better. haha! I am here if you ever

need anyone to talk to, maybe we can help each other.

Does anyone else feel this way? or is it just me?

[Guest guest]

Gosh, can I ever relate. I love living in a small town but they do

isolate you....especially when it comes to stuff like this. Anger,

frustration, self-doubt...I live with them everyday. They are fast

becoming my only emotions. I do have wonderful friends..but like all

have said, their children are healthy and they don't have a clue what

it's like having a child with cf. I have been having gall bladder

attacks lately (they think it is gallstones). The doc asked me if I

had been under any undo stress lately. I laughed until I cried...of

course then I couldn't stop crying and my doc thinks i have finally

gone insane. I mentioned therapy to my husband, ha ha...didn't think

highly of it but at this point he can kiss my butt. You gone on

though, try to be the strongest person you can. I feel if the

disease breaks me it will break my son. I hope in some way he can

siphon some of my strength. He hasn't been eating...no coughing

though...we seemed to have gotten rid of his cold. He scares me to

death. I just want to shove food down his throat. I had a nice

crying jag last nite...seemed to help some. It seems that is all I

do lately. For now it helps to know I am not alone....for so long I

felt like I was doing this all by myself (hubby works constantly,

bills to pay). The lot of you are an inspiration to me. A cure

would be wonderful. Maybe one of our kids will become a scientist

and find one. We could all use a miracle.

Farrah, mommy to Charlie, 3 yo w/cf, and 9 mos. no/cf

[Guest guest]

,

I think everyone feels this way at times. You really have your hands full

and have a lot to scream about. We can't hear you but you can cry and

scream all you want here, we'll " listen: " and comiserate. My children are

grown now, is 19 w/cf and my son Nick will be 21 on Monday, but no CF

fortunately. I remember when they were little and I needed a place like

this but it wasn't there. We went to CF parents support group all the time

then. We really needed a place to vent. Now you have us so go for it. A

real person is better but then again we are here all the time, and you don't

need an appt.

love and hugs,

M

[Guest guest]

In a message dated 4/5/2003 11:06:38 AM Central Daylight Time,

sandrakkm@... writes:

> , hi mine name is and i have three daughters ages 4,5, and 6. My

> 6

> and 4 yr old have CF. I know how you feel, it is very depressing at times

> I

> have recently been put on medication for stress and musles spasms caused by

>

> stress. I guess i have finally let it get to me. I try to be strong but it

>

> is hard. My husband doesn't like to talk about it, so I hold it all in. I

>

> just want to go to the top of a high mountain and let it all out! Scream to

>

> the top of my lungs and maybe i'd feel better. haha! I am here if you ever

>

> need anyone to talk to, maybe we can help each other.

> Does anyone else feel this way? or is it just me?

If you do know of someone I want to know what there secret is!!! DebA

[Guest guest]

In a message dated 4/5/2003 3:42:09 PM Central Daylight Time,

joeysangel25@... writes:

> but at this point he can kiss my butt.

YOU GO GIRL!!!! LOL!!!

[Guest guest]

Deana, sure you and anyone else.

[Guest guest]

Farrah, I know how you feel, at least we have each other, it's just a shame

we can't see each other and be one anothers support group, but for now this

will do.

[Guest guest]

I would sure like to meet you someday. I live in Ohio, but my job

requires that I travel to NY frequently. I don't have a child with

CF. I have a grand daughter with CF. It is heart wrenching. It

can't imagine the pain that my daughter lives with. It's good for

me to read how all of the parents on this list are coping. It helps

me to understand what my daughter must be feeling. I stopped by her

house tonight to check on Abby (my grand daughter). Toni seemed a

little down. Abby has a cold and I know that brings a lot of fears

back to the surface.

I hope that you ave a great time with Mickey and Minnie.

Gale

> Gosh, its not you!!! I just wrote a friend who'se son has

CP/Autism the same

> thing. That even though I have tons of friends with children with

> disabilities. None have CF and unless you live with CF, the

treatments, the

> fear of each cold and what it brings.....you don't know.

>

> I take things one day at a time but sometimes its one scary day at

a time!

> The worse sound is waking to someone coughing - and praying it

doesn't

> escalate. One of the hardest things I am coming across now is my

kids coming

> to the realization that CF is for life and can be life

threatening. Sorry

> to be a downer...I too am isolated. That song ....everyone says I

am the

> life of the party cause I tell a joke or two... TRACKS OF MY

TEARS...was

> written for me. I don't fit it with the school yard moms either...

> I guess I will form my own clique...I keep eating and gaining

weight. I

> tried on a bathing suit for Florida and felt that the fat woman in

the

> circus. Help me find a new way to cope............

>

>

>

> Rosemary from New York with 3 children with CF -

> they are 12.5, 10, 6......

> I coined the phrase " BREATHE DAMMIT " ; we have a dog we named -are

you ready

> for this - TOBI after their medication!!! At least it wasn't

albuterol or

> Coly...

>

> Rosemary from New York with 3 children with CF -

> they are 12.5, 10, 6......

> I coined the phrase " BREATHE DAMMIT " ; we have a dog we named -are

you ready

> for this - TOBI after their medication!!! At least it wasn't

albuterol or

> Coly...

>

>

>