Re: Not totally cf related/just talking

[Guest guest]

Patty, I am sorry you are having a bad day. Like you said at least you

know what Tyler's problems are and can treat them now.

Do your kids like to make noise? Get out the pots and pans and the wooden

spoons and get in a circle and make some noise. It will be fun and it will

release some tension and get out some anger for you. If it is to loud, put

some cotton in your ears first. This could be a regular ritual and the kids

might think it is fun.

I don't have any answers about when it will be better. I just know that you

have your hands full and your broad shoulders are trying to do it all. You

can't by yourself!!! If I was close I would bring my wooden spoon and come

over. You are strong but sometimes you just can't be strong any more. This

is where the spoons and pan comes in, you can yell and scream and cry if you

want too. If the kids want to know why you are crying tell them you hit

your thumb. HaHA

I will tell you that as your kids get older that it does get a little

easier. But usually there is always something to replace whatever the

problem was before.

Stand Strong, lock yourself in the bathroom for an hour when your husband

gets home.

I will pray for a guardian angel to help remove the other stresses of the

day. Hugs and Prayers,

Tina W., mother of Steph, 18yo wcf

Not totally cf related/just talking

Well today(already) is another one of those days.I am only writing

because i dont know of another people so compassionate and

understanding.

Just when i thought i had enough with cf and now tylers cough being

attrocious enough that theyll more than likely need to put him back

on ivs, he was diagnosed today with adhd.Thats ok too, i can handle

it right?Weve been through worse together before and maybe now with

an actual diagnosis we can make strides.I come home, within 10 min my

4 yr old has pulled the firealarm(again), my neighbor whom i very

close to tells me my son cant come on her porch anymore, and when i

call my hubbys cell to get some kind of emotional support for the

days horrific events he proceeds to tell me hes at the local bar

drinking with his workpal.Ive had enough.Im so stressed out i dont

know where to turn, with the exception of ya ll in hopes that maybe

someone here can understand the pressure all of this is like.I flip

through memories in my life searching for an answer as to why this is

all happening and all at once at that.I find nothing...no logical

explanation as to why cf and the other issues has been welcomed into

my home and turned my life upside down.

This is one of those days i wished i didnt have to talk to 3 drs

offices to get a handle on tylers health....the fighting for answers

and solutions, the wondering if it will all go away, or at least get

better.Outside of the fact that this disease is deteriorating not

only my sons life but the quality of his life, the next worse thing

is the absolute guilt it has instilled in me.I hate these days, and

yet they are so fond of me, coming more frequently, with every ounce

of energy these days have i feel they are making efforts at bringing

me down, and even that itself is a fight.

This disease has isolated me from normalcies of life or what my

interpretation of those normalcies are, and the fact that i feel that

way magnifies my guilt more.

I always try to pray for others when i know that theyre struggliing,

and others' challenges act a s encouragement for me to go on...to

continue the fight for so many that have suffered the emotional

effects of this never ending card we've all been dealt.I ask that for

those of you that this is applicable that you please pray for me

too.My only wish is to find comfort with the situations that arise,

the courage and strength to face every dibilitating emotional factor

i must embrace, and that somewhere, sometime, help will finally be

available to all of those that are victimized by this disease.

While tears have rolled down my cheeks through the majority of this

post i assure you i am strong and with the support of so many on here

i know ill be just fine...tomorrow is another day, and thank heavens

i always have the florida sun warming my soul.Thank you for letting

me vent.

Patty, mo to Tyler8 wcf & adhd:(, austin, 4wocf, and selena,3wocf

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

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.

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

_____

[Guest guest]

May I join Tina in her suggestions and her encouragement to Patty?

Love to Patty and to Tina, n Rojas

Not totally cf related/just talking

Well today(already) is another one of those days.I am only writing

because i dont know of another people so compassionate and

understanding.

Just when i thought i had enough with cf and now tylers cough being

attrocious enough that theyll more than likely need to put him back

on ivs, he was diagnosed today with adhd.Thats ok too, i can handle

it right?Weve been through worse together before and maybe now with

an actual diagnosis we can make strides.I come home, within 10 min my

4 yr old has pulled the firealarm(again), my neighbor whom i very

close to tells me my son cant come on her porch anymore, and when i

call my hubbys cell to get some kind of emotional support for the

days horrific events he proceeds to tell me hes at the local bar

drinking with his workpal.Ive had enough.Im so stressed out i dont

know where to turn, with the exception of ya ll in hopes that maybe

someone here can understand the pressure all of this is like.I flip

through memories in my life searching for an answer as to why this is

all happening and all at once at that.I find nothing...no logical

explanation as to why cf and the other issues has been welcomed into

my home and turned my life upside down.

This is one of those days i wished i didnt have to talk to 3 drs

offices to get a handle on tylers health....the fighting for answers

and solutions, the wondering if it will all go away, or at least get

better.Outside of the fact that this disease is deteriorating not

only my sons life but the quality of his life, the next worse thing

is the absolute guilt it has instilled in me.I hate these days, and

yet they are so fond of me, coming more frequently, with every ounce

of energy these days have i feel they are making efforts at bringing

me down, and even that itself is a fight.

This disease has isolated me from normalcies of life or what my

interpretation of those normalcies are, and the fact that i feel that

way magnifies my guilt more.

I always try to pray for others when i know that theyre struggliing,

and others' challenges act a s encouragement for me to go on...to

continue the fight for so many that have suffered the emotional

effects of this never ending card we've all been dealt.I ask that for

those of you that this is applicable that you please pray for me

too.My only wish is to find comfort with the situations that arise,

the courage and strength to face every dibilitating emotional factor

i must embrace, and that somewhere, sometime, help will finally be

available to all of those that are victimized by this disease.

While tears have rolled down my cheeks through the majority of this

post i assure you i am strong and with the support of so many on here

i know ill be just fine...tomorrow is another day, and thank heavens

i always have the florida sun warming my soul.Thank you for letting

me vent.

Patty, mo to Tyler8 wcf & adhd:(, austin, 4wocf, and selena,3wocf

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

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.

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

_____

[Guest guest]

Patty, for heaven's sake before they start urging you to put him on ADHD

medication, clear it with the doctor (because of his nebulised meds), and

make sure that you are not adding uppers that he does not need! I know;

my cfer was hyperactive also! Cheers! n Rojas

Not totally cf related/just talking

Well today(already) is another one of those days.I am only writing

because i dont know of another people so compassionate and

understanding.

Just when i thought i had enough with cf and now tylers cough being

attrocious enough that theyll more than likely need to put him back

on ivs, he was diagnosed today with adhd.Thats ok too, i can handle

it right?Weve been through worse together before and maybe now with

an actual diagnosis we can make strides.I come home, within 10 min my

4 yr old has pulled the firealarm(again), my neighbor whom i very

close to tells me my son cant come on her porch anymore, and when i

call my hubbys cell to get some kind of emotional support for the

days horrific events he proceeds to tell me hes at the local bar

drinking with his workpal.Ive had enough.Im so stressed out i dont

know where to turn, with the exception of ya ll in hopes that maybe

someone here can understand the pressure all of this is like.I flip

through memories in my life searching for an answer as to why this is

all happening and all at once at that.I find nothing...no logical

explanation as to why cf and the other issues has been welcomed into

my home and turned my life upside down.

This is one of those days i wished i didnt have to talk to 3 drs

offices to get a handle on tylers health....the fighting for answers

and solutions, the wondering if it will all go away, or at least get

better.Outside of the fact that this disease is deteriorating not

only my sons life but the quality of his life, the next worse thing

is the absolute guilt it has instilled in me.I hate these days, and

yet they are so fond of me, coming more frequently, with every ounce

of energy these days have i feel they are making efforts at bringing

me down, and even that itself is a fight.

This disease has isolated me from normalcies of life or what my

interpretation of those normalcies are, and the fact that i feel that

way magnifies my guilt more.

I always try to pray for others when i know that theyre struggliing,

and others' challenges act a s encouragement for me to go on...to

continue the fight for so many that have suffered the emotional

effects of this never ending card we've all been dealt.I ask that for

those of you that this is applicable that you please pray for me

too.My only wish is to find comfort with the situations that arise,

the courage and strength to face every dibilitating emotional factor

i must embrace, and that somewhere, sometime, help will finally be

available to all of those that are victimized by this disease.

While tears have rolled down my cheeks through the majority of this

post i assure you i am strong and with the support of so many on here

i know ill be just fine...tomorrow is another day, and thank heavens

i always have the florida sun warming my soul.Thank you for letting

me vent.

Patty, mo to Tyler8 wcf & adhd:(, austin, 4wocf, and selena,3wocf

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

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.

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

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

[Guest guest]

Dear Patty,

Like everybody else here, I have very few words to give. Boy, be

glad you are in Florida and not here in Memphis, it is 30 degrees and

the highest today was a whopping 32 degrees.

Only when the kids are a little older and more self-sufficient, will

life be a little easier, mine are a little older than yours and gosh

I feel like moving and not giving them my new address, :-)

Well, chin up, put the kids to bed and get a funny movie, best

medicine is to laugh or get a funny book, it helps me tremendously to

get a funny movie and laugh, laugh, laugh.

Best wishes,

> Well today(already) is another one of those days.I am only writing

> because i dont know of another people so compassionate and

> understanding.

> Just when i thought i had enough with cf and now tylers cough being

> attrocious enough that theyll more than likely need to put him back

> on ivs, he was diagnosed today with adhd.Thats ok too, i can handle

> it right?Weve been through worse together before and maybe now with

> an actual diagnosis we can make strides.I come home, within 10 min

my

> 4 yr old has pulled the firealarm(again), my neighbor whom i very

> close to tells me my son cant come on her porch anymore, and when i

> call my hubbys cell to get some kind of emotional support for the

> days horrific events he proceeds to tell me hes at the local bar

> drinking with his workpal.Ive had enough.Im so stressed out i dont

> know where to turn, with the exception of ya ll in hopes that maybe

> someone here can understand the pressure all of this is like.I flip

> through memories in my life searching for an answer as to why this

is

> all happening and all at once at that.I find nothing...no logical

> explanation as to why cf and the other issues has been welcomed

into

> my home and turned my life upside down.

> This is one of those days i wished i didnt have to talk to 3 drs

> offices to get a handle on tylers health....the fighting for

answers

> and solutions, the wondering if it will all go away, or at least

get

> better.Outside of the fact that this disease is deteriorating not

> only my sons life but the quality of his life, the next worse thing

> is the absolute guilt it has instilled in me.I hate these days, and

> yet they are so fond of me, coming more frequently, with every

ounce

> of energy these days have i feel they are making efforts at

bringing

> me down, and even that itself is a fight.

> This disease has isolated me from normalcies of life or what my

> interpretation of those normalcies are, and the fact that i feel

that

> way magnifies my guilt more.

> I always try to pray for others when i know that theyre

struggliing,

> and others' challenges act a s encouragement for me to go on...to

> continue the fight for so many that have suffered the emotional

> effects of this never ending card we've all been dealt.I ask that

for

> those of you that this is applicable that you please pray for me

> too.My only wish is to find comfort with the situations that arise,

> the courage and strength to face every dibilitating emotional

factor

> i must embrace, and that somewhere, sometime, help will finally be

> available to all of those that are victimized by this disease.

> While tears have rolled down my cheeks through the majority of this

> post i assure you i am strong and with the support of so many on

here

> i know ill be just fine...tomorrow is another day, and thank

heavens

> i always have the florida sun warming my soul.Thank you for letting

> me vent.

>

> Patty, mo to Tyler8 wcf & adhd:(, austin, 4wocf, and selena,3wocf

[Guest guest]

Patty,

I am sorry that you must deal with all the issues at home, while your

husband sets at the bar enjoying himself. I'm sure that made the

day's events seem even worse. I hope that tomorrow is a much better

day.

Love,

Gale

> Well today(already) is another one of those days.I am only writing

> because i dont know of another people so compassionate and

> understanding.

> Just when i thought i had enough with cf and now tylers cough being

> attrocious enough that theyll more than likely need to put him back

> on ivs, he was diagnosed today with adhd.Thats ok too, i can handle

> it right?Weve been through worse together before and maybe now with

> an actual diagnosis we can make strides.I come home, within 10 min

my

> 4 yr old has pulled the firealarm(again), my neighbor whom i very

> close to tells me my son cant come on her porch anymore, and when i

> call my hubbys cell to get some kind of emotional support for the

> days horrific events he proceeds to tell me hes at the local bar

> drinking with his workpal.Ive had enough.Im so stressed out i dont

> know where to turn, with the exception of ya ll in hopes that maybe

> someone here can understand the pressure all of this is like.I flip

> through memories in my life searching for an answer as to why this

is

> all happening and all at once at that.I find nothing...no logical

> explanation as to why cf and the other issues has been welcomed

into

> my home and turned my life upside down.

> This is one of those days i wished i didnt have to talk to 3 drs

> offices to get a handle on tylers health....the fighting for

answers

> and solutions, the wondering if it will all go away, or at least

get

> better.Outside of the fact that this disease is deteriorating not

> only my sons life but the quality of his life, the next worse thing

> is the absolute guilt it has instilled in me.I hate these days, and

> yet they are so fond of me, coming more frequently, with every

ounce

> of energy these days have i feel they are making efforts at

bringing

> me down, and even that itself is a fight.

> This disease has isolated me from normalcies of life or what my

> interpretation of those normalcies are, and the fact that i feel

that

> way magnifies my guilt more.

> I always try to pray for others when i know that theyre

struggliing,

> and others' challenges act a s encouragement for me to go on...to

> continue the fight for so many that have suffered the emotional

> effects of this never ending card we've all been dealt.I ask that

for

> those of you that this is applicable that you please pray for me

> too.My only wish is to find comfort with the situations that arise,

> the courage and strength to face every dibilitating emotional

factor

> i must embrace, and that somewhere, sometime, help will finally be

> available to all of those that are victimized by this disease.

> While tears have rolled down my cheeks through the majority of this

> post i assure you i am strong and with the support of so many on

here

> i know ill be just fine...tomorrow is another day, and thank

heavens

> i always have the florida sun warming my soul.Thank you for letting

> me vent.

>

> Patty, mo to Tyler8 wcf & adhd:(, austin, 4wocf, and selena,3wocf