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I would love to hear your philosophy too...you can provide so much insight

that can help us deal with our children and what THEY have to go through. My

daughter (13)...constantly throws in my face....picture with the arm

flailing........... " you don't know what its like to have CF....you don't have to

do the

medicine.......... " ........she has a flair for drama and drives her point home

quite well.

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In a message dated 12/1/2003 8:38:58 PM Central Standard Time,

ROSEMARY3FOR3wCF@... writes:

I would love to hear your philosophy too...you can provide so much insight

that can help us deal with our children and what THEY have to go through. My

daughter (13)...constantly throws in my face....picture with the arm

flailing........... " you don't know what its like to have CF....you don't have

to do the

medicine.......... " ........she has a flair for drama and drives her point

home

quite well.

Oh ya Rosemary my 11 year old is the same way!!! It's called puberty!!!! And

just think I have two more to go!!!! I don't think I am going to make it!!!

Deb A

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Natalia,

Thank you so much for your philosophy. I forwarded to my daughter Steph and

she printed it off to read. Also, thank you for sending her an email. I

think you might be hearing from her. She was so surprised when she read

your philosophy and realized that someone else felt the same as she did.

Thank you so much. I hope you will be feeling better soon.

Tina W., mother of Steph, 18yo wcf

Re: NATALIA

I would love to hear your philosophy too...you can provide so much insight

that can help us deal with our children and what THEY have to go through.

My

daughter (13)...constantly throws in my face....picture with the arm

flailing........... " you don't know what its like to have CF....you don't

have to do the

medicine.......... " ........she has a flair for drama and drives her point

home

quite well.

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In a message dated 12/1/2003 10:14:23 PM Eastern Standard Time,

gdattig5@... writes:

> I don't think I am going to make it!!!

> Deb A

>

I hope you get used to doors slamming, the mean look and the SIGH..........oh

brother...puberty and CF don't mix!!!!!!!!!!

Rosemary in NY with 3 children (13, 11 and 7)

with CF. I have a dog named TOBI and have

coined the phrase " BREATHE DAMMIT "

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In a message dated 12/2/2003 3:56:59 PM Central Standard Time,

ROSEMARY3FOR3wCF@... writes:

> I don't think I am going to make it!!!

> Deb A

>

I hope you get used to doors slamming, the mean look and the SIGH..........oh

brother...puberty and CF don't mix!!!!!!!!!!

Rosemary in NY with 3 children (13, 11 and 7)

with CF. I have a dog named TOBI and have

coined the phrase " BREATHE DAMMIT "

Oh ya I get the door slamming, dirty looks, and the signing but what I hate

the most is the talking back and making sure she gets the last word it

RRRRRRRRRRRR I hate this the most!!!!!!! And remember she is only 11 I can't

image

what it will be like when she is 13 OOOOHHHHH MMMMY GGGGGGGOOOODDDDD I AM NOT

GOING TO MAKE IT!!!!!!! HELP ME THROUGH THIS!!!!!! Deb A

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hang in there!! I wish I could tell you something magic to help you.

All I can say is be strong.

On Tuesday, December 2, 2003, at 04:12 PM, ROSEMARY3FOR3wCF@...

wrote:

> In a message dated 12/1/2003 10:14:23 PM Eastern Standard Time,

> gdattig5@... writes:

>

> > I don't think I am going to make it!!!

> > Deb A

> >

>

> I hope you get used to doors slamming, the mean look and the

> SIGH..........oh

> brother...puberty and CF don't mix!!!!!!!!!!

> Rosemary in NY with 3 children (13, 11 and 7)

> with CF.  I have a dog named TOBI and have

> coined the phrase " BREATHE DAMMIT "

>

>

>

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Deb, I feel for you here. I remember me at 13. And, yes CF in

particular does not mix with puberty!!! Keep strong!!

On Tuesday, December 2, 2003, at 08:57 PM, gdattig5@... wrote:

> In a message dated 12/2/2003 3:56:59 PM Central Standard Time,

> ROSEMARY3FOR3wCF@... writes:

>

> > I don't think I am going to make it!!!

> > Deb A

> >

>

> I hope you get used to doors slamming, the mean look and the

> SIGH..........oh

> brother...puberty and CF don't mix!!!!!!!!!!

> Rosemary in NY with 3 children (13, 11 and 7)

> with CF.  I have a dog named TOBI and have

> coined the phrase " BREATHE DAMMIT "

> Oh ya I get the door slamming, dirty looks, and the signing but what I

> hate

> the most is the talking back and making sure she gets the last word it

> RRRRRRRRRRRR I hate this the most!!!!!!! And remember she is only 11 I

> can't image

> what it will be like when she is 13 OOOOHHHHH MMMMY GGGGGGGOOOODDDDD 

> I AM NOT

> GOING TO MAKE IT!!!!!!! HELP ME THROUGH THIS!!!!!! Deb A

>

>

>

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Sorry using another computer I have no idea what happened.Natalia the best

(easiest IV )was done in an ambulance .I was in labor with my 7th baby Rebekah

..She had gone poop before she was born so they said in case of emergency

surgery we need an IV.I have veins that roll around a lot and I always look

like a

bruised pincushion. That IV didn't hurt or roll or bruise.I wish they were all

like that.Have you ever had a port ? Rebekah has had one since she was 8

months she would blow IV's like up to 4 per day even cut downs and picc

lines.Her

veins got so bad she was one big bruise.Good Luck with the IV.BeckyB.-Mama

to-8--2w/cf--Nana to-2

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Becky,

I think that I am ready for the port, even a pick line. Anything but

this. Since it looks like having an IV in my will be a normal part of

my life, I have to think about it. Right now I am like one big bruise

and I think they might have problems keeping or finding a vain in me

still for three weeks. I get it out Christmas Morning. And most

likely will be back by February, which I am totally fine with since I

am used to it now, but i rather avoid the picking and missing, and

bruising, and especially the unnecessary visits to the ER. I am mega

scared of catching something there and not being able to bounce back.

I hear stories of CF affected people being stable and doing well, and

then boom they get something, and their FCV1 falls below acceptable,

and suddenly they slip away. And they otherwise should have more time

left of stable living. That is the primary reason I resented that the

nurse could not do her job at home, that I had to go to the ER without

REALLY needing to.

But it seems okay now. The swelling is going down, and the bruising

too. I can't believe all that happened from one afternoon.

On Tuesday, December 9, 2003, at 12:22 AM, hlbbet@... wrote:

> Sorry using another computer I have no idea what happened.Natalia the

> best

> (easiest IV )was done in an ambulance .I was in labor with my 7th baby

> Rebekah

> .She had gone poop before she was born so they said in case of

> emergency

> surgery we need  an IV.I have veins that roll around a lot and I

> always look like a

> bruised pincushion. That IV didn't hurt or roll or bruise.I wish they

> were all

> like that.Have you ever had a port ? Rebekah has had one since she was

> 8

> months she would blow IV's like up to 4 per day even cut downs and

> picc lines.Her

> veins got so bad she was one big bruise.Good Luck with the

> IV.BeckyB.-Mama

> to-8--2w/cf--Nana to-2

>

>

>

>

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Carolyn,

Thanks for writing. I wish you all the luck in the world, and I hope

that the sweat test shows nothing. I hope that you are far from CF.

But it is good to be prepared. And know that there are many others

that face what you are, and can cope, as can you. I don't want to say

any more, until you know for sure. I'm thinking of you and Liam

tonight.

the IV situation is a serious pain in the you know what. As if I need

more to worry and hassle with. I agree with you about the IV team. I

learned the hard way this weekend. And I like your 'confidently

requested'...I think that's a nice way of putting it. I guess its

better than throwing a fit. And sometimes I really want to do that.

And you are right, it is about making them take responsibility for

their jobs. All of us have to do that, but especially when you are

dealing with peoples health.

Again, thinking about you.

Natalia

24 w CF

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Natalia,

If you ever feel like throwing a fit, you just go right ahead and

throw it! You've earned that right!!! I never speak up either and

then I beat my self up for a long time afterwards for not putting my

foot down. I don't know why it's so hard to speak up. I hope that

Toni (my daughter) and I both get better at this, for Abby sake.

Gale

Grandma to Abby (23.5 months with CF)

> Carolyn,

> Thanks for writing. I wish you all the luck in the world, and I

hope

> that the sweat test shows nothing. I hope that you are far from

CF.

> But it is good to be prepared. And know that there are many others

> that face what you are, and can cope, as can you. I don't want to

say

> any more, until you know for sure. I'm thinking of you and Liam

> tonight.

>

> the IV situation is a serious pain in the you know what. As if I

need

> more to worry and hassle with. I agree with you about the IV

team. I

> learned the hard way this weekend. And I like your 'confidently

> requested'...I think that's a nice way of putting it. I guess its

> better than throwing a fit. And sometimes I really want to do

that.

> And you are right, it is about making them take responsibility for

> their jobs. All of us have to do that, but especially when you are

> dealing with peoples health.

>

> Again, thinking about you.

>

> Natalia

> 24 w CF

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  • 4 weeks later...

boguslawska@...

> Hi, tried 2 x to send you pics, keeps getting sent back, can you

> email me ur addy, i deleted all my mailboxes.

> Thanks

> Patty

>

>

>

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

> 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>

>

>

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