Jump to content
RemedySpot.com

Re: New to CF Group.

Rate this topic


Guest guest

Recommended Posts

New to CF Group.

Hi

I'm Natalia and I am 24 with CF. I was diagnosed when I was really

little, A couple years old. I did well throughout high school and okay

throughout University, but those 5 years of school really worn me down.

High school is bearable compared to University, where there is not

enough time to do all the school stuff, let alone CF stuff. So I

graduated this past May and came crashing down since then. one flare

up after the other. Never really bouncing back from each previous one.

Now I am on IV treatment for a month at home. I live alone and it

still works out really well. The nurse comes every morning to change

the bag, though I am learning how now, so in a few days I will do it by

myself. They will only come every 4-5 days to change the line. So it

gives me a sense of independence. I am having it out on Christmas

day. I was on the same treatment in June, but only for 10 days and

really it did very little for me. So who knows what this will do. I

also started to take steroids, first time for that, and already it has

helped with my appetite a lot. I have lost 16lbs during the summer,

and seem to be losing more daily. So I hope this helps.

About non-CF stuff. I went to University for architecture, but soon

realized that I cannot practice within that field. I get too sick too

often. So I started my own business designing hand-bags and jewelry,

and it has been going well. Kinda exciting, considering I thought that

I would never be self-sufficient. Which is as painful of a realization

as CF taking over your body. I don't know which is worse.

I would like to meet some of you, especially those young adults out

there with CF. Dealing with the uncertainly of their future. Plus I

can give advise to those of you that have little ones. I want to share

experiences and help you any way, since I dealt with all of it. Plus I

was a fairly active kid and teenager, never allowing anything to stop

me. And I have some strong view points about exercise and CF, as well

as life choices with respect to Educations and career choices.

I love to share, and hope to learn from you, as well as share my own

life struggle with CF. It's a hard thing, and all those on this list

who deal with it, by either being parents, siblings, friends, or are

carriers themselves, you are strong people.

Natalia

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

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.

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

Link to comment
Share on other sites

WELCOME to this fine list. It is great to have more folks along. What a

cleaver & creative idea to do handbags, you could do travel luggage

also. -------------

I have a granddaughter who does jewelry ......Loves it & hopes to actual

grow her business full scale

CONGRATS!!!

LOVE & HUGS, GRANDMOMBEV

New to CF Group.

Hi

I'm Natalia and I am 24 with CF. I was diagnosed when I was really

little, A couple years old. I did well throughout high school and okay

throughout University, but those 5 years of school really worn me down.

High school is bearable compared to University, where there is not

enough time to do all the school stuff, let alone CF stuff. So I

graduated this past May and came crashing down since then. one flare

up after the other. Never really bouncing back from each previous one.

Now I am on IV treatment for a month at home. I live alone and it

still works out really well. The nurse comes every morning to change

the bag, though I am learning how now, so in a few days I will do it by

myself. They will only come every 4-5 days to change the line. So it

gives me a sense of independence. I am having it out on Christmas

day. I was on the same treatment in June, but only for 10 days and

really it did very little for me. So who knows what this will do. I

also started to take steroids, first time for that, and already it has

helped with my appetite a lot. I have lost 16lbs during the summer,

and seem to be losing more daily. So I hope this helps.

About non-CF stuff. I went to University for architecture, but soon

realized that I cannot practice within that field. I get too sick too

often. So I started my own business designing hand-bags and jewelry,

and it has been going well. Kinda exciting, considering I thought that

I would never be self-sufficient. Which is as painful of a realization

as CF taking over your body. I don't know which is worse.

I would like to meet some of you, especially those young adults out

there with CF. Dealing with the uncertainly of their future. Plus I

can give advise to those of you that have little ones. I want to share

experiences and help you any way, since I dealt with all of it. Plus I

was a fairly active kid and teenager, never allowing anything to stop

me. And I have some strong view points about exercise and CF, as well

as life choices with respect to Educations and career choices.

I love to share, and hope to learn from you, as well as share my own

life struggle with CF. It's a hard thing, and all those on this list

who deal with it, by either being parents, siblings, friends, or are

carriers themselves, you are strong people.

Natalia

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

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.

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

Link to comment
Share on other sites

Thanks for the welcome. I love how creative what I do allows me to be.

>

> WELCOME to this fine list. It is great to have  more folks along. What

> a

> cleaver & creative idea to do handbags, you could do travel luggage

> also. -------------

> I have a granddaughter who does jewelry ......Loves it & hopes to

> actual

> grow her business  full scale

> CONGRATS!!!

>

> LOVE & HUGS, GRANDMOMBEV

>

> New to CF Group.

>

>

> Hi

> I'm Natalia and I am 24 with CF.  I was diagnosed when I was really

> little, A couple years old.  I did well throughout high school and okay

> throughout University, but those 5 years of school really worn me down.

>   High school is bearable compared to University, where there is not

> enough time to do all the school stuff, let alone CF stuff.  So I

> graduated this past May and came crashing down since then.  one flare

> up after the other.  Never really bouncing back from each previous one.

>   Now I am on IV treatment for a month at home.  I live alone and it

> still works out really well.  The nurse comes every morning to change

> the bag, though I am learning how now, so in a few days I will do it by

> myself.  They will only come every 4-5 days to change the line.  So it

> gives me a sense of independence.   I am having it out on Christmas

> day.  I was on the same treatment in June, but only for 10 days and

> really it did very little for me.  So who knows what this will do.  I

> also started to take steroids, first time for that, and already it has

> helped with my appetite a lot.  I have lost 16lbs during the summer,

> and seem to be losing more daily.  So I hope this helps.

> About non-CF stuff.  I went to University for architecture, but soon

> realized that I cannot practice within that field.  I get too sick too

> often.  So I started my own business designing hand-bags and jewelry,

> and it has been going well.  Kinda exciting, considering I thought that

> I would never be self-sufficient.  Which is as painful of a realization

> as  CF taking over your body.  I don't know which is worse.

> I would like to meet some of you, especially those young adults out

> there with CF.  Dealing with the uncertainly of their future.  Plus I

> can give advise to those of you that have little ones.  I want to share

> experiences and help you any way, since I dealt with all of it.  Plus I

> was a fairly active kid and teenager, never allowing anything to stop

> me.  And I have some strong view points about exercise and CF, as well

> as life choices with respect to Educations and career choices.

> I love to share, and hope to learn from you, as well as share my own

> life struggle with CF.  It's  a hard thing, and all those on this list

> who deal with it, by either being parents, siblings, friends, or are

> carriers themselves, you are strong people.

>

> Natalia

>

>

>

>

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

> 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.

>

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

>

>

>

Link to comment
Share on other sites

Natalia,

It is nice to meet you. I am glad that you joined this group. You

will be able to help those of us without CF understand what our

children and grandchildren deal with.

I have a 23 month old grand daughter that has cf. She had a rough

start, but is doing well now.

Gale

> Hi

> I'm Natalia and I am 24 with CF. I was diagnosed when I was really

> little, A couple years old. I did well throughout high school and

okay

> throughout University, but those 5 years of school really worn me

down.

> High school is bearable compared to University, where there is

not

> enough time to do all the school stuff, let alone CF stuff. So I

> graduated this past May and came crashing down since then. one

flare

> up after the other. Never really bouncing back from each previous

one.

> Now I am on IV treatment for a month at home. I live alone and

it

> still works out really well. The nurse comes every morning to

change

> the bag, though I am learning how now, so in a few days I will do

it by

> myself. They will only come every 4-5 days to change the line. So

it

> gives me a sense of independence. I am having it out on Christmas

> day. I was on the same treatment in June, but only for 10 days and

> really it did very little for me. So who knows what this will do.

I

> also started to take steroids, first time for that, and already it

has

> helped with my appetite a lot. I have lost 16lbs during the

summer,

> and seem to be losing more daily. So I hope this helps.

> About non-CF stuff. I went to University for architecture, but

soon

> realized that I cannot practice within that field. I get too sick

too

> often. So I started my own business designing hand-bags and

jewelry,

> and it has been going well. Kinda exciting, considering I thought

that

> I would never be self-sufficient. Which is as painful of a

realization

> as CF taking over your body. I don't know which is worse.

> I would like to meet some of you, especially those young adults out

> there with CF. Dealing with the uncertainly of their future. Plus

I

> can give advise to those of you that have little ones. I want to

share

> experiences and help you any way, since I dealt with all of it.

Plus I

> was a fairly active kid and teenager, never allowing anything to

stop

> me. And I have some strong view points about exercise and CF, as

well

> as life choices with respect to Educations and career choices.

> I love to share, and hope to learn from you, as well as share my

own

> life struggle with CF. It's a hard thing, and all those on this

list

> who deal with it, by either being parents, siblings, friends, or

are

> carriers themselves, you are strong people.

>

> Natalia

Link to comment
Share on other sites

HI Natalia,

I am pleased that you decided to share with us your experiences. My

daughter is 10 and she was diagnosed last year. It is really nice to

hear from someone who ccan give some insight on what we may be

facing. Do you have a website where we can see the things you

design? Perhaps they woudl make good holiday gifts! ALso, where do

you live?

Welcome!!

e

Link to comment
Share on other sites

Thank you for your insight. I would love to hear your thoughts on

all aspects of raising a child with CF. In particular I would like

to know about school. I have a 4 year that will start kindergarten

next year.

mom of Carson (4yrs with CF) and Will (18 months without CF)

> Hi

> I'm Natalia and I am 24 with CF. I was diagnosed when I was really

> little, A couple years old. I did well throughout high school and

okay

> throughout University, but those 5 years of school really worn me

down.

> High school is bearable compared to University, where there is

not

> enough time to do all the school stuff, let alone CF stuff. So I

> graduated this past May and came crashing down since then. one

flare

> up after the other. Never really bouncing back from each previous

one.

> Now I am on IV treatment for a month at home. I live alone and

it

> still works out really well. The nurse comes every morning to

change

> the bag, though I am learning how now, so in a few days I will do

it by

> myself. They will only come every 4-5 days to change the line. So

it

> gives me a sense of independence. I am having it out on Christmas

> day. I was on the same treatment in June, but only for 10 days and

> really it did very little for me. So who knows what this will do.

I

> also started to take steroids, first time for that, and already it

has

> helped with my appetite a lot. I have lost 16lbs during the

summer,

> and seem to be losing more daily. So I hope this helps.

> About non-CF stuff. I went to University for architecture, but

soon

> realized that I cannot practice within that field. I get too sick

too

> often. So I started my own business designing hand-bags and

jewelry,

> and it has been going well. Kinda exciting, considering I thought

that

> I would never be self-sufficient. Which is as painful of a

realization

> as CF taking over your body. I don't know which is worse.

> I would like to meet some of you, especially those young adults out

> there with CF. Dealing with the uncertainly of their future. Plus

I

> can give advise to those of you that have little ones. I want to

share

> experiences and help you any way, since I dealt with all of it.

Plus I

> was a fairly active kid and teenager, never allowing anything to

stop

> me. And I have some strong view points about exercise and CF, as

well

> as life choices with respect to Educations and career choices.

> I love to share, and hope to learn from you, as well as share my

own

> life struggle with CF. It's a hard thing, and all those on this

list

> who deal with it, by either being parents, siblings, friends, or

are

> carriers themselves, you are strong people.

>

> Natalia

Link to comment
Share on other sites

Hi Natalia

Welcome and thanks for sharing your experiences! Congratulations on

your Graduation and starting up your own business. I am copying

your message to show to my daughter.

Barbara

Mum to Nicky 15wocf and Kristy 13 wcf

Australia

Link to comment
Share on other sites

Welcome Natalia! I have a 19 year old wcf so I'm sure you will be lots of help

for me. Right now it is the usual problem people have with their teens, getting

her to do her treatments and vest and take her meds without my nagging. The

problem is she gets annoyed with only me mentioning her treatments and its about

time she did one. She does forget sometimes and sometimes just doesn't want to

be bothered. She doesn't clean her nebs but somehow doesn't seem to get sick

from it. Once in a while I gather them all up and clean them. I am sure this

puts some of the parents of younger children in shock. When was younger I

used to clean them everyday too. I would like to get her involved with one of

these lists too but she is anti cf right now too, and she doesn't even want to

hear about anything related to it. She goes to clinic since I make her and she

takes her meds half the time about. I know because she doesn't run out of them

every month like she should. I guess I have babbled on long enough. I guess I

should mention she doesn't need enzymes so she doesn't have the stomach problems

that she would have from skipping them if she needed them.

Welcome again!

love,

M

mom of Nick age 21 nocf and age 19 wcf

Link to comment
Share on other sites

Welcome, likewise, to Natalia; my child wcf is all of 38+; we will not

discuss

my age, but I do have cf and two carrier adults! Welcome, aboard!

Love, n Rojas, from California

Re: New to CF Group.

> Welcome Natalia! I have a 19 year old wcf so I'm sure you will be lots of

help for me. Right now it is the usual problem people have with their

teens, getting her to do her treatments and vest and take her meds without

my nagging. The problem is she gets annoyed with only me mentioning her

treatments and its about time she did one. She does forget sometimes and

sometimes just doesn't want to be bothered. She doesn't clean her nebs but

somehow doesn't seem to get sick from it. Once in a while I gather them all

up and clean them. I am sure this puts some of the parents of younger

children in shock. When was younger I used to clean them everyday

too. I would like to get her involved with one of these lists too but she

is anti cf right now too, and she doesn't even want to hear about anything

related to it. She goes to clinic since I make her and she takes her meds

half the time about. I know because she doesn't run out of them every month

like she should. I guess I have babbled on long enough. I guess I should

mention she doesn't need enzymes so she doesn't have the stomach problems

that she would have from skipping them if she needed them.

>

> Welcome again!

> love,

> M

> mom of Nick age 21 nocf and age 19 wcf

>

>

>

>

Link to comment
Share on other sites

--WELCOME to you & your family, We love to have others join & be part of

this wonderful family!!

If you would want some info/tapes/booklets that MIGHT help in these areas

or just provide added suggestions/reasons. etc about you person with

CF -----------I too have a 19+ yr. old with CF (granddaughter) ....I would

be very happy to send to you. Just post back with your shipping address.

Please send street address, not P.O. if you want tapes as well. I send out

small box thru FEDEX 7 they wont deliver to PO's.

Sooo best wishes & let me know

LOVE & HUGS, GrandmomBEV

> Welcome Natalia! I have a 19 year old wcf so I'm sure you will be lots of

help for me. Right now it is the usual problem people have with their

teens, getting her to do her treatments and vest and take her meds without

my nagging. The problem is she gets annoyed with only me mentioning her

treatments and its about time she did one. She does forget sometimes and

sometimes just doesn't want to be bothered. She doesn't clean her nebs but

somehow doesn't seem to get sick from it. Once in a while I gather them all

up and clean them. I am sure this puts some of the parents of younger

children in shock. When was younger I used to clean them everyday

too. I would like to get her involved with one of these lists too but she

is anti cf right now too, and she doesn't even want to hear about anything

related to it. She goes to clinic since I make her and she takes her meds

half the time about. I know because she doesn't run out of them every month

like she should. I guess I have babbled on long enough. I guess I should

mention she doesn't need enzymes so she doesn't have the stomach problems

that she would have from skipping them if she needed them.

>

> Welcome again!

> love,

> M

> mom of Nick age 21 nocf and age 19 wcf

>

>

>

>

Link to comment
Share on other sites

Thank you, but it IS spelled " n! " My mother did that to avoid my being

referred to or called " Anne! " Did not work--just causes phone comp

any types to refer to me as " Sir! "

Love, and Welcome, anyway; it's a trivium! n

Re: New to CF Group.

> n,

> Thanks for the welcome!!

>

>

>

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

> 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.

>

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

>

>

>

Link to comment
Share on other sites

Join the conversation

You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

Loading...
×
×
  • Create New...