CF/MISC from GRANDMOMBEV

[Guest guest]

In a message dated 9/15/2003 4:17:19 PM Central Daylight Time, bevd@...

writes:

> DEB A.. it was really very interesting about the Camouflage Ball fund

> raiser. I sure hope all the ones ahead will be as successful . I bet

> lots of folks will start to do them now that they know about

> them.Thanks!!!

I sure hope so!! It is a really fun way to get the men involved and doing

something for our kids. Deb A

[Guest guest]

HOWDEEEEEEEEEEEEEEEEEEEEEEEE EVERYONE !!

A BIT LONGER THIS TIME IN BETWEEN GROUP POST.i HAVE BEEN REALLY BUSY

THIS SUMMER. wHAT HAPPENS TO ME, IS i GET BEHIND.SORRY.(MAYBE SOME ARE

GLAD OR HAVEN'T NOTICED Sooooooooooooooooooooooo.

I want to start off saying how sorry I am that anyone isn't feeling well

& of course send great big " GET WELL SOON " WISHES!!

Then, I want to send another " BIG THANK YOU " to so many folks who

remembered me, is such really nice ways. I appreciate all & hold you, my

cyber family , very dear to my heart.!!

SUZAN M.. I have placed your name & info on the next INFORMER to be in

the PEN PAL section. It does get folks that maybe aren't on the computer

a person to communicate with Bless you & thanks..

OOPS-

PAMELA H.. Also have added your info to the pen pal section list as

well.

JENNIFER T I have placed your name on the mailing list as you asked

also. I am so pleased that so many enjoy my little " folks " newsletter. I

have been doing that at home for 19 years. now. -the old fashion

way-since as you can tell I don't type SO, I do the old way & cut &

paste others writings:)

Glee, I cant list all the folks .they have been adding many more. I

didn't realize it has been so many.Anyone who asked has been added &

many actually got hand addressed same day they called or wrote to be

included. Bless you all & enjoy. DON'T FORGET, We love pictures & " your

story " too.

I still have a few school brochures .REMEMBER , send address with

request. I know school has started but just incase your doing a 504 .

they sometimes help.

MONIQUE.. " GSH " .. I am glad your taking the challenge & have started

Liam on the GSh . it has certainly been applauded by some VERY

knowledgeable folks. I listened to the doc about the trials they had

done & what all was being planned & it sure sounds great. It has been

approved , tested for other illness' so I am praying this too might help

all folks -not just health-wise , but also with the financial part . It

sure brings your meds cost down......I am sure that is what is fighting

having it approved. It will be displayed(abstracts) & session at the

NACFF , so many docs all over the world will be able to hear-see & some

talented folks , then will give their opinion.

DEB A.. it was really very interesting about the Camouflage Ball fund

raiser. I sure hope all the ones ahead will be as successful . I bet

lots of folks will start to do them now that they know about

them.Thanks!!!

DAWN. I know you will do one. you have so much energy. thanks for all

your caring.Gosh, with 4 kids too :)JEN.. we are all praying

everything in this testing Tuesday will find the causes & offer some

relief in better DX for a better treatment plan.Holding here for

results -prayers abound!!

VIKS.. I am so proud of your starting that wonderful Fdn in UK. How

fabulous for all there. The web page I am sure will be very nice & also

a welcomed relief for many who live there as well Explain to us all what

the " posty Project is " It sounds like maybe post cards or picture cards

??? Sounds so sweet .I know it will surely be a welcome to those ,

especially in the club...........

MARCY L.. It was not a great Sunday for you , but perhaps this week will

brighten up some. will pull thru all this .It always is harder on

the ones who haven't been sick -then tend to think . " not me " . I have a

granddaughter who is that way. Now, I am NOT saying they are flip about

it , just that cool feeling they are going to let it to them.'s

liver became a source also after her appendix burst. She was over

medicated at a local (nonCF ) hospital & that wasn't a good thing. It

took almost 3 weeks to get her back on track. You will all be back soon

too. It is good that even though your not getting emotional help from

your ex.you are getting the medical insurance. That is a BIG help. You

come to the list anytime. We are here .It is a SUPPORT GROUP--family &

your part of this family .

SARA.. thanks for doing all the fund raisers for research. We need all .

It is nice that you are doing the AWARENESS talks too . Bless you.One

thing you mentioned. The duplicates of so many fund raisers DOES make it

hard for all. EACH has their own personal reasons for doing

sooooooooooooo best wishes.

LINDA/JOEY. Prayers & best wishes , abound for Joey right now. he will

be up & at 'em soon. All the love & caring just oozing his way .It will

work. give him a grandmombevhug .(arms across the chest ..:) waiting

to hear the good news soon.'s em ail is tazziesgurl@... to

send good wishes to JOEY ( & )

JAMES B.. Again thanks for pulling the insurance list info out & sharing

.. As new folks come on line & many of us loose that list . Thanks. If

others have any , we welcome OR updates /changes to those on that list .

Again, Bless you & thank you.

ANDREA B..gollee gal..You have to stay well ..The web site you gave will

surely get many hits now. Especially for those who have had kidney

stones.

It is always great to have another site with info we NEED from time to

time. Thanks sweet gal!! I am so glad it has worked for you so far

taking

the herbal " chanca pedra' You never know--------------Thanks .

SHRIKANT. gosh , I am so glad your back on line. How did it all turn out

for you all. Maybe they will loosen up soon & you all will get clearance

for medical reason. Please let us know when it happens too. we are all

pulling for you folks!!

AGNES..... I am so very happy for him to get to go to NY & visit

all the places he wanted too. it is super. I know that you made wise

use of that " quite " time by yourself too. Isn't it great ?? . Just a few

days to do whatever you want , every minute .-right ! ! --I know you

also worked your head off at your job. That made allot of difference in

the yearly outcome too... But that too was rewarding for you

personally-Your are such a dedicated worker... I hope everyone is

feeling well & stays that way. fall is coming & I bet it is beautiful up

there in CONN. I love the changing of the leaves. . take care.

WENDY,,sad to hear you haven't been feeling well I do hope that trend is

ending & your trip ahead at the club will get you all ready for a super

WELL holiday time this year. maybe your job will realize how great a

worker you are & the shorter trip will help you stay well with less

stress. ANYWAY...your first job is to take care of YOU.......Love 7 get

well wishes are coming at you with my prayers too.

JOANNE S. Your book " taking Flight " is such an uplifting one. I wish

the clinics OR a pharmaceutical company would buy hundreds of them &

give to all who are attending clinics, it shows the other side to all

those with CF & their families........GREAT stories & an added

blessing-THEY ARE TRUE!!! Thanks for getting that all together for us...

MARNIE.. . YOUR POST EARLIER WAS SO GREAT ABOUT.Loving Steph and

knowing you had to let " her " LIVE " her " life & stand in the background &

try things. It isn't easy . We do what we can ,teach them to be careful

, & pray allot. Or ,wish , whichever is your choice, BUT loving them

enough to do that is so hard . We are naturally so protecting of them.

thanks for your very nice post -a gentle reminder.............:)

JULIE. your dilemmas for school care are some we all have had sometime,

or at least many have........ It makes things easier somehow to know

that others have been there -done that (their kids have) for all.I am

very sure you will be hearing lots of different ways people have handled

some of the same situations. Isn't this, & all the lists wonderful. I

feel silly repeating , but SUPPORT LIST are just what they are .!!

DAELYNN. Your suggestions & examples were so great. it is just as you

said too. Bless you .You always have some idea & they are so helpful .

Good prepreparations really help.. I hope you & yours are all well today

..

LISA T. I am getting excited that they will be doing more ED days out

there. I think they are so very helpful. The MILAN FOUNDATION will be a

wonderful helper for so many. --Thanks to you..

KAREN S.. Maybe by now your doing well. I know you do well when you have

Kurt around. you said you were feeling poorly there. How are you doing

this week. maybe some rest & that will help . You always try to do to

much.

JEN/RON.. hey gal , How is doing now. it has been a few weeks . I

know those kiddos want her for another playmate. I hope it has brought

you some comfort knowing he can detect possible seizures in advance. I

still cant see how a dog does that. It is wonderfully amazing.. Bless

you & let me hear from you soon. I need an update on them all :)(hi

to Shirley also)

KIM P.. Schools back .so your time is limited, I know BUT let us know

your still kicking :) its starting to get Coooooold up there yet??

Kathy P , thanks you for all your sweet posts .You sure do keep us all

up to date , etc. take care as well & my love to --of course

KATHY (little Greek girl) Thanks you also for your posts & UPDATES.wE

NEED YOU HERE ON THIS LIST 7 ALL THE LISTS

love & hugs,

GRANDMOMBEV