cf/misc w/gRANDMOMbev--------------HOWDEEEEEEEEEEEEEEEEEEEEEE

[Guest guest]

HOWDEEEEeeeeeeeeeeeee you all!!

wELL IT HAS BEEN A WHILE AGAIN SINCE I JOTTED BY " LITTLE POST " .

I HAVE BEEN WRITING BACK TO INDIVIDUALS ON MANY POSTS BUT I CANT REALLY

KEEP UP WITH ALL I WOULD LOVE TO. yOU ALL ARE SO VERY ENTHUSIASTIC AND

REALLY DELIGHTFUL -IT IS HARD TO NOT ANSWER ON THE SPOT :)

tRYING TO GET TO AS MANY AS I CAN. I PRAY YOU ARE ALL DOING WELL & IF

NOT SO HOT-THEN I PRAY YOUR BETTER REALLY SOON ! !.........

I WANT GO TELL EACH & EVERYONE OF YOU THAT WERE AT THE CFRI CONFERENCE

LAST MONTH . IT WAS GREAT TO SEE YOU & GET TO KNOW YOU EACH A LITTLE

BETTER . IT GOT VERY BUSY FOR ME , SO SOME I DIDN'T GET TO CHAT WITH AS

MUCH AS I WANTED TO . .RIGHT BECKY.?.OF COURSE SOME OF YOU KNEW EACH

OTHER, SOOO THAT WAS A GREAT THING. TO ME ALL THE INFO WAS REALLY

WONDERFUL . THE SPEAKERS WERE SUPER. I ACTUALLY UNDERSTOOD THEM ALL...IT

WAS EXTREMELY INTERESTING TO HEAR DR BISHOP SPEAK ON GSH.--- VERY

CLEARLY TELLING ALL IT WAS NOT APPROVED BY THE CFF & THAT THERE WERE

GOING TO BE MORE STUDIES -BIGGER ONES & MAYBE THAT WOULD HELP CONVINCE

THE WORLD. VALERIE HUDSON WAS ALSO THERE & WE HAD A REALLY NICE

VISIT-SHE IS VERY CLEAR & GIVES MUCH CREDIT TO ALL THE FOLKS WHO HAVE

HELPED GET THIS OUT INTO THE MEDICAL TUG OF WAR ....

DR P.QUENTIN IS GREAT ,AS ALWAYS , & DR R. MOSS, AS WELL AS OUR DR J.

WINE, FROM CA. THERE WERE SO MANY MORE. DR l SAIMAN, FROM COLUMBIA

UNIV., N.Y. & DR. J. KALINYAK, FROM THE SANFORD MEDICAL CTR.

THERE WERE AS I SAID,-- SO VERY MANY GREAT SPEAKERS & MODERATORS. IT WAS

SUPER MEETINGS. ! YOU ALL SHOULD REALLY TRY TO COME NEXT YEAR.

TALANA..I hope your still doing as well & that a teaching spot has come

around. We haven't heard so I have to hope & pray your so busy getting

set up -that is why. know your in my prayers for the right job to just

pop up !!

RAY G.. haven't heard lately , but then I think we are all either on the

road or hibernating in from the heat :) I do pray this finds you &

your sweetie doing well .

KATHERINE K. I am hoping your on this list too & seeing this post. I am

doing well & so is my ERIN. She was a week in OHIO , with " the world

changers " -a group from her church go to different states each summer &

doing home repairs , buildings, roofs, etc . This year my daughter

Kelley(her mom) also went with them. Kelley drove 15 in her van &

another youth director drove the other 15.they had a blast. They slept

in host homes & church gyms........BUT LOVED EVERY MINUTE OF IT!! This

is the 6 year they have done it . they join other youth groups from

across USA........Sooo She is very well : She hadn't been in the

hospital at all until last year (Oct) her appendix burst & she didn't go

to doc/hosp until her boyfriend made her . she was not under great

care(CF ) until she was moved to her clinic DUKE-they are really

fabulous in their CF care.I hope your sweet wee family are all doing

well.Santosh is such a different & very manly name. I like it allot!! &

Leela is soooo femmine . You did great in those selections gal!!

I know they are as pretty as their names are.

NICOLE W.. it is so very nice to have you on the lists they help us all

so very much . your precious wee one, MADELINE will be doing fine with

all the care & knowledge you are getting .That's the best thing to do.

WELCOME ! ! TEACH the world .AWARENESS WEEK in October. 2003!!

JULIE R. I hope you all have been able to get thru all the info I sent .

I do firmly believe that the more info we have, & spread around to

others , the easier it will be for our folks , young & old in this

world AND a big thing is more will donate to research & better care AND

the researchers will want to get on studies to help our loved ones & us

all. WELCOME to the lists.

JEN A. HAPPY NEW HOME!! I know you ALL were happy about that.Are all the

boxes emptied yet?? Between all the appointments. Gosh, you sure had a

load on your shoulders .ALWAYS, lean on our shoulders on these lists!!

We are hear for your joys, fears. & tears. whatever your needs. We each

have them too .so be ready :):)With kiddo's at 4 mos, ncf,... but

4yr,3yr, & 1yr, all with CF .Believe me.We ARE HERE FOR YOU!!! you may

also call me at any time 1- -toll free.

REBECCA P.. Nice to hear from you .Wow .20 yr old. You can sure be

allot of help to many with your " been there-done that's " I really think

that is some of the best info we all get . But I hope some of these

oldies BUT goodies on line may help you as well . We are here together

!! Write anytime. I has machine open allot:)

MERANDA P.. GOSH, What ever is Ralstonia Mammitolilytica?? It sounds

like a name of a bear or fish?? I am sorry to hear about that one. We

have enough , they don't have to keep finding more:) did you get the

links I sent ?? Anyway I am really glad they could identify what was

wrong though -that helps.Maybe some dentist should be warned when doing

someone with CF -at least tell the patients about it-to be on the

lookout for it.....Take care & I do hope your doing better now.

KELLY.......Yesterday I wrote to tell you how very lovely your memorial

to your brother, JOHNNY, who left this world eight years ago. It was

beautiful . thanks you from us all . We too wish those kind words for

yours, mine, & our loved ones too...Bless you . have a better week

yourself now , in his memory . WE WILL ALL FIGHT this dreaded damn

disease!!

NORMA JEAN. your posts are always so very nice & I wish I too lived near

you & could pop in for a visit.... you make it so welcoming & pleasant.

your family is lucky to have you too. I remember how caring you were for

your dear Nephew.

LANA.. I am sorry you lost the custody battle. I do hope you have

visitation rights though. God does have HIS plans as you said in your

post about getting the step children now all at your home. Your home is

a loving one & I know RITA would be happy about that too. stay with us .

we love you 7 know you care so much . we will always be here for you

with OR without CF.

MEGAN J . Gosh, you got thru your mail -I am only starting. Your

GOOD!!!- I found I have to skip over some . I hate to do that but when I

am gone for 4 days here, back 3 days & off again during summer -It is so

tough to keep up . I am so addicted to you all It drives me batty not to

hear from you ALL. I do always keep you in my thoughts & prayers & good

wishes. You should be so very proud of CATE , being elected to her

student council .That is very prestigous in school!!-Your getting paid

work is going to get to be a regular thing -you just watch .All good

things will be heading you & your families way!!-keep that smile &

caring thoughts for others .!!

WILLIAM. I know your traveling & I do want all to keep you in their

great thoughts as you " boat it " over to Norway.Gosh, wouldn't their be a

quicker way??I know you'll be so happy being with your sweetheart. but

do take care.

DANA. I loved the rain/run that you two had and how you all laughed &

felt full life as you did . I couldn't help but have tears as you

related the experience. HE HAD NEVER RUN LIKE THAT BEFORE TX " How

marvelous... xoxoxoxoxo to you both !

DEBORAH S.. I hope your starting to feel better. Perhaps some have had

some ideas for you. I was surprised to notice that you are 50 years old.

CONGRATS!! that is beautiful . I wonder if you knew what your mom died

from at 27.? that is the age that my husbands(ex) was . they just said

she had " quick TB' , died in 6 weeks illness.we know now that was CF .

did your mom have CF ? I don't mean to be nosey, just trying to see if

there is anything connective to that age thing. Again, I do hope your

doing better now.The problems you expressed seemed more like a female

thing then CF directly . I am sure that might affect some .BUT I would

head to san OBGYN. good luck.

KELLY W (42) WELCOME to the lists. Your more than that ,we are so

sorry you have CF BUT, it to be Dx at 42.wow. many have late Dx here on

lists I am sure -at least I hope they do _write you & tell you of their

experience. It is hard to believe that with such smart docs & all that

it would take them that long. BUT-that is done.you will be on your way

with good care, great maintance meds & good treatments to help you fell

better & stay that way. always ask all you want to here .

Your family sound like allot of support. your kids will now know what to

say when your not feeling so well. ENJOY......take care & get all the

Right stuff to do from now on.

VALERIE LEDER.. . My it was so very nice to see your post. it is

surprising to hear you might be moving again. But 'duty-work " calls. It

was really nice to hear that Leo - & Colin are doing well . let us know

if we can help with your order.

JEN.RON . Gosh gal . it was great seeing you & Shirley last week . It

seems like we were there such a short time though . You'll have to come

sometime when you can stay.

I really am glad to see you looking so good too. I do hope all is well

now & stays that way. You know you & all of yours are in my prayers.

Give them all a hug!!

AGNES HI GAL!! I sure do miss your varied posts in the evening . I know

those storms do keep us off . Your a smart gal to do that too. how is my

ALEX? Haven't heard an update lately . Maybe I was just out of town.

Even tho I try hard to catch up . It doesn't always happen. give him a

hug .........

JILL C . HOWDEEEEEEE, I am so sorry your car had problems which then

gave you problems. I missed seeing you & going out to eat. Dr. Steiner

was there & she asked for you too. She was the one who drove us the year

before.:) hi to all & hope I get to see ya soon.

ROY. DITTO to you . I do hope I get to meet you in the near future That

Jill is some kinda gal -But then, you already know that . So you must be

some kinda guy , since Jill cares about you . So have fun. take care

CLOYCE, thanks for all the great updates on TARA , etc . Also the great

extras you send . A smile a day to you!!

VALERIE H.. I was so pleased to meet you .We have talked forever , it

was nice to put a face with the voice & post. We were all very impressed

with & yourself & the great presentation . I do think that some of

those folks (clinicians) were extremely interested in some trials. .. we

will be able to do the compounding , etc . for GSH as well with rx from

doc. Also you can talk with Lois on other preparations, etc . privately

..She has been doing the crème/suave for sometimes . Several docs here

prescribe it too.

Her email is nloisadams@... the way, I haven't heard from ROBIN

yet. She was going to email me so I would have her addy . What a

delightful time we had with you all .

take care . thanks for the pictures. I am putting in my camera to be

developed tonight :) I am also doing the INFORMER this week for the

autumn edition...

Gosh , I bet this is too long a post. I'll stop here & get back later

I am lucky I don't have a ball game tonight . it was Jakes first day

back at school & he is in High school now too......... Gosh .How come

he is getting older & I am not????????????

OK Someone is going to write back with " BUT YOU ATE :):)hehehe

LOVE & HUGS,

GrandmomBEV