Who are you in a nut shell

T

tarheel

Guest
who are you

My name is April
I'm a girl
I'm 16 yrs old
dx at 7 wks with failure to thrive
I live in PA near philly, born in NC near Raleigh
I'm 4'11 and 110 lbs (final height- done growing)
I culture pseudo, mrsa and stenotrophismultiphelia (opprotunistic thingy)
dont have a job- sophomore in HS- class of 2011!!
Want to go to UNC main campus for college
I have 4 pets- a portugese water dog and three cats
I love to read
I was into the twilight series before anyone else discovered it (but not too into it now b/c so many ppl are)
my fev1 is usually around 70 when I'm doing well
my friend and I want to start a fashion company!
I love to express my opinions on anything from politics to style
I know I have one DF508 but forget other mutation
no others known in family to have it- but we are decended from immigrants from a region in europe that has legends eluding to cf starting around the year 400- Denmark/ Scandanavia
I don't identify myself with any one particular religion at this point- go to church but fed up with how hypocritical it all is.
I believe in Karma
I believe in John Lennon!
If I were born a generation earlier I would have been a hippie
I am in Amnesty International
I love w00t.com -awesome site!
I still have an account and play occasionally on runescape
I am the only one of my friends not to have a facebook or myspace
I love to eat out.
my favorite fast food restaraunts are mcdonalds but most of all chick fil a
I have five different pant sizes in my closet.
Right now I am a size 2
my favorite store to shop for clothes at is old navy
I'd rather have cash or checks than gift cards for presents
I love country music
my first favorite artist was shania twain- back when she did country
I think the ipod touch really is the funnest ipod ever
i love my hp laptop
I run every computer I own into the ground with all sorts of crap- but they still last longer than anyone else i kno's
I think wireless internet is better than sliced bread
the first tv i remember we had (til i was 6) didn't have a remote
I'm really modest in the way I dress (not jus my opinion)
I don't like wearing shorts because of streatch mark scars on my legs
I only play gituar hero and pokemon video games (on PS2 and gameboy advance)
I think smokers should go to hell in a handbasket
I love seafood
My first crush was on Jack Skellington from the tim burton movie (when I was 4)
I love tim burton movies!
And I think that's all the fun random stuff I can think of to say as me in a nut shell.
 
J

JessicaMaria7

New member
who are you in a nut shell

my name is Jessica
i have never posted on one of these before.
i love Jesus, He is my Rock and Salvation
i will be 27 in about 3 weeks
i was diagnosed at 6 months...kept getting sick for no reason
i weigh between 110 and 120 pounds
i am 5'2"
my pft's are in the 50's.
i work part time at an office
i sing and play the guitar for my church
i am currently single
i have a husky named sierra
i am half spanish...my mom came over from spain
i consider it an honor to be able to show the strength of God through what some perceive to be a weakness!
i have tough days, and i have wonderful days.
the hard days make the ordinary days extraordinary!
one of my genes is DF508...i don't remember the other one.
i had a massive bleed this past summer which took 2 embollizations (sp?) to stop.
i have a wonderful doctor who treats me like a person and not a number or a sick person.
i am a member of a great christian church.
my favrotie thing to do is worship God through singing and music!
i have always and curretnly live in Connecticut.

nice to meet you all =)
 
G

Gnome

New member
who are you in a nut shell

My name is Nomi
My kids Sophie age 1 and Ian age 3 have CF
I live in Calgary Canada. Ian was diagnosed because of failure to thrive
I have a German Russian background my husband has a Polish Irish background
My kids don't really have any health cares at this time although I understand the disease is progressive.
I hope PTC 124 drug that target stop mutations will be everything I hope it is.
Before kids I used to run marathons and do half ironmen. Haven't been able to do things like that since I've had kids.
I used to work as a draftsperson before kids
My sister won an Olympic gold medel in Nagano in curling. I am a pretty decent curler too.
 
L

Littlemiss

New member
who are you in a nut shell

Hi I'm AJ
I'm a 27yo Aussie chickie with CF (+CFRD early stages and Asthma, PA)

I am married (7 years) and work f/t as an pead occupational therapist
I love classical music, reading, writing, sudoku, painting and chess. Tim Tams, chocolate, ice cream..........

We are hoping to have a baby this year but having trouble getting pregnant

I have three brothers, D is 29 w CF, S is 12 w CF and Dx with type 1 diabetes in December 08 (not CFRD) and J 10 w/o cf.

CF wise I have only had one admission in my life and doing pretty well with FEV1 holding steady at about 85% last four years or so. Got the CFRD Dx 3 years ago, Dr told me I would need insulin within 12 months, but I'm still going well with just diet control {though not as many Tim Tams as I would like - sigh}

I think this message board is fantastic, great to have some more ppl to ask questions to, esp girls who are going though the whole trying to get pregnant thing, it's a bit scarey to do alone :)

AJ
 
S

Someonelikeyou

New member
who are you in a nut shell

My name is August
I'm a girlie girl
I'm 28
I live in freezing cold Maine
I was diagnosed at 4 months with an obstructed bowel
I weigh around 125 lbs, and I'm 5'2"
I envy the cfers that can eat anything and everything,I used to be like that but since I became diabetic (age 15) I can't anymore.
I am on disability but I work part time as a nail technician.
I am hopefully going back to school soon to become a paralegal.
I love the beach.
I am divorced but have a fantastic boyfriend now
We have many pets.
I like candy a lot but I'm diabetic so I try to stay clear
I love to exercise
I'm a shy person, but once you get to know me I open up.
I love reading, writing and music.
If you have any questions just ask me.
 
E

Emmeline

New member
who are you in a nut shell

Emmeline
First time here
Female
25 years old
Dx: 3 months for getting pneomonia twice in a row
Six kids in my family and I am the only one with CF
I weigh 112 and I am 5'3
Married to Kyle, the greatest man in the universe!
We have a dog (a mutt known as a puggle): Cassius
Currently we live in Utah, but I've moved almost as many times as years I am old
Pfts: Down from normal, but in the mid-60s for FV1
I love to cook, and I am pretty good if I can say so myself
Currently working but only part-time
I love reading
I should excercise more
I love to laugh
I love the color purple
And I just got my ears pierced
 
C

CFSammi

New member
who are you in a nut shell

I am Samantha
I am 17 year old female
I like to sing and hang out with random people
I have a boyfriend, he knows i have CF and he supports me with everything i do and he is always on me about my treatments and medication and he is always naggin me to be a goody two shoes lol but thats ok cause i still love him, we have been together almost 2 years on 4th of July ^.^
My favorite thing to do would have to be going on myspace.
I love the color purple its the bestest color ever.
I love talkin to others with CF whether their my age or older or even younger.
I have alot of friends that really care about me.
I try not to let the little things get me down and if they do i dont ever stay down. Other than that i dont know what else to say...
Im home schooled recently and i HATE it so far other than that everything else is ok...
 
R

rml4589

New member
who are you in a nut shell

Hi Everyone

My name is Randy and this is my first post here!
i'm a guy
i am 19 years old and live in Swansea massachusetts.
I was diagnosed with Cystic fibrosis at around 6 months old
I weigh about 120 and am 5'8 (gotta work on that weight :( )
I go to school full time and work about 30 hours a week at a pharmacy
I don't let CF get to me and I never will
I love hockey and baseball
I LOVE to cook. I have always had to cook my own high-calorie meals so I learned to cook at about 11 years old and haven't looked back since!
 
V

vladober

New member
who are you in a nut shell

Hello, my name is Vlad
I'm a single male
I'm 29
I live in Bucharest, Romania
Dx at 8 weeks, my mutations are F508del (Df508) and W1282X
I weigh 50 kg (fully clothed :D) and am 169cm in height
I did some college (journalism) and have some disability and whatever else comes around
I have a she dog, a stray called Tzu-tzu
Love pizza and Pepsi Twist and Earl Grey tea
I like sci-fi shows (Star Trek and Fringe), CSI, House MD, soccer and wrestling and I read a lot
I'm clever, fatalist, deep, sympathetic, generous, loving and very perseverant in proving my view point :D
 
J

JazzysMom

New member
who are you in a nut shell

WELCOME to the newest of newcomers!

FYI we have a chat in the ADVANCED CHAT just about every night around 8PM Eastern Time......

Come Meet & Greet!
 
M

marissg

New member
who are you in a nut shell

My name is Marissa, I'm 27 and was diagnosed at about 3months.
Some facts about me:
I just got my Bachelor's degree in Social Work.
I am relatively healthy and believe that it has to do with my use of natural medicine.
I love green tea, my strange cat azrael, and am fascinated with astronomy and cosmology.
I don't want to have children, but I enjoy being around other people's kids.
I've had pseudo a since I was 7 years old and have had sinus surgery once.
Most of all I'm hoping to find a decent job now that I'm finished with school, but that's just not happening.
 
B

beckysue

New member
who are you in a nut shell

Hi all!
I am so glad to have run across this site and wish I would have found it a LONG time ago! I think I've really been missing and needing support from others in the same boat. So here's my About Me:

-My name is Becky
-27-years-old
-Dx at 5-months-old w/ failure to thrive
-120lbs. at 5'1"
-Delta F508
-CFRD since I was 14
-Current PFT: FEV1 is 36%
-My first love is Jesus. He's my Lord and Savior and I wouldn't be here without him. For a reason that only he knows, he's spared my life more times than I can count. I'm am constantly making mistakes and wrong decisions, but am learning to be more like him everyday.
-God blessed me with an amazingly wonderful husband, Jake, who takes incredibly good care of me (This year will be our 5th anniversary!)
-I was a gymnast for 12 years (5 of them competitive) and quit only after hurting my back. I think all that movement kept me out of the hospital for 8 straight years.
-I'm really shy and reserved...until you get to know me :)
-I'm a game-aholic :) I collect board games, especially, but I really like any kind of game (board, card, video, computer)
-We don't have any kids, but have 4 nieces, 1 godson, and another godchild on the way
-I have the greatest friends who are constantly praying for me and loving me.
-I love to travel but it's become very hard to do in the last few years.
-I'm 99% sure I want to get a double lung transplant but am still checking it all out.
-I've had a bowel obstruction, anaphylactic shock from an antibiotic (on a vent for 3 days and by a miracle of God came off of it), a kidney stone stuck in my ureter (which required 3 surgeries, including a nephrostomy bag for 3 weeks) and one in the other kidney that's 1/2" by 1/2"...all CF related and all in the last 3 years. I was serious about God sparing my life a lot :)
-I work part-time as a payroll clerk. My co-workers are awesome! They send me a care package almost every time I'm in the hospital and it always cheers me up!
-I watch too much TV (favs of all time: I Love Lucy and M*A*S*H) and love movies (fav is While You Were Sleeping), but am really getting into reading since it's a great distraction at the hospital. Currently, I'm addicted to Karen Kingsbury books. She wrote one about a girl with CF and that got me started on her books.
-I've lived in the same town in Illinois since I was born except for about a year and half when I lived in the next town over.
-I LOVE to laugh...definitely the BEST medicine :)
 
G

guitarboy

New member
who are you in a nut shell

My name is Steve. I turned 40 a month ago, though I am frequently mistaken for a twenty-something.

I was diagnosed at birth (ball of waste surgically removed). They told my folks I wouldn't live to be 2. Then 5. Then 8. Then they gave up and I'm still here.

I'm 5' 10" and 160 lbs. This is heavier than I've ever been. I gained 15 pounds in two months after my hospitalization because I recovered so much lung function.

My PFT baseline is around 62.

I don't know my mutation yet, though that is in the works. I must admit I rather like the idea of being able to declare myself "mutated." From this you can guess my reading diet as a boy.

I've had a fairly mild case (or been very lucky) thus far. My first hospitalization for a CF exacerbation was just last year. Everyone was very impressed.

I live in Portland, Oregon, but I grew up in Cincinnati, Ohio. My CF doctor was Robert Wilmott, whose name I see in the literature now and again.

I married Heather in August of 2008. We are child free but for a pug and a cat. Sadly, we had to give up our (8 month-old 60 lbs and growing) puppy because we're both disabled. She kicks my butt about compliance far better than any doctor ever could.

Since 1995 I have designed and built web pages for a living. Right now I am overseeing the construction of the website for a local chain of appliance stores.

I have played guitar in rock and roll bands (along with a ska band and a funk band) since 1988. Over the years I've released/been involved with ten albums. I also have poor hearing. I wonder if there's a correlation?

I have written three novels, with more in the works. One was published by a small, co-op and failed press. Another is a collaboration with a famous fantasy writer currently being shopped. The third needs revision!

Though I have tapered off recently, I became fond of building Telecaster and Stratocaster guitars instead of buying them. Someday I will get back into it and refine my skills.

My routine consists of pulmozyme, tobi, the vest, and some experimentation with hypertonic saline. I treated myself to an xbox 360 to pass the time on nebs.

I developed osteoporosis in my spine and hips from years of malabsorption. This makes me feel creaky.

While living in Cincinnati, I saw Boomer Esiason eating at a local restaurant with his family.

Other things I like: reading weird fiction and non-fiction, the occasional sci-fi tv show or movie, loud and strange rock music from the 70's and 80's, designing book and cd covers, talking like an idiot to my dog, teaching myself to take it easy for the second half of my life.

I look forward to participating in this forum! Back in my day, we didn't have fancy things like internet forums to compare our treatments. We had telegraph machines and carrier pigeons, and we LIKED it. Kids these days...
 
J

jdkeep

New member
who are you

I'm just a "mom" as well, but I'll introduce myself...

My name is Darby

Mom to Brady (5 months old, diagnosed when I was 5 months pregnant)

Married for almost 7 years

Navy wife

I live in Virginia

New England Patriots & Boston Red Sox fan!!!

I have 3 dogs... miniature dachshunds
 
L

Laemia

New member
who are you in a nut shell

Hello all I'm new so I'll try to remember all I should answer....
I'm Misty Dawn
I'm female and 36
Diagnosed at birth because I had a brother 6 years older with C.F. who passed away at 2 months.
Diagnosed with Diabetes at 24.
Live In Las Vegas, Nevada and wish I could move.
My PFT's aren't as good as they used to be but are alright.
Height about 5'5 weight about 103.
I need to exercise more.
I've always had more intestinal problems and would like to talk with other C.F. people who do. My doctors only know about C.F. lung problems. At least for the past 10 years I consider my C.F. clinic a pulmonary center that specializes in C.F.
I live for my animal and insect conpanions.
 
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troyD

New member
who are you in a nut shell

hi everyone!
i just joined tonight!
This is great i actually get to visit with people like ME!
I dont feel like im on an island all alone anymore!!
I'm Troy DeLois
I'm Male and will be 36 on april 2!
Had CF since birth
I am 6'1 160 lb's
I am very lucky to be alive and treat everyday like its a gift!
 
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