Who are you in a nut shell

[jamoncita]

seems this was re-posted a few months ago; i'm not on this site all too often.
anywho...
My name is Deirdre. Can you guess my gender??
I'm 23, 5'0 and about 100lbs.
Diagnosed at 16 and still a bit lost and lonely (no CF friends).
DF508 and unkown.
Apparently a pretty mild case from what I've read and what I'm told, but I thought I would die when I was first diagnosed, and I pretty near killed myself by failing to comply with my doctors about meds and treatments until I experienced a hemoptysis, among other things. I'm much better now.
I was born and raised in the San Francisco Bay Area.
I have a thing for SF, a thing for stepping on crunchy leaves, and an absolute passion for travel.
Currently in school and living at home. Making plans to escape again soon, this time with my man.
I often feel that my dreams stretch farther than my physical capacities will ever allow. Maybe I can prove myself wrong on that one!

 

[jenjenn]

Hi! I joined a little while ago but thought I'd finally participate in the forums. Here's a little about me and all my glory!

I'm Jen
28 years old
Live in California - the Bay Area to be exact
Was diagnosed at 15 months old because of my excessive appetite and lack of weight gain
5'0" 135lbs. (don't have the lack of weight gain anymore! lol!)
Around my 27 birthday I was tested positive for the onset of CFRD (yay.)
Have had 4 sinus surgeries (my sinuses are a nightmare, but at least the drugs they use before surgery are good!)
PFTs are around 80% and above
Work full time as a Graphic and Web Designer and pick up extra side work doing freelance
Single and ready to mingle
Have one older brother who is healthy as a horse
I live with my furry roommates - 3 pugs and a cat. Sure I'm allergic to all of them, but I love them too much to ever think about not having them.
I absolutely adore all animals
I love laughing and I'm very sarcastic
I make a joke out of anything... sometimes it can be inappropriate
I love food more than anyone probably should
I love rainy weather
Christmas is the awesomest holiday ever
I have traveled to a lot of cool places but love being at home

If you want to chat, shoot me an email! I'm always happy to making new friends.

 

[atamplin07]

Hi I'm Amy.
I'm 23
I was diagnosed with CF at 4months failure to thrive.
I was diagnosed with CFRD at age 14 yrs.
I currently live in San Diego,CA but I'm originally from Dayton,OH.
I am married to Aaron. Who is my angel from heaven.
We move around a bit cause he is in the navy.
I weigh about 107.
My pfts r in the mid 60s.
I have a thing for shopping and animals.
I just moved to san diego and I'm hoping to get to know some other cf ppl and navy wives with cf.
I have 3 dogs and they are my babies!!
I am currently in the hospital. But I'm hoping not to be here long!
I am working on getting my associate degree in paralegal studies.

**If anyone is in my area I am anxious to get to know people!!

 

[lilmac1177]

I'm also new to this site so here goes:

Hi, I'm Marcie.
I'm soon to be 34 years old (10 days).
I reside in Maryland w/ my boyfriend, Josh, and two kitties, Marlow and Mallo.
They are all the loves and lights of my life <3
I have moved many, many times in life thus far and I despise it. Yuck!
My family and friends are plain awesome! I love spending time with them as much as possible.
Was diagnosed shortly after birth, spent the first three months of my life in hospital.
I'm 5' 2" and bounce between 95-99 lbs (just can't seem to hit that triple digit!).
My FEV1 baseline is about 45% but i do okay most of the time.
I've yet to succumb to oxygen therapy at home.
I am seen in Johns Hopkins Adult CF Program (Baltimore, MD) and I can't say enuff good about my CF team!
I graduated from WVU@Parkersburg in 2008 w/ A.A.S. in Office Administration.
The YMCA of Parkersburg was my first job (front desk) and it remains my second favorite
I receive SSDI, but also work a day or two a week as an Emergency Dispatcher for Fire, EMS and Police. Love it!
You could probably classify me as a homebody ... I really enjoy being home w/ all my boys
At home I like to read, watch my favorite shows, cuddle w/ Josh and my kitties, keep up w/ FB...
I'm not a fan of cooking, but I'm getting better w/ doing it. There've actually been weeks I've cooked every nite.

Anything else you'd like to know, just ask

 

[jessykt]

I'm Jessy
I'm 33 years old
I'm married and have a 12 year old (cf-free) son
I have cf, cfrd, have had my gallbladder removed, a sinus surgery with fixing a deviated septum & bone spur
Height: 5'6 Weight: stable around 120 for some time now PFTS: around 50% right now (bounced back from 33% about 10 years ago)
I'm in the hospital once or twice a year (used to be four to five times, so that's good!)
I graduated from Colorado State University in May 2010 with a bachelor's in social work & certificate in gerontology (& currently unemployed due to most employers requiring master's degrees for social work-contemplating going to grad school)
I love to read, do crafts, learn (self-proclaimed nerd)
I do A LOT of volunteering-I recommend it for anyone who needs a "pick-me-up;" done work in domestic violence, with older adults, pregnant teens, habitat house, & many other places!

 

[Daisymae1997]

My name is Karen
I'm 40
I live in ND born and raised in MT
I was dx ~5 years
I'm adopted, but found and relate with my bio-families. I have more of a family hedge, than a tree.
I weigh 175 and am 5'5"
I recently was fired for "inconsistency" after 10 years at the same job, 15 years at the organization.
Now I work at WalMart
I've been married for 20 years!
I have a daughter that is 19.
I doubt any medical professional that tells me I'm going to die before X.
1. We are all gonna die. Life is the leading cause of death!
2. I don't know anyone who has predicted my death date correctly yet.
I've become A LOT cynical about many things.

I stumbled onto this site while looking for contact info on Beth Sufian for SSA Disability.

I used to follow a cf listserv called cystic-l (i know, i'm a dinosaur) ages ago, but well, got kinda busy with a family and career and such.

I'd love to find other CFers with healthy kids/young adults. I know I was the first cf mom at the hospital where I delivered, but definitely not the last.

I'd also love a job where I was paid to tell people how great it is to live past your expiration date multiple times. (Not long ago I was encouraged to go to a talk by a woman the same age as I am that is divorced and has no children, never has had a job other than talking about living with cf, but was described as "Thriving with CF". Geez, I thought I was already thriving...)

Like I said, I'm getting cynical.

Now, I'm going to go read the other 8 pages of introductions....Oh Good God, there is <span style="font-weight: bold;">31 PAGES of this. There went my, "I'm so unique and cool."

 

[CFtori]

My name is Victoria (you can call me Tori)
I'm a girl
I'm 14
I live in Texas
I was dx (diagnosed) at 7 years old ~failure to thrive, pneumonia, digestive problems, and tummy aches
I weigh around 105 lbs, and I'm 5'2
My PFT base line is 95-100% but they recently hit the 50s.
I recently got hospitalized but I got home an hour ago. (YAY)
I really love cats. (and dogs!)
I like to sing in the shower.
I'm single
I am addicted to facebook.
I LOVE chinese food. (had some today!)
I'm short tempered but easily made happy.
I have the Double delta F 508.
I love swedish fish, Dots, twizzlers, gummy bears, and tootsie rolls.
I LOVE LOVE LOVE meeting new people.

 

[haushinka2037]

For anyone new..

My name's Katie. I actually used to come here a lot when I was younger, but have drifted away since getting to high school. Now I'm in my 3rd year at college.
I am a girl.
I'm 20, going to turn 21 next month.
I live in Massachusetts.
I was diagnosed when I was 9 - I had a persistent cough that eventually popped a hernia. Thankfully, I have a mild case, which is actually why I was diagnosed later - doctors said I was too healthy to have CF. Thank goodness my mom doesn't take no for an answer!
I weigh around 140lbs, I'm 5'5 1/2"
My PFTs are in the 120s/130s usually.
I recently ended my internship early (I was acting as a daycare teacher) because the kids, cute as they are, kept giving me all their not-so-cute germs. I 'm very fortunate, in that I haven't had to be hospitalized in over 3 years, and have only been admitted 4 or 5 times total. Besides this internship, I'm usually a full-time college student (Psychology-Education major), and when I have time, I work as a cashier at Lowe's.
I've recently become hooked on buying old coins from eBay.
I LOVE coffee, and want to one day own my own coffee shop.
I'm dating the most amazing guy ever .... we've known each other for years, and reconnected over the summer. I'm pretty sure he's the one.
I love good music, especially Green Day (I got on stage with them last in 2010!) and Jason Mraz (I met him for my Make a Wish.... sweetest guy)
I LOVE Thai food, especially pad thai with those crunchy peanut-y things on top!
I'm overly sensitive and struggle with anxiety big-time. I've been working on it though.
I've got the double delta F508.
Life is good!

 

[samb]

I am new here and was told about this site by a girl my mom knows...

My name is Sam(antha)
I am from Edmonton, Alberta
I am 25 and the mother of 2 daughters, Cori who is 4 and doesnt have cf
and Laura who is 14 months with cf(DF508 and 3905INST)
I am looking for more info on the mutation 3905INST if anyone has it or knows anything.
Laura was diagnosed through newborn screening which is routine in alberta.
I carry 3905INST and just recently had pancreatitis and my gal bladder removed Laura's cf doc was quite interested when I told him that.
We have 16 acres with dogs, cats, and horses all of them Laura loves
My daughters are both very healthy and laura my lil cfer loves to eat ALOT! lol
She has never been hospitalized but we have been battling bronchitis frequently, we use pulmicort and ventlin 2x a day when she is healthy as well as physio and she takes enzymes.
I would love to get to know more people with cf or children with cf. If anyone wants to talk they could email me sambruder@hotmail.com

 

[Caro46]

I'm Carolyn, mom to Anna with CF, and wife to Niek.
I am South African by birth and Niek is Dutch.
I am 34. Niek is 30. Anna is 2.
We live in Cape Town, South Africa.
Anna was d'xed at 6 months with failure to thrive.
We have had 4 hospital visits - her diagnosis (no words...), 1 x bronchiolitis (relatively dealable), 1 x pneumonia (horrible and daunting), 1 x low-salt induced seizure (the most terrifying experience).
She has (touch wood) none of those permanent lung bugs yet, but has had 1 x 6 month course of antibios to get rid of an unusual strain of pseudomonas.
Anna's daily standards, apart from food/milk, are vitamins, immune boosters, enzymes and iron.
We give her physio twice a day, manually.
She loves drawing, painting, reading and music (The Beatles are her favourite, but she's starting to appreciate Bjork too).
She loves Charlie & Lola.
She's starting nursery school in the year she turns 4. Until then she's with me and her Zimbabwean nanny/carer, Phiona, who she loves.
I am a Graphic Designer working from home.
I love music - Jeff Buckley, Other Lives and Laura Marling the most.
I play guitar and can sing a bit.
I have recently rediscovered the joy of puzzles, Play-Dough and colouring in.
Sometimes I enjoy Anna's fatty diet a little too much.
I am constantly learning so much about myself through my awesome child.

 

[LizzVB]

I'm Lizz.
32 years old, diagnosed at 3.
DF508 and N1303K and CFRD
I've been married to my best friend, Terry, for almost 6 years.
I'm a caseworker at a medium-secure juvneile facility.
I'm from California, but have lived in Oklahoma for more than half my life now.
I love the ocean, traveling, animals, and reading.
I have a deep appreciation for life and consider myself very blessed.

 

[live2breath]

my name is gregory Micheal Fiegel

age-21

 

[live2breath]

my name is gregory Micheal Fiegel

age-21
dx-7 months old failer to function
I like dogs and cats
I love football even played a little in high school
fv1 65%
recently single
music is my life
I work at a cd shop and bartend part time

 

[Chelsea861]

hi little debbie, looks like we have a lot in common...
im chelsea.
26yr old female w/ CF living in Plymouth, MA.
Diagnosed at 6 months, failure to thrive.
i'm 5 feet and 1/2 inch.
Im 99 lbs. (trying to put on more weight)
im a hairdresser.
i play guitar.
i love my dog.
I love my cat.
im engaged.
not on a lung transplant list yet, in the process of getting evaluated.
Im new to this website. ive been wanting to talk to other CF patients so i decided to start blogging. Dont really know how everything works yet, still figuring this site out. i'd love to talk to anyone who feels like talking!

chelsea

 

[2DIE4Corey]

My name is Delia.
I live in Austria, exactly in Carinthia.
I work full time.
I got a cat (but I am allergic, unfortunately)
I got problems with the blood sugar, but still no medication
My lungfunction is at 95%.
I am single, got no kids.
I am 5´2, got 96 lb.
I am an only child.
No one else in my family got CF, just me.
Was diagnosed at 3 months.
Got no pseudomona in my lungs.
I attend a choir here in Austria. I´m a sopranist (u dont believe how great this is, for the lungfunction)
I am goin to the gym and doin Joga.

So far so good... would love to meet some ppl here.

 

[AndyE1970]

First post trial

 

[AndyE1970]

My name is Andy
I am 41 , diagnosed 6 months old. have Twin Daughters through invitro fertilization process. Love Sports, Traveling, Family. fev% avg around 60. On all the usual meds. First time on this forum. Have been in hospital 4 times in my life.Live in Kentucky.

 

[idkillu4adollar]

My name is Renee. I am 25 years old. I was diagnosed at 16. I was only diagnosed because my younger brother was diagnosed at 12 and so they tested the rest of the kids in my family and I won that lottery. I am SUPER THANKFUL that I have CF because it brings my brother and I closer together and I couldn't imagine us being close at 4 years apart if we didn't get to spend that one day every 3 months driving to our Doctors for a checkup and spending every appointment (check-up) in the room together making jokes and talking well we wait for the next person to come in and see us. For the past almost 10 years now! I am a pretty cool person if I do say so myself. I love to teach myself to do things like knit, or crochet, or cook perogies or make rock candy. I laugh alot. ALOT. I think i'm HILARIOUS often but only if you have my same sense of humor otherwise I'm just kinda weird seeming. I think WAYYYY to much, about a wide variety of things. Oh Stats! I don't know what most of the numbers or initials stand for, but i'm sure with time i'll pick it up. For Now.... Height - 5ft flat (noticed quite a few are small like me, so thats cool. IMO.) Weight - 93 lbs. Lungs - 103% Awesome (I think thats PFTs but not sure) The only med I take is CREON, 4 w/meals 2-3 w/snacks and just started taking vitamins but not from my CF doc. I've never been hospitalized. My mutations are R117H and G542X , so are my brother's. And I like, no correct that, LOVE talking to strangers

 

[midge90]

My name is stacey-lea
I'm from UK
I'm 21 (till april)
Dx at 6 weeks, failure to thrive
FEv1 65%
not married but been with my partner for 5 1/2 years
height 5ft 3/4"
weight 8st (51.1kg) sorry diff measurment
i'm a qualified beauty therapist
i play electric guitar
i love metal music
and piercings
i adore my cat man dude (jazz) so awesome
i love to laugh
i agree that everyone has there own rights
(each to their own)
dont like people who force their opinion though
love food
bacon, broccolli pasta bake (made by myself)
chinese food
cheese!!
i have a sister (7y/o- abbie)and a lil brother (korey) on the way (due end of march) we have different moms but still love them the same.
love to read
dont let my CF get me down, i can beat this!!
love being happy
have a sick sense of humor that can offend at times.
love linkin park

dunno in a nutshell think thats me done, feel free to PM me.
like to chat to other CFers as we cant mix.

 

[Cfteen15]

I'm Thomas
Age - 20
I'm in college to get my degree in web design/development.
I love just about anything to do with automotive, especially German cars.
I'm from St. Peters, MO.
I work on cars for fun, mainly my own (maintenance and customization)
I like computers as well.
I'm in to all types of rock.
I can have a pretty sick sense of humor, and am usually always sarcastic.
Was diagnosed at 6 weeks old with CF, with the Delta F508 mutation, and been fighting the good fight ever since.