Roll Call Please Respond

[JennifersHope]

Okay I do this on Cystic Fibrosis 2 Chat every once in a while and it is alway so much fun. I am not sure if this should be in off topic or not but it is CF related because it is about us. I was wondering if we could do like a memeber/reader roll call, it is great for the newbies to get to know us and I just love hearing how everyone is doing.

So please respond if you would..

I pretty much have been very vocal lately in the things that are going on with me so I will keep it short. Wating to find out about IVs, I have clinic on Wed and I will see if I am going in the slammer or not. If not I have lots of great tips for home IVS.

School is the hardest it has ever been for me this semseter and I am really run down, I can't wait to be done just 8 more months and I will be done.. wahoooooooooooooooooooooooooooooooooooo...

Oh I should introduce myself in case there are newbies. My name is Jennifer I am 32 soon to be 33, I live in NJ, I have CF, Addison's disease and about a zillion other things wrong related to the two. I go to school full time and work part time. I live at home with my parents, and outside intrests apart from school is working with the kids in my church... I adore them and can't wait till I am done with school to hang out with them more...


Thats it for me...

Hope lots of you reply,

Love,
Jennifer

 

[Diane]

I'm Diane 40 with cf, diabetes ( 25 years ) and b.cepacia (8 -1/2 years) Health at the moment is stable thank God ! I live alone with my 4 cats ( 2 indoor, and 2 outdoor strays), 8 iguanas and a skink. I have a muscle car and really enjoy the heck out of it. Took 5 years to build it to where it is today. I am in the "Northeast Muscle Car Club" and enjoy hanging out with my car club friends at car shows. I work part time, and am on disability. I guess thats about it in a nutshell....

 

[NoDayButToday]

I'm Coll, 16 wcf. I'm a junior in high school, and I live with my mom-- just the two of us, which is nice. I manage my school's field hockey team in the fall, and softball in the spring, I'm in the school band, and on the speech and debate team. I also am in the Italian cultural club (I'm not Italian, but I take the language at school), would be in the Celtic Club if our advisor wasn't on paternity leave LOL, and have my eye on a few other clubs. I love hanging out with my friends. I haven't been posting too much, I've been very busy!

 

[NoDayButToday]

Jennifer, how is your mom?

 

[spicyone18]

Hm I am 22 w/cf, I live on my own with my dog Joni and we live in Texas. I am on disability but I also babysit/Nanny for many families. I also work with the T&T Girls at AWANA with my church. So I love working with kids. A general night out with my friends would be karokee, bowling, pool or putt-putt! I love hanging out and having fun!

 

[JustDucky]

Hi Jenn, I like it when you start the roll call too. I am relatively new to the board, I am 33 going on 34 in Dec, just diagnosed with CF. I have several other issues as well, I have what the docs now call distal muscle dystrophy, and as a result, had early respiratory failure and now reside on a vent. I don't regret it, I am still here for my kids. I didn't like the alternative. I enjoy reading.....everything from medical journals to science fiction. I love my computer, have two wonderful children ages 11 and 13 and currently live with my awesome mom. I am not much of a TV person....I worked as an ICU nurse before becoming disabled (couldn't walk and breathe at the same time) and loved it...you will too Jenn!!!! That's me in a nutshell!

Jenn (Cepaciagal)
33 w/CF and pancreatic insufficiency (recently diagnosed)
Distal muscular dystrophy, vent dependent
And all sorts of other auto immune issues....Boy...did I fall into the wrong end of the gene pool LOL!

 

[Emily65Roses]

I'm Emily, 21 with CF. I live at home with my parents (my mom is on this board a lot), my sister Jody, and my father's mother. I'm currently between schools, as I took this semester off, and will be going back in the spring to a different school. I'm transferring and all that good stuff. Before, I was an ASL interpreting major, but I'm switching to social work in transferring schools. I weigh less right now than my doctors would like, but I'm trying to gain. I just finished IVs on... Wednesday. I've been with my boyfriend Mike for over two years now. I sit around most days, living on my laptop, watching TV and movies, listening to music, reading books, playing internet poker, and spending time with Mike when he's not busy. Haha.

 

[EB24]

I'm Eric, 24 with CF and Cepacia. Had a relatively mild case of CF with more GI issues when I was younger, but since cepacia my lungs have suffered. I ussually manage to stay out of the hospital except for 2 tune-ups a year. My worst problem is stomach aches and not gaining weight. I got married when I was 19 and got divored because my ex said I wasn't sick I was just "lazy". Now I live back at home with my parents and I am on disability.

 

[Lilith]

I'm Lisa, 19 w/ CF, borderline diabetic. I was diagnosed at 3 years old and managed to stay out of the hospital until I was 12. Now I usually do home IV's via MediPort every 3-4 months (though I've managed to stay IV-free for 8 months now!). I live in Florida with my parents and my sister (non-CFer), plus two adorable cats. I graduated cum laude (sp?) in high school and am now working on getting my degree in Web Design and Medical transcribing from home, and I'm on disability. Currently single, but still friends with my former beau. I love to write and draw, and was part of the Art Club at my high school. I'm into horror, fantasy, and sci-fi. I'm also an anime fan and when I'm not reading Anne Rice, I'm reading a manga (Japanese comics). I enjoy goth rock music (i.e. Korn, System of a Down, NIN). I also spend most of my time on my computer, which my mother hates ^_^;

 

[Mockingbird]

I'm Jarod, 23, and living allllll alone in Denver, which is exactly how I like it (not the Denver part, the all alone part). Well, I guess I do have my cat, Wren. Anyway, I have a part-time job as a cook in an assisted living facility. When i'm not doing that I'm either writing or reading my stuff from a street corner downtown. =-) and now i will shamelessly plug my website: <a target=new class=ftalternatingbarlinklarge href="http://www.c-mockingbird.com">www.c-mockingbird.com</a> I know I'm not the greatest of writers, and I don't expect to be. =-) I only want people to read and have a good time with it; like watching cartoons. Oh yeah, and I love cartoons, as well.

 

[julie]

Julie 22- wife to Mark 24 with Cf who will be 25 in 13 days. We live in San Diego right now and are in the middle of a heat wave-whats up with this weather anyways? Mark will be graduating next May and is hard at work right now. We are really busy getting ready for our move in December, trying to find a place in Washington that will take us with our zoo. I had a great time yesterday and some of this AM babysitting my friend Heather's litte girl, Alyssa who is 5 months old. She spent the night so her mom and dad could have some time out together. She is such a sweet little baby, I hated to give her back. I love kids, can't wait until its my turn. Other than that, I have spent the day cleaning the house (actually scrubbing the walls from where the dogs rub up against it) so the landlord can inspect it before we show it to new prospective renters-not too fun.

I like this roll call thing, it's nice.

 

[kybert]

im kylie 22 wcf. i live in perth, australia. dont go there its very boring, please go to the eastern states. im currently on disability and dont work because i have problems with fatigue which no one can seem to figure out. i have an akita called kuma, a maine coon called pepe [who i dont like much and who broke his leg last week. dont worry, we got it fixed!] and an rspca moggy called pheobe. im mad about akitas. if i had the energy and money i would show and breed them. i like shopping, makeup, animals, shopping, designer jeans, going to the dog beach, good food, shopping, summer, internet, battlefield 2, people who arent depressing and shopping.

 

[TCNJcystic]

I'm Steve. Still new here. I'm a music education major at The College of New Jersey. I spend way too much time playing music, specifically the saxophone. I'm really lucky to have lungs that let me play a wind instrument right now, and I recommend to any parents of young Cfers that they make their children play a wind instrument because it's the best excercise the lungs can get.

 

[JennifersHope]

Thanks so much for responding !! I was so excited to come home and see everyones post. I have seen many of your sign your names to post but didn't really know that much about you. This is fun... I hope lots more ppl respond. I saw in another post how someone said we are like a family, and I think that is kind of cool.. It is so nice to have you guys to talk to in addition to my friends and family

Sounds like most people are doing pretty well right now.

Julie... I know you are going to have a baby some day .. I just know it.. your determination alone is enough for me to believe it.. plus a little prayers never hurt...

Coll thanks for asking about my mom.. She sounds good on the phone.. ( for those who are lost my moms husband was just killed in a plane crash) She has signed up for some type of walking club, and also some church activities. I am not sure if she is in denial still.. since I am the queen of denial and you know what they say about the apple.. but anyway she has plans to come up soon.. The funny thing is.. I have never been close to my mom, we are just so different and something happen when I went out there to be with her.. I fell in love with her... I really can say that I love my mom so much.. so even though this was a huge shock and horrible for my mom, somehow good came out of it already.. we are closer..... and I am happy about that.

Thanks for asking... Please keep posting....

Love,

Jennifer
32 w/CF and addison's

 

[Liza]

Hi, I'm Liza. Mom of two teenage daughters with CF.

My oldest is 18. Away at her first year of college. We hoped it would go smooth but so far we haven't been so lucky. She got very sick very fast, just three weeks after leaving her off at school. Now just a couple of weeks later she's got the flu! And she's 10 hrs away. She was in the dorm (single rm) but now is in the campus apartments (w/roommate).

My youngest is 15. She is doing very well. She's been hospitalized twice in her 15 yrs.

We are retired USAF. I am a stay at home mom. There was no history of CF in either families. Our oldest was diagnosed just two weeks before our youngest was born.

I want to add that this site has been a godsend. You all have helped in so many ways. I don't post often but I read alot.

Liza
(mom of 2teen girls w/CF)

 

[anonymous]

Hi, Im melissa... im 26no cf i just had my 6th yr wedding anniversery yesterday (weve been together for 11yrs.. whew, lol) i have 2 boys dylan is 6nocf and just started 1st grade and currently is a pain in the butt to get out of bed because he'd rather sleep in than go to school.grr then there is caleb he is 4wcf and is currently doing good (knock on wood) he had a interesting summer, he broke his wrist on the day of his birthday so he was in a cast for a while, then about 2weeks ago he had to have his 2 top front teeth out (what a nightmare that was). umm he just started going to preschool 4 mornings a week and he also has speech therapy 3 times a week so im pretty buzy being taxi mom. i think that is just about it, nothing too exciting in maine right now.. hope everyone is well <img src="i/expressions/face-icon-small-smile.gif" border="0">



Melissa mom to dylan 6 no cf and caleb 4wcf

 

[senatorgraham]

Good Topic.

I am Steven John Graham (Always so many Steves). I am 31, with CF. I had a Bi-lateral Lung Transplant in 2002 and because of the wonderful steroids I am on have been privileged enough to develop Diabetes-good times!!!

The most important thing to me is my family and friends. Espically my little girl Sasha (Princess Pretty Girl), she is my German Sheppard but for all intense purposes my little girl, although most people tell me she's not so little, lol!!!

I was lucky enough to get a Scholarship through Solvay and am currently attending Law School. My long term goal is to become a powerful voice for CF. My passion is public service and am looking very seriously at a run for City Council right now. Last year I served my class as the Student Bar Represenative and was awarded Student of the Year for my class.

I served 3 years as a student senator as an undergraduate, hence the nickname "senator" and earned my BA and Masters degree in History with an emphasis in Constitutional History. I was also a Ken Maddy Fellow at the Maddy Institute of Public Affairs, well I could go on and on but why bore you all.

Hobbies. Hmmmmm. I will get back to you guys on that.

Glad your mom's doing well Jennifer.

Hope everyone keeps contributing to this.

Sincerely,

"Senatorgraham"

"My friends are my estate. Forgive me the avarice of hoarding them."-Emily Dickinson

 

[nobody]

Hey all,
Steve from Virginia, USA - 38 y/o diagnosed @ 25. I live with my wife of 15 years and 4 cats - 1 dog.
I typically go in for a tune-up 1-2 times year, with little problems between (thank goodness).
I work full time in the office of a construction company. I don't get the opportunity to post often,
but try to keep up as best as I can.
This is a very good way to get to know everyone, to a small extent anyways, thanks!
-steve

 

[EmilysMom]

I'm Emily's Mom (several posts back). We have beenliving with CF for almost 22 years. Had no family history. We also live with Vonwillebrand's Disease (Em's sister) and Parkinson's (Em's dad) It's a really fun household. ;o)

 

[rose4cale]

Hi I'm Shelly. Mom of Cassie, almost 6 no CF and Cale almost 3 with CF. I'm a SAHM now for a little over a year. I am doing daycare now with a 1 year old and I had a call today... I will have a newborn in Nov (not born yet) and a 14 mo old boy in Nov who will be newly adopted. I also got a night job this week to get out of the house a little and we also do vinyl graphics from our home. My husband and I have been married for 12 years now. I got married at the tender age of 19 and everyone had us 'divorced' before I turned 21. haha...we showed them! He is a 'butcher' now for over 20 years (we prefer the term 'meat manager'). We live in Iowa so we know our livestock and the meat business is a good business here! We are a busy household, but we wouldn't have it any other way.