Roll Call Please Respond

[moonshynchik]

Hi, my name is Holly. I am going to be 13 years old in Dec., I was diagnosed at 1 year 5 days old. I live in VA with my mom, dad, and two brothers(Nathan 20 and Jeremy 14). Jeremy was also diagnosed w/ CF at 3 1/2 years. I am in the seventh grade! I love to chat and talk on the phone. I have had to be home iv/hospitalized at least 35 times. The doctor is saying I might have to have iv again this month. I just came off Sept. 22. It stinks! I have a feeding tube because this past March I only weighed 35 pounds. I now weigh about 50 pounds, it makes me so happy. I am on a lot of medications every day and I hate it! I have my trust and faith in God and I thank him for being with me daily. Without him in my life and my family and friends I probably wouldn't be here. I love to swim and get in our hot tub, I enjoy being with my family and spending time with my horse Sunshine. I have met a very special friend Chris who lifts me up and inspires me daily to do the things I should be doing. Thanks Chris! I have also met a friend Amber who is in the hospital and for all you church going cfers she needs a lot of prayer. So this is me, Holly!

 

[anonymous]

Hi, I'm Kim 40 with cf. I was diagnosed late at 19 after many years of misdiagnosis. I am currently on disability, fev1 around 45%. I live with my husband of 16 years and my son who is 15 years old, they are both wonderful guys. I also have 3 cats, a house and a large garden. I love spending time with family, friends, in the garden and quilting. I live near Boston MA. Nice to meet everyone!<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[anonymous]

Hi. I'm Becky. I live in Michigan was diagnosed with Cf at age 30. Now 36.I live with my boyfriend Brian. Been with him for 14yrs. We have a cat named Sam I am.
I've been on disability for 2 yrs in March from Meijer a dept store for those that dont know of it. I was a manager. Loved it. Miss it. But oh well what do you do. I do alot of volunteering now. I love that too.
Ive never been in the hospital "Knock on wood". But have had 2 tune-ups since my diagnosis.
Ok that's me in a nutshell. Take care. Becky<img src="i/expressions/puppy_eyes.gif" border="0">

 

[anonymous]

Ok sorry bout that. HeeHHe I wanted to see what the puppy eyes symbol looked like. Totally not what I expected. HaHaaa. Becky

 

[Mockingbird]

<img src="i/expressions/face-icon-small-blush.gif" border="0"> I can't draw puppies! And I tried giving it big blue eyes, but then it just looked like it was wearing big-thick glasses, so I just tried to make it as pathetic-looking as I could. Someone really should draw a better one, though. *cough* lillith. =-) I think it would be cool, anyway. Anyone who wants to can find out how under the Forum FAQs topic under the <a target=new class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=9&threadid=3954">more emoticons</a> thread. I was really hoping other people would get in on it and not just me.

 

[Lilith]

*lol* Mockingbird, you're so subtle <img src="i/expressions/face-icon-small-wink.gif" border="0"> I'll check it out, then.

 

[ClashPunk82]

I'm Nicole, just turned 23 yesterday, WOO HOO! <img src="i/expressions/face-icon-small-happy.gif" border="0"> I graduated Quincy College as a Surgical Technician 2 years ago but became very ill after I graduated and haven't been able to work. I am on SSI and am being evaluated for a lung TX right now. I have a feeding tube and use O2 at night. I am on a cleanout right now but should be done soon. I have 2 older brothers. Steve has CF also he is 27 and Greg is mentally delayed and he is 24. My mom and dad have been married for 30 years and are the best parents I could ask for. My mom is a nurse so she takes care of all of us. I have a wonderful boyfriend named Kevin of 4 years whom I hope to marry soon. I love to read, watch TV, listen to music, go shopping. I am going to learn how to knit soon and I am about to learn Gaelic. Most of my days I just take it easy and hang out. I hope someday to travel to Ireland and Scotland!

 

[wallflower]

I'm Barb. I am 33 and live in Minnesota. I was diagnosed at 2, and in the hospital about 3 or 4 times up to the 5th grade. Everything was great from then to 2000 when I got bad pnen. and put myself out of business for a couple of months. My health is ok at the moment - no ivs for 4 yrs (crossed fingers). Been stuffed up for the last couple of weeks, but everyone up here seems to be sick in general.

I work full time as a graphic designer, and enjoy fiber art, photography and feng shui. I live alone in an apartment, and have a wonderful boyfriend of 3 years. I have an adorable 2yr old nephew that I love to dealth, and my sister is pregn. with another! I spent 8 years in college and don't regret a single year - in that time I discovered my talent for art, studied abroad in Scotland for 4 months, and joined a sorority. I have stayed involved with my sorority after school, serving as a mentor and adviser for collegiate women, and am considering taking that volunteer position to a national level (working with chapters in other states). I like knitting and can make a killer scarf (have yet to graduate to sock level). I'm also a tele-holic (HGTV, Comedy Channel and Sci-Fi are my favorites).

Nice to meet everyone! <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[anonymous]

I'm Gina, from Minnesota. I'm 22, was diagnosed at 21. I go to college, and am just half of a science class away from my AA degree (unfortunately, I'm failing and need to pull my grade up <img src="i/expressions/face-icon-small-happy.gif" border="0">isgust<img src="i/expressions/face-icon-small-wink.gif" border="0"> I live with both parents, two cats, a dog, and two horses (well, the horses don't live with me, but they wish they did!)

 

[luke]

I am Luke; I am 30 years old and was diagnosed at 6 weeks at John Hopkins. I have lived in West Virginia my entire life and probably always will. I am very happily married (just had our first anniversary) to the most wonderful/beautiful woman I know. She is a RN and takes a big part in my health. We have 2 dogs, 1 cat, and 2 fish. Unfortunately we probably can never have kids so that may be all we ever have. We have 3 beautiful nieces (2 her sister, 1 her brother) that we enjoy immensely. I have an older brother w/o CF who is getting married in 2 weeks and has been there for me every day of my 30 years. I am a Registered Respiratory Therapist and also hold a BS in Health Services and an MBA from WVU (go Mounties!). I have worked since I was 16 and currently am the area manager for the state for a home equipment company. My PFT's are in the high 60's and pray that I can keep them there. My new life goal is to live to pay off my mortgage, only 29 more years! I am strongly opinionated and very seldomly succeed in holding my tongue. I love to laugh and make others laugh which normally is the highlight of my non-wife-related day. Hard to describe yourself.. I could ramble on but I won't.

 

[JazzysMom]

I am a 37 year old, stay at home Mom with CF. I was diagnosed at Bostons Children Hospital when I was 7, but have always lived in NYS about 150 miles Northwest of NYC. I didnt attend any type of college after highschool graduation, but obtained jobs that taught me very much. I am on my 2nd marriage. I am now married to the father of my 7 year old daughter. I use to work full time at our local hospital until 1/2000 when my daughter was about 2. I got extremely sick & had to change some things in my life because I couldnt balance it all. I stopped working all together. I am 1 of 7 kids not all from the same mom/dad tho. I have been fairly healthy most of my life until this year when things went haywire, but it wasnt the "normal" CF stuff for me so I dont know how to classify my health from it. I love music (playing, dancing & singing), animals, friends, family & laughter. I have good days & bad days, but overall I think I am a happy person. I cant do what I use to so I adapt accordingly. I am very forthcoming in my thoughts unlike what I use to be. I use to be a yes person because I didnt want to upset anyone & I ended up suffering especially when it came to my Mom. One thing my husband has taught me is to speak my mind without worry. I soften it up compared to how he would address it, but I get my point across with no dispute on where I stand. Its quite refreshing! I try to help people, but I do have to admit that I am not as free with that as I use to be. I got tired of getting used. I thought I use to know alot about CF, but have found that as I get older & encounter different issues that come with age. I really only know the basics. Fortunatley I have people on here to help me keep learning! I have found that many of my siblings look up to me for strength. I am the youngest & the only one sick, but have always been the strongest. Or at least on the outside anyway. I have 4 nieces, 5 nephews & 2 great nieces. Hopefully I will have more soon because we have lots of weddings in in the future. That about sums it up. The rest you will have to learn on your own if you are truly interested. Read my postings &/or responses! Let the CF community unite!!!!!

 

[PeteRose]

My name is Rosie and I am 44 with CF. I read posts almost everyday, but I don't post very often. I live in Plainfield, Illinois (a suburb of Chicago). I was diagnosed with CF when I was 6 month's old. My family is the one that they cannot figure out. I am the 11th child in the family and I am the only one with CF. It is not on either side of the family. I also have 29 nieces/nephews and 11 great nieces/nephews - still no one else! I have the greatest husband on the planet. We have been together 24 years and I have never even once heard him complain about my coughing or anything to do with CF. (I told him that I had it on our first date) . I am now out of work on disability and I have been averaging hospital trips about avery 10 months to a year.

Rosie

 

[anonymous]

Hello, I've not replied to any topics in a long time, about 2 years, but thought I'd put something here. I am on daily reading though and felt like I should re-introduce myself. I am a mother to a three year old with CF. My name is Deanna. Matthew is doing well right now, but has had a rough time overall, hospitalized 5 times due to lung issues, pic line 3 times. Last time had the pic line in for 45 days. He recently cultured pseudomonas. So dealing with that issue right now. He is our only child. My husband and I both work full time and he goes to an in home daycare provider. I am a social worker working in an adoptions department. I am also very involved in our CF Foundation here in Columbus, OH. My husband and I are in the process of deciding whether or not to have another child. Another topic all in itself. I am 34, soon to be 35, boy time flies. Love my son to death and often look here for support and information.

 

[Dea]

Hi,
I'm 32 w/CF , married and have a wonderful 7 yr old daughter (CF free). Ive done fairly well with the CF over the years. I was diagnosed before I was 6 mos old and have the double delta F508 mutation. Over the last couple of years, however, some complications are getting worse. My lungs remain at an FEV level of about 72%, but the CF related arthritis is getting bad and also major sinus problems. I had 5 surgeries just last year....and still not having much luck with getting rid of the headaches. Ive been a diabetic for 7 yrs...this month. I was on oral meds just until this past August. Now, I'm having a heck of a time with trying to get the right dose of insulin. Ive lost about 8 pounds since April...and cant afford to lose any. Ive worked all my life...up until June when I finally just had to quit. I am trying to get disability...and so far not much luck there either. Ive just not felt well for such a long time. I couldnt keep up with work and home both. I also have a 25 yr old brother with CF...who is doing pretty well too. His lung function is still in the low 80s...and takes enzymes for the digestion. Other than that, he is doing well. Take Care...
Dea
32 w/CF in southern Illinois

 

[anonymous]

S, 27 year old male w/cf, mainly affecting the lungs, no digestive issues, minor sinus problems. Live in Newport Beach, CA. Live with my girlfriend and we are expecting a child in March, conceived naturally. Have a pretty mild form of cf, usually in the hospital every 3 months or so. since i fell in love i have been in once this year back in march(love is the best medicine). I will be heading back in for 2 days in November for a mini tune up prior to my child being born, plus my doc wants to be sure someone with cf is in the hospital when the cf accredidation team visits. In 2002 i spent 3 months travelling throughout western and eastern Europe, it was the time of my life, something I never thought possible. I ended up kinda sick towards the end, but it was worth it. I lost 15 pounds just from all the walking and freaked my doctor out, but it was nothing more than that, just walking did it. Went skydiving and white water rafting in Interlaken, Switzerland, surrounded by the Swiss Alps...most extreme 24 hours of my life! Currently work for my father's company, he is a real estate developer. I also babysit my girlfriend's niece and nephew after school for extra spending money and practice for what is to come <img src="i/expressions/face-icon-small-happy.gif" border="0">

S

 

[lovingBenandCambree]

Hi Everyone,
My name is Emilee and I am 25 years old. I married the love of my life just over three years ago. We began dating just over 8 years ago and it has been a wonderful journey. I gave birth to our first beautiful baby girl nearly 18 months ago and due to complications I am currently on disability. I am able to stay home and be with my daughter always so I love it!!!! She is truly a complete joy; starting the tantrums a little early, but we deal. I just went to the doctor yesterday afraid that I may have to be admitted. Fortunately my PFTs were doing great and so far I am still home. I have been out of the hospital for a record of 5 months and counting. It has been nearly 3 years since this has happened. It is awesome. A little more info about my life, my parents divorced when I was 5 I have two older brothers with those parents one has CF and is doing great. The oldest does not. My parents both remarried and I now have a combo of 6 sisters and 4 brothers. It is very unique but I love them all. I graduated from Weber State University in Ogden Utah 3 years ago with my Bachelors in Psychology. I would love to get my masters but am trying to be the best mom I can be right now. It is very fun to get to know all of you on at least some level and I have learned much. Thanks to you all!

Emilee

 

[JennifersHope]

It is so great that so many people responded. I love reading about people and how everyone is doing. It makes me feel like I am not alone in what I am doing or feeling.

Keep the responses coming.

Jennifer
32 w/ CF and Addison's

 

[cheynne]

Hey, I'm Cheynne, 18, and am studying marketing at university. I Have just started making enough money to move out, so am looking for my own place...can't wait ! I live in a very quiet town with lots of outdoor activities, such as fishing and hunting. I have a great group of friends who always insist on doing something fun every weekend, be it going to the casino (roughly 50km away), playing paintball, skiing, or playing golf. I also enjoy reading and writing, and run a few websites for residual income.

 

[mare]

I am one of the oldies too. 51 this year. work part time as a lab tech in a hospital (cepaciagal, I think we know each other)...
work on computers on the side. Have had a rough year with Asthma , lung infections and breast cancer. Got married this year, now have a 14yr old step daughter. Have 2 cats, one dog and a tropical fish tank. Use this forum to gather information, to try to help myself maintain.

 

[anonymous]

As an adendum to my previous post, my girlfriend and I just got back from our ultrasound appointment and found out we are having a girl! It's funny because all we had been talking about were girl names and decorating ideas, I guess you just get that feeling.

S