#CFMama

Growing up with a mom with CF, Anna doesn't think twice about me doing my treatments throughout the day, or when we go somewhere for the weekend, and I love that. Sure, one day she'll realize that not all moms do a Vest or many nebulizers a day, and she'll have questions and may even be embarrassed, but I am prepared to be open and honest with her. But for right now, I am going to cherish her sweet innocence, and company, while I do my treatments every day (even if she does get in the garbage or throw my medicine vials all over the floor).

Anytime Anna is home or awake when I'm doing my treatments, she always has to come check in with me.

It may be for a quick minute to read a book next to me or what silly stuff she's up to:

 

It may be to climb on anything and everything in our hodgepodge office:

Or it may be to sit, shake or do medicine with me:

 

She was saying "ahhh" listening to her voice vibrate

Mommy always has the better medicine ;)

Even when she's playing, I know she's watching me because as soon as I'm done, she'll want to get in my chair and do what mommy's doing.

Just taking a little puff of Dulera

Anna pointed to the chair and said "up". When I sat her in the chair,
she tried to pull the Vest onto herself. After getting it on, she grabbed my
Cayston neb and put it in her mouth so proudly :)

Having a CF mom isn't always going to be easy, but I hope that in her seeing me do my treatments day in and day out it'll teaching her determination, respect for her body, and to see how much I will do to keep myself healthy to be the best mom for her.

CF Awareness Month Blog #29 - My Wish For CF

"My wish for you

Is that this life becomes all that you want it to

Your dreams stay big

Your worries stay small 

You never need to carry more than you can hold

And while you're out there getting where you're getting to

I hope you know somebody loves you

And wants the same things too

Yeah this, is my wish." 

~Rascal Flatts~

I love this song by Rascal Flatts (one of my favorite groups), and I really think it applies to this blog topic as well. Of course we're all wishing for a cure to be found for Cystic Fibrosis! That's the whole point of spreading awareness, donations, Great Strides, etc.

But in the meantime, I feel it's very important for those of us affected by this disease to stay as positive and hopeful as possible. I know that it's not easy everyday, but we cannot let this disease define who we are or negatively take control of our lives. Look into your future and plan for it, live your life!!! Who says that you can't do what other people do? CFers do it all the time!

And remember that there are so many people that love and support you!! Whether it's your family, friends, co-workers, or members of the CF community, we're all in this together! So until we reach that day that CF does stand for Cure Found, we need to remain positive, strong, happy, grateful for the life we have, and keep spreading awareness and raising money to find that CURE!

CF Awareness Month Blog #25 - CFF

I would not be where I am today without the Cystic Fibrosis Foundation. Since CF is not a federally funded disease, all research is completed off of the money received from donations. The CFF funds most research that is being done to help cure this disease. On their website, you can follow new drugs as they make their way through the pipeline, which for me, is very encouraging to actually see the progress being made! So many of the drugs that are "To Patients" are ones that I am currently on that are helping to keep me healthy so that I am able to live a normal life. Thank you to anyone who's ever donated to the CFF and thank you to those who are working at the CFF and/or doing the research to help keep me alive.

30 Days of Blogging: Day 20

Day 20 - The meaning behind your blog name

Well, the blog started out as "How I Live, Laugh and Love with CF" because I wanted to go off of one of my favorite quotes "Live, Laugh, Love". I wanted to show people out there that it's possible to live a 'normal' life despite having CF and how I make it work. I like to try to mention one of those words in every post to try to tie it in all the time, but it doesn't always work.
After I had the blog for about nine or ten months, I noticed there was a big focus on my CF in the blog (which is what I wanted), but I wanted the title to be something not blatantly "CF". So I played around with some things and came up with *Live*Laugh*Love*Breathe* because not only am I doing the first three all the time, but my other major focus in life is to breathe as deeply and best as I can - I just thought it was very fitting for me. I've grown to absolutely love this phrase and I wish they made things in stores that had "Breathe" tacked on the end of it, too...but Tim says we have enough "live, laugh, love" stuff in the house already! :-)
I always want it to be a constant reminder to myself (and him) that that's what life's about: living life to the fullest everyday, laughing things off and not taking them too seriously - basically, just relax!, loving each other through everything, and breathing deeply & being/staying healthy.

PS: This is my 100th post - I think this is the perfect topic to sum it all up so far! :)

30 Days of Blogging: Day 16

Day 16 - Describe a passion you have

When I see this, two things come to my mind automatically: 1) Teaching/Education and 2) Spreading awareness of Cystic Fibrosis.

Teaching/Education: I graduated from college with a degree in Elementary Education in 2010 and I have yet to find my first teaching position, but have been a teaching assistant for the past two years. It's not quite the same, but I know that I'm in the right field. I love working with kids everyday whether they're five or ten, special ed. or regular ed., I've worked with them all. I don't refer to my job as 'work', when I say I'm leaving I say that I'm going to school - it just doesn't feel like 'a job'. Yes, some days are tough/hard, but then I think about what I'm doing and how we all have good days/bad days, I try to go back the next day with a better attitude.
I love watching students learn and grow, especially the younger ones because everything is new and exciting to them. I wish I got so excited that I jumped up and down anytime someone understood what I was saying, or because I had a banana in my lunch, or because a staff member is wearing a hockey shirt - they're just so fun!! The absolute best though, is when you know they've been struggling with a concept and then there's that one day when they finally 'get it' and you just watch their face light up! Priceless. I cannot wait to have my own classroom one day so that I can make an impact on more than two students per school year. But until then, I'll just make the best out of what I have and work with the best staff ever!

Spreading Cystic Fibrosis awareness: This is something fairly new that I would say I'm passionate about because I used to only tell the people I was close to about my CF. I never know how people are going to react when they find out about my CF - sometimes they ask questions, sometimes they get that face where you can tell they feel bad for me, sometimes they just nod, walk away and go research it - I think it's different for each person and the situation. Personally, I'm not afraid to answer questions about it when people find out - I'd much rather they ask me than go looking online at worse case scenarios and freaking out and thinking that I'm going to die. Don't tell me you feel sorry for me either - I haven't encountered this one too much before, but sometimes I can just tell by the way people look at me that they kind of feel bad for me - don't. This is something I've lived with my whole life, I don't know any different, plus there are many, many people who are worse of than me, and I'm doing the best I can with what I've got and that's just life.
I've also been really trying to spread awareness of just CF in general. I really don't like that a lot of people don't know what CF is because they've never heard of it. I wish there were commercials on TV promoting awareness, especially around Great Strides season. This is a disease that affects so many people, young and old (yay for the old people!) and it just needs to be brought to attention. Thankfully, with all of the recent drug developments, I think the word is spreading a little more. I hope to be spreading awareness about CF to pretty much anyone I meet (I'm not talking about the cashier at Target or Walmart) but the people that I work with, and all of my family and friends because chances are they'll tell someone else and the chain keeps going and eventually it won't be, "Cystic Fibrosis? What's that?" It'll be "Cystic Fibrosis, oh I work with someone who has that, she's doing so well (or whatever they'd say)."

There are other things that I'd consider myself passionate about including taking care of myself and my relationship with Tim. They kind of go hand in hand because I want to take care of myself so that I can live as long as I can to be with Tim and hopefully have a family. I take care of myself because I have him in my life. He motivates me, whether he realizes it or not, to be the best person I can be each and every day; I love him very much.

Not Off to the Best Start

I've debated for a couple days whether to write about what's been going on with me the past couple days because I didn't want to freak people out (I know a lot of my family reads this), but I figured if I'm going to have a blog about how I live with CF, it has to be the good, the bad and the ugly.

Our new years was pretty uneventful, Tim and I just hung out that weekend and it was back to work on Monday for me. The kids were a little tired, but as the week went on they got a little crazier. Luckily it warmed up to be about 50 degrees (in JANUARY, in northern Illinois = not normal, but welcomed!) on Thursday and Friday so the kids got lots of outside time! Thursday morning I was at work, the kids had just arrived, and my breathing started feeling funny - I felt kind of crackly, but really thin crackles: aka: not going to be mucus when I coughed, it was going to be blood. Now, I've coughed up blood (hemoptysis) before, where it's been mixed in with my mucus (streaking), but only maybe once or twice ever in my life has it been straight blood. This time, it was straight blood and it wasn't staying down. I was trying my hardest not to cough as I'm helping my two little guys write in their journals. Since there were several adults in the room, I excused myself to the staff bathroom and got out what I could. It was pretty scary for me because I've never had this happen like this, let alone at work.

I didn't want to tell anyone at work because I think that would totally freak them out. Luckily, about 30 minutes later and several productive coughs, it subsided, and it just turned into streaking. I knew I had to contact my doctor to let her know what happened because that is not typical CF for me. At work, my lunch is at 10:30 (so about an hour and a half after all of this happened), so I emailed my doctor from my phone (YAY for having a smartphone!). I stayed at work, kept my phone on me and emailed my nurse back and forth a couple times during the day to hash out a plan.

My nurse, Penny, told me to back off of my treatments to once a day for two days (to give my lungs a break), then bump it up to twice a day for two days, then 3-4 times a day if I can (to get it all out). I also started an oral antibiotic, Cipro, for 14 days. So Thursday and Friday I just completed one AM treatment, and as I'm writing this, I'm completing my first treatment of the day today. I usually do my HTS (hypertonic saline - nebulizer med - salt water, pretty much) with my AM treatment, but I opted to do my Pulmozyme yesterday morning as to not irritate my lungs even more. I just finished my first treatment of the day today including HTS, and it went okay. There's still a tiny bit of blood in my mucus, but I think it's starting to get better.

The thing that gets me, is that I've been feeling great lately, and this literally came out of no where! I was sitting at a table, helping my students when I just started randomly coughing up blood - kind of scary. Today, I'm feeling just fine, I don't have any increased cough (not more than usual) or any 'sick' symptoms, so I feel weird having to go on antibiotics and mess around with my treatments, but I know it was definitely a smart move to contact my nurse. I also decided to back off of my exercise for this week, to give my lungs a break, but I'm hoping to pick it up again next week. In the meantime, I need to figure out how I'm going to try to fit in an extra treatment or two starting on Monday. I work til 5:30, so my second treatment isn't going to get done until 6:00, so I guess I'll have to do another one right before I go to bed.

Tim's been giving me crap that I have to start my 100% count all over again because I only did one treatment a day for two days! Haha, yeah right! I'm going to keep it up there because I told him I was just following doctor's orders! :-)

I hoping that within the next week, this will all go away and maybe I'll be feeling even better than I do now with that round of Cipro. I hope I didn't scare anyone - really, I'm fine. :-)

Donate Life

*Note: This post only expresses the views of the author - you may have a different opinion and the author is no way trying to tell you you're wrong - everyone is entitled to their own opinion.*

This is not a topic that I thought I'd be writing about on here, at least not yet, but I was on CysticLife this morning and someone posted how they recently registered to be an organ donor. It made me stop and think about if I checked that little box when I renewed my drivers license? I don't think I did.

http://www.donatelifeillinois.org/

Personally, I think organ donation is a wonderful gift - it's the gift of life! I mean, what are you going to do with your organs and tissues after you die, really?! Why don't you give them to someone who can use them??

In high school, I met someone named Joe who had Cystic Fibrosis. He wasn't always the healthiest, but he was one of the funniest, most positive people I have ever met. When I told my mom about him, she kind of looked at me funny, asked me what his last name was, and when I told her, she knew who he was! Apparently our parents had met when we were both little kids at some CF conference thing, but they didn't keep in touch. When I was in 8th grade my family moved to a new town, and Joe and I ended up going to the same high school. Crazy! Anyway, we became friends, even though we knew we weren't really supposed to be within three feet of each other (CF rule so that we don't spread each others germs/bacteria), we ignored it. He was in and out of the hospital a lot throughout high school and when we graduated, he didn't go off to college because of his health.

Summer 2005 - we were 17 here

We kept in touch when I went to college and in September of 2007, Joe had a double lung transplant. By the time he got his new lungs, one of his lungs was 75% unusable, the other was 50%, and he was on 8 liters of oxygen a day. This double lung transplant came at the perfect time in his life and gave him the chance to live again! Once he recovered, he was like a new person and he was able to walk his dog, Sophie, again (he loved that dog!)! The next fall, Joe went to college in Chicago for video game design. Unfortunately, him and I didn't keep in contact as much as I would have liked. In May of 2010, Joe developed some sort of cancer from his transplant, his body rejected his new lungs, and Joe passed away.

It came as a huge shock to me because I thought he had been doing so well and I didn't talk to him as much as we used to because we were both so busy. He was the first person I personally knew with CF (besides my distant cousins who I hardly ever saw) and it hit me really hard when he was gone. I couldn't believe that someone I went to high school with wasn't alive anymore, he was just too young. But because of his double lung transplant, he was able to get another two and a half years with his family and friends, and be able to go to college and live a wonderful life. If he wasn't given that second chance, he could have died right after graduating high school.

I'll admit, I didn't sign up to be an organ donor right then, because honestly I thought my organs couldn't be used because of my CF, but it's made me much more aware of organ donation. Obviously, they're not going to use my lungs, but that's not all people need. They use 'liver, heart, lungs, kidneys, pancreas, small intestines, corneas, bones, saphenous and femoral veins, heart valves and skin'. (http://www.donatelifeillinois.org/donatelife/faq.htm).

I know that this is a personal choice/opinion, but really, what are you going to do with you intestines or heart valves when you die?? You could give someone else the chance to live for another two and a half years, or many more years with their families, kids, spouses, friends, etc. by checking that little box when you renew your license, or registering through your state. Who knows, one day I could be in Joe's shoes where my lungs are barely functioning and I'm just waiting for the right set of lungs to come around to extend my life. I understand that it takes a person to die to donate their organs, and that's not always pleasant to think about, but I feel like it's such an amazing last gift to give someone so that they can live. I am proud to say that I am now officially an organ donor and that I really hope I can impact someone's life when that days comes when my life is over.


Are you an organ donor??

"Congratulations on your decision to help save lives!" - from the Donate Life website after I registered today! :-)

A Day in the Life of Me

When I first started my blog in January I posted a blog called Day to Day where I talked about what it's like day to day having CF. I recently read a blog where a cyster broke down her daily schedule to show how much she does treatments. I really liked this idea, so I decided to dedicate this post to the same thing. This is what a typical (Monday-Friday) day looks like to me.

• 6:00am - Wake up (If I'm on my Tobi that month -which is another antibiotic neb- then I get up at 5:45am to each day to fit it into my routine.)
• 6:05 - 6:50 - Morning Treatments: 

                                      - 30 minutes of Vest (3-ten minute sessions)
                                      - Albuterol nebulizer (~7-8 minutes)
                                      - Hypertonic Saline neb (~10 minutes) -- Both nebs are done during the Vest time
                                      - Clean Albuterol and HTS nebs
                                      - TOBI - if 'on' that month (different neb cup & machine - Add 10 min to routine)
                                      - 1 puff of Advair
                                      - Clean TOBI neb

This is what I look like when I do my treatments. Nebs and
Vest going at the same time.

• 6:50 - Make lunch for the day
• 6:55 - Get dressed
• 7:10 - Take allergy medicine, Zithromycin (MWF anti-biotic), Zyrtec, and 4 enzymes then eat breakfast - which usually is a big bowl of cereal or oatmeal with a glass of milk. 
• 7:20 - Take the rest of my vitamins (~4-6) I can't take my vitamins before I eat otherwise I'll get nauseous

This is approximately how many pills I take each day. The left
hand has all of my vitamins, anti-biotics, allergy med, and Zyrtec.
My right hand has about the amount of digestive enzymes I take in one day.

• 7:25 - Brush teeth & hair, make sure I took all of my meds and did my Advair puff
• 7:30/7:35 - Leave for work - need to be there by 7:45
• 7:45-3:30 - WORK! (Mondays and Thursdays I stay later at work, so it pushes my evening stuff back)
• 4:00 - Come home, change clothes, wash hands, empty out lunch box, get PM nebs prepared
• 4:10 - 5:00 - PM treatments:

                                      - 30 minutes of Vest (3-ten minute sessions)
                                      - Albuterol neb (~7-8 minutes)
                                      - Pulmozyme neb (~7-8 minutes) -- Both nebs are done during the Vest time
                                      - Clean Albuterol and Pulmozyme nebs
                                      - TOBI - if 'on' that month (different neb cup & machine - Add 10 min to routine)
                                      - 1 puff of Advair
                                      - Clean TOBI neb

A = Albuterol, P = Pulmozyme

• 5:00 - 5:45 on Tuesdays and Thursdays: Go to the Gym for at least 30 minutes of exercise. 
• 5:45 - EAT (but not without taking my enzymes first!) I eat lunch at 10:30am at work, so by the time I'm done with all of my treatments after work, I'm starving. On days that I go to the gym, I usually eat a granola bar before I go to give myself a little energy boost.
• Shower - I usually take my showers after dinner (or when I get back from the gym) because I don't want to wake up any earlier in the morning, especially on TOBI months - 5:45 is early enough!

I really have found that if I do my second round of treatments right when I get home from work, I rarely skip them. It also motivates me to get them out of the way at that time, so I can spend the rest of the night hanging out with Tim.
Speaking of Tim, I've been strongly hinting towards him to write a post on his own, of what it's like to live with a wife with CF, or anything really that he can think of. If you'd be interested in reading a post (or two, or three, or however many I can convince him to) written from his perspective, please vote on the top right-hand side of my blog. Maybe if he sees that other people want/care to read it, then he'll do it. If you also have something you'd be interested in reading from his perspective, please feel free to leave a comment on this post and I'll make sure to relay the message to him. Thanks!
It's 5:00 and it's Tuesday = Time to go to the gym! This is my fourth week going and I've been going twice each week, yay!

KALYDECO!!!!!

From the Cystic Fibrosis Foundation website: 

Vertex Submits Application to FDA for Approval of VX-770 – First Potential Drug to Target Underlying Cause of Cystic Fibrosis

October 19, 2011

Vertex Pharmaceuticals, Inc., announced today it has submitted an application to the U.S. Food and Drug Administration for a potential new CF therapy, VX-770 — under its new proposed trade name, KALYDECO™.

If approved, it will be the first drug on the market that targets the underlying cause of cystic fibrosis. Therapies available to people with CF to date only treat symptoms of the disease.

The company is seeking approval for the drug in people with cystic fibrosis age 6 and older who carry at least one copy of the G551D mutation of cystic fibrosis. (THAT'S ME!!!)

KALYDECO (kuh-LYE-deh-koh) was discovered in a collaboration between Vertex and the Cystic Fibrosis Foundation, which provided substantial scientific, financial and clinical support throughout the development process.

“The CF Foundation is thrilled that KALYDECO is on track for possible FDA approval in 2012,” said Robert J. Beall, Ph.D., President and CEO of the CF Foundation. “This is a significant step forward in our collaboration with Vertex and is further validation of the CF Foundation’s drug development strategy. We remain committed to accelerating the development of similar targeted medicines that will benefit all people with cystic fibrosis.”

Vertex has asked the FDA for priority review of the potential drug, which, if granted, could shorten the review from 10 to 6 months. The FDA grants priority review status for several reasons, including in situations where a potential drug is considered a major treatment advance. (YAY!!!!!)

Results released earlier this year from Phase 3 clinical trials of KALYDECO in people with the G551D mutation of CF showed that those receiving the drug had remarkable and sustained improvements in lung function and other key symptoms of the disease, compared with those on placebo. (YAY AGAIN!!!)

As FDA review of the potential drug gets underway, Vertex has set up a program to provide KALYDECO to people age 6 and older with the G551D mutation who are in critical medical need and could benefit from the treatment prior to potential approval. (Not me, but great idea for those who could benefit!)

The expanded access program is designed for people with CF who have highly limited lung function and meet other criteria. (Information about the program is available at CF Foundation-accredited care centers.)

KALYDECO is currently being evaluated in combination with another oral drug in development, VX-809, in people with the most common mutation of CF, Delta F508. 

Vertex plans to begin the second part of the Phase 2 KALYDECO and VX-809 clinical trial this month and will evaluate the two drugs over a longer period of time.

Frequently asked questions about Kalydeco (this one was my favorite):

What were the results of the VX-770 Phase 3 clinical trial in adults?

The Phase 3 clinical trial tested VX-770 in patients age 12 and older who carry at least one copy of the G551D mutation of the CF gene. Patients who received VX-770, compared to those on placebo, showed a marked improvement in lung function (FEV₁).

Those who received the drug gained 10.6 percentage points more on a lung function test after 24 weeks than those getting a placebo, a difference that is statistically highly significant. Patients continued to take either drug or placebo for another 24 weeks and the improvement was sustained. Lung function, the primary endpoint of the trial, was measured by how much a person could exhale in one second, a standard test.

In addition, patients receiving VX-770 gained nearly seven pounds, on average, over the course of the trial. People with CF have a hard time gaining and maintaining weight because the buildup of mucus in the pancreas limits the body’s ability to absorb essential nutrients and vitamins.

Patients also showed improvement in other secondary endpoints of the study, including reduced likelihood of pulmonary exacerbation and decreased respiratory symptoms.

In addition, average sweat chloride dropped toward normal levels in patients on VX-770, compared to those on placebo. Excessive sweat chloride is a key clinical indicator of the disease.

The overall findings are profound because they demonstrate that a chemical compound can improve multiple clinical measures of CF by targeting the basic defect. CF therapies currently on the market address the symptoms of the disease, not the underlying cause.

This is such amazing news for me and everyone in the CF world!! Especially for me and the other 4% of the the CF population with the G551D mutation!!! The results of the clinical trail were outstanding!!! The progress of this drug gives me so much hope for the future. Yes, it may take another year or two before it is available for CF patients, but hey, I've been waiting 23 years for something like this, so what's another two?! I am very excited to share this news with my readers, friends and family. I am also thankful for your love and support over the years. Because of your donations, drugs like this are making significant progress and significant changes in peoples' lives. THANK YOU to anyone/everyone who has donated to the Cystic Fibrosis Foundation because you are making it possible for me to live a wonderful, happy, and healthy life.

I believe that one day this drug will help me achieve my ultimate goal: 

To LIVE, LAUGH, LOVE and BREATHE for a long time!!!!

Busy

A lot has been going on in the past couple of weeks. We finally got our sublease taken care of! It was a lot of back and forth between the person who was taking it over, but it got finalized this morning. Even though they were 40 minutes late (huge pet peeve of mine!), everything was signed and the keys were handed over! We now only have one HEALTHY place to live and one rent payment to worry about. :-)
We've also been doing a lot of work around the house lately, trying to get settled in. We did a little bit of yard work, but mostly worked inside. Shelves have gone up, more boxes have been unpacked and as of yesterday, we started painting. Our landlord said that we can pretty much do whatever we want in the house (as long as we don't paint the walls black), so we are pretty lucky. We painted the living room yesterday and are planning on painting the bedroom and office/dining room soon. It was a lot more work than I thought it was going to be yesterday, but the living room looks great; we both really like it!

In other news, I have my first job interview this coming Friday. I am very excited, but also very nervous because I've never interviewed before and this could be the only interview I get for a job for the fall. The school that I am interviewing at is about two hours away from where we are living, so that definitely has increased discussion between Tim and I. We finally found a place to live that we both really like, that we're settling into, and then I get an interview two hours away. I applied in that area because a lot of Tim's family lives near there and I thought I would just widen my search for a job - not thinking I'd actually get an interview! But just because I have an interview, doesn't mean that I am going to be offered the job. I don't know how many people they are interviewing, or if this is even just a screening process, so we'll see. I'll hopefully know more next weekend after my interview. Wish me luck!
Health-wise, I haven't been feeling the greatest lately. The week after the Great Strides walk, the temperature dropped and the following weekend it was snowing! I don't really know if weather changes can have an affect on my health, but it definitely seems like it. It started off as a stuffy nose and some congestion, and I thought maybe just my allergies were acting up because of the crazy weather, but over the past few days it's turned into a nasty cough producing really thick mucus, thicker than usual (the joys of CF) that is very hard to get out. I just started an antibiotic yesterday so hopefully that will help soon. I've also been getting a lot of it out with the help of my treatments. The job of one of my nebulizers is to loosen the mucus and the other is to make it a little thinner so it's easier to get out. I have a doctors appointment scheduled for Thursday, so I will be able to see how much my lungs have been affected by all of this. Hopefully my lung function hasn't gone down too much so that I can work to get it back after this bug is gone.
I think that's about all that's going on with us lately. It's been a busy couple of weeks and there's a lot going on in the upcoming weeks as well. I'll be keeping you updated as things come about. :)

'Tis the Season...

...to start applying for teaching jobs for the 2011-2012 school year, yuck. As everyone knows, thanks to the wonderful economy, there are very few teaching positions open each school year. Applying for jobs is like a job in itself. There are several hundred, maybe even a thousand applicants for each position, so it's a pretty tough time right now. And among those hundreds of applicants, I have to make myself stand out when we all pretty much have the same qualifications. As much as I say that I want to apply "everywhere" there are several factors that I have to keep in mind.

1) Tim and his job. Right now Tim's working about 5 minutes from where we live and also taking a class at the local community college. It's not too easy for us to just pick up and move anywhere right now. Also, our apartment lease isn't up until August 1st, so we won't be able to move until the end of summer. So, if I were to get a job later in the summer that's far away, that limits the amount of time we have to find a place to live.

2) Commute. Gas prices are sky-rocketing lately, and I really don't want to have a huge commute to and from work. I love living close to where I work, it makes everything so much easier.

3) Distance from family. If that one day finally comes where a little Veitengruber enters our life, I would love to live close to family to have their help and support--especially because Tim and I are going to need to keep working.

4) Staying in Illinois? Last year when I was looking for a job, Tim suggested that I look outside of Illinois, but I really don't think I could do that. Going along with 'distance from family', I don't want to be too far from my friends and my comfort either. I'm not a huge fan of moving out of my comfort zone, but Illinois is not doing the best financially...but, then again, I don't know many states that are. Another thing is if I wanted to teach out of state, I am certified in Illinois, so it would cost money to take a test, or possibly more classes, to be qualified in a different state.

5) Connections. Right now, I feel like the only way I can get a job right now is through my connections in the school districts because there are so many applicants for one position. And as of right now, I really only have connections in one district. I would love to keep working in that district, but it doesn't look too promising for next year (teaching-wise, there's a possibility for assistant, maybe). It would also be nice to get into another district to build up those connections, so I'll just have to wait and see what happens.

6) A place to live. This one kind of goes along with all of the above. I feel like if I were to get a teaching job for the fall, I wouldn't find out until late in the summer, if not a couple weeks before the school year starts. This makes things pretty difficult for Tim and I right now because we're trying to look for a new place to live, but if I don't know where I'm going to be working, it's tough to settle on a place--especially if I get a job over an hour away from where we are currently living.

7) Staying an assistant? There's probably a greater possibility of me getting another assistant job for the next school year than a teaching job, but I'd much rather have my own classroom. I do love the current position I am in; I work with great staff and great students, but sometimes it's hard just being the assistant and not the teacher. Another problem is the pay. Being an assistant is full-time, but I am getting paid about half as much as I would if I was a teacher. It kills me because I'm certified and I'm not using that degree to it's fullest, and I could be making so much more. Getting that teaching job would help us save that extra money to hopefully by a house in the near future. Being an assistant this year though has given me an extra year of experience with so many different staff members and situations to help me become a better teacher, so an extra year of that experience would be good for me, but I don't want to get stuck as an assistant year after year.

So, that's my/our current situation right now. There are just so many important decisions, it's tough. I'm really determined to get a teaching job next year, so I hope that my efforts are enough. I'll keep you updated on the hunt. Wish me luck! :-)

I really dislike the unknown!

One Step Closer...!!!

Great news for CFers, and all of those who have donated to CFF, today!!! 

A new drug, VX-770, that is in Phase 3 of clinical trials is showing amazing results!! (More information in this New York Times article, too!) This drug directly works with the defective protein in patients with the G551D mutation, which only is about 4% of CF cases....BUT they're on the right track! Right behind this drug in clinical trials is another one called VX-809 which is going to be working with the most common mutation in CF patients (Delta F-508).

Each CF patient has 2 mutations of their CFTR gene (one from mom, one from dad) and doctors can perform tests to identify those mutations. I have one Delta F-508 mutation, and the other is unknown. So, the current VX-770 won't work for me, but it will help about 2,800 people world-wide! The next one coming up through drug trials, VX-809, might work for me to keep me living, laughing and loving!

This is what happens when all of YOU wonderful people make  

donations to the Cystic Fibrosis Foundation!!!! 

Smoking...

1) WHY?!?!?!

2) Okay, okay, maybe your parents smoked and now you do, too.
3) God gave you a good set of normal lungs, why are you ruining them when I was given crappy lungs?
4) Please stand 10-20 feet away from entrances to buildings (whatever the regulation is). Fine, you have to smoke, but it shouldn't have to affect me.

I know, this probably sounds harsh, but they're my initial thoughts when I think about people who smoke cigarettes. It bothers me. I'm not a super religious person, but my #3 thought is something I think about often when I see people smoking a lot. Recently we've been smelling cigarette smoke coming in through our vents, thinking it was coming from someone smoking in our building. We couldn't figure out where it was coming from exactly, but I found out the other day. Our downstairs neighbor doesn't live in her apartment full time--she comes and goes. Well the other day, about 5 minutes after she came home, I could smell it. I knew it was from her. It was constant all night, never letting up, and when Tim came home from work he said it smelled so bad like it was coming from our place.
This really bothers me. I feel that I should be able to live in my own apartment without being affected by someone else's nasty habit. I don't know what to do to be comfortable in my own apartment! Tim worked for our property management company last year, so he knows they allow smoking in the buildings because they just charge the tenants more for damage when they move out. I don't want to go down and ask her to stop because she's older and not very friendly....plus its winter, so I understand she doesn't want to go outside to smoke. Again, with it being winter, our heat is on a lot, which means it blows up in our apartment every time it kicks on.
If anyone has suggestions of what I can do, I'd appreciate it; it's very unhealthy for me to be breathing in this smoke. Also, if you live in my area and know of an apartment complex that doesn't allow smoking, I'm up for suggestions, too--our lease is up in the summer, so we're looking to move anyway. (Thanks)

I don't mean for this post to sound so negative, and I'm sorry if you're reading this, you smoke and I'm offending you, but it's a huge pet peeve of mine. I just want to be comfortable in my own apartment and to live in a healthy environment!

Day to Day

This post mostly has to do with the way I live with CF from day to day, and how it may be challenging at some points, it's "normal" for me. 

When I was in college, finding the time/motivation to do my treatments twice a day was difficult, but I really tried my best. Depending on when I had class, how much homework I had, or when I wanted to hang out with my friends and boyfriend, I had to try to fit two 30-40 minute breathing treatments in everyday. Tim was very supportive and was always on me about doing my treatments, which was helpful. I had a few different roommates through my 4 years at NIU, and they all understood what I had to do and that was very comforting. When I graduated college(!!!), Tim and I moved in together and that was great because again, he always reminded me that I needed to keep myself healthy. 

To me, having a daily routine is very helpful. I currently work as a full time teaching assistant in DeKalb School District, so my Monday-Friday routine is the same. I get up either at 5:45 or 6:00am, depending on how many nebulizers I'm on that month, and do my treatments first thing in the morning. (I usually shower the night before, just so I don't have to wake up any earlier!). Then I get dressed, pack my lunch and eat my breakfast. I have to be at work by 8am and while I'm there I work with Kindergarteners, who are really disgusting germ-wise, haha, but are SO fun to work with! They really do pick their noses as much as people say they do! I must wash my hands and get hand sanitizer 4-5 times a day, just to keep myself healthy. Then, when the school day is done, I go home and do my second round of treatments right away. I've learned that for me, this is the best time to do it, that way I can have the rest of the night to do whatever I want. If I don't do them right when I get home, chances are, they won't get done. On weekends, my schedule isn't so routine, so doing my treatments first thing when I get up is a must; it's the second round that is harder to get in, depending on what we're doing. Last night, for example, we hung out with one of our friends for a while, and didn't get home til after 11 and I was exhausted, so I went to bed as soon as I got home. I always feel bad when I do stuff like that, but luckily it doesn't happen too often. 

Currently, my motivation for doing my treatments is becoming a mother. Ever since I was little, I've always wanted to have kids. Tim and I know that we want to have kids, but I know that I need to be in the best shape as possible to carry a child, and to be healthy after the birth. Everyone's lung function goes down a little bit while they're pregnant because the baby is compressing their lungs, especially towards the end. But for me, that lung function that I lose during the pregnancy, I may not get back. With CF, it's very easy for your lung function to go down, but to get it back, you have to work VERY hard. Every time I don't feel like doing my treatments, I just think of being pregnant, and carrying my own child, and I know that I need to get my lungs in tip top shape! My goal is to be in the 90s when I get pregnant--currently, I'm in the high 80s. Tim's sister and her husband recently had their first baby in June, our nephew Cole, and that's when I realized that's exactly what I want. I have been kicking my own butt to make myself as healthy as possible for when that time should finally come! 

My First Post!

My name is Colleen, I'm 22 years old and I have Cystic Fibrosis (CF). I was diagnosed with CF at birth and have accepted it as a part of my life. Luckily, I've been very healthy and have not been hospitalized since I was born. Keeping a positive attitude and keeping up with all of my treatments is going to keep up that record, hopefully for years to come!

I love the saying, 'live, laugh, love' and will base my blog off it when I can.

Live: "You were given this life because you are strong enough to live it." One thing you'll learn about me, is I really like quotes. I think this quote is absolutely true. This is the life I was given, and I'm going to live it to the fullest of my ability, because I can! The average life expectancy for a person with CF is late 30s, maybe into the 40s. I am determined to beat that statistic; to live!

Laugh: I laugh at everything! Laughter is the best medicine...it makes me cough! Having a sense of humor is important to me and laughing everyday is a necessity. Joking and laughing with friends and family is the best!

Love: I have lots of love in my life, especially from close friends. I recently got married in October 2010, to my super supportive husband, Tim, and became a part of an extremely loving and supportive family of in-laws! Without happy, supportive, encouraging people surrounding me in my everyday life, living with CF would certainly be a struggle.