Friday, May 31, 2013

CF Awareness Month Blog #31 - THANK YOU!

Thank you for reading all 31 posts (or the ones you did read!) this month on my mission to help raise awareness of Cystic Fibrosis.

Thank you for your kind words of encouragement from commenting on some of my posts. I love to know that my readers are enjoying what they're reading.

Thank you to anyone and everyone who's ever donated to the Cystic Fibrosis Foundation!! Every dollar makes a difference and you're helping to keep me healthy! For that, I cannot thank you enough.

Thank you to everyone who has participated in a Great Strides event! Along with raising money for research, they are wonderful for getting people involved and gaining public awareness for CF.

Thank you to those who have shared my blog with others to help spread awareness of my personal story with Cystic Fibrosis. I hope to be reaching CFers and parents of CFers, and I want them to know that it is possible to live happily & fully with CF.

Thursday, May 30, 2013

CF Awareness Month Blog #30 - Raising Awareness

At the bottom it says:

  • I hope to be spreading awareness by sharing my story with you through this blog, and I hope that you'll share it with the people you know. It's been fun to share some more about my CF story through this month's blog posts.
  • I'll be able to share something with you in July that should help spread more awareness... :-)
  • I've created a Facebook page for my Great Strides team (Colleen's Friends & Family) where I update year-round. 
  • Participating in Great Strides is a wonderful way to raise money and awareness of Cystic Fibrosis for anyone!
  • Even just wearing my Great Strides, Out Run CF and/or Rock CF shirts out in public and to my 5Ks help raise awareness...especially when they're as cool as my new Rock CF shirt (get yours here!) ----->
  • How do you help raise awareness of CF??

Wednesday, May 29, 2013

Kinder Quotes

In honor of today being my last day of school, I thought I'd finally share my last compilation of Kinder Quotes from my first class! Enjoy!
It's the end of the day and we're packing up to go home. It's pretty noisy/chaotic in the room because kids, folders and backpacks are everywhere, when I think I hear a student say, ""Bob" lost his pet. It was in his backpack"
I said, "Excuse me?"
Bob says, "Yeah, it was a cockroach from my grandma's house."
Me: (while trying not to panic) "Where is it??"
Bob: "I don't know." So Bob wanders around the room with his carrying his open backpack looking on the floor for this apparent cockroach.
Finally Bob yells, "I found it!"
Me: "Is it dead or alive???"
Bob: "Alive."
Me: "Step on it!!!"
Well of course Bob crushed the crap out of it....sorry to the night custodian. Gross!!!!!!!!!!!
Trying to have a serious conversation with my class today about their behavior with a sub:
Me: "Remember last time I was gone and you were so loud."
Student A: "Yeah and Mr. (Principal) had to come down because he could hear us all the way from the office!"
Me: "Yeah...that's not good. I'm so sad that had to happen."
Student B (so innocently says): "Mr. (Principal) has big ears."
And that's when the serious conversation stopped - I could not stop laughing!! Then I had to assure the students that the principal didn't hear them all the way down the hall because he has big ears - it was because they were so loud!
I introduced the "ee" and "or" Jolly Phonics sounds to my kids. After reading the word 'cork' together, I told them to change the k to an n and they said, "Corn."
I was encouraging them to come up with their own words with those sounds in them and then one student excitedly shouted, "Porn!"
I calmly said, "No, that's not a word." And quickly called on another student before someone else tried to tell me otherwise! :-)
One of the first students who came into my room (first day back after spring break) popped his head out from around the mailboxes and said, "Ain't nobody got time for that!!" Then just went about his business!
We were talking about what we were going to get our moms for Mother's Day.
Student A: "Chocolate."
Student B: "A flower and candy."
Student C: "I think I'm going to get a bunny."
Me: "No, this isn't (student name) Day, it's Mothers Day!"
Someone needs to teach that child it is NOT all about her 24/7!!!!
I cannot wait to have a new class of little jokesters!! I'll have to be better about writing these things down next year because kindergarteners are just hilarious!!! :-) Yay, summer break!!!

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!

Tuesday, May 28, 2013

CF Awareness Month Blog #28 - What NOT To Say

  • "Have another cigarette!" or anything else linking our cough to me, I know we'd all give anything to not have the smokers cough.
  • "Must be nice to have to gain weight." (see comment below)
  • "Must be nice to be able to eat whatever you want." I've blogged about this before, but it's not about eating whatever you want. Yes I need to consume a large amount of calories, but if I put crap into my body, then I'm going to feel like crap, and I am going to crap! haha
  • "You're so skinny!" or "I wish I was as skinny as you." These bother me only because people don't realize my life-long struggle to not be so darn skinny and malnurished. 
  • "The Vest looks fun." Try being hooked up to it for at least an hour a day, and while you're shaking, you're coughing your brains out....SO fun!
  • Anything that has to do with our bathroom habits!!! WE CAN'T HELP IT!
That's about all that I can think of. I hope some fellow CFers will add a few! And it's one thing to say these to me without knowledge of my CF, but it's most annoying when it comes out of the mouths of people who know what I'm going through and just don't think before they make a comment.

Monday, May 27, 2013

CF Awareness Month Blog #27 - Inspirations

See my blog below, there's a huge inspiration for me! I am really inspired by fellow CFers who are totally kicking CF booty! They motivate me to better myself and my health each and everyday. Also CFers who have lost their life fighting this disease. They make me want to prove that I can still live a full life despite having CF. I'm also inspired by CF moms - because not only are they taking care of themselves & their CF, but they're also proving that they can carry and raise a child(ren) at the same time! To me, that's pretty inspiring! I hope that one day I can be an awesome CF mom, too. :-)

Sunday, May 26, 2013

CF Awareness Month Blog #26 - In Memorium

So far in my life, I've only personally known one CF patient who's died, my friend Joe, and it was very difficult for me. And I say 'so far' because I know that as I connect with more cysters and fibros in the online CF community, eventually (hopefully years and years down the road) I'm going to start losing more friends. It may not necessarily be to CF, but it's still tough when you have that connection with them. You know exactly how they were feeling and what they had to deal with day to day.
Summer 2005 - 17 years old
When I walk in Great Strides, or when I'm running around my neighborhood, or feeling particularly negative about wanting to do my treatments, I think about my friend Joe. I'm doing this, whether it's running, raising awareness, or doing my treatments, because I can. I think about all of the things that Joe wanted to do with his life and how, unfortunately, he's not around to do them anymore. I think about how he would want me to be happy and healthy, and to do the things I love. I do it for him. I do it for those who have lost their life from CF. To show them that I'm not going to give up because I know they didn't give up when they were fighting, too. I am doing everything in my power to make those who are no longer with us because of CF, proud. And their families proud. I do it to prove to myself that I can beat CF each day. I will not let CF run my life.

Saturday, May 25, 2013

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.

CF Awareness Month Blog #24 - Videos

Cindy's Kalydeco video: This is a short news clip of one of my cysters, Cindy, who has been on Kalydeco for almost a year now. Shortly after she started it, she found out she was pregnant. Now her daughter, Kate, is two months old and doing very well. This video explains how taking Kalydeco has positively changed Cindy's life & her outlook on her future. :-)

Great Strides video: This is the video from the Great Strides website.

And finally, the video below is the longer version of the Dick's Sporting Goods "Every Runner Has A Reason" commercial series. This one features a 29 year old man with cystic fibrosis. Enjoy :-)

Thursday, May 23, 2013

CF Awareness Month Blog #23 - Photos

I have a ton of CF related pictures that I could share. I have a lot from Great Strides, several of me doing my treatments and some other CF awareness pictures. I won't bombard you, but I'll share a few of my favorites:
My largest Great Strides Team to date!! Over 50 friends & family, and there are a few missing from the picture. :-)
I saw this one floating around Facebook and thought it was cute.
Interesting fact (also found this on Facebook)
All of my medications & equipment minus the Vest and some nebulizer viles
Fall 2006 - talking to Tim online while doing my Vest
This is a newer thing for me, but I've really been trying to keep myself healthy
when I go to the hospital for doctor appointments.

Wednesday, May 22, 2013

CF Awareness Month Blog #22 - CF Facts

One of my cyster blogger friends, Illness Inspired Words, has been sharing a few "fun facts" this month in honor of it being CF awareness month, so I'm going to point you in the direction of her blog for today. Enjoy! :-)

Fun Fact #1: CF is not a lung disease!
Fun Fact #2: CF is an "orphan disease"
Fun Fact #3: CF is an extremely expensive disease 
Fun Fact #4: CF is mostly an "invisible disease"

Tuesday, May 21, 2013

CF Awareness Month Blog #20 & 21

Sorry I'm running a little behind - we've been very busy lately. Saturday was Tim's 27th birthday and we celebrated by going to a St. Louis Cardinals game with his sister and her husband on Saturday evening. Unfortunately, the Cards lost in extra innings, but we had great seats and a fun time together. Sunday we spent the morning hanging out with our nephew, Isaac before heading home and grocery shopping (a thing we both hate doing!). I love that we now only live about two hours from Tim's sister because it makes it much easier to hang out for a weekend. :)

Really?! I hope after reading my blog, you have some information about what Cystic Fibrosis really is! I know that each case is a little different patient to patient, but I hope you've been able to learn the ins and outs of my case through my posts. For more information you can visit,,, or to learn more about my CF click on the words "Cystic Fibrosis" under the what I write about  area on the right side of this page. 

Sunday, May 19, 2013

CF Awareness Month Blog #18 & 19

I would definitely say I'm a little crazy about having a routine/schedule. That helps me get my treatments done and usually not at crazy hours of the day. I also have one of those days of the week pill organizer things which really keeps me on track with taking all of my vitamins each day. It's much easier filling that thing once a week than getting one pill out of eight different bottles each morning.
As far as hygiene, I would not consider myself a germ-a-phobe....obviously, I am a kindergarten teacher! But really, I try not to be too weird about germs. I feel like I need to be exposed to things like 'normal' people to help build my immune system.
Probably the most annoying thing, and the thing I need to get better about is cleaning/sterilizing my neb cups. Right now I clean them in hot soapy water after each treatment. I'm supposed to boil them often to also help kill the germs, but that is so annoying. I'm very anal about keeping the mouth pieces and cups together (I label each neb cup so I'm not using the same cup for different meds), so I don't like to throw all of the pieces from all three cups into boiling water at the same time...maybe that's just something I need to get over. I've read that using a baby bottle sterilizer helps some CF patients, so I might look into that. We currently don't have a dishwasher (machine -- I'm the dishwasher), so that's not an option for me right now.

Haha, I love that the picture says, "OMG don't start me!" because that's exactly what I'm thinking. If you know me at all, you know how much I HATE when people smoke!!!!! After growing up with some family members who've smoked, having a good friend with CF whose parents smoked (UGH!), living in apartments with smoking neighbors, I am not afraid to tell the world how STUPID I think it is!!!!

But honestly, I think it comes with having CF and appreciating my body a little more than someone who doesn't have any health issues. I was born with crappy lungs and I work my butt off daily to keep them in tip-top shape because I want to lead a long, healthy life. Where (I feel) someone who's born without any health issues assumes they're going to lead a long, healthy life, so why not smoke a little bit. Again, I have no idea what's going on in their head, and honestly want to slap them sometimes for smoking - haha - but that's just my guess.

Saturday, May 18, 2013

CF Awareness Month Blog #17 - Tim

This one seems pretty fitting for today (even though I'm a day behind) since it is his birthday today! Happy birthday to my wonderful, supportive husband, Tim!!! I know it might sound silly referring to him as 'my savior' but I feel like I would not be where I am today if it wasn't for him!! I met Tim when I was a freshman in college and he was a junior and we've been together ever since (just over 6 1/2 years now). Long story short, he has accepted me for who I am, CF included, and I couldn't be more thankful to have him in my life. He has been my push and motivation to keep myself healthy. I want to be around for as long as I can for & with him. So happy 27th birthday to the man who keeps me alive!! I love you more than you know!!! :-)
"I'm hard to love, hard to love,
No I don't make it easy,
I couldn't do it if I stood where you stood,
I'm hard to love, hard to love,
And you say that you need me,
I don't deserve it but I love that you love me good."

Thursday, May 16, 2013

Positive Thoughts Thursday

First of all, I want to apologize for neglecting to post any positive thoughts over the last month. Tim and I have been through some stressful, crappy stuff over the past few weeks - which is when I should have probably been trying to really focus more on the positives - and I've been feeling pretty crabby lately. Thankfully, I feel like I'm coming around out of that slump a little at a time, and I felt it was necessary to get back into my positive thinking ways...
  • A few weeks ago I started taking a probiotic and man, do I feel great! I am less bloated and gassy in general and my bathroom trips have been less frequent. I'm also still trying to monitor my calorie intake and blood sugars to try and stay as regular as possible. I'm hoping the combination of all of these things will help me start gaining the weight back I need.
  • Although I have learned quickly that the end of the year is almost (if not more) stressful than the beginning of the year as a teacher, my class and I have had a lot of fun days in the past couple weeks. We went bowling (supposed to go to the zoo, but it was rainy and cold); we went to the YMCA where the kids were able to swim and play in the gym; and just yesterday we had Play Day where we travel from station to station outside all afternoon. There was a bounce house, inflatable slide, inflatable obstacle course, a water station, snow cones, tug of war, dodgeball, and sack/relay races. I am so happy that I'm healthy enough to run around with my kids and be able to participate in all of this fun stuff with them! :-)
  • Tim and I are house hunting! Since I have found a job that I love and Tim's now in a stable job, and we're closer to Tim's family, we're looking to buy a house! This is a huge goal of mine (to be a homeowner) and is one of the things that I wasn't sharing about a month ago when I mentioned I was working towards one of my goals. We are currently under contract on a house and are waiting to close (this has been the stress of my life for the past few weeks because it is NOT going according to plan, but I'm keeping this post positive!). I'm hoping soon that I'll be able to post that we're officially homeowners. 
  • Last Saturday was my second Great Strides of the season and it was so much fun. We had family on both sides show up to walk on the chilly, windy but sunny day. After the walk, Tim's sister Katrina,
    Tim and I played on the playground with our nephew, Isaac for a while -it was so fun!! I can't believe how big he's getting! See the adorable pictures below. :)
  • Kitten update: The kittens are 4 weeks old today! We were able to see them while we were in town for Great Strides last weekend. They are hilarious. Their eyes are open and they're learning to walk, but they stumble all over the place. They are also learning how to play together which is hysterical! I think we sat there for about 2 hours just watching them. 
  • Oh, how could I forget?? I'm an aunt to a third nephew!! Tim's other sister, Elise, had her second son, Liam, on Monday, May 6th! He's soooo cute and I cannot wait to go see him in June to celebrate his big brother's third birthday! :-)
  • I've started running again and boy did I miss it! A couple days ago I ran 2.4 of my 3.5 mile route! :) Tim and I signed up for a 5K in June (the same one I did for my first 5K last year) so I'm prepping for that. I'm so happy that my body hasn't lost a lot of the endurance I had in the fall since I took the winter off. 
3 1/2 week old kittens
This is our little guy - still haven't agreed on a name yet for him
My favorite picture from Great Strides! Aunt Colleen & Isaac! :)
Running around the park with Isaac
Tim and I just hanging out on the dinosaur!
He loved peeking through that thing
Haha...that slide was painful on our hips...I think we were a little too big!

CF Awareness Month Blogs #15 &16

These two kind of go together and there's not much that I can think of to say about either, so I'll try my best!

I know that when I was in high school and college I would skip treatments all the time because I was "too tired." Now that I'm working on 100% compliance (almost 2 years straight), I've done my treatments all crazy times of the night, especially when we're out of town. I know I've fallen asleep while doing treatments before. I've forgotten to take my enzymes before meals. Or, I'll take my enzymes, then half way through the meal I think, "Oh crap, did I take my enzymes??" So then I usually just take a couple more to be sure!

I remember one time when I was little, UPS or FedEx was on strike, so when my mom called to refill my enzymes they took longer than expected to arrive. I remember I didn't have my enzymes for about a day or two, so I remember just having to eat fruit & pretzels (easy things to digest) until they came. Looking back, there had to be someway to get them from a local pharmacy to cover that day, but oh well...

When I was in middle school, my family's insurance got chanced for some reason, so I had to go see a new CF doctor. I was not happy because I was in my rebellious stage and I was "going to see someone who knew nothing about me". At every CF doctor appointment, I have to give a sputum sample (mucus) to see what bacteria my lungs are culturing. When I was younger and not doing treatments, it was very difficult for me to cough up any mucus to give a good sample, so they would have to do a throat culture - where they stick a giant Q-tip thing down your throat to make you gag (lovely). Well this new doctor did a throat culture on me and scratch the back of my throat pretty hard with the thing and I remember being so angry at her!! Thankfully, I didn't have to see her too much and our insurance went back to normal so I could go back to my regular Peds doctor "who wouldn't hurt me" in my adolescent mind! ;)

Tuesday, May 14, 2013

CF Awareness Month Blog #14 - CF & Kids

Unfortunately, this blog doesn't really apply to me. I don't have any kids and my students don't know about my CF. I have always been curious how my family (aunts & uncles) have explained my CF to their children (my cousins). For those of you who have had to explain CF to a child, how have you done it?

Here's a cute, child-friendly video that explains the basics of CF to children.

Monday, May 13, 2013

CF Awareness Month Blog #13 - Medical Terminology

Another list of medical terms that probably means nothing to non-CFers, but things that I'm so used to that I don't think twice about some of them. My adult CF doctor is so wonderful about explaining to me the ins and outs of how my treatments work, why I'm on specific medications, and what exactly is going on with my body.

Bronchiectasis: A fancy way of saying scarred/inflamed airways - at least that's how my doctor explained it to me. This occurs from chronic lung infections, typical in CF patients.

Burkholderia Cepacia (B. Cepacia): A bacteria that can get into your lungs which is typically resistant to most antibiotics. I do know that any CF patient who carries this bacteria is asked not to attend any CF related events, such as Great Strides. Definitely something I don't ever want to get!

Tobramycin: Antibiotic used in patients with pseudomonas. I'm currently on TOBI which is a nebulized form every other month so that I don't become resistant to it. I remember when I first started it how much I hated the taste of it. Now it makes such a positive difference in my lungs when I'm on it, I don't even think about what it tastes like.

Hemoptysis: Coughing up blood or bloody mucus. This has happened to me and the first few times it was very scary. Thankfully I've learned to back off my treatments if it does happen, and that unfortunately, it's just something that happens every once in a while.

Hyperglycemia: High blood sugar levels. CF patients are at a higher risk for developing CF Related Diabetes due to scarring in the pancreas and its inability to produce insulin or regulate insulin. This is something that I'm currently considered 'borderline' for. I've been monitoring my blood sugars, keep exercising, and I've made some major adjustments to my diet to help control my sugars. Anything I can do to avoid insulin injections!

Sunday, May 12, 2013

CF Awareness Month Blog #12 - Cracking Point

**Happy 200th Post**

Having Cystic Fibrosis isn't easy to deal with everyday. There are times when I really want to skip my treatments. There are times where I think, "Why me?" There are times I get scared about the future. But thankfully, for me, those times are getting to be fewer and farther between.
As I've mentioned in previous blog posts this month, I really struggled with accepting my CF in middle school and high school. There were times when I would just cry in my room because I was so scared about what the future held for me, or because I was so frustrated that I had to work so hard to keep myself healthy each day. But I'm very happy to say that with the support of my friends, then meeting Tim in college, and the encouragement of my CF doctor, I was able to work through those tough emotions and see that I'm much happier thinking positively about my life. CF has kept me on my toes the past few years (as I think it always will), throwing some challenges my way lately, but I know that I can get through it. Keeping a positive attitude and taking things day by day definitely keep me from cracking!

Saturday, May 11, 2013

CF Awareness Month Blog #11 - P Words

Thankfully, I don't know what half of those "p-words" are, so I'll just inform you on the ones that I do. :)

Pseudomonas: "Moderate mucoid Pseudomonas aeruginosa" (to be exact) is what I culture in my lungs. I've had it for as long as I can remember, and it seems to be pretty common in Cystic Fibrosis patients. If you click on the link, there's a great explanation for how it's treated in CF.

Ports: Fortunately for me, I only know about ports from my exposure to the CF community and other CFers' stories. The best way for me to explain it is a permanent way to access your veins for IV medication. It's something that's placed under the skin that's connected to a large vein. Instead of having to get a new IV every time a patient needs antibiotics, this is placed to make access easier.

Physio: This is my chest physico-therapy, aka: the Vest or chest percussions. If I had the option, I'd choose manual chest percussions any day over my Vest. But I can't make Tim do that for me! Every once in a while, he'll give me a good beating, and its like an instant mucus mover. And it feels like a wonderful massage -- even though he frequently asks if it hurts, it never does - best feeling ever! He cups his hands and claps on my back/sides (where my lungs are) and I can usually instantly cough up something. I love manual chest PT because I can feel it working without nebulizers.
But like I said, I wouldn't ever make Tim do that for me for an hour a day....although, his arm muscles might get huge! ;) That's why I have the Vest. I set it to different frequencies/pressure to help shake and loosen the mucus from my lungs....with the help of Albuterol (to open my airways), Hypertonic Saline (to add salt & water to my airways to loosen things up) and Pulmozyme (to loosen my mucus) and antibiotic TOBI (to help to try kill the pseudomonas). This combination has been working for me, but every CF patient is different. Some have to do their treatments (Vest & nebs) 3-4 times a day, others are on IVs more frequently...everyone's different. And what works for one person, doesn't always work for another.

Pancreatic Enzymes: I went into depth about my enzymes in my Diet post the other day. Basically, my pancreas cannot produce natural enzymes to break down and absorb the food I eat. So every time before I eat, I have to take synthetic enzymes to help me with that process. If I don't, I get very bloated, have lots of stomach pains, and everything goes right through me. I've been on a few different types of enzymes throughout my life, trying to find the right one that works for me.

Friday, May 10, 2013

CF Awareness Month Blog #10 - Pros & Cons


  • I think the CF has really helped shape me into the person I am today, and I'm very proud of that person - I'm independent, strong, determined, a leader, optimistic & loving.
  • I've been welcomed with open arms into the great online CF community! It's a wonderful place to meet people who are struggling through similar things and it's also an excellent place to reach out and help others. Thanks to Blogger, CysticLife, CFLiving, Facebook, etc...
  • CF has forced me to be the healthiest version of myself. I want to take care of my body so it can last as long as possible. I feel that if I didn't have CF, I wouldn't understand how precious having a "healthy" body would be, and I don't think I'd take care of myself as well as I do now.
  • Kind of going with the above statement, I feel like I have a greater appreciation for life. Being faced with a life-threatening disease, it makes you appreciate each day that you have knowing that your health could decline really at any moment. Of course, I hate to think like that, I really try to stay positive, and that's really made me enjoy everyday even more! And that's my motivation to be the healthiest version of myself!
  • It's time consuming! Having CF takes up a lot of time in my life with daily treatments and lots of doctor appointments. Sometimes I wonder what I'd be doing with all my time if I didn't have to do treatments...Along the same lines, it's annoying to have to lug all of my treatments with me whenever we go out of town.
  • It's always something. I feel like there's always something that is 'wrong' whether it's low lung function, low weight, chest infection, diabetes scare....they never seem to all be 'good' at the same time.
  • CF is expensive.
  • It's emotionally tolling. It took me a long time to accept CF as a part of my life. It's always in the back of my mind that my health can decline, and that one day I might have to be in the hospital regularly with IVs, and that one day I might have to be listed for a lung transplant.

With all of this being said, to me it seems like the Pros far out-weigh the Cons here, for me. But I would still never wish that anyone would have to go through this. I can't say that I wish I never had CF because I don't know what kind of person I would have become without it and I am very proud of the person I am today. If I could get rid of CF today, I'd gladly do that because I'd still have the understanding and appreciation from living with CF for nearly 25 years...if that makes any sense.

Thursday, May 9, 2013

CF Awareness Month Blog #9 - Milestones & Challenges

I've learned over the last several years, that I really thrive on setting goals for myself. I feel very proud when I'm able to say that I've accomplished, or even surpassed, something I've been working toward. I also find it more motivating that I have them all posted on this blog so that my readers can hold me accountable too, if I ever start to slack.

Here are some of my personal greatest milestones:

  • Going to college & graduating in four years
  • Getting married!
  • Running four 5Ks
  • Having my own Kindergarten classroom
  • I'm almost 25 years old and have never been hospitalized due to my CF

Here are some of my current/biggest challenges:
  • Staying 100% compliant with ALL of my treatments for an entire year
  • Getting pregnant
  • Getting my FEV1 into the 90% and keeping it there!

Wednesday, May 8, 2013

CF Awareness Month Blog #8 - Non Compliance

I feel like I could write a book on this topic...since I was non-compliant for the first 20 years of my life! I'm very proud to say that streak has ended and I'm finally on the right track with taking care of my body/health.

As I child, I was not taught the importance of my treatments (then it was mostly nebulizers and manual chest percussions because the Vest was not made). In middle school, when the Vest came out, I felt like I was diagnosed with CF for the first time because it was the first time that daily treatments were "forced" (as I felt) upon me. I didn't understand why all of a sudden I had to start doing all of this stuff when I didn't even feel sick. And I hated that the treatments made me cough because then that made me feel even less 'normal' like I had been for the past 13-14 years.

It was a constant fight between my parents and I throughout middle school and high school. I came up with every excuse in the book: "I just ate and it hurts my stomach; I'm tired; I have homework; they don't even do anything for me; I want to go hang out with my friends"...I was very rebellious against doing my treatments because I did not want that to become my 'normal' or part of my routine. I did not want to accept CF as a regular part of my life - I wasn't ready.

What I didn't realize then, that I do now, was that I could have been making myself even healthier and feeling better than I was! But I feel like every person Cystic Fibrosis needs to learn this on their own. Sure they're going to hear it from their doctor, but it's something they need to realize on their own time. From my experience, it seems like a lot of CF teens go through a similar stage that I went through, and I'm sure our parents were scared out of their minds because we're not taking care of ourselves. But if it takes seeing their PFTs going down, or maybe as extreme as a hospital stay to get that wake up call, then sometimes we need to realize this on our own to then take ownership of our health.

Turns out that I wasn't ready to take complete ownership of my disease until I met someone I wanted to spend the rest of my life with. I didn't want Tim to have a sick girlfriend in college. I didn't want him to be embarrassed by me, and I didn't want to hold us back from doing normal things together because I was sick. Being with Tim in college was (and is still) my motivation to keep myself healthy. I want to be around for/with him for as long as possible. What kind of wife would I be for him if I neglected my health?

So if you're a cyster or fibro who's struggling with your treatments, my advice to you is find your motivation. What do you want to do with your life? Will you be able to do that if you're not healthy? Set goals for yourself - start small, but setting goals was a huge part of how I became so compliant. And start now. There's no point in saying, I'll start doing all of my treatments next week -- do it now. It's not easy, but it is possible! NO excuses and don't give up!!!

Tuesday, May 7, 2013

CF Awareness Month Blog #7 - School

When I was in elementary school, I remember my mom would always give my new teacher a pamphlet about Cystic Fibrosis at the beginning of each school year. I remember being allowed to use the bathroom when needed and I had to see the school nurse every single day before lunch to get my enzymes. The only time I would miss school was for my 3-4 doctor appointments throughout the year, and we really tried to schedule them over Thanksgiving/Christmas/Spring/Summer breaks so I wouldn't have to miss school. Thankfully, having Cystic Fibrosis didn't affect my elementary years too much.

June 2006 - High School Graduation
In middle school and into high school, the Vest came out and that's when CF starting playing a much more prominent role in my life, that I was not happy about. This still didn't affect my schooling, (but it did affect the relationship between my parents and I) I was let out of my class right before lunch about a minute early each day so that I could make it to the nurse to get my enzymes before passing periods began...but that's about it.

I've always planned on going to college. I never even thought that CF would prevent me from that. I've also always wanted to be a teacher and never let CF get in the way of making that my career. When I was applying to colleges, I only looked in-state because I knew that I wanted to stay close to my CF clinic because I had such great ties there. For me, going to college was a huge step in my independence from my parents. I was living on my own, I had to prove to them (and myself & doctor) that I could take care of myself on my own. *My first semester of college, my lung function actually went UP!* I was in charge of refilling my prescriptions, scheduling my own doctor appointments around classes and doing my treatments.

May 2010 - College Graduation
I'm not going to lie, it was not easy. I struggled to do my Vest & nebs everyday. I definitely didn't do them everyday. I was one of those patients that would think, "I feel fine, why do I need to do my treatments?" Or "It's fine if I just skip this one tonight." Which of course would turn into skipping several. Thankfully, I never became super sick while in college, but my lung function was in the 70s at that time. It wasn't until the end of college, my senior year probably, when Tim and I got engaged that I needed to start kicking my own butt - no one was going to do it for me and no one should have to. During our engagement, my goal for the wedding was to not cough during our ceremony (I know, it sounds weird, but I didn't want to...don't know how to explain it). That's when I really starting pushing myself to be better about my treatments. After I graduated in June, then we got married in October, I was at my healthiest weight and lung function. :-)

Clearly, my 100% compliance, exercise and eating better didn't happen over night. It's something that I've been working on for years and I'm still working on. I think it's something I'm always going to be perfecting.

Anyway, I didn't let CF get in the way of my schooling and/or pursuing my goals. I made it through four years of college with a degree in Elementary Education. I worked as a teaching assistant for two years before finding this WONDERFUL job as a Kindergarten teacher this year (which is almost over :( ). Still "being in school", I can say that I still don't let CF get in my way. Yes, I have lost weight, but I'm learning to adjust. It's not the end of the world. I'm doing something that I absolutely love, so I will make it work!

Monday, May 6, 2013

CF Awareness Month Blog #6 - Clinic

I've posted a lot of very in-depth blogs about my clinic visits and you can read those under my Health Stats tab. But I'll give an overview for this post, too.

Growing up, I went to my CF clinic every three months and once a year, I'd go to the 'big hospital' in Chicago to get my PFTs done on the big machine, chest x-ray, lab work...the works. I had the same doctor for most of my childhood (there was maybe a year where our insurance changed and I had to switch to this awful doctor, but luckily, I got switched back!) and she was excellent. When I was 17-18, she started talking to me about switching to the adult CF clinic. I chose a doctor who had experience with pediatrics and adults because I thought that would be a good transition.

My current adult specialist was referred by my peds doctor and I couldn't be happier with her. She's wonderful!! I met her when I was 18 or 19, the summer between my freshman and sophomore year of college. Tim came with me to that appointment to meet her and I went in with a giant list of questions because I wanted to make sure she knew about me and what I wanted for my health. She was so understanding and patient with me and answered all of my questions that day. Since then, six years later, she's still extremely understanding and full of information. She has taught me so much about my disease and how to take better care of myself. I respect her opinion greatly and I know that when I'm there, she has my best interest in mind and that we're working together to do everything to keep me healthy.

As for my clinic visits themselves, I try to prepare ahead as much as I can. Since my clinic is over 3 hours away, I really try to make the most of my time there. I make a list of questions ahead of time, write down anything I've noticed about my health since I've seen her last, I bring my big medical binder (which everyone always comments on how organized I am) to pull up any recent test results. I make sure to bring a large bag with me for samples or anything I accumulate while I'm there. I also usually pack lots of snacks - this last time I went as far as just packing my lunch bag - because I know I'll be there for a long time and I don't want to stop anywhere nearby (not a good neighborhood) to grab something to eat.

It can be stressful at times to make sure I get in everything I wanted while I'm with my doctor because she's not always easy to reach in between appointments. And I always hate when I go to clinic with a cold, because I feel like its not a true reflection of how I've been feeling over the last three-four months. But luckily my doctor is very understanding of that and she's always great at helping me through it.

Overall, my clinic visits are a big deal to me. It's where I can really see the results of my hard work, my compliance to my treatments and exercise, and get a feel for my weight gain. After I get my clinic results, then I make a plan and act on it for the next few months to see my results again. It's hard when it's only every few months (and so far away) when I go there on a 'bad day', but I just have to remind myself, it's not always about the numbers, it's about how I feel!! 

Sunday, May 5, 2013

CF Awareness Month Blog #5 - Diet

As soon as I saw this topic, I shook my head and rolled my eyes...this has been a problem my entire life! Every doctor appointment growing up I just remember them saying. "We'd really like you to gain more weight." Easier said than done! I've posted lots of blogs on the topic of gaining weight, and it's really not fun. The way I see it, is that it's just as hard for me to put on weight as it is for a 'typical' person who wants to lose weight. Currently I'm trying to eat 3,000 calories a day, which may sound very easy. I used to think, "This part of CF is awesome, I can eat whatever I want." But I've really been trying to consume  much healthier 3,000 calories rather than crap...because I feel like crap (and I have to crap) when I'm putting junk into my body.

Basically, with CF, my body does not produce natural enzymes to break down food and absorb nutrients from my food. So if I don't take manufactured enzymes (Creon, Zenpep, etc) then everything goes right through me and it causes lots of bloating and stomach pains = not fun!! So before I eat anything, I have to take my synthetic enzymes to assist my body in breaking the food down and absorbing the nutrients. Even with taking these enzymes, my whole life I've still struggle with gaining and maintaining a 'healthy' weight, based on my BMI:

Generally speaking, your BMI tells you your current weight status. Here are the rankings and what they mean:

Right now I am 5'3.5'' tall and weigh 109lbs and using this BMI calculator, my BMI is 19 which is on the very low end of normal. My dietitian and CF doctor would like me to be at least 20-22 (which is 115-125 lbs). My goal is to juggle a full-time, physically demanding job, exercising several times a week, eating 3,000 calories per day and gain weight. To me all of those things don't go together, so I'm hoping that this summer when I'm not working, I'll be less stressed and burning less calories throughout the day which will help me gain weight...we'll see.

Just to give you an idea of what a typical daily diet consists of to achieve 3,000 calories:
Breakfast: 955 calories 
Scrambled Egg (78)
Two sausage patties (380)
Two slices of whole wheat bread w/ peanut butter (375)
8oz of 2% milk (122)

Lunch: 869 calories
Grilled pork chop - dinner leftovers (440)
Barbecue sauce (139)
Potato chips (150)
Yogurt (140)

Snack: 150 calories
One bag of popcorn (150)

Dinner: 1,059 calories
Bigger pork chop (587)
Barbecue sauce (139)
Corn (150)
12 oz of 2% milk (183)

Snack: 296 calories
Apple (126)
Caramel (170)

Total: 3,329 calories for one day - and this is on a good day. It's really hard to not feel like I'm eating all day long on days like this! Plus I'm burning a lot of calories at work because I'm on my feet all day long. Then subtract any calories burned from exercising that night, so this easily drops below 3,000 on those days.

I actually have an app on my phone and about once a week I'll track my calories for the day just to make sure that I'm getting enough. You can imagine how much food we go through in our house with me having to snack all the time!! It gets expensive eating like this! Can you see now why I shake my head and roll my eyes when this topic is brought up, it drives me nuts!! I feel like I am getting better about snacking on higher calorie things more often, it's just frustrating when I'm doing all of this and it's still not working, as in I'm still not gaining weight.

Saturday, May 4, 2013

CF Awareness Month Blog #4 - Illness & Admissions

Thankfully, this is something I don't have much experience with. Throughout my whole life, I've been relatively healthy for someone with Cystic Fibrosis. For the past 6-7 years, I've done a much better job taking care of myself and being proactive about my disease which I think has really helped keep me healthier, too. I've never been in the hospital since my surgery as a newborn. I am absolutely terrified for the day to come when my doctor tells me that my infections can no longer be controlled by oral antibiotics and that I have to start IV antibiotics.

Right now anytime that I catch a cold or develop some type of infection, I usually go on a two week round of oral antibiotics, typically Cipro. (I also alternate each month taking an inhaled/nebulized antibiotic TOBI - done every other month so I don't build up a resistance) And each time I go to my CF clinic appointments, I have to give a sputum (mucus) sample so they can test it in the lab to make sure my mucus still susceptible to Cirpo and a couple different oral antibiotics. Over time, a CF patient's body can build up a resistance to antibiotics, then you no longer have them as a choice when you get sick. Once you're body has built a resistance to all oral antibiotics, the only other choice is to receive them through IVs.

As of my last appointment, my mucus is still susceptible to all oral antibiotics...thank goodness!