30 Days of Blogging: Day 19

Day 19 - Your reflection in the mirror

This is probably my least favorite day so far because I don't take pictures of myself in the mirror. I have a webcam on my computer that I've never used. I was messing with it this morning while doing my treatments and this is what I could get:

It's all grainy because my Vest was going at the moment, sorry.
Not too bad for 6:00am!

30 Days of Blogging: Day 18

Day 18 - Five things that irritate you
I'm apologizing in advance because it's so long, but I have to explain why these things irritate me.

1) Smoking (of any kind) - I've blogged about this before, but this is something that really irritates me. Now I have a couple friends who smoke, so it's not like I won't talk to someone because they smoke, but it still really drives me crazy that they still do it!
-You were born with a beautiful set of healthy, clear lungs to keep you healthy and last you your entire life. I was born with diseased, mucus-clogged lungs that might only last me thirty, forty or maybe fifty years, then hope that I can get a new pair before they completely fail me.
-You take your healthy lungs for granted and breathe in, by choice, harmful toxins and God-knows what else because you think your cool, or because it makes you feel good, or whatever your reason may be. I do at least an hour of breathing treatments a day and exercise regularly just to keep my lungs from deteriorating any faster.
-Your lungs still could last you until you're in your sixties, seventies or beyond, where you'll still end up with cancer and have to go through some pretty rough treatments, and you might still smoke...My lungs steadily decline while the amount of treatments I do will increase. Eventually I may need a lung (maybe double) transplant where I face the possibility of dying before receiving a transplant, or get another three-ten years out of my new lungs before rejection takes over. Hmm...see why this is a little irritating to me? I know this sounds harsh, but it's the way I see it and it's something I feel very strongly about. Maybe I should have put this in my 'passionate' post.

2) Parents who don't parent, leaving me (the education staff) to deal with their disrespectful children - Since I work in a school, I deal with all different types of children that come from many different backgrounds. It just kills me to see children as young as five who can be so disrespectful. Now before I go too far, all I'm going to say is if you're going to have a child, raise it! Take responsibility! You are the parent, not the teachers/school staff. Sure your children might hate you right now because you're making them do something they don't like, but they'll learn (even if it's years down the road) that it's because you care about them. I gave my parents a heck of a time with my treatments and all that, but looking back I know it was because they were trying to keep me healthy. Don't try to be their friend - you're not! That's why you're called the parent!

3) Changes in my eating routine - Yes, you'll probably think I'm crazy when I explain this to you, but it's true. I get very irritable/crabby when my meal routine is thrown off or when I'm hungry. I have to have cereal or oatmeal every work-day morning for breakfast. If I don't eat, it messes with my blood sugar around 9:30 or 10:00am (I don't have diabetes). If we don't have milk in the fridge, I get uneasy because I like to drink milk with every meal just about. I'm really weird about making sure that my husband and I have equal amounts of food when he makes dinner. I have no idea why I'm like this - the only thing I can think of is because I don't like feeling hungry. Ask my husband about this one and I guarantee you he'll sigh and roll his eyes!

4) When people misuse the words 'your' and 'you're' and spell 'definitely' wrong - Especially when they're education majors/teachers!!! Let me show you the correct way so you know for future reference:
Tonight we are going to your house. Your - it belongs to you
You never told me when you're (you are) coming over. You're - contraction of 'you' and 'are'
Definitely = definite + ly
And just for extra clarity:
The car is over there. There - a place
Their house is blue. Their - it belongs to them
They're in the blue house. They're = contraction of 'they' and 'are'

5) When a really good song comes on the radio right when you have to get out of the car - This one isn't as annoying and intense as the others, but it is one of those things that drives me a little crazy. I love music, as I've mentioned in many posts, and it can really set/change the mood for my day. Usually if I can spare the three minutes, I'll sit in the car and listen to it really loud!

30 Days of Blogging: Day 17

Day 17 - How you hope your future will be like

This post could be so long if I went into detail about what I want my future to be like and everything that I would want to happen, so I'm going to try to put it in a nutshell for you - I want to be happy every day of my life, no matter how long or short it is. I want to laugh everyday of my life, no matter how many days I get. I want to surround myself with people I love and just enjoy the life I was given. I want to keep myself healthy for as long as possible, and I hope that's going to get easier with the new drugs being created. No one is guaranteed a long life, anything can happen, so I hate to think that I have to be cautious just because of my CF. I'd love have children, experience being a mother, and maybe even one day a grandmother. I want to travel and experience other places and people in the world. So my hope for the future is for it to be: fun, enriching, healthy, new and exciting for many years to come. :-)

My First Blog Award

My awesome blogging buddy, Kayla, recognized me for this Liebster Blog Award the other day. Liebster is German for 'dearest' or 'favorite'. I thought that was so awesome to receive a cute little award for blogging about my life, and that someone likes my blog enough to recognize it, so thanks again, Kayla! Kayla is a 24 year old CFer from Tennessee who also has a degree in Elementary Education, and graduated in 2010 -- weird, huh? So I love reading her blog because our lives are so similar, I love to see what she's up to - she recently just increased her PFTs by 9%!!!. You can read her blog here. :-)

So here are the rules for the Liebster Blog Award:
1) Acknowledge the blogger who gave you the award by linking back to them. (Check)
2) Give this award to 5 other bloggers who have fewer than 200 readers. Let them know through a comment on their blog. (Check - below)
3) Post this wonderful award on your blog. (Check!)
4) Bask in the glory bestowed upon you and appreciate all the amazing bloggers out there. (Okay!)


Without further ado, here are the bloggers that I have chosen to pass the award onto:

1) I Have CF. So What?! - I met Lauren through CysticLife, I believe, or maybe another CF online group, I honestly don't remember anymore. She's definitely the one who inspired me to write my own blog and I don't know that I've ever thanked her for that, so THANKS LAUREN! Your blog is so inspirational to everyone, not just CFers. You go girl, keep up all of your hard work!! :-)
2) Breathing Deeply, Laughing Loudly, and Living Fully - I met Megan through CysticLife, she has a degree in education, is married to a teacher, and it turns out she only lives a little over an hour away from me and we go to the same CF clinic! (I love the internet!) We are at very similar places in our lives right now and we talk all the time. She's an amazing person and I'd love to meet her one day, as long as we stay three feet away! :)
3) Inhaling Hope - Inhaling Hope is another great friend from CysticLife in her 20s with CF and recently pregnant! She is currently working in a school (notice all of the education connections) while blogging about what it's like to have CF and be pregnant. I love reading all of her posts because she's not afraid to leave out any details - it's wonderful. Can't wait to see your Peanut!
4) My Life as a Livingston - Jenny is a mom, wife, step-mom and a CFer - woo! I love reading about how she deals with her CF and two girls and just life in general. She's also a person I found through CysticLife.
5) So Much For the Plan - I honestly don't remember how I came across Young Grasshopper's blog, but I instantly added it to my favorites! She's a recently diagnosed CFer and if that's not enough change in her life, she has five month old triplets!!

Each of these ladies has been an inspiration in my life in one way or another and I look forward to all of their new blog posts! It's wonderful to know that there are other people in the world that are going/have gone through through similar things as me, or are experiencing things that I hope to experience one day myself. If you've got some time, I strongly suggest checking out each of their stories.

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.

30 Days of Blogging: Day 15

Day 15 - Something you don't leave the house without

My enzymes! I can't eat without these because they digest my food for me. Every once in a while I forget if I've taken my enzymes before I eat because it becomes so automatic - you'd think I'd remember, but sometimes I feel like an old person when I'm half way through my meal and I think, "Oh no! Did I take my enzymes?!" Haha. Then usually I just take a couple more to be on the safe side. If I forget to take my enzymes, especially with a high-fat/calorie meal, I'll have pretty severe stomach pains and a trip to the bathroom (sorry, but it's true). So I'd rather take a couple extra than none at all!
I started swallowing my enzymes when I was three or four, but before that my mom had to open the capsule and mix the contents into applesauce so I could take them. I also used to swallow them one at a time for the longest time, but now I take up to six at one time. I take more enzymes with bigger, fattier meals. My mom would always use a little film canister (the black ones with the gray or black lid) to carry my enzymes in her purse. When I was in high school, I used to leave bottles of enzymes at my friends' houses in case I ever forgot to bring some or ran out. So if you ever see me popping pills (especially if it's right before I eat), I'm not on drugs - illegally - I'm just taking my enzymes so I can digest my food. :-)

30 Days of Blogging: Day 14

Day 14 - TV Show (or shows) you're currently addicted to

This show is really awesome! We started watching it last  year and it became addicting really fast! The second season should be starting up again really soon and I'm very excited about it. Basically, it's about a girl, Rosie, who was found murdered, and each episode is a day in the investigation to figure out who killed her. But at the end of every episode, you have a different idea of who you think did it - it's crazy, but very well written. I strongly suggest this one!

Tim got me hooked onto this show. We started watching the first season from the beginning and I wasn't really hooked, but I gave it a shot. The second season is half way through and it's much better than the first. I definitely recommend this to anyone who has an interest in zombies ('walkers' as they call them in the show) or even if you don't. I'm not usually a fan of zombie movies/shows, but this one goes beyond that and develops their characters well.

I've watched both seasons of Teen Mom since they first started, and I'm hooked on both. As my cousin described it, "It's like watching a car crash - you can't help but watch." I know a lot of the girls are not the best examples of moms, but I honestly think because it involves children, I watch it. I love kids and I love seeing the kids grow on these shows. And yes, I do get sucked into their drama and I yell at the TV when the moms do stupid things, but I just can't help it.  It's a guilty pleasure :-)

I also enjoy a good (nasty) episode of Hoarders (preferably the A&E version) from time to time. We also watch a lot of crime shows on the ID station. I love Law & Order:SVU, Criminal Minds and 48 Hours Mystery. And I have to admit, sometimes I enjoy watching gun shows with Tim. As much as I hate guns and would probably never touch one, I really like the show Sons of Guns and I've watched One Man Army several times. And finally, our newest show that we watch is Ink Master which is a reality show to find the 'best tattoo artist' where they have challenges and eliminations every week. It's really interesting to see how much work/detail/art goes into every tattoo and how they get critiqued every week. Makes me a little nervous to get a tattoo because I'm afraid I'll start getting really picky the more I watch this show!

Amazing, Fantastic, Wonderful CF Drug Advancement Today!!!

Chances are you've already heard/read about the wonderful thing I'm going to post about if you're on CysticLife or you're my Facebook friend, but that's okay! It's too spectacular to not read it again!

This is how I feel right now!!

The FDA approved Kalydeco, the new drug that targets the underlying cause of CF in patients with the G551D mutation (ME!) - about 4% of the CF population!!!!! I'm currently 'too healthy', according to my CF doctor, to receive the drug right now, but that is a-okay with me. :-)

Here's what the Cystic Fibrosis Foundation had to say about it. 

Here's what the FDA had to say about it.

Here's what Vertex (the company who is producing the drug) had to say about it.

It's such an amazing feeling to know that all of the clinical trials/studies have definitely paid off! But it is SO important to keep spreading awareness and raising money so that the other 96% of CF patients can see their new medication come through the pipeline and get FDA approval, too. There are several clinical trials going on right now for a combination drug for those with CF with the most common mutation, Delta F508.