Saturday, November 23, 2013

Thankful November, Week 4

Each day in November, I'm taking the time to post something that I'm thankful for - no matter how big or small - then I'm posting them at the end of the week. Click these links to see week 1, week 2, and week 3.

17) Today I'm extra thankful for the roof over our head! There were a lot of severe storms that tore through the Midwest today, and thankfully they stayed clear of our town and house.

18) Pandora radio - sounds silly and insignificant, but I love it. I don't want to have to pay iTunes a dollar per song to download (legally). I love that I can change the station depending on my mood (ie: Michael Buble Christmas - I'll have to bust that one out soon...after Thanksgiving!) and that it introduces me to new songs. If you haven't caught on - I love listening to music! :-)

19) I'm very happy to be done taking my Cipro! Although I'm still not feeling 100% (I need to get better about doing extra treatments), I'm just glad that I'm not taking Cipro anymore. I am also happy to report that this was the first time, that I can remember, that it didn't give me huge tummy troubles! I'm wondering if that's because I'm now taking daily probiotics....which leads me into tomorrow's post.

20) I'm super thankful that someone created probiotics!!! They've completely changed my life! I am no longer extremely gassy and/or bloated daily....or ever! I feel like a "normal" person as far as that's all concerned! I now go to the bathroom once...did you read that CFers, ONCE a day and feel SO much better! If you are not taking them, I strongly  recommend talking to your doctor about what benefits they could have for you!

21) Modern Medicine/Research - I'd probably be dead if it weren't for all of the advances in medicine and research today. I know that sounds terrible, but it's true. If I were born with CF 50 years ago, pretty much all of the medication I take wouldn't be around. I'm very, very lucky and thankful to have access to the medications, and team of wonderful doctors and nurses, that I need.

22) I'm thankful for a night out. I'm not usually one to go out much, I tend to be a home-body, but I'm glad I went out tonight with some teacher friends. We had a lot of laughs and a great time. :-)

23) Today I'm especially thankful to have heat! With it being about 30 degrees today, I'm very glad that we have that luxury. And congrats to my cyster, Megan, who ran her first 5K today in this terrible weather!! So proud of you! :)

Saturday, November 16, 2013

Thankful November, Week 3

Each day of November, I'm going to take some time to recognize at least one thing I'm thankful for, no matter how big or small, then I'll post them at the end of the week. Go here for the first week, and here for the second week.

9) I'm thankful for understanding friends. Today, we spent the day with our friend, Tony because he lives about five minutes from where we're doing our CLIMB tomorrow. This evening, another one of our friends, Chris, came up to hang out with us, too. The guys decided they wanted to go out to an arcade bar, and I decided I was going to call it a night - and I didn't get any crap from them this time! They understood that I wasn't feeling well and wanted to catch up on my sleep, especially before a big day and I just really appreciate that! I also love that Tony was asking me all about how I've been doing and everything I've been taking, like my Kalydeco. He works as an athletic trainer at a high school and is very health-conscious (he's completed TWO Iron Man events!). We compared digestive enzymes (mine are way more powerful!) and he asked lots of questions about how K has been helping me. I love educating others more about my CF, and I appreciate that he cares enough to ask. And thank you, Chris, for letting me sleep! :)

10) "I'm alive and well." Today, Tim and I completed the CF CLIMB! And although I'm in the middle of a nasty cold/sickness/infection - whatever it is - I was reminded that I'm still doing well. I'm still well enough to complete a physical challenge such as climbing 58 flights of stairs. I'm very thankful to be as healthy as I am today. Today was also a huge reminder for how much exercise is good for my health. I'm really hoping I can get back into an exercising routine to make myself even healthier. :)
I heard this song on the radio a week or so ago and I can't get enough of it! Here's my favorite part:

"But not me, I'm alive
And today you know that's good enough for me
Breathin' in and out's a blessin' can't you see
Today's the first day of the rest of my life
And I'm alive, and well.
I'm alive, and well." 
~I'm Alive by Kenny Chesney & Dave Matthews~

11) Today I'm thankful for motivation, especially from my CF friends! After posting about our CLIMB, I got a lot of awesome feedback, and it made me want to do more. I miss the feeling of setting a fitness goal and the best part - the feeling I get after I accomplish it. So today I set a new goal and that's to run another 5K. But not just any 5K - this one is the Rock CF River (half marathon or) 5K in Michigan, put on by a great motivator, and fellow CFer, named Emily Schaller. Today I learned that several CFers that I've 'met' online from around the country are all coming out to either run the Half or 5K, and I'd love to join them. So my motivation for this winter is to get my butt back in shape for this race at the end of March! :-)

12) I'm thankful for the Cystic Fibrosis Foundation and anyone and everyone who has ever donated to them! Without your monetary support, I would not have many of the medications that I take today. Nearly 90 cents of every dollar donated to the CFF goes directly to CF research and education. That research (which is extremely expensive) is for all the new medications that go to years of clinical trials before becoming available to patients. Read this article to learn much more about the CFF and how far they've come - it's a great read! THANK YOU, THANK YOU, THANK YOU!!!! You're helping to keep the CF community alive! :-)

13) I'm thankful for a HUSKIE victory tonight!!! GO NIU!!

14) I'm thankful for the roof over my head! I love our new house and we're very lucky to be able to own our own home. It's an awesome feeling to finally not be renting anymore, and to be able to do whatever we want to our house.

15) Tonight, I'm thankful for YOU, that's right, you, reading this blog right now! Without you (the readers), there'd be absolutely no point in blogging. I love knowing that people care to read what I have to say, whether it's about my CF, teaching, or just life in general. I hope that with this blog, someone somewhere is connecting with what I have to say and not feeling like they're the only one out there. I hope that someone somewhere is learning about CF through this blog. I hope that someone has benefited/gotten some advice from any of my posts. Just like the CF Living videos, I do this blog not only to raise awareness about what CF is and how I deal with it, but also to hopefully be that resource that someone needs. I was there once and I was looking for something like this - to tell me I'm not going through this crazy thing called cystic fibrosis alone - and I hope that I can be that for someone else. :)

16) Today, I'm thankful for weekends. Tim and I are enjoying a nice relaxing day filled with errands this morning, a late lunch, and a lovely nap on the couch! It's really nice not having anything planned this weekend, finally, and to be able to spend some relaxing, stress-free time with my husband. :-)

Monday, November 11, 2013

It Got Me

I've been bit by the exercise bug once again! Yesterday's climb has motivated me to keep exercising! So this morning I went out for my first run (aka: slow jog) since Brett's Run in June. I went about a mile and a half, switching between slowly jogging and walking while hacking up a lung. It felt wonderful!

Here's my next goal: 
The Rock CF Rivers Half Marathon, 5K Run/Walk in Grosse Ile, Michigan (I'll be doing the 5K, not the half).

This race is put together by the lovely Emily Schaller who created the Rock CF Foundation (where I got the awesome shirt I wore during the CLIMB yesterday) and also has CF. She's been one of many CF motivators for me and I'd LOVE to run a CF fundraising specific 5K, and meet her! I'm looking for anyone who's willing to make the road trip with me. It's not until March 30th, so we've all got time to prepare and train. I'm serious. I want to go! And, if you have CF, you can sign up for free. :) There are going to be people coming from all over the country to run this and I'd love to be a part of that - now who's with me?!

Sunday, November 10, 2013


Today Tim & I completed our first CF CLIMB in Chicago! We climbed 58 flights, or 1,392 stairs! Since I've been feeling pretty crappy over the past couple days (the worst I've felt in a while), I wasn't sure how I was going to do, but my goal was to finish in under thirty minutes (well, really just to finish).
When we lined up to start, there were three groups: Elite (projected finish time under 12 minutes), Competitive (under 20 minutes) and Recreational. I was definitely trying to get in the recreational area, but we all kind of lumped together. They had us start at the bottom, one at a time, spread out by about 5 seconds each. While Tim and I were in line, we were trying to figure out a strategy of how to pace ourselves - Do we run up the stairs? One at a time? Or every other? We had no idea what to expect! I started off slow, just walking up the steps, then started to do every other. Once I hit the sixth-seventh floors, I was completely exhausted!! My legs were burning, I was breathing very heavily - I had no idea how I was going to make it up another 50 flights! But I just kept telling myself that there was no stopping now! Every few flights, I would stop on the landing and catch my breath. At floor 22, there was a water & Gatorade station, so I stopped and got a drink. The next few flights felt fantastic after getting re-hydrated, but that didn't last too long. There was a lot of motivational self-talk! I kept reminding myself that I was there because I CAN do it, and that I was doing it for those who couldn't. It was just as much a physical challenge as a mental one for me.
Every floor was marked with a CF sign either with a fun fact, or cheering on a specific team. One of the posters in the 40s said something like, "This sounded like a good idea!" - I really liked that one! Once I got to the second rest stop, floor 43, I knew I was so close! I still kept stopping every two-three flights, and when I got to floor 55, I took a pretty quick break because I could hear people cheering above me and saying, "Congratulations! You did it!" I pushed through my painful thighs and heavy breathing to get to the top! I cannot wait to see the picture they took of me going across the finish -- I'm sure it was a mixture of joy, exhaustion and pride! As soon as I got up there, I saw Tim (completely red in the face and looking exhausted too!). I grabbed a bottle of water and we walked around the floor for a few minutes, finding a warehouse looking room to cool off in with other climbers. I was so proud of Tim when he told me that he finished in 15 minutes (the guy told him as he crossed the finish), so I was curious what my time would be. Tim also told me that this was one of the "hardest things he's ever done" and I definitely had to agree with him! We caught the hot elevator ride back down to the first floor to celebrate our accomplishment! As we came off the elevator, we each received a CF CLIMB 2013 medal. :)
We hung around the 'after party' for a little while, and was able to chat with my cf buddy, Cheriz, who I met last month at the Peoria Great Strides! Her boyfriend, Andrew, completed the climb today, too! They posted our times on the wall of the room and I was anxious to see my time, hoping it was under thirty minutes. I finished with a time of 22:04! Way better than I thought I did!! Tim's official finish time was 15:09! - that's competitive quality! :-)
They had a quick awards ceremony for the team and individual who raised the most money. They also gave an award to the male and female with the fastest time. The male finished in just over 7 minutes (WHAT?!?!) and the female in just over 10 minutes!!! Holy cow, I don't know how they did it! And overall, the event raised over $100,000 for the Cystic Fibrosis Foundation!!!!! THANK YOU TO ALL WHO HELPED US REACH THAT AMOUNT!!! 

I'm really excited and proud that I was able to accomplish something like this (and I love my husband for being such a trooper and doing it with me, and totally kicking ass!), especially with how awful I've felt over the last two days. I felt AMAZING after I finished! I was breathing deeper than I have in a few days, and I've gotten a lot of nasty junk up this afternoon. This event was a HUGE reminder of how much exercise has a positive impact on my lungs. My goal is to get back into a routine of exercising again, even if it's starting off slow with our medicine ball workouts again. I'd like to keep up some in-home workouts this winter and then get back outside and running in the spring. Surprisingly, I miss it. I miss the feeling of accomplishment. I miss kicking CF's booty by challenging my body. I need to get back into it, and I will! :-)

Friday, November 8, 2013

Thankful November, Week 2

Each day of November, I'm going to take some time to recognize at least one thing I'm thankful for - no matter how big or small, then I'll post them at the end of the week. Go here to see the first week. I should also mention, that these are not in any specific order, other than one thought per day.

3) Dr. Maria Dowell, my CF doctor! She is AMAZING! I had a wonderful peds doctor, but I felt that as soon as I moved to the adult clinic, that I was finally in charge of my own health. Dr. Dowell helped me realize that I was in charge of my CF, not that CF was in charge of me. I thought there was no way to gain back lung function that I had lost. She opened my eyes to see that if I took the job of taking care of myself seriously, then I could fight back at CF, and that's exactly what I've done over the last six-seven years since being with her. Dr. Dowell gave me the kick in the ass that I very-much needed to keep myself healthy for as long as possible! She is full of information, extremely understanding, and is a great person to talk to.  I know that when I see/talk to her, she has my best interest in mind.  I look forward to my appointments with her several times a year, not just to see how my health is doing, but just to sit and talk with her. I appreciate, more than I can express in words, everything that she has done for me, and I hope that we can maintain this great relationship for years to come!

4) Speaking of amazing people, there's my husband, Tim! He's the second 'kick in the ass' that I needed to wake myself up and live my life. To be honest, the first day I met Tim, I didn't have this "oh my goodness, he's the one" feeling, and he was actually the one who pursued me (read about how we met, here). But a few months later, after talking to him one night online, I said to myself, "I'm gonna marry this guy!" and the called my best friend to make sure I wasn't going crazy! Haha!
Here we are seven years later and still as happy as can be. Tim is perfect for me. He laughs at my stupid jokes, and I laugh at his. He 'kept me in line' in college with my healthcare, which motivated me to be the healthiest version of myself, for him. He'll go along with me when I sign us up for 5Ks and stair climbs, and usually beat me. :) He puts up with my excess mucus like a champ and rarely ever complains. ;) He is supportive, a listener, understanding, open, happy, and could I ask for anything more??

5) Today, I'm going to go with music and the ability to listen to it (I think it's something we take for granted). Without my ability to hear, I'd miss out on all the beautiful and fun music that I like to listen to. There are some days where music just gets me through. Its something I enjoy listening to and singing along with, especially country music. I love that songs are powerful enough to bring me back to a specific time and place, and bring back so many memories and emotions. I love that there are different types of music and like to switch it up a bit depending on my mood. Music is good for my soul. :-)

6) I'm thankful for the opportunity to shoot the Day in the Life Videos with! When I was a teenager, hating and trying to deal with my CF, it was videos just like these that I was looking for! I hope that by participating in these videos, and sharing my story, someone somewhere is getting the little pick-me-up, motivation, advice and/or information that they need to keep themselves going! I never thought I'd be able to do something like this, and it was so fun making the videos! The cfliving people are the best! :-)

And if you haven't seen it yet, here's the latest video on routines & goals. I thrive on routine and schedule, although I still know how to be flexible when I have to be. Having a routine and setting goals for myself keeps me motivated and on track with all of my treatments! Just so happens that today is my 250th day of 100% compliance....haven't missed a vest or neb in 250 days!!

7) Today I'm thankful for technology. I love having my blog, Facebook page & groups, etc, to connect with family, friends and other CF patients around the world. I've met so many wonderful people who I would never have met if it wasn't for online communities and the internet. Today, I'm especially thankful for technology because I'm starting to catch a cold/virus/something, so I was able to email my doctor & nurse this morning to call in some Cipro for me. It's amazing that I'm able to get in touch with my doctor in Chicago and get the drugs I need the same day! I'm also thankful for the advice & information I get from other CFers I'm able to connect with through social media. Several suggested doing sinus rinses when catching a cold (and regularly) to help with sinuses. I bought one while at Walgreens picking up my Cipro and tried it this evening - what a WEIRD feeling! I still feel stuffed up on one side, but I'll keep at it over the next few days to see if it helps relieve my cold a bit faster. Thanks everyone for your help! :)

8) I'm grateful to have a 'recovery' day on Monday. I've got Monday off due to Veteran's Day, and I can already foresee that becoming a very lazy day. I've felt pretty crumby all day today and am looking forward to finishing up this third treatment so I can get to bed. Tomorrow we're heading up to Chicago to hang out with some friends and then we have the CF CLIMB on Sunday! Tim and I will be climbing 58 flights of stairs. My goal is to finish in under 30 minutes, and I'm really hoping this cold doesn't slow me down! I am thankful though, that I'll have Monday of to be completely lazy and get my schoolwork done in my PJs...and rest my legs!

Monday, November 4, 2013

Gets Me Every Time

I absolutely LOVE this video!!! It gets me teary and gives me the chills no matter how many times I watch it!!! And, word on the street is that there are four CF patients (a couple are obvious, like the lead wearing her purple :) ) in the video! Please pass it on! 


Saturday, November 2, 2013

Thankful November

Each day of November, I'm going to take some time to recognize at least one thing that I'm thankful for - no matter how big or small. I'll then post them at the end of the week. I've been trying to do this weekly with my "Positive Thoughts Thursday" posts, but I thought I'd try daily for the month of November. :)

1) I'm thankful for working in a building with supportive and super-fun coworkers! Today we celebrated that we reduced our number of referrals in October by about 50%! To celebrate this, we decided to do a Fear Factor Game. The students watched as the teachers completed some fun, some disgusting, and some just weird games. I used my toes to take marbles out of an ice cold bucket of water (got out 16 in a minute); cracked an unmarked egg on my forehead (mine was hardboiled, phew!); wrapped one of my students as a mummy with toilet paper (and failed miserably); ate a spoonful of "cat food" (SPAM); and finally dug "worms" out of "dirt" with my teeth (got 7 out of 8 in a minute....and sinuses full of pudding!). Oh, and I used a "lifeline" to have a student eat a spoonful of blended Burger King (fries, a burger, coke, and a Kit-Kat! Gross!! Poor kid spit it out! Haha!). I ended up in third place out of the nine primary teachers! I just love that I'm able to work in such a fun environment everyday! For those of you who don't love your job, you're missing out!!!!

2) Oh man, today's item is hard to choose...I'm going to have to lump it into 'in-laws' today. We had a wonderful day helping Tim's sister's family move. We had lots of laughs and good conversation. I am so lucky and thankful to call them my family, too.

Side note: I also learned how annoying assembling a crib is today! Tim's great aunt Shirley & I assembled, then took apart, then reassembled (to make sure we used ALL the screws that time!) the crib for our youngest nephew, Liam. I now understand why in movies/tv shows/commercials they always show people frustrated over assembling a crib...I get it now!! Haha!