The Life of a CF Mommy

Just nebbing Cayston while baby-wearing (Anna ~ one month)

My entire life I've dreamt of being a mommy, and I cannot tell you how amazing it feels to live out that dream each and every day! It really never crossed my mind that I couldn't/wouldn't be a mother because of my CF, and I'm very glad my disease hasn't held me back. With that said, it can sometimes be challenging working full time, taking care of an infant and taking care of myself...but I remind myself that this is normal & many people do it everyday. :) My biggest key to success is time management- thankfully that has always been one of my strong points.

Nursing while at clinic :-) ~9/25/14

The first week or two, after Anna was born, was probably the most difficult with keeping up with my treatments. Luckily my lung function was stable at the end of my pregnancy, so I felt really good lung-wise after delivery. I'll admit, though, I probably only did a handful of my treatments in those first two weeks because I just wanted to spend time snuggling my brand new baby. But one day, Tim finally called me out on it and I've only missed one treatment since.



CF mams & their babies :-)

For the last few years, my main motivation to getting/keeping myself healthy was to get pregnant. Now that Anna is finally here, I can't throw my health away! My motivation just has to adjust - I want and need to be the healthiest version of myself, for as long as I possibly can,  for my family. Treatments are not optional. I hope that I can show Anna that even though her Mommy has CF, I don't let it define who I am as a person or the way I live my life.

Our most recent picture together ~ 10/8/14

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. :-)

CF CLIMB!!

Pre-climb!

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! :-)

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. :-)

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.

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."

CF Awareness Month Blog #10 - Pros & Cons

Pros:

• 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!

Cons:

• 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.

14 Days and Counting

Two more weeks til the big move! I can't believe it. I apologize to my readers about not posting for a while, it's been a little hectic around here lately and there hasn't been much to write about. We've been starting to clean and pack up our current place while Tim's still working close to 50 hours a week and I was doing summer school and getting things together for my classroom.
Today was the last day of summer school, so I have the next two weeks completely free to finish getting everything washed, cleaned, organized, and packed while Tim's working.

As far as my commitment to exercise since my last post, I've failed. I think I've gone running two or three times since then, including tonight. It has been so disgustingly hot out that I just cannot haven't forced myself to get out there. I did check with the gym across the street, but they do not have open gym hours during the summer due to the kids camp they have going on everyday. I've got two weeks to turn myself around before we move. Since I literally have nothing planned, I have NO excuses now. So here's my new plan: Run two days, rest one day, run two days, rest one day, etc. That way I can have a 'schedule' so I'm not just randomly running whenever I feel like it. So tonight was my first run, so tomorrow morning I'll be out again. Then I'll rest on Sunday and be back at it Monday, Tuesday, Thursday and Friday -- I'll most likely go in the morning so that I hopefully miss the heat. I'm not going to go crazy with making sure I run all three miles of my route, but doing lots of alternating to get my legs and lungs back in shape like they were a month ago! 


Finally, I've filled out at least 40 pages of paperwork for my new job and I'll be 'officially' approved by the Board next week. I've been in my classroom to drop some of my materials off, and I'll be going down one more time before we move to meet with the Teacher Mentor Coordinator. While filling out the pages of paperwork, among it was my insurance information. I will still be able to attend my CF clinic in Chicago! I'm very excited about that even though it'll be a several hour drive, it's completely worth it to me. :-)


Again, I apologize for the boring post and the time it's been between posts, but there really hasn't been too much exciting stuff going on. At the end of next week I'll post some pictures of my classroom when I hopefully have it more decorated/organized! Til then, here's a sneak peek: 

View from the door
Yep, those are chalkboards - but I do have a whiteboard
to the right along the other wall and one behind my desk
you can see to the left.

2011: A Year of Reflection & Motivation

I cannot believe that I've had this blog for an entire year now! 2011 has definitely flown by this year - 72 (now 73) posts later, I've learned so much about myself in this year of writing, it has been amazing.

There have been some ups: Helping organize the first annual Great Strides in our town (and huge support from my family, friends, co-workers in raising money), our new apartment, the amazing development of Kalydeco!, we adopted our cat (Archie), celebrating our first wedding anniversary, becoming an aunt for the second time, I became an organ donor, and of course the beginning of a new me: 100% compliance since July 31st (153 days) and the addition of my exercise routine = increased PFTs!

And some downs: Several interviews but no teaching job, lots of doubts/worry about if having a child is the right thing for us - baby w/ CF or not?, and crappy/smoking/nasty neighbors.

But the 'ups' have definitely out-weighed the downs this year, and I cannot complain about that one bit. This has been a wonderful year of reflection and motivation for me and I appreciate all of you reading and commenting on my posts. I can't promise another 70-something posts next year, but I'll try my best. :-)

Goals for 2012:

• Get my FEV1 into the 90s and keep it there!
• Complete a 5K
• Keep forging ahead with our pregnancy discussions                                                                       and maybe become a mommy
• Find a full-time teaching position
• Stay as happy and healthy as I am now! :-)