2013

Here's 102 blog posts from this year summed up into one. This year was full of exciting adventures for Tim and I, the most exciting being that we finally purchased our first home!

• At the beginning of this year, I was presented with the possibility of having CFRD. Thankfully after meeting a wonderful endocrinologist in Chicago, he taught me how to adjust my diet to keep my sugars in check without having to have insulin injections, yay!
• In February, unfortunately I had to reset my compliance count due to lovely mail order pharmacy mix ups. I did, however, proudly complete 100% of my treatments for 352 days!! I reset my count on March 1st, which puts me at 312 days today!
• Also in March, we celebrated Tim's great grandma's 99th birthday, learned about the new CFF regulations (which caused a huge uproar and debate among CFers), and we got the ball rolling on the CF Living video phone interviews and plans!!
• April was a busy month! Tim and I shot our CF Living footage which was harder than I thought, but SO rewarding! I attended another Great Strides in DeKalb, the TOBI Podhaler was released, our kitten, Ozzie, was born, and I started taking the best thing ever = PROBIOTICS!.
• May was pretty uneventful, aside from me finishing up my first year of teaching! Tim celebrated his 27th birthday and we were able to spend some quality time with our adorable nephew, Isaac.
•  In June, we finalized our first house mess, and found a house that we both loved and went under contract on it. We traveled to Tennessee to meet our newest nephew, Liam, and spend time with family. Tim also kicked my butt in Brett's Run!
• July was a busy, fun-filled month! I attended my best friend's bachelorette party, spent lots of time with family, brought Ozzie home, went to Country Thunder and became a home-owner!!
• Our first chapter of our Day in the Life series finally came out and I was so surprised and humbled by all of the amazing and supportive feedback. I also started my second year of teaching - this year in first grade. And of course, started taking Kalydeco on August 30.
• In September, Tim and I continued to work on our house, we did our annual camping trip with his family which is always a great time, and we attended the most love-filled wedding I've ever been to - Jessie & Jeremy's wedding. :-)
• October is always special to me because its our anniversary month. We celebrated our third anniversary this year and we're not just married anymore, but we're now married home-owners! Tim and I also went to the Peoria Great Strides which was excellent! I was asked to speak there and we also met my blogger, CF friend, Cheriz. Finally, I had my first post-Kalydeco clinic visit where I gained 6lbs, my FEV1 increased by 5% and my small airway lung function went up by 18%!!!
• In November, Tim and I conquered 58 flights of stairs at our first CF CLIMB! Then I signed us up for the CF Rock Rivers 5K in Michigan in March, put on by the lovely Emily Schaller.
• December was full of ups and downs, and sadly ended on a very low note. We lost our great friend Jeremy on December 31. We celebrated his life in Ohio with Jessie and his family the first weekend in January, and I'm very glad we were able to attend to say our 'see you laters'.

I feel like things can only go up from here and I need to keep that positive attitude. Here's to a happy, healthy, productive and positive 2014!!!

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 loving....how 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 cfliving.com! 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!

A Day in the Life: Chapter One

I am SO excited to finally share this with you!!!! I've hinted at something coming up for a while now and I can finally share this wonderful experience with you! I was approached at the beginning of this year by the people at CF Living because they were looking for a "fresh face" for 2013. Someone had referred me to them, which I found so inspiring. After several phone interviews, they came out one weekend in April to film Tim and I discussing our lives with CF. I am so proud and happy that Tim was willing to do this with me! I feel it's so important to get his perspective, not just mine, because really it's something he has to deal with, too. 

I cannot believe the amazing amount of feedback there's been from the video since CF Living released it one week ago. The video has had over 300 likes, over 140 shares and over 50 comments! And that's just off of the one posted by CF Living! I've seen fellow CFers, co-workers, friends, family and people I don't even know, share the video on their Facebook & Twitter pages, which I appreciate so much - the more awareness of Cystic Fibrosis, the better!!! 

I never thought I'd have the opportunity to be a part of something like this, and when the chance came up there was NO way I could turn it down! THIS is exactly what I was looking for when I was going through my teenage years when I didn't want to accept CF as a part of my life. To read all of the comments about how I'm 'inspiring', 'motivating', calling me a 'role model', telling me that I 'give them hope' it's an unbelievably amazing feeling! 

I can't wait until the next four chapters (Work Life, Routine & Goals, Marriage & Family, and Exercise & Nutrition) are out because they each touch on their own subject and I think they'll spark a lot of great conversations. 

So without further ado, if you haven't seen it yet, or you'd like to watch it again, here's Chapter One: Meet Colleen.

A Day in the Life: Chapter 1, Meet Colleen

New CFF Regulations

I received an email today from the Cystic Fibrosis Foundation informing me on the new infection control regulations between CFers. (My thoughts about it are below)

CF Foundation Updates Infection Prevention and Control Policy for All Foundation Events and Meetings

March 14, 2013

The Cystic Fibrosis Foundation recently updated its Infection Prevention and Control Policy for all Foundation events, meetings and offices to protect the health of people with cystic fibrosis.

The Foundation took this step based on increasing medical evidence of a greater risk that people with CF could spread destructive germs to others with CF, which may lead to severe or worsening lung disease. The new policy reflects the advice of leading CF medical experts and published medical research.

The key elements of the Foundation’s policy are:

• Indoor events: At any Foundation-sponsored indoor event or meeting, including gatherings such as chapter committee meetings, only one person with CF may be present and he or she will be designated in close consultation with event chairs and key event volunteers.
  
• Outdoor events: At Foundation-sponsored outdoor events or gatherings, people with CF need to maintain a distance of at least 6 feet from each other.
  
• B. cepacia: Under no circumstances shall individuals who have ever had a confirmed positive sputum culture for Burkholderia cepacia (B. cepacia)complex attend any Foundation events, meetings or offices.

“We understand that these changes may be difficult for many in our community,” said Robert J. Beall, Ph.D., president and CEO of the Foundation. “However, we want to be sure that we are doing all we can to reduce the risk of cross-infection among people with the disease. The health and well-being of people with CF is our top concern — it is at the heart of all we do.”

The Foundation is expanding its use of teleconferencing and live videocasts to help make it possible for people with CF to participate in indoor Foundation events and meetings and is exploring other new technologies to engage people with CF in all of its activities.

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I'm not quite sure how I feel about this. On one hand, I understand. It's to keep us healthy and from spreading our germs/bacteria to other CFers...but at what point to we have to put ourselves in a bubble? What about when I go to my CF clinic appointments, how are they going to seclude us in the waiting room? And I've even seen that at some Great Strides events (even though they're outdoors) CFers have had to wear a lei to identify themselves as having CF. Are all CF fundraising events going to be like this now? What about the black tie events and indoor things throughout the year where several CF patients were able to speak and tell about their experiences? It's tricky when we're trying to live as normal as possible, but yet we can't because we can't be around each other and everywhere we go we have to identify as a CFer. I'm not just a CF patient. I'm a daughter, sister, wife, aunt, teacher, and friend, too.

All I have to say is thank goodness  for social media! I'm very thankful to have things like Facebook, CysticLife, CFLiving.com, blogs, etc to connect with other CFers. When you're going through something, and you feel like no one else understands, what do you want to do? You want to talk to someone who's going through the same thing as you; you don't want to feel like you're completely alone in all of this and that's what Facebook, CysticLife, CFLiving, blogging, and forums have been able to do for me and many, many other cysters, fibros and parents of CFers. Although this is discouraging, we can't let it define us! We have to keep our relationships strong exactly how we've been doing it. It's so important now to spread the word about these amazing websites and forums for CFers to connect. 

Anyone want to buy me a webcam so I can keep in touch (and see) my cysters & fibros since I'm not allowed to see them unless we're yelling, outdoors, six feet away?! ;-)