Cystic Fibrosis Awareness Month of Blogs

May is Cystic Fibrosis Awareness month, and I found this awesome picture when I searched "Cystic Fibrosis Awarenss" in Google images the other day. I think it's perfect for me to get back into blogging and I think it'll be interesting to share my story with my readers. Stay tuned, starting tomorrow I'll be posting daily blogs about my life with Cystic Fibrosis, each day is a different topic. If you're a blogger and are doing the same thing, please share a link to your blog in my comments section -- I'd love to read yours also! :-)

Clinic Visit

I had my quarterly clinic visit today, which kind of crept up on me this time because Tim and I have been so busy lately. Usually I'm really good about planning ahead with questions, but this time I just showed up! I haven't been feeling the greatest this week. I woke up Saturday with a sore throat and post nasal drip (my first sign of a cold). It's slowly made it's way through my sinuses and now it's in the naggy cough & into my chest stage. I've even noticed that my voice is pretty hoarse tonight -- that could be a combination of hours of singing in the car (to and from Chicago) and coughing!

The past few months I've backed off of exercise, pretty much entirely, because I have been trying to focus on gaining weight. Even though I haven't been running or doing the workout videos, but lungs have been feeling very well since my last appointment...up until this week, of course! I always hate when I'm sick for clinic visits because I feel like it's not a true reflection of how I really have been feeling. I hate seeing low (for me) PFT numbers just because I have a cold. And that's exactly what happened at my appointment today.

As soon as I got into a room, I had one nurse taking my vitals and the other setting up the PFT machine -- they never move this quickly. Oh, and before I got my room, they weighed me in the hall and I was a whopping 109 lbs...still! That means no weight gain since January, but at least I haven't lost anymore! Anyway, once they did my blood pressure, O2 level, and temperature, the guy was ready with the PFT machine. He handed me the mouth piece and told me to start, but didn't give me nose clips. When I asked for them, he said they don't use them anymore - I was totally thrown off, I've never done a PFT without nose clips before! Haha! Either way, I started and as soon as I was on my first inhale, he told me to take a deep breath in. I was caught off guard because I wasn't preparing for it, but I did it anyway. My first FEV1 came out at a 74! Yikes!!! My chest is feeling pretty tight, but I was really bummed to see that low of a number. So I coughed my brains out for a few minutes and while the guy was sitting at the computer, he told me to start whenever I was ready. I said, "Well, I'm ready when you are!" He just told me to start breathing and was not really paying attention - it was quite annoying. This time, my FEV1 was 78 - better, but definitely not where I wanted it to be. As I was coughing from the second test, the nurse took the mouth piece away and I asked if I could do it a third time, he said, "No, this is good enough." Again, I was annoyed. I know that I've done this test a million times in my life so maybe he thought I didn't need to be coached, but to me, it makes so much of a difference when the person is actually paying attention and encouraging me! I'm not blaming him for my low PFTs - I know that my lungs are not feeling well right now and that my numbers probably wouldn't be any higher if I did the test three more times, but I was frustrated that he didn't seem to care.

Anyway, after that was over, I met with the dietitian I met her for the first time last visit, and she's wonderful. She remembered everything we talked about last time (even if she just looked over my chart before she walked in the room - at least she showed interest!) and asked how things were going. I voiced my concerns about still have absorption issues and we came to the conclusion to try adding a probiotic to my daily regimen to see if that helps. She also told me to continue to eat as much as I have been. She said I'm doing everything right, it's just not working yet.
Then she told me that one of my vitamin levels (Vit D) is actually high!!! I've had low vitamin levels as a child and transitioning into the adult clinic, so my doctor up'd my vitamin intake a lot over the past few years! It's finally paid off! I can cut back on the amount of Calcuim + D vitamins I'm taking. :)
We also discussed my lack of exercise. I explained that I stopped running because I felt like it was a major factor in my recent weight loss, but the dietitian explained that I should still really try to exercise as much as I can because it's still very good for my heart and lungs, but just make sure to replace the burned calories as soon as I'm done. Looks like I'll be picking up my running again - which, I'll admit, I've definitely missed!

Finally, I saw my doctor. She, too, was actually just getting over a cold, so she understood how I was feeling. Before I could even say anything about my FEV1, she asked how involved the nurse was. I told her that he wasn't really paying attention and apparently I wasn't the only one of the day to complain. Fortunately, my doctor was actually pleased with my PFTs today. She said that my graph still looks great and symmetrical to my last PFTs, and that my lungs are doing very well considering how I feel. I was glad to hear that she wasn't concerned. She's not too worried about my weight either. It's something that we're working on. She agreed that the probiotic should help and that I need to keep up my calorie consumption.

So just a few minor changes from today's appointment: Cut back on Calcuim + D, add Probiotic daily, increase exercise and continue consuming around 3,000 calories a day. I'm really hoping this combination will be successful for my weight and lung function!

These are my PFT graphs from January 2013

These are my graphs from today - I notice a big difference in the
bottom (don't know that that's for), but the angle of the
top is very similar to the Jan. ones which is great.

Positive Thoughts Thursday

Sometimes I feel like I use this blog to vent/complain about things going on in my life, and I don't want to continue with all of that negativity. So each week I'm compiling a list of positive, happy, lucky, fortunate things that are going on in my life or anywhere around the world.

• I'm thankful that Tim & I are still renting our house (in case there was any damage) and that we are not affected by this crazy amount of rain and flooding going on throughout the Midwest.
• A few weeks ago I wrote about how a pregnant cat wandered onto Tim's dad's property. Well this morning she had 6 little kittens! I'm so excited that we'll be able to have a little kitten this summer. I think I'm calling 'dibs' on the brown, black & white one. :-)
• Next week's Thursday post may come on Friday due to my next CF clinic appointment being on Thursday and then we're having a Spring Carnival for our school Thursday evening -- that's going to be a long, busy day!
• This isn't really a positive thought, but I wanted to share this again since I didn't get any responses last time: If you could as an adult CFer any question about their life, what would it be?

3rd Annual DeKalb Great Strides

As I have been posting for several weeks now, this past Saturday was my first Great Strides walk of the season. I was really looking forward to this one because for the past two years I've been very involved with the planning and organization, and this year I was able to just be a guest. I'm not going to lie, I was a little sad that someone else planned "my" walk this year, but there would have been no way for me to do it living three hours away. Overall, I felt we had a pretty good turn out...considering the wind chill was about 30 degrees and there were a little bit of flurries the night before and the morning of the event. Here are some pictures from the walk:

Everyone bundled up

And we're off!

NIU Drumline pumping everyone up as they walked
through the balloon arch to start :)

Part of Colleen's Cortland Crew! Smiling despite being freezing! :-)

The coldest part of the route! Nothing to block the wind.
If you enlarge the picture, you can see how many people are
walking ahead on the sidewalk!

Raffle prizes - $1 for 1 ticket, $5 for 6, or $10 for a wingspan
I chose a wingspan of my giant friend and got 41 tickets....still didn't win anything though!
Oh well, it's for a good cause, right?!

Most of Colleen's Cortland Crew! :-)

As of Friday, the day before the walk, the walk site had raised almost $15,000. The goal this year was $37,000....I really hope the weather didn't impact the donations that may have been turned in that day! As soon as I know the grand total I'll be sure to update.

A huge THANK YOU to all of my friends who braved the cold & wind to show your support for me and all others with Cystic Fibrosis! Your dedication means SO much to me!!!

Positive Thoughts Thursday

Sometimes I feel like I use this blog to vent/complain about things going on in my life, and I don't want to continue with all of that negativity. So each week I'm compiling a list of positive, happy, lucky, fortunate things that are going on in my life or anywhere around the world.

• I can't believe I didn't post this when I first heard about it! Another wonderful advancement in CF treatment! It's a powder inhaled form of the antibiotic TOBI (which I nebulize every other month) -- I might have to bring this up with my CF doctor at my next clinic visit.
• Tim and I took part in something this weekend that's very meaningful to me and I cannot wait to share it with you. It'll be shared this summer.
• One of my students called me "the funniest teacher" today! It made me smile. :-)
• I know I've been sharing this one a lot, but I'm very excited. My first Great Strides event of the year is on Saturday! 

Positive Thoughts Thursday

Sometimes I feel like I use this blog to vent/complain about things going on in my life, and I don't want to continue with all of that negativity. So each week I'm compiling a list of positive, happy, lucky, fortunate things that are going on in my life or anywhere around the world.

• This week the weather has been progressively getting warmer! I am not a fan of the cold or the hot, but warm is right up my alley! I'm loving the warm sunshine and that it's staying light much later. 
• There are only 37 school days left this year! I cannot believe it!! This school year has FLOWN by so quickly and it's been so much fun. This is the first year I don't really have any concrete summer plans, and I'm actually looking forward to being able to pretty much do whatever I want all summer.
• Next weekend is my first Great Strides event of the year and I'm really looking forward to it! So far my team has raised $195!
• I'm happy to have such great communication with my husband. I love how open and honest we are with each other. I feel like we are very good at compromising and working together at everything. I cannot imagine it being any other way. He makes me so happy. :-)

Kind of off topic, but please read my previous blog post and comment, comment, comment. I saw a great question from CysticLife and I think it'll spark some great blogging ideas for me (especially this summer!).

Questions For CFers

I feel like I've been slacking lately and I'd like to apologize. I saw this question on the CysticLife Facebook page and thought it could help me out: If you could ask an adult CFer any question about their life, what would it be? 
I'd love to get some ideas -- might help me be a better blogger this year. Stay tuned...there are things happening, but they're either private, not set in stone yet, or I'm not allowed to share. NO BABY, sorry - No spreading rumors!