29 Years

I've now been on this earth for 29 whole years. I'm sure when I was born, I wasn't "supposed to" live this long....take that CF! Right now, the median life expectancy for someone with CF is about 40. Better live up these last eleven years....kidding! I plan to surpass that "limit" too. It's weird to think that next year I'll be 30. I thought we'd be done having kids by now and just spend the rest of our lives raising them, but obviously that's not the way things are going, and that's okay!

I'm very lucky and thankful to be as healthy as I am today. Ten years ago I never imagined I would be where I am today. I thankful to have Kalydeco to help keep me stable so that I am able to raise a family, work full time and live a full life. So, for the next year, I plan to be 100% compliant with my treatments. I want my last year in my twenties to be a positive push in the direction of my health. I'd really like to start regularly exercising, but that one is always harder for me for some reason. One step at a time, back on track with 100% compliance (although, I'd say I've probably been around 90-95% lately).

Thanks to everyone who went out of their way to tell me happy birthday today - you sure know how to make a girl feel loved. Anna and I spent the day with Tim's grandma while Tim was at work. We went to a baseball game last night with his sister, her husband and their two boys. After the game we were able to see an excellent nearby firework show. Since we were going to get back late, it was smarter for us to stay in town for the night. Today we had a nice, relaxing day, and then a long crabby evening from all three of us! We're all exhausted and worn out, but I wouldn't have it any other way....well, maybe without the two hour meltdown from the almost three year old!

Love my life. Love my family. Here's to another healthy, happy year. :-)

#CFMama

Growing up with a mom with CF, Anna doesn't think twice about me doing my treatments throughout the day, or when we go somewhere for the weekend, and I love that. Sure, one day she'll realize that not all moms do a Vest or many nebulizers a day, and she'll have questions and may even be embarrassed, but I am prepared to be open and honest with her. But for right now, I am going to cherish her sweet innocence, and company, while I do my treatments every day (even if she does get in the garbage or throw my medicine vials all over the floor).

Anytime Anna is home or awake when I'm doing my treatments, she always has to come check in with me.

It may be for a quick minute to read a book next to me or what silly stuff she's up to:

 

It may be to climb on anything and everything in our hodgepodge office:

Or it may be to sit, shake or do medicine with me:

 

She was saying "ahhh" listening to her voice vibrate

Mommy always has the better medicine ;)

Even when she's playing, I know she's watching me because as soon as I'm done, she'll want to get in my chair and do what mommy's doing.

Just taking a little puff of Dulera

Anna pointed to the chair and said "up". When I sat her in the chair,
she tried to pull the Vest onto herself. After getting it on, she grabbed my
Cayston neb and put it in her mouth so proudly :)

Having a CF mom isn't always going to be easy, but I hope that in her seeing me do my treatments day in and day out it'll teaching her determination, respect for her body, and to see how much I will do to keep myself healthy to be the best mom for her.

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

The Compliance Streak Ends

I am so bummed to have to be writing this, but I know it's not the end of the world. Tim and I did some traveling out of town this weekend to visit our friends and also to attend our friends' wedding. As usual, I packed up my extra two bags with my treatment equipment, but I forgot my albuterol and HTS vials! Ugh! Of course I didn't realize it until Saturday night when I went to do my evening treatment session. So I did my 30 minutes of Vest with just Pulmozyme and then my Cayston.

Since I know my treatments aren't as effective without my nebulizers (and especially with my growing belly), I decided to just leave my Vest in the car and enjoy a day and a half treatment-free (minus Cayston, I did that three times a day). I felt like I deserved a break since I hadn't skipped any Vest or nebs in 448 days and I'd been feeling so well lately. My mucus production has really slowed down and I've felt like my airways have been very clear for a while now. Wow....what a difference missing 3-4 treatments makes!!!

This morning I woke up feeling a little crackly and had a throat-clearing cough. Now as I sit here, back at home, strapped to my Vest and just finished my albuterol, I'm coughing up more than I have in weeks (which still isn't a ton, but it feels good to get it out). It sounds silly, but I guess I just forgot how important and effective consistent, daily treatments really are! As much as I grumble about not wanting to do my treatments all the time, I couldn't wait to get home to get strapped in my Vest with albuterol flooding my airways. So I'll be resetting my compliance count tomorrow and hope to continue it for the next twelve weeks til our little lady is born.

I really feel like this was a happy accident because it brought me back to reality for a couple days. It made me realize how lucky I am to have all of these medications available to me and how much my lungs really rely on them. I hope that I'm able to keep this in my mind when I'm a new sleep-deprived mother because I know it's going to be a decision between sleep and treatments sometimes. It's not going to help anyone if I'm not healthy. So I'm going to try my best to do at least one treatment a day when she arrives because I want to be the healthiest mom I can be. :-)

410 Days!

 

Today is the 410th day in a row that I have completed all of my treatments and not skipped any medications! It's taken me three tries to get this far and I don't plan on stopping any time soon!! I'm doing this for my husband and our Baby Girl on the way! Take that, CF! You've got nothing on me!!

100% Compliance!

TODAY MARKS ONE YEAR OF 100% COMPLIANCE WITH ALL OF MY TREATMENTS!!!!

I am so proud of myself for finally achieving this goal, especially after getting so close last year! It has not been easy, but completely worth it. I plan on continuing this streak for as long as possible! I'm even more excited to be able to post this while I'm pregnant because that was my entire motivation for this goal! I want to be as healthy as possible so I can be around for many, many years with our child. Thank you to all of those who have encouraged me (and made me), and sat with me while doing my treatments when we were hanging out this year, even if I didn't want to. An hour a day for treatments is adding weeks, months and years to my health, which is more time I can spend with all of our family & friends! This next year might be a bit more challenging, especially come August, but I will do my absolute best to keep up with my treatments for another year!!

3:30am

It is currently 3:32am and I just started a treatment. Why? You might ask...because I woke up around 3:00am with this nagging cough that wouldn't go away, which is not typical for me in the middle of the night. So I tried changing my sleeping position, coughing it out, sitting up for a while...anything to avoid having to get up out of bed to get a drink. So while I was laying there trying to think about why I have this annoying cough that won't go away, it hit me - I FORGOT TO DO MY EVENING TREATMENT! I did my normal morning treatment, then later I did a mid-day treatment and was planning on doing my evening one a little later than usual because I threw that extra one in there. But Tim and I went out to dinner and by the time we got home, we sat on the couch and watched Ozzie go nuts play for a while and then both went to bed...I completely forgot about it! I don't remember the last time I forgot to do a treatment! So, of course I got up and I'm doing it right now! I can't throw away 130-something days of compliance! Plus, it's exactly what I needed to get rid of my cough (well this and a little sip of Gatorade).

I just really hope I'm able to go back to sleep at 4am when I'm done...

Summer Schedule?

Woo hoo! No school! Summer break! I can do whatever I want for the next 2 1/2 months! True...but honestly I'm struggling without a routine/schedule. It's so easy for me to lay around all day watching TV without keeping track of time and how much I may or may not have eaten throughout the day. Currently, I'm really trying to gain weight and keep my lungs as healthy as possible, so to keep that up this summer, I've decided to make myself a daily schedule. It's nothing set in stone, there are no times attached to each thing, but there are certain things I need to accomplish each day - this is what I've come up with so far.

• TREATMENTS
• EAT (breakfast)
• 30 MINUTES EXERCISE
• Shower
• EAT (snack)
• Run any errands for the day
• TREATMENTS
• Housework 
• EAT (lunch)
• TV/read/etc
• EAT (snack)
• Hang out with Tim
• EAT (dinner)
• TREATMENTS
• EAT (dessert)

*I'm going to try to fit an extra treatment in the middle of the day - why not, especially if I'm sitting at home all day. 

*I'm going to try to get at least 30 minutes of exercise in everyday - whether its just walking around the neighborhood, going for a run, doing a workout video, something...anything!

*I'm really trying to eat/snack all day long. Sounds glamorous, it's not. I stocked up on protein bars on Monday to help me with snacks throughout the day.

*Now if I have plans for the day, then I'll just make sure that I get in my two required treatments a day and eat as much as possible. This schedule is for my lazy, nothing to do, days...which will probably be a lot of days this summer! :-)

*I tried this yesterday for the first time and did pretty well. I got in three treatments, 35 minutes of walking & running and ate several snacks on top of breakfast, lunch and dinner. It also gave me something to look forward to when I got out of bed. I knew that I had to do my treatments, but I was also mentally prepared to get outside and walk/run around the neighborhood. I like having a plan/schedule/routine. I don't do well with the 'unknown' as much. I think this is really going to help me make the most of this summer! :)

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.

CF Awareness Month Blog #8 - Non Compliance

I feel like I could write a book on this topic...since I was non-compliant for the first 20 years of my life! I'm very proud to say that streak has ended and I'm finally on the right track with taking care of my body/health.

As I child, I was not taught the importance of my treatments (then it was mostly nebulizers and manual chest percussions because the Vest was not made). In middle school, when the Vest came out, I felt like I was diagnosed with CF for the first time because it was the first time that daily treatments were "forced" (as I felt) upon me. I didn't understand why all of a sudden I had to start doing all of this stuff when I didn't even feel sick. And I hated that the treatments made me cough because then that made me feel even less 'normal' like I had been for the past 13-14 years.

It was a constant fight between my parents and I throughout middle school and high school. I came up with every excuse in the book: "I just ate and it hurts my stomach; I'm tired; I have homework; they don't even do anything for me; I want to go hang out with my friends"...I was very rebellious against doing my treatments because I did not want that to become my 'normal' or part of my routine. I did not want to accept CF as a regular part of my life - I wasn't ready.

What I didn't realize then, that I do now, was that I could have been making myself even healthier and feeling better than I was! But I feel like every person Cystic Fibrosis needs to learn this on their own. Sure they're going to hear it from their doctor, but it's something they need to realize on their own time. From my experience, it seems like a lot of CF teens go through a similar stage that I went through, and I'm sure our parents were scared out of their minds because we're not taking care of ourselves. But if it takes seeing their PFTs going down, or maybe as extreme as a hospital stay to get that wake up call, then sometimes we need to realize this on our own to then take ownership of our health.

Turns out that I wasn't ready to take complete ownership of my disease until I met someone I wanted to spend the rest of my life with. I didn't want Tim to have a sick girlfriend in college. I didn't want him to be embarrassed by me, and I didn't want to hold us back from doing normal things together because I was sick. Being with Tim in college was (and is still) my motivation to keep myself healthy. I want to be around for/with him for as long as possible. What kind of wife would I be for him if I neglected my health?

So if you're a cyster or fibro who's struggling with your treatments, my advice to you is find your motivation. What do you want to do with your life? Will you be able to do that if you're not healthy? Set goals for yourself - start small, but setting goals was a huge part of how I became so compliant. And start now. There's no point in saying, I'll start doing all of my treatments next week -- do it now. It's not easy, but it is possible! NO excuses and don't give up!!!

Annoyed!

I feel like all forces are against me right now in completing an entire year of treatments!!!! I am VERY annoyed and disappointed to have to announce that I've had to miss/modify my treatments over the last couple of days because I ran out of meds! I know, I know, how can I run out of meds? It seems so irresponsible, but I have the pharmacy company and the lovely snow to thank for this one.

They won't let me refill my meds too early, and they're really good about sending me reminder emails when I'm due for my refills. I noticed that I was getting low on my Hypertonic Saline (HTS) and Pulmozyme so I went onto their website to get my refills. Also, I've been off Tobi this month, so I'm scheduled to be on it in March, so I added that to my list of meds I needed refilled. Typically when I submit a refill, I receive it in the mail about 2 days later. Well this time, I got a confirmation email from the pharmacy saying that I will not recieve my medications until Tuesday (5 days later!) because they weren't sending express orders due to the "inclement weather conditions". So this meant that I was going to run out of Pulmozyme and HTS before my meds arrived! Damn it!!! Over the weekend, I modified my treatments however I could to ration out the rest of my nebulizers til yesterday.

Well, yesterday when I got home from work, there was still no medication! It was too late to call, so I just figured it would just be another day, so I didn't bother emailing. I got an email this morning saying that my order is still delayed because they are waiting on prior authorization on my TOBI! AHHHH! I'm currently emailing them back and forth begging them to send me my medication tomorrow! Well, it looks like it won't get here until Friday. I'm so annoyed! I was about ONE WEEK away from my one year streak!

I'm not really bothered by the fact that I'll miss a couple treatments (I'll still do my Vest and Albuterol) -- that's not going to have a huge impact on my lungs. I'm more annoyed, if you can't tell, that I have to re-set my counter again!!!! I know it's not the end of the world and that I've been super compliant with my treatments since July of 2011 (I missed a couple in March of 2012 and now this mess), and it's made a great improvement on my overall health, but it's just the fact that I can't cross it off of my list! Guess it looks like I'll be starting all over, AGAIN, whenever they decide to send me my stuff.

Finally, I just wanted to apologize for not blogging very much lately. I feel like there hasn't been much going on that's blog-worthy, but at the same time, I feel like I've been super busy. I've got another "kinder quotes" in the making, so hopefully I'll be able to post that soon. :)

It's Been 5 Months

...since my last dose of Cipro, and I might have to start it up again. Darn, adorable, gross kindergarteners spreading their germs! :) It was bound to happen sooner or later, so I'm not surprised.
Last post I shared about my flu shot, and I'm happy to report that I didn't have any kind of reaction to it which I was happy about. But around Tuesday/Wednesday I was having a ton of post nasal drip and the back of my throat was getting very sore. I couldn't tell if it was just allergies or if it was the start of a cold, so I just tried to get as much of it out as possible. Then yesterday it started to work its way into my sinuses and today I've been sneezing and blowing my nose all day - I've also got a lot of sinus pressure.
This morning I decided to email my doctor and nurse to see if they could call in a 14 script for Cipro because I wanted to catch this before it went into my chest and became any worse. Well, I just got off the phone with my doctor a little bit ago, and she thinks that it could possibly be viral (since that seems to be going around right now) -- which means the Cipro really wouldn't do much. So I'm going to wait it out over the next day or two to see if it gets any worse or starts to move into my chest. If it does, she wants me to start my two weeks of Cipro and also to pair it with a month of Tobi. She also told me to increase my airway clearance to 3-4 times a day to try to get rid of whatever it is...ugh!
I know I've been so complaint with my treatments over the past year, but I hate increasing my treatments! I'm really good about getting in my treatments twice a day, but that doesn't mean I enjoy doing them or that I don't ever stall to do them each day. So now that I have to do three-four a day, that just drives me crazy. But I'm going to do my best to try to keep up with the extra treatments, especially because I have a three day weekend so I should have the time. I'd love to kick this cold or whatever it is out of my body without having to go on Cipro because I don't want to build up any resistance to it. I used to go on Cipro maybe once a year, and this would be my third dose this year, so lets hope I can get rid of it on my own with increased treatments. :-)

NOOOO!!!

I am very sad (and mad, and disappointed) to report that I have to reset my compliance count. :-( This weekend Tim and I went out of town to celebrate his grandma's birthday and his great-grandma's 98th birthday!! We carpooled with Tim's aunt and uncle, so when I saw them in our driveway Saturday morning, I grabbed all of my things (about 3 different bags - one for Vest, one for clothes, the other for nebs) which I had all packed up and ready to go, and we were on our merry way. It wasn't until Saturday evening when I went to do my second treatment for the day, I realized I left most of my nebulizers and viles on the table - still drying from my morning treatment!! AHHHH!!! I was so MAD!  All I had with me was my Pulmozyme for that evening, but no Albuterol for that treatment and the morning one, and no Hypertonic Saline for my Sunday morning treatment. I did my Vest for thirty minutes like I usually do, that evening and Sunday morning, but it definitely wasn't as productive without my nebs.
When we got back last night, I did my regular round of treatments with all of my nebs, but I'm resetting the count for today since this is the first full day that I'm back to doing everything. I made it 215 days without missing a single Vest or nebulizer treatment, except in January when I had my little bought of coughing up blood and I was ordered by my doctor to stop treatments to give my lungs a break. I know it's not that big of a deal health-wise because it's not like I missed them for an entire week, but it just kills me that 215 days of hard work can be thrown away by three little nebulized viles and two nebulizers that got left sitting out. Of course, now my goal again, is to make it another year without missing anything!! - unless directed by my doctor.

Our new team shirts this year!

In other news, the weekend was great! We were able to see a lot of family, I passed out most of my Great Strides team shirts and ate a lot of food! :-) I'm really looking forward to this year's Great Strides walk in our town because it's only the second one out here, but it looks like it's going to definitely be bigger than last year! I've got a ton of people from my work registered, I'm working on getting the community involved more, and we're planning on doing a school-wide fundraiser at my work the week leading up to the walk! I'm very excited at the progress we're making and I really hope we meet our goal of $25,000 this year! If you'd like to make a donation to my team (Colleen's Friends & Family) please click on our team name - no amount is too little. The other day I was cleaning my nebs and refilling my vitamin/pill organizer and I realized how much 'equipment' and pill bottles I have everywhere, so of course, I took a picture of some of it.

THIS is the reason your donations are so important to me

This picture includes my nebulizer pieces, all vitamin, pill and medicine bottles and my Eflow pieces. It does not include, my Vest, nebulizer machine, Eflow machine, and all of my nebulizer viles. All of this stuff is so normal to me, I sometimes forget that other people don't have this stuff all over their houses too. I have all of my medications in the bathroom in containers, my nebulizers and pieces in the kitchen and on the kitchen table (to dry), my pill organizer and enzyme bottle always out on my kitchen counter, and my Vest and nebulizer machies always plugged in and ready to go at my desk. There's not a day, or really an hour, that goes by where I'm not physically reminded by my CF by something laying around the house, let alone taking my enzymes and/or coughing.
I cannot wait for the day when CF stands for Cure Found and future generations will not have this as their 'normal'. I am in no way trying to complain about the things I do daily to keep myself healthy, again because it is what I am used to. But for those who don't have CF, or are never around it, this is what it looks like. This is why it is so important to me (and for me) to have people make donations to the Cystic Fibrosis Foundation & Great Strides. I would not be alive today if I didn't have all of these medications available to me. These medications would not be available/created if it wasn't for the money donated for research. So thank you to anyone who's ever donated to CFF because you're helping to keep me alive! :-) Please consider making a small donation to my Great Strides Team Page to support the CF Foundation in helping make CF stand for Cure Found!

Finally, this Thursday I have my next CF clinic appointment where we'll be thoroughly discussing Kalydeco as an option for me -- another amazing creation from the donations of people like you! :-)

Go Me, again! (And Other Things)

I'm sorry, but I have to brag again about my awesome trip to the gym today. I stalled for as long as I could this morning to go because I hadn't been there since last Wednesday, so I thought it was going to be really tough. I stuck to my normal routine - run a mile on the treadmill, then do 10-15 minutes on the elliptical - except this time I ran a mile and a half on the treadmill without stopping!! I know this may not seem like much, but on November 15th, I ran a whole mile straight without stopping, and since then, I've been making myself run a mile each time, but lately I've been wanting to go farther but always chickened out and stopped at exactly a mile.

Today the first 1/2 mile was kind of rough and I almost went to a walk early, but I pushed myself, a mile came and went and my legs weren't even hurting and I was breathing pretty well. I was at about 12:00 minutes of running at this point, so I set a goal to keep running while I finished the song "If I Die Young" by The Band Perry. Well, that song finished and I was still going! I was at about 1.35 miles, so I pushed myself to keep going to 1.5 miles and I did it! (It took me about 17 minutes.) Now that I know I can do it, that will definitely be my goal each time I go back to the gym! My ultimate goal is to be able to participate in a 5K (3.1 miles) sometime in the spring, summer, and/or fall - whenever there's a local one. Today I completed about half of a 5K on the treadmill, so I know that if I keep going, I can do it!

In other news, I am at 149 days of compliance with my Vest and nebs! It was hard to keep up with all of my treatments this weekend with the holidays and so much traveling, but I did it. From Thursday morning to Sunday night, Tim and I put over 700 miles on my car, but it was all very well worth it. We literally drove the entire state of Illinois, from near St. Louis to Chicago but we were able to visit so much family. Tim's oldest sister had her first baby (our second nephew), Isaac, on December 13th, so we were able to visit them on Friday, when he was only 10 days old - adorable!! 

We were also able to spend a lot of time with Tim's other sister, her husband and their son who's now a year and a half old already - also very adorable and funny! We saw everyone on Tim's side of the family Friday and Saturday, then on Sunday (Christmas Day) we traveled up to my parents house where we opened gifts with my parents and two brothers. Then we spent some time with our good friend Chris and his family for a little while, then hit our last party of the weekend with my mom's entire side of family where my cousin's twin boys (a year and a 1/2 old) kept us all entertained.

Luckily Tim and I both had Monday off (I'm off all week) because we literally spent the day being lazy - it was wonderful! This week I'm home doing some cleaning, organizing, rearranging, and unfortunately taking down some of the Christmas decorations. I'm hoping to see a couple of my friends before having to go back to work next week. I'm also hoping to clear out some room for this awesome bench Tim's dad built for us.

Click on the pictures to enlarge them

100 and 5th

Today marks the 100th day in a row that I've done my vest (twice a day) and all of my nebulizers!!! Today also marks the fifth week that I've gone to the gym, two days a week! I am very proud of myself to reach these accomplishments, but I really look forward to continuing and making those numbers larger. I never thought the day would come where I'd say that I've done all of my treatments for over three months straight! I am also looking forward to my next CF clinic appointment which is December 23rd to see where my PFTs are at. My last clinic appointment was in August, and I was at 100% compliance for about three weeks at that point, so my PFTs weren't as great as I wanted them to be - even though they did go up a tad. I really hope that they have skyrocketed by the time I get tested in December.
A year ago, if you would have asked me how I would physically feel after being compliant with my vest/nebs for 100 days, I would have probably said something along the lines of having the best lung function I've had in a long time. Although I do feel great from doing all of my treatments, I don't think I felt much of a difference until I started going to the gym. I really feel like doing all of my treatments AND going to the gym has made me feel even better. I wish it hadn't taken me this long to figure this out!!! I've read it and heard it millions of times, but I was always too lazy to get up and exercise. I'm SO GLAD I finally pushed myself because I really feel like it's paying off with my lung function, and also my overall energy level.

So the moral of the story.... treatments + exercise = happy, healthy me!

 +

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A Day in the Life of Me

When I first started my blog in January I posted a blog called Day to Day where I talked about what it's like day to day having CF. I recently read a blog where a cyster broke down her daily schedule to show how much she does treatments. I really liked this idea, so I decided to dedicate this post to the same thing. This is what a typical (Monday-Friday) day looks like to me.

• 6:00am - Wake up (If I'm on my Tobi that month -which is another antibiotic neb- then I get up at 5:45am to each day to fit it into my routine.)
• 6:05 - 6:50 - Morning Treatments: 

                                      - 30 minutes of Vest (3-ten minute sessions)
                                      - Albuterol nebulizer (~7-8 minutes)
                                      - Hypertonic Saline neb (~10 minutes) -- Both nebs are done during the Vest time
                                      - Clean Albuterol and HTS nebs
                                      - TOBI - if 'on' that month (different neb cup & machine - Add 10 min to routine)
                                      - 1 puff of Advair
                                      - Clean TOBI neb

This is what I look like when I do my treatments. Nebs and
Vest going at the same time.

• 6:50 - Make lunch for the day
• 6:55 - Get dressed
• 7:10 - Take allergy medicine, Zithromycin (MWF anti-biotic), Zyrtec, and 4 enzymes then eat breakfast - which usually is a big bowl of cereal or oatmeal with a glass of milk. 
• 7:20 - Take the rest of my vitamins (~4-6) I can't take my vitamins before I eat otherwise I'll get nauseous

This is approximately how many pills I take each day. The left
hand has all of my vitamins, anti-biotics, allergy med, and Zyrtec.
My right hand has about the amount of digestive enzymes I take in one day.

• 7:25 - Brush teeth & hair, make sure I took all of my meds and did my Advair puff
• 7:30/7:35 - Leave for work - need to be there by 7:45
• 7:45-3:30 - WORK! (Mondays and Thursdays I stay later at work, so it pushes my evening stuff back)
• 4:00 - Come home, change clothes, wash hands, empty out lunch box, get PM nebs prepared
• 4:10 - 5:00 - PM treatments:

                                      - 30 minutes of Vest (3-ten minute sessions)
                                      - Albuterol neb (~7-8 minutes)
                                      - Pulmozyme neb (~7-8 minutes) -- Both nebs are done during the Vest time
                                      - Clean Albuterol and Pulmozyme nebs
                                      - TOBI - if 'on' that month (different neb cup & machine - Add 10 min to routine)
                                      - 1 puff of Advair
                                      - Clean TOBI neb

A = Albuterol, P = Pulmozyme

• 5:00 - 5:45 on Tuesdays and Thursdays: Go to the Gym for at least 30 minutes of exercise. 
• 5:45 - EAT (but not without taking my enzymes first!) I eat lunch at 10:30am at work, so by the time I'm done with all of my treatments after work, I'm starving. On days that I go to the gym, I usually eat a granola bar before I go to give myself a little energy boost.
• Shower - I usually take my showers after dinner (or when I get back from the gym) because I don't want to wake up any earlier in the morning, especially on TOBI months - 5:45 is early enough!

I really have found that if I do my second round of treatments right when I get home from work, I rarely skip them. It also motivates me to get them out of the way at that time, so I can spend the rest of the night hanging out with Tim.
Speaking of Tim, I've been strongly hinting towards him to write a post on his own, of what it's like to live with a wife with CF, or anything really that he can think of. If you'd be interested in reading a post (or two, or three, or however many I can convince him to) written from his perspective, please vote on the top right-hand side of my blog. Maybe if he sees that other people want/care to read it, then he'll do it. If you also have something you'd be interested in reading from his perspective, please feel free to leave a comment on this post and I'll make sure to relay the message to him. Thanks!
It's 5:00 and it's Tuesday = Time to go to the gym! This is my fourth week going and I've been going twice each week, yay!

Hodge-podge

This blog is going to be a little bit about a few of things I have on my mind currently - some will be a little bit of venting (sorry in advance) and some will be a little update on recent events, and whatever else I can think of.

First of all is my little (might be bigger than expected) venting session. Now, if you're a fairly new reader you might not be caught up on my hatred for smoking, so if you'd like to read about it you can go here. We have also faced a similar situation to which I'm about to explain and you can read about that here which makes me even more annoyed that I'm having to deal with this AGAIN, that was the whole reason we moved in the first place! Today I got home from school (work) and it smelled like not cigarette smoke in our apartment - it was the first thing I noticed. Now, I HATE the smell of cigarette smoke and I HATE even more the hate of this kind of smoke!! I kind of had a rough day at work, then I had to stay late (which was fine), then I had to go run a couple errands after work, so I was already kind of annoyed and tired, then I got home and smelled this and I was furious. (Sorry, Tim! He had to listen to all of my complaining.) I immediately went downstairs to talk to our neighbors.
For those of you who don't know, we live in the upstairs of a house and there are two guys that live on the main level. They've been fine so far (although I have smelled this before, but not this bad, and I've let it slide because we've always had the windows open), very nice and quiet. But now that we have the heat on and the windows closed, the smell was very strong. I knocked on their back door and a few seconds later one of the guys answered the door and I said, "If you're going to smoke, you need to do it outside." He said, "Okay." And then I said, "Because I can smell it coming up through our heat and it's going to be a major problem." He nodded his head and said okay. I went upstairs and opened the windows and turned off the heat to try to get rid of the smell. It doesn't seem too bad anymore, but I can't tell if I'm just used to it, or if it's going away. Hopefully I won't smell like it tomorrow when I leave the house - I don't think it was that strong for long enough to make everything smell bad. But, if I do smell it again, I will be calling the landlord (a good friend of mine's mom) to have her do something about it. They're lucky I'm not a b***h - I really could have called the police on them for something like that, but I wouldn't do that. I'm assuming they won't do it anymore. If they do, I'll tell them about my CF and why it's so important to do that OUTSIDE (or really not at all, but I'll keep that part to myself), but today I was too annoyed to tell them about it (plus I think he was in la-la land when I was talking to him). Now that I have that 'off my chest' I'll try not to be so crabby tonight.

Another thing I wanted to write about was the wonderful weekend we had! It was Tim's sister's baby shower this weekend, so myself, Tim, and Tim's aunt & uncle drove down about 4 1/2 hours to spend the weekend with her and our family. She's due in December with their first child, a little boy, who they'll be naming Isaac David. I'm very excited that we're going to have a second nephew! :-) She got lots of cool stuff for baby and we're all anxiously awaiting his arrival. I also got several comments about how when Tim and I have kids, we need to have a girl because there are too many boys in the family right now. :-)

Speaking of babies, I have to say CONGRATULATIONS to my fellow fibro (male w/ CF) Ronnie and his wife on their beautiful baby girl born this morning! I follow his blog which you can read here, and he also is the creator of my other favorite site CysticLife. Their daughter was born a couple weeks early, so she was a surprise to all of us on CysticLife who have been anticipating her arrival soon!

And finally, I wanted to clarify about my compliance lately with my treatments. Don't worry, I'm still at my record of 10 weeks, but it's been about 97.5% compliance. I have completed 100% of my Vest treatments and all nebulizers since July 31st. I have, unfortunately, missed a few puffs of my Advair and two or three days of vitamins. I know it may not sound like much missed, and it's really not, but I would love to be able to say that I haven't missed/forgotten anything since the end of July, but I am still very proud of myself for what I have accomplished. I was very tempted to skip my nighttime treatment on Saturday because I was so exhausted from our day's activities and we were staying in a hotel, but I forced myself to do it. I wasn't going to throw away 10 weeks of hard work and dedication to get to bed just a little earlier, especially when I dragged all of my crap along anyway. It is still possible to do treatments in a hotel:

Darn it!!! I just realized that I missed the first 30 minutes of my new favorite show, The Sing Off. And I said to Tim, "UGH, this is the worst day ever!!" It's really not, I'm being overly dramatic and I'm extremely hungry (which means crabby). I just need to eat and go to bed!

Ahhh....It's just one of those days...

Go Me!

Today was day number two for going to the gym! I know it's only day two, but I'm still proud of myself. I was exhausted after work today, but I made myself go because I knew that I wouldn't be able to go any other day this week because of plans/gym times. I found that the 30 minutes went by pretty quickly today while I was there and that I am pretty good at pushing myself to go a little bit further. For instance, I was running (more like jogging) on the treadmill and I set a goal to run for two minutes. Well, two minutes came around and I decided to keep going for another minute. I made it to three minutes and pushed myself to three minutes and thirty seconds. Now that might not sound like too much, but I was sweating my butt off and for it being my second day at the gym, I think that's pretty darn good!

I also noticed that while I'm there for the half hour, I really don't think about anything. It's a wonderful way to clear my head of the stressful (sometimes) day at work, and just focus on pushing myself and focus on my breathing. Yesterday I did my treatments before I went to the gym, and today since the gym was only open til 4:45, I went to the gym first, came home and took a shower, and I'm doing my treatments now. I felt like I was able to breathe a lot better and deeper yesterday when doing my treatments first. I was also able to cough and get everything out before exercising yesterday which I liked a lot better than today. Today while I was there, I had to cough a couple times, but I had no where to spit and I really hate when that happens. I'm glad that I tried both options (treatments first, then gym, and vice versa) because now I know which one feels a lot better to me.

This weekend's going to be pretty busy, so my main focus is going to be making sure that I don't skip any treatments to keep my streak alive. I'm at 9 1/2 weeks!!! GO ME!!!

CRAZY!

Sometimes this is how I feel!

This is the word I have used over and over to describe the past few weeks! My schedule has changed probably at least ten times and when it finally feels like we're getting into a routine of things, something else comes up! I never realized how much goes into setting a routine for a child, a classroom, and especially for a whole school. For those of you who don't work in the education field and have children in school, please be understanding and patient with teachers, at least, through the first month because it's crazy the amount of work that they do!

The class I'm in is made up of 28 students so it gets kind of hectic. Luckily the classroom teacher has years of experience and so much patience, and there are four assistants in the classroom to help also. All help is needed sometimes, but I think we're making progress. I know that I would definitely be struggling with this class if I was their teacher - especially first year! (I'm going to wait until the end of this week to see if I can get a few more 'kinder quotes', and then I'll post what I've got so far.)

As far as my health goes, I'm finally getting over my cold that I talked about a few posts ago. I decided not to go on antibiotics because I've been keeping up with my treatments so well, I think that helped me get it out on my own. Oh, and speaking of treatments, I have to brag a little bit here. This past weekend, we went camping with Tim's whole family, (I forgot my camera!!!) which we do every year and is always so fun, and this year I am very proud to say that I did all of my treatments while we were there - I only missed one puff of Advair! I'm really hoping that if I keep up with everything that I can maintain the lung function I had at my doctor appointment a month ago - I'm hoping I didn't decline after this little chest cold.

One thing I have definitely been having trouble with recently is exercising. I brought this up in my post a couple weeks ago also, and someone made a comment about how much I move around at work which I never thought about. I am constantly up and down off of the floor with the kids, crouching down to help them at their seats, chasing after them when they try to leave the playground or classroom (yes, this has happened a couple times), playing with them in PE and just walking with them in the hall wherever they go. I'm thinking about getting a pedometer to see how many steps I'm taking during the day because I know I'm definitely getting a work out when I'm at work, too. I would still like to keep up jogging/walking/Zumba whenever I get my energy back, but I'm so exhausted when I get home the past couple weeks, that I do my treatments, eat dinner, then just lay around for the most part until it's time for bed. I really wanted to be able to jog a mile without stopping for Out Run CF next weekend, but I haven't been running in over a week, so I'll just try my best. If anyone has suggestions about how to get back into it, I'm all ears. I'm going to try to get Tim to go on walks with me a couple times a week again to at least get some extra movement in the evenings.

I Survived!

I survived the first week of Kindergarten! I've definitely been keeping busy at work this last week helping with 28 little five and six year olds transition into Kindergarten. Let me tell you, it's exhausting...and I'm not even the classroom teacher! It's been a lot of fun and a huge learning experience for me. This is the first time this school has had full day Kindergarten, so it's an adjustment for all of us, especially the kids. (One of my students didn't understand the difference between snack and lunch, so that turned into a meltdown...) They are completely wiped by the end of the day, but still manage to have an extremely large amount of energy at the same time. We've had a few criers and I've been asked probably about 100 times this week if it was time to go home yet. But I think in a couple weeks the kids (and adults) will get settled into a routine and everything will calm down a little bit.

I've been going to bed by 9:00 every night this week, but I've still been able to keep up with all of my treatments. I'm at 6 weeks without missing a single treatment!!!! But unfortunately, I've been finding it very hard to get energy to exercise this week. Last weekend I did go for a mile walk/jog, but I haven't done much since. Right now I'm waking up at 6:00 to get in my morning treatment, breakfast, making lunch and getting ready, and I have to be at work by 7:45. I've been getting home usually by 4:00 (except two nights a week when I'm at school til 5:30) then I do my second treatment right away. I should go exercise after that, but I'm usually so hungry and tired, that I just want to eat dinner and then lounge for the rest of the night. I'm going to have to start pushing myself to get outside, while it's still nice out, and walk or jog.

I'm not going to be doing too much this weekend though, because unfortunately I am not feeling too well this morning. Yesterday at work I was sneezing like crazy all day, so I just assumed it was allergies. Then last night I was pretty stuffed up and still sneezing, so I took some Benadryl before bed hoping it would knock me out and that I'd feel fine in the morning....wrong! I tossed and turned all night and woke up just as stuffed as yesterday. I'm really hoping that if I take it easy this weekend, that it will pass and not turn into something more.
I really hope I haven't caught anything from the kids already!