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.

Out Run CF

Just want to send out a reminder to all of my readers about Out Run CF which is coming up in less than two weeks, on October 1st! It's not too late to register using the link below(although, you'll get your t-shirt after Oct 1st) and join in on the easiest 'race' for CF!  



The first Out Run CF Virtual Race was a huge success. Runners and walkers from all over the world came together with one thing in mind, to Out Run Cystic Fibrosis! This fall, on October 1, 2011, we plan to do it again. The Rock CF Foundation and CysticLife are joining forces, once again, to bring you another Out Run CF Virtual Race.

In case you missed out last time, or need a refresher, here is how it works. Anyone and everyone is invited to participate: Fibros, Cysters, parents, spouses, friends, extended family, you name it! Participants will find a route near their house. Then on October 1, 2011, EVERYONE will lace up their sneakers and hit the pavement in their Out Run CF shirt (Each registrant will receive a t-shirt unique to this fall’s race from us in the mail).

No distance is too long, or too short. YOU pick YOUR mileage. 1 mile? 5K? 10K? 10 miles? Half Marathon? Marathon? It’s up to you! Nothing is too fast or too slow YOU pick YOUR speed. We just want to get the entire CF community out of their houses and into their running shoes on the same day, for the same cause.

Registrants can blog about their training, ask questions, and share tips on CysticLife.org. We want the entire site to be plastered with talk of exercise, running, and encouragement. On race day, we want people to post their times and their experiences. Let’s make this Virtual Race even BIGGER than the first one! Let’s make it the biggest race the community, and the world, has ever seen!!

So here again are the hard facts:

Who: Everyone
What: Outrun CF Virtual Race held by Rock CF Foundation and CysticLife
When: October 1, 2011
Where: Anywhere
Why: Because anyone can run—whether it’s for a minute or a marathon! Together we can Out Run CF.
How : Register at http://www.active.com/running/anytown-mi/out-run-cfvirtual-run-fall-edition-2011

Helpful sites to get you started:

CysticLife.org—Blog about your progress, ask questions about training to the community, post Airwaves with your daily run updates, connect with others to encourage them and be encouraged

Dailymile.com—Make and account and join the Rock CF/CysticLife group to track your miles and keep track of others!

Facebook.com—Join the Out Run CF group to see how many people are outrunning CF and connect with them! 

Got Me Thinkin'

So, as many of you know, I work as a teaching assistant in an elementary school. Currently I'm working in a Kindergarten class with two special needs students. One of the students as a chromosomal deletion which affects his body in several different ways. This student also has sibling with the same chromosomal deletion. A teacher told me today that the boys' mom is a carrier of this deleted chromosome which made her pass it on to her children, and then she said, "Which means she knew that her kids were going to have this" - which immediately got me thinking about CF and my decision to have kids....
(By the way - this teacher who said this is a good friend of mine and knows that I have CF, and I'm sure she didn't make the correlation, so please don't comment anything negative towards her.)

It just got me thinking: Am I a bad person because I have CF and I want to have my own kids? What if I pass it onto them? Are their future teachers/educators going to look down on me for passing it on because I knew it was a possibility? I know the answers to these questions should be "no," but it's hard when they're constantly running through my mind. I was just thinking about the possibility that if/when we have children, I can pass CF onto them, and that I don't want people to think that I'm irresponsible or selfish for wanting my own kids. But then there's a part of me that thinks of this saying that we use in Kindergarten all the time, 'you get what you get, and you don't throw a fit'. I know that we shouldn't care what other people think or say, but sometimes I just do. It's this constant battle I mentally face when I think about the future. Drives me crazy sometimes!

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!

A Few Little Updates

How appropriate! Instead of Live, Laugh, Love
it's Live, Learn, Love! 

Well, I'm finally back to work as of Tuesday and it's been great being back. The kids don't start until next Tuesday, the 6th, so the past few days have just been with the staff getting things together. I am very happy to say that I will be working in Kindergarten again this year, half in the resource program and half in the special education program. This is kind of something new for me, so I'm definitely looking forward to it. I am going to be working with some wonderful people (staff) so I'm very excited about that, too. I've attended several workshops/seminars over the past few days that have gotten my 'educator brain' going again and it feels so great, I love it! I'm just looking forward to the kids starting and getting into the full swing of things again. Oh, and I'll definitely be keeping track of some awesome 'kinder quotes' again this year and posting them on here for your entertainment! :-)

As far as my clinical trial debate goes (see previous post), I finally emailed back Spring (the person in charge of the study) today. After talking to several people about my dilemma and getting lots of advice from people, I've decided that I really want to participate in the study, but I really don't want to take eight days off of work. It's not good for the kids, for the classroom teacher, or for me if I'm trying to get a job working in that school district. Someone suggested seeing if I could put off the study until next summer so that I wouldn't have to take any days off work - genius! So when I emailed Spring today, I asked if we could start the study in spring (haha), preferably around May. This way I'm not waiting an extra month til June when school is officially out, but by that time of the school year everyone's usually a little burnt out, so a day or two off before the end of the year isn't always a bad thing. I'm hoping that it's not too long of a wait to start because like I said, I really want to help out the CF community by doing this trial. I will update on here as soon as I hear something from Spring, so keep your fingers crossed that they are awesome enough to wait for me!

Finally, I forgot to mention this last week when I posted about my recent doctor's appointment. I asked my doctor about my gene mutations because I wanted to make sure I had the correct information; turns out I was thinking I had one mutation when I had a completely different one. So you're thinking, so what? Well, it actually makes a huge difference! 

To give a quick little background, to have CF you have to get a mutated CFTR gene from each parent (basically) to have CF. Some of those mutated CFTR genes have been identified and they're starting to do research to see if your gene mutation means that maybe you'll have a milder form of CF, or a more severe form, or more lung issues, or more digestive issues, etc. 

I found out last week that I have one of the less common mutations in the CF world when I was thinking that I had the most common one. So this makes a difference because of this post: One Step Closer! They are doing clinical trials for a drug called VX-770, but it is only for patients with the G551D mutation--which I have!!! I, for who knows what reason, was under the impression that I had a completely different mutation and that this drug wasn't for me at all....turns out I was completely wrong. I learned from the doctor last week that I was tested when I was about 3 for my two mutations (one from each parent) and they could only identify one - G551D. Then, when I transferred to the adult clinic when I was 18, my doctor tested me again, because they had made so much progress with CF reseatch, to see if they could identify my other mutation but they still couldn't. I was given this information after my doctor got the results five years ago, but I must not have written it down or something but I'm so glad I asked again. Of course, I didn't realize all of this until I got home from the doctors appointment, so I don't know what my doctor knows about the drug, but I'll definitely be asking the next time I go (in December)--kind of exciting for me to find all of this out. So, I'll definitely be keeping a closer eye on the progress of the VX-770 since I know that it's something that could work for me if/when it becomes available to CF patients!

Clinical Trial?

Yesterday while I was at my clinic appointment, my doctor mentioned something to me about possibly being eligible for a clinical trial. The study is to compare the antibiotic Tobi (which I'm already on) to a new inhaled antibiotic called Levaquin. Currently Levaquin is only available in IV form, but they're hoping to get it approved in the inhaled for because inhaled meds work much faster (according to the study lady, named Spring!).
I haven't signed up for anything yet, I'm just getting the information today and I'm processing it. Obviously it's something that I need to talk to Tim about because Spring said that we are not allowed to get pregnant while I am participating in the study. I think I can put that off for a good cause.
The study will be about six months long. I will be on either the Tobi or the Levaquin (the doctors will know what I am on, but I don't think I will) for 28 days, then I will be off for 28 days and that counts as one cycle. I will have to complete three cycles in the study. The part that I'm hesitant about is all of the clinic appointments. I will have to do an initial appointment to make sure I am eligible for the study while I'm off Tobi. Then if I'm eligible, about two weeks later they will start me on the drug. The first time I take the drug I will do it at the clinic to make sure that I don't have any negative side effects before they send me home to take it - so we're already up to two clinic visits, in other words, two days off work. Then every time I go off and go back on, I have to go to the clinic and get PFTs, blood work, fill out questionnaires and be evaluated by the doctor. In the end, it adds up to eight clinic visits over the 6 month period. I'm just afraid of taking eight days off work. All of the clinic visits will be paid for by the study people and I will get compensation for travel (and free parking!).
There are just several pros and cons, I'm not sure right now. Obviously, I have time to think about it, the lady was extremely nice on the phone today and told me that I can take as long as I need to think about it. I've always wanted to participate in a clinical trial; I think it's such a great opportunity for me to be trying out a new drug (maybe) that could help so many people!
I'd love to hear your input on what you think I should do, or if you've participated in a clinical trial before. This is all new to me so I'm just processing right now. Thanks for listening reading.

Doctor Visit & New Vest!

Had my doctor visit today and it went pretty well (took some pictures for you). I had my PFTs scheduled for 10 and then I would see the doctor at 11:30. So, to start the very long day, I woke up a little before 6:30 so I could get in a set of treatments and some breakfast before I left around 7:20. I got about 20 minutes into my drive when I heard on the radio that traffic looked terrible on pretty much every way into Chicago, so I was not looking forward to my drive! I got backed up in traffic a LOT sooner than I normally do and at one point I was going 30mph and it felt fast. Needless to say, it was a long ride, especially because I had to pee the whole way!! (Sorry for the TMI)

Lovely Chicago morning traffic

Luckily I left with enough time and I pulled into the parking garage at 9:30 and checked into 5E-Pulmonary Procedures around 9:45 for my PFTs at 10...just in time! My pulmonologist wasn't very friendly or encouraging today, so it wasn't very exciting doing my PFTs. Sometimes you get the people who really encourage you and tell you you're doing great, which really helps sometimes, but this lady was pretty crouchy - oh well. She left the room several times, so I took a couple pictures to show you what the full PFT machine looks like. (If she was nicer, I would have asked her to take a picture of me in it...)

The machine on the right is where I sit. On the left is where the pulomonologist sits
and gives me instructions on how to breathe. All of my breathing is recorded on the computer
and made into graphs. 

The blue piece is what I put in my mouth (and I have nose plugs)
and it records all of my breathing.

When some of the tests are performed, the door is closed. Right now the door is open.

I did pretty well, overall, on my PFTs. They didn't go up like I wanted them to, but the best thing is that they didn't go down. The percentage in my small airways went up significantly, thanks to Advair, so I'll be continuing that. I updated everything in my "Health Stats" tab, but here's a quick overview. 

FEV1: 2.70L - 86% which is up a little from last time :-)

FVC: 2.97L - 76% which is pretty much the same. 

I did about 8 different tests today in that machine. I did a few in the beginning, then they give me a nebulizer of Albuterol and she tested me about 4 or 5 more times after that. In the test I breathe normal for a couple breaths, then I take in a deep breath and blow it out as fast as I can, for as long as I can (meanwhile the pulm. is saying "BLOW, BLOW, BLOW!") and then I take a deep breath in at the end, and I relax. I did this about 8 times, plus several different other breathing techniques/tests in between. I was pretty wiped out after, but it felt good. I was able to cough up some lovely samples for them, which they always love. 

After my PFTs were finished around 10:30, I walked down to 4D-Pulmonology to see my doctor. I actually got in a little early to see her, which never happens, so I was pretty excited. (But I missed you, Penny!) 

My doctor's huge binder with all of my files! Lots of paper
work every time. 

My doctor was very please with me keeping my weight the same and keeping my lung function stable/slightly up. She pretty much told me to keep doing what I'm doing and to keep it up. I'm hoping that with continued exercise and compliance with my treatments (haven't missed one since July 30th!) that hopefully my numbers will start going up instead of staying where they are every time. We talked for a while about everything that's been going on and keeping healthy. We decided not to change anything that I'm doing because it seems to be working. As I mentioned before, since the Advair seemed to have a positive affect on my small airways, I'm going to be keeping that up. So I'll be back again in three-four months, depending on when I can get back in. Probably sometime in the beginning of winter. So after we were done chatting, which lasted a while (it's pretty amazing to have such a great relationship with my Dr!), I finally headed out.  

This is the view from the parking garage, right behind my car.
Of course, it's always packed so I had to park on the top level. 

Of course the traffic is still there when I leave at 1:45!

Ahhh! Now this is more like it. Back home! :-)

When I got home, I had a little package waiting for me....my new PINK vest! Here it is!

Out Run CF

Since joining CysticLife and getting myself more involved in the CF community, I've come across this new awesome opportunity for exercise and CF awareness! The best part, is that anyone can do it! I've just started exercising (mostly walking) and this is something I plan on participating in this year, hopefully running! I am inviting every single one of my readers to register, too!


The first Out Run CF Virtual Race was a huge success. Runners and walkers from all over the world came together with one thing in mind, to Out Run Cystic Fibrosis! This fall, on October 1, 2011, we plan to do it again. The Rock CF Foundation and CysticLife are joining forces, once again, to bring you another Out Run CF Virtual Race.

In case you missed out last time, or need a refresher, here is how it works. Anyone and everyone is invited to participate: Fibros, Cysters, parents, spouses, friends, extended family, you name it! Participants will find a route near their house. Then on October 1, 2011, EVERYONE will lace up their sneakers and hit the pavement in their Out Run CF shirt (Each registrant will receive a t-shirt unique to this fall’s race from us in the mail).

No distance is too long, or too short. YOU pick YOUR mileage. 1 mile? 5K? 10K? 10 miles? Half Marathon? Marathon? It’s up to you! Nothing is too fast or too slow YOU pick YOUR speed. We just want to get the entire CF community out of their houses and into their running shoes on the same day, for the same cause.

Registrants can blog about their training, ask questions, and share tips on CysticLife.org. We want the entire site to be plastered with talk of exercise, running, and encouragement. On race day, we want people to post their times and their experiences. Let’s make this Virtual Race even BIGGER than the first one! Let’s make it the biggest race the community, and the world, has ever seen!!

So here again are the hard facts:

Who: Everyone
What: Outrun CF Virtual Race held by Rock CF Foundation and CysticLife
When: October 1, 2011
Where: Anywhere
Why: Because anyone can run—whether it’s for a minute or a marathon! Together we can Out Run CF.
How : Register at http://www.active.com/running/anytown-mi/out-run-cfvirtual-run-fall-edition-2011

Helpful sites to get you started:

CysticLife.org—Blog about your progress, ask questions about training to the community, post Airwaves with your daily run updates, connect with others to encourage them and be encouraged

Dailymile.com—Make and account and join the Rock CF/CysticLife group to track your miles and keep track of others!

Facebook.com—Join the Out Run CF group to see how many people are outrunning CF and connect with them!