Communication

People with Cystic Fibrosis are not supposed to come into contact with other people with CF because they can share each others germs and/or get each other sick - makes sense, I suppose. But sometimes it's nice to be able to talk to someone who really understands what you're going through, and thankfully the internet is making that possible today. I recently joined a site called CysticLife which is a site where people with CF (or people that know someone with CF - like you!) can chat with each other, or post questions to everyone and get some advice and feedback.
I really enjoy being a part of this site, because although I know I have so much support from Tim, and my friends and family, it's hard for anyone to know exactly what I'm going through or how I'm feeling. It's nice to be able to hear what other people with CF are going through and see what works or what doesn't work for them.
Like I mentioned before, just because you do not have CF doesn't mean that you can't join the site. I am considered a "cyster" because I am a female with CF, the males with CF are called "fibros" and then everyone else would be called "husband, wife, mom, dad, friend, etc." If you're looking for a site where you can get more personalized stories, or you have questions about your role in a CFers life, this is the perfect place to go!
I'm very interested in hearing how other people feel when they have someone with CF in their lives. That's another part of the site I really like. I can read stories or answer questions from parents who have children with CF. It makes me think about how my parents must have been feeling when they were raising me.

What is it like for you to know someone with CF (maybe not just me)? Does it make you think any differently, or do you completely forget about it until I post something about CF? I honestly would love to hear other people's points of view on what they think about my CF, or what they thought when they found out, etc. Please feel free to share your thoughts by commenting at the bottom of the post (or if you don't feel comfortable doing it publicly, you could always send an email). :-)

Keeping Busy & Staying Healthy!

The past couple of weeks have been busy, but very good. We have been able to cross off a few more items on our summer "to-do" list. I celebrated my 23rd birthday, Tim and I visited his sister Katrina who lives near St. Louis, summer school ended, we finally painted the last room in our house/apartment, and we went to Starved Rock. We didn't do too much for my birthday this year, which was fine with me. Tim bought me a hammock for the yard (which we have yet to get out there) and we went to dinner with a couple of friends. A few days later we were headed down to southern Illinois to visit Tim's sister, Katrina. While we were there for the weekend, we all went to the St. Louis zoo and on the Anheuser-Busch Brewery Tour.
There was also lots of baby talk (which I'm sure Tim loved) because in a couple weeks Katrina will be finding out if she's having a boy or a girl! Personally, I'm thinking a girl, but we'll see.... Summer school ended last week on Thursday, so now I have more free time to do who knows what. I still have my Spanish class Monday-Thursday afternoons, but that's it. I found a few empty collage picture frames in our basement, so my goal is to get those filled, hopefully with some honeymoon pictures. Now that we finally have our last room painted, as of Saturday, I want to get the walls filled with pictures and things to make it feel more homey. I love the way all of our rooms have turned out with the paint, so I'm excited to get some more decorating done - that's the fun part for me.

Inside a canyon - click on the picture
to enlarge it.

Yesterday, Tim and I met our friends Amanda and Neil, and their friend Eric at Starved Rock to go hiking. Of course it was about 90 degrees, 95% humidity and a heat index of about 102, but we survived! For those of you who don't know, I hate hot weather. My ideal day is about 75 degrees, so this 95 degrees with lots of humidity is definitely not my thing! But I love going to Starved Rock because it's not too far from where we live and it's beautiful (we actually considered getting married there, but for some reason decided against it - probably too expensive). It's fun to hike through the trails and see the different cliffs and canyons. Luckily for us yesterday, there is a lot of shade there. I packed a water bottle and bought a Gatorade for myself and brought lots of snacks to stay hydrated and to keep replenishing body's salt. (Click here to read about why salt is so important for CF patients.) We also decided to start our hike in the morning, hoping that we'd get out of there before it got too hot. We probably hiked for a good three hours and went about 6 or 7 miles, we think. It was fun, even if we were all soaked with sweat. It was great to catch up and hang out with friends without having to spend any money! (Except for lunch afterwards).

Looking out over "Lover's Leap" at
Starved Rock

I'm so glad to be keeping busy this summer, even though during the week I have a lot of down time. Tim's finally working regular hours now, so that makes planning things so much better! We have lots of family things coming up over the next few weeks, so that will be keeping us busy. This weekend I'll be heading to Wisconsin with one of my awesome friends for a four day country concert event which I am VERY excited about!
And even with keeping as busy as I am, I've been feeling really good! I've been trying really hard to keep up a routine to make sure that I get in both sets of treatments each day (much easier said than done) and I plan on lugging all of my equipment up to Wisconsin with me this weekend. I have definitely learned that I need to get over the embarrassment and awkwardness of doing my treatments in front of other people. For example, when Tim and I (or just me) go out of town for a weekend or more, I never used to bring my treatments with me because it is a lot to bring, but I also didn't like doing my treatments in front of other people. I guess I was just afraid that they would judge me or look at me differently because in the back of their mind, they knew I had CF, but now that they are seeing all of the treatments I had to do, it was a reality to them. (Obviously, no one has ever said this to me - this is just what goes through my head.) I've learned that people understand that I need to do my treatments, even if they may not know exactly why it's so important, so I just need to suck it up and do them. I'm getting to the point in my health, where I can feel a difference with my lungs if I miss several treatments in a row, so I know that it's very important that I keep up with everything, even if that means lugging everything around. When I do go to Wisconsin this weekend, here's a list of everything I'll need to bring (just for my treatments).
- Vest machine (plus it's bag, both tubes, power cord, and the actual vest.)
- Nebulizer machine (plus the tube)
- Three nebulizer cups and all of their parts
- Eflow machine (and power cord) for TOBI
- Eflow nebulizer cup with all of the parts (and a cup of alcohol to soak the filter piece)
- 8 Albuterol vials
- 4 Hypertonic Saline vials
- 4 Pulmzyme vials
- 8 TOBI vials
- Cooler to keep Pulmozyme and TOBI cold
- Bag or something to carry all of it in
- Bottle of enzymes and weekly vitamin organizer (not for breathing treatments, but I wouldn't be able to eat anything without my enzymes and I'd feel like crap without my vitamins)

So on top of whatever you would have to pack for a four or five day trip plus everything above, and I think I'll be good to go! Good thing I have lots of space in my car! Hope there's space at Karissa's family cottage for me and all of my belongings!!
This post got to be a lot longer than I thought it was going to be originally, but I like to tie in my CF whenever I can and here it just kept going....Here are a couple pictures with Katrina's dogs Champ (yellow) and Oscar (black) with me while I was doing my treatments down at her house last weekend. They don't judge! :)

The Next Step

This past weekend we spend our time with Tim's family celebrating our nephew's first birthday, which was a lot of fun! Throughout the weekend, I got asked several times when we were going to start having kids, and told that 'we were next'. Tim's oldest sister is pregnant with her first child, due in December, and the birthday party was for his middle sister's first child. He's the last one (youngest) of his siblings, so I know that everyone's waiting and expecting us to have kids one day, too. We both want to have kids, so it's not stressful or annoying when people ask or make comments about us having kids - it actually gets me more excited because I know that they are all very supportive. It's one of my ultimate goals in life to become a mom and I can't wait for that day! Note: I am not pregnant. There's so much decision making and things to think about before even trying to get pregnant: finances -especially!, work, our schedules, living arrangements, support system, and so much more. It makes me so thankful that Tim and I have such good communication to talk about all of these things.
Another big topic of discussion for us is me having Cystic Fibrosis and wanting to get pregnant. Most men with Cf are infertile, but women with CF are fertile and can have kids. Hopefully for me it won't be too difficult to get pregnant, but I just need to make sure I stay healthy. My CF specialist and my OB/GYN are both on board with me getting pregnant, whenever that may be. Typically, they suggest that women don't get pregnant when their lung function is 40% or lower and mine is in the mid-80s, so that's a good thing and they don't think there will be any problems with that.
Along with me having Cystic Fibrosis, the baby could have CF, too. That all depends on whether Tim is a carrier of a defective CF gene or not. If he is not a carrier, than our children will just be carriers - meaning that they will not have CF, but they could pass it on to their own children. If Tim is a carrier, our chances increase for our children to have CF themselves. That is something I go back and forth about - I don't want to see my child go through some of the things I have with CF because I know what it's like. Even though I know they are so much closer to a cure now than they ever have been, there are so many more treatments, medicines and therapies, and people with CF are living longer, healthier lives; it's not something I would want for my child. I just think it could get pretty tough, especially right after the baby was born, to keep myself healthy and take care of an unhealthy child, but I know that Tim is going to support me 100% and that we have so much support from family and friends that we could totally do it. But then I don't know if I'm being selfish because I'm taking that chance of my child having CF because I want to have kids so bad.
Tim hasn't been tested to see if he's a carrier because he has always said that it doesn't matter to him whether our kids have CF or not (which I think is the sweetest thing - he's going to be such a wonderful dad!). I still go back and forth because on one hand, if he is a carrier I don't know if it's going to impact how I feel about trying to get pregnant, but if he is not a carrier, I think it will give me a little sense of relief because they can only be carriers. It's obviously something that we need to keep talking about, but it just goes to show you how much more there is involved with us trying to have a family than I think there is with other couples. That is what I wanted to get out there with this post. As much as I would love to have kids right away, there is so much to consider normally, plus with all of my health issues on top of it. Another huge factor, for me especially, is the finances. We are doing fine with the two of us and our jobs, but having CF definitely gets expensive. Between every prescription and multiple bottles of vitamins (hundreds of dollars a month) and doctors visits (little over hundred dollars for the visit - just to see the doctor - getting PFTs, x-rays and blood tests just add more, plus gas for 150 miles round trip every three months) things can definitely add up if we add a baby in the mix, especially if he/she has CF, too.
I'm not trying to say all of this to get your sympathy, or for you to feel bad for us, or to make it look like we're struggling because we're not. I just want people to know how much extra thought goes into this (on my part - I'd love to know what else Tim's thinking!) when I think about having children. Having a baby in a family where the parents don't have severe health issues is tough, so I know it'll be tough for us, too. I just think that sometimes people maybe forget that I have CF when they ask about us getting pregnant, and that's okay! I just want people to realize what's on our plate and that I'm still trying to make the best decision for us. Like I said before, it shouldn't be too hard for me to get pregnant (hopefully!), but it's a huge decision for us and I just hope that we're making the right one if we do get pregnant. I don't want to sound full of ourselves, but I think we're going to be awesome parents whatever does happen. :-)

Hola!

Not too much has been going on since my last post, but I thought I'd give a little update. The school year's officially over now and summer school has begun. I did get an official note, in writing, that I will be an assistant again next year. That's definitely good to know if I am unable to find a teaching job for the fall, at least I'll still have my job at the school I was at this year, which I love! For summer school, I am working in an Early Childhood classroom, so it's a change of scenery for me for sure. Early Childhood is like Pre-K for students with disabilities (physical, developmental, etc). The students are three and four years old, and not really my favorite age of students to work with, but I enjoy the adults I'm working with so that's a plus for me. Summer school is only twenty days long, Monday thru Friday from 8-12.
Then straight after summer school, I am going back to school myself. I've decided to take Spanish 101 at the local community college because the school I work at is turning into the ELL (English Language Learner) hub for the district in the fall, so I figured I better start learning some Spanish! This means that there will be at least one bilingual classroom at each grade in our building; so a much different population of students than we had this year. My Spanish class started on Monday, and so far so good. I haven't taken a Spanish class since 7th grade, so in about ten years (I don't even feel old enough to say that I haven't done something in ten years!). So it will definitely a learning experience for me, but the teacher is really nice and it's a pretty small class of about 10-15 students.
Besides summer school and my Spanish class, I haven't really been doing too much else. We haven't done anything else on our summer "to-do" list, so there's nothing to update there. Tim actually added golfing and fishing to the list, so we'll see if we get to those this summer. We've set a date for our trip down to see Tim's sister near St. Louis, so I'm looking forward to that in a few weeks. Otherwise to kill time I've been reading and watching TV mostly, nothing too exciting. I've made a couple trips to the library - once on my bike to get in some exercise. Our next big plans that we're looking forward to is next weekend, which is our nephew Cole's first birthday party, so that will be fun!
Keep you posted. Adios! :)

Checking Things Off the List

It's definitely felt like summer this last week, especially weather-wise. Tomorrow is the last day of school and it's only a half day! :) The staff is supposed to be there all day, but we have a "staff meeting" at a local restaurant at 1:00pm.

Tim and I are now able to check our first thing off of our summer to-do list after this weekend. Saturday, Tim spent the whole day at a concert with his friend Chris while I attended my cousin's high school graduation party and my friend's college graduation party. It worked out well because everything was in the same area pretty much, so I was able to drop off and pick up the guys from the concert. They both got pretty burnt, and also very wet as it rained, well poured, for about ten minutes on them, but I know they had a lot of fun. We stayed the night at Chris's house and played Apples to Apples with his family that night (so hilarious!). This morning we came back home to drop off Chris (and check on Archie) and then we headed up to Rockford for the AirFest! 

We loaded up with sunscreen, but of course I still got burnt, but not too bad - it was about 95 degrees and very sunny all afternoon. Next year I'll have to remember two umbrellas for shade (only had one this year), to bring a backpack instead of a purse (easier to carry) and to pack a cooler full of Gatorade for the ride home! A side effect of cystic fibrosis is that my body cannot move salt in and out of it's cells, so it exits through my sweat glands. So when I sweat, especially a lot on a day like today, my body releases salt with the sweat. My skin was covered in salt today (you literally could see it all over my legs) from being so hot. It's much better for me to drink something like Gatorade when I'm outside and sweating because it has salt in it, so it helps me replenish the salt that I'm losing. Obviously, it's still good for me to drink water too, to stay hydrated but anything with salt is good too. So anyway, we went to the nearest gas station as soon as we left the airport to get some Gatorade and they only had one left, and unfortunately it was grape (yuck!) but I had to get it...I survived. Here are some pictures and a quick little video from our day! Enjoy!

The cockpit of the huge helicopter below.

Heavy Metal Jet Team

Heavy Metal Jet Team

Trying to stay cool -- thank goodness we brought that umbrella!!

A retro plane from 1947 called a Cessna.

We're back now and I'm fighting to stay awake. Our show, The Killing, is on tonight at nine, so I have to stay awake to watch it! I think it's time for some dinner and relaxing. Last day of school tomorrow, woo hoo! :-)

Summer Plans

With today being 90 degrees and sunny, it definitely has me thinking about summer. A week from today is the last day of school where I work, so then it'll officially be summer for me. This summer, it seems like we have a lot of family events going on between graduation parties and birthday parties which will be a lot of fun. Tim and I started making a list of things we want to do, or already have planned, for the summer on the fridge. He is going to a concert this weekend and I'm going to Country Thunder in July. We are going to the Rockford Airfest this Sunday. We used to go to Starved Rock a lot, but we haven't been there in a while, so we'll definitely be making a trip or two there over the summer....hopefully. I added St. Louis to the list for wishful thinking. Tim's sister lives close to St. Louis and we'd love to go down and visit her, but since she recently found out she's pregnant and her husband will be returning from overseas (finally!), we think it might be hard to find some time that works for us, so again...wishful thinking. And the other day, Tim added a cook out to the list. Since we finally are in a house with a yard, it would be really fun to get all of our friends over sometime this summer to grill out and hang out at our house.
On top of all of these wonderful plans and ideas, we'll both be working. Tim will be working full time and hopefully not on weekends (more wishful thinking). I'll be working as a teaching assistant for summer school for the first half of the summer. It's only Monday-Friday from eight to noon for about 4 weeks. This will still give me afternoons, evenings and all weekends off, so I'd really like to find something else to do. I would like to find a part-time job or something that can bring in income, but I honestly have no clue what I could do (suggestions welcomed!).
One of my plans to fill up some of that time is to start exercising. This is where I really need some ideas and suggestions. I am not a runner, so I am planning on riding my bike around the neighborhood maybe a few times a week, or even everyday would be nice. I would really like to do something that I enjoy. I'm not doing it to lose weight or anything, but a person with CF really should exercise to keep their lungs healthy. Raising my heart rate makes me breathe heavier, which in turn, makes me cough (which is a good thing) to get everything out. I also just want to get my body in better shape and to just be healthier overall. I'm looking for any suggestions for fun things that I can do indoors and/or outdoors - maybe mix it up a little bit. I'm all about listening to music while I do it too, because I think that will give it more enjoyment. I don't have much endurance, so whatever I do will have to start off pretty light and easy and hopefully I'll be able to lengthen whatever I'm doing throughout the summer. I'd really love for this summer to be productive for me health-wise since I'm really wanting to get my lung function in tip-top shape. Any and all suggestions are appreciated. It really seems like we're going to have an eventful summer, and I'm very excited to start! :-)

News

Well, the suspense is over. In the mail on Thursday I got a letter from the middle school I interviewed at saying that they chose someone else for the job. Honestly, I wasn't too upset because I wasn't really getting my hopes up for that position. Then yesterday, I got another letter in the mail from the first place I interviewed at, also saying no. I was pretty annoyed that it took her over two weeks to mail me a letter saying no. She could have at least called like she said she was going to, but hey, there's nothing I can do about it now. I really was hoping to get a position there, considering there were three in the school, but oh well. I am still waiting to hear from the district of my third interview I had this past Tuesday. I am going to keep applying for jobs as much as I can; a few positions were posted in my current district and local districts, so I keep applying for those. If I give up now, I'm definitely not going to get anything, so I just have to keep my head up and try to stay positive. I got some good experience with those interviews, so I am more prepared for future ones.

In other, more exciting news, Tim and I adopted a cat last Monday. His name is Archie and he's almost two years old. We went to the Humane Society, Tails, on Sunday to look with a friend because he wanted a cat, and we ended up finding Archie and loving him! On Monday, Tim bought the litter box, food and water containers and anything else we needed for him before he went to work. After work on Monday, I went back to Tails and picked him up. He's been making himself right at home this week. He loves to look out windows and follow us around everywhere. The first couple days, we were practically stepping on him because he always wanted to go where we were. He's starting to explore on his own and be a little more independent. He's very loving and loves to roll around and be petted. I've never had a cat before, and actually Tim and I are both allergic, but we've been doing fine with him. I think we've built up some immunity being around cats in Tim's family. Here are a couple pictures from the first few nights he was home:

The first few nights we kept him in the bathroom to make sure he used his litter box.
This is where he decided he would sleep - on a shelf above the toilet. He knocked
everything off and made himself comfy!

This really shows his color. He didn't like the camera flash so the rest of the pictures are
kind of dark. He looks fat here, but he's really not. He loves to roll around like this on the floor!

Archie, up close and personal.

Smiling for the camera

Sleeping with Tim on the couch. He loves to sleep on the couch and recliner.

The boys bonding.

Still Waiting

I just wanted to give a quick update on my interview that took place a couple weeks ago because I've been asked about it a lot. The interview was on May 5th and I was supposed to hear something by May 11th, but I didn't get a phone call, email or letter indicating whether or not I got a job. On the 11th though, I was contacted by my current principal who was called by the interviewing principal because she is one of my references. Since then, I have not heard anything from the principal, but I know that I am/was one of eight people considered for the three positions. I have no idea what is going on right now and don't really know what to do. I don't want to contact the principal because I don't know what I would say. I know that she has a tough decision to make, so I don't want to feel like I'm bugging her -- I feel like she'll contact me when she's ready, I know how crazy busy principals can get.

In the meantime, I have had two other interviews, so that's kept me busy. Last Friday, the 13th, I had an interview in the same school district as the first one, but at the junior high school for a sixth grade math and science position. I actually answered the same scripted questions as my other interview, so I wasn't really caught off guard by any weird questions. I am supposed to hear something, either way, by the end of this week.

The third interview I had was just this afternoon. It was again, two hours away, but for a different school district, and surprisingly, the SAME questions. I am really getting to be a pro at these questions....I think! I was a little mad that I drove down two hours to answer the same questions because every time I've interviewed they have been recorded. I wish they would actually share them with each other! Oh well...not much I can do about that. This interview was with two principals from different elementary schools in the district and it was just a screening interview (which just means they're interviewing a bunch of people to see who they are actually interested in and who they are going to weed out). I was told to call the district office in a couple of days to see if I made it into the pool of candidates. If I did, then all administrators in the district will be able to view my interview and can call me in to interview with them.

So again, it's just a matter of waiting for that call. Hoping I answered the questions the way they wanted, that I impressed them enough in that 20-30 minutes of awkward questioning that they'll ask me back for another interview, or if I get really lucky, offer me a job. I will definitely keep you posted as soon as I hear something! Thanks to everyone who's been sending their positive thoughts and well wishes my way! :-)