The Vest

I got my first Vest when I was in 7th grade and I hated it! I hated that it made me cough and I would try to use every excuse in the book not to use it. It was big, bulky, very heavy and loud.

This is my freshman year of college - doing my treatments in my dorm.

Today, my Vest is portable, quiet and small.

You can see my traveling bag in the background (kind of dark).

If I didn't have the Vest, I definitely would not be as healthy as I am today.
I need to get a new size of the actual vest itself and now they have them in different colors and designs that you can put over the machine. I love this idea for children because it makes the machine a lot less scary and 'medical'. As I was looking on the Hill-Rom website, I found a couple cool links.
*To get the different "skins" for the machine
*The different color vests
*Need a reminder to take a break and cough? Or how about a Vest in Spanish?

I think it's really cool that they are adding all of these new features to this equipment. It definitely makes it more kid friendly (and adult friendly!). I'm not going to lie, this NIU skin looks pretty awesome! And since I have to get a bigger size for my vest, if they allow me, I'm totally going to pick a colored one. So, the big question is....light blue or pink?? Take a second to vote on the top, right hand side of the blog. I'll post some pictures when I get it! :-)

Gettin' Movin'!

The first day back to work is on August 30th for me, so from today until then, I have nothing to do. Since I have all of this excess free time, I've decided now's my chance to stop talking about exercising and actually start doing it! I started last Thursday and Friday with a two-mile bike ride each day. It felt good to get out and do something, but the bike ride felt like more of a workout for my legs than it did for my lungs.
Now, I'm not trying to exercise to lose weight because with CF losing weight is not a good thing. My purpose of exercising is to get my lungs working to get more mucus out than just what I get out with my treatments. It's also good to exercise for my bones and overall health for my body - which is why I'm calling it exercising instead of working out. And I'll admit, I'm lazy. So I've been talking about getting up and doing this for so long, I'm finally glad I'm taking some action.

After I realized that riding my bike wasn't working my lungs as much as I wanted it to, I thought about walking. Tim's aunt and I walked for a little while on Friday night and it was a nice start. Eventually, I think I'd like to start running...yes, that's right, running. And for anyone who knows me, you would know that I hate running. But I feel like it would have the best results for me, so my plan is to work up to that. I can barely run a block without getting out of breath, so my plan is to start walking a lot, then maybe start jogging a little bit while walking, then hopefully I'll be able to increase my stamina.
To throw in a little variety and fun, yesterday Tim and I went out to Game Stop and I bought Zumba for the Wii. I've heard from many people that it's a lot of fun, so I thought I'd give it a try. On crappy, rainy days like today where I don't want to go outside, I think something like that would be great for me. I tried it today for 20 minutes, and I haven't stopped clearing my throat since! It didn't make me have a huge cough attack (which I don't mind because I hate those), but I could definitely tell that it got some stuff moving around in there. YAY! Let me tell you, I probably looked like a complete fool trying to mimic the moves on the game, but hey, if it's going to make me feel better and get my PFTs up, then I'm all about looking like a fool for 20 minutes a couple days a week! I have a doctors appointment coming up in a few weeks and that's my motivation right now. I'm due for a full PFT so I really want to kick it's butt this time since the past couple of doctors appointments there hasn't been too much change (which isn't bad, but I'd rather see my lung function go up than stay the same). The full PFT is much more in depth and done only once a year, as opposed to the smaller, simpler test that I get done every time I see my doctor. Something else that I want to try is mowing the lawn. I know, this sounds stupid to say that I'm going to try it, but I've never used a lawn mower in my life. Since we live in a house, we now have a yard that needs mowing every so often. We also live on a corner, so we have a decent sized yard that needs to be cut. Since Tim's been so busy at work, and working a lot of hours, I felt bad having him do it after working all day while I'm sitting around all day doing nothing. So as soon as it decides to stop raining this week, I'm going to have Tim show me how to use the lawn mower and I'm going to give it a shot. It's more opportunity for exercise and it's something that needs to be done, so why not?!
My only worry is that when school starts up again, I'm not going to exercise as much, or not at all. That's why I'm trying to find a variety of things to do, that I also enjoy, so that I am motivated to keep it up. I also think it's more fun and motivation to exercise with a friend. I've had a couple people volunteer to start walking with me, so that's been good. I'm just hoping that I can get into a routine, especially when work starts up again and keep this going...and never stop!

You Know You Have CF When...

This is something I found off of my new favorite site, CysticLife. Obviously not all of them apply to me, but most of them do! Enjoy!
*You do a happy dance when you hack up a huge wad of mucus, show your dad, and he gives you a congratulatory high five.
*You know more medical terms by the age of ten than most people know their whole lives.
*You have your pharmacist, family doctor, CF doctor, the emergency room that you always use, and your medical insurance company as numbers 1-10 on your cell phone's speed dial.
*You have multiple scars from PICC lines, IVs and other 'experimentations' as the doctors like to call them.
*You are so used to getting your blood drawn that you are the proverbial 'test dummy' for all the new nurses fresh out of college - you don't mind, do ya?
*You have antibacterial gel in your purse, in your car, on the kitchen counter, in the bathroom, in your friend's dorm, in their car - hell everywhere!
*You can smell smoke hundreds of feet away and go searching for the source so you can thump them upside their retarded heads!
*You adamantly think that smokers are some of the dumbest people you know!
*You laugh at those who bitch and moan from a common cold or worse yet, stay home because of it!
*You are truly sad for those cute little lab mice who must suffer from experimentations so we can have medicines to help us live - for about 1 milli-second then you jump for glee because they came up with something to help you breathe!
*You can instruct the nurses how to work the IV machine at the hospital.
*Some of the most memorable times with your friends is hanging out and wasting time at the hospital.
*You have also learned who your real friends are because most people can't take the pressure of being around a person who has CF.
*You make people wince on a daily basis because of the sound of your cough.
*The checkout lady at Wal-Mart has confidently told you that she just got over whatever I have and Theraflu worked for her, which you calmly and sarcastically say, 'I will make sure to tell my doctors.'
*You can sleep through anything - you perfected the skill by being shaken by your Vest all of these years.
*You are a multi-tasker by need. While you're doing your Vest you MUST eat breakfast, do your nebulizers, homework, make-up, straighten your hair and have a conversation with your mother about your most current ache in your chest all at once or it would never get done.
*You learn by the age of 15 that life is a gift and most people don't see it's pretty paper.
*You have used your Vest multiple times as a torment device for your dog by blowing air at him and watching him try to catch it in his mouth, entertainment device for kids because a shaking vest is a fun 'toy' and a laughing tool for adults when you try to talk to keep up with the conversation, even on the maximum setting.
*Many adults have commented to you that you are very wise/mature for your age.
*If Albuterol and Xopenex were living things you would marry them because according to you, they were sent from heaven by God to us CFers for a little help in the breathing department.
*You laugh at your friends and their newest drama - ha! Don't we all wish it was THAT easy!
*You are constantly on the go, realizing that time stands still for no one.
*You feel as if there is ALWAYS someone worse off than you somewhere.
*You truly get pissed at people who don't put 'yes' as organ donors on their driver's license.
*You grew up thinking that everyone in your class does machines, nebulizers, inhalers, sprays and pills for an hour or two each morning before they came to school and an hour or two after.
*You are more scared of losing your loved ones, family and friends than you are of dying yourself.
*You realize at an extremely young age that you can buy everything but time and as a CFer, that is one thing you would love to have.
*You get asked on a daily basis how old you are - and you just have to laugh when people rudely say you look 12 and not 18.
*When dogs and babies lick your ever-so salty skin.
*After working out, or just being in the heat, you have a visible film of salt covering your entire body.
*You look at food labels and say things like, "Sweet! 600 calories per serving!"
*You are so tired of people saying "have another smoke!" after you finish a coughing fit, and you wonder if they are worth the real explanation.
*You have an extra dessert and everyone wonders where you put it, because it sure doesn't go to your hips!
*You make sure you don't go to the bathroom BEFORE you get weighed at clinic - every ounce counts!

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! :-)