Sunday, July 31, 2011


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). :-)

Monday, July 18, 2011

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! :)

Friday, July 1, 2011

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. :-)