Life in General

It's been too long since I've posted a non-pregnancy related post, but it's pretty hard when that's constantly on my mind! Last "normal" post was in February, I think...oops!

Anyway, we've been keeping extremely busy over the past few months. I'm pretty sure Tim started

nesting as soon as we found out I was pregnant. He's been a working machine! He completely refinished all of the hardwood floors in the house which look fantastic. He redid the ceiling (scraped the popcorn, sanded, added drywall and painted) in the living room and added a fireplace and mantel to the living room, as well repainting it all. The nursery is finished construction-wise, but still has lots of organizing and decorating to do once we get more baby supplies/furniture from our showers in June. We just had a new roof put on our house last week. Tim's also planning on adding a patio and pond to the backyard, as well as repainting the ugly blue siding on our house. And if he can get all of that done before August, I know that the kitchen is next -- which includes repainting the cabinets, extending our pantry, laying new hardwood floors, installing a new countertop and knocking down a wall...and he says there's not much to do in there... :)

I've tried to help out as much as possible but with being pregnant and not super handy, I've only done some of the painting, helped scrape the ceiling and helped move things when I could. Tim has been excellent at getting everything done even when he works full time doing the exact same stuff for work everyday...I don't know how he has the energy!

This last weekend we had our second Great Strides walk! Our team has raised around $1,200! We had gorgeous weather and had a great time visiting with all of Tim's family for the weekend. I did one of the opening speeches about my life with CF and how I had to kick my butt over the last few years to get my body ready for a pregnancy. The speech was a little scattered (pregnancy brain!), but I always enjoy sharing my story with others. Afterwards, I went to join my family and our almost 4 year old nephew gave me a high-five and said, "that was awesome!"

My biggest fan :-)

In other news, I've been pretty busy wrapping up the end of the school year with my little boogers and preparing for maternity leave in the fall. I recently learned that next year I'll be teaching Kindergarten again, so I'm really looking forward to that. It'll be much easier coming back from maternity leave to a grade that I've taught before instead of third grade like it was before. We're down to ten days of school left! This school year has flown by, thankfully, because my class has a couple (four to be exact) handfuls that I'm am definitely looking forward to getting a break from....lol. This summer I'll be moving rooms, again. Thankfully my principal and custodian are wonderful at accommodating all of the pregnant teachers who have to move this summer and doing our rooms first. I'm hoping to have all of my bulletin board fabric and boarders up the day after the last day of school. Then all I'll have to do when I come back after the room is cleaned is arrange the furniture, hang posters and organize. Anyone willing to come down this summer to help me out with that is more than welcome!

Speaking of summer, ours is full! Between baby showers, friends' weddings, family parties and a weekend trip to St. Louis for a Cardinals game, Tim and I will be super busy! Luckily I'll have still have weekdays to put my feet up and relax, :-), but my poor hubby is going to be going non-stop! Hopefully he'll get a few relaxing weekends this summer before the sleepless nights begin in three months! :-)

CF Awareness Month Blog #26 - In Memorium

So far in my life, I've only personally known one CF patient who's died, my friend Joe, and it was very difficult for me. And I say 'so far' because I know that as I connect with more cysters and fibros in the online CF community, eventually (hopefully years and years down the road) I'm going to start losing more friends. It may not necessarily be to CF, but it's still tough when you have that connection with them. You know exactly how they were feeling and what they had to deal with day to day.

Summer 2005 - 17 years old

When I walk in Great Strides, or when I'm running around my neighborhood, or feeling particularly negative about wanting to do my treatments, I think about my friend Joe. I'm doing this, whether it's running, raising awareness, or doing my treatments, because I can. I think about all of the things that Joe wanted to do with his life and how, unfortunately, he's not around to do them anymore. I think about how he would want me to be happy and healthy, and to do the things I love. I do it for him. I do it for those who have lost their life from CF. To show them that I'm not going to give up because I know they didn't give up when they were fighting, too. I am doing everything in my power to make those who are no longer with us because of CF, proud. And their families proud. I do it to prove to myself that I can beat CF each day. I will not let CF run my life.

Donate Life

*Note: This post only expresses the views of the author - you may have a different opinion and the author is no way trying to tell you you're wrong - everyone is entitled to their own opinion.*

This is not a topic that I thought I'd be writing about on here, at least not yet, but I was on CysticLife this morning and someone posted how they recently registered to be an organ donor. It made me stop and think about if I checked that little box when I renewed my drivers license? I don't think I did.

http://www.donatelifeillinois.org/

Personally, I think organ donation is a wonderful gift - it's the gift of life! I mean, what are you going to do with your organs and tissues after you die, really?! Why don't you give them to someone who can use them??

In high school, I met someone named Joe who had Cystic Fibrosis. He wasn't always the healthiest, but he was one of the funniest, most positive people I have ever met. When I told my mom about him, she kind of looked at me funny, asked me what his last name was, and when I told her, she knew who he was! Apparently our parents had met when we were both little kids at some CF conference thing, but they didn't keep in touch. When I was in 8th grade my family moved to a new town, and Joe and I ended up going to the same high school. Crazy! Anyway, we became friends, even though we knew we weren't really supposed to be within three feet of each other (CF rule so that we don't spread each others germs/bacteria), we ignored it. He was in and out of the hospital a lot throughout high school and when we graduated, he didn't go off to college because of his health.

Summer 2005 - we were 17 here

We kept in touch when I went to college and in September of 2007, Joe had a double lung transplant. By the time he got his new lungs, one of his lungs was 75% unusable, the other was 50%, and he was on 8 liters of oxygen a day. This double lung transplant came at the perfect time in his life and gave him the chance to live again! Once he recovered, he was like a new person and he was able to walk his dog, Sophie, again (he loved that dog!)! The next fall, Joe went to college in Chicago for video game design. Unfortunately, him and I didn't keep in contact as much as I would have liked. In May of 2010, Joe developed some sort of cancer from his transplant, his body rejected his new lungs, and Joe passed away.

It came as a huge shock to me because I thought he had been doing so well and I didn't talk to him as much as we used to because we were both so busy. He was the first person I personally knew with CF (besides my distant cousins who I hardly ever saw) and it hit me really hard when he was gone. I couldn't believe that someone I went to high school with wasn't alive anymore, he was just too young. But because of his double lung transplant, he was able to get another two and a half years with his family and friends, and be able to go to college and live a wonderful life. If he wasn't given that second chance, he could have died right after graduating high school.

I'll admit, I didn't sign up to be an organ donor right then, because honestly I thought my organs couldn't be used because of my CF, but it's made me much more aware of organ donation. Obviously, they're not going to use my lungs, but that's not all people need. They use 'liver, heart, lungs, kidneys, pancreas, small intestines, corneas, bones, saphenous and femoral veins, heart valves and skin'. (http://www.donatelifeillinois.org/donatelife/faq.htm).

I know that this is a personal choice/opinion, but really, what are you going to do with you intestines or heart valves when you die?? You could give someone else the chance to live for another two and a half years, or many more years with their families, kids, spouses, friends, etc. by checking that little box when you renew your license, or registering through your state. Who knows, one day I could be in Joe's shoes where my lungs are barely functioning and I'm just waiting for the right set of lungs to come around to extend my life. I understand that it takes a person to die to donate their organs, and that's not always pleasant to think about, but I feel like it's such an amazing last gift to give someone so that they can live. I am proud to say that I am now officially an organ donor and that I really hope I can impact someone's life when that days comes when my life is over.


Are you an organ donor??

"Congratulations on your decision to help save lives!" - from the Donate Life website after I registered today! :-)

Life

Recently, I've been noticing how different my life is from people my age. I am twenty-two, graduated from college, looking for a permanent full-time job, married and thinking about having kids in the near future. Not many people my age, some even in their late twenties, are at this place in their life. We are the first married couple out of all of our friends and I can think of only one other couple that we hang out with that's engaged. We're all at such different points in our lives right now, it's a little weird sometimes. Tim and I are starting to think about where we're going to live and settle down, and our friends are just graduating college and maybe going back to live with their parents. Sometimes when I hang out with my friends, all we talk about is our jobs because pretty much all of my friends are in education. :) I don't mind talking about work with them, because I love my job, but at the same time I don't feel like we have much else in common at this time in our lives. Some of my friends are maybe just beginning new relationships or not even thinking about getting married right now, so I don't think anyone can really relate to us being married and thinking about having kids.

When I say all of this, I don't mean it as a bad thing, it's just something I've noticed over the past couple months. I don't want to change anything in my life right now, I absolutely love being married and where we are in our life. We also have great friends who support us and still want to hang out with an 'old married couple'! It'll just be interesting to see how things go over the next couple years if we have to move for a job, or we start having kids, how our lives and friendships are going to change. I'm excited because I think the next few years of our life are going to have some major changes and can't wait to see where life takes us. :-)

"I Have Cystic Fibrosis"

This post is all about what it's like telling people for the first time that I have CF. I can't imagine what it was like for my parents when I was born, having to tell my whole family that I had CF. No one knew what it was, so I'm sure they were all scared. Even today not a lot of people know what it is, so when I do tell them, I have to also explain what it is. When I was little, I feel like me having CF was kind of "hush-hush" and no one really talked about it except around the times I had doctor appointments or Great Strides walks. As a kid, that didn't bother me, I was used to not talking about it or telling people about it. But as I got older, I felt like it was a part of who I am and I didn't like hiding it from people. When I went to college, luckily I had a roommate who was a friend, so she knew about everything before we lived together; that made it easier for me when I had to do my treatments. When other students visited our room though, my vest was always sitting out (and it was still the huge one) so people would be curious about it. I really like to let people try my vest when they see it for the first time, so they know what it does/feels like...and it's really funny to see their reaction when they have it on!

When I met Tim, I was only a few weeks into my freshman year of college. When we started hanging out more, I knew I had to tell him, somehow, about CF but I was so afraid to. I never know how someone is going to react, so I was nervous to tell Tim especially because I didn't want to scare him away! I ended up telling him online because I was too afraid to do it in person. Of course, doing it this way, I couldn't see his reaction, but I later found out that he looked it up online as we were talking about it. I think it freaked him out a little bit, but it didn't seem to change anything between us. It felt like a weight lifted off my shoulders because then I felt like he knew who I was and I wasn't hiding anything from him. He has been so supportive ever since. He always bugs me about doing my treatments and making sure I am staying healthy. He came to the Great Strides walk with me in May 2007 after we were together for about seven months, and helped me create a team. He told his family about my CF and they were so supportive about it and they donate every year to Great Strides. It's nice knowing that his whole family knows about me having CF and accepting me for who I am.

I've always been afraid that when people find out, they're going to treat me differently because I have a chronic disease. I don't want people to think, "Aww, she's sick, I better treat her nicely" or "Aww, she's sick, maybe I shouldn't get too close." I don't know what people think when they hear I have CF. I'm never going to say to someone, 'Hi, my name is Colleen and I have Cystic Fibrosis.' To me, I'll tell people when it comes up--they see me taking my enzymes before I eat and ask about it, or they're coming over and they see my Vest. Sometimes if I don't know a person too well and they hear me coughing and ask if I have a cold, usually I'll just tell them yes because it's just easier. To me, the hardest people to decide to tell are co-workers. I worked at Menards for a few years and I finally worked up the courage to speak at one of our meetings about CF and Great Strides to try to get more people involved. After that, I didn't notice any difference in how people treated me, and honestly, I'm sure a bunch of people forgot after a while.

Now, working in the school district, I'm debating with myself again if I should tell people or not (the ones who are my facebook friends probably now know from this blog). I was talking to my principal one day (who is amazing!) about taking a day off work for a doctor's appointment and she asked if everything was OK, so I told her that I had CF and that I have to go to the doctor every three months. She was surprised because she had known me for a year and had no idea. She asked a couple questions about how I feel and if I'm doing well and that was that. A couple days later, I brought up the Great Strides walk to her and we decided to involve the whole school in fundraising. A couple weeks ago, I brought it up at the staff meeting and later in the day someone asked me who I knew with CF and why I wanted to raise money for it. I told her that I had it, and again, she was surprised too because this was the school I did my student teaching at the year before and subbed a lot, so I had really been there for a year and a half, and she had no idea either.

It kind of makes me feel good that people can't tell, because that means I just seem like everyone else (who probably just coughs more than everyone), which is what I want. But at the same time, it feels good when people know about my CF because it helps them know me better. I'm interested in what peoples' reaction was when they found out about me, or when I told them. If I didn't have CF, I don't know how I would react if I found out someone close to me had a chronic disease. What did you think when you found out??